Bald

A few times over the past 3 years I have whined at not getting to see myself bald. Yesterday in the shower it all fell out. So I changed my blog photo. ;-)

Not stable anymore

23 days ago I went in for what I thought would be a new cycle & infusion on the T-Gen trial.. No, no, no infusion. A tumor in the right side of right lung had grown too much and was pushing through into the rib; Even more significant, the cancer has spread into my brain and one tumor threatened the sight in my right eye. No more Mr Nice Guy growing slow and held mostly in check with experimental treatment.

I have been unable to write nor even read; partly due to my brain problem and partly due to lessened ability to focus. 4th grade spell champion seems gone. Through the entire 3 year journey I have puzzled over what things exactly I fear about progressing terminal cancer. Now I can specify 3 things:
1. losing my sight;
2. losing my thinking
3. dying which instinct puts me in a primal fight or flight desire to live at all costs.

Today I am left with the possibility of a miracle. This could come in the form of medical advancement. There is one more drug combo the appears worth trying, based on the complete gene sequencing that TGen did on my normal lung tissue and tumor lung tissue last September, cutting edge medicine! I finished 10 days of radiation targeted at 7 parts of my body; brain tumor shrinkage seems to have worked, so now I can start a new med, and a 2nd chemo a two weeks later.

I have been on a time release form of pain medicine. Makes me tired and slow - combined with radiation, I have been very tired with sketchy thinking. Another short acting pain medicine is okayed to use as needed for in between, when necessecary. I had hiccups for 10 days straight - nbd except it woke Jacki and me each night.

The hardest parts include the impact on Jacki and Kate, which I can only scratch at understanding. I am also aware of waking in the night and 1st thing each morning, "can I/ do I want to keep going - do I have it in me, and do I see its important to keep going. "Does God want me yet?" The vomiting, pain, constipation etc color my thinking, but so far my answer is an emphatic "Yes!" I am not done.

cycle 6

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

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

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

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

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

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

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

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

Just type the first word

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

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

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

Sorry, that's all I have for now.

John Wayne Clouds

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

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

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

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

Did they really give me anything?

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

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

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

First in Man

"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