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
Monday, December 5, 2011
Wednesday, October 12, 2011
Did they really give me anything?
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?
Thursday, September 29, 2011
First in Man
"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
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
Thursday, September 15, 2011
Strikes to my Heart
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.
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.
Sunday, August 28, 2011
How do I pray ?
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
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
Friday, July 22, 2011
Between trepid and intrepid
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
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
Saturday, July 16, 2011
Technology for her birthday
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
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
Saturday, July 9, 2011
Strategy
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
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
Saturday, June 25, 2011
Bicycle
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
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
Sunday, June 19, 2011
They should do a study
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
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
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
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
Friday, June 3, 2011
Taking a break
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
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
Sunday, May 22, 2011
The Long Way Out
"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
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
Saturday, April 30, 2011
Move quickly
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
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
Thursday, April 28, 2011
The unknown "one more thing"
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!"
Tuesday, April 26, 2011
One more thing
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
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
Wednesday, March 30, 2011
Still an Avatar
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
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
Friday, March 25, 2011
Avatar
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
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
Saturday, March 19, 2011
On the spot
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
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
Friday, March 18, 2011
... and fits in my life?
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
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
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
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
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
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
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