“I try to live with no regrets. But my hardest lesson is to fix what can be fixed, and walk away from what can’t.”
When were you diagnosed with Hodgkin lymphoma?
I received the diagnosis of cancer in November 1995, after being told by my primary care physician for nine months that nothing was wrong with me. He said I was just “a stressed-out mother of three.” It was my gynecologist who actually listened to me and ran tests. In addition to abnormal blood work, I was also diagnosed with idiopathic thrombocytopenic purpura (ITP), a bleeding disorder in which the immune system destroys platelets. My gynecologist would save me again later on, when I was having a late-term miscarriage with complications, and he happened to be the doctor on call.
Anyway, I received the call while at work on a Friday and was told to go to the hospital on Monday, when an oncologist would see me. I hung up the phone, and my mind started spinning…my kids, my husband, my job! I was diagnosed as stage 1B and received 4400 cGy (centigrays), delivered in 22 fractions over 30 days. I was 33 and married 13 years with three children.
What was the most difficult part of your treatment?
I would say the most difficult part was the delay in getting started with treatment. I had to get my ITP under control to have surgery, and then the staging procedures were postponed because of snowstorms. I learned to stand up for myself on the day the radiologist drew all over my face, neck and chest with a black marker and said to leave it on until I returned two days later.
I felt humiliated. I was embarrassed, and there was no way I was letting my kids see me like this. I turned around, walked into the bathroom, locked the door and sobbed uncontrollably as I scrubbed off all the marks while they banged on the door, telling me not to. I came out and thought: “I will walk through this with dignity.”
Who was your biggest supporter in the early days of your treatment?
My husband, Rich, my high school sweetheart, is and was my biggest supporter. There were days when our vows, “in sickness and health” were tested, but through it all he has always had my back. We have been together more than 44 years.
Although my father lost his battle with cancer five years before I became sick, I consider him to be a hero of mine. Losing him provided the drive to fight even harder to survive. I didn’t want my kids to feel the pain I felt when I lost him.
What late effects have you had as a long-term survivor?
My late effects have included an underactive thyroid with nodules, many skin cancers–one melanoma–abnormal tissue growth on the aortic arch requiring two open-chest surgeries, high blood pressure, fast heart rate, and a third open-chest procedure to remove a broken rib.
I also had failure of my sternal wire closure and an abnormal growth on one tonsil that required removal of the tonsil and surrounding tissue. I had a hysterectomy at age 47, and I’ve had continued ITP and fibroid problems, shortness of breath, GERD and swallowing problems resulting from having my throat stretched. I suffer from radiation fibrosis syndrome and hearing loss in my right ear. I have regular breast screening to check for breast cancer.
When did you first meet or contact another long-term survivor?
I first made contact with a survivor group in 2015. I felt lost, mainly from fighting my insurance plan about appeals. Connecting with others gave me the peace of mind that comes with knowing I wasn’t alone. It gave me the strength to continue. The first survivor I met was Nancy Humes Masterson.
What do you know now about yourself that you didn’t know before Hodgkin lymphoma?
Hmm…I know that life is too short to sweat the small stuff. I try to live with no regrets. But my hardest lesson is to fix what can be fixed, and walk away from what can’t.
I rarely think about all the things that have transpired during the last 25 years, but once I stop and think of what’s happened, it really does define who I am today. I often say I am one of the lucky ones and have not experienced anything compared to others. Prayers to everyone.
Karen Crossley was one of the original founders of Hodgkin’s International. In fact, she established the Facebook site, “Living Life After Hodgkin’s Lymphoma.” Karen has worked tirelessly to support and assist many long-term survivors, and we are very grateful for all that she has done.