My Story

• • • • • • • • • My Diagnosis

Three words you never want to hear in your lifetime are: "You have cancer." On March 9th, 2009, at 25 years old, I was told I had leukemia. My Monday morning started off the usual way, but while getting ready for work I noticed blood in my urine and soon after I noticed I had a bloody nose for no reason. I didn‘t know what was wrong, but I knew something wasn‘t right. My husband Matt and I decided it was best to go to the local emergency room. On the way we called my parents to let them know about the situation. At the time my mother and sister were in Florida vacationing for Katie‘s spring vacation. I assured them that everything would be fine and to just stay put until we found out exactly what was going on with me. My dad, meanwhile, was on his way to the ER to meet us.

Once we arrived at the local ER, the nurses ran routine blood tests to identify what was causing me to bleed so easily. After what seemed like hours the ER doctor informed me that my blood platelet count, clotting ability, and white blood cell count, 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 received a paper cut, my body wouldn‘t have the ability to stop the bleeding. The ER 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 point since we didn‘t really know what was wrong Matt headed off to work and I went with my Dad to his house to wait until it was time for my appointment. Once at the hematology clinic they drew my blood again. The doctor came into his office with the results and said to me those words no one wants to hear "we are quite certain that you have leukemia." My father and I - mouths dropped in shock - grabbed each other‘s hands immediately. How could this be happening to me? I was in disbelief. The doctor said there was still one more test that needed to be done, a bone marrow biopsy that would confirm the diagnosis. I honestly thought it couldn‘t be true. Prior to this day I wasn‘t really feeling sick. I was young, healthy, and active. I did have several bruises across my body, which for me wasn‘t totally out of the ordinary since I am a bit of a klutz. And thinking back I noticed I was more tired than normal, but I didn‘t think much of it.

After the initial shock of the diagnosis I think my mind went into auto pilot and I decided– I need to fix this. I looked at my father‘s face, lined with worry, and told him, ―everything is going to be ok, - not only to reassure him, but for myself. The next step was to go to Dana Farber in Boston, MA to have the bone marrow biopsy done. I had my blood drawn for the third time that day and then I had 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. By this point we had made the call to my mother and sister that I had leukemia and they were on the first flight home. Matt had left work immediately and came straight into Boston to be with us. After what seemed like, again, hours of waiting, the doctors came in and confirmed what my previous blood tests had shown- that I did in fact have leukemia. The doctors were unsure of exactly what type of leukemia that I had at this time, but what they did know is I needed to begin treatment right away.

• • • • • • • • My Treatment Phases

Phase I Induction Therapy

“This treatment is designed to be used as a first step toward shrinking 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 diagnosed. I was admitted to Brigham and Women‘s Hospital, under the care of Dana Farber, that night and underwent intensive chemotherapy for a week. This completely wiped out my immune system and caused me to have a wide array of side effects, one of which was losing all my hair. On March 30, 2009, 21 days after my diagnosis, my body had recovered enough to the point where my blood counts were high enough that it was safe for me to leave the hospital and finally go home! After being home for a week I went back to Dana Farber to have my second bone marrow biopsy. At this point the Induction Therapy had done its job and I was in remission. But, this was just the beginning and there was still a long way to go.

Phase 2 Consolidation Therapy

"The purpose of this phase is to seek out and kill the residual leukemia cells not killed by induction therapy. Often these cells are not detectable, but they are assumed to be present. This phase of treatment often involves high-dose chemotherapy.”

The consolidation phase of treatment was separated into four cycles. Cycles one and two consisted of infusion treatments of Arsenic Trioxide. I would go to Dana Farber for five days a week, five weeks at a time with an infusion time of two hours each session. In between these two cycles I had a two week break to allow my body to gain back some of its strength before starting 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 a time with an infusion time of 15 – 20 minutes. In between these two sessions I had a one month break. After the final week of treatment I was ecstatic to be finished with consolidation therapy. I no longer would have to go to Dana Farber every day, even though by the end it became my everyday life and it was what I needed to do to get better.

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 active but could begin to regrow 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 maintenance ATRA with or without continuous low-dose chemotherapy. This combination appears to be associated with the lowest relapse rate.”

The final phase, maintenance therapy; was the part of treatment where I no longer needed to go to Dana Farber for infusion treatments. It consisted of taking three different types of 'chemotherapy‘ pills along with various supplemental pills to replace electrolytes and minerals that I was losing as a result of treatment. In total this meant I was taking about 400 pills each month and would continue 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 to my life before leukemia.

• • • • • • • • • In the End

Everything we experience in life, good or bad, has an impact on who we are as a person. Being diagnosed with leukemia may have been a bad experience but; I believe this experience has made a positive impact in my life. Throughout my ordeal with leukemia I learned so much about myself and those around me. I met amazing doctors and nurses that took remarkable care of me and who I literally owe my life to today. I am so grateful for my amazing parents, sister, and husband for being by my side every step of the way. Having them there gave me strength during one of the hardest experiences I have ever gone through and allowed me to never be afraid. I always knew that I would be okay because of them. Don‘t get me wrong, I had days when I felt sicker than I ever have before. I was miserable, and yet my family still sat there supporting me. I couldn‘t give up, for me, or for them, no matter how hard it was. When a person is diagnosed with a life threatening illness it is not only the person that is diagnosed but the entire family. We became a team with one goal of getting me healthy again, and we succeeded. I know that even after all the treatments and array of side effects they caused that I wouldn‘t have changed anything. Being diagnosed with leukemia changed my life in 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. Leukemia is a disease that affects thousands of people across the world. It is not something to be afraid of; with knowledge there is power. Knowing I was going to be ok allowed me to be strong for myself and my family. This experience made me a stronger person giving me the confidence and realization that I can do anything I put my mind to.

To learn more about Tilton Ski Team and Kristen's story click on the other team members links below!

Kristen Tilton can tell you all about Her Story

Matt Jablonski can tell you about the 2011 LTN walk and How You Can Help Now!

Katie Tilton will tell you about the 'What's in the Tilton Ski Team Name'!

Mike Tilton can tell you abour our 2011 Fundraising Plan

Denise Tilton can tell you more about Acute Promyelocytic Leukemia

Light the Night Walk 2011

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.

In fact, in 2009 alone, LLS researchers were conducting more than 90 clinical trials, a critical step in the development of new treatments and cures that will help patients live better, longer lives.

• A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.

• A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family member.

• A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.

• A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team.

Please make a donation to support my participation in the Light The Night Walk and help save lives. Be sure to check my Web site frequently to see my progress, and thanks for your support!