6 Month CT Scan


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


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 first week


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.

Six Months after Day Zero

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File:Arbutus menziesii 5822.JPG

I will commemorate by planting a tree.  There will be two trees.  One is a Madrone.  Arbutis menziesii.  That is for my birthday.  Madrone is native to the Pacific Northwest.  They are said to be difficult to transplant and settle in.  One reference said, 9 out of 10 die.  I will do my best to nurture it.  (Pic from commons.wikimedia.org)

File:Sourwood leaves and flowers.jpg

The second is Oxydendrum arboreum.  This one is my 6-months-after-day-zero tree.  Sourwood tree.  Brilliant fall color, flaming red.  Nectar from early summer flowers make a famous special varietal honey, one of several honeys that apiarists claim as the best of all.  Sourwood may be difficult to establish too.     (pic form commons.wikimedia.org)

It might take a while to get them into the ground.  I fatigue so easily.  I will ask for Ning to help.

The benefits of cancer.

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I’m sure  this is unexpected.  It is unexpected for me.

There is the downside of cancer, as anyone would expect.  The first thoughts are about mortality, then there’s surgery, medication, tests, contact with annoying and ham handed medical staff.  There is grief over loss of the planned tomorrow.

There are some benefits.  Some trivial, some much deeper.  This list is not comprehensive.  These are my thoughts, now.  Looking at the positive is not silly, not unrealistic, not strangely and inappropriately optimistic.  Seeing benefits from having cancer, does not trivialize the struggle.  Instead, looking only at the negative, trivializes my experience and emotion.

First, I have a deeper understanding and appreciation  of my relationships with others.  Ning has been by my side throughout.  I am so grateful.  Ning is my family.  Having cancer, I appreciate him more.  I always have, but now it’s sweeter.

Relationships with my primary community surrogate family  have also been sweeter.  At work – my main activity and community – the few who I have told have let me continue to be myself.  Not a poor guy with cancer.  Limitations are respected, and when I’m worn out  – even if I’m not getting a break – I get a little understanding.  Before, that wasn’t the case.

Having cancer forces me to acknowledge the limitation of life.  If work is too hard, I’ll quit.  Because of that, I know I am there because I decide.  Not because of someone else.   This gives me strength.  I appreciate that.

Having cancer forces me to remember, we only live in today.  We might live for tomorrow – a tomorrow that may never come.  We might live from yesterday.  A time that is gone.  But today, we only live in today.  I have a greater appreciation for the “now”.

There are less philosophical benefits.

I think, every day, someone will comment on my weight loss.  Having lost 35 pounds, it’s easily apparent.  The compliments are frequent.  Kind of funny.  People ask, what’s my secret to weight loss.  Inside I think about saying, “cancer”.  My private, dark joke.  It’s funny.

If I eat some ice cream or potato chips, I don’t feel guilty.  I am still working on trying to maintain weight.  An treat isn’t going to hurt me.

I’ve learned to appreciate new foods and flavors.  Teas, cinnamon, clove, citrus peel oil, honeys, ginger.  Ning, again, has been contributing to this exploration.  It’s nice.

For similar reasons, I’m more aware of some awesome sights, sounds, smells, and flavors.  Gurus of semi-buddhist psychospeak might call that “mindfulness”.  I’m too analytical to call it that, but there it is.

Again, due to the weight loss, I’ve started sorting through old clothes.  It’s fun.  I had saved some clothes, several years ago, after gaining weight and they didn’t fit.  Now, I look at an item, and remember “I liked that” and I get to wear it again.  I enjoy that experience.  It’s like reliving a good experience from the past.  Going to my own estate sale, and buying from myself.

I’ve developed a greater appreciation for remote, internet friendships, too.  Including a wonderful lady, who is also going through chemotherapy and radiation therapy.  I feel closer to her.

I’m sure other positives will surface.  These are my thoughts, today.


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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.

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