CT Report

2 Comments

Soon coming up on 2 years.  CT report was negative.

Having read a lot more about prognosis, I was concerned.  There isn’t much reliable data out there.  From what I read, my expectation is about 50:50 for recurrence.  I’ve been having some chest wall pains (pleuritic pains) with breathing, and when I look at my belly, it’s kind of asymmetric.  So I wondered about those observations being a sign of cancer recurrence.

I had read that other patients ask their primary doctor for the CT results, for less of a wait.  That did not work for me.  I knew the report was there, but was not able to access it.  That added to the time and, to be honest, there is some suffering in that.  I did some calculating.  The prevalence of GIST seems to be around 6 to 12 out of one million people.  Some will have undetectable disease.  My health plan has 500,000 patients.  So, in the health plan, there are expected to be 3 to 6 patients with GIST.  Then, divide subtypes of GIST, gastric, intestinal, Exon 9, Exon 11 – maybe 2 or 3 with something analogous to my presentation.  I don’t expect that anyone be experienced, only don’t try to feign authority when there isn’t any – hence, former oncologist is now former oncologist.

New oncologist.   He was excellent.  I am very grateful.  I have to drive 40mile north, to Longview WA, instead of 20mile south, into Portland – but with Portland traffic being so bad, the amount of driving time is about the same.  My new oncologist is more open, more knowledgeable, more experienced, more empathetic, more respectful, more human.  He discussed the disease with me and made a great deal of sense.  He impressed me that he had researched the disease, and has a few other patients with GIST.

So, a bit of a reprieve.  Next scan in 6 more months.

The past 6 months were harder than the first 6.  I’m glad they are done.  I hope now I can think about it less, leading up to the next scan.  Try to be accepting of fate, accept what happens, and also hope for a little more time to do the things that I want to accomplish in life.

I know I can’t handle long term working as I do.  It’s all I can do to barely keep up.  So I will be retiring about as soon as allowed – 12 months from now.

Peace.

6 Month CT Scan

8 Comments

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.

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

The first week

2 Comments

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.

The benefits of cancer.

1 Comment

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.

The Rest of Day Zero

Leave a comment

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

Leave a comment

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.

Older Entries