Sunday, April 3, 2011

Belief vs. Hope

One of the biggest challenges we face aside from managing the disease directly is maintaining emotional equilibrium. We all (by we I mean all of in the nuclear family) support each other in various ways. It's pretty clear Meagan relies on your truly, her cabana boy, for strong emotional support, along with incredible support from her posse of friends and family. As her pillow partner though, I often get questions that others don't  - especially in those times when she is feeling scared and vulnerable. Recently, one of the most difficult questions she asked was, "do you really believe I am going to make it?".

Over the past ten months my answer has been a pretty consistent and forceful, "yes". Sometimes I've had to fake it, for her sake. I did it because at the time I felt like that was what she really needed to hear. That creates a lot of internal disconnect - because there many times when I feel scared, uncertain and not at all confident about the outcome. I am always hopeful, and am always committed to us persevering and doing whatever it takes. A while back she was quite insistent that we use the words, "you will prevail", instead of "we will persevere".

Some of her friends offer her that unconditional - "of course you will make it" - support. I am very grateful for their quick and assured response. I understand it's important for her to hear, and may even be helpful, as one's outlook can make a difference.

But after living with this process day in, day out for ten months, and watching the disease progress, notwithstanding the treatments, including the most promising drug for melanoma developed in decades, and knowing the difficulty of this particular cancer, I admitted to her a seed of doubt and couldn't categorically state, "I believe". I was pretty shook up by the recent scans, and seeing all those tumors - even though I know most of them are side shows and non life threatening. But it was hard evidence of disease progression. It's not that I believe the end is near, far from it, I do believe that with additional treatment (even though at the clinical trial stage) and through excellent tumor management (surgeries, radiation treatments) that she can live a very long life. It will be like living with a chronic disease. Especially given how her melanoma seems to present itself.

She  ended up being ok with this conclusion, even though it was off from what she wanted to hear. It was not without its challenges though, it was a very difficult discussion (that means a lot of her tears in our family). Meagan is amazing, she understands my emotional state and wants me to be true to my feelings, but at the same time is conflicted because she relies on me to be her rock. So if the rock is a little wobbly, it affects her. I reiterated my high degree of hope - I have a lot of hope for what we will end up doing at the National Cancer Institute. But hope is not the same as absolute certainty.

I tried to explain it to her using a golf metaphor, which for a non-sporting person, proved somewhat helpful. I said that she was like the world's greatest golfer, playing a desert golf course, and she was on a tee perched very high on a hill. The par 3 green was across a small ravine, with nothing but rock and cactus in between. It was also quite a ways downhill, so it looked like you had to hit a postage stamp from high up and afar. And it was blowing 30 miles an hour. Standing there on the tee, there is no question that as the player about to strike the ball, you have to BELIEVE. You have to assess all the inputs (distance, wind, elevation change, your physical and emotional capabilities and preparedness) and psychologically be so convinced you will make it on the green with a well calculated and well struck ball that it does nothing to impinge on your stroke, that it will be perfect. Belief does make a difference.

As the cabana boy (her caddy in this metaphor) or as a person in the gallery watching - the perspective is somewhat different. Of course you want success. You cheer them on and offer encouragement. You hope like heck they make it. You know they have made shots like this before, so you have confidence. But as you look at the scene, you know there is a pretty high degree of difficulty. So you might not BELIEVE the ball will get on the green with every fiber of your being. You might have a seed of doubt, especially if you've seen how many other pro golfers have stepped up to the tee and not made it on the green. So externally you provide all possible shows of support, while inside you might have that niggling seed of doubt.

Well, a golf shot is not a life, and maybe it wasn't the greatest way to describe how I felt or why I couldn't say unconditionally or uncategorically, "I believe". That's a pretty high standard, especially with this disease. I do believe I am at a pretty high standard in terms of hope, optimism, commitment to do whatever it takes, and wherever we need to go. I do believe we have time and will buy time, hopefully for something which will lead to partial remission or remission (but not cure) until a cure is developed. And that we will still grow old together, even if she has more scars than me.

But part of this untenable situation is finding yourself in these scenarios without precedent, without an effective road map for how to move forward, without knowing which words will be the right words and balancing your own emotional needs with those of your loved one. It doesn't always work out and the words don't always come out the right way and it's unfair and a tragedy that we are put in this situation. That's a part of living with cancer for which there is no great answer, except to keep the love and support for each other strong and the communication open.


  1. You write so well about things so difficult to express. Words don't come easily at these times but it is important to write and to share. We are hoping in every way for the best for Meagan and all of you.

  2. When Pete and I were talking shortly after my diagnosis and I was still feeling very uncertain about what the future would hold I said something like "I am going to get sick from the treatments and it's going to be a drag and keep us from doing all the things we like to do." Pete said "Yes being in treatment will probably keep us from doing some of the things we like to do." It was a totally honest answer and basically a restatement of what I had said but I remember being totally bummed that he said it. Emotional equilibrium is certainly a complex issue.

  3. Our road has just begun on this journey. I don't even know where to look, what to say, how to think, how to react along with all the unknowns. However, my wife is the rock and the one that was diagnosed. We go to the oncologist for the first time today. I hope we leave feeling better than going in but that remains to be seen. I enjoyed reading your post and it helped.

    Thank you.

  4. Thanks all for the comments. I appreciate it. Good luck Larry, it's a tough road and your role is crucial.