And just like that it’s August. Where does the time go? With COVID-19 barreling through our reality the days shifted to Netflix and baking all the things and long, meandering walks through our neighborhoods. Along with those fad attempts to pass the time, I finished 4 rounds of intensive Chemotherapy aimed at annihilating any potential cancer cells in my body. I rode the Chemo-Wave of nausea, exhaustion, body aches, and fatigue. I lost my taste buds to the worst taste imaginable, one I couldn’t describe even if I wanted to but that I like to imagine is the taste of cancer being eradicated from the human body: sour, foul, pungent. My hair left. My body felt foreign. There were all types of days. Good days. Bad days. Horrific days. Days I went on runs. Days I couldn’t even get out of bed. Chemo is as bad as you think it is only times that by five and then add a mental hell you didn’t know about. Then we decided why not add 30 rounds of radiation into the mix. Really bring out the defense and strike while the Cancer fighting iron is hot. Radiation was tedious and exhausting. I spent every morning for 6 weeks holding my breath through a breathing tube so a meticulously calculated machine could deliver doses of high-energy particles to destroy any cancer cells that might remain. The breathing techniques were timed so my heart was as far away from the radiation as possible to keep it safe.
Maybe I should walk around and hold my breath to protect myself from this crazy Cancer and COVID-19 world I was living in.
My left breast turned a lovely shade of purple-red from the burn which was comically shaped like a perfect square. It peeled. It oozed. It made it painful to sleep, to run, to put clothes on.
Chemo was more difficult than I was prepared for. Radiation hurt like hell. And our world went into quarantine due to the global pandemic COVID-19. Many people said that at least I didn’t have to be the only one missing out on anything anymore. Now that the world was shut down, I could enjoy having Jesse home (which I did) and continue waiting out the time of my chemo/radiation-hell with the rest of the world on pause.
Let me say this: COVID-19 and Cancer are a TERRIBLE combination. I’m pretty sure you could replace the word Chemo in that last sentence with anything but for this post I’m specifically talking about cancer. I would have taken on the sole responsibility of missing out on an indefinite amount of life experiences due to that chemo/radiation-hell if it meant COVID-19 never happened.
I wish I could have missed everything if it meant none of this was real.
COVID-19 took away the much needed glimmers of normalcy needed during active treatment that make each day of hell bearable. I went from turning away visitors to wishing more than anything people could stop by. Days of anxiety turned into weeks. Our world, as we knew it, was gone which eerily is how it feels when you’re diagnosed with cancer.
Yes, I threw myself multiple pity parties thinking about the fun, exciting things that were now most likely indefinitely put on hold because I’m a selfish, vain human. But as the length of the pandemic grew so did my understanding that really I’m still one of the lucky ones. As people cancelled weddings and birthdays and vacations, death tolls rose across the world. As gyms and hair salons couldn’t open, people’s loved ones were alone in hospitals and end of life homes.
Perspective will always be a beautiful, sharp friend.
One of the scariest things to me about COVID and Cancer are A) the number of men and women who are not being diagnosed because either they are unable to get in to see their doctor or are too scared due to the quarantine restrictions or B) being diagnosed and starting the terrifying process of a Cancer diagnosis on their own. When I was diagnosed there wasn’t an appointment I went to without one or more loved ones with me. I woke up from all my surgeries to a familiar face who then switched out to another familiar face. A family member spent the hospital nights with me and when they couldn’t my best friend did. Nurses held my hand, rubbed my back, and willingly helped me any way they could that was requested or needed without fearing a 6-foot space of safety. Although at times I felt like THE patient, THE survivor, THE fighter, I was never alone.
Cancer is already a lonely place even if you aren’t alone.
I don’t think I’m sharing any brilliant ideas that will do much good other than make you readers think, “well damn, that’s depressing.” COVID-19 is something outside of our control. While we all take different stances on it and I do not pretend to think it is an issue appropriate for deep discussion on my blog, I do think the energy and positivity we put out at this time is more important than ever.
So in honor of being helpful instead of hurtful, here are 10 of my ideas for those newly diagnosed patients having to go to very scary appointments alone:
- Ask permission to record your appointments on your phone. Most cell phones either come with app or can easily download a voice recorder app. Yes, you can bring a pen and paper too, or instead of, but based on my experience having the opportunity to listen back to what was said or to play it for your significant others/family/friends/caretakers would be an amazing source of comfort because frankly ITS ALL GREEK TO ME.
- Ask to FaceTime with your significant other/family/friend/caretaker during the appointment.
- Combine 1 & 2 by either using 2 devices OR screen recording on your iPhone (Apple) or iPad. Practice BEFORE the appointment. If you don’t have Apple products, good luck because I have no idea how to help you there. If you don’t have two devices, ask to borrow from your friends and family. TRUST ME, someone will want to help by loaning you one. There is also the old-school voice recorder options which are relatively inexpensive and frankly bad ass.
- Bring a book or magazine or puzzle book. Basically be prepared to wait because honestly, unless it is Chemo or Radiation doctors are never on time. Now, don’t go reading anything crazy difficult because your brain isn’t going to be able to absorb Great Expectations (one of my faves) at this time but something light like, hmmm, I don’t know, this guilty pleasure should do the trick. Without a significant other/family/friend/caretaker there it will be easy to get in your head and feel even more panicky than is expected. Take a deep breath, tell yourself you are strong like bull, and read about some vampires.
- Bring a phone charger because you might be to anxious/scared/nervous/etc. to read or do a puzzle and can only aimlessly scroll through Instagram or Pinterest which is totally good too, just bring a charger so you can keep your phone ready for numbers 1 or 2 above.
- Obviously wear a mask. They probably won’t even let you in without one so be prepared. They should also have hand sanitizer everywhere but I always brought some for the elevator and door contamination on my way out.
- Wear layers. I don’t know if I’m the only one but between the nerves and anxiety and hormones I eventually was put on there were appointments where I was never the same temperature twice and wished I had worn layers. Sweaty pits or annoying goosebumps don’t help you focus.
- Treat yourself. You want a coffee on the way home? Do it. You wanna order those new running shoes you saw on sale? Buy away. You are alive and have a life to live even if it feels completely highjacked by Cancer and COVID-19.
- Do not Google. Do not go into the dark, dark web. And if you do please know somewhere between 0-100% (I’m not a statistician) of what you read won’t apply to you. Take it day by day. Read excellent blogs like this one (duh) and other sources that you find helpful but in the back of your mind always remember every cancer journey is different and a lot of it is out of your control. You will not be able to predict what is about to happen so try not to.
- Start a blog. Seriously, it helps to have somewhere to write it all down. I use it to remember what I went through because honestly I’ve forgotten a lot of it. I can’t wait for you to get to the point where you have to reread one of your own posts to remember what right now probably feels like an impossible time in your life.
Someday you will get to the point where each of these unknown, terrifying procedures and treatments will be a thing of the past. The video above is from my last day of radiation. It reminds me of that saying about if a tree falls in the woods and no one hears it: If you ring the end of treatment gong and none of your friends and family are there to see you did you even ring it?
The answer is HELL YES I DID!
P.S. If you’re reading this, please leave me a comment. COVID-19 sucks and I’m bored. I would love to say “hi” back or answer any questions!