I can’t sleep.

Written Monday, October 29th @11:30pm

I am laying in bed, tossing and turning, my mind will not rest.  I guess a perfect time to do a little update for you and get those prayers started for Crystal’s Mayo Appointment on Wednesday.

Crystal is looking great.  She feels good too.  But like she says, I have felt fine before and the cancer still had come back.  Yes, she has had some emotional days, I think we all have, however we’ve been extremely busy and that has helped keep her mind on other things.

Crystal has been dancing like crazy, with all of the changes in the dance studio it has been very busy and uplifting, positive also it has been going well.  Crystal was excited for the change, yet nervous how she would feel about it and after our first “Experience” she said, “Mom, that was fun.  I really didn’t know I would have that much enjoyment with it”.  I must say, seeing her smile and happy made me even more happy that we are still dancing.

Also since the last time I updated, Crystal and I went to Laughlin, NV.  It was wonderful, it was perfect, it was needed.  Just a few days at the pool, then some sight seeing.  Memories were made and yet it gave her sometime to relax after that last painful procedure.

I can tell you a little story.  We were doing some shopping at Bath & Body Works, one of our favorite stores.  As we are smelling some of the wall fragrances, picking our favorites, Crystal had picked one up and said, “Oh No Mom, don’t get this one.  It make me almost sick to my stomach”. I said, “Does it smell bad? What’s wrong with it?” Crystal says, “When I had my apartment with Teal (her roommate), we picked this smell for the our place.  It was when I got sick.  I can’t smell that mom.” Crystal walked to the other side of the store.  That was it, she was quiet.  We bought our stuff and left.

Crystal had a very hard time with clothes that she wore when she was first sick, the thought of wearing them again made her sad.  We got rid of a lot of clothes from that Christmas.  The smell of Windex because we were doing a deep cleaning in the studio before the new year and she had no energy. And then the smell of this wall fragrance…So that got me thinking.  When we were on our family vacation in FL in 2013, we had no idea how sick Crystal was, on that trip I ate a lot of this Salted Carmel Ice Cream, it was amazing, I had never heard of it before.  Coming home from that family trip is when we learned of Crystal’s diagnosis.  Makes me sad typing that memory.  Anyway, a month later some of my students got me a gift, some chocolate that was Salted Carmel since they knew I loved it on that vacation.  You know, I took one bite and I was sick.  I couldn’t eat it.  I can’t handle the smell of it or the thought of it…

They say out of the fives senses (touch, smell, sight, sound and taste), smell is more related to our memory system.

Anyway, thank you in advance for those positive vibes and prayers.  Happy Halloween to you all.  This last weekend we celebrated Halloween as a family since we knew this Halloween would be a little different for our family.

Wonderful Wednesday

Written Wednesday, September 12th @ 9:00am

Sitting in my kitchen, drinking some coffee and watching “Christopher” excuse me, “Chistopurr” play.  Yes, we have a new addition to the Kuehl Family.  Approximately a 4 month old kitten.  A veterinarian happen to rescue 3 little kittens that were left in a box, behind a local store.  I guess so they could die?  People can be so mean.  I never thought I would be a cat mom but goodness he stole my heart.

I thought today would be a good day to share how Crystal is doing.  Your fighter is strong, happy, confident and living.

We have learned that Crystal’s next Mayo Appointment will be on Wednesday, October 31st.  It breaks my heart to hear her say she doesn’t want to go.  She is not the only one that is afraid to hear what the doctors find but to stay on top of this fight she has to go.  Now how do we keep from worrying, from stressing about the appointment, well we keep busy.  We keep planning.  We keep living.

Crystal has a new journey going on in the dance studio, so that is keeping her Spirits Alive.  Let me share a little bit about this journey.

I started the CR Spirits 25 years ago.  I just thought it would be nice to get out of the house once a week to dance.  To have an adult dance team like the Dallas Cowboy Cheerleaders only here, locally.  I mean I married young, I wasn’t going anywhere so where could I do something like that only here in Cedar Rapids?  See I have no former dance training but I love music and for some reason, I could/can choreograph steps quickly to music.  Do you believe in Guardian Angels?  I do.

I gave myself a goal to have a dance studio of little girls in just three years after starting this Professional Dance Team of women.  You know what?  It came true.  In a couple months of starting this dance studio we had a year waiting list to get into the CR Spirits.  

For 25 years I have been blessed with opportunities that you could only dream about.  Oh yes, I have had my share of negativity but I smiled through it all even on those days I question those thoughts, those people, those remarks.  I could share stories with you…

And now today, my children are older, I am older and I feel like the last 5 years has been extremely hard to run this dance studio through everything we have gone through as a family.  A dance studio is uplifting, creative, positive and fun, yes…it should be fun.  But it is hard to be the owner/choreographer and yet a caretaker to someone who you unconditionally love that needs you.  Some days you just don’t want to dance, choreograph, and smile through it all.  Yes, Crystal’s journey is my journey.  She is my daughter, her life affects my life.  Isn’t that the way life goes?

I wanted to make it to my 25th year with the CR Spirits.  Just think, a dance studio who has been in business for 25 years.  Who has been changing the lives of girls/women for 25 years.  Who for 25 years has had 25 Professional Dance Teams with approximately 13 women every year volunteering throughout this community.  These women gave their time, their talent, their life experiences to help build each other up and build a network and all along they were supporting me.  It wasn’t until I grew older that I realized what blessing that is.  Again, I believe in Guardian Angels.

So with Crystal’s last cancer fight, I explained to Crystal that I am exhausted.  I think it is time for a new journey for both of us.  It is time to say good-bye to the CR Spirits.  I am 48.  I am not sure what to do but I do know that I want to leave on a high note.  I am proud of where we are and what we have accomplished over the years.  I am proud of the guts, the courage and the strength that I had in me when I was the only one that believed in my dream.  I will miss it but I am ready embrace something new.

With those words I watched Crystal cry.  I watched the tears roll down her face as her eyes stared into mine.  She knew there was a possibility but I don’t think she thought I would do it.  As she says, “Mom, we can’t end this.  I love dancing.  I love performing.  I love teaching.  It helps me feel alive.  It takes me away.  We are good at it.  We are good at coaching and building others up.  We make a difference.  You just can’t quit the CR Spirits.  I have lived Spirits my whole life.  What if my cancer comes back, I need Spirits in my life.  It has helped me beat it.  You can’t quit this, please mom.  Don’t you want to change more lives mom?  How many people can say they do what they love?  Seriously mom, like you say people forget their passion, their love and they become bitter, gossipy and negative.  I think this is a bad idea.”

Needless to say it broke my heart hearing her talk, watching her cry.  She made me question everything I was confident in doing.  The next two days I prayed, I begged, cried and prayed some more.  I asked God for a sign, to give me strength, to give me a new outlook, to give me something.  I actually felt guilty asking him, why…because he just answered everyones prayers with Crystal’s fight and now I need help again.

But I listened to my gut again, my inner voice.  And chatted with my dear friend Kevin.  Yes, there will always be someone better than you.  There will always be someone who does not like you.  But does any of that matter?

Funny thing, I asked Rod for advice.  25 years ago Rod didn’t really care what I did.  We were both 23, already married 3 years with a one year old.   Marrying young we had obstacles, we both were still growing up.  Rod didn’t think the CR Spirits would ever take off and goodness when it did, the jealousy became apparent.  Marriage, family it is a journey, why share that with you?  Because sometimes if you can hang on through that rough patch you can get to the other side.  If you would have asked me 25 years ago that Rod would have a positive idea for the future of the CR Spirits I would have rolled my eyes but look, 25 years later, I liked what he had to say.

So yes, a “New Experience” for the CR Spirits begins in October.  No one can say I didn’t try.  No one can say I didn’t use the talent God gave me.   www.crspirits.com

I have to take a moment and thank some pretty incredible people that made this last journey a little more hopeful.

*Some parents in the dance studio who started the gofundme page.  You know at first I was reluctant to do this when you first came to ask me if it would be okay for you to help us.  It is such a humbling, an embarrassing feeling to have people give but I could feel how excited and happy you all were to help, to feel like you were doing something for my family.  It is very hard to just say Thank You, very hard.  So again, Thank you Amy, Laurie, Tammy and Stephanie for being positive, thank you for being hopeful.  Thank you for loving us and making us feel special.

And to the people that gave to the gofundme page, we are blessed and we are thankful.  I hope you each received our thank you’s and know that money is there waiting for the expenses.

*Crystal’s new Fighter T-Shirt has been a blessing.  I am so glad I saw the image on Facebook that gave me the idea to do it.  Thank goodness Showbiz Screen Printing could capture her look.  I will be doing orders again but you will have to come to the Spirits Studio to prepay.  I will not order extras and will not order ones that are not prepaid.  To everyone that has purchased a t-shirt, Thank You and I must say you look good wearing it!  We are taking orders until October 12th!

*Dirty Shirley’s thank you for making a special night for Crystal.  Think of all of the memories you helped others make that night in honor of Crystal.  Thank You Heather.  The money that was raised went to her hotel expenses for this last procedure.

*Crystal’s Lip Balms from Raining Rose.  They’re perfect and we only have about 60 left.  Thank you Cam for coming up with the idea.  For surprising us with such a thoughtful gift and then to sell them for our expenses while we are at Mayo.  As Crystal says, “These are nice lip balms, they don’t dry your lips out.  I am surprised how good it is”.  Thank you again Cam.

*My high school friends, what can I say, 30 years later and I am blessed to say that you are still in my life.  What a beautiful surprise to all go to Crystal’s home to say prayers.  Wearing purple, holding candles and if that is not enough you come with kind gifts.  You made her feel special, you made me feel even more special and I hope that you know if you need me, I am there.  I can still here your words Rachel but I don’t cry maybe because I have no more tears, I just smile because I feel blessed.  Thank you Rachel, Kris, Nicole, Barbie, Christine, Rita, Kelly, Lydia and Dan.

*BJ and Andrea you sure made Crystal and Gage smile with all of the dinners.  They loved them but they didn’t share lol

*And my dear friends Amy and Anthony.  I cherish our history, I think that is what makes our friendship even more special.  Thank you for raising two beautiful strong girls with kind hearts.  Alanna and Amyah for some reason Crystal’s Story has touched you both but I love even more how we each find strength from each other.  On another note, we are thrilled that we get to watch you on TV again this year. 

*To everyone from family, friends, neighbors, to the anonymous ones, your positive energy, prayers, cards and gifts have been felt and we can’t thank you enough.

As for the rest of the family,

Rodney just celebrated a birthday on August 29th.  As always he is working hard and would do anything for his family.  He actually plays on a Bocce Team and is doing really well.  He is in the Championships Friday night.  Go Rod!

Courtney loves her life.  She is enjoying being 23.  She loves her career, she loves clothes, she loves working out and I love her.  Courtney has enjoyed her year by going to many music concerts/festivals.  Actually, Rodney and I will be joining Courtney and Alec at the Justin Timberlake Concert at the end of this month.  Another memory maker coming up, I can’t wait.  I love Courtney’s spunk, I love how she has her opinion and is not afraid to say it.  Courtney plays volleyball on Thursday nights and I never seem to get there and get a photo, ugh.  But I bet Courtney is glad there are no photos being taken.

And Cassidy, she if doing well.  Such a heart she has.  Here is the post from FB.

Your first day of Kindergarten you were excited to be big like your sisters, you were happy to be doing something new, however you were nervous and scared too. Those butterflies in your tummy I’m sure started all over again on your first day of school this year…excuse me, I mean work. Congratulations Cassidy on the job you’ve been wanting for two years. I think the timing is right this time. God had a plan, he needed you to go out into the world a bit to see what it’s like, to learn from others, to find your path and helping people is what you enjoy the most. Funny, you always knew it. You have had a job since you were 16. You have learned that you are hard working, dependable, helpful, kind and organized. Those are huge things Cassidy and I think you are starting to see what positive qualities those are. You have met some wonderful people along the way and just like in school you have learned that their are many types of people. That’s how you learn, that is how you grow.
Prairie School District is lucky to have your kind heart. Because Cassidy this is what you are passionate about. You will be an incredible Paraprofessional. You will be ready to touch the lives of some of those students because you will remember the anxiety and bullies you have met along the way. I’m proud of you.
By the way, thank you for sending me a Snapchat of your first day so I could have a pic.

I end with a message I found….  “So far you’ve survived 100% of your worst days. You’re doing great.”

18 days later

Written Saturday, August 18th @ 5:00pm

I’ve mowed, finished up laundry, picked up the house and I’m thinking it is time to do an update. Crystal, Courtney and Cassidy had some special time this afternoon getting pedicures. Crystal said, “I love my toes and we had a great time mom”.

It has been one week since we were at the Iowa State Fair. The sun was out, there of course was a crowd of people, and it was hot. The CR Spirits were performing again this year, although Crystal had to watch and not perform. That is something that made her sad until one of our Li’l Spirits said, “I can’t wait for Crystal to watch us perform this year”. It’s funny how your attitude can change when you know you are making someone else happy.

We were lucky to get a wheelchair so she could enjoy the day, there were only a few times where Crystal had broken down. Besides the day being very hot which made you very sweaty, you learned that there are so many people that do not move for a wheelchair. Then you have the pain, the worry, and the emotions of feeling helpless, that together is what caused some emotions for her, for all of us.

But that very next day, I received a phone call from Crystal. “Mom, I feel really good. Like I am not even taking my pain meds, just Alieve this morning. I even went shopping for a bit. I feel so much better”. I was in shock, I mean just yesterday she was still touch and go. It was crazy, maybe the heat made her sweat it all out, I don’t know but I was so relieved. I was so happy, so exhausted and even asked her if she was kidding me. Crystal was ready to get back to her routine.

So this last week has been her best, yes she has her moments of discomfort, yes she does get tired fast, yes she is happy that she feels better and yes she worries of it coming back. She repeats constantly I don’t want to do this again.

Crystal believes that this recovery was her worst. It scares her to think about her future. I am not sure if any of you realized this, but Aretha Franklin who recently passed away, died from the same form of cancer PNET as Crystal is fighting. It has gotten a lot of attention from the Neuroendocrine fighters, survivors and caretakers.

So here we sit, summer is about over, school is just about to start up again, everyone’s schedules will begin to change and a lot of us are ready to get our new routines started. Thank you again, for the prayers, the messages, the thoughtful words, the stories, the gifts, your kindness and Cheers to everyone’s journey…

How is Crystal?

Written Wednesday, August 1st @ 2:30pm

I am sitting at the kitchen island in Crystal and Gage’s home.  “Storm” their beautiful cat has been waiting for me to go to another room so she can finally snuggle with her mom.  Let me just tell you, “Storm” is a perfect name for their cat.  You would think that their cat has no heart until you see her with Crystal.  Crystal is finally resting on the couch.

Well, I have not forgotten about all of the Crystal’s Prayer Warriors.  I have been overwhelmed and so has Crystal since we’ve been home.  First of all, thank you for the Anniversary Wishes.  Second, thank you for the prayers, cards, messages and thoughtful gifts for our daughter/family.  Now to your question on how Crystal is doing since she has been home?  I can tell you this, it has not been good.  It has been horrible.

Crystal got home late Saturday afternoon.  I can say we were all extremely tired.  Sleep was the first thing everyone wanted to do.  I left Crystal alone that evening.  We wanted Crystal and Gage to have that space as she settled home from surgery.  I was hoping by Sunday, when I checked on her things would be improving.  But what I learned from that call was she was not doing well.  Rod and I got to their home to help out and wanted to let Gage know that he sure can take a break if he needs it.  She is in a lot of pain.  A constant pain/ache.  At some moments she lets out a moan/scream.  She feels full, she can barely talk, she can barley breathe.  We stayed a while on Sunday and decided I would be back over with her Monday at 7:30am, when Gage would be leaving for work.

Monday was a horrible day.  I can’t describe it to you.  But when you are home and not in a hospital you question everything.  She is moaning in pain, your mind goes back to the very first surgery in 2013.  Those complications she had.  Then to the tumor by the aorta, they learned of another complication and now you wonder if there is something else wrong this time.  You also know the only way to find out is by a scan or blood work, something I can’t do at home.  Watching your child hurt, is heartbreaking.  Absolutely sickening.  You feel so helpless.  However, I did my best, I stayed positive and I asked God to help.  And funny, he did, he gave me strength.  Even if you yourself do not believe, I can at least tell you it sure feels better to feel like someone is listening, like you are not alone.  With that, my mother instincts came into play.  I did things I did while she was on chemo, I remembered tricks I did when she was little.  I focused on a new routine but still keeping one that was familiar.  As I helped her get ready for the day, something she was not really interested in, I explained how good it will feel brushing those teeth, taking that shower.  She listened, she did it and when she was done, she said that felt good.  As I was putting lotion on her.  My hands massaged her neck and shoulder, as I moved down to her arm I see something.  I look more closely and realize it is all black and blue, she was bruised.  There were so many pokes from IV’s and giving blood, that my heart sank seeing the reminders on her little arm.  She is so much stronger than me.

I told myself over and over, thank goodness they got the tumors and didn’t leave one behind.  All this pain and then knowing they left one in her liver would be even more difficult.  I would say to Crystal the pain is worth it not having those tumors.  It is keeping you alive.  And she would say, I don’t want to do it again mom.  So let us take a moment and think about that doctor.  That amazing doctor, who didn’t quit.  He had two surgeries that day.  Crystals in the morning and another one in the afternoon.  Crystals surgery lasted longer than expected.  When they told us he was working on the last tumor and it could be possibly another 45 minutes, well it ended up being about an hour and half longer not including he was already behind.  What I am saying is, he didn’t give up.  He didn’t say, I can’t find it but I tried, or I have another surgery scheduled so we can get it next time.  He didn’t say, we will watch it, keep an eye on it or we will wait for it to get a little bigger then get it.  He didn’t mention chemo or that we can try to get it next time.  He stayed patient, persistent and he continued to do his work with his God given talent.  Thank you.  Thank you.  And to the person that was after Crystal.  I did think of you and I did say a prayer for you, so did my mother.  I will never complain if something doesn’t start on time again, there is always a reason.  There is always another side.  And I am sure that other patient had no idea that he was even behind scheduled, he/she probably wondered why am I here so early.

After being with Crystal all day Monday, seeing the troubles she was having, we did call Mayo.  There was a concern that we may need to come back for a scan but to try somethings and see how the afternoon goes.  Running to the dance studio that evening, seeing Katelynn made me cry.  Seeing the parents in the studio made my heart race a little.  I knew I would be checking on Crystal later that evening and then after speaking a little with her family doctor, who has been a good friend.  I felt like we had a plan.   I would be back with Crystal on Tuesday morning.

In the middle of the night I woke and saw that I missed two phone calls 11:30pm & 12:30pm from Crystal, I was just sick.  I called her and she said, mom can you come here.  I was there by 12:45am.  Gage looked just as wiped.  He was trying just as hard to comfort her.  I told Gage, you have work in the morning go to sleep, I will stay.  I never left her side.

I finally got her to sleep maybe two hours and by then it was morning.  So I started the routine again.  This time I added a drive to grandmas for toast and a little coffee from Starbucks, something familiar.  Something that brought back happier times for us.  She got to visit with Bob, Bret and Michele which made her smile as Bret told some funny stories.  As she got in the car I grabbed her hand and squeezed it.  Crystal grabbed mine and never let it go, as I drove I held back some tears and then told her a little story.  I said when you were little you would be in your car seat.  In 1992 you could be up front.  When I would drive I would put my hand on your car seat and you would hold my hand as I drove.  You could only get your hand around two of my fingers.  I must admit it was still a hard day but I swear it was better than Monday.

As our routine continued through the day, she began to get worse.  The pain was becoming too much.  And then she says, “Mom, I don’t want you to go anywhere.  I feel better when you are here with me.  Will you stay here again.  And if you have to go home to do some stuff can I go with you”.  Her eyes were teary and as good as it felt to hear your 26 year daughter say that, it was also sad to hear it too.  I knew the pain was bad to want her mom.  It makes me cry typing that yet thankful that she finds peace with me.  See we always want mom, any age, I am 48 and am blessed to still have my mom.  Mom’s get it all.

As the night went on, Crystal wanted dad to come here too.  And then maybe dad can watch a movie with us.  Rod he is working so hard, then driving back and fourth from Mayo to work.  The worry he keeps to himself as he tries to be strong.  Gage, how loving to let her family come into their home and help.  Very good men.

Now it is about 10pm Tuesday night, it is not good.  I am exhausted, Rod has gone home to get ready for tomorrow, Gage is trying to figure out what we should be doing and I am running on no sleep.  Then it dawns on me, when she was little I would take her for a ride, that morning I took her for a ride.  So that was it.  I was taking her for a ride.  I gave Crystal her pain medicine, grabbed her blanket and pillow and said we are going for a car ride.  Gage said really, do you need some rockstars?  I am like I probably do but when she was little even her sisters, I knew a car ride would put them to sleep.  Gage had work just like Rod, it is better to have someone with sleep.  So off we went, Crystal and I left the drive at 10:30pm, she was out by 10:35pm.  I drove to Marion, Alburnett, Center Point back through Cedar Rapids.  As she slept.  It was peaceful, the moon was pretty, I talked to God.  When we got back to her home, she walked to the couch, the pain was still there however she was relaxed and fell right back to sleep until the pain started again about 3:30am.  Gave her dosage and off to sleep again.  I believe Crystal got 8 hours of sleep last night.  It is probably not the best sleep but it is sleep.

Today, Wednesday, August 1st she has improved.  We are doing our new routine for the day.  Another drive to grandmas to see everyone and have some toast.  Yes, still pain, baby steps but better.  She has talked more today, she even grabbed her cell phone.  We even walked into Target where I saw Emily and couldn’t help but to cry, I told Crystal I am sorry she said it’s okay mom go ahead and cry.  Crystal even showed Ivy, Emily’s daughter her stomach.  As we say our goodbyes, Ivy says, thank you crystal for showing me your tummy.

Crystal now rests, still wants mom to go nowhere and that is a blessing that I truly love.

Some of you have asked about her sisters, Courtney and Cassidy have been wonderful.  The three of them have a bond.  They need each other.  However, I do worry about them, about them thinking I love Crystal more.  But that is not true, I could never imagine loving one child more than the other.  Yes, they all have different personalities but that is exactly what our family needs.  Thank you all for loving our family.

A funny story in the hospital, there was a gentlemen on the same floor as Crystal.  He was older.  He was grumpy.  You could hear him.  He would yell.  I don’t want to give him to much attention but he made you feel sorry for the nurses.  The rudeness of people.  As I was rubbing Crystal’s back, it was just her and I at the time in the room, you could hear him yelling.  He was so rude, then Crystal says, “Mom shut my door, I do not need that negative energy in my room”.  That is right, stay away from it, that is what Crystal has taught me.

We are home.

Written Saturday, July 28th @ 4:45pm

Today we walked out of the doors at the Mayo Clinic Hospital, Saint Mary’s Campus. 28 years ago we were walking out of the church doors after saying, I do. Both photos we are happy, one of them we are looking our best and ready for our new journey, the other photo…we are exhausted. Trusting God, trusting this path. Happy “Golden” Anniversary Rod. 28 years on the 28th of July. And what a beautiful gift to bring our daughter home.

#happyanniversary #goldenanniversary #28years #lifeisajourney @ Mayo Clinic Hospital, Saint Marys Campus

 

She is staying another extra night…

Written Friday, July 27th @ 1:30pm

Crystal looks so peaceful right now as I sit next her. I tucked her in, tickled her arms until she fell asleep and now I’m playing catch up to all your messages. Crystal will be staying another extra night at the hospital as we try to get her pain under control.
Today, Crystal did get up and walk… She stared out the window. She doesn’t say much, it hurts to talk, to eat, to smile. She has made remarks that she never wants to do this again.
Rod has gone home to work for a day and will come back tonight. Cassidy came up yesterday ready to do anything for her sister, Courtney surprised us this morning with help from Cassidy. My mom, Shari has not left and Gage has been a phenomenal husband💜

 

Surgery is over.

Written Wednesday, July 25th at 5:20pm

As we walk into Crystals hospital room after surgery, she lays there so still. It looks like she is barely breathing. It’s actually difficult as mother to watch her lay there like that. I could feel my tears.  You can see the pain in her face even with her eyes closed. Little smirks when we ask a question. Even a little nod.  But really after a surgery, you want it quiet. You don’t want to talk, you want to rest. We hung her poster for her doctors and nurses to sign and went to the waiting room.

I had to go back to the room real quick, to see the doctors name on the board. As I quietly walk into the room. I see her eyes open. She says mom I need water. She looks sad, she looks like she is gonna cry but she takes her drink. I ask her if she needs me to stay, she says no, can you shut the door. I slip out of the room with a few tears.

We meet with the medicine doctor on the floor this evening. There is a concern with her kidneys with the dye still in it, they will work all night to flush it out to make sure there is no problem with the kidneys. So please pray for that. Please pray for her pain to go away.

But now for the other side, the moment Doctor Schmit and his nurse come to talk with us after her long surgery. I can see at the other end of the waiting room he is walking towards us, I think he is smiling. Dr. Schmit begins to tells us he has done many ablations in his life but this one was the most difficult one he has done in a year.  He apologized for how long it took. The first tumor was easy but the others were difficult. After more time with a doctor that didn’t give up , he got them. He got all of them!!!  And the one that is questionable, he has disregarded. We were all shocked, happy and listening to everything so closely. Crystal has her team as the doctors have theirs.

She is going to be in pain for awhile. It is going to be a long road. But with prayers, positive people surrounding her & goals ahead of her, she will be just fine. We’ve got this! 

God is good. Thank you all for your support. Now I need just a little time to myself….

She is in Surgery…

Written Wednesday, July 25th @ 9:00am

We sit in a large waiting room, there is only one other family in here.  I’m a little chilled, thank goodness I brought a cardigan.  I feel exhausted, my eyes are heavy and I’m thinking I need to get a coffee.  Rod is playing games on his phone, Gage is picking out new phone case for Crystal, my mom is writing thank you’s from her thoughtful gifts she received and I am thinking I need to do a little update before that coffee.

We had to be at St. Mary’s this morning at 5:30am.  I can tell you Crystal has had a good morning.  Yes, she is nervous but the same kind of nervous before a surgery.  We are also the same kind of nervous too.  Crystal has smiled and laughed, we actually all laughed this morning for about 45 minutes.  So I guess we can say it’s been a good morning.

Yesterday was long.  Very Very long.  We left our hotel at 5:45am. Tests began at 6:15am. Crystal finished her MRI, blood work, the New Nuclear Medicine Pet MRI Scan…which scared her to death.  She doesn’t want to do that one again. She said she about cried & had to stop. Crystal had to lay there as they took this big fat tube filled with nuclear radioactive stuff and injected it into her arm.  It was very uncomfortable, it hurt going in she explained. Then she had to relax and sit in the dark for about an hour.  Before going into the machine she had to put on this huge helmet, laid strapped down, with a help button in her hand.  She could not move at all, as they slowly moved her into the MRI Machine for 45 minuets and then another scan for 35 minuets. She said she did good for about the first 20 minutes, then she got an itch on her face and realized she really couldn’t get it.  It was taking her breath trying to wrinkle up her nose, the tears came, the worry came and then she talked to herself, she calmed herself down.

Crystal finally got to eat a bagel around 4pm. Crystal’s Surgical Team meeting was about 4:30pm. And our meeting with her doctors at 5:30pm. It was 6:30pm when we finally got some dinner.

We learned that the Dodatate Pet Scan worked for her type of tumors. With that being said, we have of course the two tumors from the last MRI that they can see, but we have found two new ones, with one of them being just as big as the other tumors from the previous scan. What is scary, is that they can’t say if it has grown that large in less than a month or if it just didn’t show up on that last scan? There is also a questionable lesion that they will be looking at closer today.

Our doctors are confident, we are confident.  But that doesn’t mean that mom, doesn’t cry and worry.

As for the love we are receiving, it is wonderful.  It is beautiful.  I have received a few messages that have touched my heart.  I have asked God do really deserve all of this support?  I have found myself looking around Mayo, feeling guilty that we have so many people that care, that are reaching out, that are taking the time to share their feelings.  I wondered, if others here that are sick had the same uplifting people in their lives.

As we walked over to the hospital this morning, I made a remark to Gage about when Crystal was first diagnosed. I was telling him that she had a fundraiser, a Dance-A-Thon.  I had to speak at it, I was scared and nervous.  I was happy and sad all at the same time.  It was humbling I told him and I explained how I was telling the crowd of people how it could be worse.  That it was horrible, shocking and sad what we were going through but it could be so much worse.  Crystal is still here with us, she was not taken suddenly or by a car accident or by someone who had taken her to harm her.  I knew where she was, she was with me.  I couldn’t imagine not knowing where she was.  I couldn’t imagine how a parent would feel not knowing.  I don’t think I could handle that.  So I will take this battle over that one.  The crazy thing about that remark was the next day they found those three women who were kept captive.  I believe they were missing for about 10 years.  So many of you from that Dance-A-Thon reached out.  They couldn’t believe I had just spoke something about that.  I must admit it did give me goosebumps.  And now today, we have a girl, a young beautiful girl missing from Iowa, Mollie Tibbetts.  It breaks my heart for her parents, her family, her friends.  I can’t even begin to feel the pain they feel.  It makes me sick to my stomach.  So I will take the prayers we are getting for my daughter and I will ask God to listen to them and if you need some more for Mollie, I know our family will share.

A big week.

Written on Monday July 23rd @ 7:45am

I sit here in the peace and quiet.  No kids, no music, no television.  No talking, no dog wanting my attention and I am packed ready to leave.  I am thinking of everything I want to get off my chest, what I need to say, and it overwhelms me.  I am looking at the most beautiful yellow roses from my dear friend Shannon.  I reread a beautiful card our sweet neighbor Michele wrote.  I stare at the paperwork from the “Crystal T-Shirts” and I am thinking, over 200 people will be wearing them Wednesday.  Such a blessing.

I can tell you July has been a busy month.  We celebrated the 4th of July, went to dinner with some dear friends, went to Uptown Friday Night, had a birthday celebration for Rod’s dad turning 80.  Then it was time to wish Crystal & Gage a happy 2 years before they headed off to Maine for their vacation.  Gave Courtney and Alec hugs before they were off to Nashville.  My nephew Colby turned 20.  We had parades, we had fairs, tractor pulls, and awesome concerts.  And then my beautiful mom finally retired from Coe College.  Yes, we stayed busy.  Very busy.

A lot of you are asking when her surgery is.  Here is a little info.  We leave for Mayo Monday, today.  She will have testing all day Tuesday.  She will be very hungry with having to stop eating early this evening because her tests start at 6am and I believe she will get to eat after 4pm, then meeting with her surgical team and her doctors.  Surgery is scheduled for Wednesday.  So if you are looking for a day to wear purple, zebra or one of Crystal’s Fighting Shirts…Then that is the day.

Some of you are seeing some fundraisers on FB.  Yes, they are legit.  Thank you for asking.

We had a few moms in our studio get together and do a Go Fund Me Page.  I must admit, it was difficult to think about all of this again. It is humbling, exhausting, and it is very hard to just say Thank You.  It was very hard to read what they wrote as well.

I also have a good friend who owns Dirty Shirley’s (88 16th Avenue SW, Cedar Rapids) and is doing a benefit for the day.  10% of all proceeds from the day will go to Crystal.  They will all be wearing her shirts, so please stop in and have a drink, don’t forget to take a pic too.  And this big day, will be the day of her surgery… Wednesday!  Again, Thank You.

As for the t-shirts, we sold over 200, that will be taking care of the hotel expenses, gas, food for this trip and possible the next one too!  Thank YOU ALL!

As I was talking with a friend, telling them how I felt with everything going on.  Discussing the fundraising that is happening and how I just feel so weird with it all.  I can’t even describe it.  But that friend made it clear to me to embrace it.  To say Thank You and that is it, because people do care and want to help.  I really needed to hear that, it help me just let go and put it in God’s hands.

Now how is mom doing?  It has been very difficult.  She has been on vacation so I think with her being gone, made it hard for me to stay strong.  Also, with her t-shirt sales I got to visit with a lot of people that are her prayer warriors.  So lots of wonderful vibes, yet many tears.  Not including, she got her news and then we wait before we could do anything, that seemed so hard this time.

Now how is the family holding up?  I think we do good as a family.  I think we are positive.  We keep busy.

How is Crystal?  Well, she looks great.  She is smiling.  She is busy.  I am not sure if I told you all but for Easter we had gotten our family tickets to Kid Rock.  Never dreamed it would be the last big night out before Crystals big week.  So Saturday we are all smiles, having a great night, and then right before Kid Rock comes out… Crystal, standing next to me, says hey mom, I have been wanting to tell you that since our trip I have been sick.  I have some pain in my abdominal area and I get very nauseas when I eat or drink anything.  I feel it might be the cancer.  Gage has been wanting me to tell you but I also didn’t want to worry you since I was gone.  Anyway, I am glad that I am going to Mayo this week.  Then she walked over to stand next to Gage.  Yep, my heart broke.  I didn’t want to ruin anyone else’s night.  I just sat there taking it in.  I saw Rachel who is on my dance team and quietly said something to her so I could get it off my chest and then boom the concert began and I asked God to get me through the night.  As for Kid Rock, thank you for taking me away for a couple of hours and a fun ride home talking about how great of a night it was.

As for yesterday, my mother had a little surprise at a luncheon we did for Crystal.  I didn’t want to ignore that my mom had retired.  Needless to say, it was perfect.  In Crystal’s words, I loved watching grandma & Bob.  They were so shocked and it made them so happy.  I loved it.  They deserved it for everything they have done for us.  Well said Crystal.  It is amazing what a bunch of cards in the mail can do to put a smile on someones face.  Maybe that is it, today we should all send a card in the mail to someone we are thinking about.  After you put that stamp on it, you smile too.

Happy 4th of July

Written on Tuesday, July 3rd @ 2:45pm

It sure is hot outside today so I think I will sit in the air conditioning an answer a few of your questions.

Question 1:  Yes, Rod and I had a nice get away with my uncle and aunt.  While we were away, it was difficult to receive a text from Crystal who was still not feeling the best.  She was heading to the doctors to hopefully get a antibiotic.  Of course I continued to check on her while we were gone.  When she started to feel better, I was so relieved.  The day before we were to come home we chatted on the phone about how she was feeling, how her sisters were doing, work and the Freedom Festival Parade coming up.  After that phone call I received a text, “Mom, I hope you guys are having a great trip!  I didn’t even ask how it was going.  Sorry.  I just hate that my cancer is back. I am probably more sad then sick.”  That is a hard text to get when you’re away.

When we were coming home, Crystal made a remark that there would be only two Uptown Friday Nights that she might be able to do.  One being that Friday night and she would like to go.  I said isn’t really hot and humid there, as I am getting on the plane?  She didn’t care about that, she wanted to go.  So, off the plane and onto Uptown we went.  Gotta enjoy those special times.

Question 2:  Yes, Crystal is still dancing.  You would not know that her cancer is back.  She has been sick a lot this year but just like all of us can be with a cold, bronchitis, walking pneumonia, that is what is so sad about cancer, sometimes you are sick and you don’t know.  But dance, takes her away from the worries for a moment.  She loves it, just like her mom.  I think I have stated this before, that this dream that I started 25 years ago, must of been for her and I had no idea.  All along I thought it was just my journey.  When Crystal is feeling blue those students make her smile.  Here is a couple of little stories.

Story 1:  At the counter, a Tiny Spirit states, I like your zebra (which sits behind the desk).  Crystal explains, well that is my type of cancer.  And that 7 year old goes, so you got bit by a zebra and now you have zebra cancer?  Crystal said to me, Mom, I think that mother was horrified but it actually made my night.

Story 2:  In class a Tiny Spirit says, my mom & I got into a fight.  I am not talking to her right now.  Crystal says, well I get into arguments with my mom too.  That little girl looks at Crystal and states, well you and your mom live in this big apartment so you can get away from each other (Big apartment, meaning the dance studio in Lindale Mall, thinking we live there?).  hehehe

Question 3:  Not sure yet where the Studio will be next year.  Since I am celebrating 25 years of the CR Spirits Professional Dance Team & Studio I have been thinking of changing it up.  The goal was to let Crystal run with it, but she has no desire if I am not involved.  We came up with an idea before her big appointment and now that has changed everything.  So at this time I wait, I look for signs and I ask God for guidance.  I love this job.  I have been fortunate enough to have been given this gift to dance, choreograph, travel, meet others, build women up, surround myself, my family, my studio with wonderful opportunities and in the end prayer warriors.  It is nerve racking to change a path that you only know.  It is scary as you get older to try something new.  It is even more heartbreaking, to make a change when your daughter who fights for her life doesn’t want it to go anywhere because she believes strongly, it has helped her fight this battle.  So again, I will wait for a path to show up…

Question 4:  The t-shirts we sold will be going towards the hotel stay, food, gas whatever little things come up.  These last two years have been a miracle.  Crystal, Gage, Rod and I try to split the travel costs up as families.  Crystal has been fortunate that the cancer has stayed away and her $7000 every appointment costs have been covered by insurance.

However, this one will be different.  Not only is there a surgery involved, but lots of testing, including this new scan that costs around $20,000.  Insurance struggles with covering it because it is a new type of scan, I believe.  Yes, yes, the doctors will request it and we will fight it but it is still a worry.  When Crystal had learned of this, the guilt set in.  Gage works hard, she would be needing so much money.  She turns to me and says, “Mom that is too much money.  Like I am going to have to see if insurance is going to cover this.”  It broke my heart.  I immediately said your dad and I will take care of it, we will figure it out, you will do that scan if they want you too.  You know, that is one thing that was good about her being younger and not married.  We didn’t give her a choice, she didn’t have to worry.  She just had to fight.  Anyway, Crystal made many long phone calls, she has learned that if it doesn’t cover she will be responsible for at least $9200 for that scan and of course whatever else might come up.

With that being said, we will be selling t-shirts again.  They’re $20 each, we would like to place the order by Thursday, July 12th so they would be back in time for her big week.

Question 5:  I enjoy staying busy.  I enjoy people.  I get my energy from others.  Yes, it can be tiring and when I need it, I rest.  We are close to our daughters and their friends, that truly is a blessing.  I feel lucky.  

You know it is funny.  You have children.  You think that when they are 18 you are done raising them.  Once you get them out of high school, you can say I did it and I am done.  Actually I think there are a lot of people out there that do do that.  I think there are a lot people out there, that have children for a paycheck.  Having children and raising them are two different things.  It is exhausting to repeat yourself, it is exhausting to remind them constantly of things you don’t agree with.  It is exhausting being a good parent.  Anyway that is another topic.  But my mother would say to me, when you have them you will always have a worry for the rest of your life.  You know I would blow her off because I truly didn’t get it, I wanted a family.  I seriously was so young.  And trust me, that worry is real.  I never want my daughters to loose touch of how close they are.  I worry of their health, their careers, their relationships.  I worry of them being bullied, talked about, lied to.  I worry of them walking to their cars.  A mother’s worry never ends no matter what age.  Ugh  Last night at dance, Crystal says to Katelynn and I, as we were chatting way past dance class.  You know what gives me stress, a lot of stress besides cancer?  Worrying about my sisters.  I hate what goes on in their neighborhoods.  I find myself driving by their homes to make sure they are safe.  I sat in Courtney’s parking lot one night.  I feel like I am always worrying about them, what they’re doing and how they act.  And as I drove home, I thought I never knew she worried that much about her sisters.  A sisters worry.  We raised them right.  They’re close to each other.  I guess that is love.  And we all want to be loved.  We all want to feel love.  And love can be so exhausting.  Unconditional love is the most beautiful thing and can also be the most heartbreaking thing.  

I hope you have a wonderful 4th of July.  Land of the Free, Home the Brave.  Thank you to all who are and have served.

Here we go again…

Written on Tuesday, June 19th @ 10:50pm

It was a raining day here in Iowa.  I thought sometime today would be a good time to update Crystal’s Story.  I can’t believe it has been almost three months since I last updated you all.  So much has been going on.  Whomever is reading this, just think what you have done in the last three months of your life.  What holidays, birthdays, good times, sad times, your everyday worries, that have occurred these last few months.  Life sure is a journey for all of us.

Let’s see, we have celebrated Easter, Courtney turning 23, a Spirits Team Bonding Event with their Mothers (precious), Cassidy buying herself a new vehicle, Spirits Photo Shoot, our little dog Calvin passing away, graduation parties, Crystal’s 26th Birthday (reminder they said she wouldn’t be here at 23), Mother’s Day, a Spirits Vegas Trip, Memorial Day Weekend, the Taylor Swift Concert in Chicago and Father’s Day.

Reviewing what I just typed, goodness the memories we’ve made.  The life we are choosing to live.  I can tell you there has been some happy times, some laughter, some tears, some anger and it was even exhausting at times in those events I just shared with you.  But when you think back to all of those emotions, I can say we are living life to the fullest.

Here is a little info about the Spirits Photo Shoot in May.  When you look at the all pictures over the last 25 years of the CR Spirits, each picture/poster/calendar can tell a story.  To the public, it looks simple.  A bunch of women, who are smiling, loving what they do and feeling confident for the pictures that will be given to the public.  But in reality, their are many stories with these women.  Taking a picture you may think is easy but it sure can be hard when life is throwing you a curve.  Crystal’s picture this year was a difficult shoot.  She was very sick and struggling with breathing.  It was heart breaking watching her smile all the while thinking the cancer was back.  It took every ounce of her strength to breathe.  But she would not change the date, she would not want to break the schedule, she would not cancel without trying it first…The next day after a doctor visit and a scan we learned she had walking Pneumonia.  Yes, horrible for her and her immune system but so happy that it was that and not cancer.  Again, a reminder for all of us to live life and push through those hard times.

The crazy thing about that story, is Crystal was so miserable when she was sick and it was shortly after feeling better that our little fur family member was struggling with breathing.  It was Crystal that said mom, he is struggling.  He needs help now.  I know how he is feeling, he needs to go to the hospital.  Crystal was right.  It wasn’t that I didn’t notice but he was fine earlier that evening.  It happened so fast.  It was an awful time for our family.  Actually there still are days that I miss him terribly.  You know that evening, I started to cry immediately when Crystal said, mom he is struggling.  The minute I started to cry and Crystal too, we could see Calvin trying to open his eyes to comfort us, and his breathing was so labored.  Just typing this breaks my heart.  He was the perfect little guy for our family.

Onto our hero, Crystal’s next Mayo Appointment is Thursday, June 21st with results on Friday, June 22nd.  We sure would take those prayers, those positive vibes, those beautiful heartfelt messages.  We appreciate you and we need you.

Crystal, Gage and I will be leaving for Mayo on Thursday.  Rod, Courtney & Cassidy will be with us in Spirit.

On Friday of last week, Crystal and Cassidy took me to Olive Garden, Courtney was in Chicago or she would have been there too.  As we wait for our second bowl of salad to come to the table, Crystal mentions that she would like to talk to me about something that she needs to say.  I immediately thought, maybe she wanted just Gage and her to go to Mayo?  As Cassidy watched me, Crystal begins to explain.

“So mom, on Thursday lets say we get to Mayo, my tests run smooth, we go to dinner and then the Farmers Market there.  The next day we go to the doctors visit and everything is good.  Like they don’t find anything.  Wouldn’t that be great!?  And then we could go to the Spirits Team Bonding that night all happy”.

I was like, “Yes I think that would be just perfect”.  Again, I am trying to figure out where she is going with this.  My stomach is getting a little nervous.  Cassidy continues staring and not saying a word.

Then Crystal says, “Now mom, let’s pretend that everything goes good Thursday but then in the doctors office the next day they say, that they see something.  Like it is back.  They are probably going to try to do another test if they can get it in on Friday.  However, a biopsy or anything else would probably get done the following week.  I wouldn’t want to wait.  And mom, you will be out of town”. 

I immediately get sick to my stomach.  I forgot that we would be gone.  I explain that I can cancel that trip with no problems.

Crystal says, “No mom.  I don’t want you to cancel that trip.  As much as I would want you there, I would have guilt of you being there.  I happily married, Gage will be with me.  I want you to go on the trip.  That is it.”  Cassidy then adds, “That is right mom.  And if she needs me, I will go with them too”.

Of course, the mother in me states that we can make this decision  when we get the news.  Crystal says, “No mom.  I don’t want to go over this in the doctors office with all the emotions.  It’s important that we have a plan.  You know that.  So that’s it.  You go on the trip and you have fun.”

Needless to say, she is right.  It is what I have told her for the last five years.  But goodness she is not a mom and she is now 26 telling me what I am going to do, how could I have fun?  Yep, I was very sick to my stomach, I didn’t eat salad I got breadsticks and dumped them into ranch dressing.  Yes, I am emotionally eater.  I did meet up with some friends that took my mind off of the topic which was nice.  Rod and I are proud of her planning out her steps as difficult as it can be.

On another note, some of you have seen the “new” Crystal T-Shirts.  Yes, we only have a couple left.  I actually got the idea from Facebook but changed “Rosie the Riveter” to our “Crystal”.

Thank you again in advance for the love. 

A bump in the road…

Written on Sunday, June 24th @ 2:30pm

It is a sunny day here in Iowa.  It’s a day of getting the house picked up, getting laundry done while Rod is outside working. I have some music on, the Goo Goo Dolls.  I’m missing my Calvin, who is usually snuggled up against me when I write these updates.  Instead I have a cold glass of water next to me, as I’m looking out the window at the bird feeder watching the Squirrel enjoying it a little more today than usual.  I sit here and think to myself, how to do update with a positive spin.

The ride to Mayo, was a raining one.  As I drove, Crystal sat up front with me and Gage in the back.  The music, of course was on and we knew that there was some road construction coming up, so we were going to take a different route.  I didn’t write about it in the last update but Crystal is fighting a bad cold.  She actually has been sick a lot this last year so trying to keep her Spirits up when she is already not feeling good can be difficult.  However, I love that the three of us get along and can chat about anything.

We arrived at Mayo, it was cold and rainy but after checking into our hotel we knew we would be pretty much inside all day.  All her tests went smooth.  However, she did get to peek at her blood work and we could see that a couple of the tests were off, which of course made you start thinking, what if???

Mayo, has made some changes.  They have a new computer system, a new PA system and a new way to check in at each appointment.  I am sure using that computer screen to check in can be very nerve racking to someone who is much older and not familiar with the computers but they make sure the old way still is available.  I sure like it there.  I like the people, kind, helpful and classy.

Friday morning, we ate a little breakfast and off to the Gonda Building at Mayo.  10th Floor here we come.  We were planning what we would do after the appointment.  For five years, there is a little winery called Four Daughters that I have always wanted to stop at.  So we thought we would go there for lunch before we headed home.

Of course, we sat in the doctors office the exact same way.  We made small talk and laughed at Gage with his little remarks as we waited for the doctors to come in.  We could hear some talking in the hallway, so you stay quiet to see if you think they are taking about Crystal and you’re going learn something before they come in but that is never the case.  You never understand what they are even saying out in the hallway.  The minute the door opens, you are looking for a sign.  And this time, the questions they immediately asked, I got a funny feeling.

Yes, two tumors are in her liver that they can see.  They are in the upper lobe of her liver, so a different location.  One of them is much larger then what I’ve seen before.  There is also two nodules by her lungs, at this time they are just watching them.  They are not sure what those are.  It is crazy that in 5 months this is what shows up.  It’s scary.

How did we react?  Crystal was quiet, taking it in and in shock.  Gage was positive, thinking of a plan and supportive.  Mom, I let out tears.  I started to cry.  I couldn’t help it.  And when Crystal’s little head turned towards me and those eyes met mine.  I told her I was sorry, as we both reached for the Kleenex.  I felt bad that she saw me cry.  I didn’t want to hear that news.  And the selfish side of me, didn’t want to do this again.  I am not even the one who is fighting.  I hate cancer.

Why does this happen?  Why her?  Why my family?  Why?  Why?  Why?  Another reminder, we are not in charge of our path.  A reminder to me, she is terminally ill.  She has a chronic illness.  They have said it to us over and over, it’s just that you easily forget when she have been doing so well for the last two years.  And then you immediately thank God for the last two wonderful years.  It’s exhausting.

We learn that her surgery will be approximately 8 hours, she will also be doing a new type of scan and all of that will be taking place the last week in July. 

As we begin our drive home, we have a very busy weekend planned.  I do my best to stay focused on the busy weekend and what I need to get done keeps replaying in my head.  As we get closer to the winery, Gage mentions are we going to stop?  I state we really don’t need to.  Crystal remarks she is not hungry.  Gage says lets just stop to see it, your mom has always wanted too.  So I pulled in.  Needless to say, we bought some goodies.  And loved it there.  Gage was so kind, knowing that the last week of July Rod and I will be celebrating our “Golden” Anniversary, so he remarks maybe Rod and you could come here for dinner while I sit with Crystal at the hospital.  So kind of him to think of that.  Our anniversary is not until the 28th, hopefully we will be home by then.  And I am thinking to myself, my mother is retiring the end of July and she will be watching her granddaughter fight again.  Isn’t life a ride?

I know a lot of you don’t have social media, or maybe we are not friends on social media.  I usually post on that, so that is how some people already had the news.  I received a couple of messages on that, where someone was thinking it was a rumor.  It was just that I had made a post and had not had the time to update her story.

On another note, we had a very busy weekend planned.  I must admit.  I had no desire to do any of it.  Same with Crystal.  But keeping busy, staying around positive people is good for the soul.  That by the end of the night, Crystal and I said I am so glad we had something to do.  Funny how that works.  How uplifting that can be.

We had a Spirits Team Bonding event Friday evening.  Once we got there, it was a blast.  You forget how many people do follow her story on social media, so you found FB friends coming up to you saying prayers, you’re an inspiration, you’ve got this,  which is such a blessing to hear but tearful at the same time especially when it is a night out.  We chose later that evening to go to Kaitlin’s home vs anywhere else so you could get a break from it.

Then Saturday, was a fun filled waterpark day and fireworks with family.  So today, I am exhausted.  With the worry before the appointment, the tears at the appointment and all of the events going on, I am definitely looking forward to getting away.  Which brings me to another blessing.  I am going on my vacation and I will not be missing anything.  Crystal and Gage will get to go on their big vacation in July and will live every moment of it to its fullest.  We will all get to go to the concert at the Great Jones County Fair as a family before that last week of July.  So see, I found a positive spin.

You know I get a lot of messages or remarks about how much you love our family.  Or how you wish you had a family like ours.  I even get, I wish I had a great marriage like yours.  I usually don’t say anything unless you know me personally but I can tell you it is work.  It is sacrificing on both sides.  I choose not to write about negative things all the time, I choose to look for the good and ignore the gossip but that does not mean it is a piece of cake.  It doesn’t mean I found my soulmate and we don’t fight.  It doesn’t mean my daughters are perfect.  It doesn’t mean we don’t make mistakes.  It means that you look for the good.  You think of your future and push through.  Yes live in the moment but the choices you make will determine your future.  You ask God to give you strength and then you do the hardest part.  You wait.  You give it time.  You trust him, even if you think he is wrong.  You forgive, I didn’t say forget, I said forgive. I try hard to not be around people that bring me down.  I remind myself that you can’t compete with gossip and liars.  I tell myself if they do it with you, they will do it to you.  And everything that is worth it, takes work.  Did I think I would be married 28 years?  Sure when I said my vows but life gets in the way and trying to focus and figure out that path is hard.  Life is not easy but I sure would not want to be anywhere else at this time in my life.  God knows my family needs me and at the end, hopefully it inspires others to think.

Crystal’s “New” Birthday, 5 years later…

Written on Monday, March 26th @ 11:30pm

I lay here in bed watching reruns of “The Kings of Queens” while Calvin is snuggled up against me. Oh how that little dog can make me happy. I am drinking some water and eating a Reese’s Peanut Butter Egg (my favorite) or should I say, I am eating two. I can’t believe it’s almost Easter. WoW, how fast this year has been going. I swear it was just Christmas, and the big gift to the P!NK Concert was so far away. And look, it’s already over but boy what memories we made.

I found myself at that P!NK Concert emotional watching my girls laugh, smile, sing and cry. She sang a song from the past as Cassidy said, “I remember this song, I was in a car seat”. I thanked God over and over for that gift. That gift of time with them. I am happy that I notice that time, is a gift. Oh and P!NK, she is incredible, a must see.

How has Crystal been doing? Is the question I’ve been asked a lot lately. Crystal is doing really well. We have had no worries, her smile is still on her face and she still has the upbeat attitude. The next big question, when does she go back to Mayo? She will be going back in June, just don’t know the date at this time.

As I watched Crystal explain to some friends recently, “I am terminally ill but I am doing really well and in April of this year, it will be two years that my cancer has not come back! I am a miracle.” And as her mother, she is a miracle, she is a fighter, she is an inspiration.

Well tomorrow is Crystal’s “New” Birthday. March 27th will be a day I will never forget. A day that we got news that changed our lives forever. I cried so hard. I felt so lost. I remember Crystal just watching me and how I responded to everything. I actually can’t even believe I lived it. As we celebrate with her tomorrow we will reflect on that day 5 years ago. We will thank God again for being lucky to still have her with us.

With that being said…Our family recently has gone through a loss. A reminder to all of us how fast life can change. That saying, “Isn’t it scary knowing that any time could be the last time you talk to someone?” is such a true statement.

I had made a remark a couple of weeks ago at dance practice as we were chatting about team bondings & what would be coming up in April.
I explained that 2 years ago, it was Christmas time & I had come to the realization how blessed we were to be all together. Seriously 2 years ago at age 46. It wasn’t when my daughter was ill, it wasn’t because there was a death, it was just a feeling that came over me. I had looked around the family room and thought, were all here at Christmas. My family is very small, what would happen a year from now…would we all be together? It could change everything so fast. You think it could be my mom cause she is older, or my daughter who is fighting cancer, but no, it could be the middle daughter who drives on 80 Monday-Friday…
I told the team, just think about it. It really is a blessing, those moments, the people you love, it could be gone so fast.

What’s so heartbreaking is even though I said it, even though I can feel it. It sure is much harder when your living it.
To watch the ones you love hurt, to watch the strong men who are usually laughing, now crying, makes you cry. To think of how much change will happen this year for a family that was taken by surprise, makes you humble.

I’ve seen my husband in almost 28 years only cry 4 times.
I listened to my youngest daughter tell me, he taught me how to make a roast mom, “Don’t use baby carrots…Always use the ones you have to peel, they taste better”, she explained to me.
To hear my oldest daughter with a shaky voice, ask me how are Lee, Kaitlin, Trisha & Shane doing?
And my middle daughter says, I don’t get it mom, like why is he not going to the hospital? Broke my heart.

I can hear him smacking his hands together, rubbing them back and forth, as he says this is gonna be good. It’s funny what you will remember of someone that has crossed your path. What will people remember of you? What impression will you leave? Oh we know we can’t please everybody but I do say, treat others the way you would like to be treated but when that doesn’t work out, then treat others the way they treat you…that seems to work for me.

Please enjoy your holiday weekend with the ones you love. Embrace that time with them.

And here is a look back to five years ago…

~ Written March 27th, 2013 ~
After learning of the tumor in Crystal’s pancreas that spread to her liver.  Her family doctor made phone calls to the Mayo Clinic and got us in right away.  They were even shocked how fast they got her in.  Monday, April 1st was going to be the start of our journey to the Mayo Clinic.
Dr. Geodken and his team, including his office staff were comforting and supportive.  I feel they were taken back with Crystal’s prognosis.  Dr. Geodken was very open and honest.
He was also going to be writing a letter to our insurance since we had learned that it did not cover Mayo.
We made phone calls and began contacting the people that we see on a regular basis.  I must say that was extremely difficult.  The fears of the unknown.
We also met with an attorney to get Crystal’s medical and finances in order. I never thought I would be doing something like that at this age.

Bring on 2018!

Written on Tuesday, January 2nd @ 11pm

It’s a cold night in Iowa as I sit by the fireplace. My pj’s are on, the cozy slippers are working, a glass of cold water is in reach and little dog who wants to sit in my lap. I can’t believe it has been over 3 months since I last updated you on Crystal. I thought the new year would be a great time to share what she has been up to and how well she has been doing.

Plus, next Thursday, January 11th & Friday, January 12th we head to Mayo for her checkup so I thought this would be a great time to ask for prayers.

Now time to reflect on these last few months. Crazy how fast it has gone by, yet blessed to have had them. I felt guilty not updating you all on her journey but loved knowing that things were good and we could go back to a normal routine until the next big checkup.

Now let’s think back to what we have been doing. And maybe as you read about her life you can reflect on yours.

How was your Halloween? Crystal was a SuperHero, which we already know that she is one. Crystal was Wonder Woman! She had a great night, Crystal celebrated with family and friends. There is even a video of her dancing that night.

Shortly after that Crystal had not been feeling well and we learned that she had Bronchitis. The worry was it could change to pneumonia. The medicines and sleep began. With her asthma, bronchitis, headaches she thought, well might as well make an appointment with the dermatologist, something Gage and I have been wanting her to do for awhile now.

Surprisingly our dermatologist could get her in quickly. It was the Wednesday before Thanksgiving. I was suppose to go with Crystal and Gage but I thought, oh surely this would be an easy appointment. I asked Crystal if she wanted or needed me to go? I told her that I was sure it would be a quick appointment. Plus we love our doctor, so she would be in good hands. Crystal was completely fine with me not going, so I went with my mom while Crystal and Gage headed to the appointment.

See Crystal has long beautiful hair but for awhile now she has had a bald spot on the back of her head. You just can’t see it because of how long her hair is. And what was happening was it was growing, almost to the size of the palm of her hand. What she learned is with her immune system she has developed Alopecia. What I didn’t expect was the sound of her voice after her appointment. I knew she would call but I could tell she had been crying and was in shock.

I waited so patiently for her phone call since I knew what time the doctors visit was. So when she called and was like “Mom, I just got like 20 shots in my head. Cortisone shots, and a shot to make it stop the bleeding. It hurt so bad. Gage asked if he should hold my hand. I told him no because I think that would make me cry”. I first thought was she kidding, or exaggerating. But nope I learned that is what happened. Plus she would have to go back for more treatments in December and again in January after her Mayo appointment.

I couldn’t believe it. I didn’t go to that appointment, I never dreamed that is what they would do. But yet she was in good hands and her husband was right there with her. The next day was Thanksgiving and her father is one heck of a cook. Her head was much better and we had food to eat.

Now we are in December, the Christmas shopping has begun. You know what is really special about the Christmas Shopping this year? Is watching my daughters find gifts for others. Gage and Cassidy are very good at coming up with ideas, thoughtful ideas. To listen to the girls get excited about what they found for someone or how happy this person is going to be to open this gift from them, made me smile. It’s nice to see how kind they are to give to others. It make my heart feel happy.

Her little sister turned 21, we all headed to Vegas. I remember saying to Cassidy, saying to her sisters. This trip is a blessing. It is a blessing that we get to go. It is a blessing that your family is all together. It is a blessing to make these memories. You may never get this chance again. And just like that those four days flew by. But those moments will last forever.

We return from Vegas…Crystal gets ready for her next treatment for her head. More shots. I think about doing an update but then think, embrace the holidays.Christmas was wonderful. This year Rod and I thought we would do gifts that were experiences. I did a shopping day with them. They got to go into a The Buckle, pick out an outfit from head to toe. The three of them. They laughed. They smiled. They built each other up. Courtney was in her element, Crystal was excited and Cassidy was shy at first. Here is a video you can watch from that day https://youtu.be/YgZxSSayglw

And the big gift/experience…March 9th, 2013 Crystal, age 20 goes with me to Chicago for the P!NK Concert. It was heartbreaking watching her pretend she was feeling good since we had no idea what was going on with her health. April 9th, 2013 Crystal has a major surgery to being the process of beating Stage 4 Pancreatic Cancer, an aggressive form of Insulinoma Tumors. March 9th, 2018…5 years to the date. They said she wouldn’t be here but look she is. And, she will be going back with me to a P!NK concert! Only this time I’m taking her sisters with us!

New Years Eve, it was a cold one here in Iowa but we sure finished the year making memories.

Goodness, I must say I was reminded over the holidays of how fortunate we are to have Crystal still with us. I pray for the families that are suffering out there now and I do hear you. Cancer is ugly but it has also taught me to live, to stand up for myself. To embrace life. And trust me, somedays I forget to think like that but more importantly when I remember, I get back on that way of thinking.

Thank you again for all of the prayers and support. You have truly helped my family. Your faith, has helped grow mine.

A Thankful Heart

Written on Monday, January 16th @ 12:30pm

Oh yes it sure is a Happy New Year. What a perfect way to start off 2018.

Am I shocked? Sure, she is a miracle. Does that mean I am negative when we go? No, I am realistic. I’m prepared as much as I can be. Does Crystal think the way I do? Not the first time we went back to Mayo in the beginning. She had felt completely fine and the Cancer had come back, it was devastating and a shock to her. So now, mentally when we go to Mayo, she is prepared for her next steps whether the Cancer is back or not. As a mother, that can be heartbreaking at the same time to watch your daughter plan her life with the good and bad.

Our drive to Mayo was a little scary with the weather. Gage drove, which was nice for me but I felt bad for him. The last drive to Mayo, I drove. It was a scary foggy ride, my knuckles were white from hanging onto that steering wheel but Gage, he took it in stride and got us there and back home safely.

Her blood work, her scans all went to well. When she was getting ready to do her MRI, it was the first time, I asked her, if Gage and I could go get a coffee together and bring right back up. She was like mom, “I am fine. Yes, both of you can leave”. Well, I am just saying we have never left you alone here, like Gage will run and bring us back something to drink but this time, I thought we could go and come right back. She was like, “Mom, go”. So then Gage, said Crystal, “Is it okay if I go get something to drink”? hehehe I think she loves us and hates us at the same time.

The one thing that was a little different this time was Crystal would not look into her files. See when she gets her blood work done, we usually can peek at those before the doctor visit and even though we are not doctors, we always think if the blood work is good, that is a positive sign to start. This time she wanted nothing to do with looking at them prior. Which of course, I started thinking in my head, maybe she knows something is not right. Maybe she thinks it is back and doesn’t want to say anything. But I trusted her choice and waited with her.

Of course going into the waiting room, we are like following a mother duck. It never changes. The way we walk in, the way we sit, the worry, the scare. The room always looks the same, we try to come up with small talk, you listen to everything outside the room so closely. You can hear footsteps that you probably would never hear on a normal basis. However, this time we really could hear them because GAGE tapped his feet to the same walk as whomever was walking in the hallway. It was enough that even the nurse checking Crystal in laughed because we all thought it was that loud in the hallway and it here it was Gage. Laughter can sure break the tension.

When we learned that her blood work was good and her scans showed nothing new we were elated. I cried. Crystal cried. Gage was happy. The nurse said my word for you is “Fandarntastic”. So now she just had to do a body check. We are so happy, giggling and chatting, Crystal begins to talk about her, Alopecia. Explaining that she goes next week for more shots but it is looking better and feels better. When Crystal was then asked about her heart rate. If it has ever been irregular? Had anyone ever said that to her before. With that being said, we discussed how hard it is for her to breathe but we put that down as Asthma.

And then we are informed that her type of Cancer can locate to that area we will need to do another test.

I must say it killed the mood. But we thought the blood work was good. The last time she was here, everything had looked good. I guess if anything is there, it would have developed in the last few months and we will fight it or it will be nothing and you are getting doubled checked.

As we waited hours for the news so much went through our mind. As we told family the extra tests needed, you could tell they were like why, we’ve never heard of this before. Now her heart?

I must say I think I aged 10 years waiting for those results. But we got them and they were good. “Fandarntastic”!

Her next scans will be in June 2018. She will get to go the P!NK Concert Cancer FREE! Thank you Lord. Thank you for our challenges so remember how good we do have it.

“You have been assigned this mountain, so you can show others it can be moved” ~unknown

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.

She beat it again!

Written on Thursday, June 8th @ 9:50am

Our hearts are filled with joy. She is a miracle. She has beaten the odds. And I can’t thank you all enough for your prayers and your positive thoughts. Your stories that you have shared, the cards you have sent and the gifts you have given…We are blessed.

My morning started out beautifully, the weather is just perfect, the sun is beaming and I am receiving snap chat’s from Crystal. She is really not a morning person so I am thinking she is liking the late afternoon appointments the last two days. She is smiling, she is scared but she has a plan in her mind for good news and bad news.

The ride to Mayo is nice and with the weather being gorgeous, it makes the ride even better. To top it off, I thought I was going alone but Rod found way to break away.

My mom had sent me a text earlier that morning wishing safe travels, saying her prayers, she also reminded me that her mother has been gone for 38 long years ago today. When we learned about Crystal’s appointments and the dates. Knowing she was getting her news on this day, we felt it was a sign. We felt my grandmother was going to be our angel for the day and for all of us. I miss her too mom.

I was 9 years old when my grandmother passed. I kept reliving that day, that night as I drove to Mayo. I tried listening to the music and choreographing like usual but that wasn’t working. Then I would start thinking about Crystal and the news, good or bad. How we will handle it, which thinking about it made me sick so then I thought maybe I should chat with God and do some thanking. Ask for prayers for not only Crystal and my family but others that I know need them. But I found my mind wondering back to my grandmother again.

Now that I am older, I look at that day so different. I remember her putting on a black coat and never thought anything about it until now I think, wow it was June, was she cold? Wait she had her pajamas on, maybe that is why, just to cover up her pj’s. It was my brother and me home with her until my aunt came home from a softball game. I can still hear my aunt screaming when my grandmother collapsed in front of us. It took me years to get over her not being here anymore but there is one thing I do know. If I could visit with anyone today, it would be her. I know she is the reason I dance today. I know she is the one that has guided me.

As we arrive to Rochester, Crystal and Gage are full of smiles, they have found a place to eat. Which was amazing! And Courtney would love the decor! It was a Mexican restaurant “hefe rojo”. After that we walked to the Mayo building. I could already feel my heart racing but Gage is so funny, which really does help things go by. Gage is our entertainment. Rod, he is so quiet. Crystal and I, we keep smiling.

Sitting on that floor, I was wishing I had not eaten lunch. My tummy was starting to hurt, my heart was racing and I just wanted to know the news now.

Going back to the room and waiting again for her doctor is a long wait. We walked right into this little room just like always. Crystal sits, Gage then sits, I sit and then Rod. I was even thinking the last time I was not here and it was hard to wait but I had two friends pampering me as I waited which was nice. Hmmmmm I guess both ways is hard. Then you hear those footsteps and the door handle begins to move…it’s time.

This tall skinny doctor with his glasses on walks in the room. Smiling, happy to see Crystal, asking about her vacations, asking her about dancing and as I stared at him, I was thinking gosh could I tell if it was back or not in his eyes. He is one of her teams doctors and I have met him before. He is personable, nice looking and is just a surprised about her news as we are.

There are two spots in her liver that have not changed. They feel they are scars basically but they continue to watch them. Other than that they found no evidence of cancer.

I can’t even describe how I feel. It is such a relief. And then I hear Crystal’s words. “Mom, I really thought it was back. I guess I just thought things were so good and I know the odds are against me”. I hugged her so tight! She will be going back in September. Crystal gets to enjoy her summer being a Stage 4 Pancreatic Cancer Survivor!

Now let’s video your sisters since they are working to tell them the news. By the way, we did post the short clip but it is on Facebook even though it was only suppose to be for her sisters. And just so you know, I did not care for that video of me. My daughter loved it and said, “Mom, get some confidence, you look fine and I look cute! I just beat cancer, post it so everyone knows the news.” Gotta love the younger generation they keep you on your toes.

I thought I would post some facts about Pancreatic Cancer so you can see how crazy it is that she is beating the odds.

Pancreatic Cancer Facts
• In 2017 an estimated 53,670 Americans will be diagnosed with pancreatic cancer in the U.S., and over 43,090 will die from pancreatic cancer.
• Pancreatic cancer is the 3rd leading cause of cancer-related death in the United States surpassing breast cancer. It is expected to become the 2nd leading cause of cancer-related death in the US by the year 2020, surpassing colorectal cancer.
• Pancreatic cancer is one of the few cancers for which survival has not improved substantially over nearly 40 years.
• Pancreatic cancer has the highest mortality rate of all major cancers. 91% of pancreatic cancer patients will die within five years of diagnosis – only 9% will survive more than five years. 74% of patients die within the first year of diagnosis.
• Few risk factors for developing pancreatic cancer are defined. The risk for cigarette smokers is nearly twice that for those who have never smoked. Family history of pancreatic cancer, chronic pancreatitis, alcohol use, obesity and diabetes are risk factors. Individuals with Lynch syndrome and certain other genetic syndromes, as well as BRCA1 and BRCA2 mutation carriers, are also at increased risk.
• Pancreatic cancer may cause only vague symptoms that could indicate many different conditions within the abdomen or gastrointestinal tract. Symptoms include pain (usually abdominal or back pain), weight loss, jaundice (yellowing of the skin and eyes), loss of appetite, nausea, changes in stool, and diabetes.
• Treatment options for pancreatic cancer: Surgery, radiation therapy and chemotherapy are treatment options that extend survival or relieve symptoms, but seldom produce a cure. Surgical removal of the tumor is possible in less than 20% of patients diagnosed with pancreatic cancer because detection is often in late stages and has spread beyond the pancreas. Adjuvant treatment with chemotherapy (and sometimes radiation) may lower the risk of recurrence. For advanced disease, chemotherapy (sometimes along with a targeted therapy drug) may lengthen survival. Clinical trials are testing several new agents for their ability to improve survival.
• Pancreatic cancer is a leading cause of cancer death largely because there are no detection tools to diagnose the disease in its early stages when surgical removal of the tumor is still possible.
*Source for statistics: American Cancer Society: Cancer Facts & Figures 2017

Looking for some prayers and positive thoughts…

Written on Tuesday, June 6th @ 11:30am

The weather is absolutely beautiful here in Iowa. As I sip my coffee and have Calvin laying on my lap, I prepare mentally for the next two days.

Crystal and Gage are off to Mayo. She begins her tests this late afternoon. We will know her results by late afternoon tomorrow, the 7th.

The biggest question I have had lately is, are you going this time? So funny, I have not asked and she knows I will go at the drop of a hat. Crystal had me over to her home for lunch last Friday. She asked if I would come to the doctor’s meeting when she gets the results. I think my eyes were huge, I smiled and said Yes. Yes. So, I will be driving to Rochester tomorrow for lunch and her appointment with the doctor’s, Crystal and Gage.

Crystal has had a busy May. She turned 25, she traveled to Vegas, she traveled to California. She looks beautiful, relaxed and of course smiling. Now does she worry about the cancer coming back? Yes. Is it in the back of her mind? Yes, at all times. I believe it is in the back of everyone’s minds, we just don’t say it.

At lunch we talked about many things. We talked about all of her blessings. We talked about her vacations. How lucky to be surrounded by a confident team of women in Vegas and then turn around and see God’s creations in Yosemite. I was telling Crystal that I needed to write an update and if there was anything she would like to say or write. She thought for a second and said, “Well, everyone is saying I look good. Lot’s of people are asking me how I am feeling. And as I tell them, Thank You and I am really feeling great. I think to myself. I always feel great. Except for the first time. And of course when I am on chemo or have had a surgery. But every time it has come back, I have always felt great. I believe that is why it is called the Silent Killer.”

It made me sad to hear her say that. I guess the truth sometimes hurts.

As for me, I have prayed, I have been thankful, I have asked for guidance. And I have begged to let us have a summer with our kids grown, no schooling, no activities, no wedding planning, just us living life. No cancer, no chemo, no procedures just us living life. But when I say, I realize that is what we are doing, living life. And living life is not always blissful and worry free, it is how we personally look at our own life stories.

As for Crystal’s sisters. Courtney is loving where she works. She is a darling dental assistant. She has moved into a townhouse with her boyfriend and his brother. Three’s Company. When we were in Vegas with the dance team and ready to come home, Courtney said, “I am ready to come home because I love my life in Iowa”. I can’t tell you how happy it was to hear that, it made me smile and think about myself. So, the sad thing is when I am on vacation… I never want to come home so what the heck does that mean? Oh wait, yea I have bills, three children, one fighting cancer, and marriage… yea that is work. So reality sometimes doesn’t look so much fun to come back to. lol

As for her little sister Cassidy, she has bought her 1st home on her own. It is amazing. That was something she really wanted to do, so she did it. She is very fortunate that she loves her job. Plus she has been working and saving since her senior year in high school. She never enjoyed school, she even tried Kirkwood but it was not for her. It is amazing how people can judge, even your own peers when you are not doing what society thinks you should be doing but like I tell her…just wait and see how their lives turn out when they are 50 years old.

National Cancer Survivor Day was Sunday, June 4th! We did celebrate, we will continue to fight and raise awareness. We will remember that life is a gift and we need to continue to live it.

Thank you for the love you give my family…

1 Year Ago…

Written on Wednesday, April 26th @ 11:00am

I could hear the rain this early morning, my bedroom window was slightly opened. I could feel the damp cold air. I got up, made some coffee and reflected what I was doing a year ago. I knew that today was going to be the day to do an update on Crystal.

1 year ago a miracle happened. The team of doctors at Mayo used their gifted hands and removed two tumors from her liver. Something that on May 11th, 2015 said would not happen. If you recall, that was Crystal’s Birthday when we learned that the tumors were back. They said that their was nothing they could do except to begin Chemo again.

And today, a year later, there has been no chemo, no major surgeries, no procedures…It is a miracle. For the first time since 2013, she has gotten to go a year with none of that. We are so blessed. We are so thankful. I don’t even know how to say it with words.

I have to admit, the worry is always there. Even Crystal said to me last week, “Mom when they felt they got those tumors, they did say it should give me a year with no detection. At least that was what they were hoping for. So now that it has been a year, do you think it is back? It is so hard to not think about it.” And of course as a mom, I feel bad that she has to think about it, she looks at life very different that many of us. It is a blessing and a curse.

We learned last week that Crystal’s next appointment is June 6th & 7th which means she gets to enjoy the month of May with no worries if it is back or not. That works perfect for the busy month of May that she has planned.

As a mom, I am very happy that there is no appointment in May. I didn’t want to worry about the news when she has so much happy stuff planned. So, thank you God for helping make that happen without us doing anything.

A lot of you have asked me, are you going with her to the next appointment at Mayo? Funny, I don’t know. That is her choice. All that matters is that she knows I am there when she is ready for me to go. Some of you have been very vocal that I should go anyway. I think that is great if it works like that in your family. But I personally would never invade her life. I learned that in marriage counseling years ago. Who ever dreamed I would use those tools with my daughter. She is a soon to be 25 year old beautiful woman. With her own family. I respect her. I trust her. We’ve raised her to know what we like and don’t. And I know that her husband loves her just as much as me. Plus, she is not alone…God is always with her. And all of you pray for her. She can feel those prayers. Her mom can feel it too.

This year was very difficult for me. Lots of tears from March 27th-till about last week. It was the first time that it really hit hard. I think it was because it was the first time, we weren’t doing something like surgery, chemo, doctor visits…So I would just relive that 2013 year. It was shocking, it was horrible, it was sad, it was hurtful. I did good writing to you all but there is so much I never wrote. Life can be so hard, emotionally, physically and financially. People can be so mean, so judge mental and when it comes from family it hurts. It takes all of the positive people in your life to rise above it. Sometimes you ask if there is a God? Why would he allow this? As my mom recently said to me, “Honey, that is not God, it is life. God is there to help you through it”.

Since my last update, I celebrated a birthday, there was the Spirit Show, St. Patrick’s Day, Crystal’s “new” birthday, her sister’s (Courtney’s birthday), Easter and learning the news of her next appointment. When you type it, wow…that is a lot.

At the Spirit Show we did a tribute to the ones fighting cancer. I must admit it was emotional but I felt it was important to take the platform that I have built for 24 years and use it for good. It’s funny that I say that. I have gotten grief from some people about that. I have heard friends/family make remarks that I use it to promote my business. When I first heard that, it stung. I would never do that. But Crystal brought it to my attention. Do what mom? Talk about your daughter? And you just happen to own your business which happens to be in the public a lot. Help others see how horrible cancer is? Show others the we can fight it together? Look who is saying it. And Crystal is right. She sure is my rock. Jon Read, with Read Photography said to me years ago at a photo shoot. You have no idea of all of the contacts you are making with the CR Spirits, they may not help you at the moment but they may help one of your children in their future. Remember that Tiffany, that is what I have learned at my age. Now keep in my mind, he was not referring to one of my children being sick, Jon was thinking more business and if my daughters were to ever take over. But those words he said, he is so right. A lot prayers and support came from those contacts business/performances/studio. It is kind of like the people that complain about Facebook. Why wouldn’t you want all of the prayers you can get? If you had a way to reach lots of people and ask for help, why wouldn’t you? I believe in raising awareness, I believe in sharing our journey, I believe in miracles. I am positive person. And if you can’t find the good in it, or a positive side in it then those are your problems, your character, not mine. I choose to rise above. To all of you fighting cancer, here is a video to show the support behind you. Never give up Hope. Hope is stronger than Fear.