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.

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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.

Day Zero.

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I’m not certain of the date.  Might have to change it if this is not correct.  I”m going to say, March 9th, of this year.  2013.  I think that’s right.

I was in the yard of our country place,  puttering.  A neighbor drove by and commented on the yard, and the nice day.  I agreed.

Suddenly, there was a gnawing abdominal pain.  I climbed carefully up the hillside on our property, to the house.  The pain increased in intensity.

I wondered if it was indigestion.  It seemed worse, then I wondered if i was about to have diarrhea.  I headed to the bathroom.  Nothing.  The intensity continued to climb.  Now, it was a searing, all encompassing pain.

My partner was at Costco.  I texted him, I was in trouble.  I thought, differential diagnosis.  Location, abdomen.  Mainly left upper quadrant.  Rapid onset.  Debilitating pain.  I was thinking, possibly, heart attack – likely, inferior (lower heart) myocardial infarction (again, heart attack), or abdominal aneurism.  I needed him back home.  I wanted him to drive me to the ER for my health plan.  But I was also thinking, I might die.  Either diagnosis at the top of my differential can do that.

He didn’t answer.  Later, it turned out that his I-phone was in his car, and he was in the store.  I didn’t want him to come home and find me dead, just because I was trying to save the health plan money by not calling ambulance.  This was a true emergency.  I called 911.  This property is new for us.  I didn’t remember the address.  I asked if they can use gps on cellphone to locate me.  No.  I crawled to the other room, found some junk mail, gave them the address.

EMTs arrived.  They assessed me. They were also thinking the same differential diagnoses.  They administered morphine, oxygen.  I don’t remember if there was aspirin or nitro, maybe.  My partner arrived.  He was, I know, stunned by the developments.  But he rallied, corralled the dogs, got the neighbor kids out of the street, and followed the ambulance to the hospital.

I asked for the hospital for my health plan.  EMTs insisted on the closer hospital, a catholic hospital where I worked for a while, part time, maybe 6 years ago.  I did not want to go there, partly because they are terrible at communicating with my health plan, and I was concerned about discrimination.  But I did not have a choice.

At the hospital, I got the feeling the ER doctor thought I was faking it.  Maybe a drug seeker?  He asked what I thought was happening.  I had told him, I am an Internist, and gave my differential.  By this time, the morphine had helped with the intensity of pain, but my abdomen continued to be very tender.  He asked, what did I think he should do.  I responded, rule out MI (make sure this wasn’t a heart attack), and get a CT Scan of the abdomen to rule out dissecting aortic aneurysm (basically, a rapidly expanding explosion of the aorta that can quickly cause death).

That’s what they did.  I was not having an MI.  He came into the room after the CT, and told me he had bad news.  He proceeded to tell me, as an ER doctor, he often has to tell people bad news, so he is good at it.  After some more beating around the bush, he said, well, there actually is a reason for the abdominal pain.  There is a tumor in the stomach lining, about 10 cm diameter.  The center of the tumor was necrotic – basically, dead – and the pain caused by bleeding into the tumor.  Most likely, GIST.  GIST means, “gastro intestinal stromal tumor” – an uncommon type of cancer that most doctors never see, and I had never seen in a patient up until now.  He then asked me, what do I want to do about it.

I was thinking, this guy is a jerk, many of the nurses in this hospital were mean, the catholic management of the hospital will not respect my partnership and my partner, or my wishes if it goes really bad, and I don’t want to be in this hospital.  A tumor of that size, infarcted, hemorrhaging, but no aneurysm and my vitals were stable.  I stated, I wanted transfer to the hospital in my health plan.  My health plan is all for that, and I knew they would not only approve but, given the chance, demand it.  Ultimately, they took me by ambulance, 30 miles, across state lines, to the “mother ship” hospital of my health plan.

More assessment was to follow that day and the days to come.  This is my memory of Day Zero.