Tell the Bees

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.

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.