6 Month CT Scan

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Two weeks ago I had the repeat CT scan.  This is, about 9 months after diagnosis now.  The scan was negative for metastases or recurrence of original tumor.  Good report.

The main symptoms now must be from post-surgical state, or Gleevec.  Diarrhea, multiple times daily.  Fatigue.  Fatigue in afternoon is profound, and in evening it’s all I can do to not sleep.

I took a week off from work to catch up and rest.  Slept for 2 solid days, and was near-asleep for 2 more.  Then got online and pounded away at the work backlog.

Have to be happy about the good report.  I’m glad for that.

November 2013

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Some observations and thoughts after my recent oncology appointment.

I’ve been holding my weight. Two weeks ago, my partner and I returned from a 2 week vacation, in China. It was a healing experience. Also exhausting. The photo, below, was one of many historic places and temples that we visited. Those places gave me perspective, and a great sense of peace.

Fortunately, it’s possible to sleep while flying from one place to another. I also slept about 12 hours at a time. That left the other 12 hours to see, hear, smell, taste, feel, experience. We returned a few days early, so that I could rest before starting back to work.

The appointment system at the oncologist office is dysfunctional.  Every appointment has had issues with scheduling.  This time, they notified me of my appointment, without working with me on the date and time. This was after stating, the next appointment would be in 3 months. This was one month later I wondered, why so soon. The response was, “Your oncologist wants to see you”. Then a day before, his nurse practitioner called, and told me she would be seeing me instead of him, due to schedule conflict.

I kept the appointment. The NP was more thorough, and listened better, than the oncologist. I was glad for that. We discussed my concerns about worsening renal (kidney) function. I was worried because mine decreased.  From the list of side effects, that does not appear to be an issue with Gleevec,  but it is an issue with CT scans.  Catch-22.  Scan is needed to evaluate for recurrent disease, but can worsen kidney function.  She pointed out, I had missed the recent lab result.  That showed some improvement in kidney function. So that was good. We also discussed my blurry vision.

I know, as a doctor that the demands on doctors, vs. allied practitioners, are different.  NPs and PAs can be awesome, and have an essential role in health care.   Anyway, I’m grateful for the NP and her kindness, compassion, and honesty.  She did a great job, and was very nice, and completely professional.

She also noted, they have minimal experience with Gleevec for GIST.  Very little experience.  I was wondering if my oncologist had any experience with Gleevec for GIST. I understand, as a doctor, that we often have to forge ahead in uncertainty, and often have to start somewhere. But I am honest when that happens. That honesty builds a trusting relationship. It also tells me what I need to do to advocate for myself.

It’s strange, being a physician, and dealing with the dysfunction of the health plan as a patient.  I know the challenges.  I know what I have to do in my own practice.  I like to think I’m more open, more “user friendly”, more compassionate.  The system overwhelms all providers, doctors, nurses, medical assistants.  But what I think we all deserve, without exception, are compassion, respect, and whatever dignity is possible.

The issues now with Gleevec. Or is it just aging? Or something else?

Fatigue. Not better. Learning to deal with it. At least fatigue isn’t painful. It’s not as bad as nausea, or diarrhea, or rashes, or other things that could happen. I have times with energy. Those are usually am. Afternoons I usually feel pretty wasted. Not sue how to deal with that. Trying not to make an issue out of it at work, just forge ahead and collapse at home.

Diarrhea. Episodic. Last night at the grocery store I had to put down my groceries and run to the restroom for a diarrhea emergency. Fortunately I got there in time. There was a small miss, but not enough for anyone to notice. Being honest here.

Blurry vision. I went to optometrist. She was baffled at the sudden worsening vision. Said it shouldn’t be the Gleevec. Their equipment confirmed the worsened vision. I got the feeling she didn’t know much beyond being able to prescribe corrective lenses. They are better than nothing. Retina scan was normal. Ophthalmologist appointment planned.

Muscle Cramps.  These were unexpected.  Wow!  They are dramatic.   Often I feel an incipient cramp and head it off by concentrating on relaxing the particular muscle.  Feet, calves, wrists, hands, thighs.  Nothing facial yet.  It’s weird.  So painful,  but in a way a muscle pain version of a sneeze.  When it’s over, it is such a relief.  So strange.

None of those are complaints.  I know every medication has effects.  Everything has a cost, or price to pay.  If this medication is life saving, or gives some reprieve, it is worth that cost and I will pay it with gratitude.   This is a description of my experience, not a litany of suffering.

So that’s it for now. Scan is in January. I’ll be sure to load up on fluids first, to protect my kidney function as best I can.

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Fatigue

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There are gains and losses with cancer.  I will ponder the gains later.  I know that’s unexpected.

The losses make more sense.  I took pride in my health, which I tried to maintain.  That’s hard in an obsessively hard working career, when nothing is enough and there is always the choice of, what do I not do as well as I truly want to do?  Even so, I always tried to eat well, do something physical, and avoid some of the worst habits.

With cancer, in this case a random mutation not thought related to infections, bad habits, risky behaviors, or even known genetic risks, the idea of “being healthy” is gone.

I also thought of myself as able to work harder, accomplish more, do more of what had to be done, compared to anyone else I knew.  I looked at being a hard worker as insurance against disasters.  And as my duty.

Now, the fatigue is omnipresent.  Before the cancer diagnosis, I thought it was aging.  I don’t mind that.  Everyone gets older.  What I didn’t know was, there was a cancer sapping energy too.

With the big tumor gone, and a few months of healing from surgery, I have to look at fatigue as part of the new status quo.  Or, in current words, the “new normal”.

Is it the presence of microscopic cancers? Residual products of the original tumor? Maybe, some malnourishment.  I’ve lost 30 pounds, mostly fat but some muscle mass.  With frequent diarrhea, and early satiety – feeling full with smaller portions, due to removal of half of my stomach – there may be some malabsorption.    Then there’s the Gleevec, with fatigue as a major side effect.

My oncologist suggested depression, as well as the Gleevec.  It’s true, with cancer there is grieving, but I don’t think this fatigue is due to depression.

I don’t mind the fatigue, too much.  It forces me to stop trying to always accomplish things.  But there are challenges.

I’m best in the am.  In the afternoon, I crash.  Usually at mid afternoon.  That makes work more difficult.  My schedule now is, full day Monday, off Tuesday.  Half days wed and thurs.  Then full day Friday.  That gives me Tues and Sat to recover from the full days.  The half days were am and pm, now both am, which should help.

Being “off” is a loaded term.   “At work” means seeing patients, continuous, with responses to calls, faxes, pharmacy and nursing, interspersed.  There are no breaks.  “Not at work” leaves follow up of tests, documentation, more pharmacy and email.  “Off work” is as much work as “at work”, but with fewer interruptions, less multitasking, and more self paced.

I’ve been working on how to do that on-line off-site work, better.  It was a challenge before cancer.  Many of my colleagues have quit over it.

I can’t quit.  My health insurance, including the Gleevec (wikipedia states $60,000 per year) comes via my work.  So does life insurance.  I’m not willing to accept, that I can’t provide that benefit for my partner to carry on when I die.  Work gives purpose to my life.  I value many of the people who I work with, and the day to day human contact.  Without that, I think I would become very depressed.

My oncologist wanted me to stop the Gleevec, temporarily.  I am not willing to do that.  Frankly, I think it’s unwise.  Gleevec appears to work by stopping growth of cancer cells.  Allowing cancer cells to grow, increases the chances of them becoming resistant to the medication.  The limited alternatives to Gleevec, such as Sutent, do not appear easier to take compared to Gleevec.  I want to save that for if/when my cancer mutates to resist the Gleevec.  Today I emailed my oncologist,  asking to continue Gleevec without a “drug holiday.”

So, I’ll continue to work on pacing myself.  I’ve made some dietary adjustments to help with diarrhea and nausea – separate post – and that might help a little with fatigue.  The schedule adjustment should also help.