What?! Nothing to say?!

Saturday, November 23, 2013

I thought I'd have no medical news until

1.  January and the PET scan, or,
2. The tumors really kicked in.

But it’s neither.  It’s really good news: the further I get from the chemo the better I feel.  It is clearer and clearer that the cure really was worse than the disease.  I feel so much better, it’s like clamps have been taken off my mouth and brain, not to mention the other body parts.

I feel so much better off chemo, it’s going to be hard to get me back on it.  Even though there is a new drug for papillary renal cell carcinoma, Evrolimus, it would take some arm twisting to get me to try it. 

Anyway, the oncologist has said radiation is probably next anyway.   Personally I favor cryoablation, but I don’t know if that is allowed or possible.

So there’s the good news for a change. 

Here’s hoping winter brings you much bonum too.

Ciao,

Thallervale

11/23/2013 7:18 PM

Angiogram

Dear Folks, It's Janet who is going in for an angiogram tomorrow, so light your candles and power up your prayer wheels.

If you fly in your mind over all the homes on the planet, do you find any that are not in need of care?

Maybe that is why it was said "Pray without ceasing" or why the prayer wheels are hooked up to water wheels.  It seems like a very impractical instruction, until you see if from the needs pov.


Janet and I, we do hope, will be home safe and sound this time tomorrow.

Thanks for caring,
Blessings,
Dale

All Saints' Day : Reprieve

Friday, November 01, 2013

REPRIEVE

The visit to the Oncologist was today.  After waiting 6 weeks without chemo to see what the little critters would do, the answer is: not much. 

Some tumors have shrunk, some are indeterminate, and some are growing, but not rapidly.

So the doctor’s advice is to take two months off chemo and check on the critters then, with a PET scan this time, because he knows he needs a better picture, but he also knows it can be difficult to get the HMO to agree to the expense.  We’ve done very well with our HMO  so far, so I can be optimistic.

Two months without chemo is like going on vacation.  Especially as Janet is retiring more and more.  Something we can look forward to in the dark wet winter.

Best to you all and yes, intentions are things.

Thallervale

11/1/2013 7:01 PM

...better as time goes by...

Sunday, September 15, 2013

Feeling better as time goes by

Or, as the toxins go bye-by.  I’m in week two sans Sutent and generally feel better.  The only time I had a week three without some chemo was the week of my retirement party, when I wanted to be less toxic than usual.  Now we are aiming for two months.

This is the second time that the docs have decided that the side-effects (negative) outweigh the benefits.  I think we are waiting for palpable cancer symptoms, and after that, well, I won’t go there now.

I’ve got six weeks during which I can reasonable hope to have better energy and I hope to get some work done.

Blessings.

Thanks.

Ciao.

Thallervale

9/15/2013 11:24 AM

Release!

Wednesday, September 04, 2013

Released.

The good news from the oncologist today is that he is willing, even recommending, a hiatus with the chemo, to give my body a chance to function better for awhile.  Of course the risk is that we are giving the cancer a chance to show its true colors, maybe even parade around strutting a bit.  But Janet and I are delighted at the suggestion.

We are going to try two months san Sutent, and then do another CT scan to see what’s happened.  Just the prospect of being Sutent free until the fall makes me happy.

I had actually asked the oncologist last time if we could take a break from Sutent, but then he did not think it was a good idea.  When I reminded him today that temsirolimus almost killed me he looked surprised.  But he could tell that continuing on Sutent is a sure sentence of chronic discomfort and disability.  So we are going to take a chance and see what the cancer will do without Sutent.  We can always go back to Sutent, he says; best to keep it in the fridge.  

So that’s the good news; that’s what we think is the good news; that’s what we hope will be the good news.  

Aloha,

Thallervale

9/4/2013 7:06 PM

Quick Update

Thursday, August 22, 2013

Quick Update

One week, Sutent free.  Factual; yes.  

Can’t say much more.   

Can’t allow myself to say much more.

Neither the good details nor the bad details are details I can allow myself to say. 

What can I say?

I can say that next week I have to go back on Sutent.  

I can say that I must do so without seeing my oncologist.

We will do no checkup nor test until their time.

They wait for us like unripe possibilities.

Meanwhile, tick-tock, we must proceed.

They say time is not like a river and we may not compare ourselves to riparian flotsam.

That being the case, I will not.

Oh dear, I can see that I have wandered from the medical into the metaphysical again.

There is only one way to restrain myself.

I must go do that.

Ciao.

Thallervale

8/22/2013 3:22 PM

Barb is cancer free

That's the news today: Barb is cancer free!
See:

http://barbfeenstra.blogspot.com/

Greetings: a murky hand rises from a swamp...waves...

Greetings from swampy Sutentlandia.

It's all so familiar now, familiar and unpleasant.
It's so reminiscent of the
"you are being punished for your own good"
syndrome.

How many years did I have to meditate on  just desserts?

Oh, this is the medical blog.
Ah.  Well, then:  the Sutent side-effects are certainly palpable and the Sutent benefit is about as obvious as a Trinitarian discussion.
Is that medical enough?
Maybe I ought to switch to my general blog:

http://golbselad.com


Aloha to all you out there, where-ever you may be.

May you live as long as you want and not want as long as you live.

On the Sutent roller-coaster again.

Thursday, July 18, 2013

I started with Sutent yesterday.  I can’t say that I feel any different.  Some of the Sutent symptoms continued right thru the hiatus, the pause that refreshes between a month’s worth toxic medicine.  There is a slow motion, delayed reaction that I cannot predict.  Just take a day at a time.

Even with two weeks off Sutent, my fingers felt like they were about to blister.  So it goes.

I am increasing the percentage of raw plants in my diet.  Let’s see how that goes.

That’s about all for the medical news.  

Psychologically, I feel quite different than during rounds one and two.  There is more determination tinged with bitterness.   Bitterness was the one taste that remained when my taste buds were at their most atrophied.  I love the bitterness of perfectly flat, non-sour espresso.  The psychological bitterness is another thing and I strive to accept it only to vitiate it.  The most powerful empires absorb, co-opt, we used to say, and move on.

So much for the soma and the psyche.  The rest must rest elsewhere.  I can't help being hierarchical. 

Aloha

Thallervale

7/18/2013 12:52 PM

Round Three

Round  Three with Sutent                                                        Friday, July 12, 2013

Ok I can breathe better now.  Six hours of activity is enough to make me have to stop and rest.  Hence the terseness of the last post.

The new oncologist says there is no obvious growth of the tumors, that the cancer is held at bay, and that my blood work shows I’m stable.  He said there was no better alternative to continuing with Sutent. 

My bet that there would be no dealing with my symptoms proved true.  I’ll have to take them elsewhere.  In other words, I still have no symptoms of kidney cancer.  Strange, isn't it.  My symptoms are classified under less than optimal living habits plus all the side effects of the drugs.   

I asked if there were any new alternatives.  He said there were 8 drugs available.  I asked “are they for papillary RCC?” and he said, no, none are particularly designed for the papillary type.  The tests are all done on the broader category RCC, or should I say, RCCs?  So it is still a crap shoot.

There is no denying that I was hoping for a better alternative.   So this time I’m going to make one: I’m going to try my own home-brew of complementary medicines and exercises.  I’ll see what naturopaths, chiros, et c., I can get thru my Group Health.  I’ll beef up the percentage of raw plant food.  And so on.

This tendency has a long history with me, all the way back to the diet of “water and pulses” from my childhood stories.  I’m pretty sure it is in the Daniel stories.

A friend loaned my Andrew Weil’s Integrative Oncology early in this cancerous phase of life and from it I learned that he was suggesting that healthy living options were the best options.  And at the time I was only looking for someone who had options for “papillary renal cell carcinoma” and he didn't, so I didn't follow his advice.  But in a sense, my “complementary option” is the same thing.  Will it help?  Will it matter?  Time will tell.

Thanks for listening.

Aloha.

Thaller Vale

7/12/2013 7:05 PM

...and the good news is...

...I'm stable and should continue on Sutent.

...and the bad news is...continuing on Sutent.

That's the briefest flash.

More later.

Aloha.

Thaller Vale

CAT SCAN

Wednesday, July 10, 2013

The CAT scan went well; it’s becoming routine; the power port helps, being sedated helps, having a loving and intelligent helpmeet helps.

We took the discs immediately and hand delivered them to the oncologist’s office.  The Radiologist report comes later and can be online.

The symptoms I’m watching are two: 

1. a pain around the liver and 
2. an electrical shock that runs from fingers to shoulder on the right.  I’m learning to avoid certain postures and gestures.

My bet is that the CT scan will not show any grounds for explaining these symptoms. 

As for tumor growth, well, I’m willing to wait and see.  

I’m considering treating the symptoms with complementary therapies beyond the AMA.  I’m considering dropping the AMA treatment entirely.  (You should know that my considerations can be very brief flashes, barely time to be present, and yet they count.)  I’m not telling you all I’m considering.  Filtering is the only way to live.  Existence is form and form is limitation. 

That’s all on the medical front for now.  Friday we will know more.

Aloha.

PS: as I don’t know who reads this, and as it seems rather weird, I mean, like who would subscribe to audio-tapes of dinner conversations at a nursing home, oh no, that’s going too far.  Anyway, because of those feelings, I’m considering (flash) making this non-public; all those of you on my mailing lists would have private access.

And, the more I put on the other sites, the more limited this blog will be, to what it always was, a papillary renal cell carcinoma blog.

Cheerio.

Thallervale

7/10/2013 1:32 PM

SUTENT done and gone

Wednesday, July 03, 2013

The sutent is over.  That completes one half year on sutent.  Sutent sure beats Temsirolimus.

The last week of Sutent was rough, compounded by the heat and the pounding of the roofers each day.  But we have survived and have a nice marketable roof now.

Next Monday, they will do the CAT scan again, and then later in the week, the new Oncologist will tell us what’s what.

For more general news, see golbselad.com
.

 Thallervale

7/3/2013 7:14 PM

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

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.

SUTENTILANDIA

Saturday, April 27, 2013         8:20 PM

After the wonderful retirement party, after the gracious Reiki treatment, after all that goodness, I had to take that pill.   And I must keep on taking them for the next 4 weeks.

The bloody effects have started; the details would not be helpful.  But I don’t feel as demoralized as last time.  The first time I took Sutent I had already survived a nephrectomy and a bout with Temsirolimus (that nearly killed me) that left me with several chronic conditions.  Now I feel Sutent might not be so bad and the further I get from Temsirolimus the better.  And, of course, I am more aware of what precautions, prophylactics, and palliative care to take.

I feel so non-demoralized that sometimes I indulge in a thought experiment that goes like this: even though pRCC is fatal, sometimes I think the cancer has saved my life,  I think of the other ways I could have died, and I think that now I have some time to do some deeper core/Coeur work.

So I hope and so I hope the best for you too.

SUTENT ACQUIRED

Friday, April 26, 2013

4/26/2013 4:56 PM

Finally, I’ve managed to get in my hand the full 3 month dose of Sutent.  It was hard for the system to sell me these drugs now, but the system felt better after (1) it enjoyed several human deliberations and (2) it felt it only sold me half in one container and the other half in another container.  As long as everyone is happy.

That’s my medical work for today.  The day started as a typical grey-green day but has blossomed into a lovely spring evening.  The Sutent effects have started up, but not so bad as to keep me totally house bound.

On Mother’s Day it will be a year since the diagnosis.

From benevolence flows beneficence.

The Morning After

Thursday, April 25, 2013           4/25/2013 12:09 PM

Happily, I feel much restored now.  It may seem that the last post was not much about pRCC, and, ostensibly, you are correct.  But my retirement was and is very much about pRCC.  

Now I’m on Sutent again, Round Two, and I can already feel it.  So it goes.

Kitsap is still beautiful, and I have to absorb the many kindnesses from so many people.

Here's a picture of the rose quartz hearts I left with my wonderful co-workers.

Onward and forward.   (Yes, at times there are shadowy echoes of my father who drove an Army jeep in WWII in France.  Early training does hang on.)

Retirement

Wednesday, April 24, 2013          

I have been overwhelmed with kindness, from many people and many sides; I have swallowed the toxic pill of goodness; and I’m emotionally and physically exhausted.  Perhaps I can speak tomorrow.

For now, all I can say is: thank you all.

Tchau.

MRI conclusion

Tuesday, April 23, 2013              4/23/2013 9:00 PM        MRI conclusion

Yes, the Nurse confirmed that the Doctor agreed with what the other Nurse had said the Radiologist had interpreted: no visible metastasis in the brain.   

I also got a Nurse and a Doctor and a Pharmacist to agree that it made sense to have the full course available of Sutent, before I started the course.  The Pharmacist said it was in the pipeline and that I could pick it up on Thursday, but they just had to get the software to co-operate as it doesn’t like to dispense a $10,000 dose so close to the first $10,000 dose. 

28 capsules of 50 mg each adds up to 1400mg or 1.4 grams.  A gram of gold costs $45.73, currently.  No wonder they are so touchy about it.  (see: http://www.goldgrambars.com/ )

All in all a successful day of nudging on the health care providers.  And a lovely spring day.  I felt glad to be in Kitsap again in the spring.  It’s a visual treat.

Spring in our backyard

First Monday as Retiree

April 22, 2013 

Dark for hours, definitely a spring night after a lovely spring day.  

The good news is that the radiologists say that MRI shows no metastasis in the brain.  The next phone call said, hold on, the Oncologist wants to review the MRI himself.  So more tomorrow.

I’ll probably have to nudge 3 agencies in 3 cities tomorrow.  Not only am I asking for 3 different “controlled substances” but I’m asking for more Sutent before I even start the first half.   I think my Oncologist’s retirement, and mine, complicates Round Two, and I’m just asking that I have the full course on the table before I start Round Two.  It’s 4 weeks on and then 2 weeks off and then “bis” (at least I somehow remember that as a repeat in musical notation)(Is that Portuguese or English that I’m remembering?)  I only have enough Sutent for half of Round Two.  I don't want to risk the Powers That Be changing their mind in re Sutent, leaving me with just half the normal dose.  It will be interesting to see how the argument goes over.

Please try to imagine me enjoying being 2 weeks away from Sutent.  For now I can eat crispy stuff without pain and even enjoy some sweet stuff without distaste.  I’m trying to notice and remember how much more awake and aware I am now.   Some of the side-effects don’t go away, or haven’t, but many have and I feel much better this week, overall.   Gotta enjoy what you got while you got it. 

MRI and beyond

4/20/2013 11:01 PM  One more note.

The MRI results has not come thru yet.  It’s best to not interpret that at all yet. 

I hope early next week I’ll get a call from the Oncologist.

Oh…and I retired today.  We will finalize goodbyes and material transfers Wednesday.   I hope.

And then I’ll resume the SUTENT diet.

And start a new phase of my life online.  I hope. 

Doing a lot of hoping tonight.  Most every night, really. 

Barb's blog

Saturday, April 20, 2013   22:46

It’s late but we’re still up.  

I want to point you to my sister-in-law’s  blog.  

It was Barb who got me doing this blog to begin with. 

So here it is:    http://barbfeenstra.blogspot.com/

Please send her your prayers and positive energies howsoever.

MRI done, and work's end approaching

Thursday, April 18, 2013

A grey evening again.  The ol’ toe doesn’t like to walk or sit or be near the ground.  Up until now, I’ve been trying to stay low, not even sit up, cuz the ol’ toe says, please, leave me high and dry.

Now I can say the MRI went fine.  We don’t have any results yet, but the technical part was ok. 

This could be brief, this could be over; you've got my update.

Saturday is my actual last day at work.   And I do have things to do to finalize and clear out.  But Saturday, finally, I’m going to get some home training in doing my own INR, the measurement of the viscosity of the blood.  They seem to think I’m going to be on blood thinners for life, and that they might as well loan me the machine and give me some training.

Tomorrow, I just have to play by ear.  I never was very good at playing by ear, jamming; I was much better at learning by rote until the music flowed in the blood.  And that takes repetition and practice and life doesn't seem to work that way.

Not Samson's jawbone

Wednesday, April 17, 2013  

11:58 AM

More good news: the jawbone stuff is fine; it’s just slow to heal.  I used to heal more quickly generally but the chemo has slowed me down.  I used Janet’s local dentistry and they were very nice and saved me and my toe a long drive.  

The Dentist took a picture of the wound for later comparison.  I asked him if it was in jpeg form.  He said he thought so.  I asked could I see it. And he took out his iPhone, and enlarged the shot and showed me the tiny ulcerated area.  Cool.  

All’s well with that now, plus one more instance of handheld computing entering our lives. 

Now there’s time for lunch before I go get my head examined.

Ciao.

Tuesday and all's well...

Tuesday, April 16, 2013   9:54 PM

I suppose it is late night but it has just become dark so it doesn't feel late.  

I’m fine; I’m ok.  You don’t have to read any further.  The rest is just me wanting to write.  De facto admittance of selfish self-expression.   I’m really ok, all things considered.

The old right toe took the whole day.  It started out simple but after the procedure Janet and I went to lunch and then I was going to get to lie down and elevate the foot.  That’s when I found that the sock was bloody; the bandage had bleed through.  So back to the phone and the doc was great, he just said come right back and we’ll take a look at it.  You see with all my blood thinners there is a danger of prolonged bleeding.  But when he, or I should say, they, (because the kind nurse did the unbandaging and bandaging,) got it all unwrapped it was found to not be bleeding much at all. 

So the judgment was that I had stayed on my feet too long instead of going right to bed.  So they wrapped it all up again and I went home, took pills, and tried to lie still and listen to music.  Seems I use Spotify during active daytime for specific musics, and Pandora at night when I’m willing to listen to what they call “a radio” themed around a composer.  I've got quite a list.

I just hope the toe will be good enough for tomorrow, because I must get around.  First it is the dentist in the morning, because that filed down jaw part is still hurting, and, instead of going 140 miles on that same right toe to my normal Seattle clinic, I’m going to try Janet’s local dentist. 

And then in the afternoon I have to go get the MRI done in another city. 

This tells me the old toe isn't going to get a lot of rest tomorrow.

So it goes. One more day in the march towards retirement, when I start my online life.

Blessings on you all, if you read this, and even if I don't know who you are.  Blessings, by definition are always good to get. 

Monday Evening

4/15/2013 7:31 PM

Monday twilight, almost windless, what passes for balmy here, birdsong mixing with the mechanical sounds of cars and airplanes, plus a few human sport yells.

I made it to work today, definitely a victory of sorts.  It’s all bitter/sweet now, this being my last week, but I must move on, and I don’t think they’d let me change my mind if I could change my mind.  I just hope the new financial mechanisms work.  And I do feel some excitement (tempered by not wanting to tempt fate) that my new retirement life will be successful.

We will postpone restarting Sutent until after the goodbye party.  But the side-effects have never really gone away, neither the diseases nor the symptoms.  One patch is reviving itself from Temsirolimus days.  It can’t be that it is cyclical or of some simple waveform; it seem perversely unpredictable. But, anyway, it was good to get to work and back.  It may take a few times to ferry my stuff back and forth, and that’s a 140 mile roundtrip each time.

Tomorrow, some toe work, but I don’t expect that to slow me down much more than I already am.  Wednesday, a brain MRI; I consider myself fortunate that the Oncologist does not hesitate to prescribe this test, because I am worried.  I've forgotten if we have scheduled an interpretation session; I think not yet.

Saturday I’m going to get equipment and training for monitoring my blood because of the pulmonary embolism; someone will actually come to our home and teach me how to do it so I don’t have to use the clinics for this anticoagulation measurement.  The way one clinic did it versus the way the Oncologist office did it had almost a 24 hour difference.  At the Oncologist they could prick my finger and give me the results within 2 minutes.  At the clinic they had to puncture a vein and send the blood to another city and wait a day.  Such discrepancies irritate me and so I asked for the machine the Oncologist’s uses for me to use at home.  I figured if I can learn to inject my belly twice a day and I can easily do this.  When the health care workers ask me if I felt I could do this myself and I tell  them I’m already pricking one hand for diabetes and had to shoot up my belly for weeks, they stop, and advance me one more step toward my goal.  I've been trying to get this for some time now, all because I don’t like their inconsistency.  There is one sensor that I find very difficult to turn off and that is my sensor for inconsistency.

Spring time in Kitsap definitely makes it easier to reach for more positive energy.  I’m being positive, right? I don’t think I have crossed the nag line yet.  What was that ol' song Dad sang? "...whenever was heard / a discouraging word / the cowboy was kicked off the range."   We don't want that just yet, do we.

The day after.

    4/11/2013 8:01 PM       This is Thursday, sunset time.

Time-warp, foggy tunnel, drifting in the Sargasso Sea; these images come to mind in re the last 24 hours.  If it hadn’t been for Janet I would have missed a port flush appointment.  The docs in PO seemed so behind that I didn’t let them work on my toes today.  Yesterday the medicos in Bremerton were so slow we had to say we’d come back tomorrow (that was today) and still we had to nudge and beg to get a small procedure done.  My mind is partly on vacation as I try to assess what I have to do before I go back to Sutentlandia; I hear there has been civil war over there again.

Other than the medical fog, it’s been a lovely spring day.  I can’t believe I actually retire next week.  We will have a Retirement Party the week after.

I asked the Oncologist to please defer the Sutent until after the party.  Even with the Sutent in abeyance, like now, the symptoms are occasionally too ugly to mention, so I don’t dare start up again with Sutent and try to do something social miles away from home. Hometown has taken on a new meaning now.  And I have lived in this very building longer than any other building in my whole peripatetic life. So it goes.

Anyway, the Oncologist said we could “fudge” the timing a bit.  And I asked for another MRI because I’m worried about this stuff getting into my brain, and I asked what would be our DEW line (he’s old enough to know what I mean) and he said “headaches and vision changes” and I said “I have headaches and vision changes” so he allowed us another MRI.  That will be next week.  My Primary Doc said that the brain changes wouldn't usually be cognitive changes, more likely headaches and vision changes and seizures.  Somehow I didn’t find any of this very comforting.  Maybe that is what the fog is around here, the fog of vague discomfort. 

I was by my father’s side when he had a minor seizure.  He was already hospitalized for a malignant brain tumor.  When he went into his seizure, I yelled so loud for the nurse (ie: “NUURRRSE!!!”) that she came running but had to give me a dirty look.  Sometimes I just can’t be trusted to behave.

Best to you all for caring.  I don’t know who all you are anymore because the readership is beyond my mailing list numerically.  But a friend who was in Asia tried viewing many times from several countries and I think must have activated some Tibetan prayer wheels too.   Thanks to you all. 

And the prize behind the second door is..........

Wednesday, April 10, 2013

Those of you who've said where’s your blog are quite right; I should stop mulling it over and send out the news. 

The Judgment is: stay with Sutent.  We have a situation where it seems to be keeping things stable, no shrinkage, but also no troublesome growth.  So back to Sutent.

I’m afraid that has put me into a bit of a funk, as life on Sutent is not pleasant.  I asked about other options of course.  But this is his best advice and I choose to go on trusting him.  I think what he is not saying is: you’re lucky this is working as well as it is.

I’m sure I’ll have more thoughts later, because the sun hasn't set yet on this beautiful spring day.  My mind will go on churning into the darkness, but you deserve to know the basic results already. 

Thanks for caring.  I still believe caring must carry some force.  After all the physicists aren't done with their Grand Unified Theory yet. 

The day before.

9-Apr-13: Tomorrow is judgment day.  I can’t say enough.

  

When I’m not fatigued, I’m anxious.  I've got pills for anxiety but none for energy.  You’d think they don’t want me to have energy anymore. They've almost got their wish.  I've asked for THC and testosterone but have been denied.

I got 4 prescriptions filled today and arranged to have my toes fixed Thursday, so the surest thing about Thursday is that my feet will hurt.  Oh well, I've got pills for that too.

I’m quite sure many have noticed this for years, but let me put in my two cents: when one who has some sense of transcendence (be it theological or spiritual) attends to the words of power from the mainstream, the deliberate absence of any reference to any transcendence leaves pieces of the story out.  For example, my AMA approved Oncologist, regardless of his true beliefs, sticks to the party line, which is, in case they have forgotten, that of scientific materialism, which is atheistic.  Another example, when David Runciman writes a wonderful article about Democracy in America in the London Review of Books without any place for any transcendence, he is keeping to the party line, the mainstream, the approved academic line.   You can lose your livelihood if you inject any transcendental analysis.

So it is a curious situation.  Seventy to eighty percent of Americans believe in some transcendence and yet the official line in science, medicine, all of academia (outside of church schools) will not allow that transcendence be a part of the picture or discussion.  It seems a strange situation, seeing we have no official body backing up this censorship, just a gradual drifting evolution of a country that is trying to avoid religious warfare.

Am I complaining about my Oncological treatment? Yes, in a way I am; and yet, if I knew how to get better treatment, I’d go get it.  Can you imagine getting the funding for a scientific study of the beliefs of those with pRCC?  Pardon me sir, we’d like to track you.  Officially you’ve got two years to live, and we’d like to know whether, most of the time, you feel some transcendental benevolence on your side.  We will then ask all those we know of with pRCC, and with no other variable, with only a Yes No option, and in 2 years we will revisit to see if you’re still alive.  Eventually we will have a simple database which tracks the longevity and one factor.  I’d like to hear the NIH committee debate that one.

Ah, no matter.  Today is today and I’m anxious.  Should I critique myself and say that a blog on pRCC is de facto an atheistic blog as the very term, the diagnosis, the tests and their interpretations, are all supposed to  be pure AMA in style and content; hence, I've strayed from scientific materialism.  Well, it can’t be helped now.  I’ll start up a more philosophic or theosophic blog after I retire.  From inside Academia, one can still say privately, God Bless Scientific Materialism, it needs all the help it can get.

LOG DATE 4/5/2013 7:31 PM

LOG DATE 4/5/2013 7:31 PM

THE CT SCAN AND WORLD VIEWERS

The CT scan has scanned and delivered.  We will have to wait until next week for the Oncologist to pronounce on the meaning of the Radilogist’s report, but we have already looked at it.

To our unprofessional minds it is saying that one bit has shrunk, one has stayed still and one is still growing but slowly.  My bet is that the Oncologist will say that Sutent is working.

Sutent: that’s the stuff whose effects haven’t even left me yet, but we get thru the day and Spring here is lovely, when the sun comes out.

I don’t really know who reads this; I haven’t learned to track views.  But I can guess who views it from Indonesia, Panama, Brazil and Ireland: all family.  When one showed up from Nepal I was mystified until Janet said that one of her friends was visiting Nepal.  The Germans and the Koreans will just have to remain a mystery. 

LOG DATE 4/1/2013 8:01 PM

C'EST FINI (well, almost)

I just checked and there is just one SUTENT pill left.  It’s a good thing too.  The so called side-effects need to be gone, please Sir.

One strange effect is that the hairs on my hands have turned yellow, and the old warts are all gone.  There must be a market for this: sell SUTENT saying it will bleach your hairs and remove your warts and call all the other effects the “side-effects”.    Of course the price ($20,000/treatment) and the possible side-effects (heart disease and liver loss) might cool the market.

Whether this is strange or not, I don’t know, but SUTENT seems to be burning holes in my finger tips.  Yes, this is strange, might as well call it so.

I had my eyes checked today for better lenses and the Doc still says my eyes are too unstable to be worth new lenses, unless I insist, and then you can guess who has to pay for those new lenses.  As my glucose has stabilized, I have to assume this is another of SUTENT’s  special effects.

So, a very special time will be ending tomorrow.

And then next week we will be told if it has been worth it. 

The irony is, if SUTENT works, I’ll be back on SUTENT, and saying “Thank you Sir!”.  So it goes.

(Yes, I know the punctuation is idiosyncratic, but I consider it more logical that the “correct” form.)

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.