LOG DATE 3/29/2013 9:49 PM

The jaw and the mid-Atlantic ridge.

I’m in the last week of SUTENT and it has not been very nice; not devastating, just debilitating.  That is why I have not been writing.

But some of it was interesting.  Remember the mid-Atlantic ridge? And the jaw bone? Well, my gum got thin enough for a bone spur of the jaw bone to poke right on thru, as if Atlantis were rising again.  Fortunately, the Dentist knew just what to do and just filed down the tiny sharp points so that they could sleep peacefully again beneath the waves of gum.  He said he had no doubt that it was not a cancerous growth.  But overall, the week has been a week of barely functioning.

Friday the 5^th of April will be the CT scan.

Wednesday the 10^th will be Judgement Day.  That’s when we will hear whether this toxin has been working for me or not.

Friday the 19^th will be my last day of work.  Yes, we’re going to have a goodbye retirement party.  Once I retire, then I can really get to work.  At least, that is my hope and plan.

LOG DATE: Wednesday, March 20, 2013, introducing Bootsie

SUTENT first, because the focus is still pRCC, but I can be very brief: 

• energy, skin, GI all affected and we have two weeks to go.

Now for a story, still, however, within the health compass. 

Long ago, when Janet and I lived in Federal Way, a kitten came to our door.   It was winter.   It was cold.  I couldn’t resist the obvious plea.  Those who don’t believe in animal communication probably don’t speak human too good either.  When the little critter was fed and warmed he purred delightfully and I was hooked.   I’ve treated him so carefully that there are almost no feral traits left, except for his exceptional wariness, something we share: sometime we both start at the same sound and say “What was that?”.

I had no idea that years later, when I felt fatigue and worry, that the crazy little tiger would jump  up on my chest for a little tete-a-tete, and that I would find such attention restful, even peaceful.  Every time Bootsie jumps up for a cuddle, I take it as a sign to try to relax and not worry.

 

LOG DATE SUNDAY MORNING 3/17/2013 10:47:55 AM

LOG DATE SUNDAY MORNING 3/17/2013 10:47:55 AM

I do get some advice on how to proceed with this blog: avoid areas that elicit the TMI reaction, speak more personally, slide from medical into philosophical, etc. I also get views from places I know not.  I do have a niece in Indonesia, but I only get hits from Malaysia.  I don’t believe know anyone in S. Korea or Germany, though there was mention of a lost relative during the cold war.   Naturally, the countries that make the most views are America, Panama, Japan, and Canada, in other words Janet’s and my family connections.  Besides, most of my friends are in America.  There are a few hits from Brazil.

SUTENT NEWS: we are in week two, the skin and GI effects are in full swing.   (This is where I’m supposed to remember the TMI caveat.) 

It looks like there will be no interruption in medical service before April so this insures that I will get the CT scan I need.  When we switch to the new retiree system, well, I suppose there will be some changes in how we are treated.  Then the oncologist is going to retire anyway: more changes.  If SUTENT is doing some good, we will want to continue on it, and that is where the new Medicare A+B+GroupHealth system rules come in.  Just a reminder: SUTENT alone is $10,000 per month.

I remember when my Dad had his wisdom teeth removed; it was quite an arduous operation.  And ever since I’ve wondered, where are my wisdom teeth.  X-rays said they just weren’t going to be coming up.  I know I felt Solomonically deprived.  Now it seems that Sutent has uncovered one wisdom tooth; just in time for me to operate on one cylinder.  Well, if Temsirolimus can reduce warts, why can’t Sutent raise wisdom teeth.  This is strange stuff.

The pRCC listserv is a revelation, seeing what others go thru, how they cope, how they suffer. Some give up on the American system and go abroad, where life is cheaper and the rules are different.

Janet and I have formally given up on moving back to California and consider ourselves lucky to have a decent place to live in a decent town. 

“Step by Step”, mee ol’ dad used to say; “keep on trekkin’”…the next generation responded.

LOG DATE TUESDAY, night, 3/12/13

The strangest thing the oncologist asked me was:

“Are you experiencing cancer anxiety?”  

While I was thinking what that could mean he said he hadn’t perceived my cancer anxiety. 

I’m anxious about so many daily things, and yes, cancer is one of them.  And I’m afraid of what I read may be coming down the road.  But, no, we thought, I’m not experiencing what he calls cancer anxiety.  I just don’t focus on the cancer.  I’ve got plenty of other anxieties and stresses. Janet says I sleep like one who has PTSD.

As for progress, the blood work shows that we can continue with Sutent, as long as I can stand the side-effects.  And then in April we will see if it is all worth it, or, rather, if it is worth it at all.

The Sutent is wearning me down, typically, but we don’t have long to go.  We’ve been here before.  So to speak.

I know, there is no repetition, really, and yet Nietzsche wants Eternal Return; and Ram Dass and Ekhart Tolle want us to Be Here Now, and so the world can be confusing, but I’ll save that for another time and place.  In a sense, I still can say, I've been here before.

LOG DATE Monday evening, 3/11/13

The Sutent side-effects are tolerable.

I made it to work today, just for a short day.  I’m glad I can work, but I can’t wait to retire.  There seem to be a lot of these ambivalences pressing now.

I’ll see the oncologist tomorrow but am not expecting much.  It will be in early April that I’ll know if Sutent has done or is doing any good.

My attempt at using the pRCC listserv isn’t working: either I haven’t figured out the steps, or my question just is hitting fallow ground.  It’s probably a cultural thing which I haven’t grokked.  Yes, that’ll date me. 

LOG DATE FRIDAY, 3/8/13

The second round of Sutent is better than the first.  From my phenomenal point of view it bothers the GI tract and the skin foremost; from the doc’s point of view it is a danger to the heart and liver.  But we’re not so worried this time.  It might work and I might be able to live with the side-effects.

I manage to get to work and back today and it was good to see my co-workers even though we can see my eventual retirement coming.  It’s a strange time that one doesn’t get to rehearse or repeat.

There’s a curious reaction I want to mention, I have no name for it right now.  I’ve listened and read enough to know that for many people cancer becomes a battle, a crusade, a fight of good against evil.  I don’t know why but I don’t have that feeling.  It’s not that I wouldn’t love it if the Sutent worked.  And cancer does rather take over one’s consciousness.  But not entirely.  There are plenty of times when I feel that the big C is just another piece of the context, just another of the many things beyond my control which I have to deal with.  And then I think: what else is anyone else doing, but dealing the best they can with what they are given.  

LOG DATE Tuesday, March 05, 2013

Advice isn’t something I should spread around, I mean, according to my own ethics; I usually manage to bite my tongue before I utter unsolicited advice, but today I gotta.  I gotta say this:  You gotta stay on top of your health care providers.  I have to remind them of tests, of prescriptions and of my general situation.  OK. ‘Nuf said.

Generally, I am very pleased with my HMO, but some tired old part of me remembers when doctors did the caring and one could lay back and be the patient. Now, it’s self-care or God help you, and God help you anyway.

Now we’ve got the prescriptions; we’ve got about a dozen to keep track of.   And the blood work tests to be done just before the Sutent on Thursday. 

Sometime in April I should find out if this has all been worthwhile. It is not impossible that the Sutent will hold the tumors at bay; we know some people do survive years on Sutent.

Log Date Monday, March 04, 2013

I made it to work today. Just being able to do that was good. But whatever I do wears me out; nothing seems to come easily anymore.

Now tomorrow I have to track down doctors or pharmacists, maybe both. And don’t forget Social Security: the clock doesn’t stop ticking. I can feel the ratcheting.

It is good to see everyone at work, and they are amazingly nice, and very patient. But I’m still feeling inadequate. And strangely tired. This part of the job trajectory I’ve never had to go through before.

This is supposed to be a pRCC blog and I don’t have much to say about pRCC except to observe that it has diminished me, regardless of symptoms, regardless of cures.

This week I will start up with Sutent again. After 4 weeks, we will get a test, a ct scan, and then we will find out if this has all been worth it. It’s a form of high-stakes gambling, except you don’t get the option to pass.

I'm thankful for all the prayers and positive energy and am mindful that things could easily be worse.

Log Date Saturday 2013 03 02 13 33

A resected toenail is not a pretty thing, and nail polish won't help. This was a wedge resection, and I hardly believe I heard correctly, but I'm supposed to soak said nail remnant in warm water 3 times a day for six weeks, each time getting a fresh bandage. I hoping I heard that incorrectly and/or there are alternatives. Such chores go against my lazy nature. And there are 3 more nails to do. I think I'll let him get the big right toe when I need it less for driving. The other two are candidates for total nail removal. He mentioned pulling the nails off and leaving a little poison behind. Cheerio. This is the second week off Sutent and I can tell there is a difference in the mouth. Every little bit helps. Sutent resumes this week. Janet and I cope daily, and frankly, all things considered, I think we are doing pretty well. I still hope to hear from others with pRCC, to compare treatment paths. Love and blessing boomerang back to you and all around (it's really wild).