Obviously Winston Churchill didn’t actually know us… but he seemed to be referring to Mark’s final year on earth when he said, “This is no time for ease and comfort. It is time to dare and endure.”

Of course he must have been speaking of World War II, but it certainly describes my husband. Mark was always afraid of chemotherapy. After his melanoma was surgically removed twenty years ago, the doctors asked him to undergo chemotherapy and he refused. Thankfully it proved unnecessary. Other than that, surgery has resolved all other cancer issues. It was very daring him to face chemo. During his final days he took my hand and declared, “I did all of this for YOU!!” I know how much he wanted to stay and how much he did not want to leave me alone. He fought for me.

I had devoted a year of my life to his constant care. I did it all for him and it was my fight as well. I fought for him. We both fought for each other – as individuals and as a team.

What happened to our fight? When did we surrender?

I am thinking back. On Thursday, June 20, we were in the ICU. Let me just say that I have spent many, many nights sleeping on a couch in a hospital room. Dozens of nights at Doernbecher with Greg, OHSU with Jackie, Doernbecher with Natalie, Huntsman with Greg and of course this past year with Mark. Never, ever has a health care professional come behind the “curtain” to talk to me before I was up and going. That morning in June I was just sitting up when the nurse came to get me. She said that Mark needed me and then escorted someone else that was in the room out with her saying, “Give them some time together.”

Mark told me that he was going to die that day. I was shocked. He was extremely earnest and was very intent on me understanding how much he loved me. We held hands and cried. “Please tell the children how much I love them,” he pleaded.

I didn’t tell them. I didn’t tell anybody. Death was not on our forecast, not yet. The doctors had told us that things were serious but not so bad that we needed to call the family. Mark did not die that day.

Fast forward one week. It is Thursday, June 27. We are out of the ICU and Mark calls me to him. He again tells me that he is going to die that day. I feel like this is an instant replay – his eyes are fixed on mine as he intently tries to express his love for me. I cannot believe this is happening. We hold hands and cry together. Again he asks me to tell our children of his love for them.

This time I tell them. Kimberly will drop everything, miss class and drive down. She will see what is happening and help her siblings to understand the situation. They all begin their journey to join us.

I have written about Mark regaining consciousness and insisting that we try another round of chemotherapy. I believe that this was the day that they began to administer methylene blue to stop the effects of those drugs. By now the palliative care team was making frequent stops in our room. Mark’s advance directive had said that we wanted full resuscitation and when he couldn’t express himself I was to make the decisions. Therefore everything was directed at me because Mark was not always lucid at this point.

In each conversation they would tell me that if Mark were to be intubated, he would likely never be extubated. As they explained this yet again on that Thursday Mark regained full consciousness and told them that he DID want to be intubated. He wanted to keep breathing. He made Kimberly promise that she would make sure that he kept breathing. He wanted to fight!

Was it on Friday that I agreed to no CPR? They explained in no uncertain terms that CPR attempts in the hospital are very violent and only 20% of patients on whom it is administered survive to go home. Something like that. Mark would never survive. I agreed that there would be no CPR. By now David had joined us. He and Kimberly tenderly gave their support in this decision.

By Saturday the entire family was together. Mark was less responsive. The children could all see what was happening and they lovingly supported me when I finally agreed that we would not be intubating Mark. Everyone agreed that he could be taken to the ICU if the need arose. There he could receive more intense treatments not available on the floor.

Oh my goodness – how the tears flow as I remember those days and those decisions!

That night I could not sleep and I wrote this post:

No Words

It was around midnight when I wrote. I slept fitfully and at 3:00 a.m. I woke up feeling quite strange. Something was happening – I could sense it. I opened the door between our rooms and gazed at Mark. He was sleeping. Nothing was happening (but I still wonder about that). I wish that I had gone to sit beside him, but I was just so tired. I went back to bed and slept soundly.

At about 5:15 I woke up and realized something definitely was happening in the next room. I opened the door and this time there were all sorts of people scurrying about.

Mark was speaking clearly, “I am ready to go… “

“What is happening?” I asked of no one in particular.

“I am ready to go…” This time I registered the words that I heard Mark saying. His CNA was standing by him. She told me he had been repeating this phrase over and over for 30 minutes.

The PA, a very beautiful and gentle woman, was at my side. “Your husband’s body is actively dying.”

His pulse had risen to 190 beats per minute and they were preparing to take him to the ICU. Mark was “ready to go.” His body was “actively dying.” I began to tremble all over and someone led me to a chair next to Mark and wrapped me in a warm blanket.

“No,” I told them, taking charge of the situation. I knew the children would agree. “There will no need to take him to ICU.”

The medical team quickly melted away and we were left alone. From the time I entered his room until the time he left us it was 14 hours. I hope to share that story soon. For now I am just remembering how it felt to enter a room buzzing with activity and then to be left alone together. I have always loved being with him! I miss him so much!

We had dared. We had endured. We were a team. Mark had surrendered. I surrendered with him.