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.

Six Months after Day Zero

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File:Arbutus menziesii 5822.JPG

I will commemorate by planting a tree.  There will be two trees.  One is a Madrone.  Arbutis menziesii.  That is for my birthday.  Madrone is native to the Pacific Northwest.  They are said to be difficult to transplant and settle in.  One reference said, 9 out of 10 die.  I will do my best to nurture it.  (Pic from commons.wikimedia.org)

File:Sourwood leaves and flowers.jpg

The second is Oxydendrum arboreum.  This one is my 6-months-after-day-zero tree.  Sourwood tree.  Brilliant fall color, flaming red.  Nectar from early summer flowers make a famous special varietal honey, one of several honeys that apiarists claim as the best of all.  Sourwood may be difficult to establish too.     (pic form commons.wikimedia.org)

It might take a while to get them into the ground.  I fatigue so easily.  I will ask for Ning to help.

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.