In August, after a long retreat from social media and a series of appearance cancellations, I shared with all in a post on his blog that our older daughter, Alex, has cancer. You can read that post here.
Now, several months later, I wanted to offer an update to that original post, and to share some positive news.
Alex is still undergoing treatments, but her doctors have transitioned her from chemotherapy, which in her case was VERY effective, to what they call a maintenance regimen. Essentially this means that the cancer has been knocked back by the chemo. In many places where she had malignancies, it’s impossible to tell she ever had cancer. In other spots, the cancer remains but is greatly diminished.
The maintenance regimen is intended to keep the cancer in its present, reduced state. It prevents new or renewed cancerous growth without inflicting the kind of side-effects Alex suffered through while on the chemotherapy. Put another way, her doctors are now treating her cancer as a chronic condition, one that can be managed without an invasive and devastating surgery, and without further use of drugs that sap her of energy, make her feel rotten, and cause her hair to fall out.
The sobering news is that, at least for now, they do not know if her cancer is fully curable. It may be that they cannot say “her cancer is gone and it’s not coming back.” This remains to be seen. The reassuring and offsetting news is that they can keep her on the maintenance regimen indefinitely, for the rest of her natural life if they need to. Because Alex responded so well to the first chemotherapy “cocktail” they tried, her doctors have plenty of other treatments they can use on the off-chance that the cancer reasserts itself. And research on exact DNA mutation that caused Alex’s cancer may, before long, yield even more effective, and possibly curative, treatments.
And so it seems she is on a good trajectory, if not yet cured.
I have to admit that adjusting to this outcome has taken me some time. I have lost my mother, my father, and my oldest brother to cancer. I am a gold-circle member of the “Fuck Cancer” club. More, I am shaped by a 20th century view of cancer as a binary phenomenon. One has cancer or one doesn’t; one beats cancer or one dies from it. That has long been my understanding.
But 21st century oncology is not always like that. For some patients with some forms of the disease — including Alex and hers — cancer is something that can be lived with, controlled, kept in check.
From the start, I have wanted nothing more than to be able to announce to the world that Alex is cancer-free. For now, that is more than I can say. But short of that, this is as good an outcome as I could have hoped for or imagined. We will worry each time Alex has a new set of scans to assess the state of her disease, but that was going to be true under any scenario. What matters is that she feels fine, the symptoms associated with her cancer have gone away, she is otherwise healthy and happy, she is working, seeing friends, having fun, living her life, looking forward to the return of her gorgeous hair, which has been an identity marker for her all her life. And the rest of us — Nancy, our wonderful younger daughter, Erin, and I — are breathing easier and recovering ourselves from the emotional ordeal of the past eight months.
I want to thank all of you for your support and friendship during this period. Every expression of concern, every word of sympathy and encouragement, every act of kindness has meant more to me than I can convey.
I look forward to returning to a more normal routine. I intend to be more of a presence online. I plan to attend more conventions in the coming year. Having re-started the newsletter, I will continue to publish it monthly, with the usual giveaways and previews of upcoming releases. (You can sign up for it here!)
Again my thanks to all of you. It’s good to be back.