In the summer of 2007 at the age of 36, I experienced a multitude of aches and pains. I was a stay at home mother to my two young daughters Madeline 6, and Lindsay 2 years old. My first symptom occurred in May, a stiff neck, very common, yet it became chronic. Next, I felt a sharp pinch in my left hip joint. I visited an orthopedist, a month later, he took an x-ray and I was diagnosed with bursitis. I was given a cortisone shot and told to begin physical therapy. In the meantime, I noticed small red dots on my legs, the size of a pinhead. I really didn’t think those tiny dots were anything to be concerned about. Fatigue started and was relentless, it never improved with sleep. It was so bad I would fall asleep sitting up, in the middle of the day, while trying to take care of my children. But any mother with young children is tired all the time.
One weekend in severe discomfort I visited urgent care for a rash that developed on my chest. It was inflamed, itchy and prominent on only one side of my body. The urgent care doctor was stumped and advised me to visit my primary physician. She also did not know what the diagnosis was; I was given a prescription, creams and ointments, all of which did nothing to relieve this spreading irritation. Soon, another rash developed around my mouth, I made an appointment with my dermatologist this time, but the appointment was not for weeks.
After several physical therapy sessions, there seemed to be no improvement, not to mention the pain was now in both hips, I was frustrated! In fact, when the exact pain began in my right hip, I thought my mind was playing tricks on me. Not to mention now I was experiencing intense pain in my ribcage and upper back. I requested additional physical therapy appointments, but my PT only found me on the table crying in agony.
As August approached I was unable to sleep due to the discomfort, and when I did sleep, I would wake up overcome with sweat, to the point I needed to change my shirt almost every night.
One day while flossing I looked in the mirror and jumped at the sight of dark red blood running down my front tooth. I thought I just needed to floss more especially since my gums were so swollen.
In late August it was finally time for my appointment with my dermatologist. I showed him the rash around my mouth and his response was, “I hardly see anything.” I left with no diagnosis yet again, and said to myself, I am never going to see another doctor!
Labor Day weekend arrived and the next day was the first day of school for my daughters. I opened my eyes and knew I was in a state of doom. Walking was near impossible, my ribs hurt when I took even a tiny gasp of air, and my arm felt like it was broken. As for the rash around my mouth it was red and hot to the touch. I packed my daughters backpacks for the next day, uncertain of what would become of me. Later that evening my family advised me to go to the emergency room.
I was assessed and quickly called in, blood was drawn and within twenty minutes I was told my platelets were dangerously low, my cells were immature and I would be admitted for the night.
Needless to say I missed seeing my daughters go off to preschool and first grade. Instead, that day I was told I had a high possibility of having acute leukemia. My treatment was explained as aggressive and I was told without it I would only live for three months. Soon my diagnosis was confirmed as acute myelogenous leukemia (also called acute myeloid leukemia), and an intense course of chemotherapy called induction would begin as soon as possible.
I was blindsided by this diagnosis, the night sweats, the petechiae (red spots) on my legs and the rash around my mouth, aka “the leukemia mask,” the bleeding, joint pain…all were symptoms of leukemia!
I went on to complete my induction followed by consolidation. I was referred to Dana-Farber for an allogeneic stem cell transplant and was terrified. Luckily both my sisters were a match to donate stem cells for my transplant and we were able to proceed quickly. After grueling conditioning treatment, which included total body irradiation three times a day for a week, followed by chemotherapy, I was ready to be infused with my sister’s stem cells. With a lot of determination to get back home to my children, I slowly recovered.
Now 2 ½ years has passed and I feel wonderful, but most of all I feel very lucky to be alive! Obviously I feel it is important to raise awareness of the symptoms of leukemia. I also want to help the newly diagnosed deal with the shock of hearing they have such a serious disease. That is why I am a Patti Robinson Kaufmann First Connection volunteer, able to mentor other young mothers. I have spoken to some courageous women, and find it very rewarding. Also, my family and I feel it is important to help raise money for research. For two years we have participated in the Light The Night Walk for LLS. I am always touched to see so many people come together for the same cause.
To read more about my story of survival and how I got there visit http://marrowmommy.blogspot.com
I would love to hear your comments and share experiences.