I taught my first graduate Psychopathology class for the Fall Quarter on Wednesday. In an effort to get to know a bit about the students, I had them spend some time writing and sharing about how they would conceptualize their top five current life roles and top five values. I figured that sharing my own values at the end would be a good segueway into my communicating that I value transparency, for example, and really hate when students write the night before the final exam to tell me that their great grandma Charlotte just passed away and that they are stricken with grief. And, of course, unable to take the exam.
But anyway, I thought about and shared my own top five current roles with them as well, again in the spirit of transparency. I listed researcher, teacher/clinician/supervisor, mother of four babies, runner. And cancer Mom, the most important role I've ever had.
Aila will take her last dose of 6-mercaptopurine in less than two months. A final dose of cell-killing poison that we hope she will ever put into her tiny body. Today, her nurse practitioner sent us an email to schedule her port removal surgery. I read the email with some sadness, then some confusion about my sadness. We've begun to talk to Aila about the end of going to the "port doctor." But of course, we follow that up with saying that we will still be going once a month to the port doctor but that she will not be getting any chemotherapy. She has looked at me with her wide eyes and asked, "No more cancer, Mom?" That's our hope, baby. Our hope is that all these gallons of poison knocked those leukemia cells to their knees. Our hope is that none is still lurking and hiding, and that none will come back for a visit in one or two or twenty years time.
At this point, we've thought a lot about relapse and what it would look like and mean for Aila and our family. And not in an ominous "of course this will happen" kind of way. In the early days, I remember not even being able to think about the idea of relapse. No, no, no, way too scary. But every time she's been hospitalized with neutropenia during maintenance, it sneaks onto the table. It's unlikely, but a viable option to explain what's going on. Watch and wait, watch and wait. Much more likely that the chemo has just wiped her immunity to the floor. But relapse will always be on the table, and so I think and I fear.
But still, my grief and sadness when thinking about the end of chemotherapy is so clear and so confusing. I feel such fear. Such crisp fear that I can almost taste it as it gets caught in my throat. As Aila's mother and at this stage of her illness, I am deeply comforted by the idea of the chemo. Terrified at letting my daughter walk naked, without chemotherapy to keep her illness at bay.
But like every other stage and step, she will show us how to do it. Not fearlessly, since things have been so scary for long. No sane person wouldn't be afraid. But boldly. So boldly. Dancing and skipping, preschoolless, into kindergarten. Ready to learn letters and make friends. We will take our cue from you, Aila, whose strength is unremitting.
Comments
Angie Tana 7 years, 1 month ago
What a journey you've been on. Live bwen following your blog since the beginning of it all and I think you should keep this blog going longer to be able to share the wonderful moments soon to follow. Best wishes for the holidays. Hopefully it's filled with amazing memories.
Link | ReplyAngie Tana 7 years ago
Hi Vicky. What a journey this has been. You and your family are finally coming to a new place. A better one where hopefully all of the anxiety built up over the last few years can begin to disipate. I hope that you will NEVER have to deal with further chemo.
Link | ReplyAbout 25 years ago my neighbors child had a very similar (if not the same type of cancer) your daughter has been facing and (knock on wood) she's still free of cancer and even has a child of her own.
I hope your daughter will grow up strong and become one of the scientists or doctors that helps cure diseases like ALL.
Keep us posted and I'm hoping you have the best holiday you've ever had.
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