“Courage is being scared to death but saddling up anyway.”
My mom and dad are both big John Wayne fans. My dad loved the heroism of his movies while my mom relished her brush with fame as a young lab technician in a sunny Burbank hospital. She loved to tell the story of John Wayne’s adult son coming in for a blood draw with his father. His son was terrified and wouldn’t sit still long enough for her to take the blood sample. In anticipation of the pain, he cried and writhed and was wholly uncooperative. In not so many words, the Duke told him to man-up and quit his whining. This rugged man who regularly looked pain in the face with calm swagger was bravery personified. Mom was thrilled.
There is something to be said for regularly looking pain in the face. You build up sort of a resistance, almost an expectation that a certain level of pain is part of life and that the ultimate goal is no longer to avoid it, only manage it. One of the great blessings of getting cancer is that compared to it, most everything else in life is no big deal.
Coming back from vacation, we hit a cow in Nowhere, Arizona at 75 mph. Our brand new Denali was totaled. I was life-flighted to Phoenix while the family made the trek to Kingman to get a rental car and then headed back down to Phoenix to pick me up. I arrived at the hospital and was greeted by a trauma team of 13. They were better than any ER team you’ve seen on TV. Working with precision, they cut off my clothes, started my IV and had my CT scan done within minutes. The doctor swept back into the room announcing that I hadn’t broken or fractured anything and that he’d just signed the discharge papers, which was great. Except that I couldn’t move because of the chest pain, I had no clothes, and Paul and the kids were 5 hours away. The amazing trauma team had disappeared and I lay in darkened silence in the trauma room for the next 3 hours. Eventually I found my cell phone and called the front desk to tell them that I was in one of their trauma rooms and I needed someone to come in and unhook my IV because I couldn’t get them to answer the call button. With the help from angel strangers (Mormons are amazing!), we had a new rental car, a place to stay, clothes to wear and a ride from the hospital, all at 3:30 am on New Year’s Eve. It was voted the “Strangest Medical Experience Ever,” “Worst Family Vacation” and will be forever known as the “Year of the Cow.” But no one died and in the scheme of things it is no big deal.
The bravery developed through cancer has also made me either more self-confident or completely indifferent to what others think, I’m not sure which. I don’t mean in a “I think I’ll wear a large purple mumu and curlers to the grocery store today” sort of way, or an “I’m going to speak frankly and tell you exactly what is on my mind because I’ve lost my social filter” sort of way, but in a “If I’m meant to go down, I’m going to go down swinging” sort of way. Having cancer has given me a keen sense of bravery.
I do have to say that getting off the medication help significantly in developing more bravado and being in remission really helps. (My quarterly results came back and I am still in remission!! Yeah!)
But I think adversity creates bravery and that it comes in levels, preparing us for the next great thing. I look back on the last few years and think, “That was hard and we did it. We can do the next thing too.”
The journey to get there included a huge life dip. As a patient, I went from a completely independent and functioning individual to someone who was told what to do, where to be, what medication to take, and for how long – all in the name of saving my life. The life-saving part is worth it, but it does include a significant sense of loss of personal agency for a very long time. After losing both tremendous physical and mental capacity, I have a preview of what it feels like to be 90 years old (and now better understand the “endure to the end” tenant of my faith). It is very easy to feel like an un-empowered victim.
And now, after the dip, it is time to go back to being a better me – more empowered and not in the least intimidated by really, anything. Move to a foreign country? No problem. Learn a new language? Piece of cake. (Paul still thinks I know no Spanish. Don’t tell him that the word for green beans is ejotes. I can remember that now, even though I couldn’t on the Thalidomide). Start a new business? It won’t be the first time. Start a foundation for myeloma patients? Sounds great. Completely change the scientific discovery process to find a cure for myeloma? Let’s do it.
One of the triggers for flipping from a victim back to someone who does help control her own destiny began in the gym. When we moved back from Mexico, Megan and I started using a personal trainer – a lovely girl who knew her stuff and who had also overcome hard things. As we went, I had an increasing feeling of strength, inside and out. It helped restore me to my former, but now better self. As my physical strength returned, so did my resolve that we could help drive major changes in cure discovery.
If you look at the statistics, myeloma has a median survival of 4-6 years. Twenty years ago it was 2-4 years. That’s twenty years of scientific research for an increase of 2 years of life. The drug companies hail it as a “major medical advancement,” but I want 40 more years of life, not two, so I say it is good but we can do much, much better. My particular type, MAFB has a median survival of 23 months. Younger people tend to live longer, but I fundamentally believe I am supposed to be cured, not die from it or live with it as a chronic disease.
Cancer has given Paul and me the motivation to do something about the problems preventing the discovery of a cure. Patient data is stored in facilities that can’t share it because of HIPPA (or a pervasive fear of getting sued). Talented and caring doctors are measured on papers written, so they limit collaboration with other facilities. Iterative research is the norm, while breakthrough research is seen as professionally risky. The standard research process hasn’t changed in over 50 years and is thorough but SLOW, despite new technology tools available. There are no pools of data large enough and accessed by patients, doctors and researchers that include not only medical data, but patient data like family genetics, lifestyle habits and environmental history, so that we can identify patterns of the outliers – people who are living 15 years and beyond with myeloma. Patients are asked to make life-saving decisions in a vacuum – they have to pick a doctor they trust and go for it.
And so there are problems that need to be solved. We are raising our hands. We will take the risks. We have already emotionally been at a point where we have contemplated losing it all. We don’t mind looking stupid in the effort, if need be.
Blissful ignorance (or understanding) of my own inabilities may just give me the devil-may-care attitude I need to move forward, but step by step I know that we can make a difference.
We are now working on a patient-driven project (CrowdCare) to provide support and information/data to myeloma patients, doctors and researchers. We have talented friends and business associates (thank you Spencer, Gary, Neal and our volunteers) now helping and we are assembling a team to accomplish a mighty change in healthcare, starting with myeloma.
This challenge called life will continue to throw obstacles (or cows) our way. I hope that we don’t make it harder than it needs to be, or as our hero notes, “Life is hard. It’s even harder when you’re stupid.”
We will keep saddling up for the ride.