Three words you never want to hear in your lifetime are: "You have cancer". I was diagnosed with Acute Promyelocitic Leukemia on March 9, 2009. It was a Monday morning and while getting ready for work I noticed that I had blood in my urine and soon after I had a bloody nose for no reason.
I didn't know what was wrong with me at the time but I knew something wasn't right. My husband and I decided it was best to go to the emergency room to get checked out. On the way I called my parents to let them know about what was going on and where we were headed. At the time my mother and sister were in Florida for my sister's sprong vacation. I assured them that everything would be fine and to stay put until we gount out exactly what was going on with me.
We arrived at the ER where my father met my husband and me; I had routine blood tests run to try and identify what was causing me to bleed so easily. After what seemed like hours they informed me that my blood platelet count, which is your bloods ability to clot, and white blood cell count, whihc is your bloods ability to fight infection, were extremely low and that I would need further testing. When these counts are so low there is a high risk for severe bleeding. For example, if I had accidently slipped or recieved a paper cut, my body wouldn't be able to stop bleeding.
The emergency room made an appointment for me at a specialized blood, hematology, clinic. This clinic would be able to perform more comprehensive tests, at a higher level, to pinpoint why my counts were so low. At this time since we didnt' really know what was wrong wiht me my huband headed back to work while my father and I went to the next appointment. At the hematology clinic I had my blood drawn again, and we waited for the results. The doctor came into his office where we were waiting and said what no one wants to ever hear - we think you have leukemia. My father and I were sitting there with our mouths dropped by the shock of what we had just heard and grabbed each other's hands immediately.
I couldn't believe it and I didn't want to believe it. I thought everything was going to be fine because you just don't think it could happen to you. I think being told I had cancer just made things go blank for a moment. I was terrified that it could be true, shocked that this was actullay happening, and confused because I no idea that I was so sick I was feeling fine. I didn't want to accept that I potentially had cancer and the Doctor did say that further testing needed to be done so I just convinced myself that this was a bad dream and it was all going ot be over soon. But this was happening and I needed to do something about it. I looked at my father's worried face and told him everything was going to be ok, I was saying this not only to reassure him but also in hearing myself say it out load i believed it too.
The doctor called my mother and told her the news ans she and my sister were on the first flight home. I called my husband and told him that I had leukemia and his first reaction was pure disbelief. I told him what we knew and that I was on the way to Dana Farber in Boston where we were going to have final tests done for confirmation of my diagnosis. I remember leaving the hematology clinic my dad and I climbed ino his suburban; I leaned my head up against the front seat window trying to process what had just been said to me. I was going to try and look up information on what I was up against because I had always known that leukemia was cancer - and that it wasn't good - but that was it. After picking up my phone I realized I didn't want to know anything, because i just didn't want it to be true - and I wanted to hold on to that last bit of hope for as long as I could.
We arrived at Dana Farber and I had my blood drawn for the third time that day along with my first bone marrow biopsy. This allowed the doctors to see at a molecular level what was going on with my blood and why my counts were so low. After teh test the doctors confirmed what my previous blood tests had shown - that I did in fact have leukemia. We were still waiting on more results to identify what type of leukemia I had, but what they did know was I needed to begin treatment right away.
On Monday March 9th, 2009 the same day I was diagnosed I spent my first night at Brigham and Women's hospital. I realized just how scary leukemia is, there was no rhyme or reason why I got this disease one day there was a change in my DNA where two of my chromosomes switched adn it basically short circuited the healthy production of my blood clls, primarily affecting my blood platelet count and white blood cell count.
The first phase of treatment was Induction Therapy. This treatment phase is designed to be used as a first step toward shiringing the cancer in evaluating response to drugs and other agents. For acute promyelocytic leukemia (APL) patients, Induction therapy typically consists of ATRA with chemotherapy. Induction therapy, is followed by additional therapy to eliminate whatever cancer remains. Induction therapy, began the day I was admitted. The first thing I said to my gamily ater being in the hospital room was don't leave me here alone, and they didn't my family was there everry day for me taking turns spedning the night and taking the best care of me along with the nurses and doctors. I began treatment the next day, which caused me to be very susceptible to any ilness since my immune system was so weak due to the chemotherapy. My family transformed my hospital room for me they took pictures of my backyard blew them up to poster size and put them in the windows so I felt like I was home.
I recieved countless cards from friends and family and they all hung in my room as reminders o all the people that were rooting for me. My husband would bring in pictures and videos of our dogs which I think I missed more than anything and it made me - so happy to see them.
While undergoing treatment the infusions completely wiped out my simmune system causing me to have a wide array of side effects. One of which was losing all of my hair, which call me crazy, at first I was excited I think because it was something newe adn different and the idea of going shopping for a whole new hair style sounded fun. Brigham and Women's had a wig shop at the hospital where you could go and try on wigs and they would style them for you so we good to go. This was the first outing I got to go on while in the hospital and it was to go shopping eand try on new hairstyles with my mom and sister there helping me to pick out the best one.
Time went on in the hopsital and my body began to recover from the initial rounds of chemotherapy as you can imagine I was beginining to go a little stir crazy. By day twenty-one I was determined; the doctors had been saying in the prior days that it would by any day now that I would be ready to be released.
On March 30th, 2009 I knew my doctors would be making their rounds and I would have the possibility of going home, so I decided that I had to make sure I looked my best hoping to somehow impress them and show them that it was time for me to go home. I had put on my new wig - my makeup and best hospital clothes which at the time consisted of my pajamas! I remember pleading to my mother before they came into the room telling her I couldn't spend one more day here. My doctor walked into the room and the first words out of his mouth were; "you don't belong here" and as you can imagine those words were music to my ears- I was getting out, after a few hours I wsa fully discharged packed up and heading home -- so HAPPPY.
But this was still only the begining and over the next seven months I would still need to continually drive to Dana Farber in Boston for treatment and check-ups. By mid April about a month and hald after I was diagnosed, I was in remission, which was an amazing feeling. Now the next step in treatment was to seek out and kill the residual leukemia cells not killed by the treatment I recieved while in the hospital.
Treatment Phase 2 - Consolidation Therapy
The purpose of this phase is to seek out and kill the residual lekemia cells not killed by induction therapy. Often these cells are not detectable but they are assumed to be present. This phase of treatment ofgten involves high-dose chemotherapy.
The consolidation phase of treatment was separated into four cycles. Cycles one adn two consisted of infusion treatments of Arsenic Trioxide. I would go to Dana Farber for five days a week Five, five weeks at a time of two hours each session to allow my body to gain back some of its strength before startign the next round. This treatment again brought on its own set of side effects that I continued to push through with the help of my doctors and family.
Once cycles one and two were over I felt as if I was in the home stretch and had only two cycles left to go at Dana Farber. This consisted of infusion treatments of Daunorubicin, a much stronger chemotherapy medication, for three days a week, one week at time with an infusion time of 15-20 minutes. This treatment again caused its own set of side affects and caused me to lose the little hair I had begun to grow back. In between these two sessions I had a one month break. After the final week of treatment I was estatic to be finished with consilidation therapy. I no longer would have to go to Dana Farber every day, even though by the end it became my everday, even though by the end it became my everyday life and it was what I needed to do to get better.
After I was finished with the infusion chemotherapy I was finally on my last stage of treatment which was the part of treatment where I no longer needed to go to Dana Farber on a regular basis.
Treatment Phase 3 - Maintenence Therapy
This therapy is often given to help keep cancer in remission. The purpose of maintenance therapy is to kill any remaining leukemia cells that may not be activve but could begin to re0grow and cause a relapse. The doses of chemotherapy are not as high in this phase as in the first two phases, it appears that APL patients benefit from maintenence ATRA with or without continuous low-dose chemotherapy. This combination appears to be associated with the lowest relapse rate.
This phase of treatment consisted of a regiment of three different types of 'chemotherapy' pills along with various supplemental pills to replace the electrolytes and minerals that i was loseing as a result of treatment. In total this meant I was taking about 400 pills each month and I continued to do so for the next year.
The side effects of this phase of treatment were much less then the infusion treatments and I was able to begin going back to work and really start getting back my life before leukemia. On October 26th, 2010 I took my last does of medication and I couldn't of been happier.
In the End
Being diagnosed with leukemia was almost like a page out of a book being read to me from a story that had already been written and I was just along for the ride.
Throughout my ordeal I learned so much about myself and those around me. I met amazing doctors and nurses that took remarkable care of me. I am so grateful for my amazing husband, parents, and sister who were by my side every step of the way. Having them there gave me strength during one of the hardest experiences that I have ever gone through and allowed me to never be afraid. I always knew that I would be ok because of them.
Don't get me wrong, I had days when I felt sicker then I ever have before. I was miserable and yet my family was always there supporting me. When a person is diagnosed with a life threatening illness it is not olny the person that is diagnosed but the entire family. We became a team with one goal of getting me healthy again. I know that even after all the treatment and side effects they caused that I wouldn't have chaned anything. My life has been changed in so many positive ways that I think the overall experience and what I have taken from it is worth the pain that I went through. It has given me the opportunity and inspiration to help others going through what I went through and continue to help raise funds to find a cure for so many people out there that still need one.
I feel so lucky being a part of the Light the Night walks - it has given me a sense of purpose out of all the uncertainty that comes with a cancer diagnosis. It is a way that people have the ability to come together and makea difference in so many lives, my own included. In 2009 my family and I formed Tilton Ski Team we participated in our first walk and have been participating since.
I am a key example of how research and knowledge can save a life.
Fifty years ago Acute Promyelocytic Leukemia was considered to have a 100 percent mortality rate and no form of treatment. Since then Acute Promyelocytic leukemia has come a long way to now have an established treatment plan with a 90 percent cure rate.
This disease has come full circle in such a short time whish is astounding to me and motivates me even more in my participation with the Leukemia & Lymphoma Society. There are so many people out there looking for what was given to me - a cure. I hope through continued participation and support of the Leukemia & Lymphoma Society this one day becomes a reality.