Awake my Soul

I was so ignorant about the power that cancer holds. I was so unready. Is anyone ever ready for it?

Confusion and fear of the unknown clouded so much of my experience. Confusions from what the doctors where telling us, from the effects of cancer and “cancer killing” chemotherapy on the body, from all the conflicting emotions, from the relationships broken and strengthened, from the energy depleted and given, from the guilt and from the joy.

The doctors where giving protocols based on educated guesses at best. Pancreatic cancer is not one that many survive. Researching how to fight the cancer came up with so much more information and ideas than my mind was able to handle. My heart yearned for answers but there are so many half truths, lies feeding off desperate people and taking their money, special circumstances, and anecdotal evidence. Sifting through it all is impossible.

I was thriving in all the chaos and uncertainty though, as I do… a gift or a scar from my childhood. I was fighting the unraveling with control, knowledge and attempts at preparedness for every possible outcome. It was an exhausting, hyper alert state. It’s not just going down one road. It’s going down 18 different roads all at once and having all the emotions that go with each one, but keeping them all in check so I didn’t fall apart. It was unsustainable.

Then Mom was going to live… so it was safe to fall and feel again.

I’m choosing weakness and vulnerability now, or at least I’m trying to, and I’m starting to see strength and bravery in myself. I want to show my brokenness more and shine the strength that sits there. It’s scary and empowering.

It’s strange how just allowing yourself to feel is so healing. I’m still struggling but feeling that struggle is life-giving and so uncomfortable… Some days I feel pathetic, lazy and judged for being depressed now that Mom is getting better… She is going to live now, I should be elated. Why did the grief have to come now?

Days where I have practiced self-compassion, a skill I am very new too, I feel brave. I want my girls to know that bravery is not fearlessness, but that it is feeling that fear or sadness and still doing those hard things. So today, I’m scared, sad and wanting to give in to avoidance and numbness but I’m choosing to go forward and feel… Letting fear and grief sit and my table and mold me. It is all part of becoming a better version of myself.

This is a post I’m still wrapping my mind around. It was supposed to be a about celebration and our trip to Disneyland and morphed in to something totally different. Mom has been cancer free, officially, for 3 months now! I’m still processing the relief, the gratefulness, the guilt, and the exhaustion still. This is me tonight.

The trip was celebratory. Disneyland is the happiest place on earth. My kids, my sisters, spouses and Mom had a blast! It was a blessing and seeing Disneyland and the characters through my girls’ eyes. It was so fun to spend time as a larger family, connecting, laughing, hot tubbing, drinking and getting along! I’ll try to tell you about it again with pictures instead of words.

As fabulous as our celebration trip was, it was not restful… I still need the rest I think. Through rest, oils, yoga and a whole lot of self-compassion and care my soul is waking up again. There is a song, by Mumford and Sons, called Awake My Soul. It was on my ‘soul music’ playlist this past year. It speaks to my journey towards thankfulness through my moms cancer, to rest and a now to new realization of my being, or more appropriately, my becoming.

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Sofie is 8

My second, but oldest, child is 8 years old.

Where did the time go?! I look at her and see more teenager than baby.

She is  3’9 tall and  48 lbs. Size 6 clothing, nearly into 7. She is in typical gymnastics and swim lessons and rocking them! I love seeing her work hard. She has really improved her gross motor skills. She can swim a full meter and improving weekly, though our reasons to put her in swimming was to give her the skills to go with her fearlessness… she got some more skills but more confidence and fearlessness to go with it and scare us half to death when she jumps off the floating boat in the deep end with her sister! She’s got skills on the trampoline and tumble mat. She is talking and learning so much more this year and I am continually in awe of her.

We’ve had a very busy last 6 months but we still pulled off a birthday party where Snow White came and visited and got a few Birthday pictures. Enjoy… and Happy Birthday Angel!

Cancer

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.

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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.

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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.

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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