Week One. It's not fair.

I love to write. But I hate why I'm writing. 

What follows is the running journal I've been keeping since my Mom was given a devastating diagnosis on September 23, 2016. I plan to use the blog as a platform to share information but mostly to share our journey. 

September 23, 2016

It's Friday. I live for Fridays. We just moved. Three kids, a dog. Husband too.  It wasn't a far move but it might as well be Africa. Everything is new. New people, new streets, new grocery store, new gym, new school, new life. And I left behind my people. MY people. So I live for Fridays because my person, my lobster, my main man is home from work for a couple solid days. There's another set of hands, more adult conversation, I live for Fridays.

Started off like any other. The book fair at the new school is next week. I volunteered to set up, do some heavy lifting, get to know some other moms. Scholastic Books has it down. They ship these giant containers on wheels and you open them up and voila! Books. Organized by type and reading level and everything. It's impressive. So were the number of cooks in the kitchen. Lots of discussion on where the value packed books should go and where the kindergartners would start and finish their shopping. Kept my head down, unloaded boxes. Phone rang. 

My mom had been having stomach pain for only a few days and the doctor sent her for a CT of her gallbladder. Likely the cause, take it out, stop eating fatty foods. Carry on. Wrong. 

Cancer. Fucking cancer. 

Not just cancer. Stage four peritoneal cancer. Stage four. It sounds like a bad dream. Like a nightmare. A nightmare that happens to other people. Not to us. Not to our family. Nope. She's 67. She's got decades left. She's got grand-kids. And stuff she wants to learn and see and do. And Lord knows she's got a vote to cast in November. 

And my dad. My God, my dad. I can't even go there. 

Your brain goes to horrible places when you hear words like cancer, and stage four and large spots and biopsy and chemotherapy. Places you don't want to go, but you can't help it. Or I can't. It's hard to find your way back from those places. But we have to. Because fuck you cancer, that's why. Because we are fighters and we are way meaner than any damn disease. But this particular Friday, finding the fight is hard. 

Shock is a strange sensation. It's somewhere between a dream and reality. You float. Outside yourself, outside your life. Hovering above what you know to be true and what you want to be false. Not wanting to come down. Not wanting to wake up. 

The rest of Friday is a blur. Hopped on a treadmill, cried in front of a 25 year old trainer who should never have asked if I was OK. He knows better now. Sat in a few parking lots and cried. Cried on Dan's shoulder when he got home. I could use some cucumber slices at this point. 

"Corey, I've got cancer" You can't unhear things. And that's the second time I've heard those words. 

The first time, almost 9 years ago. Breast cancer. I was newly pregnant with our first baby. And my mom had cancer. You don't know the pain and the fear and the horrible things that come with cancer until you go with your Mom to have her head shaved. Or until you help her out of a bathtub because she physically can't do it. Chemo is poison. Your body is being poisoned. And damn, did it kick her ass. But in the end, she kicked cancer's ass. Got her hair back. Her spirit back. Her life back. Until Friday came. 

It's like being punched in the gut. Or hit by a bus, or what I imagine being hit by a bus might feel like. Everything is numb. Cancer is back. And it's my mom. Not someone else's mom. Not a mom of a girl who I know from a neighbor down the street. MY MOM. MY FAMILY. MY LIFE. And it's bad. Not that there's a 'good' cancer. But if there was a 'good cancer' this one wouldn't be it. 

I'm not sure when the shock turns to anger or to fear or whatever it turns into. Now we wait, until next Friday. I used to live for Fridays. Next Friday we get a plan. A treatment plan. But for seven days, that fucking cancer gets to continue attacking my mom. I think in these situations it's socially acceptable to stomp your feet and pound your fists and scream, 'it's not fair!' 'why me?!?'. And likely the Universe looks you square in the eye and says 'why NOT you.'.

September 24, 2016

I kept hoping I would wake up this morning and it would have been a dream. A dream about the worst day of our lives. It wasn't. It's real. So fucking real. And raw. And scary.

24 hours ago life was normal. So normal. Everything that was happening then seems so trivial now. None of it matters. None of it. It's like normal life stopped and a new life began. A new scary life with no plan direction, without any insight into what may happen next. 

We talk a lot about things happening for a reason. My Mom says it all the time. Things happen for a reason and what sucks is that you don't know the reason at the time things are happening. The reason my mom is sick again is because cancer sucks. That's the only reason for that. She’s' a wonderful person who loves ferociously and makes the world a better place. She certainly doesn't deserve this. Cancer sucks. That's the reason she has cancer AGAIN. 

But, I had a moment of clarity driving between a flag football game for my 8 year old  and an informational meeting about Girl Scouts for my 5 year old (because that new life still includes the old life... only with less zest and less focus). 

This is why we are here. I didn't want to move. I made no secret about it. I loved our life in Tampa. It was perfect. We lived in a wonderful neighborhood and had this amazing village. People who would do anything to help us or our kids. And I have a tribe there. These women who get me. Who know me. Who love me for me. Men don't need that. I mean, they need friends but they don't need a tribe. Women need a tribe. A squad. People. I didn't want to leave that. It's selfish and silly and I know that. I know that as long as my family is together that we will be just fine. And we are fine. And let me be clear, this was an opportunity of a lifetime for my best friend. For his career. This move was the right thing but, that didn't make it much easier. Adjusting has been hard. I'm not adjusted if we're being honest. But, 24 hours ago, all of that nonsense stopped mattering. And now I know why the Universe brought us here. 

This is why we are here.

My parents are leaving Georgia this afternoon to drive down to South Florida where they have a home near the beach. To be treated here. At the Cleveland Clinic where they have a special treatment for this stupid, rare, aggressive, 'silent' cancer. Where they are close to us. Where we can help. And we can bring children's laughter during what is going to be a really shitty, really hard time for everyone.  We are supposed to be right here. Right now. If that's not a giant smack in the face from the Universe to tell me to get my shit together and stop pouting, I don't know what is. 

September 25, 2016

My parents are coming today. Their house is an hour from ours. We took some food and flowers and wine and chocolate chip cookies over there (the cookies are in the freezer because that’s where my Dad will look for them) because I have to do SOMETHING. And if I can’t cut her open and suck this shit out myself I can buy flowers and wine.

I hadn’t told the kids until today. I suggested to Dan that I needed to explain my random, nearly constant crying to which he responded ‘not much different than the last few months’ (see above about being sad we left Tampa). Point taken.

I mostly told them because I want to see my parents and I know there will be big hugs and tears and I don’t want to freak the kids out. How do you tell your kids? We have three. One is 16 months and if it doesn’t involve Elmo or climbing something she doesn’t really care or know the difference. The other two are almost 6 and 8. They know what cancer is. And they know what can happen. How do you look your children in the eyes and tell them that someone they love from their toes to the top of their heads has cancer and is going to get very sick before she gets better?  But she’s going to get better. She has to get better.

I kept it simple. Kids don’t need an overload of information. They stop processing what you’re saying if you elaborate or use big words or try to give some anecdotes. ‘Guys, we need to talk. Bubbles and Doobie are coming today. They’re in town early because Bubbles is sick and the best doctors to make her better are here.”  They asked if they could hug her and kiss her and if she’s contagious. Then they asked what we were having for lunch.

September 25, 2016

I saw my parents tonight. Took my circus with me. Thank God for the circus and wanting to throw the football and play War and help organize shoes in the closet. Thank God for children. They make it normal. They bring light and levity. We need light and levity right now. You can cry with the kids around and have brief discussions but they’re usually interrupted with an offer to show a cool dance move or a question about why Doobie is younger than Bubbles but Doobie is taller than Bubbles. And let’s not forget the 16 month old fireball whose goal in life is to destroy everything in her path, leaving no decorative shell or picture frame unturned. They keep you from dwelling too long.

You know what’s gut wrenching? What will actually make your whole body ache in pain? Hugging your Mom for the first time since she told you she has cancer and her saying “I can’t imagine never doing this again.” It’s like someone took our happy life, our easy life and said ‘Here. Here’s some awful, horrific news and it’s gonna affect everyone, but most of all your Mom is going to go through hell. Good luck.’ There’s no manual for this. And things are broken.

My Dad is broken. I can see it in his eyes. I feel it. He is broken. His heart, his soul, all of him is shattered. My Dad is gentle, kind, quiet, and honest, everyone likes my Dad. And he’s the perfect balance to my Mom’s fire and passion and crazy (She’s a little crazy. We all are. Keeps it interesting.) They are opposites and it works brilliantly. He is terrified. I’m terrified for him. When your Dad says ‘I don’t’ know what I’ll do if I lose her’ what do you say? How do you respond? You cry.  

This week will bring us a lot of answers, we hope. She’s going to be seen by the finest in the field. There are tests this week that will tell us how much cancer there is, where it is, what we can do to tackle it. All we hope for is a plan. A plan to tackle it. And we hope that plan has a rainbow and butterflies and boxed wine and a fucking chocolate fountain at the end.

September 26, 2016

The unknown sucks. Everyone knows that. It’s scary. In this case it’s terrifying. There are scenarios and no one knows which it’s going to be.

So one minute, I’m as positive as I can be, I’m ‘Best Case Scenario” girl. These cancer spots originated from cancer cells left in her body after the breast cancer. They were dormant, they just woke up and sent signs right away that something was up. There’s this horribly invasive, scary, long surgery with a wicked recovery BUT she can be cured. This is the best case we are looking at right now. We are looking at an 18 hour surgery where they remove ALL of her organs and basically scrub them, then they put chemo INTO her body cavity and they heat it up to kill the rest of the cancer. Then there’s 4 weeks in the hospital and hopefully no chemo afterwards. That’s BEST case. She goes through hell and she lives.

The next minute is dark and scary and painful. There’s the potential that these spots originated somewhere else… pancreas (God please no), ovaries (again, please no), colon (please, please no).  So if it originated somewhere else and then showed up all the other places, then we have an organ with cancer and it’s sharing. Spreading. Attacking. And what if it’s been attacking for too long? What if it’s just too much? What if they can’t? What then? And that’s where I try to distract myself. Where I busy myself with someone or something.

There’s a third scenario. This one might be the scariest. What if it’s between options one and two? What if they say, “yes, we can do the surgery, but we aren’t sure it will work.” So what if the odds are less than 50%? I know my Mom. I know her well. And I know how she feels about the Right to Die. I know that she won’t put her body through hell for a small chance. So this means that she makes a choice. Her choice. A choice no one should ever have to make.

September 27, 2016

My parents slept last night. Something so simple gives me peace today. Five days ago whether they slept or not wasn’t a concern of mine. They could take care of themselves.

It seems so small, so trivial. But sleep is a reset button. It’s how we recharge, reenergize. If you don’t sleep, functioning and firing on all cylinders is so much harder. They need energy to fight, to function, to cope, to just get through each day right now. So today is a good day, because they slept. Knowing they’re doing ok today, I have some emotional stability. Some. Not much. But some. I’ve only cried a couple of times, no major breakdowns which is an improvement over the last four days. I know we should all be taking this one day at a time. But how do you do that? How do you have the knowledge we have and just breathe and take each day as it comes? How do you do that knowing that cancer is eating your Mom alive? I haven’t figured it out yet. Not sure I will.

So today’s victory is they slept. Tomorrow she sees the doctor. Tomorrow we get information, maybe answers. Praying for ‘positive’ ones. Would love to hear words like ‘curable’ or ‘bad CT scan’ or ‘she’s going to be alright’. But all signs don’t point in that direction.

September 28, 2016

Six months. Maybe six months. Six fucking months.

None of the news was good today. None of it. In fact, it was horrible. That awful surgery where they rip out your organs and fill you with poison? No one even mentioned it. They can’t save her. They can’t save my Mom. I can’t believe I’m even typing those words.

There are possibilities, all of them bad. It’s either stomach or colon or breast or ovarian cancer. Each one just as bad as the last. So now they do further tests not to determine treatment but to determine quality of life. To determine if she’ll be in pain. So I’ve gone from praying that my Mom doesn’t have cancer to praying that the time she has left will be good time, excellent time, fabulous time. What the fuck. How does this even happen?

My Mom got 20 years taken off of her life today. 20 years. And I’m pretty sure my Dad feels the same about his.

September 29, 2016

  

I burnt my tongue on flavor free hospital chicken noodle soup today. That’s what Mom always made when we were sick. Chicken noodle soup. Usually Liptons, the powdered kind, in a coffee cup so you can drink it. Nobody wants to be sick and chew on carrots or celery anyway. Chicken noodle soup and cinnamon toast. Mom’s the sick one and Dad and I were the ones choking down bad chicken noodle soup.

When I pulled onto the campus of the Cleveland Clinic this morning there was a chain link fence along the side of the entry road hiding dirt and equipment and construction. A banner hung on the fence said something about improving treatment for the ‘“the sickest of the sick.” You know in the movies when they shoot from the perspective of the character walking through a tunnel, everything moves by them in a blur, there’s a din you can’t quite make out? That’s what it felt like walking into the place where they take care of the ‘sickest of the sick’, ie: my Mom.

She had an EKG, two ultrasounds, a PET scan and an MRI today. In between tests we sat and cried. Laughed a little. Stared mindlessly at our phones searching for the answers or the right thing to say or anything to say other than FUCK or THIS SUCKS. Couldn’t find those words. Still can’t. There’s nothing you can say. There’s nothing anyone can say or do. No amount of money that will make this go away. There’s no magic pill. Salt of the dead sea or an Indian witch doctor can’t help. We would pay the money or the pill or go to the dead sea or move in with the witch doctor.

On Tuesday we will know more. We will know what her quality of life will be for what’s left of her life. I can’t believe this is reality. None of us can. She looks the same. She looks exactly the same as she did 8 days ago. Two weeks ago. Two months ago. She looks THE SAME. How can she be dying? It doesn’t make sense. People who are dying look like they’re dying. You can’t see the fire of their soul in their eyes. You can’t hear wit and brilliance roll off of their tongues. You can’t hold their hands or squeeze them tightly. They’re fragile. Weak. She doesn’t look weak. In fact they told her today that her heart is very strong and healthy. Great. Doesn’t help us. What would help is if someone would cure cancer. Today.