I’ve been wanting to write this for months… needing too really, but there has been too much swirling around in my head. Too much change. Too much confusion. Too much raw emotion that I couldn’t articulate in words.
Cancer holds so much power. I didn’t realize how much until I was dragged down this new jagged, pot filled road kicking and screaming. No one in my circle had been affected by cancer until now. I was so naive.
I knew it was a terrible disease, but didn’t know how obnoxious it was on so many different levels.
I knew our lives would change, but I didn’t know every area of our lives would be affected some how. My mornings, my nights, my thoughts, my triggers, my errands, my house cleaning, my relationships, my parenting, my grocery shopping and my tv watching. Everything.
I knew it was filled with emotion, but I didn’t know that polar opposite emotions could sit uncomfortably content beside each other in a shared moment. Hope and fear. Acceptance and anger. Gut-wrenching heartache and gratefulness. It’s a trip.
My mom has pancreatic cancer. Of all the major cancers, it’s the worst one. They caught it early but not early enough to operate. We are hoping that 6 rounds of chemo shrink it enough to become operable. If it is not shrunk enough in the CT at the end of this month her chances of surviving more than 5 years is 8%. 75% of patients die within the first year of diagnosis.
My mom and I are very connected. In a way that most don’t understand. It’s a connection and trust that only comes when you have depended on each other for survival through trauma. It’s a connection that only comes when you are connected by blood, co-dependence, suffering and being a first born to a mother searching for air in an abusive relationship. I can feel her fear and strength. I can sense her emotion and mood from another room sometimes. The idea of that connection breaking is debilitating.
So far my mom is handling the chemo really well, minimal side effects… when she gets it. She is on a protocol that gets a fairly long bout of chemo (5hrs) every two weeks, but her numbers have been too low three times. Three times her chemo has been postponed. The tumour has had 3 extra weeks to grow. It is terrifying.
She questions every little twinge she feels and wonders if it is the cancer growing. We (myself and my sisters) question every look or symptom we see. Does she need rest? Does she need food? Does she need to be rushed to the ER because of a fever? Mom doesn’t want to inconvenience us, or interrupt our lives so she tries to put on a strong front as much as possible. It is exhausting for everyone.
My husband and I bought a house with my mom and have been co-living for about 5 years now. My kids don’t remember not living with their Marmee. She has a pretty special relationship with each of them. I can’t let myself think about her not being there for them and how they would handle that.
Our routines are all affected. Up until now, Mom was our biggest supporter with the kids. She still is but it has changed, a lot. She used to help with the kids more, babysit if I had a quick appointment or let a child hang out with her if they just needed to get away from sisters or parents. Livi would go downstairs for a bed time snack almost every evening. That has all switched now. She doesn’t have the energy to watch the kids for any extended period of time. She has to be very careful of germs they might carry too. I run more of the errands and help with Maggy (my aging sister with Down Syndrome and Alzheimer’s) when Mom doesn’t have the energy.
Co-living is a serious benefit through all this though. I’m so thankful we made that decision. It has worked out so well. She helped me for years with Sofie’s extra needs and a surprise baby and now I get to help her through cancer and with Maggy. I don’t know how we would manage if she was in her own separate house.
While I think I am handling the change of pace in our lives as best as can be expected, I’m definitely depressed and exhausted. Some days are better than others. I feel like there is a wolf at the door though. Mom is doing really well right now, but each time chemo comes I’m waiting for the ball to drop. Waiting for the side effects to overtake her. Waiting for either certain outcome. There is such a pull between being hopeful and being prepared.
Cancer is a thief.
At best, if we can beat it, it has stolen the months and maybe eventually years of dealing with the cancer. Hours each month at hospitals, days sleeping and sick, months worrying about what might happen, staying away from people and her grandkids because of germs. Mom has been crying on one side of the door while Sofie is on the other calling and begging to be let in to cuddle with her, something they did regularly before. Sofie doesn’t ask to go downstairs to see Marmee anymore. Stolen moments.
If we can’t beat it, it will steal all the moments that Mom is supposed to be at. The birth of possible future grand babies, their school productions, graduations, first loves and great grand children. Family holidays and my household will never be the same. It will steal mediocre but vital moments like shopping trips, movies, bitching about nothing at the end of a day, walks at the river. It will steal shared laughter and tears.
I remember when Jon’s dad died people said things like “God has a plan”. Don’t ever say this to someone grieving. Cancer is never God’s plan. Death is never in God’s plan. Disconnection, pain and breaking relationship is never in God’s plan. Our Creator wants more for us.
We live in a broken world, filled with disease and turmoil. I don’t think I’m lucky enough to escape it all but I hate it and get overwhelmed by it. I feel the unfairness for my mom deeply. She’s been through so much. She got a raw deal in life, and now cancer. She was never loved by a man like she should have been. She had to work and fight for everything that she has. Nothing came easy. I’m so thankful that she never gave up and I’m not expecting her to now either. Because of the choices and sacrifices she made I am a better person. All of her children are. We owe her everything. Because of her, I had the tools to choose a partner who loves and respects me like she should have been loved and respected. Because of her I am able to give my children the childhood that she wanted for us.
Fuck Cancer! I’m tired. My house is a mess and I have no capacity to do anything about it, though I so wish I did. A clean and organized house would go a long way for my mental health. My kids are feeling the energy change. They know Mommy sits on the couch a lot more now, lets them watch more TV than ever before, only cooks easy meals and cries or snaps at them very easily. Our eating out budget has tripled. I try to hide it but I can’t. Cancer errands, appointments and checking on Marmee and Maggy are a big part of our life now.
I am so very thankful for my family through this. My sisters and I can fight like cats but we always have each others back, even if we are mad at each other. We’ve all stepped up in our own ways, supporting each other and are dealing with it all the best we know how. We each have our own journey through this but we are doing together. My husband is just wonderful, supportive and patient. He helps out with the house and kids more to free me up for my mom and to take care of myself. I already knew my mom was all kinds of strong and this just continues to show me that. I wish she didn’t have to be though. I couldn’t be more proud or happy to be part of the family that I am.
At the beginning of this journey I had hoped to see joy through it all. I wanted to experience the beauty in the pain. I can honestly say that I am experiencing it and my kids are a big part of that. I love watching the life, dance and love in them. Joy flows around them.
Someday’s it is all too much still. It’s hard to dance with a devil on your back so I’m going to shake him off. Life will always call. It is still happening and it’s too beautiful to miss, so we keep going.
“I’m ready to suffer and I’m ready to hope” – Florence + The Machine
After reading your blog I was speechless. Not having gone through what your family is right its hard ti imagine your pain,frustration and fear. Your mom has parented well,you appreciate what she has shown you and learned from her. I have thought of her never feeling loved like she should have from a husband,I’m sorry for her that she missed out on that,but speaking from experience children are the best part of life (most of the time). Daughters are amazing,I’m so thankful she has 3 and you have each other to lean on. You are a wise,strong and an articulate woman! Your Schmidt blood is a good thing!! Love Jane
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Thanks Jane. She is a pretty incredible mom!
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