The busy bee has no time for sorrow. (William Blake)

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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.

Leo

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Leo

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.

The Rest of Day Zero

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The ambulance ride was non-eventful.  Doped up on morphine and dilaudid, pain was tolerable as long as I did not move.  It was no longer the searing, down onto my knees pain of the initial presentation.  The abdomen was very tender to touch.

At the health plan hospital, the gastro-enterologist performed an endoscopy to look into the stomach.  That test did not reveal erosion of the tumor into the stomach lining.  However, the test was not diagnostic.  A surgery would be expected, but without a tissue diagnosis, it was not clear if surgery first, or chemotherapy then surgery, would be the best approach.  A tissue diagnosis, is analysis of tumor tissue to determine the type of cancer.  That would require a more complete endoscopy, with me under sedation.  The cancer was most likely GIST, but could be a different type of tumor, involving different treatment and different prognosis.

The hospitalist – an internist who works only in hospitals – was nice, but didn’t have much to contribute.  Seems like a nice job.

On return to the hospital room, the gastro-enterologist state, I could remain in the hospital another night, and have the endoscopy under sedation the next day, or I could go home.  The staff would call the next day to schedule the procedure, to be done within a week

The hospital staff was respectful and considerate, and treated my partner as the most important member of my family, which he is.  For that I was very grateful.

I opted to go home.  The next day, I was called by the scheduler, who told me I would be set up with a “telephone appointment” to discuss the procedure.  The telephone appointment would be scheduled in about 4 weeks.

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.

Day Zero.

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I’m not certain of the date.  Might have to change it if this is not correct.  I”m going to say, March 9th, of this year.  2013.  I think that’s right.

I was in the yard of our country place,  puttering.  A neighbor drove by and commented on the yard, and the nice day.  I agreed.

Suddenly, there was a gnawing abdominal pain.  I climbed carefully up the hillside on our property, to the house.  The pain increased in intensity.

I wondered if it was indigestion.  It seemed worse, then I wondered if i was about to have diarrhea.  I headed to the bathroom.  Nothing.  The intensity continued to climb.  Now, it was a searing, all encompassing pain.

My partner was at Costco.  I texted him, I was in trouble.  I thought, differential diagnosis.  Location, abdomen.  Mainly left upper quadrant.  Rapid onset.  Debilitating pain.  I was thinking, possibly, heart attack – likely, inferior (lower heart) myocardial infarction (again, heart attack), or abdominal aneurism.  I needed him back home.  I wanted him to drive me to the ER for my health plan.  But I was also thinking, I might die.  Either diagnosis at the top of my differential can do that.

He didn’t answer.  Later, it turned out that his I-phone was in his car, and he was in the store.  I didn’t want him to come home and find me dead, just because I was trying to save the health plan money by not calling ambulance.  This was a true emergency.  I called 911.  This property is new for us.  I didn’t remember the address.  I asked if they can use gps on cellphone to locate me.  No.  I crawled to the other room, found some junk mail, gave them the address.

EMTs arrived.  They assessed me. They were also thinking the same differential diagnoses.  They administered morphine, oxygen.  I don’t remember if there was aspirin or nitro, maybe.  My partner arrived.  He was, I know, stunned by the developments.  But he rallied, corralled the dogs, got the neighbor kids out of the street, and followed the ambulance to the hospital.

I asked for the hospital for my health plan.  EMTs insisted on the closer hospital, a catholic hospital where I worked for a while, part time, maybe 6 years ago.  I did not want to go there, partly because they are terrible at communicating with my health plan, and I was concerned about discrimination.  But I did not have a choice.

At the hospital, I got the feeling the ER doctor thought I was faking it.  Maybe a drug seeker?  He asked what I thought was happening.  I had told him, I am an Internist, and gave my differential.  By this time, the morphine had helped with the intensity of pain, but my abdomen continued to be very tender.  He asked, what did I think he should do.  I responded, rule out MI (make sure this wasn’t a heart attack), and get a CT Scan of the abdomen to rule out dissecting aortic aneurysm (basically, a rapidly expanding explosion of the aorta that can quickly cause death).

That’s what they did.  I was not having an MI.  He came into the room after the CT, and told me he had bad news.  He proceeded to tell me, as an ER doctor, he often has to tell people bad news, so he is good at it.  After some more beating around the bush, he said, well, there actually is a reason for the abdominal pain.  There is a tumor in the stomach lining, about 10 cm diameter.  The center of the tumor was necrotic – basically, dead – and the pain caused by bleeding into the tumor.  Most likely, GIST.  GIST means, “gastro intestinal stromal tumor” – an uncommon type of cancer that most doctors never see, and I had never seen in a patient up until now.  He then asked me, what do I want to do about it.

I was thinking, this guy is a jerk, many of the nurses in this hospital were mean, the catholic management of the hospital will not respect my partnership and my partner, or my wishes if it goes really bad, and I don’t want to be in this hospital.  A tumor of that size, infarcted, hemorrhaging, but no aneurysm and my vitals were stable.  I stated, I wanted transfer to the hospital in my health plan.  My health plan is all for that, and I knew they would not only approve but, given the chance, demand it.  Ultimately, they took me by ambulance, 30 miles, across state lines, to the “mother ship” hospital of my health plan.

More assessment was to follow that day and the days to come.  This is my memory of Day Zero.