The ‘Monster’ – I am still winning!

How do you tell your kids you have cancer? At the ages of 3,5, and 7 the ages my kids were when I was diagnosed I wasn’t sure. The ‘c’ word IS scary. I was struggling with it enough I didn’t want my kids to be scared too. BUT – my kids instantly knew something was wrong after I was diagnosed as for several months their life changed, I guess it really changed forever.  

After my dx I was sad (like really sad), cried a lot, and Paul and I had tons of private conversations (many of me telling him what he should do with my life insurance money 😊 – he hated those conversations but it made me feel better especially knowing he’d be driving around in a new jeep and that the kids would always have what I thought they would need). I also traveled coast to coast for eye surgery, radiation, and then monthly for a clinical trial. You name it..our daily had changed and changed so fast.

So – How do you tell your kids you have cancer? At first we didn’t call it cancer….we called it the ‘monster’, the big bad blue monster. Blue because the ocular melanoma ribbon is black and blue. We called my cancer, the tumor the ‘monster’ and mommy was seeing the best doctors in the country to kill it. It seemed to help the kids and I talk about some of our daily obstacles a bit easier.

Funny side bar story – Last June, a year of talking about the ‘monster’, Connelly made the connection of the monster and my scans asking, “Are your scans to make sure the ‘monster’ is not moving down your body?” I was surprised by her comment but responded, “Yes, that is exactly what I am doing, I need to go to the hospital to make sure the monster is not moving.” I am not sure how she knew or when she made that connection, but I was blown away. The next morning, I was getting into the shower (I don’t remember the last time I went to the bathroom or took a shower without someone barging in so that morning was no different). Connelly barged in and lucky me it was ‘my time of the month’ and Connelly yelled, “Mom, I think the monster is coming out of your bottom!” I feared how to share about the female body she’s only 6 but laughed happy tears and did everything I could to change the conversation comforting her the monster was not coming out my bottom. In that moment I laughed, I cried, and I started to realize without me saying much my kids were putting together the dots.

Paul and were confident the ‘monster’ was all they needed to know at that time but that quickly changed right before I had enucleation (my eye removed) as Cannon started asking more questions. Mom what is the ‘monster’ really called? What is your problem again? What is your disease called? Is it like leukemia? He was asking as he wanted to research it online as he too was putting together the dots. Cannon has a friend fighting leukemia and another friend in class whose sister has cancer. That made me realize Cannon needed to know more, it was time. SO – I laid in bed with him explaining the best I could. Mom has Ocular Melanoma. Ocular because it’s the eye and melanoma is a type of cancer. Your mom has eye cancer. His first question was – if I was going to die….I explained and reassured him I am not dying now but that is why I have to always go to the doctor, have my blood drawn, get scanned, take special good drugs, the list went on. I explained its scary and it’s ok to be scared and we can talk about it as much as he wants. I also quickly learned Connelly knew more about cancer than I assumed as one of her favorite TV shows has a girl fighting cancer. The teen lost her hair because of her chemo and her friends were supporting her. Growing up I never remember talking about cancer – but my kids are already surrounded by it from what they watch on TV, how supportive their amazing school is by supporting families whose children are battling, and what they talk about kid to kid about their fears and daily lives – they know and talk openly about it.  It’s part of their world. It makes me sad this is part of their world but makes me comforted they are not alone or feel so alone. I tried to mask what it really was in the beginning but now we talk about it openly.

So – how do you tell your kids you have cancer? I am still not sure BUT looking back I would not have changed the conversation or eliminated the ‘monster’ BUT I learned to never underestimate my kids and their surroundings, their environment. These kids (all kids) are smart, they connect the dots and although we want to shelter and protect them forever I have learned to read their queues and give them as much information as they need in that moment. Kids crave conversation and knowledge and empowering them with it will allow them to adapt and grow. It makes me sad my kids have to live a life where their mom has cancer and has fears that many don’t BUT I know because of this horrible disease it will change my kids for the better. It will make them live a life where they appreciate the little things more and live for the day. It will make them understand that life is not easy, cry when your sad and celebrate each win. It will make them be more flexible and hopefully put others before themselves and be more understanding to those that are struggling . The love and support they have seen others give our family – I know they will proactively acknowledge and give back to others in need.

THE GOOD NEWS – I am still winning – the ‘monster’ is still at bay! I had my quarterly MRI this week and once again I got the news NO METS! Once again, I can breathe freely for another 3 months until I do it again. As for my eye, that is also healing very well, finally! I should have my new pretty lens (eye) the end of the month and should be able to ‘blend in’ again. I have never been one that wants to just ‘blend in’ but I truly welcome that now.

Background on my cadence of scans: Because of my class 2 (which I still need to explain more and will in future post) I am scanned every 3 months as my chances for metastasis are so high. Statistically – 50% chance it will spread in the first 3 years and 75% chance is will spread in year 3 and beyond – if it spreads most likely: the liver, brain and lungs. So, I have a liver/abdomen and now orbital MRIs every 3 months and then throw in a chest every 6 months with the hopes if it spreads we catch early to intervene with some plan. So the ‘scanxiety’ will continue indefinitely. 

Ever heard of scanxiety? It’s the worse. Many say I should not worry about anything until there is something to worry about but that is pretty much impossible. I found this link a while back and truly feel like I was reading my own words. Scanxiety is the real deal but this article helped me change my way of thinking and managing the anxiety. I will not lie though – I am still a complete mess leading up to the day until I am told the good news – just ask Paul.
https://www.wbur.org/commonhealth/2018/03/23/onco-anxiety-twinge-pang?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20180325&fbclid=IwAR3QhtbsexfD1D3zJ2NeOfwDFafaPVHyKzsWbozuJMRHE_VTIqqqi9pUWUg

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