Loose Strife

Laura had a pain filled last night and day. She didn’t have the energy to get out of bed. Around dinner time her mother Natalie found her passed out on the floor beside the bed.
It was frightening, but she seems to be unhurt and ok now. We decided to check in to the Baystate Hospital early for Laura’s safety and our peace of mind. Right now she’s getting processed through the ER. It’s an incredibly chaotic place. Neither of us has been in a big city ER.

Laura decided today to have surgery to relieve her spinal fluid pressure. If all goes as expected, she’ll be in the hospital on Friday for a day.
We’ve had busy days meeting with doctors yesterday and today (Tuesday). Meanwhile, Laura and I have the strong impression that her symptoms are worsening significantly from a week ago — as do her doctors. All of her doctors (three oncologists and a neurosurgeon) are all in agreement that her symptoms are due to intracranial pressure, that the symptoms should be addressed quickly, and that the way to do so is via a shunt, which relieves the extra fluid pressure.
Right now Laura is miserable and fatigued. We’ve had some depressing episodes recently and mobility has become a major issue. This afternoon we tried to stop for a bite at a favorite cafe in Northampton, but as she walked passed the back of the car she started to fall and I had to drag her limp back to the car. She was very upset to acknowledge that she can’t go anywhere anymore without a wheelchair.
On top of that, her headaches seem to be more severe, longer, and more frequent. Now vomiting sometimes precedes the headaches and is associated with loss of muscle control in her head and arms — which has twice been a sad mess in the car on the way to an appointment. Her eyesight is deteriorating slightly.
It’s all understandably very upsetting for her. Laura’s frightened that she’s already missed out on the opportunity to do things that she wants to do and hopes that the the surgery will restore some of her former self quickly.
So radiation is stopped for now. We met with a top-notch neurosurgeon this morning at Baystate hospital in Springfield and he will make room for Laura on Friday. The surgery is relatively low risk — not nearly as risky as we initially thought it to be. If the surgery works, then Laura’s symptoms could be immediately relieved. It does nothing to fight the cancer and over time there’s a fair chance that it could stop working, but it seems to be the best option to try right now. Her doctors are all very hopeful and optimistic. After the surgery we can revisit the cancer-fighting options — choosing among them depending on whether surgery is successful in relieving her symptoms.

On Friday morning Laura and I consulted with a new oncologist with expertise in breast cancer. Although I hadn’t provided any advance information, the doctor had already acquired Laura’s full case history. She seems to be a very nice doctor who seems particularly concerned about a patient’s total well-being. She also emphasized the importance she placed in being accessible to patients, said things like she would be “honored” to be Laura’s doctor, seemed very proactive in her plans to consult with Laura’s other doctors and get moving on treatment options, and seemed to do a better job discussing technical details of treatments compared to Laura’s previous primary oncologist. In general, she was on the ball and sympathetic.
I already had a good feeling that she was professionally more concerned about effective doctor-patient relationships because I found an interesting article she had written on good communication regarding terminal illness. (She writes, “As oncologists, we provide the matrix against which decisions regarding life and death are made and through which communication travels. If we do not serve as open conduits, surely the perilous roller-coaster ride that bends and turns with mortality at every twist will be darker and more terrifying.” The whole article is worth reading.)
While I am not angry or bitter with Laura’s previous oncologist (and I’m sure Laura agrees), in the end we think her bedside manner could have been better and she could have been more aggressive dealing with some of Laura’s bad symptoms over the past months. However, it’s very important to realize that an earlier diagnosis of Laura’s spinal fluid metastasis would almost certainly have had no impact on Laura’s prognosis and things could even be worse. There’s no way to know. It’s all “what if” upon “what if”, that’s just not worth wasting negative thoughts thinking about. But if you insist, know that things would very unlikely be any different. And also know that every decision yesterday and tomorrow also could dramatically affect this chaotic disease in unforeseen ways, so we just do the best that we can. Cancer, in general, and leptomeningeal disease, in particular, is just not understood well enough, treatment options are not sufficiently developed or tested, and personal attitudes, values, and considerations play an extremely important role in terminal illness. As the neuro-oncologist told us on Thursday, there are no obvious answers and no bad decisions.
To take a quick tangent, I will say that surely there are some bad decisions and most of those are related to wasting valuable time on quackery. We’ve recently been contacted by several well-meaning individuals — some just passing on information and others urgently demanding — telling us about non-scientific methods for treating cancer. This is a touchy topic for many and I can hardly claim authority on all theories of cancer or treatment. Instead, since we’re not experts, we have made the most prudent decision, which is to put our confidence primarily in the professionals of conventional medical because these individuals are experts, progress in conventional medicine is done in an open, scientific, and skeptical manner, and the practitioners’ basic aim (to expand on Hippocrates slightly) is to do no harm that is not believed by evidence to be offset by greater good for the patient. On the other hand, putting our faith in unscientific foolishness is a waste. (Taking one example, we have been encouraged to consider expensive diet supplements whose “quantum state” is not in “cellular harmony” because of “degraded resonances”.) We are absolutely not discounting the possibility of inexplicable or unconventional cures and we readily recognize the possibility of improved quality of life due to a vast amalgam of unconventional sources ranging from prayer to diet to acupuncture to, well, you name it. But it is a hope resting in practicality and a desire to live fully while one can, not an absolute fear of death, that drives Laura’s decisions.
Laura’s radiation oncologist is one of those who truly holds out sincere hope. This doctor is a wonderful woman who has been unbelievably generous in the short time that we have known her. After seeing the two oncologists at Dana-Farber this week and also talking with Laura’s new oncologist, the radiation oncologist squeezed us in on Friday afternoon to begin whole brain radiation (WBR). One of the issues that had to be decided was the number of weeks of treatment. The cumulative amount of radiation is the same, but since the radiation is administered every day, a longer treatment is a lesser daily dose. Generally Laura wanted the treatment to be finished as soon as possible, so she would be free to do other things. But shorter treatment increases the risk of long term side-effects manifest a year or more afterwards. I have to admit that I was pushing for the shortest (two week) treatment. However, the radiation oncologist urged Laura to choose three weeks, saying with tears in her eyes (not pleading, just deeply emotional) that she wouldn’t be doing the radiation if she didn’t truly believe that a remission was possible. With such hope, the increased long-term risk was not worth a week.
So three-weeks (15 treatments) of radiation began yesterday (Friday). The radiation oncologist opened her office today, Saturday, just for Laura to get two treatments under her belt as soon as possible. However, Friday evening we had a frightening episode.
About three hours after the first radiation treatment just as Laura had finished dinner she experienced the most severely painful and prolonged headache that she has ever had. She felt like her head was going to explode. When it finally subsided, she became nauseated and wretched uncontrollably for a long time, sometimes in a half-conscious state. I was scared and when it seemed to start repeating, I called the radiation oncologist. I expected her to say something like this is a known, possible side effect and tell me to increase her anti-inflammatory steroids or to call again if it persisted. Instead, she wanted Laura to come to the ER for an emergency brain CT scan because she worried it could be hydrocephalus, “water on the brain,” which is a dangerous build up of pressure in the cerebral spinal fluid (CSF). Increased CSF pressure is just what the neuro-oncologist had diagnosed, but so far there had been no visible evidence of it in the previous brain scans — the last just two weeks ago. However, the situation could change rapidly.
The weather was atrocious. In Ashfield there was two or three inches of sleet, rain was extremely heavy, and the roads were uncleared and flooded in numerous places. Thankfully Laura’s parents arrived to stay with us on Thursday, so we left the kids behind and drove to Northampton through an icy mess. As we drove, her radiation oncologist lined up a technician and radiologist to read the results to be ready when we arrived. She even checked on the status of a neurosurgeon, if one was needed. But within about an hour from leaving home the results were in and there was no change from the previous scan. Laura was feeling just fine and back home we drove.
I felt particularly frustrated. Frustrated that I called, frustrated that the doctor urged us to come in, angry with the weather, and even sort of frustrated at the negative result. If her scan had shown swelling, then at least there would have been something that could have been done — namely, a shunt could have been put in. Instead, it remains a mystery why she had this episode and why her symptoms seem to be worsening over the last several days.
Laura slept very well. And there were no mega-headaches today (Saturday). Radiation was uneventful and nothing remarkable happened afterwards. But Laura had repeated troubles all day getting around — getting to and from the car, moving from room to room. What typically happens is that she gets up, starts to move, and after about 30 seconds loses strength, wobbles and trembles, and then has to sit. No loss of consciousness, just lots of sitting on the floor or chair waiting for things to subside and restart. The broken leg makes the mobility problem more complicated. It is hard to believe that I wrote just a few days ago how we were both “briskly walking down the wintery streets of Boston just like everyone else.”

Laura and I met with a neuro-oncologist at Dana-Farber today. The main outcome was that he more specifically diagnosed Laura’s headaches as due to intracranial pressure. He said that the spinal fluid pressure changes periodically, so Laura’s periodic headaches fit well with that diagnosis. He also observed something called papilledema, or swelling around the optic disc, which is a classic sign of intracranial pressure and also in agreement with transient visual spider web-like patterns that Laura sees.
Intracranial pressure doesn’t well explain why Laura is losing leg and arm muscle control, falling, and blacking out. But, the doctor said that it has been observed sometimes with intracranial pressure.
The doctor doesn’t believe that Laura is having seizures for various reasons. But he still suggested an EEG to record her brain waves.
None of this more precise diagnosis affects the general outlook for Laura’s health, which he counseled was quite grim. The doctor did say that despite the neurological problems, Laura is in excellent health — a good indicator. Moreover, since the cancer elsewhere seems to be relatively stable, that’s also a good sign. It’s stuff we’ve heard before, but good to hear it independently multiple times.
Treatments range from “very aggressive” to “low risk”. This is clinical code. The way I see it, “very aggressive” refers to a treatment that is dangerous and/or has awful side effects, but has the low chance of a big increase in survival or reduction in symptoms. “Low risk” is something that probably won’t hurt you and probably will help a little bit.
The very aggressive option is something called intrathecal chemotherapy. It involves brain surgery to install a tube into the spinal fluid allowing for direct administration of chemotherapy. Since Laura is currently in good health, this is often recommended, but the way we see it, if a procedure has a higher chance of a bad reaction (20%) than it does of success (10%), when “success” doesn’t necessarily mean a reduction in symptoms, and the typical time to remission is measured in weeks — well it’s hard to justify taking such a risk and wasting valuable time on it. Of course, on the other hand, there is a small number who do respond, so there’s always this horrible feeling that dismissing an aggressive treatment is giving up or not trying hard enough.
But Laura just doesn’t think it sounds like it’s worth it. And when she told the doctor that her priority was too maximize the amount of healthy time that she could spend with our kids and family, he didn’t encourage her to go that route. Maybe later, if symptoms become much worse in some unbearable way (the doctor described Laura as currently “relatively mildly affected”), but for now it looks like she’ll take a less aggressive route.
The route that seems to make sense is to choose relatively low risk options to treat symptoms. If treatments don’t work, then consider escalating the treatment to more aggressive options. If new symptoms arise, consider new treatment options. That way Laura can maximize her time with good health and mild symptoms, and increase the risks only as things worsen — which they’re almost certain to do.
That route probably initially involves something called whole brain radiation (WBR). It sounds awful, but it actually is not very risky (rarely causes brain damage), has few immediate side effects except fatigue, and the long term effects, if you’re lucky enough to live to experience them, are mostly manageable. It’s possible that her symptoms could be immediately relieved by radiation. The goal is to radiate the entire head to kill the cancer cells in the spinal fluid surrounding her brain that are most likely causing the problems. It’s a daily treatment for two weeks near home. And since Laura’s leg is broken it’s not a great time to be traveling, so she can do the radiation treatment while her leg heals.
In addition, she’ll probably follow that up with an oral chemotherapy pill that is known to go through the blood-brain barrier. The drug is usually well tolerated (i.e. minor side effects), but there have been some case studies (although no definitive clinical trial data) that suggest that this drug helps control cancer to the spinal fluid. It’s what oncologists call adjuvant treatment. A side benefit is that this drug may also keep her systemic cancer (the cancer in her bones and chest) under control.
Down the road, a surgery option is a shunt. Relative to other brain surgeries, it is low risk. A tube and valve let excess spinal fluid escape, so the spinal fluid pressure remains low. The neuro-oncologist believes that this could immediately eliminate Laura’s symptoms. But it does nothing to control cancer growth.
That’s about it for now. Tomorrow we meet with a new breast cancer oncologist who we hope we’ll like enough to replace Laura’s current primary oncologist. We’re hoping this new oncologist will help us sort out some of our options.
Right now Laura is thinking a lot about all the things she wants to get done — nothing big, mostly things related to accumulated stuff around the house that she’d like to see turn into memories instead of junk. But Laura’s big anxiety is the uncertainty about how long she has to live. On the one hand is the awful feeling that her frequent falls (another one today) signal a decline. We know that sometimes the disease can progress quickly. On the other hand, she has done pretty well so far and she realizes that she could be here next year laughing.

It was an unexpectedly full day today. I took the girls to a music class this morning and stopped for a snack at Elmer’s, a schizophrenic little store in Ashfield. When we got home, Laura was on the couch with ice on her leg. She had fallen again, but this time she hurt her leg. It was similar to other falls recently; she briefly blacks out and has tremors. We don’t know exactly how she fell because nobody saw it, but she couldn’t walk on her right leg.
Meanwhile, we got a call from our neighbors who had borrowed my pickup two days before. The whole family — a 3 year old friend of our kids, dad, and mom great with child — were driving in my truck this morning to pick up their car that was in the shop. The car slid on some ice sideways down a hill into an embankment and rolled over onto the top of the cab! Pregnant mom, due literally any day, apparently climbed out of the window upside down. Miraculously, nobody was hurt. And I say miraculously because I later drove to the junk yard where it was towed and found the truck to be a total loss. Amazingly everyone is alright, but I can imagine the shock they must have been in! Apparently they were taken by ambulance to the ER in Greenfield and the EMTs were stymied that they couldn’t find any injuries. I am so so so so so glad they are OK.
But that wasn’t the only trip to the ER today. When I got back home from the junk yard Laura still couldn’t walk, so away we went to the Greenfield hospital, too. Unfortunately, the xrays showed that Laura broke her leg. Apparently the fibula, which she fractured, doesn’t carry much weight — that’s the tibia’s job — so she didn’t get a cast or splint. When the nurse was about to release Laura, she said, “I’m sure with all you’re going through that you needed this like a hole in the head.” And as the nurse left, Laura slyly said, “you can’t even begin to know.” (One of the possible cancer treatment options involves drilling a hole through her skull directly into the spinal column to allow direct delivery of chemotherapy.) Sorry, we think it’s funny.
They sent us home with a walker. Laura seems to be handling it all pretty well. I have to admit that despite all my neurotic obsession with cancer — the facts, the prognoses, the tests, the treatments, etc. — I never gave much thought to how difficult it might be if Laura became permanently immobile. Getting around the house isn’t easy. Getting in and out of the house is harder. Inside, Laura has to scoot backwards up the stairs and we haven’t figured out, yet, how she can easily stand back up at the top. Hopefully it will heal quickly, but this has definitely added an unexpected twist to decisions on treatment and travel plans.
We’ll be back in Boston tomorrow (Thursday) and I’ll post again tomorrow night.
P.S. Unrelated, but I’ve been meaning to say: recently I’ve heard several people express concern that a visit or phone call might be “too much”. Or when people call they’re worried about disturbing Laura and sound surprised when I quickly hand the phone over.
Don’t hesitate. Laura was depressed and bedridden. But right now, even though things really suck, she’s OK. So call or visit whenever you want (unless you’re coming from out of town — then call us first). And if you really want to “do something”, send her flowers. She loves flowers. We like unarranged mixed bunches the best.

Laura and I got up at 4:30 this morning to be in Boston to meet her “2nd opinion” oncologist. He seems like a good man. Pragmatic, bow-tie sort of guy who plays a good detective. He’ll rapid fire a number of seemingly unrelated questions, skip over other questions we’ve heard from others, and quickly size up the situation. We hadn’t seen him since August, so all of Laura’s neurological symptoms and her response to chemo were all new.
The upshot was that he advised Laura to stay with some standard “baseline” treatments for mets (monthly bone strengthening IV and estrogen suppression) and to see a good neuro-oncologist to figure out what’s causing her headaches and treat them. He didn’t feel that there was a rush to begin any treatment immediately and was upbeat about her prognosis because she wasn’t burdened with other systemic disease problems. He gave us the names of several Dana-Farber neuro-oncologists.
He was certainly more optimistic than Laura’s primary oncologist, which was nice to hear, but that’s partly his style. He also told us in August that Laura’s mets could be put into remission for a “very long time.” I remember how we hung on those words.
Anyway that was about it for the consultation. But I suspect that his optimism might have diminished when Laura collapsed as he was leaving the room. I say this because he called us at 10 o’clock tonight apologizing that he couldn’t do more for her when she fell this morning and he wanted to make sure that we had got an appointment with a neuro-oncologist.
When Laura fell she probably passed out briefly because she didn’t remember it. She often shakes during falls or loss of balance and when the oncologist witnessed the episode he wondered aloud whether she might be having a seizure. That might suggest a worse state or complicate the diagnosis, but he was very confident that a good neuro-oncologist could handle the case.
So Laura has an appointment back in Boston on Thursday.
We got Laura in a wheelchair, and she and I went to get some breakfast in the hospital cafeteria. It was probably not yet 9 o’clock and so we decided to go to a museum in the city before heading home. Laura usually recovers fully within ten minutes of an episode,
so by the time we got to the
Isabella Stewart Gardner Museum there was no way of knowing that anything serious had recently happened. We were briskly walking down the wintery streets of Boston just like everyone else.
The museum itself was very interesting. It’s the legacy of a wealthy, eccentric, and strong-minded Boston woman from the turn of the century. Part of the fascination with the place is that her will stipulates that every piece of art and all the building must remain just as she left it.
We got home late this afternoon and then many of Laura’s girlfriends drove up to Ashfield and met her at the Lake House — our local pub. She said it was great.
Despite the five hours of driving, vomiting, half a dozen bad headaches, and possible seizure, we both agreed that it was a really good day!
It’s all relative.

When I think of my family, I always pause to think about how often they were willing to do “the robot”. Or, anything else silly for that matter. That’s what I love about my family. I also love that we’re very close, and that we’ve never really given up on each other. Growing up as co-op loving, pseudo-hippies has its advantages and taught me a lot:
1) Love your family above all else.
2) Find time to laugh (or, try to make others laugh).
3) Stick up for each other.
4) Certain words will *always* be funny. Always. You know which ones I mean.
5) No matter how rotten you’ve been to a parent/sibling, they’ll always love you back.
I’ve learned a lot from my older siblings. I credit Heather and Laura for instilling in me a love for good music (and, to a certain extent, style). Thanks to Laura, I never fell into the pit of despair known as “hair metal” or “mainstream pop”. Mind you, if that’s your thing… well, give Negativland and English Beat a listen. I credit Elena for showing me compassion for others. In fact, she and my other sisters were destined to be great mothers someday. I credit PJ for keeping me in line, even though I fought him tooth and nail over it.
One of my favorite photos–one that is displayed in my classroom–is the one in which we are all doing “the robot” on our parents’ front porch. I love being able to explain to my students what kind of family we have. They ask questions about my siblings and my parents. They want to know about my brothers-in-law. They love hearing about my nieces and nephews. And, I love sharing with them what “family” means to me.
This hard time has made me (and, all of us) understandably moody. But, it has also made me reflect on how lucky I’ve been to be born into this family. I am fortunate to have three outstanding and loving brothers-in-law. I think we can all agree that our parents are especially top-notch.
They’ve had to put up with five teenagers in the house at one time. They put us through Catholic school, whence we cultivated further love for one another. They provided a supportive, yet disciplined household. Sure, we weren’t perfect children. But, our concern for others is proof-positive that they did a heckuva job. By the way, if you find my modesty just drop it in the nearest mailbox. Can you tell I’m proud to be a Coleman?
My siblings are very dear to me. I owe them my ability to argue, sense of humor, taste in movies, musical preferences, snappy comebacks, fond memories and my life. When one of us is hurting, the others feel it. If one of us makes a pie that goes horribly wrong, the others offer advice on improving it (but will probably choke it down anyhow). If one of us makes a beautiful work of art, we admire it for its inherent loveliness.
I like doodling. I think Laura and Elena share that affinity with me (though, I draw the line at mere scribbles). Did you catch that pun? Gold! I think Heather and PJ probably have some secret book deal that they’re not telling the rest of us, though (I want advance copies, you two). Seeing artwork that Laura would bring home from high school always blew me away. Her silk-screened design for CYO was dynamite. I can still see that design of the sharp-angled head in my mind’s eye. Her photography and work on the DJO yearbook are true gems. Don’t believe me? Take a look at her Colophon page. Now, her current artwork includes two wonderful children. I think it’s best work so far. David, of course, brought a complementary yin to Laura’s yang, and I’ll always love him for that. Without a doubt, my family is like priceless art. Absolutely priceless.

I wasn’t really sleeping last night, so when I started to see sunlight, I got up to take a walk. It was cold out and snowing lightly. The flakes looked light and large. The dusting on the sunken packed snow had a pretty, rough texture that caught the dim light in the dawn. Walking into the woods was easy going. At the creek ford there was a layer of ice on the water and I could see bubbles of air, small leaves and twigs race by beneath it. As I walked up the hill away from the creek the sounds of the water faded and there was only the crunch of my boots in the snow. When I stopped there was utter silence.
Repeatedly I’d take a few steps then just stop, stare into the monochrome scene of tree trunks and snow, and just soak in the silence. It’s these times that I start to really savor the details literally in every direction. A single, soaring hemlock standing among the leafless hardwoods looks unbearably beautiful. The random and infinite variations of branches. The contours of the snow. My footsteps behind me, disappearing into the trees around a turn. Silence is a powerful force.
I have always enjoyed hiking. I can remember so well the many times as a college student in Virginia driving alone towards a weekend camping trip somewhere west in the Appalachians; I can remember so well the swelling feeling in my gut as I left the flat tidewater of Virginia and could begin to see the crests of the Blue Ridge. It was the enormity and the magnificence. It was the reward of an awesome vista after a hard slog. It was the excitement of discovering always new places, new routes, new sights.
But I also remember well a hike I once took with a graduate student friend in California years later. He was an older student who had already spent some time battling cancer. I liked to think that because of his experience, he was never in a hurry. We set out for a hike of several miles, but walked maybe less than one in more than hour. It seemed that every plant, every slug or bug, every odd or curious sight has us spending minutes to look, to talk, to digress. My friend wasn’t meticulous in his observations, haughty or annoying in his comments, or even particularly knowledgeable. He was just inspired by the small things everywhere and loved to follow where nature and conversation, intertwined, led us.
And so I stood in the woods this morning and thought of that time. And I soaked in the silence. And I stared at the beauty of a woods that was in every respect absolutely unremarkable. And I cried for a long while and savored it all.

I think that if Laura were a superhero, her name would be “Super Awesome Creative Girl”. It seems like she has always been in the process of creating stuff. And always managing to “capture the moment in pictures”. I remember that she had the coolest scrapbooks/photo albums, even in grade school. I loved to go back & look through them time & again, even when they started to become a little embarassing, what with all the fashion disasters they recorded!!
Laura’s wild sense of style is also one of her trademarks. Anyone who has seen her incarnation as Gene Simmons can attest to that!! I think she’s always prided herself on having a unique look. I remember she got a pair of my mom’s eyeglasses from the 60’s and had her prescriptions put in the frames. The semi-annual rummage sale at St. Alban’s Church in Annandale was THE destination for unique fashion finds, at only 50 cents a pop. I seem to recall this great men’s overcoat, grey with bits of blue … very 80’s Brit-Pop. Seems to me we also clocked a bit of time at “Sal’s”, a.k.a. the Salvation Army. I think the hunt was a big part of the appeal … and to find something no one else would have.
Other random thaoughts are about Laura’s adventurous spirit. You might call it wanderlust. Compared to Laura, I am SOOOOO boring in that regard. The only two places I’ve been to out of the country, I didn’t need a passport for (now I would, but just a few years ago, you didn’t). Anyhow, Laura’s been all over the place … and because of her wonderful ability to document it is such a visually interesting way, you are transported as well. From Australia, Laura brought me back a fantastic boulder opal. It’s now set in a ring, and, needless to say, it always reminds me of her. From China, she brough me back an intricately carved seal and red ink.
Speaking of red, remember her red wedding shoes???? One of my mom’s & my co-workers overheard a fairly loud gasp from someone … “oh my gosh, RED SHOES!?!?!?!”. Laura says that the red was for good luck, but, I don’t think she minded at all shocking some old biddie.
Well, as you might guess from all this rambling, I’m not very well organized, and you would be right. But, I will continue to share little bits and pieces as they come to me.
Much love to all,
Heather