Loose Strife

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.