My Story The year of 2004 came and went by so quickly. I was working full-time in human resources, was planning my wedding, and around two hours a day was spent commuting back and forth to work. I was running on adrenaline. I was tired most days, but figured it was from all the stress. My big day was October 9, 2004. It was a gorgeous day, everything turned out perfect. Soon after I noticed I was itching quite frequently, mainly on my legs. I also started having sweats. It was just about winter time, and each night I would wake up soaked. Chris thought I was losing my mind. I began to question it myself.
The beginning of 2005 I started to develop a dry cough. I've always had allergies, but it was mainly sinuses. The cough seemed to worsen and I had a heavy feeling in my chest. I went to my PCP in February and she decided to put me on Advair for asthma symptoms. I wasn't physically checked, it was just "assumed." So, I listened to doctor's orders. I made an appointment for a physical on March 10. I was hoping for some "answers." Instead I got an A-OK check-up.
Chris and I planned our honeymoon for March 26 - April 2, 2005. We went to Punta Cana, Dominican Republic. Unfortunately, we had an awful experience. We both got sick with traveler's diarrhea. When we got back to good old US of A, we went to our PCP's. We were put on an antibiotic. The diarrhea went away, but I still felt really sick. I started a job at a career school as the Director of Career Services on April 14th. I had finally landed a challenging job. I was working 11 hour days, lecturing to a room full of students two hours at a time. My cough was unbearable. The itching was driving me crazy.
I decided to go back to the PCP, but decided to see someone else there. This doctor decided to do a breathing test. I did this whole test to see if I actually had asthma. My breathing results were good, I didn't have asthma. So, I was told that it was "probably" allergies which was related to the itching and coughing. I was given a prescription for Singulair. Needless to say I didn't fill it. April 20th I had a chest xray just to make sure everything looked okay. April 21st I was sitting in my office and the nurse called stating I had pneumonia. I was so extremely sick I was out of work for a week and a half. I was put on antibiotics and cough medicine and abuterol inhalers. My symptoms only worsened. I went back to work knowing I had to because I had just started this new job.
I had a second chest xray the first week of May and it showed I still had a spot in my lung. A catscan was ordered since I wasn't getting any better. It wasn't scheduled until Mary 24th though. Sunday, May 22nd, I was by myself all day. I was feeling extremely ill. I was lying on the couch and felt my neck. I felt a lump but didn't think too much of it. I stayed on the couch for another couple of hours. Around 11pm I went up to bed and was brushing my teeth in front of the mirror when I noticed that my neck was swollen from my collarbone up to my throat on my right side. Chris was at work, so I freaked out and called my Mother. She told me to call the doctor, I didn't want to but I did. He told me to go to the ER. I asked him what he thought it might be, and he said a swollen air sac, since I had been coughing for months and strained it. By the time we got to the ER it was almost 1 in the morning. They did another chest xray and said that it was still pneumonia, but there were was more than one spot on my lung now. He told me to follow up with my doctor on Monday. I went to the doctor on Monday and he still was unsure, he said that the catscan scheduled for Tuesday would show more. I had my catscan, was back in my doctors on Wednesday, and he was telling me I needed to go see a surgeon for a possible biopsy. I went in on Thursday, May 26th to the surgeon, still thinking I had pneumonia. My surgeon told me I had Lymphoma. I had cancer. I was in complete shock. I had my Mother and Chris in the examining room with me thank God. I just couldn't believe that one minute I had pneumonia, and now I'm being told I have cancer. I was sent right over to the hospital and they took out of my neck my lymphnode, which had swollen to 8cm with cancerous cells. I was then admitted to the hospital on Friday and stayed until Tuesday. I was dehydrated, and wasn't eating. My family and I went to Dana Farber Institute in Boston on June 1st to get a second opinion. They are one of the best cancer institutes in the world. The doctor told us that treatment through Maine Medical Center is equal and it would be easier for me without the commute. I started treatment on June 10th, 2005. I had six months of chemotherapy. I was diagnosed with stage IVb Nodular Sclerosing Hodgkins Disease. My tumors were in my neck, chest, underarms, and left lung.
December 14, 2005 the scan came back, my cancer was growing. I went for a second biopsy of the node in my neck (the same spot I had the last biopsy.) They wanted to make sure that I did in fact have Hodgkins Disease. They said there could be a possibility of it being Non-Hodgkins as well. It was confirmed it was just Hodgkins. I started chemo again, but with different drugs (ICE) is the acronym. This was to consist of three days in a row of treatment, lasting 6 hours a day. I was to do this twice, consisting of six total treatments. I only made it through a day and a half. The ICE took a toll on me and landed me in the hospital. I was then switched to GND. I had a CAT scan and finally got some good news. My tumors were shrinking. I had an autologous stem cell transplant. I had an IV catheter placed in my neck which was for harvesting my cells and for the transplant. I was admitted to Maine Medical Center on February 27th. On March 7th, 2006 I received my own stem cells. I was there for a month.
Five weeks later I got word that my tumors were growing again. I had 21 rounds of radiation the neck and chest area. A scan was done in the end of June. Results came back showing that it appeared the spots in my lung were growing again. I had two lung biopsies which both came back inconclusive. I went to DFCI to meet with a transplant doctor. He confirmed that it was the Hodgkins. I started chemotherapy in Maine - GND again. The next step was to find a match for me so I could have an allogeneic stem cell transplant. October 12, 2006 a match was found. It was a mismatched unrelated donor, meaning the chances of it working were a lot less than if it was a perfect matched donor. I was admitted into Brigham and Women's Hospital on November 8th. I had chemo the 9th-12th. November 14, 2006 I got my donor's stem cells. January 5, 2007 my PET scan came back clear for the first time ever, meaning remission! March 29, 2007 a tumor is found behind my stomach. May 1, 2007 Graft vs. Host Disease sets in. (GVHD - donor's immune system recognizes aspects of my body as "foreign" and mounts an immune attack.) June 28,2007 GVHD becomes extensive and is in my eyes, mouth, and a rash is on my body. Back on the immunosuppressent drug.Keep pushing on day by day. Just keep smiling and laughing. It's brought me this far.
*PLEASE READ MY BLOGS FOR MORE DETAILS OF MY JOURNEY THROUGH BATTLING CANCER*
Where is my donor?
My donor was found through the NMDP (National Marrow Donor Program.) The NMDP follows strict confidentiality standards to protect the privacy of both the patient and donor. According to their standards, the patient and donor cannot learn each other's identities for at least the first year after transplant. Some centers do not ever allow the patient or donor to learn each other's identities. After transplant, the NMDP may help me and my donor to communicate without knowing each other's names. For example, I may be able to send cards and letters through the transplant center and donor center coordinators. They will check the letters to be sure no identifying details are shared. These rules vary from center to center. Some centers do not allow the patient or donor to have any kind of contact at all. After one year, many centers allow the patient to meet their donor if both sign release forms. In this case, the NMDP will let me know how to contact each other. Some centers do not allow the patient to have contact with the donor at any time.
In my situation, I learned that my donor is from Europe. I had to sign consent forms stating that my donor may have been exposed to Mad Cow Disease. But, I know she isn't sick because she had to go through a whole bunch of tests to make sure she is very healthy. Information shared is only supposed to be age and gender. All I know is that my donor is a 24 year old female that has traveled between Germany and Egypt in the past year.My tissue typing is very unique, like I was told before. Therefore, it is a mismatched unrelated donor -11/12 antigens match. It's a good match but not perfect, meaning that my body could reject her stem cells. The whole reason for this transplant is to give me the chemo which will suppress (wipe out) my immune system since it is weak and then replace it with my donor's immune system which is healthy. Hoping that my body accepts the donors cells and builds a new immune system in my body to fight the cancer cells and put me into remission.I would LOVE to meet my donor. It would be pretty crazy if she was on MySpace! Even if she's not, I want everyone to know how grateful I am for her. She gave me the gift of life. She is my hero!Keep Smiling, Fighting, & Laughing
