April 25, 2014. A date I will never forget. It was the last official day of classes for my master’s program. The day a group of friends got together to celebrate the upcoming graduations of a number of our members. The day my mom called to tell me my dad had been taken to the emergency room, transported to the larger regional hospital, and admitted for what they thought was a cardiac incident of some sort.
You see, my dad has a cardio history to rival the best of them. We all just assumed they would take him to the cath lab, do what they do, and send him home. Except he never made it to the cath lab. When they ran the CBC in the lab, his counts were all wrong. The next day, I got the phone call I had been dreading since my dad had been admitted to the hospital. My dad called to tell me he had cancer. Angioimmunoblastic T-Cell Lymphoma (AITL) to be specific. AITL is a rare, very aggressive form of Non-Hodgkin’ Lymphoma (NHL) that accounts for only about one to two percent of all NHL cases. You kind find more information about AITL here.
That phone call changed the course of my life. I narrowed my job search, and withdrew any applications I had out that were more than driving distance from where my parents live. (Note: driving distance for me is a twelve hour drive or less.) I also changed my plans immediately following graduation. Initially, I was going to stay in Oklahoma while I conducting my job search and get a few extra week in with my graduate assistantship because my lease wasn’t up until the end of July. Instead, I packed as much as I could into my car and drove to South Dakota two days after graduation to be with my parents. My parents actually wound up missing my graduation because they were en route to Mayo Clinic in Rochester, MN so my dad could be treated by the best of the best. I offered to skip graduation and meet them in Minnesota, but my dad wouldn’t let me. Thankfully, OU and the College of Education both live-streamed commencement exercises over the internet so my parents were able to watch both my institutional and departmental graduations even though they couldn’t be there in person.
After graduation, I spent two months with my parents just helping around the house, buying groceries, and doing anything I could to make things a little easier for them. I had the opportunity to join my parents for some of my dad’s appointments at Mayo, and I was incredibly impressed with everything I saw. When they say that Mayo is the best of the best, they aren’t just blowing smoke.
When I was offered the job in Pierre, I jumped at it. Not only was it an incredible opportunity professionally, but Pierre is only a two and a half to three hour drive. For awhile, everything was going well. Dad was responding to treatment better than his doctors had hoped. In November, he underwent a stem cell transplant, and at Christmas we all celebrated what we thought was the end of my dad’s battle with cancer. AITL when treated with CHOP chemo and a stem cell transplant has an 85% “cure” rate. Unfortunately, my dad is a member of the unlucky 15% where the stem cell transplant fails and the disease relapsed in January.
Being the fighter that he is, my dad underwent a very risky splenectomy and began a new round of chemo treatments. Almost two weeks ago, he gave us all a huge scare. The type of chemo he has been receiving apparently caused a clot, and that clot traveled to his lung nearly killing him. Dad spent 5 days in the ICU on a ventilator. I was able to drop everything and drive out to the Hills to be with my parents at the drop of a hat and spend a long weekend with my family. However, the guilt I felt when I had to return to work while my dad was still in the hospital was horrible.
When my grandparents were sick, my mom essentially moved across the country to take care of them. She had the luxury of being retired at the time though. I have been working full time for less than a year, and I have no idea what it’s like to go to work and spend a day without thinking about my dad and his illness. I’m close enough to where I can easily go home for the weekend, but should I have looked more seriously for jobs in the Black Hills so I could live at home and help out around the house? Honestly, Pierre was the closest to home that I wanted to be. I hate to admit it, but I need that separation, even if just a couple of hundred miles, to be able to function. I spend every day terrified that that particular day will be the day I get a call saying my dad is gone. That thought is never far from my mind.
How do I cope? I bury myself in work. I run. I try to limit my visits home. I do everything my power to think of anything but what my dad is going through. The downside, my coping mechanisms are exactly the opposite of my mother’s. I get that her world is consumed with my dad and his illness because she’s there. She’s living it and she doesn’t have work to escape to. The part I don’t get is that when I visit, and she has the opportunity to not think about it for two seconds, it’s all she wants to talk about. Mom wants to talk about every last detail on repeat and hold my hand or hug while doing so. When I’m upset, those are the absolute last things I want. As much as it makes me want to snap though, I take it. I sit, listen, and let her hold my hand because she needs to. If that’s what helps my mom cope, it’s the least I can do for her. Even if it kills me a little every time.
The guilt I feel for needed to carry on a normal life when I’m not at my parents’ is sometimes overwhelming, but when it is all said and done I need to have something to come back to in the event that my dad doesn’t make it. I am not at a point in my life where I can just put my life on hold for weeks or months at a time, and that’s hard.
Because of my family’s experiences with cancer – I have lost three grandparents to various forms of the disease – Relay for Life has been a big part of my life since my junior year of college. With my dad now fighting the good fight, this year’s Relay season has even more meaning than before. I named my team Lymphomaniacs in honor of my dad. He called himself a Lymphomaniac during his first rounds of chemo (even if the term implies that he loves lymphoma) because that’s just his type of humor (it sounds like nymphomaniac, in case you missed that). I will be walking in honor of my dad at my local Relay for Life on June 27. I Relay in the hope that one day no child will have to go through losing their parent to cancer. I Relay for my fellow adult children of cancer patients who struggle through guilt and fear to maintain a “normal” life while their parent fights the battle of a lifetime. If you’d like to support me, my dad, and the American Cancer Society in the fight against cancer, please consider making a donation to my Relay for Life team here. Thank you in advance.
To anybody out there fighting the good fight: Fight on!
No One Fights Alone