Today was a hard day. The first of many hard days, I’m sure.
I did shit I needed to do to get ready. I went to Kaiser and dropped off my disability paperwork with the oncology department, got my blood drawn to make sure my blood levels are good enough for me to receive treatment on Tuesday and I picked up some prescriptions I needed to grab to take before chemo.
I also went to the eye doctor because I’m almost out of contact lenses and they won’t refill your contacts if your prescription is expired and the prescription only lasts a year. This is frustrating for me and even though I tried to keep my cool, I snapped at the poor eye tech who asked if I wanted my eyes dilated or if I wanted to pay extra for the fancy machine to do the same thing that I don’t want either because it doesn’t matter and I’ll be dead before my next eye appointment. Not my proudest moment and I do actually believe there’s a good chance I’ll be around for another eye exam. But hey, I’m under a little stress.
After the eye doctor, I was making my way to a friend’s lab where there were vials of concentrated cannabinoid extracts that he’d made for me and that my doctor enthusiastically encouraged me to add to my treatment. On the way to his lab, I finally received a call from Kaiser about scheduling getting my port implanted. They wanted to know if I can do Tuesday morning at 8am – right before I start my chemo at 10am. Sure, I mean what fucking choice do I have?
Someone lost or somehow misplaced my order that the oncologist had sent them on MONDAY to get me fucking scheduled for this thing. Now, in the grand scheme, this is fine – people who live in rural Colorado sometimes need it implanted on the first day of chemo because of a three hour drive to Denver. But you know? I live 3/4 of a mile from the hospital and am anxious enough about about starting chemo – I really didn’t need an additional early morning procedure that day of. Thanks, you incompetent assholes. I was livid. I couldn’t believe there was nothing they could do to get me in Monday – no one they could bump.
Very soon after that, my oncology nurse called to again go over the side effects of the chemo cocktail they’ll be giving me. It’s a really nasty one. Apparently one of the harsher they can give you – which I need because my cancer is advanced and we’re late to the game. I’m scared of being and feeling sick. There is a very good chance I’ll have at least a few of these things: sensitive to cold(this will happen for sure they said) where I can’t drink anything colder than room temperature and I need to wear gloves to get something from my freezer, diarrhea, tingling in extremeties, mouth sores, easy bruising, fatigue, hair loss, nausea and a bunch of other stuff.
I’m slowly getting my affairs in order and have gotten an estate lawyer who will help me set up a Revocable Living Trust which will get everything I would need in life and death set up. I’m successfully upsetting my friends and family by beginning to ask what items of mine they might want in order to remember me should things take a turn for the worse. I know it sucks to think about and most people are all about the positive thinking but I can’t buy that whole hog. I’m very sick. I already don’t feel well and I’m going to begin poisoning my entire body soon, hoping it has the effect of killing these fucking cancer cells. I have a very serious disease which has a ridiculous leg up so far in this fight. So I’m sorry to anyone who cares about me and loves me because my down moments will be hard. I’m sorry to my friends who keep telling me not to tell anyone I’m sorry for anything.
Cancer fucking sucks and it’s ok for me to be down. It’s ok for me to confront my own mortality. It doesn’t mean I’m not fighting. It doesn’t mean I’m not continuing to fight. It doesn’t mean I don’t believe it is in within the realm of possibility for me to live more years and get to a healthier state where my entire existence is not devoted entirely to beating cancer. But that’s not where I am now. I need to face the reality of my situation and the odds against me. I love you all. I need you all to stay positive for me. I need you to keep some of that positivity to yourself because if you tell me that I need to stay positive or I’m going to die and I wind up facing death, you’re making me feel like it’ll be because I didn’t try or believe or fight enough. And that’s just not true. It’s so fucking cliche but its really true – if you haven’t been in this fight for your life against this shitty ass fucking disease, you just don’t understand and that’s ok. But please, be kind to me and don’t be contrarian to me when I’m down. I need compassion, now, in these moments more than ever, when I’m having a down day.
Love you all and thank you for your support and for doing the best you can without a playbook.