CT Report


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.



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.



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.