Tell the Bees

I’m still at home but on the mend. My shingles and the sinus infection have run their course and I’m scheduled to arrive at the hospital in Boston Thursday, April 3. The actual transplant, when I receive my brother’s stem cells, will be next Wednesday, April 9.

Ten days earlier, as our Easter dinners were settling in, some of Chloe’s friends were plotting their “senior prank” to be carried out around midnight that night. We awoke on Monday to the early morning news that the “prank” that Chloe and nine other seniors (all boys) had carried out in the middle of the night March 23/24 had resulted in the high school being closed on Monday the 24th. Before the shocked seniors had a chance to throw on some clothes and get to the school to fess up, the school administrators had called the police from three towns, as well as the media, and generally created an atmosphere of hysteria.

The “Cape Elizabeth 10″ had taken down many of the suspended ceiling panels in the library of the school (thinking they would be putting them back up the next day), moved a few desks from classrooms into the hallway, and then a couple of independent movers wrote & drew stupid – but erasable – images on a couple of white boards, and spread peanut butter on door handles in several classrooms. To the administrators – superintendent & principal – it appeared to be vandalism and they acted on that impression before the students arrived. Once they all confessed, all ten were immediately given a ten day suspension from school. Unfortunately, the media loves it when something goes haywire with “those rich kids” from Cape Elizabeth…and the general population (even here in CE) is easily swayed by the media’s message.

Chloe was among the first four students to arrive. The police immediately asked her about their mid-night activities and for a list of the remaining students. Let us be clear that we do not condone the “prank,” but we are proud of Chloe for turning herself in, but refusing to rat out her friends – offering instead to call them herself and urge them to come forward.

Over the course of one and a half weeks, the hysteria seems to have calmed down, and support for the “CE 10″ is growing. Rumors of possible expulsion and criminal charges, among other punishments, woke lots of people up to the extremity of the situation. Letters, emails and calls of support for “the punishment must match the crime” have been mounting. All ten students have been doing “community service” work – picking up trash along the CE roads. Individual student hearings before the School Board have begun.

Life with Chloe can never be all dark. The current bright side is that she has been admitted to both of her favorite art schools – Savannah College of Art and Design (Savannah, GA), and Ringling School of Art and Design (Sarasota, FL). To make it even sweeter, SCAD offered her an annual merit scholarship. We’ll have to see what Ringling can counter with.

On March 29 Moriah turned 13. Her friends captured her for the entire day and night on her birthday, so we stretched the celebration to Sunday when we lit candles, ate cake, and shared our birthday offerings with our new “teenager.”

It’s April Fool’s Day. No jokes from me. Just a sincere hope that the next time I write it will be from a hospital bed in Boston. (I wish it were a joke.)

I’m home for Easter, but not as I originally imagined it, with the transplant behind me. Just the opposite. Everything has been postponed until next week. Well, that’s not exactly true. My brother was allowed to move forward with the harvest of his stem cells – they’ll simply be frozen until I can get well enough to undergo the transplant. So he’ll be heading back to California on Easter Sunday and we’ll be hunting eggs and eating with the Brown family here in Cape Elizabeth.

Despite my resistance to being sent home last week, I have to admit it was the right choice. My cold got worse once I was back here and for most of the week, I’ve felt like a truck hit me. Just as the cold was starting to let go, I developed a case of shingles on my left arm. What a strange disease. It’s related to chicken pox, and in fact grows from the dormant chicken pox virus that has been lingering in your body since you were a child. It’s nerve related, following a nerve line from your spine to the periphery of your body, where it erupts as a red rash of sores that hurt when your clothes rub against them and tingle and burn like tiny electric shocks until they finally dry up and get crusty. No wonder people cringe when I mention it. It’s yucky. I’m taking meds to speed its demise.

And the newly revised date for my admission to the hospital is: March 28, 2008. Dr. Armand will be back from his Easter vacation, I’ll be over my ills (hopefully). Moriah’s 13th birthday will be that weekend (March 29). And Spring should be slowly getting established here in Maine. The daffodils on our table are so cheery and remind me of the hundreds of daffodils that grew wild on Blue Moon Farm. We were rich in daffodil cheer. The memory overwashes me now, warming me against the bite of the cold Maine wind.

Yesterday, Friday, March 14, Craig and I and Moriah drove to Boston and I was admitted, as scheduled, to Brigham and Women’s hospital for my “mini allo” stem cell transplant. The nurses did their initial work on me, putting in lines and IVs, asking me dozens of questions, bringing me medications, oral care supplies, etc. My room was noisy and I didn’t sleep well, but we were there and things seemed underway.

But it’s now Saturday evening, March 15, and here I am back at 2 Seal Cove Lane in Cape Elizabeth, not as scheduled, much to our great frustration. Dr. Armand’s proxy doctor at Brigham and Women’s Hospital decided late this afternoon that I needed to go home to get rid of my runny nose and cough, even though NONE of the tests they did on me came back positive for the flu or any viruses.

I guess we should respect his extreme caution. As my blood counts & immune system would have gone down next week as the result of the chemo, I would have been more vulnerable to viruses, germs in general. But, it’s also probably safe to assume that I would have gotten better before then. It’s especially annoying because my regular Dana Farber doctor, Dr. Armand, knowing I had a minor cold, had given us the ok to come on down to Boston. Time and money spent…At least they said Mark could stick to his schedule of donating his stem cells; they would just be frozen until I (and the doctors) are ready for the transfusion/transplant.

Na Ja, as they say in German, oh well…. let’s let the negative energy go and look for the silver lining. More chances to do things out in the world before the restrictions that will be imposed post transplant….eat out at restaurants, go to movies, go out any where. A chance to get a better room at the hospital next time (the nurses told me I could request a certain floor or room). More time to help the cleaning team here in this dusty house. In general more time to get ready emotionally and mentally for this transplant.

Let’s start with today’s good news. Chloe has been accepted at the Savannah College of Art and Design (SCAD), and they are offering her a scholarship! Chloe’s admissions counselor at SCAD called today asking for some paperwork from the Scholastic Art Award (see below), saying they were processing a scholarship for her. I said, this must mean she has been accepted – although we haven’t received a confirmation yet. She said, oh yes, she’s been accepted; her letter was mailed March 7. (So where is it?) Her word was good enough for us. Chloe is elated. We all are… Accepted at her two top choices.

Actually I’m doing laundry. All clothes that I bring have to be packed clean, directly from the dryer into plastic bags. Even though I suspect I’ll spend my week in hospital issue johnnies and pants, I can’t resist taking a few more interesting pjs along with me, and a few other things from home. I’m already homesick and I haven’t even left yet.

Yesterday in Boston , my nurse, Toni, reviewed the whole stem cell transplant schedule, this time detailing more of what to expect once I leave the hospital. “Day 0″ is scheduled as March 20, when Mark’s stem cells will be harvested and then transplanted to me.  Like gardening.  The first 100 days thereafter are the most critical. They’ll be lots of trips  back to Boston to check in with Dr. Armand. “Engraftment” will begin the second week of April. At one month the doctors will start measuring the mixture of my and Mark’s DNAs in my blood. My blood/DNA samples will begin to look like Mark. My blood will make Mark’s cells, and his bone marrow, for my body. Just a little weird to contemplate. Good thing I really like my brother.

Toni told us that dust and mildew will be my biggest enemies in our house. So absolutely no going to the basement. The house really needs cleaning too – dusting primarily. We are having carpets and rugs cleaned this coming weekend. Our regular cleaning lady is coming Tuesday, March 18. Some friends are planning on helping to clean more thoroughly prior to my return.. on the 21st.

I can look forward to some manifestations of the GVHD (graft vs. host disease) – most likely GI tract disorders, maybe rashes, possibly liver problems. Although they will give me drugs to reduce or prevent the risk of GVHD.

Sound like fun? I’ll send more details from the hospital.

I’ll have my laptop, so email (lina@maine.rr.com) will be a good way to contact me, or try my cell phone 207-749-0075.

Thank you again for all the honey/love and support.