“Once I stop and think of things that happened in the past, they really do define who I am today”
“I rarely think of all the details that have transpired in the last 25 years, but once I stop and think of things that happened in the past, they really do define who I am today..”
Karen was one of the original founders of Hodgkin’s International and was also the person who originated the Facebook site, “Living Life After Hodgkin’s Lymphoma. ” Karen was instrumental in producing our conference that was scheduled for this past April in Boston (postponed due to Covid). Over the years, Karen has worked tirelessly to support and assist many, many long-term survivors, and we are very grateful for all that she has done. Here is Karen’s response to our questions:
“I rarely think of all the details that have transpired in the last 25 years, but once I stop and think of things that happened in the past, they really do 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”.
Q: When were you diagnosed with HL?
A: I received the diagnosis of cancer in late November 1995, after over nine months of being told by my PCP that nothing was wrong with me, that I was just “a stressed out mother of three”. It was my GYN doctor who actually listened to me and rans some tests. In addition to abnormal blood work, I was also diagnosed with ITP (Idiopathic thrombocytopenic purpura, a bleeding disorder in which the immune system destroys platelets). I received the call while at work on Black Friday…I was told to go straight to the hospital and an Oncologist would see me there on Monday. I hung up the phone and my mind started spinning…my kids, my husband my job! Then I said, “I can’t go to the hospital! My Class Reunion is tomorrow!” Crazy I know. I was in no shape nor of sound mind to attend, but my thoughts were, “Hell, if I’m dying, I want to be with my friends!” I was diagnosed as stage 1B and received 4400 cGy, delivered in 22 fractions over 30 days.
How old were you?
I was 33 when diagnosed, married 13 yrs to my high school sweetheart, with 3 children 11,10 & 7.
Q: What was the most difficult part of your treatment?
A: I would say the most difficult part was the delay to get started with treatment. I had to get my ITP under control for surgery, and then the staging procedures were postponed because of blizzard snow storms. I learned to stand up for myself on the day the radiologist drew all over my face, neck & chest with a black marker and said to leave it on until I returned in 2 days. 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 marker while they banged on the door telling me not to. I came out and said to myself, “I will walk through this with dignity”.
Q: Who was your biggest supporter in the early days of your treatment?
A: My husband Rich is and was my biggest supporter. There were days that our vows ” in sickness & health” were tested, but through it all he has always had my back. We have been together over 42 years and married for 38.
Q: If you can remember….what were you reading? listening to on the radio? watching on TV during your treatment?
A: I have to laugh at this “remember when” question, because even while going through treatment I still had to raise 3 children. My husband and I tried to keep our routine as normal as possible. I was exhausted. I would go for treatment after I put them on the school bus and would come home and sleep until they were just about to get off bus. Reading? Well, that would be their school work, and listening to the sound of my kids on the soccer field- that was music to my ears.
Q: What late effects have you had as a long-term survivor?
A: My late effects have included an under-active thyroid w/ nodules (being watched), many skin cancers, one melanoma, abnormal tissue growth on the aorta arch requiring two open chest surgeries, high blood pressure, fast heart rate, and a third open chest procedure to remove a broken rib. I’ve also had a failure of sternal wire closure and an abnormal growth on one tonsil which required the removal of the tonsil and surrounding tissue. I had a hysterectomy at age 47. I’ve also dealt with continued ITP problems and fibroid issues, shortness of breath, GERD, and swallowing problems resulting in having my throat stretched. I suffer from Radiation Fibrous Syndrome and a hearing loss in my right ear. I have continued breast screening for risk of breast cancer.
Q: What do you know now about yourself that you didn’t know before HL?
A: Hmmm…I I know life is too short to sweat the small stuff. I try to live with no regrets. But this has been my hardest lesson – fix what can be fixed and walk away from what can’t.
Q: When did you first meet/contact another long-term survivor?
A: My first contact to a survivor group was early 2015. I was lost, fighting insurance company on appeals, etc. Connecting with others gave me the peace of mind that I wasn’t alone and the strength to continue. The first survivor I met was Nancy Humes Masterson.
Q: Name three people who you would consider a hero/heroine in “your book”
A: 1.My father, although he lost his battle with cancer five years before I got sick. My loss of him was the drive to fight even harder to survive. I didn’t want my kids to feel the pain I felt losing him.
2. My Gyn doctor who saved me twice… once during a snow storm when I was having a late term miscarriage with complications and he happened to be the doctor on call because of the blizzard. He then became my doctor following that emergency. And when I walked into his office that Tuesday morning with no appointment and he squeezed me in. He suspected ITP and found even more.
3. My original oncologist who never left a rock upturned. Sad when he retired.
Q: Name one place you have never visited but would love to see.
A: Oh that is hard to choose! There are so many beautiful places in the world. My goal is to visit every US state and see the beauty it has to offer, but I have a fear of flying to a place that I can’t drive home from. I developed that fear when 9/11 hit and the planes were all grounded. Now Covid has reawakened that fear. With that said, Hawaii and even Puerto Rico are on my bucket list. Surprisingly, I did go to Cancun two years ago for my husband’s birthday and it was great, though when I returned home I said, “OK- I did it!”