A Fork in the Road

A great thing happened, a physical therapist was sent to our home two times a week for services.  The guy’s name was Doug; he was young, tall, built and had such a nice bedside manner. He obviously spent a lot of time at the gym.  Rick enjoyed his company and they would talk while he treated him. He started slowly with Rick which was good.  Doug left exercise sheets with Rick so that he could do them on the days Doug didn’t come.  Rick was excited to start doing the exercises.  He had a goal, something attainable, and it really lifted his spirits. Doug had told Rick that if he continued to the do the exercises and build muscle, he would be able to stop using the wheelchair and transition to a walker, then a cane.

Rick’s whole attitude had changed. I'm sure it was the anti-depressants too.  He had started his way back to me.  We talked a little about what was going on.   I tried to tell him that an altered way of life was better than no life at all.  He didn't seem too convinced.  It was hard to think about the possibilities because we had no idea about any of the treatments. He had an appointment with Dr. Death coming up to discuss “the plan.”

Each time we went to the radiation oncology department we were staring at pamphlets on advanced medical directives.  http://en.wikipedia.org/wiki/Advanced_Medical_Directive. They were everywhere. I didn’t want Rick to feel that I was making plans for his demise.  I was afraid I would hurt him by bringing it up. 

We had discussed the whole death thing in our marriage.  We had a joke between us.  If he was driving and forgot his seat belt, I might say something to him.  He would look up at me and say, “What do you care, Cha-ching!” It was just our way of jabbing at each other.  In other words, I would end up with the life insurance because he was being "pig-headed" and refused to put the seat belt on just because I brought it to his attention.  MEN!

We had also talked about what we would want for the other if one was to die. We had each said that we would want the other to be happy. We should remarry if we found the right person; neither of us should feel held back. We wanted our children to be safe and loved and those were the most important things of all.

It was so hard to talk with him now.  I felt as if talking about him dying would be entertaining the possibility.  It seemed a betrayal to me.  In my head at night, I could wrestle with the possibilities but with Rick, I needed to remain his cheerleader.  “Rick, you can do this.  I know you can.  It will be over soon.”  I had to be positive or I would drown in doubt and he would go down with me.  I couldn’t let cancer win him away from me.

I had started to research chemo and its effects on the body on the computer when things weren't as hectic.  I read somewhere about the power of suggestion, particularly with people going through their second infusion with chemo.  They suggested telling the the patient that the first infusion is the worst and that subsequent infusions will not be as bad.  I started telling Rick this as soon as I heard it.  I could take advantage of the power of suggestion.

We were a wreck on the day that ambulance showed up to bring us to the Falls Church Center to the Infusion Center.  We had an appointment with Dr. Death first; next, they would take his blood and then start him on the chemo.  Rick would wear the pump of poison for three days and then return to have it taken out of his port.

Dr. Death examined Rick and asked him some questions about his current state.  Dr. Death then brought up the possibilities for treatment.  He could receive experimental treatments at either Johns Hopkins in Baltimore, MD or the National Institute of Health in Bethesda, MD if he qualified for the protocol for a bone marrow transplant.  Each had a specific experimental protocol they were using or we might opt with staying with Dr. Death with a more traditional approach.  He was hesitant to go through all the details and said he would leave it to the doctors at each hospital.  Regardless of our decision, we would be supported by them for anything that could be done locally.

We asked Dr. Death what he would choose for someone in his family.  He looked very serious as he said, “There is a lot to be said for quality of life. Neither of these protocols will be like a magic wand.  I think I would advise a family member to stay here.”

What prepares you to have this conversation with anyone?  I have no idea.  We were overwhelmed.  Rick didn’t feel at 43 that he could just choose quality of life and know he would die.  It was an atrocious situation to be in.

The truth is that only 9% of those patients treated in clinical trials actually live.  We didn’t know that at the time but those numbers are staggering. So what should my dear, sweet husband choose when there wasn’t a good choice?  We asked ourselves that question over and over; there was no acceptable answer…