A caregiver's experience with glioblastoma

Brian Bulkowski, 2003
All rights reserved

I mark time now as before Ann, during Ann, and after Ann.

Glioblastoma is a terrible disease. The general arc of my story is similar to those who have a partner with AIDs, back when there weren't effective treatments. The diagnosis is a diagnosis of near-certain death, and soon. It's a horrible wasting death, having your brain taken apart piece by piece. I've written a general discussion of what I learned about GBM on a different page.

This page is my story. It tells my experience, that of losing a partner to a terminal disease in what should be the prime of her life. I haven't focused on my story before. When Ann was sick, I often said that there was no Brian - there would be time for Brian later, right then we were all about Ann. We were both living for her, living with focus and intent in her life. That fight is now over, and I have to find a way to keep living, keep growing, and keep being the Brian that she loved. Now it's time for Brian.

A partner - not a friend, not a child, not a loved one, but my partner

Ann was my partner. Before the diagnosis, we did everything together. We played, we laughed, we cried, we were there for each other. We were cheerleaders, best friends. As the symptoms got worse, I kept on her to get it checked out, saw doctors with her. After the diagnosis, she placed her entire faith in me - not her parents or brother, but chose me as the one who understood her and her wishes best. She and I were the core of the fight, and I fought as she wanted, with every ounce of courage, intelligence, and sentience I could find within myself. I gave her not just the fight I wanted, because I wanted her alive - I gave her the kind of fight she wanted. At the end, I made the tough decisions, and helped her die as well as I could imagine. Her death had a strength, and a story, that was inspirational.

Which is as she wanted it.

But that was our fight - and now I have to tell the story of my fight.

Near the end - giving up

Like many diseases, you take the medicine, then repeated take tests to see if the medicine is still working. The theory is that if it doesn't work, you can try a different treatment. You are constantly on pins and needles, guardedly watching for symptoms, hoping for a clean scan, hoping to be one of the long term survivors. Ann's case was lucky, in that she had an exceptional response to radiation, and we had been counseled against a surgical course.  Ann was 100% normal, 100% functional, 100% Ann. But we lived every day with this surreal knowledge of a growth in her brain, and a strong chance of her dying.

After good scans, euphoria. After bad scans, the black coldness and fear. The terrible tension and stress before the blood draws, and the sleepless nights and stress vomiting before the MRIs.

Ann believed that her belief was the factor that would save her. If she believed, completly and utterly, that she would live, then she would live. This method of fighting meant that I had to carefully watch every word I said. So many sentances might contain glimpses of recognition that she might die. I wanted to say "Ann, you may not have much time left, please organize your poetry", but she's have the opposite idea - that working on her poetry in that sense would be like giving in. The similar sentance, "Ann, no matter what happens, organizing your poetry would be great" might even be worse, because she might yell at me for both doubting her, and hiding that doubt.

What I dreaded, day after day, was the last meeting we would have with the doctor. Ann was so much about not giving up, and at some point, our oncologist would give up. That day finally came -- and went. Dr Prados and I had a long, clear phone conversation about what we wanted, and what Ann wanted. He voiced a message that was giving up, but also said pretty clearly that he didn't want to give her any chemo because he didn't want to mess up her last few days - or damage whatever fight she could muster. It was a careful and well crafted message, although for a while I was pretty bent about what I would call distortions in what Dr Prados laid out from a medical perspective. I played a part in those distortions, because Ann counted on me to ferret them out. I know Dr Prados emphasized the chance of blood clots to a terminal cancer patient for all the right reasons.

Over the last week I learned how to use the concentrated morphine. The visiting nurses helped a lot. The worst day was probably friday, when I had a real chance of taking her to the hospital and putting her on a ventalator. Part of me knew it wouldn't really help, but most of me struggled with the issue of what a fight was. I tried to have that conversation with Ann once. Would she like to stay alive as a vegitable forever, or have a clean death? Vegitable, she said. I knew her world view was out of step with current medical theory and practice, where we try to look at death as more a part of life, and that there is a time to come into the world and a time to go out. Ann's time to go out was clearly coming, and she didn't want to go.

I didn't want to see her go, but if she was going to go, I'd wave goodbye.

Ann died early on a monday morning - about 5 am. Friday morning before that was especially tough and sleepless. I had the decision of whether to take Ann to the hospital, or not. Every bit of medical and personal advice said no - but Ann trusted me because she knew I was the only person who really understood what she wanted, the kind of fight she wanted. Yet, weeks earlier she had strongly resisted being put in the hospital, and I wasn't quite sure why. Her statement was that if she went in, she wasn't coming out. That a hospital was a place to die. We had watched a movie a few months earlier, A Beautiful Mind, that left a strong impression on her. She wanted to have a fight like the man in the movie, where he was able to control his madness without a hospital.

So I decided not to go the hospital route. The nursing staff at Sutter VNA were great about sending us hospice nurses that weekend without us entering into a formal hospice agreement. Unfortunatly, the downside was that we never really communicated about what hospice service was. One element of hospice is no hydration, which I found to be really crossing the line. No feeding is one thing, but no water is another. Sunday night, before she died, I stopped to change her diaper, and it was dry. I knew what that meant - renal failure, or at least such extreme dehydration that there wasn't much hope left.

How to fight

In those last couple of days I worked with Dr Renneker. We were persuing a path of a more complicated diagnosis, one that wasn't just GBM, but something different. It was an area that I grew to feel was a missing point in our whole approach. Clearly Ann had a strange disease path, therefore maybe there was something we could tweak in the treatment. Dr Prados was not about tweaking the treatment - he wanted clean data for his study, and didn't want people doing unusual things. In retrospect, the fact that Ann got the coned down radiation treatment was part of what killed her - it grew in an area that got only a partial dose, thus increasing the chance of a stranger disease path.

I think I was pretty clear with all the health care people that, for me, I needed to feel that we were fighting the best fight, although I personally was of the belief that there wasn't really anything else that could be done. We were at the end of the fight, by that point. Ann would never again be what she was. Without the ability to read or write or turn pages - what would Ann have been? Ann, somehow, with her great spirit shining through.

I told all of them that I had a promise to keep, that I wouldn't necessarily fight this way for myself, but I would fight like this for Ann. All the doctors  understood. One example was the issue of suction. I wanted to make Ann's breathing as simple as possible. One nurse recommended a suction machine, but then it wasn't clear if they could get one, or they couldn't get it under insurance. I said that I didn't want to take Ann to the hospital just because of something

What I wish I did better

Right now, I'm haunted by one day. One day that I felt battered and at sea. Ann was still not recognizing how bad things were. She spent a bunch of the day trying to get her legs to move, just with the force of her will. Her will was always strong, and she was placing a lot of her faith in her own will. She kept claiming that she could walk, that she didn't want to be in that bed, she wanted to be in our bed together. I was so hurt by her insistance not to say goodbye to me that when she requested that I just snuggle up and hold her, I couldn't do it.

Aftermath

I'm going to start at the moment near the end. The discussion of the fight is difficult enough, and I've already written a bit about that.

What still pisses me off

Her fight didn't allow us to say goodbye.

I've heard other people's stories, and I know that we did well. I remember how she said "Brian" for the last time, clearly the only word that would give her solstice as she sunk beneath for the last time.

The first week after

Heavy mania set in. After the first few hours of crying, I started mobilizing for a celebration. A long list of people to call, and impossible list of details to create a send-off.

By the second day, tuesday, we had to deal with the funeral. Ann's mother was back to her old tricks of hurtfulness. She attempted to not allow anyone to view the casket, although I and everyone else agreed that we should have a viewing period. She forbade it, and said a variety of hurtful things. My rage was blind and white, nearly beyond control. I have not spoken to her after that day. Finally, my friend Mike found the piece of paper Ann signed that gave me the power called "disposition of remains", and Wedsnesday I quickly arranged the rest.

Ellen arrived late on monday. She walked in the door and I held her, and simply said, "You just missed her", as if Ann had slipped out to the gym, and would be right back, or could be caught on the way if you hurried. Ellen and I knew each other well - we had dated for a few years in college, before Ann and Ellen dated. Throughout the rest of the week Ellen was at my side constantly. I wonder if some of my friends felt pushed aside, but I needed that single, strong branch of Ellen. By now, she and I have been through everything and back again.

I asked Ann's uncle Dennis to lead the formal ceramony, the ceramony of Ann's leaving. Dennis had been a catholic priest, and left the ministry for what must have been a variety of reasons. The one I heard most often was that he wanted to raise a family - which he and his wife Kathy have done. Although I don't know many catholic priests, Dennis had a grand sense of the power of ceramony. What he put together was a masterpiece, with ritual that was meaningful and somber. Now, what I remember best was that we all simply raised our hands and waved, waved goodbye.

The next day, Saturday, we had a ceramony at the Black Box Theater in Oakland. Ellen was a masterful stage manager, yet the time was rushed. We wanted a place for the entire day, but ended up just with the afternoon. Ann's friends read, I played cello, our parents spoke. In retrospect, the tape is a little stilted, and I wished we had loosened up a little.

During this entire week, I felt a burning pain in my chest. Raw and biting, I could only turn it into a fire to accomplish and to send Ann off in style. In the evenings I drank heavily - about 2 bottles of wine - and didn't feel drunk.

Ellen said she would hear Ann's voice - reminding her, pointing things out - but I couldn't. Other than at certain moments - improvising cello,

The second week after

I thought the first week was bad, but I had no concept of what was going to happen next. It was like flying off the edge of the universe. Minutes were filled with the longing to be somewhere, with someone. My head was filled with just a static and a longing. And ... everyone had gone home. Ann wasn't there, no one was there.