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The Waiting Game
June 15, 2011 Jean is having thirty radiation treatment sessions, one every workday for six weeks. Tomorrow marks the end of week four, and today she'll have another MRI to check for tumor activity. It's not a slam dunk, sometimes tumors grow even during radiation, but the stress is manageable.
Four weeks is long enough to settle into an almost comfortable routine, and at times the prospect of ominous test results seems abstract; and when it feels less abstract, anti-anxiety medication helps. We can also turn to Jean's sister Anne, radiation oncologist and brain tumor survivor, for expert advice and reassurance. And we have an objective reason for being optimistic: Jean recently gave a convincing demonstration that her editing abilities are unimpaired. Cognitive problems are a major brain tumor symptom, as coughs or breathing problems would be for lung cancer.
Our routine centers on the radiation treatments at University of California at San Francisco (UCSF). They're scheduled for 2:30 pm, usually begin on time, and last about fifteen minutes. During one of her first visits, Jean told the radiation technician about an exciting discovery she'd made the day before: one of our roses, a Walsh Rambler from 1901 named Sweetheart, may be the last living plant of that rose.
Sweetheart had been declared extinct by Modern Roses 12, the authority on such topics, but in 2005 a rambler enthusiast from the east coast unearthed it somewhere and brought several small plants to the Heritage Rose Foundation’s Conference in El Cerrito. Jean was one of several people there who purchased Sweetheart, and she'd just learned that she was the the only one whose plant survived.
That survival is itself a small miracle, given the periodic rose disasters that struck during hot weather over the past couple years when Jean was in Michigan or Florida helping her family. But her Sweetheart managed to grow through the pot into the ground, and tapped into our high water table. Now it's flourishing, with many large canes laden with flowers.
So, when the radiation technicians, alerted to her interests, asked about her roses, Jean brought them a bouquet so they could see what old roses are like, and so she could show off Sweetheart. They were delighted to get it, and seem genuinely fond of Jean. That's another reason to be optimistic about Wednesday: personality changes are another major brain tumor symptom, but Jean makes friends as easily as ever.
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The Alameda-UCSF commute takes a little over a half hour each way. The driver is me, although we'd heard that the American Cancer Society (ACS) provides rides for cancer patients. But that particular program doesn't exist in the Bay Area, and due to the miracle of telecommuting, plus an accommodating manager, I can take Jean to treatment and still work full time.
We've learned to use the commute time. Sometimes I have conference calls, sometimes Jean makes phone calls to take care of medical paperwork, sometimes she listens to meditation tapes. But mostly we discuss the scenery, as if we were on a camping trip, or tourists in a new city. If the ACS were to offer us rides now, I believe we'd turn them down. It's only two more weeks, and anyway, we're having fun together.
One topic that comes up frequently is the billboards, which you get to know well when you drive by them every day. Two in particular pique our interest, perhaps because their dueling messages are related to the faith vs. fact question that comes up often when you are confronting serious illness.
By the east bound approach to the Bay Bridge, on the left, the American Atheists' Oakland chapter has a billboard denouncing the rapture, which some thought would end life as we know it last May 21; it was called off when the harbinger of eminent doom, an expected cataclysm in the southern hemisphere, failed to materialize. Their billboard states the case concisely. "2,000 years of 'Any day now,' you know that's nonsense!" (atheists.org/Oakland, "Sensible since 1963").
A little farther along, on the right, another billboard implies the rapture has just been pushed back 19 months until December 21, 2012, and invites internauts to go to www.merkaba.org ("We Welcome You to Our Family's Website of Love Energy") and hear The True Jesus sing his Awakening Song to the 144,000. Curiosity got the better of us last week, and Jean browsed merkaba.org from her mobile phone as we drove by and clicked the "Hear the Comforter" button. It wasn't singing, and it wasn't a first person message from Jesus. It was more like a text-to-speech program reading a printout denouncing the false religions established in the name of Christianity, lies that the True Jesus had warned against from the start. We listened to a few sentences, which was enough.
And that may be enough for you too, perhaps wondering at the connection those vaguely interesting billboards may have to faith vs. fact and serious illness. In my armchair philosopher's interpretation, love and energy are important resources when you confront illness, albeit difficult to define and quantify. But so is the calm, audacious spirit that notes the failure of scheduled raptures to materialize, and dares to draw the obvious conclusion -- although doing so may seem cold and uncaring. On the one hand you don't want to live in s fool's paradise of denial, or on the other, to give up without a fight. Being a patient, like being a doctor, like much else in life, is both an art and a science.
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Two weeks into radiation treatment we dropped in on friends, whom I'll call Cathy and Mandy, on our way back from UCSF. They live near the Golden Gate Park panhandle in San Francisco, just a half dozen blocks from the famed corner of Haight and Ashbury. Mandy is an artist and former admin worker at UCSF, retired after being diagnosed with a glioblastoma multiforme (GBM) in December 2008. Cathy is an attorney whom Jean met through her father, Jean's mom's boyfriend at the time of his death in 2007. Cathy and Mandy have been together for 31 years.
Cathy told Jean we could come by one afternoon when she got back from a hearing in the East Bay, while giving her a gentle warning that Mandy's tumor had been in a bad place, that Mandy was having problems with short-term memory. We jumped at the opportunity despite the warning, and met them at sidewalk food court down the stairs and across the street from their flat.
That was a long way for Mandy to come. She moves slowly, walks with a cane, takes extra long to cross the street and to stand up after sitting in a chair. Stairs are a hike. For us it would have been like walking a mile, and we didn't expect all that effort on our behalf.
Mandy did seem to have some short-term memory issues, but they weren't extreme. She did not remember either us from before, but after being reminded a couple of times she got our names. Not really much worse than anybody who's bad at names and faces. Her voice is soft, and she pauses before speaking, as if taking time to sort things out. You'd know something was amiss from her conversation, something that's hard to put your finger on. Not a learning disability, she's bright. And not mental illness either, she's present to the world. It's as if something is very hard for her that's so easy for the rest of us we don't usually have a name for it.
They told us the story of the tumor after we'd made it back across the street and up the stairs to their flat. Mandy had been having escalating problems with co-workers, and Cathy was afraid she was having a nervous breakdown. Then one day Cathy came home and found Mandy lying on the bathroom floor, her arm curled up as she'd had a stroke and lost the use of her hand. Cathy took her to the emergency room, and they found a tumor deep in her parietal lobe. They operated that same week.
Wikipedia teaches us that the parietal lobe is an organizer, an integrator, putting sensory impressions, numbers, and objects into relationship with one another. Mandy's tumor was in a critical area, and the surgeon said that to remove it completely would mean Mandy would never wake up from the surgery. Mandy was also unlucky in chemotherapy: she was allergic to Temodar, the drug of choice for GBM treatment, and had to use Avastin instead (commonly prescribed only for recurrent GBM, it works by preventing the development of blood vessels for the tumor). Two and a half years after surgery, Mandy has an MRI at least every other month to check for tumor activity. If they find something worrisome that changes to every month. Mandy's on the every month schedule now; they didn't tell us what the plan was if worrisome escalates into something more.
By way of comparison, Jean's tumor was also a GBM, but close to the surface of the right frontal lobe. Overall, the right frontal lobe has important functions like problem solving and social behavior, but Jean's tumor was in a "silent" area, so the surgeon could remove it completely. Jean also tolerates temodar well (that drug works by preventing tumor cells from replicating). However, just like Mandy, Jean will never go more than two months without an MRI. Anne, with a slightly less aggressive tumor, can go for three.
Cathy showed us around the flat, taking us into the small studio where Mandy does oil painting. Mandy's work has a dream-like quality, a bit like Chagall, with loosely connected figures seeming to float in a mythic space. She's one of those artists who never feel like they're finished, always wanting to return to a painting and make little changes. That trait bothers Cathy, who doesn't feel the changes Mandy makes now are actually improvements. Cathy tries to hide the pieces she really likes.
We talked about getting together again, and Mandy said we should work it out with Cathy, she's the one who handles their social calendar. And then Mandy said that bothered her sometimes, that she felt it "infantilized" her.
We asked Cathy how she was holding up, whether she was still doing Transcendental Meditation. She smiled broadly and said that she was. She'd told us a little about her practice before. An important part of it is to write fears and other negative thoughts on scraps of paper, then crumple up the paper and throw it away. She told us she did it a lot, that even in at a hearing she might write a note to herself like "I've afraid the judge will think I'm stupid." It seemed excessive at the time, now it was easy to see how the technique could come in handy.
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The day after we saw Cathy and Mandy we had our weekly conference with Jean's radiation oncologist, Dr. Penny Sneed. The weekday of the conferences is up to us, we can request them just by talking to the rad onc receptionist when we're down in the basement of Long hospital for the radiation treatments. We wanted one that day because Jean had trouble sleeping after listening to all the disturbing tumor talk. We'd also been making our own stress, oddly enough about Scrabble. Jean almost always wins easily when we play, and that didn't change the first game after surgery. And then I won two in a row, the first by a half dozen points, the next by several dozen. Was that a sign of a recurrence? Jean thought that idea was nonsense, and Anne was dismissive, but I couldn't put it away. We agreed to bring the issue to Dr. Sneed.
In the room where I waited while Jean had her treatment, there's a stack of advertising brochures offering the clientele the best news they could hope to hear, short of a cure for cancer. "Relieve Financial Stress" is the title, and that's an irresistible lure even for the shrinking number of people like Jean and me, with health care through our jobs, and even retirement plans. This welcome message is from the Asset Funding Corporation (AFC, 800-542-9513). Open the brochure and you find that if you have cancer, AFC may buy your life insurance policy at up to 80% of face value, like those places in poor neighborhoods that offer to loan money against your paycheck at an interest rate of a few percentage points per week.
Those brochures add a new spin on the experience: brain tumors happen in every country, but ours is an American story. A depressing story when it comes to the health care mess, but for us, the insured, it can be a welcome distraction from thinking about even less tractable problems.
Along those lines, Anne told us an interesting anecdote from her radiation oncology practice. She was invited to give a second opinion on a man who had been treated by another radiation oncologist for a nasopharyngeal tumor that had invaded his skull. Following that treatment, they'd found necrosis spots in his brain and decided that the tumor had progressed even further. The man was told he didn't have long to live.
However, when Anne examined the scans from the first treatment, she saw that his tumor was actually stable. The spots in his brain, all within the radiation fields of his treatment, were not evidence that the tumor had spread. Instead, they were areas of damage caused by the prior treatment itself, and the way it was given.
Anne expected the man to be happy when she called to tell him he need not expect to die soon. But she found that from the patient's point of view, her news had a serious drawback. Expected to die, he'd been living with hospice care. Expected to live, he had to drop the hospice care and resume paying for his medications out of pocket. And how in the world was he going to do that?
Something else courtesy of Anne, just a one-liner, came to mind when Jean"s treatment was over and we saw Dr. Sneed. What's the favorite plant of a radiation oncologist? The hedge.
It was a plant Dr. Sneed had cultivated the first time we saw her, to review the post-surgical MRI scans. Drawing our attention to small shapes in the brain image, she said they might just be edema, swelling caused of the trauma of the surgery itself. Or they might be malignant tendrils extending toward the corpus collosum, the bridge between the brain's hemispheres. We'd just have to wait and see, maybe the we'd find out more when we did the next scan two-thirds of the way through treatment.
That upcoming MRI was topic A in this meeting. Dr. Sneed went quietly though the all the possible outcomes, as if to try to make us understand they were just that, possible. There might not be even any equivocal signs of tumor activity. Or those shapes might be the same size or smaller, in which case it would seem the radiation was at least holding its own. Or the shapes might be larger.
But as for Scrabble, Dr. Sneed thought it could be something to watch, but that two off games were not in themselves cause for alarm. Especially when she heard about Jean's insomnia, a condition notorious for shaving points from functional IQ scores. We came away with a prescription for a sleeping pill called Ambien.
Lest you get the wrong impression, we like Dr. Sneed, and feel lucky to have her. Like because she was very kind to Jean, who was in tears at times during this visit. Lucky because Anne told us she's respected in her field as an independent thinker.
One issue that reputation is based on is how wide an area to irradiate around suspected tumor cells. Conventional medical wisdom says two centimeters in all directions. However, Dr. Sneed believes that's excessive for astrocytomas, which are tumors of the white supportive tissue, not of the famous gray matter (neurons). Astrocytomas like to travel along bands of white matter, and since it's best to spare neurons insofar as possible, Dr. Sneed uses a variable radiation pattern, more in the white direction, less in the gray.
Jean's glioblastoma is a type of astrocytoma, so we'll soon have the chance to see how Dr. Sneed's approach plays out in a real life test.
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There are times when the right drug really hits the spot. The Ambien worked. Jean slept through the night as soon as she started taking it; she felt much better, and her Scrabble playing improved. She won the next two games, the first one close but not the second. Radiation fatigue hadn't set in after all, and she did a lot of work in the garden, some writing, and sent email to friends. One of the emails was to the editor of a literary magazine, who wrote back saying that the "complexity and intelligence" of her writing style demonstrated that "NOTHING was wrong" with her brain.
Then when we received the summer edition of that magazine, Jean called me over and pointed to a footnote. There, in small type, was a reference to Gogol's "Dairy of a Madman."
Jean wouldn't want to embarrass anybody, and that footnote was bad news for a literary editor to get. But I felt she should know. We received a gracious response to my email:
"OY! You have no idea how many eyes looked at that page (including
professional proofreaders), and none saw the error until Jean's. Please give her my rueful congratulations." And so I ask you, could a reader who found the typo that eluded the other editors be having cognitive problems? Clearly not, in my opinion. Despite Dr. Sneed's hedges, I started feeling more upbeat about what the next brain scan would show.
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After that literary episode we started seriously thinking about confronting the books in the garage. Anne had filled about a dozen cardboard boxes with our more expendable books when she was here helping out after Jean's surgery. We were prepared to give them to Moe's Books books for prisoners program (www.moesbooks.com), or put them in storage, or something, but we ended up putting them in the garage instead
First we had those unseasonable May rains, and had to shunt the boxes from the driveway into the garage to avoid a soggy mess. Then Hurricane Anne (as we'd dubbed her cleaning persona) returned to Florida, and we had the chance to breathe deeply and drift back toward our packrat ways. And in the back of our minds, I think we both were worried that those books might cause a rift.
All those boxed books were not really going, no way. But which ones would we keep? How would we decide? Who would decide? I should mention that in our marriage, open conflict is a (nearly) forbidden zone. For example, the Scrabble issue felt like an argument, although we didn't use angry words. I'm not bragging, couples who quarrel are likely able to confront problems more quickly than us, and avoid things like garages filled with clutter. I'm just saying it's our style, and after 13 years of marriage it seems like a fixture, we try to work with it.
But none of my fears materialized when we actually opened the garage to see what we could collect for Moe's. We quickly came up with a workable system. We emptied a bookcase just inside the garage, and put empty boxes and paper bags outside on the driveway. The top of our new dryer, close to the bookcase, made a convenient holding area. We took turns, one of us going back into the garage and bringing out books to stack on the dryer, the other examining the books and putting keepers in the bookcase. If both of us passed on a book, it went outside for the prisoners. Most of them did go outside. We might talk about why wanted to keep a book, or donate it, but there were no disputes.
In fact, it was bittersweet fun. There they were, books that had changed our minds, text books we'd ploughed through, mysteries we'd thought of rereading someday, books we thought we should read but never did -- we could see a picture of our lives in those stacks and boxes.
That last category, the unread books, turned out to be surprisingly interesting. In one case, our failed readings ran in parallel: "Women Who Run with the Wolves" by Clarissa Estes for Jean, "Fire in the Belly" by Sam Keen for me. Both of us thinking at some point that the solution was getting tough. Neither one of us worth much in the warrior department, when you come right down to it.
In the end, we filled the trunk and back seat of our Toyota Corolla with books for prisoners. That's a good thing. California is embroiled in lawsuits because conditions in its teeming prisons are so awful. An expensive mess, like the health care system. Maybe our books would open doors for someone who would otherwise be completely trapped in a terrible situation.
Getting rid of those books certainly opened things up for us. Opened up emotionally, because we'd given them a decent goodbye. Opened up physically, because we have ideas for the garage, and beyond. There's a place in our American hearts where long-range home improvement plans keep sprouting.
Once we clear out the clutter, we can install French doors that open out to the backyard. But before that we may need to develop the attic, to get more storage. And before that, we'll need to talk to the Alameda planning department and ask them what they'd recommend in terms of reinforcing the foundation, bearing walls and joists.
That would all take time. We have time. It will be worth it. The best part is that we can work on it together, that we can do it and be very married. Ideas to savor as we drive off with our load of do-gooder boxes, under a shadow that's a bit lighter than it was the week before.
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The Rim and the Cloud
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