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.