Loose Strife

Natalie, Joe, and the four of us left on a Wednesday for Arkansas. First stop was, unexpectedly, Northern Virginia. Our flight was delayed departing from Connecticut because of reported weather troubles at our layover airport, Dulles, outside of D.C. It was a good thing we weren’t flying: tornadoes were spotted nearby and the control tower was evacuated at one point. But when we finally did arrive at Dulles we missed our connecting flight by about ten minutes. (Later I learned that the plane sat on the runway and didn’t actually take off for another 5 hours!) There were no other flights for 24 hours.
Lucky for us we could stay with family — Laura, the girls, and I went to my parents’ for the night while Natalie and Joe slept at Elena’s. The bad news was that I hadn’t thought to put Laura’s medications in our carry-ons. Instead, they were in checked luggage and there was no way to get our bags. I tried. The fact that the vast majority of luggage actually makes it to its final destination is really amazing. In a situation like ours with bad weather, the airline’s automated bag scanning and tracking had no record of any of our bags’ stops, yet ultimately our bags beat us to Arkansas. Via what route, nobody knows. But they were there when we arrived.
At the time, though, we worried they were lost or might be further delayed, since nobody knew where they were. Laura had cut her dosages in half to last through the next day, but somehow I had to arrange for new medicine for Laura in case our bags were lost.
Obtaining narcotics and chemo drugs was unlikely to be simple. The morphine that Laura takes for back and leg pain is a controlled substance and a prescription must be physically delivered to a pharmacy. The chemotherapy drug Xeloda is about $400 without insurance, but our insurance doesn’t allow refills for the same drug until the dosage schedule for the current pills is completed. But solving these problems turned out to be easier than I thought — mainly because cancer patients usually have assigned case managers who, theoretically, help deal with the health care bureaucracy. In our case, it worked.
I called her case manager and she quickly pulled some strings so that insurance would cover the drug costs. And I called her oncologist’s office and they sent an overnight Fedex prescription to a Little Rock pharmacy. Problem solved!
Coming back was just as bad. When we arrived at the Little Rock airport in the early evening everything seemed to be running fine. Our bags were checked and we boarded the plane to Charlotte, NC. The plan taxied towards the runway and then stopped. We were told that there would be a 15 minute “ground stop” due to bad weather in Charlotte. Soon we heard that the ground stop was lifted, but our flight could not take off from Little Rock for another 40 minutes. Then we were told that ten people would miss their connection in Charlotte and the plane was returning to the gate to let these passengers off. Back parked at the gate the US Air agent rattled off at least a dozen destination over the plane’s intercom; anyone heading to these places had to get off. Our destination, Hartford, was not mentioned. But then the gate agent said that everyone should just get off the plane and all the passengers would be rebooked!
Now back in the terminal, all of us stood in a long line to be rebooked by a single agent. And then they announced suddenly that anyone who wanted to go to Charlotte should get back on the plane. There was panic as people tried to determine what was the right gamble. What about connection availability tomorrow?
I figured it was better to stay in Little Rock where we had family than in Charlotte. (The airline won’t pay for overnight accommodation because the problem was originally a 15 minute weather delay.) To try to get seats as quickly as possible, I called an airline agent to rebook on my cell phone. The agent quickly switched us to the first flight out of Little Rock and told us to pick up our boarding passes in the morning. We spent the night with Laura’s cousin in North Little Rock.
The next morning I called US Air to make sure we were ticketed correctly and was told we were. Karen dropped us off at the airport and said, “if you have any more troubles, you have my number.” And I said, exhausted and annoyed by our second overnight delay, “there will be no other problems!”
When I got to the ticket counter, the agent told me that a mistake had been made in our reservations and we didn’t have seats. The flight was now (surprise!) overbooked and we would have to take another flight.
I was furious and demanded that they seat us. “No, I won’t take the evening flight and get stuck in the same summer afternoon storm delays. We’ve already been delayed a day. I have two small children and my wife sitting over there in the wheelchair has cancer and she will run out of medicine if we don’t get home today. I’m not joking!”
There. I really did it. I played the cancer card. I felt like a jerk. But I was also angry and wanted to go home. It was true that Laura’s prescriptions would have run out if we stayed another day, but is it really right to make some other innocent passengers suffer because of me? The manager came out and said that we would get on the plane. They would bump the last people to check in. She quickly tried to finish checking in the people standing in line behind us so they could close the counter and, in her words, the late-comers would be “SOL”. When we got to the gate, they still had to bump two people and give them flight vouchers. But we got on the plane.
I’ve always felt contempt for assholes who make a loud scene for special treatment. Now, I hate to admit it, sometimes being loud does make a difference. And it sure helps to have a cancer card in your pocket to play.

We just got home from Arkansas earlier this evening. Laura’s condition is pretty much unchanged — which means outstanding. We saw just about everyone and had a great visit. The girls had a ball. Joe and Natalie have now left for Virginia and Laura and I are settling in for some quiet time at home until the visitors start arriving this weekend. (Everyone starts coming out of the woodwork when you start talking about getting your affairs in order!)
I promise to post lots of pictures later with more about everyone we visited with. In the mean time I’ll just say that we visited Coleman relatives in North Little Rock, Ozark, and Holly Grove. Still others came to see us from far away places like Mississippi. We ate lots of barbeque and soul food. Visiting and food are inseparable. The whole trip was very emotional for Laura and I know she’s so pleased that we got down there to see everyone.
Laura got a little sick while there and she rested quite a bit. We suspect that her current chemo dose is a little high. She’s on a one week on / one week off schedule and a day after she completed her week she was starting to perk up.
While Laura rested or visited, the girls and I had a little bit of fun here and there. We went fishing, boating, and swimming. They played with cousins and received lots of spoiling. I road in a combine.
The trips to and from were enough to put you off plane travel. We were delayed a day due to bad weather both coming and going, but luckily that meant that we spent a day visiting family in Virginia during the first extended layover and family in Little Rock on the way back home. And this morning, leaving Little Rock, we almost didn’t get on our rebooked flight.
Lots of stories that I hope to get to some time. But it’s hard to justify delving into any one without the others and I’m ready to go to bed. Just wanted to let folks know that we’re back home, we loved visiting everyone in Arkansas, and Laura’s still doing well.

When we decided to go on our big Hawaii, California, Virginia trip soon after Laura’s CSF mets diagnosis and brain surgery it seemed like a big risk. But Laura’s remission was perfectly timed and we had a great trip.
When Laura got out of the hospital and went to see her neuro-oncologist two weeks ago it seemed like her health was on the decline. We heard an honest and sobering assessment and left with a renewed sense that Laura needed to “get her things in order” and make sure that she got to travel to see the rest of her family before she wasn’t able to. At first we were planning to leave as soon as possible, but we decided to wait. That delay seemed risky at first since we worried that her mobility might get even worse in the coming weeks. Instead, she has responded to radiation to her spine and walks better every day. She carries a cane when she goes out and still is slow on stairs, but otherwise the cane sits alone!
So Laura is doing very well and it looks like she is in great shape to travel tomorrow. She and I went to Northampton today for appointments and then strolled around Main Street for a little while. We picked up an 8×10 print of our wedding photo. After 14 years we finally would have something to hang on the wall! But we got the wrong negative printed. I look like a deer caught in the headlights, but Laura looks terrific! One of these days we’ll get it done and done right. Anyway, we bought some ice cream at Harrell’s. We did some window shopping and took our picture in a photo booth.
(For all you photo addicts, here’s the “wrong” one (close-up), the “right” one, and another wedding photo, just for fun. I joked to Laura that we should photoshop the first and second together.)

Anyway, back to the present. Laura had a neck MRI yesterday. We met with her oncologist this morning and she told us that the MRI showed no nerve problems to explain Laura’s numb hand. Her legs are a little numb, too. We were told that it might be the CSF mets, but Laura is doing so well, relatively speaking, that the oncologist didn’t want “to sweat the small stuff.” And if it is CSF mets, which seems likely to me, then she would be getting the same treatment anyway, according to her onc. So we’re not too worked up about it, yet, although I have a call in to her neuro-oncologist to give him an update and make sure that he doesn’t have a different opinion.
Laura received some more chemo infusions today — Avastin and also a drug called Zometa, which she receives regularly for her bone mets. (You might have seen Zometa mentioned in the news in the last few days because of some new hopeful findings for its use in early stage breast cancer. Those latest results don’t apply to Laura. But even so, the results were actually statistically insignificant due to the small sample size. Some day I’ll write more on how utterly complicated and difficult the drug development process is and how hard it is to translate the glacial pace of research into understandable news for non-scientists. It’s a mess.)
Laura also finally got around to giving blood for a genetic screen that detects DNA mutations associated with susceptibility to breast cancer. It doesn’t affect her treatment, but is important information for our daughters, Laura’s sisters, and her mom. As part of the paperwork, the nurse asked for any history of cancer in Laura’s family. I opened my notebook. “I’ve got it all written down,” I said. I started to list the 4 aunts and her mom, all who had early stage (so-called “in situ”) breast cancer. I didn’t even get to the other cancers in the family. “Stop. That’s enough,” the nurse says. “They only gave me three lines.”
My long page of data seems compelling, but almost all of the other cases in the family occurred at older ages, and I’ve read that such occurrences increase Laura’s statistical chance of having breast cancer mutations by only about a percentage point or two. So we sort of expect her to test positive because she’s young and there’s a lot of cancer in the family, but we won’t be too surprised if she tests negative. Cancer is complicated. Really complicated. After all, I wouldn’t be writing such an upbeat post tonight if statistics were personal.

Well, it’s been a long dry period in the local police blotter until this month’s issue arrived in my mailbox today.
First, more excitement on infamous Bug Hill Road on Wednesday, May 7, 4:40pm: Report of a medical emergency on Bug Hill Road; child with lego stuck inside his nose.
The next day, Thursday, May 8, at an unspecified location, but probably Bug Hill Road (where else?), 6:45pm: Report of an annoying smoke alarm which was persistently sounding in the absence of smoke. Officer responded as well as the Ashfield Fire Chief; cause determined to be the old disposed-of smoke detector in the trash bin. The battery was removed and the alarm subsided.
And last, on Saturday, May 24, 6:15pm: Report of a juvenile locked out of residence; juvenile advised that she had brownies baking in the oven. Officer sent; access was gained in to the residence without incident.
Without incident? That must mean that the brownies were saved!

It’s really dry here right now. The hay should be about twice as tall as it is, but we’ve had no rain — just beautiful, breezy days.
Yesterday we met with Laura’s primary oncologist. The onc admitted that she was surprised that Laura was walking on her own and she was very happy.
There are a couple unresolved issues, but nothing major right now. Laura’s left arm is still numb, so she’ll be getting a neck MRI soon to check for nerve damage. Her left leg is slightly swollen; one of the chemo drugs (Avastin) has a blood clot risk, but yesterday her onc had her get an ultrasound and there was none. Laura’s platelet count is down, so her chemo dose might need to be adjusted next week.
Laura’s been outside directing a perennial bed renewal during the last couple days — usually pointing here and there with her cane from the deck. On Monday evening I was watching her and thinking how amazing it was to see her move around so confidently, so I started to go inside to get the video camera. But just then she was walking down a steep slope and she fell, broke her glasses, and gave herself a black eye! But besides her pride, nothing was hurt.
She’s doing so well that the home nurse visits are reduced for now. Originally a home health aid was to visit a couple times per week to help her bathe, etc.; a nurse was to come and check her vitals and adjust medications, etc.; and a physical therapist was going to come twice per week. But the home health aid and nurse are on hold for now and the PT is done until we get back from our trip.
All for now.

Quick note to say that Laura is getting better by the day. Two days ago I was amazed that she was furniture surfing a few steps every now and then. Yesterday the physical therapist gave her a cane to try. Today she mostly left the cane behind and hobbled on her own — inside and out — up and down stairs. It’s a big surprise and a major improvement. In addition, Laura has now been taking her new chemotherapy drug for five days without any side effects. “Things are good right now,” Laura said to me.
Also, I finally got around to posting photos from our stopover in California in March, week in Virginia at Easter, and April and May pictures from home.

I’m happy to report that Laura started to see some improvement in her leg strength and control starting last Thursday — just after I wrote that nothing had changed! Since then she has continued to noticeably improve her walking and climbing. Ten days ago her legs were too weak to climb stairs and Joe and I had to lift her up each step. She couldn’t control her leg lifting. Now she can pull herself up one step at a time, is able to easily clear each step, and can reach the top without pause. She’s cruising the floors with her walker at a pace, whereas before it was very slow and irregular. She still must walk assisted, but is comfortable enough to move two or three steps without support. She still has to lift her legs with her arms into the bed or car.
This all suggests that the radiation treatments are not just stopping the tumor progression in the base of her spine, but reversing the walking problems. Physical therapy is probably also helping. This is unexpected good news! Not everything is rosy. Laura’s handwriting continues to worsen along with weakening and tremors in her hands, and her left arm is starting to feel numb. But we were expecting that she might become unable to walk at all, so this change in the other direction is hopeful.
Today Laura and I met with her general oncologist who had consulted with her neuro-oncologist last week. Everyone was in agreement for Laura to begin a new combination chemotherapy treatment of two drugs called Xeloda and Avastin, which she started today. Both are usually well tolerated among most patients. Laura takes Xeloda, a pill, every day for a week and then rests a week. Avastin is administered intravenously every two weeks.
As her oncologists have explained, her treatment is now beyond the realm of known treatment regimens and into the realm of intuition and experimentation. Neither drug has yet been shown to work (or not work) for CSF mets through clinical trials, however it is known that Xeloda passes through the blood-brain barrier and there are anecdotal cases in which Xeloda delayed progression of CSF mets. The neuro-oncologist is not aware of anyone using Avastin for CSF mets, but the intuition is that it could starve the cancer of necessary blood supply. Avastin has recently been shown to help patients with glioma — brain tumors like the one found yesterday in Ted Kennedy — so it’s reasonable to believe that it also crosses the blood-brain barrier and could be useful.
As a heads-up to the Arkansas crowd, Laura plans to visit after her second Avastin drip in about two weeks and stay for the weekend of June 7th. I’ll send our travel details through the local grape vine soon.

By last Saturday, Joe and I had planted 40 blueberry bushes with plans for 80 more by next year depending on how these grow. The black flies are swarming, but despite the annoyance I’ve still been having fun outside. Next week I’ll be putting 100 raspberries in a test plot. Lots of mulching to do. Joe has been helping me repair some fence. And I picked up some Guinea keats two weeks ago — just for fun. They’ve molted and doubled in size already — jumping out of their box in the mudroom; I moved them to a coop in the barn this morning.
I’m trying conventional spray management this year on my 3 old apple trees partly for experience and partly to try to figure out why I didn’t get a crop last year. On the organic side, my lower field is dense with rye and vetch, which should continue to build the nutrients in that field. On Friday, some folks from the USDA will be visiting to give me some ideas on drainage and irrigation.
It sounds like a lot of work, but really it’s just small stuff here and there. With Joe and Natalie around, it’s all manageable because there are plenty of adults to watch the kids or help Laura. And Joe is a big help on the bigger jobs.
I was talking with Laura yesterday and it occurred to me that I would have probably gone crazy if we were still living in our house in Northampton — all cooped up in our little yard. Sometimes we both regret that we moved away from a close knit neighborhood and many friends in the Northampton area just when we needed them most. But ironically Laura has become much closer to many friends since we moved away, we’ve made many new connections, and, as I said, I’ve got a piece of land to distract me.
I haven’t written much on this blog lately. Not too much more than the facts. And I haven’t missed it much. I’ve reached a point of acceptance and maybe some numbness to the whole situation. I can remember writing comments on a web site for advanced cancer patients early last fall: Would I ever stop obsessing about Laura’s cancer? Would I be able to return to my normal routine? Be functional in the office? It seemed inconceivable.
But now it takes the extraordinary to get me emotional. All the disease issues — it’s all very matter of fact. Clinical. It’s the small things that set me off now, usually when I’m in the car driving from Boston and I have lots of time to ponder or discuss. When I was driving back from Brigham-Women’s without Laura — after her latest diagnosis of tumors in her lower spine — as she waited to be transported by ambulance back to western Mass, what really got me weepy were the thoughts of the doctors and how much compassion they had for us. I was thinking about the emergency room doctor who asked about our daughters and insisted that missing Naomi’s birthday party was indeed a big deal even if we said it wasn’t. She wrote it on Laura’s chart and every new physician who came in talked about Naomi’s birthday. “No promises, but we’ll try to get you out of here as soon as we can.” And then when Laura’s radiation oncologist back at the hospital in Northampton got word of Laura’s situation, it seemed like she was determined to move heaven and earth to get Laura treated and home as soon as possible.
How could these people care so much about Laura? Just another cancer patient. And it brought me to think about all the other people in our lives who have all shown tremendous love. It’s truly amazing and beautiful and right. And I am very grateful.
Of course Laura didn’t get home for the party, but stayed in the hospital for a week. And the party really wasn’t a very noteworthy event and Naomi didn’t seem to care that her mom was missing. She’s only 3 and the excitement of multiple kids coming over to her house to play was completely consuming and sufficient. But none of that matters…
We had some friends visit on Saturday, which is always nice. We sat out on the deck and ate slices of homemade bread, while the kids ran around the yard. Beautiful tulips with a ragged frill were in bloom that opened spread eagle and looked like exotic, tropical flowers. Natalie picked some bouquets. On Sunday the girls fixed Laura breakfast in bed. We all went to Mass and the priest came to our pew with the host and blessed our family because Laura couldn’t walk up to get communion. When we got home I took a picture of the mothers and daughters. In the afternoon, a very generous friend in town invited all of us, including Laura’s parents, to a charming little tea party.

Before we went to bed Laura told me that she kept thinking about how much she wanted to walk around the yard. Even down the driveway. She wished she could see what vegetables were coming up in the garden (carrots, lettuce, spinach, beets, and peas). What native plants were growing by the edge of the woods and stream (jack-in-the-pulpit and trillium).
But Laura’s legs aren’t getting any better and it seems increasingly unlikely that they will. The hope was that radiation would get rid of the “bulky tumor” in the bottom of her spine where nerves extend to control her legs. That hasn’t happened and our impression is that relief in such cases is usually early in the radiation treatments, but it could yet make a difference. In any case, it’s the only available targeted treatment to help her walk again, so she continues her daily trips to the hospital.
Laura and I drove to Boston yesterday (Tuesday) afternoon to have a face-to-face meeting with her neuro-oncologist at Dana-Farber. Not much hope. He said it was unusual that Laura did so well for almost three months. And he was surprised and saddened that she suddenly experienced a major cancer progression. We talked about how her symptoms seem to hit suddenly with pauses between onsets, but he couldn’t say whether it was likely that similar punctuated progression would occur in the future. He reminded us that most patients decline rapidly and asked whether we had contacted hospice to be prepared (I had). But when we asked for him to prepare us more specifically for what might be ahead, he refused saying that there is a “long list of awful neurological problems that might occur”, but there was no value in delving into the details of such a list when any one symptom was unlikely.
We did revisit the chemotherapy options. Right now Laura isn’t on any chemotherapy. She’s on some hormone therapy, but the neuro-onc told us that hormone therapies are not considered useful in the central nervous system. Since Laura’s systemic cancer is stable and she wasn’t experiencing any neurological problems until recently, she was very resistant to taking on new treatments with side effects that would have possibly reduced her quality of life. A month ago, when Laura could still walk but her legs started to ache, her oncologist urged Laura to begin an oral chemotherapy called Xeloda. At the time, Laura said no until a more specific diagnosis could be made. So there were scans with negative results, rapid decline, then more scans with cancer findings, radiation and here we are. But Xeloda is still an option.
Her neuro-oncologist also raised the possibility of including a new drug, Avastin, that targets tumor growth — although he wasn’t aware of anyone using the drug for cancer in the nervous system, yet, and it’s unknown whether it would work. He promised to discuss the situation with his colleagues and also with Laura’s general oncologist.
In the car on the way home from Boston Laura said that based on the meeting she wanted to get to Arkansas to visit family there as soon as possible. We’ll try to go after her radiation treatments are completed at the end of next week.
“I’ve been wasting my time,” Laura complained as we drove down the Mass Pike. Then we talked about planning funeral and memorial services. I told her that if no further thoughts were expended that these events would work themselves out fine without her. But she wants to worry about it; we made a long list of decisions that she wants to make. Lots of odd issues came up. Music? When? Where? Is the burial before or after a service? Who would come? If there were a reception, who would take care of food? Who would officiate which events? Should we go visit the funeral homes to choose the “best” one? Etc. I set up a meeting with Laura’s priest for next week and I’m sure a lot of this we will be able to answer pretty readily after that.
But other macabre questions are more complicated. Laura prefers cremation, but we suspect that the girls might be able to better understand death if they knew that Laura’s body was in the coffin before them, whereas they might be disturbed or confused by cremation. We don’t know and we’re looking for more information on children, grieving, and death. I do know that this experience for the kids will be a long and heavy burden.
At different times in the last few days Lily has asked both of us why God created mosquitos. She suggested that they should have been “invented” in the winter time when we wouldn’t be outside for them to bite us. What thoughts will she have if her mother dies from cancer and she thinks about the grace we sing at the table? “Oh the Lord is good to me. And so I thank the Lord. For giving me the things I need. The sun and the rain and the apple seed.” And takes away.

Laura came home early this afternoon (Friday). I’m very glad she’s home!
She and I both agree that her walking is worse than when we left for the Boston emergency room this time last Friday. Her physicians at the hospital were all expecting (or hoping?) to see some improvement during her stay this week. But she can’t do stairs anymore and she got up to the bedroom this evening by scooting backwards with a lot of effort. It raises a lot of questions about what to do…
A visiting nurse will come tomorrow and PT/OT will begin at the house on Monday.

Laura is still in the hospital, but might come home tomorrow (Thursday) afternoon. It’s a little surprising that Laura is not chomping at the bit to leave the hospital. She’s got excellent care and is getting good sleep. She’s had the chance to experiment with pain medicine and found what seems to be working well. She claims to be eating more and better because at home she says it’s hard to get motivated to eat. She has had lots of visitors throughout the days. She doesn’t have to take a daily drive to her radiation treatments. She’s receiving daily occupational and physical therapy (OT & PT). And she’s got a “hospitalist” (like an attending physician) and case worker who are tracking her condition.
She and I talked with the hospitalist this afternoon and we learned that there’s no strong reason she has to stay in the hospital, but that the staff dealing with her are concerned about her safety at home and are hoping that she’ll be more capable to get around tomorrow or Friday since she will have had 5 or 6 rounds of radiation and multiple OT sessions, which are aimed at improving “ADL” — activities of daily living.
After she is discharged a visiting nurse will be coming to the house on a regular basis to check on her, do in-house OT and PT, and act as a “health aid”, if needed, which means helping Laura for a few hours doing normal daily activities like bathing. With Laura’s parents here right now, there are plenty of adults to help out, so the last part isn’t critical. But when her parents leave, we’ll need someone to come in to be with her just so I can get the kids to school, get groceries, etc. Her doctors don’t want her left alone.
The hospitalist will get the ball rolling tomorrow morning for her discharge, and if all the staff and Laura agree, then she’ll come home in the afternoon. But nobody is in a rush.