August 2015

Crystal is home.  Where to begin…

Written on Sunday, August 16th @ 12:11pm

We left early Thursday morning, Crystal had a appointment that afternoon with Dr. Kendrick, her surgeon. It was a beautiful drive to Rochester that day. The weather was perfect. And my mother, Crystal’s grandma, came with us.

I was looking forward to us three being together. Three generations with three different attitudes. Three women ready to battle this together with questions and gut feelings. What was even more fun was the drive there. I didn’t expect all the stories.

One story I learned was when I was about a year and half, which made my brother about 3 months, our parents had taken us on vacation. We had family in St. Paul so they seemed to go there a lot. Anyway, we go through a little town called Lime Springs and I learned that My dad and mom’s vehicle caught fire from a cigarette someone had thrown out the window of their car. My dad & mom had scurried to get us little ones out of the car on a very cold day. My mother sat in the ditch with my brother and I while my dad was trying to put the fire out and also trying to get things out of the vehicle. She said they lost everything, even the new stroller. My mom then said…I now think back and wonder what our parents were thinking because we were so young ourselves, it seemed to always be something with us.

I had also learned a story from Crystal. As we drove through another little town, like always there is this A&W that we pass and Crystal pipes up and says, “Mom, That place reminds me of your dad, my grandpa. He always took me there, it was fun.” I was shocked to hear her say that, then my mom piped up and said he loved that place. Which then made me smile. The funny thing is when I was little he always took me there too. Usually before I went back home to my moms. The A&W by Ellis…Oh the memories.

Needless to say we arrived in Rochester, MN. As we waited patiently for Dr. Kendrick to enter the room, we were full of questions but it’s funny how when the team of doctors walk in, you become kind of quiet. But the feeling we got was comforting. It made us feel positive. I had explained how we have lost all her doctors to retiring and have a new team not only in oncology but also as her surgeons so it is a scary feeling as a mother with change when everything before has been perfect. He could not of been more kind and confident. He was upfront about what their concerns were but felt confident it would go good. And with a smile he said I’m not going anywhere for about 25 years. Thank goodness I thought.

He then does proceeds to say, I know you know this and then looks to Crystal and says I know you want to hear you are cured. But the reality is you have a chronic disease that you will fight for the rest of your life. So wether it is 1 month or 6 months or 6 years you will always fight. So the goal or the idea is to stay on top of it and hopefully be able to take steps to control it. I thought to myself, it is hard to hear this I just want her to wake up after surgery for now.

We enjoyed our afternoon lunch at the amazing, “Victoria’s” and did a little shopping at their 1st on Thursday event and went for a walk in Soldiers Field…a full day.

Rod & Gage arrived late that night…Surgery was scheduled with the arrival time of 7:00am at St. Mary’s Hospital. So a little ice cream and pizza, in that order, then off to bed and can’t forget those prayers too.

Courtney, Cassidy, Bret & Michele arrived by 7:00am…Here is my update I posted to Face Book~

Friday, August 14th @ 8:05am

We’ve been here for an hour…Crystal Marie Kuehl​ is nervous but ready. Ready to get through this. Courtney Rae Kuehl​ & Cassidy Kuehl​ we’re excited to see her this morning & take a “Selfie” with her. Gage Barnett​ he is positive & loving. My mom, Shari Saari​ & my uncle & aunt are ready emotionally for all of us. Rod is quiet & me…my heart is racing…Together we are Stronger! Thank You all for the Prayers.

Friday, August 14th @ 1:32pm

Thank you for the support today. Crystal Marie Kuehl​ is in her room. We are hopefully waiting to hear from the doctor soon…

Face Book Updates: Friday, August 15th @ 6:16pm

Well our prayers are working. Crystal gets to come stay with us at our hotel tonight. She looks good. She is up & kind of walking. She really is at this moment just extremely tired. We are blessed & honestly I think we are all wiped. Even tho you act confident in the back of your mind you worry…
Thank you for the messages, kind words and support, I’ve read each one. You truly are a gift to our family.
As for Crystal they did remove the lymph node/tumor that was next to the aorta. They were concerned with the blood line attached to it with possible internal bleeding but our Surgeon worked his magic & so far so good. As he informed us…there is no cure, this is a chronic disease that she will battle for the rest of her life. And our goal is to stay on top of it.

As we drove home Saturday afternoon I was in a good mood. I was happy that the surgery was over. I was thrilled to be going home and knowing Crystal was so happy to be with her fiancee.

Crystal looks great but is very tired and very sore. She has four laparoscopic areas that they used for the procedure. She is resting and no dance for 2 to 4 weeks.

When we were eating breakfast before our drive home, I stated to Gage & Crystal, you know a year from now you will be married. I have to admit I am excited for you both yet nervous with all of the change that comes with it. See Crystal as a mom, it’s my job to raise you & know when it is time to let go. I will always be your mom, we will always be a family but now, Crystal you will have your family. Your immediate family at this time will be Gage and “Storm”. Gage will be the one that looks over medical. As your husband he will be one that cares and takes care of it, and of you. Don’t get me wrong, we are very lucky and feel blessed that Gage has come into your life. He is not only a good person but a person with a huge heart. He has brought so much joy to you which in return has brought us much joy as well. Some people Crystal never get that feeling. You are lucky. But it is still very hard to let go…When some people get married, medical and health are usually not a concern. I love you so much and I have gained a son. Remember what I have said to you girls? When you find a boyfriend, ask yourself if you would be proud of him as a person if he was your son? I can answer it as a mother, his mother and father raised a good man. I would be proud.

As for Courtney and Cassidy they are thrilled that you chose to have two Maid of Honors in your wedding…What a beautiful day, Saturday, July 16, 2016 will be.

The CR Spirits did perform on Saturday, August 15th at the Iowa State Fair and I loved hearing from all of you in the crowd, how well the Studio/Professional Team danced for us. It was hard to miss it but there is always next year. And how grateful I am that we can bring awareness to the platform I have created over the years, a true gift.

The messages, the prayers, the support we receive is truly amazing and makes us feel so very special. Thank You.

Crystal’s follow up appointment will be Thursday, September 17th.

 

 

 

 And her journey continues…

Monday, August 31st @ 1:00pm

The last couple of weeks have been crazy. Crystal has been recovering from surgery but it has been a difficult slow recovery.

The first week home she did get plenty of rest. She did get one exciting thing done during that week, she asked all of her bridesmaids to stand up for her. Maid of Honor are her sisters, Courtney & Cassidy…And then onto her bridesmaids, Kaitlin, Bridgette and Amy. There were tears and how did Crystal pick these girls…Well, a dear friend Brittany on the CR Spirits made a remark to Crystal something like, see Crystal you will always have many friends, but friends change through out your life but family…family is always family. Those photos are with you forever, just like family. Those words stuck with Crystal. She asked them each in a very cute way…A photo will be released on her wedding day on how she asked them.

Also during that week, Crystal and I were in Amy & Shane’s Wedding. We were so excited to be a part of that wedding day. Crystal even made a remark to the doctor that she was so excited to wear her dress and heels that he needed to make sure she would be good to go down the isle, 7 days. What a goal!

But I could tell by day 6 that things were moving slowly. Yes, Crystal still smiled but was not doing very good. Besides being sore from surgery, she seemed very tired, nauseas, headaches, a pain in her belly and back. But she continued on with a smile.

The day of the wedding, I had arrived to the location to get our make-up. When I got there, I knew immediately she was not good. The pain, the nauseas feeling was taking over. There were tears. My stomach dropped. What do you do? Amy is getting married, it is a beautiful day. Crystal looks at me, her make-up is on, she is beautiful but I only see little girl, wanting help. I stare at her lips, they are a light pink and she says, “Do not say anything to Amy, I will smile and get through it. It is her day mom.”

We were blessed to have Rod there ready to take us to the next location for hair. With him being there he could be strong for Crystal. The two of them sat in the truck, smiled and talked while it was my turn for make-up. Needless to say, I cried. So much worry…

We are now ready for the wedding to begin…We get the bride off to her spot. And the rest of us bridesmaids jump into Luci’s new vehicle. One thing great about Amy’s wedding is her bridesmaids were all Spirits. So a pretty close friendship with all of us. So even though we kept Amy in the dark, the rest of the girls knew what was going on with Crystal.

As we were driving to the wedding, Crystal who has been very quiet all morning says, “Ummmm I think I need to pull over, I think I am going to get sick”. Here we are all dressed up, ready for photos, we are now pulled over, out of the car Libby is holding Crystal’s hair up. And I stare out car door and try to make light of the situation…So Luci, I thought maybe we could break in your new Vehicle. She said, “Tiff anyone else absolutely not but Crystal she can break it in anytime”. The moment she said that it was hard not to cry…I stared at Rachel who was in the passenger seat, my heart was broken, Crystal & Libby get back in the car, I wipe my tears and think I have the best friends ever.

Amy looked beautiful. I was proud to be standing there by her side. I was happy Crystal made it through it. It’s funny when you look at the photos, no one really knows the story. Everything is beautiful, everyone looks happy, that is why you should never judge. You really have no idea what people are going through a smile can hide a lot.

So now it has been two weeks since surgery. It is Saturday, Rod’s birthday and Crystal is getting worse not better. She is nauseous and can barley walk with the pain in her back. She is frustrated and tired. As they check her in at St. Luke’s which seems to take forever, Crystal is becoming short tempered. I stare at my little girl answering her questions and then I could feel she was getting close to the end of her patients. Crystal states in a firm voice, “I have Cancer, I had surgery two weeks ago at the Mayo, I am in Pain…I need to know why”? And then the tears began. I must admit as a mother it kills you. The worry is exhausting. Finding strength and hope is even more exhausting. You even question why you keep planning for the future because honestly it all seems to change.

From the cat-scan we have learned there are two spots of fluid near the pancreas. They are not sure what they are. Is the pancreas leaking, is it infection, is it just fluid, is it??? We have no idea so what do we do…WAIT. That is what we do…WAIT.

I hate Cancer. I hate what this has done to my daughters life. I hate what this has done to my family. No answers just wait. And then I have to find strength to look at my daughter, my family and say give the worry to God. We can’t do anything and what we are making up in our head is not going to help…so give the worry to God.

Today is Monday…and we are still waiting. We are waiting to hear from Mayo. They want to see her and run more tests but it is down to scheduling. Problem is Crystal is to be going on vacation this Thursday, airplane and all…now what? We wait…

As I talk with Crystal this morning, I state all the right things. I state how I would love to make the calls to the doctor because a mother has different questions, has a different attitude than the one that is living it. But I can’t, she is the adult.

I explain that it sucks, that you have to worry about this Crystal, worry about taking medical records on vacation with you, worry about planning your future, worry about this cancer taking over. But I explain, it is your life and you are not alone. There are many cancer patients doing the same thing. You are not the first or the last. You are a beautiful strong woman, who is not going to let it win. So call Mayo again…be your own advocate. If I have taught you anything it is to keep planning for your future, to have a voice even if it shakes. Be mad at God, be sad but move past it. Give it a few hours and don’t let that anger that sadness have your whole day. Because then it won.

Now, I need to listen to myself, my own advice.