Today we met with the man who will be taking care of business for the next several months, my medical oncologist, Dr Blair. While he told us what I expected to hear, that I would receive the (not as fun as a margarita) cocktail of ACT, I did not expect to hear the overall time-frame would be so long. The drugs involved in that, for those lucky to not already know from personal experience, are Adriamycin, Cytoxin, and Taxol. I’ll be getting AC every other week for 4 infusions, and then T weekly for 12 (count em, TWELVE) weeks. I hear that the AC is the tougher part for most people. As my onco put it, if AC is like being hit with a sledgehammer every other week, the T is (for many people) like a lighter tap weekly. On Wednesday, I will have a port placed near my clavicle to allow for the infusions and blood draws and the heroin to help me deal with all this without blowing out my veins. It’s an outpatient surgery, so just a local anesthetic and sedation. The following Monday will be my first infusion, and then I’ll return on Tuesday for a shot of a drug called Neulasta, which will boost my white blood count so I will be able to recover enough to do it all over again in 2 weeks. All of these things come with a laundry list of side effects that may or may not happen. Many of them can be pretty well managed with some medication, but some you just have to get through. I know the basics of what to most likely expect, but I’m trying not to pay an overly huge amount of attention to all of them, because it may not be an issue for me. Everyone handles this regimen differently. The one near 100% guarantee is that I will say goodbye to my hair, which I’ve been inching towards accepting, but I’m not gonna lie, it will be a gut punch.
My original plan had been to return to work on 2/21/17 after taking 6 weeks to recover from the surgery, and then just see how chemo went and whether I’d be able to work through it or not. However, I had assumed I would be on an every 3 week schedule. Going every 2 weeks, and on this regimen, there’s a good chance I won’t feel good enough for the majority of those 2 weeks to go to work. Unfortunately, I don’t have a job where I can show up when I feel good, and take off when I don’t. Well, I could in theory utilizing good ol FMLA, but that would involve taking a lot of unpaid time off if I did it that way. What IS fortunate, is that I have a job that allows for me to receive short term disability benefits, that pay out at almost 70% of my full salary. Soooo it makes more financial sense for me to extend the disability benefits rather than have to take a bunch of unpaid days, even though it seems silly to sit around at home on the days that I DO feel ok and otherwise up to working. Since my doctor seems confident that the toughest part will be this first AC section, that will span 2 months, I’ll extend my benefits for that time, and then attempt to return to work for the T. Even though that will be more frequent, side effects should be less, and another lucky part of my job is that the hours are flexible, so I can play around with my schedule to accommodate the infusions and still get in my 40 hours. I should also be able to work just fine through the radiation. After the chemo, that will be seem like a breeze. In truth, it feels like a relief to think about being off while going through this most intensive part, and just being able to focus on healing and making it through. If I end up surprising everyone and taking it like a champ with few side effects, I can always return to work at any time.
The other thing that happened yesterday was that I went wig shopping at the boutique located in the hospital. What. I also have realized that I hate the word “wig”. The sound of it, the associated feelings, all of it. I need to come up with something else. “Alternative hair” or “flowy headband” perhaps. My intention was to combat my feelings by trying on some wigs that are not at all me and taking pictures and trying to have some fun with it. While I did try on wigs that were not me, it ended up not being the fun fashion show I envisioned, and instead just felt depressing and awkward, so no pictures were taken to commemorate. My original thought was, this ain’t no secret. I don’t need to pick a wig that looks most like my real hair, because I’m not trying to pretend it isn’t happening. Why not try something completely unlike me? But when I tried on the completely unlike me….alternative hair thingies……it just felt phony and stupid and made me want to run out of the building. So I went with something that is darker brown, shoulder length, a few layers…..essentially it looks like my hair but thicker and better and what my hair would look like if I had a normal human amount of it and took the time to blow it out every day. I still don’t see myself actually wearing it much, but it feels like a security blanket to have, and to be able to wear if I want to go somewhere where I don’t know people and don’t want the sad cancer patient glances. It feels super weird to think about wearing it at home, or at work, or around friends…..and I can’t put my finger on why that would be. Like I’m trying to pretend the hair loss isn’t happening….it just seems fake and sad, but I’m not sure WHY I feel that way, because I certainly don’t think that about anyone ELSE who would choose to wear one. And if I’m wearing a scarf or a hat, it’s basically doing the same thing, covering up a big ol bald head. Maybe I’ll surprise myself and like it, who knows. Or, maybe I’ll just go all “bald out” and wear nothing at all and feel fine about it.
The other thing the experience brought up for me is anger at insurance companies. I had been told that this would be covered under my policy when I made the appt for the fitting. I even gave the woman I talked to all of my specific information for my policy and she called and double checked, and yes, with a prescription from a doctor, it’s covered. When we arrived, though, the person we met with took copies of my information again and said that while in general Aetna covers wigs for cancer patients, MY policy does not, and that when she had submitted claims for my employer (the state of Ohio) before, they have all been rejected. This is pretty upsetting to me, because while I was able to purchase what I wanted anyways…..not everybody has that option. Cancer takes so much away from you, and you should at least be able to obtain something that helps you look as normal as possible if you want it. If federal law dictates insurance HAS to cover breast reconstruction after cancer, it seems like hair loss should also be addressed. I can’t even think about what’s to come with the ACA repeal and what that will mean for so many people going through life-saving treatment. To summarize, insurance is awesome if you are lucky enough to have it, and terrible if you don’t, and I have a million and one feelings about where our country is as far as taking care of its citizens, and where we are headed. But that’s for another time.
Now that we know all the pieces to this puzzle, at least all the pieces it’s possible to know, we are going to have a conversation with Quentin tomorrow about it. Since he’s only 5, we have shielded him from most of this thus far. He obviously knows I had surgery on my breasts, and we told him that it was because the doctors found something inside that could make me very sick if they didn’t take it out. We had left out the C-word, feeling like it wasn’t something he needed to know about at that point, and because there was a chance that surgery was all I’d need, that maybe he would never need any further information than that. He’s a sensitive kid, and a worrier, and we wanted to make his 5 year old life as easy as possible. Now that we know this will be a long year of ongoing treatment, he needs to know more. I really hate that. He is spending the night with his grandparents tonight, so we decided to talk to him tomorrow when he gets home. Sean and I talked a lot last night about how to approach it, and decided that we likely still won’t volunteer the C-word. We’ll talk about the chemo, and how it is being used to make sure that I am healthy, and will cause me to feel sick sometimes, and will cause me to lose my hair. He has a very basic awareness of cancer, mostly from tv ads with bald children he has seen for St Jude, and the local James cancer hospital. He has never actually known anyone who has gone through this, so he has very little context for it. However, I think when we talk about the hair loss, there’s a good chance he will ask directly if it’s cancer, and if he does, we will be honest about it. Fun times, right? Just another thing that makes me angry….he shouldn’t have to go through this. None of us should, but him especially.
On a lighter note, I also was fitted yesterday for mastectomy bras and these silicone inserts that I can use until my implant surgery to make clothes fit in a more normal fashion. I never really thought about women’s clothes being cut to accommodate breasts, but of course they are, so everything looks funky on me right now. While the wig fitting was sad, the bra fitting was giggle inducing, as I tried on all of this stuff with a woman adjusting my fake boobs. Much like the childbirth process, at the beginning of this it felt awkward to open up my shirt and have someone starting at my breasts, poking at them and discussing them. Now, I feel like I could encounter someone in the grocery store and show them my scars and feel just fine about it. What, these old things? Everyone else has seen them, you might as well, too. Don’t worry, I’m not going to insert a picture of them into this post. You’re welcome.