I had scans on July 18. Chris and I were leaving for the annual ALK Positive summit, which was in Nashville this year, and I had a planned oncologist appointment for the following Tuesday. For the first time, I wasn’t really anxious. It was either going to be good, in which case I bought some more time to make decisions about my surgery, or it would be bad, in which case I’d need to speed up the surgery, get a biopsy, and possibly switch to my next line of treatment.

The results were supposed to be manually released, and I wasn’t supposed to get them until my oncology appointment. They were released early, and I (obviously) couldn’t help myself. They were good—better than I’d hoped. The spot in my lung, where my primary tumor is/was that had been lighting up, resolved itself. Everything is stable. We celebrated at Jersey Mike’s and headed off to Nashville.

Nashville was incredible. It felt soul-filling. I love all things that involve being around other ALKies. It feels like the hardest struggle of my life is genuinely understood. I created the 2024 memorial video. I did it because I wanted to honor Ernest and desensitize myself to watching it. The 2023 video hurt too much. I wanted to do this one so I could emotionally prepare for the level of sadness it would bring.

The LA ALKies are a great bunch, and we all kinda stuck together. Chris and I spent all weekend with Matt and Karen. They are both doctors (Karen is a surgeon, Matt is a radiologist and the ALKie). Matt translates all my PET scans for me, and both of them have been there for me when I’m losing it over what I should be doing. We are about a month apart on diagnosis. They also have two young boys. It was at their recommendation that I went to MD Anderson, canceled the surgery I was going to have at Kaiser, and met with another surgeon at UCLA. We had a lot of fun with them and everyone in Nashville.

My surgery is currently on hold. I’m deciding on the next best steps right now. With the spot resolving itself, I feel less urgency. I’ve met with some very experienced surgeons. My oncologist has always been against the surgery, and she reiterated that to me. I was able to hear her, versus my usual tendency to ignore or discredit something I don’t fully agree with. This was big for me. I may move forward with biopsies to see if there is active cancer in my lung and lymph nodes. That seems like a good first step to gather information before deciding if I’m going to remove my lobe.

Lastly, I wanted to share the article from the ALK Positive newsletter that was written about me. I was asked to be the spotlight patient for July.

Here it is: ALK postive July 2024 Patient Spotlight