Monday, February 28, 2011

Skype Over My Head

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

Wednesday, February 9, 2011

Hungry, Angry, Tired

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

Friday, January 21, 2011

Back from Bethesda

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

Sunday, December 26, 2010

Long Slow Drawn Out?

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

Wednesday, December 15, 2010

Try to Write

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

Saturday, November 27, 2010

Results?

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

Saturday, November 20, 2010

Rock and spin or roll and flow

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