Tell the Bees

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 LA and Chloe wanted to check out a couple of art schools. It was ungodly hot – over 100 degrees every day. Thank goodness we had an air conditioned rental 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, LA 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 Common Dreams 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.