current side effects

Hey Friends. I’m on the road with family. Instead of getting my eighth infusion, I’m in Jackson Hole, Wyoming. I’ll resume chemo next Wednesday. I know that some of you would like an update.

Here’s my head-to-toe assessment after seven chemos:

My hair continues to go buh-bye. I still have a fuzzy head, but I don’t have a discernible hairline. It’s really thin. Chemo wreaks havoc on your skin. My scalp is dry and pimply, which is so great. Not just my scalp, but my face is a bit of a mess. Pimples, dry patches, red spots. I’m absolutely reliant on concealer (boys: that’s make up). People say, “I hope you feel as good as you look.” Ummm…I think I feel better than I look, because I look-a-like poop.

My mouth feels perpetually like I burned it on hot coffee yesterday. It’s numb. Also, if I drink any carbonation, it feels like an explosion in my mouth. Can’t handle it. Here is something bizarre: I can feel hot spices, but can’t exactly taste them. I shared a Chipotle burrito bol the other day and kept checking in, “Does this have flavor? Or is my tongue not working?” I can taste sweet, but I want to keep sugar to a minimum (cancer likes sugar). I like my water cold, but I still drink my coffee hot. Anyway, I can still enjoy flavors, but not consistently.

I have a sore throat pretty often. That can be caused by thrush, which is a fungal infection in your mouth. Lovely. My doctor prescribed me Magic Mouthwash for thrush before she had a chance to see me. It’s repulsive. Directions are to “swish and swallow”. Ugh. I wouldn’t do that with water! It is disgusting. Turns out, my sore throat doesn’t appear to be thrush. We think it’s just allergies. So, not exactly a side effect of chemo, but that’s happening.

I’m foggy. I forget words. “Chemo brain” is a thing. These drugs are good at killing cancer and memory. I could also be foggy from thinking about the fact that I have cancer all the time. Oh and having four kids makes the brain tired. Who knows? I’m nervous about how I come across, but am a little too tired to care.

I need lattes to stay awake. Sometime after the fifth chemo, I started getting run down (for me). Generally the day of chemo and the day after, I have energy. That’s usually Wednesday and Thursday. By Friday, the fatigue starts creeping in. Saturdays and Sundays are the worst lately. By Monday evening, I start feeling like I’m coming out of the fog. It’s not so bad. I try to take short naps on the low energy days. But, because of kids, I have had five naps total in the last two months.

I really want to skip past this next symptom. But, because it might be helpful for someone, I’m going to be honest. I have what I’m calling “chemo belly.” Every third chemo infusion, I get a drug called Perjeta. A few days after those infusions, I really need to make sure I stay in close proximity to the powder room. It’s no fun, but it passes (see what I did there?).

My joints ache a little bit, but not too badly. And not all of the time. Just after I’ve walked a lot. Really, it’s manageable. And I just hiked a lot today and I’m feeling fine.

I have some numbness in my left-hand finger tips. Unilateral neuropathy. Usually, when numbness is experienced, it’s bilateral and also felt in the toes. It’s a common side effect that is temporary. If the neuropathy gets too debilitating–if I start dropping things or lose the ability to button buttons–they will reduce my dose to prevent permanence. Yikes. So far, mine is really mild.

So, there are many more side effects one can have, but these are mine. It’s not that bad. You probably don’t even feel that sorry for me anymore that I have cancer! Really though. I want to be honest with how it’s going. I want to give you an idea of what chemo can be like. There are LOTS of different chemo drugs. And everyone responds a little differently. So, if you know someone who is on chemo, you can ask them what drugs are being used and what side effects they are experiencing. I wouldn’t advise assuming anything about chemo or cancer and I would definitely advise asking questions.

While I’m on the subject, when someone tells you they have cancer, you don’t need to tell them everything you know about cancer (unless you run a cancer research lab or something!). Ask questions. Let them know you don’t know what to ask. Let them know how you honestly feel. Hearing a friend is scared that I might die won’t be the cause of my death nor will it ruin my day. Maybe don’t list all the people you know who have died of cancer though. That’s probably not the most helpful place to start. Rather, ask them what they’ve learned so far. Or ask them if they want to talk about it. I’m in the “I think about this almost constantly and need to externally process, but don’t want to dominate the conversation” camp. Some people with cancer (or with any crisis) might want to talk about something else. Everyone is different. And I know it’s really hard to know what to say or what to ask. I hope this helps. If you have any questions for me about me or anything else, they are totally welcome.

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5 thoughts on “current side effects

  1. Most of the time I’m not, but sometimes yes, I am scared you might die. But what I know is your life and my life are no more or less in God’s hands then they were on that day we had coffee—our first coffee date that happened so recently and so long ago, before you rolled over in your sleep and woke to a lump. Lumps and close calls on the freeway and not knowing where one’s child is for one excruciating minute slap us awake to our essential helplessness, which terrorizes us…. and hopefully, quickly morphs into a feeling of dependence on One who can be trusted…. In those (for me, lump-less) moments, may I be reminded of you, and how you keep getting awakened, friend…. and how it may not always morph so quickly. And may I always pray for both of us to remember His thoughts are always on us and His intentions toward us are always good…. I’ll breathe and let the terror pass…. and breathe in peace…. and breathe out thanksgiving. Thanksgiving for so much, not the least of which is this: I am keeping you. Forever.

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