by Joanie Butman
Do you remember that drug trial I mentioned a few weeks ago? Well, I went to meet the new doctor thinking they would enthusiastically welcome a new guinea pig. I was shocked to discover there is a waiting list. My first thought was, “You’ve got to be kidding. If this cancer is so RARE, how could there be a waiting list?” Of all the possibilities I’d considered, this wasn’t one of them. I was reminded once again that so much of life (and cancer) is all about waiting. When you are in the waiting room and hear your name called quickly, you think, “Amazing, I didn’t even open the People magazine I look forward to reading here.” Then they lead you into an examining room where you proceed to wait and wait and wait… That only has to happen once before you make sure to bring the People magazine with you. I always carry a book and sometimes my bible study homework, but for some reason the allure of celebrity gossip is hard to resist. It’s funny, when your escort leads you into the examining room, they proudly announce you have a private bathroom. I remember the first time they did this, I thought, “How long do they plan on keeping me here if they think I will need water and a bathroom?”
After the initial shock of learning there was a waiting list, I listened intently to my tutorial about how these new drugs work. I will spare you the long scientific explanation, but it all boils down to targeting the gene that causes the cancer to reproduce and shutting it off. Different companies are experimenting with different drugs targeting different genes. The doctor added the caveat that there is an extremely rare occurrence where the targeted gene is mutated, in which case, the drug is ineffective. In fact, it’s so rare they don’t even test for it.
There are currently two trials being conducted at Sloane and one at Dana Farber in Boston. I had consulted Dana Farber in February and was put on a wait list because that trial hadn’t been approved in the U.S. at that time, but I gave them authorization to request specimens of the tumor to evaluate whether or not I would be eligible if and when they received approval from the FDA.
My Sloane doctor reported that the Dana Farber trial had been approved and suggested I contact them to see where I stood on their waiting list. When I did, the doctor I consulted informed me that based on the results of the tests I authorized in February, I was not eligible because my tumor has the rare mutated gene the doctor at Sloane just finished describing. I blurted out, “Are you serious? I’m an outlier amongst outliers? Why didn’t you let me know?” He responded with sensitivity and honesty, “I didn’t want to disappoint you. I thought I’d just wait for you to call me.” I can’t seem to get through to these doctors that the only thing that drives me crazy is not what they tell me but what they DON’T! How can I make an informed decision when I don’t have all the information? The obvious answer is I can’t. He went on to explain that he didn’t want me to lose hope. I suppose for some people that might be true; but he, and many others in the medical community, fail to appreciate that they don’t have the ability to take away my hope. It comes from an authority much higher than them. They might be the authority on cancer, but the source of my hope is the authority on life, which trumps anything they can tell me.
This logic reminded me of a conversation I had with another doctor years ago on behalf of a friend. Her doctor refused to tell her that she was terminal and continued prescribing exorbitantly-priced drugs that were making her sicker than the disease and worse, giving her false hope when, in fact, she only had days left. By not being honest with her, the doctor was robbing her of precious moments to say things she would never have the opportunity to say again. After a heated conversation, I pleaded with him to be honest with her. He posed this question, “Who are you to take away her hope?” I’m not sure who was right in that situation. Personally, I believe false hope is worthless. I knew she was going to die shortly either way. I was convinced it was her right to decide how she wanted to do it, so I chose to tell her myself. Looking back, I don’t know who was more arrogant, the doctor or me. Now, years later and with much more personal experience in this arena, I believe more than ever that the patient needs to know all the facts regardless of how difficult they may be to deliver. The final decisions regarding our healthcare and our life are ours alone. Without all the information, it is difficult if not impossible to determine the best course of action. My advice: choose to be your own advocate! If you can't, find someone who will assume that role for you!
You may think that learning my cancer was nonconforming might have been a blow, but in reality it is a perfect example of answered prayer. I prayed for wisdom and guidance as to what trial to go into. I was very specific asking, “Please make it obvious so my path is clear.” He answered swiftly and decisively. My ineligibility for those other two trials couldn’t make my choice any clearer and saved me from entering a trial that would have been doomed from the start. As far as the waiting list goes, everyone’s waiting for something aren’t they? Why should I be any different? Fortunately, I have the luxury of being able to wait – something many others do not, so I choose to be grateful. I’ve also prayed for patience over the years. Trust me, if you ask God to help you learn patience, He is going to put you in situations where you are going to have to practice it – again and again and again. I just wish I were a quicker study so we could move on to something else.
Lastly, on more than one occasion I’ve been asked, “How do you do it?”
“Keep from worrying.” I could write an entire book in answer to that question. Come to think of it, I already did! If you want the long version, I'd be happy to send you a copy of I Don't Buy Green Bananas, but the lyrics to Because He Lives say it more eloquently and succinctly than I ever could.
"Because He Lives"
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know he holds the future
My life is worth the living just because he lives