Waratorium

 

I have completed my first cycle of Taxol. I have my second infusion (of 4) tomorrow. The first round went pretty well. I had terrible bone and joint pain for a few days. It was worst in my knees, but also appeared in my hips, ankles, spine, and neck. I was pretty devastated when the pain hit because I’d finally been feeling better for a few days, but luckily it was only severe for 2-3 days and then reduced to more of an annoyance. 

I’ve also had a lot of fatigue, but my stomach issues are better, and my sense of taste and smell is less affected than on the “red devil”- at least so far.

I got my first sore, but luckily it was in my nose and not my mouth, so it wasn’t a big deal. I’ve only had 1 throughout my entire treatment, so I’ve been pretty lucky on that front. I did, however, get a terrible breakout on the whole left side of my face, and have tiny, itchy, single bumps randomly around my body. Still, better than a bunch of sores in my mouth!

I had my pre-chemo lab work today. As usual, my white counts are a little high and my red counts are a little low. This time, my liver enzymes are high, which can be indicative of a problem, but since I haven’t heard from anyone, I assume they are “normal enough” for a person undergoing chemo.

Switching gears, I wanted to share a few of the things I’ve learned from the cancer community, and from my own experience, in case you or someone you know is at the beginning of a cancer diagnosis.

1. The very beginning is the worst part: The treatments and surgeries are not fun, but the part between the biopsy and the results and having/starting a treatment plan is the absolute worst. There is so much terror and uncertainty…if you know someone who is in this phase and they seem “fine”, they probably aren’t.

2. It takes a lot of time: Most people have multiple scans and tests, then multiple treatments. Surgery and recovery typically take a few weeks, radiation takes 3-6 weeks (at 5 days per week), chemo takes months for most people, but for some it takes years. In my case, diagnosis through active treatment will have taken up about a year of my life. I will then be on hormone suppression, which typically comes with plenty of its own side effects, for 5-10 years. I will also still have at least one more surgery, and I will not be declared “in remission” until I’ve had no evidence of disease for 5 years.

3. Many breast cancer patients rage against the notion of being a “warrior”: Most of us are just doing what we have to do to survive. It is not a battle we have taken on. It was forced upon us and we are doing the best we can, and that looks totally different for different people. Some people embrace the “warrior” symbol, and it’s totally justifiable because this shit is hard, but that is something that patients should choose for themselves. Some cancer patients get really angry when other people call them warriors. A poor person posted a “warrior” poem in one of my online cancer groups and got absolutely clobbered by the group members. I knew it wasn’t popular with a lot of people, but (apparently) it’s truly infuriating to many! I do not personally find it enraging, but I understand why others do, and I would feel uncomfortable being called a “warrior”.

4. Cis men, trans men, lesbians, and non-binary people also get breast cancer: People who aren’t cis/hetero women are often not treated with the same level of  care, concern, and respect after a breast cancer diagnosis. A mastectomy required as a result of breast cancer is not “free top surgery”, and is still traumatic. A cis man may not place the same importance on his breast tissue as women, but it’s still an amputation (or other scary surgery ) and it’s still cancer. These people often aren’t taken as seriously, and do not get the support they need. 

5. Women get a lot of comments about their appearance. So many in my online group have heard things like “let’s see ‘em” (??!), “oh, a free boob job”, “at least you have a nicely shaped head”… Ugh. Nobody wants any of this. Again, a mastectomy is an amputation of parts of your body. Someone in the group referred to their baldness as a “non-consensual hairstyle”, which feels pretty accurate. All of this stuff is traumatic, and, while some people may “rock” a bald head or be satisfied with their reconstruction, pretty much everyone would prefer to have never had to adapt to either. Our bodies are attacked by the cancer, and then traumatized over and over by each level of treatment. A lot of BC patients feel like these kinds of comments and “compliments” are a form of toxic positivity that undermines what they are going through and/or have gone through. I’m just going to put it out there that it’s probably safest to ask a person how they are doing rather than to comment on how they look, and honestly, that’s probably true in most situations- not just cancer related ones.

There’s lots more stuff, but that’s enough for now. I didn’t know or even think about this stuff before I had cancer, myself, so I thought I would try to pass on some of what I’ve learned.

5 down, 3 to go!