Care Giving: Perspectives

Martijn rests on Thursday in his study on his day bed 

reading "Night Train to Lisbon".

Nurse Ans wraps to contain the thrombosis

His
It was a horrific week for Martijn. It began on Saturday, May 17th when his right leg swelled painfully to twice its size. This swelling was different than that associated with the lymph symptoms, so we called Dr. Bom that evening. He responded quickly assessing the situation as thrombosis and calling a specialist with the symptoms and medical history to confirm his suspicions. Normally a patient would go to hospital for tests, but given Martijn’s condition everyone agreed to proceed. Dr. Bom ordered injections of blood thinner, which he administered that evening, and wrapping material used to treat thrombosis. The next day our old home care team from ‘Green Cross’ began their work with us as they had post operatively last fall. Nurse Ans arrived Sunday to wrap carefully Martijn’s affected leg and continue with the injections. Monday one nurse bathed him while another team checked the wrapping and yet another came for the now nightly injections. But other complications surfaced: constipation and urination problems. Dr. Bom ordered stool softeners for the former and what is called a condom catheter for the latter. But by Thursday Martijn’s abdomen was painfully distended in spite of the fact that the thrombosis swelling in his leg was decreasing. Thursday evening I asked Dr. Bom to come to check his abdomen – his renewed assessment was bladder blockage. Again the night pharmacy delivered and after a ‘real’ catheterization Martijn began to flow again. What a difference – by Friday his bladder was functioning as well as his bowels. Appetite returned. His color and energy returned. And for the time being we feel that he has stabilized. During this time of distress Martijn kept his constant centered disposition, but the episode has taken a great toll on his energy.

Mine
And on mine. During this latest period the cumulative care giving has taken a toll on my energy. I have managed, up until now, to regroup after previous roller coaster effects, but not this time. Even with my brother-in-law, Janus, agreeing to come to administer to Martijn all day this past Wednesday so that I could attend a mixed business and pleasure team-building outing with my Knowledge Management colleagues from ECDPM, I have slipped a notch. Thursday I met with Alied van der Aa, my therapist, and we agreed that I would begin a more formal and rigorous attempt to schedule extra help for me. While Green Cross takes good medical care of Martijn, I still must be here to change his wound bandages twice a day (the tumor in his groin that is external), empty his catheter bag regularly, make and serve breakfast, lunch and dinner every day, put on and take off his clothing twice a day, and direct the various nurses on where to find what. On top of this, since we have no Dutch benefits, I have tried to continue to work, although mostly from home. Nevertheless, you can imagine the stress and strain to focus. Hopefully, this week I will work with Alied to turn the tide. Brother-in-law, Janus and my sister-in-law, Elly, will rotate taking one full day a week to be here with their brother. My mother-in-law already comes on Sundays brining home cooking. Maurice Schoffelen has been coming on Wednesday evenings regularly. Now I will try to find others to cook at least five days a week, taking at least that pressure off of me.

Physical pressure is only a part of it, though. It feels as if I’ve been a social outcast for a very long time now. I, who typically am so socially inclined, have been incredibly isolated for almost 16 months. It may seem we’ve had many guests but please don’t confuse this with leading a happy, balanced social life. I hardly visit outside the house and when I do I mostly want to return to be with Martijn. It is impossible to feel good about outside events when my heart is breaking. Which is the other part of this ordeal – how very sad it is to see your beloved in pain and literally breaking down on a daily basis. This sense of loss is palpable. The good news is that I’m very aware of my grief and mourning – not stuffing feelings or hiding from the pain. Nor am I wallowing in it. I know and recognize the loss I’m suffering for just what it is – a monumental loss. My life as we lived it is gone, and has been so for over a year.

Ours
And, the life we anticipated is gone as well. No retirement together living in this soft green landscape and traveling the world. No leisure time with family and friends, watching each other grow old. No more quiet evenings just hanging out, ribbiting and croaking for joy. No more back scratches or walks along the River Meuse.

What is here now, though, is an existence that is as sweet as it is bitter, maybe sweeter than that.

I have been given a rare gift, to spend Martijn’s final days together, hopefully providing him what he wants and needs. I have the fortunate circumstances where I can be with my sweet philosopher frog in our own home, in his own hometown, surrounded by his loving family with his longest-term friends nearby. We have loving and caring friends, my angels, who fly in from here and there, in person and virtually, to care for both of us as best they can. Thanks to the Toon Hermans Huis, we have learned of many resources available to us including finding Dr. Bom, Alied and others. And, although I am scraping the bottom of my savings, at least my years of work have allowed me to put away for a rainy day. So, in spite of the fact that we have absolutely no benefits from the Dutch government, we still have lovely home and can afford the medical insurance that provides for us in this time of dire need. And, as long as I can continue, I have work.

It still remains impossible to conceive that Martijn will not walk among us. His strength of spirit and his ongoing physical prowess in the face of so much deterioration speaks volumes about the care he took of his body, mind and spirit before this cancer felled him. Nothing will replace the love, gentleness, the spark that our relationship brings me – but I will always know we walked completely together in sickness and health, in joy and sadness, ‘til death do us part.

Complications

Standing strong together, Mother's Day, May 11, 2008 in our home.

Martijn reads in our outer courtyard on Monday, May 5th.

Yesterday, May 17th,  Martijn suffered a ‘setback’ in his well being. He has developed a painful thrombosis – an anticipated side effect of his increasing immobility. We had an emergency visit by our lovely doctor, Dr. Bom, last night. Martijn will now be receiving injections to thin his blood and have his leg wrapped. This will decrease his mobility but hopefully this will only be a temporary setback with the proper treatment and rest.

Philadelphia Brigade Brightens My Grief

Sisters Kate & Alex Tasch arrive in Maastricht on Friday, May 9, 2008, bringing their special brand of comfort, care and fun!

Busted? No. Great friend Maurice Schoffelen isn't locking the girls up, but merely offering his back of the van transport as Alex and Kate head to our friend Jacqueline Braun's bed & breakfast located a tad too far for walking from our home in Centre Ceramique. We've decided it is best for our guests not to stay with us at this time to preserve the most peace and quiet for Martijn and me.

On Saturday, May 10th, Martijn accepted an invitation to spend a few hours at his mother's cabin located 20 minutes away in Lanaken, Belgium by car. Maurice thought it would be nice to show K&A nearby Valkenburg, Limberg's equivalent of New Jersey's Wildwood. Very touristy. We walked the town, viewed the ruins, rode the ski lift to the tower on the hill and ate fattening 'biter balen" the local answer to Philly cheesesteaks. Heavy on calories and taste!

Alex, Maurice and Kate pick up sticks on a short hike through Valkenburg's woods. Total twiggies.

When Kate and Alex wrote that they would like to visit Martijn and me I felt overwhelmed with gratitude. You see, the Tasch family was my first 'official' adopted family. Their father, Peter, became my first 'real' employer in 1969, when, as a work-study student at Temple University I became the Office Administrator for the scholarly journal, The Scriblerian, which Peter edited and managed with two other colleagues. I worked for Peter for three years, during which time his wife, Alison, who also taught in Temple's English department where I was a student, and their three children, Jeremy, Kate and Alex, became my first 'family' of choice. It is a relationship I've maintained and cherished over the past 40 years. In fact, when I ran my Philadelphia Public Relations Firm, Ingram & Picker, Alex became one of our first intern's, making the cycle full.

Their visit opened a window of my soul letting some light into the darkness that currently dwells there. My grief of late has lodged deep and wide. Even as Martijn proves his mettle by his heroic ability to tough out his pain and keep up his overwhelming good humour, even as he labors to do the small things for himself he is able to do, I mourn my upcoming loss. Just this determination, just this magic display of character, though also intended to help me in my daily routines by keeping independent as long as he can, seems to intensify my impending sense of loss. I WILL MISS MARTIJN ENTIRELY BECAUSE OF HIS SPIRIT. While I know the 'ruling' zen wisdom is to accept each day we still have and to cherish it, I admit to you that I mostly dwell in deep despair at my own sense of loss. And, I am not ashamed nor remorseful about this. It is what I feel. I am neither wallowing in sadness nor looking for sympathy - only marking my own reality to share with you.

Mostly when I'm with Martijn, I do not feel this despair. It is only when I'm alone - when he's sleeping or resting upstairs or I'm in the shower or washing up dishes. Also, when I'm out and about Maastricht. Maastricht is Martijn for me. 

So, it was with supreme gratitude that I found being out and about with Kate and Alex, along with our dear steady 'tour guide' Maurice, that I felt lighter for the first time in a long while. Sharing our long and mutual Philadelphia-based history was a panacea for my ills. Identifying landmarks like the Wissahickon Trail in the Germantown section of Philly where we were neighbors for many years, or sharing snatches of history like the big English Department parties hosted by their parents in my carefree student days, filled me with a sweet succor of long term friendship. We didn't run out of stories or reminiscences during the entire weekend of their visit. And the icing on the cake was spending Mother's Day with two young women who feel like my own daughters.

There is much more to tell about Kate and Alex and the wonderful Tasch family. Like Kate's own role as caretaker for her partner, Michele during her frightening bouts with leukemia, or Alex's recent scare with a burst appendix, or the time Martijn and I stayed in a funny, funky Manhattan apartment of Alex's former boss, or the huge party hosted by Peter and Alison for me when Temple University honored me with a distinguish humanities award, or Peter an Alison's current struggle with the Parkinson's disease that is ravaging their lives. So much history and so much love.

So, I have found a lasting 'afterburn' from their visit that is helping me back on track to enjoy Martijn's enduring love and company now. What a great gift. 

Poignant Plans

My American 'brothers', David Fey & Michael Putman traveled to Maastricht in late April to offer support and love. They stayed with us for a few days before heading to Amsterdam and back home to Minneapolis. It was a most meaningful visit. David stayed with me for a week when Martijn underwent surgery in October; Michael actually got his very passport and made his very first visit outside North American for this occasion. 

Father Carel van Tulder, a retired Jesuit priest, will facilitate the memorial service for Martijn. We've been meeting regularly. Carel is comforting and grounding for us. He is open to our ideas for the service and says he is amazed at how centered we seem to be. We are grateful that he is in our circle. 

Werner, Martijn's dear friend from university days, and his partner Henk, spend some time with us a few weeks back.

Therese and Rob Frank enjoy a spot of sun in our courtyard. They go back to Martijn's university days, the same time he knew Werner.

It has been an emotionally draining time for me. Martijn, thankfully, continues to be comfortable, but in the past weeks we've begun to finalize the plans for the memorial service, funeral, and cemetery. In each case there has been a  bittersweet poignancy in the activities.

Martijn and I treat each subject with love and respect, even making jokes and being lighthearted. And the various individuals, like Father van Tulder, who are involved fill my heart with gratitude. 

Yesterday we chose the location for the memorial service, which will be the stunning St. Jan's Kerk in the literal middle of Maastricht - its center square, the Vrijthof. Both Martijn and I were pleased to learn it is available and has all the features we wanted - central location, beautiful interior, ample seating and excellent musical facilities. Our beloved friend, Herman Rouw, has agreed to play and organize the music. Herman is world class conductor, composer and pianist, but most important, he is our dear friend. He has also agreed to accompany one of my newer friends, Pia Brand, who works with me at ECDPM. Pia has kindly offered to sing the moving song, "Beloved Wife", by Natalie Merchant, a tribute of one spouse to the other. Martijn and I love this song and have agreed it will end the service. 

We also selected the location where the Dutch coffee table will take place - the fortress that sits atop Maastricht. This is the typical gathering here that follows the funeral. The church and this fort are places Martijn and I love and so have a lot of meaning. Yesterday we also selected the coffin and today, our dear friend Maurice Schoffelen accompanied me as I drove in my new car share to the cemetery that Martijn asked me to check. It is where his grandfather Martijn Mullens rests. By coincidence the caretaker was available and I was able to secure the spot to the right of his grandfather and grandmother's gravesite. Our good friend, Frank Koekenbaker, "Cookie", visited with Martijn while we made these arrangements.

As you may imagine these are details that must be attended to. And while we are both grateful that Martijn can make the arrangements as he prefers, it has taken all of my equilibrium to do these things with grace. 

Tonight, Ursula stopped by with Martijn's favorite newspapers and some special treats from her native Blackforest in Germany, and the wonderful owners of our favorite Maastricht restaurant, Le Courage, prepared and delivered a lovely dinner requested by Martijn - sweetbreads with grilled potatoes and veggies. We feasted as we often do, watching the Australian television series, "McLeod's Daughters". Our poignant plans now underway, hopefully we can enjoy each day that we have left. 

The Two of Us

The two of us, still crazy in love, by the River Muse, Tuesday,  April 15, 2008.

Martijn and I honor our  vows to love, honor and cherish each other, in sickness and health....I am heartened by my husband's strength of character, intellect and spirit. His pain from the growing tumors is increasing, yet he cherishes each new day for what it brings. Still able to walk, albeit very very slowly, we try to journey the three (now long) blocks to our spot by the river. Martijn likes to make his own breakfast, since standing gives him relief from the increasing pain of sitting or even laying on his back. Our doctor, Maurice Bom, typically makes a house call twice a week; his palliative nurse, Vincent Janssen, comes also twice weekly. They are working with Martijn on a pain medication dose that fits his need to stay fully lucid and clear. One of our dear neighbors, Dirk Peek, happens to have been Martijn's anathestiologist during his surgery, and is one of the leaders of the pain clinic at the hospital. On his own time he checked in with us this weekend assuring us that he is available to collaborate with Maurice Bom should Martijn need additional advice. We also are meeting with a wonderful progressive retired priest, Carel van Tulden, as we plan Martijn's memorial service, which will truly be a celebration of his life.

But I am in a different kind of pain for which no medication can help. It is a pain I acknowledge and endure, knowing full well that I am already in mourning a loss of a love that will never be replaced. Through the Toon Herman's "Huis" (house), the Netherland's cancer support organization, I am working with a wonderful therapist whom I see weekly. Alied van der Aa, trained also in the US, helps me to cope with the natural grief I already feel. Martijn's condition and inevitable death weigh like a lead ball in the pit of my stomach. My old vitality and zest for life is currently subdued and I am in a heightened awareness of the joy I experience at his physical presence, his touch, his voice, his smile, his laughter. I memorize these times yet, naturally, grieve their eventual departure. Sure there will be the transformative love everlasting between us. I know this, I feel and believe in this. But I remain flesh and blood and so am aware of my loss.

I told Alied that I must be depressed. And she said something so simple yet so profound that now, even in my deepest sadness, comforts me. She said: "Depression is an abnormal reaction to normal events; grief is a normal reaction to abnormal events." Martijn and I should be looking forward to the best years of our life together. It is terribly abnormal that he departs me so prematurely. I am in grief.

Full Sun

Martijn shares a spot of sun on Saturday, April 26th.

Using all his grit and determination we walked the three blocks to the River Meuse on a sunny Saturday afternoon to enjoy sun, bird songs and each other.

In his mother's back garden on her 77th birthday, Wednesday, April 23rd with sister-in-law, Leah and brother Noel.

Marcel, brother-in-law Paul and sister Elly joined in for Geri's birthday celebration.

Not Alone

Marcel and Mother, Geri, a quiet dinner with us last Sunday, April 13th

Maurice Bom, our doctor, visits on Monday, April 14th 

Maurice consults with Martijn

It's been a while since I wrote. We've had a mostly good week. At present, Martijn is in a slightly stronger ‘chi’ pattern, I think influenced greatly by his lymph therapy sessions. On the other hand, his visage is greyer, and he tires a bit more easily. Still, he’s mobile and doing things, in a limited way, that he enjoys – making his own breakfast and lunch and lots and lots of reading and writing. Still, the pain is increasing and I imagine the cancer spreading, albeit at its own sinister pace. We have no extra help at present due to the situation I describe, but our general practitioner has a palliative team on hand for the changes sure to come. I am now seeing a therapist weekly and she’s a great help. She works with grief and is based in the Toon Hermans ‘Huis’ - the national Dutch cancer support organization that has lovely houses throughout the Netherlands offering such counseling, cooking lessons, art sessions, massage and other services all aimed at helping cancer patients and family through this journey. I'm trying as best I can to be and keep present, enjoying Martijn's company, while still bracing myself for the awful realities I will endure in the days to come. I have ridden a full spectrum of emotions this week, but mostly managed to keep one foot in front of the other.

Yesterday dear friends from Martijn's university days, Werner and Henk, stayed for the afternoon and evening. We celebrated a sort of makeshift Passover, although with Indonesian food substituting for a traditional seder dinner. Today David and Michael arrived from Minneapolis. It is so good to have them here. We spent a very quiet afternoon filled with laughter and tears. Martijn wants everyone to know he doesn't feel alone.

Martijn Reads a Minnetonka Cat Tale 3

More adventures of Yin, Yang and sister Snoepje. Written by Martijn Hermse for his beloved wife, Susan Schaefer during this mysterious passage of our lives.

Baby Snoepje, big owl face, casts a big shadow at home in Cottagewood, on Lake Minnetonka

The inscrutable Mr. Yin, on deck in Cottagewood, Lake Minnetonka 

The laid-back Mr. Yang, on deck, in Cottagewood, Lake Minnetonka

We thank everyone who continues to read, watch, write comments, send real mail and email. It lets us know we are not alone and are surrounded by light, love and support. 

Take Time to Memorize Each Other

Monday, April 7th, Sister Elle shines during a visit.

Martijn's lymph therapist, Eric Breuer, plays Frankenstein. Eric is trained in the newly evolving field of lymph therapy. After massage to push the lymph fluid up to the belly area where it can be better absorbed by the body, Eric gently wraps Martijn's leg in special bandages. The swelling and the pain are greatly reduced by this procedure.

At lunchtime, one of Martijn's oldest, dearest friends from his university days, Wijnand van Lieshout, arrives for a day long visit. Martijn wanted to discuss text from Ludwig Binswanger, a Swiss psychiatrist and pioneer in the field of existential psychology with Wijnand, who is an expert on his work. Martijn admires Binswanger's theories on eternal love and wants to use selected text for his memorial service. What a gift for these two 'eternal' friends to have a day to discuss love and friendship in quiet harmony. What a privilege for me to be quietly working on my own in the glow of the environment they create. 

I take to heart what our dear friends, David Fey and Michael Putman, who will arrive to stay with us in 10 days, wrote recently as a comment on this blog: Walk it bravely and in love, holding hands and being in the "now" with each other. Cherish it...and as a lyric from a Josh Groban song ... goes...take the time to memorize each other.

Now is the time for quiet meetings, for thoughtful contemplations about the transcendence of love, for meaningful embraces and acknowledgments of the many friendships and kindnesses shown throughout a lifetime...a too short one. And for me, as I try to do my best to be present, to do my work, to be a caregiver to my beloved, it is truly the time to memorize each other.

Martijn Reads a Minnetonka Cat Tale

I asked Martijn to write me stories from the point of view of our beloved cats, Yin, Yang and Snoepje (Snoop-yea). Here he is lying comfortably on the couch in his cozy study reading Tale 2. We hope you enjoy it. Remember creativity and love last for all eternity!

Trains, dreams, friendship

Martijn admires a model train exhibit on March 30th. This was his last outside walk before the lymph edema swelled his left leg beyond capability to take a walk. He loves trains and this painful trek was worthwhile. Look at that smile.

Barbara Greenberg outdoes herself again, baking Susan a spectacular chocolate birthday cake. Saturday was my birthday.

The best present I could think of was to buy us a comfortable, practical bed that will keep Martijn's painful leg raised. Here is the bed set-up team surrounding a smiling Martijn: his brother Janus, Olena Breyman and Maurice Schoffelen. Getting these electronic beds up a staircase and set up was a yeoman's work. 

But our hardworking team enjoyed the rewards of seeing these two bedbugs together. We hope that having these electronic beds will allow us to stay next to each other as our journey continues. 

With Martijn perched in his zero-gravity chair across the room, our hard working bed-team joined by Ursula Glunk (front right)  and Krista Knopper (under the artwork) for tea and Barbara's birthday cake.

Martijn and I try to keep our spirits. We face this journey with full knowledge that these are our precious final days together. We have been consulted by our wonderful general practitioner, Maurice Bom, who has been compassionate and honest in delivering the information of what we can expect as time passes. We are aware of various palliative treatments that should keep Martijn comfortable and pain free. Although this knowledge is shocking, we try to keep on living and loving since that seems the sane thing to do. We have had expected breakdowns filled with tears, and this is so good, so natural, so bonding. I have asked and Martijn has agreed to write me ten little stories from our cats point of view and to illustrate with his wonderful drawings. Tonight, at dinner at his mother's, she asked that we record his voice. I was touched to tears by this since it is his voice I think I shall miss the most. That gentle voice filled with wisdom and mirth and corny jokes and deep thoughts.

We are trying to discuss the weighty items that need our attention but this we find perhaps very difficult to do. And part of this is how and when to allow friends to visit without taxing our fragile cocoon. We shall do our best to do this well. I feel more and more embarrassed that people think I'm strong about all this. In my private moments I rant and wail, shaking like a leaf in a terrible storm at the pain and loneliness I already sense. I have no idea how my emotions will be minute to minute. It is Martijn who centers me and what will happen when that needle no longer points a better way?

Bringing him home

Martijn's bird tells all. Drawn today at the azM (hospital)

There was no surgery today. After a very difficult series of meetings with a series of our doctors - from our trusted oncological surgeon, Kristien Keymeulen, M.D., to the urologist, Dr. Stijns, M.D., to our dear general practitioner, Maurice Bom, M.D., and finally to the previously unknown medical oncologist, we were given a grim prognosis. The cancer has spread too rapidly and widely to treat in any way. 

The tumors threaten kidney, bladder and liver. Chemotherapy requires a relatively healthy person and two functioning kidneys. Martijn is not in shape to undergo such a procedure. The proposed  kidney 'puncture' and drain could have caused much discomfort for too little long-term gain - or worse. 

We are planning to live together as best as we can the rest of our remaining time at home. If that is possible. Tomorrow Dr. Bom will come to discuss the plan. It will not be easy - one tumor already is externally protruding and could rupture at any time. I'm so sorry to say no optimistic words at present. I am telling in this blog the same grim reality we face. We cried a lot today. You understand, I'm sure. We laughed, we talked about people we love, trips we've taken and in general a love we believe transcends space and time. I agonize over Martijn not having unnecessary pain and know that we will discuss this and plan for it. I equally agonize over keeping my grace, even now my tummy is in a huge knot and I feel ill.

But beyond it, beyond it all, we face this inevitable conclusion surrounded by radiant light and love. We feel your support over time and space. We are so grateful for this strange, virtual community and what it brings, as though it is as tangible as a sip of water to quench thirst. We hope you can truly understand and appreciate what your connection to us means.

Thanks to the discerning ear of my dear friend, Dr. David Meyers, who with wife, Roberta, was with us a few short weeks ago, I learned of Irish poet, philosopher and scholar, John O'Donohue, who died peacefully in his sleep at age 52 this past January. O'Donohue was interviewed shortly before his untimely death on a wonderful program, Speaking of Faith, hosted by Krista Tippett, from American Public Media, a weekly conversation about belief, meaning, ethics, and ideas.  The program and this poet couldn't have entered my life at more poignant moment. Here is "A Blessing for Death" from John O'Donohue's book Anam Cara, meaning 'soul friend'.

A Blessing for Death

I pray that you will have the blessing of being consoled and

sure about your own death.

May you know in your soul that there is no need to be afraid.

When you time comes, may you be given every blessing 

and shelter that you need. 

May there be a beautiful welcome for you in the home that

you are going to.

You are not going somewhere strange. You are going back to

the home that you never left.

May you have a wonderful urgency to live your life to the 

full.

May you live compassionately and creatively and transfigure

everything this is negative within you and about you.

When you come to die may it be after a long life.

May you be peaceful and happy and in the presence of those who really care for you.

May your going be sheltered and your welcome assured.

May your soul smile in the embrace of your anam cara. 

Disturbing Results

Martijn catches a quiet read in my study a week ago

It is April 1st but there weren't any jokes for us today. Martijn is back in the hospital this evening waiting for emergency surgery tomorrow on his right kidney. The PET/CT scan revealed that the cancer has spread to his lymph system at and above the groin. One large tumor so obstructed his right kidney that it failed, leaking urine into his body cavity. They will catheterize that kidney tomorrow resulting in what the urologist called a permanent situation. The catheter will puncture his back, hopefully draining and possibly bringing back to function to that kidney. There is another large tumor in his pelvis and metastasis in his liver. The urologist, Dr. Stijns, said that if they could resuscitate his right kidney he would be able to handle chemotherapy if the medical oncologist decides there is a treatment. 

I write these words as though they are normal to write. Nothing is normal. It is extraordinarily surreal. I want to wake from this dream but my little heart knows it doesn't happen like that.

Martijn, as always, was in great spirits, though the gravity of the news hadn't time to set in before we were whisked from the cancer to the urology clinic and finally the nursing floor. I dashed back home by bus to pack his soft 'jamies and a few essentials, returning with his mother, Geri and our steadfast Marcel. Keep us, as always in your thoughts, meditations and prayers. 

White Easter 2008

Uncommon White Easter Monday, March 24, 2008, from our second story balcony

Martijn visits with brothers, Noel, Jan, and sisters-in-law, Irma and Leah, 

Good Friday, March 21st

Brother Noel gazes with Leiven as T'jeu talks with Uncle Martijn

We were blessed this holiday weekend by getting to spend quality time with Martijn's brother Jan, wife Irma and sons, Matthieu, known as T'jeu [pronounced T'chew] and Leiven, who live in Amersfoort nearby Amsterdam, as well as with his youngest brother, Noel and his wife, Leah, who live in Maastricht but haven't been part of family gatherings for over two years. Reconciliations are healing and holy. So Good Friday was really good.

The Thursday evening before good friends Frank and Jacqueline stopped by for gossip and conversation. Frank and Jan are old school day chums and Frank has adopted us into his own warm and encompassing circle. Jacqueline was a major part of moving in to this building a year ago, taking over the painting and generally helping us to settle in.

Saturday, good buddy Maurice Schoffelen transported me to an office center outlet to happily shop for my favorite things, like paper clips and hanging folders while Jan returned for a more private visit with his big brother. That night we entertained friends Yuri and Steven whom we haven't seen in almost a year. They divide their time between homes here in Maastricht, San Francisco and now, their newest abode in Brussels. 

Sunday, Easter Day, we enjoyed a quiet dinner at my mother-in-law, Geri's along with Marcel, Noel and Leah. But Martijn was feeling peaky and we left early. His pain has increased as has his overall discomfort in sitting, walking or laying. I'm generally trying to hold my own faltering emotions in check, now struggling to fight back bleak thoughts, instead trying to enjoy these moments since they are the only thing that is real in my otherwise abstract thought landscape. Mostly Martijn and I enjoy very quiet time together in this wonderful house.

I'm very grateful that my work for ECDPM can mostly be done from here allowing us to continue to be together. Tomorrow I head to The Hague, about a two and a half hour train trip, to meet the officials in the Dutch Ministry of Foreign Affairs who are major funders of ECDPM. Specifically I'll interview the Director General of International Cooperation, who plays an important part of the Ministry's development activities. 

Martijn's Reflections and Waiting for Tests

Martijn in January 2008, cafe atop the V&D department store, Maastricht

Life surely is one moment at a time.  Here we are savoring our small, precious moments of day-to-day activities. Martijn, thanks to the timely intervention of our wonderful general practitioner (huisarts), Dr. Maurice Bom,  is feeling more comfortable. Maurice paid a house call last Wednesday evening, the day our guests, Dave, David and Roberta departed. Two simple prescriptions, one to help relieve constipation, the other to reduce the swelling caused by the tumor, have made a big difference. Martijn's appetite has returned and he is determined to keep his weight up. This is important and good. 

The long waits for more tests, however, are not good. We are now scheduled for his PET/CT (cat) scan combination on March 28th. The biopsy was more than a week ago confirming that the cancer had returned. Now another long wait. These delays shake my beliefs that everything happens for a purpose - to teach us something. Rather I feel anxious and unhappy that we are forced to wait.

Yet, yesterday, a day filled with business related activities for me, I asked Martijn to begin to write me small notes with his famous, delightful illustrations (bet you didn't know about his drawing). Our intention is to build a small log of our feelings during this time. Yesterday's note contained a cute drawing of a cat face from a cushion we have that nestles on the couch in his study, and his reflection that: "I feel very calm and I think it has to do with my philosophy background." As always he enjoyed the stillness around him, but I was grateful to know that was made pleasurable with "the expectation that you will soon will come back and fill the space with another voice...." I share these feelings. I inhabit this space so happily with the knowledge of Martijn's quiet presence in another room. It is impossible to imagine it otherwise. 

Zero Gravity

Martijn, awaiting the new zero gravity chairs with his leg elevated the old fashioned way!

Good friend, Trish, tries one out. Lift off!

Martijn with Chris, cozy in the new chairs

Sometimes the best tact is to simply hang in there. While we await news from the hospital regarding the upcoming PET/Cat Scan availability, we just keep moving forward... or hanging upside down! A while back it was suggested the very best position for Martijn is with his feet elevated above his head due the condition of his lymph glands. After a lengthy search we discovered "The Perfect Chair" or the Zero Gravity chair which allows the user to recline much as an astronaut during launch reducing pressure to the spine and keeping the legs above the heart. Thanks to a very nice team at a furniture store in Aachen, Germany named Sequoia, we were able to import these beauties, made in Thailand, shipped from California to Germany to the Netherlands. Trish stopped by for a visit this past Friday and got to sample one. Today Martijn spent quality time with a close friend, Chris, from his university days. With so much in the balance it is simply marvelous to hang out with good friends. Our new chairs make visits more fun. Come try one. 

Savoring the Moments

Marcel celebrates 65 hard won years, March 6, 2008

There aren't sufficient words to describe the love, attention, affection and support provided by Marcel Winten, my mother-in-law, Geri's life partner. It almost is possible to overlook his steady presence in our extended family because Marcel prefers to inhabit the background in his quiet and self-effacing way. But he is truly the rock upon which our family is anchored. It was fortunate that Dave Hyde's arrival coincided with the traditional Dutch family-style celebration of Marcel's special birthday so that he could experience this most quintessential Dutch treat.

Aunt Eneke, Uncle Jan, Marcel and Aunt Sus

Here our family gathers in the cozy glow of my mother-in-law's living room, enjoying traditional Limburg vlaai (pie) and conversation.

Dave Hyde, David Meyers and Roberta Strickler, March 11, 2007

In a more traditional American moment, our great friends invade our kitchen to cook up some chicken and risotto magic. Martijn was ailing so we cancelled our fancy dinner reservations for this goodbye dinner to our guests as they took over all preparations and clean-up.

Maastricht's best kept secret- 5 star Schaefer-Hermse Restaurant Ceramique!

Who needs cramped seating and bothersome European smokers during an exquisite dinner? Not our happy crew. 

The Reading Room

A moment of restful reflection as Martijn, Dave and David contemplate world affairs in our relaxing 'reading room'.

In these days of doubt and fear for the future of Martijn's health we try to savor each day. Illness sometimes robs us of the joys of life. It is then critical that within capacity we live each day to its fullest. Enjoying the love and support of our family and friends eases the strain of focusing on the life-robbing cancer; rather, we are able to escape into the richness that their presence offers. Surely this extends the healing process.

Keep on Smiling

Martijn & his Mother Geri, at her home,  March 6, 2008, Marcel's 65th birthday celebration

Martijn, David Meyers, Roberta Strickler, Dave Hyde & Me

March 11, 2008

To understand bravery and spirit you are lucky if you know Martijn. His spirit is larger than most of our imaginations can fathom. It is as limitless as universe after universe. He teaches me about what it means to be a real human being, not a human doing. His first ambition is to make sure that his guests, his friends, his family are okay; then comes himself.

Due to plans made just a few short weeks ago when his health was going strong and his strength on the upswing, we invited our dear friends David and Roberta to stay here, coming for TEFAF, the huge art fair held in Maastricht and visiting other places of interest. When our other friend, Dave Hyde, asked if he should stop by on his way from Dubai back to Minneapolis, we said, sure, happily anticipating a houseful of good friends who had a common connection of having lived a long time in Chicago.

So it was with great sadness that Martijn had to bow out of most of our plans as his condition worsened extremely rapidly. Dave arrived on Thursday, the day the entire family celebrated Marcel's 65th birthday. We were pleased to attend and share the joy, but already Martijn was in pain.

Dave was perfect company, generously lending his ear and hugs, happily hanging out and just being. Saturday David and Roberta arrived. Originally we were all to meet them in Brussels for a day of sightseeing. Instead Dave served as my escort and the four of us enjoyed an afternoon. But I was eager to return home and so we had a nice dinner all together with Martijn. Sunday Barbara Greenberg and Pawel Kromholz had all of us for a big family style dinner at their home/art studio. Martijn joined but was greatly relieved to be back home that night. Monday only the four of us attended TEFAF, and Tuesday we cancelled a special dinner out while David and Roberta prepared a risotto and chicken feast.

Our visitors left today in a very poignant goodbye to Martijn. His condition is deteriorating almost by the day. Although he is keeping his brave face, the cancer has spread and most distressing, now his appetite is gone – the most dangerous thing that can happen in these cases. His medical doctor comes this evening to conduct a physical exam while we wait for the hospital to receive a certain chemical to conduct a full body scan to determine where and how many organs now are invaded. 

There is no good news here. The worse situation for me is seeing Martijn in real pain and distress. 

I will continue with my work for ECDPM since it doesn’t do any good for me to simply sit by, but as you can imagine this is a depressing and achingly sad time for us. Thank you for your comments, wishes, emails, love and support. Susan

The Last Leaf

William Sydney Porter, known in American Literature as O. Henry (1862-1910) was a prolific American short-story writer, a master of surprise endings, who wrote about the life of ordinary people in New York City. A twist of plot, which turns on an ironic or coincidental circumstance, is typical of O. Henry's stories. One of his most poignant is "The Last Leaf", the tale of painter who in a heroic gesture, saves the life of a character dying of pneumonia who is sure she will die once the last leaf on a trail of ivy outside the window blows away in the winter wind. Staying up all night the painter renders a leaf on the wall. She lives but the painter himself dies. Outside our home one of our newly planted thirty foot tall oak trees kept its lower branch of leaves all winter. I watched that cluster of leaves like O. Henry's character, hanging onto hope. Monday a week ago as I threw open our outer shutters I saw in horror that this cluster had finally succumbed to a terrible wind storm. It was the day Martijn asked me to feel the lump in his groin. Would that I could paint a last leaf to endure eternity.

Discouraging News

Martijn, February 14, 2008, our 12th anniversary

We were so hopeful just a month ago, but today Dr. Keymeulen confirmed that the cancer has spread to other lymph glands. Next week they will perform a full body scan to determine how far it has spread and what course of action can be undertaken. Lightening the blow today is the presence of our dear friend, David Hyde, visiting from Minneapolis. Dave stayed with us during the long wait at the cancer clinic post echo-gram and biopsy. Devastated describes my mood. We will post more information mid-next week. I almost don't have the heart to ask for your prayers as it feels, well.... But as always, we know you are there with us, and that does ease the terrible burden. Please take the time to tell someone you love, that you love them. Susan

Make My Day

Martijn, Carnival Cowboy, c. 1958, gunning for the bad guys

Cancer doesn't let one become complacent. Martijn, like the little sheriff pictured here, has been vigilant during his recovery, keeping a careful eye out for that 'baddest' of all bad guys, the big CA. So a few weeks ago when a troubling swelling in his impacted groin area hardened, he knew it was time to marshall his medical deputies into a posse. Today, we spent a bit of  time back the hospital, AZM, eliminating certain suspects. A big fear of Dr. Keymeulen was that the pressure of the lymph fluid or scar tissue had created thrombosis, hence phlebitis, a life threatening condition all surgeons want to avoid. One echo-gram eliminated that from the suspect list relieving all three of us.

Now Dr. Keymeulen will convene her colleagues to analyze what steps to take next. Martijn's swelling is not a good sign, and it interferes with his comfort and well-being. 

Like all good cowboys, Martijn will walk tall and face this culprit head on. And I am his faithful sidekick, there with love, humor and all the support I can muster. As always, we'll keep you posted and as always, keep us in your thoughts, meditations and prayers. 'Giddiup' and go get 'em!

Connecting and concern

Damian and Susan, February 25, 2007

Last week, Damian Gadzinowski, one of my University of Maastricht Master's Programme classmates paid a visit. It had been almost a year since we last met and it was good to catch up. Damian now works for the Warsaw satellite office of the European Institute for Public Administration, (EIPA), where we spent three months of our masters training. Since he's Polish, this means he's back on his own home soil after spending two years working in Brussels. We got to compare notes about work, our private lives and to reminisce about our student days. Its hard to believe that we're coming up to our three year reunion this June.

The past few weeks have been almost other-worldly. Martijn came down with the cold/flu that has decimated Maastricht, and I hear, the rest of the Western world. There are some other issues, too, related to the cancer and the surgery. Martijn has been so well and brave for the past months that it is very hard to see him in any distress. Tomorrow we head back to the clinic for a check up. Fingers crossed.