January 29th is my “re-birthday”, this is the day my body got a reboot and my stem cells were replaced.
In 2008 I had my annual physical and first got wind of an issue I was facing; I had an elevated protein level. Long story short, one of the proteins in my body had gone rogue. An antibody started replicating itself without any need and it started taking over my bone marrow. This issue is a form of cancer called Multiple Myeloma. MM is a life threatening form of cancer that most recently has been made more public by Tom Brokaw’s diagnosis and announcement as well as VP Joe Biden’s cancer moonshot. I include Biden’s announcement as Kathy Giusti, the founder of The Multiple Myeloma Research Foundation, was invited to share the success The MMRF has had fighing my disease by creating a unique end to end precision medicine routine focused on high quality and completely open data generation. This is where a cure will originate!
But this post is about me!
On January 29th, I celebrate my 5th Re-Birthday. The problem with MM is the disease wears many faces and doesn’t offer a similar long-term prognosis as some of it’s sister-cancers. This is a blood and bone disease, so it is similar to leukemia, lymphoma, etc. I have had friends who have fought, and won, against Leukemia and Lymphoma. Once they reach that five year point the long-term prognosis completely switches from being deadly to a state of monitoring. Don’t get me wrong, up until that five year mark life sucks. The chemo is rough and the ups and downs you face as a patient are miserable. My two friends are fine and can now focus on a normal life, still monitoring, but more as a precautionary measure.
The issue with MM is that recurrence is expected. If you reach three years without recurrence that is your first milestone. In 2013 I had my stem cell transplant, that date was my re-birthday. Let’s recap what lead up to that transplant. After my initial diagnosis, I went through four rounds of chemo and harvested my stem cells in preparation for an autologous transplant — a transplant of my own stem cells. This may seem confusing but think about what your antibodies do for you.
When you get a cut, a scab forms to protect the opening into your “system” and then antibodies are sent to fight any infection that might occur. When you get a cold it’s similar, in that your body creates antibodies to fight the issue you’re now facing in your chest and nasal passages. When you get the flu or some other issue (the measles for example) your body creates antibodies to go fight the disease! Go Team Antibodies! These antibodies, some that are custom made for that particular occurrence, others that are used over and over again, all stay in your body. They might be dormant for the rest of your life but they’re still there.
In my case, one of those proteins went rogue and started replicating itself even though there was no need. All these replicated antibodies needed a home — my bone marrow. As they reproduce you start to run out of room. The antibodies start taking over your marrow, your blood making factory. When they run out of room they eat through the bone, similar to a termite to wood. This releases the proteins and calcium into an area of your body that is not ready for those things. Creating brittle bones and other complications due to the calcium and proteins released throughout the body.
Something triggered that antibody to replicate over and over again. What if I just got rid of ALL of my antibodies and started over? That’s what my re-birthday was like.
In 2009 my disease progressed to the point where my bone marrow had 80% plasma cell pentration (those bastards took over 80% of my blood making factory!) It was time to take action. The first step was four rounds of chemo where we attacked the disease to knock out the cancerous cells. We then harvested my stem cells, hoping to get clean, clear stem cells that don’t know anything about this cancer. These were put into the freezer, sort of like Walt Disney, to be used when needed. After the harvest my cancer came back, almost exactly at three years — as predicted. My Doc decided it was time to do the transplant and really reset everything. Imagine being able to reset your body clock, eliminate any record of the antibodies that exist today and replace them with the ones you previously harvested. That was my re-birthday. All those antibodies that were created since my original birthday were destroyed — Melphalan killed every last one of them. My harvested cells were then returned and it’s like I have a brand new operating system — like getting a new battery for your iPhone!
I made my first milestone at 90 days after the transplant. No trace of the disease.
I made my next milestone three years later. No trace of the disease — this was looking good.
My next milestone was five years later — and that’s where I hit my hurdle. At my four year checkup, I had an MRI and a bone marrow biopsy. The MRI indicated some issues in the spine and in my pelvis. I’ve never had any bone issues so this was surprising. I did spend the spring and summer playing touch rugby with a bunch of young, very fit guys down in East River Park. Having no cartilage in my hips and sprinting for the first time in I don’t now how many years, may have started jostling things around more than expected but I wouldn’t think it would light up my MRI. Luckily, the issues raised by the MRI were overturned by the subsequent PetCT which confirmed there was no cancerous activity in the region.
The biopsy however, told a different story. For three years straight there has been no trace of the disease. Now, for the first time since my transplant, the biopsy is identifying a very trace amount of the disease. The disease can’t be seen in the blood tests but the biopsy clearly shows there is something going on! A few weeks ago I had another biopsy so we can see how far the disease has progressed. I won’t know anything until mid-February but I know it’s there and these coming results will help identify if we are taking action or waiting to see how it progresses.
So it’s my re-birthday, and it looks like I’m back on this carousel again. The good news is I react well to the drugs. If we can knock this thing into remission for another four years then my docs believe there will be a cure. This deadly disease becomes a maintenance disease at worst. Nothing is ever final when dealing with this crap but I am taking the Half Full viewpoint. The Half Empty perspective puts you on the losing side before the race even starts and I don’t intend to lose this race.
Thanks for reading and happy re-birthday to me!