Thursday, August 4, 2011

Take a Picture

Like many people who grew up in the Mississippi Delta, I spent lots of time around the levee in my town, on the banks of the Mississippi River.  Unlike other people, though, what I did most there was run, up and down, rain or shine, cold or hot.

The Levee, where we did "Hill Workouts"
Dad was of the old-school way of thinking about running:  “No pain, no gain; no guts, no glory.”  That meant we ran, almost every day of the year, and the summer heat and humidity were not an excuse to forego that plan.  In fact, he loved to say, Almost anyone can be a runner on a perfect spring or fall day, but it takes a Real Runner to run in the extreme heat of summer and the extreme cold of winter.”  (He also told me once that Real Runners don't wear leggings or warm-up pants in races … and so I wore shorts in a marathon on a day in December when it was only 20 degrees outside.  I didn’t feel my legs for the first 18 miles of the race, but that’s a story for another time …)

With all that heat and all that running, I don’t remember complaining, though, because I loved to run.  And I loved growing up in the Delta, and, well, that meant running when it was almost literally hot as hell outside sometimes.  Every year, at the beginning of every summer when it started to get really hot, Dad said, “You can get used to almost anything if you do it everyday for two weeks.”  And for the most part, he was right. 

Another thing I remember Dad saying as we ran up and down the levee is this:  “In running, when you have a good day, take a picture of it in your head, so that you can think about it again the next time your day isn’t going so great.”

So that’s what I did.  With lots of pictures in my head, those runs in the extreme heat of summer didn’t seem so bad.  And he was right:  I did get used to them after awhile, and they did make me stronger as a runner and maybe even as a person.

Even better than pictures in my head from while I was running, though, are the pictures in my head and the photographs from the times over the years that my family was together.  Looking back through hundreds of photos, I remember the day and in some cases the exact moment when many of them were taken.  In some, we are posed, and others are informal.  I think the best ones, though, are those when the victims subjects were caught in action.

About a week after my dad was diagnosed with brain cancer, I made an appointment for a photo session for our extended family.  We had gotten a family photo taken around Thanksgiving the year before, and I was thinking that we should try to do it around that same time every year.  I told Dad when I had booked the session, thinking he would like the idea, but he didn’t really react much to it.  Having that session on the calendar gave the rest of us something to look forward to and, I’m sure somewhere WAY in the back of our minds, a sense of relative security because we were suddenly acutely aware that our time together could be limited.   Looking back, I can see that having those family photos taken in the midst of all the chaos and stress going on as we tried to cope with the intensity of Dad's illness and with the downhill of the roller-coaster ride of Grandmom's condition was all part of an effort, at least on my part, to fix time, to keep things from progressing, to capture our family's memories and love in a tangible way, in hopes that that would allow us some control over what was going on.  As is, or actually, as was, is the way I desperately wanted things to be, and I was willing to put forth my best effort to make that happen.  And what an effort it was. 

We had all planned to gather at our parents’ house the weekend after Thanksgiving.  Dad, Mom, one of my sisters, and I had gotten back from our trip to the Brain Tumor Clinic at Duke University late in the evening on Thanksgiving Day, and we were exhausted.  We were motivated, though, to have the intactness of our family captured on film.  

The Day of the Family Photos began with an early morning phone call from the nursing home where my grandmother lived, about five miles from my parents’ house.  One of my sisters answered the phone, and the nurse told her that Grandmom had taken a turn for the worse. 

As was the pattern for Dad at the time, he hadn’t been able to sleep at all that night and had just gotten to sleep about 5 a.m.  He’d had a headache and, after just having gotten his first dose of chemo two days before, we felt that he needed to be closely monitored and that he needed his sleep whenever he could get it.  One of my sisters, her husband, and my mom had been up with him in the night, too, and so my brother, my other sister, and I quickly got dressed and raced to the nursing home to be with Grandmom.

She had the Death Rattle going and was unresponsive.  Even though she was being cared for in a nursing home, she was also on Hospice, and the Hospice nurse was there with her.  “Just sit with her and talk to her,” she advised us in the hallway outside of Grandmom’s room. “She hasn’t been able to eat or drink in a couple of days, and she has a high fever that isn’t responding to medication.  We are giving her medicine to keep her comfortable.”

I had been in the shower when the phone call had come, and I still had wet hair despite the freezing cold temperature outside.  My sister hadn’t slept well and had a bad headache.  After we had been there for awhile, our brother said he would go to get some medicine to help with the headache and then would be back. 

He ended up being gone for longer than expected though, because he had a fender-bender in his rental car on the way to get the medicine.  (When it rains, it pours, right?)  My sister and I sat with Grandmom, with each of us holding one of her hands.  There were photos of family members and of her at different times in her life on the walls of her room, and we talked to her about each of them, hoping she could hear us and that she had taken a picture of those memories in her head so that she could be thinking about all of those good times again. 

The Hospice nurse eventually told us that she thought that Grandmom had a few days left and recommended that we hire an aide to sit with her during the time that we couldn’t be there.   We hastily made the arrangements and then got ready for the photo session in about 20 minutes, planning to have the pictures taken and then hurry back to the nursing home.

The rest of the family had been getting ready and helping to get Dad ready, and we met the photographer in the common area of my parents’ neighborhood.  It was very cold and windy outside, and Dad, who had lost almost all of his body fat over the past few weeks, was exceptionally miserable.  It felt like we were climbing a mountain, but, even as stressed and fatigued as were were, we were well aware that we needed to do whatever we could to recognize, appreciate, and remember the view from where we stood that day.  We all smiled for the camera, knowing that we’d be glad that we’d had a picture taken so that we could be thinking about the memories later, especially if things weren’t going so great.

Monday, August 1, 2011

The Difference

I recently came across a story about a 54 year-old man from Turkey who was diagnosed with a brain tumor around the same time my dad was.  Like my dad, this guy had surgery during which it was determined that not all of the tumor could safely be removed.  He had his life turned upside down for awhile, but at least in the case of this man, he still had his life and he got to go on working towards his goals.  In fact, this man, who already held 11 world records for breaking concrete blocks with his bare hands, earned the title of World Champion in the sport of taekwondo only seven months after his diagnosis, and now he is trying to better his own record by using his bare hands to shatter 1145 concrete blocks in under 60 seconds (his previous record was 1135 blocks).

After the competition, the man attributed his victory to "faith and perseverance," and the report describes him as being "high spirited and determined despite his age and his serious health condition."

While I’m impressed by his skill and fortitude and glad that he had a “good outcome” after his diagnosis, what I’m really thinking after reading his story is why we couldn’t have had that “outcome;” in other words, what’s the Difference?

In all the research I did about brain tumors and brain cancer after Dad’s diagnosis, the one commonality that I noted in the stories about people who achieved long-term survival was having a belief that they would survive.  But we had that!!!  The words uttered by and the description of this guy could have been my dad's!!!  So, back to Square One – what’s the Difference??

At the beginning of Dad’s treatment, we explored the idea of using vitamin and supplements as part of his treatment.  We read lots of books and journal articles and corresponded by email with a few physicians and even one man who, as a 20-year brain cancer survivor, had forgone traditional medical treatment and had instead used a model of nutritional and dietary changes.  This man has written a book about less frequently considered treatment routes for brain cancer, and he was kind enough to answer our questions and provide specific advice via email.  When we asked Dad's team of oncologists about adding supplements and looking at dietary changes or even the possibility of using a few off-label uses of medications, we were told they felt it was necessary to wait until the Dad had completed chemotherapy to consider starting any of them because of possible interactions.

I eventually persuaded them to agree to Dad’s taking 15 mg of melatonin per day by pointing out that melatonin is often used to address sleep problems and the obvious health risks from the utter lack of sleep he was getting due to the crazy-high doses of steroids they felt was necessary.  We had seen research that indicated that melatonin could also function as a powerful anti-oxidant when added to conventional therapies (chemo and radiation); one clinical trial showed significant reduction in tumor size with years added to the average survival time with this as part of the treatment regiment.  But I kept that part of what I knew to myself at that point; as long as they agreed with adding it to his Pill Box, I was satisfied for the time being.

The team of oncologists also agreed that Dad could take a multi-vitamin to address our concerns about his immunity from the steroids and the chemo.

We kept charts and logs of Dad’s daily food intake, paying careful attention to the amount of nutritional value of what he was eating.  Because of the medications he was taking, his appetite was literally feast or famine; he either said he was “zero hungry” or he requested foods that had little or no nutritional value, like Diet Cokes and, the food he asked for the most, “just a little piece of chocolate.”  Dad would normally never have eaten the junk food he did while he was sick, but either he wasn’t in a place cognitively or emotionally to consider it as he usually would have or he just figured what the hell – I’ve got brain cancer; I should at least be able to eat whatever I want for a change!

After his first dose of chemo, I printed out lots of recipes for things that I thought would be good for him to eat.  We made a plea to the oncologist around that time for a consult with a registered nutritionist, and the one that met with us provided Dad with some samples of calorie supplements and encouraged him to drink Ensure, whole milk, and milkshakes to further boost his intake because she said his daily calorie count was too low.  Dad balked at those suggestions; his pre-diagnosis personality kicked in and he said he would never drink something “fatty” like that.  When we tried to talk to him about how he needed to increase his intake of healthy foods, he usually said, “I don’t really see how I need to eat more since my exercise program now consists of leg and arm raises and walking around in the house on a walker.”  Further discussion and reminders about what the doctors and nutritionist had said resulted in his saying Riiiiight!and then tuning us out.

I did talk him into drinking smoothies, though; I named off all the fruits and vegetables blended into the concoction, and I guess he thought that seemed to be reasonable as part of his Recovery Plan.  I didn’t mention the calorie-boosting things I added to the mix, and he didn’t notice.  A few times I mixed in things like spinach to give even more Vitamin Value; each time, he chugged down those smoothies with a grimace like a big shot of liquor and then requested a beer as a chaser to reward his Good Behavior.

Despite all of the charts, recipes, fruits, vegetables, and supplements and all of the effort it took especially on Dad’s part to try to comply and to move forward with our Recovery Plan, we found out that it just didn’t make a Difference because, before he could even get a third dose of chemo in his system, he was took weak and too sick for any of it to matter.

Like probably every other person whose loved one has lost the battle to the side effects of the treatment of cancer, I wonder every day if the route we should have chosen was an alternate one.   Would that have let him sleep, and, if so, would that have helped him?  Would he have had more energy for doing things he wanted to do, even if it didn't increase his length of survival?  He certainly would have avoided the pain of needle sticks and some of the uncomfortable side effects of the chemo and steroids, even if he didn’t get better physically.  Could we have gotten him to a beach, which is where he really wanted to go? Would another treatment or even none at all have made a Difference?

There are many questions I would like to have answered that probably never will be.  I have been considering writing a letter to Dad’s doctors, not necessarily to ask those questions because, even if they were answered, it wouldn’t really matter because it wouldn’t bring him back.  I wonder, though, how it would be received if I shared some of my thoughts about what else could have been considered or done in a situation like ours.  Maybe the doctor or whoever opened and read the letter on his behalf would toss it straight into the trash.  Maybe the letter would be read but disregarded because I don’t have an M.D. behind my name.  But maybe, just maybe, it would spur an original perspective, shed a new light, bring about a changed view, and, “best case scenario,” as my dad liked to say, maybe it would make a Difference.