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The Process, Part 3

Posted: Updated:

Nov. 18, 2013

This all started in August 2012, when I wanted my dermatologist to remove a red spot on my face I thought was marring my appearance.

Thank god for vanity.

The small red mark on the bridge of my nose turned out to be Merkel cell carcinoma, a very rare and extremely aggressive form of skin cancer.

Don't be surprised if you haven't heard about Merkel cell. There are only about 1,500 cases each year, and pharmaceutical companies don't typically show good-looking models in television commercials enjoying life after using the pill they created for a disease that so few people get. Unofficially, Merkel cell and similar maladies are called "orphan diseases" by the pharmaceutical industry because, from a business standpoint, no one thinks them worth pursuing. There just isn't enough profit to be made.

Neither my dermatologist nor I suspected that red spot was anything serious. The first pathology report came back as inconclusive because the sample sent to the lab -- the whole thing that was visible -- was too small to be tested properly. The pathologist couldn't tell what it was so he listed all the things -- including Merkel cell -- it could possibly be.

I work in Washington, D.C., so I know a CYA note when I see one, and this looked to be just that: Cover-your-ass by excluding nothing so you can't be wrong no matter what the eventual outcome.

But even though the pathologist included Merkel cell in his report there was no reason to suspect the worst. Merkel cell was the least likely of all the things on the list of what that ugly-but-small lesion could be. It was so likely to be something not terrible that in my typically very optimistic way I never gave it a second thought.

Except that it was Merkel cell.

I found out for sure when a second dermatologist recommended by the first (#1 had left for vacation) re-excised the area where the lesion had been, looked at a larger and deeper portion of skin and did a test in her office lab that determined it absolutely was what it was not very likely to have been. An additional study that took 10 more days to complete confirmed the diagnosis.

Suddenly I had an aggressive cancer that had to be treated.

Suddenly I had a hole the size of a dime on the bridge of my nose that was going to require surgery to close.

And suddenly my type-A always-determine-the-agenda-and-set-my-own-priorities life was in shambles.

In spite of everything else that was happening, dealing with what my internist told me was "a serious cancer" instantly had to become the most important thing I had to do. Letting others set my schedule was my new way of living.

One of the reasons the days immediately after the diagnosis were so difficult was that every step in The Process was never as simple or straightforward as I thought it was going to be. This wasn't like getting a flu shot and then continuing with what whatever else is on your calendar. In fact, rather than being a one-time, over-and-done event, every treatment I had led to additional medical requirements that I hadn't anticipated.

I had to come up with a process that made it easier for me to deal with what was happening to me.

I called the first step "discovery." This is when you realize that something is wrong but you don't know what it is. This is when you hope that the lesion, lump, persistent cough, constant ache or whatever else you're experiencing is minor and will go away on its own. You use every previous experience to convince yourself that it's just like the last time... when it was nothing. This step continues until you realize... or finally admit... that you need to get the lesion, lump, cough or ache checked out.

I called the next step "diagnosis," that is, when a health care professional determines what the problem is likely to be. The diagnosis may be immediate or, as it was in my case, something that takes days or weeks to determine and confirm.

The third step was "management," when you decide what to do about whatever was diagnosed and then get it done.

The problem is that each of these three steps typically has multiple surprise phases, and that makes any or every one even more difficult to deal with.

In my case, for example, the discovery step included my dermatologist performing minor surgery in her office to remove the small lesion. That required a few stitches and a week or so of my treating the incision so it healed properly. It was anything but a get-a-flu-shot one-time event.

The discovery step also included the follow-up with dermatologist #2 and a week of dealing with a hole on the bridge of my nose until I could schedule the procedure to close it. That meant washing my face differently and using ointments and bandages. It also meant that previously simple and mindless activities like toweling off at the gym during a workout had to be done with some forethought.

The surgery, which was far more involved than I had imagined because it required taking skin from one part of my face to fill in the hole, was done under general anesthesia in a hospital and that required several days of recovery. There was another week or so before the stitches were removed and then three months of scar treatment to minimize the impact on the way I looked (Remember... this all stated because I am very vain).

The management step included also regular three-month follow-up visits with both a medical and dermatologic oncologist. The exams were easy but time consuming and more than a little stressful given what they could find.

I didn't need any follow up treatment like chemotherapy or radiation because my surgeon and the two oncologists agreed that neither was required. This was based in large part on a sentinel node study -- where radioactive dye was shot into my nose to determine the lymph node to which it drains -- that showed the cancer had not spread beyond the original lesion. Because of that, I was told that I had no more than a 10 percent chance of a recurrence.

A little more than a year later the 10 percent chance of a recurrence turned out to be wildly optimistic when (Step 1) I discovered a lump under my right jaw, (Step 2) an ultrasound and needle biopsy confirmed that it was a recurrence of Merkel cell and (Step 3) I needed surgery to remove the cancerous lymph node.

The week-long recovery from the surgery was the easy part. Step 3 also included eight weeks of radiation that involved a number of uncomfortable side effects.

That's what I'm calling The Process.

This is a continuing series of blog posts by Stan Collender about his experience fighting cancer. "The Process" Stan is describing began last August.

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