Breast Cancer – Sunshine, Angels and Rainbows

The Journal

I’ve been watching Firefly Lane on Netflix. It’s emotional and complex and quite honestly pretty brilliant. My sister read the books and just recently warned me it could be triggering. If you’re watching it now or plan to, I’ll let you know you should close this window so you won’t spoil anything! Because, I had to. I had to know how it ends. Because I wasn’t sure if I could watch it.

If you’ve never watched the show, it jumps all around through time. We watch a friendship form and go through 30 years of change and heartache. But the story is not told in the linear fashion but rather through four or five different spots on the timeline. In part one of season 2 they keep showing a car accident. So I assumed that that’s what my sister was warning me about. And while the car accident was pretty terrible, I’m glad I was prepared to deal with how the season ended.

I absolutely love both of the actresses in the series which is why I started watching it in the first place. I have loved Sarah Chalk since I watched her in Scrubs. Katherine Heigl was my favorite from when I used to be able to watch Gray’s Anatomy. Before the accident.

My new post-grief life includes googling the ends of things. My husband absolutely hates it and says I spoil everything. I think I just prepare myself in case there is going to be something triggering and what I am watching or reading. And when my sister texts me and warns me that I might want to know what’s coming, I take heed.

So now I’m sitting here with a bunch of balled up tissues because I know that my favorite character is going to die. From breast cancer. They reveal at the end of part one that she is diagnosed with stage 3. So I needed to know what is coming, even though they’re not going to finish the series until June of 2023! And now I’m a puffy faced mess.

Amongst the remainder of my father’s stuff that my sister picked up when my stepmother died, was a journal. It was my Mom’s journal. My stepmother had mentioned it and had been uncomfortable about giving it to me. I honestly didn’t press the issue because our relationship was tenuous at best at times. And I kind of forgot about it. It sounds terrible to say that out loud, but I did. I have been living surrounded by my deceased parents stuff for years. It was hard to fathom there was something I hadn’t seen or touched that was my Mom’s.

So I started reading it. This journal is the Indiana Jones equivalent to the Ark of the Covenant for grievers! My Mom passed away 26 years ago and now all of a sudden I had access to her thoughts. The first few pages were blank, the first entry is from when she found the lump in her breast. Then there’s a whole bunch of more blank pages and then she starts to talk about everything as she’s going through it. I only got a few entries in before I needed to take some time off. Because it was a lot.

I don’t know what I was expecting to find. It kind of feels like an invasion of privacy, but at the same time she’s documenting her road through breast cancer in 1996. Which is crazy for me to think about because everything that is written there is a term that I understand from all of my years of walking for Komen. It’s also very crazy to think back to her journey being the beginning of stem cell use. I have so much gratitude for how far we have come, technologically speaking. But we’re certainly not done yet.

When I read those first few entries, it sounded very similar to my blog. Our writing styles are so alike. I smiled at that. It felt really good at first. It made me feel really close to her, which is something I haven’t felt in 26 years. But I only got a few entries in before I had to put it back down. Because now I’m sad. And I’m missing her all over again. This woman that is so like me is missing from my life. And has been for the better part of it. It is heartbreaking.

I watched this scene on Firefly Lane of this 40 something year old woman getting diagnosed with breast cancer and I lost it. Because in that moment, I understood her fear and anxiety. Because I read it in my Mom’s journal. And in 5 years I will be the age she was when she was diagnosed, so it really isn’t that far fetched for me.

I miss my Mom daily. Even this far out, I am so very sad for every single thing that we have missed out on. I will read more of the journal when I am ready. I so very much want to know every little detail while simultaneously wishing I wasn’t opening up this Pandora’s box right now. But such is grief.

Taking Care

I was among friends over the weekend, and there is a woman that I consider one of the most grief evolved people I have ever met. I am in awe of her ability to speak honestly and openly and be completely vulnerable. The only time that I feel like I am able to do that is through writing. So here we are.

She said something that resonated with me. And made me think about stuff I apparently had buried pretty deeply because I haven’t thought about it in a long time. I started to think back to when my mom died.

Now, we’re talking nearly 27 years ago. I’ve lived longer on this earth without my mother than I did with her. Being a mom myself, that realization makes me very sad.

Some 27 years ago I was 16. My mom had been diagnosed with breast cancer when I was 14, roughly a week or two before I started high school. She was sick and in and out of the hospital, my freshman and sophomore years. My dad was an alcoholic disaster. He struggled to keep it together when things were good. My mother’s diagnosis and impending death pushed him completely off the wagon for good.

I remember when my mom first got sick that my sister and I had to start doing our own laundry. My mom had written out on index cards how to sort and wash everything and taped it to the cabinets above the washer. There’s so much more that I wished she’d left instructions for. Like how to live without your mom.

I will never forget the phone call in the early morning hours of May 25th. And my sister crying. I’ll never forget that feeling, like the Earth shifted on its axis. We knew it was coming, but it doesn’t make it any easier. I remember the last time we visited her and she was barely conscious. I knew in that moment that time was up. What I don’t understand is why we weren’t there. Why did we leave? Why weren’t we there with her when she died? Was it my father’s choice? I hate that she was alone. Why didn’t I ask if we should be there? Why didn’t anyone else? I will regret this forever.

I wish she had left instructions on how to deal with my father. After she died things got bad. He was never around and when he was, he was drunk. And either mean or depressed. I had to learn how to take care of myself. No one cared about my grades or where I was or what I was up to. My father’s grief was so bad that the rest of us ceased to exist to him. He died on May 25th with my mom. And as the only other person in our house, I was left to pick up the pieces. And it was terrible. But I didn’t know what else to do. Or how to fix it. So I just grinned and beared it. I was fine. Everything was fine.

I wish she left instructions about how to handle my grief. Because we didn’t talk about stuff back then. It was just expected that my mom died and I had to move on. And parent my alcoholic father. And create these awful trauma patterns that I would spend the rest of my adult life trying to break. And it’s really hard to unlearn that you can actually depend on people. That you can actually ask for help. Or that you can actually say no. Or that your worth isn’t just tied to caring for/doing things for everyone else.

And I miss my mom. Because no one has come close to taking care of me like she did. There are so many times when I cried out for her. When I was in labor with Darcy, pretty much anytime I’m sick, and the ambulance ride after Benny and I were hit by my car. Because I needed her to make it better. And 26 years with her being gone, I still do.

Waiting

Today we saw Darcy’s therapist for the first time in over a month. She has been doing so well, so we had agreed on spacing out her appointments a bit. There is a great deal of solace in the fact that we found ‘the one,’ this perfect woman who has spent so many hours with Darcy and I bonding over our shared loss. She has saved me in so many ways and truly helped me to become a more patient mother.

We often color, or play with legos, cars or a dollhouse. In the beginning, Darcy would play act with cars and create accidents, police, ambulances, everything that her little mind witnessed the day of the accident. Darcy wasn’t there when it happened, a reason for which I am eternally grateful. She came home to the aftermath, the helicopters, police tape and onlookers, she saw my car across the street and she knew that something really bad had happened.

We’ve worked hard with Darcy to help her identify her emotions instead of acting out and she has made incredible strides in opening up to her therapist and my husband and I. It’s hard to watch your child go through the loss of a sibling at any age, but at 5, death is still a foreign concept. She acts so mature sometimes, that I forget that she really still doesn’t understand.

Her therapist asked her today if she was scared that something would happen to me or Parker. Unsurprisingly, her answer was yes. She knows that I lost my mom to breast cancer and often asks me when I’m going to die, or if I’m going to get sick. She doesn’t get it and I’m mad that she has to.

Her therapist asked her tonight if she wonders if Parker and I will have more children. At first I was a little taken aback by this question because I really didn’t want to discuss my family plans with my 5 year old. What she said, shocked me. She wanted to know if I was going to have another little boy. She said we would call him Benny, Captain Crazy. She thought that we could make another Bennett. It broke my heart to explain to her that there was only 1 Benny. I told her that there was only 1 Darcy too, but she had just met a woman named Darcy on the walk, so naturally she corrected me. I tried to explain that every child is different, they look different and have different personalities. I reminded her of how different she and Benny were. I think she got it, but I don’t know. The fact that she thought that we could have ‘another Benny’ surprised me.

I love that she believes in magic and fairies and santa clause. I love her innocence. I wish we could all hold on to those beliefs as adults. At the same time, I wish she were older, it’s such a fine line to walk. I wish I could talk to her like an adult and know that she understands what I’m saying. I wish she were old enough to read this blog, I honestly cannot wait until she is. I want her to understand so badly. She’s my best friend, now I just have to wait for her to grow up.

I’ll be here future Darcy, waiting…

Some Perspective

So, as I’ve said before, my heart wasn’t really in the walk this year. Believe me, I’m not proud to admit it, but it is what it is. All of a sudden losing my mom at the age of 49 didn’t seem like the greatest tragedy anymore.

Sure, I trained, but I think more to get me up and out of the house. It gave me something to focus on other than the tragedy that has become my life. Sure I raised the money (and then some) because we are blessed to have some amazing people in our lives. I couldn’t believe that after all of the support that we received following the accident, people still donated to my 3 Day walk.

So, if I’m being honest, I wasn’t really excited to walk. It felt weird to be there to try to raise money for cancer when someone can die in a car accident just as easily and there’s not a thing that you can do. I was very conflicted this year. How do I honor my mother and grieve my son simultaneously?

Opening Ceremonies hurt. I stood there amongst survivors and those who had lost their mothers just like me and I felt horrible. How can I grieve for a woman who lived 49 years (which now seems long to me, amazing what a little perspective can do), when my son didn’t even get 18 months? How can I even begin to wrap my head around it? I really wanted to leave. I was ready to admit defeat and walk away. It no longer felt like my battle. There was so much sadness and all that I could feel was everything that I had lost.

What kept me there was all of those donations, all of those people that I felt that I had made a promise to. So I walked. Day 1 was rough to say the least. I blame it on the fact that Tara is now 30 and this has caused both of our bodies to age. Truthfully, I think we both had a shit year and probably weren’t ready to deal with the walk not only physically, but mentally, but we forged on.

I didn’t expect Bennett to be there, I should know better by now. I had noticed as we were walking several different banners with sunflowers. I smiled and took it for the sign it was. As we were crossing the street, I went to look closer and stopped dead in my tracks as I noticed the dates on the banner-the day he was born and the day he died. Tara had to yell at me to hurry up and take the picture because the light had changed and I was still in the middle of the intersection gaping at what was in front of me.

Mind blown, once again, but it was yet another sign from the little guy that I was where I was supposed to be. We then passed by the Bennett Arboretum. Sign number 2. Our tent number, just happened to be B-88, there was that number again, this time preceded by the letter B. Never mind all of the coke cans that read ‘Mom’ or the fact that the only song that I heard at the last pit stop on Day 3 was ‘Carry on.’

We walked through crowds of people, all cheering us on. People were on the side of the road handing out tylenol, water, soda, jello shots (!), you name it. They came out in droves to support us walkers. I’ve walked Boston for 9 years and I have never seen anything like the community support that showed up in Michigan (sorry Boston!). The crew was phenomenal and so encouraging. It made those first 22 miles bearable.

When we made it camp that first night I felt relieved. I was beginning to remember the joy that comes out of being involved in an event like the 3 Day. We sat down to dinner and watched the different entertainment that was on the stage. Up walked a woman that was 32 and stage IV – perspective. She was diagnosed at the age of 29 with Metastatic Breast Cancer – perspective. She was emotional, she was scared, she was inspiring. The light bulb dinged and suddenly I remembered why. I remembered that I did this walk to heal from my mother’s death, but it has become so much more to me. I remembered that this wasn’t about me or my son, but something so much bigger (that was a hard pill to swallow, not sure how long it will last). I remembered why I walk, why this is so important to me. I had to look outside my own grief, which wasn’t easy once it’s become a part of your every day life.

Then I looked at my life. What if I had been diagnosed at 29? How would Darcy’s life be? Would there even be a Benny? For the first time in a longtime, I actually felt grateful – perspective. Now I’m not going to tell you that Days 2 & 3 were a breeze, but remembering why I was there, feeling it in my bones that I was 100%, absolutely where I needed to be made it easier to carry on.

It was a good weekend. It was a good reminder to me that there is life outside of my grief. Sometimes we’re just so blinded by it, that we can’t see. It was a glimpse. Now that I am home again and on the other side, it sucks. But I will hold onto everything that that 32 year old woman said to remind me why I walk. In this instance, I was not powerless or helpless. I could fight back, I could walk. I don’t know yet how to ‘fight back’ after what happened with Benny, I’m not sure if I ever will. I think that’s going to be one of my biggest obstacles, feeling powerless. At least for one weekend, I had a little perspective, a little breather from the endless grief. Thank you 3 Day. Thank you mom and Benny for keeping us moving.

Sometimes…

About 8 years ago, my 3 Day walking team and I put out a cookbook. I was going through it tonight looking for something and found these words that I wrote,

“sometimes people just pass through our lives and only stay long enough to make a difference.”

How very true indeed. When I think about all of the lessons that my children have taught me about life and love I feel lucky. They changed me, they changed my marriage and they made us a family. They made my life whole.

So my life is a little bit more like a donut now, there’s a big piece missing from the center, my munchkin is gone. I never thought that I would have a boy, it seemed such a foreign idea to me because I had two sisters. It hurts to remember all of the laughter that that little boy brought into my life. How coy he was when he smiled and how ridiculous he was when he tantrumed (it really was quite funny). He made me so happy and balanced out his sister. They were yin and yang. Maybe it was because they were so young yet, but they rarely fought. Most of the time Benny had Darcy in stitches, laughing hysterically over some antic that he had pulled. He was a performer and comedian and could have done so many amazing things with his life.

Today I was cleaning in my room and Darcy was behind me every time I turned around. I finally told her she needs to learn to play by herself for a little bit. I was picking something up off the floor when she said to me, ‘it’s because I don’t have a brother anymore to play with.’ It was a good thing that I was bent over so that she couldn’t see my face. How does one even respond to that? It was like someone physically stabbed me, it hurt so much. I wish I can make it all better, but I can’t.

Benny taught me happiness and laughter. Everything could be funny with him around. He taught me about patience like never before. He taught me about having a little boy and loving a son. Mostly he taught me life is short, there are no guarantees, how presumptuous of us to assume that there is a tomorrow. His life changed me, his death changed me. I miss the laughter and smiles. I miss Darcy’s playmate.