Tell the Bees

Archive for June, 2005

Diagnosis… and the first 6-Months

2005

June

Like so many discoveries in life, the path to initial diagnosis was not straight.

It all started in early June of 2005 when an overwhelming fatigue took me over, and I started having excruciating pains in my belly. When I first met with our family physician, and told her I felt like hell, she diagnosed it as stress and had labs drawn and then suggested I make an appointment with a cardiologist for a stress test. I remember meeting with the cardiologist, and breaking down crying, telling him I was sure it was not just stress.

About a week later, I found a lump on the left side of my left breast. I immediately met with our doctor’s on call nurse, who sent me for a mammogram. The mammogram was followed by a breast ultrasound and then a biopsy. After a puzzling mammogram and ultrasound, on June 29th the biopsy confirmed that it was Lymphoma. An appointment was quickly made with Dr. Inhorn, Dir. of Oncology at Mercy Hospital in Portland. He told us the diagnosis was ‘diffuse large B cell non- Hodgkins Lymphoma’ and that it was one of the most aggressive and hard to treat forms of Lymphoma. He described the test they would do to determine the staging, and the probable chemo regimen they would start my treatment with. The next day I had a spinal tap. And then a CT scan and bone marrow biopsy and then a MUGA and then a PET scan… It was determined that my Lymphoma was a stage 3 or, perhaps 4. (1 being the most treatable – 4 the worst) So we were reeling. And the battle began…

July

Craig and I met with a doctor outside of the Mercy system to talk about natural treatments for cancer. We talked a lot about nutrition and other healing aids like prayer and touch. Before I knew it I had a “mediport” implanted in my chest to aid administration of the chemo, and chemo was underway – every 3-weeks at Mercy Hospital. The regimen was the “gold standard” in the U.S. for battling Lymphoma – C.H.O.P.-Rituxan. The PET scan showed some ‘problem areas’ in my stomach. An endoscopy confirmed ulcers in my stomach, but they did not appear to be cancerous. Other lymph nodes around my body however did show Lymphoma.

I started really focusing on my diet, reading and learning about the macrobiotic diets recommended by Michio Kuchi. My fingers got numb and tingling. I had numbness in my jaw. My white blood cell count dropped dramatically. Craig assured me that it meant the chemo was working. My hair started to fall out. The chemo wiped me out.

August

Chemo continued. In early August we drove to Burlington, VT to pick Chloe up at field hockey camp. Mid-August we drove to New Jersey to visit the DeLeeuw’s (the family of Chloe’s birth father) on the lovely lake – Green Pond.

September & October

Chemo continued. In September I went to LONDON with my Transformit colleague Mary Carey to visit a design show. Looking back, I can barely believe I had the strength for the trip, but I remember it very positively – which just goes to prove that if you want to do something, you can put your will to work and do it. And in October I joined my brothers in San Antonio, TX for a gathering of my mother’s sisters, close friends and kids. Kind of a stretch for me, but so worth it to have an opportunity to hear their stories about my mom, their lives together. After returning to Maine, I had my last chemo treatment.

November

A CT scan came back “normal, beautiful.” And after more testing they said I was in ‘complete remission.’

“Break out the champagne but save the good stuff until we make it 2 years with no reoccurrence,” the doctors said.

It seemed like we had the cancer licked.

We threw a thanks-giving party for family, friends and ‘Lina’s Cooks’ – who, for months, had provided our family with wonderful nightly meals. My bookclub gals presented me with a glorious handmade crown.

The four of us drove to Blue Moon Farm in Huntingdon, PA for Thanksgiving. Blue Moon is the 200-acre farm I owned with Bert DeLeeuw, Chloe’s birthdad, when she was born. He was killed in 1990 when she was 6 months old. Under our stewardship the farm was an organic vegetable and flower farm. Now, in the hands of it’s new owners and occupants, our friends the Berger family, Blue Moon has become home to many animals – geese, chickens, turkeys, donkeys, cows, sheep, pigs, and dogs – and multiple families, and a forge. The Thanksgiving table fed at least 40 of us extended family members and friends. It’s different, and that’s always a little difficult to experience, but it is still a center of vibrant life and cultural activity – and that is heartwarming for me.

At the end of the month I had my mediport taken out of my chest – we thought I wouldn’t need it again.

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