As a child I used to love to ride roller-coasters. I would ride for hours just to ride different coasters. As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much. I guess riding a coaster is the best way to describe living with CML. It is for me at least.
The last few months have been just that, a roller coaster. Since I was diagnosed in February of 2014, I’ve been on three different medications. I had to change because either the medicine quit working or it caused fluid around my heart and lungs. In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs. I was admitted into the hospital where they did all sorts of tests. They eventually removed just over two liters of fluid around my right lung. There was at least that much or more in my left lung but they would not remove it due to risk of infection. It was during this time they took me off the medicine that they thought was creating the fluid.
In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug. But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer. Oh, but it gets worse. The medicine for the ulcer reduces the effectiveness of the CML drug. We were told that it didn’t but it did. During the first several months after taking the ulcer meds, my CML numbers started increasing. After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team. These were to be the darkest days of my life.
About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug. Her CML escalated and she had to have a bone marrow transplant. I followed her on Facebook through her whole ordeal. She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.
The doctor that I was sent to was not on the transplant team. The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do. He was fresh out of college. In fact, I have a son that is not much older that he is. My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot. Nothing wrong with that though. What this doctor had in knowledge, he lacked in experience. I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th. He did have a couple of suggestions that I did get out of our visits. He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine. He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.
So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be. I am working on getting disability. I have a hearing in January. I’ve had to get a handicap place-card because of gout in my right foot.
So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again. I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.
Sorry for the long post.
