Family, Food, Friendship and Patterns

Back to beddy! Here's himself waving as he settles into our own bed. Tonight we're going "whole hog" - an attempt to see if we can sleep in our own 'beddy' together for the first time in a month! Hopefully I won't roll over on the precious lymph wound drain detaching it! Friday evening, October 26, 2007.






My sister-in-law Irma and the boys watching a Wallace and Gromit flick this afternoon at our home.






Brother-in-law Janus and Martijn chat easily today.

Family and friends rallied around us today. First, we began with a trial snuggle in our own bed this morning, followed by a nice breakfast together and time out to listen to our Thich Nhat Hanh cd. By the time the morning Home Nurse arrived I was out the door to walk two short blocks to shop for ample supplies at our local grocery, Albert Hein. I stocked up more than usual as I now fear disruptions that could keep me from my otherwise 'daily' shopping trips. I picked up two nice DVDs - Wallace and Gromit meet the Werewolf and Old Yeller, as little gifts for our nephews, 'Tjeu [Chauw] and Leiven [Lee-va]. Jan and Irma and the boys stayed for lunch and a film. Then, Irma headed back to Amersfoort and Jan stayed on to watch a Russian opera with Martijn. Thankfully I fled this racket to shop for stainless steel pans - no more teflon or aluminum as they are considered counter indicative for cancer in some circles.

Later in the day I cooked up a tofu/turkey stir fry with baked yams - pretty yummy. One of our favorite Home Care nurses, Sylvie, came to empty the drain and change Martijn's colostomy bag. He has a slight irritation around that wound, but Sylvie said it wasn't too serious. Martijn has changed his own bag a few times now and seems to have easily adapted to life with his fancy, soft, flesh colored bags. They are so different from the bad old days of bulky plastic. Our "stoma" nurse explained there are over 200 varieties here in the Netherlands. Martijn is using a rather small size which is very discreet and he says entirely comfortable.

We managed another cozy evening alone after dinner and the nurse. I enjoyed two long conversations today with old dear friends. I rang up Leslie Mogul in Escondido, California to learn, thankfully, that she and her family survived the terrible fires. She gave a rather grim report of conditions in her neighborhood and I enquired after the animals in the famous Safari Park, a place where Leslie, her hubby Bill, Martijn and I enjoyed many times together. Only two animals perished, she reported. Her mother, Elaine, another dear friend, also fared okay during this horrifying period. We wish all our friends in that region good luck as the drought continues.

Sally Eves and I also had one of our frequent great, long conversations. Shown here with my other good buddy, Barbara Craig (at her Philly home in May 2006), Sally and I go way, way back. We've been friends since about 1969, so you can do the math. There's really nothing like the ease of talking to such old friends. We share so much history. Sally lives in her childhood family homestead in the mountains of Pennsylvania near Bloomsburg with her menagerie of three kitties, Midnight, Buttercup and Sam, plus Dusty the Dog. Sam is famous for writing a 12-page letter to humor Martijn during his hospital recovery. It was truly amazing how his ‘pawwriting’ resembled Sally's! Barbara also has been calling a few times a week to check in and send loads of support as well. Davy Fey and Michael Putman called too, but we missed them. Bob Ingram has been sharing some particularly touching insights with me via email, and Kate Tasch has recently shared her invaluable perspective regarding being the caretaker. When her partner Michelle valiantly battled leukemia Kate was there every step of the way, so she knows these ropes very well. David Meyers has been in constant touch and the notes from his wife, Roberta are soothing and welcomed. Allan Crimm and his wife Sara, as always, continue to help us with medical and emotional intelligence. So, I got a good "American" fix today to sit nicely next to our European support.

Time to join the frog and see if we can make our bed a dreamy lily pad. Good night and ribbit, ribbit, ribbit to you. Suze

Old wounds and new opened and closed

Martijn's brother, Janus, Leiven, Irma and 'Tjeu Hermse, December 2005.

Today Marcel drove us to the hospital where both Martijn’s surgeon’s looked at the wound and decided on the spot to operate, reinserting a lymph drain and stitching the wound up again. Now we have to hope for no infection, and no abscess, but everyone feels this was a better solution than having an oozing, open wound at home.

But today I had a serious meltdown. We returned from the hospital and I began to prepare a nice meal, which actually relaxes and pleases me. But, just before serving dinner our good friends Maurice Schoffelen and Olena Breyman came by with a lovely homemade cake. During the conversation with them I felt Martijn was complaining about how I was handling the entire situation. That I got too stressed, etc. I found that I couldn’t handle what I perceived as any criticism.

After our dinner, I hit the bottom. I called Martijn’s brother, Janus, who is in town staying at Martijn's mother's house, with his wife Irma and sons, ‘Tjeu and Leiven, who are on fall holidays. Maybe one more trip to the hospital or suddenly being partially responsible for caring for Martijn’s new wound drain pushed me over the top. I felt scared, trapped and angry at Martijn for what I perceive is a lack of compassion back for me and my multiple responsibilities.

There it is, I felt terribly unappreciated. I suppose this sounds selfish, but it is what it is. Janus and Irma came immediately. Jan and I had a long and good talk and it turns out he and Irma had already agreed that he would travel from Amersfoort, (near Amsterdam which is about 2 1/2 hours away), to provide me ‘relief’ one day a week. He has already discussed this with his supervisor at work as well. This feels very supportive. I am overcome by gratitude. Later, I went out for a needed walk along the River Meuse with Irma and then for a drink at a nice nearby café. Irma herself had a bout with cancer a few years back and she and Janus understand the dynamics and pressures that illness put on a relationship. Irma was kind enough to admit that she felt my situation was even more stressful, with my dealing with Martijn’s grim prognosis, severity of the surgery he’s undergone, a different language, culture and healthcare system, not to mention not working, no income and increased expenses.

I also called our Minnesota financial planner, Darrell Norling, to discuss cashing in Martijn’s small ‘retirement’ account that I’d set up and funded for him. With his current disability we can do this without incurring a penalty and frankly, we need the funds. If possible next week I’d like to approach my client, the city of Maastricht, to see if I can begin a small project that they hired me for. I really need to work again for my own mental health.

Old wounds and new opened and closed.

Love, Suze

The Art of Mindful Living

Born in central Vietnam in 1926, Zen Master Thich Nhat Hanh (called Thây by his students) is one of the best known and most respected Zen masters in the world today, as well as a poet, and peace and human rights activist. Two of our best friends, David Fey and Ursula Glunk, who have been noted on this site previously, introduced me to his teachings. Last week, in the midst of my most stressful period, David gifted me with an simple yet powerful CD set of his teachings, entitled 'The Art of Mindful Living', and Ursula almost simultaneously presented us with a lovely video. This morning, after the tension of this week, (or perhaps I should say of the past four months), I sat perfectly still listening to his 'satsong' and practicing his meditations in the beauty of our home. The strength and grounding of this exercise carried me through the day. Martijn was able to listen to some of the CD and wants to meditate together once we can coordinate this.

Coordination is a keyword of today. It seems that finally, the home care and the hospital have been miraculously pulled into coordination by our own Zen like general practitioner, Dr. Maurice Bom. While home care team has struggled valiantly with this leaking wound situation, they simply are not trained or specialized enough. Today one of the supervisors, Raymond, visited for the second time. Dr. Bom came for a home visit (yes dear American friends, they do this here) and suggested that I photograph the wound and email the images to our surgeon, Dr. Keymeulen. He also ordered a saner dressing system for the wound which I applied myself, simply clean sterile gauze with some wetness barrier. Later in the day Dr. Keymeulen and Dr. Bom rang up to say that Martijn will be examined at the hospital tomorrow - a relief. Dr. Bom assured us his office is available 24/7 through its emergency number as is the home care team!

I took time to run errands in our neighborhood dealing with thermometers, soothing teas, nutritious juices and a special waste bin for the medical refuse we're piling up. Martijn's sister Elly, brother-in-law, Paul, nephew Jony and niece Jolieke paid a visit. Sadly when they came a surge of exhaustion overtook me and I wasn't very hospitable I'm afraid. The healthcare system also delivered Martijn a large supply of ‘nutridrinks’ to help him gain much needed weight. He's down to 58 kilograms which is a shocking 128 pounds on his almost 6 foot frame.

Since Monday I have been preparing nutritious and fattening meals three times a day with ‘inbetweeners’ thrown in. This morning Martijn took a hand in the kitchen (he has too much energy!) and cooked his own oatmeal, accompanied by a huge hunk of ginger spice bread liberally spread with butter. Yes, right now he can eat whatever his little heart desires in spite of the many (and conflicting) ideas about vegan, vegetarian, blah blah cancer diets. At the moment high calories AND nutrition are the orders of the day. Lunch was leftovers from last night's dinner of turkey cutlets dredged in yogurt and lemon, breaded and sautéed in olive oil, mashed potatoes and spinach with a nutridrink. Dinner was spinach tortellinis with tomato sauce and cheese and a large fresh salad with homemade guacamole and a piece of Barbara's sinful chocolate cake smothered in homemade whipped cream with cane sugar and fresh vanilla bean. Naturally I'll gain all the weight!

Today my good buddy Barbara Craig, of Philadelphia, who herself has had this criminal anal cancer, asked what I wanted and she's sending me a case of Barbara's Natural Oat cereal which we devour most mornings and is not available here; dear friend Sally Eves, also from Pennsylvania, wants to purchase another evergreen for our healing garden to represent her and her loving furry family of kitties and a pooch named Dusty. This weekend our wonderful friends Christiane Schneider and Thomas Vieten, of Eupen, Belgium, are descending upon us with a pre-made healthy feast. And Marion (of Jang and Marion of Apeldoorn) will plan to come by at some point to help with cooking, cleaning, piano playing or storytelling. Friends here like Casey O'Dell, Claudia Vaz, Barbara Greenberg, Audrey Sondeijker and Johanna Martinez have already come with food and friendship; Frank Koeckebakker and Martijn's brother Janus have supplied countless DVDs, and Jacqueline Braun with lots of love and friendship.

Back stateside the messages from Suzanne Kochevar and Rich Heck, Theo Jolosky, Carol Malkinson and Dave Hyde, Rosalind Miller, Heinz Brummel, Paul and Libby Scheele, Suzy Queen, Kathy Tait and Bill Valentine, my cousin Hannah Williams, Michael Putman, dik and Carmen Bolger, and my wonderful classmates from Philadelphia High School for Girls, Class 211 of 1967, friends from Spiral Dynamics have kept me sane and supported. My dear, ex-husband Bob provides wonderful short stories to read, Anne McQuinn continues to light lights.Across Europe friends like our sweet Irena Zagajšek, Ankica Kosic, Krista Knopper, Ingrid Regout and other friends and colleagues from the University of Maastricht perform countless kindnesses for us. If I missed mentioning you, I apologize. Our cup runneth over and we are grateful that you continue filling it.

Martijn and I hope to begin to radiate back out; so many of you have your own ordeals, your own friends and family who are suffering or in pain. We hope to provide encouragement, inspiration and loving traditions that support you and yours even as we continue on our own perilous journey.

Tonight we had a romantic meal and settled, for one brief shining moment, into our cozy living room for the delicious pleasure of simply watching television TOGETHER. Your prayers, meditations, wishes and gestures have made this spot of simple pleasure possible. From the bottom of our hearts we thank you and hope you can all heal along with us. In peace, Suze

Not out of the water

Home care nurses try to deal with a large oozing wound. At home, October 23, 2007. The wound is getting larger, and we spent most of the day trying to address what I feel is a dangerous problem. I think Martijn should not have been released from the hospital given the fact that what was a well healing scar suddenly opened leaking lymph fluid. Though he has no fever, the wound looks pus-filled now, and as good as these home care nurses are I don't understand why a wound specialist hasn't been called. I worked non-stop today, literally from 9 to 9, cooking and cleaning linens and bed clothing. Tomorrow our general practitioner will call early and supposedly come by. This situation is both frightening and I think unnecessary. We try to keep our spirits up but I'm not a nurse and I feel rather scared by how this is going.

Heeee's BACK!!!

Welcome home sign made by the three adorable triplets who live next door, with a little help from their equally wonderful mom and dad, Monday, October 22nd, 2007. After a dreadful night for me, and a truly hectic morning "welcoming" the home care hospital bed delivery men early, and literally begging them to help me do a major furniture "redo" to accommodate the new hospital bed, followed by frantic phone calls back and forth between myself and Martijn due to the fact that he was being released by the hospital without transportation (or pajamas due to the leaking lymph fluid episode), and a mad dash with Marcel to pick him up, transport him home, followed by another mad dash to the supermarket, Martijn is HOME! The home care nurse almost decided NOT to come until Martijn insisted, and when she did, how glad we were since she seemed to actually know how to care for his newly opened stitches better than anyone on last night's hospital shift. In fact, she was great, as was her home care (Thuis Zorg) supervisor who was furious at the way Martijn was released from the hospital. Breathe, breathe, and breathe. I managed to make this strong, courageous man a terrific lunch and actually cooked up an inspired dinner for him, mother and Marcel as well. Just after finishing in whisked my personal guardian angel, Barbara Greenberg with her trademark chocolate tort to make the night complete. Heeee's Back, we snuggled, it's a thoroughly better day. I remain exhausted but now deeply happy. One day at a time. Thanks to all of you who wrote reminding me to take care of myself. I do, I really do, but today's marathon was necessary and satisfying. A really good evening to you. Smile on my tired face, Suze

Guests, wellness garden, happy moments, a disappointment

Top: Martijn with Merle and Sjoerd Soeters, Sunday, October 21, 2007, azM (Academic Hospital Maastricht
Middle: Herman Rouw and Ton Schaap prepare a feast for Suze after a day of visiting Martijn at hospital, Friday, October 19, 2007
Below: After Ton and Herman help Susan purchase and transport plants, here is the resulting evergreen, winter healing garden to aid Martijn's wellness when he returns home.

Today was one of those days that caught us off-guard. Somber reminders about what “progress” means in such circumstances. Martijn had literally hopped out of bed the other day and was off to the races as the video clip from the previous entry shows; somewhere with all this surprising forward movement there were the words of his surgeon warning that he could experience swelling in his legs from the drainage of lymph fluids. (He had been hooked up to a drainage system for his wounds for almost three weeks but those were removed earlier in the week.)

Martijn was off on one of his very long walks around the hospital showing off its mainly regional (and impressive) art collection to our dear friends, Sjoerd and Merle Soeters, who came to see us from Amsterdam. Just prior to taking this walk he mentioned to me that his thigh wound was swollen, (where the plastic surgeon removed his grisailles muscle and harvested some skin to transplant over his posterior amputation). I asked to see and didn’t like the look of the swelling at all, but off he went showing his off not only the art collection and architecture of the hospital, but his spunk and resolve as well. Unfortunately, the swelling was indeed pooled lymph fluid that he was warned about. By the time we got him back to his bed the wound sprouted like a fountain and when I left the hospital Martijn was laying unattended in a pool of this unsavory liquid. This wound which is over nine inches long had opened over an inch. I really didn’t want to leave but Martijn insisted I go. I left with a sinking feeling about the incident – both the physical element and the almost total lack of medical care.

As always, Martijn bravely accepted what seemed to me like too little measures to address this situation. It took quite some time before the nursing staff finally cleaned his bedclothes and the wound, placing a colostomy bag over it to collect the fluids. This will be the solution he has to accept for the entire evening. To me it seems crude and rather unprofessional. At the best of times hospitals in the Netherlands are understaffed; the weekends make me cringe. Ironically, our new general practitioner, Dr. Bom, postponed Martijn’s release from the hospital on Saturday, when he was originally scheduled. Thank goodness. I wouldn’t have known at all how to handle this situation even though I’m not pleased with the hospital’s treatment. I’m afraid of wound infection and who knows what else. Now we’ll have to see what tomorrow brings.

One step forward, two steps back? Or two steps forward, one step back? I’m not sure how to read this but nevertheless, I feel Martijn is better off still in hospital and fingers crossed that this situation is readily treated.

I intended to write happily about the round of anticipated guests who graciously visited with us this weekend, Ton Schaap and Herman Rouw, making a roundtrip from Amsterdam, on Friday returning Saturday and today the Soeters, but for the moment, this entry will have to suffice. I feel queasy in my tummy and very sad and tired. I realize that I cannot grow too dependent upon “progress”, but how do I manage? What straw should I grasp? I’ll try hard to remember my meditations and living for each moment, but as I’m not a zen master, this isn’t always in my grasp.

The Big Step

WOW! One small step for Martijn is indeed a giant leap for humankind. What spunk, what spirit, what strength. After 21 days flat on his back, Martijn rises easily and readily to meet the challenge as these two dedicated nurses gently raise him from his new, regular hospital bed, ask him to take some deep (but not too deep) breaths, and walk him "off to the races". He experienced no dizziness or nausea, but reported that standing and walking felt like being on a ship. Indeed. Later, the physical therapist introduced a wheeled walker and Martijn took off for a few longer walks down the corridor. Again he surprises all of us.

Our new general practitioner, Dr. Maurice Bom, earlier in the day warned that Martijn could experience understandable weakness after his weight loss and such a long time without movement. It would be acceptable, he warned me, if the therapists only had him move a little by the bedside. But low and behold - my former distance runner and weightlifter was off to a very promising start.

Today a volunteer from the "Harry Bacon" society that provides support to new colostomy bag users stopped by for a visit. Ger Brands provided Martijn with more than information, he will be a "buddy" throughout the beginning stages as we get used to this new life companion - a bowel movement bag outside the body.

A new room, a new bed, a new buddy, and new legs all in one day. These events give renewed spirit and determination that Martijn's new journey is beginning. These beacons speak volumes about how his body is 'hearing' all of your support. In gratitude, Susan

Old Friends

Martijn with Dorothé.

Old friends brighten any day, but they really light us up when we're feeling a little under the weather. So a special two-day visit with Dorothé Hönes, a very dear friend of Martijn's from the Stuttgart area of Germany brought a glow to his entire being.

Each day Martijn continues to gain strength. Tomorrow the doctors want to move him to a "regular" hospital bed, from the special sand and circulating airbed he's been in. Bigger step still will be doing just that - taking a step!! Tomorrow is also the day the physical therapist, who has been working each day with him, will try to get him at least to stand and take a step. To me, this would indeed be a big big step. What a scary yet thrilling idea after 21 full days on his back! I'd prefer to think that they'd first sit him up, but, let's see what happens.

Meanwhile, on the medical oncology front, other good friends from the German speaking part of Belgium are also looking into Dr. Crimm's suggestions about seeking medical chemotherapies. Martijn is obviously a strong and courageous man who has come through this brutal surgery with ease and grace to be admired. We've a long road to go yet, creator willing.

As always, I am in total awe at the number of you who continue to send such love and positive wishes. When I think of my "old friends" like David Fey and Carol Malkinson who dropped all their other responsibilities to come lend their love and support, I become deeply moved. When I was a little "only" child I vowed to create a "global family" and this was well before the word global grew so trendy. Martijn and I are blessed with just such a global family that ripples ever-outward including friends of friends. We can indeed heal one another this way; perhaps we can also tap such astounding love to heal this world that at times seems as sick and frail as my dear beloved husband. If you continue to light a light for Martijn, then do so also for the pain of others. Maybe our circle will radiate in places we can't imagine. Peace, Suze

Treatment options

Allan Crimm, MD, in his Philadelphia office, May 2006

There is not instruction booklet on how to proceed in times like these. Having faith and asking questions are requisite. Here is a letter I received from my good friend, Dr. Allan Crimm. We are so grateful for this bit of encouragement. Martijn and I will follow up.

Susie,
I have talked with 2 cancer specialists and have a call in to a 3rd person who I hope will call me back early this week.
Since Martijn has had spread of the cancer despite his initial treatment, it may be appropriate to have him take further treatment once he is stronger and recovered from the surgery. The idea is that it may very well prevent the cancer from coming back or slow it’s progression. The treatment would be a type of chemotherapy for which there is some evidence of efficacy in squamous cell cancer of the anus. There are not large trials in people who have not responded to the type of initial combination of chemotherapy with 5-FU and radiation like Martijn had. However, most oncologists who specialize in GI cancers have seen other people like Martijn and have found that selecting medications that have efficacy in fighting squamous cell cancer originating in other parts of the body (e.g head and neck cancer) may help with this type of squamous cell cancer originating in the anus. The drugs that have been mentioned are Erbetux (which is a monoclonal antibody that affects a cancer stimulating growth factor) and Irinotecan (which is a chemotherapy medication).

Remember that the advice you received about no further treatment was from the cancer surgeon, not from a medical oncologist. Someone with the latter background would most likely discuss options similar to the ones I have outlined above. I recommend that you ask that the medical oncologist who has seen him before be consulted now AND ALSO make an appt to see someone in Amsterdam or Rotterdam – wherever the person is with the biggest experience with GI cancers of various types – including anal cancer.

I hope this is useful to you.
Sara and I send you our love,
Allan

Paradox and love

One of Martijn's main surgeons, Dr. Keymueller, above. Below, mother, Geri Mullens and her partner, Macel Winten.


The poet Rainer Maria Rilke says, "love...consists in this, that two solitudes protect and border and slaute each other." I stand resolute in this definition of love, the kind that Martijn and I share. Now I embrace my solitude. I always fled from it. I seek company but rejoice in my solitude because there I find a limitless well filled by the love I have for Martijn and he for me. I'm not used to being alone but I feel much less so every day because, frankly, I'm not. This love we share grows beyond the borders of physical presence.

Friday Dr. Keymueller, pictured above, compassionately and frankly disclosed to us that Martijn's particular cancer pathology, anal squamous cell, does not/will not respond to any futher treatment now known. She clarified that all of the cancer HAS BEEN removed, but was resolute in stating that this particular cancer is known to return and aggressively. The message is that this cancer is terminal and currently untreatable. Martijn's response was, "So, I'm a ticking timebomb, eh?"

We didn't ask any questions like how long? They are pointless questions. Rather, we seek the current flip side of this news - that Martijn in fact has more than survived the surgery, but is once again thriving - filled with energy and appetitie. Our goal is to have him continue to grow strong, to make progress, to sit up, to walk again, to return home.

I did call two of my best friends, Allan Crimm and David Meyers, both medical doctors, to discuss any options currently known to treat this medically. They both responded in kind, that no medical protocol currently is known to combat the cancer in such a way that it prolongs the life of the patient with quality outweighing the downsides of the treatment. However, David located what are called "medical trials" here in the Netherlands. We may explore these in time.

The paradox is how strong and vital Martijn continues to grow, and that at least for this moment, he is cancer free. So, our protocol will be more alternative healing and requests from you, for as long as you can give us, to keep him cancer free and healthy. We will eat well, organically, and simply rejoice in the current moment. We will mediatate and wallow in the love of family, friends and colleagues. Really, what more can anyone do, anyway?

Tonight on the way home I petted a very old but happy cat and watched in awe the swans who greet me at the end of the canal path from the hospital. The swan is one of the oldest names in the English language. According to the book Animal Speak by Ted Andrews, it is the totem of the child, the poet, the mystic, and the dreamer. What better totem to symbolize Martijn?

So, Martijn grows strong but the prognosis is gloomy. Paradox doesn't really exist. We always hold opposites in the vessels of our hearts, minds and spirits. To enjoy light we must know darkness; to taste sweetness, we must know bitter. For today, I choose to water the seeds of lightness and sweetness, acknowledging that their counterparts, darkness and bitterness exist.

Much love and peace, Suze

Time to Reflect

Rich Heck, Suzanne Kochevar and the two of us, April 2005

We met with our surgeon, Dr. Keymeuller. We have much information to process. It is best to take time to reflect and remember all the wonderful moments we have in our life, like this one, shared with our dear friends Suzanne and Rich who spent two glorious weeks with us here in Maastricht in Spring 2005. We shared this luncheon by an old mill on the way from Monet's Garden to the Tuileries. It was a glorious adventure filled with great friendship, wine, food, conversation and sights and sounds of a lifetime. Sleep well and count every blessing, Susan

The Sisterhood and Learning More

Carol, above and Audrey below bring some cheer to Martijn yesterday and today.

I waited all afternoon for Martijn's doctors to arrive to tell us what they know about the pathology of the tumors. After his dinner we asked one of the main "floor" nurses to please find out why no one yet had come to us. This nurse seemed to understand that we were both very frustrated with the lack of communication and follow through and assured us that tomorrow someone would come. So, I left my sweetie who seemed satisfied to relax a bit before his mother and Aunt "Zus" would come for a short evening visit.

My evening was a spontaneous meeting of the Divine Secrets of the Ma-Ma Sisterhood - an impromptu gathering of a few good women friends - Barbara Greenberg, Casey O'Dell, Audrey Sodijker, Claudia Vaz and Johanna Martinez - who graciously each cooked a dish or brought a nice bottle of wine to share with Carol and me. A night of easy chatting, simple pleasures shared in the shadow of Martijn's illness and absence from our home. What seems like a lifetime ago now I had threatened to instigate a Ma-Ma (Maastricht) Sisterhood before cancer altered all agendas and plans. How coincidental it was then that when I phoned Martijn to have our good night conversation he told me that the Sandra Bullock, Ellyn Burstan Ya-Ya Sisterhood film was actually on telly this evening! So, after our real Ma-Mas left, Carol and I snuggled in to enjoy this tale of friendship and loyalty.

But only after Martijn had told me that late in the evening Dr. Keymueller had come to him to explain that they know there is still cancer in five lymph nodes. She will return tomorrow afternoon so that we can learn more what this means. While this is not the news we hoped for, it is not shocking - she's been indicating that this could be the case all along. A part of me believes they've known this and simply decided to give us time to heal from the initial trauma of the entire surgery. I asked Martijn how he felt and he said he needed to process this information. A gentle understatement. He doesn't want to upset me; I don't want to upset him. Today an old friend from Minnesota sent a brief email with a story of immense hope about her relative who was diagnosed with 4th stage throat cancer and given only a 10% chance to live. He's going strong five years later. There are many stories like this to help us through.

Right now all I can do is think of tomorrow and seeing Martijn and hugging him. Really all. Tonight we had a gathering of lovely, strong, compassionate women willing to embrace us, share our life and make one night divine. There will be many more days and evenings like this. So for now, keep us in your prayers. Light another candle; sing a silly song; laugh at the moon. Susan

Martijn Gives Thanks for Your Support

Please click on the arrow to see and hear Martijn discuss his gratitude for your healing thoughts and prayers.

Mending

Martijn, October 9, 2007, AZM (Academic Hospital Maastricht), FloorA4, Room 6

Today was a good day. Here you see Martijn for yourself. The changeover to vegetarian food has been successful so far. With his appetite up and running and food that is more digestible, Martijn is truly on the mend. Tomorrow we'll post a short video so he can express his gratitude to you for your well wishes.

Food for the Soul

High school days: Suze and Martijn together apart


The frontier here and now is adequate, digestible nutrition. Martijn continues to heal well, but true recovery means building up his entire system and food intake has become the single most stubborn obstacle. Today the mountain came to Mohammed. We finally tracked down his (very) young hospital nutritionist who readily admitted that there are terrible limitations in the hospital fare and not much room for change. However, after a lengthy discussion, Martijn asked the right question: what do you do when people are vegetarians? Ah ha, eureka - we have now changed his menu preference to vegetarian and the selection will include many more appropriate choices such as "Activa" type bio yogurts, omelets and other better choices. Tonight I prepared a tasty helping of lightly breaded turkey cutlets, marinated in a bio yogurt and tamari sauce, with steamed broccoli. Carol and I enjoyed it and tomorrow Martijn will have this warmed up. The following day his new regime should kick in so fingers crossed for a healthier change.

Meanwhile, we are still anticipating finding out more about the pathology of the tumor(s) late on Thursday.

Martijn was peacefully watching CSI on the telly when I made my goodnight call, hoping for a better rest. Carol and I are snuggling down for a quiet evening of BBC detectives. Today was a good day. I hope you had the same. Restfully, Susan

Two Souls Destined Together

Two Souls Destined Together, Jang's Garden, Tilburg, June 1995 (Rob Chizek, photographer)

Friends have asked me how I’m feeling. Really feeling. The pat answer is that depends on the moment – and there’s a lot of truth in the answer. But naturally there are traceable underlying feelings about this situation that remain consistent regardless of how I perceive Martijn is or isn’t doing.

I am deeply and profoundly sad. I miss Martijn as a part of my daily life. Even when we argued and bickered, when we got on each other’s nerves or pissed each other off, we ended almost every night of our “going on 13 years” with a cuddle, snuggle and backrub (for me). We have spent a total of only five or so weeks apart in all this time, period. Martijn accompanied me on almost every business trip I ever made. Many of our other coupled friends have spent much time apart due to the travel schedule of one or the other partner. Martijn and I always joke that this meant we’ve really been “together” at least double our 13 years since we’ve been almost inseparable. And we like that. Really enjoy each other’s company. Aside from partners and lovers we are best friends. So, my sadness at being apart runs deep.

I am scared – frightened that this blackguardly foe, this formidable enemy, cancer, has only momentarily been hacked back, chopped away from Martijn’s body in a most brutal excision, but only temporarily foiled. All my spiritual energy and positive beliefs don’t fully vanquish this niggling fear. How can they? If I succumb to the light and energy and Martijn is ultimately taken from me – what will happen then TO ME? To me? So the fear lets me prepare for this impossibility, or so one stubborn part of me believes. I perform my morning meditations, say my childhood “now I lay me down to sleep,” prayers, light candles at every shrine in Maastricht in the sincere belief that each candle, each meditation, each prayer is in fact a powerful healing beam lasering this cancer, this foe to be respected for its destructive force, its perseverance. I light the candle that our dear friend Audrey offered with it’s mixed Buddhist/Christian prayer pinned on it, recite the lovely Native American Indian prayer to the Creator offered by dear friend Michael, whose unwavering faith serves as beacon to me, light the candles sent by dear friends Jang and Marion, candles of natural bee’s wax filled with their pure love and friendship, and light my own dear Shabbat candles feeling deeply the primal brave resolve of my Jewish ancestors. Yet I remain scared.

I am angry. You even get angry with the patient. How could Martijn who was never sick a day in his life let this cancer in? Angry that our life together which has certainly not been easy by a long shot but was finally settling into a nice prospective future is now shattered, really as shattered as Martijn’s lovely body that has been sliced and cut and radiated and chemically burned. I am angry that this tumor which was so large, 7 x5 CM was not seen, not detected by all this medically advanced equipment so that Martijn didn’t have to go through his last months of agony. Angry that the hospital now isn’t more attuned to the extreme needs of someone so traumatically dissected and flat on his back – serving heavy food that makes him sicker. Angry that I have no work, no career at present to keep me sane, on track, productive. Angry that my Dutch is yet not good enough to talk in meaningful nuances to my mother-in-law, Geri, to Marcel, to the nurses, and to the many others here who are so supportive and kind. So angry, so scared, so sad.

And then, just as these feelings wash over me, there come these intense feelings of gratitude for my very unique life, a life shared with someone as rare as Martijn. His unconditional love has bathed my soul for all these years; his contrarian nature, whacky humor, gentleness to the extreme, have fed me, nourished me, guided me and wrapped me in a protective sheath that many individuals will never know. We have a funny kind of love. People know we are oddly matched, that the relationship seems a bit imbalanced, tilted to my strength on the practical side of the ledger – the worker, the bringer home of the bacon. But the truth is so plain for any who choose to see it: I couldn’t have done any of my so-called “business” feats without this great man beside me. Martijn and I often say to each other how truly amazing it is that in this great wide world we met and grew together. The true odd couple.

On our bedroom wall is this wedding saying from the Kabbalah: From every human being there rises a light that reaches straight to heaven and when TWO SOULS that are DESTINED to be TOGETHER find each other, their strings of light flow together and a single brighter light goes forth from their united being.

Today one little soul realized that that other little soul’s homemade cooking was better for his mind, body and soul that that of the hospital. Having spent another bad night due to extreme discomfort from having chowed down on heavy meat and veggies, he didn’t eat much all day. I steamed up some organic carrots, blended them together with organic whole yogurt and honey with a dash of ginger syrup. Like the old funny American television commercial for a new cereal, I can say “Marty likes it!” I added some small cubes of fresh goat cheese with a few “leafs” of salted rice crackers as a side dish, and added mashed banana and honey to the hospital's truly gruesome rice gruel, rendering it tasty and healthier. Honey is a miracle food and it is light on Martijn’s freaked out tummy. Thankfully he began to eat this with some of his former gusto. Now more than anything Martijn needs nutrition and digestibility. I'll happily do the cooking. I spent an entire summer learning about food, nutrition and healing when I worked at Philly's first health food restaurant owned by one of my longest term best friends, Nancy Carolan. I've practiced healthy eating my whole life. It feels like a dress rehearsal for this day.

When we had our goodnight call, Martijn told me he was feeling better, watching a “quality” program on Dutch telly. Now I can rest easier.

My feelings mostly ebb and flow with Martijn's well-being. I was told today to try to take some distance to help preserve myself. While that is good advice I guess I'm satisfied that our feelings like our souls flow together from our united being.

Good night, sweet dreams. Suze

A Sunny Saturday

Martijn, Liege (Luik) October 2005

Martijn had a good day. He ate, it stayed down, he had good color in his face and good humor. We visited, bought him the NRC weekend edition which will keep him happy and occupied with "quality" reading, as he likes to comment. Tomorrow I hope to make a two minute video interview about his impressions of this entire ordeal. I'll post it here for all to see.

The above photo is from a happy, healthy afternoon in Liege two years ago; tonight Barbara Greenberg will bring Carol and me to see Liege's famous first Saturday of October festival of lights where they will illuminate the whole city with candles. I'll say a little prayer that each one brings a day of health and healing to Martijn. In light, Suze

Mixed Bag

Martino with his semi-annual cigarillo last summer.

It was a bonus weather day here in Maastricht – a perfect greeting for dear friend Carol Malkinson’s arrival from Minnesota. Once again, Barbara Greenberg graciously chauffeured me to and from the airport to greet a friend who’s come lend love and support. With a mint blue sky, we took advantage and walked immediately to the hospital where Martijn eagerly awaited Carol’s arrival. Unfortunately, the accumulated stress of lying flat on his back added to the fact that the hospital once again served a too heavy lunch impacted Martijn’s ability to digest food. Just as we entered we could see that from his ashen demeanor that things weren’t well and he vomited violently. Trooper that he his, we later joked a little that Carol evokes such a strong response from all her “men”!

But, I find this issue increasingly not funny. The trauma of the surgery is one thing, the prone position entirely another. I’m going to request a meeting with the dietary staff and either Martijn will agree to go on intravenous nutrition at least until he’s not flat, or we have to figure out how to prepare nutritious yet perfectly easy to digest meals. After feeding and settling Carol in back at our home I returned for a quiet afternoon snuggled against Martijn. Today they also removed his hydration IV so we’re able to hug and snuggle with less tube interference, albeit imperfectly. Now only his wound drainage tubes remain, a great relief as long as we can work out the nutrition issue.

Tonight I cooked up a yummy fully organic carrot, yogurt, honey and ginger (great for digestion) meal that I pureed and intend to proffer him tomorrow for lunch. Also, I’ll bring papaya enzyme which can help Martijn’s acid reflux in a most natural way. Isn’t it simply amazing that hospitals don’t integrate natural with medical? I really don’t get how with all the information on holistic approaches available that the medical field stays in the dark ages.

When I phoned for my nightly good night, Martijn thought he’d be able to rest better this evening. Please light your candles and send healing sleep his way. I will, too. Good night, sweet friends.

Healing touch soothes horrendous tidings

Healing Touch

This morning an actual angel named Geraldine K. Hartmayer performed a profound healing on Martijn. In an astounding coincidence, Gerry “found” us just two days before she departs Maastricht where she and her husband, Bob, have lived for the past 8 years to move back to the States. Gerry felt compelled to contact me after she read an email I posted to members of my International Women’s Club (IWC) explaining Martijn’s condition and why I wouldn’t be attending any of the club’s various functions. Although her email moved me, initially I was not in a shape or mood to respond to her generous offer. That same evening, one of our most engaging neighbors, a young woman named Danielle, while walking her puppy, Xeno, literally ran into Gerry, who was out on her customary walk. Gerry asked if she could pet Xeno and for a strange and wondrous reason, Danielle told Gerry that she was very worried about her neighbor, Susan, who was herself so worried about her ill husband. Gerry asked if that was Susan Schaefer. Imagine this. When Danielle, in shock, replied, “yes”, Gerry asked her kindly to show her where we lived and to give me a personal note and brochure about healing touch. Not even knowing this part of this amazing serendipitous story, I called Gerry after Danielle got the note to me. The rest, as they say, is history. Gerry not only performed a deeply transformative healing on both Martijn and me, but later this evening, she hosted me at her rooftop home overlooking the River Maas, just two blocks from ours. Here, the third coincidence occurred. A meeting of healers was taking place, so Gerry introduced me to "The Healing Touch Program", a medically based energy therapy training program for nurses. It is considered one of the leading energy medicine programs in the world. http://www.healingtouchprogram.com I plan to stay in touch with energetic Gerry and these other women and hope to help one of them who would like to start her own clinic here in Maastricht.

Understanding the power of one’s self to heal from within will help lessen the shock of the details of Martijn’s surgery. One of his favorite surgeons, Dr. Keymueller, spent a lot of time with us just after the healing. While we still won’t have the full pathology report on the tumor itself for another week (due to the fact that the pathologists were attending a conference today), Dr. Keymueller explained in great detail about the surgery and the tumor. The tumor was at least 7 x 5 cm and had extended up from the anus into Martijn’s rectum, rectal lymph nodes, groin lymph nodes and his spine. Today I learned they removed his coccyx and a long section of his spine. She said they were astounded by how large the tumor was – this was entirely unexpected. She feels that they removed most of the tumor, and the lymph nodes that had been infected, but naturally she said they can’t be sure until they get the pathology report back, and even then, they will continue to check. She and we completely understand that right now the singular most important thing is for Martijn to heal from this traumatic surgery. Nothing else really matters.

Today, for the first time, I saw the size of the surgery on Martijn’s posterior. I will spare you the details. All I can say is that my husband has endured unimaginable surgery and is strong and stunning in his bravery and demeanor. Today they removed yet another tube, his catheter and now he’s darn proud to be peeing on his on. No mean feat when you do this while basically immobilized flat on your back. His humor is typical Matijn, his appetite continues to amaze and delight me, his pain is well managed, and he's in great shape for the shape he's in!

The plastic surgeon, who to me is like a zen master, is very pleased at Martijn’s overall health and progress, but he warned us that the next four to five days are the critical time for such “transplant” surgery – when the infections can set in. Yet, Dr. Keymueller reassured me that the very fact that Martijn is doing so well is an indication that even should the infections happen, they are well equipped to deal with them. The bigger problem is still that the inside tissue that was so damaged by the radiation needs to mend.

This morning’s healing was focused precisely on that problem. So, dear friends, we couldn’t be doing more, blending West with East, love with medicine, and faith with reality. Please keep your meditations flowing as we continue on this path to healing and hopefully to wellness.

Tomorrow another dear friend from Minnesota, Carol Malkinson, arrives to be with Martijn and me through this tense yet inspiring adventure. From the bottom of our hearts, we love you.

One Week After Surgery

The Two of Us, October 2006

It's difficult to believe that just one week ago Martijn was under the knife for eight whole hours. Today they removed his spinal epidural that supplied pain medication directly to the wounded areas. From nine tubes in, now only four remain: two draining the large wounds of his buttocks, stomach and thigh (where they removed a large muscle to replace one in his stomach area), the hydration intravenous, and his urine tube. Although last night he again vomited his oral food intake, he bravely tried again today, eating breakfast, lunch and dinner - foods like yogurt, broth and pureed meat and veggies. I supplied some organic honey to add to his yogurt and some propolis with honey. Both are natural antibiotics and help fight infection.

Today, one of the surgeons explained that it could take a while for his stomach to "kick back in" since almost all his natural fat was surgically removed from that area. Fat helps us process our meals, as I mentioned yesterday. However, when I left this evening he was feeling much better.

Me too. I walked home from the hospital - a leisurely 15-20 minute walk, reheated the tofu stir fry I'd cooked last night and even dared to drink a cosmopolitan with locally grown organic cranberry juice - a solitary celebration of Martijn passing a week marked with more progress than setbacks (knock wood). We spent the day almost alone with the exception of Barbara's second reading installment - a great pleasure for both of us.

We send our heartfelt thanks again to each of you. Your prayers, meditations, good wishes, support, emails, postings, cards and love continue to work the magic that is healing. Thank you simply doesn't seem enough. We have a long road to walk with much uncertainty ahead, but with you by our side we are stronger and connected to a force beyond the recognition of our mortal minds. Sleep well, The story continues.

Support in Many Flavors

Ursula Glunk, top; Barbara Greenberg, below.

Martijn made good progress today. They removed his oxygen tube and stomach drain. He’s a lot less bionic looking sans those protuberances sprouting from his nose. The nursing staff clean shaved him this morning so the overall effect has him looking rosy for such sick guy! There are still many problems with food intake. He is suffering from expected hiccups and reflux due to multiple factors: the surgeons removed most of his own stomach fat during the surgery – while we all joke about fat, the fact is you need this layer to aid digestion; Martijn didn’t have much fat there to begin with and now he’s growing his own from tissue and fat harvested from his butt and thigh. The absence of this critical layer is slowing his digestive progress. And, as we’ve said, he’s flat on his back. Imagine trying to sip soup or water in that manner. It’s difficult enough when we are healthy. The hics and reflux can also keep his sleep at bay, not a good thing when he’s trying to recover from such a massive assault on his body. Hopefully each day will help this situation to mend. His outer scars are healing nicely. The true test, however, will be the inner mending. Time will tell.

I’ve administered daily foot massage with a thick, natural hemp product from the Body Shop. Overnight after the surgery it seems Martijn’s feet turned to leather. The massages seem to bring some relief to his swollen legs and feet and tomorrow the physical therapist is supposed to begin work to help his legs from swelling more.

I took a little TLC myself this morning, seeking an unbelievably needed Shiatsu massage from my therapist, the angel Simone Peerdeman. Not only does she move my body but my soul. I mentioned to her that David Fey had practiced some mindfulness meditations he received from Thich Nhat Hahn whom he had the rare opportunity to study with. When I rose from my relaxed state, Simone had produced a lovely postcard of the master himself, signed with love and light to Martijn. Now Thich Nhat Hahn's likeness faces Martijn across his bed on the handy little bulletin board each room sports.

After my massage I attended an eye opening meeting at the Toon Hermans Huis, the Netherlands’s premiere cancer support organization. Ursula arranged the meeting and accompanied me. We learned of the many and varied services offered to patients and partners such as healthy cooking classes, art workshops, relaxation and meditation classes, and so on. While giving us a mini-tour, our counselor, France, led us into the finale of the cooking class and we were kindly invited to sample a portion of today’s lesson – a sort of pureed eggplant guacamole. The chef, the volunteers, the clients were each nicer than the other and I’m sure we will make good use of this service.

Back at the hospital Martijn enjoyed a bit of pampering from Barbara Greenberg, who had enlisted to read to Martijn which is just what she did today. We passed a very quiet time listening to her superb reading voice. In fact, I hear it now, in my head and I’m going to listen as I drift to a better night’s sleep. You, too! Suze

Monday brings progress

Yulan San, Bob Ingram and the two of us at the castle ruins in historic Valkenburg, just outside Maastricht in summer 2006.

Another good day for Martijn. He drank one cup of bullion very slowly and produced his first "bagged bowel movement" - an important accomplishment heralded by his medical team! We had his massive sand bed shifted so that he could face the television, a service that we began today as well. Also, they constructed an apparatus over his bed with a hanging metal triangle so that mercifully he can lift himself ocassionally providing moments of relief from the flat on his back position. And, they took him off the oxygen and clamped the stomach tube. However, they left both tubes in, just to be sure he's on his way with lung capacity and eating, respectively. His wounds continue to drain properly, so such as it is, Martijn is making progress.

Spending the early morning and afternoon hours alone together was almost cozy. When mother, Marcel and his youngest brother Noel arrived, I felt cramped, and actually a bit uncomfortable. It felt too busy. I sense that Martijn needs more quiet and we agreed that tomorrow we'll make a better plan about who comes at what time.

There was a little break tonight. Our friend Frank visited Martijn at the end of the afternoon bringing nice books on cd and we left together to have a little dinner out. A moment of normalcy in a sea of abnormal.

My stress peaked today - a visual migrane and extreme intestinal disruption lowered my energy level significantly. Thankfully I have a shiatsu sheduled for tomrrow as well as a trip to the cancer support organization here, the Toen Hermans Huis, that my dear friend Ursula scheduled and will accompany me.

This week brings the removal of the epidural which they delayed until tomorrow and the pathology results from the tumor on Thursday. My brother-in-law, Jan, will return to be with me for that momentous moment. I hope for a good night's sleep for both of us and each of you. Sweet dreams, Suze

There’s a Hole in Bed Where You’re Supposed To Be

Thérèse & Rob Frank relax with us at our former apartment in Maastricht.

As predicted last night was heavy for Martijn – he didn’t process the food and had a very very bad night vomiting. This is dangerous on two accounts – when you are lying flat on back you can choke to death; when you have tenuous deep wounds everywhere in your lower track…well you get the picture. Happily, he rallied after the nursing team reinserted the stomach tube that drains the bile from his stomach. Today he was back on no food and water, marking the fifth day of such a regime.

Nevertheless, he had asked to see another set of very old dear friends, Thérèse & Rob Frank, now of Rotterdam. Martijn was Rob's roommate in university. We had a very nice visit and they marveled at Martijn’s resilience in the face of all this. Later, they drove me home where we shared tea and conversation. Before I headed back to the hospital, I simply collapsed, taking an unaccustomed 15-minute power nap. It was enough to refresh me. Our neighbor and dear friend Audrey drove and accompanied me to the hospital where Martijn rested again bathed in an autumnal sunset. Hopefully this evening he’ll rest well since tomorrow is a big day with the possible removal of the epidural (spinal tap) that has provided precious relief from pain. I’m certainly not looking forward to this next stage, but I’ll be there for whatever support I can muster. Basically, Martijn seems stable and progressing nicely post-surgery. His spirit is still very high and tonight he cried explaining that he truly feels the love of so many people helping through these stages of recovery. We are both beyond words of gratitude for you, a member of this healing community.

Before I turn in here are a few simple things that can cause my tears to flow: hanging one towel and washcloth in the bathroom where two sets always sit; seeing the dishwasher fill slowly with one set of everything instead of two; beginning to fall asleep and waiting for the nightly backrub that doesn’t happen and the “ribbit ribbit” chant we usually prattle every night before snuggling off to sleep. It’s not just about the pain, the fear, the uncertainty, you see, but about the tangible heart-rending absence of things familiar and beloved. I remember a line from a John Lennon song that goes something like: “…there’s a hole in bed where you’re supposed to be….”

Saturday evening

Martijn with Dorothé and Aad at the Belgian coast last October.

Another relatively good day. Martijn slept well and was in okay spirits in the morning. He had his first (soft) food and water in three days. The problem is that – bless his soul – Martijn’s infamous appetite won over caution. He ate a bit more than his weakened system with its massive wounds and colostomy bag could handle. Not to mention the fact that Martijn must lay almost immobilized and flat on his back. When I left him at the end of visiting hours he wasn’t feeling well and hoped that the quivers of indigestion wouldn’t accelerate during the night.

Still, good friends from the Den Haag, Dorothé and Aad, pictured above during a nice weekend holiday a year ago, paid a warm visit to the hospital. They offered to stay the night with me and when I was back from my evening visit to Martijn I found that they had quietly and generously cleaned our house – top to bottom!

While I report each step Martijn takes forward, I am acutely aware of the steps back. His taking in real food today meant the nurses could remove the tube that went from his nose to his stomach. This small triumph was offset by the fact that the team decided to reinsert his oxygen tube which they had removed earlier in the day.

When a person in forced to lie flat on his back his lungs often do not produce sufficient capacity. This situation merely highlights the continued dangers. Martijn is facing the reality that his wounds will take a very long time to heal due to the permanent deterioration caused to his tissue by the previous radiation. There is a slight chance the tissue cannot mend. Then, there is a risk for infection, ironically increased by being in the very hospital setting that now keeps him alive. Lying still on ones back increases the chance for swelling and collecting of fluids in the extremities and blood clotting. The list goes on.

Yet, Martijn’s spirit is still very strong. He mentioned that he had had an emotional morning and I told him I couldn’t imagine otherwise. Again he asked that I tell each of you how he felt surrounded by your love and wishes and that this powerful force will help him through the days, and nights, to come. Peace be with you. Susan

Friday evening

Martijn with Roberta and David in Eijsden, autum 2005.

Today was a good day. After his second surgery to stop the internal bleeding yesterday, Martijn rested through the night enough so his medical team felt he could be moved to a regular room on the surgical floor. It’s a private room with a huge western facing picture window that overlooks the lovely wooded Maastricht countryside. This evening’s sunset flooded his room and we sat together watching glorious autumnal colours streak the night sky. Never was seeing a sunset more appreciated.

Earlier in the day his brother Janus, mother Geri and her life partner, Marcel, visited and we chatted happily aware that Martijn has won another day.

And, that is how it will be; I am deeply conscious of the fragile threads that link this strong and spirited man to his mortal coil. They are the tubes that currently feed him oxygen, hydration (as he is still not permitted food or water), and drain his fluids and surgical wounds from many orifices, natural and man made. My good friend Nancy said Martijn was like a soldier who had been blown apart on the battle field, only a soldier would not have been previously weakened by chemo therapy, radiation and wasted by the cancer itself. Being with him today, chatting as though he was not tethered to so many life supports was excellent for my spirit, but after yesterday’s frightening realities, I understand the paradox of appreciating each new day while respecting the tentativeness of everything.

David Fey departed this morning. I simply would not have made it through these last days without his absolute friendship and quiet, steady support. He complimented my brother-in-law, Janus, who knew what to do, what to ask, when to be where. They allowed me to concentrate only on my love for Martijn, the greatest gift at this time. Completing the triage trinity has also been our guardian spirit Barbara Greenberg, anticipating the needs of sustenance and transport. It is as though she possess a spiritual GPS.

It is very late here tonight and I’m at once exhilarated at the capacity Martijn has to regenerate, but more, to soar in this moment; at the same time I’m exhausted to my core, reaching for more energy to endure this journey. And the moment I doubt my ability to replenish, the palpable field of energy that fills Martijn and me with light and life buoys me. You have created this force field. You are literally participating in this road to recovery.

If there is any lesson in this ordeal, it is that the human capacity to love conquers fear and loneliness and stimulates healing. You are so integral to our survival - so willing to walk this path with us. Before I left Martijn this evening, bathed in the fleeting light of sunset, he turned and said to me, “Please tell everyone that I feel their love and support and wish to be able to return it.” And, he added, his humor healthy and in tact as his body is not, “I also wish to sit on a terrace with an ice-cold Hoegarden beer with a sliver of lemon!” Here’s hoping he gets all his wishes. More later.

Thursday evening

Martijn on Monday evening before surgery

This morning began badly, with news that Martijn had experienced internal bleeding during the night and was back in surgery. After three hours, the surgeon reported they had stopped the bleeding from a blood vessel in his abdomen, and that he was back in the recovery area. When we visited, he was sound asleep; small wonder after eight hours of surgery the previous day and then this additional procedure this morning.

We heard a slightly different story from the surgeon today about the status of the cancer. She said they had removed the whole tumor, but that they still needed to do an analysis to see if there was more cancer. In any case, we will not have the results of this analysis until Thursday. So, in the meantime, the focus is entirely on Martijn’s recovery from this extensive, two-stage surgery.

When we visited him again after dinner, Martijn was awake and sounding very much like himself: complaining about the care at the hospital and criticizing various political leaders, past and present! It was very reassuring, as you can imagine. His color also looked good, but it was clear that his body is badly depleted by this whole ordeal, and that what he needs most of all right now is to rest and heal.

They are planning to move him back to his private room in the morning, and we expect that he will remain in the hospital for at least three weeks. They have him in a very special bed that uses sand and air to support him comfortably and facilitate the healing process. We don’t expect to learn anything more about the cancer situation until Thursday next week, but we will continue to post updates. If you wish send cheerful cards, notes or photos, as we will post them in his room. Martijn will not be able to use email for quite some time to come. But if you like, please post comments on the blog. Suze will read these.

Wednesday evening

Martijn the day before surgery.

Martijn came through over eight hours of surgery well, with a strong heart and vital signs. When Suze and Martijn’s mother and brother visited him in recovery this evening, he was smiling and told them he was ready to begin his new life. That is the good news. But the tumor was much larger than the surgeons expected, and they were unable to remove all of it. We expect to learn more tomorrow about the extent of the remaining cancer, and the options for its treatment. We will post more information as soon as we can. In the meantime, thank you all for continuing to send your love and support.

Wednesday morning

Martijn, Suze and friend David Fey enjoy a stolen moment before the surgery.

On Monday night we feasted on a lovely home-made meal, prepared by Barbara Greenberg, an artist in the kitchen as well as the foundry. At Martijn’s request, we watched some silly TV, and focused on the beauty of the present moment. It was a perfect, quiet evening for Martijn, fully aware of all those who are with us around the world.

Tuesday morning we packed him up a home-made lunch and stayed by Martijn’s side at the hospital through the parade of specialists who arrived to explain what would take place the following day. At the end of the evening, we left Martijn to share some time alone with his Mother, Marcel and brother Janus.

Today our thoughts and prayers are with the team of surgeons and care givers to guide them in their attention to Martijn through his surgery and recovery. We know your thoughts are with us, and we will post again when as we learn more.

Suze & David

At the hospital.

Martijn's Corner

Here we are again, healthy and happy at a ball hosted by the European University Institute iin Fiesole, Italy, high above Florence, where I served as an intern in Spring of 2005. Martijn made the most of our stay here, walking miles each day from our pleasant flat in the Rifredi section of Florence up up up the steep and lovely hillsides to meet me by lunchtime in the Mensa of EUI's famous Badia building. We stand in its courtyard in this photo which taken on Midsummer Night's Eve.

I will publish news of Martijn's progress post surgery here. So, rather than sending out another email, if you are interested in how he managed, please check here later in the day on Thursday, September 27th European time. Maastricht is 6 hours AHEAD of America's east coast.

Think of us this way - happy and healthy - the way we would like to be again.

Who Answers the Phone When I Call Europe?

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I interviewed author and scholar Jeremy Rifkin on May 9th when he came as the keynote speaker of the prestigious Schuman Lecture, centerpiece of Forum Maastricht, Maastricht University's annual conference on European affairs. This year the lecture and forum marked both the 50th anniversary of the Treaty of Rome, which formed the foundation for the European Union, and the 15th anniversary of the Maastricht Treaty, which is credited with creation of the current European Union and establishment of the Euro currency.

In these two short segments, Rifkin describes how the EU functions as a flat highly interconnected network: “What is the EU about? … it’s like Henry Kissinger’s famous quip, ‘If I call up Europe who answers the phone?’ The fact is if you live in Europe long enough you know that everyone answers the phone – it’s a party line, and they all have their own agenda and they have to listen to each other. So in Europe no one can dominate the game. It’s a network. In other words the Brits, the French, the Germans can’t dominate the game, the Norwegians can’t, the civil society groups, and even the companies can’t. So each constituency, each group has to find a way to optimize the interests of the broader agenda in order to get their interests included. It’s terribly slow, completely distributive and there’s no plaque that says, ‘The buck stops here’. But as excruciating as it is, the network governance fits the sensibilities of a distributive world.”

In the second shorter clip Rifkin maintains that there are only two superpowers today, not five, the US and the EU. "The EU is a politcal unit and think that Americans need to understand that."

Faces of 2006

My life revolves around the people in it. Understatement would be to say I'm a people person. 2006 was rich with the gifts of quality time with those I love the most. Martijn and I spent a lot of time simply "hanging out", an activity that's highly underrated. John Lennon knew this when he wrote the line, "just sitting here watching the wheels go 'round and 'round...." Our relationship has deepened through the ability to simply "be" together. And we see mother, Geri and Marcel almost weekly. But that's only a small part of the year. In February, when I began this blog, we had the bittersweet honor of simply being with Aunt Ada in Florida when she passed. A great lady who led a great life and had a good death. We spent time with my cousins, Sarae and Stan, April and Chris, and with Cindy and Vince. Also on the same travel we saw the Minnesota gang. In May I spent true quality time with Sara and Allan Crimm and family, my counsin Hannah, Nancy Carolan, Barbara Craig, Linda DeAngeles, Mary Grace Gardner, Phil Goldsmith, Joe Smith, Bob Ingram, David and Roberta Meyers and family. At home in the Netherlands there were visits from Tom, Theresa and Lilly Griffith, Bob Ingram adn Yulan San, dik Bolger and Diane Berthel, plus scores of activities with old and new friends here including Ursula Glunk, Krista Knopper, Jang and Marion, Christina and Tom, the EPA crew, and new friends Casey O'Dell and Jerome, Barbara and Pawel Greenberg Kromholz, Trish Flannery and Olena. My trip to California for certification in Spiral Dynamics Integral included time with my dear old boss, John Quiter and wife Elaine, Leslie Mogul and Bill, and a long over due reunion with old pal Cherie. We see brother Janus, wife Irma and Tjeu and Leven, and sister Elle, husband Paul and Merel, Jonnie and Jolijke quarterly. So, people people my life, and I enter the New Year a very rich and happy person for it.

Family Portraits 2

My cousin Hannah, another of Aunt Ada's daughters, and I were raised like sisters. During our early years we were collaborators and co-conspirators, inventing wonderful games and even "bathtub" productions such as one named the "Suze Mermaid Show," where we created characters from floating toys and washcloths to entertain my and her mothers who formed our sole audience.

Here's Hannah with her daugther Johannah and grandchildren.

My University of Maastricht Master's of European Public Affairs 2005 Class Portrait

Here we are - the University of Maastricht Masters of European Public Affairs (EPA) Graduating Class 2005. Luckily, one of the students snapped this cherished class portrait on the steps of the European Parliament in Brussels during our class trip in February 2005, (because no one took a full portrait of us when we actually graduated in June 2005). Twenty-eight students from 17 countries were my colleagues for this intensive 10-month dip into the background and machinations of the integration process of the European Union that, appropriately, began officially right here in Maastricht. The founding nations were Belgium, Luxembourg, the Netherlands, Germany, France and Italy in 1958. Later Britain, Denmark and Ireland signed on, followed in a 2nd stage by Greece, 3rd by Spain and Portugal, and 4th by Austria, Finland and Sweden. Those stages ended with the Treaty on the European Union, also called the Maastricht Treaty, signed here in 1992.

The well-publicized last stage opened the doors to former Soviet-controlled and Balkan countries including Czech Republic, Slovenia, Slovakia, Poland, Hungary, Estonia, Latvia and Lithuania, as well as to Cyprus. Our line up of nationalities included four from Poland and Germany, three from both the Netherlands and the USA, two from Bulgaria, and one each from Austria, Georgia, China, UK, Ireland, Lithuania, Serbia, Cyprus, Moldavia, Italy, Macedonia and Spain. The average age of my classmates was about 28, and of my professors and lecturers, mid-30s to mid-40s, making me an unwilling 'senior statesperson'.

The best way to learn more about my dear EPA colleagues is to look at our class Blog at http://epa2005.blogspot.com.

The Early Days

My father, Jack Schaefer, installment collector, gunslinger, Jewish tough-guy, was almost fifty when I was born. He was simply the best. No human on earth could touch the tips of his two-toned wingtips. Somewhere along the way, he met my mother, Emma, a full-figured, robust woman. I was told she was vivacious by the standards of the forties and her photos reveal a warmth and sensuality that sizzle. I grew up in a neighborhood called Stawberry Mansion in Philadelphia, moving at age 7 to Mt. Airy. Childhood was truly a mixed blessing. My mom suffered what was then undiagnosed post-partum depression, leaving her virtually unprepared to deal with the most simple tasks in life. This was not easy for a small child to comprehend, so home life was often fraught with pain and anxiety for me. But my father did his best to shield both me and my mother from her illnesses. And outside the home, growing up in Philadelphia's crowded neighborhoods, meant a childhood filled with friends and their protective parents. We spent much time visiting my father's large family and many, many hours with Aunt Ada and my cousin, Hannah. In reality, I had a network of parents and an extended family of friends. My childhood, in fact, was remarkable.

Animal Spirit Friends

Animal lovers have no need for suspension of disbelief about the other worldly powers of their animal friends. For me, Yin, Yang and Snoepje have been not only companions, but protectors of my mental, physical and spiritual well being. Like so many creatures who come to us, they are gifts, guides to remind us of what is truly important in a world that sometimes robs our focus from the bigger picture.

Yin was born on a farm in Minnesota and was my constant companion for 16 years. When Martijn joined our family, Yin chose him as his primary human. Whenever we were in our home, they were inseparable. Yin was our alpha guy, a warrior spirit with a wonderful sense of play. He was a lover, too, prone to warm whomever's lap was nearby. A definite equal opportunity purrer. Yin passed on at the end of 2005 and his spirit still sends protection and affection.

Yangy, Yin's litter mate, was a bit more grounded. He was kind of my summa wrestler guy, shy by nature, but deeply affectionate, he nevertheless was a fine hunter and could hold his own in any situation. Always dressed formally in his cute tuxedo outfit, Yangy lived a life of meditation and mediation. Yangy left us almost a year before Yin.

Miz Snoepje, a royal dame. Part Norwegian Forrest cat, part Empress of the Universe, "Snoop-yea" was our love child. Discovered in Pappa John Pizzeria, she made our cat and human family complete. When we relocated to the Netherlands, she and the Yin found a final home with a true cat worshipper, Stephanie Cunningham. Snoepje now lives the life of a regal princess in Plymouth, Minnesota.