How to Just Be

November 17, 2022

Struck by the synchronicity: On November 7, 2016, I was sitting in the infusion room getting my first doublet dose of chemo, looking at a 5% chance of surviving five years and feeling scared, overwhelmed, sad, mad and fragile. When I look at the picture of myself and that first infusion, I can’t help but wonder where that woman has gone. She was angry and pissed off that she was being asked to walk this path, and rightly so. I feel so much compassion for what she/I went through on that day. Determined to make the best of a crappy situation, spinning her wheels trying to find someone or something to blame. She/I was afraid of becoming a burden and of not being ready to say goodby.

November 7, 2022, six years to the day later, I was a floor away from that same infusion room preparing for my umpteenth PET/CT, laughing and chatting with familiar faces about Thanksgiving plans. I am having a difficult time putting into words this juxtaposition of events. Am I still that woman in the picture? Six years of cancer treatment has changed me, how could it not? I’m a specialist now when it comes to my own personal disease and there are times when I’m still sad, mad and fragile. My biggest fears remain the same, I am most afraid of becoming a burden and of not being ready or willing when the time comes to say goodby. I have the blisters and calluses of a trekker and the vision of a seeker, walking a road that I wouldn’t wish on anyone. 

In May, when I was in the hospital with a small bowel obstruction, I came the closest to date to facing my deepest fears. There weren’t any good options if the obstruction didn’t resolve on its own and I found myself at the mercy of fate. One of the surgeons bluntly told us that even if the obstruction did resolve I needed to prepare myself for more of the same, be it weeks or if I was lucky, maybe I’d get a few more months. My cancer was once again progressing and the damage was all too clear. 

A lot can happen in six years, a lot can happen in six months. My November 7 scan showed no change from the August scan, “Scan is stable…No growth anywhere!” . There are a couple of lymph nodes we are watching, my tumor markers remain in normal ranges and while I am still dealing with treatment side effects, I am not noticing any cancer symptoms. Mobocertinib has been a miracle drug for me and I cannot thank those responsible for stepping out of the box and prescribing and supplying this drug enough.

Six years since that first chemo infusion and five months into my seventh line of treatment I find the emotional roller coaster exhausting. But I’ll take it.

I’ll take all of it. 

Telling Stories

We all have our stories. Our stories after all make up the tapestry of our lives. Several months ago, I was approached by Health Monitor Network wanting to feature my lung cancer story in their ‘Advanced Lung Cancer’ edition. A ninety minute phone interview followed by a 4 hour photo shoot and this is the final product. Jim and Tess handled their roles beautifully with Tess stealing the show showing off for the camera with a smile on her face and a dance in her step. She continues to amaze us with her resiliency.

I am honored and grateful that Health Monitor Network chose to share our stories, may they reach far and wide. Lung cancer remains the #1 cancer killer in the US, more than colon, breast and prostate cancers combined. Yet the dollars spent is drastically, unfathomably disproportionate in federal spending to other cancers. These statistics are beyond unacceptable and the only way the statistics will change is if our stories are told and action is taken. Share our stories. Change the statistics.

We ALL have lungs.