Friday, August 14

Knowledge is power.  After an excruciating silent 26 hours from the ultrasound,I finally heard from the nurse to say the ultrasound of my liver came back normal.  I just happened to be in the lobby of the dr office, waiting to meet with a dr about Lynch Syndrome testing. 

I was so relieved and overwhelmed, I cried to a different nurse taking my vitals and getting me checked in.  I think she empathized with me…

After sitting in a quiet dr office for 30 mins, I finally turned on my music and read Vanity Fair. Nothing prepares you for these appts, especially when you don’t know what’s in store. basically, if I have lynch syndrome, the chances of getting other cancers are very high.  We find out in 3-4 weeks. But so far, all signs (my tumor, my age, family history) all points to it being positive.  There was a lot that happened at this appt and I’m not ready to write about it…will share more soon or when we know the results.

Nikki commentary: The kids are down for their nap. I usually rest on the couch but today I’m crawling into bed. I’m tired. I’m exhausted. And feeling overwhelmed with the fight. 

Monday, August 10

Round 9: Erin and my mom came to town to watch the kids and join me to my 9th treatment. Everything was running smooth, too smooth, from registration to labs.  No back ups, no long waits. We should have known there was bad news in store. 

The entire cancer center smelled funny.  So, once we got to labs and she flushed my port, it was time to start throwing up.  And to add insult to injury, I got a bloody nose while vomiting.  The nurse was really sweet and Erin was a rock star.  And once we finished up, we headed to my dr. Appt.

Lab results are in: platelets are at 74 and my liver levels are high.  Weight was 123.  He asked about my weight gain. To which I responded, I have an appetite and I’m not throwing up every day.  He asked, “why do you think that is?” Uh..because you are putting less chemo in me…

Dr. casually mentions that he wants an ultrasound to see what is going on. So, off to the infusion room we go. 

The infusion is supposed to last about 3 hours, and ends up taking 4 and 1/2.  But I didn’t get sick and after a nap, Erin and I watched a movie. 

   
 Tuesday: Steve and Rose stop by to take the kids to the park so I can rest.  But I can’t get this damn idea out of my head that there is something more to my liver levels.  I have been good about not looking online at cancer information.  Because, I have learned from pregnancies, every situation is different and there is some scary stuff out there. 

But I looked anyways.  Turns out that the liver levels could be high from chemo or it could be that cancer has spread to the liver.  Well FUCK! So I call my dr. Immediately and leave a message.  Call Scott and he is says he is coming home over lunch. 

And I called Erin to see what she “heard” at the appt and to tell her I was freaking out. So we get Holly in the loop and start trying to get me calmed down (and everyone else worked up!)

Nurse calls me back and does confirm my that my internet search is correct in that it could be the cancer is spreading.  Well FUCK.

So much for resting while the kids are at the park. I cleaned out Cecilias closets and scrubbed the kitchen walls!  I call Angie and we decide not to tell mom (to avoid worry) and we start praying.

That afternoon, I call to schedule the ultrasound for Thursday morning. In the meantime, Scott cancels a business trip that he is supposed to go on Wednesday and we fall back into waiting. 

Wednesday, off to the botantical gardens we go.  Steve joined me to help with the kids.  I have decided if there is cancer spreading through my body, I’m not going to let chemo leave me on a couch.  It was a beautiful morning and the gardens are my favorite place in the city of St. Louis.  It really is a little peace on earth there. 

Headed home for naps and Scott came home for lunch. And to add to the worry, Cecilia woke up from her nap with a fever and started throwing up, so it was a blessing Scott could leave work a little early to come home and help with the kids.

   
 
© Nicole Szymonik and This Is the Pause Button, 2015. 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.

Over the past few weeks, Jeffrey has been wanting to be rocked at bedtime. I love rocking my babies. There is such a short time period (outside of being sick) that children will be still and just lay on your shoulder and let you rock them. There is just a peacefulness, an innocence, a feeling of, I wouldn’t be anywhere else in the world. 

In these moments, I feel like I could sit in their dark, quiet room, and rock them all night.  It reminds me of a weekend around Jeffrey’s first birthday, when he decided he wouldn’t sleep unless he was held. You do the slow the rock to the stop. Ok. They are still asleep.  The slow walk to the crib.  Ok, we are almost there.  And then the gentle lay down, almost in the clear!  Oh the cries!  Ok. I’ll hold you all night!

And Cecilia, Thanksgiving 2014.  One week, from effingham to Chicago, for our Midwest holiday tour.  Wouldn’t sleep unless Scott and I held her.  Oh, and we had Jeffrey sleeping in between us most of the time. I remember Cecilia just screaming! And feeling so helpless of how to make it better.  So, once we did get her calmed down.  We held her. 

Parenting is like that.  Feeling helpless.  Giving eveything you have and hoping it is enough to raise happy, respectable, human beings. And when you feel helpless, you do all you can do to make it better. Easier for them. 

And at the same time, parenting is the most empowering feeling. The unconditional love, being blessed to be Jeffrey and Cecilia’s Momma. To get to spend my days entertaining them, caring for them, and giving them my all.  Dreaming about the future. The adventures, the memories, the laughter.  And the many more, endless, sleepless nights.

© Nicole Szymonik and This Is the Pause Button, 2015. 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.

Today I had the honor of attending a 5k race in Effingham, called Fight for the Finish. It was such an amazing event, for so many reasons, but I will focus on two.

The race is in memory of Nick Nosbisch. I didn’t know Nick, but today I had the opportunity to get to know how amazing of a person he was through this event.  Nick was a son, brother, an uncle and a friend. He was a fighter and would be proud to know he continues to inspire and change people’s lives. 

I wrote in a previous blog post that how we feel about death is selfish. And it is. Today, I felt selfish and upset for this amazing family who lost their brother too early in life. And yet, I felt inspired, because they continue to fight for Nick and for others still in the fight. 

The second thing from today was the amount of support and encouragement I felt for my fight. Nick’s sister, Amy, was my niece’s teacher and reached out to my sister, Angie, to see if our family would be interested in being part of the big day. What started off as an email, and no big deal if you are busy, turned out to be a sea of blue. 

 My brothers, sisters, nieces and nephews, and friends from both Effingham and St. Louis were all there to support me and to honor Nick’s memory. They rearranged their schedules, got hotel rooms, and took time out to fight! I can’t even begin to express my gratitude to my support system. You never know how someone is feeling and I can say that no one will ever know how truly humbled I am by the love and support of my family and friends. 

I wasn’t able to walk in the event and I didn’t think it was going to be a big deal. But after all the participants took off, I was sad to be left behind. I think it was a combination of not being in the race and that is how cancer makes you feel.  Everyone is moving on, heading out, living their lives, while you sit in the sidelines and heal or recuperate. 

But at the same time, it was awesome watching everyone cross the finish line. I became fixated on the idea of crossing the finish line. For the runners today, it was a physical challenge on finishing the race.  Some running their first race and others their fastest!

And I got to focus on my own finish line. I know that there is always going to be something off in the distance. After chemo, is the one year check up, and blood work, etc. But I will focus on the battle ahead. It’s a day by day game plan and you have to be flexible to win. 

Nikki commentary: please say an extra prayer for all the families fighting or hurting from this awful disease. It has no rationale or reason. And even brings the greatest fighters to their knees. 

  

   
    
    
              
 
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Round 8, Chair 19. July 27, 2015

I put in my head phones and turn on my music.  It’s not loud enough to drown out the beeping sounds of the chemo machines screaming for attention. The rolling of other patients walking to the bathroom.  Looking weak and tired. 

I lean back and close my eyes. Trying to imagine I am someplace else. Deep breath.  Just relax.  Constant prayers, “God, give me the strength to be brave, the strength to be strong and the strength to move on.”

I can still taste the vomit in my mouth.  I really tried not to throw up.  Anticipatory nausea.  It’s real and it likes me. I do not care for it.

Finally, i have completed more than I have left to finish. Platelets are at 64.  Ouch!  But we are on a mission.  Let’s do this. Going to continue with treatment but at a lower dose. 
  
© Nicole Szymonik and This Is the Pause Button, 2015. 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.

Round 7. Half way done. Unfortunately, I did not go into round 7 thinking half way done.  I went in thinking, WTF, I have to do it all over again?

Tuesday, July 14. “It doesn’t get any easier”

Infusion day: platelets are at 84. (Note, when I started chemo, I had 246,000 platelets. The state minimum for treatment is 100,000. But I’m special, so my minimum is 80,000.)

I have been having terrible stomach cramping, and after an exam, it is most sensitive where I had surgery. It’s hard to believe that surgery was just and yet was already 4 months ago. But all feels ok and if needed, I may have my CT Scan and colonoscopy earlier then March (the 1 year mark from diagnosis.)

As we headed to death’s row, I told Betsy, that I knew I was going to throw up. (I had already been handed a puke bag during labs) and before they even hooked me up, I was vomiting, and crying. Why does this have to be so hard?? Lucky for me, Betsy was there, and as I vomited, I heard her tell the nurse, do not give her any drugs until she can talk for herself.  So, I was able to have a conversation with the nurses. And we did 1/2 mm of adavan and a zofran.  Egh.  I hate throwing up.

And chair 16. How appropriate. I sat in 16 for my first treatment. Little did I know what was ahead.

 
Lyndsay then took over in the companion chair, and we made it through an uneventful rest if the day. 

July 15-17, Wednesday through Friday

I was on my own with the kids Wednesday. And had a sitter Thursday and Friday morning from 9-11am. The kids were actually really good.  Most importantly, they napped and at the same time. I have found as long as I can get a nap in, I don’t feel like complete crap. Overall, general nausea and discomfort. The neuropathy is terrible and getting worse.  First few bites of food, burns the inside of my mouth. Painful!! My hands and feet tingle a lot more often to constant and they cramp really easily. I can tell my feet are starting to dry out,do need to remember to keep lotion on.

Friday night, I rallied!!  Scott, the kids and I walked to a Mexican restaurant in our neighborhood and had dinner.  It was great.  And by great, I mean, just fine, but we hadn’t been to a restaurant as a family for dinner, since late February!!!  The kids were great and the food was good. Water was too cold,but hey, that only bothers people on chemo!

Saturday- Sunday “why does this have to be so hard?

We actually had a nice weekend. Hot, hot, hot, so got out early to play in the water out back. And just had a family day.  As I laid in bed for my nap, Scott was cleaning out his closet. I asked him to switch places with me. I wanted to be productive. But instead, I slept.

Sunday: I’m awake and the house is quiet!! And I feel ok!!!  I went downstairs to make coffee and cleaned the kitchen. I know. Not what everyone would do if they had 30 mins to themselves!  It was amazing.  Floors, countertop. The bar is set at running the dishwasher and have the sink empty at night. 

Took my pills, feel like crap. Nothing some peppermint gum can’t handle.  And off to mass we go! Scott asks if we should adopt a family that the missionary spoke about. That’s why I love him. And he buys me icecream from the store.  Which, now, I do have to suffer through a bit, the further I get out from infusion, I can handle colder things.  But it does make my lips and tongue numb.

I’m getting down in the dumps. I’m sick of feeling sick. People with cancer are rock stars!  And the people who support them are saints.

Monday, last day of pills and 6 days off!!

I finally feel like, ok, I can do this. 5 is less than 6.  I have completed more than I have to go. I will still be throwing up next Monday. But at least we are getting closer.

Nikki commentary: I tried to take an athletic, competitive mindset to this round. Before taking my pills, act like I was about to take the dance floor.  So to my Bellettes out there, “Ride, Sally, ride!!!” 

   

  
 Chloe is our 8yr old bichon. I got her when she was 8 weeks old. She has always been a great napping partner, the dog can sleep! But lately she has been following me around.  From room to room.  Makes me nervous. How they say, dogs can sense things?  I’m just going to say she just loves her momma!
© Nicole Szymonik and This Is the Pause Button, 2015. 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 am working on a mind reset. I have realized that I have been so upset at the chemo and I have lost focus on the real culprit. CANCER!

I already forgot that if my Doctor wouldn’t have recommended a colonoscopy back in January, that I would be walking around, with my old life, but with cancer spreading all over my body. That instead of doing chemo and SAVING MY LIFE, I would be hugging my family and friends in a different manner, and in a few years I wouldn’t be here. 

Let’s do this. ROUND 7! 
Nikki commentary: I had the opportunity to experience the birth of my niece this last week.  My sister is a very private person, so I will spare the details (it took a lot of convincing to get in the room!!). But what I will share, is she didn’t use any drugs.  I know from experience, that childbirth is the most painful thing.  And she didn’t even have Tylenol. She overcame the pain and powered through with grace.  Amazing. 

So, I am taking this momentum and helping it with my mind reset. As I fight cancer. 

  
Logistical health update: I have my niece’s wedding and a girls’ trip to the beach the end of September. So, in an effort to be finished with treatment and to avoid delays in treatment, I am going to start moving up my start days.  Wish me luck!
© Nicole Szymonik and This Is the Pause Button, 2015. 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.

July 4

Well, I should be writing about a few days off until I go back on Tuesday, but I have two more sets today. (Enter my 2 years old pouty’s face here)

I feel like a broken record to write that it’s been a rough go, but I would be lying if I said it was easy.  

We did make the road trip to Ohio to visit Scott’s brother, Jason, and his family and their new baby. It was nice to take advantage of the long weekend to travel. We had a nice visit and it worked out for me that they have a newborn. Without a lot of big plans, it allowed me to rest and sit. It sucks but I just generally feel better laying down. 

We missed the Dust family lake get together, but probably for the best. As they were doing the usual “forgot this, pick up on your way out here” texts, I was laying in bed in Ohio. 

But the biggest thing I have been reflecting on is that this is round 6. 6 down and 6 to go. And how crazy, hard this battle has been.  I’m encouraged by the continued support of family and friends. The constant support and prayers is amazing,

I am also reminded that I have 6 more rounds to go, and I wonder if i can do it.  I’m tired. I’m sick. And as my brother Jeff said, “I’m sick and tired of being sick and tired.” 

The good news is (there is always good news in a Nikki message) that I may not feel strong but I am pissed and being pissed helps light fire to keep me going and keep fighting.

Nikki commentary: today’s post title is inspired by Jackson Browne’s song Running on Empty. Give it a listen if you have a minute or two. 

  

The kids wanted to play Ring around the Rosie.  So I suggested after a couple rounds, they just circle around me. 
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July 1, 2015

I will say, the treatments become more familiar overtime but they DO NOT get any easier. And round 6 got off to a rough start.

The off week consisted of bloody noses and having some extra blood work to get an idea of where my platelets were. They were at 76 and since  I could always get the bleeding to stop, they didn’t seem to concerned. 

So, when going into round 6, instead of needing the typical 100 platelets, my new number is 80 (and I had 81) lucky me. And, since we are keeping track, I weighed 119 (1 lb increase from my last visit!!) and 2 lbs heavier from my lowest at 117. They even asked if i had lead in my shoes! Ha!

We had a good conversation on the rationale behind chemotherapy and why it is important to stay on th two week course. We also discussed my diagnosis and long term concerns with the disease. It just all seems like a bad dream. I’m not ready to put into writing what all the dr said but it did make me cry for the first time about the disease.  Normally, I cry from the physical pain from the chemo. 

Off to the infusion room I went and started my 4 1/2 hours of treatment.  I got sick, so they overdosed me on my premeds- which really pisses me off. I have been trying to be in control a what goes in (as much as I can be). And as I am vomiting, I hear from a different nurse asking “does she need more adavan?” And  a recap from my nurse how much I have received.  I should have shouted from the hill tops that I didn’t need any more, but it was to late.  And I spent the rest of the day and night in Lala land and feeling like complete shit.  I don’t remember giving Cecilia a bath and Scott said I laid down right after putting her to bed.  I went down around 8:15 to eat dinner and went back to bed. Woke up at 1:30am, to get a drink and take my contacts out. Stupid fucking drugs (I also am pissed off at the nurses). They will probably hear it from next time.
   
 

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Written Tuesday, June 23

Procrastination at its finest. One set of pills between me and 7 days off. Round 5 was ok.  I only threw up once, nausea was minimal and I had an appetite. I think it’s a combination of going into this last round feeling good and being health(ier) when I started and the lower dose. 

I had a few bloody noses (I just assume this is chemo’s fault), continue to have stomach cramps and the exhaustion is ridiculous.But overall, it was a good 7 days.  

So, what am I scared of? That since I feel ok, the chemo isn’t working? Was I too big of a whimp to handle the higher dose? If my cancer comes back, was it my fault I wasn’t stronger?

I tell my friends that if it comes back, that it was coming back regardless. The doctor explained there are three types of cancer patients: 1.) chemo killed the cancerous cells in the body, you’re cancer free 2) regardless of chemo, the cancer wasn’t coming back, you’re  cancer free 3) regardless of chemo, the cancer is coming back. There is no way of knowing (in today’s cancer research world) who falls into which category. 

I tell myself, it’s not coming back! And of it does, it was coming back anyways. 
Nikki commentary: Scott and I were having a conversation a while back (pre cancer) and I don’t remember exactly what we were talking about but I remember he asked me, “what are you scared of?” This question really stuck with me and I ask myself this same question from time to time.

I have always had fears, but becoming a parent has made me a scaredy cat. There is just so much on the line. From the moment you find out you’re pregnant, you just want the next appointment to confirm the baby is growing and healthy. And then you want them to be born, to hold and meet them. Then, they sleep and you panic, are you breathing? You have never slept this long??

And even more life events, when I lay in a new place (and at home) , I review my fire escape route in my head. To the more controllable items, you didn’t eat one vegetable today!! And what if you only eat chicken nuggets for the rest of your life!!

And cancer has made me weak. Scared to takes kids to the Botanical gardens or magic house. What if I get sick while we are there? What if I don’t have the strength to do it all?

So what am I scared of?? For now, I’m scared of cancer. The unknown and all of it that is outside of my control. Fuck you cancer!
© Nicole Szymonik and This Is the Pause Button, 2015. 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.