This week I had plans to make delicious meals like grilled buffalo chicken sandwiches, to go out with girls from work for dinner, tackle the mounting pile of laundry in my closet, practice yoga, and enjoy the hot weather that’s finally hit New England. Instead, I’ve been at the Brigham since Sunday night. Instead, I’ve been lying in a hospital bed almost continuously for 4 days. I spiked a fever on Sunday night after getting home from spending time with my dad and Bumpa for Father’s Day. Halfway through our attempt at watching Frozen, we were packed and on our way to the emergency room. After getting blood taken in both arms, a new IV put in, x rays, urine tests and a CT scan done, I was on my way to 4C, Room 56 (could’t even get into my resort 7D). Worst. Sunday night was scary. Really scary. I couldn’t stop the bad thoughts from racing through my head. What was wrong? Am I not responding to the chemo correctly? Am I having some sort of allergic reaction to all the medicine I’m on? Could it be that the leukemia has come back?? Unfortunately, I still don’t have an “answer” as all the tests that have been run have come back negative. But this is actually a good thing as it means most likely this infection is due to my extremely low counts and my body being unable to fight off anything because of all the chemo.
(this is a pic from the ER on Sunday night. I thought twice about taking it, and thought three times about posting it. But it is what it is. And that’s what a chemo patient looks like in the ER with a fever. #nofun)
My whole body ached, my head pounded, I couldn’t keep down any food or water and I could barely stay awake for more than an hour— I felt so physically and mentally exhausted these past four days. And then yesterday it all just sunk in and made me angry, made me grumpy. I had Mike hold a pillow so I could hit it as hard as I possibly could for about 5 minutes. I sobbed uncontrollably when the nurse was changing my IV line. Because it hurt? Yes, it hurt, but I cried because at that moment, as Coldplay of course was playing in the background (what’s wrong with me always listening to them when I’m sad), I just couldn’t take it, I just couldn’t take any of this anymore. I hit a wall. I don’t want people poking me and sticking me with things or ripping tape off of my extremely sensitive arms (a side effect of chemo is that your skin can become very sensitive to touch), I don’t want to feel like shit and be sleeping all day. I don’t want to be trapped inside while the sun is finally shining and the air is hot and inviting. I don’t want any of this, I kept thinking. I want my life back, as simple as that. It’s something I’ve said a lot on this blog, and something that has gone through my head probably 1000 times more. I just want my life back. So in between apologies from my nurse who thought she was borderline killing me from the sounds of my sobs, and Mike stroking my arm and saying everything’s going to be okay, I was able to pull myself together and stop the dramatics. Once she left, I beat the pillow. I had to. I had to physically get out how angry I felt. I’m obviously angry about this situation in general, but I felt angry about being here this week. I didn’t plan on this. This isn’t part of my “schedule.” Everything I had planned to do this week is pushed off now or cancelled. And that’s why this time feels so different. This is another interruption of the already-interuppted life I’m living right now. And I hate the interruption. The other times I’ve come in (other than obviously the first time) I’ve been prepared and ready for it. This time I’m just sitting here feeling ripped off, feeling sick and feeling frustrated. I’m trying hard to stay positive, to continue to try to enjoy everything I possibly can. Like going boating this past weekend to celebrate one of my best friends 25th birthday. Days like that make me feel alive and make me feel so happy and so thankful that I’m able to still enjoy a day like that. Because those days are special and I know it. But it’s hard, it’s hard to always come back to those happy moments when you’re feeling beaten. As much as I try, sometimes thinking of bright days ahead just doesn’t do the trick in the moment. But then again, I got to feel that sun on Saturday. I got to laugh. I got to feel the ocean spritz on my face. I got to dance. I got to enjoy myself for a day. That’s more than some people can say.
So as always, I feel a little better after this blog post. I needed to get out how kicked down I’m feeling. Because I’m not doing silly dances or arts and crafts this week. This week I’m struggling. This week I’m reminded that I’m in the thick of this horrible disease. I’m only 4 months into this long journey but I’ve still come a long way and I have a lot to be proud of and thankful for. There will be more rough weeks ahead, that’s for sure, but there will also be days like Saturday, on the boat with good friends and good food. That’s what will get me through.
Back to resting and getting rid of this fever.