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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Nausea

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I think it’s mainly an effect of Gleevec.  Nausea is a constant companion.

I can’t recall, if there was nausea after the partial gastrectomy, but before the Gleevec.  I do recall, there was nausea prior to diagnosis.  If not nausea, then dyspepsia.  I recall experimenting with food and fluids, especially coffee, in the months leading up to Day Zero.  At my workplace, the water has a metallic, bitter flavor.  Coffee, made from that water, is equally bitter / metallic.  At home, we have a filtration system.  Water is fresh and clean.  So I brought my coffee in a big thermos, about 8 small cups daily.  Those are not the mega-Starbucks cups.  Small ones.Even so, I was noticing more dyspepsia / nausea recently.  The effects can not be separated from work stress.  Not complaining, but acknowledging.

I know work is stressful everywhere, and for many older workers, abuses are piled on even while they tire more easily, but also have more experience to contribute, and a dedicated work ethic.   And if forced out early, lose retirement plans.

In my work, there is continuous surveillance.  Not exaggerating.  Every action is recorded on computer.  We are told annually, every keystroke is subjected to monitoring.  Every day, we are told, by computer, what are the “deficiencies”, what are the “quality measures” for each interaction.  Additional work is sent, continuously, via computer.  Patients have the range of human traits, concentrated into brief (on the clock) but intense packets of interaction.  In those interactions, we must be:  On time.  Address all concerns.  Meet “quality measures” that we often have little control over.  “Quality measures” are based on demographics, may not apply, may be inappropriate for a particular patient or interaction, and the patient may simply refuse.  If a patient has 1 issue, or 25, we are expected to meet each in a way that leaves the patient feeling “very happy” on their survey, and not run late for the next.  And between patients, there are calls, prescriptions, emails, complaints, forms, and demands for overbooked appointments.  Despite a filled schedule with no empty spaces and expectation to meet every need.  On time.  And every action, at work, leads to more work to be done “after work” – to the point where the computer task-master is giving as much work “after hours” as the official, paid work.  Doctors burn out, and quit frequently.  At this point in my life, I don’t see an option, and if I quit, not only do I lose retirement, and life insurance benefit for my partner’s security – the fact is, the managers “win”.  All of which, I think, contributes to my symptom of nausea.  And diarrhea, and fatigue, but this post is about nausea.

Competition, manager career ambitions, and profit margins, mean my employer would not take kindly to these statements – I won’t name my employer, or provide demographic  – my age, name, state, etc – that might risk my position.   By not naming, there is less risk to my employer for bad publicity, and I suspect it’s true for all health plans.

Back to the nausea.   On the surface, everyone is required to remain calm, cheerful, polite, pleasant, positive.  But our bodies respond otherwise.   Looking around, I’m far from the only doctor to stress-eat.  Obesity is rampant.  I was less so, than many of those around me.  But there is also that gnawing, unpleasant, not-heart-burn (although that was also there), bad feeling sensation which is sometimes the urge to vomit, and sometimes just bad.

Before the GIST diagnosis, and partial gastrectomy, I had responded by eating bland foods, crackers/peanut butter/jelly, bring purified water from home.

After the diagnosis, then the surgery, I don’t recall how nauseated I was.  There was a lot of diarrhea at first.  I wasn’t tolerating much food.  I ate puddings, fruit, crackers.  And comfort foods, especially prepared potatoes.

After seeing my oncologist, Gleevec was started.   Without treatment, probability for short-term return of cancer is very high.  What that means, most likely, is the presence of microscopic cancer cells, elsewhere in my body.  Probably, lymph nodes and liver, but also potentially elsewhere.  The promise of Gleevec is that it stops those cells from growing.   There is some evidence that Gleevec kills some cancer cells.  But it does not eradicate them.  Eventually, some will mutate and grow, resistant to Gleevec.  The medication gives more time, but does not appear to be a complete cure.

Gleevec is one of the few existing treatments for GIST.   From what I’ve read so far, chemotherapy is useless.  Radiation therapy is useless.  There is one other medication – Sutent – that is alternative to Gleevec, and a few in research trials.

When it comes to side effects, Gleevec is tolerable.  At least for me.  Fatigue, nausea, diarrhea.  I’m not sure about new pains I’m experiencing.  I’ve discussed the fatigue.

After starting Gleevec, nausea returned, much more than before Day Zero.  It’s hard to sort out, but I do think it’s mainly Gleevec, and not the work related stresses.   Things add up, so it’s not just one issue.

Two weeks ago, I had a period of profound vomiting and diarrhea.  There has been a gastroenteritis epidemic, as evidenced by visits to my clinic.  That’s better now.  I may be more susceptible due to my changed anatomy, microscopic cancer cells, and Gleevec.  And also, lack of stomach acid to kill infections in the stomach.  Due to Protonix – different situation.

I’ve been working on ways to handle nausea and dyspepsia.  Stopping possible culprits, changing medication timing, adding foods or non-medication herbs/spices to soothe the stomach.  It seems to be helping.

Through trial and error, here are foods that definitely  worsen nausea – for me.

Coffee.  Damn.  I love coffee.  I do not love nausea.

Acidic fruit juices.  Damn.  I love orange and grapefruit juice.  Grape juice, some effect too.

Greasy or oily foods.

Too much of anything.  If I eat until I feel full, or try to complete a large portion, I feel not only over full, but nauseated.

Gleevec in the morning.  It seems better to take it in the pm.  To remember, and take the same time every day, I’ve added alarm timer to both i-phone and i-pad.

Then there are things that reduce nausea.  The nursing mantra for gastroenteritis is “Bananas Rice Applesauce Toast”  Those foods are soothing because of pectin content, lack of irritants, and provide easy carbohydrates.

I take the Gleevec with applesauce.   The reasoning is the pectin in applesauce lines the stomach wall (what I have left of a stomach), and makes for more gradual release of medication.

Cooked fruit – especially pears and peaches.  In light syrup or juice.  Not heavy syrup.  Stay away from citrus.

Teas.  Again, through trial and error, I’ve found some teas that really do settle my stomach, and help with nausea.  Brands  and types –

Constant Comment Tea

Tazo Chai

Safeway Chai

I think the common thread is spice added to the teas.  Cinnamon, clove, ginger.

Mint teas.  Technically, tisanes.  涼茶? liáng chá? Tea made from herbs, not tea leaves.  Peppermint and spearmint are both good.  Various brands.

I have no illusions about naturopathy or herbal medication.   However, we all know foods and smells that cause nausea – even to the point of vomiting.  And there are also flavors and fragrances that can soothe nausea.  In the case of mint, it’s the menthol.  For cloves, it’s eugenol.  For Cinnamon, it’s cinnamaldehyde.  For ginger, it’s a combination of volatile oils.

Honey also helps.  I think it’s better than actual sugar.  I have honey that was given to me, raw and untreated, from wildflowers.  It has more flavor compared to processed honey.

I have not taken a nausea medication.  That would worsen fatigue, which is already significant.

Ning has also been making grain milks, using a soy milk machine.  He adds ginger.  That is helping too.  Ning helps in more ways than I can describe.

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.