Jun 22, 20237 min read

The Halfway Point of Taxol!

Its been a few weeks and I wanted to see how my body would react to the Taxol treatments. Right now Im at the halfway point of Taxol, round 6 of 12 weekly chemo treatments. Only 6 more left! So as I sit here getting my infusion #6 let's catch everyone up...

I was told by my oncologist, Dr. Horkheimer that Taxol should be much easier on my body than the AC. He said to give a perspective on the strength of the chemos: on a scale of 1-10 , 10 would be the kind of chemo used for very aggressive cancers that you would only get in a hospital , the AC (red devil) that I had is about a 7/8 and the Taxol is around a 4. So that already sounded much better.

Dr. Horkheimer gave me a heads up on what reactions I may have. So here is what I was told I could expect and the responses that I've had so far.

HAIR LOSS: The AC Chemo attacked my hair follicles on my head, legs, under arms, and "intimate areas". As much as I didn't love the idea of losing my hair on my head I have gotten pretty used to my bald head. Not that I want to keep it but it is surprisingly very round and a pretty nice shape. I also have enjoyed the fact I haven't had to shave in MONTHS! SO Silver lining there! So, Annie what do you mean there is more hair loss, haven't you already lost it all? Well If you notice I hadn't mentioned the hair on my face.... This is the treatment where the eyebrows and eyelashes most likely will fall out. I held onto them for the first week but now the eyebrows have slowly thinned to almost nothing. Eyelashes are getting patchy as well. The weirdest part is that I actually look sicker without my eyebrows. I look like a cancer patient now. Thank god for makeup- I bought an eyebrow stencil to fill in and shape the 4 little hairs I have left. Im holding on to those for dear life...
HAIR GROWTH: You are probably wondering if I have any hair growing back yet.... we'll sort of. Its kind of in a Baby Bird stage, you know the time before the feathers come in. Little tiny hair that sort of growing on my very naked scalp... it's a positive sign. Personally I think it's the hair that I didn't lose to chemo that's growing back faster but heck I'll take it! Also FUN FACT I have a lot of freckles and birth marks on this round little head which I never would have know if I hadn't shaved it. 🤣 I found a birthmark on my scalp that matches my son. Crazy how genetics work! You can see a pic below.
NOSE BLEEDS AND NOSE RUNS: This is one that I was not warned about by doctors but it is a general chemo side effect (which others who have been through this gave me a heads up). I lost the hair in my nose with the AC rounds, which isn't something I would have normally noticed since I don't know how often we actually look up our own noses. I only realized how important that hair is when my nose started to run and there is no stopping it... it literally runs straight out of my face like a faucet. Plus, the skin within my nose is very thin which causes constant nose bleeds. Not like a fight club scene but always slightly bloody every time I blow my nose. So carrying tissues with me has become as normal as wearing clean underwear... you must always be prepared.
NEUROPATHY: This is a big concern! Taxol can cause irreversible neuropathy in your hands and feet. In order to try to prevent that from happening I have to have Ice Packs on my Hands and Feet during the Taxol infusion. I have to keep track of any issues that I feel in my hands and feet during the week to make sure I'm ok. I have had some spurts of numbness in my hands every now and then. Nothing continuous but we are keeping an eye on it. My feet have been ok so far. Fingers crossed 🤞🏽for the next few weeks.
WEAK, BRITTLE & EVEN LOSS OF NAILS: Chemo can cause issues with your nails, since like hair follicles the nail beds are a place that chemo damages. Taxol is a common one that causes nail loss and blackening of the nails. So far mine have been ok. I try to keep them painted and when my hands feel hot I use ice packs at home. I also keep them hydrated by using lotion all day. Im not sure if this is helping but its not hurting. Hopefully I will hold on to them because I really don't want to have nail pain on top of everything else.
BONE & MUSCLE PAIN: Taxol causes some bone and muscle pains. Well this one is a big one for me. My rib cage is in constant pain. My chest always feels tight and makes it hard to breathe. It's like wearing a tight bra and not being able to take it off. Ladies, you can understand. I also get pain in my muscles around my chest and arms. Each week I have been checked and my lungs are clear. It seems like I get inflamed around my surgery area after each treatment and the tissue expanders tighten and pull my muscles. So I'm taking ibuprofen to help with the pain. It's the worse part. I seem to always be in some type of pain.
FATIGUE / ENERGY: Since Taxol is less intense than the AC, I should be getting a little more energy after 4-5 weeks of treatment. Jamie said she got more energy after a few weeks and was able to do more with her kids. That's something I'm looking forward too. I've definitely had a few energy spurts but I still have a lot of body and mental fatigue. Dr. Horkheimer said it will take some time to get the AC out of my system. My body is definitely tired still and if I push it too much I'm down for at least a day. My stamina is very low and I'm winded very easily. The worst part is I'm so exhausted but I also have a hard time sleeping. Which brings me to the next exciting side effect....
INSOMNIA: I get steroid infusions with each round and one lovely effect from those is insomnia. It's a constant back and forth in my body. I want to sleep because my body is exhausted but my brain won't stop. There are nights when I stare at the wall for hours and don't fall asleep until 2am or later. Trust me when I say I have tried it all: cannabis sleep chocolate, unisom, cannabis tincture, sleepy time tea, Benadryl, etc... Naps have become important if I can shut my brain off enough to take them. I will say that there should be a Amazon Chemo Code that gives those us us with chemo induced insomnia a discount on the weird shit we order at odd hours of the night. Of course I need a box of mason jars in a soft pink tone... Click Add to cart....
CHEMO BRAIN: This is a very tough side effect from chemo and its a very real one. I have been noticing the brain fog since around my 2nd dose of AC chemo. As someone who likes to be in control, chemo brain is extremely frustrating. I have a hard time remembering the right words for things, and it takes me some time to explain what Im trying to say. It's like a constant state of fogginess where I have a hard time focusing. It sometimes take me twice as long to comprehend things. What it feels like is similar to when you are drunk and your head feels slightly disconnected and you are trying to form a clear sentence. Thats what it's like all the time. Very medicine head feeling. Even writing has been difficult for me to focus on. My brain seems to struggle with regular conversations and I'm sure people have noticed (as I ramble and search for the right words). Luckily I have a wonderful village who have all had patience with me. Hopefully I will get my brain back once the chemo has done its job and left my system.
APPETITE: No nausea with Taxol! My appetite has come back and not just for mashed potatoes and a sub. This is by far the best part of this treatment and what has made it much easier for me. I can actually eat most things again. Although I still have my Jersey Mikes sub after each treatment. 😜 The down side is that the steroids also make me hungry so I do eat. Which has caused a little weight gain (boo!) and puffiness- Damn You steroids!
MENOPAUSE: And now to the extremely exciting side effect from chemo.... drum roll please.... Forced Early Menopause! Yay! Now the not getting a period is great but I also had surgery to prevent that part so Im not sure if it was the chemo or the surgery that stopped that. The part that is not so great are the The Hot Flashes and Night Sweats! Holy Shit they SUCK!! Women going through menopause should be treated as queens they are! Its no joke! My daughter calls my hot flashes my "Heat Waves" and my cold moments my "Avalanches". "Mommy are you having another heat wave? " I'm either freezing and bundled up or I'm striped down to my underwear sweating to death. No in between. It starts like a chill from my lower back and moves its way up to my head. It's fast and it's furious! There is also no telling when it will start. I was in Costco with my husband and had to stop and practically sit inside a freezer to cool off while I waited for it to pass. At night Im bundled under the covers and then the next second Im waking up taking off every layer drenched in sweat with the fan on full blast. And DO NOT TOUCH my skin when these start because I may snap and I am not responsible for what my body's response to you will be. So if you or anyone you know is going through menopause make sure to handle with care. Grab us a cold drink and feel free to fan us. But say NOTHING witty, this is NOT the Time and NOT the Place. Save those comments for another day if you want to live. So this is where Im at so far. I have 6 more rounds of taxol to go and then I move on to radiation. I'm not exactly sure what to expect yet from that. I spoke with Dr. Horkheimer and we won't start that process until I'm a little further along. I guess Im just ready to keep moving forward and heading to the finish line. Hopefully the next few rounds of Taxol will be easier each week.