As a lymphoma survivor, I want to take a moment to share my personal journey, as well as tell you all how Blood Cancer United was with me every step of the way.
It all started in March 2018. We had been living in the UK with our two young daughters, and life was good! I had been feeling tired and had this hollow sound behind my ear. I saw doctors in both the UK and the U.S. who assured me it was most likely just my body trying to get over a sinus infection.
I remember going on a hike and having one of the worst headaches of my life. I knew then, in my heart, that this wasn’t going to turn out well. Back in London, the MRI showed a kiwi-sized tumor in my head. I knew at that moment that my life and the life of my family would never be the same. The biopsy confirmed I had an aggressive, high-grade diffuse large B-cell non-Hodgkin lymphoma (DLBCL).
One silver lining in all of this is the fact that I am an epidemiologist and that gave me a special ability to really do my research. I knew my subtype was very aggressive and did not respond well to the standard of care therapy. I remember one of the first websites I visited was the Blood Cancer United, and the information I found was incredibly helpful. I participated in Blood Cancer United webinars and listened to all the podcasts that were offered.
The next few weeks were a whirlwind ― we repatriated back to the U.S. immediately (which is a challenging experience under normal circumstances!), and I was also able to meet with my oncologist at MD Anderson. He was enrolling newly diagnosed patients with my type of lymphoma in a phase II trial, and luckily, I was an eligible participant. The treatment was very taxing on my body, not just physically but mentally as well. I was hospitalized for a week for each treatment, had numerous blood draws, chemo pumping into me for five days straight, chemo into my spine, and one bout of neutropenic fever. All the while, I was missing out on things, my daughter’s birthday, spending New Year’s with my family, and just the general day-to-day of life. I could no longer take them to school or make their meals. We were so lucky to have our family care for us every day. I am forever grateful for the love, support, and positive energy they created around me. I also needed to connect with others who were dealing with the same diagnosis, so I created an online profile with Blood Cancer United and quickly started chatting and posting on the community board. Even after treatment, I still check in with my "lymphoma friends" regularly!
I have gained much of my strength back and can honestly say that I feel healthier today than I have in years. I feel so lucky to be here! I had checkups every three to four months for the first two years post-treatment, and I am now on a yearly basis. My scans are coming up this month, and let me tell you, the anxiety never goes away!
To give back, I have volunteered my research experience in helping with grant proposals for Blood Cancer United and I have also accepted being an Honored Hero for Light The Night in Montgomery County, Texas. Our team raised $10,000 for Blood Cancer United in 2020, and I am so proud of everyone who supported the effort! If it weren’t for the most generous donations of time and money by individuals before us, I know I wouldn’t be standing here today. The Blood Cancer United has made such an impact on blood cancer patients and their families, and now more than ever, we need to do all we can to keep up that fight.
Cancer is tough, but we are tougher. Thank you for letting me share my story!
Tina
Diffuse large b-cell non-Hodgkin lymphoma (DLBCL)
