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.

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.