This morning I woke up at 8. It’s 10 am and I have already:
had bad back pain and gotten Eric to rub my back before putting on the three-times-a-day pain lotion
slathered my fingers with another kind of pain lotion because they hurt in a bad-cold sort of way
thrown up out of nowhere
tripped on the walker I was leaving at the top of the stairs, had nothing to grab or break my fall with, and landed flat on the floor kind of howling
wondered, at the end of all this, why am I hanging in…
Maybe soon it will be time for breakfast?
Yesterday we went to Shivani and Jon’s wedding. This sounds simple but it wasn’t, and almost all the ahead-of-time detail work that made it as simple as possible for me was thought of and executed by Eric with generosity and self-motivation. I am lucky in my long-ago choice of partner, for sure.
The wedding was at 11 am by the side of Ooms Pond. It was a chilly summer morning but, politely, it only rained for the actual ceremony, not the waiting time before or after. It was a light rain and its biggest annoyance was that its noise on umbrellas made it hard to hear the vows.
I sat in a big collapsible chair borrowed from Emilie and tried to take some interesting pictures. I got wet but not too cold and was very, very glad to be there and feeling all right (other than tired).
Life keeps trickling by with nothing that calls itself out as news-worthy. Aka blog-worthy. The bar is higher now that one-handed hunt-and-peck is my main route of written-word production. Using dictation software is also an option but it is hedged about with caveats and requirements. I don’t always feel comfortable spooling along my thoughts for this blog aloud with others nearby. If I am dictating and people walk in talking, the software picks them up and plops in some garbled version of what they were saying. And even when it’s just me there are lots of errors to fix.
Yesterday was the International Day of the Midwife so maybe it’s time to share a bit on my midwifery research project that is on hiatus now but may someday be…rehydrated?…and back on the to-do list.
When I was diagnosed with metastatic breast cancer, I was about 2/3 through with a distance program for CNMs and CMs offered by The Midwifery Institute at Philadelphia University. I had been hatching my own research study based on my Philadelphia University research project, but I realized when presenting my work so far at the 2014 MANA conference that my results really weren’t a strong argument without better data. Luckily, as one of the architects of the MANA Stats Project, which provides a way practicing midwives can provide high-quality data on their care, I saw that where my data was lacking was also a general lack in the quality of our data. So we on the MANA Stats team added a few more questions and as of about a year ago, we have been collecting data that will work much better when analyzed for my length-of-pregnancy project.
I am excited about myself or somebody else re-running my study with this better data whenever it has been validated and can be used for research–pretty soon now, I think. That will be a big accomplishment, if I make it that far with enough mental stamina to keep on track doing that kind of analysis and writing. I will have help from my researcher friends who volunteer with me on MANA’s Division of Research. However, one thing I realized when I presented my work so far at the 2014 MANA conference, to an audience of about 40 very interested midwives: that was maybe one of the best 90 minutes of my life. So even if I don’t get to continue with this particular project, I feel like for me that was the apex of it and I got to experience it without any compromises. I guess in some ways I am a teacher at heart.
So that’s what’s going on in the currently offline research mind of this “midwife scholar.” Philadelphia University was sad to lose me as a student but they named a new research award after me to keep my name around. First recipient? Me!
new research award
Over in the world of MANA, there is a new poster-presentation contest each year at the conference to encourage entry-level research and project descriptions. I have gotten involved in that, as well, and lo and behold, they went and named the contest after me. A very good way to get me to put energy into it 🙂
One really lucky thing I see having happened in my life is all the work I did to get ready for the CM program and then the courses I took in the program itself. Things like pharmacology, which I did not enjoy and did not really see the point of at some times, have really helped me and served me well as I turn my concentration and what expertise I can muster to metastatic breast cancer. Having a disease like this means, to me at least, becoming an expert in your own case and care. I do it not because I don’t trust my care providers, but because it helps me feel a little bit like I’m helping drive the bus. Even though this particular bus doesn’t maybe take much direction in the end. So although I had to give up on grad school, it has helped me immensely in the last two years, for which I will always be grateful.
Wow, my teenage neighbor and fellow QIVC member Bella shaved her head a couple of weeks ago to raise money for cancer research and remember and honor some people in her life who have had cancer. I just had to go watch the mass shearing in the high-school gym, where Bella and dozens of other teens bravely said goodbye to their hair when it wasn’t even spring yet!
Lisa and Aaron, who visited to help out (tremendously!) for the past few days, did the clay-dye job the other night in the bathroom with friend Anne while Jesse supervised from the bathroom shower.
Hmmm, I look a little tired in that last photo. Yesterday was my fullest and most energetic day in weeks. Shivani and I went to midwifery peer review, driven by Lisa and Aaron, who explored Saugerties. Nowdays I pay the next day for days like that–just in fatigue.
Plans for the rest of the day: a visit from the palliative care nurse, and before that some craniosacral therapy with my friend Meg. Then maybe a nap or Netflix before dinner.
I am still working on those voice memos for the blog. Let me know if they don’t work for you–hoping they are easy because they sure are easier for me.
Now for lots of pictures! I am really enjoying pictures these days.
The clay hair color (thanks, Arti!)
Messy.
Getting it all over.
Leaving the staples/incision alone
Jesse in the shower
Results!
Lisa and I
Plus Aaron
Me at peer review
Today after shampoo. It really doesn’t last that long.
If your interest in this blog extends to our July 2015 family trip to France, you can read about it and see pictures here.
Kale & fruit smoothies every morning: kale from our garden, 1/2 banana, 1/4 cup frozen mango, juice from half a lime, 2 oz homemade kefir, 2 oz OJ, big scoop of glutamine powder for neuropathy, 1 tsp flax-seed oil for omega 3s. Gradually adding more & more kale. I think I would be happy drinking almost anything if it had enough lime juice in it.
Wheat berries for breakfast: soaked & cooked, with a bit of fakey butter, maybe a dribble of maple syrup (thanks Charlie P.!) and salt.
Kombucha that we make at home, with fruit. The latest batch has peaches and ginger.
Sushi dinners: how cancer-fighting of me! They include these cancer-fighting foods: fatty fish (salmon), seaweed, green tea, sometimes shiitakes. A must for the anti-cancer lifestyle.
Homemade low-sugar granola. I have perfected my recipe for almond granola with little enough sugar & oil that it seems reasonable to eat as a main cereal (not just a sprinkle-on-top cereal). Now my issue is: I can’t die anytime soon–who will make healthy granola for my family?
P.S. Well, they do, but they’re fried. Except if you make them at home and bake them instead (6 min per side @ 350).
I spent last Saturday through Wednesday in New Orleans visiting my mom with my friend Anne. We went to one Mardi Gras parade (Krewe de Vieux), one party, one jazz club, one magical outdoor restaurant with live music, and one seafood restaurant with char-broiled oysters, and took a trip Uptown and a trip across the lake to get Anne to her oral-history interviewees (she had work-related reason for being in New Orleans…I was just running away from home to be with my mom!). We had delicious post-parade gumbo at Paul’s house after the first of many stop-ins at Cafe Rose Nicaud on Frenchmen Street. Anne & I also took the ferry across the Mississippi to Algiers and back, walked around the French Quarter, visited the Voodoo Museum, and bought a muffaletta (famous Italian sandwich of New Orleans). Other New Orleans items we purchased: po’boys, pralines, and a red Mardi Gras mask with lace and feathers (Anne). We did not patronize any drive-through daiquiri stands.
I got a lesson in New Orleans-style head-wrapping from my mom’s friend Dianne, and a history lesson too! Now when I make a big scarf or a long swath of fabric into a tignon, instead of wearing a boring old bandanna or beanie, I will know I am “quoting” the clever, rebellious free women of color of 18th-century New Orleans.
Dianne (with real tignon) and me with tignon-like scarf
Thanks, Dianne! (Here is one thing Dianne does…historic tours!)
Finally, a brief report on our emergency family adventure trip to the bottom of the Grand Canyon. We were gone for 6 days. We spent Saturday night on the rim of the Canyon, descended (2 by mule, 2 by hiking) on Sunday, spent two nights at Phantom Ranch in Bright Angel Canyon at the bottom, and came back up on Tuesday. We spent a luxurious second night on the rim and half of Wednesday in the park before we finally drove off for a brief but fun family visit in Prescott on our way to Phoenix (and our Thursday AM plane home).
It was all really, really fun and a thorough getaway in feel. The canyon is beautiful, of course, and even more astonishingly so when you are IN it rather than just looking into it. We all had fun, and it was interesting to be together and apart in different family configurations throughout the four middle days of the trip.
Because it was a way to get housing at Phantom Ranch, Will (15) and I signed on for the mule trip down and up; Eric and Jesse hiked. Jesse (12) was a great hiker…7.5 miles down on Sunday and 10 miles up on Tuesday. Will and I enjoyed our mules and the feeling of riding on a sure-footed animal on narrow precipitous trails. The mule-train guides were friendly and we saw a lot on the way down and back (but no longhorn sheep).
I think I could have hiked, because my radiation fatigue went away on Saturday! but I suspect the hike out of the canyon would have pretty much worn me out. On Wednesday Eric, Will, and I went down the Bright Angel trail 1.25 miles in search of petroglyphs, and then up again of course…so I got a little vertical hiking in. (I hiked down and up in 1993 too.)
Will in Phantom Canyon
Will & me on the mule ride up (on BB and Charlotte the mules)
Family photo on the South Rim
Jesse (L) hiking up the Bright Angel trail
Jesse & Eric at the top of the Bright Angel Trail (10 miles of up)On the rimThe south rim in the evening
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.
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. 🙂
