Another Body Murdered

 

When I was a kid, I lived at the pool. It was my favorite place to be. As an adult, the chemicals, sun exposure, and splashing kids zapped all of the fun out of going to the pool, but I still loved the water. If it was realistic to have a hot tub, we would have had one a long time ago, but the best I’ve been able to do is make the most of my long, hot showers. It has always been one of my favorite parts of the day.

Over the last few months, I’ve come to dread the shower. At first, it was because the rules were confusing after my surgery, and I had a lot of fear that I was going to do something wrong and get an infection or damage a tightly stitched area or just hurt myself, in general. As time has gone on, however, it has turned into an exercise in total body loathing. 

First, I wash my face. Sometimes it feels big and puffy from the steroids, others it feels sunken and shrunken and droopy from the chemo and the rapid aging. Sometimes it hurts from the swelling or the chemo induced acne. It never feels like mine.

Then, I wash my hair (or “hair”…). It’s, of course, mostly gone. The hair that’s there is short and sharp, and scrapes  my hand like a wire brush. The areas without just feel weird. I hate the way it feels more than the way it looks, and I can assure you my hatred for the way it looks runs deep.

My upper body is next, and that’s the real shitshow. I have scarring on my neck from the port, and then I have the actual port, which has its own scar, but is itself a clearly visible lump under the skin. I have numerous biopsy scars, and then, of course, all of the ones from my mastectomy. There are additional scars in my armpits from the partial lymph node dissections, and more on my sides from the drain tubes. There is also a weird lump on my right side where I still have some swelling and have developed some scarring under the skin where the drains were. 

The scars are ugly, and each is a reminder of its own trauma, but that’s not the bad part. The bad part is that I can’t feel any of it. I can’t feel these weird, hard, “foobs” (which is the cancer community’s term for the fake boobs), though somehow they still hurt. I can’t feel my armpits. I can’t feel my sides. It’s all numb to the touch, which is kind of… revolting… I hate to touch any of it, so showering is distressing.

My belly is huge. Some of it is swelling and weight gain from the steroids, some of it is “chemo bloat”, which I don’t have an explanation for but know it’s a common side effect. All of it looks like pregnancy, and it’s marked by my c-section scar, which is a reminder of the other trauma.

My legs, core, and glutes are all weak now. And my legs are soooo hairy. I’m not supposed to shave, due to infection risks if I get a cut, and, while much of the hair on my head bounced, I’m somehow one of the lucky few whose leg hair is holding strong…

Honestly,  I was never good at building upper body strength, but these lower body parts used to be SO strong. I was able to do so many things, and now I’m not. I put years of work into building that strength, and it’s all gone. All of it. And at nearly 50, with a body that’s been through everything mine has, and everything it’s going to continue to go through, it is extremely unlikely that I can get it back.

Showering was one thing I could still do, and is one of the reasons I decided not to do cold capping to try to save my hair (no hot showers, limited hair washing with cold capping), but now it’s a chore that I dread.

All of this is has been focused on my “outsides”, but of course the chemo is wreaking havoc on my insides, as well. I have side effects that range from very mild to pretty debilitating, but I experience one or more at pretty much all times. One of the worst has been hot flashes. I had them before my thyroid condition was treated. I had them again after my doctor put me on hormones then took me off again. But wow… none of that comes close to the chemo hot flashes. They are brutal. When they finally calm down, I have “cold flashes”, which are just as brutal. It’s destroying my sleep and is a contributing factor in why I can no longer exercise.

It has just been a very dark time, lately. In reality,  I’ve been fairly isolated since Patton was born, but I was able to go to classes at the Y or the yoga studio or aerial studio. I ran errands. I worked on big projects at home. I kept busy. When Brant was home, we would go to restaurants or go shopping or visit family. We went to basketball games and concerts. The pandemic changed all of that, of course, and restricted our lives immensely, but we still managed to keep busy. I redecorated part of the basement! I painstakingly hand painted our stairwell to look like wallpaper! 

Now, I’m home by myself all day. I can’t do home projects. I can no longer exercise. I can’t go to basketball games or restaurants or anywhere that isn’t some sort of cancer appointment. I don’t hear from friends and haven’t for months. It’s just day after fucking day like this, so I’ve got plenty of time to dwell on THE BAD THINGS. How foreign my body is, how it might not live all that long, how I’ll never feel safe in it again (it has tried to kill me twice, after all), and how I pretty much just hate it now, as well as all of the other ways that cancer has deconstructed my entire life. Like I said, dark times.

When I do have the opportunity to talk to other people about what’s going on, whether that’s people in my house or people in cancer groups online, there’s often pressure to remember all of the others who have it worse than I do. At least I caught it early. At least science has come so far. At least I don’t have children who understand what’s going on. At least I have a partner to help me through it. At least I have good insurance…

All of this is true. ALL of it. I am absolutely, 100%, truly grateful for all of those things, and I fully recognize that there are people who have absolutely devastating cancer (and other) situations. What I don’t understand is why the “even worse” suffering of others is supposed to somehow erase how hard this is??  We could make “at least” comparisons for anyone with any problem, but I don’t see a lot of parents of children with a learning disability being told “at least your child is alive” or people with a peanut allergy being told “at least you can eat ice cream”.  Why are major traumas held to a different standard?

Hard things are hard, even when they could be harder. 

Things will never be the same. They are forever changed. Permanently. (I know this for a fact because it happened with Patton’s traumatic birth, except we got Patton out of that so it was totally worth it!) From my physical body, to my relationships with the people who have vanished, to my sense of safety and security, to my trust of medical providers, to my long -term plans, to my life, overall. Nothing will ever really be like it was before cancer.

I got a somewhat confusing estimate from my insurance last week that I will owe somewhere between $5 and $10 thousand dollars for the month of January. I am so, SO lucky to have this insurance. I absolutely am. But I was in the process of pursuing a dream when I got diagnosed, and the money for that will now be going to cancer. Done. Gone. Thousands of dollars. Dream over.

 It seems like cancer has gotten to destroy my body and steal a large chunk of the things that matter to me, and it seems like I’m supposed to just smile and say that it’s fine because it could be so much worse. I’m pretty sure that I’m supposed to do that because having feelings about things makes other people uncomfortable. And that makes me have more feelings, which are now bordering on rage, to be perfectly honest.

My nurse navigator said months ago that patients often apologize for being angry or upset about their cancer because they feel guilty that’s theirs isn’t as bad as others. She said that it is totally possible to be grateful for everything that you have, grateful that it isn’t worse, grateful to be able to get treatment, etc., and simultaneously be devastated and enraged by the cancer that you do have, and that that is where most people live. I am one of those people right now, but I’ve decided to own it rather than apologize for it. I am taking all of the necessary steps to address it (treating the cancer, treating the side effects, getting therapy, doing the work….) and I am posting about it here because it’s real and honest and also so I can exorcise some of it and move on. Everyone can choose to be uncomfortable or not, and take it or leave it. I can’t be responsible for how it makes other people feel.