I probably have no business sharing my experience so early in my chemotherapy, but hopefully I've gotten through my worst days with my first round, and I thought I'd record the experience and some solutions I've already found to be helpful.
To be honest, I don't normally post so much personal medical experience here, but I have found others' sharing to be invaluable as I have gone through this. Even if someone reading these posts never experiences cancer first hand, reading others' experiences can be helpful in knowing how to be supportive to friends and family who may go through these things. People may not open up about what they're experiencing because they don't want to complain. Or some symptoms are just plain embarrassing. No need to probe someone to open up when they don't want to, but I suggest assuming they're doing a fair amount of suffering in silence if they don't elaborate.
To be absolutely clear, this is only my experience. Everyone's chemo is selected and scheduled for their specific cancer, and is dosed according to their weight and tolerance. While I hope I have some helpful thoughts here, I can only write about my experience and how my body reacts. I stated (to my doctor) from at the outset, my biggest fears are nausea and vomiting, and any amount of lasting peripheral neuropathy.
The black things on my hands and feet are cold therapy mittens and socks to try to ward off peripheral neuropathy. There is some evidence (mostly within clinical settings) that this helps, so I figured it was worth trying. I purchased my set and extra cooling inserts off Amazon. The danger of nerve damage grows with each infusion, so I'll hold off reporting anything further about these until the end.
***I've come back here to report that after finishing four chemo infusions (over a period of a little less than three months), I did not develop any peripheral neuropathy. I've heard that an acquaintance who had the same medicine and protocol that I did developed neuropathy and that would have been before these mits and socks were available. Would I have developed neuropathy if I hadn't worn these? I have no way of knowing, but I'm going to go out on a limb and say I think the cost of these, and the little bit of discomfort I had wearing them (through only one of the drug's infusion) was worth it. I would absolutely do it again if I had to do it over.
My chemo regimen is Taxotere and Cytoxan every 21 days for 4 rounds. If all goes well, I'll hopefully be finishing up the first week in October. In addition to those two drugs, I take an oral steroid (Dexamethasone) the day before, then it is infused again directly prior to my chemo, and the day after chemo I take the oral steroid again. Also infused into me prior to the chemotherapy is Aloxi - a strong anti-nausea medicine. At home, I have Compazine and/or Zofran to take for nausea if needed.
The infusion went without a hitch. I had no reactions as they ran the different medicines into me, and five hours later I was packing my bag and heading out. It wasn't until I got outside I realized I was lightheaded. I found out later there is alcohol in at least one of the medicines, and while I probably could have driven, I was glad Hub had taken me and was driving us home. It was a long day.
I didn't learn until I showed up with no sleep the night before that the steroids I was on were responsible for my sleepless night. I didn't feel anxious, I just couldn't sleep for more than a couple of little cat naps. I figured I'd catch up on my sleep while the infusion was going, but there was much too much going on, education happening, and possibly because of the kindness of everyone who entered my room, the day of the infusion I had a general sense of well being that lasted through most of the rest of the day.
The day after my first infusion, I did find myself easily agitated, but knowing it was the steroid having its way with me helped me get a grip - eventually. I felt a little jittery the second day, but I felt well enough to go to a Bible study at a friend's house just down the road. The other things that affected me pretty quickly was that my throat started to feel sore, my tastebuds started acting up, and my mouth became seriously uncomfortable. I didn't expect this to happen so quickly, but fortunately, I was prepared. At the first symptom that felt like thrush might be setting in, I started rinsing my mouth every few hours with either TheraBreath (mild mint) mouthwash, or a mixture of water, salt and baking soda. The ratio I used was 1/4 tsp salt, 1/4 tsp baking soda, 2 cups water. I tried a stronger concoction as per my doctor's instructions, but I found it irritating. I think using these two mouthwashes helped stave off my beginning chemo mouth from turning into something awful. To be honest, I didn't feel like eating for several days after the infusion, it was so unpleasant, but hunger finally forced me to put something in my stomach each day. Almost a week later, while my tastebuds are still wonky, the uncomfortableness in my mouth is manageable. The occasional sugar free TheraBreath dry mouth lozenges and sugar free Jolly Ranchers help too.
Other things that happened... On day 3 post chemo, my legs became very painful and achy, and fatigue set in. I also developed some pretty serious gastrointestinal distress. Whew. Chemo belly may sound cute, but it's misery that lingers. And changes by the day. I haven't figured out quite how to keep that from happening, but now that it seems to have settled down a bit, I have it as a sort of goal to try. I'm just not sure it's preventable, because chemo is known to mess with the gut's microbiome. Oh, and to add insult to injury there's an ugly spotty, random "rash" on my torso. I'm guessing it's nothing serious - it doesn't itch or hurt - but I noticed tonight on the info they gave me, they do want to know about rashes, so I'll be letting them know tomorrow. I did feel well enough to go to church today. I know eventually I'll probably be laying low as I progress through my rounds of chemo, so as I feel like it, I want to be present for things like church, and well... just normal stuff. Goodness, after the months of diagnostic tests, biopsies, surgeries, now chemo... I want some normal in my life!
Something that is surprising me, and I think it's worth mentioning is, even though some of the symptoms may not seem to be any worse than one might experience in other scenarios in one's life, I have found that fear is very present and ominous while in the thick of the discomforts. We're all familiar with achy bones when having the flu, and who hasn't experienced gastrointestinal distress, just as examples? But the fact that these symptoms are produced by having infused toxins into one's body holds the potential for a sobering amount of worry. Worry that permanent damage could be happening. Worry that each infusion is going to cause greater discomfort and pain as the sessions are repeated. Can I do this over and over? And ultimately, worry that one can go through this and cancer can still reoccur. It also doesn't help that multiple symptoms are showing up at the same time, whereas in the normal course of common illnesses, we don't typically deal with multiple difficult symptoms all together. None of this is to garner sympathy. Believe me, I'm good on that count. It's truly to help anyone who hasn't experienced this to "get inside the head" for just a bit of one who is.
I am so thankful to be going through this at a time when doctors know better how to manage side effects. I am thankful for all who've gone through it before me to pave the way and share their experience. I am thankful that I only have to do this 4 times, instead of 6 or 8 or 12 times! Even in the moments of fear, overall I am thankful, both for what is, and what isn't.
I would be remiss if I didn't give huge kudos to the staff at the infusion center. And my oncologist and his nurse. He makes it his practice for him and/or his nurse practitioner to visit each of his patients in the infusion center - when they get infusions on one of his days at this location. And the nurses that attended to me were so kind and helpful. Last Monday was an "educational" day, so the rest of my visits will be a little shorter, and may be quieter. It's a nice place, where everyone has a separate "room" closed off with a curtain. Something this introvert truly appreciates. The only negative thing was someone across the hall from me had their TV on so loud it was pretty disturbing. I don't know why they don't give each room a headset for TV watching. While I surely won't benefit, I'm going to make the suggestion. I ended up putting my ear buds in my ears and calling a friend for a good part of the stay.
So that's Round 1 down. Three to go.
Oh... and did I mention... Hubs has gall bladder surgery scheduled tomorrow. We're a pair, aren't we? Middle son is taking him and bringing him home, and fortunately, since I seem to be feeling better, I ought to be able to manage things around here while he's down for a bit.
Prayers appreciated!
Thank you, Loraine, for such beautiful, happy daisies!
