A New Battle

I intend this blog to be a recounting of my adventures in retirement, and random observations about my universe that others might find interesting.  I don’t want it to become a recounting of my medical travails – I get enough of that sitting around beers at O’Malley’s Irish pub with my like-wise retired friends.  But, I do feel it desirable to share with my blog readers my current condition, since it will probably alter my life significantly going forward.  Besides, I am too lazy to recount the story to each and everyone of my friends and acquaintances when the subject inevitably arises – so hopefully most of them will read this.  I will be giving you the Reader’s Digest addition.  I am happy to recount the gritty details to anyone interested, but you might have to show up to O’Malley’s for that.

Upon my return from Nepal, having fully recovered from my bout with altitude sickness in Nepal, I awoke up one morning with moderate to severe stomach pain.  I endured it for the entire day before giving in and driving myself to the hospital.  I spent the late

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Well, I had to have a picture….These are what a typical neuroendocrine tumor looks like on a cellular level. 

night and early morning hours undergoing a battery of blood tests and scans.  A CT scan revealed a soft-tissue mass on my mesentery. In case you didn’t know, the mesentery is the connective tissue that keeps your intestines from falling into a tangled pile around your ass hole.  I was given two rounds of morphine, which resolved the pain. A needle biopsy was scheduled, then delayed then scheduled again and finally happened on April 30.  The final results took another 2 weeks, but it was confirmed that the tumor was a neuroendocrine tumor, which on the realm of good news/bad news is closer to the good news end.

In order to determine if the cancer has spread, I went to Bangkok and was injected with radioactive gallium 68 and had a fancy PET/CT scan.  The injection arrived in a huge lead box, and the hypodermic was shielded by a large lead cylinder.  Yikes!  The scan showed a possible small tumor in a lymph node near my neck and my prostate lit up on the scan suggesting either a tumor there or prostatitis.  This means that the tumor had metastasized.

A bit about this kind of rare tumor.  They normally grow very slowly as mine is (good) but metastasize easily (bad). The location of the tumor on my mesentery is almost 100% likely to be a metastatic tumor, not the original tumor.  In many cases (like mine), the original tumor is never found.  For now, the treatment I have been prescribed is designed to control the growth and spread of the cancer (although there is a 10% chance the treatment will shrink the tumor.  If completely removing the cancer by resection is not possible, then there is quite simply no cure, only control.  Fortunately, several lines of treatment are now available to control these tumors, and many patients live a long time.  So I apparently have incurable but NOT terminal cancer.  The goal is to control it so well that something else gets me first.

On July 5, I had my first injection of sandostatin LAR, a synthetic hormone that attaches itself to neuroendocrine tumors and inhibits their tendency to grow and metastasize.  These injections are not chemotherapy (chemo only works on fast growing cancer).  The side effects are not fun, but nowhere near as bad as having chemo.  I will have 2 more injections 28 days apart followed by another radioactive PET scan in Bangkok.  I am also in the process of obtaining an online second opinion through the MyConsult program at the Cleveland Clinic.

So that’s where I stand for now.  Other then the side-effect of digestive problems, I feel pretty good.  As soon as I can wander farther that 50 m from a toilet, I will resume my jogging program – I am even thinking of trying another marathon down the road.  So life goes on, but my perspectives are evolving rapidly.