December 3, 2018 - The Recreation Floor

Yesterday and today Claire and I have had the opportunity to explore a part of Memorial Sloan-Kettering we hadn’t encountered during my earlier hospitalizations: the Recreation Floor. It’s not an entire floor of the hospital: just a part of the 15th floor, with a rather nice view of Manhattan skyscrapers.

My first couple of days here have all been about getting mobile again after my neck-dissection surgery - a more scary description than “lymph node removal surgery,” which is the kinder and gentler term I’ve been using. Dr. Boyle stopped by today and explained that he took out more than 50 lymph nodes - I’d only heard about 4 or 5 nodes lighting up on the PET Scan, but I figure the removal of the others was prophylactic. He said the pathologist will have a look at the nodes he removed and will let us know what’s going on with them. That will inform our future discussions about possible further therapy, be it radiation or chemo, or good old watch-and-wait.

The fact that the surgery site has continued to drain fluid into the plastic tube - that feeds a little cup nestled in the chest pocket of my hospital gown - is what’s kept me from going home today as predicted. Everyone’s optimistic that the flow will slow down by tomorrow, so the tube can be removed. I’m more than ready to go home. We’ll see.

That means I’m (1) mobile and (2) not receiving much in the way of active medical treatment, which has made me a good candidate for the Recreation Floor. Claire and I have hung out there twice now. Yesterday there was a group of five earnest Juilliard students putting on a little concert/dance performance, and today there was a guy tickling the ivories on the baby-grand piano (movie themes, jazz standards and the like), who I’m pretty sure was self-appointed but who was mighty good.

There’s a cruise-director sort of person who’s in charge of the Recreation Floor, who sets people up for art projects (decorating tote bags and Japanese lanterns), explains how the coffee machine works and lets everyone know which programmed diversions are coming up next. But most people just hang out, enjoying the cityscape view, reading their email or playing board games.

There are two types of people on the Recreation Floor: those solemnly padding around in hospital gowns (some dragging IV poles behind them), and others in street clothes - undoubtedly friends and family either accompanying their loved ones or taking a break from visiting them. None of us patients looked especially hale or hearty, but we didn’t much care. It just felt good to be out of our rooms.

The Recreation Floor is a gentle reminder of the fact that cancer is something you live with. Amidst all the high-tech medical wizardry around here, it’s nice to know there’s a place for painting Japanese lanterns and watching a talented ballet student demonstrate her grace and balance.

It’s about life. Which is the point of it all, isn’t it?

December 1, 2018 - Recovering

Surgery is over: and successfully, according to Dr.Boyle. It took about three hours. Recovery is under way.

None of the unfavorable side effects have taken place. My voice is unaffected.

I don’t know whether it’s because surgery to the side of the neck is more difficult than surgery (thyroidectomy) to the front of the neck, or whether it’s because I’m five years older, but I’m finding this recovery slower going than before. I think it’s a little of both. I’m making progress, though.

One difference is that I do have a drain implanted - a plastic tube sticking out of one side of my incision. This was expected. Nurses stop in several times a day to empty the little plastic cup attached to it. Obviously, there’s no going home until the drain is out, but at this point I wouldn’t have the energy to do for myself at home, so it’s  just as well.

The care here at Memorial Sloan-Kettering is first rate. All the staff are very attentive.

I do very much appreciate all the prayers and expressions of support.

November 29, 2018 — Back to the Operating Room

It’s been more than a year since I’ve posted to this blog — which is a good thing. I haven’t had a lot of medical news to report. But now, that situation has changed.

Looking back at my past entries, I see that, on August 9, 2017, my endocrinologist Dr. Stephanie Fish was talking with me about the slowly-growing lymph nodes in my neck. She said at that time that they were big enough to remove surgically, but that I could also wait on the surgery if I preferred.

I chose to wait. She told me I’d probably need surgery within 2-5 years, depending on what happened to the thyroglobulin numbers.

Well, it’s not even two years yet, and the thyroglobulin numbers have climbed at a faster-than-expected rate. In subsequent visits with Dr. Fish and my surgeon, Dr. Jay Boyle, I got the unmistakable impression that — based on those rising numbers, as well as measurements of my lymph nodes taken by ultrasound scan — my doctors were ratcheting up their pro-surgery lobbying efforts.

Part of my hesitation has had to do with non-cancer-related realities of my life. After 27 years serving one congregation, I’m now in the first year of a new pastorate, and loving it (I started on February 1, 2018 as Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey). I’ve been feeling hesitant to break the momentum of this critical first year, and as long as my doctors were at all open to a watchful-waiting approach, I’ve been content to coast along.

Besides, there’s a bit of a risk to this surgery. Although they reassure me that my cancer is slow-moving and my prognosis is good — and that there’s a strong likelihood the surgical solution will be effective — there are structures in the neck that could sustain collateral damage from the surgeon’s scalpel. The principal concern is nerves: especially one that controls the ability to lift the arm higher than the shoulder and another that controls my left vocal cord.

I figure I can live with some decreased mobility of my left arm, should that be the result. The vocal cords are a different matter: I speak for a living. Dr. Boyle tells me some permanent hoarseness of voice is a side-effect in about 25% of cases. (I’m assuming he’s talking about the general average; as a surgeon who narrowly specializes in this type of surgery, his personal average is surely better than that.)

Until about a month ago, I was hoping I could postpone the surgery until early in 2019. Considering the rhythms of parish life, there’s just not a good time for a pastor to take medical leave in the late fall — what with the annual stewardship campaign, and with Advent and Christmas following soon after.

Drs. Fish and Boyle were clearly not pleased with my foot-dragging, so several weeks ago I  reluctantly agreed to have the surgery done tomorrow, November 30, at Memorial Hospital of Memorial Sloan-Kettering Cancer Center in Manhattan — the same place where I had my thyroid removed.

What pushed me over the edge was a consultation with a third MSKCC physician, Dr. Eric Sherman, a chemotherapy specialist, that took place on October 26. (Yes, my doctors triple-teamed me; and it worked.) There’s a possibility, I learned from him, that it may be wise to follow the surgery with either some mild radiation treatments — possibly a repeat of the radioactive-iodine pill I took following my thyroidectomy — or some chemotherapy, or both. Dr. Sherman was reassuring in predicting that the chemo I may receive will be nowhere near as potent as the R-CHOP regimen I underwent in 2006 for my non-Hodgkin lymphoma. He didn’t seem to think that either of those treatments will slow me down much. So, I’ll wait and see what recommendation emerges, after the pathologist has a look-see at my tissue samples, post-surgery.

Dr. Sherman also explained a detail to me that I somehow hadn’t picked up from what my other doctors had told me. There’s a sweet spot for lymph-node removal surgery: the nodes have to be big enough to remove easily, but not so large that they become enmeshed with other structures in the neck: that would make collateral damage harder to avoid. I’m in that sweet spot now. Were I to wait much longer, the possibility of limited arm motion or vocal-cord damage would be greater.

So, here I am, on the eve of surgery: fearful of post-operative pain, and anxious about waking up with a hoarse voice that may be more than the typical result of having been intubated in the operating room. They tell me I’ll be in the hospital for at least three nights following surgery, because I’ll have a drain implanted near the incision for that period of time. I’ve never had one of those before, so I don’t know what to expect.

The problem is, I’ve had a long time to think about this, to weigh the relative risks of watchful waiting vs. surgery. Had it been an emergency, I simply wouldn’t have had time to engage in second-guessing as I have.

In 48 hours or so, I suppose I’ll know a lot more.