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.

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

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Last evening around 6:00, Craig woke me to join him and some friends who were coming to cook and eat dinner with us. He reports that in my half sleep/half awake stupor, I asked him if the Easter bunny had come, and had he hidden eggs? Craig gently reminded me that Easter had come and gone, it was 6 PM on a Saturday evening, and that our friends were arriving soon for dinner. It was a wake up call, literally and figuratively. I needed to wake up to greet our friends for the evening, and I needed to awaken again to the reality of every-day life.

I had literally slept April away. We got home from the transplant on April 10. I took a shower, slid into my own pjs and fell into bed. I was consumed by sleep. For day after day after day. When I woke up, I ate, and then back to sleep. Actually it felt like the right thing to do. The stem cells were doing their work. Each of the two camps seemed to embrace each other in the campaign to create my new xy lifestyle. And they needed me to recharge constantly to feed them.

Last Wednesday, April 16, an exhausted father Craig, and an almost sick daughter Chloe boarded a plane, beginning their 8 day adventure in the deep South making last minute visits to the two schools Chloe had targeted: Savannah College of Art & Design (GA) SCAD, and Ringling College of Art & Design (Sarasota, FL). Craig worried about leaving me alone with Moriah, and organized a league of friends to drive me to appointments, visit on a regular basis to make sure I was doing OK, and to help with some errands like grocery shopping. I did sleep 24/7 for at least the first week we were home after the transplant, so I can understand his concern about me. The title of this post is a little misleading because the response to his request for help was so good.

This past weekend we had overnight guests. Saturday night our friend Becky arrived prepared to cook us a wonderful dinner, and to stay overnight with her daughter Kisa, one of Moriah’s best friends. After our delicious meal all four girls settled in to watch a movie together. Sunday night Lina was joined by friend Hannah for dinner and another overnight stay (complete with movie.) Both of our daughters were spending the night with friends.

Other friends have grocery shopped for me. Others have driven me to doctor’s appointments. The last two appointments proved to be endurance tests… how long can you sit in a hospital waiting room? At both visits it was determined that I needed platelets. They had to be ordered from another hospital in town, and then they needed to be irradiated. About a 2 hour process. Both times my friends serving as chauffeurs opted to go home for a while and pick me up when it was over. Our friends are very generous with their time, and also smart. (What are platelets? irregularly shaped bodies that live in our blood. They provide the necessary proteins, along with other substances, to cause coagulation when bleeding occurs.)

Meanwhile Craig and Chloe are recuperating in the warm sun of Georgia and Florida. Their first destination after flying into Jacksonville, FL was Savannah, GA.-SCAD. They were able to see the school though the eyes of a SCAD student tour guide, but found that it was impossible to just wander around on your own without a student ID. So they went to the SCAD book store, walked around town and went to the beach. You drive 18 miles through marshlands to a long white sand beach, with a lively surf. At this early date in the season, the beach was basically theirs. After two days of this rough life, they drove 7 hours to Sarasota, FL. They walked around town, visited the Ringling Art Museum, as well as the Circus Museum, and scoped out the beach (of course). Today they toured the school. They spent some time at the beach, and lounged around the hotel pool. Tonight they’re going to a Sarasota Reds minor league baseball game. Did I say this was a college tour trip? Chloe has to decide between these two before May 1. But right now, her tan is more important. After all, she’ll have a full week to decide after she gets home.

I can’t wait for them to get back here.

Happy Birthday, Lina! Today is the first day of life with my new stem cells from my brother, and therefore new blood made by the merger of my stem cells with his, and therefore – from some perspectives- a new person. It’s kind of wild to think about…my DNA will now be xy, I’ll get his allergies, and who knows what else? I can’t wait to find out. We’re coming together, right now.

The transplant went smoothly yesterday afternoon – no vomiting, no cramps, no convulsions, no problems breathing. So far, I’d say my blood stream is happily accepting these new brothers and looking forward to the work they are going to do battling against cancerous cells. As a refresher, let me explain again the kind of transplant I just went through. It’s called a “mini allo” because it uses a lower dose of chemotherapy, followed by an infusion of disease-fighting stem cells from a donor (my brother) whose white cell antigens closely match mine (allogeneic transplant.) The low initial dose of chemo “stuns” cancerous cells into not growing, while the infusions of donated stem cells then battle against the cancerous cells.

Of course the chemo also wipes out good cells in my body, including my immune system. My blood counts and therewith my immune system will continue to drop for the coming two weeks or so. This means I will pretty much be hibernating in my clean (thanks to all who helped!) house, eating a restricted diet of food that must be cooked by us. While I can’t go out into the public arena, visitors are welcome at our house, or outside if it’s warm enough. You won’t even have to wear a mask or gloves. This will go on for around 90 days. Then we will see how I am doing.

Enough for today. I’m going home this afternoon. I just wanted all of you to know that I am doing really fine, and that I know it is because of all of your support and positive thoughts, images, prayers, hugs, good food, and just plain love. I figure the best way to thank you is to get well and live a long time. I’ll do my best.

xo~L

My view is exactly the same one I had two years ago, just two floors higher. Huge ventilation pipes no longer dominate; instead I see buildings, all variations on the theme of rectangle, and some sky – blue today. My room is a double room, but I am the only person in it – so I have lots of space. I feel like I should be using the space to exercise, but yesterday I felt drugged all day due to a large dose of antihistamine I got to help with the itching from the shingles. I just laid around, hardly even watching TV. Today I feel better, but not yet inspired to work out.

We arrived Thursday evening. Craig, Chloe and Moriah escorted me to Brigham and Women’s Hospital. Two wings on each of two floors at this hospital are dedicated to bone marrow and stem cell transplant patients. The air is filtered. All guests wear masks and latex gloves. All of my things were wiped down with antiseptic wipes when we arrived. No live plants are allowed, and no cut flowers. We’ve been getting a minor charge out of watching the reactions of hospital staff when they see my two calla lilies – artificial of course. The lilies invariably evoke admonitions against cut flowers, until they realize the flowers are fake!

Today is my final day of chemo treatments. I’m receiving two chemo drugs: Busulfan and Fludarabine, along with “IV fluids” – usually a saline solution with something like Potassium or Dextrose added. Then there are anti nausea drugs, and basic saline solutions to clear lines. As I write I am being hooked up to my second to last bag of chemo. Tonight at 12:30 I’ll get the last one, for a final 3-hour drip. Tomorrow I have the day off – to let the chemo move through and out of my body.

Wednesday is “Day Zero” – the day for the transplant, when I receive the 15 million stem cells donated by my brother Mark. They will be introduced into my body via an IV line, much like a blood transfusion. And then the next chapter begins: how will our stem cells get along? My vision is the two sets of stem cells linking arms and marching through my body singing “Solidarity forever!”