The surgery.

2 Comments

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.

Advertisements

November 2013

4 Comments

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.

0 china 1