Families Dealing With Terminal Brain Cancer: My Story
One of the most heartbreaking aspects of being stricken with terminal brain cancer is telling your family, especially your children. It’s been over three years since that terrible day when I was diagnosed with Anaplastic Astrocytoma (Grade 3). My husband, Rich, learned about it in a phone call from me, just as he was about to board a plane to China for an important business trip. When he returned, he took the lead in telling our three children, Richie, Angela and Domenic, who were 13, 10 and 7 at the time.
Revealing difficult news like this to children is a delicate matter. But families dealing with terminal brain cancer need a plan of action, for discovery after the initial diagnosis as well as for how to cope with it throughout the terrible journey lying ahead.
In our case, we decided the healthy spouse would be the messenger. The conversations were tailor-made to each child’s understanding and were given one-on-one, to allow each child their privacy as they made sense of what my diagnosis meant, and how it would soon turn our lives upside down.
In my upcoming book, Defy & Conquer, I share this often-ignored aspect of living with cancer. Because of our early and open conversations about my condition, I was able to get first-hand accounts from my husband and three kids, in their own words, in short essays we included in the book. Seeing first-hand how kids feel about learning their Mom has cancer and being able to read about their fears and emotions may allow other adults in my situation the same comfort in knowing it’s best to be honest and open, and go about living every day you have left without carrying this burden all alone.
I’d like to share with you some excerpts from my book and follow up with an update as to how we’re all dealing with my condition today, over three years later. The following excerpts are from “Telling the Children,” a chapter from Defy & Conquer, in their own words. They may seem a bit optimistic. That’s because at the time they were written, in Fall 2014, we thought we were winning this fight.
From my husband:
When I heard the diagnosis, I was shocked and fell to the ground in tears. When the doctor spoke to me, he said, “We are going to beat this. Don’t worry about it.” But inside, I was terrified about what I had heard.
The first thing that I was going to change was my schedule. I started working from home instead of at my office, about 15 minutes away. I went and talked to my employees about Mindy’s diagnosis. I asked them to step it up as much as they could to help me out. I told them, “If you can’t work some longer hours, then let’s lock up the doors and we’ll walk away,” because I was willing to walk away to take care of Mindy. They did step up and helped me out, and we kept things going.
When I had to break the news to the kids, I spoke to each child at their level, according to their age. I told our oldest, Richie, everything. I told Angela, our middle child, what I thought she could handle but with less detail than our oldest. Domenic, at only seven years old, was told very little. We did not speak as a group. I talked to the kids individually.
I often felt overwhelmed and sad. I sometimes lost my faith. In trying to cope with all this, I drank more alcohol than was healthy. I just wanted to squash my emotions. In the morning, I would go to the gym with Mindy to find some balance in a normal routine and keep her spirits and our physical strength up as much as possible. I prayed a lot…
…Looking back at what we’ve been through over the past two years, I realize there’s nothing I would do differently if we had to go through this again. I think we handled it well. The biggest piece of advice I have for others is: Be your own advocate. Ask questions. Do research and trust your instincts. Seek counseling if needed. There’s no shame in that. —Rich Elwell
From my oldest son:
In my life there have been many difficult obstacles that I have had to overcome but the greatest of all obstacles was my mother’s diagnosis. Two years ago I was told my mother was sick. I was told my mother has brain cancer. At the time I didn’t even know what to think. I had no idea what cancer was like. All I knew was that it was a very serious sickness.
Before I knew what was even going on, both my mom and dad were going from doctor to doctor, professional to professional, to seek help while I tried to continue living a normal life as a high school student.
I learned about the diagnosis on a weekend and, on the following Monday, when I returned to school, I didn’t know what to tell my friends or my teachers. What was I supposed to tell them? Should I just say to them, straight up, that I may not be acting normally because my mom was diagnosed with cancer? I don’t want anyone to feel sorry for me. I just want to be treated as a normal student. And, because of that, I didn’t tell anyone. Even though I hadn’t told anyone about what was going on in my life, I knew people would find out soon enough. One day, I couldn’t turn in a homework assignment for my English class. I just told my teacher that I had family issues and I couldn’t get it done in time. My teacher just thought I was being lazy and I just didn’t do my homework because of that. I didn’t try to reason with my teacher because I just didn’t want to argue with anyone. But, after class, two people who knew that my mom was sick explained to my teacher that I really had a serious problem within my family and because of it I couldn’t complete that assignment. And, because of this, many more people found out that my mom was sick…
…I’m not uncomfortable talking about this. I admit I only prayed a few times because I never noticed a change due to it. Right now, I just appreciate my mom and dad. I know they are always here for me even though they are in their own battles. I try not to worry and be prepared to help a lot.
I feel like we are closer now because we spend a lot of our free time together. Plus, I’m older and I’ve matured since she was diagnosed. —Richie, 17
From my daughter:
I remember feeling really sad when I heard the news of my mom’s brain cancer. I understood the seriousness of the situation and I couldn’t stand the thought of a world without my mom. I still can’t, and I don’t want to lose her.
That first night that I found out about it, I thought about what might happen if my mom wasn’t there anymore. It was very hard to sleep.
I don’t have any friends who have dealt with cancer in their families but I was scared by the stories on television. It always exaggerates some of the effects but it is still very serious. I talked to some of my close friends about it. I tried praying but I’m not really that religious. But I wanted to try anything I could, so I did.
When I was really upset about stuff going on I never did anything physically to lash out or anything. But I remember crying and being sad about it. I talked to my dad about it the most. He explained it to me and reassured me we would all get through this.
After going through all of it, I think it helped me be more caring for others because I had to help my mom with certain things. Right now, I’m not uncomfortable talking about it. It feels good talking about this.
One thing I learned about my parents, since all this happened, is how hard they work for us. They always do what’s best for us and make sure we’re okay and getting everything we need. If I had to give advice to someone else my age going through something like this, I would tell them to stay strong throughout this process. It will get scary and sad at times but you just have to have faith.
Now that things are better, and we’re getting through this, I feel that my parents are a lot more open and honest with me about everything. —Angela, 14
From my youngest son:
When I first found out, I felt sad and scared that she would die, and I was really afraid. I didn’t really know what it all meant because I didn’t understand what was going on and I was confused. That first night, I was really worried and scared.
I didn’t talk to my friends about it. Nobody I know had parents with cancer. I didn’t want to talk about it anyway because I will probably have cried. I did talk to God about it and I was hoping that she would be okay and I worried a lot. I did talk to one friend about it the most.
When I was angry, I hit some pillows and sometimes I felt really stressed. It was weird having a bunch of other adults in my house cooking for us and washing our clothes.
At first, I was scared and sad but, as she got better, I felt excited that she was getting better and stronger. I was proud of her for fighting it so well.
I’m not really uncomfortable talking about it. A lot of people know about it already. It feels alright to write things down and I’m comfortable about it.
My dad went out of his way to help Mom and that makes me feel happy. We didn’t have to help her like this before because we didn’t have to.
If I had to tell another kid going through this something, I would tell them to help as much as you can, pause your video games and come home straight from school to help at the house.
Now that we’re getting through this, I see my parents act the same now to each other as they did before. It doesn’t really surprise me because I knew how they felt about each other before. —Dominic, 11
Now fast forward to April 2015. Amidst the continued chaos of my disease, here is how I view my family coping with my condition today:
About my husband:
The sweetness and tenderness of Rich continues to amaze me. We’ve been told that cancer destroys most marriages. But despite the stress of daily life with a handicapped person, Rich manages to be patient and sweet (not every minute) and we have learned from our mistakes. We also communicate better than we used to. I’ve accepted my situation and decided that complaining about it does no good; in fact, it can drain the life out of family and friends.
Some days I just want to say, “I can’t believe I have to die and soon!! It’s crazy!!” Some days I just want to cry and keep crying. I’ve been robbed. My life has been taken away from me. There are a couple of people who I want to cry with and let it all out, but sometimes they push me away, saying things that discourage the tears and the sharing.
Thank goodness for my LiveStrong counselor Beth. She cried with me and told me I could call her anytime. Letting it out is so helpful and healthy. Rich has been amazing in strength, love and support. I think this is uncommon and it has kept us together and strong.
About my oldest son:
Richie is very excited about his upcoming graduation May 20th. His grandparents are coming out for the occasion. He received his cap and gown in the mail the other day. We cannot believe how much time has gone by. Our firstborn will be leaving the house in just a few months to go off to college. He drives, and he’s been very helpful to me, running errands and driving his siblings around.
About my daughter:
We’re very proud of Angela. She’s an all-around kid. Her grades are good and she’s an above average softball player. Also, she has good judgment in her choice of friends. We’ve noticed that she has a tendency toward moodiness at times. We have to be careful to separate the occasional moodiness from more serious issues. We make sure we’re always available for the quick chats as well as the longer, heavier conversations.
Angela is getting ready for her first formal dance. The whole family went together to pick out her dress; such a special time for a mother and daughter. She looks absolutely stunning in the dress we picked. We have a full day of pampering coming up to get her ready. Aside from beauty and grace, she’s very intelligent and compassionate. Angela has a good head on her shoulders and we trust her.
About my youngest son:
Domenic seems to be very attached to me lately. He’s not too busy to stop and hug. He is very busy, constantly moving, jumping and coming up with new tricks, both on the trampoline and in the house, like martial arts moves.
Dom is very intelligent and kind. He tries to help people and is always available for me. He’s starting to like spending time with girls. He hasn’t been very organized at school lately; it seems like his mind is elsewhere. He gets frustrated with things that he can’t figure out and he loses his temper. But Dom is also the type of kid who other adults describe as having good manners, and that he’s a pleasure to have at their home. Hearing compliments like that makes me proud. Seeing him through the eyes of another adult is an eye-opener. He’s got a keen sense of humor and a unique fashion sense. Lately, Dom has been impatient and short-tempered, which makes me wonder if he’s overwhelmed with worry about my health. He’s super affectionate, which can brighten any mood.
Dom is really excited about his upcoming 12th birthday. We have a party planned at the indoor trampoline place. I’m thrilled to be here and thankful to be a part of his special day. I cannot even imagine how sad it would be for any kid to have a birthday with a parent having just passed.
I’m home when the kids get home from school. All of the kids are into skateboarding, or longboarding, as they call it. It’s a great outlet for them. The five of us have dinner together at the table. During this time, we have lots of laughs and catch up on the day. No one leaves the table until everyone is done. If and when the kids want to talk about Mom’s situation, we are always open to discussion.
After dinner, the kids do the dishes and help with whatever needs to be done. This allows Rich and I to sit quietly and finish our conversation; this time of day is precious. We are still figuring out the best way to handle my cancer. There can be lots of tension at times. It’s a lot of touch and go, and ups and downs.
Each of our kids have stepped it up and have learned how to do most of the household chores. They have learned about compassion and how to empathize with others. There’s a long list of life lessons that they have under their belts now.
When I look at pictures from when the kids were small, I so desperately want to turn back the clock; it’s so painful. I want to be here for everything!
I’m hoping I can keep an eye on them from heaven.
The reality of cancer is: it’s the longest, hardest journey of your life; and the only winners are those who stick together, as the Elwells have in my case, with an eternal bond that cancer will never break, in this world or in the next.
[Editor’s Note: Mindy Elwell’s battle with brain cancer ended peacefully on November 16, 2016, at her home in Buckeye, Arizona, surrounded by her loved ones. Balcony 7 is proud to have played a part in preserving Mindy’s wish to share her story with others facing the same life-threatening disease. Her legacy of Defy & Conquer lives strong. Rest in peace, dear Mindy.]