Paul just got back from a trip to Mexico City where he had meetings with a successful businessman. As they chatted about their families, the man mentioned that he had four children but one had died. He shared the story of his 8-year-old boy who went into surgery for a tonsillectomy and died in the hospital because of complications. Paul had great sympathy for him, but he stopped Paul as soon as he saw the pity in his eyes.
“Please don’t feel sorry for me. This experience has become a gift. We know he is in a better place than we are. We were able to donate his organs to save the lives of eight children. We created a foundation to help others with similar problems and we have now helped over 60 children. We have a perspective of life that we would not have had otherwise. It has been a blessing.”
Paul shared our experience with my cancer and his response was, “Congratulations.” Paul was taken aback. He said, “That is a unique way of looking at things.” With great consideration and kindness the businessman said, “Congratulations that you now have a perspective that very few people will ever have. You have a new view of life.”
That exchange was like a bolt out of the blue for me and it helped tip me over the edge for a sorely needed attitude adjustment. There were two key life questions that he answered to get there.
First, what am I supposed to learn from this? Second, how can I help others because of my experience? (And not in spite of the struggle, but because of it?)
My mother-in-law is the best at the first question. When she hits something hard in her life, she always says, “I know I’m supposed to be learning something from this. What is it?” She does this sometimes through tears but the answers always come because she is asking the right questions.
Happily, I’m starting to realize that the only way we really grow is through fits and starts. We’re like that 5-year-old that is struggling to tie his shoes, crying the whole time. Or the teenager who had her heart broken by the guy she thought was the bomb. Or the widow who’s lost her husband. Or the mom or dad who’s been diagnosed with cancer.
I’ve headed down this road, but I can tell you I wasn’t all there emotionally. After that man’s glorious attitude, I think I now am.
We’ve been working on the most effective way to help accelerate a cure for multiple myeloma, and we’ve had some ideas in the last year or so. Finally, we asked each other, “If my myeloma came back today, what would we do?”
We decided that we would first meet with my excellent doctors, but then we would do some homework on clinical trials and find one that would be right for me. So I jumped on http://www.clinicaltrials.gov and found over 540 open myeloma clinical trials. I can read about three and then I’m done. Really, which one would you pick from a list like:
1. ARRY-520 + carfilzomib for multiple myeloma
2. Oral MLN9708 plus lenalidomide and dexamethasone versus placebo plus lenalidomide and dexamethasone in adult patients with relapsed and/or refractory multiple myeloma
3. Open-label study of TH-302 and dexamethasone with or without bortezomib in subjects with relapsed/refractory multiple myeloma.
Yikes. Now imaging 540 of these!
This tells me all of just about nothing. I have no context, no relevance and am more confused than when I started.
I learned that less than 5% of adult cancer patients (including multiple myeloma) join clinical trials and that in childhood cancers, over 75% of patients are in clinical trials. High participation rates mean that the docs can blow through their research at a faster pace, coming to some important conclusions. Kids have seen childhood cancers cured becuase of this fact alone.
So I created a weekly internet radio series called mPatient Myeloma Radio, the “Innovation in Myeloma” series. I interview myeloma researchers and they share their latest research and describe their open clinical trials and why patients might want to join.
You can see the site here: www.mpatient.org (and can always show support by “liking” it on FB or following on twitter @mpatientmyeloma)
Patients won’t join studies if they don’t understand the research and what better way to understand the research than to hear it straight from the study creator?
It’s a work in progress and the learning curve has been steep. I’m having my own fits and starts with lots and lots of mistakes as an amateur who majored in PR but clearly not in broadcast journalism. But I’m learning. I’ve passed the deer-in-the-headlights stage and have moved on to ask intelligent questions and it’s starting to get fun. I’ve learned how to not drop a doctor in the middle of an interview. I’ve learned that if you have two windows open during a show, you will hear a 30-second delay the entire interview. I’ve learned how to tweet and post on Facebook. I’ve learned that self-promotion is o.k. when you are trying to cure an incurable cancer @mpatientmyeloma (ha ha) and I’ve learned you all need to subscribe to my mPatient Minute newsletter so I can get more readers! The road has been really, really hard but slowly I am making the climb.
Paul always says that once you get headed in a direction and get moving, there are doors that open up on either side of the path. That has been consistently true for everything we’ve done. How lucky I am to be married to such a smart man.
What am I supposed to learn from this experience? It’s just too much to mention. What can I do to help others because of it? I hope it’s to help find a cure for multiple myeloma.
In college, Paul came to Provo and was sort of dissatisfied with his college experience. He created Backstage Cafe so Provo could have a dinner theater, Sil’s Ivy Tower Dance Club so he could meet more girls :), and The Student Review so students could have an alternative student newspaper. I see myself wanting to do the same thing for my cancer experience. I don’t know why we all have to face the same challenges when we are diagnosed with multiple myeloma. The http://www.mpatient.org site is a start and I will continue to see what I can do to help patients and drive to a cure for multiple myeloma.
With divine direction and support, this is my version of holding on.