Friday, July 5th 2013

This is where I hang out a good part of the day since coming home on June 26th. Missed the peonies and the spectacular first flush of roses, but arrived in time to see my beloved grey dogwood in full bloom.

The sutures were removed last Tuesday, July 2nd by Dr. Reynolds, my doctor here, and I was allowed to wash my hair for the first time in three weeks on July 4th! 

Heidi and Ron invited us over for a celebratory barbecue of hamburgers, hot dogs, grilled vegetables, corn, tomato / mozzarella salad and mixed green salad fresh from their garden.

For dessert we enjoyed a family favorite Ciara, Ysanne and I had made the day before. While the adults lingered after dinner the twins joined friends to watch the fireworks on Munjoy Hill in Portland.

I am getting steadier on my feet every day. Heidi arranged visits by therapists and a nurse to help me back to normal. She and friends have been making delicious dinners for us, filling the house with flowers and a lot of love. Peter watches me like a hawk, waiting on me hand and foot starting with tea in bed every morning!

Unfortunately I ended up having two surgeries. The first one on June 12th took 7 hours. Dr. Barker and his assistant removed an egg sized piece of skull to get to the acoustic neuroma. They took out most of it and I was overjoyed that there was no paralysis on the right side of my face, thanking a tired Dr. Barker when he came to see me in the ICU. 

He told us that there was some comic relief in the

operating room. Apparently commands to wiggle my toes after surgery were met with a categorical: "That is not going to happen" for over one hour. Since I was speaking German, Dr. Barker had to employ a virtual translator to decipher my babbling.

After spending the first night in ICU, I was transferred to a beautifully furnished room with a sweeping view of Beacon Hill and beyond. Lucky me since it became my home for two whole weeks.

Cerebral  fluid started dripping out of my right nostril on the second day after surgery. They did a spinal tap and I had to lie prone for several days as they carefully calibrated the drainage, finally deciding to reopen the 12 centimeter long scar on Friday, the 21st of June because of a hairline crack that was not going to close. The surgery took only about 2 hours this time, but there was considerable pain for a couple of days. I will spare you further details but want to let you know that I now have MRI compatible titanium mesh in my head which will eventually fuse with my skull. How about that!

I am filled with deep thanks especially to Heidi and Peter who were by my side during my hospital stay. Heidi sacrificed her vacation and was invaluable in every way. She advocated for me arriving before 6 every morning so she would not miss the neurosurgeon team.

Ron brought Ciara and Ysanne down to Boston for an afternoon, a breath of fresh air. Peter and Mary came to visit.

And dear Mary came back down and stayed with me for two days so Peter and Heidi could go back to Portland to make all necessary arrangements for my return. While with me, Mary selected a delicious multi course dinner at Enoteca, a great restaurant on Charles Street. Not only that, she bought me a most elegant kimono wrap to wear for the occasion. I disappointed her on that front because I didn't have enough energy to both dress up and eat, having to opt for the latter! She lovingly understood.

Peter and Heidi drove back down to Boston on the 26th leaving at 8 AM. After making sure I had enough pain medication to tide me over, they packed me in the car where I promptly fell asleep. Peter gently chauffeured us back.  That first night Ysanne slept on a cot by my side so Peter could get a good nights sleep in the guest room. She gave me my meds at midnight and helped me to the bathroom a couple of times that night.

While at the hospital, reading ANIMAL VEGETABLE MIRACLE by Barbara Kingsolver, my thoughts turned to our tradition of making jams. Each year the girls and I get together starting with strawberry season to make enough jam to last us all winter and to share with friends.

On July 3rd Peter picked up 20 pounds of the most luscious local strawberries at Rosemont market. We sat outside stemming them while the jars were sterilizing and then Ciara and Ysanne, with a little guidance from Oma, set about making 20 jars of strawberry jam. Heidi had raided her rhubarb patch and they made another 20 jars of yummy strawberry / rhubarb jam.

With the foam they ladled off while the jams were boiling, we made dessert for the next day, a family favorite in the picture above. The recipe goes way back to when Mark was born  in Minneapolis and is the creation of my dear friend Gisela who lives in Germany now.

In closing I do want to express my gratitude for the care I got at MGH. The smart, caring and loving nurses kept me confident that I would get well while taking care of my every need in a cheerful and personal manner. The neurosurgeons answered our many questions full of compassion, making what were at times difficult decisions. The cleaning personal kept everything spotless with a big smile. I was deeply moved by the life stories they all shared and by their fervent wish I would be able to go home soon.

I also thank all of you for your prayers, your cards, calls, letters and e-mails, your flowers and the sustenance I received. This is what carried me and kept me calm. We are so lucky in many ways.

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!