I've been reluctant to post about this for a variety of reasons, and one of those reasons was realized this morning. But given that recent development, I think now is the time to unravel this twisted tale and share with everyone what I've been going through the past ten days. So, follow along and enjoy the ride, knowing that a freeze frame and sappy music awaits you at the end of the episode.
Three years ago, I saw a number of doctors about a lump on my foot that had been growing over the past five years. No one seemed to know what it was, and finally a vascular surgeon agreed to take it out and perform a biopsy. We heard back that it was a dead lymph node and nothing to be worried about.
Flash forward to this October. I've been keeping an eye on the scar tissue where the lump had been removed, and I think it might be getting bigger. Since I want to ensure a clean bill of health for the Peace Corps, I decide to have it checked out and schedule an appointment with the clinic who had taken it out before.
The evening of the last Sunday in October I get a phone call from the head of vascular surgery. He's on the road and the reception made it difficult to hear, but the message is unmistakable. They've known I've had cancer for the past three years, but no one had bothered to tell me. Also, the doctor who had seen me has moved on, so it will take a while to figure out what happened. He says they are looking into it, but I would have to wait until Thursday to know more. So much for my clean bill of health.
The four days of considerable anxiety happen to include my peace corps interview. I don't mention it.
At the appointment on Thursday, I find out at least three mistakes were made. (1) Lymph nodes aren't located anywhere below the knee, so whatever they pulled out wasn't a lymph node. (2) An appointment was never made to tell me the pathologist #1 thought I had melanoma. (3) Pathologist #2 looks at the slides this week and says it isn't melanoma, but a rare form of cancer called clear cell sarcoma. Do yourself a favor and
don't google that.
The doc also says that from the looks of it, it is a very 'indolent' tumor (that's my kind of tumor!) and that decreases the chances that it has spread. However, if it has spread, it probably would go to the lungs. They need an MRI, CT scan, bloodwork and chest x-rays before they know anything further. The tentative plan would be to take a swath of skin and 4 tendons off the top of my foot, and maybe a (real) lymph node or two out of my thigh to see if it spread. This would happen the day before Thanksgiving.
The hospital called in their risk management people to get a feel for how pissed I was that they knew I had cancer for three years and didn't tell me. I won't go into details, but they are picking up the bill for all the pre-op care, as well as anything that the insurance doesn't cover after that.
All the tests are performed that day, including the MRI. (Thank you risk management!) The closest available x-ray machine is in the plastic surgery ward. The nurses there say, "Gee, no one in plastic surgery gets their chest x-rayed. You must be pretty special!" I don't know what to say, so I say nothing.
They send us home, for another week of waiting and hoping. My doc has to consult the cancer board, which meets every Wednesday, with my test results before they know anything further.
I spend a lot of time with my family, call my sister to break the news. She and her fiance make plans to drive up before the surgery and spend time with us. To deal with stress, I go for a lot of long bike rides. It helps me feel normal and healthy. I deliberate day and night if I should tell anyone else, and how, and in what order. I don't. My reasons:
- I want to feel as normal as possible for as long as possible.
- I don't want it to be an excuse.
- It's better to give you guys a book report than to write you into the novel.
- It could be a huge mistake. They've already made three, remember.
Ready for the freeze frame yet?
The doc called me this morning with my test results. X-rays: clear. CT scan: clear. Blood work: A-OK. Nothing even showed up on my foot from the MRI. I like to think that the lungs spread to the foot, rather than vice versa.
They still might want to take the lymph node, just as a further diagnostic. Given the test results, they gave a higher priority case my time at the tumor board, so it'll be a couple weeks before we get the whole story. I'll know a little more tomorrow, and a lot more by next Thursday. Things are looking up.
I'm going to go ride my bike now.
