An Update from Chris McCandless, in Verse and Prose

Some time has passed since last words graced this page.

Like Prospero, our gifted wordsmith-sage

Hath to Vermont removed himself of late

To build anew foundations, while his mate

Must bide her time until her strength returns.

She watches from afar his work, and yearns

For that sweet time when once again they’ll call

Those granite-graven walls their home; the hall

Where sunlight pours into a spacious room

And all her green companions dance and bloom.

So now their days are passed back on the farm

Where Ethan toils to make their barn a place

Susannah can be safe from further harm

And lives can once again be lived in grace.

We note, with apologies, that a different author is at the keyboard.

It has become clear that the intrepid author of previous blogs has temporarily traded in his computer for a shovel and a skid-steer (a sort of mini-bucket loader) in order to excavate the foundations of the famous gravestone-clad barn-house (see photo) and prepare it for winter, as well as the hoped-for PASS* early next year.

It is also clear that the intrepid subject of the medical miracles and other adventures chronicled in previous blogs is not yet prepared to seize upon this authoritarian opportunity. (See photo)

It is also clear that many, many of you faithful readers are hungry for news of these two beloved people, and that as you continue to hold them in your thoughts and prayers, you need a clearer picture of their current situation. Hence the pressing into service of Christopher as Temporary Reporter – quite the challenge, given his long-time love affair with computer technology…

*PASS: Physician Approval of Susannah’s Systems

At the end of June, Susannah’s one-year appointment at Mt. Holyoke ended; it was a wonderful, welcoming and supportive place to which this author hopes they may someday return. The lease was up on the small faculty apartment where she and Ethan had lived since last August, and so they moved back to Vermont. Ethan’s father Don had recently completed a lovely little structure close to the Mitchell home on the family farm: a flexible building able to serve as a small conference center, a guest cottage, a “mother-in-law apartment” – or a newly-constructed, easily-cleaned and therefore acceptable living space for a neutropenic Susannah and Ethan. In an epic day, Susannah and Cheryl left for Boston and the Dana Farber Clinic at 6AM, in a car stuffed with meds, clothes, and various other “clean” items. Ethan and Christopher dismantled the apartment, spent the day packing a Plymouth Voyager van and a Subaru Forester with extraordinarily engineered efficiency… and still wound up Joad-like, with numerous chairs, bicycles and a dolly tied to their roofs. However, all elements arrived safely in Vermont by evening, and with help from Don and Yuki doing the “disinfectant wipedown” as things came out of the two vehicles, we were able to get minimally set up – especially the bed with clean sheets and quilts – by 10:30pm… just as Susannah and Cheryl pulled in from their 16+ hour day in Boston. Utter exhaustion had set in, but the summer stars were out in the delightful, deep silence of a June night in Vermont. For the first time since Christmas, Susannah and Ethan were home!

So how is she doing? Slowly, guardedly improving – but with some worrisome setbacks and challenges. ECP (extra-corporeal photopheresis.) was declared a success at warding off GVHD (graft vs. host disease) and was suspended in June. A significant portion of the pharmacopeia (as photographed by Ethan on 4/20/10) has been discontinued or reduced. Although Susannah’s new bone marrow/Blood Cell Production System is at work, she still needs transfusions every few weeks – mostly of red cells, which are suppressed by some of the drugs she takes each day. Sometimes she needs platelets. Her white cells/immune system appear to be holding their own, hopefully less naïve than a few months ago, but she still cannot be unmasked in public places, have indoor visitors other that immediate family caregivers, and (hardest of all) should keep her distance from children, cats, and her amazing collection of fantastic flora.

Until mid-July, Susannah continued to struggle with her digestive system, unable to eat in any real quantity the lovely, fat-and-protein-rich dishes with which Ethan constantly attempts to tempt her. Her weight gain was agonizingly slow, hovering in the 120lb range. Yet her abdomen seemed increasingly distended and uncomfortable. Karen Gilder is the wonderful oncology nurse who works with Dr. Neil Zakai, Susannah’s favorite Vermont hematologist/oncologist at the Fletcher Allen Hospital in Burlington. He made the original diagnosis of CMML last summer, worked with Dr. Antin and the Dana-Farber team to prepare her for transplantation, and he is once again her primary physician, now that she is back in Vermont. Upon seeing Susannah, Nurse Karen urged an ultrasound test, which revealed the presence of a great deal of extra fluid in the abdomen, putting significant pressure on all the organs therein… This condition, known as ascites, led to the surgical draining of a great deal of fluid on July 20^th. This took her weight down to 102lbs; which was more than a little disconcerting to all of us. Concerned that the ascites might signal some malfunction of her liver, Dr. Zakai ordered a biopsy of that (overworked) organ for July 23^rd. This was her third liver biopsy in less than a year; she cheerfully offered the good doctor the opportunity to have his jugular vein vampirized the next time...

In some ways, the hardest part of these in-hospital, out-patient procedures has been the 12-hour NPO restrictions before each test; able to eat and drink such small amounts at a time, Susannah quite literally becomes nauseous when not able to do so every few hours. During these often lengthy procedures, Ethan, Jean, Cheryl and Christopher all took turns accompanying our patient patient.

So…. Biopsy results indicate that Susannah’s liver is in remarkably decent shape, despite the many dreadful drugs it has been trying to filter for her lo, these many months! This is a great blessing, but it leaves Dr. Zakai and Susannah wondering just what caused the ascites, and whether it will return. A follow-up ultrasound indicates that it might be doing so already, but at a slower pace.

Susannah and Ethan are scheduled for a day at the Dana-Farber Clinic on Tuesday 8/3, including an appointment with Dr. Antin. Please keep them in your hearts as they travel, and as they await new understandings of her situation.