Bahrman Bulletin

Celebrate life, abundant in love and teeming with laughter.

Christmas, and the New Year celebration which follows, is my favorite time of year. A time to focus on family and friends, charity and giving, renewal and reflection.

This year the holiday had greater poignancy for me than ever before. It was a challenging year for many, and we were no exception. The loss of Amy’s grandfather “Buck” and my aunt Fern brought great sadness. My diagnosis with Chronic Myelogenous Leukemia (CML) was, at times, physically burdensome and emotionally overwhelming. However, despite (and in some instances because of) these challenges, we also experienced great joy.

• The continual delight of watching our girls learn, grow and blossom.
• The outpouring of love and support from you, our family and friends, as I fight CML.
• The blessing of time with our family, together for a week in Leavenworth, Washington.
• The satisfaction of watching Amy complete her first marathon and successfully fundraise for the Leukemia and Lymphoma Society.
• The pleasure of exploring the beauty of Ireland together with Amy and her aunt Suzanne.
• The inspiration of watching our friends and family struggle and overcome their own personal difficulties, finding new hope and peace.

These are the simple gifts for which I am thankful this year. And I’m most thankful for the gift of life given to me by the doctors, patients, researchers and donors who made my current treatment for CML possible. Given my great fortune, it’s impossible not to laugh heartedly and love generously, embracing every day of life with which I’ve been blessed.

So this holiday season, I hope you find time to reflect on and appreciate the everyday blessings in your own life.

We wish you and your family the simple gifts of life, love and laughter.

On Saturday Becca invited several friends, including our exchange student Eleonor, over for tea. Becca made scrumptious, flakey scones (that were gluten-free, although you’d never know!), a fruit salad, and hummus dip with vegetables. There was not a crumb left, testament to a wonderful cook and hostess.

We enjoyed dinner out with Eleonor after the party. We asked her what was most unexpected about living here. As we gobbled down our appetizers, she said the amount of snacks and candy we consume was what most surprised her. Here, people are always eating. Snacks are not common in Sweden. And there, sweets are reserved for Saturday, known as candy day. If people eat sweets on a day other than Saturday, it is for a celebration like a birthday.

Eleonor’s family arrives tonight. She is thrilled to see them, and we are excited to meet them as well. Her brother, she mentioned, is looking forward to grabbing a spoon and sitting down with a half-gallon of ice-cream. Apparently Hollywood has inspired him…depressed women sitting around drowning their sorrows in a gallon of ice-cream may be a dream come true for the fourteen year old. As long as it is Saturday, I suppose!

There isn’t any season quite like this one. It’s dark by 4:30, it’s bleak and cold outside, yet lightness and warmth envelope us inside. As we prepare gifts for those little children closest to us, we also take time to recognize the gifts we’ve received. This year has brought many:

• A devoted and loving grandmother willing to spend 3 months with Chiara so I could finish my degree (and come back for two weeks in the fall while we traveled to Ireland!)
• A wonderful two weeks with Tom in Ireland
• Talented physicians and Gleevec and the good news of a cytogenetic response
• A beautiful, happy little girl
• A bright “big” girl with plans for college.

If that weren’t enough, we were blessed with a visit from my family for Thanksgiving. A weekend filled with joyous traditions and activities (including gingerbread house making and cyclocross)…

We’ve been given so many gifts! Thank you to everyone who has shared with us this year!

Marvelous words! I had my 6 month follow-up appointment with Dr. Michael Mauro at OHSU today, and the news was very good.

In case you’re a little behind the information curve, I was diagnosed with Chronic Myelogenous Leukemia (CML) in May 2009. A shocking diagnosis, given the rarity of the disease in people my age. And extremely concerning, given the apparent advanced stage of my disease upon diagnosis. However, quite fortunate in certain respects, because CML is one of the most treatable forms of Leukemia and the phase of my disease was less advanced than initially feared. So, I began the standard regiment for people with chronic phase CML–an oral drug commonly known as Gleevec.

At the three month mark, still in some discomfort from the disease and the side effects of the drug, I had a round of testing which determined I’d achieved a “suboptimal response.” Stressful, but we kept our hopes up and increased the dosage of Gleevec.

November 9 was the six month mark–from the date of initial diagnosis. And I went in for another round of testing. Namely, PCR, FISH and cytogenetic testing.

Today, completely free of pain and slowly regaining my physical stamina, we received the results of those tests. Please forgive me while I bore you with a few details…

The four general stages of treatment are: hematologic response, cytogenetic response, major molecular response and complete molecular response. A hematologic response means that blood cell counts have normalized–most patients achieve a hematologic response on Gleevec. A cytogenetic response means there are no Leukemic cells (Ph+ cells) that can be detected by the FISH and cytogenetic tests. PCR is a very sensitive test that looks for Ph+ cells (the trademark of CML) in the blood. When initially diagnosed, the average patient has a 100 (int’l scaled) score on the PCR test. That score usually drops to around a 1.0 when the patient achieves a complete cytogenetic response. And when the PCR score drops to 0.1, the patient is deemed to have achieved a major molecular response. Achieving a major molecular response within the first 18 months of treatment is important, because most of the patients that achieve that benchmark remain “free from progression” to more accelerated forms of the disease five years later. (Gleevec is still a relatively new drug, so we don’t have a lot of data beyond 5 years out.) A complete molecular response usually means a score less than 0.01, a level below what the lab is able to detect in the patient’s blood–what is called “remission” in cancer terminology. Unfortunately, Gleevec is not a “cure,” so patients who are successful on the drug usually remain on the drug indefinitely to stay in remission.

My PCR score on 5/20/2009 was 100–coincidently, perfectly aligned with the international scale. My PCR score on 8/10/2009 was a disappointing 97. My PCR score on 11/9/2009 was an exhilarating 0.49. The results of the FISH and cytogenetic testing, I obtained today, confirmed no detectable levels of Ph+ cells in my marrow, meaning that I’ve achieved a complete cytogenetic response and am well on my way to a major molecular response. Ya-hoo!

Thanks for all of your thoughts and prayers, they’ve meant a lot to Amy and me, and I’m sure helped achieve this response. Please keep them coming…

My doctors and I remain very optimistic about my prospects for further treatment on the same dosage of Gleevec. And I hope to report back even better news in the next six months of treatment.

Every day is a new adventure in toddler-hood. Chiara is full of tricks, from repeating every word one says to climbing out of her crib. (Fortunately, she hasn’t tried this new trick without mommy standing near enough to catch her!) Just before nap-time today, I asked Chiara to pick a book to read. She took her little baby doll over to the book shelf and talked to the baby doll, asking her to get the book (I am assuming…her quiet babbling to the doll was a little challenging to understand). Then, she took the doll’s arm and reached it up next to the book spines, showing her how to pick a book, yet without actually retrieving one. Once again, she guided the doll’s arm to the spine of a book and pulled it down (courtesy of help from Chiara). So cute to see her teaching her little doll. (Not to mention pretty smart…her antics got her one extra book for the doll, prolonging the time before nap!) One just hopes she is as helpful when real people are involved!