Some days are harder than others and I’m really not sure why. However, this was true in life before cancer as well so perhaps it’s my depression, anxiety, hormones, or a healthy dose of all 3. Regardless, at any given moment a hundred thoughts are flying around my head, and today I happened to grab onto the not-so-happy ones. So, to illustrate what goes through my head even though I always seem to have my shit together:
1. I have fucking cancer.
Like…what the hell. It still doesn’t seem real to be honest. I want so badly to cling to the hope that they got it all with surgery, but the fact is that is completely unknown. I had a lymph node involved, which means although not far, it was already spreading. It could have spread to the other side of my neck, we didn’t dissect that side (but we will irradiate it). There could be microscopic cells biding their time until they can build their evil little cancer empire (this is a whole story in my head and if I develop the patience to draw, could make one hell of a comic). Anyway…I’m freaking scared. Terrified at times. For all the stories of people in remission for 5, 10, 15 years there are just as many who get a scan and hear “recurrence” or “metastasis” or “incurable”. Which brings me to my next thought:
2. This isn’t something that I can “put behind me”.
I know my family and friends mean well when they say things like “pretty soon this will all be behind you/us!” I appreciate the sentiment and they’re partially correct, this leg of the journey will indeed be over. But for me this is forever. I will always worry about every new pain, itch, lump, cough, etc. I will continue to see my doctors for years after I hopefully get a NED (if I get there, I really really hope I do). So many people think “oh, they cut the tumor and lymph node out, you’re cancer free now!” But that isn’t how cancer works. And since we have NO idea what caused this, it’s not like I can change any modifiable risk factors.
3. I have no control.
Well, that isn’t totally true. I can control my thoughts and response to those thoughts (hence this cathartic post), but as far as the cancer goes, it really is a crapshoot. One with statistics and best chances of course, but no guarantees. Growing up, that was one of my biggest struggles and it turned into full-fledged anxiety as an adult. I have this insatiable desire to know everything because it gives me a sense of control. However, I’ve also learned over the last year or so that that’s a horrible defense mechanism and it’s best to just let go and let life happen. And usually I’m pretty good at that recently. But then there are days like today where it just rears its ugly head and I find myself Googling “Stage 3 tongue cancer prognosis” and spiraling down from there.
4. I’m still mourning “the old me”.
I’m sure to some people I don’t seem all that different. The changes on the outside are fairly minimal: a few scars, a new speech pattern, taking a bit longer to eat and in smaller bites. But to actually LIVE this has changed me. It isn’t all bad; I feel like I’ve gotten more confident and accepting of myself as a whole (which seems odd) and I care SO MUCH LESS about petty drama. These were things I was already working on before my diagnosis but the cancer kind of boosted the process. Those are the good changes that I’m grateful for. The parts I miss are mostly things we all take for granted.
I miss being able to go to a restaurant and order a burger and bite into it. I was such a fast eater before. Truly it’s probably a good thing that will only help me keep my weight under control in the long run but man…I miss it. And I miss being able to stick my tongue out for silly pictures with my son (or anyone, really). It was my signature move. I miss being able to kiss without really working to get my lips right and not drool. I miss being able to lick the pudding off the top of a snack pack or the ice cream off a spoon or the batter off the mixer (salmonella be damned). I miss my damn tattoo on my arm even though it’s pretty badass that it’s on my tongue. I miss being articulate and a good speaker and not sounding like I’m playing Chubby Bunny 24/7. I miss singing (horribly) at karaoke. I miss all the plans I put on hold. I miss being a nurse. And, though I assume it goes without saying, I miss being a mom to my son most of all. I know some of these things will return with time but they’ll never be as they were. I’m still working on accepting this new reality.
5. This could kill me.
Yeah, the odds are in my favor for now…but, as mentioned above, they’re just odds. Usually I’m fairly optimistic but I’d be lying if I said the thought doesn’t cross my mind that this could turn terminal at any time. I’m young, relatively healthy, active.. but I’ve met so many other people online who were all those things and still got dealt the shit hand of terminal illness. We (especially Americans) tend to cling to the Just World fallacy with such tenacity. If someone is good, does all the right things, then they’ll have a great life and if someone is bad and does the wrong things they’ll be punished. It’s a wonderful little tale to help people sleep better at night I guess, but it’s complete bullshit. Not only do previously perfectly healthy, altruistic, compassionate individuals wind up with cancer (or some other horrible fate) but CHILDREN die daily of this stupid disease. Can’t be much younger or healthier than a kid. Yes, some make it (I know one such miracle boy) but many don’t. And I don’t have an algorithm to tell me how to increase my odds of living a long, happy life so it crosses my mind that this could be the beginning of my end and that’s something I’m working on accepting as well.
Sorry this turned into such a long post. I just had to get some things out I guess. Just know that even though the people you see as shining examples of courage seem to have it all figured out, they don’t. They still have bad moments or days and they still cry and get frustrated and angry and bitter. But, they also always find a way to stand tall and walk forward again.