Bobbing Along

Assuming you have read my previous posts about the uveal melanoma diagnosed in mid-2006 (and if you have not, begin here and continue here and here), then you may be wondering why I have chosen now to finally write about it. I mean, I’m slow with my posts but twelve and a half years?

Okay. I admit it. Taking twelve years to write about something that significant awesome may not be so unusual for me. I adapted to the eye and moved on. The only part of the experience stubbornly kept alive is being a one-eyed Pirate which is just too much fun for this grandmother. The eye never slowed me down. It has become just another point of fascination for the grandkids. Simply put, it added to my panache.

In truth, my melanoma was considered to be an aggressive form of the disease (a monosomy 3, whatever the hell that means). I kinda figured something would happen eventually but until it did, I was moving forward. Once a year, I would visit the ocular oncologist who had diagnosed it. Once a year, I underwent an abdominal MRI to rule out metastases. For twelve years, each MRI had been clean. In September 2018, that ended. With a thud. The newest MRI showed a spot on my liver.

After all this time, could my time be up? I was well aware that the primary site for a melanoma to metastasize is the liver. Fortunately, we knew where to go: back to Philly, this time to the Sidney Kimmel Cancer Center. There we met with a treatment team that specializes in Metastatic Uveal Melanoma cases and is diligently conducting clinical trials to find effective cures for the disease. Everyone—including Dear Dave and me—assumed that was what this spot was: a metastasis. After all, what else could it be?

The prognosis was not looking particularly positive. The tumor was in a very bad location, wedged too closely to some major blood vessels. Removing the tumor was deemed unlikely, no frankly, impossible. My options seemed to be a clinical trial or radiation, both palliative but not curative. Before we selected an option, we had to confirm via biopsy that this was what we knew it was.

But—surprise of surprises—it wasn’t. It wasn’t that at all.

After two biopsies, we were floored to learn that this was not a metastasis of the previous melanoma. It was a brand new, equally rare, primary liver tumor: a cholangiocarcinoma. Uh. Oh. Now what?

Suddenly, we found ourselves adrift. Out to sea. Cast away, as it were. The treatment team in Philly, as extraordinary and as wonderful as they are, was not the right place for us after all. And this tumor with the new name? It was still in a terrible location and it was still a nasty cancer to have.

Three weeks later, after many hours logged onto our computers, after a number of inquiries by phone, and after many conversations with professionals and friends whose wisdom and guidance we can never repay, we headed to New York City’s Memorial Sloan Kettering Cancer Center. And there we found the answer to our prayers.

We met with Dr. William Jarnagin, Chief of the Hepatopancreatobiliary Service (try saying that three times quickly. Actually, try saying that once!). It was Dr. Jarnagin who gave us the second surprise of this saga: he was confident the tumor was removable after all.

Two weeks later, I walked into the operating suite. Yes, in my hospital gown, open in the back, butt flying in the breeze, I walked myself down the hall. No, it’s not at all the way tv and movies depict it. There was no lying on a gurney, family gathered clutching my hand, sobbing and blubbering. None of that. Thank God.

Almost four hours later, the tumor, along with half of my liver, was removed by Dr. Jarnagin and his team, including this Surgical Oncology Fellow, Dr. Jash Datta, whose steady, gifted hands sliced that sucker right out of my body. Gifted doesn’t begin to adequately describe his skills as a surgeon. Add to that his devilish sense of humor and his compassionate care, his future as a physician is brilliant.

I started down this path feeling absolutely fine. I had no symptoms, not an inkling that anything was amiss. With the melanoma, I knew my vision was compromised and because of that, I sought help. With the cholangiocarcinoma, I knew nothing. Were it not for my annual MRI, I would still be without a hint of a problem. Once the cancer began to affect me, it would have been quite advanced and this story would be very different. The eye—or the melanoma of the eye—proved to be one gigantic silver lining. And that, my friends, is something I would never have imagined saying.

I am grateful beyond words for the care I have received both in Philadelphia and in New York. Everyone—and I mean everyone—with whom I came in contact was so kind, concerned, and patient, and so damn good at what they did! From the receptionists to the custodians, from the surgeons to the aides, my experience was truly remarkable. There are many more parts to this story which will be shared eventually. For now, I am concentrating on my recovery, my art, and, as you can tell, my writing.

I am currently undergoing chemotherapy, which to date, is going pretty well. I feel strong and I am determined to live my life as I did before, making the most of every day. I was blessed to have the prayers of many, many people. I am extraordinarily grateful for Dear Dave who has been at my side, taking such good care of me, steadfast in his support. Without question, however, I must be grateful for that melanoma which required the MRI in the first place.

Crazy. This life is just crazy but I’ll take it—silver linings, surprises, and all.