Journey To The Center  

This evening, just a couple of hours from now, it will be the sixth anniversary of Don’s death. Each year, I put up a few photos and try to write something that shares a few memories and also helps all of you to know what kind of person Don was. This is a really difficult task for me. Just looking through my photo library makes me very sad. Also, it makes me wonder why I didn’t take more photos of him — although actually, I did take many. I just wish I had more.

Anyhow, each time I write this annual post, I try to think of something new – something that I haven’t said before. This year, I would like to write about how things were in the last months of Don’s life. I feel that I need to write about that because it seems rather like I’ve woven a tapestry with a big hole in the middle — the hole that speaks of those last months of dealing with terminal cancer. In many ways, maybe those are some of the most important days in our almost 35 years together. Some of this will be hard for me to write, and perhaps hard for you to read. Of course, no one is obligated to do so.

As these first few photos illustrate, Don was a very strong, healthy man. He was a never smoker. He ate well — well, we both did. We hiked, snowshoed, cross-country skied, canoed, rode our horses, and were pretty much on the go all the time.

In November of 2007, Don became very ill. He had been coughing for awhile, but the doctors chalked it up to hay fever and asthma. They prescribed inhalers and other meds. However, his condition continued to worsen. A CT scan was scheduled and that revealed shocking results – a tumour in one lung, smaller lesions in the lung, and clear signs of metastasis in his spine and rib cage. Even the respiratory specialist he was referred to was shocked and perplexed. The CT scans and MRIs were showing terrible things going on in his body, and yet he scored about as high as a person possibly can on the respiratory tests even with one lung almost blocked by a large tumour. It was all very difficult to accept.

While waiting for further testing, Don became very ill in late November. I rushed him to ER one evening and he was admitted with extreme sepsis, caused by a lung infection associated with the tumour. It was touch and go whether he would survive. However, after a couple of days in ICU, he was moved to the cancer diagnostics centre and thus began a week of MRIs, bone scans, brain scans, blood work, a bronchoscopy and other tests. The results showed Non-Small-Cell Lung Cancer (NSCLC). The cancer was all over the place. As the radiation oncologist said, “There is no point telling you which bones have cancer – there are too many – so let me tell you which ones don’t.” Anyhow, I won’t go into all this — I think I’ve written about some of this before — but the results were so grim as to be almost impossible. One doctor after another came into Don’s room to deliver the latest blow. Eventually this struck us as hilarious in a bizarre way. It was like something out of Monty Python.

Through all of this, we held up remarkably well. In fact, almost every doctor made a point of telling us that we were really unusual — unlike almost any other couple they had ever met. We didn’t break down. We asked sharp questions. We didn’t give them shit or scream at them. We remained upbeat and optimistic in the face of the horrendous. Anyhow, it was an experience.

A few days later, Don was released. He had a PIC line to deliver very powerful IV antibiotics. During this time, he took a very heavy round of radiation on the tumour. He could not begin his first line of chemo (Cisplatin-Vinorelbine) until he was entirely recovered from the sepsis or the chemo would likely kill him. It was February before he could begin the chemo regimen.

It was good for me to assemble these photos today. The top bunch were all taken the summer before Don became ill. He looked and felt pretty good other than the persistent cough. The photo immediately above this paragraph was taken after Don had begun his first line of chemo. He continued to feel pretty good. We worked hard to develop a diet that would keep him very strong, healthy and retaining weight as lung cancer is a bastard for making people lose weight and become feeble. Don did all kinds of exercises each day – working out with weights, walking back and forth on the lane between the house and the barn. We actually got out and did a bit of hiking around when the snow was not too deep.

During this time, we both tried very hard to remain upbeat. It was difficult, especially when Don was taking prednisone (steroids) before and after a chemo treatment. He would become very emotional and cry at almost anything sad that came on the television. He loved watching the James Herriot “All Creatures Great And Small” television series, but I secretly cursed it because there was almost always some sad part that would trigger a terrible crying jag.

I contrived ways to surprise Don — like stomping out the “I LUV YOU” heart on the snow so that he would see it as we departed for a chemo treatment on a snowy morning. Believe me when I say that I probably pulled off some of the greatest acting performances of my life during that time – being cheerful 24 hours a day with Don, the doctors, the nurse practitioners, the home care nurses, and anyone else who touched our rapidly declining world. Again and again, we were told how extraordinary we were. We didn’t feel very extraordinary. I think we just wanted to try to help each other to get through what was, for both of us, a horrific time.

Don’s first line of chemo went so well that we felt some sense of optimism. However, as soon as those treatments ceased, the cancer began to grow very aggressively once more. It was decided to go on to a second line — this time, the drug, Taxotere, which is used to treat breast cancer. It totally bombed and after a couple of treatments, had done so much damage to Don’s heart that it was never good again and he had to take three different heart medications to keep him alive. It was all very devastating.

However, if you look at these photos taken in our living room, I think you’ll have to admit that Don looked pretty happy and cheerful. He was almost always this way — even toward the end. As I wrote above, it’s good for me to look at this photos once more — I never do as they hurt me too much — but good to see that he looked quite happy, well, and comfortable with Sabrina. All through this time, he could only sleep on a recliner chair and never in bed as the cancer in his spine made it too painful to lie down. I kept adding more and more layers of comforters to the chair, trying to make it softer and softer as the pain gradually became worse. We used to joke about how it was becoming rather like the story of the Princess and the Pea who had to have many mattresses to sleep on.

After the Taxotere fiasco, the last ditch effort was to try Tarceva – a once a day targeted therapy oral drug. Unfortunately, it was reserved as a third line medication which could not be tried until you jumped through the hoops of doing the first two lines. I’ve always been kind of furious inside about that because it was the Taxotere that really ruined Don’s health. Once he began Tarceva, he got all the horrid side effects — the rashes and sores in his mouth, but the pain in his spine began to clear up quickly. However, it was all too late. The cancer in his lung had progressed too far after not responding at all to the the horrible Taxotere drug. However, there was actually a period of about two days when the pain in his back was lessened to the point that he slept in our bed for the first time in months. I felt such relief. Unfortunately, that was short lived. He choked on a fruit smoothie one morning and I ended up having to take him to ER. His blood oxygen level had dropped off dangerously low (I kept a sensor to check it several times a day and saw the level tank suddenly). That day, I asked him if he wanted to just stay home or if he really wanted to go to the hospital as I was pretty sure they would keep him there. There was an unspoken message here. “You may never come home again.” He said to wait awhile while he thought about what to do. A little while later, he said he wanted to go to the hospital. We said goodbye to our dog, Sabrina, and I took him there.

The doctors in ER said he would have to go on a ventilator. That was the only choice. He would have to be sedated and they warned that he might never be able to come back off of it. I neglected to mention, but this is important — that Don had lost the ability to speak in more than a whisper about 4 weeks previous to this time. I leaned close to him to hear his wishes. He said, “I will try this. What other choice is there?” I nodded my head and told the doctors. They brought a clipboard with a piece of paper for Don to sign. He signed it and then they put an oxygen mask on him and began the process to sedate him and put him on the ventilator. I have a memory that is so vivid to this day. It is of Don smiling so bravely and giving me a big thumbs up as they put the mask on his face. Something about it always reminds me of some test pilot on an early super sonic jet, getting ready for take off. That was the last time that Don and I were able to communicate. From this point onward, he would be strongly sedated.

He was moved into ICU and received incredible care. I stayed by his side almost 24 hours a day, sleeping in a recliner chair by his bed. The staff were wonderful. I think back to all of them and still remember each and every one. I used to go home to feed Sabrina and be with her for a half hour twice a day — quite a drive as we were about an hour from the hospital. On one of those days, I dug up a folder of my 11×14 photos of dragonflies (left overs from a natural history museum exhibit of my work), and brought them in to give to a bunch of the staff. They were thrilled and asked me to sign them. Something about all this helped me to feel that this whole hospital thing is not entirely an inhuman machine. People really do care and the staff who work in these places are very special.

At one point, there was an attempt to reduce the sedation being given to Don, but he became extremely agitated. I happened to have left to go home to feed Sabrina. I returned to the hospital that afternoon to find Don tugging at the ventilator hose. His eyes met mine for a second and I could immediately sense the fear and fury. I stepped between him and the nurse and ordered her to increase the sedation immediately — which she did. He calmed down quickly.

A day or two later, one of his doctors told me that he thought Don was doing a bit better and that they thought they could remove the ventilator after the weekend. That seemed unlikely to me, but I was willing to believe anything. He advised that I go home and get some rest. I was pretty exhausted by this time and Sabrina was doing very poorly — not eating and growing weaker by the day. At midnight, I drove home and fell asleep on the sofa. About 9 a.m., I received a call from a nurse. She said that the doctors needed to see me right away. I asked why and she would not tell me. I told her to get a doctor on the phone as I wanted to know what was going on before I drove at breakneck speed to the hospital while still half asleep. I guess that must have scared them because a doctor came on the line after a minute or two. He said that Don had taken a turn for the worse and that there were matters to be discussed. I said I would be there within the hour. I called my mom and brother, Randy. They said they would meet me at the ICU.

When I got there, Randy accompanied me to the meeting with the doctor. He said he had done an emergency bronchoscopy to see what was happening. They also had X-rays up on a screen. He said Don’s lung was now full of cancer. They wanted to remove the ventilator because he was just getting worse and he felt it was wrong to carry on as his body was dying. I had actually realized that a day or two before. I could tell by Don’s appearance – the swelling in his legs and feet – and various signs on the heart and respiratory monitor screens. I studied the X-rays carefully and could see the extent of the cancer. There was no clear area remaining in his lungs. I spoke calmly, “There’s nothing left to do, is there?” The doctor replied softly that this wasn’t really a decision — that the cancer had decided all of this for me. I remember nodding my head and looking to my brother who looked distraught, but supportive. I’ve always been so glad he came there with me. I know it is about the last place he wanted to be, but there he was.

We went to Don’s room and I sat with him. In awhile, a respiratory technician came in and explained that the ventilator would be gradually stepped down. That’s what happened. I would not say it was uneventful. The machine had a ridiculous warning buzzer that kept going off every minute or two. I became greatly angered by it and my brother stood by ready to hit a reset that would stop the buzzing. I put my arm around Don’s head and spoke to him. I observed that as I spoke, his heart rate would increase and stabilize. I told him that when this whole mess was over with, we would blow this place and take off. His heart rate strengthened more. Then I would stop talking and it would drop down and become erratic again. This went on for awhile – me speaking and then going quiet. Finally, I said that he should just rest and sleep. Soon after that, he passed on.

I remained calm — sad, crying, but calm. I have seen all kinds of reactions in those ICUs – people screaming, yelling, falling to the floor. I did not feel that. I think I felt relief that this whole terrible thing was over with and that Don was now free. I spoke with his nurse – she gave me a big hug and told me that they would remove the ventilator and lines and then I could return. I went out in the hall and called my best friend to tell him what had happened. He had already told me that when Don died, he would catch the first available flight from Portland, Oregon, to come and help me deal with everything. He is a great friend – the one person who called Don every week to talk during his illness. Anyhow, when I returned to the room, my brother and mother were there with me. I passed my hands back and forth over Don’s arms and legs and body, memorizing how they felt to me. I still remember how he felt. Muscle memory never forgets these things. Then I noticed a pair of scissors on the bedside table. I suddenly knew what to do. I picked them up, held a large part of my hair out and away from my head, and chopped off a huge length. My glance fell upon my brother. He looked stricken. I coiled up the hair and placed it into the palm of Don’s hand and pressed his fingers closed over it.

I left soon after. I drove home alone to look after Sabrina. That night, I actually contemplated ending things. I had arranged it so that I could do so. However, when I saw how weak and pathetic Sabrina was, I realized that I’d have to kill her too. That seemed like a terrible thing to do, so I decided to hang around for awhile. My friend arrived the next day. He watched over me constantly. I have a funny memory. Interesting in a way.

The night after Don’s death, I fell asleep sitting up at one end of the sofa. I say “asleep”, but it was more like dreaming while awake. I felt a growing sense of warmth around me and pressure, like being hugged and held. It was a good feeling — a feeling of well-being. In the midst of it, my friend came racing down the hall yelling, “Where are you?!! Where are you?!!” He was in a panic. He’d fallen asleep and awoke, not seeing me around, and thought I must have gone outside to end things. I looked up at him – slightly sad that he’d broken whatever weird magic this was that had come over me for a short while. It was gone. But that’s okay. I’ve never felt it again. I sometimes wonder if Don dropped by the house to say goodbye. I’m an atheist, so that kind of thing seems a little out there, but it did seem real enough at the time. Who can say what things are real in this world and beyond.

Anyhow, I hope this post doesn’t seem too maudlin or bizarre. It’s just how things happened to two people who never really asked for or deserved such an experience. Even now, the whole illness thing seems impossible and unreal – almost like it happened to someone in another life. I still feel very close to Don – even at six years later. I keep a favourite photo of him next to his ashes. I speak to him briefly at least once a day, kiss my finger and brush it gently across his cheek. If that seems strange to some of you, well, then you probably haven’t experienced such a great love and such a loss yet.

Love to you always, Don.

Bev