My Truth

I ran into my dad’s cousin in the hall at work. It’s been almost a year since I’ve seen him. I immediately apologized for never returning his call back in December. He said he understood and all is good. He asked how I’ve been and I gave him the sugarcoated, “great, all things considered” answer I usually give everyone. Then he asked if I knew he was a cancer survivor. I had no idea (and if I did, I’ve already forgotten). He told me he battled hard in ’92 (explains me not remembering, considering I wasn’t even born yet—joking), had several inpatient stays and chemo, and almost died a couple times.

Immediately my tone changed. I told him the truth. I told him how horrible radiation had been, and how dreadful my new chemo is. But why? Why did it take him admitting to being a survivor for me to tell him the truth? Why do I keep sugarcoating my answers for people? Who am I protecting: them or me? It’s as if I have to be ok with everything to everyone else, but those who have gone through or are going through the same, get the truth.

Honestly, I don’t think it’s fair. This is why caregivers and outsiders don’t know what to say or how to act, because they don’t know the truth. No fault of their own, but why do I feel the need to lie about it? Will it make me less of an inspiration if I complain or say how awful this whole thing is? I can still have a positive attitude, despite how shitty of a situation this all is.

So the truth… because a few of you have admitted to being too scared to ask, but are genuinely interested in knowing. Please keep in mind, these are my experiences, and not everyone will have the same reactions or encounters as me.

Chemotherapy. Yuck. For me, the day of chemo (Mondays) are okay. Tiring, but okay. I have gotten to the point of not wanting anyone to drive me or accompany me, as I don’t have the energy to entertain. I know none of my chemo companions ever expected that, but I did. I felt like I had to. That’s on me, not them. But it’s easier for me to relax (and work remotely on my laptop) if I just go alone. When I first started going to chemo I thought how sad it was for all the people there by themselves, and I would sometimes have as many as 5-6 visitors each treatment. Now I’m realizing maybe they weren’t lonely at all, maybe they wanted the alone time and didn’t want to have to entertain either. It’s quite possible. On the days the nausea kicks in or the big D hits, I most certainly do not want anyone with me witnessing that! The following day/days (Tuesday and Wednesday) are typically pretty easy-going. While being tired is a constant, these days are a little more extreme. But other than fatigue, no real symptoms. The next following days (Thursday, Friday, and Saturday) are usually rough. Sometimes even real rough. Symptoms often include: fever/chills, nausea, diarrhea, fatigue, and bone pain. Ohhh the bone pain. We’re talking labor pains, ladies… and for men, I can only imagine the equivalent, but we’ll go with kidney stones for now. Less severe, but equally annoying symptoms for me personally are: multiple mouth sores, insane acne, ingrown hairs/sores on scalp, nosebleeds, and neuropathy in my hands and feet.

Radiation. Dr. Cho commented how “well” my skin did for my treatment, but he wouldn’t discredit my pain. The thing I can most relate this to is a tanning bed burn. That deep, irritating feeling. Except when you burn in a tanning bed, you stop going for a while, giving your skin time to heal. This isn’t the case with radiation, you just keep going and adding burn on top of burn. For the first few weeks I thought I would luck out because I still don’t have total feeling in certain areas due to my surgery; that was wishful thinking! I did let a few people know my insides were on fire when asked, but always with a laugh to follow. Because once again, I can laugh or I can cry, and I only cry at home, in front of Jake or into my pillow, so laughing is a must!

The day to day and things that are ridiculous but still bother me…

Brain fog (aka chemo brain). This is so real and such a struggle. For someone who prided herself on her intelligence, I often find myself stopping mid-sentence with no words in my head, or finding misspellings and typographical errors. This is so frustrating and disappointing to myself. I have a hard time concentrating on my work, and have to try extra hard not to make mistakes. I used to teach a class for work but had to remove myself when diagnosed. I feel like I am physically well enough to go back to teaching, but I am nowhere near the mental capacity needed. This angers me also.

Weight gain. Prior to my diagnosis, I was the healthiest weight and most in-shape I had been in over ten years. My appearance and stamina were right where I wanted it. Steroids and self-pity took care of that, fast. Additionally, upping my anxiety meds and changing my depression meds landed me another 20+ pounds to pack on. January was a really tough month for me, thus using medical marijuana almost every night, leading to me eating chocolate (like entire boxes) every single night. That shit will catch right up to ya!

Fragile bones/brittle teeth. If you’ve ever seen The Hangover when Stu pulls out his own tooth and says, “I look like a nerdy hillbilly!” that was me for the last six months! I managed to chip my front tooth on a metal tumbler, and didn’t have the gumption to get it fixed. I just walked around looking like a hillbilly for all the holidays! I did joke I was going to blame anesthesia after my surgery, but they documented it prior to putting me under. Rude!! So now I have to be mindful of what I’m doing as to not break a bone or lose a damn tooth! Last week was my six-month teeth cleaning and my dentist, Kind-hearted Kenny, fixed my tooth right up and I look as good as new!

So for what it’s worth, if you ask how I’m doing and I say, “as to be expected,” you now know what is expected. I feel like shit. But I can either feel like shit lying in bed or I can feel like shit sitting outside watching my girls play. Just because you see me out, doesn’t mean things are any better or any worse, they just are what they are… and that’s my truth.