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

 

 

 

 

The Third is Three

DSC_0311My baby is 3 years old.

That kind of feels like a punch to the gut but she is such a fabulous 3 year old and I’m loving watching her grow up.

She has THE BEST smile. I can’t get enough of it. Her eyes sparkle. It’s a beautiful thing.

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Evelyn is my passionate child. She is all or nothing. Oatmeal for lunch might be the BEST thing that has ever happened to her. She will clench her fists and teeth and jump up and down in excitement! OR she doesn’t want oatmeal and the world must answer to her wrath for suggesting the unacceptable idea! She will cross her arms, glare, stomp her foot emphatically and growl or huff. It is epic.

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Exhausting… but epic.

Turning three has seen her language skills blossom. She is talking so much and using complex sentences now. Her personality is booming and she is turning in to the social butterfly one would expect from a child filled with vivaciousness.

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She gave up napping the day after she turned three though it still catches up with her every once in a while and she falls asleep in the car or cuddling in my arms before school pick up. I love it. She is still my baby. Though she is nearly 36 pounds and 3 feet 3.25 inches  tall! She looks like me but I think she is going to be tall like her daddy!

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She loves Paw Patrol a lot. We have had to enforce more rules around television/iPad use because of her love of watching Paw Patrol. he is growing up in a different world than I did… even than her sisters did. I didn’t even own a smart phone until Livi was 2 and now we have laptops, an iPad and we are in the era of Netflix.

Evelyn is full of spunk and independence. I’m excited to see how she will change the world, because there is no doubt in my mind that she is going to accomplish some amazing things. I’m terrified to parent her through her teen years. She reminds me a lot of myself, without the fear…. Lord help us. She is so lovely though. I’m so honoured to be this darlings Momma. It’s going to be an incredible ride!

Happy Birthday Monkey Butt! I love you.

Becoming Thankful

Our summer was magic. I wasn’t ready for it to end. For many reasons it was a new beginning for us. We have started a new era as a family. We are done with baby gear, for one. I’ve kept a stroller for long walks and a booster seat, just in case, but all things baby related are out of the house. Essential oils have played a major role in the peace and awareness that is in our family now. We have a new, calmer normal. Sofie’s behaviours have been curbed and her abilities have sky rocketed. We are all functioning as better versions of ourselves. We are feeling how we want to feel. We are leaning into the emotions more. Becoming who we want to be.

Myself, in particular, has been changing. I’m on an interesting journey right now. Jon actually worded it beautifully. He said “you’re just letting more people see the real you.” (He’s generally not the most romantic, so this made me swoon.) My wall is coming down. I actually texted one of my good friends, after I started noticing people approaching me more, that it was scary! I’m still not sure how I completely feel about all this connecting. I like my protective wall! It’s easier. I’ve never been someone who is very approachable. My wall has served me well!

I’m realizing what being vulnerable really means. I thought authenticity and vulnerability were more similar than they actually are. I thought, in order to be authentic I was already vulnerable because I felt like I was laying myself out there already. I used authenticity as a way to challenge people to judge me and keep people at bay. It worked. In turn, I felt justified to judge them. Authenticity is something that I truly value. Part of my core beliefs. I didn’t fully understand it though. I’m embracing my journey of becoming through vulnerability. I’m realizing, in order to truly be authentic, I have to be vulnerable. It’s an easier choice to make now that I understand it.

With vulnerability and real authenticity working so well together, now comes true gratitude. I’m feeling real gratitude now. Living it. Giving voice to it…

On this Canadian Thanksgiving Weekend, I’m thankful for a lot. Here is me giving voice to it. I’m thankful for:

  • My compassionate, thoughtful, insightful, balancing husband. He’s a ridiculously incredible, capable father and we do life so well together.
  • My Livi. Her heart is pure gold. She is compassionate, kind, emotionally wise beyond her years and gentle. She is quite possibly the best big sister I’ve ever met and I don’t know what I did to deserve such a precious, sensitive soul in my life. I love her goofiness and willingness to help anyone.
  • My Sofie. She is my brave, warrior princess who could survive anything! I am always astounded at her ability to overcome on a daily basis. I love her dance moves, joy and empathy.
  • My Evelyn. This kid has enough passion in her to fill a stadium. She is my experiential learner and as scary as that is for me it really is so very beautiful. She is independent and keeps trying even when its hard. I love her humour and how she says “well….” before answering a question.
  • Livi’s grade 2 teacher, Mrs. N. Livi has come home every day since school started with wonderful stories about how much she loves grade 2! Her favourite subject is now writing, which was her least favourite last year! She told me she LOVES Mrs. N! One of the most beautiful things I’ve heard is that they end each day going around thanking a classmate for something! I feel like this might be a magic year for Livi.
  • Sofie’s EA, Mrs. I. This is her 3rd year with Sofie and I think this is the best year yet! She is thoughtful, kind and patient. She loves Sofie and Sofie loves her!
  • For Sofie’s ENT and Anesthesiologist during her tonsil and adenoid surgery last week. Here is the full story..

When Sofie had tubes put in over a year ago she was already stirring before we were in the recovery room. She metabolizes anesthetic and freezing very fast. She woke up in a sterile environment, in a bed with bars, with nurses caring for her and no mommy and daddy… just like in the orphanage. She screamed and thrashed and fought and raged for 3 hours, until Jon and I decided to just take her home and hope that calmed her down. The nurses didn’t know what to do for her anyway. The second we stepped outside of the doors of the hospital she started to calm down.

I was TERRIFIED we would have a repeat experience and didn’t have the option of going home this time, since we were planning to stay at least one night. I asked, begged, pleaded with anyone who would listen that we be let in the recovery the second she is there too. My doctor listened and heard me and know I wasn’t crazy but said he didn’t have the control once the surgery was over. I teared up imploring the anesthesiologist student who was the first one I felt really listened and understood. She brought out the head anesthesiologist who cam up with a plan to get us in recovery asap and try a bit of a different med cocktail. I was thankful but still very anxious.

Then the most cathartic, beautiful, respectful gift was given to us… the doctor came out to update us that everything went fine and brought me back in to the operating room while she was still intubated. Walking in, I knew this was an honour. I knew not all parents could handle seeing their child like this… blood still being cleaned up and a tube breathing for them. I knew that our ENT had talked with the anesthesiologist and told him our concerns where not false and I was not a helicopter parent. I knew the anesthesiologist was the one in charge and allowing me to be there in this moment.

They say people don’t remember what happens that early from waking up but I know Sofie could feel my presence and was comforted. She started to stir with the tube still in her throat and bolted to a sitting position, not uncommon for this med cocktail, I was told. Blood spilled out while they removed the tube and she leaned in to me, not the nurse, as we were on either side of her. I fully believe she felt my energy even if she wasn’t conscious of it.

I was allowed to carry her from the operating room to recovery. This is where it all hit me. She was waking up. She wasn’t crying. She felt safe. I was so honoured and respected by the operating staff at Children’s hospital.  Sofie was in my arms and the team was walking with me down the hall. It was cleansing for both of us, from the trauma we experienced last time. Tears of thankfulness were welling in my eyes and I still don’t think I adequately expressed how grateful I was through my awe.

And through it all… Sofie didn’t cry. Not once. Just shows how attachment is SO vital in so many areas of life.

  • For my family and their ability to always make me feel loved! One sister brings me tea and baking often and makes herself available for errands when I need. My other sister helps with childcare as often as she can. My mom is beyond incredible and helps with everything. She taught me how to be a mom and even had a pot of delicious vegetable soup for our dinner the night we came home from the hospital.
  • For the friends who have been part of my journey this summer. It’s been pretty rad and they have been my sounding boards, my supporters and my challengers.
  • For tea. Need I say more?
  • For a beautiful house, in a beautiful city, in the most beautiful province in the most beautiful country.
  • For essential oils that help facilitate positive mental health and good physical health!
  • For courage and creativity and communication and strength and vulnerability and authenticity and for becoming.
  • For my journey. I don’t know why now is the time… but I’m thankful. I’m excited. I’m scared. And I think I’m ready.