One year with cancer

(You can choose to listen to this instead)

This map shows where I was. The sun was bright the morning of Dec. 6, 2018. Bright in the way that the depths of winter bring, the kind of glare that makes curves like this one a little dangerous. That’s where I was a little before 8 o’clock that morning, on my way to work at Southern Nuclear. (I was on a temporary rotation, filling in for someone on maternity leave.)

I remember wishing I had sunglasses, it was so bright. And then my music was interrupted by a phone call. It was Dr. David Lemak, the orthopedic surgeon who had been helping me figure out why I was having odd swelling in my left ankle. I had last talked to him on the 4th, when I had gone in for an MRI. We thought it was a blood clot.

We were wrong.

The conversation wasn’t long, but I wasn’t in much of a mood to remember everything. Not under the circumstances. So I ended the call and the commute by asking him to text me a summary. I wasn’t going to write anything down while driving on that road, in that sunlight, with that glare. A glare joined by a looming sense of darkness.

That was then; this is now.

It’s been one year now. 365 days of living with Cancer. Granted, it took weeks for any one of my medical professionals to enunciate the C-word. Apparently, it takes that long to run out of euphemisms like Tumor, and Mass, and Sarcoma, and Anomaly, and Growth, and Thing – and then the various Oncologists you see along the way. Great lengths to avoid a word.

But, yeah. The tumor had been there for a while, so I have lived with it for more than a year. But it isn’t living with cancer that gets to you — it’s living with the knowledge that you have it. That your body is betraying you.

I apologize for not updating this as often as you might like. Not that you are into Schadenfreude, or any other dark motive. It can be frustrating to care, and want to be in the know – and not get as much information. (Sorry, mom.)

The fact is that I nearly pulled the trigger on updates several times. Ended up leaving them as drafts, or deleted entirely. Something would gnaw at me. Something other than the mutinous cells.

For example, I had a wonderful update announcing that I was not going to have to do any chemotherapy after the radiation. That they’d decided local nuking of the knee would wrap things up. I am glad I didn’t publish that, because a couple of days later I got the news that the chemo would continue anyway.

That was a big shift, but there were a lot of smaller shifts. I didn’t feel any need to drag you on a roller coaster of good news and bad news and hopes and dashed hopes and two steps forward and one to the side and three steps back and now I am leading you all in a ridiculous Electric Slide of emotional energy.

Here I am, finally hitting a milestone that isn’t going to change. And there is more certainty and clarity about what is in the immediate future. I am one year into life with the knowledge of cancer. I have done:

• Five rounds of chemo
• Surgery
• Six-and-a-half weeks of radiation
• Three more rounds of chemo

Round nine will be in the first full week of December. Round 10 will be the first full week of January. Rounds 11 and 12 will be scheduled based upon how my white cell and platelet counts hold up.

Why so much treatment? It has to do with McMurray. Turns out he is a rather rare bastard, more than we knew.

What is McMurray? He was a mutated variant of something called Ewing’s Sarcoma, in the “little round blue cell” family of nasty cancers. Ewing’s has literally dozens of bastard cousins, that for the most part are not as virulent and aggressive as classic Ewing’s. It was rare enough that a guy hitting 50 would have a sarcoma. But when they ran the genetic typing on the mass, they compared it to the same markers in the historical record.

There are only six other cases in the known literature. Six. Not enough to do any kind of study to know the best treatment path. Not even enough to have information on survivability.

The reason this matters is because I have no math to leverage for a treatment path. There is no Life Expectancy range, there is no delta for how various treatments and chemicals and protocols might affect that. We are flying blind.

So the decision came to me.

• There are several things about McMurray that differ from Ewing’s
• Every one of them seems to differ in a way that is in my favor
• There would be a small chance of some type of recurrence.
• However, if it gets to my lungs, it is untreatable and fatal.

Driving blind, but still at the wheel

Rounds 6-12 of chemo are really my decision. The calculation broke down as follows. Take the risk (unknown but presumed small) of dying in a few years. Or hammer my own body with additional poison, to knock the crap out of every mutant cell – at the cost of my future stamina and other things. Cancer drugs can damage you heart, and your liver, and your bladder. You’re essentially carpet-bombing every cell in your body, with the hopes that the greedy cancer cells will absorb more poison and expire before you do.

300 years from now, humanity will look back upon us and proclaim us barbarians, and inhumane. They will consider us as backwards as the barbers who did bloodletting. They will probably also shake their heads at how hamfisted we were with radiation therapy, blasting whole regions when there were more precise ways to deliver the blow.

They will also probably be using CRISPR, too. (CRISPR is a technology that allows doctors to use the cells own cut-and-paste functions to remove bad DNA sections and replace it with the right sequences.)

But I don’t have CRISPR yet. I don’t have magic wands. What I have is the knowledge that there is a microscopic mutant mutiny going on within. What I have is sudden and severe bouts of fatigue. What I have is an oppressive sense of timelessness, because planning anything more than a day or two can be difficult at best, impossible at worst.

What I have is a foreboding sense that I will never feel like I did before. The strength, the energy, the vitality, the crispness of mind and of attention.

Stealing lives, one moment at a time

Cancer has robbed us of a lot of lives – but it also steals from the living. I can’t begin to count the experiences I have missed because I can’t get out of bed. Because I can’t be around others while immunosuppressed. Because walking to the car often requires a rest before I crank the engine. It has stolen experiences and stolen enjoyment, and… wait. Wait a moment.

Cancer hasn’t done these things at all. I have done them. These are all side effects of the treatments. I am down and low and scraping by because I am committing periodic installments of le petit suicide, partial suicide with every dose. Trying to kill off the part of me that would greedily end me without remorse.

Cancer is the zombie, that relentlessly pursues you. It is mindless, and defeats you in the long game. One zombie doesn’t get you – it’s when you succumb to the mob. So I am nuking and poisoning the entire battlefield of my body, hoping that I am just nimble enough and strong enough to outlast the horde.

An attitude of gratitude

I haven’t exactly been fighting alone. I have had an embarrassingly high degree of assistance and support and cheerleading from every corner. Those who drove me to and from appointments when I couldn’t. Those who brought me meals. Those who helped me move and set up my apartment. Those who helped me take out the boxes. Those who rearranged work schedules and assignments and expectations to allow me to function and contribute. Those who cheer me on and those who cheer me up. Those who have loved me when I haven’t deserved it. Those I thanked and those I didn’t and those I never meant to hurt. Those of you who cared enough to hit the button and are now reading this update, either on the site or in your inbox. Those of you who have generously offered to help, and for whom I have not yet had a task. Bear with me.

I know who all of you are. And one of these days, I will find a proper and appropriate manner of thanking you. Even if it takes me a lifetime to complete it. It’s all we have, really. We all have 100% of our lives to go.