I’m a blogger! Despite how I got here, I have to say that I’m pretty excited to call myself that. I have always wanted to blog but decided that I was not nearly interesting or creative enough to sustain a blog. But guess what? I just got interesting. Not in a way I ever wanted to, but here goes…
Background
I’m going to have a bone marrow transplant. I have been diagnosed with Aplastic Anemia (AA). AA is a Bone Marrow Failure Syndrome, which essentially means that my bone marrow is not working properly. Why does that matter? Well, because our bone marrow is the factory that makes our red & white blood cells, and platelets. Red blood brings oxygen to your to entire body, white blood is your immune system which fights infection, and platelets prevent excess bleeding when you sustain an injury. All very necessary. While we’re on platelets; a normal person is supposed to have between 150,000-400,000, I only have around 25,000 (sometimes dropping to 10,000) and they’ve been that way for the past year (though it has likely been much longer. I beg you to PLEASE get an annual checkup with your doctor and get a basic CBC done.) The cause for this type of AA is unknown, and only about 600-900 people are diagnosed per year in the U.S.
Luckily there is a cure for AA in the form of a bone marrow transplant from a matched donor. Thankfully, my wonderful big sister Nancy is a 100% match for me!
Transplant
The transplant will work by taking some of Nancy’s bone marrow cells from the back of her hip bones and transfusing it into my blood stream. The stem cells from her bone marrow will eventually make their way into my bone marrow and start making new blood and marrow cells and a new immune system. In order to make room for the new bone marrow and immune system, we will have to kill my own through a chemotherapy and immunosuppressive drug regimen. This will be given to me through a port in my chest that I will have for the duration of my hospital stay.
Hospital
I will be admitted to Sloan Kettering on Friday, July 8th. My husband, Sully, and I have met with my transplant team a few times, and they are some of the smartest, most professional and most compassionate people we have ever met. This hospital is truly first class and the best in the world for this procedure. I can’t believe we are lucky enough to live a mere 30 blocks away. I’ll post the schedule for the treatment plan in another post. But here’s the Cliff Notes version: I’ll be in the hospital for 3-4 weeks, which includes receiving treatment and recovery time.
Possible Side Effects (Treatable)
During my time in the hospital I’ll be in a private isolated room with special ventilation to help prevent infection. Since I will have almost no immune system, I will be at risk for developing all types of infections and the resurgence of old ones (never did I expect to get Chicken Pox again after my bout at Christmas 1986.). I will also be feeling the effects of the chemo a couple days after it starts, so fatigue and nausea (I have never spelled that word without help ever in my life), among other things will also be on deck. The especially concerning one is something called Graft vs. Host Disease (GVHD). This is where Nan’s bone marrow cells think they are still in her body, and my body is foreign, and attacks it. Sounds scary, but most of these side effects are temporary and highly treatable. My doctors will be looking for and anticipating every side effect imaginable and try to beat them to the punch. I talked to the hospital pharmacist the other day who told me there are loads of cool drugs I can request to make comfortable, help with nausea (Word helped me again on that one) sleep, anxiety, or anything else. I made it very clear that I will not be a hero. I plan to take full advantage of the hospital’s controlled substance arsenal. They told me to!
Possible Side Effects (Not Treatable)
Unfortunately, the reality of chemotherapy is that there are some side effects that are not avoidable. Like most chemotherapy patients, I will very likely lose my hair and my ability to conceive children naturally. Because we caught this early, we had time to do a few cycles of IVF and were able to freeze some excellent quality embryos. The things doctors can do these days are truly incredible. Though this is not how we envisioned starting our family, we are lucky that we had the time and resources to come up with a backup plan.
As far as the hair goes, it sucks, but it will grow back. I’m told it will start coming back about 3 months after chemo. It will be jarring to lose it for sure; I have always had long hair and have always loved it like that. But it is a temporary thing. I just ordered a beautiful wig and it’s really difficult to tell it’s not my real hair. Though I just told you all, so there goes that. Also, all the money I’ve spent coloring my hair over the last 20 years does not even add up to the cost of this wig. Thank baby Jesus that my insurance company will be reimbursing me for some of it.
100 Days
You might be wondering why this blog is named the way it is. It’s because the 100 day mark is a turning point in the recovery process.
For 100 days I will not be able to:
-Work (luckily the people I work for are the absolute best)
-Be in crowded places
-Be around sick people
-Eat restaurant food
-Eat anything not within the restricted diet prescribed to me (nothing raw, or medium rare, no cold cuts, no lettuce [I’m really not upset about this one], no fruits or veggies that could contain dirt or contaminants, and most food needs ot be cooked within an inch of its life. You get the gist. I see a lot of grilled cheeses in my future which I’m not mad about.)
After 100 days I should be able to do most of the above. And I should start to feel a little better. And I will hopefully be able to attend 2 weddings which are very close to the 100 days mark (fingers crossed!). I have been told not to expect to feel totally better until about a year or so. And while I fully expect to keep this blog up past 100 days (unless I start becoming uninteresting again), I thought it was a good name. Plus it rhymes, which is the real reason.
How You Can Help
- Donate blood and platelets if you are able. I have already received 20 transfusions and feel just awful about taking that blood from other patients. I always assumed the blood I donated went to car accident or gun shot victims. You know something sudden and violent. But after going to the hospital so often for appointments, I see the same people there week after week waiting for their blood transfusions. That blood is keeping them alive and in this world with their families. And when I am in the hospital, I will need blood, and the donations that people selflessly give, will literally be keeping me alive.
- Sign up as a bone marrow donor at bethematch.org. They will send you a kit to do a check swab, super simple. Most bone marrow donations are made via a process which is similar to donating blood, no surgery involved. There are so many people out there who desperately need a bone marrow transplant and who are not lucky enough to have a sibling donor like I do.
- Get a yearly physical with a CBC (Complete Blood Count)!! I assumed because I attended all the health fair events at my job, worked out regularly and ran a marathon that I was perfectly healthy. And that is clearly not the case. I don’t even know how long my bone marrow has been failing because the last time I had a CBC done was in 2009! I only went to the doctor when I was sick.
- Follow my blog and share it with your friends and family so that they can also be reminded to do the first 3 things on this list.
How Am I Doing?
Well, I physically feel totally and completely fine and normal. I mean I get out of breath pretty quickly when I work out (low hemoglobin) and I bruise a little easier than your average Joe, but other than that, really, I’m fine. It almost makes going into this that much harder, because I feel so totally normal. Sully and I were laying on the beach and eating lobster in Montauk 4th of July weekend (the picture above is from this weekend), we were biking and wine tasting our way through the vineyards of Napa and Sonoma just 3 months ago. We are fine. I’m fine. But, I’m not, obviously.
We have some trying times ahead and it can be difficult face head on, but it’s so much easier because I’m not facing it alone. I am married to the greatest man on this planet, and he is by my side every single step of the way and making laugh every day. I also happen to have the best family that has ever existed (it’s OK if you think this about your family too). And the same goes for my friends who I know will do anything I need whenever and wherever I need it.
Thank You
Thank you for reading this and for caring. I know you may not know how to react or what to do or say. And please know that I get it. I really get it. So if you want to reach out, please do, but if not, that’s fine too. Or maybe just follow along here on the blog or a like post here and there, and I’ll know you’re there. Whatever it is, I appreciate it.
Lots more posts to come. Please come on this adventure with me!