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.

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