Sisyphus and the 8 cm Tumor

20 Mar

Sisyphus

 

I don’t want to bury the lead, so….final pathology, sarcoid tissue, nothing else.  I have sarcoidosis, the type that typically presents in people of Northern European descent (it can be a very different disease in African-Americans).  I will likely have to be watched the rest of my days to make sure that I don’t exhibit any symptoms and to be sure the disease doesn’t spread to my organs… so, that’s good, I guess.  Still, this post is not entirely about my diagnosis.  Maddeningly, it is also about the large, bizarre, and to my knowledge, benign tumor sitting in my chest, as well.  And so this is also a post about frustration.

Midday on Tuesday I called my doctor’s office to check in on a few things.  My protective bandages had begun to give way a week earlier than I expected.  I wanted to see if I could return to aspirin and fish oil, both of which I stopped taking a week before surgery.  And, of course, I wanted to see if the final pathology had come in.  About 6:30 that night I got a call from my surgeon’s office.  Apparently the loss of the bandages indicates, and I quote, “young oily skin as opposed to old dry skin”… (sexy).  I can get back to aspirin and fish oil whenever I want.  And the pathology came back as sarcoid tissue, nothing else.  Whew, what a relief!  But then I was told that my surgeon would present my case to the thoracic tumor board on Wednesday (which is not, in fact, a board composed of tumors, but rather a board of doctors who specialize in disciplines that frequently see and treat tumors)..  “What?! I thought I was done.” I thought it was time to move on to a rheumatologist or some other specialist to begin my new adventures in Sarcoidosis-land (Sarcoidosis-ville?  Burg?  Thoughts?).  “Why does he feel the need to discuss my case even further?  What is the point?”

“Well,” my surgeon’s wife said, “everyone just wants to make sure they’re not missing something.  You’re a young guy with kids.  We want to be careful and make sure we’ve considered every possibility,” or words to that affect. 

“What else could they be looking for?” I asked. 

“I don’t know,” she said. “Don’t think about this as a bad thing.  Think about this as a group of doctors who are really looking out for you.”Easy for her to say! I’ve been at this for 5 ½ months.  I want some closure, some sense that this chapter in my life is over and a new and better one has begun. 

Interestingly enough, one of my rabbi friends (like I said in my last post, I seem to know a lot of rabbis) predicted that something like this might happen.  I was talking to him just before my surgery.  I was lamenting how meeting my surgeon and being told, again, that I may have cancer had unmoored me.  I was stunned at how fragile I was.  “All of that work, I did, the eating better, the meditating, the Tai Chi, that was all bullshit,” I said.  After all, one stressful visit to a doctor and I had ceased to engage in most of those activities (See my previous post, Getting Back Up on the Horse).

 My rabbi friend reminded me that it was natural for me to feel beat up at that moment.  “Besides,” he said, “you don’t do all that work (the Tai Chi, the meditating, etc.) to keep from being knocked down.  You do it so that you have an easier time getting back up.  You do it for your wife and daughter.  You do it to deal with the next doctor’s report.”

“Wait! What do you mean the next doctor’s report?” I asked.

“Look, Erik, the way this thing has been going for you, I just don’t imagine that any report will be simple or straightforward.  They’ll probably be some new thing for you to deal with.” 

I guess he was right about that.  I mean, even if the tumor board said gey gezunt, which as you will see they did not, I will likely spend the rest of my life watching and being watched.  Doctors will watch my tumor, my new condition, my weight and cholesterol (which they would have watched anyway), my blood pressure, my blood sugar, and on, and on, and on.  In July I turn 50, and apparently 50 is the colonoscopy birthday…so there’s that.  And so I do the work, the re-formation of my life and lifestyle, to cope with all of these things and maybe live a better life than the one I lived before this whole mess started.

This morning the surgeon and I sat down to discuss the deliberations of the tumor board.  I’ll keep it simple.  They have no idea what the tumor is or its essential nature (benign or malignant).  They have no idea if it will grow or shrink, and so they recommend I have it surgically removed…probably.  Oy!  Where does that leave me? Basically where I was in November, which is to say I will get a scan in June.  If the tumor grows, we get it.  If it shrinks, we finally have an answer about its nature (benign).  If it stays the same, then I am forced to decide whether or not I have surgery. 

My sense of limbo continues, or perhaps not.  After all, limbo is a state between heaven and hell, and while I don’t really feel damned, there is a certain sense of Sisyphean condemnation in the way I am asked to expose my tumor to testing again and again, and when I come to the doctors to understand what the Oracle of the Pet Scan or the Mediastinoscopy has to say, I am basically told the same things they told me before the last procedure. I’m at the bottom of the hill….again…just me and my tumor…and all of you, of course.  The truth is that without your support this experience would be unimaginably more difficult.

So this is where things stand.  I live to scan another day and to try and live a better life with my brief reprieve from medical experimentation.  I cannot thank all of you enough for your prayers and good wishes.  I continue to need them.  Perhaps I have always needed them and will need them forever.

Stay tuned. 

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