My cancer story has been hard for me to write and share. When my first post on this website went live, which chronicled my diagnosis with Non-Hodgkins Lymphoma at 19 years old, my roommate and I spent the whole night talking, crying, and reminiscing about that day. As we talked, I noticed that we had similar memories with different perspectives. I realized that there are likely hundreds of versions of my cancer story. All my friends and family found out at different times in different ways, and handled the emotional implications with their own unique approach.
This small revelation inspired me to reach out to my brother, Danny. He is two years younger than me, and was a senior in high school during my treatment. I left college to receive chemotherapy at home, so Danny got a front row seat to the show. Living at home was important for my care, but that meant that Danny watched me endure chemotherapy while I watched him be healthy and attempt to live a normal teenage life. For many siblings, this can be a taxing dynamic. However, I would argue that in many ways it made us closer.
During my treatment, Danny took on the job of what I call “The Master Distracter.” One of Danny’s strengths is knowing how to read people, and he was great at knowing what I needed. When I needed a good laugh, the kid was full of dumb jokes. When I needed to get out of the house, he was ready to drive me anywhere. When I simply needed to cry and watch TV in silence, he was ready with the remote in his hand.
Another thing that I think is important about Danny’s perspective is that he had to continue to uphold a certain level of normalcy by attending high school, applying for college, and playing sports during my treatment. This was probably emotionally exhausting to balance, and it’s something we have not previously discussed together.
Here is my full interview with my brother about his experiences during my cancer treatment:
Rebecca: I was diagnosed while attending college in Boston, far away from our home in Chicago. Can you tell us about the day you found out that I had cancer? Who told you? How did you react?
Danny: I walked home after school and was greeting by the faint sound of crying from mom and dad’s room upstairs. I walked up slowly and opened the door. Inside, I found Mom sitting down on the floor crying in a heap of clothes next to her half-packed suitcase. I was totally confused and went over to comfort her, asking what was wrong. She pulled me into this long embrace that seemed to last an eternity before she said a word. Finally, between sobs, she squeezed out the words: “It’s your sister. The doctors think she has cancer. I’m going to Boston.”
Things really went into hyper-speed from there. I drove mom out to my dad’s office. He was so business-like about it all. I just remember him racing around to get all the bags packed and transferring them into another car to go to the airport. There really were no emotions, it was just a race to the airport at that point. I asked if I could come with them but there was no negotiation – I was to stay at home with my cousins while Mom and Dad handled things in Boston. I drove home alone in complete silence. It was like an airlock had opened and the entire world got sucked out into space. I was left trying to unscramble a million thoughts in my head on a silent drive back home.
Rebecca: I had to go through a round of chemotherapy in Boston (where I was diagnosed) before I could be transferred to Chicago. Was it hard to be far away from me, mom, and dad during that time?
Danny: That first week while you guys were away was probably the worst week of my life. Things were so hectic in Boston that I would get information in really short bursts when Mom and Dad had time. When I got the diagnosis phone call, the words “Non-Hodgkins Lymphoma” were burned into my memory. I said it on repeat 20 or so times after Dad hung up because I never wanted to forget it. I immediately went on a google-search rampage (bad idea). I scrolled through causes, treatments, and finally survival rates. That really hit me hard, and I remember going to the basement and punching the sofa and crying by myself for a long time.
The distance was the worst part. Being out of the loop while you went through emergency treatment was super stressful, and I felt guilty for not being there to help out. It was helplessness at its finest.
I leaned on family a lot at this time. My parents didn’t want me home alone, so I stayed at my aunt and uncle’s house. My cousin and I played the card game Magic for hours on end as a distraction, and I stayed home from school for the week.
Looking back on this week, it may have been exactly what I needed. I got out all of the anger and panic while you were away in Boston, so by the time you returned I was ready to get down to kicking cancer’s butt.
Rebecca: Obviously, all of our family and friends knew what I was going through. Was it something that you and your friends talked about? Was it discussed at school? Did your teachers know what was going on at home?
Danny: I actually elected not to tell any of my teachers at school. I only told two close friends about it. I really wanted to keep my home and school lives separate, because it was easier for me in a sense. What I really feared was people at school giving me extra attention because of the situation. It was hard enough going to school while thinking about you, and I definitely didn’t need people reminding me that my sister had cancer.
Having my close personal friends in the loop was super helpful. My friends found a great balance between checking in on things while also not bringing it up too often. When I was down they could tell, and found a way to distract me when the sports we played together (water polo & swimming) weren’t enough.
One of the hardest classes was my biology class because – of course – we were studying cancer. I excused myself from lecture on a couple of occasions and hid in the bathroom until I could compose myself. I totally aced that test though!
Rebecca: Do you think the emotional stress impacted your grades or any other part of your life?
Danny: This is a bit of a complicated one. Throughout the process I really felt like I had no excuses for slacking off or getting bad grades. After all, you were the one going through cancer hell, not me. I also really craved normalcy – so having teachers that treated me like a normal student was absolutely what I needed at the time.
The emotional stress manifested itself in other ways. I always felt guilty leaving home to see friends while you were bound to the couch. But sometimes I needed that emotional relief of just feeling like a normal kid. So there was definitely a lingering guilt anytime I would go out with friends or go to a long swim meet, because I knew I could have been spending that time with family. It was really tough to balance.
Rebecca: How involved were you with the medical side of my cancer treatment? Did we tell you everything that was going on or just tell you what you needed to know?
Danny: It was a bit of a mix. I always wanted to know as much as possible about what was going on, but you were always really on top of your stuff and I didn’t want to bog you down with too many treatment questions. Mom was also incredible with organizing medicine and treatments, so if I had specific questions I would usually just ask her.
Rebecca: Was it hard for you to see the physical signs such as the port in my chest or my hair loss?
Danny: Yeah that was definitely rough. I actually almost passed out when I watched them connect the IV through your port to start your chemo. To this day I’m absolutely amazed by how well you handled all of the injections and IVs and everything else that came along with treatment.
The physical changes you went through were definitely a challenge. I felt bad because I knew how well you took care of yourself when you were healthy, and I could tell how horrible it was for you to go through the physical transformation that came with treatment. The stares in public definitely sucked, and I felt pretty helpless because there was not much we could do to help you except try to keep your spirits up.
Rebecca: We are now about 3 years out, and I still deal with emotional/psychological implications of my cancer. Do you think the experience still significantly impacts you or is it something you are able to ‘put behind you’ in a sense?
Danny: Being 3 years out, I would say that I’ve been able to put the day-to-day implications behind me. However, I don’t think the experience of cancer is ever something that you can put behind you, nor would I want to. The memories and perspectives I gained from the cancer experience have definitely shaped my life decisions. Whenever you meet someone else who has gone through cancer or had a family member go through cancer, you get this crazy connection with them right away. It’s even closer with your friends and family who helped out along the way. The shared experience creates a bond that is hard to describe.
I’ve actually been able to use the cancer experience as a positive recently. A lot of problems arise in college – social issues, academics, relationships, etc. When things don’t go my way or I’m having a bad week, I can zoom out a bit and just be thankful for my health and the health of my family. Because at the end of the day, that’s really all that matters.
Rebecca: Is there any advice you would give to other kids whose siblings are facing cancer?
Danny: I would say that the best thing you can do is be present. This is something that I struggled with – especially being a senior in high school who wanted to put everything aside and be normal again. As the sibling I had the ability to “walk away” from the cancer world if I needed time off or wanted to be with friends. But for the sibling going through treatment there is really no escape. I think it’s really important to be mindful of that, because no matter what the sibling with cancer is going to be extremely jealous that you can continue living your life. Just be mindful and make sure you’re present, and that they always know you care.
Also – know your role! Being the sibling is amazing because you have the great honor of being the happy, silly person throughout treatment. There are roles that everyone plays when dealing with cancer. As a sibling it likely won’t fall on you to be the one checking in to hospitals, researching specific treatments, managing medicines and dosages, etc. So, focus on the things you can control! Bring board games, music, books, paint-by-numbers, and just be that goofy sibling to transport them away from treatment world. Relentless positivity and an overdose of laughter is the most important thing you can bring to the room.
A Note from Rebecca:
Reliving these experiences was emotional for both of us, and I really want to thank Danny for opening himself up to this. Although we are close and went through this experience together, a lot of these stories were brand new to me.
Talking about things like this can be an important part of the healing process, and it’s important to remember that cancer is emotionally taxing on everyone involved. This has been a great experience for me and I’m glad to know a little bit more about what my brother went through.