Jamie’s Choice: Risk for freedom
PART THREE: JAMIE’S CHOICE — A FREEDOM WORTH THE RISKS
Sometimes during a long and painful fight against a disease like cancer, everything wears you down. An unending stream of doctors presenting a bewildering array of life or death choices. Insurance hassles. The sheer multiplicity of issues that arise and must be dealt with to re-engineer your home, your transportation, your care. In order to make the right choices, it’s ultimately up to the patient to insist on the level of risk they are willing to take to maintain a lifestyle that will honor their spirit.
Jamie Whitmore, with the help of friends, family and especially her husband Courtney Cardenas, fought hard against some of the mainstream medical thinking that urged her to play it safe and accept the likelihood of a permanent dependence on a catheter. Instead, the Xterra legend showed the courage of a champion and steered a course that accepted some risk in order to maintain the chance that she could one day again ride a bike and swim independently.
Anything but catheter
I was supposed to do chemotherapy. I was nervous because it was an aggressive form of chemo that was going to make me so sick. Looking back, if I had done chemo it probably would have killed me.
In October 2008 the first cancer scan since my second surgery came out clean. The doctors scheduled my next scan for February 2009. They said if there was no cancer, most likely I will not require chemotherapy. In a way, all that stuff was kind of a blessing because it kept putting off chemo.
So what made me sick all that time? It was not an infection; it was a simple drug interaction. They put me on methadone to help with the pain and when combined with certain antibiotics, it causes vomiting, nausea and all the symptoms I was exhibiting. Mine was so bad, I had vertigo when I turned my head too fast in a car. It would come on all of a sudden. I would throw up pretty badly. It was horrible!
The same doctor friend who directed us to UCSF pointed out that sometimes when methadone interacts with drugs it presents all these symptoms.
“Are you kidding me?” I said. Immediately I began to wean off of the methadone. I couldn’t just stop taking it because my body would have severe withdrawals and that could make me sick. Within a week, I started to feel better. Within two weeks I was eating and I no longer had nausea. For five months, I’d had no lights no rainbows no sun. Then I finally saw the light at the end of the tunnel.
I felt better, but every so often, I would have shooting pains in the foot. But they were tolerable compared to everything else that had happened.
Starting in January, I went back to the gym and started lifting weights. I even got on the elliptical trainer — but still no swimming. I started to get stronger and stronger. I would workout my cardio for 20-30min then lift weights for about 45min. I gained back 17 pounds and I looked so much healthier.
The second scan in February was clean, so no chemo!
Now it was time to address the kidney blockage. I saw an urologist who blew up my bladder with liquid and inserted dye which would help show where the blockage starts. They found that half my ureter was blocked by scar tissue, but my bladder and kidney were functioning fine.
Several months before they tried to put a stint in to open up the blockage, but the scar tissue was like cement. It was so hard they couldn’t scrape it away either.
My urologist then proposed to detach my bladder and move it up, stretching it towards the ureter. Then they would attach the ureter to the top of the bladder. If this is successful everything will work and life will be great. A small amount of urine may flow back and forth into the kidney but it wouldn't affect me.
The downside is that with only one sacral nerve working and so much scar tissue they could permanently damage my bladder and I would never be able to pee on my own again. There is no reversing that type of damage.
I looked at my options. They can detach the bladder, and move it up to the top. At first, I thought, “Wow! Sounds pretty good.” Then for a second I thought and I realized, “Wait a minute! There are downsides. If they move my bladder I could end up having to catheter myself for the rest of my life. I would not be able to pee on my own.”
I asked the urologist: How many operations do you do a year?
“Five.”
All of a sudden I started to panic. “That is not an option for me,” I told her. “Do not touch my bladder at all.”
She said, “If you think cathetering yourself is the worst thing that can happen then you have never had anything bad happen to you.”
After she had gone out of her way during my treatment to make things nice, I was so floored. I thought to myself “How can you honestly stand there and say I have not had anything bad happened to me? I am partially paralyzed and have been forced into early retirement from my sport. They cut my butt muscle that powered my biking and running. And because I wanted to preserve the ability to
maintain my last shred of independence, you tell me I never had anything bad happen to me?”
I started to cry while restraining myself from wanting to punch her in the neck. I have never been so mad in my life.
There is always a chance the cancer can come back. And there is always a chance something could go wrong with my right kidney if I were to get rid of the left one, but I would rather lose it and have a good quality of life. Did this doctor not realize that there are hundreds of thousands of people with my precise blood type. Don’t you think one person with a match would want to donate to me if I really needed it? There will be someone to help. I have received several emails from people who said I will donate my kidney to you. Even my parents said they would donate a kidney to me.
It was unthinkable to me to have to catheter myself for the rest of my life. Immediately my thoughts raced ahead to the best possible scenario. What happens when Courtney and I agree to race in Costa Rica? Can’t exactly ride 10 hours with a catheter inserted. How was I supposed to carry it all
day with me?
Most people understand I live an active life. When the tube comes out, I will start doing things for myself that do not, cannot, fit into the limited world that doctor urged me to accept. What if I do a race and it takes me six hours to finish? I can’t swim with a catheter and hope I won’t lose the
tube. All the doctors tell me cathetering myself is not the worst thing. But I spoke to people who live with one kidney. If they had the choice to make again, they would still pick tossing out one kidney.
Basically I am in a position where I have to research and talk to other urologists who might have another idea. Perhaps they can try and move my kidney. Thinking about being part of a new medical procedure for people in my condition kind of jazzed me up.
I’m finally in a position where I am not willing to simply accept what the doctors have to say. My options with the cancer were very limited but now I have time and choices. I do not have to settle. I can travel anywhere in world to see the best doctor, and I do not have to surrender to the advice of one doctor.
