You may have wondered why do we call cancer “the big bug” or why our go to phrase is “fighting the big bug”… well when I found out I had cancer five days before Christmas 2016 and spent the night in the hospital when I was supposed to be at the airport picking up my son who was flying home from his first semester of college, I was challenged with how do I explain this to my children. How do I make sure they are not fearful? But also how do I present it so I am not lying…
I have always been very open with my kids because I do believe with knowledge you can find understanding and strength and that the unknown is much closer to fear. As an educator and Mom, it was also very important to me to find a way to explain to my 3 year old what was going on because I knew her day to day life would be effected greatly. We needed a means of explanation that was not only developmentally appropriate but also one that she could connect to and that we could increase the depth of her understanding over time. It took me a couple weeks of over thinking and stressing until I realized that “the big bug” was the perfect way to explain it.
See, my daughter had unfortunately had pneumonia around Thanksgiving and she felt really yucky. My Mom, told her she had a bug and we had ended up talking about how a bug was not really like an ant, spider, or centipede in your belly but just an illness or even more simply another way to say you are sick.
That Christmas break I was really sick. My stomach was horrible, my liver not functioning well, and I was in a lot of pain. Wallace, Mom, and I were also beat emotionally and scared to death. All we knew was that I had cancer and it was in my liver- we were waiting until I could go to Moffitt Cancer Center on Jaanuary 3. As you can imagine, our life was far from normal. Those who know me, know I am an Energizer Bunny of sorts and this totally changed my abilities. I struggled to eat and I could not keep up with the family on a simple walk.
So, one day, I sat on the edge of the bath tub where I was at eye level with my daughter and explained that I had a big bug that was making me feel sick and yucky. She immediately asked if it was like her bug and I explained it was bigger and the doctors had to figure out how to get rid of it. I told her I would be going to a big hospital in a couple of days so they could figure it out. (I have always tried to talk with my children a few days ahead of events so that we would have the opportunity to keep talking leading up to the event and I can answer any questions they have and also to prepare them if I will be gone or if the schedule will change.)
So, as you can imagine my daughter asked me many questions in the next day or two- what will the doctor do? How big is the hospital? Will they make you feel better? As you can imagine, I could not answer these questions. I had never been to Moffitt before. So, I just answered honestly saying I don’t know, but I will tell you when I get home.
I have had lots and lots of appointments, tons of scans, three biopsies, port installation, endiscopy, radiation and lots of chemo. Through all this I have explained to my daughter now 6 about it every step of the way. My daughter knows my port is so I can get chemo aka special medicine that is like bug spray to knock the big bug down, she knows that chemo is the medicine I need to knock the big big down, she knows I get CT, PET, and MRI’s to see if the big bug is bigger or smaller, she knows the radiation was to shrink the big bug in my hip so I wouldn’t be in pain and lots lots more.
We talk through it all at her level. It is important to me that she has a positive perspective. We do not talk the mortality or the end game. We will someday but I am hopeful it will not be soon.
She asked one time, why is it called a “cat” scan? It hadn’t dawned on me that she thought it had to do with the meowing cat. She now knows that cancer is the big bug but we still call it the big bug. I never fully understood her comprehension of the whole thing until around Thanksgiving this past year, she was driving with my big kid and I and out of the clear blue from the back seat she asked something to the effect of, “Mom- what happened at Moffitt the other day, is the big bug smaller?” (I had a PET scan) and miraculously I was able to say “it’s smaller” and through the rear view mirror the joy in her face and her huge smile just said it all. I had successfully communicated to my daughter that this was not a short term illness, to expect ups and downs, and to take every small victory with smile. I think I have showed her perseverance, grit, and commitment. I am so proud of her!
As we approach yet another chemo week, we have already started talking. She knows I have chemo next week. She knows it will be for three days. Her biggest concern is if daddy will be able to take me.