This book came out of a qualitative research project/dissertation by a psychologist who got interested in cancer patients with unexpectedly good outcomes–either remissions or many more years of survival than expected. She interviewed lots of people about what they did to enable their “radical remissions”–and despite these sometimes being called “spontaneous remissions,” they don’t seem to be very spontaneous. The people with cancer made a lot of changes to get to their remissions, and she found similarities among them, culminating in nine specific areas of change that a preponderance of her interviewees worked on.
Eric read it too. For each of the 9 strategies, there is a detailed anecdote about one person form whom that strategy was the most important change. This is a a very patient-centered book; the interviewees are at the center of the narrative, because it’s about what they did. She also interviewed alternative & integrative healers around the world who claimed to have helped patients have “radical remissions.”
It’s very easy to read, though a bit frustrating for those of us who want references for everything. Reading it after or paired with Anti-Cancer would be a good strategy if you are one of those.
So one thing most everybody did was radically change their diet to eliminate or almost-eliminate meat, dairy, refined grains, and refined sugar. Hmmm.
More soon on my informative trip to the Block Center in Illnois.
I’ve finished my ninth round of chemo now and it continues to be quite bearable. Maybe the IV Vitamin C and the acupuncture I get every week a day or two after the chemo are doing some good! The anti-osteoporosis shot I get every month laid me a bit low for a few days last week, but in general I’ve been feeling pretty normal, and life has been what I would call normal-ish. When I’m not feeling so hot I find it hard to work or do schoolwork, because I don’t feel like thinking. So I do a lot of reading and sitting around in bed watching Netflix and wondering when I will ever be motivated enough to “get back to work.” And then I am, so I do. Eric and I have been talking about the purpose of this cycle for me.
In a few weeks I’m going to have a consultation at the Block Center for Integrative Cancer Treatment in Skokie, Illinois (next to Chicago). Should be interesting to find out how they would treat me, and if there are pieces I can adopt here (or if there is any way I could get treatment there without having to move). They integrate chemotherapy, nutrition, supplementation, massage, psychotherapy, exercise, and mind-body strategies all in one place and set of care providers.
Hopping without smooth transition from topic to topic, here’s a quote I found on the blog of a mother with metastatic breast cancer, Lisa Bonchek Adams, writing about her three young and early-teen children:
“I just wish I could be there for them to outgrow
by choice,
by time,
by age.”
(Ouch.)
Eric has read, and I will read soon, the book Radical Remission by Kelly Turner, Ph.D. It’s an investigation into the cancer patients who get well or live much longer than expected–what did they do, and are there commonalities we can learn from? Perhaps more on that later. For now, time to go see how the kids are doing packing for 3 weeks away at camp!
…at least not about my health. Or rather my Health. Friday before last was one of those days when I had to admit my life is a little bit more complicated than most. It was time for another brain MRI and CT scan (chestabdomenpelvis, as the CT techs say it). The schedule for these is every 12 weeks–that is, every 4 chemo cycles. The March ones showed the tumors shrinking a bit, which in the brain was an expected result of January’s stereotactic radiosurgery, and in the sternum and lung was less expected and quite positive, because even just no more growth would be quite good enough.
The June scans were not as clear-cut as in March. The sternum met might be a millimeter or so bigger, and is “more dense,” whatever that means–my oncologist didn’t know whether that was good or bad. The one in my lung is unchanged. Most of the brain lesions have shrunk away, one is notably smaller than in March, but the biggest one did not shrink and in fact it might be showing more swelling around it, and more activity, than in March. Again by a couple millimeters. The best part of both reports was that they did not show anything new. So overall, they were pretty good. But with some ambiguous bits. The take-home summary was: “good, with two small question marks.”
The brain question mark got us an appointment this week with the neurosurgeon, and the suggestion (from the oncologist) of a follow-up brain MRI in 4 weeks.
Meeting with the neurosurgeon was reassuring overall (though I still can’t shake the image of him as the fast-talking smart jock on the high-school schoolbus). He said he “wasn’t very impressed” by the comparison March-June (this is good) and he would be fine with following up on the original 12-week schedule, or 8 weeks, but certainly not less than that since these things are slow and another ambiguous result would be not worth the hassle. The changes could be just post-radiation reaction. The bigger the original lesion the less likely it is to go away and the more likely it is to just stay the same size overall.
So we got to see some cool MRI images of my brain–thank you, anatomy & physiology classes!–and I’ll have my next brain MRI in early August. Meanwhile we just wait, watch out for symptoms (which I don’t have at all), and wonder whether anything bad is going on. As Augustus says in The Fault in Our Stars, “Apparently, the world is not a wish-granting factory.”
Meanwhile chemo continues to be quite bearable, I’m getting IV Vitamin C, the boys are out of school, the fireflies are amazing at night in the field below our house, and I’m eating ice cream way too often.
Three weeks between updates seems a little much. However, there is not much new to say–things are going along pretty well, with no spice-rack installation under the bathroom sink as yet. I am in the second week of round 7 of chemo. The afternoon of chemo and the day after, I am tired and feel quite run-down, and I have some gut cramping and indigestion on and off during the 3-week cycle, but it is overall quite tolerable on the lowered dose. I have more hair than before but I can’t tell whether it is just longer, or a greater number of hairs. Maybe 10% of my hairs could survive the starting dose of eribulin, and a 15% can survive the reduced dose? Who knows. Eric says the spots that were bald after brain radiation are coming in darker (my original color) though the rest is much more gray than before.
In any case, it’s gotten mostly too hot to wear anything on my head, so I mostly don’t. When we go out in public, I call it “making the world safe for chemotherapy victims.”
I started getting IV vitamin C every week or so a couple weeks ago. I’m also having acupuncture every week. Honestly I am not seeing dramatic results from either one, but will stick with them for a while.
The summer semester started last week and so I am turning my attention to working on my independent-study project (actually doing the data analysis I planned and researched in my previous two Critical Inquiry classes on research). There are nine new lambs on the land and they are often viewable right out my bedroom window (or back door) because they are pastured just west of our house. Everything is spring green. (except the lambs)
That’s today. If there is a midwife in your life, now’s your chance to appreciate her!
On to less important topics.
I got some eyebrow-makeup advice from an unexpected source recently…yay! Will have to act on that soon now that I am not so mystified.
I now have, below my right collarbone, a port, which once the incisions heal will only be minimally annoying every single day, I hope (while proving very useful for chemo and IV Vitamin C administration). A port is a small reservoir under the skin that is connected to a tube that feeds into a vein. Medications are injected through the skin (as with an IV), into the port and from there into the bloodstream. There’s nothing outside the body (just a lump under the skin). Seatbelts and ports do not like each other. And it makes one pause before putting on a scoop-neck shirt.
The barn swallows are back in our neighborhood, nesting in our eaves as usual. They are super fun. No ewes have had lambs yet, but any week now.
And the semester (of midwifery grad school) is over. All my grad-school friends are on-campus this week learning “birth skills”…I wish I were there. They better ask lots of questions since I am not there to do so!
I had a nice week “off” of chemo. I didn’t do much in the world of the sick–just made a few appointments and went for one blood draw, and didn’t end up doing any cancer research. I have felt pretty good this whole cycle (the first with the reduced dose of chemo); no queasiness after the first evening, good appetite, more energy than the last few months. I finished a big written project for my Philadelphia University class, putting in a lot more time on it in the couple days before it was due than I thought I would, but it was kind of fun. Geeky fun. I have been managing two walks a day, plus various supplements, drinking green tea and more water, etc. (I made myself a daily chart to help keep track). I did a little teaching about labor and birth for a small group of teenagers last week, which was really fun, though I felt out of practice.
This afternoon I start my 6th cycle of chemo. Meanwhile many people at QIVC (my intentional community) have a stomach bug, including my 15-year-old. It seems like a 24-hour one, though. Cross your fingers. My WBC counts are still in the normal range so I am not any more worried than I would usually be when QIVCers are dropping like flies…
Thursday morning I get a port “installed” (can’t find a better word) below my clavicle. This will allow chemo to be delivered without putting an IV in my arm (that’s getting harder as my arm veins get scarred up by the chemo). I am seriously hoping it will not be as annoying and irritating as my 2006 port, which stuck out way more than some do, and physically bothered me all the time. (The woman from Interventional Radiology*, the dept. at Albany Med that is putting in the port, assured me that since 2006 ports have gotten smaller, and at AMC they actually use pediatric-sized ports for many adults anyway.)
Next week I start another try at weekly acupuncture, with the integrative practice, where the acupuncturists are experienced with cancer/chemo. (Last time, 2006, it was with a general Chinese Traditional Medicine practitioner and I didn’t think it did much for me.) Though I had so few side effects this last cycle that maybe it’s not necessary–as I understand it, acupuncture is for side effects. And I’m working my way towards starting IV Vitamin C as well, which is supposed to do two things–decrease side effects (thus theoretically enabling higher doses of medication) and potentiate the chemotherapy.
*a medical sub-specialty of radiology which utilizes minimally-invasive image-guided procedures to diagnose and treat diseases (thanks, Wikipedia)
But what is really important? Hair.
I have ended up with a smattering of hairs still hangin’ in on my head, and growing. This sounds good but actually looked really awful and depressing. So last week Eric buzzed my head. Now that the weather is getting warmer, it is more comfortable to go hat/scarf/wrap-less a bit. We decided to create a new hair look: chemo punk. Here is a picture. (Which I have now spent 8 minutes trying to center..forget it)
Punky fluff of hair in the bangs area provides small illusion of hair when head is covered
I think the few hairs left may eventually go, or I may get tired of the silly look before that, but for now it’s the fun I can find to have with it.
Really not sure what to do about the thinning eyebrows, though. No makeup skills.
