Taxol Chemo #6 through #9
Taxol #6 went well and was uneventful on it's own.
But then life got complicated again.
I skipped a week of treatment between Taxol #6 and #7 because I was in the middle of a(nother) family emergency. I was in Southern Illinois with my mom, who has been dealing with an unexplained infection and was hospitalized in a really unfortunate ending to an epic summer cross-country camper trip. She went from driving her truck and camper across the country with my two kids to being bedridden IN said camper in Southern Illinois with fever and body aches for a month. Everyone (friends, family, and doctors) had assumed it was COVID and told her to quarantine, even though she tested negative 4 separate times! That meant the infection she had continued to grow untreated for several weeks while she weakened.
She was finally hospitalized when she noticed a bump on her chest and still had not improved after a round of oral antibiotics. She had surgery to drain what turned out to be an abcess in her chest and had about a million tests and scans done which have eliminated several things, but unfortunately have yet to provide any real answers for a diagnosis.
After a week in the hospital in Carbondale, Illinois she was moved to St. Louis University Hospital in Missouri for more expertise on her case. After an additional two and a half weeks in that hospital, she has finally been moved to an acute rehab facility in St. Louis. While we still don't have answers for how or why she got this infection or why she continues to have fevers, at rehab she will *hopefully* begin rebuilding her strength and mobility and finish off a 6-week IV antibiotic regimen and continued care for the wound vac on her chest to close up and heal the surgical incisions (we've been told that process can take anywhere from 1-6 months). All of this has been and will continue in St. Louis, where NO ONE in my family lives, including her, which has made it extra challenging and stressful. It's going to be a long recovery process, and I am her main caregiver (though my brother and aunt have been very helpful as well). I am happy and honored to be that for her, but I didn't really have room for that kind of responsibility on my plate this year. 2020 doesn't care.
All of that to explain why I missed a week of treatment because I was in Southern Illinois/St. Louis for a week and a half, then rushed back home to Birmingham to get treatment #7 before heading BACK to St. Louis for another 4 days, only to then rush right back again to Birmingham for treatment #8. It would have been nice to just have my treatment at the SLUH Cancer Center next door to where my mom was hospitalized, but insurance and care doesn't work that way....so I traveled.
I should mention here that my doctor has had no problem with me missing a Taxol treatment week here and there, and in fact that's very common for anyone whose white blood count drops too low between treatments and needs an extra week to recover. So I was not concerned about missing one week, but wasn't personally comfortable missing several or increasing my dosing to go in less frequently for treatments. Since things were going well on Taxol so far, I didn't want to rock the boat, even though my doctor said we could do a higher dose every two weeks instead if I needed to be out of town. I was worried about side effects increasing and wanted to avoid that as much as possible since I'd had basically none so far. Well, maybe not none, but very few and very minor and difficult to distinguish whether chemo drugs or life stress was causing it -- a little fatigue, occasionally having trouble catching my breath after workouts or walking up big flights of stairs, some very vivid dreams, increased appetite and slight weight gain (from a combination of steroids and stress eating, for sure).
After treatment #7, I was only home for a couple of days, so I spent the day after treatment working and painting signs before I left town again for an indetermined amount of time. I noticed while I was painting, that I was having trouble using my fingers and thumbs to pick up letters and to hold my paintbrush. It was subtle, and I was preoccupied, but I did notice what was probably the first signs of a Taxol side effect -- neuropathy -- the side effect I've been most concerned about from the beginning on this type of chemo. I didn't think much of it that week, since I had so much else on my mind, and headed back to St. Louis for more hospital time with my mom.
I did notice that throughout the following week my hands and elbow were hurting much more again, cramping up and having joint pain. My feet were also beginning to hurt more, the plantar fasciitis in my arches was acting up again, and the balls and heels of my feet felt bruised and sore. I began having trouble during my workouts with some of the faster running and side-to-side transitions that didn't used to be an issue and even more trouble gripping and holding onto dumbell weights than normal. I assumed that was from the several extra hours per day on my phone and texting, and from jumping and doing HIIT workouts on concrete and hard floors (instead of that lusciously bouncy Burn floor). And ultimately it's entirely possible that's all it was causing those ailments -- I just can't know for sure.
I've gotten tired of masked photos, so the strategy is this -- get a long drink of water from my giant water jug and THEN take my weekly photo before I put my mask back on for the rest of the treatment session.
But, after Taxol #8, I was definitely having noticeable numbness, tingling and pain in my hands, fingers, toes and feet, particularly on the Saturday and Sunday immediately following that treatment. I may have freaked out a little bit--or a lot. Neuropathy can get worse with each treatment and while it *can* improve, my hands are my livelihood and the thought of 4 more treatments hindering my hands and feet even more made me very nervous....especially since IF it was reversible, that could take months. I had an appointment with my oncologist the following week (right before Taxol #9) so I planned to visit with him about what the best plan moving forward would be.
Also, after #8, apparently I missed my window to fall asleep before the steroids they gave me kicked in at full speed, because on Friday night I was awake until after 5am! That was the first real insomnia bout that I've dealt with so far, but that can be really common. I did end up sleeping about 4 hours that Saturday morning, but then stayed awake the rest of the day and continued to feel the amped up highly caffeinated steroid effects through Monday. Unfortunately I wasn't able to channel that energy into anything productive because I was having trouble focusing and trying to rest and de-stress (not work), so I finished up watching the rest of season 4 of This is Us instead.
Then there's the hair situation. Though I've heard that you are supposed to continue to lose your hair on Taxol, that has not been the case for me. While it's not exactly growing fast, my hair is definitely growing. It's not the right color or texture yet, and maybe it'll need another buzz before that comes in, but it's definitely still thick and not patchy, so I'm very grateful for that!
Now I feel like instead of looking like a cancer patient, I look more like I chose this no-nonsense haircut. Frankly, that's exactly the kind of haircut I've needed this summer with all that's been going on in our lives. Even though it doesn't quite fit my personality or look like I'd like it to look (I mean, I had some good hair pre-chemo), I've appreciated the fact that it's been slowly coming back. To think I expected my hair loss would be the most difficult thing to deal with this year! Since I shaved it all off back in May, I've barely given it two thoughts since I didn't expect it to be there at all, and by the time life calms down for me to really notice it, it might be time to try and put some kind of style into it!
Which brings us to Taxol treatment #9, which I'm currently receiving as I write this. I had an appointment with my oncologist today and when he saw my head full of hair and heard my concerns about increasing neuropathy in my hands and feet, he decided two more treatments would be enough. He seemed a little surprised that my hair had grown so much, and mentioned that because I was on a low dose of Taxol and it wasn't causing any hair loss, it wasn't going to be productive to reduce my dosage and continue through the rest of the 12 treatments. Instead, he said he wanted to do today's (#9) and next week's treatment (#10) and call it complete.
I can't say I'm too disappointed in that cancelation in 2020.
So, now I will hope that the neuropathy doesn't increase much (or at all) in the next two weeks, and then we'll go back to discussions and planning with my surgeon for the next phase of treatment--surgery. I've learned not to put firm dates or expectations on anything this year, but if you're looking for a ballpark timeline, I'd say it's *possible* I'm looking at having a double-mastectomy surgery and the first phase of reconstruction as early as the end of October 2020 -- just in time for Breast Cancer Awareness month.
Overall, I'm feeling pretty good about how all of this has gone and is going. With all that has been happening in the world and in our own family, I just haven't had time to worry about whether the cancer is still there, if it will grow, if it will come back, if treatment is working, etc. I've just been following the treatment program and letting the doctors and drugs do their thing without worrying about it. Maybe that's ultimately a blessing. I've had no time to fret about that because there have been way too many other things to emotionally respond to this year--
- a pandemic
- my father passing away
- job insecurites for both Ben and myself
- my mom in the hospital in a state none of us live in with a mystery infection that can't be diagnosed
- COVID policies and procedures dictating our lives everywhere we turn
- a staggered in-school and virtual hybrid schedule to navigate.
As many people have said to me with a look of shock and pity and empathy over the past several weeks -- That's a LOT. And it is. But thankfully I'm not carrying it all myself. Somehow, some way, God will get us all through all of this and he'll take care of us exactly how we need to be cared for. We've seen it already in about 1000 ways, so I'm trusting that will continue, and I'm not worrying about making sure it looks the way I think it should. It's just not my show to produce.
I joked to several friends recently that if I'm supposed to learn that I'm not the one in control this year, consider the lesson learned!
3 comments so far:
Hi! First of all, I would like to say to you that I hope you re well today and always! You re so strong! Let the strength and positiveness be with you through all the course of your life. And just be there for the more easy and light and happy days that I wish you ahead... :) I m currently on weekly taxol..Today I had the 11th one (which was actually the 10th one as I lost one due to a problem I had). Next week will be my last one. I too have some neuropathy issues..Since the 7th one I had some constant numbness at the edge of my fingers...after the 9th I had also some pain in fingers...both in hand and feet...almost constant tingling in feet etc...I m afraid of it and think to ask doctor not to have the last one...I have mentioned these before to him but he does not give much time to me to discuss and just says that this will go away....So I wanted to ask has your neuropathy gone away now? Also wow for your hair...mine too grew during taxol..but for the time being it has come out quite patchy, thin and with also many whites..i alao lost most of my eyebrows and eyelashes...so I have an empty look..some eyebrows came out back also white...I had very thick brown hair...and very thick dark brown to black eyebrows...I hope this is temporary...we will see...so this is what I wanted to ask..thank you foe reading this and hope (if you can) to find the time to reply..once more take care and be well...lots of love and positive vibes from Greece! ...Jina
The neuropathy did go away fairly quickly after I completed Taxol. It never got REALLY bad -- pretty much as soon as I started noticing it, we decided to stop. I don't notice any tingling or pain in my hands or feet anymore. Numbness, maybe...but hard to say if that's from Taxol or from years of typing and painting! :)
And yes, my hair is definitely coming back thick and dark and curly (like it was before)! It just takes a LOOONG time to grow back to the length I want! It'll get there, eventually...
Jennie Stoves said:
Yes, you have had an unexpected exhausting year. You’ve hardly had time to think about anything for long before something new came along that required your attention. I’m so thankful that you have been able to travel and be with your family and take care of those issues. My prayers have you in them all the time. Much love to you, Ben, Ayla and Paxton. Blessings to you all.
Post new comment