Symptoms & Side Effects
I’ve officially been home for a week now and it’s been great, but I feel like crap. This was the part of this journey I was most nervous about - just feeling sick all the time. It’s like you’re constantly carsick with a low grade fever and achy all over - ALL THE TIME. It’s sometimes challenging to fake it through a text, so I apologize to everyone for being short this week. I just wish I could jump out of bed in the morning and feel good enough to play with my kids, but my mornings typically consist of me making my way downstairs about 6 or 7 and immediately taking a pain killer along with my 5 morning pills, drinking some green juice, and heading back to bed. There I lay back down in bed and try to relax while I wait to feel better - sometimes this process takes a few hours. Then I might be well enough to go downstairs and lay on the couch. This is the bulk of my daily routine - at least on the days where I don’t have doctors appointments. I typically feel better in the afternoon/early evening so at least I have that to look forward to throughout the day. Thank goodness Eric is working from home now, because I don’t think I would even be able to take care of the kids in my low energy state.
In addition to the nausea, my biggest side effects for now are neuropathy in my fingers and bone pain from the daily injections. First for the neuropothy - so far it’s just in my fingers, but I know it’s also likely that I’ll get it in my toes too. Turns out, chemo causes all sorts of fun side effects and this is a pretty common one. Right now my finger tips are all tingly and numb. It’s very annoying and painful - like pins and needles. I can’t open small containers or zip lock bags and my fingers get cold very easily. It has something to do with damage that the chemo is doing to my nerves. Oh and sometimes the feeling returns after chemo, but it may not.
Now for the bone pain. I had heard this was a thing before I started chemo and wasn’t really sure what bone pain would feel like. It’s hard to describe, but for me feels like having growing pains all over or like every bone in your body is recovering from a brake. At night, when there are no distractions, it gets worse - or at least harder to ignore. I feel like with each heart beat I can feel my whole skeleton throb with pain. This side effect is caused by the shot that I get everyday to boost my white blood count. As soon as my white count starts to go up I can stop the shots. I was really hoping that I would get good news today about that - but no such luck. The average number of white blood cells is between 4,000-11,000 (per microliter of blood). It’s common for chemo patients to drop to ZERO if they don’t take the booster shots. Especially in this COVID time, it’s critical that my white count stay up because we’re all at a higher risk of catching something - but with no immune system I wouldn’t be able to fight it off. When my blood was drawn on Friday it had dropped to 2,200 but they hoped by today that it might be getting better. Today my white count was 600! So for now I have to stick with the shots - and the bone pain that comes with that. I’ll have blood taken again on Wednesday and we’ll see where we are. Good news is that my potassium levels are all back to normal - thanks to a serious increase coconut water, avocados, beans, and lots of spinach.
Okay - now about my hair. I was fully prepared to shave it off this past weekend, but I don’t think my hair was quite ready. I don’t think it’s falling out enough yet. It’s not coming out in patches or clumps so I think I can wait another week. I’ve asked some other cancer people through social media that I’m now following - and they said it was more like 2 weeks when their hair started falling out. I know the day it does start coming out in clumps it will be very traumatizing, but for now I’m choosing to wait until it’s clear that I’m going to lose it. In the meantime, we bought some nice clippers and I got to practice on Eric and Harrison who are now sporting much shorter hairdos.
I also wanted to say thank you to so many of you who have sent meals, and groceries, and gifts! We certainly aren’t going hungry in the least. I’ve gotten so many cards with words of inspiration and compassion and generosity. I’m still so blown away by the outpouring of support from so many people. It’s so humbling to hear how my story has touched so many of you and how many different people are thinking of me. I truly believe it all helps and I hope you’ll keep it up as time goes on for me. This is just the beginning of this terrible journey. I have at least 3 more chemo infusions to treat my current cancer and then possibly 3 more as a preventative treatment.
More good news this week is that my oncologist is planning on letting me chemo at home for my next cycle. It will certainly be weird to be here with the red devil being pumped into my veins, but it has to be more comfortable here than at the hospital. Since my chemo bags run for 24 hours each over 5 days, that means I’ll be going to the hospital every day to change out the bag - they already had the pump sent to my house. I think Eric has mixed feelings about it - just because of the possible side effects during the infusion. I’m sure this means no skin-to-skin contact for that time too - you know, because of the poison. This whole thing is icky and gross and I wish it would go back to normal. It’s hard to think long term at the fact that I won’t feel normal for a really long time. I think I’m starting to forget what feeling normal even feels like. I’ll start the next cycle on Monday 8/10 - so that gives me 2 weeks from today to rest and relax - I’m really hoping that my white count starts going up and I start to feel better. I’d love to be able to read a book without getting nauseous or do a puzzle with my kids without having to lay down after 10 minutes. Thank goodness for all the true crime podcasts, terrible reality TV, foot-rubs from my mom, and unlimited chocolate shakes. Also thank you to my husband Eric who is the best dad and husband I could ask for. His patience with me and the kids while he works from home and takes care of all of us has been amazing to see. As guilty as I am that he ended up with a sick wife, I sure am glad he’s mine.
See Pictures Below of Just Some of the Delicious Meals we’ve Received & Our New Couch so I can Rest More Comfortably
