Published on May 13, 2014
Rhonda, a patient living with a myeloproliferative neoplasm (MPN), polycythemia vera, was determined to get a diagnosis and seek out the best care possible. She shares her personal health battles and journey through myeloproliferative disease treatment and living well today.
Sponsored by Incyte Corporation.
Transcript | Rhonda Williams: The Power of Being Your Own Advocate
My name is Rhonda Williams. I’m 44 years old and I'm from Nacogdoches, Texas. My husband is a county road administrator…my son is 24 years old. I have on child. Just recently I’ve elected to stay home and concentrate on my health and relax a little bit more.
I love to be outdoors as far as gardening. Really right now in my life my main passion is…Just t try to relax and enjoy each moment. Now that I’m not employed, we travel some, but really just relaxing with my family and friends is really my focus right now.
I had so many symptoms for a long time…I really struggle with pain and muscle ailments and a lot of physical therapy along the way. I always felt like there was something other than just the fibromyalgia. It impacted my life greatly. It was a struggle for me to make deadlines and get to work. I always felt like I didn’t know the whole story. There was more to it.
I have polycythemia vera. As I said earlier, I felt like there was more to it. I was at the time, 36 years old, and I weighed probably 95 pounds. And I didn’t exercise, I ate what I wanted. I was just this little bitty person. My hair was thinning, and I was losing weight. I went to my gynecologist actually for a checkup, and I told him all my friends they’re going the other direction where I seem to be losing weight and losing hair. He said let’s just do a complete blood health screen on you. He called me that Saturday actually and said I don’t want to say the word “cancer,” but it’s really out of my realm. I want to refer you to an oncologist. We’re dealing with something else, but I’m not sure what it is.
My local oncologist, when I started out there, I went in presented, of course, with my health history and said the fibromyalgia and all the codes things I had going on, and he the first time that my husband and I were there, said this is probably showing up in blood lines reactive to fibromyalgia. And immediately I didn’t feel good about the comment, of course. But he said we’re going to do a test, and there’s a 1 percent chance, and I still have that piece of paper, and he wrote 1 percent bone marrow blood disorder, but I really don’t think that’s it.
We went on and I started investigating online and reading, and I was already telling my husband, either hemacromatosis or polycythemia, I had two or three that I thought it might be. And sure enough, after 6 months, and he did a DNA test through the blood. And I was JAK positive, and I was diagnosed after 6 months. I was at work, and I had done some research online, and, of course, looked at MD Anderson right away.
I had wrote down Dr. Verstovsek’s number, and I decided to call. And I really couldn’t believe it, he picked up the phone. So that was really, you know, I couldn’t believe it. He talked to me, and he said everything you’re telling me sounds like it’s a correct diagnosis. But can you please get your test results, your medical records together, fax them over to me? Let me see, and I will call you back. He called me back, and he said yes, everything looks correct, but we need to confirm with a bone marrow biopsy. And he had an appointment for me within two weeks. So it was really fast.
It’s overwhelming when you come from a small town to a large facility, and you’re dealing with all the home town doctors. When I’m not here, it’s really amazing how efficient MD Anderson is and the warmth of all of the medical personnel and everybody here, you know, just very accommodating and very efficient. Once I saw Dr. Verstovsek, just great relief. He knows what I have. The validation in that, it was just a very happy day.
Today I’m doing great. All my blood levels are really in line. Now as far as pain and my muscular problems from my fibromyalgia, I’ve got some other autoimmune things going on. As far as my MPN, all my numbers are under control and my bone marrow biopsies, my JAK mutation is actually not even showing right now. So pretty much in a remissive state with that mutation, so I'm doing really well.
I’m very hopeful. I feel better and better each day really, and a lot of that has been also just trying to take care of myself and trying to look inside my mind and my emotional health.