I started writing this post on Friday, thinking I had enough energy and these horrible side effects were gone…umm, not the case. It’s now Saturday night and I’m going to take a whole new approach in going through the days since treatment. I knew rounds 4, 5 and 6 were going to be the worst, each one possibly being more difficult than the other until the end. No problem, I got this…only when you’re in the midst of it, that’s the last thing you think. Today (Saturday), I had some tears because I’m so over it – tired of the nausea, tired of this horrible taste in my mouth that comes from I don’t know where, tired of being able to feel every teeny, tiny joint in my body aching. I’m sharing this only to document what the days after treatment feel like for ME…nothing more, I do not want anyone to feel sorry for me, that’s not the reason behind this post. (Keep in mind, everyone reacts differently)
Tuesday – Day 1 After – I usually start to go downhill around noon time the day after, I’ve never been one to get the burst of energy from the steroids, I pretty much gradually start to feel yucky. And sure enough, that would be the case this time around.
I run the last of my errands in the morning on these days and then take a nap. By 10pm on Tuesday my body ached…back and neck were the worst, I knew this wasn’t going to be good, this normally didn’t happen until a few days later. No problem, I’ll keep the nausea medication going (I take 2 different pills that are supposed to last 6 hours, when they don’t, I alternate medication every 3 hours) and add in the Tylenol (I haven’t taken pain killers since surgery, I’ve been fortunate to manage the aches with Tylenol…or, let’s be honest, I try to ignore them).
Wednesday – Day 2 After – 10:35am “Mom, I need you to get my wallet, I need to call the hospital” – I could barely get that sentence out, I was not well. Got the number, called my nurses and Amy answered “Amy, it’s Randalynn…” before I could say anything more “Hun, something’s not okay, are you alright?” Me: “No, I think I need some fluids and something else, I don’t feel right.” “Come in now, we’ll have your chair ready for you.”
Now, here’s the challenge…how was I going to get from the bed to the car…I didn’t know if I’d make it, but I did – one foot in front of the other. I knew if I made it to the car I’d be able to go by wheelchair the remainder of the way. I forewarned them on the phone, I may get sick, so if you can have something by my chair, that’d be great.
A woman I’d met a couple of weeks back was so confused to see me, she knew my treatments were on Mondays…I told her I wasn’t feeling well and needed fluids, steroids and more anti-nausea meds. Amy and Elizabeth moved quickly and had me hooked up and the meds. The hardest part, not throwing up during the accessing part. The alcohol and flushing they have to use to access my port comes up through my throat and out my mouth, it’s disgusting on a good day, I really can’t describe it.
I think I slept the full two hours I was there, got back in my wheelchair to head back to the car, to head home to sleep. I was able to force myself to eat a little and drink some, I did NOT want to go back on Thursday for more meds. Accessing my port alone is enough to make me throw up and I did not want to do this two days in a row.
Thursday – Day 3 After – Laying in bed I thought I was managing just fine…then I started to move and I changed my mind. I felt better than Wednesday, but the nausea was overwhelming. I called my nurses and told them I was okay and didn’t need to come in, that I’d call the hospital and go to the after hours facility at Siteman, worst case. After Wednesday, they made sure I knew where I needed go if I needed anything. I continued to eat and drink what I could and we managed.
The body aches were in full effect and the one thing I haven’t mentioned yet are the hot flashes – remember, I’m in menopause at age 37, on steroids, taking chemotherapy. I fell asleep in my chair in the family room and woke to sweat streaming down my face and the back of my head. I HATE EVERYTHING THAT HAS TO DO WITH HOT FLASHES!!! The medication we’re trying doesn’t really seem to work, but I’m patiently trying to give them a chance.
In the past Estrogen hasn’t been recommended for women with Ovarian Cancer, but new research has been done to see what happened when women were given a low dose of Estrogen (I’m taking .5mg). What they’ve found is the women who took Estrogen actually lived longer. Why you might ask, because of the medical “complications” associated with entering menopause at an early age and the health conditions associated with this happening. Without the hormone replacement we are at risk for an assortment of things, including bone, heart and cardiovascular complications. So, I’m giving it a whirl…jury is still out.
Friday – Day 4 After – I HAVE TO GET TO OLIVIA’S SCHOOL TODAY! Olivia had her end of year “Writing Celebration” and I needed to be there for her, so what do my parents and Sonya do, they show up…they show up to make sure I’m there for the kids on the days they need me most.
The shower alone wiped me out, then trying to manage the nausea, and the one thing I wanted to make sure was that she couldn’t tell how awful I really felt (I didn’t think I looked too bad, all in all). Sure enough, I made it – the smile on her face was enough to get me through and she was so excited to share three of her stories with us that she’d written. I made it, that was all that mattered, I made it! Needless to say, I napped for the remainder of the day until they got home from school.
Saturday – Day 5 After – In the past, I’m up and moving on Saturday…like without any trouble. Might have some aches and pains, but it’s tolerable. Not the case this time around…I thought I was going to throw up everywhere (side note, I have not thrown up yet, thank the lord!).
Jaxson had soccer and he loves for me to sit at the one end and watch so he can race to me each time – I wasn’t about to miss this. Get your body to the soccer dome and sit your butt in the chair, you can do this. And…I did. I felt awful and there was no hiding it, no one really asked how I was feeling it was more “oh gosh, you don’t look like you’re feeling too well today..I’m so sorry”.
I got Olivia dressed for dance and then she was off to her friend’s house for rock climbing and a sleepover – something she was so excited about!! And I did it, I was able to get both of them where they needed to be, on time and in attendance. I was exhausted and felt awful, but we managed. I’m hopeful I’ll be turning the corner on Sunday (today)…stay tuned!
Here’s the thing about this stupid thing called chemotherapy, everyone is effected differently, everyone’s “cocktail” is a little different than the others, each cancer and stage requires something specific. So what may bother ME, may not another. How long MY side effects last, may be shorter than the next person. You cannot compare, and who in the world would want to?!? Am I a “hero” because I made it to where I needed to be this week? Absolutely not, I’m lucky…I got lucky.
So what is the worst part of this past week you might ask? I could say it’s the nausea, I could say it’s the aches, I could say it is the unimaginable exhaustion and not feeling like I’m fully present with Olivia and Jaxson when I’m sitting with them in the same room…but the truth is, it’s that I know I have to do this two more times and I’m scared shitless (sorry mom, no other way about it) about how much worse it’s going to get.
A friend of mine, Jo, commented on my Facebook post and said this disease is not for the meek and anything we can do to spit in the ugly eye of this disease is good for our soul! So take that, this crappy, awful, never want to see you again week – you may have knocked me down repeatedly, and made me cry, but you didn’t win and I’ll see you two more times…get ready for the “spit”, it’s coming!
And this is me today, honestly feel I’m turning the corner and it’s not a false alarm — ready to cheer (it’s more like yelling) for the Blues from my chair!! I know I have some visitors from Nashville who regularly read my blog, sorry y’all, I bleed BLUE!!! Let’s Go Blues!