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.