Tomorrow I have to go in for another bloodletting (phlebotomy). I hate it, mostly because it is a reminder of many things best left forgotten. It will be my fourth time in 44 days. I go too much if you ask me, but you didn’t and my doctor is insistent. I was diagnosed with Polycythemia Vera in January, which basically means my body is making too many red blood cells. They started me on two drug therapies in addition to taking 400 to 500 milliliters of blood from me every other week until my hematocrit is “normal” and then I will still need it to maintain that normal. The need so far is too damn often. This is a for-the-rest-of-your-life kind of thing. It isn’t about the needle poke; it goes beyond each jab and each moment and boils down to this.
1. The Place
It takes place in an infusion center. I understand why it does. The concept is basic enough, donating blood sans the donation. But it is much more involved than that. My husband, who is a universal donor and therefore gives blood as often as he can (he did this before I knew him, yep I married one of the good ones) was shocked at the procedure, what it entailed and the additional steps involved. You don’t want to do this at just any blood facility, so this is where it has to be done. But from July 2009 through April 2010 I practically lived in an infusion center unless I was an inpatient at the hospital. Infusions of complicated drug cocktails, plasma exchanges, dialysis and chemo – I was a frequent flier. So, the first time I walked into that room to make the appointment my husband said the look on my face went from stoic to stricken, and color drained away. When I saw the chairs I was too familiar with, the people I would soon join, what I was returning to, it was too much. Many of the memories I had to revisit and experience again because of my book, but this was someone asking me to go back completely, experience it again physically and not for the sake of my art or passion. I felt like I had been dunked in a tank of ice cold water and held down, unable to surface. Yet, I played it cool because in order to get through it you have to be on autopilot. It was a costume I had put away, but one that I knew exactly where it was stored. It was only a matter of time before I would need it again.
2. The Effects
It feels like dialysis. True it only lasts thirty minutes (at least as far as the actual bloodletting) but what happens immediately after and the days after that is dialysis all over again. First of all, I am about 110 pounds and 5 foot 4, not a large person and my body seems to be oversensitive about everything. When they take my blood everything is fine until it isn’t. Without warning, my blood pressure plummets as in my blood pressure from last time went from 114/79 to 47/23 in under twenty seconds (you know they monitor that like crazy before, while and after they do this treatment). Any idea what that does to a body? The hottest of all hot flashes, clammy skin, the urge to expel any stomach contents (and if you don’t have any, bile will do), and a monster migraine for starters. Most people lose consciousness while I just teeter on the edge. I’m badass like that.
I do everything I can do to prevent this, lots of fluids (over 110 ounces of water), a large meal before, high in sugar and protein, and I chug 3 cups of orange juice right before. Apparently even then, my body likes the attention of six nurses and doctors crowding around me as my body crashes for a few minutes. (The up side, if I began charging viewing fees I could probably pay off my students loans in a few months.) Out of the three treatments so far, I have only been able to finish one of them before crashing and once you crash, they don’t finish. You are done until next time.
In terms of after, it is an adjustment where I must admit defeat (and I don’t do that so well) because I feel like I have been hit by a bus. I am a very special kind of exhausted and everything hurts, from my head to my toes. The first time I tried to defiantly soldier on, proving this wouldn’t slow me down. I did housework, baked cupcakes and walked our dog. My body paid for it for a week! So, after that first time I decided that the body always wins, so I may as well listen and get it over with. After a treatment I know that when I get home I am officially laid up, even getting myself water is off limits (thank goodness for my husband). I would like to pretend that it is simply for 24 to 48 hours, but it is actually 96 to 120 hours (4 to 5 days).
I am the kind of person who needs to stay busy. When I am sick I clean the house. When I have a headache I work on my writing or editing or something else for work. When I have surgery I plan on how to make sure I still meet all my deadlines, surgery be damned. So allowing my body five days of nothing is much easier said than done. For someone like me, it is next to impossible.
3. The Souvenirs
This is the most petty, whiny, ‘get-a-hold-of-yourself’, small picture reason why I hate this: it leaves a scar. With all of my operations (fistulas, heart, brain, stomach) I have scars on a significant part of my body including all of my limbs… except my right arm. At least until this. Yes, it is vain, but I am human and I liked that I had at least one appendage spared of a physical reminder of everything. My right arm is the only arm they can use to do this, however, which means a scar has already faintly appeared. I don’t care who you talk to, track marks are not cute and the look was never ‘in’ and for me they are now permanent.
Okay, whine officially over and onto the bright spots with this.
1. Say Chemo!
If the bloodletting didn’t work they would resort to more chemo (which is ironic since this a complication of the chemo I had a few years back in the first place). I feel incredibly fortunate that it is working and yes it means my three complaints are something I have to grapple with, but chemo would be so much worse… There aren’t words. And this is one reason I am happy.
2. The Early Bird
They caught this early, whereas nearly everything else I have ever had they catch too late. I feel confident getting ahead of something before it leaves me in the dust; my case deemed a lost cause by many. It is a good place to be. I don’t think about the future in terms of what this diagnosis means or can mean. Instead, I see this as one more story of something I handled. I am that person who always comes out on top. I don’t know any other way.
3. The People
I am surrounded by wonderful people who love me and something like this is just a reminder of the large support system I have in place. You never think about it when you are supporting someone else, but friendships are two-way streets. When you’re rich in friends and people you love and who love you, you are in the best place one can be.
It is obvious that while each list is comprised of three parts, one drastically outweighs the other. Perhaps this was a rant (I hope not), but I look at this as a way to remind myself that I may not like the situation I am in, but overall I am very, very fortunate and when I pass out tomorrow in that chair in front of my audience I hold on tightly to this reminder. Lucky. Fortunate. Loved. Lived.
Posts like this remind me of how strong you are.