3 years

When I woke up this morning I got to thinking that it was March already.  I knew that it was sometime in March 2012 when I initially got the call from Dr. Lown that the biopsy from my upper endoscopy had come back positive for esophageal cancer.  I just looked back at my calendar and it was March 2 of that year when I received that call.  So as of today it has been 3 years.

Stage 4 esophageal cancer has a reputation for killing people fast.  Hardly anyone with this diagnosis lasts 5 years.  Most don’t last even 1 year.  I am incredibly grateful that I have reached this milestone and still feel very much alive. My body has served me well.

One of my favorite stories (that I probably have already told in this blog somewhere) is how a simple screw-up in an early medical procedure saved or at least extended my life.

When I was first diagnosed as having the adenocarcinoma cells in my esophagus near the junction of my stomach, there was initial concern regarding staging, as early stages are survivable. Unfortunately, most cases are discovered late because by the time you typically experience symptoms, the disease has already spread. Still, there was hope that we had discovered it in an early stage.  A CT/PET scan would tell the story.

After the scan, I received the bad news that there were hot spots in both my liver and in the center of my chest, in the mediastinum area. This could indicate stage 4.  But to be sure that these hot spots were cancer, they would need to be biopsied.  The liver biopsy was done first since it was relative easy to get to… just a poke through soft tissue.  I was told that if that biopsy revealed esophageal cancer cells, that that would indicate metastases and I would be considered stage 4 and they would not bother to biopsy the spot in my chest, as that would require a thoracic surgery and there was no point to put me through that because it would not change my diagnosis.

Well that liver biopsy came back negative for cancer and the thoracic surgery, using the minimally invasive daVinci robot, was scheduled.  The doctor was hopeful that the hot spot in my chest would also be negative for esophageal cancer as that would indicate a lower stage cancer and I would be a candidate for esophagectomy; a major surgery but also the gold standard for surviving this disease.  They would not perform an esophagectomy on a stage 4 patient because it was considered too invasive to put someone through who had perhaps only months to live anyway.

So it was a weird mixed blessing when the results of the thoracic biopsy came back negative for esophageal cancer but positive for a particularly aggressive strain of non-Hodgkins lymphoma.  The good news being that the lymphoma was deadly but curable through chemotherapy and stem cell transplant, and the lack of adenocarcinoma cells meant that my esophageal cancer had not metastasized, meaning I was early stage for that cancer, and was therefore operable.  I had the operation to remove my esophagus days later and a plan was set in place to put me through the chemo to kill any lymphoma left in my body.

But then the other shoe dropped.  The guy who had done the liver biopsy was looking back at reports and decided that he was not 100% sure that the biopsy he had done had actually sampled the concerning spot.  He asked to repeat the liver biopsy.  This was done and this time it came back positive for esophageal cancer.  I was now considered stage 4.

Bad news, right?  But here’s the thing that occurred to me later.  If that first biopsy had not been screwed up and had come back positive, they would not have gone in to test that spot in my chest.  They would never have discovered the fast-growing, deadly lymphoma there and untreated, it would have quickly killed me.  As it turned out, the doctor was able to cut out the entire lymph node with wide margins during that daVinci surgery and evidently he got it all, as it has not returned.  I received the life extending esophagectomy and because of the eventual stage 4 prognosis I was not put through the grueling stem cell transplant rigmarole to cure the lymphoma.  And here I am 3 years later, having a life beyond expectation.

Tomorrow I get the results of last Friday’s quarterly CT scan.  We’ll see if my weird luck continues.