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.