Battling lupus and cancer during a pandemic is definitely a challenge. I have had lupus of the skin for several years, which caused hair loss, fatigue and rashes to appear on my body during 'flares.' But in 2020 — for unknown reasons, perhaps stress — the so-called subacute cutaneous lupus became systemic lupus, or lupus SLE. In addition to the extreme fatigue I began feeling immense pain throughout my body, I was pale, and would wake up with drenching night sweats.
I noticed swollen lymph nodes on the right side of my face and neck, which my rheumatologist thought may have been due to the advanced lupus. The nodes became extremely painful. I'm talking it hurt to touch, like white hot lasers pulsing through my body. He wanted to put me on Benlysta intravenous infusion therapy to help mitigate the lupus symptoms but he needed to rule out cancer first. After a series of specialists visits I finally got a biopsy that revealed the swollen nodes were indeed, lymphoma.
The following months would be filled with angst and medical appointments, tests and bloodwork, surgery and recovery — not to mention, the fear of catching Covid while fighting cancer. I also learned lupus and lymphoma sometimes go hand-in-hand and it's important to be vocal with your health care team so you get the treatment you need.
After the surgery, MRI's and a PET scan, it was onto Rituxan infusion chemotherapy to shrink the cancer and in turn, help battle the lupus pain and fatigue too. My first infusion was a whopping NINE hours. But it was worth it and I can tell you, progress is still being made as Rituxan keeps working long after treatment.
The lymph nodes in my face and neck shrunk, and the pain started to go away. What a relief! I was starting to feel like myself again and, just as important — I was starting to look like my old self again. It was depressing to look in the mirror and only see the effects of cancer.
Masking during the pandemic actually helped me mentally, because no one could see the bruised and swollen lymph nodes when I went out for treatment. I was grateful to be working from home during the pandemic too, because driving to work was more than my body could handle. Through diet and exercise I am slowly getting my strength back.
Of course, there are side-effects to having lupus and cancer. For me, like many, it included hair loss. And you know what? I'm ok with that. Because hair doesn't determine your worth, because wigs are affordable and fabulous!
Having cancer and lupus has made me look inward more than ever before. It's funny how during times of struggle — times that should be the worst in your life — prove to be the times where personal growth comes at record speed and you come to love yourself more. That is 100 percent true in my case. I have always had insecurities — really, no different than many folks' feelings about themselves — but cancer made me realize I am perfectly imperfect just the way I am.
My husband of nearly 22 years, George, has been my rock. He's been by my side and at every appointment every step of the way. My teenage sons have shown what kind young gentlemen they have grown up to be. Alexander, my oldest, drives me to many appointments while my youngest, Ian, did his high school broadcast news project for Fox 61 Student News on my health battle.
My parents, my friends, my radio family — I am just overwhelmed at the outpouring of love and support. And of course, the dedicated medical professionals who care for me — wow, I am in awe at the level of empathy emanating from these amazing heroes. I am grateful beyond words.
I have infusion chemotherapy treatments scheduled through August of 2021. I will never not have lupus or lymphoma, but I dream of being in remission one day soon.
I want everyone to know that YOU are your own best health care advocate. Please don't ignore signs that your health may be compromised. There will be challenges of all kinds, but don't give up. There are folks out there who care and will do everything they can to help, but most of all you helping you is the best thing you can do every. single. day.
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