14 Months and counting.

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So far, so good.  I’ve thought a number of times about what to say at this point.  It’s all become pretty ordinary now.  Weight is stable, not losing, not gaining.  Energy level is stable.  Not great, nowhere close to what it used to be, but it’s the new normal.  Fatigue is a constant companion.  I have bursts of energy, mainly in am.  By about 2 pm, I’m bushed.   By 5pm, my brain is in mush-mode, I can’t think,  and efforts to do so make me want to cry.  The brain fatigue is often worse than the physical fatigue.

 

The main gastrointestinal symptom is diarrhea.  I’ve learned to manage, through trial and error.  Nausea is pretty much gone.  As long as I eat many small meals – snacks – and not fill my stomach, diarrhea is much less common.  I now know the locations of restrooms at most stores, and the back-up and back-up back-up restrooms at work, for those occasions when I err, or my body wants to surprise me.

The perfect meal/snack is a small egg burrito, using a flour or corn/flour tortilla, 1/3 of  a scrambled egg, a little salsa, and a little shredded cheddar.  Eating several of those through the morning, not trying to be full, diarrhea is much less common.  Tea – usually Tazo or other brand of chai tea, which contains cinnamon, ginger, clove, and adding a little bit of unpasteurized honey – more flavor with less sugar – several cups a day replacing most of my coffee – is really soothing.  I limit acid foods but do have some OJ, smaller amount daily than in the past.  High sugar – cake, pie, cookie – brings on the dumping syndrome.  Big meal does the same.  High fat does the same.  This forces me to eat healthy even when stressed.

I take the Gleevec in the pm.  Since I always carry an I-pad, I use the alarm on the device to remind me.  It’s hard to remember to take pills in the pm, but this way I never fail.  The good thing about using I-pad is I can set the alarm to any downloaded music.  I use thunderstorms, or rain forest sounds, or waterfalls, so the reminder is soothing, not jarring.   It’s hard to wake up in the am, much harder than before cancer.  So I use the same alarm system as for the pills.

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Photo is at the Holland Bulb farms last month, not far from my town.

I don’t know that B12 supplement is helping me.  I need to check the level.  No one – surgery, oncology, or primary care, caught that a Billroth-II probably guarantees a B12 deficiency.  I should have known better, myself.  If it was one of my patients, instead of me, I think I would have known.  Same as gastric bypass patients.  I use the sub-lingual B12, 2,000 mcg daily.  There are studies stating sublingual is not better than swallowed oral tab.  However, that is with intact stomach.  Which I don’t have.  Sublingual is just as easy, and can be bought inexpensively by waiting for Safeway or Kroger 2 for 1 coupon days.

The health plan is missing the boat on the cost of Gleevec.  It’s about $21,000 for a 3 month supply.  That’s $88,000 a year.   If they would send me to Canada with an Rx, it costs $11,000 for a 3 month supply, or $1,600 for the generic.   via website Canadadrugs.com.   Imatinib 400mg (generic equivalent to Gleevec)  Manufactured by:  Teva Pharma  This product is offered for sale by Canada Drugs LP of Canada USD – $17.74 USD/tablet.  My   math may be off, but I think it’s a massive savings over buying it here.  That’s $7,000 a year instead of $88,000 a year.

As it is, my oncologist seems to think I’d be happy to stop it for a while and see if fatigue is better.   While my surgical oncologist tells me, if it was him, he would take it for life.  Maybe there is a regulation that prevents this, I don’t know.  But when the time comes that the health plan cuts me off, I think I’ll look into the options.

But for now, the status quo is tolerable.  I continue to work.  The work schedule can be grueling, but I rest the next day or weekend.  It could be much worse.

I weigh about 30# less than before cancer.  People compliment me, “You’re so healthy!  How did you do it?”.  I usually just say I was sick.  Inside, I want to say “Cancer”.  But I don’t.

With surgery and medication, I have a reprieve.  I don’t know for how long.  One day at a time.

The new normal is OK.

 

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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.