Where's My Gold Star?

Tomorrow will be the anniversary of my husband, Brian's death. He was diagnosed with cholangiocarcinoma‎, a rare and aggressive form of cancer on May 7th, 2015 and passed away about six weeks later. He was 42 and I would be 39 for another month and a half.

I remember negotiating with him to hold on until my birthday. I didn't want to be widowed in my thirties. I didn't want to celebrate my 40th birthday without him. The pool was almost done and if he could just hold on until my birthday and swim with me on my birthday, somehow that would make it less bad. The reality of what was happening to him wasn't a part of my thought process.

I don't know if the doctors failed to help me understand or if I just couldn't comprehend it.

On our last day in the hospital, Brian walked himself with a walker and a little help to the bathroom in his hospital room. I encouraged him to try it because I thought he would need to be able to use a walker while he was in hospice care at home and I wanted to make sure he knew how. It must have caused him excruciating pain, but he did it. When it was time to walk back to his bed, he looked at me and asked, "How am I going to do this?"

I assured him that the bedside commode at home was inches from his bed and that if he could do what he had just done, he could do everything he needed to do at home. With the help of an orderly, he walked back to his bed. It was the last time he would ever walk.

The next day he had a drain to help alleviate the pressure in his stomach from the ascites, after that he felt pretty good (for a person dying of bile duct cancer). All of his dietary restrictions had been removed, so he asked me to get him a big breakfast from the McDonald's up the road.

I think in 21 years of marriage, I've never gone through the drive through without something going wrong and this was no different. I was so happy that he wanted McDonalds. Food had been such a struggle and he hadn't wanted to eat...but I wanted to get back to him. I was in a big damned hurry because I was missing out on the limited time I had left while I sat in the drive-through line. I didn't know that it would be his last meal. I might have been in less of a hurry and made sure the order was right before I drove off. Instead, as has been the case every time I've ever ordered breakfast from McDonald's, I didn't have the hotcakes.

I could see how disappointed he was and offered to go back, but he said he wasn't that hungry and it would be ok. A year later I'm still sick to my stomach when I think about messing that up. If you think it wasn't important and that he probably didn't care, you are wrong. He didn't care about the pancakes more than he cares about me. He wouldn't want me to be upset over it. But I promise you that he cared and that it was a huge disappointment and it was entirely my fault.

Somewhere around the middle of the day the hospice transport folks came and put Brian on the kind of gurney that goes in an ambulance and they brought him home.

While he was in the hospital, California Pools had been very busy pouring concrete and trying like hell to get the pool done in time.

The hospice transport guys didn't want Brian to have to walk at all so they lifted him up like you might do with a couch to get him around the area in front of the master bedroom. While he was lifted up he could see the pool through the windows and door. I don't know if he did actually see it, but he looked like he was looking out at it at that moment. There was a lot going on and the transport experience had not been good for him. He was in pain and confused and I was just trying to make sure I understood what I was happening and we never got a chance to talk about the pool. So I don't know if he saw it. 

When the nurse came, she wanted to know our priorities and we told her it was very important for him to be able to go in the pool with me on my birthday. We told everyone we encountered that our goal was just to swim together on my birthday.

I feel like someone, somewhere along the line, should have told us how completely unrealistic that goal was. I guess they didn't know. No one really accepted, I think even the doctors and nurses, didn't really accept that cancer could kill a strong and generally healthy 42-year-old man in a little over a month. It probably seemed reasonable that he would have at least another 3 or 4 weeks. 

But he didn't. 

So now that he was home and in his own bedroom, but he wasn't in his own bed. The hospice bed had a footboard on it and it was about 4 inches too short and he couldn't get the angle right to be comfortable so he was very agitated, but he tried hard not to let me know it. I was agitated too if I'm being honest. It was a lot to deal with. There was no doubt he was going to die. The only thing we had to hope for was more time, but he was in unimaginable pain and so uncomfortable and struggling to catch his breath and the pressure kept building up in his stomach and there was nothing I or anyone else could do for him.

His last day in the hospital was a pretty good day. He was as close to himself as he'd been in a week. The medicines were doing their job, his pain was managed and he wasn't loopy at all. He was able to talk to me and wasn't as drowsy. You may recall he was even able to walk himself to the bathroom. I don't know why, but Hospice of the Valley decided to change every single one of his medications. Instead of Dilaudid, they gave him morphine. Instead of Xanax they gave him Valium. There was an anti-nausea medicine as well but I don't remember what it was - they changed that one too.

I understand that he died of cancer and that the change in medicine did not cause his decline, but he was doing good on his hospital medicine and he did terribly on the new medicine. His pain was unbearable, we had to wait hours for a doctor to increase his dosage and it still wasn't enough. He was hallucinating and a little paranoid and unable to really engage with me or anyone else. He wasn't himself and I don't know if it was the drugs or cancer, but he was good the day before with the old drugs and even walked himself to the bathroom. He was miserable and edgy on the new drugs and I will forever and ever hate them for that.

Hate.

There was no reason to change his drugs.

He was in a restless sleep for the majority of his last days. I have Xbox one with Kinect in the bedroom and in the living room so I set up Skype as a video monitor and watched him struggle to sleep throughout the rest of the day. I slept in our bed beside him on his last night. Every hour he would wake me up to give him more pain medicine and he would say, "Tricia is it time yet?" or "Tricia I think it's time for more morphine"

I was so tired and as much as I don't want this to be true, when he woke me up for the 3 a.m. dose I recall for a moment being annoyed by it. That's how selfish I am.

I don't really remember much leading up to his final moments. It was a struggle to manage his pain and keep the liquid drained from his stomach.

At one point he decided he wanted to sleep in his own bed and managed to crawl over from his cramped hospice bed to the big king sized bed.

We tried to make that work, but we just couldn't get the angle right on the pillows so he could breathe. I'm glad he did it, though because it gave me a chance to cuddle up next to him with my head on his shoulder one last time.

But he couldn't breathe and I could tell he was fighting. I felt like he was fighting just for my benefit and as much as I wanted him not to be gone, I just couldn't stand to see the pain on his face and to watch him struggle with every movement and breath. 

I told him he didn't have to fight if he didn't want to. That I would be ok and he didn't need to hold on for my birthday or anything else.

There was a nurse there when we moved him back to the hospice bed. I don't recall anything about her. I remember the one before her because she reminded me of mom, but this one I can't bring anything about her looks to my mind. You'd think you'd remember the person who tells you you've got only hours left.

Brian's hands and feet had gotten ice cold even though he was sweating and said he was hot. The thermostat had been set at 72 in an attempt to help him feel cool, but nothing worked. His hands and feet were cold, so I covered him with a blanket.

I told him, "I know you think you are hot, but you're freezing." Then I covered him with the blanket and he replied, "Thank you. That's much better," and gave me a little sarcastic grin. I love this moment because it felt like us for a second.

The chaplain was called and Brian said he would like to say the Jesus prayer with the chaplain. I had previously told our friend Jason that he should wait until we got the medicine worked out and brian was less agitated before he came to visit, but I called him back and told him to come over right away. We called Scott for a video chat we had been meaning to set up for a few days. 

It's interesting how even when you know you have no time, you think you have more time.

Brian coughed up some bluish stuff and caught me off guard. I didn't have the little bucket thing ready and it was on him. As I cleaned him up, I promised I would be ready if it happened again.

Jason was there now and we were all just kind of hanging out. I started to get upset and Brian just said, "No, no." So I quieted down and he reassured me that "Today is not the day."

A little while later he started coughing stuff up again. In my mind it's blue, but I can't imagine why that would be. I was ready this time like I said I would be but there was a lot of it and the container I had wasn't enough. I called for my mom. I think my words were "Mom, help him!"

I didn't quite get it. I think it took us all a minute to catch up and understand where we were. Mom instructed Jason to get the suction machine and she was trying to clear the liquid and help him breathe. I had gone around behind him to lift his chest so that he was sitting forward and Jason was I think trying to turn up the suction.

When I figured out what was happening, I asked Jason to come around and hold him up and I ran around to face him. His eyes were all over the place and then they were still. Everything was still. Mom said she thought she felt a faint pulse but couldn't tell.

I was screaming at Brian, "Look at me! I wasn't looking! I didn't know! I wasn't looking! Look at me!"

He then jerked, took a deep breath, looked right at me, coughed a few more times and then his eyes were vacant and I knew he was gone.

I don't know if he intentionally smiled at me with that last look, but he did smile. I don't even know if he knows that he looked at me, but it felt meaningful. It felt like he was engaged at that moment and saying good-bye.

My first words after his death were along the lines of "Please don't leave me. Please. I can't do this." Or something like that. But then I remembered I told him he could go, so I apologized and said I'm ok. I'll be ok. I remember just screaming for a minute and sobbing while Jason and my mom tried to comfort me. 

The chaplain showed up a little bit after that and Rob and Allison came over. I called some people and my mom called some people. Robert came over. I don't think anyone else was there. My dad was flying in the next day.

We sat with Brian's body and the dogs came up and said their own goodbyes. They stayed with him as we dealt with the logistics of the situation.

I couldn't be there when they took him out. I knew from when they brought him home that they would have to treat him like furniture and I just didn't want to have that as a memory.

Jason sat with me in another room while Robert helped my mom get everything taken care of.

I came out and watched the ambulance drive away and then went back into the house not quite sure what to do with myself.

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I was told that I would be numb for about a week and that my mind would start to come back after a month or two. I was advised not to make any decisions for at least a year.


I don't know that anyone ever actually set the expectation that it takes a year to grieve a loss of this magnitude, but for some reason, I thought I would be put back together and ready for the rest of my life. I thought after a year I would get a gold star and graduate to some advanced level of widowhood.

A lot has changed, in the past year and I'm much better at living my life with all of this rattling around in my head, but it's still in there and on the anniversaries and birthdays and holidays it overpowers any other thoughts which makes it really hard to function.

I get flashbacks of the traumatic moments. I relive the emotions and am overwhelmed. I think sometimes the pain of it is even deeper in these times because I have a greater understanding of exactly what was lost.

I am not a fully functional human this weekend and expect tomorrow to be the worst day since the last worst day. 

Please recognize that I'm simply documenting this experience and not asking for help with it. Sometimes being alone for this stuff is better. I can experience the emotions at a level of intensity that I would just never get to with another person around and there is value in experiencing these things at that level.