Loose Strife

A couple days ago I posted “nothing new about Laura recently,” which was pretty much true at the time. Then she had a series of remarkable days this past weekend followed by the last 30 hours, which have been pretty awful. But do you really want to read another post about vomiting?
It’s an awful topic and it is terrible to think about how much of Laura’s last year has been affected by vomiting. Some ridiculous number of my posts have discussed it. Vomiting is a common cancer problem, but normally it is associated with chemotherapy treatment, not cancer itself, and drugs are usually very effective managing this side effect. Consider, instead, how debilitating it can be to vomit spontaneously and uncontrollably. When it happens infrequently, as was the case for the past several weeks, then it’s upsetting and inconvenient. But when it happens a couple times per day then everything changes. Laura is wiped out and becomes gun shy about eating or drinking. Her attitude flips almost in an instant.
About two weeks ago Laura had a rough several days as she worked through different pain medicines. But that was resolved and she was well enough to go to Boston for the Komen race by the end of the week (the weekend before last). My big concern at that time was how best to keep her monitored because she is at risk of falling or choking. Her nurse told me that I shouldn’t leave her alone, so I arranged for neighbors, friends, and hospice volunteers to sit in the house with Laura when I was away. Having visitors stay at the house for several hours at a time has turned out to be very helpful — not just for me, but for our friends, too, who at last have some way to help that is needed, practical, and a relatively compact commitment. Many people are happy and relieved to help in this way… and I still get my house to myself at the end of the day.
The “monitors” continue to visit; a friend is coming tomorrow morning. But last week Laura’s condition seemed pretty stable and we questioned whether it was really necessary to have someone with her at all times. Although she suffers from crushing fatigue, she was up and moving about on her own without much trouble last week. And when she wasn’t up, which was most of the time, she was sleeping in bed for hours. It seemed like overkill to have people constantly monitoring her. Her nurse suggested that she get a “lifeline” device that she can wear on her wrist that has a button to call for help. (You remember the ad.) So we did. It’s not a perfect solution, but given her condition (fatigued and a little unbalanced, but mentally aware) it seemed adequate.
During this past week, Laura also decided to go to California on the 25th (next Thursday) to attend a wedding of good friends. I don’t like the idea. I worry that something could go badly and I also worry about how exhausting cross-country travel can be — there and back over 3 days. But we discussed the trip numerous times and she never changed her mind. You can’t deny what is essentially a dying wish, so I made the reservations. (I’m hoping she’ll be able to play that card for some time to come! The other wish is for a new handle and latch on our main exterior door. I haven’t done that, yet.) Laura’s friend Jeri will accompany her. You have to give Laura credit for continuing to choose the unexpected and do things that really matter to her and people she loves. And it definitely speaks well of her opinion about her own condition if she feels (or felt) up to taking the trip.
Then this past weekend was truly remarkable. I started having delusional visions of Laura returning to normal. On both Saturday and Sunday Laura was up by mid-day and didn’t go to bed until late at night. We had a friend from Santa Cruz spend Saturday night with us and Laura was awake, engaged, and eating well (albeit extremely small portions because she chews so slowly). On Sunday she took a stroll in the garden and stayed up until well past midnight tooling on the computer — something she hasn’t done for quite a while. And on Monday she was up and on the road by 8:15. She hadn’t been out of the house for about a week, but it went well. We met with a new neurologist in the morning and had lunch at a favorite mexican restaurant. After the neurology meeting she wondered aloud why she was wasting time at home when there’s so much that she could be doing. She seemed to be suggesting that she didn’t want to lie in bed waiting to die, but wanted to be more aggressive again dealing with her cancer and she wanted to take another crack at much unfinished business. But then late Monday afternoon she threw up and everything started to unravel.
She refused food, slept poorly, her back and neck pain worsened, she punched in extra morphine dosages, she struggled to get out of bed Tuesday morning, her nurse came and she threw up, she slept some more, successfully drank a milkshake, and slept some more. In the evening the kids and I went to Lily’s elementary school open house and when we got back it looked like Laura was doing better; I can tell just by looking at how quickly she moves her arms when she rubs her face. I got the kids to bed and brought Laura some chicken soup for dinner. She ate it, crawled back into bed, and wanted to start working on a project with me. And then she suddenly threw up again. Exhausted, she lay back and went to sleep.
For me, the swings are probably the most aggravating part of this journey. If I had written this blog entry yesterday as I had intended to do, it would have been completely different and it’s very possible that tomorrow will surprise me. Our emotions seem to be so precariously balanced that pulses of fortune or misfortune throw us wide to the side.
Making the right decisions is challenging. For example, the neurologist suggested that Laura get a swallow test to determine the specific problems she’s having. She was all for it after the neurology appointment, but today all she said was, “can’t a girl change her mind?” There are several other similar decisions to make now, but we don’t know what to do because we both know that there’s a big picture decision that needs to guide the little ones. We need to settle on the right attitude about her cancer, her treatment, and her life. The neurologist noticed that her two pupils were dilated differently, which he thought might be indicative of hydrocephalus. He requested that Laura get another CT scan of her brain. Should she? Probably, because a relatively simple shunt adjustment could reduce or eliminate the hydrocephalus — if that’s the problem. Maybe her vomiting over the last two days is a related complication. Or maybe not. Maybe the CT scan would show new tumors. Then what? Would she undergo any different kind of treatment? And then there’s her legs, which I’ve mentioned are starting to deteriorate. Twice she’s collapsed while climbing stairs and she’s worried that she soon won’t be able to walk again. Should we ask for a spine MRI? If new tumors are found at the base of her spine, would she do anything? Is she able to take daily trips to the hospital for radiation? Does she want to take the trips and could she handle the additional fatigue from the radiation? Would radiation be likely to work and even if it did, would she be well enough that it mattered by the time the treatment was over? In order to make the first move, it seems like we have to consider choices that are several decision steps down the road. And that all comes back to the big question about her overall attitude about how she wants to be managing her cancer and her life.
If we knew how long she will live then many decisions come into clearer focus. But nobody knows what her cancer will do. We could get more scans and other tests to see if there are any signs of progression anywhere in her body. If there were new findings, that would color our thoughts, but if there were no new findings then we wouldn’t be any better off since her nervous system mets have always been camera shy.
Another issue that came up with her nurse today was how best to manage eating. If her vomiting continues, then maybe it can be arrested by increasing her steroid dosage or adjusting her shunt. But if not, should she consider what’s called total parenteral nutrition? That’s where she gets fed intravenously. Currently Laura is slowly losing weight. With TPN she’d maintain weight and nutrition. In addition, she wouldn’t be vomiting because there would be nothing in her gut. The upside and the downside is obvious: no eating. Also, there would be additional discomfort with multiple IVs to support pain medicine and food separately, plus some risks of complications. But that’s probably getting way ahead of ourselves. Too many what ifs.
For now I’m just hoping that she’ll make her trip next week.

“Translational research” is the term used to describe the application of basic knowledge about cancer (basic research) into practical use for patients (the “clinic”). Earlier in the summer I started to write a post about why this is so difficult along with various misconceptions about breast cancer. I don’t need to finish writing most of that piece because there’s an excellent article in Newsweek on the history of cancer research, its impact on patients, and current trends.

…”There was nothing coming out of the basic science that could help” patients. In the high-powered labs funded by the war on cancer, molecular biologists thought they could change that. By discovering how genetic and other changes let cancer cells multiply like frisky rabbits, they reasoned, they could find ways to stop the revved-up replication at its source. That promised to be more effective, and easier on healthy cells than chemotherapy drugs, which also kill normal dividing cells, notably in the gut, bone marrow, mouth and hair follicles… In the 1970s and 1980s they discovered human genes that, when mutated, trigger or promote cancer, as well as tumor suppressor genes that, when healthy, do as their name implies but when damaged release the brakes on pathways leading to cancer.
It made for a lot of elegant science and important research papers. But it “all seemed to have little or no impact on the methods used by clinicians to diagnose and treat cancers,” wrote Harold Varmus, former director of NCI. Basic-science studies of the mechanisms leading to cancer and efforts to control cancer, he observed, “often seemed to inhabit separate worlds.” Indeed, it is possible (and common) for cancer researchers to achieve extraordinary acclaim and success, measured by grants, awards, professorships and papers in leading journals, without ever helping a single patient gain a single extra day of life. There is no pressure within science to make that happen. It is no coincidence that the ratio of useful therapy per basic discovery is abysmal. For other diseases, about 20 percent of new compounds arising from basic biological discoveries are eventually approved as new drugs by the FDA. For cancer, only 8 percent are.

There’s a lot more in the article, too. Only things missing that I think might be helpful are breast cancer specific information and misconceptions like some basics about breast cancer staging and differences related to prognosis and treatment depending on stage and other characteristics of an individual’s cancer. I still might write a little more on this some day.
(Nothing new about Laura recently.)

Yesterday afternoon the four of us left for Irene’s in Brookline. We enjoyed a Venezuelan homestyle dinner and then this morning awoke to a gorgeous day for a walk. The crowds at UMass Boston were huge and the weather was perfect. Macey, Mary Beth, Tom, Kelly, Ben, Jonathan, John, and Ruby all traveled from Northampton to meet us there. Irene’s daughter and friend joined us as did Eileen and Norm Shacochis, my brother-in-law’s parents who live nearby.
We meandered along near the rear of the pack, clocking in at something close to two hours. Near the end, Laura decided to walk herself and she completed the last 2/10ths of a mile with cane and me. The kids had a terrific time — nothing but positive feelings from the experience — something that I hope to recall next year. Thanks to everyone for joining us and supporting the Komen fund!

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Just after Laura finished the course and sat down she got sick again, which was a pretty awful let down. We don’t know if it was coincidental, somehow associated with the release after achieving a goal, or (my current theory) motion-related. Similar to the the beginning of the year, Laura has been feeling nauseated and/or throwing up recently when she gets moving on our windy country roads in the car. It wouldn’t surprise me if her balance was thrown off after riding in a wheelchair for a couple hours and then stopping, too. In any case, we cut the day a little short and headed back to Ashfield.
Back home Laura rested. Lily and I found that our pear tree was so heavily laden with fruit that last night’s storm ripped off its top, so she and I collected some fruit a little early from the fallen limbs. In the process we found a few of our apples are already ripe, so I think I better buy some mason jars soon.
Before I put Laura to sleep — that relaxation stuff is still working! — Laura talked about how scared she is right now. And I am, too. The trip to Boston forced her to do much more than when she is at home: moving around in unfamiliar places, talking with strangers, and fully grasping what is going on. At dinner last night, Laura kept interjecting non-sequiturs into the conversation and it really caught me off guard. And when it happens and she realizes that she’s not quite tuned in, then it really makes her anxious. She can get very emotional — nervous, edgy, and upset with herself. Just before the race started this morning she got a little hysterical because she didn’t understand what was happening. I can’t imagine anything more frightening than realizing that you’re losing your mind.

Today I spent alot of time thinking about Laura and her entourage at the Komen for the Cure race/walk. I personally have been greatly touched by the generous contributions made in Laura’s name by friends and family. But I still find myself asking “what else can I do”? Well, I’ve prayed (and hoped), visited, hopefully provided comfort, and most importantly given my love to Laura.
Recently, I found another way to honor Laura, if not “help” her directly. I am participating in Breast Cancer research as a research study participant. I am determined to be a part of the solution, to help find a cure by providing research scientists with information about myself, as well as some blood, sweat and tears (actually, blood, house dust, and nail clippings).
Now, I would like to ecourage you all to give some thought to participating in research. I would also encourage you to discuss your decision with your family and loved ones; I think positive support is an important part of this process. Participation in research can take many forms. In my case, I am providing data and biological material for study. With the exception of having my blood drawn, it was fairly non-invasisve.
My first research study is called “The Sister Study”. The Sister Study is a national long-term study of women aged 35-74 whose sister have (or had) breast cancer. They are also particularly interested in studying women who are ethnic minorities.
The next study I anticipate participating in is launching in 23 days and is called the “Love/Avon Army of Women”. Their goal is to recruit 1 million women for this study. As some of you know, I am an Avon representative, however, that’s not why I’m going to participate in this study. I’m going to participate because the express purpose of this study is to find out how to STOP cancer before it starts. Who wouldn’t want to support that goal?!?
Lastly, I would encourage you all to take a look at the latest issue of TIME Magazine. There is an interesting article called “He Won His Battle With Cancer” featuring Lance Armstrong, among others lately in the headlines.
I’ll just wrap up by telling you all that just by keeping yourselves in the loop through this blog and keeping Laura and her crew in your thoughts and prayers, you’ve helped to give me strength as well. From the bottom of my heart, Thank You All!

Laura is doing so much better today compared to a few days ago. Still fatigued, yes. But up and dressed and walking around the house, often cavalierly without a walker. She read stories to the girls this afternoon for the first time in weeks. I had a call from hospice this morning asking whether a home health aid should start coming every day and Laura said that once a week would be better! If you’re bedridden then some daily physical care is important, but today Laura was taking care of herself and she expects to keep it that way.
Considering that she is taking essentially no medicine of consequence except for morphine and a steroid, I attribute this big swing over the last week entirely to the change to the patch and then return to morphine. I’m very glad that her condition seems to be improved and I’m hopeful that it will stay that way for a while. There are new minor signs of advancing CSF mets. Laura has been a little nauseated off and on recently and she is having a little more trouble standing up — similar to how she felt at the onset of her troubles with bulky tumor at the base of her spine in May. Unfortunately, it’s a real possibility that this same problem could return.
But those are worries for another day. As for this weekend, the race is on! The weather forecast currently predicts that Hanna will be moving through Boston just before the event and won’t be a problem. We’ll be heading for Boston tomorrow afternoon. To those of you who are joining us, we plan to arrive — like everyone else! — at check-in around 8am on Sunday. We’ll be hanging out somewhere near the check-in, I think, but may head over to the “Survivor Parade of Pink Ceremony” at 8:15. My mobile phone number is 413-522-4397. The event starts at the Clark Athletic Center at UMass Boston. See you there!
Hoo boy! Did you see that we’ve raised over $2000 in the last 4 days? Thanks to everyone who contributed. We’ve been a little cynical about the fundraising aspect in the past. Cancer research, after all, has its own national institute of health and is one of the biggest funding recipients from the federal government. But although the “Komen for the Cure” fund focuses on a cure for breast cancer, the Massachusetts branch also invests in health care access and education for state residents. I think that supporting these interests is a very worthy goal. So good job all!

After yesterday’s post about treatment decisions, how ironic that I got a call this afternoon urging me to have Laura drink alkaline water. Hadn’t I heard that cancer cells don’t survive in an alkaline environment?
I’ve got a bad sinus cold right now and my girls were tugging and whining. I muttered something about it not being worth our time. Cough. Sniffle. Thanks for your concern. Bye. Sigh.
I vaguely remember doing my due diligence on this topic last year. For the record, the theory is baseless (pun intended). For more information on the body’s acid-base balance and its association with cancer, see

• a response from a Dana Farber nutritionist
• The QuackWatch website
• “Diet and pH balance in cancer treatment”
• or this insolent smack down.

When Laura and I were first married we thought it would be fun to read to each other aloud in bed. The only problem was that I invariably fell asleep immediately. Since then it’s always been a running joke about Laura’s hypnotic personality.
The truth is that I fall asleep most quickly when I’m reading, not listening. Indeed, reading is something I have never done well — and regret it. When I read, my mind has to deliberately concentrate on a single thing and all the rest is pushed aside. By the time I settle into a good read my mind is so relaxed that I immediately fall asleep.
This idea of single-mindedness is at the heart of pretty much every meditative and relaxation practice. A very common preface to meditation is to slowly work your way from the top to the bottom of your body becoming aware of every part of your body and consciously relaxing each part.
Laura has the problem that she is often exhausted but can’t fall asleep. So I told her I would lead a relaxation practice. Now for the third night in a row she’s been asleep before I’ve reached the chin. Yesterday and today I asked her what she thought of the relaxation technique from the night before and both times she didn’t remember a thing. Each time I spent a good ten minutes talking out loud working my way down to my toes and I was almost expecting Laura to make some wisecrack just as I finished. But so far not a sound.
An old friend of mine from 15 years ago is no longer a software engineer and instead leads this kind of relaxation practice as a part of her work in yoga. She has (long) recordings on her website. So the next time you can’t sleep, listen to Sue. (Or me, if I’m nearby. Apparently I’ll put you to sleep, too.)

Ha! I bet you thought I was going to write yet another morose post about cancer. No, no. The monthly Ashfield News arrived recently. It’s quiet in this fair town. Obviously so. Our police log is “edited for space” and yet the following entry survived:

Wednesday August 13 5pm: Report of a low-hanging large tree limb on Hawley Road. Same was located but found to be too high above for any department to remove; awaiting nature to take its course.

Hmm. Was it really low-hanging if it was too high?

At this point I don’t know if we’ll actually make it to Boston for the race or not, but tonight I’m feeling a little more optimistic. Yesterday (Tuesday) Laura’s nurse came to the house and we agreed on several changes.
First, we switched over to hospice. Because the visiting nurse association and hospice are the same company, the transition was instant and easy. In fact, her current nurse will stay the same. There are a few advantages to switching. Among them, trained hospice volunteers can help with simple needs around the house. The main need right now is to have a monitor in the house; I shouldn’t leave Laura alone because she is prone to fall. Neighbors and friends are helping out here, too. (If you live nearby and want to help with this, send me an email.)
In addition to extra helping hands, hospice is, of course, prepared for death. I had been afraid to ask what I was supposed to do if Laura passed away. Do I call 911 and begin CPR? Or must I call anyone? What should I do? How much time do I have? I have now learned that it’s my choice; in particular, there’s no legal requirement that I call 911. Considering that I probably wouldn’t want a bunch of flashing lights and paramedics rushing through my house the best action I take is to simply call hospice. They immediately come to the house and take care of all the rest. I’m so relieved to finally know this.
I was also given a small booklet about what to expect and told that the hospice nurses will help me know how much time Laura has. I think this question has been eating away at me for weeks. Nobody seemed to want to make any predictions and I have been afraid to ask. Now I feel a little more relieved that nothing is probably imminent.
The second change was that Laura stopped using the pain patch and started on a morphine pump today. The morphine pump has a button that allows Laura to temporarily increase dosage to almost instantly deal with additional pain. I’m optimistic that this freedom to control her pain quickly will have the additional benefit of increasing her activity. She usually has little to no pain when she’s lying down, but her neck and back pain strike when she tries to rise. Hopefully the pump will give her the confidence to get out of bed more often.
Morphine seems to agree with her much more and today was a better day. She still slept or rested in bed almost all day, but her pain was much less and we had conversations, she ate on her own, came down for a requested potpie dinner, and even had a video call with Heather and her family.
By comparison, yesterday was more of the same tough scene since Sunday. She wasn’t very coherent or aware. I fed her. And she had the first headache and headache-induced vomiting since she left the hospital a couple weeks ago. It was a sad ebb. Laura was struggling to throw up while Naomi bounced on our bed asking to “look at Mommy’s spit-up” and Lily stood in the doorway sucking her thumb, holding her purple blanket, and crying.
But that was yesterday. It seems that the patch just didn’t agree with her. In addition, I found one of her steroid pills this morning that she hadn’t taken, which hopefully explains why she threw up last night, but was fine today.
A hospital adjustable bed also arrived today. It fits right next to our bed and has already made it easier for Laura to eat and get in and out of bed. The girls love “taking a ride in it”.
So Laura seems to be better, although still pretty wiped out. I think there’s a better chance that we will make it to Boston this weekend. With Laura hopefully in a “better normal” than before, with the kids now in school (Naomi in preschool and Lily in kindergarten), and with no appointments on our calendar, there seems to be an opportunity for some peace in the near future.

We got a call today. The person was upset to here that Laura was not fairing well and wanted to talk about whether everything that could be done to cure her had been tried or considered. I want to say definitively yes. But the truth about dying from cancer is more nuanced. Certainly we want to be absolutely certain that Laura is suffering from cancer progression and not from some other cause — another undiagnosed condition, a complication of treatment, or whatever. To that point there is no doubt in my mind. But has she done everything possible to reverse her disease or to stave off its progression? No, not exactly.
I know I’ve trod through this territory several times already, but it’s one of those nagging, frightening thoughts that there might be something out there — some rock unturned — that would break this case wide open. Nobody wants to be guilty of death. And everyone would love for some sudden fix to a seemingly intractable problem. Magic pill or magic herb or magic touch or whatever it is, we can’t stop searching. We hear about people who are “fighters” and “beat” cancer. The myth is pervasive and understandable because everyone wants to feel empowered. We read about Lance Armstrong who didn’t give up, but most people don’t realize that his non-metastatic testicular cancer is one of the most successfully treated types of cancers. The truth is cancer has no sympathy and can be relentless. But even in the face of foreboding odds, we want to do whatever we can. Right?
What makes this complicated is the reality that treatments almost all have benefits and disadvantages — some well known and others very uncertain. In Computer Science there is a subfield called “Decision-making under uncertainty” — which is pretty much just what it sounds like. Researchers try to come up with the most effective technique for making a series of decisions towards achieving some goal (e.g. trying to guide a robot across terrain or optimally investing in a hedge fund) within a context that is not fully known (e.g. the robot can’t see what other obstacles might be on the other side of the hill and the automatic investor doesn’t know whether the hurricane will strike a major population center… and how that uncertain weather might have a cascading effect in numerous uncertain ways on the financial markets).
We can frame cancer treatment similarly: the goal perhaps is to maximize survival within the complex context of thousands of unknowns. Many of these unknowns are literally unknowable at this time in human history. Things like “does Laura have micro-tumors in her brain?” or “does her individual variety of breast cancer respond to a particular chemotherapy drug?” (Why are they unknowable? Because we can’t see such micro-tumors with current, non-invasive imaging technology. And nobody knows enough about the biology of breast cancer, yet, to know precisely how Laura’s particular cancer cells might react in the presence of some small pharmaceutical compound — even if the DNA from some of Laura’s cancer cells were sequenced. Oh, and by the way, cancer DNA can vary dramatically even within one person from cell to cell!) Even so, it is theoretically possible to put numbers on most everything — say a probability on the presence of micro-tumors and another number describing our confidence in the probability! Computer Scientists do this sort of thing all the time.
But that doesn’t fully solve the problem because our goal is wrong. The goal is not just maximizing survival, it is staying alive while maintaining a good quality of life. If you’re not alive, then your quality of life is not so good. So really we just want to maximize quality of life. OK. We could still create some kind of new goal that was some numeric measure of quality of life that cleverly combined different indicators of the good life. Biostatisticians do this sort of thing all the time! And what about all that uncertainty? We could try to reduce it down as much as possible by subjecting the patient to countless tests over time to look for indicators and track changes. We read about how Ted Kennedy invited a multi-disciplinary team from around the country to recommend appropriate treatments. Think how much better our computer program would be if I had that same access to expertise?
And so continues the thinking from the ivory tower. Of course this is all doomed from the start because what’s fundamentally missing from such an analytic exercise is the recognition of individual, distinctive, emotional human nature. Even if there were a computer program that could take in all the facts and spit out recommended actions, even if we could formulate the major interactions, parameterize the system, and estimate to the best of our ability all the uncertainties therein, it would still be unsatisfactory. To one person, a predicted quality of life score of 5.6 (I’m making this up!) for another 6 weeks is just the long shot she was hoping for. To another, it’s a miserable death march. (OK, OK, I know someone out there is thinking about how a personality test could determine a patient’s attitude about quality of life in order to properly calibrate that score. This is the mind of the modeler!) To one person, a commitment to not stop fighting is what keeps her motivated to get out of bed. To another, insufferable fighting is what drives her to bed.
This is not to say that reason should play no role in end of life decision making. Most of us probably want to be sure that all treatment options are known and considered, but there is no precise threshold for acceptance or rejection. Such decisions are intensely personal, idiosyncratic, and impossible to fully quantify.
Now I’ve been very abstract up until now and will try to bring it back down to reality. Laura could try another chemotherapy. There are actually numerous very long shot options. Laura could try acupuncture to relieve her symptoms. She could binge on anti-oxidants. She could flush out her body in the desert. She could pray for a miracle. She could try another round of radiation. She could attend a healing service. She could fly to the best cancer center in the country (it’s in Texas) for a second or third opinion. She could listen to recordings of subliminal healing meditations. She could get her shunt checked again. She could get another set of PET/CT scans. She could say, “enough”. She hasn’t. But she could. And that’s OK.