Haven’t posted in a while.  Been sick, and working hard too.

The next scan is still 2 months away.  The more I read about GIST, the more I think about it.   It’s been on my mind more than I can say.   It would probably be best if I didn’t read more.  One item I read, is I am nearing the point where about 1/2 of people with my mutation have a recurrence.  I don’t know if that is accurate – maybe not-  and short of paying on my own to go to a GIST specialty center, with no guarantee they will be more humane or have a better answer, the best I can do is accept what is, is.

After the last visit with my first oncologist, I decided to make a change.  The reasons were-

I don’t think he knows much about GIST.

He had nothing to offer regarding nausea and diarrhea.

When we discussed the fatigue, his recommendation was to stop the Gleevec temporarily.  I told him that interrupting the Gleevec could give microscopic GIST cells a chance to grow and mutate, and his reply was “It doesn’t work like that”.  He had no evidence to offer, just the statement.

He wasn’t even remotely pro-active when it came to vaccinations, which can make a big difference in potential illnesses and quality of life.

When we last met, all he could say was “We stop the Gleevec at 3 years.”  That may be right, or not, but the only thing he had to say was “That’s how it works.” with no evidence to offer, just the statement.  It’s really all he had to say.

Reading on my own, there are some big differences between the Exon 11 disease, and the Exon 9 disease.  Duration of treatment might not be the same.  Effectiveness of alternative treatments varies a lot, between those mutations.  I get the feeling that last oncologist was uninterested in these nuances, and may well think GIST is a single disease – which it isn’t.

It will be 2 months before I meet the new oncologist.  He came recommended by a colleague who I respect.  I hope it goes better.

The on line GIST support group list-serve has made me realize I am not alone in this.  I don’t post there much at all, but reading other posts gives a sense of community in this disease and all of the things that go along with it.  Gistsupport.org.  Reading the posts makes me know how fortunate I am, and gives me some thoughts it will be OK for a while.

I’ve now mostly recovered from pneumonia.  That came on in September.  Another reason to fire the last oncologist – there was no recommendation, or mention, of needing a pneumovax, even though either the disease, or Gleevec, or both, reduce immunity, increase the risk for infectious illness.  That includes potentially severe ones, such as pneumonia. This episode really took me down.  With antibiotic, and rest, I’m improved.

With Ning in Athens, Acropolis in background

With Ning in Athens, Acropolis in background.

By coincidence, we had a 2-week cruise vacation planned, about 1 week after finishing antibiotic.  Almost didn’t go – I was really exhausted.  But the flight is all sitting, and much of it sleeping.  Ning did all of the work, arranging the cruise.  On the ship, I also spent a LOT of time sleeping. There were excursions.  I managed to go on several. It was a great bucket list cruise – stops in Turkey, Roman ruins, Greek ruins, temples, cathedrals, and mosques. Ning was very patient, and he let me say when I had enough, and needed to stop.  Which was often.

In Istanbul at the Hagia Sophia.  Oct 2014

In Istanbul at the Hagia Sophia. Oct 2014

I started thinking about other infections.  I would be due for a shingles vaccine too – but it can’t be given with Gleevec.  Should have been given prior to starting it.

To be honest, I am not in as good shape, physical or mental, as I was before the pneumonia.  Strength is ok.  Stamina is very poor.  I bottom out at about 2 pm.  Mentally, I’m as sharp, but no mental stamina either – by the end of the day, I can barely drive the 20 minuted home.  Diarrhea has returned.   I’m taking Imodium now, when it occurs, which helps 50%.

Sorry this post is is more of a downer.  Work has been tough.  The demands are more.  People get used to seeing you  The cancer isn’t all over your face, so they think you are OK.  The expectation is pretty much the same as for someone healthy.  Not just pretty much the same – I still don’t take all of my earned sick leave, and healthier people do.  They talked me into applying for FMLA – then management were assholes about it, with demands that are not there for general sick leave.  Other than the pneumonia, I’ve only taken off 2 work days, and appointments have been during off times.  The pneumonia was – I think – 4 work days off.  But people sort of thought I was going to drop dead at the office.

Istanbul, from the Bosphorus

Istanbul, from the Bosphorus.

But – I’m immensely fortunate to have someone on this journey with me.  I’m incredibly lucky to have contracted this disease after treatments, however imperfect, have been developed.  I’m really damn privileged to have health insurance, even though I have worked my ass off for many years, because a lot of other hard working people don’t have health insurance, or it’s inadequate to cover such an expensive medication.  The same for having resources, and the ability to take time off and explore, and heal.   All in all, I’m very lucky.

I’m getting by.  One day at a time.  Accept what I can, don’t be too attached to transitory things, including life itself.  Continue to make arrangements so that if I’m not around that long, things will be OK.  And don’t burn bridges, in case this disease never returns.   Which would be amazing, but possible.

Advertisements