Stories of Lung Cancer

We tell ourselves stories in order to live.     ~Joan Didion

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A Sobering Week (Under My Bed) (Only Kidding)

 

Epidermal growth factor receptor (EGFR) activating mutation are found in exons 18 to 21 of the EGFR gene, which is part of the gene coding for the tyrosine kinase domain of the EGFR protein.1,2 In patients diagnosed with advanced non-small cell lung cancer (NSCLC), the most common EGFR mutations are exon 19 deletions and an L858R point mutation in exon 21.3–7

(https://www.egfr-mutation.com/precision.html)

May 22, 2021
The last two weeks have been rough. More fatigue than I’ve ever experienced, swallowing difficulty, dizziness, a lousy cough, and an overall general crankiness that was hard to mask. Hour-long naps in the afternoon became a necessity. I could do very little of what I wanted, including ride my stationary bike or even plant some new plants. I owe people emails and phone calls– I had no strength to do the thinking required– and I may not get to them even now. So sorry.

 

As I learned this morning in the cancer support group, the more you know, the more you are able to advocate for yourself. This morning was my second meeting with this group. They are all Portland-based; most have Stage IV metastatic cancer, which is considered terminal rather than chronic. All are conversant in details of genetic mutations specific to NSCLC (non-small cell lung cancer.) “What mutations do you have?” they asked. “EGFR,” I said, feeling kind of smug that I could answer. Nodding all around. “What exon?” they asked. Huh? I had to go back to the cytology report to see if I could figure it out. For you geeks reading at home, the mutations are in exons 21 and 20.

There are only two of us in the group who have Stage III cancer. Lung cancer is rarely detected before it has spread throughout the body, because there are so few symptoms early on. Thank goodness I have a history of asthma and am familiar enough with what it feels like to know when it feels wrong. To have been diagnosed at Stage III is considered very very lucky.

Here are some sobering thoughts.

  • No one in the group uses the term cured. The favored term is NED: No Evidence of Disease. 
  • There will be scans for the rest of my life, at least annually.
  • The Covid vaccine has likely not built up any immunities is us immunocompromised folks, but scientists really don’t know. This will have the most immediate effect on my life, I think.
  • The cancers seem to develop immunity to the different therapies over time.
  • EGFR is the best mutation to have; there’s one guy in the group with an ALK mutation and the docs don’t really know what to do with him right now.
  • Many have flown all over the country to participate in clinical trials: Texas, California, Seattle. They participate in the trials because they have run out of other options.
Dang, I’d just about convinced myself that I don’t have cancer any more. I mean, I graduated from treatment almost two weeks ago, isn’t that enough? Apparently not.
I don’t know that I’ll ever surrender to cancer, or to the idea that cancer defines me. Maybe that’s a good thing. I think it means I’m going to have periods where the re-realization of having it, and the implications of having it, hits hard. This week, it hit hard. Maybe it coincided with the physical low, but I just didn’t want to deal with it any more.
On Wednesday next week, the 26th, I go for a CT scan with oral and intravenous contrast, to see if there has been any spread of the cancer. If all looks good, I get the first infusion of Durvalumab in the afternoon. I think it has the potential to be a rough treatment.
In the meantime, my new copy of Julia Child awaits in the kitchen. I’m taking on her version of Boeuf Bourguignon, which we’ll have tomorrow after the Thorns soccer game. In the stadium! SO EXCITING! As long as I wear a mask and stay distant from others, the doctor says I’m probably OK.
Thanks for reading.
Thorns Game, Pre-Covid

 

 

 

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