Log date Wednesday, a grey morning

pRCC blog 2013 02 27 1029
Dale Soules
thallervale@gmail.com

The good news is that the PCP says my glucose levels have stabilized.
This means the eye doc is willing to do a re-check and make some new lenses.
So soon I should be back to 20 20 vision.

Sutent will be resumed on March 7th, yikes, that's next week.
Sutent may, in fact will, begin to upset the balances again.

After 4 more weeks of Sutent, they will do a CT scan to see if it has been helpful at all.
If it is, and we must fervently hope so, I may be on Sutent for a long time.

I have made more contact with others with pRCC and find that most of them have different treatments and many of them take radical measures.  So far I'm staying on the AMA conveyor belt.

This pRCC medical blog was started because we knew it would be wrong to not answer the questions about my health, questions from those who care.  But I feel the restriction of the blog.  I care about much more than the cancer.  I may soon have to make another blog about topics of more interest to me.

Log Date Tuesday 2013 02 26

The good news is that I get to keep my toes.
But some nails need "resectioning".
That will be Thursday's fun.

There is some diabetic neuropathy, but not serious enough yet to treat in any way other than the diabetic treatment I'm already getting.

On the sleep front, they want me to do the sleep machine recorder thing tonight and give it back to them tomorrow.  They offer no explanation for the loss of data, nor any new instructions that might veer fate towards better data capture tonight. The first time they gave me instructions and they got no data, so now they give me no instructions. Hmmm.

Tomorrow marks one week sans Sutent.   Count you're daily blessings. And I do, at least metaphorically, no, it's not quite metaphorically, it's more like magically   You see, I've never been very good at counting, but I've always been blessed.

Log date Saturday 20130223

Who said the side-effects would stop when the Sutent stopped?
Ain't true.
Some are the same, some are worse.
Nothing unbearable, just unpleasant.
Seem impossible to figure this out.
I guess that means I have to be more patient.
So it goes.

What's the score? 4 operations and 6 diseases.
Opps! I forgot.  I'm actually glad to be alive.
And feeling fortunate for many reasons.
Strange.   Sometimes I think everything just may work out.

Log date Wednesday the 20th of February of 2013

Today is the last dose of Sutent.  And if I’m reading my oncologist correctly, the end of the Sutent buildup, meaning the symptoms should decrease.   Should.  Sounds good anyway.  Seeing how the effects of the Temsirolimus have not gone away, I’m allowing myself some skepticism.  I’ll take two weeks off from Sutent and then start up on another 4 week course.

I frequently think I’m giving you too much information, but then I remind myself that you have only to turn to another screen. 

The docs can’t see my feet until Tuesday.

The sleep study people lost all the data and say I have to come in again on Monday.

The Phlebotomist said today’s blood has to go to a lab in Tukwila before I get a reading.  This is the same anti-coagulation reading that is given to us immediately when a different person pricks my finger and reads the INR number of a little hand held meter, much like my gluco-meter.  I wanted to see if they could reduce my blood thinner as I think it has gotten too thin already.  In my layman’s mind, thin blood and rashes and sores are not a good mix.

But I’m on the AMA conveyor belt.  Tomorrow I should get the next allotment of Sutent, plus some other drugs.   I got on this conveyor belt and I’m not getting off until I feel the AMA options are exhausted.  I’m already exhausted, so let’s hope the AMA has some other tricks up its sleeve.

I’m still finding it difficult to find others with pRCC, so perhaps I’m going about it the wrong way.  I thought it would not be too difficult to compare treatment paths, but everyone is so different.  And I can only afford moments  on the web before I get tired.  Like now, so I better quit.

Log: Sunday evening

Thanks to Styron I have a phrase: Lie down in darkness. 
That’s what it feels like and that's what I do.  The range of culminating symptoms gather and force me to lie down in darkness.  It’s strange when I can no longer rely on page or screen for entertainment or education.
Fortunately I still have music.

The PCPhysician says hold steady.  

The Sleep doc says, opps, we don’t have the data, we may have to retest, this after ignoring me for weeks.  The Oncologist says, finish out this week with Sutent and then take 2 weeks off.  

The diabetes doc says you better come see me and have your feet checked.  The eye doc says, it can’t be helped, your vision will change with your blood glucose levels; some diabetics, he says, have 3 pairs of glasses, for high, low and medium glucose.  I didn’t choose to go that route.

This log entry needs a divertissement, but I’m afraid I don’t have it in me right now.  

Wednesday night,

"Calling Dr. Billy Ruben" That's the old interns' joke that my oncologist shared with us today.  The real news he was giving us was, though I'm slightly yellowed, my bilirubin is not out of range so we can continue with the Sutent.  One more week and then we get two weeks to recuperate. Then 4 on and then we can finally do a CT to see if this is worth it.  The skin problems continue their irritating migrations.

Something is wrong with my eye.  The oncologist and associated pharmacists don't think it has anything to do with Sutent, so I'm going back to the ophthalmologist who just saw me last December.

Now, would you like a divertissment or a divagation? Your choice. Here it is and it might make money in the right hands.

Picture a brightly colored T-shirt with large bold letters:

BIBER

This should be clearly legible across the room, but as you approach, as you reach the personal distance, within an arm's reach you will see in sober dark brown letters is:

Heinrich Ignaz Franz von, (1644-1704).  

Monday night

The fatigue has a way of blurring the days. I have to keep careful notes on my medications.
I've asked the docs if the Sutent could be diminishing my right eye, and they said, not that they know of.
It's also becoming obvious that Sutent affects the skin differently than Timsirolimus, so we are trying some new palliative ways, like gloves with lotion on the inside.

I've started to make contact with other patients with RCC or pRCC.  I can't say that it is an exciting process, there is a lot of web style hoops to jump through, but it does feel like something I have to do.  Siddhartha Mukherjee's book, The Emperor of all Maladies, made it so clear that the world of the patients and the world of the professional health care and research people are very different, and that patients have more freedom to speak their minds than do the professionals. I shouldn't hope too much, but I do hope to learn of some other avenues that patients have tried.  And it is encouraging to see that some do survive for years.

I don't know what I have to offer except my experience and my company.  Perhaps that will be enough.

Saturday evening and still some light lingering

I always feel better when the sun comes back.
Friday was a low day.  Some side effects I don't even want to talk about.  
Today is better. 

An hour after taking Sutent I feel little twinges in my heart and I imagine a tightness in my chest.  It is so slight it might be psychosomatic, which is why I haven't rushed the symptom to the docs.  My general doctor is saying that I can no longer afford to wait and see, that I need to call in every symptom, but I don't know if he understands how sensitive I can be.  (Notice that I'm not using any names in this public blog, except for already public persons, such as the following.) Thomas Nagel in his latest book, Mind and Cosmos, says science can not succeed in explaining the world because it can't explain our inner life, our thoughts and feelings. The chasm is obvious to me when I mention my symptoms (my feelings) and the docs read the blood panels; I've got feelings and they have charts.  This chasm is rarely bridged.  

I have asked several people if the blog is working for them, and basically, I find, that I started it out wrong by giving out the url for a day rather for the whole blog.   Should remedy that soon.  And of course it is more information that the previous emails, but you have freedom to drop in when you feel like it. Drop in and drop out. 

I also realize that blogs are categorically not logs or diaries and that a/v entertainments are expected these days; Google offers me many templates and they are all for a/v pizazz.  Maybe evolution will drive me that way, but for now this is the best I can do.

Now what I need is to see if Sutent is working and then to retire.   It takes patience.  

Thursday night

I managed to work some on Wednesday.
I managed to keep a dental appointment; I had missed 3 or 4 appointments due to the unpredictable destructiveness of temsirolimus.

For these things I am glad, but I am worn down.  I think the Sutent side-effects are concentrating on my skin.
Fortunately, the docs said the blood panels were ok, so my liver and heart are still holding up, even though my white blood cells are a little lower now.

I've started to make contact with cancer support groups and hope to find other people with RCC and especially, pRCC soon.   I'm not sure why I'm doing that except that I feel it might be good to talk to others in similar situations.  We shall see. And it may be preparatory to the switch from employee to retiree.  It is all so complicated.

Tuesday Morning

I was able to work yesterday, Monday, so that is a victory.

I managed to drive over 4 hours and work for 6.

The fatigue is heavy this morning, but I will recuperate.

I still have not found anyone else with pRCC, but the search is young.

If anyone finds that the email connection to me is or is not working  please let me know.

Is it worth recalling Ol' St. Ludwig (Wittgenstein to the normal world) saying:

"We do not live to experience death"

Friday evening

This blog is about papillary renal cell carcinoma, it's treatment and me (of course).
I don't know if it is a better way to reach family and friends than the email system I started with.
The email system was not everynight, like this blog.  So there is more information.
Perhaps TMI.

But you have more choice; you can tune in or tune out.
Some say I should offer an RSS widget so you will be notified of a new posting. As yet, I don't know how to   do that. If someone wants to show me how to offer an RSS, that would be nice. [oh, I see I've added a "subscribe by email" at the bottom...maybe that will do the same thing as RSS]

This is a public blog; I haven't felt the need to restrict it.  It is possible that viewers unknown to me will come across it; if it is useful to you, fine.  If, perchance, you to are treating pRCC and want to compare notes, please email me.  I've just finished THE EMPEROR OF ALL MALADIES and pRCC is not in there.  I have looked at the professional books on RCC but they are beyond my comprehension.  Should this come to the attention of another treating pRCC with Sutent, I would like to correspond.

Today's news: feeling stronger, the blurred vision returns at times, there is a little disequilibrium, like the inner ear is having a problem, and...I'm pretty sure I'm turning yellow.  As in jaundiced.  I must remember what they said in their brochure: "This is not harmful."

I'm past the first week of Sutent and the Doc is hopeful, so I will be too.

thallervale at gmail