During the Holidays we deliver fragrant, freshly baked Zopf to our neighbors. This year was no exception as we clung to our family traditions in a difficult time.
As he does every year, Peter decorated the Christmas tree on December 24th. It was particularly beautiful this year. On a blustery sleety day a couple of weeks earlier, the whole family had gone to a farm to select and cut the tree that met everyone's approval. As always we gathered at our house on Christmas Eve and again on Christmas Day. We ate, we sang, we opened beautiful presents one at the time as everyone looked on. It was good to be together.
The Holiday season was overshadowed for the entire family by the loss of our dear Mark in October. Condolence letters arrived and many Christmas cards. We read them to each other every evening after dinner, speaking of the people who sent them, smiling, remembering, as tears ran down our cheeks at times. We didn't send out cards this year. Peter could not bring himself to write the Graf - o - Gram.
I am so sorry to have to tell you that we got bad news early December. The chromosome which caused Peter's AML [acute myeloid leukemia] has come back and another one has joined it.
We went down to Dana Farber in Boston to consult with Dr. Deangelo about taking a chemo drug called Vidaza. It is is not curative but will hold the leukemia at bay for 2 to 6 years, so we hope. Vidaza is injected for 7 consecutive days in a 28 day cycle. The first 4 to 6 months are the roughest with blood counts descending to scary levels after 10 to 14 days before going up again. The good part is that Peter can get the treatments as an outpatient.
While we were at Dana Farber we also spoke with the bone marrow transplant specialist, Dr. Soiffer. Both he and Dr. Deangelo agreed that although Peter would normally not be a candidate due to his age [78], they would make an exception because of his excellent health and fitness. We decided against that option though since the success rate is around 15% to 30% with several months of convalescence.
Peter started with Vidaza right after Christmas, on December 27th. That morning, in a small operation, a mediport was installed in his upper chest to take blood [ twice a week] and administer premeds. The Vidaza is injected in Peter's thigh or abdomen.
The first round of Vidaza has been rough on Peter. We believe that the steroids given with the premeds were the major cause of a lot of discomfort and mood swings. After consulting with Dr. Boyd Peter has decided not to take them anymore. Dr. Boyd said they are given to avoid "shaking chills" or hives among other things.
Peter has had to go in for platelets twice within the last week. We hope that his blood values will go up soon so it will be safe to have a social life again, but for the moment we are very careful. We did go to the movies yesterday to see LINCOLN, going at noon to avoid the crowds.
Belgian Endive, radishes and scallions sprinkled with creamy lemon dressing
Rack of lamb marinated with rosemary, thyme, garlic, salt, pepper and olive oil and roasted in a hot oven
Accompanied by steamed broccoli tossed in olive oil flavored with garlic as well as cherry tomatoes stuffed with breadcrumbs, basil and more garlic
Living in the moment has become our mantra. Of course we are not always successful, but we try. We phantasize about taking a trip to the Alsace this spring to gorge on white asparagus, to visit friends and family. We'll see. For now we are happy to be together. As we wake up in the morning Peter holds me close and calls me his best medicine. And he is mine!
6 comments:
Oh dear ones, we are so sorry about this hard news. But if this new drug buys you some time, it is perfectly possible that a new one now moving through clinical trials will become available when you need it. Meanwhile, you seem to be making some very wise choices --no bone marrow transplant, yes, drinking in each moment, yes, being one another's best medicine -- yes, yes yes!
Love, David and Joan
You have one another. You have Heidi, Ron and your three glorious grandchildren. This news about Peter's AML is so unfair, but as before, you are both celebrating and savoring every moment in one another's company. It's no small thing to love so deeply and to have that love returned ten-fold. We send you our love also.
Your,
Monica and Gregg
I just saw that I said "three" glorious grandchildren. Of course I mean "four"! Forgive me Vanya!
I want to echo Monica and Gregg: It is no small thing to love so deeply — This is what I experience from you two for all these years and you continue to model this for me. I am so grateful to share in your lives. I continue to send you light and love.
We want you to know we are thinking of you, and are so impressed by your shared spirit. You are two very gutsy people, and we are proud to know you, call you friends. We want to learn when you will be back home in Maine so we can be in touch with you there. Meanwhile we, too, imagine you taking a most beautiful and healing trip to Alsace this spring. Hold that thought, and each other tightly. You are in our hearts always.
Love, Jackie and Marty
Jutta,
This is such an incredibly beautiful posting despite the very poignantly sad news.
Andrew and I are so very distressed with a reemergence of the AML chromosome however I am relieved you opted against a BMT.
It takes immense courage to discard the possibilities offered in that treatment, but with the % so small compared to the definite challenges, I applaud your decision. Still it must be so hard for both of you and it sounds the vidaza is not without difficulties as well. At least you have the port Peter which can save your veins a little.
Your photos are ravishing and your presentation of the events reads as if you were speaking it. You so beautifully capture a small composite snapshot of what you are going through and how you cope with the events of your present life.
It really is amazing and so generous that you share it with us here on this site.
good luck with your numbers- we hope they climb soon and the flu stays away from your home.
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