National Institutes of Health
Bethesda, Maryland
This is the place I normally visit every 2-3 months, and I've been going there since 2009. I'm in a study for HLRCC, and have had excellent care from skilled medical teams. I have participated in a trial to control my cancer tumors since 2011, and despite some side effects from the medications, my cancer has remained stable. The trial uses both Avastan and Tarceva--yes, I'm an Avatar!
When I began developing shortness of breath and extreme fatigue in December, my medical team took me off the medications to allow my body to recover. Six weeks later, however, these symptoms continue. I spent this past week at NIH being thoroughly examined.
Because HLRCC is extremely rare, any symptoms or changes are studied very closely so this research facility can learn. I sometimes feel like a guinea pig--or maybe a test dummy!
I'm on a first name basis with many technicians, nurses, doctors, and the facility travel agency. Cries of "You back again, Miss Gayle?" greet me as I enter the nuclear testing area or hematology areas. What a United Nations of wonderful people work at this awesome facility! I know the names of their children, in some cases!
After four days of many tests, my doctors are still puzzled! I had CT scans, specialized lung scans, heart scans, stress tests, endocrine tests, and blood work. Two kinds of echocardiograms, two types of treadmill tests, pulmonary function tests, and doppler scans of my veins. My determined Urology doctors brought in teams of pulmonologists, neurologists, and cardiologists to interview and examine me. No, I don't keep chickens. No, I don't take steroids. No, I don't have trouble sleeping. Seems I'm the talk of NIH!
Though they don't know the cause of my current problems, they were able to rule out a number of biggies: My lungs and heart are good. I don't have Addison's Disease, nor myasthenia gravis. Doesn't seem to be ALS or any other disease they've explored. They determined it's safe for me to fly on planes. Which is good, because I was eager to get home.
But having no explanation for my symptoms is frustrating. I am a person used to striding briskly as I shop, walk, and travel. But now walking through the huge facility, or from my car to the grocery store, or shopping with friends require me to stop and rest, huffing and puffing, after mere yards. I needed a wheelchair to get through the airports. My legs are like rubber.
My dear doctor called me as I was waiting for my plane in D.C. He assured me he will spend the weekend calling on friends and colleagues to explore more possibilities, and we will be in touch next week. The next step is to see a G.I. doctor to explore some possibilities in that area. Oh, fun.
I'm not a worrier, so I just have faith that we will get to the bottom of this. I am most eager to get back on my cancer drugs and continue that battle!
Meanwhile, I'm so thankful for my many blessings: The dedication of so many medical professionals, the love of family and friends who keep me laughing and offer support, my own comfortable bed, my wonderful loving husband, and SO much more!
Looking forward to basketball games this weekend for both granddaughters and planning a trip to Florida in March. Frank says the warm weather will be good for my health! Can't argue with that!
Love,
Gayle
