i just wanted to share a story from one of my newest teammates, taui. she is a leukemia survivor celebrating 10 months in remission by signing up with us to run in the nike women’s half marathon! she’s also a wonderful example of where your donations are going, because her treatment was developed thanks to monies raised the the leukemia society. you can follow her blog at http://bamboodays.wordpress.com. here is her story in her own words… go taui! =)
My name is Tauiilelagi Fernando, or simply Taui, and I am currently living with Chronic Myelogenous Leukemia (CML).
I was officially diagnosed with CML on August 5th, 2008. One year prior to being diagnosed, I was just your average working girl in her twenties with a lot on her plate. My mother was diagnosed with Lou Gehrig’s Disease (ALS) in 1997, and upon graduating from college, I moved home to help my family care for her. So there I was, juggling a full time job, caring for my mother, father, and younger siblings, and taking care of the family finances. In addition to all of that, I had a very active lifestyle that not only kept me in good shape but also helped with regulating my stress levels. Sometime in 2007, I suspect shortly before my wedding to my wonderful husband that July, I noticed that I was starting to feel very worn down, tired, and would have trouble catching my breath. I went from working out in the gym for two hours on end to managing only fifteen minutes because of the shortness of breath I was experiencing. Friends started telling me that I was looking tired and pale, something that was out of the ordinary I guess if they brought it to my attention. I also started to experience pretty bad headaches and sharp head pains that felt like someone had been sticking needles into my brain. I would experience vertigo while sitting. I went in to our local ER a few times to see if they could see if there was something wrong, but the MRI they ran for my headaches came back negative for any malignancies. I was told to take Tylenol and get plenty of rest and to exercise (which, ironically, I was having difficulty doing because of my SOB), but not once did they draw my blood. I also started to bruise easily and lost weight without even trying, and lost about 50 pounds at the time of my wedding. At the time, I welcomed the weight loss as a GREAT thing because I looked awesome in my wedding dress, but little did I know that the weight loss and bruises would prove to be preludes to news that I never thought I’d hear in my life.
In May 2008, I traveled to Honolulu for a three-month work assignment for my job with the American Samoa Government Department of Commerce. That July would mark my husband and I’s one year wedding anniversary, so he flew up to Honolulu to celebrate. A couple days before our anniversary, we scheduled a visit to a local outpatient clinic, The Medical Corner, to have our first annual check up. It was difficult to schedule regular check ups in American Samoa because of our hectic schedules and our inability to get solid appointments with doctors on the island, so we figured it would be great timing to go while we here in Oahu. We met with the physician assistant, Mike, who ordered baseline diagnostics and did a regular check up routine on us both, which included CBCs (complete blood count). We got our blood drawn at a satellite lab, and scheduled our follow up visits in the next week. This was Friday morning. After we left Mike’s office, we went to watch our nephew Justin practice at a football clinic being held at the University of Hawaii at Manoa. At around 5 pm that same day, I got a call on my cell from Mike, who told me that he just got MY blood results back and that he needed to discuss them further with me. He told me to be back in his office first thing the next week. Now, I had the whole weekend to worry and wonder why the heck he wanted to see ME, I was healthy! I mean, I was tired, but I’d never had any prior health problems to worry about. That reasoning turned out to be denial on my part.
Tuesday morning, we arrived at Mike’s office. For some reason, I told my husband to wait in the waiting room. I had some sort of premonition of the worst case scenario by this whole thing, but my husband the optimist, encouraged me to not waste energy on worrying about the unknown. So I followed Mike into the room, sat down, and heard my worst fears confirmed before me. My blood work came back with my white blood cell count 8 times the normal level. I asked if it could be because of an infection we couldn’t see, but he answered that the normal range for white blood cells are between 3-10, with 10 being when you’re at your sickest. He then proceeded to tell me something that I thought I’d never have to hear: the only reason your white blood cell count would be THAT high is if you have cancer. I was shocked by the news, to say the least. As I went over all the things I had been feeling over the past year, it was like my intuitive voice, my body’s voice, was just confirmed. Something had been wrong, but never in a thousand years did I think that it would be THIS wrong. After I cried my eyes out and got a sympathetic hug from Mike, he told me to hope for the best and prepare for the worst. He then told me that the next step was to run a series of genetic tests to verify what kind of cancer I had, and sent me to get an ultrasound of my abdomen. I think he had an idea of what I had, but didn’t want to say anything just yet. He also began calling around to various oncology offices to set up a consultation for me.
After calling several offices and being turned away because of my lack of insurance, he found my current oncologist, Dr. William Loui of OnCare HI, Inc., one of my many angels here on earth. When I first met Dr. Loui, he said something to me that I will never forget. He shared with me that he took me on as a patient not only because of my unique case (apparently CML patients are rarely diagnosed in between childhood and old age), but also because he didn’t want to be the one to tell me “no” – to deny me my chance at living a happy and full life. He was also aware of my lack of insurance coverage, but did everything in his power to keep my visits affordable by giving me a 33% discount on his services and prescribing me generic drugs that would do the job, for now. He started me on a daily regimen of oral chemotheraphy medication (hydroxyurea) to stem my white blood cell (WBC) count from climbing higher and higher.
Sometime in October, after my state provided medical insurance (MedQuest) kicked in, I was prescribed Gleevec to treat my condition. Unfortunately, I started to develop an allergic reaction to Gleevec that would strangely manifest itself whenever I ate Korean food (I love Korean food!). So after a few bouts with that, Dr. Loui decided to take me off Gleevec, and put me on another CML treatment option called Sprycel. The published side effects of this drug were quite frightening when I first read the medication information, but fortunately, the only side effect I really seem to experience is a permanent appearance of “goose bumps” on my arms and legs. But in the end, the overall result of this treatment is prolonging my life – which is worth those silly goose bumps after all.
As of today, it’s been 10 months of remission for me. And I am just living life and looking forward to my future with, and without, leukemia 🙂
Current Cancer Survivor
Celebrating 10 Months CML Free!