I don’t feel my story is any different from anyone else’s except for the fact that I was diagnosed at a much younger age. It all started during my honeymoon…
I got married in 2014, and my husband and I went on a wonderful two-week honeymoon vacation in Belize. We planned the trip to fit our lifestyle: active, adventurous and daring, with some relaxation at the end. We stayed in the jungle and explored Mayan ruins, caves, and trekked throughout the country. I noticed feeling out of breath and thought to myself how out of shape I’d gotten since completing a half-marathon just two months prior, and a Tough Mudder race the fall before. I remember telling myself that I would get back to my exercise regimen as soon as I returned home from our dream vacation – and brushed it off. Our last day in the jungle during a midday jungle hike, I fell far behind my husband ,and when we caught up to each other he looked alarmed when he saw me. He said I looked white and pasty and that my lips turned blue. I was gasping for air and trying so hard to catch up. My heart was pounding and I felt uncomfortable palpitations in my chest.
I’m a Registered Nurse and I knew something was wrong. I think without having my training and experience, I still would have known something wasn’t right. I was fairly young — only 36 with no health concerns, ever. My husband (a Canadian who grew up just north of Seattle) made the remark that maybe it was just the heat of Central America getting to me. I’m a Louisiana native, born and raised on the bayou in Monroe, Louisiana. I am
I’m a Registered Nurse and I knew something was wrong. I think without having my training and experience, I still would have known something wasn’t right… I knew something sinister was going on and I immediately booked a checkup with my provider.
no stranger to extreme heat and humidity. I served in combat support zones during Operation Iraqi Freedom and spent two summers in the Middle East in confined spaces with temperatures above 120 degrees Fahrenheit. My point here being that I knew the heat was not a factor for me — perhaps it was for my Canadian born husband, but not for this Southern girl. I know what a hot summer can do to a body and I was taking precautions not to become dehydrated. I knew something sinister was going on, and I immediately booked a checkup with my provider when I got back to the states — which happened to have fallen on my 37th birthday.
When the lab results came back, my provider was puzzled. She and I poured over the CBC and iron test results and looked at each other quizzically. My H/H was low in the 9/27 range but my iron levels were through the roof. B12, all B vitamins good. She looked at me and quickly grabbed her office phone to call a hematologist nearby. I had to wait an excruciating 6 weeks to get in to see the hematologist/oncologist who uttered the scary word: cancer. He ordered a bone marrow biopsy and what seemed like a million other tests to hopefully rule out a cancer diagnosis.
It took months of bone marrow biopsy testing, months of back and forth, and a referral to the prestigious Seattle Cancer Care Alliance, in partnership with the Fred Hutch research facility and the University of Washington to be diagnosed with MDS. I’m low-risk and feel lucky to be able to manage my symptoms with blood transfusions. I’ve tried growth factors with no results, and have recently decided to not undergo any sort of treatment other than scheduled blood transfusions. I feel that I have so much life to live but I struggle to overcome feeling trapped by my medical needs and the limitations on my energy. I have always been very outdoorsy and active, and felt like I had more energy than I knew what to do with, but that has changed significantly over the last 2 years. My family life has been severely affected by my diagnosis and loss of energy. Just before I was diagnosed, my husband and I bought and started remodeling from top to bottom, our 1976 original owner home. My energy level somewhat halted my contributions to our project, and I’m sure I left my husband feeling totally responsible for our remodel. My 10-year-old daughter goes with me frequently to appointments and worries about our future. I try my best
to explain to her that I’ve won the “lottery” of cancer diagnoses, but she is not comforted by my tactics. She pressures me to tell her how I’m feeling every single day, while I wish it wasn’t a thought in her head. I went from working two jobs on the hospital floor, 60 hours a week, to working from home for an online university because of my energy level. I’m finally getting back on my feet with a regimented blood transfusion schedule, and feeling a bit of energy coming back now that I’m out of the lower hemoglobin and hematocrit levels. I also see a therapist to deal with my completely different lifestyle.
The stress has changed us all, and I worked to rid myself of resentment as quickly as I could and just get on with the business of living.
I’ve resolved to seek out the best quality of life I can have while being forgiving of myself and my new life changes. I rest when I’m tired and let the laundry pile up if it must.
I wish I could write this with a happy, thoughtful ending but I’m just not there yet. I have struggled with this diagnosis and the side effects of treatments and the meaning this has for my family. I have sought out counseling and others with MDS, but I feel so alone in my diagnosis. My healthcare team is amazing and I couldn’t ask for more complete care. I know that I must come to terms with MDS and what it means for me. I’ve resolved to seek out the best quality of life I can have while being forgiving of myself and my new life changes. I rest when I’m tired, and let the laundry pile up if it must. I ask my family for understanding, and am vocal in my community about the effects of cancer — not only on patients but for our families as well. My children are old enough to know the word “cancer’ is scary, and my husband (I’m sure) was not prepared to be pulling the weight of his relatively young wife. The stress has changed us all, and I worked to rid myself of resentment as quickly as I could and just get on with the business of living. But I can’t help but consistently hear the sound of treatments, transfusions, insurance co-pays, claim denials, clinical trials, blood counts and time ticking away. I know this will become my new normal, and I look forward to the day when I can take each day as a blessing and never take one moment for granted.