Things I Didn't Know Until I Knew

How many things did I think I didn't know until I knew them in this journey? All of them. That's how many. And that's a lot. I still learn new things every day, experiences different things, and as a result, sometimes my course of action changes along with those.

Here's what I didn't know until I found out on my own:

1. After all my hair fell out (with the exception of those few that were mighty and determined that stayed), I didn't know I would fall into the "unknown or unsure" gender category. I am serious. I was out in public many times, and felt people staring at me. It was awkward. Despite wearing a dress or skirt, wearing jewelry, and wearing sandals (that only girls would wear), I still got looks and was pointed at many times over. I am not being paranoid. The biggest tell from most people was when I went into a public bathroom. I got the look "is that the right bathroom for you?" Wow. People are fucking ignorant.

2. Chemo treatment is not pleasant, nice or forgiving. It's that simple. What I didn't know is that this would throw me into menopause (in a way) and with this would come some severe hot flashes. Hot flashes like my fucking body feels like it is practically on fire. Let me go run outside nude, and dive in the snow (which we don't have here). Since I started back with Keytruda, these hot flashes have fired back up (pun intended).  This past week, the weather suddenly changed and it got cold, quick. Cold for Texas anyways. The last 2 nights, it dipped down in the 20's overnight. Over the past week, I have been sleeping with my bedroom windows open all the way. One may think that's crazy. Not only that, but the ceiling fan is running full force as well as the stand fan on the floor, and I am sleeping nude. Can you believe I am still hot? Like WTF?!? And my blanket situation is minimal to non existent. It is just fucking ridiculous.

3. Did you know your skin changes because of chemo? Fucking chemo changes everything. Your skin "thins out" so to speak. I don't mean my skin is falling off or see through or anything that just sounds fucking stupid. Sex is very uncomfortable. A bit painful. It sucks basically. I didn't know I should expect that. Chemo just sucks the joy out of anywhere and everywhere it can.

4. No offense to my readers, but people are fucking stupid, ignorant and oblivious. With that being said, you dont know what you don't know, like all of these things I am talking about. This goes for everyone else too, however, I feel like if you cannot speak intelligently on a subject, don't say anything. Save yourself from looking like a complete moron. So the comments I have gotten more times than I can count and the one that irritates me the most (since I've had my double mastectomy) is "well at least you are almost done now". The fuck I am. That statement couldn't be farther from the truth. What a kick in the gut for you to assume I am almost done. That was part 2, out of what feels like 435 parts. Realistically not that many, but I am not even 50% of the way through all this bullshit. So when you are making dinner and it's only half done, well it's almost done, right? No, no it fucking isn't, you idiot. Would you eat your chicken cooked at 50%? No, not unless you want a side of salmonella with that shit.

5. I have hair, although it is short, it's still there. Yahoo! No more questioning my gender. At least I think that part is over. I haven't noticed any more stares so that's great. What I didn't know about having short hair (because I have never had hair this short), was that my head would get cold. Consider this; I lost my hair completely on March 30th, and by that time here in Texas, it is summer like weather. I went through the blazing hot summer with my head sweating. Then, in the last week, the temperatures have dropped so much, and we are having true winter like temps. I find myself putting on some kind of hat, chemo cap, head scarf, something, because my head gets chilly. (Funny because my body being on fire, you think that would go to my head.........lol).

6. What I didn't know that I feel causes me the most concern is the lack of being able to just bounce back, sleep it off and just overall feel "normal". I still have restrictions. Not restrictions where my doctor tells me not to do this or that, but my body letting me know I am pushing it, or shouldn't be trying to do what I am doing. The nerve disruptions I am experiencing due to my surgery and my nerves being cut and having to wait for them to "wake up". How my nerves feel as they are waking up and how that impacts my movements. I just keep waiting, and things are getting better, but jesus christ, it is so SLOW. So fucking slow. With these things being said, it makes me wonder why people electively have plastic surgery? Like why would you fucking torture yourself like that? Nope, no thanks, not for me. 

I wonder what else I don't know, to a point, but guess what? I am going to find out.

Let's Get Physical

Let's get physical, I want to get physical. Do you hear that song now? I do. But perhaps the statement in itself has you thinking something dirty? Maybe I can finally have sex or want to? No, that is not what I am talking about.

https://www.youtube.com/watch?v=vWz9VN40nCA

I went for my second dose of Keytruda yesterday. Met with my oncologist. It was good to see him because I had some concerns as I have mentioned previously. He asked how I am feeling and I told him I was tired and have not been sleeping too well. I also told him I suspected I haven't been sleeping well because of my mastectomy. H didn't agree or disagree. I then told him about my muscle weakness. He said this isn't unusual and I may not have felt it before because the steroids counteracted that. Ok, I can buy that. But now, not having steroids, may be exactly why I am feeling it. Alright. He did not hesitate to mention that physical therapy is an option. I immediately jumped on board with that. Whatever I can do to help myself is exactly what I am going to do. He recommends three times per week.

I am going from being laid up and relaxed most of the time to a super busy woman. Not only am I getting ready to go back to work finally, but then I will have my infusions and physical therapy. Yikes! In reality, it's all for the greater good, so let's do it!

The Floor Is Lava

Do you know the game? The floor is lava? I played it when I was a kid with my brother. Who would have thought I may be playing again as an adult, but in a different aspect. Let me elaborate.

I am not one to read the side effects of any prescriptions I take. I just feel like if I did, I would have them all, or at least many of them. This also has carried with me with these chemo meds. The ones I was taking before, and the one I am taking now.

I have been more tired than usual. I didn't really think much about it. I am having a hard time getting comfortable, I am suppose to be sleeping on my back, etc. These things just make for a poor nights sleep, thus leading me to believe that's why I am tired. Makes sense. I just left it at that and went on with my days.

About a week and a half ago or so, I noticed when I got up, whether it be from the couch, chair, out of the car, or wherever I was sitting, that my legs are really weak. Strange. I have never experienced anything like this other than when I work them too hard or participated in an activity I wasn't used to. This is not the case right now, because I cannot function like I used to, especially with still healing from surgery. So what gives? I didn't know, but put more thought into it, because every time I get up, I walk like a little old lady, walking slow and clearly visible that my legs are weak. 

This gets me to thinking on more than one level. What if whatever is going on with my legs is permanent? I cannot have weak legs like this for the rest of my life. That would be horrible. Then I think it's just part of me healing because I am resting more trying to recover, therefore not using my leg muscles as much as I usually do, and maybe my muscles just need more activity. I don't know what it is, but I am also not trying to consume myself with overthinking this either.

So this is what I decided to do. I looked up "Are weakened muscles a side effect of Keytruda?" The answer? Yes. Weak and/or painful muscles is a common side effect. So I think I have my answer and what is causing this. Good or no? I don't know.

Here's my next thought. I will be taking Keytruda (which I just learned is also a chemo drug; this baffled me because I already went through chemo, but did take Keytruda then too) through April 2023. Holy shit. That means I have another 6 months of this shit. Christ that's a long fucking time, especially if I have this side effect. I am going to talk to my doctor and see if there is something I can do to counteract this. Exercising seems to be the logical thought on this, however, as I have been going through this journey, what would seem to be the most common sense answer isn't always the case, and really almost never is. Perhaps walking, taking walks that is, is the answer. 

I feel like having weak legs, weak muscles in my legs or whatever is going on, I would think I may have to "rehab" them later, to build back my strength. I suppose with this, time will tell.

Just when you think you know what's in front of you and what is coming next, this battle says, ya, sit the fuck down, you don't know shit; and this, the floor is like lava for me. At this point, I would melt.