A Loss for Words

I've been procrastinating on writing this post. Like, really procrastinating. It's not that things are going horribly or that there's any bad news...it's just that I haven't been able to think or speak or write or sound like myself. That's really tough for me.

Chemo brain has definitely set in. I have a very hard time finding words I want to say. As a labeled "grammar nerd" by many close people in my life, this hits me really deeply. While not a very cool flex, I loved my vocabulary. :) I'm known for comebacks, puns and spotting grammatical errors in record time. I am none of those things right now, and for the first time in my treatment journey, I'm absolutely terrified. I know brain fog is a common side effect...but what if it never goes away? I've never feared the cancer would kill me, but what if it's killing my brain cells, and I'm a completely different version of me when it's done?

My current chemo drug, Taxol, was supposed to be the easier of the two and is actually proving to be harder for me. I'm experiencing Neuropathy in my lower body and my hands. My toes have been numb since I've started, and I experience shooting pains that feel like burning and cutting after treatment for a little less than a week. I have to have ice packs on my hands and feet at chemo to try to slow the blood flow to those areas and to try to prevent lasting neuropathy. My skin has become more sensitive, and I'm fatigued. I gas out pretty quickly. I don't want that to sound like whining; I still think physically, I'm doing decently in comparison to so many. AND I ONLY HAVE ONE MORE CHEMO TREATMENT LEFT NEXT WEEK!

Even though I'm struggling a bit, I've been surrounded by so much good. My husband keeps fresh flowers in the house because he knows that makes me happy. He's also continuing to do a really amazing job at holding down the fort. Our kids got to spend Easter at Grandma and Grandpa's with all the family while mom recovered, so we got some nice one-on-one time and finally caught up on Stranger Things. I've had someone with me at chemo every single appointment and more offers than I had chemo appointments. My kids still can't shut a light off after themselves, but I am really proud of how much they've grown and how sweet they have been with me. My family has been incredible; my sister has had our schedules organized way better than I could've with a "normal" brain this entire time. She also has a way of helping that calms me more than anyone else. My parents have been here more times than I can count, and my mom has organized A LOT. My brother didn't sleep for over 24 Hours so he could join me for chemo once. (He DID fall asleep briefly on my hospital room floor, which will surprise no one who knows him.) My friends have given my kids countless rides and meals and kept their lives full of fun. I had an aunt fly in to see me and another one come stay at my house too. My cousin has hooked me up with the coolest custom merch. I have a great village.

They have a surgery date set for the end of May, when they will remove whatever is left of the cancer or the area the cancer used to be in. I will also be having a tandem surgery at the same time for a hysterectomy because my tumors are hormone-fed. Eliminating the ovaries should help reduce the risk of recurrence.

Now...if you don't want to hear any weird female details, skip this paragraph. (I tell you this part because it's relevant to what I have to say in the next paragraph.) Because my tumors are hormone-fed (both estrogen and progesterone), I will have to be on a sort of "hormone blocker" for a minimum of 10 years after I complete my treatment. These pills mimic estrogen in the body (but are NOT estrogen) and can cause the uterus to grow additional sporadic cells, which have a much great risk of developing into cancer. I have had two bouts of pre-cancer Squamous Cell Carcinoma on my cervix, one requiring a removal procedure. My OB/GYN says that Uterine cancer would be a step worse than Cervical cancer, so clearly the best option for me is to have a full hysterectomy, not giving those cells a chance to grow anywhere.

Even given all my history, and the fact that I'm already on the operating table and all the costs that entails...it's still a fight and a game to insurance. Most insurance companies (especially the Blues...thankfully I do not have them as my carrier right now) want to cover ONLY removing the ovaries in this case. They deal with one problem at a time; so even though the likelihood of me developing another closely-related cancer is pretty decent and could be completely prevented with two more minutes on the OR table, they'd prefer to just deal with it by paying for another operation when that happens. It blows my mind. This isn't the only situation; traditional radiation would damage more of my body because of the position of where my affected lymph nodes are at in relation to other anatomy...and there's so many insurance hoops to jump through to make proton radiation happen. (And believe me, I wouldn't leave my kids for a month and move to Rochester to get it if I didn't have to.) Insurance pushed back on an anti-nausea pre-chemo drug my doctor was using because in dumbed-down terms "most people don't get that nauseous on that chemo

drug." Welllllll guys, I have a pretty good history with nausea too.

What bothers me is that I have super smart, advocating providers who push so I can have the best treatment plans...but what about those people who don't? Insurance limitations are dictating healthcare decisions that providers should be making. I know this isn't limited to just cancer treatment. I'm also not trying to play the victim here, but there's a very real disadvantage to being a woman in this system because a lot of people making the decisions have no perspective on, well, being a woman. There are populations that have it much worse than me. I'm aware that there are so many people that play a part in both the downfalls and successes of healthcare; I just please ask you to think about all these situations that you'd never imagine yourself (I sure didn't) or your loved one in whenever you get a vote to help choose who will be making these decisions above our heads. Representation and perspective matter.

So now, to wrap up on a positive note...I'll again mention ONLY ONE MORE CHEMO LEFT! I'd say we're going to celebrate next week, but I know I'll be sleeping for most of it. :)

Easter

Evie is sharing her hair with me now. :)

My new customized kicks thanks to my cousin, Katie!