Blogging on

Wednesday, May 29, 2013

Two of my readers have asked that I continue to blog.

But there is not a lot of medical change.

I’m mainly using my energy to work on my other projects.

The Sutent side-effects haven’t gone away, but they haven’t gotten worse either, so my tendency is to not say anything.  This,  I remember, contradicts my saying I tend to be silent when things are bad, and for that confusion I apologize.

When I can, I work on my more metaphysical projects; the writing is hard enough, but the technical web-mastering is something I’ll not be mastering soon.  So it goes.

There is a Sutent debate going on about whether 2 weeks on with 1 week off could be just as effective as the current 4 weeks on with 2 weeks off.  But, because we have not had a clinical trial to show this, the doctors can’t recommend the lighter sentence.  So it goes.

Over 8000 page views have visited my blog, and of course, most of these are not my friends and families.  Still, I’m leaving the blog open as possible and hoping for the best. If you want to write me use

thallervale at gmail.

Aloha,

Sutent stopped

Wednesday, May 22, 2013

I've taken the last Sutent for a while.

Now I get two weeks off.  Of course the symptoms take time to subside, but I feel psychologically better already.

Sometime in July we’ll find out if it is doing any good.

That’s all for now, in the strictly pRCC realm.  I’ve got to work on my other projects. 

Thallervale at gmail

A better year coming?

Saturday, May 18, 2013

A better year than the last one? 

This is my last week of Sutent before my two week break.  Though it is better than last time, I still look forward to the break.  Sometime during the second half of this treatment, I’ll find out who my next oncologist is, and whether we will continue with Sutent.

Looking back over the year, which was devastating, frankly, I’m amazed how well I am.  Last Mother’s Day, my mother and younger sister were out here; that’s when I got the diagnosis.  At the time my main pain was gout.

Actually, in my personal story book, I felt the first outburst of the kidney cancer in February of 2012.  It was extremely painful but as it passed within 24 hours, I didn’t have it examined.  If I had let them do an x-ray then, they would have seen the tumors and the finding would not have been inadvertent.

As it worked out, I got x-rayed for heart trouble in April, and one of the tumors was seen, so the discovery is categorized as inadvertent.   I mention these things because I can’t help wondering at the way we use statistics.  Those who's findings are inadvertent are said to have a statistically better prospect.

My youngest brother came thru in July.  We were still debating which treatment route to take, so they saw me just in psychological shock mode.

My oldest brother was the next family member to see me, in October.  By then I was recovering from the operation and struggling to get back to work.  It didn’t work.  I was too weak.

When my older sister came thru town in February, I was at my nadir, deeply depressed and weakened by pneumonia, which had not yet been diagnosed.  So my older sister saw me at my worst.

And then we stopped the temsirolimus.  The further I get from that the better I feel.  That’s what I tell myself anyway, and that’s how I account for the difference between the first dose of Sutent and the second.   So there is the possibility that the next year, year two, will be better than year one.

Is there not a strong impetus to make up our own stories?   Who knows, maybe there is a better story than the one I mull over.   And over.

Thallervale at gmail

5/18/2013 11:35:09 PM

Good-bye to my first Oncologist and onward with Sutent

Tuesday, May 14, 2013

The oncology visit went fine, except we had to say good bye to our Oncologist, as he is retiring soon.  He was good to us and we will miss him.  He said all the signs point to continuing with Sutent.

The liver was fine, the bilirubin, the white blood cells, et c.; all I have to is stick to the course and tolerate the side-effects. 

I've got another 7 pills to go, and then 2 weeks off, and then 4 more weeks.  By then I should have a new Oncologist.

It seems I can only do one thing per day, or one event, and then I’m tired.  That may explain why I haven’t gotten my other websites into presentable shape yet.   But I do find time to read.  Janet handed me a book set in Australia, better yet, Western Australia, one of my fantasy locales.  The Light between the Oceans by M. L. Stedman (©2012Grasshill Communications) was wonderful, a very moving story.  Here’s a useful observation from page 323: 

“I choose to,” he said.  “I can leave myself to rot in the past, spend my time hating people for what happened, like my father did, or I can forgive and forget”.

“But it’s not that easy.”

He smiled that Frank smile.  “Oh, but my treasure, it is so much less exhausting.  You only have to forgive once.  To resent, you have to do it all day, every day.  You have to keep remembering all the bad things.”  He laughed, pretending to wipe sweat from his brow.  “I would have to make a list, a very long list and make sure I hated the people on it the right amount. …”  

5/14/2013 6:34 PM 

thallervale at gmail

Anniversary

Saturday, May 11, 2013

5/11/2013 7:20 PM

Anniversary

Mother’s Day last year is when the pRCC diagnosis was confirmed.  Many of the stats use this diagnosis date.   Others use the start of treatment date.  My pRCC was discovered inadvertently, which makes my odds better.  And, of course, stats are stats and they don’t mention any individual.  What we all want is prognostication which includes us; that's the rub.

I’m adapting to Sutent and the chronic conditions.  What’s the alternative to adapting? Well, it’s not so clear.  There are degrees of adaptation.  I’m adapting moderately well, in my estimation, and furthermore, I’m still here and kicking.

I haven’t even gone to the workshops on living with chronic conditions.   Maybe next week.  Wednesday will be the end of this 4 week treatment and then the Oncologist will do an evaluation, just to make sure I’m ok for the next 4 week stint.  So it goes.  But (Galileo forgive me)…but, it still goes. 

Another death

Tuesday, May 07, 2013

5/7/2013 2:01 PM

A dear colleague has died.  I’ve just heard.  She will be greatly missed.

You may say “What has that to do with pRCC?”  …and all I can say is that having a fatal disease makes deaths around me reverberate more poignantly.  I’ve heard too many stories of Death visiting areas to not at least consider it.  I know why there is blood on the lintel. 

SUTENT, after all…

Monday, May 06, 2013

5/6/2013 11:49 PM

I had a good day and had wanted to say that this round of Sutent is not as bad as the first round, and it’s true, except this evening the nausea and flush set in for a while, so I don’t feel so positive right now.  My theory is running like this: Temsirolimus, especially so soon after the pulmonary embolism and nephrectomy (which alone caused its own episodes of diabetes) was unusually destructive.  So the first time I took Sutent it seemed like a continuation of Temsirolimus with the addition of more GI and skin disturbances.  But now Sutent seems, at times, much tamer.  The almost total fatigue of the first round is gone.  The further I get away from the events of September through February the better I feel, generally.  Sutent comes with some nasty side-effects, but perhaps I’m adapting.  One can gradually adapt to strychnine, I hear.

I probably tried to be too active today; it was a hot day and I don’t react well to being overheated.   For those of you who live outside the Pacific NW but still in the contiguous 48, you may not know that here the seventies are considered warm and eighties too hot; I don’t know how the rest of you bear up under nineties and above. Kyrie Eleison.  Fortunately the nights cool off; perhaps that is why I sitting up in the middle of the night under a fan, hoping the night air will enter our home. 

Lovely for the eyes

Saturday, May 04, 2013

5/4/2013 6:58 PM

If you couldn't hear the neighborhood, or if you could subtract the motor noises and the urgent human utterances, the calling and squealing across the yards, and left in the birds chirping (it’s too early for the wood frogs), it would be a lovely evening.  Makes a nice picture, though, a still life.  The air is perfect, a rare occurence.  It’s still a lovely evening.  Has to be.

Sutent is doing its trip alright.  Even my eyelashes look bleached and singed.  But it was much worse last time.  I’m sure the proximity to Temsirolimus made everything worse then.

I’m supposed to take my own blood viscosity measurements now.  And it took me 4 tries.  And that means using four sophisticated strips (and four holes in my fingers) so the Alere folk have to call me and offer more training; I've already explained that I think I’ll get it right next time, but they've called back: maybe I should have some more training.  Problem is I don’t need to take the measurement for at least a week now and they might send someone over again.  Either way, they are going to make sure I am encouraged to get it right.

It feels strange to be here, in Kitsap, in the neighborhood, strange, though sometimes I’m happy to be here.  I used to work and come home to sleep or recuperate.  Now my waking time, these lovely spring days, are in Kitsap.  I’m beginning to feel like I live here.   

Even if the dogs and humans and their machines all went on mute, I’d still hear my ears ringing.  Had ‘em checked out:  all’s well and there not a thing we can do for you. What a strange and marvelous world. 

The Neighborhood

Thursday, May 02, 2013

5/2/2013 11:47 AM

Seems I’m the oldest guy left.  At least in our contiguous properties.  First the owner to the south died, then the retiree across the street, and now the neighbor to the south that moved in after the owner died.  The rest of the neighbors are families with kids.  Of the contiguous.  So I’m the old guy now. 

Happy May Day

Wednesday, May 01, 2013

5/1/2013 11:59 AM

I can deduce from the stats that viewers are wondering what happened to my writing now that I am retired, so I’m writing, I’m writing…

It’s been about a year since the diagnosis, and I wish I could say that I am beating the statistical odds, but, no, I am still within them.

The SUTENT side-effects are proceeding normally, yet better than last time.  Personally, I think it is because of the time distance from TEMSIROLIMUS, which was destructive to me.   But these side-effects are not interesting nor nice, so I don’t want to describe them.  Besides, it is all tolerable to controllable.  Sugar will become distasteful, but not yet; I offer this picture as evidence.

I am still digesting the kindness of those who gave me a retirement party, a wonderful send-off.  And I am working on my next websites.  You may imagine that it is difficult for an old man to constantly be calling for help from what would be his grandchildren’s generation: so it goes. 

Soon I hope there will be a branch, so to speak: from this medical blog, will branch some more metaphysical websites.  That is, if I can learn the technical parts.  My experience is that it just takes time and determination.  Mechanical, is, after all, what we call things once we understand them.  I’m just not there yet.

My Best to you all.