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.)