Last week of Sutent

Last week of Sutent

Wednesday, June 26, 2013

All symptoms go (if you know what I mean). 

When will they be gone (now that’s a stupid question). 

Very taxing, leaving little disposable income (oh, make that energy).

July 8^th I believe I’ll get the next scan and they’ll tell me what’s what, oh no, they won’t.

We will wait, and meet with the new oncologist and then we’ll hear what’s what.

I can’t get my sites into good shape yet, but if you want a look, the vision project is out there in outline:

Knowvision.org

And my more personal blog is continuing at

golbselad.com

This one will eventually be incorporated into one of my disinterested truth sites.

Aloha.

Thallervale 6/26/2013 7:43 PM

Yet another death

Sunday, June 16, 2013

I hear that another colleague has fallen, that means he has died.  I’m glad I had a chance to work with him.  He worked in the same unit I worked in, but retired just before I did.  My colleague who died May 6^th was also from that unit.  We all worked together. RIP.

That unit has been more than decimated.  There were 8 of us: two have died, and I have retired, and another has left. That’s more than decimation; that’s being cut in half.  I feel for the fallen and I feel for the survivors.   I know I’m using battlefield metaphors but I can’t let the armed forces command all the terms.  Each life is a battle and not a minor one.  Kyrie Eleison.

Until you change the perspective.  That’s what consciousness does.

Thallervale

6/16/2013 6:29:21 PM

In the second week of Sutent

Friday, June 14, 2013

In the second week of Sutent.  (Rythmically this suggest riffing to the tune of “On the first day of Christmas” but I think I'd better refrain.)

Had a chat with the doctor today and we agreed that I seemed pretty stable.  There’s a new nervous radiation running down my right arm, but it may be nothing but a spinal maladjustment.  The skin and GI symptoms are no worse than they’ve been.

My energy is better in the mornings, so I shifted my warfarin to the AM, because I missed 3 days.  I keep careful notes on my drugs, and I carefully did not write that I took warfarin and in fact did not take warfarin, but didn’t notice, until, one day, awakening from a nap, I said to myself, whoa, I’m not sure I’ve taken my warfarin.  Both the note book and the pill box agreed: I hadn't.  Once again, I surprised myself.

I quickly took the day’s dose, and as I couldn’t  call the anti-coagulation team until the next day, I had time to take that day’s dose too, and then I did the INR blood test, and lo and behold, I was way out of range.  My INR is supposed to be between 2 and 3 (to prevent blood clots forming) and I was down to 1.1.

Like I said, I surprised myself.  At least I’ve learned to do my INR blood test; the first time I did it alone, it took me 4 times to get the measurement.  Now I can do it with one good jab.  So it goes.

I almost have enough energy to work on my websites once a day, at least for an hour or so.

That’s about all I have for the pRCC aspect of my life.  The rest is going into my other sites, which I don’t think are ready for prime time yet, not even ready for, what do we call the less-than-prime-time time?, well, just not ready.

   

Thallervale

6/14/2013 11:21:20 PM

SUTENT again.

Friday, June 07, 2013

I started the last half of Sutent on Wednesday.  Thus begins the last month before the oncologist can say whether this is worthwhile.  And I don’t know who that oncologist will be.

Nothing new with the symptoms, just more fatigue.

No progress on the other websites either.  Should I be more patient or more impatient?  Seems either path should work, but neither has yet.

I tried Google+ to see what effect it would have.  Many of you know I’ve declared myself post-facebook after a few tries; but I thought I’d give G+ a run.  Can’t say yet that I know whether the circles are hermetic or whether my one post went out to all in all circles. 

Too tired to continue now.  Goodnight to you all.  But that seems a strange thing to say.  It only works for me right now, and when a reader reads this, it won’t be applicable at all.  But, for you fans of synchronicity (one 20^th century meme I follow), you can know  then that I meant it way back then.

thallervale

6/7/2013 11:07:56 PM

Stats, and what to do with them.

Sunday, June 02, 2013

Last June I was shocked to hear that the nephrectomy might extend my life by as little as 3 months.  Wondering what’s the use, I spent the summer months doing some research and trying to see if there was any alternative.  What I found in the literature supported everything the doctors said, so I submitted to the recommendation.  All that you probably knew or felt.  But I can't help the retrospection.

I’ve spent much time thinking about stats, how they are mathematical creatures, and how the link from mathematics to our personal world is either (a) non-existent or (b) made up by our selves.    A simple example is that there is no average family.  There is an average of the number of humans in real families.  The average is a mathematical operation and cannot leave that realm.  It is we who apply the number and give it significance; this is a mental/psychological/spiritual operation; it is not mathematics.  So what puzzles me is how we apply stats to ourselves.  We know the house will always win overall, but that is statistically true, and everyone who gambles is gambling because stats don’t apply to any real person, so gamblers make a different meaning out of the horrible odds, and say maybe I’ll be the exception.  In the case of state lotteries the odds are one to the millions, and yet, we also know, generally, someone wins, almost every week.

When my doctor wrote that I probably had 6 to 12 months to live, I had to face again this conundrum of stats and the real; I believe the stats are real, and I’m quite sure that the world of mathematics can only refer to itself; there is no mathematical escape for mathematics.  And yet we find it useful to extrapolate from the number realm and we really do all sorts of amazing things with these numbers, including with numbers that can’t possibly exist, such as the square root of -1, which is very important to engineers.  

We are adding the magic ingredient, the application; and in this case, I definitely did not want to allow the application.  In other words, I have a choice in whether I apply the stats to me or not.

There is a psychological aspect of this too.  What is the difference between saying the odds of having a destructive crack-up on a highway is x% and then driving a hundred miles (on average) each day, between that-stat-and-it’s-application and the hearing an authority say officially this stat applies to you.

What is the difference with saying, as we all can say and defacto do say, that anyone may die anytime and so carpe diem, between that common generality and having an authority say this stat applies to you.

It has taken some energy on my part to accept all of this and still to maintain that stats are stats and in this case I’m not letting them be applied to me.  I think this is an instance of keeping the brain and the heart is separate compartments, and I don’t just mean the skull and the chest.  And of course someone will raise the Beckerian denial of death factor, but I must press on.

I don’t know if I have expressed myself well here; it is an intellectual and emotional embroglio.  Because I know that the mathematical and logical realms are self-contained, I know we have some freedom in the applications, and I’m sure I’m struggling to keep my heart at least free of the statistical implication.  But I can’t say I haven’t been warned.  I’ve never felt more of a gambler and never more blessed.

6/2/2013 11:22 AM

thallervale