For those of you who don’t know, I was diagnosed with Non-Hodgkins Lymphoma in September of 2002. I woke up one Sunday morning to find that the left side of my body was completely swollen. An ambulance was called and I was rushed to the ER. An X-ray had revealed that I had a tumor in my chest, that was about the size of a grapefruit. When given the news, all I could think and say was “I don’t want to die, I don’t want to die, I don’t want to die”. Those five words continuously poured out of my mouth over and over again. At just 20 years old, my life had instantly been turned upside down. This is the story of my battle with Non-Hodgkins Lymphoma and living Life After Cancer.
Due to the medication that I was given, I had lost nearly all memory of that first week in the hospital. What I do remember is that my room was always filled with family and friends, and my mom was always by my side.
By the end of that first week, my grapefruit sized tumor was now the size of a soccer ball. The weight of the tumor was resting on my heart and the tumor was also blocking my trachea. This lead the doctors to believe that I was going to either have a heart attack or suffocate. Because of the placement of the tumor, surgery was not an option. I was not expected to make it. To this day, my oncologist says that mine is the worst CT Scan he’s ever seen.
Because of the rapid growth of my tumor, treatment began before they even know what type of cancer I had. I was given 6 intense rounds of chemotherapy. The treatment was laid out over the course of 6 months, which ultimately turned into closer to 8 months when things needed to be delayed due to low blood counts. During that time, my life was spent living at Rhode Island Hospital. I was able to go home for special occasions, such as Christmas, but for never more than a few days. Christmas morning was spent with my family standing around my bed, opening gifts. They had to open mine for me. I needed a blood transfusion that day, and didn’t have the energy to move. It’s a strange feeling… Knowing that you need a blood transfusion. Your lungs burn with every breath you take. Add that on top of the constant nausea, and pain from the poison being pumped through your body. At the time, I could only explain the pain as feeling like my entire body was bruised. Life was hard… Not just for me, but for my whole family. I am not an only child. I have a younger brother and sister, who at the time, were 14 and 17 years old. They were old enough to understand that our mother had to be with me but they needed support too. Luckily, we come from a huge, very close family and aunts and uncles stepped up to the plate without being asked. To my family, my mom, and my brother and sister for understanding, I am forever grateful.
Although the prognosis wasn’t good, I refused to give up, and I refused to let depression get to me. In the beginning, I was asked many times if I needed to speak with someone about what I was going through. They kept warning me that my hair was going to fall out (which it did all in one day as I stood in front of a mirror brushing it and singing “Across the Universe – Nothing’s Gonna Change My World” by the Beatles) and that I should consider getting a wig. My response was always “I can deal with being bald for a few months, as long as I’m still alive in 5 years”. Of course, I had some bad days but the majority of the time, I kept a smile on my face. Again, the constant support of family and friends made that possible. Good friends of mine brought in a dvd player, video game system, and laptop to help make the time pass. We ordered pizzas, made slingshots out of hospital utensils and tourniquets, and shot frosted mini-wheats at people walking by my room. Immature, I know, but we had fun and I was never alone. At 20 years old, I was one of the youngest patients on the cancer floor, so I think it’s safe to say I was given special treatment from the nurses. They would often come in my room on their breaks to hang out and play games with me. There was always someone there to make me laugh.
I also made friends with other patients at the hospital. Some went into remission, and others didn’t. That was tough. The one person who pops into my mind when I think of that time is “John with the blue eyes”. He and I would sit across from each other almost daily, and receive our treatments together. We also would visit each other’s rooms when staying on the cancer floor at the same time. He was such a sweet man. Like me, he kept a smile on his face and made the best of it. He was definitely someone I looked forward to seeing every day. After a weekend at home, I went back to the hospital to receive my treatments. I sat in the chair I always sat in, a routine I was all too familiar with. The only difference was that John wasn’t sitting across from me, and I was fairly certain he had treatments scheduled that day. I asked one of the nurses where he was and her response was one that took me completely by surprise. John had passed that weekend. It had only been a few days since I had seen him last and now he was gone. I would never see those perfect blue eyes again. That was really hard for me.
In December of 2002, I received the best news ever. I was in remission. Of course, that didn’t mean that I was able to stop treatments. I still had to finish the 6 months of intense chemo, which was then followed by 3 weeks of radiation, and then another whole year of outpatient chemo. It was quite the process but in January of 2004, I received my last chemotherapy treatment. I did it! I BEAT CANCER! Now what?
Life After Cancer
For those who have never dealt with cancer, I imagine it would be easy to think that once you’re done with treatments, you’re cured. Unfortunately, that’s not the case. It takes years of being cancer-free before you are actually considered cured, and even then, it’s not over. I have been a Cancer Survivor for 11 years now and not a day goes by that I don’t think about it. In the beginning, every follow up appointment and CT Scan had cancer thoughts running through my head. If I caught a cold and had to have an X-ray done to check out my lungs, I automatically thought they were going to find another tumor in my chest. Years ago, I felt lump in my left armpit. Immediately, cancer popped into my head. I went to the hospital and had a biopsy done. It was a swollen sweat gland. When my husband and I were ready to start our family, cancer was there in the background taunting me. Because of the amount of chemo and radiation I received, I was told that there was a good chance that I wouldn’t be able to have children. Thank God that wasn’t the case for me. My husband and I had no problems at all getting pregnant and we now have two very healthy, happy little boys driving us nuts on a daily basis.
Last year made 10 years since my last chemo treatments. My oncologist is no longer concerned about the Lymphoma coming back but now it’s a whole new set of problems. Side effects to chemotherapy and radiation. Those side effects consist of skin cancer, thyroid cancer, and breast cancer. I now have to have MRIs done every 6 months to be sure that if something does pop up, we catch it early. Last year, my first MRI showed an abnormal mass in my left breast. Getting through that biopsy was extremely difficult for me. It wasn’t the actual procedure that I had a tough time with (although that was no walk in the park), it was the possible results. Yes, I had beat cancer once, but things were different this time around. I now had two little boys at home who needed me. This was not something I was prepared to handle. When the results came back, I was told the mass was just fatty tissue and nothing to worry about. Last month, I had another abnormal MRI and had to undergo yet another biopsy. This one was a little less stressful than the first because what the MRI was showing looked almost exactly like my first abnormal MRI , and both my oncologist and the radiologist felt pretty confident that this mass showed all the characteristics of being benign. Yesterday I received the news that the biopsy showed that the mass is just Fibrocystic Changes, which is completely benign and very common in up to 60% of women.
In my 32 years of life, I have been blessed over and over again. Of course, the biggest blessing was when all odds were against me, I was given a second chance at life and I plan to make the most of it. Since beating Non-Hodgkins Lymphoma, I have gotten married to my best friend, and together we have brought two perfect little people into this world. I opened a home daycare so I could be the one to raise my boys and spend as much time with them as I can. At 3 and 4 years old, they certainly have their moments but I cherish each and every one of them, good and bad. They are my miracle babies and I am so grateful to have them in my life. My newest venture is becoming the Mommy Inventor of Pick-Ease. Balancing my family, my daycare, and Pick-Ease certainly has it’s challenges but I’ve faced worse. I’m ready for whatever life throws at me and although Cancer will forever be hanging over my head, it’s not going to stop me from pushing forward and making this life the best it can be for me and my family.
If you or a loved one are facing this terrible disease, the best advice I can give you is to take things one day at a time. Remember, every passing day means you’re one day closer to being done with the needles, the chemo, the hospital stays, all of it. You’re one day closer to feeling “normal” again. Stay positive. You can do this! And if you need to, feel free to reach out to me. I’m more than happy to listen and offer the support that so many offered me in my time of need.
I’d like to take this time to thank a very important person in my life, Dr. James Butera. Dr. Butera is kind, gentle, sympathetic, and always there when you need him. After every visit, he asks “Do you have any questions, concerns, complaints?”. And he genuinely listens to your response. I couldn’t have asked for a better doctor.
Thank you also to the entire Comprehensive Cancer Center team at Rhode Island Hospital. Especially my two favorite nurses, Claudia and Alyson, who always took such great care of me. You will forever hold a special place in my heart.