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Archive for 'Lina'

Suddenly… On the Fast Track to Boston

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.



Welcome to

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 ( or or phone call….or the best of all, a visit. ~Lina

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


Moving Forward…

February 2008


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.

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.

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!

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.

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.

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.

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.

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It’s Back. Next Up – A ‘Mini-Allo’ Stem Cell Transplant

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.

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Hello Bees… A 2007 Recap

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.

Better Together2007 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.

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Lina Update: Fighting the Brain Tumors


Dear Friends and Family,

It’s been a long time since we wrote to you about the new brain tumors discovered at the end of July, but we kept waiting for results and a follow-up plan to fall into place so we could report it to you.

Lina received chemo therapy throughout August – two treatments at Dana Farber Cancer Institute in Boston, two in Portland. The treatment plan she’s on for the brain tumors is one pioneered by a noted neuro-oncologist at Memorial Sloan Kettering Cancer Center in NYC. It is in clinical trial at the Dana Farber. It involves a chemotherapy mix Lina hasn’t had yet, followed by radiation – which seems to be the routine for brain tumors. Post stem-cell transplant, Lina is in “uncharted territory” according to her oncologists – so each new step has to be newly designed.

Her symptoms from the brain tumors subsided and the docs were confident that the tumors were shrinking.

But by the end of August her weekly blood tests a.k.a. as ‘labs’ started showing a very low sodium count, as well as acute anemia. Both somewhat mysterious to the docs. Lina stopped driving, due mostly to the numbness on her left side resulting from ? … residual swelling in the brain from the tumors…or some injury at the level of the spinal cord, from the lymphoma or the treatment? no one is sure.

Lina also got new glasses in mid-August, due to development of double vision. The eye-doc said her eyes used to be able to compensate for it, but now she needs a special prism in her glass lenses to help out.

A brain scan – MRI- on 9/14 showed the active cancer of the small brain tumors gone and the larger one 90% resolved. Everyone was pleased that Lina was responding to the new drugs, despite the low blood counts and swollen face (“moonface”) reaction to the potent steroid in the chemo drug mix. The Dana Farber oncologists suggested one more short dose of Temodar (brain tumor chemo drug) prior to radiation, but Lina’s blood counts needed to be higher before she could take either of those. On 9/19 she had a blood transfusion to help with the red blood counts. 9/27-10/1 she got shots to boost her white blood counts. 10/9-13 she took the Temodar at home as pills.

September 25 Lina had the opportunity to hear one of her favorite poets, Mary Oliver, read at Bates College in Lewiston, ME.

In October she started a program of increased supplements to boost her immune system, since being stronger than the Lymphoma seems to her the best road to beating this beast. Much of October we expected a schedule for radiation to materialize, but Lina’s blood counts remained too low to make that plan.

She also began reading and using Boundless Healing: Meditation Exercises to Enlighten the Mind and Heal the Body by Tulku Thondup to help her visualize the healing and keep her optimistic.

10/16 Lina made sure our taxes were finally filed. And helped celebrate Chloe’s 17th birthday with a great dinner. 10/17 she went on a town-sponsored field trip to Boston’s Italian North End…happily eating her way through both days – she had to recover somehow from those tax forms!

However, at about the same time a new, severe pain developed in her right thigh, and occasional shooting pain in her lower back…symptoms of yet more new Lymphoma in her lower back?

On October 25 we started a series of scans to assess her current cancer status. On 10/25 Lina had an MRI done on her upper spine. On 10/27 her brain MRI was done. Both came back clear of any active cancer. Great news! But it was hard to rejoice until the 10/30 lower back MRI results were in.

‘Mapping’ for the radiation was done for full brain and lower back. Re-radiating the lower back is a bit tricky. One cool thing is the face mask the radiology team makes as the “immobilization device” – molded of a plastic mesh, the mask is made over the patient’s face and used to keep you still during radiation – and to mark on so patients don’t have to have tattoos on their face and neck anymore. And you get to keep the mask after radiation is done. Lina’s into it as a sculpture.

Unfortunately the MRI results on the lower back showed an abnormality in the L2 and L3 areas of her spine. It was possible that this was inflammation in an already irradiated area, or Lymphoma again. So the docs at Dana Farber wanted a lumbar puncture (a.k.a. a ‘spinal tap’) and PET scan to help assess. These were done on 11/1 and the results confirmed that there were new Lymphoma cells in her spinal fluid.

All the docs agreed that it was very unusual to have the cancer disappearing in one part of the body while growing in another part. But the L2 and L3 areas of the spine were where the largest area of Lymphoma was located in January, so it was a weakened site already.

On 11/2 the plan was made for chemo therapy directly into the spinal fluid to treat the new lymphoma: 2 times a week until the Lymphoma is gone from the CSF (cerebral spinal fluid). Because getting two spinal taps a week for 4-8 weeks borders on inhumane, the alternative was to have an ‘Ommaya Reservoir’ implanted into her brain by a neurosurgeon. (The ‘Ommaya reservoir’ is a plastic, dome-shaped device, with a catheter attached to the underside used to deliver chemotherapy directly to the central nervous system (CNS or brain and spinal cord). Last Friday, 11/3 Lina was admitted to Maine Medical Center Hospital and the brain surgery was done at 7:00 am on 11/4. She did great and was back in her room by 9:30 am. She spent a 2nd night in the hospital and came home exhausted on Sunday 11/5. That night she fell asleep on the floor of our walk-in closet. I guess it was the cocoon effect

The next day the new round of chemo started at Mercy Hospital, where she spent the night after throwing up for an hour after the chemo was given. It was the first bout of vomiting she has had in 1 ½ years of chemo treatments. Lina came home on Tuesday in time to cast her absentee ballot for the local and state elections.

Last Thursday – 11/9 – the 2nd round of chemo went much more smoothly due to a change in anti-nausea pre-medication and the chemo-cocktail as well. Lina’s on a 2 x/week routine until the Lymphoma is gone from her spinal fluid, which will be checked each Monday starting 11/13 for approximately 4-8 weeks. Then the radiation will be scheduled.

Craig’s mom Ruth has been a great sport about becoming the #1 chauffeur, driving Lina here, there and everywhere.

As always we are extremely grateful to all of you for your love and friendship that helps us keep our chins up and one foot stepping in front of the other from day to day…. Your notes and companionship and calls and prayers that nourish our souls, the meals you organize and cook that nourish our bodies, the walks and play dates that our dog Jackson enjoys with you and your dogs, little gifts, rides and outings for Lina…suggestions of funny movies to see. It all adds up to an amazingly strong web of optimism and support.

Lina welcomes phone calls, e-mails and visitors.

We’ll keep you all better updated,

With thanks,

Craig, Lina, Chloe and Moriah

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Diagnosis… and the first 6-Months



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…


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.


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.


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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