CT Report

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Soon coming up on 2 years.  CT report was negative.

Having read a lot more about prognosis, I was concerned.  There isn’t much reliable data out there.  From what I read, my expectation is about 50:50 for recurrence.  I’ve been having some chest wall pains (pleuritic pains) with breathing, and when I look at my belly, it’s kind of asymmetric.  So I wondered about those observations being a sign of cancer recurrence.

I had read that other patients ask their primary doctor for the CT results, for less of a wait.  That did not work for me.  I knew the report was there, but was not able to access it.  That added to the time and, to be honest, there is some suffering in that.  I did some calculating.  The prevalence of GIST seems to be around 6 to 12 out of one million people.  Some will have undetectable disease.  My health plan has 500,000 patients.  So, in the health plan, there are expected to be 3 to 6 patients with GIST.  Then, divide subtypes of GIST, gastric, intestinal, Exon 9, Exon 11 – maybe 2 or 3 with something analogous to my presentation.  I don’t expect that anyone be experienced, only don’t try to feign authority when there isn’t any – hence, former oncologist is now former oncologist.

New oncologist.   He was excellent.  I am very grateful.  I have to drive 40mile north, to Longview WA, instead of 20mile south, into Portland – but with Portland traffic being so bad, the amount of driving time is about the same.  My new oncologist is more open, more knowledgeable, more experienced, more empathetic, more respectful, more human.  He discussed the disease with me and made a great deal of sense.  He impressed me that he had researched the disease, and has a few other patients with GIST.

So, a bit of a reprieve.  Next scan in 6 more months.

The past 6 months were harder than the first 6.  I’m glad they are done.  I hope now I can think about it less, leading up to the next scan.  Try to be accepting of fate, accept what happens, and also hope for a little more time to do the things that I want to accomplish in life.

I know I can’t handle long term working as I do.  It’s all I can do to barely keep up.  So I will be retiring about as soon as allowed – 12 months from now.

Peace.

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.

December update

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Now about 9 months into “The New Normal”, living with cancer.

The fatigue situation is, possibly, worse.  Hard to say.  No, it’s worse.  A work day exhausts me beyond words.  When not going to work, I sleep about 12 hours.  It may be the draining effects of diarrhea, which I have many times, every day.  Not losing weight, so that’s good.  Image

The diarrhea has resulted in ’emergencies’ at the grocery store.  I have to set my groceries down, run to the restroom.  There have been times when I coughed, like last night, and….  not good.

I do have bursts of energy.  An hour, maybe too.  The mental effect is as much as the physical.

The flowers are from my yard last May.  I look at these, and other photos of gardening this year, to help me though the winter and look forward to next year.  I know the statistics are favorable to be around then.

Next scan is mid Jan.  We’ll see what it shows.

Last night I aspirated some of the Gleevec.  Intense, very bad, miserable, profound discomfort, coughing, exhausting.  I was tired when I came home from work, had supper, took the Gleevec, went to bed.  Big mistake.  Little stomach, meal too big, horizontal.  Stomach juices containing Gleevec refluxed, into airways.  The taste of Gleevec is beyond description, it’s so bad.  Metallic, bitter, burning, sharp, acrid, all combined.  It persists for hours.  Stimulated secretions into the lungs.  Coughed those up, Gleevec came with them, re-burning and re-burning the throat.  Tried drinking juice, using cough drops, Tums.  In the end it was tincture of time, slept upright in a chair.  Won’t make that mistake again.Oncology dept again set up appointment without telling me.  I wonder, what if airlines did that – tell people a day ahead, you are booked for a flight to St.Louis, which you had no idea you had booked.  What is wrong with those people?

So it’s OK.  Down in the dumps today.  I have times when I feel pretty happy.  Looking forward to Spring. Some anxiety about the scan, especially with the worsened fatigue, and chronic diarrhea.  But metastatic disease should cause weight loss, and that’s not happening.

We’ll see.

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.

0 china 1

The first week

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As time passes, the first weeks after diagnosis will become more blurry and subjective.  Which is probably for the better.  I did learn important things and about my health care system.

When I returned from the hospital, I tried to call to make appointment for the endoscopic biopsy.  The appointment person told me, I would have appointment in 4 weeks, to discuss the procedure by telephone, with the doctor who would do it.  Which wasn’t the doctor who I spoke to in the first place.

Some kind of lesson there.  Tell someone they have cancer.  A fast growing, lethal cancer.  But, it will be 4 weeks before you can talk with the doctor who does the biopsy, by phone, then potentially another month later they will do the biopsy.

I tried to stay calm.  There was no recourse as a patient.  Within the medical system, there is email – something I would not use for myself.  But I did.  As a primary care doctor, if someone wants to be seen for anything, no matter how minor, I’m expected to get them in within one or two days.  That has accelerated since then – now the patient is expected to be seen within one day or less.  But a cancer diagnosis, biopsy, potentially within 1 to 2 months?  Really?

Which is what I said to the first gastroenterologist.  “Really”.   With his email back to me, he was clearly pissed off about my response.  He said there was no intention to make me have the telephone appointment, and no intention to make me wait.  The plan was to do the endoscopic biopsy within one week.  A few more emails, and a few more calls, and that happened.  And much delicacy about the ego of the involved doctor, since he might be doing the procedure, and my angry response made him angry.

Fastforward, the biopsy went fine.  I didn’t remember a thing.  It was like being dead.

Before the biopsy, one gastroenterologist came by – a different one – and told me, if this cancer was GIST, which is what was suspected, Gleevec would make it melt like snow on a sunny day.  That imagery stayed with me.  Gleevec might be good, but it’s not that good, and I wonder why he said that, and how many people he says that to.

Next appointment, surgeon.  I liked him a lot, and still do.  He treated me and my partner like real beings, with respect and friendliness.  He treated me with dignity.  He reviewed the scan with me, colleague to colleague, we reviewed the biopsy result, GIST as suspected, and the probable surgery.  The surgery would be removal of the tumor, with margins, leaving the stomach intact.  There would be a liver surgeon, in case the tumor extended into the liver.  The lungs were clear, which was good – he stated GIST metasticizes to lungs, lungs, and lungs.  I remember, he said that 3 times.

We planned for the surgery.  I brought Ning with me to all appointments.  And to the workplace, where I told my boss what was happening, and 2 of my colleagues.  I would be given 6 to 8 weeks off for postoperative recovery.

That’s about it for the first week.  Next, surgery and surgical recovery.

Venting

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This post is just venting.

I feel like the oncology “team” is disjointed.  They keep reminding me of appointments that are not made and not indicated medically.   My surgeon clearly told me most mets are to the lungs.  He actually said, the mets go to the lungs, then to the lungs, and finally to the lungs.  When I asked the oncologist why they didn’t scan the lungs, he said mets go to the liver, not the lungs.  The surgeon said, gleevec should be taken lifelong.  The oncologist said, for 3 years.   Obviously, they don’t talk to each other.  My oncologist said the next supply  of Gleevec would be 90 days.  The pharmacist filled for 30 days.

The pharmacists in my health plan are charged with ensurin proper labs are done, by protocol.  I know that.   No one told me when to obtain my blood tests.  The first time, when I went to refill, the pharmacist refused because the test was not current.  I got the test and it was approved.

I asked for the fills to be sent to the clinic where I work.  The refills took several days to arrive there.  Not a problem, and i did not miss doses because I planned ahead.  However, I did have to contact the pharmacy multiple times.

This time, with the labor day weekend, I meant to get the blood test before the weekend.  But  was so tired after work, I forgot.  So I got the test after the weekend.  Due to the short turn around time, I had it filled at the oncology clinic, a 45 min drive from my office, where there would have been no drive.

I asked the pharmacist how to time it so I could get the blood test at the right time.  he said one day ahead.  I don’t want to miss doses – one day is not soon enough to get it to my office – but I replied it has taken longer already.  And that is without weekend or holiday.   I said, I didn’t think that was enough time – plus there can be weekend or holiday how about 10 days.  He said no, he would refuse it.  It had to be the day before.  ImageWhy?  Because that’s how he does it.  I told him, I am a doctor, you can use medical terminology with me, but I think there is no medical reason the test can’t be done a week ahead.  This is not chemotherapy, I’ve been stable on the Gleevec, the medication is taken chronically and changes are not dramatic – otherwise testing would be needed more frequently than just once monthly.  He then referred to me as “DOCTOR” – rude, abrupt, dismissing, sarcastic.  When do YOU want it, DOCTOR?  I say, how about 5 days ahead.  That way I don’t have to drive an hour an a half round trip, and take afternoon off from clinic.  I’m sorry you had to do that DOCTOR.  Then he asked, would you like a 90 day supply DOCTOR?  I said yes, that would make it go better.  (So if 90 days is OK, why isn’t 10 days or 7 days ahead for the blood test OK?  But I didn’t ask).  He slammed the pill bottle into a bag, pushed it at me, and walked away without another word.

Cancer patients deserve respect, compassion, clear directions, and the confidence that their medications will be managed in a straightforward way.  All patients deserve that.  None deserve rude staff with poor bedside manner and a chip on their shoulder.

If I treated patients that bad, which I would never do, I would be written up.

OK, venting done.  It’s just one day in for this cancer patient.  I’ll get over it.