Tell the Bees

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 home 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.

Our transplant nurse at the Dana Farber Cancer Institute (DFCI) is Toni Dubeau. Yesterday she confirmed that I will be admitted to Brigham and Women’s Hospital in Boston on Friday, March 14. My chemo will start on the 15th for four days, then one day off, and then I will receive my brother’s stem cells on the 20th and perhaps the 21st. The goal for the chemo is to suppress my immune system, making room for Mark’s stem cells to get established. If all goes well, I will hopefully go home that weekend….just in time for Easter. Somehow it seems appropriate.

My donor/brother Mark is flying to Boston from San Francisco tomorrow, to be at DFCI bright and early on Monday, March 10 for tests. He’ll come up to Maine that evening and stay here with us until they need him back at Dana Farber to “harvest” his stem cells, probably on the 19th or 20th.

Craig and I have to go to Boston all day on Wed. March 12 for a “training session” on the transplant, and to sign consent forms. Too bad we can’t just type in the destination and put the car on auto pilot. The pain is alleviated somewhat by the fact that Craig just bought himself a new (used) macho macho Jeep Grand Cherokee 2004, which is a huge improvement over his old 1997 Jeep. So with a great sound system, heated seats, and a powerful engine (at least compared to my Mini-Cooper), he’ll almost have fun driving the 90+miles to Boston and back every week for a while, or perhaps even much more often in the next two-three months.

from today’s local paper…

By Wendy Keeler

Cape Elizabeth High School senior Chloe Brown has won enough Scholastic Arts awards that she could almost create a sculpture with them – most likely an award-winning sculpture.

The 18-year-old just won a regional Scholastic Arts Gold Key award for a work that features deconstructed and reconstructed ink drawings.”It is two pieces together,” Brown says. “One is an ink drawing, and the other is a dress I constructed out of ink drawings. I cut up the drawings and reconstructed them as a dress.”

Brown felt enormous excitement about winning this year’s award, despite having done so before. Last year she won a Silver Key award in the national competition and two regional Gold Key awards: one for a photographic self portrait and another for a conceptual ceramic sculpture.

“It is a huge honor. Getting an award the second year in a row is great,” Brown said.

It was also a big surprise.

Around the country, schools enter students’ outstanding work into regional competitions, in which work is exhibited and judged. Pieces that win at the regional level move onto the national competition.

In the fall, Brown’s CEHS art teacher, Richard Rothlisberger learned that because Maine College of Art (MECA) in Portland was stepping down from serving as regional sponsor, students would have to enter their work straight into the national competition, which Rothlisberger helped Brown do.

While in Costa Rica during February break, however, Brown learned pieces had in fact been judged regionally, and that her piece will move on to New York for the national competition along with other regional winners in the U.S.

Awards or not, Brown, the daughter of Cape artist Lina Newhouser and Craig Brown, will create art. That’s what she has done since she was a little girl, “and my mom got me into it,” and that’s what she will continue to do. Brown plans to go to art school next year.

March 2008

After 2 weeks of uncertainty, e-mails today from our nurse/caseworker at Dana Farber inform us that because of scheduling challenges (i.e. too many people battling cancer), I will probably be admitted quite soon – probably Friday, March 14th… and that they’d like my donor/brother Mark to fly to Boston from San Francisco by Sunday, March 9 – in three days! Plans are suddenly on the fast track. My doctors wanted to move fast but – much of the long waiting/scheduling uncertainty was because Anthem/Blue Cross was really slow in agreeing to pay for the transplant. Today they finally gave the OK.

Welcome to tellthebees.org.

This chronicle of our campaign to beat back the non-Hodgkins Lymphoma that keeps trying to dominate Lina is ongoing. We’ll keep you up to date with what’s happening with us through this site and we hope to hear back from you – either by commenting here or through a letter, email (lina@maine.rr.com or craig@commondreams.org) or phone call….or the best of all, a visit. ~Lina

UPDATE from Craig: Lina lost this battle and we lost Lina on July 18, 2008.

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