Everything Hurts and I’m Dying
Ok not really, but it’s one of the responses I’ve given a lot lately to those “how are you doing” texts. It’s hard to explain intense pain and every time I try, I feel like I’m just complaining too much. But it hurts - it hurts a lot - it hurts a lot all of the time. Pain is all I can think about during the week after chemo. I know it’s been a while since I’ve posted, but I blame the pain. Some weeks I just don’t feel up to writing anything and last week was one of those weeks.
I ended round 5 on Friday 10/16 and was feeling so exhausted but relieved to be done. After my last post where I was having major issues with the pump for the first few days of that cycle, I finished the round without any more issues. It was nice to have an uneventful ending to the round and it felt so good to come home on Friday and get to relax without the pump and poison. I can feel an immediate difference once I get disconnected - it might just be adrenaline, but either way, I always feel great on Friday night and this time I felt great for most of Saturday too. Eric and I took the kids to pick out their Halloween costumes and then we even went to lunch where we could sit outside. Knowing that the terrible chemo side effects will be returning any second, I’m always eager to enjoy as much time as possible. Saturday was also the beginning of my shots regimen. Since it’s been taking so long for my white blood count to go back up, my oncologist increased the dosage of the shots yet again where I now get 2 shots each day for 10 days. Unfortunately I could really feel that increase. I was quickly back to that feeling like I’d been hit by a bus. It’s hard to get out of bed and makes it impossible to stand for more than a few minutes. This time I was also feeling a lot of chest pressure and heart palpitations.
Last Monday when I had my first blood draw after round 5, my white was still high at 14 (normal range is 4-11). So I was really hoping that since my whites were starting high that maybe they wouldn’t drop too much - especially since we’re now doing 2 shots a day. Unfortunately, my bloodwork on Thursday showed they had dropped lower than ever before to 0.7. It’s so frustrating that my body isn’t working as hard as I need it to. With each round, it has taken longer for my blood count to return to normal and longer for me to feel better. I felt so sick all week - like that carsick/hungover feeling with severe bone pain pulsating with every heartbeat all week. No energy, no will to get out of bed or get anything done, too painful to get comfortable or get much sleep at all. Ugh and the hot flashes! I swear those are no joke - just dripping in sweat constantly. We’ve kept the AC at 68 all week just so I’m comfortable enough not to sweat through my pajamas. I always thought I would never go outside without something on my head, but I’ve been going out bald more and more just because it’s so damn hot with a hat or a wig on. I don’t even care about the people staring anymore. On Saturday I woke up with a slight fever and just tried to rest all weekend continuing with my 2 shot a day routine. It really took till Monday before I started to feel like myself again. This was also when I got my next blood draw and saw that my white has now bounced up to 22. Finally out of the woods. I’m finally done with my 10 days of 20 shots, my levels are normal, and I’m feeling better. It’s the same ol’ cycle each time, but for some reason, I’m always hoping this time I’ll recover faster - but chemo doesn’t work that way. With each round, it takes longer because each time I’m still recovering from the last round when the next round begins. I get weaker and weaker with each cycle.
Today I had a call with my oncologist to discuss the next 3 months. I will begin my 6th and final round of outpatient REPOCH this coming Monday 11/2 and ending Friday 11/6. Then I’ll get a PET scan the week of 12/3 - I asked why we’re waiting so long for the scan and he let me know that it can take 4 weeks from the time chemo ends to see the full result that round had on the tumor. He’s expecting to see a totally clear scan - also known as NED (No Evidence of Disease) - the greatest acronym to any cancer patient. So my treatment plan after that will all depend on the results of that scan. But since we’re only thinking positively here… when I get my cancer survivor status officially declared, then I will proceed to those dreaded next steps we talked about last time. I will begin the 1st of 3 rounds of inpatient chemo on 12/10 where I will be spending about 5 days in the hospital each time - again with no visitors because of COVID. This will all be the preventative chemo in the hopes that the cancer won’t come back. I will be getting just 1 drug during this treatment - methotrexate - which will take 24 hours to drip in and the rest of the time spent in the hospital will be spent monitoring my vitals, curbing any major side effects that may arise, and waiting for my blood count to be normal. With the way my body has responded to each round, he’s expecting that to take 3-4 days. I’ve had methotrexate once before in my treatment - when I was in the hospital for round 1 and they did a lumbar puncture and drained some of my spinal fluid and filled it with this particular drug. I remember last time it gave me an intense headache that lasted for weeks, so I’m assuming that I’ll have a similar reaction this time too. I’m devastated that I’ll be spending another 15 nights in the hospital over the next 3 months, but I know this is necessary - it’s all a part of this journey that is saving my life. This 9 month detour from my life will hopefully be a distant memory someday soon. In some ways it feels like it’s all gone by really quickly, but also 3 more months feels like forever. I was only diagnosed with cancer 118 days ago, started chemo 103 days ago, and have received a total of 25 days of chemo so far. Just a blip of time in the scheme of things. For today, I’m grateful to be feeling better with more energy each day. I’m also looking forward to my good weekend which will include Halloween and our monthly date night.
Thank you for everyone that continues to check in on me and send cards and gifts or stop by for a socially distant visit. I know how loved I am and how many people are thinking about me and that has made all the difference in the world. I know some of you have struggled with what to say or what to do or how to help and that’s okay too. We’re all dealing with a lot lately - the world is crazy right now - I know I’m not the only one dealing with something major. I know I have the biggest support system and the best friends and family anyone could ask for. I’m learning that when someone gets cancer, it effects everyone around them too - it’s not just me. It’s easier for me to look at it this way too - that way I’m not alone in this - we’re all going through this together - and I don’t want to let all you down.
