Tell the Bees

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.

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.

February 2008

2/27-29

Following the tests, Carolyn tells me I need a blood transfusion and schedules it for the next day. My h&h (red blood cell) counts are the lowest she’s ever seen them. I should expect to feel more energetic.

We close out the month with the good news that the lymphomic ulcers in my stomach are in remission… opening the door to proceed with the transplant. Logistics with scheduling the harvest of stem cells from my brother at the facility in Boston may delay us… we’re all waiting to hear.

2/25
Carolyn – Dr. Inhorn’s wonderful nurse in Oncology at Mercy Hospital – calls to report that that PET scan is clear and Dana Farber wants to move forward quickly with the transplant. However, we need to do several tests first and send the results to the insurance company before they will approve the transplant. So there goes Wednesday. I’ll spend the day at the hospital getting tested and tried. My life suddenly has a narrowing focus.

2/23
Still feeling a little dazed and having bouts of indigestion. Is it the ulcers, or just my digressions from the recommended diet? TUMS save me, and pain killers. Despite this distraction I complete the fafsa and successfully submit it. Yea!

2/15
Dr. Armand calls. GREAT NEWS! My brother Mark, based in Glen Ellen, California, is a total DNA match! So he can be the donor of stem cells to me. Everyone is ecstatic. Mark is excited and ready to make travel plans, but we can’t make decisions until we get the results of the chemo on the Lymphoma. If it’s gone or almost gone we can proceed without another session of chemo. A PET scan is scheduled for 2/20 and an endoscopy for 2/26. I get the tax info to the accountant.

2/14
Chloe leaves for a two week trip to Costa Rica. It’s a school exchange program. Students from Costa Rica will come to Cape Elizabeth in April. 80 degrees and sunny sounds good from this cold and snowy town.

2/13
Second round of chemo. Three days of infusions in the hospital with one overnight in the middle to accommodate the 24 hour drip. I come home wasted and sleep for three days. The drugs are taking their toll.

2/2
I gathered five close women friends to my side to help me think the transplant question through. They lauded my strength, and acknowledged the breadth and depth of the support I and our family have in this community, and around the country (some international as well.) Did it help me? It strengthened my resolve to move forward with the transplant. Craig agreed. I emailed Dr. Armand and told him “Let’s go!” and that I intend to be in the successful 20%. I talked with Dr. Inhorn. At 92 pounds, I’ve gotten doctor’s orders to “bulk up” in order to be strong enough for the transplant. I gain five pounds. I’m less “bony” and generally feel better. Just sleepy all the time. My drowsy lack of focus poses quite a challenge to my task at hand: organizing our financial information for the accountant to do our 2007 taxes, and then completing the fafsa (Free Application for Federal Student Aid) by the end of the month.

2008 January

The endoscopy revealed two large ulcers in my stomach. The biopsy tells us they are lymphomic.

My oncologist here in Maine calls for checking me stem to stern….a PET/CT scan ASAP, then a check of the CSF (cerebral spinal fluid), and a bone marrow biopsy. He consults with the doctors at Dana Farber in Boston. By mid January there is a proposal to start me on a new standard chemo regimen called RICE to get rid of the current active Lymphoma.

This would be followed by yet another stem cell transplant in Boston. This time they have proposed a relatively new “mini-allo” transplant. When the stem cells come from another person, it is called an allogeneic transplant. The donor may be a relative or a complete stranger. The important thing is that the donor’s blood is closely matched to yours. This is more likely when the donor is your brother or sister.

A ‘mini-allo’ transplant is really an immune system transplant. Rather than undergoing massive chemo therapy (like I did 2 years ago with the 1st transplant) – the treatment relies on the donor’s cells going to war – and beating my unhealthy cells. Compared to last transplant: somewhat experimental, less chemo treatment for me, shorter time in the hospital, but longer time of confinement at home afterwards AND we had to find a DNA-stem cell donor match.

My brothers were immediately recruited to send blood samples for review. They, of course were instantly on board.

1/22. My first 3-day chemo regimen. One night in the middle I have to stay in the hospital for a 24 hour drip of one of the drugs… back with my old friends on the 3rd floor of Mercy Hospital.

1/30. Craig and I went to Boston to meet with my oncologist Dr. Phillipe Armand at Dana Farber for a face to face discussion of the proposed transplant. It was a very emotional meeting for me. Dr. Armand said this transplant is my only chance for eradicating the Lymphoma, and it’s no guarantee.

Here’s his description of the proposed “mini allo”: It would begin with four days of light chemo aimed not at the Lymphoma (which hopefully the RICE regimen had beat down) but to make room in my bone marrow for the incoming donor cells. My own immune system will be wiped out to make room for the new cells that will grow along side my own cells and eventually attack my cells – especially the Lymphoma cells. This “immune attack” is the main thing this stem cell transplant has going for it. Then he described the downsides. The most likely is some measure of the graft vs. host effect where the donor cells attack my normal cells. This can be minor, like a skin rash, or much more serious like damage to internal organs. These can be treated with medications, but to avoid it the doctors would intentionally create “immune suppression ” in my body. The short term effect is a much longer period of restrictions following the transplant (an intensive 6-12 months).

The biggest risk is that the transplant does not work. What is the chance of it working? Dr. Armand said they have up to a 20% cure rate at DFCI, and reminded me that without the transplant my cure rate would be 0%.

He then asked me what I wanted to do. I told him I would probably do the transplant, but I was not ready to commit.

Hello bees (dear friends and family),

It’s been over a year since we’ve sent an update on my Lymphoma journey. Our apologies for being so out of touch, and thanks to so many of you for contacting us to find out on your own how things are going and to lend support.

2007 January
2006 had ended with whole brain and back radiation. I have to admit that brain radiation was the spookiest treatment I’ve had so far. Just the idea of subjecting my brain to radiation was scary, and then the experience itself was eery… I could “see” the radiation in my peripheral vision. Thank goodness I connected with a fellow Cape Elizabethan, John Ciraldo who had undergone brain radiation two years ago and is now back to winning trials in court again. His recovery and reports of minor side effects (difficulties with directions to physical locations) encouraged me to charge ahead. And it seemed to do the trick.

Chemo treatment to my brain/spine continued monthly from January to June.

2007 March
Chloe and I flew to NJ to join with the DeLeeuw family to celebrate the life and mourn the passing of Bert Jacob DeLeeuw, Chloe’s grandfather on her birth father’s side. For me, and Chloe too, it was heartwarming to be part of the gathering of this remarkable family, which of course filled me with memories of her father, Bert Jay DeLeeuw, whom we lost when she was 6 months old.

2007 April
All four of us – Craig, Lina, Chloe, Moriah – rented a villa in the Montego Bay area of Jamaica for a glorious warm and sunny week. All meals cooked for us. Laundry done. All we had to do was wake up and go the pool or the beach or the veranda to eat, drink, enjoy friends (the Hellier family was in the same community that week) and relax. Even Craig left work behind, went swimming, and hung at our Round Hill Resort beach bar drinking Round Hill Rum Specials and flirting with the beautiful bartender. It was great to return to chilly Maine restored and with good tans!

2007 May – July
My attention was focussed on working with the doctors to figure out the chronic and impressive pain lingering in my left shoulder and upper arm, and the numbness in my left hand. We were seeking to define an assumed problem with nerves in the “brachial plexis” (between your shoulder and neck). Following an EMG, MRI and PET scan, and numerous physical exams by neurologists, hand specialists, and other orthopedic doctors in Maine and Boston, the radiologists were certain it was Lymphoma. The oncologists were not convinced (it wasn’t acting like typical Lymphoma) but in the end decided it might be the “better part of valor” to undergo some radiation to the brachial plexis.

2007 June
Chloe and I flew to New York City for her to join with students from around the country at Carnegie Hall to receive prestigious national Scholastic Art and Writing Awards from The Alliance for Young Artists and Writers. Chloe had won a national Silver Award for her self-portrait photo essay. She had also won two regional Gold Awards for the same photo project, and for a ceramic work of two intertwined “flip-flops” inscribed with the words from Jack Johnson’s song “Better Together.” The Alliance organized special sessions in NYC for the students: Chloe chose to meet with store designers at the Anthropologie store at Rockefeller Center, and a behind the scenes look at the history and current focus of the Whitney Museum of American Art. As you might guess, the Anthropologie visit was her favorite (although she enjoyed the “Summer of Love” exhibit at the Whitney), along with independent visits we made to Betsy Johnson’s store, ABC Carpets, and the Prada store among others in Soho. Our friend Jim Dart treated us to dinner at the Cafe de la Artistes. I came home exhausted, but pleased.

2007 June
Chloe and I got a thorough introduction to the macrobiotic diet/way of life from a macrobiotic counselor based in Boston, who does sessions / consultations regularly in Portland, ME. He evaluated me at that time and developed a diet and some lifestyle changes / additions for me. We embarked on it. She was quite a trooper. I lost 20 pounds, rested more, and felt generally pretty good. Chemo to my brain/spine ended.

2007 August
I underwent radiation on my brachial plexis. During and following the radiation I did a lot of physical therapy for the pain in my shoulder, the neuropathy in my feet and my overall balance.

2007 September
Over the Labor Day weekend all four of us flew to Los Angeles to help celebrate my Aunt Jean’s 90th birthday. For years I have wanted to see the iconic neighborhood she’s lived in for over 50 years – Lakewood. We had never been to L.A. and Chloe wanted to check out a couple of art schools too. It was ungodly hot – over 100 degrees. Thank goodness we had an air conditioned SUV with a navigational system. Neither of the schools (Otis College & Pasadena Art Center College of Art) proved to be interesting to Chloe. We had lunch at the mall that is home to the Kodak Theater, and viewed the sidewalk of the stars. It was a totally unglamorous experience of Hollywood , L.A. and Pasadena. Too hot. Too dirty. Too crowded.

Back home again, I decided not to travel again for a while. Too wiped.

2007 September-November
With the advent of school, I fretted about Chloe’s applications to colleges (to her great annoyance). She was much calmer and together we developed a workable time line for her submission of applications with portfolios to the two schools she had selected – Ringling School of Art and Design in Sarasota, FL and Savannah College of Art and Design, in Savannah, GA – before Christmas. She did great and achieved the goal. I did some writing for the Transformit website.

This period became a kind of blue time for me. Late fall there was no more work for me at Transformit, and none on the horizon. My energy level was super low. But I was getting some mobility back in my left hand and I had a normal MRI, so it seemed the radiation had a positive effect. I started taking an anti-depressant, and going to yoga classes.

2007 December
I started having severe pains in my stomach that were eerily reminiscent of the very beginnings of this journey in the early summer of 2005. Rumblings that undermined an otherwise fairly good time for us. Craig was doing quite well, as his staff and his funding at CommonDreams.org continued to grow. Moriah was flourishing in 7th grade, academically and socially. Chloe had the big burdens off her shoulders and was waiting to hear from the schools.

The pain in my gut continued through December. I was throwing up meals. The pain was tiring me out. How was I going to get the Christmas tree decorated?!

The tree and the house got decorated (although I never did find those darn stockings) . Christmas came and went. It was not one of our grandest but all agreed we had much to be thankful for. I talked with my oncologist and we scheduled an endoscopy for January 8.