Loose Strife

I was surprised how impressive the lunar eclipse was on Wednesday night. We had a cloudless sky full of stars in Ashfield. A friend of ours teaches science to high schoolers in Manhattan and she asked me to take some pictures. It was a cold 5 degrees out and the weather caused lots of troubles with the camera, but I managed to get a few good shots with a telephoto lens. Here are two. The first is a partial eclipse of the earth over the moon. The second is a full eclipse. The moon appears orange even to the naked eye because refracted light bends around the earth, passes through lots of atmosphere turning red like a sunset, and lights up the dark moon.

I’m not much of a stargazer, but I will say that this pales in comparison to a total solar eclipse, which I was fortunate enough to see several years ago in Germany. There’s one in the United States in 2017 and it sounds crazy, but I urge everyone to make a point to go see it. I’ll be in Wyoming. No clouds.

We are all doing well up here, except for the ice that still lines my driveway. Laura still has quite a gimp, but she continues to feel so much better and different than she did two weeks ago before her surgery that there’s no adequate way to compare. She still has small troubles: minor “normal” headaches, hand tremors, infrequent momentary dizziness, muscle aches, food tastes wrong, and her vision is worse. But it all seems like small potatoes. Her oncologist was overjoyed to see her today. Laura sees an opthamologist tomorrow about her eyes.
Laura asked her onc if she thought it would be OK if she went to Hawaii after her radiation treatments are complete in about two weeks. The doctor said “absolutely!” Laura said, “Good. I was worried you might say my head would explode if I got on an airplane or something.”
But I’m a little ahead of myself. I forgot to let everyone know that Laura decided to spend the rest of the month finishing up her whole brain radiation. Why do it now if she’s feeling so good instead of wait until serious symptoms arise — since it’s a one time option? Well it’s obvious that she still has cancer and it’s still affecting her central nervous system. Her neuro-oncologist told us that the conventional wisdom is that some undetectable cancer is already in her brain in addition to her spinal fluid. Although there’s no clear evidence one way or the other, the doctor’s feeling was that Laura’s quality of life would be better if she were treated sooner than later. Her radiation oncologist added the obvious closer that cancer, in general, is more successfully eliminated when there is less of it and it’s at least possible that cancer might not spread again for a long time. So Laura began daily radiation treatments on Tuesday and will continue until March 4th — at which time Laura wants to get the hell out of Dodge.
Now I just finished drinking good beer at the Lakehouse with a big group of friends from UMass who all drove up from the valley just for fun. Thanks to all. After a while I couldn’t help but to get talking about Laura’s cancer surgery and treatments and my friend Brian said, “that’s amazing, you should post that stuff on your blog.” So here goes.
First of all, Laura’s shunt is really an amazing procedure even if neurosurgeons consider it so pedestrian. The whole procedure takes only about 45 minutes, but involves the following: a hole is cut in the back of her skull; image-guided instruments are inserted all the way down into the center of her brain where a catheter (tube) is inserted into the ventricular system; the tube extends outside the skull, but remains under the skin; it proceeds down the back of the head, around the neck, down the right side of the chest, and to the abdomen, where the tube empties into the gut. The surgeon makes only one other incision at the gut and the catheter is threaded under the skin through a thin layer of fat from the head to the abdomen! There’s a valve on the catheter that can be “programmed” by a magnet after the surgery. It is set to maintain constant cerebral spinal fluid pressure and can be adjusted later.
The picture at right shows the back of Laura’s head with metal staples around the incision. There’s a raised bump going down where the catheter heads towards her abdomen. Her brother PJ said that it looks like a port site for The Matrix and the bump is just the right size for a AA battery. This device has eliminated all of Laura’s terrible (and life threatening) symptoms.
The whole brain radiation treatment is also interesting or creepy depending on your perspective. In order to ensure that radiation is delivered precisely, a mask is created of the front of Laura’s head (shown here) and a special pillow for the back of her head. Laura lies on a bed and the mask is secured over her face and to the bed. She is then placed under an arc-shaped machine that delivers the rads. If you are claustrophobic, this is not a recommended procedure for you. However, Laura shrugs it off and couldn’t care less! “You do what you got to do,” she says.

I think we’ve probably had more days with visitors than without since we moved to Ashfield. When we first moved last summer both of our parents visited to enjoy the New England rural summer. And then Laura was diagnosed with cancer, things went way downhill, and Laura’s parents and my mom spent many weeks here in the fall. All of Laura’s brothers, sisters, and in-laws came for Thanksgiving. And we’ve had friends from California, New York, and elsewhere come to stay. Then my parents returned for a few days recently. They left just as Laura broke her leg and things started to really turn south again. Laura’s folks arrived about two weeks ago now and have gone through a roller coaster since then. My sister visited last weekend during Laura’s surgery.
But our best visitors so far have been three of Laura’s cousins — Jack, Chris, and Matthew — from Arkansas. They traveled all day both ways to spend not much more than a day with us all. These boys don’t usually stray very far from home, so it was an extra special gesture to have them here. Luckily they escaped just before we got iced in from a horrible snow, sleet, and freezing rain storm that left inches of frozen slush and floods in Ashfield. Anyhow, it was great to have them here, even if it was for a short time!
And the visits aren’t stopping. PJ, Heather and her daughter Sophie are here for the weekend. And next weekend it’s Justin and Elena. After that several more very welcome guests. Then, if all goes well, the four of us along with nanny Fran (“PJ”) Drescher might take off for a pacific island. Actually that’s a little uncertain — maybe a little too ambitious — but more on that later.

Well you know that Laura is feeling 100% better because she wants to go to Hawaii… soon! Late last year she kept talking about how she’d like to revisit some special travel destinations: vacation in Hawaii and see friends and family in California and Arkansas and Virginia. New Zealand would also be nice but not realistic. Before last week’s surgery she was sure it was too late for any of it. Now it all seems to be a real possibility again.
Laura and I went to Hawaii together in 1997 when I was a graduate student attending a conference at the Ritz in Kapalua, Maui. My advisor paid for our room at the resort, but we couldn’t afford to stay there after the conference. So we showed up at this posh hotel looking scruffy with backpacks strapped on and after we left the resort 3 days later spent the rest of the week at a hostel and camping in a state park by the ocean in Hana. It was a very memorable week. I think the luxury of the resort was particularly fun for Laura. She and I have traveled to many remote parts of the world on shoestring budgets — hitchhiking, backpacking, eating street food, crammed on minibuses, and that sort of thing. It’s part of what defines us. But a luxury resort was a nice treat.
So Laura wants to go back and splurge at a high end spot. (Volunteers to be the lucky nanny?) If you have any suggestions from experience, let me know. We have no interest in shopping or night life. We do want a fun place for our very young kids, a nice location for lounging, fine dining, pampering (not the diaper kind, although I’d enjoy not doing any of that, too!), and easy access to scenic day trips.
Deciding when to go is becoming a major decision. Should she restart radiation in a week and be stuck in Massachusetts for another two or three weeks? Or grab the iron while it’s hot and wait until later for more treatment? Nobody can say how rapidly cancer is progressing, whether it’s encroaching on her brain, when the shunt will fail or when symptoms will return. Conventional practice among oncologists is to treat aggressively as early as possible, but whole brain radiation treatment is a one-time option, so using it now would make it unavailable later when symptoms could be worse. Who wants to make decisions under such uncertainty?
Anyway, feel free to leave a comment here or send me email.

I finally posted some family photos from January. Not many pictures taken last month and the quality is mostly poor because many are from mobile phone cameras.

Here’s Naomi fighting a dragon while spending the day at a friend’s house.

I’m at the hospital with Laura. The girls just left with my sister Karen after a fun visit to the hospital. Laura should be home by dinner. Only bureaucracy now in the way.
Thanks to all of you for your comments, emails, calls, visits, packages, and flowers!! It’s a wonderful feeling to receive so much love and support from all of you. Laura says thank you.

Into the light…


(This is an ongoing series of photos that Laura took late last year.)

Laura was stuck in the chaos of the surgery post-op stations for over six hours after her surgery because there were no beds available in the neuro wing. But she didn’t seem to care. She’s been in good spirits and looks terrific.
When Laura had the heart surgery in August she was completely wiped out, in horrible pain, drugged up like mad, and she stayed in intensive care for 4 days. I figured neurosurgery would have to be worse. But today was completely different. Her parents and I visited with her about two hours after surgery and she was wide awake, in no serious pain, and looking much better than 36 hours ago when she and I arrived. The neurosurgeon said the surgery went without a hitch. He noted that during the surgery he observed that removing a relatively small amount of spinal fluid caused the pressure to decrease significantly. This explains why her headaches had already started to return only hours after the spinal tap as her body produces more fluid in a relatively small volume system and the excess is poorly absorbed because cancer cells are gunking up the works. It gives us hope that relief will be significant and long-lasting. And hopefully the other symptoms (passing out, loss of muscle control, fatigue, etc.) will also be relieved. Time will tell. As far as I know, she hasn’t had a headache since before surgery.
Natalie and Joe stayed with Laura until she got a room late in the afternoon, but I decided to go home and sleep. Laura is doing really well, I’m feeling beat, and she wanted me to go rest. Maybe it was the mild euphoria from sleep deprivation, but I was blasting the radio, drumming on the steering wheel, looking out at the gorgeous fresh snow fall as I drove up the mountain and thinking what a beautiful world we live in. I’m feeling maybe naively optimistic right now. It seems like Laura has a new lease on life.
On Monday Laura was feeling so awful, the pain so bad and long and frequent, the vomiting, seizures, weakness and falls so depressing that we sat in the oncologist office and asked aloud whether all the effort to get to the hospital every day was worth the effort if Laura were dying. We didn’t know what exactly it would be like if she were dying, but we really worried that the train had already left the station.
To see her today after surgery was to see a woman transformed. I’m hoping she stays that way for a long time.

Laura’s folks came down from Ashfield last night, dropped the kids off at friends for an overnight (joy!), and are here now before Laura goes to pre-op. Laura’s doing just fine. No pain. Good sleep. Just a couple minor headaches. May post here as things proceed.