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.

 

Narcissus poeticus

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Narcissus poeticus

Awaiting spring. Last year’s long anticipated Spring gave way to hospitals, surgeons, doctors, and medications. This year I hope for more peace, more routine, and happier. At least, the intensity has given way to resignation. The narcissus leaves are poking through the ground, determined to weather the next freeze.

Image via commons.wikimedia.org

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.

The surgery.

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Now that it is well behind me, here are my recollections about the surgery, my experiences, how it went, and how it affected me.

Leading up to the surgery, endoscopic biopsy was needed. I was told, it would be arranged the day I left the hospital, to occur that week. The appointment person informed me I would, instead, have a “telephone appointment” with a different gastroenterologist, in a few weeks. Not good. I contacted the first gastroenterologist, expressed how I thought…. then in multiple subsequent communications, repeatedly, apologized. Even though I was the patient, and if there should be any expectation, it is to be treated with diligence, dignity, and respect.

The scheduling dysfunction is a recurring theme in my experience as a patient, and on the other side as a doctor.  I wish the health plan would get its act together.  Doctor, and other health care provider, egos are another recurring theme.  But I am so grateful for the good ones.

The endoscopic biopsy went smoothly. I remembered none of it. Anesthesia is as much like being dead as you can be, without being dead. Eerie. Better than waking up during the procedure.

The biopsy showed GIST.

Surgery was arranged. I got the time off from work. My patients would be told I would be away for 8 weeks or so.

Again, anesthesia was effective. I had no memory after the IV was inserted. Complete blank. A piece of death. Next memory was RN telling me to breathe, in the hospital room after.

The procedure was more extensive than originally planned. It was a procedure called a Billroth II. A large portion of the stomach was removed, and a new opening made connecting the remainder of the stomach to part of the small intestine, further downstream. This was needed due to the large size of the tumor. A slice of liver was also taken. No large lymph nodes or metastatic tumors were seen.

It was hard to find a public domain illustration of a Billroth II.  Here it is, In limited detail and in Italian, from wikipedia.

 

The surgeon had a great bedside manner. Cheerful, respectful, confidant, friendly, professional, exuding competence. He was great.

What followed was day by day recovery in the hospital, for about 5 or 6 days. The nurse got me up to walk within hours. Necessary, difficult. They were very diligent about pain control. I did not want more pain medication than necessary. It caused weird dreams, foggy brain, uncomfortable constipation, unable to urinate. I prefer to use as little as needed to keep pain bearable.  Nurses frequently prompted me to take pain medication, and use the pain medication pump.  I avoided it as much as I could.

They hospital and staff were respectful and honored my relationship with my partner. They allowed him to sleep in the hospital room. I can’t express what a difference that made.  I was worried about that.

When I was sufficiently better, to eat a little, have BM, urinate, they let me go home. Uneventful. Staff was nice and caring. I appreciate them very much.

Glad to be home. Took walks each day. Did not log onto work computer. Brain to fuzzy. But insisted on returning to work several weeks ahead of projected. And that was that.

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.

0 china 1

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.

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