July 25, 2011 |
| Jean & Matt's Blog |
Dear Family & Friends,
Please check our blog from time to time. We will try to keep it up to date.
Love,
Jean & Matt
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July 24, 2011 |
| My First MRI |
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One of our mystery roses (yellow with red hips) with our house lookimg in the background, See Matt Comment entry for more information
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It's been weeks since I wrote anything to post, mainly because of fatigue. I was tired immediately after surgery, when I couldn't sleep more than a few minutes at a time. After a few weeks I was still only sleeping a few hours a night. They say fatigue slams most people about three weeks into radiation treatment, and in fact my energy level, already low, fell sharply at the beginning of June. My doctor gave me sleeping pills; I only had to take a couple before I got back on track more or less, and my mood and energy level both improved dramatically. My doctors and the radiation technicians also say that most people start feeling better again even before radiation treatment ends, and they were right about that too: I just have one more week to go, and have enough energy to do this post. Over the next few days I hope to share more observations and photos, and acknowledge the wonderful things that our friends have been doing for us, including working in our garden and cooking us meals, taking me out to visit other gardens, sending me gifts, and writing me encouraging notes.
The biggest news is the MRI I had on June 15. The purpose was to compare the scan with the one they took when Dr. Sneed (my radiation oncologist) drew up my treatment plan, so she could make sure she didn't need to change the size of the radiated area, length of treatment, intensity of the radiation, etc. As it turned out she didn't, but Matt felt a lot of "scanxiety" leading up to learning those results (see Matt's post "The Waiting Game," http://jeanscare.myevent.com/3/miscellaneous2.htm, if you're curious about the scanxiety details). I've been working at drifting along as if in a bubble, trying not worry, to eliminate the stress response and help my body heal.
Even thought the treatment plan isn't changing, Dr. Sneed couldn't tell whether the MRI results were good. The scan showed two small areas of "nodular enhancement," on either side of the resection cavity, which were probably just "pseudo-progression" (flares sent out by the tumor before it disappeared). But maybe it was an actual progression, Dr. Sneed couldn't tell for sure.
When she told us this and then turned to me and asked me how I felt, as the best gauge of my health, at first I felt scared. For a day or two I felt a bit jumpy each time I got slightly off balance or experienced a tiny, fleeting (split-second) headache (the only kind I have, and which are probably due to one of my medications). But at the end of last week I started to feel quite good, had more energy, my thinking was clearer, and my editing skills don't seem to be impaired (I found a marvelous typo in a literary journal, "Dairy of a Madman"). So I've decided to interpret the MRI as showing a positive change.
I'll have another MRI on July 13, this one is for the neurooncologist. It's likely to also be inconclusive; probably I won't have one that truly shows what's going on inside my head until September. That jumpy feeling may become a part of life. Last week Matt and I drove down to South Shore to run along the beach at sunset. When we got back in the car it was dark, and I noticed that each streetlight and car light showed up as a broad smear in an arc reaching across most of the windshield. I got really worried about my vision, until Matt told me that he saw the same thing: the problem was just that the windshield was dirty.
Matt has vowed to be better at cleaning windshields and other household chores. I continue to work at staying calm, and enjoy each day as it comes. I'll keep you posted.
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May 24, 2011 |
| Start of My Radiation & Chemo |
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Mission Point - Lake Michigan
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Well, I started radiation and chemo last week. On Monday, May 16, I went to the radiation oncology department. They made a mask to fit my face out of what felt like a soggy sponge that hardened into a plasticky material. The nose has a point sticking straight out. The mask will hold my head in exactly the same place each time they give me radiation. I’m very happy to have started treatment, especially after learning that my tumor grew quickly between my first seizure on April 6 and my surgery April 28.
As Anne has always described it, radiation is not something that one feels, though in a few weeks I expect to experience fatigue. I’m very lucky that the tumor was in a part of my brain that is called “silent,” which means no critical activities take place there. So unlike my sister, I can get regular external beam radiation (she had to go to Boston to get proton beam radiation, which can be directed more precisely). I’m going to UCSF for mine. Each session takes about 15 minutes—and it’s actually rather relaxing. They put a wedge under my knees and cover me with a warm blanket. The machine that produces the radiation makes a noise that is vaguely reminiscent of Loreena McKennitt’s Prologue, one of my favorite pieces of music. (http://www.youtube.com/watch?v=CxH7FlFfqEw) On the ceiling above the machine are images of blue sky with flowers. Before I got the first dose of radiation on Thursday, my radiation oncologist took some extra time to test their plan to make sure that the radiation will go exactly to the place she intends. That evening, after we got back from UCSF, I cooked a little dinner. I'm drawn towards vegetables now, and made some acorn squash with a mess of cooking greens along with purple onion, ginger, garlic, crimini mushrooms, and sesame oil. It was tasty. An hour after dinner I took zofran, an antinausea drug, and an hour after that I took my chemo, temodar. I like the idea of these magic chemicals that will weed out the aggressive tumor cells. I’d like to keep all of these drugs in a beautiful box that I have for that purpose. But the truth is, the volume of medications is too large to fit in the box—it fills a large cloth grocery bag.
In a few weeks the hair that is in the path of the radiation will start to fall out, but the rest will remain: unlike many types of chemotherapy, temodar does not itself cause hair loss.
Before dinner on Friday, I picked up a Himalayan salt lamp at the Alameda Marketplace. It has a hollowed out place for a light bulb and is supposed to help neutralize electromagnetic fields. Since I spend a lot of time on the computer I thought I'd better hedge my bets. It is attractively rustic and glows a warm ochre-peach color.
One puzzling thing about this part of the treatment is that apparently I’m now supposed to have a bunch of free radicals circulating in my brain—the radiation creates them, and they are supposed to kill the cancer cells. I’m not sure how to reconcile that with the traditional advice to take lots of antioxidants; I need to hold back for now, and step up the green tea afterwards, I guess. I’m anxious to see the UCSF nutritionist to sort this out.
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May 20, 2011 |
| Zombie Hair |
My hair looks more or less the same as before, but with some patches that were shaved for the fiducial markers they glue on people’s heads to line up with their MRI scans during surgery. A few odd places were also shaved for no apparent reason. The color is fading to a lighter and lighter red as the henna washes out. I want to put more henna on but want to let my poor scalp heal first. The hair on the right side of my head turned white a year or two ago almost in a bullseye pattern above the place where the tumor was found. The hair that will be irradiated—most of the right side of my head—will fall out, most likely starting in a few weeks, and will take a few months to grow back. It will probably grow back curly, at least at first. The chemo I’m taking will not make my hair fall out.
My sister brought me her cranial prosthesis (read: wig), which looks quite good on me—I tried it on last summer when it was her wig, while I was visiting her to help out with our mother. Mom had broken her pelvis not long before Anne learned that her tumor had come back, so I’d gone to Bethesda for Anne’s surgery, then back to Florida to move mom home from the rehabilitation facility. At that time, when I didn’t have a good haircut, Anne’s wig looked better on me than my own hair. When she brought it to me last month, I was surprised how comforted I felt when I popped that wig on my head and saw how good it looks. Knowing that I can make my hair look normal any time is a bigger deal than I thought it would be.
For quite a while after surgery I was afraid to think about what had been done to my scalp, but eventually I got curious about what they did to my hair while I was unconscious. Then I found that I had the most amazing zombie hairdo. This discovery is significant because I learned the dance Thriller and dress up like a zombie on occasion. My part was stapled together all the way up the middle and wrapped around to just above my right ear. I can hide the staples by combing hair over my part. I really like the look of the staples glinting through; a tough look that I never was brave enough to aim for when I was in my 20s trying to be punk. At that time the toughest look I achieved was a small lock of bleached hair that I couldn't bring myself to dye purple. In the photo you can just make out the shine of the black staples through the red hair combed across the part.
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May 14, 2011 |
| Attitude |
May 12, 2011
My attitude is everything. I love it when people send me positive energy. Whatever you do, please don’t fret about my pathology report. I myself am not going to pay any attention to the statistics having to do with glioblastomas; instead, I plan to change the terrain of my body to make it inhospitable to cancer, à la the discussion in the book Anticancer by Daniel Servan-Schreiber, a doctor who wrote a book about his brain tumor after it returned. To do this, I’m preparing to obsess about my diet, exercise, and all manner of other activities—yoga, meditation, guided imagery, and anything else that might help.
books.google.com/ebooks
Earlier this year, I was lucky enough to read the book the Holographic Universe by Michael Talbot. At first I thought it was a book about quantum mechanics, having come across it on a large shelf of books I’d selected from my friend Sandra’s collection; I’d come to expect her books to be intense and depressing like House of Sand and Fog or A Fine Balance. But this book, which is neither depressing nor about physics, has a lot to say about energy, alternative healing techniques, and possible explanations for a wide variety of unexplained phenomena. I found myself convinced that much more is possible than I have ever been prepared to believe. The timing of this mind-opening experience is very fortunate for me, especially as it appears that the mind has a great deal of control over the body and can have a profound effect on healing.
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May 13, 2011 |
| The Shed Story |
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Photo Caption
left to right bottom row: The Freschls: Karl, Charlie, and Guille
left to right 2nd row: The Weises, Sherry and Ira
left to right 3rd row: Dan Hakim & Pamela Michaud
left to right top row: Jean Lewis and Ted Hayes
Marv Fischer, who played a key role in roofing the shet, arrived after the photo was taken.
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Story
May 6 to 7, 2011
The Weekend of the Shed
Saturday morning May 6, a gang of friends converged upon us in response to Matt’s pleas to erect a small shed I’d purchased more than three years ago for our gardening tools/earthquake supplies. We were lucky that Ira and Sherry Weise agreed to oversee the project and solve all manners of problems resulting from haphazard planning. One shift assembled the shed and bolted it to a plywood foundation, a second worked into the evening putting shingles on the roof. Our neighbors were putting up a chicken coop simultaneously a few feet away -- it felt like a neighborhood day for small construction projects.
By Saturday night, a 5 x 7 x 8 barn red shed stood high and imposing over the dramatically changed terrain. Where all had been weedy mess, there's now a flat, clean surface ready for planting. I thought I’d feel the need to paint it a neutral color as quickly as possible, but it looks surprisingly perky and appropriate out there, and we are keeping the red.
My original inspiration to get the shed was born of fear while watching the aftermath of the 2008 Honshu earthquake in Michigan. I decided that I just had to have a specific place to keep our emergency earthquake supplies, instead of stashing them willy-nilly in the garage -- once we had to pay someone to open the garage door for us after the contents shifted. The shed I found on craigslist early in 2009 simply screwed together, and the price was right. I told myself that when I got close the final assembly would be simple.
But the problem with that shed, and what kept me up the first night I owned it, was that it did not come with a floor, and I know nothing about construction. I didn't have a good grasp of what size foundation to build or how to assemble the shed on top of it. I was pretty sure some major troubleshooting would be required to get the thing up.
That prospect was intimidating. Time went by. We've been working on catastrophic earthquake planning documents at work for a couple of years; each time I read another one, I dreamed of getting that shed built and stocked. In theoretical terms, the shed also has served as a starting point for planning the huge reorganization of all my stuff that I've always known would come, some day. And then my sister Anne came from Florida to help out after my brain tumor operation.
Anne was a dynamo of practical energy who could not be gainsaid, and she'd set her sights on cleaning and organizing the entire house. When she saw the shed lying in pieces on our backyard, she didn't want to focus on earthquake preparedness or long-range plans. She had one question for Matt: When will it go up? I could see Matt start to give the "it's complicated, some day" response that we'd honed over the years, but something about Anne's demeanor stopped him. Instead he said "This weekend, I'll see if I can get some help." The rest is history.
Anne and I had our own list of things to accomplish on shed day, and it was ambitious. During the morning, Anne assigned me a set of boxes to sort through in the garage, then in the afternoon we went back to Sears to get a table and set of chairs for the deck. We normally keep so much stuff in the house that the dining room table is covered most of the time, and the beautiful outdoor furniture provides another whole functional room. Plus the chairs are very comfortable. I had a little rusted metal candle lantern covered in a maple leaf pattern; Anne spray painted it black and it now adorns our outdoor table.
Now that the shed is up, we have already sorted through much of the stuff in the garage, paring down and making some room for necessities, such as our new drier. While we were at Sears getting the table and chairs, Anne and I also picked out a washer and drier to replace the experimental washer/drier combo machine we had that broke years ago.
Washer/drier combos had seemed like a good idea, very green, using hardly any energy, water, or soap. And the small size allowed us to install a half bath in the laundry room. Although they were a bit pricey, we figured we were helping the cause of efficiency by paying the high prices for the early machines. But the first combo didn't work out, dying after only a couple of years. The second one was even worse, and we’d been getting by doing our laundry at Matt’s mom’s house, with the help of his sister Gale. But now that I'm facing chemo and radiation, we need to be able to do our own laundry whenever we want. So we're back to the old school, with a separate washer and drier. The washing machine is in the laundry room, where the combo used to be, and the drier is in garage, using the space that the shed helped open up.
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May 6, 2011 |
| The Pathology Report |
May 5, 2011
Tonight the doctor called around 8:15 p.m. to tell me about the pathology report, which, as I expected, was not good. The tumor is a glioblastoma, a grade-IV astrocytoma. Also as expected, I’ll need 6 weeks of radiation together with chemo, starting in a week or two, followed by 6 months of chemo. Assuming I can arrange for transportation every day, I’m going to get the radiation treatment at UCSF. The chemo will be temodar.
My sister just finished going through the same treatment—based on that, my main challenges will be fatigue, depression, and some other common chemo side effects. The medical oncologist I spoke with last week assured me that the nutritionists at UCSF will be able to help me a lot. I hope that’s true—and I’m prepared to make major lifestyle changes. Seems very likely that I’ll lose some of my hair temporarily from the radiation, and that it will grow back curly.
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May 5, 2011 |
| Recovering at Home after a Craniotomy |
Greetings All,
Before April 6, I thought I had Attention Deficit Disorder—a relatively new diagnosis that made sense of my lifelong tendency to procrastinate, and need for deadlines. I'd been avidly searching for an effective treatment for several months and was still hopeful that it was just around the corner.
Then I was suddenly standing in front of the cashier at a gas station, trying to ask a question, I found myself having what seemed to be just a little problem: I couldn't talk. I stood there frozen for about a minute and went back to the car, relieved that I was able to say “shit” to myself on the way. After driving myself to the doctor's office (having called first), and then to the ER, I learned I had what they first called a mass, then a lesion, then a brain tumor, and that I was experiencing “focal seizures,” which are small and undramatic as far as seizures go. Alameda Hospital transferred me to Eden Medical Center in Castro Valley. During the five days I spent there, getting scans and talking to doctors, I felt as if I were undercover taking notes on being a neurology intensive unit patient, my symptoms were so minimal, and I was in no pain.
The weirdest part of this is that I already know more than the average person about brain tumors—my younger sister, Anne, had one in 2002, and hers has come back twice. And she's a radiation oncologist who treated many brain cancers after her own diagnosis, and who now knows especially a lot about brain cancer.
From earlier postings I think it's clear that after I was discharged from Eden, I waited a week to see the head of neurosurgery at UCSF, Dr. Berger, one of the top neurosurgeons anywhere, and an especially kind man. And that last Thursday Dr. Berger removed my tumor. It was very hard to wait that week to see Dr. Berger, but when he looked over my case, he fit me into his surgery schedule immediately. Checking into UCSF and meeting with all of the doctors, I've rarely felt so interesting—as a new potential new high-grade glioma patient, I was just what many researchers were looking for (and although we'd hoped that the lesion would turn out to be low grade-- we had a particular hope that it would be a rose prickle abscess—it does appear to be a high-grade tumor). I'll post more on that later, after we get the pathology report today or Friday). As Matt mentioned, I am in at least four research studies, and eager for more, especially the epidemiological ones. I have some urgent questions: Could this be related to the PBBs Southern Michiganders were exposed to in 1973? Isn't it odd that both my sister and I have brain tumors and that our parents both had Parkinson's disease? What the hell is going on?
Now I can see that the part in my hair is held together by staples, and I don't like to explore what else has been done to my scalp. Sometimes the staples make popping noises, which takes some energy to ignore. Anne is staying with us for a few days to help me recover. Anne is an angel and a true healer, helping me in every imaginable way. It's very strange and wonderful for us that we now know what it's like, from both sides, to have a sister with a brain tumor.
Friends, I'm pretty sure the next information we'll post about the stage of my tumor is going to be scary, but I'm extremely lucky in several huge respects: (1) the tumor was very small when it was found, (2) it's in a “silent” area, which eliminates a lot of trouble about avoiding important brain functions as they treat it, (3) I got into a top-notch hospital, (4) it's almost as if I'd been planning for this already—I'd already been trying to fight this on my sister's behalf, so I'm in the right frame of mind. For example, I already had a bunch of anti-cancer books,the movie CrazySexyCancer (which I wholeheartedly recommend), and had started to make some small life-style changes (5) I have you, my wonderful friends and family. I did not fully understand the meaning of energy before, but I've gotten a positive rush of energy from all of you, and it matters. I just wish I'd known how to help others this way earlier.
Love,
Jean
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April 27, 2011 |
| Preparing for Surgery |
Well, I'm trying to finish editing this blog before it goes public, and am drinking as much water as I can before midnight. I'll be listening to some Pema Chodron meditation CDs later on--I love her!!! I expect to really learn something too; nothing motivates me like being pushed to the wall by something like this and I expect my ears will be wide open. So many friends have sent me wonderful texts, emails and calls; I'm truly grateful to everyone for the flood of positive energy coming my way. It really helps!
I love you all; Matt will keep you posted tomorrow as news comes in.
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April 26, 2011 |
| Getting Ready for the Surgery |
Dear Friends and Family,
You may have seen all or part of this already in Facebook or email. If so, apologies for the repetition. If not, Jean's having surgery for her brain lesion tomorrow, here's the full story.
Dr. Berger, the 2nd opinion neurosurgeon we consulted at UCSF Monday, thought the lesion needed to come out ASAP, and put Jean on the schedule for tomorrow morning. They won't know for sure what it is until it's removed and they do a biopsy. Jean will be in the hospital for 2 -3 days, then recovering at home for 2 - 3 weeks. According to Dr. Berger, she'll be able to get by with pain pills (no injections needed) by the time she leaves the hospital. After she recovers, they'll start the chemo or radiation, if that's indicated by the pathology report,
BTW, Dr. Berger seemed like a very kind man, in addition to being a distinguished neurosurgeon. After answering our questions (we brought a list), he told Jean he was sorry she had to be going through all this. Simple words, but he said it with warmth and sincerity, and it made an impression. And when we got on the surgery schedule -- which didn't take long, but he had to reschedule some appointments -- UCSF immediately assigned a nurse and a medical coordinator to guide us through all the pre-op procedures. We had gone in fearing that we might encounter piles of forms to fill out, and frustrating delays, but the reality is completely the opposite.
Jean had an MRI to prepare today to prepare for the brain surgery tomorrow. The one they used at UCSF was donut-shaped, with the patient lying down on a platform that's inserted into the center. The imaging consisted of several sequences, which altogether lasted over an hour. Each sequence was accompanied by different sound effects that one of Jean's friends, who's had breast cancer, once characterized as being like alien music. Most of the sequences will be used to guide the surgeon's hand tomorrow, and the fiducial markers (you see them on Jean's forehead in the attached photo; they won't be removed until the surgery is over) will help line up the MRI images with Jean's brain tissue. One of the sequences is just for research. UCSF is is a teaching hospital, and they asked Jean if they could throw in an extra sequence for the good of science. She usually says yes to questions like this; so far she's involved in 4 studies.
Another study is on cognition and high-grade gliomas. It's one we certainly hope Jean doesn't qualify for, but she may. Over the last few days Jean has experienced some cognitive difficulties, and speculated that they were due to swelling around the tumor. Jean tested herself by seeing how many digits of Pi she still has memorized; when she was junior high she knew over 300. Even though it's been years since she's tried, she found was able to recite the first 40 of those famous digits. How many do you know? Not exactly convincing evidence of cognitive impairment.
Another tale of cognitive science. We had to fill a prescription from the in-hospital pharmacy, and set out to find said pharmacy using a sheet of instructions that has one go down to the basement of the hospital, turn right when leaving the elevators, then turn right again at the first corridor. But the problem for me, coming out of the elevator and trying to navigate from the instruction sheet, was that it looked like we'd wandered into a junk yard of scrap medical equipment. The corridor was lined with what looked like used gurneys, etc., and looking down it, I couldn't see any openings on the right that might lead to the pharmacy. I faltered looking back and forth between the instruction sheet and the medical clutter, thinking that this situation was yet another vindication of my decision early on to switch from hardware to software. But Jean had no patience for such confusion. Taking the paper from my hand, she walked briskly to the right, turned at opening I hadn't seen, and walked straight window-in-the-wall where they were dispensing prescriptions. Then while she was filling her prescription, Jean, ever the editor, noted a typo in the pharmacy sign: it asked patients to push the "bottom" instead of the "button." No evidence of cognitive impairment there either, at least on her part.
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2011
Jean & Ma...
May (6)