Chemus Interruptus II
The sucky thing about chemo is…
OK, I know that in the last post I just made friends with my chemo. And I know you read the title of this post and are like, “What? Chemo’s sucky? I never knew!” However, I have new information. See last Friday I posted a picture on Facebook of my little family after the 5K race, a fundraiser for my son’s elementary school. My son, 6 ran/walked his first 5K and I ran/walked it with him.
THEN, we ran the 1 mile FunRun hand in hand. The day before I worked out (weights, elliptical) and I was feeling good.
But 24 hrs after this picture, I was in bed with a fever of 102, mouth sores, achy bones, fatigue, sore throat, chest congestion, sinus congestion, constant ringing in my ears… you get the picture. I didn’t feel rosy. The thing is, I’m writing this from bed still. Today, 4 days later my fever finally broke. I left it in a puddle on the bed. I was supposed to start Chemo Round #4 on Monday, but instead was informed that I am sick because I am neutropenic – again. This time my white blood cell count / neutrophils dropped from 2300 to 700 in a week’s time. I ran a race on Friday and by Monday I am so ill because my immune system can’t fight off anything right now.
So, here it is… the crappy thing about chemo. It is so unpredictable. When my body is not violently reacting to it, I forget the chemo is there – still pulsing through my veins. So, I’m completely caught off guard when I then have a chemo-related effect. It’s not just that chemo makes me feel sick, but the chemo shreds my immune system so I catch actual viruses. I am sicky sickety sick but I have to get welly well well well by next Monday so that I can start chemo again. I have to try my best to get well so I can inject platinum into my veins (no kidding – cisplatin is platinum!). My poor little immune system is taking a beating. And it came out of nowhere – from one day to the next. I feel like I’m in some sci-fi movie or video game where I’m running along healthy, and some invisible guerrilla fighter shoots me with a cryptonite-like laser that freezes me and morphs me instantly into sickety sick sick sick. I did wake up with a sore throat on Saturday, and I did go to my son’s opening game of his baseball season, and it was 47 degrees and spitting. BUT I dressed like I was going to the arctic replete with an irish sweater, north face winter coat, pashima, hat, and blanket. I’m sorry, but I just couldn’t miss that game. Miss his first coach pitch with my husband coaching? Not an option. My husband John was coaching the same game in a long sleeve t-shirt with the team jersey over it. He’s fine. After 20 minutes in a steaming hot shower I still couldn’t warm up and – Boom!- there it is, a fever. And by the next day… all the other fun stuff listed in the cancer center’s guide to neutropenia. If it’s listed, I got it. My doctor said it was the neutropenia that got me sick, not the sick that got me neutropenic. And it’s the chemo that got me neutropenic.
By yesterday (when I started writing this post) I had no voice, and my cough sounds like a gravely foghorn. The ringing in my ears (a potentially permanent side effect of this chemo) leaves me in a fog as well. Like when your flight lands and your ears haven’t popped yet so you feel like you’re walking in slow motion until they finally pop and every sound is loud and brassy. Mine just won’t pop, but I’m putting my energy into this state not being permanent. This was always part of the deal, though.
I’m on antibiotics in hopes of preventing a secondary bacterial infection, and pneumonia. If my #s are up on Monday I’ll start chemo Round #4, and 24-72 hrs. later I will receive a shot of Neulasta. That should boost my white blood cell count in my bone marrow. It’s not a nice shot – it leaves you with bone and muscle aches for @ 5 days but if it gives me more white dots, I’m there. I fear that this post is turning into a bit of whiny, woe is me. As we all know there are MUCH worse things going on in this world right now. What I am experiencing was always part of the deal.
So this is an update. No great moments of wisdom. There is so much more I want to write about, so much that just wants to spill out of me. About the robin on our back deck, my son’s new communication system for his mute mama, how my husband could learn a thing or two from Lassie, and the man on the side of the road who taught me a valuable lesson. But, for now my windows with clarity and energy are small. One thing at a time. Right now that thing is – back to bed.
Holding u close as u weather thru this time dear amazing friend. Sending buckets of love and sunshine to you!
Always good to hear your updates. May your road to feeling welly well well be short. And although painful, may the effects of that Neulasta last-a a long time-a. Sending love!
Bed is where you need to be – at least for now. Rest and regroup. You’ve got a big job to do, and a lot of people are counting on you to do it right!
Allison: All our healing thoughts and earthly good wishes are with you through this “journey”. Life’s unpredictability slaps us upside our heads and reminds us that not all is clear sailing. Your keen sense of embracing it all will serve you well moving forward and Bob and I wish you strength and stamina in the days and months to come. Be well…keep smiling your beautiful smile!
One of our most important jobs as human beings is to care for one another and take care of one another. So if it’s our responsibility to care for others, then SOMEONE’s got to be the “caree” once in a while, and tag, you’re it! Rest and relax, my friend. Much love is coming to you from me and everyone in my family to you.
You are constantly in my thoughts. Even though you are a tough fighter, I know that is wearing you down. Do your best to take good care of yourself. My heart hurts for you. Remember that I love you.
Allison- Words can’t even convey the sympathy I feel for you right now so I won’t try. However, I have to say your writing has sucked me in and made me a peeping Tom. Just so you know, I mean that as a compliment. Unfortunately, I’ve known folks with cancer and who’ve gone through chemo but I didn’t know what that journey entailed. Your writings have given that glimpse and its pained me and thrilled me at the same time. Although I love your current writings, I must say I won’t be disappointed when this chapter ends and it’s all about robins and baseball:)
I’ve been following here and there on fb but you and your challenge are constantly in my best thoughts. Keep using your “small windows,” making them larger, and continue to gravitate towards your beautiful smile, as Ellen said above. My thoughts are also with John and your family as they support and strengthen you through this.
Allison, you are so inspiring. Always were back in grad school, and your positive spirit shines through even during this yucky phase. Keeping you in my thoughts and prayers, positive energy floating your way through the stratosphere. Much love, Amy D
You must wear a mask my friend. My sister has a box of them. Love you. Get better , rest rest.
Hey Al, It’s Christm_actually the first day of Hanukkah for me, in 2016. Was thinking about people who mean a lot to me, but have been out of touch for some time and you immediately came to mind. I haven’t seen you in almost 13 years and it saddens me. I had a stroke last summer and have recovered with some remaining detritus of the attack.I have gained 30 unneeded pounds and have yet to recover my fine motor function enough to recover my guitar and bass playing skills, but at least I can work as a counselor without much trouble. Your humor, bravery, and even your fear anxiety and anger have been therapeutic for me as I muddle through physical,occupational and cognitive/speech therapy. Anyway, I m finished with formal therapy,but have a lot of work left to get my weakened left sideup to par, and my left hand to do whst it’s told with a guiar pick in it. Such is my world. I’d love to hear from you and even better, talk to you. Can we make that happen ?