When I awakened yesterday morning my first thought was that I would be getting bad news at my scan review later that day. And then my second thought was that if I was truly experiencing progression, Alice was already both aware of and on it.
Two for two.
Like some pernicious weed, my cancer is cropping up again in the same exact spots it always does. Nothing drastic yet—interval thickening and slight increase in size—but the concerning part is how quickly I have become symptomatic. That and the fact that I have now acquired resistance to three ALK inhibitors, with lorlatinib being the biggest hammer in the tool box and supposedly covering most resistance mutations.
So I’m up a bit of a creek. Last night I got a text from my youngest in which he said he was so sorry and then ‘I’m scared.’ I wrote him back saying that I was also sorry and scared but that I was strong and Alice is smart and we will figure this thing out.
At the moment I am staying the course on lorlatinib. We did discuss going up in dose but Alice felt I would experience no true therapeutic advantage while increasing troublesome side effects.
I will scan again in eight weeks and Dr. Shaw is looking into whether it would be safe to perform a needle core biopsy. One area is too close to the diaphragm and the other is inconveniently located underneath my left breast. The last time I had a biopsy it was straight through my boob (as uncomfortable as it sounds).
Hopefully that will be possible though as it could help us figure out possible avenues. Discussed so far have been radiation on the area furthest from the diaphragm and a combo of lorlatinib and some other agent.
Mostly I am sad. Feeling fine (not so very long ago) was absolutely amazing. I’m on a roll with my art/writing/gym/dating and I realize this is going to put a major crimp in things. In short, logistically life is going to get a hell of lot harder and I’m not looking forward to it.
Per the bigger picture, I’m trying to keep my head from going there. Focusing on what’s right in front of me is going to help me maintain my cool and my courage. And I’m gonna need them both.
However, I’m not in this alone. The outpouring of messages after I made a post on Facebook confirming progression has been astounding. As I left my appointment yesterday Alice and her PA Jen Logan both hugged me hard. And then Jen looked me in the eye and said ‘We’re going to fight this together.’ I know she means it.