Whuppin' Cancer

cycle 6

2012-01-26T12:51:00.000-08:00

Yesterday I spent from 10 to 4 :30 at the infusion center. Blood/urine workup; wait for results; exam and update with doc; if results are okay then they mix the drug and then along about 1pm they begin the drug drain into my arm. Then it's 2 hrs of observation - BP, temp and oxygen levels every 30 minutes. My butt was never much of an ASSet and now 3yrs of cancer, it is pretty boney. I sat on a pillow in the recliner while getting the infusion. Think I'll get a portable pillow for movies, dinner, etc.

I weigh only 12 lbs less than at diagnosis 3 yrs ago. I have lost a lot of muscle mass, bird legs now, yet I have gained 10 lbs from the 183 low point 9 months ago. Guess where the 10 pounds has landed. Yup, right at the belly. Life long I wanted to avoid the stereotype of bird legs, no ass and big belly. And now? Well, I wear suspenders cuz the waistline was getting too low. Got the visual?

Much of the last three years I have followed with minimal participation the web based group of about 40 people with my variation of kidney cancer. Now I have to stop reading the posts - the trail so far leads only to dying off after trying the few available "slow it down" drugs , occasional radiation and operations. Too many of the members I first felt connected too have died and I just don't need to hear it anymore.

The current drug trial I am on seems to induce few definite side effects. A year ago I could blame the previous drugs for the extreme fatigue I always felt for several hours each afternoon. Now I have minor side effects from the new drug. I am not overwhelmingly tired every afternoon. I do not have the acne rash on my face and my hair no longer breaks off. My equilibrium does not get whacky. My appetite is good and the lbs have come back.

Now, I cannot point to side effects to explain the less extreme fatigue but more evenly distributed over the whole day. My bones and joints ache - not just joints, but the bone itself.. Is that the drug or the disease? Combo of both? I am often left with my head saying "I don't feel so bad, I oughta be getting more done." Am I keeping my head in the game?

Meditation, prayer and just plain relaxing are tough right now - my brain will not dwell on slow easy breathing. Even my sleep is disrupted by 3 or four bladder breaks each night. What, am I pregnant? I am more self centered, sensitive and likely to take things personal than at any point in 10 years. At times I am jumpy with RAF (resentment anger and fear.), the triangle of self obsession.

Still, blessed I am. The last post I read from the list serve group of mPRCC people was from a single father with a six yr old son. No other family or close friends. He care gives to himself. That must be sooooooo lonely and tough. I am surrounded by loving people to whom I have only to reach out and they are there. My wife is an angel who somehow finds energy and strength to do so much - so very much.

Yesterday at the infusion center I talked much with a guy who travels from Montana for end of the line experimental treatment for his racing and ravaging pancreatic cancer. Do I have to say anything more?
Thanks, Bill

Just type the first word

2012-01-23T17:33:00.000-08:00

Seems it has been difficult to write - the words just don't come. I have talked about my cancer and answered the question, "How ya feeling?" so many times and in the past I was able to give some sort of answer that made sense. It was always about side effects of the drugs and that remains easy to describe. The difference now is that the drug I am on with T-Gen has no obvious unmistakeable side effects. When I feel pain in my hips or at a bone lesion site, is that a side effect or is it . . . the disease? Is it cancer or is it aging?

So here's what I know. The scans six weeks ago showed no measurable change in size of tumors. No shrinkage, but no growth. The trial drug seems to be helping. I also know that my breathing is worsened - trial drug induced or dog induced? And, over the holidays I had to be on oxycodone for 11 days - walked with a cane, and wheel chaired through the airports. Pain radiated from lesion on my left sacral area and cascaded to hips, joints, legs. I remember no pain that bad other than an invasive biopsy through my ribs.

I never had such pain before this medicine, but does that mean it is a side effect? Couple docs have told me bone lesions just plain hurt sometimes. I can say for sure that the pain killer drugs scare me!

Sorry, that's all I have for now.

John Wayne Clouds

2011-12-05T13:24:00.000-08:00

Mystic misty clouds of Master shroud lift to reveal . . . is it Ranier or jagged Superstition? Either way or another, it's a peak of spiritual experience driving through the desert up the hill to touch another human life. It's only a horse that died but the feeling is of people, loved ones come and gone, and we flounder trying to mimic how John Wayne would deal with this. We forget that it took a little girl to help John through to his True Grit. Wow! Wake up! None of us has to go through this alone.

I am now on the second cycle of me being the first man in a "first in man" trial. It's great, no make that AWESOME that my scans showed no measureable growth since before cycle one. The trial drug may well be working. The side effects are still minor compared to how I felt last year at this time. I was soooo tired almost all the time, but now I just need to take it easy and rest 2 or 3 hours each day, and I can do that most any 2 - 3 hour time slot. Last year I was just plain wiped out every afternoon.

I have another infusion tomorrow. On this trial that means 1 1/2 hrs of exam, urine and blood tests. then another hour wait for results and if indicators from those tests are okay, then a half hour of mixing the drug. I have this mental image of Betty Crocker standing in her kitchen throwing drugs into her mixing bowl. Once mixed, then it takes an hour to drain it into my arm, followed by 2 hours of taking vitals every half hour. So I am there for about 5 1/2 hours. Whew! The veins in my right arm are getting hard to hit so my left gets the workout. The infusion is always followed by a sticking a different spot for a blood draw from a fresh hole.

The dog. His name is Tanner, a two year old Boxer. We took him in "temporarily" 4 months ago. Now, telling the truth, it would really hurt to give him back - thinking of it waters my eyes. Those tears led me to the attempt at poetic profundity in the first paragraph of this blog. Thoughts of dog loss and Ham's horse loss, bring human loss closer to home. It brings the scars and stars of memories to the surface for me to feel or conceal, reveal or try to mimic John Wayne. I need not, cannot and wish not to do any of this alone. Thanks for helping me receive from you - it's always been so much easier for me to give.
Bill

Did they really give me anything?

2011-10-12T13:34:00.000-07:00

I met yesterday with the T-Gen trial team in follow-up to my first treatment with the new drug. They asked me how I am doing and I had to ask, "Did you really give me anything?" Since my first infusion on Tuesday, Oct 4, I don't think I have felt any side effects. Whoopee! Maybe there will be effects as treatment procedesand the drug accumulates, but for now, nada!

Indeed I am the first (and so far only) human on the drug. It is a: Multicenter, Phase 1/1b, Open-Label, dose-escalation study of ABT-700, a monoclonal antibody, in subjects with advanced solid tumors. Another follow up next week and a new infusion every 21 days

ABT is the short form of Abbott Laboratories. I guess I am investing in the company - should I buy stock too?

First in Man

2011-09-29T14:47:00.000-07:00

"First in man" is the term for it has never been tried in a human before. Looks like I will be the first man in this "first in man" trial of a cMet Inhibitor drug. I guess that means it made it past mice then monkeys and now Bill G. I go in tomorrow to sign consent form, blood work and CT scan. Barring any glitch I will get first infusion on Tuesday and every 21 days after. The infusion is sitting in a chair for just over an hour with the drug draining into my arm.

Since May 12 I have been on an intervention drug for only 6 weeks. That was Torisel which had intolerable side effects. The most recent scans were 3 months ago. My thoughts and feelings swing from anxious "oh no it's growing fast" to trusting the God of my understanding. The committee in between my ears yells that I am a very poor cancer patient not doing enough to fight my cancer. My heart says I am doing this the best way for my body and spirit.

Being off any chemo for the past weeks has given me a chance to notice that some of my body signals are not side effects of some drug. Rather they are symptoms of the disease. My breathing is a bit more difficult and I can feel a particular pain in left lung where one of the larger nodules must be. My hips and lower back ache some every day. Not sharp pain, just a dull hurt that wakes me at night. I find Aleve helps some but must be augmented with Tylenol. More than any other symptom, I just plain run out of energy. Some days are better and I get errands and yardwork done. Other days are mostly lounging and napping.

Way back in April 2009 my Oncologist told us there is no cure but that a couple drugs might slow the growth. At that time we picked Tarceva, the drug that indeed kept the growth slow for two years but then the growth spiked. In '09 he also said a newer drug may be coming down the pike, and he explained cMet inhibitor. I did not understand his explanation, but I do know that a cMet trial is at my front door. Cross our community fingers.

A friend of ours recently had to move out of her house and into a roommate situation, no longer able to have her 2 year old Boxer with her. So, I have been dog-sitting. The evening I succumbed to the decision to take him in, I decided to jump right in. I sat in my spot on the couch and got him right up beside me. Within 3 days, he ruled our sectional. Had to do a little retro training on that but he catches on quickly. Sit, lay down, speak and now roll over are in his repertoire and now we work on walk, stay and heel. No crotch sniffing, jumping on, licking nor whimpering for food that we eat. I wonder what he does when I am not looking?

Taking "Tanner" to the dog park is a real joy. For those of you who live in more spacious areas than the city, a dog park is an enclosed field where dogs can run freely. Tanner is learning how to play. I assumed lifting his leg to pee was an innate trait of all male dogs. Not Tanner, but I think even that he is learning at the dog park. The first couple trips a chihuahua chased him off. His big ears flapping at full run as the small dog nipped was pretty hilarious. Thankfully each trip his confidence grows. Okay, okay, so I admit it. The dog is good for me. Bill

Strikes to my Heart

2011-09-15T13:14:00.001-07:00

Not real sure what that title means, but it seems a place to start this post. Much has been running around inside my head about this cancer - some of it is good stuff and the most is just befuddling. I went off the Torisel about 4 weeks ago. I got a canker sore two days after starting that med and 5 weeks later I still had the first and 5 more. I had never had a canker sore before, at least not in my mouth, under my tongue and back of my cheeks. I had difficulty swallowing, talking, eating, drinking, sleeping. All of that produced difficulty thinking.

So, as of this moment I have been off all cancer medication for 4 weeks. A couple days ago I met with a doc at T-Gen and I might be able to get on a C-Met inhibitor trial right here is Scottsdale. I would be the first human on the drug. I guess it worked well on rats and pre-human primates, so maybe on me too. However, that Doc led me to think I would hear from them today. It is 1pm and I feel like a teenager waiting by the phone for a girl to call me back. I am not bashful so I will call them shortly. These research doctors are not the warm and fuzzy types, considerate of patients (subjects) emotions.

Most of my adult life I have been more than willing to make a verbal stand on whatever "injustice" I perceive in front of me. At worst that has come out as verbal bullets and blades spewed at the current target, worst of all at a wife. I am "tough", but she hurt my feelings. It could be directed insanely at a fellow driver on the road who I knee-jerk think has done me wrong. I remain an expert at verbally, and subtly yet still slicing others when they are not present. We have a word for that, ummmmm, oh yeah, gossip.

Thankfully the edges of those negatives have worn smoother as I have grown in recovery, aged, and hopefully gained wisdom from the pain of my own actions. The harm I have done to others by judging them in the guise of just trying to help, improve or regulate is a fault I hope to amend in my behavior with others each day. Caution in speech for me is a skill developed by practice and does not come naturally. My friend quotes, "Will what I am about to say improve upon silence?"

That said, speaking out has also been a valued asset. It fuels the do-gooder in me that worked with abused children and today helps me sponsor damaged men. It fuels the battles I pick such as call that phone solicitor who preys on the elderly with tricky little mailings or calls of "we protect your credit cards". I confronted a driver yesterday who stopped at the same store I did, after weaving in and out of traffic nearly hitting and needlessly scaring several others on the road. Probably should not have picked that battle - the crash after the adrenalin rush hits too hard.

Sometimes I want to speak out and cannot, when reading the news. Here in Arizona the worst job is being a CPS CaseWorker. They face budget cuts, fewer coworkers, more cases, less time to make good follow up and therefore at least some of the blame for yet another child killed by atrocity perpetrated by some adult. Can you see boiled water, cigarettes, feces, clubs and starvation used as parenting tools? I once saw with my own eyes a baby withcigarette burn on the bottom of its feet, being taken from a mother screaming, "You can't take my baby. I love herrrr!!!"

These cases are not rare nor unusual. They occur embarrassingly more here than in most any other developed nation. This in the America where so called patriots scream for more cuts to govt spending in child programs, education and even food for kids. Where are the so-called pro-lifers for those babies? I wish I could stop reading about those children but it just should not hurt to be a child. I no longer can do tough political conversations any more. I cannot speak for those children. I cannot argue my point. The price in my health is too high. Cancer drugs kill more than just targeted tumors. I have hyper tension. I do not breathe as well. I am too tired too much. And my tears roll too readily. Really? I just can't write anymore right now.

How do I pray ?

2011-08-28T00:34:00.000-07:00

I rejected organized religion for me many years ago. I was so self centered by age 12 that the scales of my decision were tipped when the entire congregation voted to start Sunday services and hour earlier. They wanted to and I did not. A shallow tipping but that was the last straw, and only twice in the ensuing 47 years have I tried "going to church" on a regular basis.

Once for a woman. It was 1994 at a near evangelical church and I went for a woman. I liked the rock 'n roll approach to the music and the words passed in a slide show above the band. My favorite was, "My God is an awesome God", and I have hummed more than a few bars many times since. Once I arrived late to find HER already there and a full house save just one seat on the front row. My seat was just a few feet from the piano positioned perpendicular to my row. The pianist was excellent and enthusiastically bobbing and bouncing to the beat as she pounded the keys. She was very hot and I was aroused. Only later did I learn she was the pastors wife. I never went back.

The second go at attending was 4 weeks in 2000 with wife number 4. The preacher's topic in week one was the blessings and challenges of sex in marriage. He spent 3 weeks expounding on that topic and did a great job of convincing me that he was a REAL person talking about real life stuff. The 4th week however, the sermon with one finger repeatedly jabbing upward as he hammered on , "There is only one way to salvation." I have just never, even as a little boy of around 7, ever believed that my Awesome God could be so exclusionary. In my young boys's eyes I was appalled that all the Indians (Native Americans) were going to hell. As I have grown older I gather that Indians (of India) are excluded too, even Ghandi.

Perhaps some of you are right, thinking I have it all wrong and twisted and my own salvation (redemption?) is iffy. Maybe you are correct in how you believe, but let's keep the door open; confident belief in ones own values becomes twisted self righteous when pressed upon others.

I do believe there is a power far greater than any of us earthlings, the power that for example had my back through many miraculous survivals. I do not claim to know the specific description or name and I feel absolutely no interest in trying to define that entity. There are many words I use to speak of that power: God; Great Mystery; My Creator; Spirit; Universal Entity; there's a few examples. None are enough to express my belief in a great power beyond my ken. How about, "The God of my misunderstanding." My Protector, Jesus, Mohammed, Bhudda, Ghandi and Mother Theresa are all best friends and model really good ways to walk. "For what is required of us but to do justice, love kindness and walk humbly with your God." Straight out of the Torah, the Bible and the Bhudda and Ghandi spoke variations of that oh too simple guideline.

So, how do I pray? As a newly clean (reborn?) adult I first prayed accidentally as I stormed feet stomping away from a job site, "Let go let God, Let go let God, let go let God." Over time that evolved to "I ask only for knowledge of your will and the power to carry that out." "Thank you" always fits in with my praying. Today my communication with my Creator may at time be very informal as in ,"Hey Dude!" Father Mother God is a favorite beginning sometimes. When I need to calm, relax, or go to sleep I might string together a few learned somewhat formal prayers, almost like a mantra near hypnotic. One favorite is:

God, I am now willing to put my life into your care. Align my will with yours. Help me to recognize and carry out your will. Open my heart that I may be a free and open channel for your love. Take away my fears and doubts so that I may better demonstrate your presence in my life. May your will, not mine, be done.

Sometimes my prayer is short, maybe even just a mindful breath, appreciating that simple miracle designed by an incredibly skilled engineer using advanced hydraulics, pneumatics, electonics, all in a spellbindingly artful manner. And of course, the shortest of all spoken prayers, HELP!

Now I lay me down to sleep . . .
Bill

Between trepid and intrepid

2011-07-22T12:28:00.000-07:00

After using the word trepidation last blog, I had to use the dictionary. Trepidation is: "a nervous or fearful feeling of uncertain agitation". Trepid is: "timorous or fearful". Trepidant is "timid or trembling". So then of course, we have timorous, timorsome, and even timoroso. So it would be accurate to say . . . . a few days ago I had trepidation and looked trepid because I was trepidant. I could probably replace those words with timorous, timorsome and even timoroso, but they all left me wanting to go to Timor, because I was not tumor fighting intrepidly. Sometimes that is how my mind works - I have trouble following it myself.

Anyway, last Saturday, Sunday and into Monday, I felt pretty shaky about getting the new drugs drained into my arm on Tuesday. Somewhere in there however, I started talking and found the honest realization that I was scared sh*****s about what the drug Torisel would do to me. In my head I was already running out of TP, jumbled in the brain, having heart attacks and drooling on myself. Is that called projecting? Fortunately I remembered about prayer, meditation and sharing with another human being. Oh yes, going to the Bob Dylan concert Monday night helped too.

So by Tuesday morning I felt okay about sitting in the infusion chair for an hour or so at 110:30am. Turns out it required 4 drugs and 3 1/2 hours. An antihistamine against allergic reaction, some sort of nausea prevention, the Avastin to help cut blood supply to tumors, and lastly the Torisel. Torisel is hopefully good at being a "targeted therapy" hitting the bulls-eye of poisoning only my tumors. Realistically it is probably more of a shotgun aimed in the direction of the tumors.

Now it is Friday, 3 days after the infusions. My throat is a little sore, and my voice is raspy (Avastin side effect) and maybe extra achy, but I call this a "10" compared to how I felt two months ago. Maybe the side effects of these drugs will gradually increase, but so far, so good. Maybe I can ride somewhere in between trepid and intrepid, trusting God and talking with you. Thanks.
Bill

Technology for her birthday

2011-07-16T11:03:00.000-07:00

Yesterday was my youngest sister's birthday. She died a few years ago and I miss her. But we got together and sang happy birthday - my Mom, brother and two sisters. We did it on Skype, over the internet in a 5-way conference call. This wasn't a plan, but just unfolded as we added each other to the call. It was technologically amazing yet so simple to do. We didn't have the video Skype offers, but I think we all could see Robin on that call. Happy Birthday!

I have been on vacation from chemo for two months and felt great for a few weeks. However that last 10 days or so I have felt more tired and just out of it. I do still have cancer and it is time. So my next drug infusions begin this Tuesday. The Torisel I will get every week, Avastin in addition every 14 days, and add in Zometa for my bone lesions once a month. This combination is supposed to stabilize and slow tumor growth until something better comes along. Trepidation, that's my word of the day.
Bill

Strategy

2011-07-09T20:57:00.000-07:00

May the 12th. That was the last little white pill of poison chemo intake. Nothing since then; two months. I had a scan 10 days ago that says I have new growth and so it is time to make a move of some sort. Strategy.

Since 5/12 all of the side effects have gone away or at least decreased. I am still short on stamina, but much better. I still need to take high blood pressure meds. My hair is growing where it was just breaking off. I just now pulled an inch long sprout out of my right ear. Some arm hair and even eye lashes are going wild; making up for lost time I suppose. Acne-like skin rash has cleared so I no longer compare notes with embarrassed adolescents. My equilibrium is back enough to ride my bike, and I can feel safe driving most anytime. My appetite is back with a vengeance - 12 pounds to the belly in 8 weeks.

After 2 yrs of $850 COBRA premiums I now qualify for Medicare and I signed on with the CIGNA version. Looks like the out of pocket medical will add up to less, but paying my portion of the drugs could get crazy.

I checked out two drug trials in California, but the energy/expense of that weekly travel is just not feasible. There is a possible trial here but not yet up to speed. There may be a c-met drug trial coming to NIH where I was before, and they would take me back. C-met inhibitor is a drug category that hold the most promise for now. However, c-met drugs are not yet available. One of them has been throiugh trials and has shown strong results for PRCC. BUT WE ARE NOT ALLOWED TO HAVE ACCESS TO THAT DRUG CALLED XL880 FROM THE PHARMACEUTICAL COMPANY CALLED GSK. It is not yet approved by the FDA, and GSK will not make any money on it, so it may never be available, even if it is the last house on the block.

The drug I am looking at taking now for the short term, is an mTOR inhibitor called Torisel. It has a list of side effects. The word 'constipation' follows the word 'diarrhea' on the list, which seems humorous to me but there is nothing funny about some of the other words. However the odds are good that drug will keep my cancer growing slow enough to buy me another year or two, hopefully something better will come along by then. Problem is that I will feel pretty crappy for that year or two.

Jacki and I had a tearful heart to heart about strategy. It has been wonderful these past two months of feeling good and maybe it's best to stay off the drugs and squeeze out the highest quality of living possible as long as possible. Still, that leads to faster growth and increasing bone pain and then coughing up blood as my cancer takes me down. What if the discomfort of an interim drug does help me hold on until a medical solution evolves? If it does then great! If it does not then . . . I have a leak in both eyes, so I'm gonna stop for now.
Bill

Bicycle

2011-06-25T09:19:00.000-07:00

I rode my bike this morning!!! That may sound like nbd to most people, but this my first ride in over two years. It was only about 1/2 mile, and took it easy - I will probably be sore tomorrow - I hope so! It will be a joyful sore because I rode my bike to get it. I just cannot convey in words how awesome it was to ride. Wow!

Before this little malady took me by the 'cajones' and shook out my balance, stamina and strength, I was riding 3 or 5 times a week, 6 - 12 miles each ride. When I stopped smoking 5 years, 3 months, 21 days, 16 hours and 31 minutes ago (who's counting?) I started riding and going to the gym soon after that and got into the best physical shape since my 30s. And then the big C began taking it away. Balance, weight loss, muscle loss, stamina, energy. Now, a month off any chemo, it begins to return.

I went to my home group last night for the first time is a couple months - 8pm meeting lasting to around 10 with hang time after, was just too late before. Last night I felt good well after getting home. 'Twas great getting the hugs and seeing my homies. Soon I go on some other drug, but maybe it won't take so much away. Regardless, I sure do appreciate the respite. In recovery we call this a pink cloud; it will pass, so enjoy every minute!

This is the best physically I have felt in a loooooong time, but between my ears I have office workers who keep telling me how empty the cups are. The news is all bad. Politicians suck and we are forgetting the poor and unfortunate. The singers on "The Voice" all suck. Drivers on the road with me all drive maniacally or too slow. My belly is too big and I have jowls. You don't do things right and you really need to listen to me.

So what's really going on? I know the current feel goods are from going off chemo and I am already projecting, with some previously denied dread, the re-occurrence of previous symptoms. I have felt overwhelmed with searching drug trials, getting medicare set up, fretting about future medical expenses. Setting up my Medicare involves picking an insurance company that contracts with Medicare. Maybe you already know how I feel about scumbag insurance companies. (Oops, did I say that out loud?) What drug will best treat my cancer, and will my insurance cover it? Even the method of chemo delivery, injection or pill form, effects the cost and what percentage insurance will pay. Should I go on typeX chemo or typeY chemo? Gee, which will insurance approve of the most?

So, what to do about the currently pervasive half empty cup attitude between my ears? What a silly question! I already know what to do. Knowing by itself does me absolutely no good. Doesn't do anything at all other than give me one more way to evaluate myself harshly for not doing what I "should" do. Without action, knowing accomplishes nothing. So, get the prayer and meditation going. Get to another meeting. Ask for help. Tell the truth to just one more person willing to listen. Good grief, it even helps telling the truth to one more person who doesn't listen. Reach out and help just one more fellow human being. Give another hug. Trust God, clean house and do the next right thing. Just for today I will put into action what I already know to do. Maybe even get on that bike again.
Bill

They should do a study

2011-06-19T18:22:00.000-07:00

They should do a study of what happens when you come off a chemo drug after 2 1/2 years on. I felt really good for the first 10 days or so, and I still do. And, some odd little symptoms linger. Late morning I may feel extreme drowsy with a little blur vision and off balance. Or, I might not and feel fine until 4 or 5pm, then the drowsy thing. I swear I cannot see as well since stopping the drugs. There is an intermittent blur, one eye then next time the other. My body hair is growing back and I need a haircut much sooner than all the time on treatment. My head hair is not as coarse. None are tough symptoms, just little oddities that I won't even notice or remember in a couple weeks - the body does forget.

It has been a month long break from treatment. Now it's time to go again but on something different. I have been exploring several "first in man" trials, but I think I will wait and be "2nd in man" when those trials mature a bit. NIH is trying to get one of those and I will be a good candidate when that happens. For now, I plan to start Torisel, a weekly in the arm infusion along with the previously used Avastin to slow blood flow to tumors. For Torisel info: http://www.torisel.com/How-Torisel-Works.aspx

First of July I qualify for Medicare, so no more very high premium COBRA payment. Medicare is not free but it's expense does have a predictable cap that most likely is less than I had to pay on COBRA to have coverage. Medicare is way to complex to get started on, mostly because Congress has passed so many nit picking laws. I think many elderly get caught in the complexity and do not get the care they need or pay too much. Hopefully I have it nailed correctly from the start.

Between figuring out medicare and researching trials and knowing I need to get back on treatment, I was feeling overwhelmed and stressed. The relief of getting those things done is welcome. Thank you all for being in each other's corner.
Bill

Father's Day

2011-06-19T16:26:00.000-07:00

Any male can sire a child but only a Dad can be a father. My Dad was a father. He died in 1992 of anger, resentment, fear and low self esteem. It's hard to keep those feelings stuffed down and in without something exploding like a heart attack or some other bizarre symptom of stuffed emotion. He slapped me around, maybe worse so it is said, but I do not remember. He knocked my Mom around and berated all behind our closed doors. I saw him cry once, at his Mom's funeral. I heard him cry once on the phone in a drunken stupor.

And, he was my Dad. He took me to the pool hall and to work with him - I loved to follow him around, and sometimes what he won at pool is how we ate. He taught me to throw and called me "Rag Arm" as I learned to be the pitcher and play shortstop. He coached my teams from age six onward and then he coached my brother and the girls. He sometimes drove a hundred miles to see my basketball games and wrestling matches even though I lost every one.

He found my first car for $400, taught me how to change the oil, sand it for painting and install my eight track player with customized speakers. Many times at night I stole a dollar out of his pants pocket until one night I found instead a note saying, "Take two". I never did it again - not from him. I came home drunk and he was waiting. Didn't say anything except,"Son if you ever come home drunk I will take you down and sit on you while I pour a fifth of Jim Beam down your throat." He didn't say the word "again", but I never came home drunk again.

Sometimes I got straight A's in school. He was a high school drop out who could do complex math in his head. He didn't read very well and his singing in church scared the organist but no one said anything. I read alot, graduated from college and I still sing in a band in my head. He didn't say much about that stuff, rarely was I good enough, and yet I always knew he was proud of me.

He furiously compared himself to others, falling short to the day he died, and yet well over 300 people in our little home town came to his funeral. I guess we all disagreed with his estimation of himself.

Especially I think of him every Father's Day, remembering the good stuff and feeling sad about the bad. He grew up with the bad stuff, but I think he ad-libbed the good. He was my Dad and I miss him.
Bill

Taking a break

2011-06-03T20:50:00.000-07:00

I started Tarceva in April 2009 and added Avastin July of 2010 as part of the AvaTar protocol at NIH. So for 25 months I have been on Tarceva until 10 days ago when my protocol participation officially ended. The Tarceva and then the combination no longer was keeping growth slow. As of today I have relished 10 days of no treatment of any kind.

Driving yesterday at 2pm was a first since April 2009 - one side effect was my equilibrium being off just enough to prohibit driving . No 4 or 5 hours of down time mid day due to mushy brain and fatigue. I have already gained 8 pounds with my improved appetite. Too bad the weight has all gone to my belly. My skin rash has cleared enough that I no longer have "acne face". Generally my energy is up though my strength remains low due to muscle mass loss since April 2009. Maybe my tumors are growing more, but oh my gosh it is nice to have the break.

NIH diagnosis zeroed in on non-hereditary sporadic PRCC - not very responsive to another trial drug XL880 it seems. Per my NIH team suggestion, I am investigating 2 or 3 C-met Kinase inhibitor "first in man" trials, but may go on Avastin plus Torisel for awhile. My COBRA insurance will cover infusions but not pills such as Afinitor, so for a few weeks until Medicare kicks in my choices are extra limited. Insurance companies do tend to rule!

My cancer was first noticed in Dec 2008, and then identified as PRCC mets to lungs in March 2009. At that time an oncologist at Mayo inappropriately told me 18 mos to 2 years and already I know he was way off. Back then my hope was for a medical advancement within 2 years. It seems the Tarceva and Avastin drugs did at least buy me considerably more time to remain in the game. Best wishes to us all.
Bill

The Long Way Out

2011-05-22T16:02:00.001-07:00

"The Long Walk: The True Story of a Trek to Freedom", a book made into a recent movie called "The Way Back". I saw the movie and now I am reading the book. 5 men, later joined by a young woman, escape from a Russian Gulag during early WWII. They trek 4000 miles through Siberia, through the Gobi desert, and over the Himalayas to freedom in India. Along the way they nearly starve and/or die of thirst or heat exhaustion or freezing to death.

Their symptoms included extreme weight loss, dysentery, diarrhea, scurvy, edema and frost bite leading to gangrene. Several of them fell in their tracks and died in the desert - all were emaciated and ravaged by multiple nasty maladies. What a miracle that any survived. Good movie; good book. Inspiring to me.

My symptoms today fall far short of what they made it through. They felt excruciating bodily changes that remain beyond my experience. My symptoms have been rough and near debilitating but if they can do it, so can I. Screw the possible plan of stopping drug trials. Rather, continue the search and try possible bridges and secrets to the regression of my rare (?) form of cancer. Those bridges just might be around the corner of medical research and I believe I can hang on, trudge along and survive my own "Long Walk Out".

Here's the update: I am officially off the drug protocol on the past 10 months. The protocol included Avastin to reduce blood flow and Tarceva, the "Little White Pill" of poison that I started April of 2009. Those drugs slowed my cancer growth for awhile, but now the growth of nodules in my lungs and the metathesizing into my bones prove that it is time to go another direction. I have a lead to 4 other drug trials holding promise for breaking the structure of my cancer cells. I could start on of those "first in man" trials. Or I can start a combination of blood starving drug and a different poison drug, maybe Torisel. Tomorrow Jacki and I meet with my oncologist here in Scottsdale to gather info and discuss possibilities with him. I am penciled in for two infusions tomorrow, but we have decided to wait until we have done a bit more research. My body can use the rest.

The past 3 weeks since my last posting have been the greatest swing of emotions since my diagnosis in January of 2009. From despairing and despondent, hopeless and depressed, to hopeful and full of faith, all cycling within the same hours or even minutes - that has been the ride since blood in urine began in April. Turns out the blood was not from an infection. It might be a symptom of the blood supply drug, but more likely is my biggest tumor pressing on the connections between kidney and bladder. The bleeding is now sporadic and I think correlates with how much water I drink. More is better. The bleeding was traumatic and discouraging at first but now I am becoming used to it.

Meanwhile, I am feeling pretty good and today my chin is up. The short break from drugs is a welcome respite. My bicycle is calling my name - maybe just a short ride.
Bill

Move quickly

2011-04-30T12:58:00.000-07:00

Moving quickly because blood in urine began again while still on antibiotic, and because they do not know the cause, NIH now wants me in Bethesda in two days not 10 days. Did not sleep well last night but I did write a little something at 1:30am:

If I can be there at just the right moment,
hearing the squeegee slap against the shower wall.
She slides the curtain open and steps into
the towel I hold and draws it to her heart.
I cradle her face between my hands and see through
her bright eyes into her soul and know
I love her.

Gratitude.
Bill

The unknown "one more thing"

2011-04-28T21:00:00.000-07:00

The previous "one more thing" was another Urinary tract infection. Turns out, it is not a UTI. NIH has studied the culture and it is not growing like a UTI, but they don't know what it is instead. So now I get to go back to Bethesda early for a round of CT scan, MRI and maybe PET to see what is holding up the urine show. Where's the cranberry hue coming from? I guess you could say to me . . . . . . . . ., "Urine for it now!"

One more thing

2011-04-26T17:17:00.000-07:00

Have not had words come to mind for awhile about what to write. There is a certain slogging through mud feel to how it's going since going off and now back on my Avatar regimen. The Avastin infusion continues every other Thursday. The "little white pill of poison" aka Tarceva is at a lower dose now and so far the side effects are not as rough as before. I have more energy - I last a little longer in the mornings and my afternoon funk is shorter, meaning I can drive and get out and about as early as 5pm. Past 9ishpm though is still a cur off of energy. Get horizontal.

Last time in Bethesda they did a cystoscopy, looking inside my bladder up to the tubes coming from my kidneys. They used a mini video camera but we will leave out how they got the camera in place. That video showed no problem in bladder, but also did not explain my chronic microscopic blood in urine. Well, whoopty dooo, now I have blood in my urine. Can you say cranberry juice with chocolate syrup mixed in? The chief research nurse says that is a very helpful description of the blood so I thought you might appreciate the visual too.

It is called a "UTI", urinary tract infection. I never had one before, but I guess it is very familiar to most women. What a gift it is to pee red in the middle of the night. What? Did I eat too many cherries? Is it Christmas? I was so taken aback that I erased it from my willingness to tell anyone (Jacki). A few more red streamlets (streamlets? Not very manly my head says) and I did finally fess up on the way to Tucson for her sister's b-Day. Late that night I agreed to reach out to the on call doctor back east. He wanted me to go to ER now, but I knew it would be all better in the morning after a good night's sleep. 'Twas the next night, late, that I followed his instruction. That's when I got the cranberry chocolate.

So the ER doc diagnosed UTI, and I took antibiotic for a week and it went away. Not!! 10 days later, same thing again but darker. ER again, sample, antibiotic, but this time I sit here 3 days later still feeling an ache lower back - kidney area). Doc says the culture isn't growing like a UTI bacteria and maybe it is something in my kidney. And there my dear reader, is the title of today's blog, "One More Thing". I'll know more in 2 days, but in the mean time I get to view the movie in my mind in fast forward, but it wants to stick on the same few frames of disaster. My own little internal tsunami of tumor exploded and rushing around my defenseless body. Stay away - it might get messy. Why don't movies come with cartoons anymore?

Anyway, I can make light and try to entertain. Or, I can tell you that while I still do not think I fear death, I do fear excruciating pain. The cancer has begun to spread into my bones. I swear I can feel spots of it when I lay down in certain positions. If the pain get too great, then doctors and even my sponsor start talking about morphine and even methadone. I am 17 years clean from drugs and now cancer contemplates screwing with my recovery. It sure is easy to slip into projecting my minds version of the future.

So instead I can breathe and notice my breath, slowly in and easy out. Again. Notice and listen to my breath. Breathing, God's gift of a built in little meditator. Slow down Bill. Let it go and worry if or when it comes to pass. Breathe, deeply in and peacefully out. Right here is where I am. The time is right nowe. Right here and right now, I have all I need to be happy with the life I have and the experience that has led me to this moment. And be grateful for my wife and daughter, friends and family, people who populate my life and offer love and acceptance anytime I am willing/able to receive. Thank you,
Bill

Still an Avatar

2011-03-30T15:29:00.000-07:00

Started on the same two drugs again - the "little white pill", Tarceva, at a lower dose. The logistics of finding a way to afford the drug after that will take time, perhaps until July 1st when my Medicare starts. Until then, the Avatar protocol will hopefully hold growth and spread to a minimum. Maybe the lower dose will work better - you know, like 1 or 2 cups of coffee vs 9 cups. ;-)

Still, the news from the recent battery of scans and tests has given me (and Jacki, Kate and . . .) pause to consider and feel the current facts of my particular brand of cancer: there is no cure and the best current treatment can slow growth but not stop it. The best medical hope is that I can endure until a "cure", perhaps genetic intervention, is found. Short of that, continued growth and spread of the disease will take me out of this life. Previously I had looked only at the nodules in my lungs as very slow growing, leading to a long drawn out bout of cancer. Throw in the spread to my bones and new growth in my lungs, and the long part shortens.

Last weekend Jacki and I went to a friend's cabin in the mountains and considered the ramifications of the news from 10 days ago. I look at the previous sentence and know at a visceral level that it is a cold and shallow statement of what is really going on. The bottom line is that the road to my death is shorter and the time is sooner. Not imminent, but not long and drawn out so much as previously assumed. In the mountains we shared the intimacy of getting in touch with great sadness. We shared a gut level appreciation for where we have been and the richness of our life together today. But we also cried and talked, taking notes about end of life matters.

So now, a few days later, I have taken 5 days of the new reduced dose of little white pill poison, and I had an infusion Thursday. As before the two post infusion days are extra fuzzy and tired. So far the good hours each day seem to total about 8 instead of the old 6. I even have some hair growing on my arms. The acne-like rash on my face is still gone. I am still very tired, but the naps are shorter. I have gained 5lbs. All in all, the break from chemo was really nice, and so far the side effects are still less than before.

Some moments are bleak outlook "screw it, I'll just roll over and die!" Other moments are over the top optimistic expecting a miracle as though I know the details of God's plan. Other moments are just that: the small bits of life that are to be noticed, appreciated and shared. This moment is awesome! Oops, that moment passed, but check out this moment! And now another moment. Did we notice?
Bill

Avatar

2011-03-25T08:34:00.000-07:00

The two medicines of the protocol I have been on, and now have a break from, are AVAstin and TARceva. Ava-tar. There are a small number of us on the protocol at NIH, maybe 20 patients, informally called "Avatars" One of them died this week.

As I am on break from Avatar and considering very limited other options, hearing that news magnified my already roiling waves of emotion. Turns out that my own response to the Avatar protocol is sketchy - some shrinkage and some growth and some spread. WTF do I do now?

Jacki and I were in bed a couple nights ago nearly asleep. My body started jerking as tears insisted on coming out. The jerks awoke Jacki and she asked what's wrong. "This is so hard!" was all I could say and it was enough. Now we both were crying in each others arms because this is so hard for both of us.

All but one of my current options offer slowing or maybe stopping the growth of cancer in my body. It is now in my kidney, my lungs, and growing into my bones. I went off the Avatar protocol in part because the price extracted by side effects became greater than the decreasing benefit of the medicine. Now I look at a couple other drugs that might slow or maybe even stop my tumor spread and growth. They both are extremely expensive. I go on Medicare 1st of July, so maybe then the cost could be covered. I will not break our bank.

"All but one of my options . . .". The spouse/caretaker of the woman who died called it "She became an angel last night." I am not ready to stop seeking a solution for my disease. I will keep "fighting". And, I dream at night of becoming an angel.

This is so hard!
Bill

On the spot

2011-03-19T16:23:00.000-07:00

When we go over the scan results, in the exam room are usually 5 people: the lead Doc, his intern/student, the Chief nurse on the project, my support person and me. This time it was my sister, the Lead Doc, the nurse and a doc skilled at showing the film of the scans. Right before my eyes were the before and after scans from July and from this week. I could see the shrinkage and even disappearance of some of the smaller nodules in my lungs. I could also see the before unnoticed nodule grown to 1.18 inch. And there near my tail bone was the lesion grown from scratch since July, now a hairy bright spot shaped like a curled up caterpillar.

So, after 8 months on the combination of Tarceva and Avastin, I have some shrinkage, a new and large lesion on a lung, and my cancer spread from kidney to lungs and now into my bones. The side effects boil down to debilitating fatigue most of every day. The lead doc looked me directly in the eyes and right there on the spot said, "This combination is not working." My eyes teared. Fear of letting go of the familiar and of trying something new. "What if the next combo doesn't work at all."

After such a pow wow, I have 8 or 10 people who I must tell about what happened. I am wiped out physically, mentally and emotionally by that time and thinking mostly of myself: getting to the hotel and crashing. Instead I must get my bags and catch the airport shuttle to catch my flight home to PHX. Six hours later I arrive home with Jacki and a few into-me-you-see moments with each other. Then I crash, deep sleep, awake and only then begin to inform others who need to know what happened. Several text messages await. Even more voice messages. How could I possibly forgotten to call my daughter, and my Mom. This trip my sister went with me and I left Jacki in the dark for a tortuous amount of time. Ohhhhhh, that hurts my heart.

Now it has been two days since getting home. The new information is just beginning to sink in. I have slept about 20 hours since the plane landed. I have talked to most of the 8 or ten and the words have become more succinct at summing up the new picture. Sharing the picture with anyone however, requires I dig inside to find what I really feel. If I can do that then we connect as two human beings sharing from the inside out. Often it takes several conversations. Cups of love seem to fill with tears of compassion. That is why they ask and why I want to answer. Thanks for being along for the ride.
Bill

... and fits in my life?

2011-03-18T14:51:00.000-07:00

Metastasized Papillary Renal Cell Carcinoma. Journey through cancer and how it feels and fits in my life. Those are the words that 2 years ago I used to describe the intended scope of this blog. I guessed, I was wrong and totally off target on the last part. Cancer does not fit in my life!!! It has however, commanded, shaped and overrun my life.

Two years ago I was told I had maybe 18mos to 2 years to live. And then a carrot was raised in front of my nose: "We have some new medicine that might slow or even stop the advancement of the disease." Reaching for that carrot has ruled my life and had a huge impact on my loved ones. Now, a little cost/benefit analysis.

Cost: I have lost 30 pounds, mostly muscle mass; I am no longer strong. I am left with a few functional hours in the morning and a few in the evening; forget about most activities from noon to 6ish everyday. My thinking is sketchy and my equilibrium is off. Fatigue. Fatigue. I cannot remember the last time I did anything for over an hour without stopping to rest, usually in a horizontal position. Fatigue most of the time. A friend gave me words that fit: it feels like a hole opened in the bottom of my heel and all the sand its pouring out. Maybe the biggest cost is the emotional toll on Jacki and Kate, the rest of my family and my sponsees.

Benefits: As of this week and the scans, analysis, I have shrinkage and even disappearance of some of the multitude of lesions in my lungs. I have a couple good new friends (thanks JT). 2 or 3 of my sponsees and my sponsor have been there every step of the way. I have grown closer to family: Getting along and getting to know my sister Gina for 8 consecutive days surpassed my imagination. The 6 days in a row of just my 26 yr old daughter and me together, no one else, is a precious miracle. I know of no other father with that experience. Jacki, my wife. Indescribable! In our hurricane, flexible as a willow, rooted as an oak and giving fruit from her inner orchard. I did not know this depth of love and I aspire to be the man one day at a time deserving.

The scans this week showed shrinkage of some nodules in my lungs, but one bad boy thought dormant in my lung but next to a rib, has tripled in size to 3cm, about 1.18 inches. Several of the others that have shrunk remain an inch, give or take. But worse to me is the growing nodule near the left side of my tail bone. Overall, kidney tumor is about the same, some tumors in my lungs shrank but a new large one has popped up, and now my cancer has metathesized into my bones. The cost out weighs the benefits.

The lead doc at NIH/NCI on my study is taking me off both drugs for a couple weeks - take a break. Jacki and I will consult with him and the rest of the team about what to do next. There are a couple other combos of drugs to try. It has been near 48 hours since last dose of the daily "Little White Pill", and I feel better already.
Bill

Skype Over My Head

2011-02-28T10:09:00.000-08:00

If I do not blog today, I do not get to Skype with my wife tonight. EXTORTION:"to gain especially by ingenuity or compelling argument". I love it when she extorts me, so here is today's blog.

Skype. I knew nothing of it until about year and a half ago. Then as I learned, I had a bright idea: "Maybe my 78 yr old mother might like this for her birthday". So I gave her a computer camera (webcam) and helped her get a simple online program called Skype. Now she can call anyone who also has a webcam and see each other as they talk. Let me tell ya, this is the best gift I have ever given to anybody. My whole family is visually connected even though hundreds or thousands of miles apart. It makes Mom's day to Skype - ah what the heck, it makes my day too.

So now, Jacki is away skiing for a week in Whistler, BC, Canada, with long time girlfriends. Don't tell her, but I was scared to have her leave. However my cancer effected day had gone, I always knew she was coming home and it would be alright. What am I going to do without her? At the same time, I knew she needs the break from cancer, from me, from work, and she needs the magical filling up experience of three long, long time friends hanging out together. I am thrilled she is gone!!!

There was some advance planning besides the actual logistics of her trip. Jacki, my daughter Kate, sponsees, family and friends have colluded to make sure I do not isolate, hibernate nor contemplate too much. Gatherings were arranged, appts arranged, phone calls arranged, drop-ins arranged, and yes, Skypes arranged. I am in the middle of it, but can you also feel the piles of love I am left to sit in here in Arizona? Gives me chills.

Physically I feel better than in several months. The horrendous energy sapping gagging vomiting cough that lingered three months has finally lifted. I get to re-cooperate and get stronger, clearing away the clouds enough to sort out what the medicine side-effects are. My energy level is slowly increasing. My body is healing and my outlook is a little brighter. It is hard to keep the chin up when the body is hacking and struggling to breathe.

So anyway, I go to Bethesda in two weeks for scans pokes and prods, evaluation and re-staging. If I see measurable significant shrinkage of the cancer nodules in my lungs, then I will continue with the current regimen. If no shrinkage? What price is too high? We shall see.

Kate comes over after work today - maybe shoot some pool (she is pretty good). Talk with a few of my guys. Best of all, I get to Skype with my wife tonight - hear her voice, see her smile, and let each other know it's alright and we are blessed. Pretty good gift this Skype thing, don't ya think?
Bill

Hungry, Angry, Tired

2011-02-09T19:13:00.000-08:00

3 of the for biggies in H.A.L.T. Thank God I do not have to deal with lonely. My wife, daughter, family, are all here for me. My recovery sponsor has been through what I am going through. My sponsees - a couple have gone by the wayside, a couple I let go, a couple have really stepped up to being here for me. Two of them showed up and built from scratch a banister for the stairs to our master BR. Every time I go up or down I think of them and the pay it forward nature of how we get to live.

My sponsor rode my back early after diagnosis about my inability/unwillingness to ask for help or even say yes when help is offered. I have been exceptionally good at giving all these years, but receiving... ? He has helped me learn that if I cannot receive, then I have taken away your right to give. What goes around comes around. Kharma. Pay It Forward.

Some things I used to do I can no longer do. I cannot drive for roughly noon to 5:30 each day. I must ask for rides or to go in my stead. "Could you pick up a loaf of bread?" Readily asked of a family member or best friend, but to ask something so simple of someone further out in my circle? Well that is tougher. Yet every time I have done so it was a gift given freely and with a smile. Much as I have been taught to give. If I expect appreciation or anything in return then it is no longer a gift but rather a form of barter. It is no longer loving but trading; a good lesson for a marriage.

Update: well, I have felt angry, frustrated, hopeless more recently that is good for anyone around me. Only if I talk about it write about it are those emotions released healthily. When I stuff it (and I do all too often) it comes out sideways as depression or lashing out at others.

The protocol of drugs I am on has resulted in no growth, but those same drugs extract a heavy price. Fatigue, and pain when I do not honor that fatigue. I have a "mushy" easily distracted, wondering attention span brain every day in afternoons. That is why I do not drive in those hours. I once drove home from CostCo, a 5 mile drive I have made a hundred times before. I started home a little past when I must not drive: four wrong turns and near collision on left tun into our community. Bill! Do drive between 11:30am and 5:30pm. Period!!!

It is getting late (9ish) so I am going to cuddle with my wife and watch Bones or Castle. We have treasure relationship. This cancer is so very tough on Jacki, and me, so we hold on tight! Thanks
Bill

Back from Bethesda

2011-01-21T15:15:00.000-08:00

Yesterday we flew home after our bi-monthly trip for re-upping all the scans and tests and measurements. No new growth of my cancer cells. That's good news. Two "hotspots" on my sacrum, the triangular bone just below the lumbar vertebrae, are metastasized kidney cancer cells. Very small so far, and I may start a 3rd drug that has shown success in keeping it small.

I am numb and do not know how I feel about that right now. More will be revealed. I still have my cold - ninth week - so it adds to my fatigue. My bi-weekly infusion was yesterday; always tired for 2+ days afterward. My big activities today were phone calls, watering outdoor plants, sitting in the sun for awhile, and then napping/zoning, giving myself a break. That's all for now.
Bill

Long Slow Drawn Out?

2010-12-26T19:48:00.000-08:00

2 yrs ago I learned I have cancer and saw the CT scan pic of a baseball sized tumor on my right kidney and one radiologist saw, "too many nodules to count" in my lungs. Turns out the nodules are kidney cancer cells spread into my lungs. I went Mayo Clinic, surprised for some reason that I got to go there. After much poking, prodding, scanning, etc, they gave me a very invasive biopsy, sticking fingers and equipment between my ribs. It still hurts where they took chunks out of my lung.

Bottom line, they made a diagnosis, told me I had 18mos to 2yrs, and referred me for a 2nd opinion. Turns out they were a little off on diagnosis: they urethelial but it turns out to be kidney. Either way, the cells are papillary cells which make my cancer unusual and as of 2yrs ago, incurable. mPRCC. Metastasized Papillary Renal Cell Carcinoma. Metastasized means spread into other areas of the body. A papillary cell has kinda like fingers, which grab into surrounding healthy tissue. Renal means kidney. Carcinoma is basically a lump of cancer cells.

Now I don't know about you, but until it hit me, I thought cancer was cancer. Now I know there are a couple hundred kinds of cancers. Some can be removed. Some respond well to chemo or radiation, and we have all heard of cancer just disappearing. I would never have guessed there are several types of Kidney cancer cells and several of lung and breast and bone and blood. I would never have guessed I would get a slow growing type of kidney cancer that at best can be slowed but not stopped with current drugs. Today when I see or hear about "find a cure for cancer" or especially when I hear, "give us money to find a cure for cancer" I wonder who it is that thinks they know what that means. I do have a cynical side.

So, here I am. One year passed, 18mos passed, and now 2 years. My cancer has grown slightly although the drug combo trial I am on showed tiny shrinkage 3 months ago. There may be tiny cancer spots on a couple of my bones. They may want to put me on an additional chemo drug for that. However, I most certainly am not dead. Not in a box. I have not passed (please do not ever use that term about me). I am still with us, involved, useful and grateful to still be kicking.

Only recently has it sunk into my head that this process could go on for years. One, two, five, ten? Current drugs still cannot cure it nor even stop it, but they sure seem to keep things slow growing. Maybe a cure will be developed within those possible years. I hope so. In the mean time, what is my life about? If I have only 6 or 7 hours per day, half a.m. and half pm, then what can I do with those hours. The hours are a little bit predictable and a little bit regular. Sometimes I am just out of it for a whole day or two.

Some who read this tend to think I need to be told that I need to eat right, or meditate more, or pray more, or think positive. Some have indirectly or directly implied that if I do things right then I can cure this cancer. Or, if I had lived right I would not even have cancer. What do they really mean by those words and implications? That it could never happen to you and if it did you could fix it? Come on, give all a break when we suffer a human malady. "I am here by God's grace and mercy, I ain't with no controversy."

Somehow that leads me back around to what is my life about? What can I do? Each hour of each day I can do the best I can. I can ask for help, from up on high or even at a homeless shelter. I can give whatever I can. I can seek patience, tolerance, wonder and awe at how joyous so much of my surroundings are. I can become more honest and gently direct in my communications. Do we really need elephants in the living room that no one talks about?

What can I do? I could just be stuck in fear and sad and anger. Or,I can continue being part of the medical community PRACTICING medicine. I can seek all the qualities and spiritual principles that add up to gratitude and love. I can enjoy efforts at being a kind, gentle and loving man living a wondrous life with wondrous relationships. I can relish the moments of humility being Bill Banana, one of the bunch.
Bill

Try to Write

2010-12-15T13:47:00.000-08:00

3 people worked me over at dinner last evening about not blogging much. I said I just have not had much to say and did not know how to start when I do want to say something. Jacki said, and she is right as usual, to just sit down and put my fingers on the keyboard and see what happens. So . . .

I know that part of what holds me back is knowing that to really put myself into this blog, I must tell the full story. Yes, I have cancer, it is currently uncurable and side effects of the chemo/poisons I take to slow the growth are often near intolerable. I started the everyday little white pill in April 2009 and the life commanding side effects have ruled much of my time and efforts since. In July this year my case became part of a drug study combining the Tarceva pill with Avastin which goes in my arm every other week. The two drugs together have given a tiny bit of shrinkage and added hope. Diagnosis and medical intervention.

The Avastin immediately gave me high blood pressure and so I take two more drugs to manage my BP.

The rest of the story includes serious chronic clinical depression. Looking back there are some signs of this even back into adolescence. The social security reports we all get every year shows dramatic swings in my income just as one fiscal indicator. The dollars vary from well over $100k a few years to $0.00 in a few other years. Five marriages might suggest some undiscovered malfunction. Only in 2002 did I begin to end my denial of my own depression. I remember before even ridiculing people who claimed clinical depression. One of those people committed suicide soon after my ridicule. I know I did not cause it, but I sure did not help.

My depression was never the frequent suicidal thoughts - never gave that more than a passing thought, but was aware that I could go there. My depression instead is felt much more physical, a "slogging through mud" feeling that just would not lift. I missed many days of work and backed out of invites and commitments frequently. It is very hard to explain and still is shrouded with shame, but there came a time when I just knew something was broken and beyond denial. Someone gave me a helpful analogy: when an arm is broken we put it in a cast allowing it to heal. When an organ is malfunctioning, we treat it with medicine and diet, exercise, etc. Well, guess what, the brain is an organ and medicine, diet, exercise and relationships can be the healing cast.

Through trial and error, my specialist and I found the drug that best manages my depression - maybe slogging in water now but not mud. She says I am a light weight, impacted by very small changes in dosage. Diagnosis and medical intervention.

Now, a big part of why I have had difficult time blogging and getting real: way before diagnosis of depression and even longer before cancer, I was a drug abuser - an addict. Writing this breaks my anonymity and I am not sure all who read this are my friends.

In early January I will have been clean for 17 years. I used "moderately" for 21 years. Can lying everyday to cover my everyday use be called "moderate"? And then I found a go-fast drug that took me down fast and hard in just 4 more years. I am talking acre horse property in north Scottsdale, pool, big house, pretty cars, all the way down to homeless, doing anything for a hit and disconnected from all who love me. The journey back from there, via a wonderful 12 step program, and building a relationship with God as I understand God, has led to an awesome 17 years of recovery and gratitude that even cancer has not taken away.

If life was fair, due to addiction, I would have been dead 17 years ago. Instead my life has become renewed, relationships repaired. I am a great Dad and I have even learned to be a good husband madly in love with my wife. I have learned it is better to be kind than to be right.

This part of my story, the recovery of my life, is the part that makes me cry. Gratitude tears. Gratitude for the grace that has given me 17 years of life beyond my expectations. This is the part of my story that depression has not been able to spoil. It is the part that cancer wants to take away giving me great sadness for what it seems I must lose - great sadness for the loss those in my life will feel. I can only imagine the grieving my wife will experience because I am so loved by her. My daughter - I know what it is like to lose my father when he was just 61.

There is sadness and fear, but even bigger is my hope for medical advancement. Bigger is my faith that all your prayers are effective. I know that God's will is being done as I write. Biggest of all, is my gratitude for what I have been given and for my desire to keep giving it away. Maybe writing this blog helps me do just that.
Bill

Results?

2010-11-27T12:23:00.000-08:00

From in the air somewhere over probably Colorado. I had the Avastin infusion yesterday, and turkey dinner today at Jacki’s sponsee sister’s home.thefirst was (and remains a bear) and the 2nd was a delight. My appetite is less these days. I have lost 16 pounds sonce 4/09, mostly muscle mass. I wear suspenders now because cinching my belt was no longer enough to hold up my pants – the no-belt prison look with my back pockets at my knees.

I had plans last night to do a meeting and a recovery Thanksgiving pot-luck. After the seeming ordeal yesterday,I was way too sapped of energy to go anywhere nor do anything. Pretty much zoned mindlessly watching TV. Jacki says I am depressed for a few days after each bi-weekly infusion. For sure this time she is right. I feel so down. Part of it is worn out, part is the drug(s). I am sure in a couple days I will feel better.

Meanwhile, feeling this way is just part of the journey. Some days it just gets to me more than others. This trip is one of the now bi-monthly trips I make for restaging visits. Restagiing means tests and samples and scans, CTs, MRIs and PET. The PET is rough because I must not eat nor drink anything for 6 hours before. The Pet this time was scheduled for Tuesday so I ate naught prior to noon. And then 1pm. And then 2pm when they decided the machine was disabled until tomorrow. So on Wed I got to eat nothing again until about 4.

Now it is Saturday, 3 days after the infusion. Feel better except I have a cold. Nose running faster than I can keep up. Drip.

In my head it is busy with what ifs. The results of the scans were, "No change, no growth, no shrinkage." "However, we do see a small spot on your hip of something with activity going on around it. Probably is nothing, but it may be a good idea to start an additional medication just in case." "Probably is nothing". You can guess where my head went, and the thought of yet another medication dripped into my arm for an hour once a week - well let's just say fear, anger and resentment poured into my thinking. Let's just wait 'til the next restaging in January and see what those scans and tests say.

It is still Saturday and I am in the grip of infusion effects, fear of the spot, fatigue from the whole process - I am tired of this! And in the grip of my first cold in a couple years. This to shall pass?
Bill

Rock and spin or roll and flow

2010-11-20T19:40:00.000-08:00

Recently I have done a guided imagery meditation that I learned 35 yrs ago. It always led me to lying on a small sand bar between 2 boulders and more high boulders across the stream. I was sheltered, safe and lying in the sun. The stream carried me to that place, just as in the hundreds of times over the years of doing that same meditation. Using my God given built in meditation tools, breathing and imagination, I have reached that peaceful and safe place many times. Less frequently the past few years, caught up in life on life's terms. Distractions away from the gift and practice of something so good and replenishing - I had forgotten.

Recently though, almost by accident, I slipped into the little boat and rode the stream that has always taken me to the sand bar. This time, lying basking in the sun, I had the thought of getting back in the boat to see where the stream goes. Around the bend a beautiful garden-like vista of green and light and gently flowing water leading to what appears to be a small pond but impassable due to a damn of sticks and branches, logs and brush. In that moment I just plain knew that dam is my cancer. It has been a beautiful ride, but no way past this damn dam.

And then, I see this is a beaver dam with busy little beavers slapping the water with their tails and fortifying the damn. In despair a deep moaning howl escapes my throat, attracting the attention of the much larger and wiser old Mother beaver. She takes my hand and pulls me under, guiding me under water to the beavers den - a small dome-like shelter still under the dam but with space to breath and rest above the water. She showed me that I could just ride the boat to this point only to sit dammed in by my cancer. A beautiful journey ending here. I can relive the journey over and over, but still end up here. I can be grateful for the boat and the stream, the sun and the sand bar, the cavern with the floor of river rock crunching as I walk to the stream and find the boat. I can enjoy the mystery of the entrance from the back of my closet to the winding stone stairwell leading to the cavern of many colors.

Indeed I can feel gratitude for every single heartbeat of living that eventually has led me to the sandbar and now to the beaver dam. I can stop here and maybe help move some twigs and branches, even logs. Maybe the dam can be broken. But then the Mother beaver takes my hand again, pulling my from the den, under water and up to the surface where the water flows, as with all dams, over the lip of the damn dam. I can catch glimpses of what lies downstream but I cannot flow nor climb over this obstruction. The wise old Mother beaver tells me there is no way around but through. What?

This still, after several more imagery journeys, leaves me perplexed. "What the heck is she talking about." I do know the glimpses are hope and with that hope I can still find enough faith to keep paddling, swimming, hold my breath and trusting wise old beavers and doctors and above all else, trust the God of my own understanding. I have been helped along this far and I'll not be dropped now.

Jacki and I leave in the morning for Bethesda and another round of poke, prod and probe, scanning for changes in my tumors. Last time there was a tiny bit of shrinkage. Thank you for your prayers.
Bill

Comparing a few notes

2010-11-11T16:37:00.000-08:00

Again, writing my blog and writing to others effected by the same cancer type, seem to feel the same to me, so I put this one in the blog.

Say Hey Matt, I did not even see that I had a reply from you until just now. I had another infusion of Avastin today. I think this is the 7th. I recall the first almost giving me a lift for a couple hours after, but now it just kicks my butt for 2 - 4 days. Since the previous infusion I have been fatigued all but 5 or 6 hours each day and even then I get uncontrollably drowsy and have to, HAVE to, get horizontal for a while.

I cannot imagine what this must be like for your daughters. My 27 yr old daughter has been a trooper and very helpful and supportive, but I also think she blocks it out most of the time. That's the thing about this type of cancer, it just drags on and on. I still feel no direct effect of the cancer itself, well maybe some breathing difficulty, so I sometimes wonder, "Will my life be like this for 5 or 10 years, or will the cancer suddenly take me south in a few months?" I imagine for our daughters it must be like having to watch wheat grow on an active California fault line waiting for the earthquake.

I have been told the Avastin costs about $5000 per two week dose, and the Tarceva is about $100 a day. I cannot imagine how anyone outside some research project could be on these drugs which seem to be the only thing that works on our type of cancer. To be having to fight with insurance companies on top of cancer's emotional drain - I can only sense a dread.

So the medication adds up to about $13,000 per month. My brain comes up with things like, should we in America spend that much to prolong a life? And of course, that thought is supported by, "Am I worth it?" Thank God I do not have to answer those questions now. I am extremely grateful for me personally being blessed with my treatment, and I feel so very sorry for so many in the USA who are not allowed this or other treatments because of money. I think I will stop here before getting on my healthcare soap box.
Bill

Not the only one

2010-11-07T19:22:00.000-08:00

I am not the only mPRCC case. It is quite unusual, but I do communicate a little with others in the same boat. Often they seem focused on technical terms and acronyms while searching for THE answer. We all have different ways of dealing with the immediate and continuous losses as cancer steals the lives we used to have. My own narrow viewing often fails to notice the new and different life evolving around me. The possibility of dying and suffering is always over my shoulder, but this is just not all bad. The profound gratitude for my life to date balances the grief and heartache.

Within the diagnosis of PRCC are several variants. Mine is not hereditary. I get other terms for other colors of this deadly, to date incurable, PRCC. Mine I like to think of as a quirky curveball kind of PRCC. I have seen the term sporadic in a few references, but the narrow field of study is still missing exact parameters. I received a letter that asked if my type is sporadic and here is my hopefully compassionate response:

There seems to be nothing sporadic about my mPRCC, but then I really do not know what sporadic means in this context. I have chosen to focus more on relationships with wife, daughter, family and good friends. I remain amazed at the depth and quality I get to experience with those closest to me. It seems each morning I awake with a small box of energy and so I am very selective in allocating and I consciously choose giving and receiving in those relationships.

My search for treatment began with Mayo Clinic right here in my own backyard. They misdiagnosed and said I probably had 18mos - 2yrs. 2nd opinion was with a supposed expert PRCC pathologist at UofAz Med Center. I went on Tarceva April 2009 and saw what I guess is very slow (but steady) growth. The 9cm tumor on my kidney was a coin flip about cutting out. Still have it.

Soon after I began my own research to find work being done on this exact type of cell. XL880 seemed effective for hereditary but not my type and I was too late anyway. As I continued my search for expertise, all roads eventually led to NIH and here I am, 22 months since that first revealing scan. I believe that NIH has more experience on exactly mPRCC than any where else in the world. The fact that insurance companies are not manipulating treatment at NIH/NCI gives even more credibility. Consciously I decided to trust them on technical issues and focus more on my own areas of expertise - living and enjoying every little bit of life I can notice.

Maybe the hardest part of the whole experience has been watching my caregiver, my wife, go through just as much pain and loss and fear and personal horror. I have watched her age 5 or 6 years in the past two. I know she tries to protect me from how hard she is hit and I try to protect her from how hard I am hit. We always end up in each others arms getting real and crying for a few minutes and then we are good for 2 or 3 weeks.

Writing this blog has always been cathartic, and so is writing back to people in the same boat. Emailing or blogging about what this is like for me are similar efforts to me, so todays blog has some of both. It helps me and hopefully others as well. Beyond that I can send some prayers your way.
Bill

5

2010-11-05T16:34:00.000-07:00

Measuring change, growth or shrinkage in the tumor on my kidney is very difficult - nigh on impossible. It is shaped too irregular. I said early on that it is about the size of a baseball.That is about right, except from another angle it looks more like a bean - it is an irregularly shaped mass attached to my right kidney. I once saw a picture of a papillary renal cell carcinoma (my type) and it looked a little like a geode broken open and showing ugly crystals within. I have learned that most of this mass is comprised of dead cells - I believe the term is necrotic.

So, how do the docs at NIH/NCI measure changes? They picked 5 of the largest nodules in my lungs. Remember way back in January 2009 the first radiologist reported too many nodules to count? They are smaller than the kidney tumor and easier to measure change. Those 5 nodules of metastatic kidney cancer are my baseline tumors measuring change in size. At the end of my second cycle those 5 tumors showed a 1 to 3MM shrinkage. Not very much, but the first time in 22 months I heard the word shrinkage

That was wonderful news, giving us hope and determination to withstand the side affects of my combination of very powerful drugs. I was discouraged and for the first week since diagnosis considered (privately) stopping the treatment. The word shrinkage ended any real thought of stopping.

Even better! I communicate some with a very few patients with same type of cells. She started the same protocol a month before me. Her recent measurements show some shrinkage and "disappearance" of a few of the smaller metastatic nodules. Dude!~ Now I am almost eager (one foot on ground Bill) for my next bi-monthly end of cycle scans. Thanksgiving week. Good timing, eh?
Bill

Wee bit o' shrinkage

2010-10-05T15:54:00.000-07:00

Yes!!! Good news! After 20 months of scans showing tiny growth every time, The doc said "significant shrinkage". Let's say 3 MM shrinkage or 0.11811 inches in two months since starting the drug protocol at NIH. Not that I would ever project, but at that rate, in another 20 months the lung tumors would be gone. Ohh, to be able to say, "Making a comeback!"

Day to day reality is still here. The second medicine, infused (dripped) into my arm, has magnified the previous symptoms and thrown in a couple new ones. I am tired and wobbly, short attention span, sketchy thinking, cannot drive. You don't want me on the road about 8 of my awake hours each day. Now I get sporadic high BP, bloody nose, mild 2 step in and out of the Loo. I want rolls of Charmin for Christmas.

But, ya know what? We have SHRINKAGE!

Today is Tuesday. I went to a meeting last evening for the first time since . . . two weeks ago. I have isolated and felt depressed much of the time. My face has been so broken out with the acne-like rash that I was afraid to be seen. My sponsor would call that "overly concerned with looking good." Oh well.

I have not blogged in two weeks. Plenty to say, but I did not to want to write one like the last. I do not even want some of the thoughts from the last blog. Quitting the treatment and thereby getting rid of most of the side effects, thereby getting some of my old life back - you bet I think and fantasize of quitting and going back to the bliss of not knowing. Maybe I will do that one day. But not now. I think with your help and prayers that I can make it another twenty months. It's not just me, I know it's We.
Bill

Chin up?

2010-09-18T13:19:00.000-07:00

Sometimes it just won't lift up. Sometimes this cancer stuff grabs me by the cajones and drags me through all the emotions and thoughts that I do not want to feel nor acknowledge. I do not know if cancer is winning some kind of battle here or if the solution is taking so much away that I question the balance of value. The medication I take to find a solution for my peculiar type of cancer cell is removing me. Me. My self perception, my life activities, my physical abilities to do things as simple as walk.

My ability to interact with my loved ones and others so close to me is now so passive. I sit and hope someone will feel comfortable enough to come over and hug what to me feels like bones with a belly. Some who have not seen me is a while show a flicker of shock or maybe a flicker of sadness. Lately my stamina is good for maybe an hour or two before I have to - HAVE TO - get horizontal and just chill. Sometimes I just do not want to be seen like this.

Before I was diagnosed, back when I knew nothing of this thing growing inside, I was riding my bike avidly and in the best physical shape in a dozen years, maybe more. Jacki and I were social, I mean we had more people in our home for cookouts or whatever than our small place can hold. Often I was the lead cook although I needed help to flip omelets. My recovery was in full swing, not over doing it, but actively involved in service and sponsoring. My relationship with my wife was of the quality, fullness, love and closeness lifelong sought.

Loss. Grief. I miss my life as it was. Has cancer taken this away or is it the treatment? The tumors have grown slowly for near two years since detected. Were they not growing slowly before discovered? Have they grown more slowly with the thief we call treatment? Where would my life be if I were still in the dark about my cancer? What would my life be like if I had said no to the treatments? If I stopped treatment what pieces would I get back in quality of life?

Jacki reminds me that the small windows of activity are smaller for a few days after each infusion of the additional drug and the consequent blood pressure drugs. Even if she is not just making stuff up in trying to make me feel better, the damn windows are too small right now!!! I want some respite from the feeling of helplessness that has come the last few days. The "medicine" is ruling my life. Today it is even chairing the meeting of the characters in my head.

Some days or parts of days, my chin is not up. Faking it too often is stuffing that which gets pissed off when left in the dark. Some days are just like this. Fulling feeling the price I and my loved ones pay for treating what is horrible enough on its own. I am not backing out of the drug trial. I am not giving the cancer a straight shot to killing me. I can deal with the symptoms with the help of my God and those who love me and those who at best can only react with a flicker when they see me after a period of time. Even they help with their human emotion and bits of prayer.

At this moment I can find gratitude. but I do not want to write about that right now.

Next week Jacki and I go back to Bethesda and the National Cancer institute for a few days of tests, scans and measurements. The purpose of that trip is looking for the impact so far of two very powerful drugs on my metPRCC and then another infusion. Thanks for going along for the ride.

This one gets published raw, without review.
Bill

Gentler

2010-09-08T14:59:00.000-07:00

Two questions I have learned to ask are, "How long have you been hard on yourself?" and following the answer, "How is that working?" Must I forever feel not enough and lacking what it takes to be okay? My yardstick used to be measurements of money, house, pool, car, horses and prestige. I could drive a beautiful car, see someone drive a better car and feel less than. I required perfecting of myself - perfection, number 1, best in class, etc. The truth is, I still would not recognize perfection if it walked right in front of me. By requiring perfection I never measure up, I am never enough. I must arrogantly disagree with my God who created as he saw fit. When I complain about me, I am complaining about God's handiwork; I am saying I know better than God.

So, most of my life I have been far too hard on myself and some rather bizarre behaviors resulted from feeling not enough. Today I can be gentler with myself and use a different yardstick, one using spiritual assets instead of things.

I responded to a friend today, and found what I was being gentle with myself while writing. Absent is my too often used negative self talk. I spoke not hard on myself but rather speaking good of myself. It is not bragging nor conceited but rather toward where God has pulled me.

Sometimes today I can be gentle with myself. Still what I wrote back to my friend Lee was difficult to write and required tears. Here it is:

Thank you Lee, for the kind words and encouragement. You had an impact on me as well! As you put it, “No bullshit!!” (;-)

The woman thing: my experience over the years has been to change enough on the insides (in my case by doing the full NA deal) to become the kind of guy, the woman I was lookin’ for, was lookin’ for.

Tithing: for me is “I can’t keep what I have unless I give it away.” I have given much money away. But it not just money. A book that many find helpful is the Bible. In that book it says over 1300 times to help those less fortunate. One thousand, three hundred times. There are many ways to give as you know, and my hunch is you are way too conservative in weighing how much you do give and how much you could give. Do I really have anything better to do than give?

Popular? I do know that I am part of a huge community many of whom will not leave me alone. Now that is a Cadillac problem to have and I am blessed in many ways, including my health. If life was fair, I would literally have died near 17 years ago. Instead I have been given many wonderful years of fullness in life. Joy and happiness, sadness and grief, success and failure – all required to get me where I am today. I have the closeness I always wanted in my marriage with Jacki. My daughter is a woman I admire, and she comes to me first with some of life’s curveballs. With my family, both blood and recovery, I am able to receive what they give and I am able to give without measuring or keeping score.

Where I am today, is a man who knows it is better to be kind than to be right. I still fall far short of being the man I wanted to be, but I am and always have been a man who God made and loves. What more could I ask?
Bill

Just an Update

2010-09-07T16:08:00.000-07:00

I have not felt creative enough to write how I like to write this thing, so here is a basic update.

Last week I went to Maryland again for my 3rd infusion of the additional drug, Avastin. Kate went with and spoiled me with loving, attentive care. Never before have she and I had so much time together - we were apart maybe a total of 4 or 5 hours in 6 days. Still we get along and I feel closer and evermore admiration for this 26 year old woman who is my daughter.

On Thursday I got the infusion - liquid with Avastin in it, dripping into my arm through a needle. It took a half hour. Like the first infusion a month ago, I felt energized after and we did the tourist thing for several hours. Lincoln, Washington, Viet Nam, White House and Capitol. We stood at Lincoln Memorial on the same steps where Martin Luther King gave his "I Have a Dream" speech. Someone else arrogantly speechified on those same steps just a few days before, but even that could not spoil the reverence exuding from the memorial and those steps.

The next infusion is the 16th at my oncologist's here in Arizona. And then, two weeks later I go to Maryland for end of first course scans to measure impact of the two drugs combined. I will tell you this, meeting with 2 or three standing doctors in a small exam room with me sitting down - I felt like a specimen. Next time, we are meeting around a table, eye to eye. I am human and require that much dignity - the specimen bit just doesn't cut it.

Please pray for me, I am more tired, less stamina and . . . oh yeah, walking far across the Capitol mall in DC with the side effect of mild diarrhea is a dangerous challenge. TMI?
Bill

Inspire

2010-08-29T15:58:00.000-07:00

1. (9) inspire, animate, invigorate, enliven, exalt
(heighten or intensify; "These paintings exalt the imagination")

4. (1) cheer, root on, inspire, urge, urge on, exhort, pep up
(spur on or encourage especially by cheers and shouts; "The crowd cheered the demonstrating strikers")

Today I received a note of encouragement from a friend who had a large marble sized tumor at the base of her brain. The thought of cancer in my brain scares me; I think that must be the worst. She must have energy sapping radiation which thankfully I have not had to do. I have always been inspired watching her ski as I try to keep up and match the vibrant, vigorous and animated joy she can radiate. My hunch is that radiation kicks her tumor better than the medical version.

So today I have a little Reba in me to help lift me out of the daily physical funk that steals my afternoons.

The definitions of inspire above do not quite make clear the most powerful method of inspiration, that demonstrated by example. Today I am much more likely to notice the example of those around my life who are walking through physical, mental, emotional and/or spiritual challenges. Some walk with a grace I aspire to, and others crawl because they no longer can walk. Occasionally I get to share with those human examples a moment of intimate grace, breathing hope and gratitude for life to each other. When I am paying attention and step out of my self, I can notice those moments. Thank you Reba.

Tuesday my daughter Kate and I fly to Bethesda, MD for my blood work Wed and third infusion on Thursday. We are staying to Sunday for father-daughter tourist time in DC.
My obsessing brain wants to figure out all the logistics of timing my energy hours with getting around the subway and walking around the monuments, museums, etc. Go with the flow Bill. Kate on the other hand just wants time with Dad and I don't think she much cares what we do. Having gone a couple times for these infusions by myself, I can tell you that I have learned my lesson: do not go by myself. Thank you Kate.

The additional cancer drug and consequent blood pressure drugs have tried to kick my butt, and they have come close a couple times. That is when all of you kick in with your examples and cheers and prayers and encouragement. You inspire me!
Bill

2nd infusion

2010-08-22T16:06:00.000-07:00

The elation I felt for 24 hours after 1st infusion has definitely become an evolving routine of sleep, up and active 3 or 4 hours in the morning and 3 or 4 active hours in the evening. My 3 - 5 hour afternoon period of being down and "hinky" has now stretched to 5 - 7 hours. Adding a second drug to treat cancer and two drugs to treat the high blood pressure side effect has doscumbibulated my body. (I twisted that word around, but I LIKE IT!) I have read myself to sleep almost everyday since boyhood, but now the light goes off as I knee into bed. Readily fatigued now accompanies most of my day and driving is pretty much out.

Hopefully this part of my picture is mostly my body adjusting to powerful drugs and it will get better. My attitude remains mostly of gratitude and hope.

I went back to Maryland for the second infusion - left on Tuesday and returned on Thursday. To me that was in and out: fly early Tue, arrive there 3ish, shuttle to NIH by 4pm and then to nearby hotel. On wed, I get blood drawn, pee in a cup, and early Thu with results I go in for consultation with research team followed by hour long infusion. The last shuttle to the airport was at 2:30 and I got there at 2:29.

So now, the travel people want me to do this in Wed and out Thu. It is nigh on impossible to catch flights that could allow that to happen. Maybe red-eye flights could give them a one night turn around, but even the two night wiped me out. Guess where these bright ideas begin: bean counters upstairs.

The third infusion in two more weeks will be there and then I will do one one with my oncologist here. My daughter Kate insists on going with me for number 3 so we bought her ticket with intention of staying a couple extra days to hang father-daughter as tourists in our nation's capitol. However, NIH pays for my trip only for days of service and staying longer does not fit regulations. Whatever, I, Bill G will figure out how to make this happen my way! Uh ohhhhhhhhh, troublesome words. Okay, I will ask for help from HP in navigating bureaucratic regs.

I'm tired now so I'm gonna stop.
Bill

Laughter

2010-08-16T15:00:00.001-07:00

My mom beat non Hodgkins Lymphoma twice, once a couple years ago but first about 15 years ago. I remember her telling me about a couple non medical tools she used. Guided imagery: a white knight riding his big white horse through the cancer cells and killing them like moles with his shiny sword.

Laughter therapy: watching comedies, telling and hearing jokes and even fake laughing causes our bodies to release feel good healing chemicals. Which leads me to my experience with cancer and laughing and smiling. I have heard zero cancer humor. I have walked the halls of Mayo Clinic, my oncologists office and now at NIH where I return tomorrow.

The only joke I have heard is: "What do you call a waiting room full of people talking about their maladies?" . . . . "An organ recital!" A lot of folks don't even get it. Sometimes if I tell it I get a looks of disapproval. Disapproval not because I am humorous at the wrong time, but rather most anytime I am around cancer patients. A doctor in her closed little room with me commented how refreshing it was to hear a patient express a sense of humor.

At times I do deal with uncomfortable situation with humor - it can be a method of keeping others off guard and at a distance. But other times for me it is just a human way to find light in a very dark piece of life. Grieving needs a break and it turns out taking that break is healthy. Maybe I can mostly just let loose a contagious smile here and there. I need to laugh.

Since receiving the additional drug, Avastin (Bevacizumab Injection) 2 weeks ago I have felt several old symptoms with a new twist and a couple new symptoms (side effects). My blood pressure became a problem 2 days after injection. 192/104 highest so far as measured by the cuff they sent home with me.

I called the NIH doctor on call, he got back to me in minutes and asked me to begin the blood pressure (BP) med they sent home with me. A few hours later the head of the entire project walked me through adding a second BP drug and monitored my status from 2 thousand miles away. By 11:30pm his time Sunday night, finally the cuff showed a BP of 138/80 and we said good night. Safe, and I have his cell number. He and all the medical staff - I believe my God is working through their hands to help me and the next guy to heal. Thank you!

Since that first Sunday after the first injection I have been dealing with what time is best to take each drug I am on: Tarceva the chemo drug; a preventive type inhaler drug; Lamictal for depression and two BP drugs. That means the pill schedule I use to deal with fatigue/sleeping, mental fogginess, decreased balance, mild diarrhea and the reverse, flushed face and acne, has to change. What I combine and take when has an impact on my functionality at different segments of the day.

I'm not whining, just saying so you know why my mood changes or my voice sounds off or if I wal funny. Beyond that I am so very grateful my chemo does not cause debilitating sickness - I know many have it worse. And yes, Chemo is still my friend.
Bill

First Infusion

2010-08-09T22:13:00.000-07:00

Our National Institute of Health (NIH) in Bethesda, MD, is something all Americans can feel good about. More medical advances than anywhere else in the world are developed here. It is my good fortune to be part of a research project testing the use of two drugs together to treat my highly unusual type of cancer.

The drug I have already been of for 1 1/2 years, Tarceva, is the one I have called my "little white pill". It is designed to poison my cancer cells and it does just that. The problem is that it also poisons other parts of my body and it does not kill all the cancer, just enough to make it grow slowly. Slow it has grown, but grow it has and without an additional intervention will at some point be fatal. Hence the reason I tried so hard these past moths to get into the the drug trial at NIH.

Last week I was at NIH for 4 days for poking, prodding, sticking scanning and analyzing. Throw in enough waiting to drive me nuts (short drive) and the first 3 days were full and wore me out. But then . . . . then . . . finally after all the effort I received my first infusion (means shoot up or IV delivery). I was anxious, scared, excited, willing, trusting, sitting in a laid back medical chair waiting while the additional drug was mixed. This drug, Avastin, is designed to cut of the blood supply to cancer cells. Apparently it is expensive so they don't mix it until I actually show up.

They injected it slowly to help watch for adverse reactions - 90 minutes. I dozed a little. And then it was done. I felt some elation, not too much, but definitely an up sense of accomplishment and hope. I rode the shuttle 2 miles back to my hotel, but feeling too good to sit, I went walking in the rain. Yup, I am from Arizona, but I did have an umbrella. Just happened to walk past a Sushi bar - total accident I am sure, but "as Long as I am here" . . . I felt like celebrating and I thoroughly enjoyed every bite!!

I slept well that night and packed for the plane home the next morning. 5 hour flight but passed quickly with good conversation with row mates. Flight was good and it was beyond awesome to see Jacki, I'm talkin' good to the bone and beyond. And then at home a couple hours later, one of their forewarned side effects kicked in - they even sent me home with a blood pressure cuff. I had high blood pressure for the first time in my life.

The doctor on call Friday night gave me good direction and my BP went down enough to go to sleep, but in the morning it was higher again. I called the on call doc again and he said he was going to call Dr Srinivasan, the Head of Research on this project. The guy called me. He walked me through the entire rest of the day, adding small doses of BP medicine as we went, until at 8:30pm my time, ll:30pm his time, my BP was again low enough to feel safe sleeping. At the beginning of the day, I was clueless about high BP - scared. At the end, I knew he cared and was there for me and I felt safe. I have his personal cell number.

I know I have the chronology a little wrong, but the bottom line is the BP symptom started sooner than expected. They stepped up to the plate and hit a home run for me. I am being treated by highly trained medical professionals doing what they love to do, and getting to do it unhampered by insurance companies. The difference in care from this patient's perspective, between the people at NIH and my insurancized (made that one up) oncologist is . . . well . . . like love or money. Thanks!

I keep taking the little white pill, I get and infusion of Avastin every two weeks. The drug trial question then is, are the two drugs together successful enough to warrant going through the side effects. I am game, and your prayers are requested and welcomed, I love you too!
Bill

scheduled to fly

2010-07-27T13:16:00.000-07:00

After what seems an interminable wait (actually about 2 1/2 weeks) I am now am ticketed to fly and scans and such are scheduled. Fly this Sunday, tests Mon, Tue, wed and first dose of the new drug on thursday. Fly home on Friday.

Largely at my insistence Jacki is not going this time due to finances and it looks like this trip will be relatively simple. Even the reaction to the new drug is supposed to be mild. If it is not I can stay longer. Still, she is torn up and I beg your help for her anyway you can, ie, calls and prayers.

I have been on edge more than in a long time. I have been self centered, impatient and opinionated, needing to be right and sacrificing kindness. I have not been gentle with myself nor others. Sure, much of the time those statements have not been true, but it does harm to myself, others and my relations with you when I act that way.

Falling short of my lofty desire to walk through this challenge as a Spiritual giant leaves me with high levels of oft' times uncomfortable humility. I am a human who has learned to ask forgiveness from my God and you and get back on my side. Thank you so much for your love, compassion and patience.

And God, thank you for this opportunity to help find a cure for PRCC.
Bill

Scheduling

2010-07-18T15:04:00.000-07:00

All through this process since initial contact with the NIH, tomorrow has meant "at some future date" usually within a few days. A few weeks ago when I was there and had the biopsy, I was told I would hear results in a week. Turned out to be 11 days. Now, las Tuesday I was told the schedule for my trip to Bethesda would be ready by Friday. 2 days ago. Dare I hope for tomorrow? Hope.

A meeting topic a couple days ago was hope. We drew tickets to determine who shares next (that way God is in charge?). It was slow sharing. Those in the room, recovering drug addicts all, seemed to have very little to say on the topic. A few with drawn tickets passed. Some tickets drawn went unacknowledged. Those who talked had pretty short shares. We who by any earthly definition of fair would be long dead, instead sitting in a room of similar survivors with little to say about hope.

I have for all my adult life had something to say about most anything. But I do remember stumbling on sharing my experience of hope. Using an active sense of the word, "hoping" might be easier to talk about. My handiest dictionary gives one meaning of "hoping" as "go for, plan, be after". Next time the topic is hope I think I will talk about hoping - I know some about go for it and get after it!

Back to present feeling of impatience mixed with fear, resentment, judging - the usual suspects. I hoped last week for schedule done by Friday as she said. Instead the weekend has been too much of the disappointed let down words. Speaking well of myself I have also mixed in patience, understanding, compassion with the other less appealing attitudinal shortcomings. If I want to have a good day it helps to start by lowering my expectations of others.

So, I hope to "get after" scheduling and maybe packing my bags on the morrow. When I do go the action plan is to get scans - CT, brain, PET, cardio, little toe and other assorted pokings and proddings. All to establish a baseline of my physical self to begin my little part of this scientific research project on how to cure papillary renal cell carcinoma metastasized into my lungs. At the least I can be of service to the next guy, and I HOPE it works for me.
Bill

I am In!!!

2010-07-09T10:08:00.000-07:00

Just got off the phone with my lead Doc at NIH - I am in the trial!!! I go back to Bethesda soon for initial comparative tests, ct scan, brain scan, pet scan - the works.

I sent text to Jacki saying, "It's all gonna turn out good Baby. I am with you for a long time and lots more loving you!"

Relief, joy, hope, humility and gratitude are filling me up!!! Sure, a long road on the trial is ahead, but I have a great sense of being one of the early successes in this new treatment for mPRCC. Thank all of you for your prayers and thank God for the opportunity to be part of the solution for this "untreatable" form of cancer! I am too excited to sit, gotta go!
Bill

delay

2010-07-07T09:30:00.000-07:00

Direct quote this morning from Chief Nurse of the drug trial,

"I wish I had the answer today, but we hope to review pathology this week on your biopsy. We will contact you as soon as we review."

Certainly this is an opportunity to practice faith trust and patience. However, each episode of this drama raises a little hope followed by a week of waiting for the next. Could we at least get some comedies with Super Bowl advertisements in between?

"Take away my fears and doubts so that I may better demonstrate Your presemce in my life."
Bill

Ready for news

2010-07-05T23:31:00.000-07:00

Went to Bethesda two weeks ago. Had a needle in the kidney biopsy 12 days a go. Because the drug trial is a scientific research project, they must determine type of cancer for themselves rather than rely on the highly invasive biopsy 18 mos ago. Results expected Tue or Wed this week. If type of cancer cell is as previously diagnosed, then we will learn the plan. If is a different type of cell, then NIH said they are interested in my case anyway - whatever that means.

Since the biopsy I have learned my monthly COBRA payment for health insurance goes this month from $360 to $840. COBRA lasts three more months, and then BCBS is required to sell me individual insurance - at whatever fee they deem appropriate. Hmmmmmmmmmm, I wonder how much?

I will let you know as I hear more this week. My bags are packed.
Bill

NIH - Bethesda, MD - DC

2010-06-24T14:29:00.000-07:00

We arrived Monday nite late - given the 3 hour time difference, it wass really late. Checked into this funky little hotel near NIH with a shuttle that runs to and from. The hotel? Very nice architecture, nicely furnished, good bed and shower. Both drains drain. Good sheets. And then we get to the cost cutting measures: thin towels, motel six soap, no hot water at night. A bit shaky elevator; view of the building next door. Of course, it costs about 1/3 as much as the nicer places. Some good, some bad, inexpensive, we'll take it.

I'd guess within a mile there are 15 different ethnic restaurants. Two miles away we found my favorite salad bar ever. Organic, vegan, or chicken/tuna. Did you know falafel is a great source of protein?

We had Tuesday to get the lay of the land and went to the Viet nam Memorial Wall, and the Lincoln monument. I cannot describe the welling up of a feeling of what? Patriotism. A proud sense of our own history as well as the sacrifices made. Whatever political stance or sense of right and wrong, these monuments stand for something gut level important. As a nation we have not always done the right thing, but our soldiers have died for our ability to try and get it right. I was amazed at how standing in the presence of so much history overwhelmed me.

NIH. National Institute of health. This is a government run center for medical research. Already we have me people with numerous types of cancer cells destructively wandering around in our bodies. The chins are up I think because we all know we are doing something good, perhaps for ourselves, but for sure for the next guy. The people who work at NIH: nurses, doctors, research statisticians, cafeteria, drivers, security, on and on, all seem full of a positive attitude of doing something good. We see medical personnel, some of the best in their field, unfettered by insurance companies, and allowed to put patient care first. How much money they make set aside because they get to do what they trained to do. I am inspired.

Apparently they find my case quite interesting. It all boils down to a tiny little type of cancerous cell - slight possibility it is not papillary, but if not then a new twist on what has been IDed before. They took a couple small samples of my kidney tumor today, to be analyzed by a super pathologist like House, but differfent specialty, and with people skills.In ten days or so I will have that info and a team of kidney cancer research doctors will have recommendation about where my case fits in their research and drug trials picture. Hopefully another thread in a blanket f solutions.
Bill

Getting ready to go . . . Facebook in the way

2010-06-17T17:26:00.000-07:00

I have a sponsee writing on diversion, hocus pocus change the focus. It is one method of steering others and myself away from what is too close, too vulnerable, too human. It is a way to keep away even those who I would prefer to draw in close. Sure, sometimes diversion skills are an asset for protecting and filtering who gets near. But when, as for me today, it functions to avoid or deny and hide what is going on inside myself, then it is a liability.

Facebook has grabbed my all too willing focus. Started my page a couple days ago, gave it an hour yesterday, and I don't know nor want to admit how long today. Found a couple old friends I miss and another I do not. One ex-wife. Curiosity, and I wish her well. That one was tough on us both, but great practice for the Wonder I have the past few years with Jacki. Maybe facebook is a way to communicate with acquaintances, but do I want to invest my box of energy each day in chatter on my "wall"? So far the Facebook thing is on shaky ground for me. The account is closeable but it sucks me in. And it functioned today to divert me away from slow rolling wave of turmoil about our trip to NIH in a few days.

Google Earth can show me what the facility looks like from a couple different views. I can see our nearby hotel and the coffee bar across the street. I found a horizontal view of "The Wall". And I can scope out the Metro public transit for getting around DC. The logistics of our travel are daunting - it is not my strong point. but I can do it. It is all new and I have questions unanswerable: How does getting around in DC fit with being chemo mushy each afternoon? I really want to visit our Capitol, and I REALLY want to go to the Wall. All of this will work out fine. Trying to nail it all from Arizona, serves mostly as another diversion away from the reason we are going.

I am not officially in the drug trial yet. I thought I was in already but hmmmm, I was wrong. The researchers want to biopsy my kidney tumor, just the stick a needle into my kidney method. No major invasive thing like last year cutting out some lung tissue. For a year and a half I have believed I have terminal mPRCC, papillary renal cell carcinoma metastasized into my lungs. Now, for the research of a new drug, they must directly biopsy my kidney tumor to make scientifically certain my version of kidney cancer is papillary. Remember, papillary is what makes it a bit rare and unstoppable.

This "gotta make sure biopsy' has me more than a little anxious. Scared, angry, nervous, consumed. What if they diagnosed wrong 18 months ago? What if it is papillary but I still don't get in the drug trial? What if, what if, what if, coulda woulda shouda. Where is my trust God, clean house and do the next right thing? I want to know right now! I hate being in the dark.

I can say all the right things and get all intellectual about it, but the truth is that I have been hiding on Facebook. I don't want to feel this stuff. A good addict would go get an eight-ball or two, but nooooooooo. I am a Recovering addict sitting here trying to get at the truth which I am so good at stuffing. I want the peace and serenity that comes from facing it, leaning into it and knowing that my God is as close as the breath at my cheek. Crying is still okay - can you see the drop?
Bill

I G T N M T

2010-06-10T16:58:00.000-07:00

I am not in charge of scheduling. I do not have control of my own calendar. Swim up river, or go with the flow - a daily choice. Maybe some of you have noticed, I am more than a wee bit hard headed. And, as you can see, I am willing these days to own that I am readily impatient and want what I want when I want it. Let's get on the plane to Bethesda right now!!!

For the past few years, I have done an in depth, very personal (though quite scientific I assure you) study of the word 'cordial'.
CORDIAL:
1. (1) affable, amiable, cordial, genial
(diffusing warmth and friendliness; "an affable smile"; "an amiable gathering"; "cordial relations"; "a cordial greeting"; "a genial host")
2. cordial
(politely warm and friendly; "a cordial handshake")
Most who know me recognize the first definition as a blueprint of me in a crowd. It is easy for me to circulate, smile, hug and chat before bouncing to the next party.

However, the 2nd and subtly different definition is more difficult for me. This version of cordial I utilize for the phone calls with tech support, billing people or the merchandise return counter at Best Buy. Speaking well of my growth in recovery (or at least in age), this 'cordial' replaces verbal assaults on some worker bee doing as their boss and bosses" boss told them to do. Even tougher were the collections people I fended off in bygone days. Of course back then I was not concerned with being cordial.

So, all that leads me to I G T N M T. In God's Time not My Time. Finally getting scheduled to go to Bethesda, MD, home of the National Institute of Health, National Cancer Institute chapter, has been a cordiality trial. It is a government entity after all. I sailed through with relative ease dealing with the Chief Nurses who basically handle the implementation of the drug trial. But then, at the end of the scheduling process, we learned that I was not in their system. My name nor my records. And she warned, "We can't push the admin office." Her voice of past experience I am sure. Cordial Bill, cordial.

At last, the green light was given, the date was set and, she said "I will send this to our travel agent to arrange the flight". All right! Being cordial will be effortless with a travel agent, they are all friendly and helpful right? And she was, right up to where I said Jacki is coming also and we want on the same flight. I could hear and feel the weather change. A challenge, out of the routine, not part of her plan. She really expected flying on separate jets would be fine. Now the anti-cordial clouds arose on my end. My brain raced with retorts and cuts and of course the penultimate "let me talk to your supervisor!" which comes only before slamming the phone down in a show of POWER!!!

Happily instead all stayed calm in Mudville that day. Casey did not strike out - I was cordial. Having landed on that word 'cordial' only a couple years ago, the practice since has paid off. Jacki and I are on the same flight, staying a few days past the agent's preconceived notion, flying out of Phoenix on June 21st and returning June 27th. See the Capitol, visit "The Wall", get a meeting list for my collection and maybe eat DC sushi. Oh yeah, and begin the on site process of being in the drug trial. Thank God.
Bill

Sort this out . . .

2010-05-27T19:05:00.000-07:00

Okay, so those who read this blog know that a clinical trial testing my current drug along with a second chemo drug is finally approved and ready to start bringing testees in to begin. Did I spell that right? Or is it testes? Well, it is true that we who volunteer might be nuts. Anyway, 10 days ago I learned the trial is officially open.

Next they asked for my most recent ct scan report (from late March), and next day they wanted the disc itself. Wait a few days . . . now they wanted my latest bloodwork. Wait a few days . . . I called today and the head research nurse quickly called me back. 1st she said I do not have papillary kidney cancer. i reminded her that three pathologists including theirs have agreed it is papillary. Then she found the correct patient folder and agreed. Then she said that first they want me to come to Bethesda for a Kidney biopsy.

Kidney biopsy? 15 months ago I had that awful lung biopsy to test the nodules that metastasized from my kidney tumor. They cut three chunks out of my lungs because the kidney "is a bleeder". So now the NIH wants to what, verify that what morphed to the lungs is the same as what it morphed from? I don't f'in know.

So, I asked about scheduling and learned that after the long weekend she will figure that out with the biopsy specialist. Supposedly I will know by end of the week. After talking with her (I was gracious) I did not get into an accepting patience mode. i spun for a while. 2nd guessing, what iffing and catastrophizing. In my head I know it will be alright, I can trust God, and I need not worry.

The hard part now, is getting that comfort 13 inches from my head to my heart. Peace, kindness, gratitude, patient, open minded, honoring, serene surrender. It is almost meditative just typing those words.

Our annual recovery convention is this weekend - @ 1200 addicts gathering for fun, food, speakers, workshops, dancing, comedy show and . . . no drugs. 1200 people arm in arm, saying the Serenity Prayer - the room resonates. Saturday night after the dinner, we do a clean time countdown. We start at probably 35 years clean, and a couple might stand up. Then 33, 32, 31, and so on, with higher numbers of addicts standing up as the years get fewer. We will probably have approaching 100 members this year standing for over 20 years clean. By the time we get to my 16 years, I am one of many and the clapping and yelling gets louder. Then as the years and then months go down the chanting starts, "Keep coming back". When we get to just days clean, 30, 29, 28, so on, the room is roaring with Spirit filled memories each of us has of being newly clean. The miracle of each of us multiplied by over a thousand hope to die drug addicts who no longer have to live that way.

I heard a guy share at a meeting last week about being six years clean now, but still feeling the overwhelming love/fear/excitement/joy/bewilderment of being the one addict in that whole convention hall, at that dinner, who had just ONE day clean. He cried telling us about it now, saying he never before felt as cared for and loved as he did that night six years ago. The heady atmosphere of gratitude, the pulsating Power in that room, far greater than the disease we call addiction. It shoots warmth to the depths of my soul and comes back out as shivers of awe up my spine. I know you can feel it too, right now. I go back every year wanting more. Still and addict, wanting more of living clean. What cancer?
Bill

Trial is open

2010-05-17T14:31:00.001-07:00

Wow! Finally the drug trial at the NIH in Bethesda, MD is open. Jacki and I have been waiting with bated breath for what seems six months but has been only 3. The wait has been a bit tortuous, because this trial at least gives a sense of doing SOMETHING.

I can live my life one day at a time, trust God, hope and believe and get into gratitude for the life I already enjoy. AND, the bottom line about this cancer is it is terminal without some new treatment. No matter how spiritual I can be most of the time, along with all the positive stuff is the sense of watching myself wither.

I just found out minutes ago the trial is open which I think means they can start bringing patients on board. They asked by e-mail for my most recent scan and report, and I emailed the report about 10 minutes afyter their message. Johnny on the spot, early bird gets the worm, good boy scout - I am ready. Let's get the show on the road. Do I sound excited?
Bill

Elephant in my blog living room

2010-04-29T14:08:00.000-07:00

I see 106 posts on my blog since its beginning a year or so ago. Always, a huge piece of my picture I have left out. Why? Fear. It is unspoken but with a hand full of those in my herd. I fear being judged. i fear the stigma. I fear feeling less than. My excuse is often that I do not want newcomers around my twelve step program to see a pill as a quick fix for this elephant. Get into the 12 steps first. The real reason for not telling is the maybe only self imposed stigma.

I have chronic depression. With the steps and later the outside help we call therapy, the truth unfolded. I can see cycles of depression all the way back to adolescence. My annual Social security reports about income and how much SS we can receive if we retire - well, they show a history of major ups a downs in income. From 175K to zero. One year 25K and two years later 80K.

When first i was diagnosed with depression, I had been largely unable to leave the house for near a year. It felt like slogging through mud - everyday. Not suicidal, but mental and physical lethargy. Everyday. Income was zero that year. I seldom answered the phone nor the door. I lived alone and stayed alone - isolation. Looking back It is difficult to believe how deeply the heaviness glommed onto my entire being.

I saw my GP in about 2002, described what I felt and he suggested Paxil, an antidepressant. I had known for years that something was wrong, but denial is not a river in Egypt. I did not want to have depression and I had even ridiculed those who had it. I once made fun of a guy who talked about his suffering, and a couple months later he was dead. Okay, I did not cause his death, but perhaps I threw another rock into the bag that weighed him down. I now feel empathy and sorrow thinking of him.

The Paxil made a difference immediately. I got my life back. 9 months or a year later, I figured I did need it anymore and tapered down to zero. For a few months I was okay but then . . . the mud gradually got thicker and the glom enveloped me again within just 4 or 5 months. Nothing in particular triggered the spiral. It just settled around me.

I told my doc and he referred me to a professional in appropriate therapy. We tried Paxil then most all the other medicines. Wean on, not work, wean off then try something different. For a couple years those on and off cycles continued until, finally, we found the right one for me. Did you know that the usual antidepressants work for only about 50 or 60% of patients?

The stigma is here - I know you feel it too. Why the stigma? Treating any other part of the human body for whatever ailment is what we do. That is okay and even required. But for this and only this part of the body, this organ we call brain, the stigma applies. My cancer has no stigma but my depression even I judge.

Now I have both, well actually 3 diseases: cancer, depression, and addiction. They may well exacerbate each other. Much evidence suggests that drug use is a form of self medication for depression. I do not understand the interrelationships, but I know I is one of all the above.

Now. the Tarceva daily poison we call chemo, and my depression medicine seem to interact in counter active ways. What if the Tarceva can work better with less or none of the other pills. Only one way to find out. Wish me luck . . . no, pray for me. Thanks.
Bill

Run the gamut to gratitude

2010-04-24T14:06:00.000-07:00

Everyday I run the gamut through sad and mad, scared and worried, regret, grief and sometimes moments of despair. Almost always however, those tough emotions wind up leading to gratitude. Gratitude for the wondrous life I have experienced since getting clean and into recovery over 16 years ago. Gratitude for the strong foundation of morals and values I was given growing up, lost during active addiction, but still there at getting clean. Gratitude for grace, unearned gifts, appreciated only as my recovery spurred spiritual awakenings and growth. I have learned to notice the miraculous world where within I live.

The gifts I value most are the relationships with people near and distant from my little space. Last night at a meeting I heard the speaker talk of her herd. Like elephants the herd gathers around the injured, sick, wounded, old and young. We lean on each other, knowing now that our very existence is meant to be a part of rather than apart from. The herd I am part of has gathered around so many others before and now for over a year, they just will not leave me alone. I mean that endearingly; I am never really alone because I am in the presence of the God I understand. The people of my herd come close reminding me of that unending unbroken presence. Some of the "elephants" I thought I did not know have gathered round - overwhelming comfort and love.

What beauty stands next to me in the herd. My wondrous wife Jacki. She carries this load as much or more than I yet she stands tall and walks through. Sometimes she seems to drag me along. Often she inspires me to wash through the emotional wringer that comes magnified by cancer with so many little life bumps. I believe that if the tables were turned I would stand next to her but that's not the shoe on my foot. I get to see more of the depth of her goodness, not just with me, but with all in her path. I get to see more of the little girl openly experiencing her gamut of emotions. In-to-me-you-see. I love her beyond what seemed my capacity to love.

My daughter Kate. This love, of a different bent, comes so close to the power with Jacki. Kate is in my bones and flows through my veins. She is here for me and walks through what I am so sad she must. Closer we are than when she was 5 or 6. I stole time from her in the last few years before recovery. Then we began to grow together again. But then she stole the time inadvertently turning the table. Yet, miraculously she returned from the neverland nightmare of every parent. Since then our bond has healed and now our adversity adds glue.

Family, friends, sponsor and sponsees, others near and far, including you the reader - I live within a herd.

Cancer still extracts its due everyday. Most scary, though sometimes amusing, are the altered skills of social interaction. Sometimes it hurts the other person. More readily escaping my lips are irretrievable word barbs. My sarcasm is heightened, at times shredding the flesh of interaction with others. My indirect communications are tuned into subtle controls that later leave others with the taste of insult. Oh what the hell, just say it like it is Bill - my words hurt others more often than before.
In recovery I have learned to make amends, set things right. But some days it is tough to keep up.

At times, my more awkward attempts and communicating include grasping for words that used to be readily available. I get tongue tied. I forget more than an allowance for age. Sometimes this is funny, always it is humbling, and sometimes it just plain scares me. I can be sad about missing wit.

No bicycling, no driving after noon. less energy, breathing more difficult, the nasty daily effects of taking my little white pill of poison. It does work to slow cancer's growth so it is my friend, right? I do not want to trade with those on IV chemo a couple times a week, debilitating for days. The wait for the drug trial in Bethesda with the National Institute of health - it seems tortuous and it seems like 6 months, but really has only been six weeks.

Whatever the tough parts, I think the pain is shared amongst my herd, not piled on just me or any one else. I came to recovery with the smell of an unspoken elephant in the living room. Now, I am grateful for the magnificent herd all around. Thank you!
Bill

What's gonna come out here?

2010-04-11T13:46:00.000-07:00

Would that I could write this knowing noone is going to read it. Sure, I could write in some private spot, sduch as a word doc or a journal kep in my machine. My ego not so secretly wants to be read, but sometimes it can come out of me without much interference from ego. I want to look good, but more importantly especially now, I want to feel good.

Writing here was regular for about 10 months, and has tapered down to nearly zero. I do not know why, but I do know I have felt crappy between my own ears recently. The physical symptoms have gradually worsened though still not debilitating for more than 4 or 5 hours a day. Worse has been the mental/emotional . I had a couple conversations the past 2 weeks about I was so tired of being so sensitive and how I had just been putting emotions on the shelf. But as soon as I verbalized that a couple times, the crying began to trigger more readily. The weight of having incurable cancer began to feel heavier than last couple months. All the what's gonna happen to my family, friends etc? What will Jacki have to deal with - I just hate what this is and will put her through.

Some things do not help and instead make things worse. e had a trip to Hawaii planned for next week. In my mind it was sort of a "bucket list" item of a last big trip. Rather morose perhaps, but that is how it felt. Then the opportunity to be part of the new drug trial came up and changed the picture. Maybe I don't have to die antytime soon. However the timing of the trial and timing of Hawaii conflicted. Going back and forth to Bethesda changed our financial picture. We could not afford Hawaii and Bethesda travel. The timing is off. So we cancelled Hawaii.

The airline at first was fine with cancelling, and even said a letter from the doctors in Bethesda would work and we would get our airfare back in a week or so. But then they informed us that because we had trip imsuirance we would have to go through an insurance company. The nightmare began, Insurance- nightmare - the stereotype. They want reports from last six doctors, copies of office visit notes, proof of diagnosis. I think the requirements are a list of twelve items. To me it feels like a ton of weight and I just do not have the extra mental energy already in short supply.

Then I ask my oncologist for a copy of his notes. I receive them and read something that makes all that I go through sound like a cake walk. So now I get to confront my doc over his watered down notes. The notes indicate how really involved he no longer is in my case - he doesn't even know what
's going on. Another small draing action required to get his accurat report for the insurancel.

Is my COBRA running out soon? When would Medicare kick in? We received a bill for $1200 for my recent CT scan. Chest, abdomen and pelvis, over $700 each. All in one scan, but billed as three separate events. Jacki is working hard at her job and dealing with her end of this cancer scene. My job is dealing with these seemingly minor issues. My head, and most of anybody's heads view my symptoms and tasks as minor. But it all feels near insurmountable to me. Sure, I know, one bite at a time.

So, I get up in the morning, do our coffee, bring it and the paper to jacki, read the paper and work Soduko with Jacki. Good quality time with my wife. Then she is off to work leaving about 3 hours for me to get things done before taking the little white pill of cancer slowing poison. Then I get to be non functional for 5 hours, give or take, Can't walk straight, drive, climb stairs.. I can talk, but look out for whatever words might leave my lips. That leaves about 3 hours in the evening before I am just too tired to do much at all. Recovery meetings, be a sponsor, be social and then lounge with the energy left over before twilight zone lethargy. Everyday. Everyday. Everyday.

The price the pill extracts for breaking it's scheduled demands is increased dysfunction for the next day or 2. I will not read this over beore clicking on publish. here it is unexpurgated. My hunch is it comes off as complaining. Some days are just like that.
Bill

2 deaths in 10 days

2010-03-13T12:24:00.000-08:00

Two deaths, one suicide by gun and the other by drug overdose (suicide?)have happened close around my space in life in the past 10 days. The first was the son of a sponsee. The second was a guy, about 30, father of a baby and married to a recently clean again member of our 12 step program. I sponsored him 5 or 6 yrs ago. Both of these events hit me hard, the 2nd like a brick wall falling.

He died in the morning and last night his wife was there, at the Friday night meeting, overwhelmed with incomprehensible grief, but surrounded by many of us who love her. Feeling like a protective father (grand father?), welling up inside me were anger, sadness, fear and gratitude - near simultaneously. Anger at the disease of addiction and the addict who refused to be pulled away from its grip. Sad because another one of us was killed by this disease that claims it isn't even a disease. Scared because it could happen to me or those closest to me. And lastly, gratitude that it was not me.

This morning I allowed myself to acknowledge that I am also pissed at those two guys who frivolously discarded that which is so precious to me. How could the MF's throw away what cancer is stealing away from me and so many others? How could they devastate so many people in their lives? I am angry, and I don't even want to find empathy, compassion nor forgiveness. Not yet! Maybe someday.

In present day United States of America, yearly suicides outnumber homicides.

Maybe I have not told you yet that my trip to Bethesda for in depth evaluation and study, has been pushed back into late April or early May. I want it RIGHT NOW!

Did I mention that I am angry about 2 deaths in 10 days?
Bill

How are you doing?

2010-03-06T17:33:00.000-08:00

The question and its variants are still difficult to answer. 1st of all, thank you for asking. When you ask, I must ask myself a couple questions.

1.Do you really want to know and if so, how much info do you want.
2.Do I want to tell you and if so how much? I am aware of minutiae but it seems self indulgent to go there and so I don't.

I said above, 1st of all thank you for asking. However sometimes I am so wrapped up in my stuff that I don't even notice or remember to ask about you, little or small stuff. I think about it later and regret not asking about you and yours. Sometimes it seems almost inappropriate when you ask me about my routine regimen of cancer chemo.

Today I attended the marriage of one of my dearest friends, a man I respect, admire and love. I wanted to talk about the event, the man, the woman and the joy of watching and participating. They actively love each other and being there was an experience to treasure and an experience out of my self ... And then I'd be asked the question.

A few days ago, my friend's son committed suicide. In some small way I have been helpful. I have not asked, "How are you doing." "Talk to me" seems to help. I am so sorry you are having to go through this, was helpful once or twice. I'd like to know how you have gotten through today, is a pretty good support statement. Being there for someone so close, at least in my thoughts, prayers and heart to me means actively reaching out and listening for their pain, suffering, stunned hours. Closing my eyes on the phone helps me listen better.

The suicide and the marriage - in a way side by side in my collection of moments. Both huge for them and for me taking me out of my own head . . . away from cancer. My cancer pales. And then someone asks . . . the question. Perhaps Sometimes I may be doing you a favor by forgetting to ask "How are you doing?", allowing you to, for a few more moments be something other self centered. Instead thinking about someone else' pain or joy or big moment in their life. I think then there is room for compassion.

And, I am glad you asked.
Bill

Big deals

2010-03-04T11:04:00.000-08:00

I am less sure than ever what defines a big deal. On a one to hundred scale, what in life is in the upper 25?

16 years in 12 step recovery has always told me being clean is numero uno because if I am clean then I have a chance to deal with everything else. One of my favorite t-shirts said "Don't sweat the small stuff" and the back said, "It's all small stuff." Maybe the thing about being clean is big, and the saying it's all small stuff, are helpful to put things into perspective. However, it seems to me that experiences and events that comprise a big deal are sprinkled and or dumped or result numerous times in each of our lives.

My daughter's birth was huge and subsequent growth stages have been big. My marriage to Jacki certainly dwarfs those previous. My day to day life with her is cumulatively big. My first kiss in 8th grade; starting 5 in Jr High basketball, and getting cut from the team 2 years later. All big deals to me.

My Dad's death 17 years ago was devastatingly large even though numbed by drugs. My Mom's near death bouts with lymphoma have been hugely tortuous. My sister's death for me was a deeply felt loss of an integral part of my being - she was special! Me getting clean indeed was and is a BIG deal. My cancer has so far had the most success at stealing my quality of life. Those are big to me.

Big to all of you has varying examples and events, some painful and some happy. Losing a home for your family is at least "BIG". You have just as many adjectives to communicate "big" as I do - big, large, huge, dwarfs, devastating, tortuous, peak, high point, low point - our language falls short of accuracy. Even our compassion can fall short as mine has done this very day. My friend's youngest son committed suicide yesterday. Gun to his head in his room.

That is a big deal.

I have a tendency to minimize or maximize or even dismiss your pain or happiness. "My case is worse or better than your case". I can judge and assess the worth and impact of your happiness or sadness, your joy or pain. How quickly I can dismiss or forget your hurt even as I defend or even wallow in my own right to be noticed, remembered and sympathized. My happiness is huge and you should agree even as I ignore yours. In recovery we call that self centered. At any given moment, chances are I am thinking about me and I am thinking my stuff is a bigger deal than yours.

In my better moments, I remember that I am "Bill Banana, One of the Bunch". We are all connected, what touches me touches you. At my best I notice life - yours and mine, the pain and joy, the hurt and comfort, the effort and accomplishment. Pain is pain and joy is joy and I do not to place a score by yours nor mine. Seems to me that when I notice and acknowledge and feel your life, seeing the similarities not the differences, feeling in me what life is to you, then I am acting love. Acting Love. Acting, not just saying. It is what I say I want. I need your example and help from my God to act that way and I seek more.

With love I see my friend, who lost her son today, and my big deals pale. I see you, I notice your life, and give you my love and my prayers.
Bill

Long time, no write . . .

2010-03-01T09:52:00.000-08:00

It has been just about a year since a specific dianosis was reached - metastasized papillary renal cell carcinoma, PRCC. I am not sure it is the pill form chemo drug Tarceva, or what, but the largest growth of any of my tumors is about one centimeter. I still feel nothing from the kidney tumor, but my breathing is impacted some by the nodules in my lungs. I started the medicine last March, but the centimeter of growth is measured frome the first CT scan January 2009.

The year marks a turning point for how I think about and feel about having this unusual and "incurable" form of cancer. What does my doctor really know? What does he not know? Early on, in some degree of shock, Jacki and I both took him at his word to be a a ntion wide expert in PRCC. Maybe he is. I know that he did not follow up on one drug trial I pointed him toward a year ago. In his practice, his patient times were adjusted from 20 min to 15 min. I know he did not follow up on a promised graph of tumor change over the months.

We have concluded that he may well be an "expert" in his field, but he still knows very little about inhibiting papillary cell growth. Nobody knows much about it. I want to know what they know AND what they do not know!!! I have finally defined my necessary role as Project Manager of my own treatment.

So, you helped me find a listserve of fellow PRCC patients. Through them I learned of a number of oncologists around the country who are or have worked with PRCC. Of those, much of the small amout of research on PRCC is done at the National Institute of Health. Their department of Cancer studies is deep into papillary study and trial interventions.

I must point out to our conservative party of NO! citizens that this place is an example of socialized healthcare. They are mostly government funded. No sanctified capitalistic pharmaceutical company has nor will invest much in research about PRCC nor most other unusual forms of cancer. No money in it.

I have cultivated an informed relationship with the head nurse of the department and I now have the cell number of one of the doctors. They want me to go to them in Bethesda, Maryland for a complete physical workup, perhaps to the genetic level. Then they will layout the drug trial pros and cons (additional side effects?) to Jacki and me to help us decide to be or not to be part of the trial. This stage 2drug trial uses my current drug, Tarceva, combined with another drug that kind of hits my cancer from a different angle. Sort of a double whammy approach that lets me be a bit more hopeful.

The doc I have spoken with said the combination looks very promising. In April I go to Bethesda for a few days of evaluation. They pay airfare and hotel but we pay Jacki's air. I am excited. If Jacki and I decide to do the trial it will require more trips to Bethesda.

That uplifting hopeful development the balance out with feeling angry a few times over the next few days. During a brisk long frustrated walk one night I had an overwhelming urge to throw my cell phone though a couple plate glass windows and then run like a scared rabbit. Then I realized my phone would be evidence inside the plate glass window -- uh ohh. I am typically better at stuffing anger than appropriately expressing this very human response to pain. Of course, stuffing anger squeezes out rage of coagulates inside into depression So vehemently talking about it and just thinking of throwing my phone or slashing my doctor's tires is progress for me and a bit more honest than "oh, I'm a little disappointed."

The anger was about yet another quality of life loss. We had to cancel a first time to Hawaii long planned trip. No biking, no skiing, no job, less freedom, spongy brain, cloudy thinking, memory loss. Cadillac problems all, but cancer is a thief and I am pissed off enough to fight.

Last night I became aware that in talking with others and particularly Jacki, I was focusing on some side benefits of going to Bethesda. For example I love the possibility of walking the monument filled Capitol Mall in nearby DC. I get choked up about getting to visit The Wall. Long ago I had an overwhelming experience visiting Philadelphia and the Liberty Bell and Independence Hall. I want it again, perhaps 10 fold in DC.

What I was not talking about is the underbelly of doing the trial. What if it does not work? How bad are the side effects? How much will I be away from friends and family? Even if I still die from PRCC, will I at least have helped the next guy? However, regardless of those fears, at least I will feel like I am doing something! Something please!!

Thanks for listening!
Bill

Kansas holiday

2010-01-20T11:55:00.000-08:00

The best part of traveling is traveling with Jacki. She is calm and relaxed, seldom tense. Very good with inlaws and outlaws - they tend to gather around her and I love to watch her with them. She travels well. Probably only 2 pairs of shoes. Most of all, there is that abiding sense of loving between us. Let's go!

Kansas is where my sibs and Mom live and where my nephews and nieces are within reach of getting there. Mom's sibs and some of their grown kids are there. We gather near Wichita every last weekend of the year. Seems like all of a sudden my nieces and nephews have kids who are no longer babies.

Best moments in Kansas? New Years Eve with about 40 people in the big party room and about a dozen of them were under 10. 4 generations of my family reminded me I have always had backup. We ate well, got along, had great fun and I beleive all of us welcome next year's repeat. I think I have written in the blog before about my increased perception that family is where it's at. ( yes I know ending a sentence with "at" is a gramatical no no, but we decided you can do it if you want to. ;-)

Both legs of our trip, Missouri and Kansas, were one of my favorite holiday gatherings ever, in part because I am now more aware and sensitive to the meaning of family.

And I also have family here in AZ. My favorite daughter (OK only) Kate is here. Oh God how I love that girl! Jacki's siblings and Dad are here, and all of us celebrated a couple times. Kate brought her best ever boy friend to dinner at Jacki's brother Dan's home. Even the oy friend wanted to stay past when he could have gracefully left.

Missouri, Kansas, Arizona - are you getting the idea how spoiled I am with so much family where love is a two way street. Not a drop of booze or other drugs the whole trip for any of these people. We know how to have fun on the natch.

For years I felt but little part of those bonds of family. I did not know how to allow myself to be part of and appreciate the variety of people in my family. Rather I stood outside, on the fringe and often rejected the whole picture. Unable to receive, stealing their right to give. It has taken 16 years of 12 step recovery to reach the point of cherishing the "both feet in the fray" I am so privileged to experience. From rejection to jumping in - it is me who changed. The roots were always available. Thank you!

Cancer? In the back of my mind, while feeling the joy of each step of this trip, was the recurring thought, "Is this my last?" Maybe it was, and that helped me participate and appreciate even more each little moment. However, the truth is that I probably will be there again and even likely that some one else will be missing before me. "I am not so special just because I think I know how I will die." A mentor here in Arizona laid that one on me a few months ago and it has helped keep me in perspective since. She is part of yet another family I get to be part of here in AZ. Maybe I can write about them tomorrow.
Bill

In my face

2010-01-18T23:13:00.000-08:00

It has been a month or more since last I wrote. That one was right after seeing the doctor after my last CTscan. I think I titled that blog something inoccous like "It's okay". I was lying. The radiology report said 1 (one) centimeter growth in the kidney tumor and similar growth in the largest lung nodules. One centimeter equals .4 inch. The kidney tumor was 9.7 cm a year ago, and now is 10.6ish.

Once again, the Doc was happy with the rate of growth. It appears the little white pill is working - slow growth. Then Jacki went to work and I went home. And hunkered down for two days. Looking back, I did not feel "good" like the Doc said, rather I felt somber. I really do have cancer and it is slowly growing.

Our Holidays were wonderful. First to Missouri to say a few days with Sharon and HF. So it was Jacki's sister and her husband, their grown daughter ( Jacki's niece) and her year old son (Jacki's grand nephew). As family we played games, talked, laughed and of course the babe was at center stage. Joy, peace and love was abundant.

Their home is a mile or so outside Jacki's small hometown, on a beautiful spot wth a pond. It snowed - real snow! I walked twice each day through the snow and around the pond. Each time I stopped about half way and breathed. Prayed. And breathed. The air there was so clean, fresh and brisk - almost sweet. I felt calm, almost devoid of thought and noticed the presence of God. I don't know exactly how to put it; I felt safe and loved, and I felt connected to all things created. That was perhaps the strongest spiritual experience of my life, and I was privileged to get it on each of several of those walks. No lightning bolt nor burning bush. Much more subtle yet deep and lengthy. It did not renewal so much as deepen my relationship with what is God.

Maybe I can get to the 2nd leg of our trip, Kansas, tomorrow. I think I feel better.
Bill

It's okay

2009-12-07T17:03:00.000-08:00

Left the doc's office a few hours ago. I already told a few loved ones that the new scan showed no growth. Not quite true. The increase in size is measured in an approximate number of millimeters. It works out to a curent rate of growth that will take over 5 years for any of the nodules in my lungs to double in size. The doc is going to pick 10 of the nodules and graph their changes in size from first CT scan last January through each of the 5 scans since then. I go back to see that graphing on Jan 11.

Jacki and I left his office, both I think in an absorbing mode. She went to work. I ran a couple errands and came home intending to get a few things done and go to a 6pm meeting. Instead, I have holed up in my cave feeling numb and unsocial with my phone ringer shut off. Have not talked with anyone for over 6 hours which is a near record for me. My emotions are in a slow eddy, swirling but I think going down no more.

I have tried to find others with my particular brand of cancer, "Metasticized Papillary Renal Carcinoma" for those who are technical. Wikipedia says there are about 2,500,000 new cancer diagnosis a year in the USA. Of those, 50,000 are new kidney cancer diagnosis. That is about 2% of all cancers. The doc says there are only 3000 or so new cases a year of my little specialty form of kidney cancer. I would really like to find even just one of those 3000 new patients.
Bill

My Creator

2009-12-07T07:37:00.000-08:00

My Creator,
It is Monday morning and in a few minutes Jacki and I leave for the doc's office. I ask that you please go with us; I'll hold the door for you.
Bill

CT scan blues

2009-12-05T09:10:00.000-08:00

I like listening to the blues. If I listen, that seems to take care of having to feel them so much. Sometimes I get blue before the blues deserving event even happens, like today. My CT scan was Tuesday, my doc appt to see results is Monday when Jacki can be there too. So, as before each of my preceding CT scans, I get the CT scan blues in between the scan and the doc. The fear kicks up, the sad kicks in and I get diverted from enjoying a good day.

My back felt a little painfully tense waking up this morning. My head went instantly to, "Must be the tumor, tripled in size since last scan!" If a small cough or little wheeze comes out, then my head jumps into the lungs filling up with nodules conclusion. The frequency of such magnificent magnifying thinking spikes upward every six weeks when a few days separates CT scan and the doc.

On the other hand, I notice that since initial picture last January of my kidney tumor and lung nodules, ZERO growth has occurred in either. NONE! Including the 3 months before starting the everyday chemo pill, no growth at all in my cancer. So, maybe there is just no reason for the CT scan blues other than listening might prevent. So, here are the words to the first verse:

I got the cat scan blues.
Oh yess, I got the cat scan blues.
But as long as I hear them,
All I get is good news.
(harmonica break)

Sing it! I know you can hear it too. So, in a couple days I will let you in on the details of good news Monday.
Bill

What's it mean . . .

2009-12-01T14:03:00.000-08:00

. . . to be a man?

Where did they come from, the rules defining what is a man? Maybe some men do not grow up learning the same rules, but I did and I see the results of those rules in so many men around me.

Writing this blog over the past, wow, almost a year, has often been difficult. How much can I reveal here? How can I express what is really going on instead of lounging in much more comfortable intellect? Is it now okay for me to be scared? No, not in my life nor in my own head nor within the "rules" of being a man. Only in recent years have I noticed another view of scared, "courage is being afraid and walking through it anyway". Still, expressing scared is a very awkward and uncommon act for me. As a boy and to some extent now, ridicule is the expected response. The "rule" for me seems summed up as, "A real man ain't scared of nothin'"

So what about sad? Much as my Dad received, at age 7 I received a backhand and admonishment that, "Boys don't cry!" I saw other boys ridiculed for crying when injured. "Men can stand pain!" So I didn't cry. Exceptions? Once at 16 when Grandma died. Blubbering drunk sobbing at my 1st divorce. Okay, so maybe a few tears rolled every 9 years, otherwise they were stuffed down inside as I tried to feel nothing. Drugs helped numb. I cried not one whit at my own father's funeral, instead plotting how to get in the restroom by myself to get numb.

Mad was not okay in my home growing up. The man of the house can get mad and show it in what I now know is rage. Throw, hit, belittle, cut with verbal blades. I hear today that anger is a natural human response to pain, but growing up I learned from those older than me to go from pain or fear into rage in a split second. But, only the top dog gets to do that. That's the rule, passed down from one generation to the next. Control your woman with fear and hitting. Tie thumbs together, hang over a door to hold the boy still for application of a board to the back. A few generations back, that was okay, but each ensuing generation of men in my tree was a little bit less violent. We all knew at some level it was wrong, but knew no other way to avoid showing some, according to the rules, sissy emotion. Coming down the tree to me, it was 1978, I remember it well when I used a backhand on 3 occasions, lashing out at my first wife. That is what I learned to do with mad - part of the rule book for being a man. I have never hit again, but I did use a lot of drugs as a plug on scared, sad, and anger.

Talking about any of what I am attempting to write herein, was just simply not done. No one knows what goes on behind closed doors, but the same goings on were apparently going on behind many doors. Stuff mad, sad, scared, intil the dam bursts in a fit of rage. Or the burst floods a pit of despair or depression. Our all too low self esteem is pounded into us by each other from what, age 4 or 5.

The rules:
1. Do not show fear.
2. Do not show sad.
3. Do not begin to be mad because that might lead to rage.
4. Do not speak well of yourself because that is conceit.
5. Do not speak well of another guy lest he get a "big head".
6. Discount any compliment.
7. Compare yourself to others, measuring less than or better than.
8. Judge yourself harshly but build yourself up by belittling others.

The rules seem to go on and on. I could add to the list and so could you. But I want to know, WHO WROTE THE RULES? How long have we been ruled as men by standards of perfection that can only result in failure. Every good job seems followed by a but . . .

Maybe that's just me. Maybe it's not just men.

Even with cancer, I have thoughts that I SHOULD be more spiritual, or eat better, or exercise more, or on and on and on . . . My sponsor shares with me about not talking bad to myself. Turns out I have been hard on myself for about 52 years (since age 4 or 5). I ask my sponsees, "How's that workin' for ya?" I must ask myself that same question everyday to help me steer into thinking and talking well about you and about me. I like experiencing me more concerned with being kind than with being right. I like to acting like I love instead of just saying it. I would like to ask myself, "Is what I am about to do going to divide us apart or bring us together?" I relish my progress away from being emotionally stunted toward showing what I feel. Cry when I am sad. At least say it to myself when I am in fear. I like becoming able to recognise and express anger directly but without malice. I like accepting that I progress and grow and learn and love, and arrive where I really have always been . . . hu-man. You too!
Bill

angry

2009-11-18T04:26:00.000-08:00

I have been angry. Simmering beneath the surface of my consciousness. A few days ago, maybe a week, it bubbled to the surface through a crack called resentment. I did not express my anger directly, I just had a "justified" resentment. Justified resentment I am pretty sure means I get to focus my own ire at someone else in the form of blaming. Hocus pocus, change the focus, get off me and onto someone else what is really going on inside my own head. In early recovery I read, "What about the justified resentments? We find they are best left to those more qualified to handle them."

Often I have described, when asked "how do you feel?", how my emotions run the full gamut every day. Mad, sad, glad, scared, up and down, sometimes even despair and hopeless. I cannot remember the last time I felt hopeless before Cancer. Physically vibrant, tired, sluggish, in action or sitting on my butt (laurels?)give me the variety (roller coaster?). Those answers to "how do you feel" may well be honest answers for most humans on any given day. For me, it has taken cancer to help me express and see the rest of what has always been there - emotions that seem not okay to feel. I learned as a kid that anger is not okay for anyone except my Dad. Not blaming him here, he got it from his dad, who got it from his dad, and his dad . . . a gift that keeps on giving.

I come from a line of men on one side who hit, throw, and verbally assault to deal with anger. The men I grew up with who did not throw or hit or cut with words? Well, they stuffed it. Down and in not up and out. When I stuff it, it percolates into passive agressive thinking and behavior, or it mutates into depression. The last time I hit was 1978. Wife #1. That is a pain on my soul I feel to this day. Since it was not okay to be angry as a kid, and it came out so ghoulishly as a young man, I learned to stuff it. Part of the function of my drug use and abuse for 26 years was to keep a lid on the slow simmer of emotions stuffed. Sad, scared, mad - stuffed.

So, now I have been in recovery for near 16 years. No drugs. A little better at expressing emotions instead of stuffing. I can cry fairly readily and say "I am sad." Even scared is within my verbal skills to express. But anger is still very awkward and often squeezed into a different costume.

I feel anger about this thing trying to grow inside me and grab what seems everything so dear to me. Anger at the medicine (solution?) that near incapacitates me several hours of every day. Drags me down much of the rest of my day - easily tire, I am not as sharp or quick mentally. EVERY day I wake knowing I get to take poison guaranteed to rule much of my day. It pisses me off that I also must see that same poison as "my friend"!

Of course I feel sad about the many changes in my life and my loved one's lives. The impact on Jacki is profoundly stressful and she too experiences an emotional roller coaster. The coaster mostly is not extreme up and down, it is just continuously there in the background. It wears. I know that she contains her swings to protect me and I contain my swings to protect her. Maybe neither of us needs that much protection. We must not just stuff it, because that takes too great a toll.

My sponsor said underneath this anger is fear, My first thought was that he was full of BS and that I fear very little about this whole scenario around having cancer. Now, as his laser eye spotted it, I recognize and see the fears. My kind of cancer cells are fatal and there exists no cure as of this moment in medical time. I fear what that will do to Jacki, my daughter and those close in my life. My Mom would be hit so hard by a 2nd child going before her.

I fear being laughed at for feeling and expressing such fear and anger. "There goes Bill again talking about the cancer." I am angry about not getting to work and earn and spike my income beyond what SS pays me. I resent the wobbly physical symptom I get every day when I cannot drive and stairs are difficult. What about my persona of being Bill G, the strong, kind, loving, even, solid guy who helps and sponsors and speaks inspirationally. I am still all that, AND I get to be human including angry amd afaid. I am even going to be pissed off if any comments come telling me to push it back down, get it together and suck it up!

Intellectually I understand that I am grieving: anger, denial, bargaining - what are the other two? I am going through them too. Throw in some massive amount of self centered - thinking about me and not even asking about you. Inside it feels like a big jumbled up mess, a quagmire that I mostly keep tucked in what I think is out of sight. Yet some of you see it. You ask and I give canned answers. I must let some this stuff out, vomit it out if I have to, because what I have been doing is too hard, too tough and too unrealistic of expectations on myself. And to cover the truth is distancing from you and too much work for me. So let's not tip toe through the tulips. Be a little more human and real about what this is like. Stop comparing me and mine to you and yours - it never comes out even.

God's gonna take care of all of this. Maybe after writing this, talking, praying, I can move into faith that His will is pretty good.

I'm gonna post this before I chicken out and start rationalizing it all away.
Bill

No Idea

2009-11-14T18:42:00.000-08:00

I think last post I said we are tiling two rooms in our house. I had NO IDEA of the real amount of work and displacement that entailed. Our stuff, two rooms full of stuff, was outside on our back patio for 7 days. We had help moving stuff out and then moving it back in. We had help tearing up the old carpeting (dirty, nasty stuff carpet - it is good for holding dirt and . . . ). I did shop for tile by myself (saltillo tile) but had help moving it after the delivery, stacking it in convenient places for the help who actually laid the tile. Smear sticky stuff called thin set on the bare concrete floor, set each tile, keep the lines straight and each tile set the same depth. I was the gopher/supervisor/project manager.

Another day of grouting between the tiles, another day to apply three coats of gloss sealer, let it thoroughly dry. Another day to give it one more coat of gloss. Next day finally moving stuff indoors and unpacking boxes of small stuff. The next day it rained. Whew!!! Thank you God. The tile is beautiful, and it feels extra good to me because it is the first big project I have been part of since being diagnosed.

I got tired each morning after a couple hours working, took a break, work a little more. The feed everyone lunch, work a little more and then take my friend, the little white pill. Several days the was someone here I could trust while I chilled and dozed upstairs, and a couple days I just sent everybody home at `about 1:30.

Two mornings toward the end, I awoke before 5:30am and got moving, planning the workers day to make the most of the newcomer helpers we paid. Almost all involved were in our exctended cirle of recovering addicts. Several friends and sponsees volunteered and some we paid just because we could and they needed to earn. Sorry to go on and on about tiling a couple floors, but maybe it gives you a sense of the "going on and on" of the project. I had NO IDEA!!

Today Jacki and I attended two separate services for friends recently deceased. First of all, these fellow drug addicts died clean. At each gathering were about 100other clean addicts. I probably gave/received 200 hugs today. Doctors say we need 4hugs a day to stay healthy - my cancer's gonna be cured at this hugging rate. Sort of the 12 step version of "laying on of hands" healing.

One of the dead/passed/crossed over was a cancer victim - leukemia - after three years of chemo and radiation. I know she was worn out, tired and in such regular pain that it had to be a relief to finally go. Toward the end, she insisted on detoxing from all the pain killers doctors had her taking. She wanted to be clear headed, and then she touched many in those last few days. She was the one who soon after my diagnosis called me out of the blue and shared dealing with cancer experience. She related to my fear, sadness, anger, and even the gratitude for life lived so sweetly. She is the one who gave me the gift of knowing chemo is my friend. Thank you Andrea!

The other service was for my friend Bill. I love him still. His last initial was G, just like me. So in our recovery community there were two Bill G's. He and I called each other OBG - Other Bill G. When the initial news spread of his death, many thought it was me. He was a large, kind, gentle and loving man who was always amazed that so many cared for him. He leaves a legacy of love amongst us, and I miss him.

The thing about this death stuff is that I have no sense of mine being any nearer now than 10 months ago. Still no felt symptoms of the cancer, only of the chemo pill. I think mostly of life and living with so many who love me - far more than I realized BC. Today, I experienced two memorial services. Both were clean recovering addicts seeking spiritual growth. Their paths of seeking were from differing directions of belief and faith, but I say they were headed toward the same ending - a closer contact with God at the source of all the love we experience on this planet. Some call it heaven. That's where Bill and Andrea are now, and it is where I will go and you will go and we'll all have a meeting. See you there. Count on it!
OBG

During

2009-11-03T12:11:00.000-08:00

I do not think I have blogged during my afternoon twilight zone funky period. Everyday I take the chemo pill and a few minutes later the effects start coming on. At this moment I am 40 minutes in so this is prime "peak" time.

Phone call, so now it is about 55 minutes in. The call ended 10 min ago but I forgot. My fingers don't want to type - they are slower than usual. My eyes feel like when you pull back on the skin around them wondering what you would look like with plastic surgery.. I wobbled when I got out of my chair a bit ago. It is not a good time to go upstairs and for sure I must not drive. My hand keeps going to my forehead to press firmly and push backward. It feels a little good to press and push back, but more it is more like necessary. In a few minutes I will need to get horizontal for awhile. I may or may not sleep, but horizontal is required.

That will take me about 2 or 2 1/2 hrs into it and then it is a gradual process of these minor symptoms decreasing over the next two hours so by about 5 p,m I will be able to drive, converse well and be ready to be active. Today I am transplanting some flowers and cacti.

Meanwhile our home is a wreck with stuff moved and stacked to clear our office for laying tile after the carpet damage. The tile was delivered today and I have help coming in the morning to put sealer on the tiles before laying tile on Saturday.

Last night I was at a men's recovery meeting. Several new guys shared "from the heart" about the huge mess they are in, which is fine, they need to get it out. We can all identify with making a mess of our lives. Many meetings go like that - new guys, then some more experienced guys maybe talking about problems but then solutions other than getting loaded or saying f**k this and running like we always did. Instead another new guy shared and went on and on. About ten minutes of pointless spewing about nothing specific. I kept waiting for someone to politely ask him to stop, "Your time is up."

We talk about sharing the message not the mess. I personally felt taken hostage. Other guys chance to share dwindled. So, finally, I spoke resectfully as I could asking him to, "stop, your time is up" I am known to do that, and I always wonder why me? Do other members really want to let someone go on and on about their mess? We ask at beginning of every meeting to "Please limit your sharing to 3 to 5 minutes." Do we not mean that? Are we still afraid to speak up for ourselves?

One of the very impressive aspects of a meeting for me has always been a subjective feeling seemingly "in the air". As I have studied our literature over the years, I have noticed a phraes in our books mentioned I think 12 times: "Atmosphere of Recovery." That is a treasure to me in my recovery. It is the respect of one addict sharing and all others in the room listening. It is the "sharing the time" of sharing so that most if not all in the room have a chance to talk and be listened to. Addicts just do not do that. Most often we are busy thinking about ourselves and listening to the chatter in our own heads.

That is a big why for having our meetings - most of an hour out of own heads and maybe hearing the message of how to stay clean and find a new way to live.

There, it is almost two hours since taking the pill, and I functioned well enough to write the above. Thanks for stepping out of your own head long enough to read. You ever step out of your own head and watch yourself think? It can be quite entertaining. Smile!
Bill

Kickin' my butt

2009-10-27T19:43:00.000-07:00

This stuff is kickin' my behind the past few days. It is 7:45 in the evening and I still have cloud brain and wobble legs. Odd except I was an hour and a half late taking the little white pill today. Still, the afternoon twilight zone has stretched into 3 1/2 to 4 hours on Sun, Mon, and today.

Toilet shopping. Ever go toilet shopping? With the water heater bust last week and the consequent ruined carpet, we have decided to replace the carpet with tile to match the rest of downstairs. Long as we are at home improvements, we are replacing both our slow flushing, high water use toilets. So, I swear, I was in a Home Depot today talking with two sales people about how many golf balls or full rolls of toilet paper each toilet brand will flush. I'm not giving you a load of crap, it's true.

One brand will flush ten (10) golf balls in one flush. Supposedly that's just a drop in the bucket. Maybe they were just giving me the run around and besides, none of those toilets come in brown, just white. Wipe off that smile now, what do you think this is, a stream of random thoughts swirling down through the porcelain bowl of life? But now today's running around has wiped me out so I'm gonna stop. I am buying a package of golf balls though - just for research.

Shane that BS was just for you.

Getting the work done. The hardest part will be moving our stuff out of our office to make way for tile laying. Jacki's desk is huge, and we both have tons of paper and little treasures in their spots. Getting that part done reminds me of a book called Undaunted Courage. The book is about the Lewis & Clark expedition (great book BTW) and moving our stuff seems expeditionary. Okay, okay, one item at a time, one treasure tucked into one box at a time. The actual DIY work is being offered by skilled friends in our recovery network. They are the real treasures, and I hope they never move.
Bill

Short one today?

2009-10-21T16:16:00.000-07:00

We'll see. I have not been writing as regularly as before - each month seems to taper off from the previous. Yesterday was my 6 week since the last scan checkup. He wants to press on my lower belly, and it just tickles so much I don't think he gets a very good feel. He gave me technical terms for some of my minor symptoms-they are all minor but cumulatively they suck. I don't remember the terms but it was somehow comforting to know they have occurred enough in others to warrant a name.

Anyway, the checkup was positive as were the blood test results they called me with today. Let me tell ya, Sarah the nurse there put that needle in my arm so smoothly that I had to ask if it was in,

I could go on here about what seems a myriad of little side effects, but that feels like whining. I will tell you that limitations the side effects put on my life are depressing. My routine, established the hard way after fighting it, is good mornings, twilight zone wobbly afternoons after the pill, and then a good evening and tuckered out about 10pm. If I try to vary much from that routine, I pay a price for a couple days, so . . .

This morning after Jacki left I could hear water running slowly through pipes. Slower than a running toilet, faster than a trickle. I tracked it down. Water at a fast drip seeping from the bottom of our water heater. I have seen this before and I know what must be done. So, my next thought was "How do I fit this around my mandatory routine?" Much of the rest of the morning I spent sopping up water, sucking it out of the carpet, and finding a duplicate heater to fit the explicit size requirements of the space where it must fit. It will be available in the morning, and I have a skilled guy who will install it for $50. Total cost then is a bit over $310. Cold showers.

Money. I learned yesterday the group rates from my ex employer, which I still get through COBRA, nearly double as of the 1st of November. $948 a month for a man between 56 and 59. One of the very early actions Obama took in office was to subsidize COBRA payments for people who lost their jobs. Instead of $948, I am responsible for $331 per month. Of course, as of Nov 1st a new deductible cycle begins for a few thousand. The entity I distrust the most is the insurance company. What possible right do they have to almost double rates?

I was a headhunter in the health insurance industry for 3 years. I worked on many sales person positions that included compensation from $100,000 to near $1,000,000 per year. Sales people! During those 3 years the CEO of one of the 3 largest Insurance companies received a bonus of over $1,000,000,000. Count those zeroes. Billion. There are software companies that specialize in ER, ICU, maternity, admissions, on and on, all with a different software, none of which will talk to the other software. All of those specialized software companies have sales people and Executives, all making six figures or more. I talked with hundreds of those people and would occasionally ask them about patients. None of them see patients and rarely hear anything about what impact their product has on what this is all supposedly all about. I did hear a great deal of talk, like, 100% of those people, about money. When looking at almost any position with direct patient contact and many many supporting roles, I always heard about patients.

Did I mention the hundreds of positions in the insurance industry whose only reason for existing is to decrease the amount of money doctors, nurses and health care professionals receive and even positions focused solely on making every effort to reduce the insurance benefits paid for health care we do receive. Even more extreme: every insurance company has positions dedicated to going back over claims paid to try to find where too much was paid and get it back from the patient. I'm not making any of this up, nor exaggerating - insurance companies are about pure unadulterated greed. After 3 years, I became aware that the industry is just plain slimy greed. Maybe it started as a way to get more people covered, but it became infected much like big banks. Billion dollar bonus - where oh where does that money come from? What do cancer victims with no coverage do?

I changed to the oil industry where at least there is little doubt what they are about. However, instead I found people like geologists who loved rocks when little and now get to learn about them for a living.

In about a year my COBRA coverage will run out. 6 months later Medicare will kick in. I I am really scared about what that 6 months will do to our ability to get medical care and the financial hit that may well happen.

Wow! I could go on and on, but the bottom line is I am embarrassed about how our great nation allows insurance entities to determine who gets what care. We can do better. Our nation's moral fiber demands that we must.
Bill

Real men

2009-10-12T19:47:00.000-07:00

400 guys in one room laughing, hugging, greeting , meeting, welcoming and sharing. Honest, kind, gentle as well as boisterous, raucous and bawdy. Men from different creed, religions, ages, races, sexual identities, states and countries. The unusual part, at least in my experience was very little judging, intolerance or gossip. No macho strut or one upmanship The focus was on similarities and recovery from the disease of addiction via a spiritual path. The food was pretty good too.

Traveled to San Diego for the event in an RV with 5 other guys who I already knew but know better now. Got along the whole trip.

The men I know in recovery came from all sorts of family or lack thereof, experiences. Many of us grew up with some degree of domestic violence, sexual abuse, incest or rape. I often hear men who first used drugs with parents as early as 7 or 8 years old. Many grew up with criminal role models. Amongst us are some who grew up to perpetrate those experiences on others, and many who have done time in jail and/or prison.

The common experience among all of us is that for whatever reason,or no reason, we became drug addicts. Some via alcohol or marijuana or speed or heroin or ecstasy or acid or tulenol, seconal, or anything at all. I sponsored a younger guy who liked to steal several packets of Coriciden, take all the pills at once and come to in the emergency room.

Such men are my comrades in recovery, and such men comprised the 400 at the Men's Spiritual Retreat of my weekend. I saw miracles because my eyes were open and I noticed. Men with from 43 years to just a few days clean. In recovery we grow up and out of low self esteem, self sabotage, rage and disrespect for the gift life. Our relationships are mended and we learn how to build new and healthy relationships with our friends, brothers and sisters, children, parents and we become good husbands. Cops can follow us and we don't have to worry about outstanding warrants. We become useful, productive and valuable members of society. And, we just don't use drugs anymore, at all.

Cancer? Yes I.ve got it. A nasty form I hear from the docs. And I believe in miracles - I see them all around. God is alive and active, loving and caring, and He has always had my back. God can't do what?
Bill

Something to say?

2009-10-09T11:18:00.001-07:00

Maybe. At home a couple days ago, on the internet I found a drug trial going on for just my kind of cancer, Papillary Renal metastasized carcinoma. The drug being tested is the kind (a Met inhibitor) that might work in conjunction with my Tarceva. It is being done by GSK at several locations around the country, and the web site said they are recruiting new patients, even if they are already using another drug, like me. So I used my headhunter skills and dug around enough to get the doctor leading the study on the phone. I now have her direct line. But study is now closed - no more new patients. I think it must be hugely difficult to have to tell sick people that kind of news.

Clunk!! I was taken aback by how hopeful I got in just that hour or so following that trail. I felt angry, sad, scared, shed a few tears . . . and breathed. I was cordial and grateful to that doctor. She did tell me that with some current growth of my cancer, I would have a shot at a "compassionate usage" exception from the drug company. My cancer is not growing right now so for sure I am not eligible to even be considered. The doc said I need to give the Tarceva the full run as long as it works. Still, the "clunk" was up side of my head.

The minor but multiple side effects of Tarceva seem to be becoming more than minor. The hours of feeling good each day seem to be decreasing. The acne-like stuff on my face and chest is worse than before. Let's think of it as dead cancer cells oozing out. Instead of too tired by 9 or 10pm, it is sliding toward 8. My left nostril has dried blood each morning, and begins to bleed again if I blow too hard or dig out the clot. TMI?

Once again I have been sliding toward isolation, no meeting since last Friday for example. Couple days did not even leave the house. I tend to forget my plan for today because I did not write it down. I think to write it down but forget before getting to a pen.

This all adds up to a persistent wearing on me physically, emotionally. More positive is that Jacki and I are praying together each morning. Jacki has suggested taking a couple days break from the little white pill and that probably is a good idea. The thought triggers the fear that such a break would give the cancer a jump start. Ask my doc.

Writing all this is turning the tide in my internal battle to go for a bike ride. I had nearly talked myself out of it but I'm going now! Thanks for writing.
Bill

write for me

2009-09-30T20:44:00.000-07:00

It has been so long that perhaps I have no readers left. Gets me back to "write for me". I still have cancer. It seems surreal that I still feel no symptoms of the disease. Plenty symptoms of the daily chemo pill. So much of my body hair has broken off, not fallen out, rather broken off leaving stubble like a 4 day growth of beard. Cuddling with Jacki requires cloth to skin because of the stubble. I really miss the skin to skin.

I had a terrible haircut 3 months ago - I'm talking worse than a blind monkey with a dull knife haircut. My hair grows so slowly now that only last week had it grown enough to be repaired. My fingernails have become slow growing too - no problem there, but they have also become thin, splitting, soft and brittle. Peeling almost. I can't pop a pop top without a utensil. Weird! I have to use strengthening fiber nail liquid.

I am having trouble figuring out how to make that stuff not shine. You know, like fingernail polish. I am thinking of just doing them black. Maybe I will try that for Halloween. Add some black lipstick, eyeliner, black leather and I can go Goth for trick or treating. I like the mini Snickers, just in case I knock on your door.

One of my medical people says hair, nails and other fast growing types of cells slow way down with chemo. Brain cells normally grow rapidly and their slow growth now might mean I am losing them quicker than I get new brain cells. Might explain chemo brain, huh? The good news is that cancer cells tend to grow fast too, and apparently, so far, they are slowed way down. Purt near stopped. Purt near?

If the whuppin' in "Whuppin' Cancer" can be a word, then so can the purt in "purt near stopped." If you didn't grow up in Kansas, then you might not know things like that. Just fillin' you in.
Bill

No new growth

2009-09-09T09:06:00.001-07:00

Yesterday Jacki and I met with my Doc to go over the results of last week's CT scan. It gave us two sets of information:
1. From initial scan in January to first scan with this doctor in April, there was definite measurable growth.
2. Since beginning the Tarceva chemo pill there has been no measurable growth. This is what the Tarceva is supposed to do. No other drug is known to stop the growth. Even Tarceva sometimes only slows the growth, so I am quite happy with results of this CT scan

The Tarceva does extract a price. I am tired several hours each day. I have to get horizontal a couple hours most days. Decreased equilibrium occurs for a couple hours most days to the point that driving is not safe and I am very cautious with the stairs at home. Even when I feel good mornings and evenings, something in the picture takes away from my energy and mental acuity - i am slower.

My life is so different now than before diagnosis. I was aware of no symptoms before. The emotional price on me and those close in my life has been the greatest difficulty so far. Knowing I have a rare and near untreatable cancer kicks us in the teeth. The physical and mental price of the chemo is a great loss and requires more grieving than I could ever want. This sucks!

I am aware that today's blog has so far expressed no hope nor optimistic expressions of positive affirmation. This is how I feel at this moment and I need to get it out and on the table. I cry as I write. I have not prayed much today and I have not sought solace in meditation and communing with God. I am pissed off, resentful, sad and fearful. Again, at this moment.

Writing this has already helped. I can see joy and happiness, comfort and peace ahead. I do believe a cure will occur during the extended time the Tarceva works. Other drugs are being tested as we speak. I can feel hope and believe that God is here with me. Thank you for believing with me.
Bill

Dis ease and fear

2009-08-31T16:22:00.000-07:00

Let me put it mildly: I feel dis ease about the CT scan this Wednesday. To put it strongly: I am scared sh**less. On Tuesday next I go over the results with my oncologist,
MICHAEL S. GORDON, M.D.

My hope is lung nodule shrinkage and/or kidney tumor shrinkage. What the heck, I hope it's all gone!

My fear is just the opposite, growth and increase. Most likely is no change at all from 3 months ago, which would be good news. The best my chemo drug, Tarceva, has done on my type of cancer cells is to slow or maybe stop the growth. With your help all along, my plan has been to set a record for the effectiveness of this drug.

I do feel great HOPE and with no exceptions, feeling hope is okay to feel. Fear? Now fear does not seem as okay to feel or talk about. Personally I get stuck on, "What really, do I have to fear?" I can only answer that question intellectually and those vague answers have no effect at all on my truth that I feel afraid. I can readily cry over that fear. Mix it with sadness and I can cut loose with a real choking up time.

Others, yes, some of you, have told me I must just have faith and believe in a miraculous cure for my cancer. What, you think fear is a lack of faith? Well, my own head tells me that sometimes, so I really do not need anymore of invalidating my unpleasant emotion. Fear is not a lack of faith. FEAR is an acronym with three explanations:

1. FEAR, f*** everything and run
2. FEAR, false evidence appearing real
3. FEAR, Face Everything and Recover

The opposite of fear is not faith, but rather courage, the courage to feel fear and walk through it anyway. By myself I am not particularly courageous. I get some of it from you, thank you very much. Even more, I get it when I ask, from my God. Courage is a spiritual principle in whatever religion or philosophy I know about. It is given by grace. For me receiving courage is most likely when I ask it to be given. I feel the fear, and I have an endless source of courage. So do you!
Bill

"Don't need no Stinking medical care"

2009-08-30T16:33:00.000-07:00

My father died at age 61 of a major heart attack. Just dropped dead, suddenly. After a long period of medical intervention for clogged arteries and such, he decided to go no more. No more doctors.

In the back of my head, for years, lurked that subliminal sense of inevitably becoming like my Dad. I had a sense that I too would die at around 61 of heart problems as did he and so many of my relatives. My Dad ate poorly, smoked 2+ packs a day, and exercised minimally. He was set up to have a heart attack, and then he refused to pursue the remedies available. A good family friend, at the same age and same health problem, had the procedures done, and lives to this day.

In my early 50's I stuck my head in the sand and would not seek preventive cardio evaluation. At a good friend's insistent urging I went to a specialist and had all the testing. Result was the doc telling me to "come back in a few years." I had taken no action because I did not want to hear possible bad news - I acted like my Dad did and shied from doctors.

Now, with cancer: I found out by accident and am still pursuing every medical action and suggestion. But I'll tell ya, I am really tired of seeing doctors. I am certain I have been to the doctor more this year than in my previous 56 years. I have had an ingrown toe nail for 3 months - home remedies have not kept it in abeyance. After sufficient suffering I finally saw the doc about my toe. "Don't want no more stinking doctor visits".

Two days from now I get my second CT scan in the 4 months of daily taking the little white chemo pill. Part of me does not want to go because I fear bad news going over the results with my doc a few days later. Like my Dad, I do not want to go. I do not want doctors messing with me. But I am going to do it anyway. More than wanting to skip the fear and discomfort, I want to live.

Out of fear, low self esteem, discomfort and did I mention fear, my Dad only ran the 99 yard dash for life. He died somehow not knowing or feeling the love from the hundreds who felt and expressed their loss when he left. I owe the difference between my Dad and I to my blood family, all you others who love me and to the life saving 12 step program of recovery so central to my life. My fear is far surpassed by the love and faith you and I exchange. I will suit up and show up with the doctors. My Dad never made it to where you have helped me travel. Let's keep going. Thank you!
Bill

Headed to the woods

2009-08-23T07:46:00.000-07:00

We are going away for a few days to a cabin in the woods near Christopher Creek, AZ at about 5900 feet elevation. 50s at night, low 80s daytime. I appreciate these little getaways with Jacki more than I can say. See you soon!
Bill

pledge no more soap boxes

2009-08-20T12:58:00.000-07:00

Okay so yesterday I got carried away with a somewhat controversial blog. I do stand by my two fundamental questions - I wrote my Senators asking these questions re health care reform: Will we all have the same plan you do? If not, why not?

I am writing my 4th step. A deeper version than those previous, this one approaches my inventory looking at my shortcomings and how they effect my life and those around me. For example when I act on impatience it puts down another person and pushes them away from me. Or, with impatience I can act impulsively and make poor decisions that detract from my well being and those close to me.

Cancer magnifies my tendency to act on my shortcomings. A good friend who really wants to know might ask me "how you feeling?" I can say great or fine when really I am feeling tired and down in the chops. I have then lied to someone I care about - again, distancing them from me. Sometimes the truthful answer might be"I don't know." Because I am often in some fear, anxiety or grieving, some little inconsequential thing might trigger a knee jerk reaction. Totally inappropriate and hurtful, I regret my reaction immediately. Let's call that shortcoming "snappish".

I am overly concerned with looking good. Not so much my physical appearance - well no, that is not true. I am very concerned with what you think about how I look. I am getting "moobs" (man boobs) and I pick clothing that hides them. I am older, I have cancer, I exercise less due to the tiredness side effect. You might think me weak or less a man. And I judge myself that way. For that matter, I judge you and most everyone that way. There is my judgmental shortcoming. Once again it pushes you away and pushes me down.

One shortcoming leaking out sideways tends to open the gates for a quick little rush of these critters I am calling shortcomings. All of these characteristics I try to hide and not let you know what is already obvious - I do act short, dishonest, judgmental, etc, etc.

In recovery, I have learned most if not all of these imperfections come from a place of fear. That I am less than, not enough. Fear that I will lose what I think I have or not get what I think I need. Conversely the solutions to those problems are variations of love: patience, acceptance, tolerance, kindness and compassion, etc, etc. Love is the opposite of fear and at any given moment I am either in fear or in love.

My tendency to write and focus so much on my imperfections is a shortcoming my sponsor pegged as "Talking bad to myself". I have been hard on myself for . . . well, as long as I can remember. It does not work very well. In order to focus on my negatives, I must practice arrogance - that I know better than God who created me perfectly and shows me how to align my will with his.

The God of my understanding will give me courage, patience, honesty, willingness and kindness to solve the tendency I have to act on my shortcomings. All I have to do is ask, and practice what he gives me in all my affairs. I have faith that is true.
Bill

Covered?

2009-08-18T17:38:00.000-07:00

My Mother is in the hospital for yesterday's knee surgery and will go into a rehab center for follow up, safety and comfort. No way she could go home now with only her older husband. All of this healthcare is paid for by his retirement insurance and Medicare. Throw in some supplemental coverage for medication and miscellaneous, and she has the money end of health care covered. From my own experience, I know the lack of financial worries takes a big load off the healing process.

However, for me there is a cloud over health care finances down the road. IF I can keep my COBRA coverage until it must end a year from now, then there still is a six month gap in financial coverage before I am allowed to receive Medicare. We all pay for Medicare, a bit out of our pay each check over the years. However, if one becomes disabled and no longer able to work, then we cannot receive medicare coverage until two years after being officially declared disabled. COBRA for 18 months and our government overseen Medicare begins 6 months later. Who made up that rule?

Uh oh, I sure hope no health care expenses come up then from my terminal (so says the doctor) cancer or from my lower priority leukocytic lymphoma. The pills I take which might slow or less likely stop my cancer cost $100 per day or $3000 per month. My BC/BS thanks to our government overseen COBRA, is paying for all of my medical needs now until January when I must meet the $2000 deductible again.

Projecting down the road, I can expect financially crippling expenses for the 1st 6 months of 2011 before Medicare kicks in. I do not mean to whine, and I would much rather find a job, work and earn insurance coverage. I could work for 2 or 3 hours per day if it does not have to be the same 2 or 3, and not every day and if it does not require focused attention. Chemo brain does not help with that last part.

Not working is one of the toughest parts of this whole cancer ordeal. This is not how a real man lives. Where is the bacon??? But I do have lots of support and encouragement from friends, family and best of all my wife and daughter. My sponsees and some minor recovery commitments give me some sense of being useful.

Back to money. What the f*** do people whose COBRA expired do? What do people in the UNITED STATES OF AMERICA do when their resources become depleted due to the medical expense of keeping one of their children alive and able to function. How would they cover $3000 or even much more per month in medicine? Oh what the heck, sell the home, the car, the furniture. After all, healthcare is not an entitlement.

We have fire departments paid for by all of us. We have police departments paid for by all of us. We have water and sewer infrastructure paid for by all of us. Our roads are paid for by all of us. Hmmmmm, schools, stop lights . . .

According to Webster's, socialism is "collective or governmental ownership and administration of the means of production and distribution of goods." Not fire protection, police, roads, sewers nor fresh water at our faucets, schools nor stoplights are "means of production and distribution of goods." Neither is healthcare. I personally am embarassed by the lacking availability of good medical attention for 40,000,000 Americans.

To our law makers quibbling in Congress: Will we all receive the same healthcare benefits as you do? If not, why not?

I am very fortunate, and I am very aware of those equally deserving but without my resources. Thanks for listening.
Bill

Wait and see, yeah but . . .

2009-08-16T01:09:00.000-07:00

Wait and see. Much of this cancer journey so far has been Wait and see. A lot of waiting and not much seeing. It seems like forever since I had any measurement of how the little white pill is working - 3 months which has crawled along. I have a very full life, time flies, but the cancer part seems to crawl. The "yeah but" part? I frequently have a small cough - feels like a very small piece of food is stuck on the edge of my wind pipe. I am pretty sure it is caused by accasional serious indigestion and burping up acid, kind of burning my throat. But in the backgound is the question, "Is this the cough of the cancer growing?"

Have I gone to a doctor to get it checked out? No. Why not? 1. Fear of bad news.
2. Tired of seeing doctors. 3. "It will pass". I have an ingrown toenail which since its beginning 3 months ago gets better then worse again. Have not been to a doc for that either. Okay, I will go. For both. Soon.

It is cooler here especially at night and early morning than it has been for about 6 weeks. I could ride my bike again - no more "It's too hot" excuse. It is now 1:25am Sunday morning. I do hereby commit to get up and ride by 9am. I'll tell you about it.
Bill

Wow!!!

2009-08-11T08:54:00.000-07:00

Wow, it is amazing how much a human being such as me can enjoy a weekend getaway. Jacki and I rode with two dear friends for 9 hours to another friend's property/home at 9600 feet elevation outside Telluride. Each year the nearby recovery community holds a "campvention' there - about 120 recovering drug addicts with from 35 yrs to one day clean. God's handiwork is so readily apparent in that setting - tall aspens so thick it is tough to see through. Deer, turkey, a bear and a grouse - all seen on the dirt road to the event. Consider the miracle of those 120 who, if life was fair, would be dead. Instead we were loving to each other and appreciating the setting. "On Higher Ground", a wonderfully appropriate name for the annual event.

The last day, Sunday, at 8am all 4 of us participated in a guided meditation walk to a stunning panoramic outlook - so much holding on tight with our fellows and tears shed when it ended. Seldom have I felt the presence of what I call God more deeply than those moments. A peak experience!

It is personally reassuring knowing and feeling a great sense of that same Creator also watching over me and guiding my journey through cancer. The doctors have said it is a slowly terminal version of cancer cell. To me, in my many good moments, I know it provides the hurdle that God, partly in the form of your love and prayers, is guiding me over.

I have recently watched several movies that I had already viewed more than once: Dances With Wolves; Pay it Forward; Gladiator; Saving Private Ryan and Platoon. My tears flowed much more than any previous viewing. It is the human relationships that touch me so deeply. The closeness, joy, separation and loss and new beginnings. At the end of Saving Private Ryan, years after the war, he asks at the grave of one of those who saved him, "Have I been a good Man?" My war was active addiction. I have survived it as of today for 5695 days. And most of that time I have been a very good man and I plan to make good use of my days to come. Thank you my Creator, and my fellow children for this journey. Let's enjoy it to the fullest!
Bill

Pen sheds light

2009-08-04T20:11:00.000-07:00

Amazing how much just writing stuff down helps change the way I feel. 2 pretty good days since the last rather melancholy post. Sometimes I can just ignore feeling . . . ummmmmm . . . . what can I call it that conveys it to you? I don't know, but sometimes I can ignore it for a day or so and just go about a day anyway. Do it anyway.

So, more out and about, more little tasks accomplished, a little exercise, answer the phone more and make more calls. Out of my shell. Drawing a blank, so see you soon!
Bill

Explain to myself

2009-08-02T11:48:00.000-07:00

Hello kind readers. I am unable to explain to myself my lack of blogging for nearly a month. It has been a way for me to keep you informed and a way to get out what I feel about going through the cancer experience. My hunch is that most of you are not surprised at my difficulty doing the latter. Being able to recognize and express my emotions has been a quest of mine for near 30 years. I started from scratch and kicked into a higher gear when I stopped using drugs and began recovery. Recovery, a process of becoming the kind of man my dog (if I had a dog) thinks I am. Keeping it simple, I learned to look for 5 basic emotions: mad, sad, glad, scared and excited. 5 basic emotions of mine, no different than yours or King Tut's 4000 years ago.

Mad, sad and scared are the most difficult for me and are indeed what I feel most often about having cancer. I just do not get to live as I lived before. No work, no income, anger at being near debilitated 2 to 5 hours each day by the "medicine". For several reasons I have to take it around 1pm each day and then have to plan my activity around those few hours. The harassing multiple minor physical and mental symptoms are often overwhelming. Some days I just get so down about it all that activity just does not happen. Slogging through mud sums up those days and parts of other days. I feel scared mad and sad that this may be how my life will go for the duration. And then I feel guilty that I am not reaching out enough, eating right, exercising enough . . . praying enough.

I do not want you to know that is how my mind works, that I get so sad and mad and scared - or even sabotage myself. The "shoulds" and "ought tos" attack me. I can do intellectual accepting about this disease and discomfort. I can be compassionate about how this effects those close to me. I can feel profound gratitude for the great years I already have had and those still to come. I am relieved my symptoms are not as bad as that of many other people. But 'neath everything else is the mad sad and scared.

Anyway, I also feel love, giving and receiving, which is not even mentioned in those 5 basics.

My relationships with others have suffered in the past month as I have retreated some and isolated some. I am coming out of it slowly.

I am aware of some anxiety about how the little white pill is working. The 1st catscan to measure its effect was two months ago and I go a 3rd month before next catscan. My mind goes to the worst that could be happening, and then relaxes back into trust and faith. I KNOW deep down inside that all this will work out right, but still, lurking, is the fear and sadness and anger. I live with me.
Bill

I said I would

2009-07-10T23:00:00.000-07:00

I said I would write today, and it is a near done day so here I am. Of the to dos I set out for myself, I did not much of today, however, I need not talk bad to myself about it. My yardstick has never been very accurate anyway. So I can tell you that I house husbanded on the laundry, kitchen and making the bed. I made it to a meeting. I felt crappy much of the day, but I still was productive. Some days that just has to be enough.
Bill

Allow Me to Introduce My Selves

2009-07-09T17:48:00.000-07:00

All these blogs since February and now I almost feel like I am coming out of the closet. There are three characters who do not like me and all three live between my ears. Don't get all excited now, these characters aren't Sybil spinoffs. Rather, they are a way of looking at what goes on in my head, conscious and unconscious, thinking and providing play by play narrative. Please allow me to introduce my selves.

Cancer Man: You all know I have cancer. Cancer Man does not believe I will survive this disease. He believes he knows what from and when I will die. He looks constantly for symptoms or pains or anything to prove it is probably getting worse.

Depression Man: Depression Man says I don't feel like doing anything today, let's just watch TV and sleep and isolate with the ringer off.

Addict Man: Addict Man says "Listen to the other two, they are right and you're not worth the trouble anyway. He says I am not enough, never have been enough and never will be, so go ahead and make things worse, it doesn't matter anyway. Go get something to eat. Obsess on computer games. Sabotage any good thing going on in my life.

None of these characters really wants me to die because then their game would be up. And so, they compare notes. They connive, sneak, baffle and snicker. When desperate, they all pile on at the same time, kicking when I am down. They want me miserable, giving in to cancer, depression and addiction. I do have all 3 maladies, and so those three characters do live with me - they are part of me.

So, what can I do? I can talk back to them. I can say, "Shut the f**k up and sit back down, and I mean that in a loving way." They are part of me and I love me, so I like to think of them as newcomers at a 12 step meeting. They can be disruptive, but I do not have to let the chair the meeting. I love newcomers, they can be members, but they will not be allowed to take my recovery away from me! I do not have to succumb to addiction, depression nor cancer.

Any recover program, for whatever malady, requires action. Go to meetings, write, exercise, eat well, open up in my relationships with wife, daughter, friends and family. Take my physician prescribed medicine. Get some sunlight every day. Pray, meditate and ask for help.

The truth is, and maybe this is the real point of this posting, is that I have not been doing my action program to the best of my ability. It's kind of like someone quitting smoking and sneaking cigarettes. I have a plan, I do well at it for a few days, my intentions remain good, but the actual doing part goes downhill. then I close off from you because I don't want you to know that I am off plan. I stop telling the truth, asking for help, cut back on prayer isolate more and obsess on food, TV and/or video games. Completing the downward spiral, then I get to feel like a lousy participant in healing.

I will write again tomorrow and tell you what action I have taken since this post. And to the group in my head, "Let's let God chair the meeting!"
Bill

Up to speed

2009-07-08T16:15:00.000-07:00

A couple people have asked for the whole story from start to present. So I will attempt a short synopsis of the journey so far.

Last Christmas time a routine annual physical chest x-ray revealed nodule looking things in my lungs. The subsequent catscan was a little lower than needed, so it accidentally picked up on a bulbous thing on my right kidney. The radiologist evaluation of what he saw suggested it could be kidney cancer tumor metastasized into my lungs. In that instant my life changed.

I discovered I could go to the Mayo Clinic right here in Scottsdale. I was poked & prodded, with several specialists looking into my body in ways I don't care to repeat. What was originally described as a long needle going into one of the lung nodules to biopsy a sample evolved into a full blown operation to cut two 1 1/2 inch triangles from my right lung. Fingers and instruments between my ribs through three holes. I hear I moaned for two days. My sponsees visited and got to point and say, " there's Bill on drugs." Real cards are they all. ;-) It still hurts when I sneeze or cough.

When all was said and done, Mayo diagnosed a urothelial carcinoma metastasized into my lungs. When pressed, the Oncologist said it is terminal and said maybe 2 years. In that instant my life changed . . . some more.

However, the guy suggested getting a second opinion. The 2nd guy said just cut out the kidney, but since his diagnosis was so different from Mayo, he encouraged a 3rd opinion and referred me to a kinda famous renal cancer specialist. He sent my biopsy tissue to a super duper pathology guy who IDed the culprit as a Metastasized Papillary Renal Carcinoma. Not curable, but might be able to slow it down with a drug newly tested on this unusual kind of cancer. That was the end of March - three months of being in the dark since Christmas. Jacki was struck just as bad as me. I'm telling you, it is tough on our loved ones.

Tarceva, the drug, is a little white pill that I take every day between 1pm to 2pm. No diarrhea, no throwing up, no hair falling out. My hair is breaking off in places (chest, arms, legs, hands and fingers)so I feel like a five day growth of whiskers. Decreases my cuddle ability. Spongy brain much of each day, tiredness 1 or 2 hours before and after the pill and 2 to 4 hours of poor balance follow the pill every day. Oh, let's not forget the acne like rash on my face. I guess it is poison, but it also "is my friend".

The one catscan since starting Tarceva shows no growth - the Doc says that is good. Wasn't what I wanted to hear nor what I was afraid to hear. Next scan is in a couple weeks.

That's my best effort at telling the facts. Maybe tomorrow I can get more into the way it feels. For now, I'm tired.
Bill

Write after the 4th

2009-07-05T18:58:00.000-07:00

What a delight was the 4th. Good friends, good food, a place to get horizontal when I needed. Lots of smiles, story telling and laughter. The kind of day we hope to have regularly. A pink cloud day - full of gratitude. Jacki is such a delight to hang around with and enjoy, wherever we are. Thank you Jacki!

We had breakfast today with Kate and then a movie. Do you have any idea what a gift it is to see my wife and my daughter having fun being women together? They get along and talk so well with each other - I have had the opposite experience with a previous wife . . . or two.

The movie was the new Johnny Depp movie, Public Enemy. As usual, a stupendous job by Mr Depp. He plays John Dillinger the bank robber from 70 years ago. Definitely had us rooting for the bad guy while also wanting him caught. Turns out even the good guys had a very bad apple.

A good friend learned today that his mother died a couple days ago. Too many newspapers outside her door, so the neighbors called him. Very sad, and I know he will lean on those of us around him instead of getting stuffed and stoic. When God squeezes your heart, it comes out your eyes . . . and your nose. Real men can cry - it is a natural human letting go. Even big strong dams release water.
Bill

Write before the 4th

2009-07-03T10:41:00.000-07:00

Replying to a friends email encouraging me to write after too long not doing so, I found myself writing about how it's going. So I will cheat and paste that in as a beginning: "I have been in a funk of sorts. Brain seems cloudy. I say that and some people call it chemo brain. No excuse, but it is how it feels to me. I am so tired of taking that stuff. It comes on like some drug of the past then makes me feel like crap – longer now than a month ago. Maybe a few hours instead of 1 or two. WEell, here I am writing, so maybe I will cut and paste it in to get me started, thank you."

There, a start.

The 4th of July is tomorrow. I remember accidentally finding the Liberty Bell while strolling in a park near downtown Philadelphia probably in 1978. I thought it was a replica and went closer, seeing it was the real thing. I turned 180 degrees and behold! There was Independence Hall where the Bell used to ring from its spire. Did you know PENSYLVANIA as spelled on the bell, is missing the 2nd n?

Anyway, I suddenly felt a shiver up my spine and tears in my eyes - a sensation I can only label as visceral Patriotism. A friend recently told me of her trip to Washington DC where she got the same overwhelming feeling of awe. The Capitol Mall must trigger that same visceral Patriotism. I would like to go there and walk the Mall.

That feeling of Patriotism is just that, something I feel more than just think. What have I ever done to protect that feeling which I would guess so many of us feel? I drew a very big lottery number in the draft for Viet Nam. I did not welcome the men coming back, never even occurred to me at the time. I did ask inane questions of my uncle when he returned. He has never really spoken with me since, and bridging that gap is beyond me and perhaps not even appropriate. I did call him a few years ago long distance and say, "Welcome back." But that was met with a distant reaction that I interpreted as no interest in "reupping" our relationship which once was close.

Today we all know to welcome and applaud the solders coming home. They are often older and people we know in our adult lives, not just the kids we sent to Viet Nam. They exemplify the action behind Patriotism, even when I disagree with why they are sent to wherever armpit location our leaders think best. I can welcome them when they come home and shudder when they are sent back again and again. Weekend warriors my ass!

What action can I take to back up my feeling of Patriotism? Is it the knee jerking verbal tirades and accusations of being "UNPATRIOTIC!"? I don't think so. Is it judging others' level of loyalty to our nation? Nooooo. How about speaking my mind in a strong yet cordial way when I see people in the USA treated without equality? Maybe. How about when I give to those who need something I can give, and give with out strings (maybe even anonymously)? Yes, I like that one.

Recently I encountered a person near my circle of acquaintance. He basically screamed at me about some very conservative (much further right than any of my family)beliefs at odds with my left/moderate lean to the left. He expressed hatred and ill will, even a desire for all the recent efforts to repair our nations ills to fail. Not just fail, but fail miserably, squashing even further our poor, our hungry, our sick, and our suffering, children and elderly included. I am not sure what he wanted, but I hope he is not an example of our system of bipartisan checks and balances. I hope he is not an example of what he claimed is being a Patriot. Hate and vitriol, hoping for failure. I did not see those qualities etched in the Liberty Bell alongside the misspelled Pincilvanea.

Cheers to all of us who appreciate the diversity in our country and all that diversity can continue to accomplish. I am hopeful.
Bill

"My friend" is Unpredictable

2009-06-18T18:53:00.000-07:00

The little white pill is unpredictable. I thought I had a routine: take pill @ 1 or 2 pm, feel "hinky" for a couple hours and then have a pleasant late afternoon and evening. The program seems to be changing. Saturday, to try and entertain after 1pm, I took "my friend" at 11am; 2 or 3 hours earlier than my routine. I swear, I was messed up for two days. I mean like hunkered down in a cave. Tuesday and Wed I rode my bike knowing that would help, but both days were still odd. Today I rode, took the pill at 1:15pm, pushed through to ride home, showered and putzed on the computer and then about 5 the hinky feeling started. Poor balance, shaky legs and hands, jello feeling in my head. What do you call that? Hinky.

I don't like it. But, there is no dirt on my belly, I am vertical most of the time, and I am sucking air. We all know the little white pill is working and the discomfort is worth it.

Meanwhile, I spoke with one of the more impactful people in my recovery, a woman I admire. She was waylaid by a surprise heart problem and I ask that you steer your prayers her way. It's not just me, she has helped many many addicts to recover and we need her!
Bill

Push through?

2009-06-13T10:45:00.000-07:00

Today I'm gonna find out if I can push through my late morning dip in alertness/energy without getting horizontal for a little while, and through the post little white pill 2 - 4 hour "hinky" period. I have people coming over for BBQ and later a speaker meeting in West Valley. The prep stuff this morning has me running low and so I'm taking a break. When Jacki and I have people over I tend to run around doing whatever it takes to make it exceptionally good for all. Maybe it's possible to let our guests help, like another person can probably do the actual cooking just fine.

A BBQ just does not seem like the big deal my head thinks it is. I am wound up at this moment over something that really is just a gathering of friends. People who just want time, not a magnificent array of gastronomical delights. I snapped at Jacki this morning. I know it was due to me being wound up. I fretted over this last evening, fearing that the little white pill would prevent me from doing it right. Will I be tired and not be a good speaker this evening because I tried to do too much? I am more limited than I used to be but I really don't know how much. But really now, what does it matter. God's in charge and it's all okay.

I learned early in recovery that I have an MMM - Magnificent Magnifying Mind. It is good at blowing things out of proportion; making molehills into mountains; causing me to sweat the small stuff; giving me the delusion that I have to handle something huge. By myself.

Take cancer for example. Sometimes my mind can make just as big a deal out of a BBQ as it does cancer. Truth is, even my cancer pales in relation to all the rest of my previous life and in relation to all the living I still get to do. But fear pops up. Something as tiny as not doing a BBQ correctly can trigger my fear button - fear that I will look less than and others will see I am not perfect. That fear then sets me up to act on shortcomings like getting snappy with Jacki.

The cancer triggers fear that I will lose this sweet life I enjoy. The fear alone takes away from that life. The fear assumes that all the good stuff is over. And then I think I have to stand up to it, again by myself, and be the perfect seeking to survive cancer patient. People will think less of me if I do not survive.

My head can get on such merry go rounds and wind them up tight enough to go beyond my usual amusing speed of spin. To do so I have to step into fear, assume I am alone, know that I am not enough to push on through and not connect with my God and all of you standing beside me holding each other up. And of course I have to magnify and sweat the small sh*t. Instead, just for today maybe I will just enjoy the afternoon and evening, trusting God will get it done even without much help from me. Whew, what a load off my back. Jacki will be home shortly and I get to set it right with her for the bit of harm from my snap.
Bill

Survivors

2009-06-10T22:29:00.000-07:00

I have recently begun getting to know a cancer survivor who is inspiring. Notice I did not say I am inspired. Rather I would like to be inspired by what he has done and how he does it. He had two or three cancer bouts that included serious chemo and radiation. For awhile he had to wear a Sh*t bag (I don't know it's proper name). He rode his bicycle wearing that thing. Now he exercises hours a day, fasts over a day each week, and practices regular formal meditation. That's his story and I find myself disbelieving. How can anyone be that disciplined? How could I be that disciplined?

His cancer was terminal - instead of dying, he did things like have lunch during 3 or 4 hours of IV chemo. He says exercise, diet and meditation is the key. I want to be inspired.

First definition in Webster's for inspire is: transitive verb; to influence, move, or guide by divine or supernatural inspiration. Too big a part of me just does not buy into me being so inspired as to behave in such a positively obsessive way as my new friend does. And yet, for 15 years I have been practicing a spiritual path and I have seen many miracles. Divine inspiration is waiting for me to reach for and participate in my own miracle. My friend's
actions have maximized his body's natural immune system and its ability to heal. What about me?

It is not news to me that self sabotage is my biggest shortcoming. Hmmmmmmmmmmm. Shortcomings; the things in me my sponsor has asked me to write about. Maybe that is what I am doing here. TOMORROW I WILL RIDE MY BICYCLE. God, please help me . . . some more.
Bill

My Thick Head

2009-06-07T21:35:00.000-07:00

Getting it through my thick head that this is a looooooooonngg process has changed the picture as I see it. Maybe cancer does not have to reign supreme at renting space in my head. Maybe I can live without wondering if every little pain or ache or cough or whatever is the cancer on a rampage. Maybe it can sit in the back seat and not get to drive so often. A certain sense of freedom is unfolding. What could I be free to do? Ideas?
Thank you for participating.
Bill

The Long Haul

2009-06-04T23:09:00.000-07:00

We met with the Doc today to go over results from last week's catscan. Nothing is bigger and nothing is smaller. No shrinkage and no growth. The doc says this is good news. For me, it is not the news I hoped for, but also not the news I feared.

Doc scheduled me to come back in six weeks, not the every other week as before. He wants another catscan in 12 weeks, not the eight weeks as prior. Apparently any changes in my cancer will be very slow, be they growth or shrinkage. Please, remember that with this type of cancer, metastasized papillary renal carcinoma, stopping the growth is very good news. This type grows slowly but is hard to treat. I am in for a long haul. Jacki is in for a long haul. All of you in my corner are in for a long haul.

So how do I live my life? What do I do with my days and months and years? I have a few role models, people who can no longer work but have rich and useful lives. We do recovery, and a bit more service. And, maybe we volunteer in other ways. Several of you have suggested I write a book - I go immediately to the best seller or not worth writing. Maybe not a good reason to totally reject the possibility. However, there are two causes peripheral to addiction, that touch my heart.

Many years ago I volunteered at a crisis nursery 4 hours per week. I did that for four months. I remember assembly line diaper changing. Playing lullabies on my harmonica hoping a room of 15 babies will sleep for awhile at night. And I remember the horrors of abuse that some of the infants came with to the nursery. Cigarette burns on tiny feet sticks in my head. I know that I felt useful and I had a pretty good touch with the babies.

Secondly, I feel drawn to somehow volunteer in a domestic violence prevention role. It is an issue personal to me in my own life. I grew up with a family tree rife with hitting and throwing and yelling at women and at children. My dad was not as bad as his dad, who was not as bad as his dad, on back to some beginning generation of family violence that no one can pinpoint. Three different times I slapped my first wife. 1978. I remember it like yesterday. I felt so small and ashamed. I vowed never to hit again, and I never have. However, what happened to that anger? What is a man to do with emotions he learned are not okay to feel? Hitting, throwing and yelling is what I learned to do with those feelings, and now, with that vow, hitting is no longer an option. What to do now?

I was not aware in 1978 of that dilemma. Looking back I can see a lot of stuffed emotions and more and more drug use to help keep them stuffed. Don't interpret that to mean I became an addict because of how I was treated as a boy. Rather, I was trapped with that dilemma - what to do instead of rage? None of the men in my family showed any answer to that question, and I remember not one single time of anyone anywhere in those days even have a discussion about such a subject. It has taken years of a tough and costly road, before and since getting clean, to begin to solve that dilemma in an effective and healthy way. I see many of my fellows in recovery, who suffer from that same kind of bottled up with no outlet emotions. I think I have helped some of them and maybe I can do more outside the rooms of recovery. I am interested.

Thank God for very slow growing bad stuff that also has some silver lining. Knowing a possible way that I will one day die, does not make me at all special. It is likely cancer will not cause my demise anyway. What really makes me special is that I am like you. Thanks.
Bill

Look in the mirror

2009-05-31T23:08:00.000-07:00

Looking at pictures of myself, from the convention, from recent family gatherings, I see a guy with a pale face and a red nose. I think I look worse than I feel, and my vanity kicks in. Pictures of me have looked odd to me for a couple of years. My face is rounder, my teeth are more crooked, my belly is bigger. My self image, my physical self, is low right now, as I write. Intellectually I know it is from the pill, from cancer, from getting older, from the hard life I have lived. "If I had known I would live this long I would have taken better care of me."

And then there is the mirror. Not the one I examine myself and practice making faces in, but the mirror that you are. You who see me and hear me and tell me what you see. "You look good!" is a frequent comment. But more revealing is like Linda's comment from my last post. "I love you", "I like being with you", the smiles reflected back at me, your phone calls, texts and emails. Maybe most of all, the hugs, tell me a different story than when I see pictures of the pale face with the red nose. I know I am not alone seeing the worst in me but having the best reflected back at me. You are that mirror. Thank you!

I had the catscan last Tuesday, but I won't go over the results with the doc until Thursday the 4th. Sure seems a long wait. The doc is out Monday and Thu is the next day Jacki can schedule to go with me. Too many what ifs and yes buts and how abouts run in my head when I let the faucet of my thoughts start running down that trough.

Jacki has a friend whose husband has the same exact kind of cancer - papillary renal carcinoma. Mine is metastasized (into my lungs) but his is not. I use the present tense about him, but the thing is, he died a couple days ago. After 5 1/2 years of life post diagnosis. That is longer than any of the doctors have suggested to me, and so it is in a way good news for my case. But it sure brings it home to me about where I stand. Easy it is to turn to a slippery slope of despair and forget about cures and miracles and maybe responding well to the poisonous little white pill I take every day.

Friday and today I got to play chef for to different segments of my family. Best steaks I ever grilled were the ribeyes on Friday, and the burgers today were pretty good. My sister Gina is still here, until Tuesday. Movie and hanging all afternoon with Kate and Jacki and Gina Sat afternoon. Today the contagious laughter of little kids and shared stories and smiles with the adults. A couple sponsees did step work with me, and a few guys were over last Thu. Calls from some of them every day. This is my life. It is rich in relationships with people I get to say to and hear from, "I love you!" Mine is to feel incredibly profound gratitude for the fullness of life I am privileged to experience right here and right now. Thank you.
Bill

Okay, I'll write!

2009-05-28T21:26:00.000-07:00

It is difficult for me to describe the small subjective effects of the little white daily chemo pill. Most days I take it between 1 and 2 pm. 15 to 30 minutes later it hits. My head gains a jello sensation - no, harder like a memory foam mattress. I get a little wobbly and do not feel safe driving. Most days about an hour into it, I have to get horizontal and some days actually fall asleep for 30 to 45 minutes. Rarely longer, and more frequently I just linger in a semi sleep mode.

Numb or flat are the best words I have found to describe an encompassing mental and physical sensation. I will have moments, maybe minutes of spark but not fire, just a wisp of smoke. I forget what I am doing many times a day. Recently the effects are stretching into more of each day and I feel them in the mornings a little, even before today's dose. If this stuff works, I will be happy with several times the impact on my head and my body. My immune system is down: slow healing, a persistent cough from a cold I had 2 weeks ago. I have an ingrown toenail for the first time in my life. The hairs on my fingers, hands, and parts of my arms and legs feel like I got too close to a fire.

Good grief, this goes on and on, such is my life today. Except for the good parts. They still make up most of my moments. My daughter graduating was big. My sister is in town for eight days. She went on a twelve step call with a sponsee and me yesterday. Maybe the guy will stay off heroin, but Gina and I shared the spirit of giving together in a way that gave her a sense of what my life in recovery is about. We feel closer. I have not shared this kind of time with her . . . ever! And it's a treasure.

But the small things give small bursts of steady joy that make daily life an engrossing experience. I have ridden the new light rail from Tempe into central Phoenix a couple times. Feels like a real city living within earth friendly parameters. The people riding mostly seem friendly and happy; ready to engage in banter and discussion. Lots of smiles.

Ever eat a seedless grape, the red skin snapping into the soft sweet heart of a small little delight? Whoever designed this man altered morsel also designed the man/woman who figured out how to make it seedless. That designer also is on my side whuppin' the cancer. I feel pretty good about that!
Bill

Feeling Good

2009-05-17T14:09:00.000-07:00

Physically I do not feel well today. I have a cold for the first time since I stopped smoking over 3 years ago. The cold is moving into my chest with the resulting cough and hack. My stomach muscles are sore. Is my immune system down because of the little white chemo pill? Probably. Too bad this cell killing medicine isn't selective enough to just wipe out cancer cells and leave white blood cells alone.

2 more weeks and I get another catscan to look at how much the lung nodules have shrunk. Getting the cold I think indicates it is working. For now, I'll take it.
Bill

Not much

2009-05-13T16:33:00.000-07:00

Not much to say today. Mostly today I have hibernated. Probably over did it yesterday - not much stamina these days. Each day I feel some level of dread about taking my friend, the Little White Pill. It seems to have now settled in to a predictable effect on my body and mind. For two to four hours after taking it I get to feel hinky or squiggly or twitchy - I have not found quite the accurate word. Then throw in tired and sluggish thinking. Still have some minor acne-like rash on my face. That's about the sum of my side effects.

The thing is, I would gladly suffer more if that's what it takes to whup this cancer. I am grateful what side effects I get from this chemo are relatively minor, but it's just gotta work. If more discomfort increased the odds I would gladly go there. Some of this stage in the process is very similar to the waiting a couple months ago for the diagnosis to be pinned down. I want to know how well my friend, this Little White Pill, is working. Tick tock. Probably reason number 47 why hibernating is not good for me right now.

Date night this evening with Jacki, and Kate is joining us for dinner. I have talked with a few guys in recovery today by phone. So there is my relationships leg of dealing. I will walk at least to the mail box - there is at least a little of the physical activity leg. I guess I did do some recovery stuff today - read JFT, sponsorship, pray, so there's a bit of the recovery leg. Okay, I won't talk bad to myself saying I was lazy today - I did more than I thought. cya tomorrow.
Bill

MBA Girl & Moms

2009-05-10T18:43:00.000-07:00

Wow! What a weekend! Yesterday I was privileged to watch my only child, a young adult I admire, graduate with her MBA degree. All the pomp and circumstance, cap and gown, the whole 9 yards. Good thing I had strong buttons on my shirt 'cause they wanted to pop off. And then, she just had to have sushi to celebrate and she has found a nice little mom & pop place with excellent elegantly displayed sushi, sashimi, and even some cooked stuff for less refined taste buds. ;-) What a good time we had! Thanks Kate!

Today of course is Mother's Day. Some of the mothers I know, because of wreckage of the past from active addiction, are not in their children's lives. How sad those stories are, yet I have seen such depth of emotion, bonds and longings that run deep to the core of all those women now that they are clean and recovering. I have been privileged to watch some of those torn apart bonds reconnect and heal through the recovery process. Some of the women I know however, no matter the quality and depth of their recovery, no matter their desire to set things right, never experience the opportunity to again know their children.

I say all that because I am so grateful for being so close with my daughter, and knowing my Mother, feeling her love, all my life. And I appreciate all those women unable to reconnect with their children who give in so many other ways. Their children would be proud of them.

Cancer? Even that fades into the shadow of the importance and power of mothers and daughters and sisters and wives. Often I miss the boat of understanding them, but they are awesome, so I keep paddling, hard, to catch up.
Bill

What to Say?

2009-05-08T17:09:00.000-07:00

Most of this blog has been oriented to get what's inside me out into the light. Whatever gets stuffed down and in still comes out - sideways, often in the form of bizarre behavior. Sideways used to work for me, but at the expense of others and to my relationships. Stuffing it is not useful to my health and in this case fighting cancer. Rather, stuffing feelings down and in feeds cancer and every self destructive thing in my life. God help me get it out.

It's probably a culmination of fear, sad, grief, depression, shock, but this little white chemo pill has put the biggest lock on feeling much of anything. My body is tense from head to toe. I need a sleep aid. I feel numb, dull, shadowed, and closed.

This poisonous medicine has built up in my system to where it must be to be effective at shrinking my tumors. The effect on my brain however is very frustrating. Each day has from 2 to 5 hours of near debilitating cloudy thinking, increased forgetfulness, and decreased coordination. My balance is shaky and sometimes I should not drive. The side effects were predicted to be acne-like rash (minimal now), diarrhea (none yet) and fatigue (some of every day). Maybe the increasing levels of brain centered difficulty is a just for me side effect. How special is that?

The longer I have been clean, the more light weight I have become with many OTC and/or prescribed drugs. 1/8th of a sleep aid. One Dayquil capsule instead of two. Finding an effective medicine to treat my depression was a very long process of trial and error through about eight different drugs. Each tiny increase or decrease had a definitive noticeable impact on me. I suppose therefore that the little white pill (chemo is my friend) should be no different. Its effects on me include some not even noticed by other patients or acknowledged by doctors. Certainly not mentioned to me before starting. Even in cancer I have become very sensitive to drugs.

None of my subjective and nebulous symptoms are that big a deal. As far as chemo goes, my oral stuff is a breeze compared to IV treatments that overwhelm patients. I am grateful for that. The ego trashing I gave myself over not working is finally swept away - there is no way at all I could do any job with any structure or regularity. Even social security was easy for me to qualify. No check until August, but at least I know something will be coming in.

Jacki told me to write. It has helped a little. Wrote this one with no tears; a first. I'm not sure that's a good thing, but it's where I am today. Thanks for hanging in there with me. Now, there's a tear.
Bill

Cloudy

2009-05-02T13:49:00.000-07:00

It has been very difficult to write recently. My brain seems cloudy. I am out of touch with what is going on inside me - how I feel. My body is tense, jaw is clenched, neck is knotted, legs remain "at the ready" and my brow furrows. Meditation is virtually non existent and prayer feels disconnected. Depression hangs on me more than anytime since this process started in early January. What is up?

Monday is one month of taking the little white pill (chemo is my friend). The pill basically is poison hopefully directed mostly at the nodules in my lungs and the baseball on my kidney. I know it also effects my skin (the rash/acne), my brain and my energy. Slogging through mud describes part of each day.

I write that stuff and my head goes immediately to self pity and moping and self centeredness. "they" will think I am whining. The truth is that I go there each day, multiple times, but not all the time. I also spend some time in gratitude, empathy and compassion for others. The two ends of my emotional spectrum revolve moment to moment.

Topic at the meeting last night was self honesty. Someone shared about being afraid of looking bad and I can sure relate. But then I had another thought. If I risk looking bad with many of you then I do not look bad, I look like you. We are similar. This cancer crap would be tough for any of you as well as me. I am not alone and I am not different. It is my business how I feel and it is my responsibility to try and get it out in the open - talk and write and pray. I can lean into it by leaning toward positive, gratitude and spiritual connection. I can tell the truth. Except when this dam* drug has me so balled up that I cannot recognize what I fell or even think. That's where you guys come in - the mirrors to help me see. I love you too!
Bill

Is it in the water?

2009-04-26T17:50:00.001-07:00

In the past I have often thought that seldom has something bad happened to me or the people around my life. I know I was minimizing some events - heart attacks, severe back pain, extreme migraines, my own active addiction. Those are all pretty bad for people to go through, but not numerous in my space. I am blessed that around me no murders, car accidents, hurricanes, tornadoes, fires, nobody died in Viet Nam, Iraq nor Afghanistan. No one close to me has gone through any of those extreme life events. I have been fortunate.

Now, recently, past couple years, it seems cancer, hep c, death and heartbreak are so near in the lives around me. The cancer stuff - mine I would not trade with others I know. Pete; Danny; Ham; my sister; Jeff's 1st sponsor. We are so human and life is such a fragile gift that changes and goes away. I have no sense that I am leaving anytime soon - years away. But my perspective sure has changed. My gratitude for those who have and those who still do touch my life is greater than any time past.

Jacki, Kate, my Mom and siblings. My sponsees and sponsors and so many around the rooms who have gifted me. These are my treasures - far surpassing the sum of all the money I tried so hard to make. I am alright, I will be alright, and I have always been alright. It is my life and it is a jewel. So are you.
Bill

Itchy humor

2009-04-21T16:38:00.000-07:00

After brushing my teeth this morning I looked up and saw this guy with his left arm up and over to the right side just above the ear. Just like an orangutan, scratching. My arms are long, but it was the dorky look that made me laugh. So maybe next time you see me, just reach up & over and scratch. Give us both a smile.

The stuff on my face is not acne - looked pretty much like it. Now however, my nose is better but it is so tender at my hairline that the slightest bump or even shower spray makes it bleed. Now I'm scabby. Tried wearing a hat to cover it up but that made it worse. A really good friend suggested a paper bag but thought that might buy into my too vain need to look good. Remember, I am getting some needed humility out of all this. Cancer ain't all bad. Okay, that wasn't funny.

My sponsor has me writing an angry letter at cancer - get to call it nasty names and press really hard on the pen. I am f'in mad about having cancer - it really ticks me off! He does not want me to end the letter getting all spiritual, just put the anger on paper. No problema. I can do that, but you readers don't get to see it. Well okay, maybe for a price, money is getting short.

A few months ago, before cancer (henceforth BC) I left work and had an obsessive urge to buy. Anything. Something. I did not do it that time but it was a moment of clarity. I have always fixed on retail solutions to how I feel. Looking for something external to change how I feel is so easy to do but too often has consequences I don't want. I have not had a cigarette since March 3, 2006 at 5pm. But recently I have had stronger urges to smoke than any other time since. I don't even bother to ask "Why?" And I do not believe when someone else claims to not know why they do such things. Self sabotage. Sometimes I am not my friend.

That's part of why I write this stuff; writing can help get the sabotage out of my not quite subconscious. Thanks for reading and praying and laughing with me.
Bill