Coming to you sometime between Thursday and Friday from Georgetown University Hospital in DC — land of the waiters who take your food orders, beds that turn into full chairs (yes, you read correctly), tests where stat actually means, well, stat.
The fact that I’m here means this is an unplanned stay (boo!) although I will eventually transition care here.
Like everything in DC, this place has a storied history. Among other notable occurrences, this is where Reagan went after an attempted assassination. And if it was good enough for him, I bet I’m in good hands.
I slept much of Tuesday and until about 2pm Wednesday, all fairly continuously. I didn’t really have the strength to walk to the kitchen to get water. Lame. Called my dad and asked him to fly in, because it seemed serious. Long story short, my red blood cell counts and platelets were about half of the low side of normal. This is probably a reaction to one of the many, many meds I’m on — including the chemo. Again, lame.
The way you fix the symptoms is by getting someone else’s red blood cells, aka a blood transfusion. I was scared out of my mind, and convinced it was a surgical procedure, or they at least had to get thicker IV lines. But no, apparently, you can hang it just like a bag of fluids or medication, it’s just thick, like chemo, and red, not like chemo. A red like nothing else I’ve ever seen. Two big bags of — I’ll stop here before I get ill thinking about it. Or lose you entirely. Sorry.
I’m still not back to normal, but also don’t feel like standing up for more than 10 seconds is a marathon effort. This is actually a plus.
However, since the low blood cell count can cause me to be dizzy, have heart palpitations or simply fall from lack of strength, I’m not supposed to go anywhere myself without supervision.
I find it very frightening that this can happen all of a sudden, and get so serious. It also amazes me how much better I feel after one procedure, but it’s not something I could have gotten over the counter.
Fundamentally, we’re working on treating the symptoms, but not the issue, which is serious anemia, caused by the meds. I’m already on iron pills, but we may have to add more meds/treatments.
Don’t even get me started on how difficult it is to get IVs in me at this point (finite number of veins, people!) and how the one they put in got so irritated it had to be removed and they’re putting in a new one at 4am and want to discuss possibility of giving me a more permanent one that will last for six months which can also breed more infection and requires local anesthesia to install.
I guess I got started. Admittedly, a bit scared.
The ongoing lesson here, which I was told, but didn’t totally accept, is that this fight for the kidney has some serious meds with serious side effects. Not a rash or a cold, but low blood cell counts and cancer and infertility and other things that require hospitalizations. In an attempt to gain months, years, decades, this may be a rougher six months than I ever imagined, which could alter my life forever in truly horrific ways. I don’t see an alternative though. I made this choice, with complete information, and now I’m in it to win it. I just have to admit, despite being called “strong” all the time, there’s a lot more to it than I could have imagined. Color me just a bit scared. Because if I wasn’t, I’m living in denial.
Trusting in my doctors, support system and a positive attitude is the only way to keep going. So, here we are, and here we continue to go.
Calls (from any of you) and visits (if you’re around DC) are appreciated — you know how to find me for details.