June 17

I have decided that I no longer want to have cancer. It sounds like a simple enough of a request. I am over the illness and the routine that goes along with being a sick person. We have the power to quit, well, almost everything in our lives, why can’t I quit this??

Round 5 is underway.  I am still low on my blood platelets (I am up to 85 from 50) and the Dr. is concerned that I’m not producing more faster. He made it sound like the first 4 aggressive rounds of chemo were really hard on my body.  (Take that cancer cells!) but it also tried to kill me in the process.

So, we are lowering my dose and seeing how I react to this round. Since there is always a first, I got sick in the infusion chair. Out of no where, I was like, I’m going to throw up.  Might as well start off with a bang. I cursed, as I threw up in a trash can filled with old fluid bags and the syringes that hook them up to needles. And I asked my sister-in-law, Donna, to take me home! She rubbed my back and comforted me. 

 
The hubby came to visit!  

  

My sister-in-law Donna! Next time we are headed to the spa!!
Jessica and Jaccob stopped by!
My friend Jessica spent the afternoon with me and brought me home!!   

My nurse! What they wear when hooking up the chemo bag! 
© 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.

Welcome😔, to the land of the living! 

June 13, 2015 

I had the best day! Isn’t it amazing when you wake up in the morning and you have an appetite. When you crave food, when your mouth doesn’t burn and tingle, and when you constantly do not want to throw up. 

Life is good today. Being off chemo for more then 7 days is amazing.  Which is promising for the future and also makes me never want to set foot in a cancer center again.  

We went to our parish picnic and the kids were awesome! I feel like after being in infant stage for three years we are finally getting our life back.  I.e going out and being able to stay out and enjoy activities.  The kids played games, we rode the Ferris wheel with Jeffrey and had lunch.  This afternoon we headed back for dinner and ran into people we knew and had adult conversations (about cancer – I really need to find a hobby so I Have something else to talk about!) 

Then we headed to my niece, Jessica, and her husband’s house. My brother and his family were in town and we had a great visit.  Jeffrey loved running around with his cousins and I had a glass of wine!!!

To top it all off, the picnic ended with fireworks that we could see perfectly from our front yard.  Apparently Scott has watched them a few times over the last 4 years.  I assume I was inside with a newborn or sleeping from always being up with the baby!!

Nikki commentary:  what’s that country song?  Life is good today…anyways.  Hit the play button! And let’s dance!!
© 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.

After the usual, floor 1 registration, floor 2 labs, floor 3 appointment and, wait, what? No infusion?

It was an odd day. My friend, Betsy, picked me up, and things just seemed off.  I had her drop me off while she parked the car so I could stop by the pharmacy and question them about a bill we received. Long story short, I ended up yelling at these two nice ladies and told them that the hospital could go f themselves if they think they are getting one more cent from us.  Then I cried and said a few other things and stormed off. 

Well, now to registration, holy line, is anyone working here?? 

Floor 2 labs:  the woman who was accessing my port, her office phone kept ringing and she kept answering it and it was just strange. We left the room and I was like, where did she go? Is she going to send in my labs!

Floor 3: Dr. appointment.  Mrs. S you don’t have to pay your co pay. Looks like you have a credit and you have reached your out of pocket max.  (Hmm..wonder if the ladies from the pharmacy called) 

Waiting for dr. Betsy and I are discussing our height so the nurse offers to measure both of us.  We are 33 years old and shrinking, already?  So now there are a couple nurses all remeasuring and seeing how tall they are. 

Dr. Appt: how is my blood work? Not good, you need 100 platelets for chemo and you have 55.  Chemo is killing my bone marrow and there isn’t a pill to make it come back. My body needs to make it (recover so to speak)  Come back in a week for a check up and hopefully infusion. 

 I explained how the last round was awful and I felt like I was dying and asked if anyone had ever died from chemo.  Yes, people have but I will not.  We will also lower my doses because it’s proving to much for my body. Discussed several other things and finally, we are on our way. 

I go to see a nurse to take out my needle and the infusion room has this awful spell that makes me want to vomit.  Note to self, bring something to put under my nose next week or wear a mask.  Egh. 

Walking out, I apologized to the pharmacy ladies, and one walked around to give me a hug. Felt better about that, since it’s not their fault I have cancer. And, even though I can get pretty passionate, my heart is still in a good place. 

So, how am I feeling:  pissed and upset.  My chemo weeks were lining up perfect for my nieces bridal shower and bacherlotte party, her wedding! And now I’m a week off.  But I need to remember my day to day plan and not lose sight of the forest for the trees.

Good news:  I really feel this is God’s way of giving me a break.  I have been praying a lot that He carry me through this battle and I physically need a break from being so sick. The physical pain is real and I don’t know how much more I can handle. 

So, I’m officially on borrowed time and hope to make the most of it. With lots of rest and fluids (maybe this weekend I will even have a glass of wine!)  To bad we don’t have a private  jet to getaway in for the weekend.
© 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.

Any stressful situation, when it is in present time and right in front of you, looks like a mountain. It’s easy to feel overwhelmed about the tasks that need to be accomplished. To be scared of the unknown surprises that can’t be planned. 

As I head into round 5 today, I can’t help but feel overwhelmed of the climb ahead. 3/4 rounds have been really tough both physically and emotionally. 

 At the same time, I’m feeling positive and strong today. In this fight, it’s an hour by hour, day by day, round by round strategy. So, here we go…again. 

Nikki Commentary: When we are going  through a trying time, my friend, Lyndsay,  suggests we just fast forward to the part in our lives where we look back on a situation and think, wow, how did we get through that? 

I love this theory in the aspect that it causes you to look at your stronger, wiser self in the future. And it enables you to know that you are going to make it and soon enough, the mountain will be in the rear view mirror. 
© 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.

My sister sent me this yesterday. They sang it in Mass. Faith is a challenging thing when you are sick. It varies from being a saving grace to your worst enemy.

Sacred silence, Holy ocean

Gentle waters, washing over me

Help me listen, Holy Spirit

Come and speak to me

God my father, Christ my brother Holy Spirit, sanctifying me. Lord I’m sorry, please forgive me Come and set me free

Sacred silence, Holy ocean

Gentle water, washing over me

Help me listen, Holy Spirit

Come and speak to me

Holy Mary, Gentle mother

God’s pure vessel, praying for me Saints and Angels, all in heaven Come and be with me

Sacred silence, Holy ocean

Gentle water, washing over me

Help me listen, Holy Spirit

Come and speak to me

Come and be with me

Come and speak to me

I will update this post through the next round to track side effects.

May 27, Wednesday day 1

Well, I almost got my wish with missing an infusion today. My platelets are really low, I just had to promise not to fall and start bleeding or if I get a bloody nose that won’t stop, go to the ER.  Apparently, platelets make your blood clot.  Pretty important. But what is also important is to stay on schedule and continue killing the cancer in my body as fast as we can. 

It was a rough day, but we got through. I yelled at the scale and told the nurse that it wasn’t right. I swore I had gained 3 lbs, only to be weighed again, and that confirmed I had lost weight.  I need to start drinking ensure and other high caloric drinks in addition to meals.

 Scott brought me and met with the Dr as well.  Jessica visited and  brought me home and then picked up my mom (met my sister half way) so she gets the superstar award.  I need to come up with something to hand out to my speic helpers….hmmm…

Hand cramping, burning eyes, cannot touching cold items and general discomfort have started. 

I sang “here we go again” in the chemo chair.  Jessica sang with me.  The  nurse just laughed.

I suck at having cancer…

Thursday, May 28- Sunday, May 31

It’s been a rough go… And it is causing me to get a little down in the dumps. It’s hard when you mentally feel good but your body will not follow the minds lead.

Thursday- Friday, general nausea, no appetite, and tired. Lots of tingly in hands and feet.  My tears literally burn my eyes, which makes me soo crying pretty fast. 

Saturday and Sunday, the crazy thing is, I will feel ok and 10 minutes later I’m running to the bathroom to throw up. I slept most of the weekend. And I find myself praying that God is carrying me through this round.  Just feeling really weak.  Weak stomach and a weak heart. 

The kids are crazy and funny and I can’t help but feel sad that I’m not enjoying it to the fullest.  But I’m here and I wake up every morning.  And I enjoy the little tid bits of calm through out the day.

Overall, feeling like I am sucking at being a cancer patient this week.  

I do have a new tactic for taking pills. Every pill is a future memory. Cecilia’s first dance recital. Jeffrey’s first baseball game..

Last day of pills

June 2.  It was a good day!

I got up and was on my own with the kids and we had the best day. Kristi came over with  Tommy and Nicholas for an hour and the boys ran around. Later, me and the kids had a dance party. When Scott got home, I could tell he was happy to see me feeling good.

Wednesday, June 3

It was a rough night and I didn’t sleep. One of the pills I take has a side effect of insomnia. I was meeting up with my friend Emily for a play date and I was thinking I should suggest the Botantical Gardens but it was nice that we were just going across tr street to her house. By the time I got the kids fed and dressed, over there and back home, I couldn’t get the kids fed lunch and down for a nap soon enough.  I was EXHAUSTED. When Scott got home, he asked, “what happened? You don’t look so great.”  And I didn’t.

Thursday, June 4

We headed to Effingham to take care of some business and Scott took a couple days off of work. It was an ok ft and a rough night. I could barely eat dinner and ended up throwing up right before bed. WTF! On an off day?!?

Friday, June 5

Didn’t sleep from 1am to 4:30am.  Emailed a friend who I going through a trying time (couldn’t stop thinking about her) are a bowl of cereal at 3:30am (it was good!)  while reading the Effingham Daily News.  

Had a meeting with Scott. And had lunch with my three sisters.  Decided we should rule the world! And solved the problems of the world! 

That night had a nice summer evening of the kids running around with their cousins!

June 6-8

Spent the weekend in St. Louis and I felt good.  I stopped taking the pill that causes insomnia and I’ve been sleeping, so that has been nice. Besides being tired and mild nausea, the side effects have finally gone away. 

   

 

© 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 say this half jokingly…but I have felt good the last 5-7 days and it’s hard to know what tomorrow brings.

Recap: 

Round 2: April 29- May 5

I was vomitting every day and had little to no appetite.  For the first time in my life I knew what it meant to “eat to live”. My body needed nutrition but had no desire to eat, which resulted in restless nights and long days. 

Round 3: May 13-20

I am on a new medicine to help with  nausea and my appetite.  I only threw up on Friday night, May 15, of the cycle.  I find Friday through Sunday of the cycle are the hardest.

On Sunday, we (me and the kids) headed to my mom’s house for extra help and Scott was busy at work, so it worked out well.  And my exhaustion is well, I just get tired easily.  But who isn’t tired!

Wednesday, May 20 through Friday, I was on my own with the kids and we rocked it!  We had a couple play dates and I napped when they napped. 

We had a nice Memorial Day weekend.  A family cookout, my nieces high school graduation party and some time spent at home. 

I really can’t complain about the last week, and I can only hold on to hope that a week from now I will be on the Eve of feeling ok again. 

Me and my momma from round 3 (she stayed with us a few days and is headed back in tomorrow). 

  

© 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.

Everyone on this planet has one thing in common. Regardless of your race, gender, marital status or last name. We are all the same in that we cannot live forever. That’s an easier way of saying we are going to die.

I have been reflecting on death a lot lately. My mind is all over the place with the awareness of a simple fact that we have all known our entire lives.

When I think of the sadness associated with death, it is purely selfish. One is sad because they are experiencing a loss. One feels empathy for the loved ones going through the difficult time. 

When I applied the scenerio of dying to myself in the past, I thought, if I knew I was going to die, I would quit my job, travel the world and really start living. What I have come to find out, is by the time you get the wake up call, you don’t feel like doing a whole lot. 

Over the last 24 hours, I have been reflecting on death in a manner of saying goodbye. Tomorrow we are visiting an old family friend who was given a terrible diagnosis and a short time to live. I have so many questions. What do I say? What should I do? How are they coping? How is she doing, watching her husband of 50 plus years, her best friend, how does she say goodbye?

And, then, it brings me back to watching my father die. Hospice. What a word. The agony he suffered, the pain, the goodbyes. 

There is something special about saying goodbye. A situation that shouldn’t be taken for granted. Because others don’t get a chance to say their final words. 7 years ago, I was in the coffee aisle at the grocery store when Scott came walking towards me. His mom died in her sleep. There was no goodbye. Just a rush to get on a plane to get there. For what? For why? 

So, anyone who is reading this, take this as your wake up call and I challenge you to change ONE thing in your life in an effort to live a life worth living. Now, I said, change YOU.  Not your spouse, your kids, your coworker who drives you crazy. The only person you have control of is yourself. 

Me?? What am I going to change? One thing, hmmmm.  That will be for another post. 

As for living, I just keep thinking Jeffrey and Cecilia’s life would be better with me in it.  Hell, after 9 years together, I think Scott’s would be too😉 and there I go, being selfish again!

Nikki Commentary:  when we took this photo, we decided to be each others support group.  A great man!!

  

© 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.

God: So, tell me about yourself.

Me: well, I am the youngest of 7, the baby of the family.  I was a surprise not a mistake.  I joke that they had to keep trying til they got it right😉 (insert laugh here)

God: general amusement by not so funny joke

Me: I was born and raised in effingham, I know, I know.  “F-ing ham”. But it’s named after a German settler, a general or something like that.  You would like it there. We have a big cross and a strong Catholic and Christian community.  

I attended Saint Anthony Grade School and High School.  “Go Bulldogs!” And had the best childhood.  Didn’t realize how good I had it.  Have a supportive family, lots of nieces and nephews, and an amazing group of friends.  I  am still very close to my family. 

My group of girlfriends are still a big part of my life. Oh the memories, we use to sit out at the lake, just us girls, and talk and stare at the stars for hours.  Beautiful out there, especially at night.  We were just solving the problems of the world. 

And funny story, I actually met my husband in Effingham, well, not until later but that is how we originally met. 

God: silence. (He acts as if He has heard this story before?)

Me: anyways. I loved dancing in high school and actually danced for a year on the college dance team at Saint Louis University.   I miss dancing, I consider signing up for a dance class but who has the time but I guess I just need to make it. 

Anyways. Off to SLU I went in 2000.  It was the single scariest thing I had ever done.  New city, new people, new life.  I adjusted (eventually). First two years were hard but my junior and senior year I finally found my bearing and had a group of friends who are some off my best friends til this day. Gosh we had fun.  

Funny story, a group of us worked at a bar/ restaurant downtown St. Louis called Sybergs.  Man we had a good times.  

God: unimpressed.  

Me: oh, it was innocent fun. I guess you probably saw all that. You have to admit drinking under the arch was a good idea at the time.

God:  hmmm.  

Me:  thanks for having the officer not give us a ticket.  But I graduated, class of 2004.  Go Billikens! And off to London I went. 

God:  ….

Me:  ok, I’ll fast forward.  I mentioned Scott, we ran into each other after a friend’s wedding in St. Louis. I shouted across the bar, “Scott Szymonik”.  This was when I had my nice boobs, so I was feeling pretty good about my pick up line.

God: …

Me: I talk a lot, I know.  I am an open book.  Probably share too much.

God: so where do you see yourself in 5 years? Starting with the year ahead.

Me:  why do companies always ask this question? Well, lucky for you God, I have a plan.

So, this Fall Scott and I are celebrating 5 years of marriage. We discussed going on a long weekend trip without the kids.  Maybe Hermann, MO or wine country. In September, my niece, Lynn, is getting married.   I’m a bridesmaid.  It’s actually pretty cool.  She is having her sister, Jennifer and her Aunts, me and Angie as the bridesmaids.  Her “three sisters” as she called us.  We are so close in age and were raised doing everything together.  Should be a rocking good time.  I love weddings and the shower and bacherlotte party – wahoo!  And the kids are old enough I can relax while leaving them with sitters.

Anyways.  To top it off, girls trip! To the beach this fall with my St. Louis girlfriends.  I know, I cried when I bought the plane ticket in February, but that’s just because I’m going to miss the kids.  I know, they will be fine.

But in general,  just looking forward to a summer of enjoying being at home with the kids.  Visitng the zoo, magic house, botantical gardens, the water park.  And may be making it out at night for the free concerts in the park.  Enjoying the luxuries of staying home so I can have the kids ready when Scott gets home from work. Makes me happy just thinking about it.

God: silence.

Me:  oh.  And you know how the year of 33 was all about me!  That’s because we want to try for baby number 3 this fall.  Around my 34th birthday.  I know, crazy, I even told my girlfriends that I may be pregnant on the trip.

God: silence and seems to be getting further away.

Me:  I know, I am a planner. I love a good plan.  My mom always says she never planned like I do, just let life happen.  But I always thought we would have more kids and we want them close in age, so yes.  The year of 33 will be a year of just that, get my body back to myself before baby number 3.

God: … 

Me:  are you still there??  Did you hear my plan?

Me: Cecilia wasn’t planned. 

God: ehh.hmmm??

Me:  She was the best surprise ever but she wasn’t planned. Being my plan.   I call her my “game changer” baby.  Jeffrey changed our lives and made us parents and Cecilia changed the game and I quit my job (I don’t have a job!) to spend time with my kids.

God, are you there?  Do you not approve of my plan?  It’s a fine plan. It’s not asking much. We attend Mass and will continue to pray (was that supposed to be outlined in the plan??)

Because, God, You see, You changed my plan or must have disagreed with it because as You know, I have cancer.  So there is no one year or 5 year plan.  There isn’t celebrating anniversaries on trips and showers because I am sick.  

I’m not enjoying my kids because now I’m coordinating people to help me watch my kids so I can rest or vomit or go in for all day infusions. 

And there are no more babies in my future because there is a good chance that chemo will make me infertile and even if it doesn’t, I need to be cancer free before considering getting pregnant. Which is in 5 years. FIVE YEARS!  And what if it comes back before then??? 

So what is your 5 year plan for me, God? Because  I am having a hard time understanding it. 

God: silence

Me:  a lot of people are praying… Are you listening?  

God:

Me: I need answers God!!! are You always this quiet!?!? 

© 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.

It’s normal for a 2 year old to spit in the toilet and then flush it, right? 

I try not to get sick in front of the kids but Jeffrey has started spitting in the toilet and then wants to flush it.  Oops.  I guess atleast he isn’t running to the bathroom first. 

© 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.