Deja Vu

I swear I’ve been here before - sitting in a hospital bed for way longer than expected, desperate to go home. Oh wait, that’s because I have been here before - literally. Why haven’t I learned that doctor’s best guesses are about as accurate as contractors when they say that job will only take about a week? When I checked in to the hospital last Thursday 12/10, I was so optimistic having just heard I was finally in remission, and now I feel like I’ve been beat back down. Even though I am technically “cancer free”, I still had to complete 3 rounds of in-patient high dose methotrexate chemo to complete my treatment. My oncologist and I went over the timeline several times to ensure I would be out and feeling good for Christmas and he assured me that going in on the 10th of December would allow plenty of time for the 3-5 day recovery and I’d be home by the 16th at the latest. So why is it now the 20th and I’m still chained to this bed? Oh that’s right, it’s because doctors may be well intentioned, but they are not Psychics - that and my body is a piece of shit. 3-5 days quickly became 7 days which lead to 10 days and still my body has refused to recover. I think it’s safe to say this aggressive chemo treatment plan may have been too much for me. With each new drug and each new round I’ve battled new and seemingly cruel side effects and I am officially over it. I understand the desire so many patients have to quit - I get it - I’m there. I can’t go through this again.

So let’s back up - I was admitted Thursday 12/10 and after tests and x-rays I began the round by getting the high dose methotrexate at about 10pm. It ran for 4 hours and since then, I’ve been getting pumped full of sodium bicarbonate and leucovorin to get the methotrexate flushed out of my system. Only thing is that this process has been incredibly slow for me. Turns out the methotrexate damaged my kidneys and that was causing my levels to still be high long after they should have returned to normal. It’s common for this drug to effect the kidneys or the liver so this wasn’t all that alarming, but we weren’t expecting the recovery to be so long and I’m hoping the damage done isn’t permanent. Every morning I’ve gotten blood drawn at 5am to see the methotrexate level and I was told I’d get to leave once the level dropped to 0.10. As of yesterday it was 0.14 down only from 0.17 the day prior - but I really think today will be the day. This is the first day I’ve been able to sit up in bed - quite an improvement from the last 10 days. I have never been more sick than I have been the last week and a half. I thought these rounds would be a piece of cake compared to 100+ hour red devil infusions, but I couldn’t have been more wrong. I’ve been more nauseous that I’ve ever been in my life, had intense migraine headaches, severe chills, body aches, fevers, and so much barfing. I’ve barely eaten anything since I got here and I went a full 7 days without a bowel movement too - that’s got to be some sort of record, right? I’m still dealing with a lingering headache, but the other side effects have finally all subsided. They pushed my labs for today to noon to try to give my body that much longer to cooperate and with any luck, I’ll be getting my discharge papers by 2 or 3 today. Fingers crossed.

It’s been so hard to be away from my family especially this close to Christmas and I’m sorry to say there will be some gifts that will be late and my cards will just be getting in the mail this week. I tried to do so much before I left for the hospital, but I really just never imagined that I would be here for this long. And it’s not just being trapped here, but being so sick as I’ve been here has been too much to handle. I don’t ever want to feel that sick again and I’m not sure how to process the fact that they want me to do 2 more rounds of this. They’ve already let me know that they’ll have to come down on the dose seeing how poorly my body reacted, but I’m hoping they’ll also delay the next round too. I’m not mentally prepared to walk back in here in another 10 days to do this again. I need more time to feel good, more time at home, more time hugging my babies.

And as for the ghost haunting my hospital room - there was an eerily cold draft from time to time, I felt several bumps from behind my bed, I definitely heard footsteps from above even though I was on the top floor - but I must say in a time of COVID with no visitors allowed, it was nice to have the company.