Sunday, June 9th 2013

The last time I posted we had just emerged from a long and difficult winter. Peter was adjusting to the Vidaza treatments which had taken such a toll on him and was getting stronger. 

We are happy and very grateful to report Peter is feeling terrific, his blood values are good, he even played tennis for the first time when we visited friends at their retreat in Friendship, Maine last weekend. We enjoyed lazy days in that bucolic setting, something we could not have done just a few months ago when Peter was neutropenic. One of the many highlights was seeing a big field lit up by fireflies under a star filled sky on our evening walk. And then there were those prehistoric looking horseshoe crabs mating in a cove!

Tori and Ted, our hosts, planting tomatoes

Meadowsailing

I have been putting off telling you about another challenge we are facing.

Last January while we were struggling with Peter's issues, I was diagnosed with a benign tumor on my brain,  a rare condition called acoustic neuroma. I consulted with neurosurgeons and radiologists here and at Massachusetts General Hospital in Boston to help me decide what to do.

The neuroma has been growing for about 30 years and has reached a worrisome size, two and a half centimeters. I know now it wasn't  red wine that caused those balance issues I have had for a while! Other symptoms are diminished hearing in my right ear and tingling on the right side of the face.

Long story short, the thing needs to come out. I would have liked to have it done here, but since it is a rare tumor, I have decided to go to Boston where this kind of operation is done routinely.

Through a series of lucky circumstances I was connected with Dr. Fred Barker of MGH who has performed this surgery for the past 20 years, last year alone he removed 80 acoustic neuromas.

My surgery will be in 3 days, June 12th. It will last 6 to 8 hours. The hearing on my right ear will be lost. There is a less than 5% chance of facial paralysis on that side, something I hope won't happen! Incidentally, the hole in my scull will be covered with MRI compatible titanium mesh, how about that!

After a 3 to 5 day hospital stay and 4 to 6 weeks of recuperation at home, I should be able to resume a normal life style.

I have been preparing myself by going to Pilates 3 times a week, visits with my osteopath and acupuncturist and concentrating on remaining calm. We will go to Boston Tuesday afternoon already since I have to be at MGH at 5:30 Wednesday morning. Before we leave I have another session with my osteopath followed by a private Pilates in the morning.

Heidi is taking precious vacation time to be with Peter and me during my hospital stay. We saw Ciara and Ysanne last night and they have plans to cook up a storm while I am out of commission.

In parting I would like to ask you to please send healing thoughts my way on Wednesday. Peter will keep you updated as to my progress. Thank you all.

Thursday, April 11th 2013

Once the thick snow cover had melted away these hyacinths poked through the ground a few weeks ago only to be dumped on again in another blizzard. They persevered and bloom triumphantly on this drizzly morning. A bit like us!

We have gone through very rough times since our last post. Peter's second round of Vidaza left him weakened and short of breath with frighteningly low blood values for weeks at a time. Since his white blood cells were near zero and the neutrophils nonexistent, his immune system was shot. During his third round of Vidaza Peter suddenly developed a high fever and had to be admitted to Maine Med on March1st.

Two different kinds of broad spectrum antibiotics  as well as fluids were administered intravenously. When the fever spiked, Peter was given Tylenol which made him sweat profusely for hours, thankfully lowering the fever, but leaving him so weak that he could barely walk. Many tests were done to pinpoint the cause of the infection, but they never found anything specific, not an uncommon occurrence. It was very scary. I slept in Peter's room at the hospital, a comfort to both of us.

When Peter was released on March 5th he had to be supported when walking, the stairs were a problem.The slow process of recovery began. Frequent low grade fevers had to be monitored day and night. He was prescribed the strongest possible dose of oral antibiotics.

We spent many hours of many days getting blood and platelets, the record being one day at Gibson from 9AM until 7PM. Naturally Peter grew increasingly agitated and fed up with all the poking and probing.

Since he was constantly cold, Peter was happiest lying on the couch under a handwoven woolen blanket we had bought in the Atlas mountains of Morocco almost 2 1/2 years ago, sometimes listening to music but mostly just being. His appetite diminished, but we still managed to make our evening meals the candlelit ritual we enjoy. As always I filled the house with flowers. Peter did not want to go on living. We cried.

But then, ever so gradually, Peter regained his strength and while holding on to me was able to take little walks.

Due to the long hard winter we had this year most of our favorite hiking spots were off limits for Peter. They were either too icy or too hard to navigate due to the thick snow cover, so walks in the neighborhood were frequently the only option. It took all of my persuasive powers to cajole him to go out into the icy cold, but it was so important to at least get that bit of exercise. He talked wistfully about tennis and being on the slopes.

On March 12th Peter had a bone marrow biopsy. we waited anxiously for the results and about a week later were overjoyed to find out that the Vidaza is working. That means Peter's Leukemia is in check for now.

Since about three weeks Peter's blood values have climbed steadily to what is considered normal. It has been wonderful! A vacation of sorts. We have enjoyed going to friends for dinner, to concerts, the theater, restaurants and even entertaining. Peter is reading more again and has resumed going through and sorting out boxes of photographs and slides. Does anyone need slide carousels? We have loads.

We just returned from a walk at Gilsland Farm where we saw the first swallow of the season up high. Several groundhogs were busy making burrows and the air was filled with birdsong. We saw the willows in their yellow spring dresses, the swollen buds on trees and bushes, all sure signs of nature burgeoning into spring.

Peter and I were amazed that the magnificent crow, the Sentinel, had survived the winter unscathed with not a feather out of place. Last year, on July 1st to be exact, we watched the artists Donna Dodson and Andy Moerlen construct it from twigs which they had stained black. Mark loved crows and I sent the picture to him then.

This Saturday, April 13th, Mark would have been 50 years old. Like every year I would have sent him a Linzertorte.

I baked four of them this week. One we shipped to his son Vanja, two to his special friends in Seattle and one is for us. On Saturday we will watch a movie Maria made of Mark's last visit in Sweden and since she won't be here at least skype with her.

Peter started the fourth round of Vidaza last Monday, on April 8th . So far he is tolerating it remarkably well and we are keeping our fingers crossed that his blood values won't drop as drastically as the other times and that he does not have to go on antibiotics again.

Throughout the hard times we endured,  Heidi, Ron and the girls were a solace to us with their sweet and unwavering presence. Paris was on break from Syracuse University for a week and spent a good part of the time at our house. She and I managed to spend an afternoon making wrap bracelets. Fun!!!

I continued going to Pilates at least twice weekly which kept me sane and grounded.

We are deeply grateful to our dear neighbors who plowed us out each time another storm hit. And to Heidi and dear friends who brought all those delicious meals while we were at the hospital. They not only nourished our bodies but also our very souls. 

Since I had not posted on the blog for such a long time, we received mail as well as calls from concerned friends and I want to thank all of you for keeping us in your thoughts and prayers. 

Love carries and sustains us as we continue on our journey. 

In closing some pictures Heidi took of us at a restaurant a few weeks ago.

Sending love, Peter and Jutta

Monday, January 15th 2013

HAPPY NEW YEAR !

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.

Thankfully Peter continues to take immense pleasure in having a good meal. Since he often craves certain dishes, I have gotten into the habit of asking him what he would like to eat for dinner that night. Here is what we ate a couple of evenings ago........

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!

Monday, November 5th

The phone rang at 7:15 AM on October 11th. Michael, Mark's best friend in Seattle, called to tell us that Mark had died the evening before. Peter, screaming in disbelief, called Mark's name over and over again. We clung to each other as grief washed over us relentlessly.

Mark and his Maria were on Lopez Island when Mark passed away. Michael and Bret had offered their beautiful retreat to them for a much needed 10 day vacation. With no internet, no regular phone service, it was one of Mark's favorite places and he had called Michael on October 10th to tell him it had been the happiest week of his life. To show their appreciation, Mark and Maria washed the windows. Doing so Mark fell off the ladder but was able to walk over to a chair with view of the ocean. A short time later he died. Maria told us that the last time she looked into his eyes the sunset was reflected in them.

Mark had an extremely low platelet count due to his health issues. His blood was not able to coagulate and he died of internal bleeding.

We got back from Seattle a week ago where we spent 2 weeks with Vanja, our 21 year old grandson, and Maria. Heidi came for part of the time. Her loving presence was of immeasurable importance to all of us as we tried to move through the days.

As the executor of the will Peter was extremely busy the whole time making sure that Vanja's affairs would be in order before we returned to Maine.  Needless to say it was hard work since he often was overcome with grief.

Mark had an unusually large circle of very close friends. They were stunned and grieving deeply, reaching out to us in many loving ways. All of them told us that Mark had been the most generous person they had ever met. One of the labs at Tideworks will from now on be called Mark Graf Lab or some such in appreciation of Mark's considerable contribution to the company. They will send us a picture once the plaque is placed on the door.

Peter and I are trying to come to terms with the inevitable. We are grateful to have each other, to be in the stillness of our home. We talk, we cry, we try to accept, we read the many thoughtful and loving letters and e-mails from friends and family near and far.

Our sweet baby.....

Heidi is back at her demanding job. I don't know how she copes. Time and again we look at a photo album together that Peter made for Mark. It was a gift for his 20th birthday, a review of Mark's life up to that point.  We smile tenderly at snippets of his life, our life together. She has mementos which she treasures. Heidi, Ron and the girls come over for dinners or we go there, taking comfort in being together.

Maria took a part of Mark's ashes back to Sweden. She made a memory quilt and put it in the woods by a juniper Mark particularly liked, at a spot that was special to both of them.

Vanja is packing up Mark's incredible collections of lucite, curios and art and putting everything into storage for the time being since he will be selling the house. Vanja is planning to come to Maine for Thanksgiving. Our hearts go out to him as he tries to accept his big loss and wish we wouldn't live so far away. Mark and he had a very close relationship.

........in Minneapolis, 2 months old

19 years old in Duebendorf

Mark and Maria on the ferry to Lopez

At the retreat on Lopez. Mark's 50th birthday would have been April13th, 2013

It isn't easy to find words to express our grief. Our memories of Mark are rich, our sorrow too deep.

Easter Sunday, April 8th 2012, the last time we were together with Mark. Peter had come home from the hospital the week before

This past Friday we did have some good news. Peter's biopsy results show that he is clean! we celebrated with a big fat Porterhouse steak from the grill and a Grand Crus '84 Saint Emillion. Peter's next bone marrow biopsy won't be until next February. I wish we could tell Mark..................

Sunday, August 12th

Two weeks ago, on July 30th, Peter and I had a quiet celebration for our 52nd wedding anniversary. Peter was still very weak and neutropenic, so we kept it simple.

The day began with us exchanging cards we had made for each other. To the left is Peter's.

The picture was taken at the reception in the basement of the church where we got married. To say the least, it was a simple wedding, not at all like what seems to be the norm today. But wait, there seems to be a change in the air! In today's Sunday Times there is an article about a trend away from $28000 weddings. Did we start that?











http://www.nytimes.com/2012/08/12/fashion/the-reinvented-wedding-smaller-and-cheaper.html?ref=fashion

The card I made for Peter is a collage of pictures taken recently.

As Peter told you in his posting we got the fantastic news a week ago that he won't have to go in for round 4. A few days later we had a family celebration of this momentous news in the garden of a favorite restaurant, Caiola's.

Peter has been improving steadily. He is no longer neutropenic, hasn't been for almost a week and is starting to resume a more normal lifestyle. Last night we attended a wonderful concert of the Portland Chamber Music Festival which is in its 19th season and tonight we are going to friends for dinner.

We will keep you posted on any further news. Peter will be seeing Dr. Boyd on the 20th and has compiled a long list of questions, some of which she might be able to answer.

We want to thank you again for accompanying us since February when Peter was first diagnosed with AML and when he started the rigorous treatment which thankfully brought him into remission. Your loving support and encouragement has helped Peter and myself to get through this very difficult and demanding time in our lives. We both literally feel surrounded by a circle of loving arms. May your kindnesses be rewarded manyfold.

Saturday, August 4th

Normally I don’t like to go shopping but today I just had the most exciting shopping experience ever and I want to share it with you.

Here it goes:
As I approached the fruit display at the local supermarket I noticed Dr. Boyd putting some raspberries into her basket and kiddingly told her that she should buy fruit and vegetables at the local farmers market instead of the supermarket. She made some excuse and then told me that late on Friday she had consulted with Dr. DeAngelo at Dana Farber and they came to the conclusion that I do not have to go through a 4^th Chemo treatment since my bone marrow has responded so well to the previous ones. She scheduled an appointment to see her on August 20^th to discuss the future.

Dr. Boyd is not the kissing type, actually not even the type for unsolicited hugs so instead of doing that, I just let out what was probably pretty close to a Swiss Yodel, startling shoppers and then rushed home to share the wonderful news with Jutta. 

Jutta will update the blog over the weekend but I did want to share the good news with you right away.

Thursday, July 26th

Monday's blood test showed that Peter's platelet count was down to 5000, alarmingly low. As a refresher, a "normal" person has a platelet count of 150000 +. Peter received a bag of platelets immediately and his count went up to 26000 by Wednesday.

By now we are seasoned hands and  don't get overly alarmed when the blood counts spiral downward. We know what to expect. We even hope for a low count because it tells us that the chemo has done its job and has destroyed the bone marrow. By now we know that we'll be in a holding pattern until Peter's neutrophils get up to the desired levels again. He is taking antibiotics to ward off infections in this vulnerable time.

Jarrod from Rosemont Market had a special surprise for us today....lamb tenderloins. In spite of being wiped, Peter rallied and fired up the grill for this treat, grilling the meat to perfection alongside  local vegetables.

Our friends Bruce and Landis had arranged to have a case of very special assorted wines delivered from Rosemont Market today. Peter and I enjoyed pairing one of the wines, a full bodied Austrian red, with the meal. Yum! To Peter's delight Dr. Boyd feels it is perfectly wonderful for him to drink a glass of wine with his meals!

Since Peter is neutropenic [no white blood cells] since Monday, he tires easily and is out of breath at the slightest exertion. We keep visitors restricted to family, although even with them kisses are strictly forbidden.

Peter being Peter, he tackles this low point remarkably well, taking short walks, puttering around the garden and helping me with this and that around the house. I am in awe!

He also enjoys the frequent phone calls from his sons, Mark and Hai. Marie, his tart angel, and Jenepher, our neighbor across the street, have sweetened his life with their baked delicacies. Cards have trickled in, a book that an old friend from Deer Isle wrote.....Waltzing With Bracey...sent by Mary and Richard, e-mails and letters, all of this a balm in this hard time in our lives. And not to forget your regular posts on our blog which are deeply appreciated by both of us