Loose Strife

After talking to a friend who follows this blog by email, it occurred to me that many of you haven’t read all the comments on the previous post. So let me recap: Laura and I went to the ER at Brigham-Women’s Hospital in Boston (the hospital affiliated with Dana-Farber Cancer Institute, across the street) on Friday night. She had a new full body MRI and cancer progression was found to have affected the nerve roots at the base of her spine and her troubles walking were consistent with this finding. This is also a common tumor site for leptomeningeal cancer metastasis. (I’ll start calling it CSF (cerebrospinal fluid) mets.)
We didn’t actually see her neuro-oncologist, but he reviewed her case including the latest radiology reports remotely and agreed with the attending oncologist, neurologist, and radiation oncologist that the best treatment is steroids to reduce swelling in these nerve roots and directed radiation to kill the cancer cells there. (I used the word palliative yesterday, which was a poor choice. Sorry to alarm some of you. Besides reducing pain, the radiation may stop the cancer progression at this site and with physical therapy Laura may be able to recover some of her lost muscle control.) Chemotherapy was not believed to be an appropriate treatment at this time.
Radiation physicians are hesitant to start radiation on a patient who has received radiation from another doctor because it requires the transfer of copious records and still runs the risk of over-radiating an area due to overlap from previous treatments. And we didn’t want to do radiation in Boston because the treatment is a prolonged daily process. Since there was no immediate need for attention from any of the other specialists at BWH/DFCI, Laura was transferred to Cooley-Dickinson Hospital, our local hospital in Northampton, where she has received the rest of her radiation treatments.
Due to poor communication and coordination, Laura didn’t arrive in Northampton until Sunday afternoon. But once there she immediately began the radiation treatment and was admitted to the hospital. I don’t know any details about the treatment plan because I haven’t had time to talk to her. She did indicate that a day and half of steroid injections hadn’t seemed to improve her leg pain or control. But it’s not apparently worse either.
Simultaneous with Laura’s arrival in Northampton, Naomi had her little birthday party. And afterwards, the girls, Laura’s parents and I went to visit Laura in the hospital. She’ll be in the hospital at least another day for observation, pain management, and coordination with her local doctors. I forgot to write down the phone number, but you can reach her via the switchboard at 413-582-2000.

It has been a frustrating week long wait in which Laura’s neurosurgeon, great as he might be with a knife, failed to act to get her in front of a neurologist as her legs have continued to decline. (Laura fell 2 nights ago. She didn’t hurt herself, but is now using a walker and is always accompanied. ) Then more lost urgent messages for her oncologist today… Grrr.
Finally I got connected with her oncologist who said that we should stop dealing with the runaround and get to Boston right away. I quickly reached her neuro-oncologist at Dana-Farber and he told her to get to the ER at Brigham-Women’s.
Fortunately Laura’s parents came up on Tuesday, so we could leave the girls at home. But we’re sad to since Lily was very upset when I told her my intention to take her mom to the hospital in Boston. After all, I’ve been spending the last month trying to ease her anxieties by ensuring her that I would never abandon her. And Naomi has a birthday party on Sunday.
Anyway, here we are. She was quickly admitted and a plan will be presented shortly. Probably more scans again to start with.
If I can I’ll post updates on the comments section to this post. .

Yesterday Laura went to her first physical therapy meeting without any certainty that her problem was truly muscular, but it was at least determined that Laura’s upper legs are very weak. She can’t squat at all, for example. We knew that. Laura got a cane.
Laura’s brain CT came back clear. This morning she met with her oncologist and with the neurosurgeon this afternoon. Neither had any ideas. We were under the impression that her neurosurgeon was skilled enough to do a neurological work up, but he is not, so couldn’t offer any diagnosis — he could only say that the shunt was working and leg troubles weren’t due to hydrocephalus.
The two doctors will be talking soon and will refer Laura to a neurologist. So for now we’re just waiting.

Just some photos that I took today of the birthday girl that turned out really well, I think.

(Click for larger slideshow.)

The last ten days or so have been warm and sunny causing spring to finally burst in New England. The trees are budding, the grass turned from brown to green seemingly overnight, the peepers are singing by the pond. Everything has just popped and it’s been a wonderful and welcome sight.
This past week was spring break at the preschool, so the kids have been home with us. We considered going somewhere for a few days, but you can’t find a much better spot than Ashfield right now and it’s good to be home.
As soon as it hit the 60s, Lily and Naomi were in their bathing suits, playing in the sprinkler. And once the daffodils started opening, the girls have hardly stopped picking them. My inclination was to savor the flowers while they lasted, but seeing that we have probably hundreds in the yard, Laura told them to pick all they liked. And now I’m glad they did.

Friends have been visiting throughout the week and we’ve been catching all sorts of critters: salamanders, tadpoles, bugs, frogs eggs, fish, and snakes. Thanks to the contagious enthusiasm from the other children, our girls shed some of their squeamishness and hesitancy as they got caught up in the excitement of squiggly things trapped in buckets and plastic containers. I admit that I keep hoping that interest in dress-up and princesses will wane in favor of outdoor adventures. But I’m up against personality and gender and marketing forces that are way too tough for me to compete.

Still, I built a bridge across the creek and the girls had some fun splashing in the water. I put together a climbing dome outside and hung a tree swing. I think I’m making some progress. The other day, Naomi dressed up and then spent time with the hose making mud soup for the prince.
The irony among all this spring happiness over the last couple weeks is that Laura’s legs have been feeling progressively worse. Getting around the house and outside is becoming increasingly difficult for her. Both legs are weak now. She takes a long time to pull herself up the steps to the second floor. I built a handrail outside so she could get into the house. On flat ground she appears to almost walk OK, but says that she can feel her legs getting weaker as though they might collapse. Last night she told me she was getting worried.
So late last night and early this morning I had numerous phone conversations with her oncologist, neuro-oncologist, and neurosurgeon. It seems likely that the problem is neurological and very unlikely that her shunt is malfunctioning. But nothing is certain. It would be good to know for sure and Laura doesn’t want to stew over the “what ifs” for too long — particularly if her mobility worsens.
The health care system is such that your problem is either handled “normally”, which means 1/2 week to multi-week delays for each test and appointment, or an emergency, which means the hospital ER. We wondered how urgent the situation was and that was one of the main reasons I wanted to talk to her doctors. The upshot seemed to be that things weren’t truly critical, but to get things happening quickly everyone would say it was an emergency.
So at about 11 this morning her oncologist worked with the hospital to get her in for a brain CT scan at noon. We quickly packed the girls off to a very kind friend for the afternoon and rushed to the hospital. With the scan now done, Laura will see her neurosurgeon probably Monday or Tuesday to get a neuro “work up” to try to definitively determine what’s going on.
We headed back home this afternoon. Oh yeah, it’s Naomi’s third birthday today. I picked up some hostess cupcakes at the convenient store and after dinner poked a candle in one and we all sang for her. Pathetic, I know, but no surprise that the girls thought these amazing little cakes were the bomb. And so it goes.

Sorry for taking so long to post about Laura’s MRI scan results. The originally scheduled MRI last Thursday had to be rescheduled to this past Tuesday and we just got the results today. The MRI confirms the PET/CT scans indicating that cancer is stable. Recall that there were three concerns with her back that prompted a full neck to pelvis MRI scan: possible encroachment to the spinal cord at the neck, a compression fracture at the middle back, and large tumor deposits in the lower back. It turns out there were no significant changes between her last scan at the end of January and now. The neck issue is not threatening any nerve damage. And the other bone changes are stable, so there’s no cause for alarm. On the contrary, relatively speaking, this is very good news.
In addition, Laura’s neurological state seems to also still be stable — another 2 weeks with no ill effects. Truth be told, that’s not completely accurate. Laura has minor hand tremors that we think have gotten a little worse. But certainly no headaches or serious nervous system effects.
I asked the doctor how she reconciled Laura’s very good state with the statistics that most people with leptomeningeal mets decline rapidly. The reply was that WBR could have had an impact, but the other suspicion is that Laura’s cancer is very hormone responsive and remaining stable due to the ovary suppression drug she’s on.
Maybe it is hormone responsive or maybe it isn’t. Laura was taken off hormone therapy early in her initial treatment last fall because her condition was rapidly worsening. But she wasn’t on hormone treatment long enough to definitively say it wasn’t working. Instead, she was put on chemotherapy, which as a side effect, also puts one into menopause. So, maybe the chemo “success” was at least partially due to the hormonal effect.
Whatever the case, Laura has somewhat remarkably remained stable. And as for treatment, she’s just going to continue with the minimal drugs that she’s currently on: ovary suppression, bone strengthening, and as needed pain control.
Laura’s actually feeling conflicted right now about treatment. She’s frustrated that she’s not feeling great — her broken leg still bothers her, some back pain, achiness, fatigue. Her leg was xray’d again and it looks fine. Physical therapy is planned, but another 2 weeks out, so her oncologist is trying to pull some strings to have her seen sooner. But although she’s not feeling great, relative to the way she felt before surgery, she can’t complain and wonders whether her current condition is acceptable: the new normal.
On the one hand, she wants to do something about her aches and pains. On the other hand, she’s very resistant to new drug treatments — surprisingly so and more than I am. I think she recalls her experiences from last fall and really dreads being on more pills. It’s something that she’ll continue to be considering in the coming weeks. Her oncologist heard Laura rattle off her various issues and started to push for chemo again, but Laura flat out refused.
I definitely understand. Who wants to mess with a good thing — even if it’s not perfect? Today was another gorgeous spring day and Laura relaxed on the porch most of the day while Naomi played. The two strolled around the yard picking daffodils while I was yanking brambles along a fence line. Life is good right now… except for the aches and pains. Laura has a strong hope that physical therapy will be the help she needs.
Last night there was a PBS program about metastatic cancers. It’s excellent. If you missed it, it may show or be rebroadcast at a different time in your region. Or the whole program can be viewed online. I thought it was outstanding, touching on a lot of the life and death issues faced by people with advanced cancer, their families and doctors. When is enough; how the research clinician wants to push experimental drugs; the odd guilt that you’re letting down your friends and family by not fighting “hard enough”; the sad truth about the low success rates for advanced cancers; the emotional impact of diagnosis and treatment decisions; etc. Even the follow up interview piece, although not nearly as poignant, was good because it touched on two key points about cancer: the importance of living in the moment instead of suffering in the past or the future and the idea that hope is not just about a cure, but also about the confidence that treatment will be expertly administered, that pain will be comfortably controlled, that family, friends and doctors can be trusted and so on. I recommend the whole two hours.
Let’s see… before I finish, a couple more newsy bits. There’s only a few spots of stubborn snow in Ashfield now. The seasonal springs and resulting mud are quickly drying up. We’ve got some early veggie starts already in the ground. We spotted a river otter in the pond. We took a day trip to Boston for Lily’s birthday and last weekend she had a fun tropical birthday party, inspired by our recent Hawaiian getaway. Naomi will be three next week. And Laura also had her 38th birthday last week. The tulips that friends came to plant last fall are starting to bloom. At one point it seemed like she wasn’t going to enjoy all these gifts, but now things are so different.

February photos are finally posted. You’ve seen many of these already.

Laura and I met with her oncologist this morning to review her latest tests. Laura’s breast cancer marker went down again — it’s essentially in the normal range. This is good news since she hasn’t been on any chemo treatment, only a hormonal treatment that shuts down her ovaries. Better still, her PET/CT scan seems to also suggest no progression. It was particularly good to hear that the met sites did not appear “metabolically active,” which is apparently a finding of the PET scan. (Before this most recent scan Laura only had CT scans.) So the scans seem to suggest that she is stable, and since none of her neurological symptoms have returned, the cancer in her spinal fluid also seems stable. All very good news. But there are some caveats.
The bone metastases are still seen throughout her body and notably there’s lots of cancer in her lower back where she has back pain. We knew that, but a decision will have to be made whether to deal with that pain through pain management or to try chemo or radiation in hopes that the pain would reduce if the cancer regressed.
There’s a second possible compression fracture in the middle of her back.
And last, the radiologist noted that cancer in her spinal column near her neck could impinge on her spinal cord if it progressed, which is a worry. Laura has minor pain in her neck.
To address all of these, she’ll get another MRI on Thursday for a closer look at her entire spine. Most likely, nothing new will be found in the MRI and, after some discussion with the oncologist today, Laura and her doctor agreed that probably no new treatment will be added. Instead she’ll be monitored regularly for signs of progression.
It might sound a little counterintuitive to do nothing — nothing new, that is. In previous posts I had mentioned starting a new chemotherapy drug. Alternatively, she could retry Tamoxifen, a hormonal drug that didn’t seem to work the first time around, but was tried for only a short period. She could also aggressively choose radiation. She could even choose intrathecal chemotherapy (chemo injected directly into her spinal fluid). But all these choices have side effects — some minor, some not. If she’s doing relatively well, then maybe ride the wave. And if a careful watch is kept, then new options can be added as needed.
This is a little unconventional, but the truth is that there are very few young, healthy women with leptomenengeal mets and stable mets elsewhere who are in good shape four months after major neurological symptoms hit. (Truth be told, I actually have found one, and she is thriving after almost a year since her diagnosis.) The academic papers suggest treating the healthier patients with more toxic treatments. But pretty much everyone involved in these studies is experiencing severe neurological problems (headaches, inability to walk, confusion, hearing loss, and so on), so a lot of the treatment decisions are based on how to relieve pain and suffering. From a lepto mets perspective, Laura is currently asymptomatic!
As you know, Laura decided to do Whole Brain Radiation based on this conventional thinking. Now we wonder whether it was the right choice. It’s very possible that WBR has contributed to her overall well-being (i.e., it wasn’t just the surgery) or has kept recurrence at bay. However, it’s also possible that WBR had no effect on the lepto mets, but is the cause of her current fatigue. Nobody knows. Assuming one has the time, and Laura seems to have caught an unexpected break, maybe it’s better to be systematic: try new treatments in turn only as new problems arise.
Another insight into treatment decisions is recognizing the fact that in all likelihood the lepto mets will be her downfall. If that’s the case, then perhaps it’s wiser to hold off on bone mets treatments unless pain is unmanageable or to wait for whenever some other red flag that was raised appears to be a serious threat. Preventative medicine has become such a dominant paradigm that it’s difficult to convince oneself that a palliative approach is important to consider.
Ultimately it boils down to unknowns about survival and response to treatment. Nobody knows. But at least we do know we’re not too far out in left field in our thinking. Laura’s oncologist’s recommendations are pretty much in sync with Laura’s treatment attitude. Her onc said today, “for now, less is more. We can add later as needed.”
So for the last several days Laura’s been back on modest narcotics, mostly at night, to deal with pain. She got a referral today to see a physical therapist to help work out pain management and rehabilitation plans for her back and broken leg. If pain becomes a bigger problem, then she’ll consider radiation again. In any case, she’d like to avoid prolonged, high doses of narcotics because we know from experience that it is extremely fatiguing. We’ll get the MRI results next Tuesday. Besides all that, the big general goal is just to stay healthy: exercise, sunshine, fresh air, green tea, garlic, fruits and vegetables!

Photos from our week in Kauai are now available. More photos from the rest of our trip will show up some time later. I’d appreciate any good photos from others, too. We often didn’t have our camera or missed a memorable shot. Drop me an email (no attachments larger than a few MB, please), send me a link, or snail mail a CD, if you can. Thanks!

At last we’re home again! All the way from Boston until the turnoff to Ashfield there wasn’t a spot of snow on the ground. But as we left the Connecticut River and headed up the mountain the snow was very present. There were still several inches on the ground when we pulled up to the house, although Laura and Lily spotted tips of daffodils poking up in a clearing. But today they were covered by another 5 inches of snow! The heavy, wet stuff stuck in clumps on the branches so it looked like we had cotton trees growing in our lawn. The dirt roads are a mess. The town plow truck got stuck axle deep in mud outside our house this afternoon.
So spring is still a ways away, which is a bitter pill coming from Virginia where the cherry blossoms were already popping. And of course before that we enjoyed much more temperate and warmer climes. Even still, it’s good to be home. And maybe the contrast puts our trip in all the more wonderful of a relief.
And what a trip it was! We were daring to go, but Laura was in her best health since late last spring, so we were lucky and feel tremendously pleased that it all worked out. Our time in Kauai was decadent, beautiful, and relaxing. We had no troubles to speak of. The grounds were gorgeous. The pools were sprawling. The ocean delightful. The weather close to perfect.
Besides the lounging, our highlights were probably the tropical gardens, some surprisingly good food, and an island tour by small helicopter (with the doors off!). I love to fly, but had never been in a helicopter, so the flight was a huge rush. From the air we flew over the enormous Waimea Canyon, into the crater in the center of the island, and among the shear cliffs of the Napali Coast. We spotted wild pigs in the bush and saw a baby whale turning circles off the coast. Luckily, Tio PJ kept Lily and Naomi busy at the beach while we were airborne. It was a big treat to have PJ along to watch the girls. Everyone had fun. Except for the helicopter, it was simple pleasures wrapped in extravagance, but well worth the occasion.
Thanks to everyone whom we were lucky enough to meet up with while we were in Northern California – friends from school and work mostly. Most of our friends have children of similar age as our girls, so each new visit was a lot of fun for everyone; the adults could gab while the kids were occupied with new friends. After a few visits, Naomi would enter a new house and immediately ask, “do you have dress-up?” Naomi and Lily loved playing with Lucas and Max at Martin and Estaphania’s, Bryce at Jen and Suzette’s, Madelynn and Amelia at Mo and Allyson’s, Ray and Emily’s Arlo at Tao and Jasper’s, Mark and Olivia at Cyrus and Amy’s, Abe and Aria at Naomi and Asher’s. The most impressive get together was among many from Laura’s first mom’s group — friends that she made when Lily was only a few months old. It was a full house of parents and kids and a lot of fun. Thanks to all of you. And special thanks to Cyrus for scrumptious pork chops. To Martin for a loaner car during the whole week. And especially to Jen and Suzette for letting us crash at their house. Last, we wanted to visit with a friend of ours who is also struggling with breast cancer and we were really pleased that we did. Deborah, you’re amazing! Keep up the good fight!
Thanks to Laura’s Aunt Ruth for hosting a bunch of extended family on Laura’s mom’s side of the family (plus my aunt) in LA. Manuel came all the way from Vegas; Ralph and Gary from San Diego! And I found out that Robert reconditions tractors for a living! I had no idea. It’s amazing that we all could meet up.
In Santa Cruz, Lisa, Carlos, and Vesper, we were so happy to see you! Thanks Naomi and Asher, David and Lu. All the best for a speedy recovery, Lu! Really, we were so so happy to see everyone in California and very pleased that Laura could make it after all and do so in such good health!
Ironically, we didn’t visit with all the Californians in California. Laura’s mom’s sister Julie from the central valley came to Virginia for an extended Easter visit. And so did her mom’s other sister from Florida. I don’t think her mom and aunts had been together in a very long time and we’re glad to have been the impetus to make that happen. More cousins came along, too.
On Saturday we visited with a big gaggle of old friends from W&M and Laura’s elementary and high school days. I won’t begin to list them all because I’d probably forget half, I’m afraid. But folks kept coming from far and wide. My old roommate Tom drove four hours from the eastern shore bearing white sweet potatoes. What more could we ask for?
And then there was Easter. Almost 40(!) at the Coleman’s house for homemade tomales. Sabroso!
Obviously our trip was long and eventful. But it was also enormous fun and, I’ll say again, we had a wonderful time seeing everyone, especially considering that Laura didn’t expect to be able to ever travel and visit again and instead was able to do so while feeling amazingly well!
Given all that, it may not be too surprising that for the last part of our trip, Laura and I had been feeling exhausted and by the time we got back to Ashfield we were walking zombies. Lily and Naomi weren’t sleeping well and as our trip was winding up the nights became a sort of musical chairs — it took hours to get Lily to sleep, then she awoke in the middle of the night as I went to bed, then one child or the other crawled into our bed, Naomi was bouncing off the walls in the twilight hours just as I finally got to sleep again. And in between the interruptions, Laura and I weren’t sleeping very soundly either.
While we were in Virginia we chalked it up to travel. Lily cried for hours at night, but maybe she was just reacting to the daily changes and lack of routine. Laura’s back began to hurt, but maybe it was just the guest bed. When we got back to Ashfield, Laura was completely exhausted and spent the first full day at home mostly sleeping. But maybe it was just a natural release after a long, enjoyable and emotional trip.
I felt somewhat angry with Laura at first. I wanted to keep telling the same uplifting story to all our friends. “She’s better than ever!” I wanted Laura’s doctors to be amazed. But Laura said the truth was that her back was acting up, her leg was still bothering her, and she was feeling wiped out.
By the second night back home, Laura’s back pain had worsened and she couldn’t lie in bed without being in pain. She cried a little and we both admitted that we were scared that her bone mets were progressing. She spent that night and since then in the recliner and began pain killers again.
We went to see the oncologist on Thursday and Laura expressed her concerns. (I still insisted on inserting a reminder that except for the last several days, Laura has had six weeks with no neurological symptoms and terrific stamina!) The doctor ordered a PET and CT scan for next week. Laura hasn’t had scans since January and also hasn’t been on any cancer treatment since then, too. So next week’s scans will reassess her metastases and that will help determine next steps. We already know that the probable next steps will be to begin a new chemotherapy and receive targeted radiation to her lower back, depending on the specifics of the scan findings.
We’re hopeful that the new chemotherapy, Xeloda, will have only minor side effects. It’s an oral pill, instead of an intravenous injection, and is well tolerated by most patients. Additional radiation treatments are mostly just a daily inconvenience. We live far from the hospital, so each new radiation session steals time that might otherwise be better spent. With the body scans and the back, brain, and leg radiation treatments, Laura has already received a tremendous amount of rads — which has its own short and long term complications. One of the more common side effects of the whole brain radiation (WBR) is generalized chronic fatigue that can happen any time from weeks after treatment to a year or more out. Maybe it’s already begun?
Ironically, the prospect of long term treatment complications is a much more real concern now. Some of the other possible long term side effects of WBR are awful, but two months ago Laura’s neurological symptoms were so bad that any worries about long term effects were completely overshadowed by her interest in immediate relief. In the same vein, we’re back to worrying about cancer spreading elsewhere besides her nervous system. Laura has experienced such a remarkable reprieve that it’s hard for me to imagine her getting worse again. But maybe she is already. Or maybe it’s just a blip on her way to being cancer free.
All the uncertainty is very unsettling and it makes it difficult to know how to prioritize our lives. Before the surgery we feared that Laura had only weeks to live. Now we think in months or years. But realistically even a long cancer survival is punctuated by unexpected problems and treatments. So what do you do when you wake up every morning?
At the most basic level is the question of how much do you live for today and how much do you live for the future? There’s the old tale of the hick who never patches his roof. He says, “When it’s a rainin’ it’s too wet to fix it and when it’s dry it’s just as good as any man’s house.” Sure makes a lot of sense unless you’re going to be living through a lot of rain showers.
More concretely, we had originally planned to spend this spring putting thousands of whips, plugs, and seeds in the ground. Quite literally, if we’re not able to reap the seeds we sowed, then why bother? Maybe the best answer is that the pleasure of working the soil in spring is just the sort of living-in-the-moment activity that defines carpe diem. I don’t know.
I’m off to bed. Tomorrow we’ll hit a local sugar house for some fresh maple syrup. That’s one sure sign that spring is around the corner.