I’m guessing 4 am the day of chemo isn’t the time they recommend blogging, but here I am. Wide awake. Holding the paradox of this moment. The fact that I’m lucky, and I’m not, and I’m lucky, and I’m not. (Also, amped on the steroids I have to take before chemo, which may have also, weirdly, lifted my sour mood.)

I think that sometimes, from the outside, people think that I/we have had terrible health luck. I mean, Lucas has a disability/disease with no treatment or cure. I have cancer in my 40s. Ida has a rare manifestation of muscle disease in a kid with two X chromosomes. (Burke so far: very healthy!) Some days I wish I could wish all the diseases away.

And/but, I know that some of life’s most beautiful moments are contained within and around the difficulty. I look at the people the Lucas has brought into our life, or drawn closer into our family, and I can’t imagine a better life. I feel how deeply close Burke and Ida and I are to Lucas, in part because of his disability, his need for our care, his MTM. And I am grateful. I used to say I wouldn’t wish for another diagnosis, another body, for him. That is changing as he grows and the limitations get bigger — of course I wish his life was easier. That he and we could do more things. But, the paradox. I also feel so lucky to have an upfront seat to witnessing the ways he moves through the world, with all the barriers and limitations, with such ease and grace.

And so, I am up at 4 am the day of my last chemo with such mixed feelings. I do not have that distanced perspective on cancer yet — no big gratitude for this complicated mutation — but I am so aware of how easy I have it. I am almost 47. Despite a big mass of cancer that I had growing in me until late September, I get to live past 50, likely 60 and 70, maybe 80 and 90, all of which is relatively new in human history. I have so many things I look forward to doing in all those years of life.

In the midst of it, though, cancer treatment sucks and I wish I wasn’t here. Last time, on top of all the other side effects, something went wrong at the site of my IV infusion. My arm was swollen, red, and extremely painful for days. Three weeks later, and my right forearm is still tender and my wrist feels like I have carpal tunnel. And so today I have to get a PICC lined inserted before my infusion. It’s a fairly common procedure — I’m sure Lucas had it when he was a baby. But now, the idea of a nurse threading a super thin tube from my arm up to my heart to push the chemo straight in… it doesn’t sound much better than a painful peripheral IV.

More than that, if you’ll listen to me complain, chemo has zapped my energy and I’ve felt down. The grey and dark and wet of January doesn’t help. Chemo slump plus Seattle winter is just a rough combination for my heart. And then I got a cold last week and ugh. I’ve been sleeping a lot, lying around a lot, quick to get mad at Ida when she won’t let me rest, wandering around the house restless and bored because I don’t feel good but don’t feel like resting. It’s been a rough couple weeks, and here I am. I’ve heard that people ring a celebratory bell in the infusion department on their last day of chemo. I don’t feel there yet — it doesn’t yet feel like a celebration, even though that other part of my brain that is reading about the evolutionary history of cancer and knows I’m fortunate to have this treatment. Also, “done with chemo” means I move on to the next phase: 5-10 years of hormone drugs.

In the vein of paradox, I’ll leave you with the things that have been sustaining me (I mean, first friends and family, but they don’t fit in the small space at the end of this blog.) Humor and heartbreak. Reading/watching/holding both the brilliant and ludicrous (shows like Lady Dynamite and Atlanta, which throw the humor right up next to the sadness) and the grief (so many of my books, which of course also make space for the love and hope). And so, I’ll leave you with both. The heartbreak from poet Andrea Gibson, which speaks to me about embracing the hard, about embracing loving and living fully. And the humor thanks to Julian, Dan and Dana and their collection of silliest New Yorker cartoons. This one made me giggle and giggle.