I’m Turning 3 — Happy Re-Birthday!

(originally published on Medium.com)

January 29th is my Re-Birthday.
On January 28th, 2013, I checked into Mt Sinai, the docs gave me a massive dose of Melphalan, I chewed through 2 and a half pitchers of ice chips and I killed all my stem cells. On January 29th, hopped up on Ativan and a cocktail of many other drugs, I received a set of “clean”, frozen stem cells I had harvested back in 2010. Since all my stem cells were brand new, they called it my Re-Birthday. I have a form of cancer called Multiple Myeloma for which there is currently no cure.

Multiple myeloma (myelo- + -oma, “marrow” + “tumor”), is a cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies.[1] In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. (Wikipedia)

The primary process in fighting this disease involves a few steps. First there is chemotherapy, to reduce the presence of the disease in your body. Then they give you a high dose chemo that works like Raid™ — all the T-cells in your body that have been exposed to the chemo will die (“where stem cellscheck in but don’t check out”). Your body continues to create new T-cells, and these havent been exposed to the chemo, they are brand new, but if you don’t get them built up fast you’re essentially John Travolta in The Boy In The Plastic Bubble. To amp up stem cell production, you’re given Neupogen. In about a week you’re ready for harvest, and you hope it’s a good one! You’re in a bed for about 3 days with your blood taken out, spun through the rinse cycle, stem cells removed and blood returned. Your goal: collect 15 million T-cells to put in the freezer.
The apheresis machine that separates the stem cells — next stop on the Orange line?
Once you’ve harvested your cells you go through the actual transplant. This is called an Autologous Stem Cell Transplant, when the stem cells come from your own body. Similar to the stem cell harvest, you kill all the cells that exist and start from scratch. In my case I went 36 cycles of chemo (about three years) between harvest and transplant. Others go straight to a transplant. The transplant is like giving your system a reboot — start it over and see if it works normally or does it still create that lousy plasma protein that represents this form of cancer. So Re-Birthday sort of makes sense.
An average stem cell transplant takes 5 million T-cells so your harvest means you can potentially have three transplants. That’s the rub though, you usually only have two of your own transplants — if it doesn’t work after two then you look for something else. Something else usually means an Allogeneic Stem Cell Transplant, where the stem cells come from a healthy donor. This brings other risks to the table like graft vs host disease. But I digress…. The Stem Cell Transplant, that reboot to your body, is the best chance to get your body back on track so it stops producing the cells that create the cancer. As I mentioned, there is no cure for this disease so this transplant could work but isn’t a cure so you have a benchmark to at least give yourself an idea of where you stand.
I’m wary as I type this.
If you bring an umbrella it won’t rain.
If you don’t say, “The Jets have got this one”, they won’t lose in the last minute.
The first benchmark, after a stem cell transplant, is three years. I mentioned that there is no cure for this disease and the expectation is within the three year time frame the disease will return. That is the norm. Needless to say, the ‘norm’ sort of sucks.
My last check up was a few months ago and, as of that time there was no sign of the disease. In May of 2013 I had a bone marrow biopsy, PetCT, MRI, all to confirm the stem cell transplant had successfully pushed back the disease. Now that I’ve had a full reboot and we’re at the three year mark, we need to go beyond bloodwork analysis, check under the hood, and really look to see if this disease is truly gone. That doesn’t happen till April. And after the tests take place it is about nine VERY LONG days waiting for the results. At that time I’ll know if I’ve beaten the three year benchmark.
I’ll bring my umbrella and I won’t mention the status of the Jets game.
What I will mention, to even be in this situation, is something for which I am truly grateful. There were three guys going through a transplant at the same time I was. Two of them have passed away. Those are really shitty odds. I don’t have that risk factor they had but it’s important to realize that others do.
People make me out to be a hero or inspiration because I’ll take the time to write down these words and bare my soul — but that’s simple compared to what others are going through. Not really much else you can say here so I’ll talk about the strength that these others represent. Since I got diagnosed I’ve met, directly and indirectly, many other patients and I have yet to meet one that’s “given up”. Those are the odds I’m looking for!
I’ve lost three friends in the last two years? All of them fought till the very end with the most impressive attitude, strength and spirit. I have another friend (patient) that just climbed a mountain (a real one!) I have another friend (patient) who is a grandmother and climbed the Empire State Building with me. In fact there were six of us patients on that climb (which was exactly one year after my stem cell transplant). I know a patient that has run something like fifty marathons. I know a few ladies (patients) that have done Tough Mudders or Spartans or whatever those races where you do bizarre stuff are called! I know a very special patient who has dedicated herself to educating others on this disease and has become a renowned patient advocate. I know a lady (patient) down South that came to NYC just to meet a guy that does a lot for this disease (he’s not a patient so he doesn’t count! :) I know a patient that jumped off a bridge in the UK — he’s fine, he had a big rubber band attached. Now, unfortunately, it’s a dialysis machine.
I write blog posts.
And I brought an umbrella and won’t mention the Jets.
On my three year re-birthday I am thankful for everything I have but there are too many that don’t have everything I have. For those, realize there are others out there who feel or felt the same way you do. I didn’t want to reach out to anyone when I got diagnosed. I just started typing and inadvertantly ran into some really great people (patients). There are resources and there people that will help you realize that you too, can be strong. At first you may not think that’s the case but I know one lady (patient) that seemed to feel that way when she joined a Myeloma Facebook group. She is now a moderator of that group and helped lead the world in Mambo For Myeloma!
Having cancer sucks. Worse, it’s deadly. But I know the friends of mine that passed these last few years would be really pissed at you if you just gave up. There may be times when things aren’t so rosy. Take the time to write it down. You can publish it here, put it on Facebook, or simply tear it up, put it in an ash try and sacrifice it to the gods. I think you’ll find it gets part of it out of your system and reinforces your internal need to fight.
So on my third re-birthday, joine me in saying F-cancer!
In May I’ll talk about my umbrella and the Jets — till then, simply F-cancer!