October 2015

Happy Halloween!

Written Wednesday, October 28th @ 11:30am

I am proud to say, Crystal has finished her first round of chemo. She was a trooper. Crystal walked everyday, she smiled everyday, she pushed through everyday. Crystal danced, she found her wedding dress and when she felt like she couldn’t make it through a day, Crystal took a nap. She took time for herself. She is strong. She is my hero.

Before starting the chemo, we had stress on getting her meds mailed to her on time. These specialty pharmacies mail your meds, usually because of insurance. They mail your meds to your home which sounds simple and easy. I am sure it can be wonderful but it can be a nightmare at the same time.

See even though they state they will be mailed to you, the person on the phone who really knows not a dang thing about you is not worried when you get your medicine. And it really is not their problem.

Even Crystal’s doctors were at their wits end. You could hear it in their voice, someone was lying and the doctors knew it was not Crystal or them. The doctors themselves made three phone calls and got no where! Crystal made four phone calls and got no where.

Watching Crystal cry about not getting her medicine on time. Being upset because it will screw up her schedule of when she starts her chemo. And then being worried that they may have to redo all her blood work because she won’t get to start when they thought. Watching, listening to all of this made me furious.

As I told Crystal I am going to call the pharmacy. Crystal begs, “Please mom don’t. I don’t want them to do something to my chemo. I don’t want them to give me the wrong stuff. There is nothing we can do, even the doctors have tried.” I said, “Crystal it is not a fast food restaurant they are not going to do something to your medicine. This is wrong. Even the doctors are shocked.” But I told Crystal I won’t call the pharmacy. I didn’t want to upset her anymore than she was.

So I called my insurance company…BCBS! They were absolutely wonderful. The woman on the phone could hear/feel my plea.

All I wanted to know is who gets the letter from my lawyer if my daughter does not get to start her chemo on the day her doctor wants her to start it? My daughter has Stage 4 Pancreatic Cancer and is in tears not because of her having Cancer but because of not getting her medicine on time. Which in return frightens her and her family that this is hurting her health. So do I send it to CVS Specialty Pharmacy or to my insurance company…As I also explain to this caller at BCBS, the doctors I know are on my side. And I know that I pay a pretty penny to have this insurance since my husband and I own our businesses. Plus our deductible has been met by the first month of the new year for the last two years. As this kind woman then puts me on hold…

I wait patiently and keep reminded myself that none of these people that answer the phone know our story. Some probably are making minimum wage and just doing the simple guide lines. They probably have older people who don’t understand why everything is over the phone/internet/mail and get frustrated. At that moment she comes back to the phone and it explains to me that she herself called the pharmacy. I must admit, I was shocked, I was happy that someone listened to me.

She also found their story confusing and honestly didn’t make any sense. The order was placed by the doctor on Friday, October 2nd, today is the 9th and they were not promising anything until the 12th. It should not take that long at all. But this kind BCBS woman explains to me that she is personally going to stay on it. And that the pharmacy has informed her that Crystal will be receiving her meds by 6:00am Saturday morning, remind you this is late Friday afternoon and we were told there would be no deliveries.

Now the best part of this story, is as I am on the phone with BCBS, Crystal is calling my cell phone. I tell the lady at BCBS, please hold it is my daughter calling me. Crystal says in a loud voice, “Mom you are not going to believe this but CVS just called and they are delivering my meds tomorrow in the morning! Can you believe it?” I said yes. I called the insurance company and they called the pharmacy, I am still on the phone with the insurance company so I will call you back. Crystal goes…”So you called the insurance company?” Yes, because you told me not to call the pharmacy and I knew I was calling someone. “Thank you mom”…is a wonderful thing to hear.

Thank you to the woman on the phone who was polite, listened and solved it. The pharmacy delivered those meds because of you. Thank you for taking the time. For having a heart and hearing me out.

So needless to say our darling Crystal did get to start her chemo on time. During this round of chemo, Crystal had some big things coming up. One was her engagement photos and another being one of her wedding dress shopping days. I must admit, I really wanted it all to be canceled until she was done with this round but Crystal made it clear she has been waiting to feel good since her procedure in August and she was ready to do this. I sure did pray to God. I just kept whispering to myself, okay God this is in your hands.

First up, her engagement photos. I have not seen them yet but I did get to see the couple that night. As one of the Junior Spirits said to her that night…”Crystal you look like you are glowing”…Jade, I can hear you saying that to this day. It puts a smile on my face.

Next was the dress. Never did we dream we would find the dress at the first place. It was dress #4 that she tried on. And let me tell you it is hard to not show anyone the photos & videos. You will all have to wait for the big day to see it. There were tears. Yes, happy tears. I wanted to reach out to Gage & thank him for making my daughter so happy but then I thought, he is just as happy.

 

Here is what I posted on Facebook.

What a beautiful & emotional afternoon. There were smiles, laughter & tears. Thank you God for this day. Thank you for the sun, the relaxing car ride & to be able to have my own mother here with me for this moment. Thank you for having my daughter, who has been on a week of chemo pills, feel good enough to look for her wedding dress.
Oh how we have waited for this day, a long wait for Crystal Marie Kuehl​ to feel good enough to begin looking for her dress since her surgery in August.
Gage Barnett​, your mother Nikki…is wonderful. I feel so happy this evening, I feel lucky.
No one is allowed to see her dress until the day she walks down the isle. Maid of Honors Courtney Rae Kuehl​ & Cassidy Kuehl​ & her bridesmaids Kaitlin Johnston Boyse, Amy Thomas​ & Bridgett Barnett Schluter​ you will be the lucky ones to see it before.
Mom, Shari Saari​ thank you for the gift…I know it was for Crystal but in the end it was for me too. We are blessed. There is a melody in my heart…❤️

Now this round is done. Crystal will get to enjoy Halloween this weekend. Plus we are doing the Strides for Stripes Walk in Des Moines on Sunday. It is a Zebra Walk and the proceeds go to Carcinoid and Neuroendocrine Tumors. Thank you for the dear friends that are walking this for my daughter. Thank you for the support. It warms our hearts. A small walk and Crystal’s Team is bringing almost 40 walkers!

We also know next month when Crystal does her second round of chemo, she will be off during Thanksgiving! YaY…Life is Good.

Some of you have asked about the Spirits in California. Well, we have decided not to go. Yes, a fun opportunity but I believe their will be more to come in our future. Crystal would have been there in the middle of her chemo round which can get bad. Blood counts, fevers I just wanted her to be close to home during that time.

Crystal did cry because she felt she was holding back the team. It was a Tuesday night when I knew we were not going. A mother in my dance studio had come up to me and asked how things were going…I stated the latest let down. She then told me a story when she was fighting Cancer. She found herself getting sad about things she could not do. And what kept her going was a saying…”It’s not no, it’s not now.” Oh how I needed to hear that saying. Thank you God for putting her in my path that night. I have used this saying so many times in the last couple of weeks. It makes me cry typing this….

I sure have met some incredible people on this journey. And I have learned even more about her cancer with the help of these new friends/patients/doctors. Crystal’s Stage 4 Pancreatic Cancer is rare at her age. Her type of Tumor is an Insulinoma which again is rare and what is even more rare is Insulinomas are usually benign. Plus an Insulinoma is a Neuroendocrine Tumor. So purple zebra ribbons for her! But as a doctor has recently told me, it is Pancreatic Cancer anyway you look at it, just a different form.

I must admit lately I have struggled with talking about Crystal’s Story. I get so sad when I think about it. When I talk about certain things that I can recall so vividly. I will never forget hearing those words when she was diagnosed. I will never forget the feeling I got when I could feel all of your prayers. It seems I am more worried about this next appointment coming up in December. December 10th & 11th. Why? Is God preparing me for something or is it because we have a fun exciting year coming up and I don’t want it to be ruined with heartache.

You ask me how I get through this. I always say, I try not to think about it. The minute it comes into my thoughts I focus on something else. I will plan things for the future which helps keep me positive, it gives me a purpose, a goal to reach for. For a moment I feel like we are not living it but lately it has been harder for me to do.

What have I learned these last few years…

Life goes on even with heartache.
People come into your life for a reason.
Always try to look for the good because in the end you will find happiness.
Believe in yourself, embrace the word HOPE.
There are more good people out there than you think.
Surround yourself with people that lift you up.
Stay away from drama, that is the devil in disguise. As they say,
“I would rather live my life as if there is a God and die to find out there isn’t, than live my life as if there isn’t and die to find out there is”.