I got sucked in.
and without realizing it, I got stuck in the identity of “cancer patient”. Not astrophysicist. Not change agent. Not super(busy) mom. Not friend, or equal partnered-spouse.
It was an accident. And it was a mistake.
It was a mistake that (along with sky-high blood pressure and racing heartbeat from my trial medication) landed me in the hospital two weeks ago, and that has caused me no end of terrible thoughts as I suffered as my body got used to new heavy-duty trial medication and what turned out to be a kidney infection (or infected kidney stone?) on top of that. I was in bed for almost a week this time, on top of similar trouble just two weeks ago, and it’s not a good place for my head to be. And when even doctors shake their heads sadly at your patient history, it just reinforces that, and I’ve seen a few lately.
I thought, I honestly thought, that I was dying.
But I’m not. Well, no more so than we all are, said my oncologist just now, and I needed to hear that. I needed to hear that a lot.
Yes, I have Stage IV cancer. Yes, again, the fourth cancer in less than four years. Yes, it sucks. Yes, my next PET scan is scheduled for April, and we may see bad things. But we may see GOOD things. There is real hope that this will work, and I have to cling to that in more than a pretty little poetic way.
But more than that, I need to forget about it sometimes too. I need to spend more mornings doing things like making homemade frosting with my kids, and volunteering at their school. I need to throw myself into the work I love, and remember why I love science. I need to be my husband’s dinner partner again, instead of the woman he has to bring things to because she’s too weak to get out of the damn bed.
And to do that, I need to leave this cancer identity here, at the hospital, today.
And I need your help. In my toddler planet email box are nearly 700 emails. Some are brimming with excitement, full of ideas for projects that people want me to help them with, to be the face of cancer patients, to advocate, to raise money, and I need to say no. Some are ideas that I started, like blogging my clinical trial experience for ACS or the lymphedema sleeve connection that I made and asked you to help me publicize, but that then got out of control. Some are people wanting to do things for me, to send me things, to take my picture, to tell me about Cleaning for a Reason that will clean my house, to help. To help. Some people just want to visit the sick, and we are told explicitly to do that in the Bible and in faith traditions, and it’s lovely and wonderful and generous and
I can’t take it.
I don’t know how to say no to kindness, but I need to learn.
Because I need to get out of bed, push myself a little more each day, and find those other parts of ME again, to make this life that I’m fighting so hard for really be worth it again.
I’m taking extraordinary measures to live.
It needs to be MY life again. Not that of a cancer patient, living with either a fear or an expectation of death.
To sum up (and I’m sorry to ramble), I asked my oncologist today to tell me, straight out, whether I was dying or not. She said not now, and that there are more chemotherapy drugs to try if the trial drugs don’t work. We need to try this. She wouldn’t do this if she felt it was time. And there is hope of getting better.
After all that, I had still had trouble understanding her words, given how I feel, so I asked her, in mom-terms: So, should I sign the kids up for swimming lessons or call hospice? She looked me straight in the eyes, put her hand on mine, and said
Swimming lessons. No question.
But first, friends, I have some work to do in that email box. I’ve had trouble finding the words, but I think I have them now: “No, thank you.”
If you get that email this week? I love you. I love that you were so thoughtful. I love that you care about me. But I can’t act like a patient anymore, unless I want to keep being one. And I don’t. I want to take my kids to swimming lessons!
Edited to add: My labs just came back. Neutropenic. (My white blood cell count is too low.). No treatment this week. No crowds. Lots and lots of washing of hands for me and everyone around me. Did this cause the weakness that made me so afraid that my body was shutting down? I dunno, but it surely didn’t help.