The Need for Serenity…
First and foremost, I want to take this time to wish my wife, MaryBeth, a Happy 18th Wedding Anniversary (and NO! my need for serenity does not have to do with my anniversary…just read on, and stop jumping to conclusions!)
Where to begin? The funny: My oldest son (who has Asperger’s Syndrome) made a friend (also with AS) this year. MaryBeth and I were very excited and encouraged my son to spend time with his friend. One of the challenges that kids with AS face is the difficulty of getting along with peers, so when my son found a friend, we were very happy. Well, when I was diagnosed, I called the friend’s parents to let them know (just so it wouldn’t be a shock if my son came over and, out of the blue, announced that I had cancer). So this weekend, I dropped my son off for an overnight and his friends parents relayed a story: It seems that the friend’s parents had told him that this wasn’t a good time for him to come over to our house (they didn’t want to add to the stress / confusion already in existence). Apparently, while they were picking up their son from school one day they saw my son sitting off to the side. They said ’Hi’ to my son who replied, “It’s okay for [my friend's name] to come over. My Dad has cancer, but he’s not contagious!” Good thing I’m not contagious.
Okay, so now for the somewhat funny. When MaryBeth and I met with the coordinator of the clinical trial a couple of weeks ago, she told us of a person who had registered into the clinical trial but was randomized into the standard of care arm (and thus would not get the experimental TNFerade injections). Well, this person was not to pleased with the results of the randomization and dropped out of the clinical trial. Apparently, however, the individual then traveled to another site running the same clinical trial and tried to enroll there. What the person didn’t understand was that the randomization for the clinical trial is conducted at a central location, regardless of which clinical site you go to, so once your randomized, there’s no changing.
And now, the not so funny / somewhat serious: I found out today that I have been randomized into the the standard of care arm so, like the individual I just mentioned, I will NOT be getting the experimental treatment that looks so promising. CRAP! You know, at church this weekend, a good friend (Anna) told me that she always knew I was a “fringe” person (suggesting I’m “out there!”), so it’s no trouble for her believing that I will be in that 4-5% of the people with PC that make it to 5 years. Along that same line of thought, given that I have developed a disease with a prevalence rate of around .05% in people my age, it’s not surprising that I have been randomized into the less probable arm of the trial. The protocol calls to enroll 2 people into the experimental arm for every 1 person in the control arm (thus, I had only a 33% chance of getting into the control arm). Hmm, maybe I should go buy a lottery ticket — talk about low odds of ‘winning’!
All joking aside, I do believe in the importance of the research, however, so I will stay in the clinical trial; it is important to have a control group that does not receive the experimental treatment against which to compare the results of those from the experimental group. I will still be receiving standard of care, which may be effective in reducing the tumor: that still remains the goal of this neoadjuvant therapy. This turn of events also solidifies my desire to go to Hopkins for a surgical consult after treatment. I just found out, though, that Dr. Cameron goes out of town for 2 weeks (mid August until after Labor day), so I’m not sure I’d be able to get in for surgery before he leaves. I guess that’ll all be a bridge we can jump off of when we get to it, though.
So, keep the happy thoughts / prayers / well wishes coming. Support me as I try to find some serenity in dealing with this unexpected outcome of randomization. Today is my anniversary, and I’m looking forward to enjoying an evening out with MaryBeth (thanks to Chris volunteering to watch our kids). So my job today is to get over my grumpiness so that we can enjoy this evening.
Take Care,
Merle
MERLE,
GARY EDSALL LET ME KNOW OF YOUR CURRENT AFFAIRS AS FAR AS BEING SICK. MY THOUGHTS AND PRAYERS ARE WITH YOU. REMEBER TO BE A FIGHTER AND DO NOT GIVE UP WHAT EVER THE ODDS. TRY TO BE POSITIVE AT ALL TIMES NO MATTER HOW HARD. I BELIEVE THAT YOU WILL OVERCOME THIS WITH FLYING COLORS REMEMBERING HOW YOU WERE BACK IN HIGH SCHOOL. ADDITUDE IS KEY AND I REALLY BELIEVE THAT ALL WILL BE FINE.
Let me wish you and Mary Beth a happy annivesary. Sorry we didn’t remember it on our own. I know the two of you will have a fine time together.
Let me say further hat I am sorry you didn’t make it into the group in the study which is getting the new procedure. I believe, however, you will still get all the radiation and chemotherapy you can handle. We have a friend in Baltimore who is undergoing the same type of treatment as you are. He just started his radiation and has found he needs a nap every afternoon toi recoup from his sessions.
Perhaps you won’t need such, but it is probable you will. I also take a nap almost every afternoon. I find it makes a big difference for me to have it.
I just to say further, how proud I am with the way you are handling all this. It is not easy to keep everything in prospective, but I feel you are making afreal effort to do so.
Love,
Dad
I sure hope I’m doing this right – replying to your blog via “comment.”
I love your verbosity – and I feel as though I’m standing in front of you, chatting. You do what you need to do to get through this as best you can – we can choose to read or not read your blog. Basically, I’m advising you to forget listening to others’ advice and suggestions (mine, included), and do what your heart and spirit tell you to do. Well-intended folks believe we know what’s best for everyone, but only you know, for sure, what is best for you.
Serenity is a river in Egypt (or is that de-nial?). It is a river that flows constantly, and it feels really good to step into it and cool my heels. Some days, however, the river is just out of reach, but it is always there and flowing. As they say, jump in, the water’s fine!
I’m sorry for the disappointing news – but it may just mean that the next trial (the even better one) is just around the corner – and you will be available because you were not “selected” for the present one. Yes, I can be like Pollyanna at times, but that’s been my experience with so many disappointments – they were hugely so at the time, but paved the way for greater things.
I look forward to reading your days ahead.
Peace,
Lindy
Merle, I love your verbosity too! I just don’t want you to feel like you HAVE to write something when you don’t want too. You know, you could have a career as a writer. You are extraordinarily good at organizing your thoughts for the reader. And I wanted to let you know, along with everyone else, that I know how much you were hoping to be in the experimental group, and we are all disappointed for you. Still, maybe the experimental thing will turn out to be really dangerous, and thus you’ve been spared. From the movie “Angels in the Outfield”: “It could happen!” Not, of course, that I would wish that on the others, but if it did happen our disappointment would turn to relief. Selfish relief, but relief all the same. Keep writing (but only when you want to) – it helps us cope and I expect helps you as well.