September 2017

Crystal wrote a little something for you on this day in September

Written on Friday, September 8th @ 2:35pm

Sitting in my bedroom, looking out the window, thinking I need to get this update done to get the prayer warriors starting up again.

The weather had a chill in the air yesterday which I must admit gets me excited for wearing sweaters, watching football and then all of a sudden it’s Halloween. Yep, I sure do like fall.

Thinking of football, what a beautiful and thoughtful new tradition the Iowa Hawkeyes have at their games. Waving to all of those fighters in the Children’s Hospital. Makes you tear up when you see it.

Since the last update we only had one scare, Crystal had been feeling ill with a constant headache and had been having some back pain. She is a tough cookie but had enough and went to her family doctor. With her medical history they needed to rule out Cancer in the her bones. We were very shocked to even think of that, we thought it was just a flu bug that needed some medicine to help beat it. She was taken care of immediately by our wonderful family doctor. And then we got good news, no Cancer, it was probably a virus that lasted a little longer than she wanted. But what a day/week of emotions.

We also in the last few months have celebrated Father’s Day, Cassidy’s (Crystals little sister) purchased her 1st home all by herself, Fourth of July, Crystal and Gage’s 1 year Anniversary plus Rod and I celebrated our 27th year Anniversary. Of course their were birthday parties, concerts, parades and fairs, crazy to think how much life you have lived in just 3 months. It kind of makes you think should we be slowing down or is that living life? What have you done in the last three months, I bet you would be surprised and will forget some of the things you have done or have lived through just in that short period of time.

A thoughtful thing happened in June for Crystal. There was a girl I met years ago on my dance team. As she danced with me, I got to know her, I would even make her lunch during her breaks at college. We became good friends and chatted all the time. This girl, this friend of mine is named Amy and she has a daughter named Alanna. Alanna graduated from high school this last year and her graduation money she received, she graciously donated to Crystal. Such a kind thoughtful gift from a young woman just graduating. However, I think Crystal was even more excited when Alanna started following her on Instagram because see, Alanna is a Supermodel. Thank You again for helping Crystal. Thank you again for making her feel special.

So of course as a mom, I want her to feel special again as we get ready for the next set of scans. Tuesday, September 19th is the big day. Your prayers, kind words, stories are so very welcomed.

And when you send those prayers, those positive vibes please throw in some extra ones for everyone that has been affected by the natural disasters. Could you even imagine fighting Cancer and losing everything on top of it all. It breaks my heart.

A note from Crystal…

I usually don’t like to write in my caring bridge. I am very thankful that my mother has a natural talent in writing and can explain our life’s journey through her eyes. She helps us get the prayers that my family and I need.

A lot of you ask why don’t I write… And I say because it doesn’t come naturally to me and explaining my life while I am living it can be depressing. Especially when I am going through chemo and surgeries at the time.

I usually keep my thoughts to myself and when you see me I always have a smile on my face. Sometimes it is a real smile and other times it is fake. You can’t be happy all the time when you are fighting cancer.

A lot of you ask how I am doing? Am I nervous? What does your gut feeling tell you?

So far I have been feeling pretty good… just a few back problems. My life is always crazy busy… that’s how I like it! So it leaves very little time for me to worry about cancer and pain.

Am I nervous?

I am always nervous. You never know what the doctor is going to tell you. My cancer is so rare, different and confusing that you never know what they are going to say or what they are going to want you to do. The nice thing about my doctors at the Mayo Clinic is, I love them and I trust them with my life.

So all you cancer patients out there or even the ones that are struggling with health problems~ My advice that mom has always given me is to ALWAYS trust your gut… If you are questioning a doctor, get a second opinion because then when you get results you don’t want to hear, you will know that you are doing what your gut is telling you to do.

My gut feeling right now… I am not really worried about cancer at this second… I am just trying to get ready for CR Spirit Auditions on September 13… after those is when I will have time to worry about cancer.

When I go into my appointments I always get my mind ready for good news, but also bad news. It is Stage 4 Pancreatic Cancer with a high grade neuroendocrine tumor… so you can’t always prepare for the best.

For those who don’t know what a high grade neuroendocrine tumor is and honestly I didn’t really know what that meant, a high grade neuroendocrine tumor is a type of carcinoma. It is a fast growing and aggressive cancer. That is why we go to the Mayo every 2-3 months so we can stay on top of it.

With that being said I am very lucky to still be alive. Back in 2013 we didn’t know if I would even make it a few years. And look at me today. I am 25 years old. I have graduated college. Been on the CR Spirits Professional Dance Team for 8 years. Married to the love of my life. Bought a beautiful home. And I have learned so much in the past 4 years.. not just about myself.. but about life. I wish in my teenage years I would have known what I know now. But that is just life that is how we grow has people.

Now lets get back to CR Spirit Auditions on September 13th! This is something I always look forward too. It’s like a fresh new start into something I love. Thank God for this dance team & studio. I don’t know who I would be today without it. Mom you truly have a talent. I wish every single kid in Cedar Rapids could be a part of this studio. It is amazing and I am so happy it has been a part of my life since I was born. I wouldn’t have it any other way.

So I am going to wrap this up. I would love some prayers on September 19th. I love hearing from everybody that week! And if I don’t get back to you it is because I am getting so much love at once and I can’t respond to everybody.

Also I love hearing other peoples stories and goals in life. That is one thing I have learned about myself this year. I love hearing other peoples journeys… not just about cancer but life. It makes me happy. And I love hearing peoples goals. I think that is why I love teaching the Junior Spirits ages 13-16.. they just have so many goals! It is the best part about my Tuesday Nights!
Thank you for reading! Have a great day!

-Crystal Marie

Another miracle…

Written on Wednesday, September 20th @ 11:10am

I slept so good last night. Woke up early this morning, returned some of your messages and fell back to sleep. It is crazy how exhausted one day at Mayo can be but like I said to Crystal, that worry/stress can sure knock you out, and you don’t even realize it.

The day started for me at 3:15am, what I didn’t expect was the terrible fog. As I drove over to pick the kids up from their home for the drive to Mayo, I realized how bad the drive was going to be. I began my praying, my begging for us getting to Mayo safely.

By the time we were out of the Waterloo area, Crystal and Gage were sound asleep. My knuckles were probably white from hanging on to the steering wheel. Looking for a possible car all of a sudden in front of me, to a deer running out in front of me. Oh trust me, I chatted with God the whole time. I even looked for the good. Let see, pouring rain or fog? Ice storm or fog? Snow storm or fog? Cancer back or fog? Yep, fog won each time. And finally the fog lifted for the last hour of the drive to Mayo.

Things were in a little different order when we got to Mayo. Nothing big, just we usually start with blood but this time we started with the MRI. Crystal, to be expected was a little on edge, quiet and took care of her appointments as Gage and I followed behind her. I even tried to tell her, honey smile because right now, you are still cancer free, enjoy this moment. Ummmm that went in one ear, out the other 🙂

Crystal back in the MRI waiting room made some friends, some other fighters and enjoyed telling Gage and I about them. Crystal loved their energy. They were positive. And even one of them, Mark has his own private plane but had to fly the airlines right now because he is in the process of getting a bigger plane. He was very happy with Mayo because his first diagnosis was not good. And the woman, she was from Chicago and was missed diagnosed so her Cancer is now all over her body. She now has moved to the Waterloo area so she can be closer to Mayo and will continue to be on top of her Cancer so she can keep fighting. Crystal I think enjoyed sharing her story too with others that fight, where Gage and I have no idea. I am sure she then doesn’t feel so alone.

After her tests, we had a quick snack, did some shopping or I should say looking, a late lunch and then it was time. Here we go.

There was really no waiting this time. Crystal checked in, they called us back. We got to the room and sat in the order we always do. We learn we will meet a new doctor to us but he is on her team. We meet Dr. Mahipal. He is kind. He is positive. He walks into the room with a smile. He introduces himself, we shake hands, he comes right out and says, the scans look great. And the three of us, sat with our mouths open. He said, it’s good news. We still sat with our mouths open, with a slight smile. I guess shock. lol

They still see the spots in her liver, no change and not sure what they are. Including the ones in her lungs and a spot on her spine. Now honestly none of us had heard of the lungs/spine ones. So I of course had some questions but he assured us that they have not changed. And they are not sure what they are. So this appointment is good news. So celebrate, he said in his accent, and we will see you in January. That is right, January! She will get to enjoy Halloween, Thanksgiving, Cassidy’s Birthday in Vegas, Christmas and New Year’s Eve with no worry, no tests, no chemo, no cancer.

As we leave, we walk down the hallway, we stop to catch our breath, my eyes begin to tear up. And Crystal says, I am so exhausted. She calls her dad. She calls her grandma. We video her sisters. And then a post to Facebook. Life is good. Now the drive home to celebrate. A hour into the drive, I look at Gage in the review mirror asleep. I look at Crystal in the passenger seat asleep. And I smile and think did that all just happen. Thank you God for whatever journey this is I am on.

Thank you for the messages, the positive words, the cards, the flowers, the love, the prayers. Thank you God for guiding me on this journey. Thank you to her team of doctors at Mayo, Dr. McWilliams, Dr. Pitot, Dr. Mahipal, Dr. Banck. Thank you to her team of doctors at Family Physicians.