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Archive for 'Lina'

May..or is it April..or March or perhaps even June?

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.


Mom & Mo Home Alone

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.


I Know You, You Know Me. One Thing I Can Tell You is You Got To Be Free. Come Together, Right Now….

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.



Hello from Room 59, 6th Floor, Wing 6C — Brigham & Women’s Hospital

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!”


Trot trot to Boston

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.)


Home for Easter

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.


Never Mind: Fast Train to Transplant Derailed

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.


Congratulations Chloe!

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.


Lina’s Packing for Boston

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 ( 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.

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Boston Dates Confirmed

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.

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