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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The first week

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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.

Venting

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This post is just venting.

I feel like the oncology “team” is disjointed.  They keep reminding me of appointments that are not made and not indicated medically.   My surgeon clearly told me most mets are to the lungs.  He actually said, the mets go to the lungs, then to the lungs, and finally to the lungs.  When I asked the oncologist why they didn’t scan the lungs, he said mets go to the liver, not the lungs.  The surgeon said, gleevec should be taken lifelong.  The oncologist said, for 3 years.   Obviously, they don’t talk to each other.  My oncologist said the next supply  of Gleevec would be 90 days.  The pharmacist filled for 30 days.

The pharmacists in my health plan are charged with ensurin proper labs are done, by protocol.  I know that.   No one told me when to obtain my blood tests.  The first time, when I went to refill, the pharmacist refused because the test was not current.  I got the test and it was approved.

I asked for the fills to be sent to the clinic where I work.  The refills took several days to arrive there.  Not a problem, and i did not miss doses because I planned ahead.  However, I did have to contact the pharmacy multiple times.

This time, with the labor day weekend, I meant to get the blood test before the weekend.  But  was so tired after work, I forgot.  So I got the test after the weekend.  Due to the short turn around time, I had it filled at the oncology clinic, a 45 min drive from my office, where there would have been no drive.

I asked the pharmacist how to time it so I could get the blood test at the right time.  he said one day ahead.  I don’t want to miss doses – one day is not soon enough to get it to my office – but I replied it has taken longer already.  And that is without weekend or holiday.   I said, I didn’t think that was enough time – plus there can be weekend or holiday how about 10 days.  He said no, he would refuse it.  It had to be the day before.  ImageWhy?  Because that’s how he does it.  I told him, I am a doctor, you can use medical terminology with me, but I think there is no medical reason the test can’t be done a week ahead.  This is not chemotherapy, I’ve been stable on the Gleevec, the medication is taken chronically and changes are not dramatic – otherwise testing would be needed more frequently than just once monthly.  He then referred to me as “DOCTOR” – rude, abrupt, dismissing, sarcastic.  When do YOU want it, DOCTOR?  I say, how about 5 days ahead.  That way I don’t have to drive an hour an a half round trip, and take afternoon off from clinic.  I’m sorry you had to do that DOCTOR.  Then he asked, would you like a 90 day supply DOCTOR?  I said yes, that would make it go better.  (So if 90 days is OK, why isn’t 10 days or 7 days ahead for the blood test OK?  But I didn’t ask).  He slammed the pill bottle into a bag, pushed it at me, and walked away without another word.

Cancer patients deserve respect, compassion, clear directions, and the confidence that their medications will be managed in a straightforward way.  All patients deserve that.  None deserve rude staff with poor bedside manner and a chip on their shoulder.

If I treated patients that bad, which I would never do, I would be written up.

OK, venting done.  It’s just one day in for this cancer patient.  I’ll get over it.

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.

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