Always on my mind

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Haven’t posted in a while.  Been sick, and working hard too.

The next scan is still 2 months away.  The more I read about GIST, the more I think about it.   It’s been on my mind more than I can say.   It would probably be best if I didn’t read more.  One item I read, is I am nearing the point where about 1/2 of people with my mutation have a recurrence.  I don’t know if that is accurate – maybe not-  and short of paying on my own to go to a GIST specialty center, with no guarantee they will be more humane or have a better answer, the best I can do is accept what is, is.

After the last visit with my first oncologist, I decided to make a change.  The reasons were-

I don’t think he knows much about GIST.

He had nothing to offer regarding nausea and diarrhea.

When we discussed the fatigue, his recommendation was to stop the Gleevec temporarily.  I told him that interrupting the Gleevec could give microscopic GIST cells a chance to grow and mutate, and his reply was “It doesn’t work like that”.  He had no evidence to offer, just the statement.

He wasn’t even remotely pro-active when it came to vaccinations, which can make a big difference in potential illnesses and quality of life.

When we last met, all he could say was “We stop the Gleevec at 3 years.”  That may be right, or not, but the only thing he had to say was “That’s how it works.” with no evidence to offer, just the statement.  It’s really all he had to say.

Reading on my own, there are some big differences between the Exon 11 disease, and the Exon 9 disease.  Duration of treatment might not be the same.  Effectiveness of alternative treatments varies a lot, between those mutations.  I get the feeling that last oncologist was uninterested in these nuances, and may well think GIST is a single disease – which it isn’t.

It will be 2 months before I meet the new oncologist.  He came recommended by a colleague who I respect.  I hope it goes better.

The on line GIST support group list-serve has made me realize I am not alone in this.  I don’t post there much at all, but reading other posts gives a sense of community in this disease and all of the things that go along with it.  Gistsupport.org.  Reading the posts makes me know how fortunate I am, and gives me some thoughts it will be OK for a while.

I’ve now mostly recovered from pneumonia.  That came on in September.  Another reason to fire the last oncologist – there was no recommendation, or mention, of needing a pneumovax, even though either the disease, or Gleevec, or both, reduce immunity, increase the risk for infectious illness.  That includes potentially severe ones, such as pneumonia. This episode really took me down.  With antibiotic, and rest, I’m improved.

With Ning in Athens, Acropolis in background

With Ning in Athens, Acropolis in background.

By coincidence, we had a 2-week cruise vacation planned, about 1 week after finishing antibiotic.  Almost didn’t go – I was really exhausted.  But the flight is all sitting, and much of it sleeping.  Ning did all of the work, arranging the cruise.  On the ship, I also spent a LOT of time sleeping. There were excursions.  I managed to go on several. It was a great bucket list cruise – stops in Turkey, Roman ruins, Greek ruins, temples, cathedrals, and mosques. Ning was very patient, and he let me say when I had enough, and needed to stop.  Which was often.

In Istanbul at the Hagia Sophia.  Oct 2014

In Istanbul at the Hagia Sophia. Oct 2014

I started thinking about other infections.  I would be due for a shingles vaccine too – but it can’t be given with Gleevec.  Should have been given prior to starting it.

To be honest, I am not in as good shape, physical or mental, as I was before the pneumonia.  Strength is ok.  Stamina is very poor.  I bottom out at about 2 pm.  Mentally, I’m as sharp, but no mental stamina either – by the end of the day, I can barely drive the 20 minuted home.  Diarrhea has returned.   I’m taking Imodium now, when it occurs, which helps 50%.

Sorry this post is is more of a downer.  Work has been tough.  The demands are more.  People get used to seeing you  The cancer isn’t all over your face, so they think you are OK.  The expectation is pretty much the same as for someone healthy.  Not just pretty much the same – I still don’t take all of my earned sick leave, and healthier people do.  They talked me into applying for FMLA – then management were assholes about it, with demands that are not there for general sick leave.  Other than the pneumonia, I’ve only taken off 2 work days, and appointments have been during off times.  The pneumonia was – I think – 4 work days off.  But people sort of thought I was going to drop dead at the office.

Istanbul, from the Bosphorus

Istanbul, from the Bosphorus.

But – I’m immensely fortunate to have someone on this journey with me.  I’m incredibly lucky to have contracted this disease after treatments, however imperfect, have been developed.  I’m really damn privileged to have health insurance, even though I have worked my ass off for many years, because a lot of other hard working people don’t have health insurance, or it’s inadequate to cover such an expensive medication.  The same for having resources, and the ability to take time off and explore, and heal.   All in all, I’m very lucky.

I’m getting by.  One day at a time.  Accept what I can, don’t be too attached to transitory things, including life itself.  Continue to make arrangements so that if I’m not around that long, things will be OK.  And don’t burn bridges, in case this disease never returns.   Which would be amazing, but possible.

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.

Image

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.

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