March is Colon Cancer Awareness month. As a colon cancer survivor, I’ve always wanted to have something special to say during this time. Mainly, because if you read anything about getting a colonoscopy, it will say the following,

– 50 years or older

– overweight

-heavy drinker or smoker

I did not check any of these boxes, and yet, a few symptoms that could have signaled Crohn’s disease led to me having a colonoscopy. And so my story goes… 33 years old, Stage 3B colon cancer.

Now, if you were asked the many things you would want to have in life, I’m sure cancer is not one of them. What I have learned is we do not get to choose the crosses we bear. We do not get to decide the difficult situations we face.

I’ve met several amazing, strong women over the course of my life, and I’ve been inspired by all of them. Raising children with disabilities, raising children after a divorce, taking care of aging parents, and supporting friends and spouses through life changing experiences. Through these interactions, I’ve come to know that we are all survivors.

I recently had the opportunity to talk to someone about how we handled my cancer diagnosis with our children. They were one and two years old. We did not sit them down and tell them Momma was sick. We just lived, we just survived, we just moved on. And how many people do that, every.single.day. You go, you do, you survive.

For me and my health, I’m good. Had extensive genetic testing done over the summer of 2018 and results were great. And also guide my team of how to treat me if it comes back.

For my Colon Cancer message, I really don’t have one. The main thing I tell people is I had a cancer diagnosis to change my lifestyle. They way I eat, to incorporate exercise into my daily life, and to pay attention to my health. I’m just trying to encourage others to live their best life. And to remind myself to do the same.

© Nicole Szymonik and This Is the Pause Button, 2019. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

I feel so powerless, I know that from now on nothing will be the same.

I feel so powerless, because eventually you won’t know my name.

I feel so powerless, because it just seems so unfair.

I feel so powerless, because it doesn’t matter how much I care.

I feel so powerless, not knowing what will be.

I feel so powerless, because you made me…me.

By Nikki Dust Szymonik

Nikki commentary:

I’m finding out first hand how much Alzheimer’s sucks.

My routine blood work has put my little world into a frenzy this past week. My CEA marker went from 3.4 to 6.1. When I saw the results in my online portal, I knew it was a big deal. My CEA has always been high (ideally it would be under 2.5) but they just want it steady. And not to double.

Queue scheduling a PET Scan and bringing cancer to the forefront of my mind and our lives.

Logistically, Scan went well and kids were taken of care of, leaving one less thing for me to worry about. Now we wait.

Nikki commentary:

When at the cancer center, I’m always reminded how lucky I am to be surrounded by youth in my daily life. Kids, mothers, teachers, soccer coaches and baseball dads. The cancer center is a somber place with clear evidence of a illness.

While I was there yesterday, I just had this screaming in my head, you don’t belong here. And this morning in my pure barre exercise class, with the effort and pain endured to make me physically stronger, my brain screamed, you belong here!!

I’ve taken it upon myself to introduce my workout buddy to new music. Thankfully, due to the influence of my husband and in laws, Jason and Abigail, there’s a lot of Indie rock and chill music, think LCD soundsystem, real estate, Beirut, spoon, but also introducing some oldies but goodies. Radiohead!! I mean… so for today’s post. Take a listen to Creep by Radiohead.

© Nicole Szymonik and This Is the Pause Button, 2018. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

News Alert: I’m old.

The crazy thing is, it happened so fast, so fast that I didn’t see it coming. In fact, I had to be informed of the fact. So here’s what happened. I’m at my 5:45 am exercise class, and chit chatting with another girl. To whom I express “I hate being cold!” And she responded “ahhh…you hate being old! It’s ok. Once class starts you’ll totally do better then me.” So I clarified, “i hate being cold.”

Of course I informed my husband when I got home and he said, “yeah, we’re old!”

And this is when it all sunk in. Well, crap. I honestly think I’ve been too busy with the kids, with trying to prevent cancer from returning, and treating every other random ailment I seem to have, that I didn’t even realize it was happening. I knew I was fighting to live but I forgot about getting old.

I’ve felt old before…chemo, chemo made me feel old. When I’m pregnant, no, that just makes me feel tired. Regardless, It’s funny how once you are enlightened to this reality, you start noticing how young other people are and sadly enough, how old your loved ones are. My mom is 76. And she’s always been this lively, funny, good time mom. And now, I’m aware, she’s 76. She’s old. And I’m not ready for all the things that come with that…

And my Dad. It’s been almost 18 years since his death. That means he has been gone as long as he was here for my lifetime. I was 18 when he died.

Here’s the thing with being old. I’m ok with it. I have dance parties in the kitchen with my family. My daughter thinks I’m a good singer, my 20 month old says “love you” and slobbers on my face, and my 5 yr old tells me “I love you more than you love me!”

Nikki commentary:

I recently read something along the lines of “you live every single day. You only die once.” It’s true. Every day you get a chance to rock it, to own it and to grow old! Enjoy it.

© Nicole Szymonik and This Is the Pause Button, 2018. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

My December 11 Scan was clear!! Oh happy days!!! I was standing in my laundry room when my oncologist called to say the scan is clear and my CEA came down 1 point. It’s still high but it came down. Which is good. I hung up the phone and I cried. It was a happy, sad, overwhelmed with emotions cry.

The 3 year cancer free mark has been a goal since I was diagnosed. And it is approaching in the upcoming weeks. 3 years…

Nikki commentary: next scan is June 11. Since cancer cells have to divide to show up on a scan, there’s a chance it’s missing something. But I like the aggressive tracking approach!! I’m getting better at not thinking about cancer every day. For example, I’m pulling out of my driveway to drive to my workout class, and this little voice says, it’s going to come back. And that really pissed me off. So, I’m in charge of that voice. And on my drive home, I said, you’ve got this!

© Nicole Szymonik and This Is the Pause Button, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

Tomorrow is a big day. It’s my 3 year CT Scan to check for cancer in my abdomen, pelvis and chest. And it’s going to be a big deal when they tell me it’s clear, because almost 3 years ago, they said “it’s most likely to come back in the first 3 years.” So, here we are. At a huge milestone in my 5 year to forever cancer-free life.

I’ve been thinking a lot about how my life has changed since I was diagnosed. Not just from the state I live, since we moved a couple times!! But, in other ways. 1) logistics: I feel like I go to the dr all-the-time. And I feel blessed because of that. Bloodwork, labs, follow-ups, monitoring, questioning, wondering….

2) me: The thing I dislike most about the diagnosis, is how it consumes me. I allow it to control my thoughts, my fears. And I’m working on that…and trying to turn the focus to my health, not just to be healthy but to live healthy. Hell, what does health even mean?

3) my support system: they have no other choice, but to be along for the ride. I’m very open with my health and my anger towards cancer, so everyone is along for the journey as we wait for results. This aspect has formed friendships and made my friends and family even closer.

So, here we go, let’s do this. IVs and machines and radiation going in…

Nikkk commentary: me and Brittany telling cancer to fuck off. What other salute did you think it would be? I mean, this is a cancer blog.

© Nicole Szymonik and This Is the Pause Button, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

Few people know that my tears still burn my eyes. If I power through, it stops. Or the immediate burns makes me stop. I also have neuropathy in my arms and upper back on occasion. Some Drs will say, no way is it from chemo. And agree or disagree, what else could it be from?

I’m also embarrassed to say I have gingivitis. After doing more for my mouth over the last 6 months, including a rinse that embarrassingly stained my teeth, I still have gingivitis! Apparently, chemo permanently kills something in the saliva, that helps your mouth fight bacteria, etc. I had heard of tooth loss from chemo, but didn’t think much of it, until now. I don’t think I’m going to lose any teeth, just more frequent cleanings (thank goodness for no more staining!) and with all things that come with me, very expensive dental bills, even with insurance!!

I guess since the cancer hasn’t returned , I should be thanking chemo to continue to give me cancer free cells. And just take the side effects as a reminder what was…what could be.

© Nicole Szymonik and This Is the Pause Button, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

I have a vivid memory of holding my Dad’s hands and thinking, we have the same hands. The same long fingers. He also gave me his super long toes. Which would bring some ridicule through my younger years. But I remember him telling me, if your second toes longer than your first toe, it means you’re going to be rich!

Now I know he told me this just to make light of a situation I had no control over. But I love that I have this memory.

My daughter has my hands and feet. Long fingers and long toes. And my youngest has my feet. I love knowing that this is not just something they got from me, but from my Dad as well. And I tell my daughter that we have the same toes and they are the best! And when she’s gets older and hates her long toes, I’ll tell her how rich she’ll be rich some day!!

Nikki commentary: my CEA came down 1 point. It’s a 3.9, down from 4.8. I’ll have a CT scan in December 11!

While I’m relieved the number went down, maybe it was a blessing it went up. To remind me to enjoy this life. I convinced Scott that we needed to go to the beach this Fall because what if a year from now, I’m sick?! We need to live now. We need to enjoy life now.

And right now, I’d give anything to hold my Dad’s hands again. I’ve been missing him lately. Telling my kids about him lately. They have pictures up of him in their rooms. They know he was silly, funny, loving. He was the best!!

© Nicole Szymonik and This Is the Pause Button, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

Look, Mom!! I did it and didn’t get hurt!

I’m in the place of parenting where I’m trying to let my kids do things on their own but while still teaching them the dangers that can occur. And with millions of parenting articles out there, it’s hard to think I’m even close to doing anything right.

But when my little girl said this to me, I at least had the boost of confidence to know they are listening.

I had my 6 month appt with my oncologist last Tuesday. And it’s amazing how humbling of an experience it was, even for someone who has been in the system for over 2 years now. I’m blessed to surround myself with youth everyday. With young, strong, children and the sounds of giggling toddlers. And this was quite the opposite. And I had to discus my health with my oncologist.

The big number we are tracking is my CEA. Baseline in Indy is 2.5. In February 2017 mine was 3.2 and this past week it was 4.8.

It’s ok if it’s high, we just want it to be stable.

Since this is a cancer blog, you can say it with me, Fuck. Well, those are my thoughts. A soul crushing week it has been. I can’t even begin to describe how this news has changed me and unfortunately worn over to my husband.

So it doesn’t mean that I have cancer. But it means we take another blood draw in 1 month and if numbers are still high we do a CT scan soon (current one is scheduled for Dec 2017).

But as my oncologist pointed out, scans have their limits and “it” could be too small that we don’t see it. Comforting.

It could also be something else. My dr noticed my weight loss and asked if I was doing anything. I eat little red meat, very little meat, minimum dairy, basically eat fruits and vegetables. And I’m running two mornings a week. So he wasn’t concerned. But we pulled my Thyroid. My THS and T4 are fine and my T3 was slightly elevated (.4 higher). So we are hoping that’s increasing my CEA. We will rerun my thyroid labs in 3 months.

Nikki commentary:

I wasn’t going to post this because I didn’t tell my mom about the CEA going up.

But didn’t think she would find out from this post.

The weight of worry. When you have kids the worry never stops. I think the same goes for being told you have cancer. You always worry someone’s going to tell you the exact same thing, again.

© Nicole Szymonik and This Is the Pause Button, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.

Little kids and bedtime. I have a love-hate relationship with bedtime. I love the end of the day snuggles, giggles, and "I love you". I hate the getting out of bed, I need a drink of water with ice in it (seriously, my kids are ice snobs!) and the dragging on of bedtime when I want 20 minutes to myself before going to bed.

My 4 yr old is in this stage of figuring out all things but at bedtime it is time. I explain I will lay with him for 5 minutes. So we discuss how long is a minute, hour, day and so on. But then he spreads his arms out and asks, "is a minute this big?"

I explain that you can't measure time like that and really even with our scientific ways of days, weeks, months and years, it's hard to measure time.

To which he just says, "well, I want you to lay with me for one more minute, and one more minute after that."

It's hard to resist, especially the nights he says "I want you to lay with me forever."

Nikki commentary:

The crazy idea is time. No one day is created equal. Some days feel longer than others. Are harder than others.

Health wise, I'm happy to report that I have established care with an amazing Gastroenterologist. On May 11, 2017, I had a colonoscopy and an upper endoscopy that both came back clear. He was pleased with everything and I'm scheduled to see him again in May 2018.

It was an interesting appointment with him. Since he is looking at my health history for the first time, I got some new insight on my type of cancer. Basically, he explained that even though I tested negative for Lynch Syndrome, that he was taking the precautions as if I had it.

Where my tumor was located (upper colon) is rare with my age. Normally, it would have been lower or rectal. And when testing the make up of my tumor it was 5/5 unstable. For LS, if it's 2/5 unstable, it points to having it.

Regardless of those details, I feel good. And I'm trying to enjoy the craziness and sometimes overwhelming moments in one more minute. Even when it consist of 60 minute bedtime routines!

© Nicole Szymonik and This Is the Pause Button, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicole Szymonik and This Is The Pause Button with appropriate and specific direction to the original content.