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.