The first few weeks of being in the hospital were seeming like a breeze (well as much as fighting for your life can feel like a breeze, I guess). But then SMACK all of the sudden it got rough real quick.
I’ve had some issues since I’ve arrived. My heart rate goes really high whenever I get up. They weren’t that worried about it because it’s pretty asymptomatic. I don’t get dizzy or light-headed but sometimes I can feel it racing and showering can be difficult but for the most part, I don’t feel any different. I just am hooked up to a Telly Box (I call it my Telly Tubby) that monitors my heart rate. And all the nurses come running in when I brush my teeth because I can go up to 190. Even though it doesn’t affect me, I’d still like to know why it’s going up so high. I’ve had approximately 1 million EKGs, but they’re all laying down so it’s normal. So after 3 weeks of the doctors just guessing what it could be, the nurses started to push back and that’s when I was like oh maybe I should care more about this too. They thought it was my PICC line tickling my heart so they pulled it out a bit. It didn’t work. Then they pulled it out a little further and it actually went down! For like an hour. Major bummer moment. So then a couple days later the completely removed the PICC and it did nothing. At least they tried something but it wasn’t the answer. Then I had to get labs drawn for a few days without my PICC which sucks because I’m a baby with needles and have tiny veins. But it’s back in now.
So back to square one. My doctors said they’d be in touch with the cardiologists and I was like that’s fine but they haven’t seen me. So the nurses started recording every time my heart rate when up, which was every time I stand. I’d had all the heart tests before starting chemo so they knew my heart was ok it just has this abnormal heart rate. I think because the nurses were now so involved I was more conscious of it and I could start feeling my heart rate rise. One night I was eating dinner, seated, and the nurse ran in saying it was high. I wasn’t even up! So I had a full-on panic attack. They had just told me I was going home this week and they hadn’t done anything for my HR! I couldn’t breathe or settle and then they brought in an x-ray, another EKG, and surprise surprise – a cardiologist. I should have done this weeks ago. They still don’t really know what’s happening. Could be the anemia combined with treatment or maybe I’ve lived with this without knowing. But they started me on a medication that’s supposedly going to help regulate it. But they’re still not that worried about it. So I’m not going to either. It’s just scary not knowing why. Can’t wait to get rid of this telly box though. I slept on it the other day and now I have a pain in my back. Salt in the wound.
Then I had probably the worst night of my life last week. My legs have been hurting. I think it’s a combination of being in bed so much (I feel restricted because of the HR issue) so I haven’t been moving as much as I probably should plus my counts are going up quickly and sometimes you’ll feel that in your bones(?) – I forget what the doctor said. Anyway, one night I woke up in EXCRUCIATING pain in my knees. It felt like a crazy stabbing pain in both my knees out of nowhere. Thank goodness my nurses were sweet baby angels that night. I was clenching the side of my bed and a full face of tears and they did all they could to alleviate my pain. They gave me a pain killer that didn’t work so we had to wait for a couple of hours before they could try something else. We also did an ultrasound, labs, and an X-ray and everything looked normal so it was yet another mystery. They finally were able to give me some fentanyl which was fast-acting but also wears off quickly so it was painful off and on all night. It was horrible. I didn’t sleep a wink. The next night it only hurt when I got up but was ok when I laid back down. It’s been ok since. Just more sore than anything. I just feel so weak. It’s weird to be so strong one day and then completely unable to walk to the bathroom on your own the next.
My tingly fingers have turned into numb hands. It’s all the way down my palms now. It’s really hard to type and use my phone (so ya’ll better appreciate this post LOL).
I have to get a shot in my belly every morning (see above comment about being a baby with needles) which SUCKS. It looks like I have a ton of freckles around my piko, but they’re baby bruises from the injections.
Ok enough of the bad shit, GOOD NEWS! I’m going home tomorrow (or Thursday) depending on how tomorrow goes. I have a bone marrow biopsy and lumbar puncture and have to lay in bed for an hour and then can maybe go home! Which is funny because I’m moving this weekend and my house isn’t ready. They originally told me I’d be going home next Wednesday so I was not prepared. I’m trading in my beautiful mansion with a pool, a panoramic view of the ocean, and a house full of homies for a little beach cottage with a small view of the ocean.
With COVID still happening I’m going to have to live in a bubble for a while so I can’t go back to my house so I’m staying with a family friend who has a gorgeous house on the cliffs at the beach for a few days. They’ve been quarantining and it’ll be a peaceful oasis for me to rest while my loved ones pack up and move all my stuff for me. How lucky am I?
I can’t wait to get out of this bed and hospital and eat allll the foods and maybe get some actual sleep one of these nights.
My body is responding well to treatment and my counts are coming up nicely. I’m hoping this is a good indicator of how the rest of treatment will go. Prayers for that would be appreciated – mahalos. They want me in the clinic ASAP for phase two. I’m still not sure what that looks like but here we go.