Since my diagnosis, I’ve made some important decisions. Some of them were easy because they closely correlate to my personality. Others have been really challenging.
I’m not going to let fear trap me.
I covered this in a previous post, so I won’t go into it much here. This was one of the easier decisions for me personally. I’ve had to overcome fear a lot in my career. You can’t be a design lead who gets up in front of execs and pitches your ideas and not have a way of dealing with fear.
I’m not going to let potential embarrassment make me stop talking.
I have HPV positive squamous cell carcinoma (SCC). Is HPV a sexually transmitted disease? Probably (there are some doubts about whether it’s exclusively transmitted sexually now that it’s causing head and neck cancers). Does being specific about the type of cancer I have mean the first articles people see in their Google search talk about oral sex giving you cancer? Yep, it sure does.
You know what? I don’t care. I’m a grown woman (understatement) who has never engaged in risky sexual behavior. As far as I know, my partners never did either. I’ve always been monogamous. I have no idea how I got HPV, much less HPV positive SCC.
Seriously: WHO CARES? This is a deadly disease, and it’s 2012. It’s time we stop being embarrassed about body parts and functions and choices and start being honest, open and objective. Embarrassment doesn’t just stop people from talking about diseases like this–it stops people from talking to their doctors about problems that might help treatment or even early diagnosis.
To the Republicans who are trying to stop public health care coverage, including HPV testing and vaccination for young girls or who maintain that HPV is the “punishment” for sexual activity: Guess what, genius? HPV positive SCC primarily affects white men. Maybe that will change your mind about whether testing and treatment should be covered, even if you work for the Vatican.
I’m going to ask for help when I need it.
I’m not good at asking for help. No amount of italics and bold can really emphasize that enough, so just trust me when I say that I have a serious case of extreme independence. I’m also lucky enough to have been healthy for many years, mentally and physically.
I’d promised myself to ask for help if I needed it. I read that in a lot of the articles intended for the newly diagnosed. But I didn’t have to really DO it until the very end of last week. I realized that I was irrationally afraid of nausea from the chemo. When I say “irrationally afraid,” I mean I couldn’t even talk about it without crying. I wasn’t afraid of anything else in the treatment–not the chemo toxicity, or losing my hair (which is rare with Cisplatin), or potentially losing my salivary glands, or having radiation fired at my head every day for 7 weeks. But for some reason, the thought of nausea from the chemo wrecked me.
I finally found the strength to confess my fear to Charlie, and even that was a big step. I normally conquer my fears, and my Spock brain can usually reason its way out of them. Not this one. I cried while I talked to him about it–the first time I’d cried in several days. He encouraged me to talk to my medical oncologist about it.
So I did. It wasn’t easy, but I told Dr. Ekstand how afraid I was about it, and that I didn’t want the fear of being sick to make me sick (anticipatory nausea… and note the use of video games to help treat it!). Dr. Ekstrand was great. He talked me through the modern anti-nausea drugs, recommended positive visualization techniques, and gave me a prescription for an anti-anxiety medication to take before the first treatment. I felt better already: I had a plan!
I made a vow right then not to make it so hard next time. When I need help next time, I’m going to ask.
I’m going to sing every day I can.
I took music classes in college, and dropped out when we got to sight singing because I didn’t have faith in my voice. I was right to some extent: I don’t have a great singing voice. I do have great pitch, though, and I like to sing a lot. It’s not just while playing Rock Band. I didn’t realize how much I sing until I had the biopsy, which made my mouth and throat hurt too badly to sing while driving, working at home, doing the dishes, etc..
I’m still hurting, especially when my throat or mouth dries out (which happens quickly when I sing right now). It’s getting better, but I know the radiation and chemo are going to have a significant (and potentially painful) effect on my throat so I probably won’t have much (if any) time that my throat feels much better until at least a month or so after treatment.
You know what, though? I’m going to sing as long as I can. It may only be one song or part of a song, it may be very quiet and I may lose my pitch for a while… but I’m still going to sing.
I can endure the rough spots.
My cancer treatment may be pretty crappy. It’s not super life threatening–probably less dangerous than many surgeries. It just makes you feel like shit.
Dr. D told me: “You only have to do three things: get to treatment every day, use a baking soda and salt rinse three times a day, and don’t smoke.” Well, that last one’s easy, right? Actually, all of them are easy because all I have to do is wait it out. Who cares about feeling like crap for a couple months if it means I’m cancer-free afterward?
Once I realized three things, I changed from scared to excitedly optimistic:
- The treatment is very, very unlikely to kill me.
- The treatment is very, very likely to cure me.
- The treatment may make me feel like the worst case of strep throat ever, or the worst flu ever, or like I drank a quart of too-hot miso soup… but all of those things will pass in a very, very short time compared to the rest of my life.
I’m going to keep remembering what I deeply and truly believe.
I don’t talk about it much and I’m not going to start now, but I have a life-long and deep (albeit unconventional) belief in God. Whatever happens, this is not the end for whatever combination of energy and spirit and color and passion and experiences that make me who I am.
All of these decisions led me to my biggest realization. It’s the reason the first post in the cancer blog referred to my next great adventure.