No one can ever really be prepared for a cancer diagnosis. No matter what type, what stage, it throws your whole world for a loop and it's a horrible, scary thing to have to face. I know I was definitely not ready to hear the words "I'm sorry, but it's cancer" on August 17, 2010, just a few weeks before I turned 26. While I'd been experiencing symptoms for about 6 months, you always think it's gonna be something easier to deal with, not cancer, not this, not to you. But when cancer becomes your reality, you have two choices-give up and let it win or fight with everything you've got. I choose to fight.
My opponent ended up being a diagnosis of Stage 4B Primary Mediastinal Diffuse Large B Cell Non-Hodgkin's Lymphoma. How do you fight something you can barely pronounce?! Thankfully, I had a great doctor, Dr. Memon at Kishwaukee Cancer Care Center, right from the get-go who was there to help me navigate the tricky waters of this diagnosis with both his kindness and knowledge. In the early days after my diagnosis, I devoured everything I could find about lymphomas. I needed to know my enemy inside and out if I was going to beat it so I made sure to research like my life depended on it, because really, it did.
Along with learning everything I could about my disease, I reached out to others through various organizations and I owe so much to Planet Cancer, the American Cancer Society, NHL Cyber Family, and all the other places I turned to connect with others going through similar situations and help me retain my sanity. I also started treatment right away, having my first chemotherapy only 3 days after I was diagnosed. My oncologist decided on 6 rounds of R-CHOP as my regimen, the standard for Diffuse Large B Cell Lymphoma.
All in all, though I had some symptoms I tolerated chemo remarkably well and was able to keep going to school through everything. After 3 treatments I had a PET scan that came back completely clear-I was ecstatic! I felt completely empowered and in control as I finished the next 3 chemos and awaited my next scan, certain that it would reveal remission...However, that next scan did not give us the good news we had hoped for and desperately needed. Instead, some areas of concern appeared in my left lung, which could be cancer, infection, or something else. My doctor ordered a CT guided needle biopsy of my lung, but it came back inconclusive. After consulting with some other physicians, my doctor decided to order 2 more rounds of chemo and then re-scan.
That was probably the worst part of this whole journey, my low point, when I realized this wasn't going to be as easy as I thought. For the first time I felt hopeless and scared that I might not win the fight. However, eventually through the support of my wonderful family and friends and a long talk with my doctor, I was able to dig myself out of my depression and find the strength to continue the fight. Still, it was hard to accept when I finished my 8th round of chemo, did my scan, and the spots on my lung were still there...
At that point we had the option of watch and wait and see if something more developed or if it went away, but not knowing and not doing anything was not something I could accept so I went to Rush University Medical Center and had a pretty invasive procedure-VATS (video-assisted thoracic surgery) done to remove the lung lesions to biopsy them. That was not very fun as it involved them removing a small piece of lung and draining the pleural fluid and chemically "glueing" basically my lung to my ribs. I had 2 chest tubes and was in the hospital 4 days, but I was happy to do it since I'd finally get some answers. Plus the surgeon was really hot :)
So the good news was that surgery and recovery went well, but the bad news was that it unfortunately revealed that I still had cancer. The next step was determined to be a salvage chemo regimen called RICE to get me into remission and then proceed to an autologous stem cell transplant. An auto transplant is basically just a way to give you a massive dose of chemo that would normally kill you, except after they give you the chemo they infuse you with your own stem cells which they harvest before the transplant, in effect "rescuing" you and then the stem cells grow you a new immune system. It requires a long hospital stay and takes 6 months to a year to fully recover. I knew this was going to be hard and test the limits of my strength and perseverance, but I was actually relieved just to have a set plan of attack and I felt ready to take it on.
I ended up having my transplant on July 6, 2011. It was both easier and harder than I imagined. Overall, it was the worst thing I can ever imagine putting myself or anyone through, but thankfully the really awful part didn't last long and I recovered much quicker than I imagined I would. Getting through it was rough, but it proved to me how strong I can be when put to the test.
Afterwards I had a couple adverse reactions to antibiotics but overall was feeling very good and healing well and getting my strength back. I, as well as my doctors, were confident that I was cured. However, my +100 day post-transplant scans told a different story. Not only was my cancer back, but it had spread to my liver, somewhere it had never gone before. Since getting the news of my relapse I have been investigating all my options, getting second and third opinions on how I can maximize my odds of finally conquering the beast once and for all, even recently flying out to Maryland to investigate my clinical trial options with some of the nation's most renowned lymphoma specialists at the National Cancer Institute (NCI).
My hope now is to get accepted into a clinical trial at NCI that involves a tough chemo regimen that has shown great promise in Primary Mediastinal cases like mine, then proceeding to a mini allogenic transplant of one of my sibling's stem cells and also getting an infusion of their genetically altered T-cells +14 days post-transplant. An allo transplant is different than an auto in that instead of just being a means to give a massive dose of chemo, I'll be getting a whole new immune system from one of my siblings. This carries some risks that the auto did not, but also offers the possibility of a cure and has shown lots of promise in refractory lymphoma cases like mine.
So this has not been a smooth journey, but I am excited and hopeful for the future. This constant battle with cancer has been a challenge but it has also been a blessing in so many ways. I don't know that I would understand just how simply amazing the people in my life are if cancer hadn't opened my eyes and shown me how much love and support I've gotten through all this from my friends and family. They have been phenomenal and I know I would have given up long ago had it not been for all the people I've got in my corner. I am constantly amazed by the kindness of both friends and strangers. I've also got a deeper appreciation for the beauty of life, something you sometimes take for granted until you realize how easily it can be lost. I've also gained a sense of purpose from all this, I've become very involved in advocating for young adult cancer patients and the Bone Marrow registry. I've gotten some amazing opportunities, from being contacted by the administrators of www.planetcancer.org & authors of the Planet Cancer book and asked to write a blog for their website, I've been the key note speaker on survivorship at a luncheon at my cancer center, been interviewed on the radio, told my story in a front page article for the DeKalb Daily Chronicle, been used as the model/spokesperson for the bone marrow registry drive at Kishwaukee Community Hospital, just so many cool things that offered me a chance to raise awareness. My ultimate goal is to finally kick this thing for good and go back to school to become an oncology nurse so I can really help others in their own fight with cancer in a very personal way. I love my life and I love sharing my story with others. I am determined to not let cancer win and I truly appreciate all of you who've helped me in this battle. Thank you, thank you, thank you!
