Loose Strife

On weeds and wants and ways and whimsy

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But maybe

Sat, Mar 29th, 2008 1:47am by dkulp

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.

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5 responses so far ↓

  • 1 Jim Brehm // Mar 29, 2008 at 7:05 am

    Miss you thanks alot and with that we are out the door.

  • 2 Irene Bosch // Mar 29, 2008 at 11:04 am

    Kauai
    I have been looking for your letters all these days as I was so interested to know how Laura was feeling.
    I have never been in Kauai, but by the narrative, it looks amazing.
    I have to say that the opportunity to see those pictures is such unique, I look forward when you post them.
    For some strange reason, the ocean is very unique to many of us, in that it inspire us, it shows its beauty, its power, its mysteries, in a abstract way, almost as if we have fallen in love with the ocean.
    It maybe is that the ocean reflects the sky’s colors, and it mirrors the Universe, maybe it evokes our ancestral lives, were everything was swimming in an ocean of microscopic creatures and molecules. Our bones are ancestral ocean water, calcified. As if we knew that were were made from the ocean.
    Okeanides three thousand gooddess, Poseidon and Amphitrite, the two Gods of the ocean, and Aphrodite, who was born from the sea foam depict the powers of the ocean in a way that is mysterious and biological.
    It sounds as you had a wonderful trip and I am so happy for you.
    You also raise such important questions about life in your letters and I thank you, since these questions are important for all of us to think about them and meditate.
    Maybe to work the soil in the Spring is the best way to meditate too. An example of how it is done, is explained by Robert Pirsig, in the Book “The Zen and the Art of Motorcycle Maintenance”, despite being at a shelf of the “Sports” section of a Bookstore, it has nothing to do with motorcycle riding or maintenance, but more with life. “Unless your are fond of hollering you don’t make great conversations on a running cycle. Instead you spend your time being aware of things and mediating on them. On sights and sounds, on the mood of the weather and things remembered, on the machine and the countryside your are in, thinking about things at great leisure and length without being hurried and without feeling your’re losing time.”
    Working the soil, planting, transpiring, seeing the hours past, bring the unique opportunity to smell the grass, the dirt, to ear the birds.
    The way you write to all of us makes us think and meditate. Makes us think about Laura to give her strength and give it to us, too.
    Thanks.
    Irene.

  • 3 David // Mar 30, 2008 at 8:23 pm

    A quick clarification. Some are worried that Laura has suddenly badly deteriorated. Not the case.
    Laura is still doing very well. Some back pain, but not all of the time. Annoyed with her broken leg, but still getting around fine. She hasn’t been as tired as when we got home. Today she drove the kids to a play date! She’s OK, just not seemingly “in remission” — that was my point.

  • 4 Tom Duesterhaus // Mar 31, 2008 at 7:33 am

    David,
    Thanks for the update. It was great seeing you guys – and I hope to see you at some point this summer.
    Peace,
    Tom

  • 5 Joyce Augie Taormina // Apr 9, 2008 at 10:37 am

    Stopped by the Coleman house….saw all the Coleman clan, but you had not arrived from David’s family. So sorry to have missed you and your family. Wewent to Pennsylvania to be with Chris,Kim and the boys for Easter! Your brother had posted slides from our sojurn in the Azores so many years ago. Enjoyed the visit with everybody….Missed you! Love Joyce Taormina