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.

 

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.

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The Rest of Day Zero

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The ambulance ride was non-eventful.  Doped up on morphine and dilaudid, pain was tolerable as long as I did not move.  It was no longer the searing, down onto my knees pain of the initial presentation.  The abdomen was very tender to touch.

At the health plan hospital, the gastro-enterologist performed an endoscopy to look into the stomach.  That test did not reveal erosion of the tumor into the stomach lining.  However, the test was not diagnostic.  A surgery would be expected, but without a tissue diagnosis, it was not clear if surgery first, or chemotherapy then surgery, would be the best approach.  A tissue diagnosis, is analysis of tumor tissue to determine the type of cancer.  That would require a more complete endoscopy, with me under sedation.  The cancer was most likely GIST, but could be a different type of tumor, involving different treatment and different prognosis.

The hospitalist – an internist who works only in hospitals – was nice, but didn’t have much to contribute.  Seems like a nice job.

On return to the hospital room, the gastro-enterologist state, I could remain in the hospital another night, and have the endoscopy under sedation the next day, or I could go home.  The staff would call the next day to schedule the procedure, to be done within a week

The hospital staff was respectful and considerate, and treated my partner as the most important member of my family, which he is.  For that I was very grateful.

I opted to go home.  The next day, I was called by the scheduler, who told me I would be set up with a “telephone appointment” to discuss the procedure.  The telephone appointment would be scheduled in about 4 weeks.

Fatigue

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There are gains and losses with cancer.  I will ponder the gains later.  I know that’s unexpected.

The losses make more sense.  I took pride in my health, which I tried to maintain.  That’s hard in an obsessively hard working career, when nothing is enough and there is always the choice of, what do I not do as well as I truly want to do?  Even so, I always tried to eat well, do something physical, and avoid some of the worst habits.

With cancer, in this case a random mutation not thought related to infections, bad habits, risky behaviors, or even known genetic risks, the idea of “being healthy” is gone.

I also thought of myself as able to work harder, accomplish more, do more of what had to be done, compared to anyone else I knew.  I looked at being a hard worker as insurance against disasters.  And as my duty.

Now, the fatigue is omnipresent.  Before the cancer diagnosis, I thought it was aging.  I don’t mind that.  Everyone gets older.  What I didn’t know was, there was a cancer sapping energy too.

With the big tumor gone, and a few months of healing from surgery, I have to look at fatigue as part of the new status quo.  Or, in current words, the “new normal”.

Is it the presence of microscopic cancers? Residual products of the original tumor? Maybe, some malnourishment.  I’ve lost 30 pounds, mostly fat but some muscle mass.  With frequent diarrhea, and early satiety – feeling full with smaller portions, due to removal of half of my stomach – there may be some malabsorption.    Then there’s the Gleevec, with fatigue as a major side effect.

My oncologist suggested depression, as well as the Gleevec.  It’s true, with cancer there is grieving, but I don’t think this fatigue is due to depression.

I don’t mind the fatigue, too much.  It forces me to stop trying to always accomplish things.  But there are challenges.

I’m best in the am.  In the afternoon, I crash.  Usually at mid afternoon.  That makes work more difficult.  My schedule now is, full day Monday, off Tuesday.  Half days wed and thurs.  Then full day Friday.  That gives me Tues and Sat to recover from the full days.  The half days were am and pm, now both am, which should help.

Being “off” is a loaded term.   “At work” means seeing patients, continuous, with responses to calls, faxes, pharmacy and nursing, interspersed.  There are no breaks.  “Not at work” leaves follow up of tests, documentation, more pharmacy and email.  “Off work” is as much work as “at work”, but with fewer interruptions, less multitasking, and more self paced.

I’ve been working on how to do that on-line off-site work, better.  It was a challenge before cancer.  Many of my colleagues have quit over it.

I can’t quit.  My health insurance, including the Gleevec (wikipedia states $60,000 per year) comes via my work.  So does life insurance.  I’m not willing to accept, that I can’t provide that benefit for my partner to carry on when I die.  Work gives purpose to my life.  I value many of the people who I work with, and the day to day human contact.  Without that, I think I would become very depressed.

My oncologist wanted me to stop the Gleevec, temporarily.  I am not willing to do that.  Frankly, I think it’s unwise.  Gleevec appears to work by stopping growth of cancer cells.  Allowing cancer cells to grow, increases the chances of them becoming resistant to the medication.  The limited alternatives to Gleevec, such as Sutent, do not appear easier to take compared to Gleevec.  I want to save that for if/when my cancer mutates to resist the Gleevec.  Today I emailed my oncologist,  asking to continue Gleevec without a “drug holiday.”

So, I’ll continue to work on pacing myself.  I’ve made some dietary adjustments to help with diarrhea and nausea – separate post – and that might help a little with fatigue.  The schedule adjustment should also help.

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.