December 9th 2019. January 22, 2020. March 4, 2020. I remember these dates because they were all “action” days in my treatment plan for cancer. Blood draws every Tuesday. Radiation starting March 29. A stat scan and kidney flush over Memorial Day weekend.
I suspect all this took root along my memory banks because of the shock of a cancer diagnosis. In truth, I remember it all (or almost all.). My white blood cell and kidney function numbers, the side effects, chemotherapy drug names, tips I’ve learned and what a bad day looks like.
I like to think that this random data has navigated into one place in my head, living off to the side, somewhere near the temporal lobe, under the label “The C Folder.” There are a lot of us walking around with C folders in our brains. It’s hard to avoid since the experience is so enormous.
And many end up wanting to share or improve the cancer journey for others because of that stored, hard-won knowledge. Some make big moves like starting a charity or changing career paths while others volunteer, or write, or start community forums. With so many variations of the disease from its location to stage and grade and treatment plans, there is so much to pass on.
I thought I might add just a few things I’ve learned in no particular order:
- Many women look awesome in wigs, but I found them to be uncomfortable. You need to wear a wig band to hold the wig. If you wear glasses of any kind, pushing them under the band for an extended time is tight and becomes uncomfortable. In warmer climates or during the summer, they are hot. Lighter weight scarves worked really well for me.
- The term “bone ache” is associated with certain drugs administered after chemotherapy. The purpose is to stimulate your bone marrow to make new white blood cells needed to help fight infection. It’s an accurate description.
- Randall Munroe is a cartoonist who created Webcomic XKCD. He covers many topics, but his work on what it feels like to live with someone with cancer is poignant, funny and highly relatable. The series always brought a laugh and a lot of empathy during my treatment. Here’s one example:
- Snail-mail or e-cards expressing support are surprise bursts of happiness. They always bring good vibes to a bad day.
- Buy thank you cards in advance for any gifts you may receive.
- Dexamethasone is a steroid used prior to chemotherapy to protect against allergic reactions. If you are someone who monitors your blood glucose, your numbers could rise significantly and fall slowly over a period of time.
- Try to connect to your cancer community. They GET it. This can include conversing on blogs, in-person (or zoom) support groups or websites such as navigatingcare.com which includes a support component. It also provides a “Library” of information. If your doctors’ “partner” with this site, it will then include your lab results, appts and tailored-made content for you.
- Once you’re past the nausea, popsicles are awesome after chemo sessions.
- If you have a port-a-cath (a device that is surgically implanted under your skin) that allows staff to draw blood and give treatments, request a prescription for Lidocaine which helps numb the site for insertion. Apply one hour before and place a small square of Saran wrap on top until use. They do offer a numbing spray on site.
- The term medical oncologist applies to a doctor who specializes not only in chemotherapy or immunotherapy related to cancer, but is also a specialist in the field of Hematology. I always call him my chemo doctor, but he’s more than that. He can treat any blood disorder.
- The nurses in infusion suites rock. They have multiple patients streaming in throughout the day. Some just need a single shot (like B-12 or Prolia) while others have 2 hours of pre-chemo meds before the main 3-5 hour chemo drip begins. Machines beep endlessly with empty bags requiring removal or starting a new drip. Oh! And they also return phone calls from patients not feeling well from the day before and reach out to doctors with questions on someone’s treatment.
- Ultimately, your strength always matches the challenge. It’s an amazing dynamic.
And of course, the most obvious I guess, is that part of this world of cancer will stay with me. But it’s not all bad. I have learned to advocate for myself and verbalize what I need much more assertively than in the past. I’ve developed a “let’s do it/no time like the present” attitude which includes sorting through closets, throwing stuff out, completing an old family project and tackling some financial tasks. I have also signed up with Quest Diagnostics to be part of their research database; allowing them to contact me with relevant surveys as well as possible participation in research studies.
But the most heartfelt page of this folder in my head? It’s that the holidays proved particularly special because I remembered everything. Remembering made me see that the Christmas tree lights were brighter, and the presents more meaningful. While preparing meals, I would often break out a dance move in the kitchen. It was a euphoric and triumphant feeling. It’s the kind of gratitude you will only feel if you do hold onto certain memories.