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Two years

Today marks the second anniversary of my cancer diagnosis. I would sum up the past year like this: less trauma, more normalcy. 

No hospitalizations. No bad news (other than the less painful/less expensive blood thinner making my hair fall out). Fewer health insurance hassles. I got COVID, but it didn't affect my lungs at all. My lung function has improved dramatically, and I'm still making gains every week with strength training. I'm now at intermediate level on nearly every exercise, having progressed from beginner and then novice. 

When I was first diagnosed and endured the pulmonary embolism nightmare, I wasn't sure I would be alive in 2 years (the 5-year survival rate for lung cancer is very low -- most of us are diagnosed at late stage, in part because there is no screening for non-smokers). Tagrisso has turned out to be a miracle drug. Compared to 2 years ago, I am able to live a normal life...about 95% of the time.

And yet, cancer is never far from the surface. I am reminded that I have cancer when I:

  • take Tagrisso every day
  • experience Tagrisso side effects
    • extremely slow hair growth (I now have whispy hairs growing in all over my head after the aforementioned hair loss, but it will be years before they blend in)
    • changed hair texture (I'm not a fan)
    • fingernails that constantly flake, chip, and break
    • frequent leg and foot cramps
  • get twice-daily blood thinner shots
  • pack all my meds for trips
  • remember my previous life as a hardcore runner
  • need to use my portable concentrator while exercising and flying (although less than before)
  • have to get my pulmonologist to sign a portable concentrator authorization form every time I fly
  • get a CT scan and go to oncology appointments every 3 months, plus annual MRI
  • feel nervous about an upcoming cross-Atlantic flight in September
  • avoid traveling to isolated areas far from high-quality medical care, like the remote peninsula in Belize where we honeymooned and then took PSU students 3 years later (Leland barely made it out alive during the latter trip - a story for another time)
  • feel a sense of apprehension and uncertainty about making long-term plans (e.g., retirement).

I'm aware that my list could be longer or worse. For example, I'm grateful that I haven't experienced the nausea and terrible rashes and skin conditions that often accompany Tagrisso and that I haven't had to undergo chemo or radiation. I have no pain. Most importantly, I have a strong support system of family, neighbors, and friends near and far who hold me up and check in on me or are ready with a compassionate or a snarky comment, whichever fits the situation best (sometimes both).

So, two years into my diagnosis, what am I? I don't identify with "cancer survivor" because to me, this term connotes a cancer story that does not fit me or many other people: there is no cure for my cancer, it's not in complete remission, it wasn't (and can't be) removed via surgery, treatment is not over. I will always be in treatment. Cancer is not a thing in my past that I "survived" and can look at in the rearview mirror, like "thank God that is over with!" It's very much in my present, although currently under control and not spreading because of Tagrisso.

If I'm not a cancer survivor, what other options are there? Cancer patient sounds like I'm sickly and on the verge of being hospitalized, which is no longer the case. It is accurate -- but also, frankly, kind of boring -- to say that I'm a person with cancer. An alternative occurred to me: cancer prancer*. I am "walking or moving in a spirited manner"...with cancer.

And so, I will prance on. 

*I just discovered that a woman with non-small cell lung cancer had a blog with this name. She passed away a few years ago at age 40. She was a research associate on the Female Asian American Never Smoker (FANS) study, which examined the rapidly rising incidence of lung cancer in this population (57% of Asian American women and 80% of Chinese American women with lung cancer have never smoked). 

Here is my public service announcement, again: if you are uncharacteristically short of breath or have a cough that won't go away, get an x-ray and CT scan. Don't chalk it up to aging or ___!

Comments

  1. I thank God that you are here on this earth to speak up and inform us about cancer and what it means to live with it. Thank you for your many insights of the medical protocosl which you had to engage and fight to be heard. You had to undergo so many physical, emotional and faith challenges. You are a fighter, He has designed that that way for sure. Looking forward to reading posts about your summer. Hugs!

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  2. Thanking God for you, Esther, and for your life!! So grateful for your friendship. ROCK ON, cancer prancer!! :) :)

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    1. Thank you, Irene. I've appreciated your support throughout it all.

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  3. Your reflections are moving, thanks for sharing them with us! <3 the big C gets around in my circle, so I like that cancer-prancer moniker.

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    1. Thank you, Brenda. Yes, lots of cancer all around. :(

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  4. Don't know if it still exists (your kid could say) but on College Avenue there was an under-21 hang out (with smoking allowed, yech) called Chronic Town. Assuming it no longer is in business, you might consider cultural appropriation of this term. The cancer prancer is one possibility, sure. But some folks would just say "chronic."

    Thrilled the team The Coach have invited you to stay in the game, and that you continue as the star. Let us know when you'll visit in August.

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    1. I love the cancer prancer notion... keep prancing! And thanks for sharing.

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    2. Thank you, David and David! Not sure we'll make it to Pgh in August, but I'll keep you posted. I appreciate the invitation. I do remember Chronic Town - never went in there.

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  5. Cancer prancer, prancing Prins. Thanks for sharing what your new normal life is like. ❣️Annyce

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    1. Thank you, Annyce. If it were you, I'm sure you would incorporate pole dancing. :)

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  6. So happy & proud of you for how you’ve dealt with it all. Happy anniversary of no bad news, no hospitals and yay Tagrisso 🥳 I’m just giving praise that is due to the Lord for how he has blessed you & continues to move you forward. Cancer prancer? Sounds good to me! 👍🏽 Continue to live in joy and to the glory of God. Much love 💕

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