Super Woman ain’t got nothing on Tyson.
In order to understand where the Mama Village came from, you have for first understand a lot about my mom and secondly you have to meet my friend Tyson Cluever. We grew up running around the same small town in Minnesota causing trouble and being awesome. I wish I could say that we were close friends then, but in truth we ran in different circles. We both graduated high-school and college and began our lives, but FaceBook tied us together.
Now with all FaceBook relationships you loose track of each other from time to time, but I watched her beautiful family blossom. Then one day I saw something on FaceBook that ripped my heart out of my chest, Tyson had Brain Cancer. I couldn’t fathom those words. She had two sweet little boys at home. She was young. She was active. She was an amazing woman and mother and wife.
I followed her more closely then trying to give what little bit of encouragement I could as she endured the hell that is cancer. I watched an amazing woman turn into a warrior. She fought so hard and with the fierceness of a mama. I can’t tell her story as well as she can.
My interview with Tyson. AW: Aurora Whittet | TC: Tyson Cluever
AW: Tell me about your journey with cancer.
TC: I started having symptoms the beginning part of January of 2015. Severe headaches, exhaustion, pain in my head, dry eyes. After about eight days of trying to mitigate with ibuprofen, the nurse practitioner in town ordered a head CT. On January 27, 2015, something was found in that CT. After a biopsy on February 3 and visit with my St. Cloud neurosurgeon, I was officially diagnosed with brain cancer (GBM) on February 19, 2015. My treatment plan was surgery, which after switching my center of care to Mayo was completed by “the guy” who does GBM removal, chemo-taken orally at home, and radiation-completed in 30 days in Alexandria. How did I feel? Well, terrified. I couldn’t grasp that even with treatments, I could end up with cancer again. And/or die.
AW: I know you have two little ones at home, how did you explain to them what was going on? What worked best?
TC: Kael, my six year old, is basically a genius. He understood that there was something in my brain that was making me sick. I was straight up with him-told him I had to have surgery and then would go through chemo (taking medicine to kill any cancer cells living in my body) and radiation (a ray of “light” that would also help kill any cancer cells living in my brain). He cried a lot, was scared, but was my little prayer angel. He would also draw pictures of my brain and show me that the cancer isn’t in there anymore. He’d also draw lots of “cancer sucks” and “Team Cluever” pictures. Leif, who was 9 months at the time, was pretty oblivious. He probably knew I wasn’t feeling well, but his laugh and smiles and bright eyes helped me smile. I was forced to quit nursing and couldn’t carry my boys around due to weight lifting restrictions post-biopsy and post-surgery. That really sucked.
AW: Were there any support groups or places you were able to find help and support for you and your family that you want to share?
TC: I didn’t have a support group immediately. I am now attending a local group in Benson at the hospital. It helps to speak about whatever is bugging you like having cancer, surviving cancers, having treatments, etc. I will be honest, I tried my hardest to NOT say anything to anyone if I was feeling low. That probably sounds stupid, but that’s how I dealt with it. That and stupid, non-PC, cancer jokes.
AW: What things helped you through this horrifying experience? What ways were you able to unwind and live?
TC: We were blessed to go on a trip to Orlando to see Universal Studios and Sea World. Most of it was comped and we had a great time. I crossed off several bucket list items off that trip. Otherwise, I’d just try to do all I could to feel normal. Make dinner when I had energy, even if it was the eighth time we’d had tater tot hotdish that month. Walk. Go out with Jon for dinner. Celebrate clean MRI’s. Cross more stuff off my bucket list. Go to the Nutcracker ballet with a high school friend, go to MN Lynx games, go on a kayaking trip this summer. Making plans to look forward to so I can remember I have stuff to LIVE for, besides the family. But, even without all the trips and stuff, I’ll still have them. 🙂
AW: If you were to tell friends and family how to act around you was there anything you wish they would have done or not done? I know with my mom she said people avoided her, and that broke her heart.
TC: Wow, I don’t know how people can avoid cancer patients. It’s not fricken contagious. Jeez. That sucks. I guess I don’t know if people were ever uncomfortable around me because I tried to be laid back about the fact that I had this terrible thing happen to me. I can’t pretend it didn’t happen. My one friend would ask questions about why they do that surgery or recommend this treatment or whatever. It made me feel less like an outcast and more “normal” when I could answer those questions. My physical appearance changed so much during treatment. I gained over 30 pounds of water weight (plus the mandatory “I have cancer and like burgers and that’s all that tastes good” weight) and puffed up. I was on a heavy dose of strong steroids. Once I was off of those, I lost about 20 pounds and now have started running and doing weight training and am trying to eat healthier, which has allowed me to lose some more weight. I seem to get at least three “you look so good’s” a week. I appreciate the compliment but what am I supposed to look like? Someone who’s dying? Walk with a cane? Do I have to show my scar? Do I have to be blunt and say “yeah, cancer and the stress and the treatment/s can do that do a person. Don’t like to eat, can’t enjoy cake anymore, peanut butter is awful. But thanks for noticing my sudden change in features.” Do I have to wear a friggen sign? And how detailed am I to be when someone asks “how are you?” I usually say “i’m fine” but can I say “oh, today was a pretty shitty day. I can’t get my work done, I forgot how to add, I forgot to pick my kid up from daycare again, and have no desire to cook, ever again.” I always appreciate the compliment and people asking. I suppose it’s better than being ignored or ignoring the pink elephant in the room. But then, when they stop asking, does that mean they don’t care anymore? It is so lame. I shouldn’t get annoyed by such simple questions, considering the MOUNDS of support I’ve received during cancer-fun-time, but I do.
AW: What is life like after cancer?
TC: Life after cancer. I don’t know. I’m still adjusting. I’m trying to remember that even if I’m tired, stressed, crabby, overwhelmed, unable to focus, forgetful (more than usual), whatever, that I need to just stop, breathe, and keep my voice at a stable level and to not O.D. on movie theatre popcorn. 🙂 I have more desire and passion to live my life more fully now. I HAVE to. I should have been since the day I came into this world, but for some stupid reason, having a crap storm show up in your front yard makes you go “huh, well then. I guess it’s time to buck up and get it done.” Even though all scans show my cancer is gone, I have a bucket list. Travel, concerts, new adventures somewhere. Anywhere that’s not here. Visiting the museum or that small cafe I keep driving by. Shooting my bow in the backyard because I can. Making plans with friends because I WANT to legitimately see them. I hate saying “let’s get together” and we never do. No more excuses, minus an empty checkbook. 🙂 Focus on life. Try to avoid the “what if’s.” Focus on the love and compassion I’ve seen come out of nowhere and just soak it in. Smile. Live. Be helpful to others. Pay it forward.
So one day I was driving to work and Tyson had popped up in my FaceBook newsfeed that morning, so she was on my mind. I was thinking about her and praying for her. Hoping she had a lovely day and in that moment in January 2016 I had an idea. It hit me like a garbage truck (and I have been hit by a garbage truck so I know how that feels, but that is a story for another day).
You see Tyson had Brain Cancer, my mom had Uterine Cancer, neither of those are cancers that have books about them to help children understand what is happening to their mama’s right before their eyes. I decided that day I wanted to write a children’s book, called Mama’s Knight and make it personalizable so that each mama could use it, and write in her diagnosis, her treatment plan, put photos of her child in it. So that every child could understand what was happening and make them know they are part of the journey, that they haven’t been forgotten. I spent the next seven weeks writing and illustrating and dreaming and trying. I showed it to Tyson, I was so nervous, and she loved it. I can’t express my relief knowing she thought it was worthy. So I took it a step farther and showed my publisher Amy at Wise Ink and she cried…and I cried…and needless to say they approved my project. Mama’s Knight will publish in July 2016! I couldn’t be more proud of that. If my book can help one mama, that is happiness.
I know that Tyson struggled with being physically strong enough to play with her kids, to pick them up, to feel that she was there with them. So part of the book gives ideas on activities and they will coincide with the Mama Village App, where mama’s can search activities to do with their kiddos by keyword, age of child and most importantly energy level of mom. So every mama can be part of their child’s life no matter the hell they have to walk through. There are coupons so that mama has permission to ask for help playing with her kids, because lets face it mamas suck at asking for help. Even super heroes need a helping hand. There are areas to scrapbook adventures, and lastly this beautiful community on themamavillage.com where I hope to unite mama’s of all kinds of life in a place where we support each other, share ideas and upload activities. There is so much love to share.
So you see Tyson is amazing and what she did was chose to live, be happy in the face of evil and love her family. It sounds so simple, but it isn’t. Pain and fear and medications and surgeries and daily crap can steal your joy so easily. It can steal more than the cancer does. So this is why I want the world to stop turning just for this moment and see Tyson and every mama walking a similar path so no one will feel alone on their journey.
We are all warriors. Love each other. Love your children. Love your family. Love your friends. Life is short and crazy and unexpected. And every one of us has a clock ticking and not one of us knows truly when it will end. So live and love and be happy and optimistic and thankful. Every moment is a gift.