I am having great fun watching these music-video parodies, which are knowledge translation about evidence-based medicine:


(Originally seen via Lamaze’s Science & Sensibility blog)

I “should” be working on my delayed paper for last semester’s Critical Inquiry class, which I am looking forward to digging into, but there is so much else to do right now that–imagine that–I haven’t done so yet.  I still don’t know when my appointment is, with the Albany Med Neurosurgical dept. and the interventive radiologist, to discuss, plan, and schedule the brain treatment.  Weird…the more serious it is, the less likely you are to have an appointment?  If I needed a wart removed I would surely have an appointment.

Meanwhile it’s New Year’s Eve and my family is going all electronic-gadget-programming-happy downstairs, it has started to snow, my desk is organizedly piled with things I need to do, and I really need to update my kanban board (see here for what this is if you want to know more than “a very organized to-do list”).  But I think I will go downstairs, have some food, and sit in front of the fireplace for a while.  There is a rumor of bagels.

life goes on and dysfunction does too

I’m back from Baltimore and it’s the middle of week 3 of my chemo cycle, so I am busily trying to DO STUFF before next Tuesday. There are many things that need doing before the end of the month, and I’m assuming that Tuesday through Saturday or Sunday next week I won’t feel much like doing them. So, in an ironic turn of events, I’m finding myself piling on the to-dos this week, and feeling anxious about not getting them done, in an attempt to give myself a break next week (and not feel anxious about not getting things done).

Hmm. I’m sure I should think on that some more, but I don’t have time! Gotta go. 🙂

end of week three

The past few days have been wonderful, despite my hair coming out gradually. Luckily, we really do have thousands and thousands of hairs on our heads. It doesn’t look like it’s thin yet (except to me).

I attended a great birth on Friday, a day when I had lots of energy and no plans I had to cancel. Our friends had a whoppin’ baby after only two hours of hard work–and a lot of fun labor time before that–and my niece and I (she was doula’ing too) got home by midnight. Everyone is happy. I am very happy not to have had to miss that one because of chemo or something else…triumph!

Yesterday I finished teaching my three-night childbirth class to a couple in Stuyvesant who are due in two or three weeks. My friend Sarah is their doula (I said I was not going to be able to do it). That was fun. And I visited my friends and their newborn at home just before I taught, for their first postpartum visit. Before that I got my day-before-chemo massage and even got my teeth cleaned. It was our 12th anniversary yesterday–wow. So my last day before chemo–excuse me, before being lucky enough to be able to accept this strong medicine into my body–was a great Well day.

no news is good news

I have felt good for the last week and have been often pretending the world of the sick has nothing to do with me. Except for some web research in an attempt to figure out how better to manage the queasiness next round. I haven’t been thinking much about the larger issues of getting rid of breast cancer, so I haven’t had much to add here.

Oh, but we did go to the initial genetic-testing appointment. More on that later. It was more of a dis-appointment.

I notice my life is beginning to be keyed to the chemo cycle rather than the months of the year or the phases of the moon or any other repeating pattern. My personal cycle has three weeks: the chemo week, which starts with chemotherapy on a Tuesday, and when (at least the first time) I felt pretty yucky; the middle week, when (at least the first time) I got to feeling better and regained a lot of energy; and the dread week, ending the day before chemo. We are in the dread week now. It is physically easy but mentally harder than the middle week. Whenever someone asks, “When is your next chemotherapy?” or worse, thinks it is this week, I feel grumbly in a sort of “DON’T remind me!” way.

I am dividing my time between living my regular non-cancer-patient life and reminding myself to do things now that might improve the experience next time around. Even though that means slipping into the world of the sick again. Like calling the oncologist to discuss anti-emetics and other phophylactic treatments…haven’t done that yet. Calling the TCM doctor to ask about scheduling more acupuncture for next time, even though I am not at all sure it helps (did that–thanks, Lisa!). Researching how other chemo victims have handled nausea (did that) and following up on their ideas (vitamin B6…on the grocery list). Picking up the rest of my Marinol prescription at the grocery store! Did that. (had to put an easy one on the list) Marinol, the medicine derived from marijuana, says in the side effects list: “excessive feelings of well-being.” I wish.

I have been teaching childbirth classes and going to meet with a new doula client, all the time waiting for a friend of ours to have her baby Any Minute Now. I am attending this birth with my 18-year-old niece Natalie as the other doula, which makes me quite happy. I have one more class to teach for a couple due in a few weeks, another meeting with my latest client, and some classes to plan out as well (I might be teaching at our nearby hospital in a few months, if they like what I put together). I also got notification today that I am all set to take the Lamaze Childbirth Educator certification exam one month from today…they accepted my application as an “experienced educator” and to be certified by Lamaze all I have to do is pass the exam! Correction: all I have to do is not feel too sick to take the exam, on day 4 after chemo 3, and then pass. (Or I can defer until April.) So things are happening on the birth front, which feeds my spirit.

the stuff I want to be doing

What I’ve done for the last few days/plan for the next few days:

Last Thursday: doula visit
Friday: birth
Saturday: family outing, then be useful to a friend because of being a “birth person”
Sunday: postpartum visit to Friday’s new parents
Monday: initial meeting with potential doula clients
Tuesday: work on doula-client filing system, fill out doula forms, revise handouts
Wednesday: visit birth center with Kristin and Pat
Thursday: ? maybe revise those handouts I didn’t get to!
Friday: come along on prenatal visit to Natalie’s doula clients


waiting on a baby in the midst of all of this

I am still waiting for my doula clients to have their baby (the due date is today and the mom is 3-4 cm. dilated already) so as usual I’m juggling the various places I have to be, carrying my cell phone and birth bag around, and hoping the baby arrives before Friday or after.

I have loved working with this family (since June) and put a lot of thought into what I should tell them about my situation. I didn’t want to stop being their doula…I didn’t want to hide from them the fact that I would be less available to be at their birth over July and August…and I didn’t want to lay my breast-cancer burden on them and have part of their birth worry be about me. Births are not about me, and having clients concerned about me rather than the other way around just doesn’t feel right.

I had my first surgery when I had already planned to be away, and when they were a month from their due date, so I waited to tell them anything until after that, when I knew more. About a week after the surgery I met with them, along with my main backup doula, and at the end of the meeting told them that I needed to have some surgery and would be unavailable another stretch of days besides my vacation week (which they already knew about). I didn’t say what kind of surgery and clearly gave off no please-ask-me-what-it’s-all-about signals, though I’m sure they wonder.

To schedule the re-excision, the surgeon gave me a range of reasonable dates. I picked the surgery date I thought gave me the best chance of still being at their birth–the earliest date I could get (which suited my other scheduling needs too). After vacation, I met with them again with my other backup, so they would know them both, just in case. This doula was going to be on call for them during the re-excision days, since my primary backup for this birth was on vacation that week.

Three or four days after the re-excision, I was feeling pretty good and ready to go to their birth. The moon was full, their toddler had predicted the baby would be born right then, and I was ready…but no baby. Now it’s a week later! And I’m talking to them every other day and working out backup coverage for the hours I will be in Boston on Friday. I guess this challenge is at least diverting…

I haven’t told them any more details of anything going on with me–and when I’m talking to them, thankfully, I enjoy so much focusing on them, and I don’t even think about myself or this whole cancer thing. It is a full-consciousness break from the world of the sick, somehow, and further confirms for me that this work, supporting women and families in pregnancy and birth, is what I need and want to be doing.

I feel pretty clear that telling them what I’ve told them so far is the right thing to do, from the doula perspective, but I can see how it looks paternalistic (maternalistic?). I think I will end up telling them afterwards, when my postpartum visits with them are over. Assuming they are curious–if not, I won’t bring it up, I don’t think.

I spent so long trying to figure out what felt the rightest to do in this situation–I hope in the future I can arrive at the same level of comfort with a conclusion by a shorter, less thought-consuming path.

what I dare to think I’ll be doing this fall…

…between chemo treatments.

September 17: CABC board meeting in Valley Forge, PA

October 13-15: Midwives Alliance of North America conference in Baltimore (I’m presenting)

November 8: 15-minute presentation at the APHA in Boston on our MANA statistics Web system

November 11: nephew Jacob’s bar mitzvah in Madison, WI

November 22-26: Family Thanksgiving celebration in San Rafael, CA

Am I nuts or just stubborn?

the 5th floor

On my way up and down the elevator from Nuclear Medicine the day before my first surgery, the doors kept opening on the 5th floor, where there was a big bright cheerful sign:

Morrell Center for Childhood Cancer and Blood Disorders

Every time, I kept thinking, thank goodness this is about me and not them.