Wednesday, August 10, 2011


I heard a story once in which some children were playing ball when the ball accidentally got tossed over the fence into the next yard.  There was a young girl whom the other kids did not allow to play in their ball game because she had problems with her eyesight and with her balance, but she was happy enough just to have the job of going to retrieve the ball when needed.  Eager to play her part in the game when given the opportunity, she tediously climbed the fence and dropped down into the next yard.  Once there, she saw something in the shade underneath a big tree, and she called out “Here, Kitty!” to what she thought was a cat.  After getting no response, the girl picked up the ball, struggled back over the fence, and returned the ball to the other children.  The creature in the shade of the tree was actually a skunk, and, after the girl had climbed back over the fence, he sat there in silence, stunned by the friendly way she had called out to him, which was an extreme contrast to every other interaction he had ever had with a human.  He started thinking about how different his life would have been if he had been born different, if he were a cat or a dog instead of a skunk.  He even started to consider how great it would be if he were a young girl, even one with poor eyesight and coordination, but he couldn’t really go so far as to imagine that – it’s just too far-fetched of a fantasy to fathom.

Bargaining is one of the stages of Grief described in the writings of Elisabeth Kubler-Ross.  The word itself is technically defined as “negotiating the terms and conditions of a transaction;” I see it as an attempt to gain control, and I have learned over the past nine months that at times it can be a valuable tool in figuring out how to cope with changes, disappointment, and sorrow.

The bargaining that my family and I did while Dad was sick, as part of what I later learned was our anticipatory grief process, was in the form of acting like we didn’t mind or really even notice that he couldn’t do many of the things that he did before his diagnosis, including working, driving, exercising, and even basic things like getting ready for the day, talking to people on the phone, and getting himself something to eat or drink.

We also bargained by letting ourselves believe that if we got what we thought was the best treatment possible for him, managed his medications and his care, had him go to rehab, and set up my parents’ house just right, Dad would get better.  We thought that if we gave it our all, we would get something in return, and, like a child who prioritizes in the letter to Santa according to what gift he or she wants the most, what we really wanted to be given was better health, and a better quality of life, for Dad.

A little further down the road, we even bargained by saying that we’d feel so lucky if we could still have him with us and allow him to enjoy life for just a year or two more, although, since I secretly thought that that part was absolutely possible (probable?), I shot for the stars by hoping and believing that Dad had a chance, maybe even a good chance, at being in the very exclusive group of people who “overcame” brain cancer. 

Dad was always a very practical person; he felt like thinking about far-fetched things like winning the lottery was a big waste of time; "Crazy Talk," he called it, when people spent time discussing what he considered to be outrageous ideas.  But even he joined in on our Bargaining Efforts.  For several days after his initial trip to the hospital, he thought he might still be able to compete in the Ironman triathlon that was two weeks away.  He talked about how he didn’t think taking a few days off from his intensive training regiment would affect his ability to finish the race, even though at that point the sensation on the left side of his body was so impaired that he couldn’t stand up or hold a utensil to feed himself.  He was convinced that as soon as he could get out of the hospital he would be ready to go back to work, without missing a beat.  Several doctors and nurses tried to talk to him about the certainty that he would need to take at least 6 weeks off just to recover from brain surgery, even if no follow-up treatment was necessary and even if he had no symptoms or health problems after the surgery.  Each time, he listened to the person’s spiel, but as soon as he or she turned their back or left the room, he winked at us or stage-whispered “That’s what they think!” to be sure we knew he wasn’t going to follow that plan! 

A couple of days after his surgery, when he was told that he had brain cancer, he said he knew he would need to take time to recover and then he planned to restart his training program and get back to work before his sick days ran out.  He asked me to contact the race organizer for the Ironman and see if he could get a deferment, which is athlete-speak for getting permission to enter the race the following year instead of the current year.  In the meantime, he said, he planned to do some smaller triathlons and to continue his training efforts by running, biking, and/or swimming on a daily basis.  He told us that he would just work from his home office for a couple of weeks so as not to get too far behind on that either.

At one point while he was in the hospital, his neurologist said that Dad would not be allowed to drive until he had been seizure-free for at least six months, and he actually told us out of Dad’s earshot that Dad might never be allowed to get behind the wheel again.  “Whatever!” Dad said after the guy left the room.  “If everybody’s going to be doing all of this Crazy Talk about me not driving, I guess I will just get a ride to work and to wherever else I need to go.  Or maybe I will just ride my bike; that would be a good workout!”

After hearing Dad talk about his plan to ride his bike to get to wherever he needed to go once he got out of the hospital, Mom told him that we'd have to see how safe he would be on his bike.  Dad waited until he thought she couldn't hear him and stage-whispered, "I'll just get one of my son-in-laws to put my racing bike on the spinner in the garage and help me on it, and then she'll see that I can ride just fine!"

About that same time, the oncologist informed us that Dad would probably need to get radiation every day for about six weeks as part of his follow-up treatment.  Dad hated that idea because it seemed inefficient to him; he didn’t understand why they couldn’t just “go for it” and give him a higher dose of radiation to get it over with more quickly.  He had a steady stream of negotiation going about that part of his treatment; he felt like it was not “doable” for him to be going to and from the hospital daily for that long or even just to be restricted from leaving town for all that time.  “It’s like I’m grounded,” he sulked when the radiation oncologist told him he couldn’t travel during the six weeks of radiation that was being planned.  "Oh, well, I guess I can do anything for six weeks if it means I'll get better," he offered, as his part of the negotiation.

In the weeks after that, going through rehab, the trip to the Brain Tumor Clinic at Duke, and two rounds of chemo, he shifted gears again and again, eventually giving up on the idea of competing and just hoping to be able to work out for fun.  He told several doctors, nurses, and therapists that he no longer believed exercising and eating right could keep a person healthy: “Look at me;” he said.  “I’m living proof that you’ve got to run or whatever just for the fun of it because it won’t necessarily keep you from getting brain cancer or anything else.” 

While Dad was in rehab and even at the Brain Tumor Clinic, when I looked around the waiting rooms and treatment areas and saw people who weren’t as changed as Dad was, who weren’t as impaired as he was, or who hadn’t been given such a devastating diagnosis or prognosis, I was like the skunk in that story; I would have given almost anything to get just a little something more for Dad, more hope, more function, more time, more fun, more independence, more quality of life. I just wanted for Dad to feel ok and to be happy for even a little while longer.  After awhile, I didn’t even dream of the possibility of his ever being just like he had been anymore; it was too far-fetched and I felt like that would have been asking for far too much given our situation.  It would have been Crazy Talk!

No comments:

Post a Comment