Last year I was diagnosed with a blood disorder... a blood cancer called Polycythemia-Vera. I had my 1st phlebotemy (blood dump) last May. Since my body makes way too many red blood cells, one of the only ways it can be treated it is by going in every few weeks and having a liter of blood taken out. I suppose I was trying the method of "ignore it and it will go away," because after that appt I just never scheduled a follow up. To be fair, last June Norman and I both had spinal cord stimulator implants, and that device gave me a lot of relief in my legs. Fast forward to this May; however, I realized that I couldn't wait and needed to get an appointment. I was hurting pretty badly, and my stimulator was not giving me much relief anymore. My blood cell count ended up being really high (again), and the pain I had experienced previously was back and it had gotten progressively worse. I did a phlebotemy in May, and my follow-up was scheduled for mid-September. My doctor cautioned me that my hematocrit level had been way to high, and if I started hurting she wanted me to come in as soon as I needed to. Along with this, though, she warned me that at some point we may need to discuss treating this with medication. I really did not want to deal with a daily med, but I was in so much pain that 3 weeks ago I broke down and went in to have another phlebotomy (which took my leg pain away in just a couple of hours). As much as I knew it was coming, I still struggled to wrap my head around the fact that I was sitting in front of my oncologist discussing chemotherapy. I'm not sure if I just detached a little bit, but I was sitting there, staring at her, looking as if I was paying attention, but my brain had checked out. Thank God for Norman being there, because he remembered everything and asked the questions I would have wanted to ask.
I have only taken the medication for a few days now, and so far I have not experienced any bad side effects(whoops...spoke too soon). I started writing this over a week ago, (here I am again...the 3rd try at getting this thing written), and I am struggling with a few things now that I didn't early on. I just pray these won't be long term side effects. I have had to take a slower approach to starting this, because the first problem I encountered was the feeling of being completely and utterly sloshed. At first, I thought it was a completely hilarious side effect. I mean, a pleasant buzzy feeling with no hangover is not the worst way to feel considering this is the warning label on my medicine bottle...
So I stopped taking it for a couple of days to clear my head, (which also included me realizing that I was sick sick. Not med related sick.) So last Sunday I ended up in the ER with pneumonia. Fun. Supposedly this chemo won't make all my hair fall out, but it can thin your hair a whole lot. I'm trying to stay positive and look on the bright side, but it's pretty freaking difficult sometimes. I haven't told anyone outside of my my kids, my mom, my brother & sister-in-law, my best friend Misty, and then I think Norman has told his best friend. And that's it (except for me talking about it here). I guess we shall see how this turns out, huh? The very odd, very non humorous thing about all this was when I went to my 1st appt last year, I had been a bit taken aback when I realized that this was the office of my dad's oncologist. And then when I realized that my doctor had actually been my dad's doctor... that was a bit overwhelming. All I could think about was how this doctor wasn't able to help my dad...I just hope I have a better outcome.
So yeah... here I am trying to finish up this blog and I don't even know how. I woke up this morning starving, but food is not an option right now because I am so nauseous. I remember one of the appointments I went to with my dad, I remember him saying the worst part about his cancer was the nausea and inability to eat. I felt so badly for him to miss doing something that we all do without even thinking about it. But now I get it.
Back in the summer I had been going to the snowcone stand every time I went anywhere, and I asked Eli and Norman to pick me up a couple for me when they were out. Let me tell you that $5 snowcones can add up, so my precious husband bought me a whole snowcone maker for my birthday. But let me tell you that the irony of this is wild. What was purchased as a way to give me snowcones until I got tired of them, has turned into a necessity. I don't even want the syrup. But that ice...it's saving me. It helps me get water in my body that I can't stand to drink. And I eat a ton of it when nothing sounds right.
I'm not sure why I'm writing about this. Maybe it's a way of helping me process everything. I don't know. Maybe because I'm not ready to disclose this experience to people I do know. Maybe because this is a way for me to come to terms with things without having to hear the, "I'm so sorry, what can I do for you?" messages. For whatever reason, some people need the constant prayers and attention, but here I am wishing I could just be invisible and move about my life with nobody noticing.
I suppose I will go ahead and post this... otherwise I'll let it sit here another 6 months requiring change after change. For anyone who still reads these, thank you for sticking around and not bolting.
**I finished this last week, but I couldn't bring myself to actually post it. This week has been a crap week with crap feelings, crap nausea, and a crap outlook. But I'm going to post this, bc I'm alive and sometimes I suppose that has to be enough.
Thanks for sticking around.
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