July

73% Die in the 1st Year they are told they have Pancreatic Cancer!

Written July 29th, 2013 4:45pm

What a beautiful weekend we had.  The weather was just perfect here in Iowa, unless you were going swimming or boating that would have been a little chilly.

Well, we have Crystal all moved back home.  Almost have everything put away.  That was exhausting for her and all of us.  Crystal was taking her chemo pills during this time.  For the last 5 days of her chemo schedule she has to take another kind of chemo pill along with the other ones.  That pill makes her sick.  So trying to pack and move can be difficult when you’re under the weather.

With the move, the chemo pills and all of the emotions you go through…I laid in bed on Sunday, July 21^st.  I was not feeling good at all.  I think I was just worrying about everything.  Everything that was out of my control.  I tried hard to pray and have God take over but I sure was struggling with it.  I couldn’t even focus to get the prayer out.

About 3:00am, Crystal’s light turned on in her room.  I laid there thinking, hmmmmm I wonder if she is okay.  I gave it 5 minutes.  Then I went and opened the door, I looked at Crystal.  She said, “Mom, I don’t feel good.  I need that other medicine to help with the nausea.”  I told her that this is what we except to happen with chemo.  So were good.  As I got her water and medicine, I thought to myself I am so happy she is home.  I don’t think she would of every called me at 3:00am to tell me she didn’t feel good.

As I sat by her bed I noticed she was sweating terribly.  I said, “Crystal do you think you have a fever?”  With all of the energy she could gather, she said, “I don’t know?”  I flew to the bathroom, grabbed a thermometer and immediately checked her.  Well, I must say my thermometers are when my girls were little, not sure on accuracy.  One thermometer stated 102.9 as the other one stated 100???  What to do?

We called the doctors.  We had to go in for blood work.

As a mother, it’s tiring and sad.  I want to be positive but realistic.  I want it to go away.

As we got to the doctors, Crystal did her blood work and we learned that her body was able to fight any infection that might have been trying to start.  YAY!  Crystal tries to act not sick.  Sometimes when her body wants rest, Crystal thinks let’s do something else to keep her mind off of it.  Needless to say Crystal slept for about 3 days straight.  I would say it was probably her weakest point with the chemo so far.  We both think it will get worse before it will get better each month.

I know she gets depressed with sleeping all the time but to get better she needs to rest.  She is also trying to decide about college.  She has ½ of a semester to finish before heading to Mt. Mercy.   I really feel during the fall and still doing chemo, she should consider one class or none.  I am afraid, if she is ill and can’t finish the semester she will go through all of the emotions she did back in February, when she first was becoming very ill.  I don’t want her to be hard on herself.  I think everyone has that problem sometime in their life.

You know I have asked Crystal recently, when I got my Shutterfly Book back from our Florida Family Vacation in March.  That was the week before we knew what Crystal’s diagnoses was.  By the way, she will not even look at that book, won’t even open the page.  So I asked her, what she was feeling on that trip.  I remember her lying around.  She was quiet and weak.  This is what she said, which killed me, “Mom, I felt like I was dying.  I knew something had to be terribly wrong.  I wasn’t tired, I was weak.  I had no energy and didn’t want to live like that for the rest of my life.  Mom, I would take this chemo any day over that feeling.”  You know hearing your daughter say that is painful.   Want to know something else that is hard to hear?

Listening to your daughter tell someone that she has pancreatic cancer.  That she has had a huge surgery and is going through chemo now.  Having her say out loud that when someone is told they have pancreatic cancer that 73% of them will die in the 1^st year.  That only 6% make it past 5 years.  That she knows they got the tumors and that she had a lot but she also knows it was in her lymph nodes so it’s in her blood stream so she is sure it will be back.  YEP!  I listened to her say that to a gentlemen, who was in shock watching this beautiful young women talk about her future with a smile.  I was crying my eyes out.  I think we were all choked up.  What a life, what a journey…

Crystal was feeling pretty good this last weekend.  She got to do what she loved.  She performed at Uptown Friday night in Cedar Rapids.  It has been wonderful hearing from all of you from that night.  We have new Spirit Fans.  Thank you.  Crystal has enjoyed reading some of the beautiful remarks at that performance and she hopes you can be at the next event.  I think when people watch the team perform.  And spot Crystal dancing it puts a whole new light on everything.

Some of you have asked why I was not there.  I would of have been but it was my Class Reunion and you can’t miss that.  All the people you share memories with before you realize what life is about.  It can be wonderful to see those beautiful smiles that you remember in High School, such innocents.

Also this crazy weekend Rod and I celebrated 23 years of marriage.  What a journey…

 

 

 

 

Live Life & Smile…it’s a Gift!

Written July 17, 2013 3:45pm

As I sit here at Mercy, it is beautiful and quite.  Crystal is playing with her phone and as I look out the big window, the sun is shining and I can only imagine how hot it is outside, thank goodness we are sitting in the air conditioning.

Well, it’s been awhile since we last posted, we have been pretty busy.  Crystal had a wonderful time in Michigan.  She loved the atmosphere, the experience and enjoyed the company.

Monday of last week, when Crystal returned home from her trip she did get her blood work rechecked and her levels were good.   After her appointment we were told to start her chemo immediately.  But, I must say it was very stressful after that visit.

We were very happy with the results, such a wonderful feeling being in control, getting back on track.  What we learned as we were trying to fill her pharmacy order, was that our insurance is now going to have us do mail orders of her chemo pills.  The panic was that it could take 24 to 48 hours to get her medication and our doctors wanted her to start immediately.

I handled it good until I could see that Crystal was beginning to tear up, the fact that she couldn’t just begin her process with no worries, the fact that she was out of control with another thing in her life.  I think it killed her and in return it killed me.  I needed to make a call to the insurance company immediately but before I could do that I needed to look at Crystal and say “It’s just insurance, we can get this figured out”.  I got a half of a smile from that little face.

Sitting in my kitchen for over two hours on the phone, I got nowhere!   However, thank goodness that I have a job that I can do that.  I didn’t have to run back to work after the two hour doctor’s appointment with Crystal and squeeze in this phone call over lunch.  I found a positive.

Anyway, the pharmacy that my insurance company is using told me to call my doctor, and tell him or her that Crystal would not be starting her chemo pills for at least 24 hours.  They cannot guarantee when the pills would arrive the next day but hopefully by 12pm.  Remind you Crystal is suppose to take them with breakfast and we would already be a day behind possibly two days.  It was very frustrating.  I was logical but yet angry.  Honestly, I could see a little bit of what they were saying but a lot of it didn’t seem like common sense.

Example, we are not sure what chemo process Crystal will be using because they are still trying to figure out her dosage.  Which means her formula can change in a minute.  Her one pill for 14 days is over $3800 so if the formula were to change at a moment’s notice it would take at least 24 hours to get the new pills but that also determines on what it is and what time the order is called in.  And as for what we just spent, that would just be a waste.  Now, if we were to get it locally, like we have been, we fill her prescription right before she is to begin each treatment, it is in stock so switching is not an issue.

Needless to say, we got started on it and Crystal has been doing very well.  She does get tired and sometimes a little upset stomach but other than that, she is strong.  A few sores on her toes but maybe, just maybe, it’s the roller blades which she has learned she can only do that after her blood work for about 4 days, and only if her platelet level is good.  Not sure if she liked hearing that…

Crystal has decided to move back home.  It was a very hard choice for her to make.  Besides the roller coaster ride of emotions, we now have the attitude; I am moving back HOME! UGH!  Frankly, Crystal wants her peace and quiet.  Crystal likes to have control.  Her own home, own rules and her own bills, it’s a feeling of accomplishment and I am so happy she has that attitude.  I could not be more proud.

But, it is also hard on everyone with the move.  Her sisters are adjusting just as her dad and mom.  I am happy that Crystal is home; to know where she is, how she is feeling and the fact she can save money with no rent but it is adjustment for all.  It’s another person with their own life, their own ideas, their own personality, and it goes much smoother when everyone can respect that.

I have been busy, with that being said getting Crystal motivated to pack and move her things was always in the back of my mind.  As a parent you just want to do everything for your child, especially if she is sick.  But I kept thinking, “No- if she can go to Chicago, then another trip to Michigan, run and roller blade…She can pack.” And that she has been doing with a little help from her sisters, actually Cassidy is a pretty good packer.  She is almost completely out of her apartment.

Crystal also took her sister, Courtney to her orientation at Kirkwood Community College.  It was very helpful, I felt a little left out but that day was also my doctor’s appointment, my cancer checkup.  I wanted Crystal so bad to go with me this time.  I knew the doctor was going to ask if there has been any health change with me.  And any health changes in the family?  It was an emotional day but my tests were good.   I am 6 years cancer free.

On a fun note, this last Saturday we presented our Spirit Posters.  I really felt that this year we needed to do a poster on cancer.  I knew what I wanted it to say but wanted to make sure Crystal was on board.  We took our photos and we took one of her showing her scar.  It was her choice to use that photo on the poster.  I explained to Crystal that we would be showing the world that cancer doesn’t discriminate.  That cancer doesn’t have to be ugly.  That it can’t take our Spirit.  When I asked Crystal her views on doing the poster/photos she said, “Yes mom, it’s my life.  It’s what I am living.”

I can say our Tiny Spirits have really been moved by this experience.  They touch her scar on that poster and stare.  And they look back at Crystal and smile.  They will never forget what we are teaching, we are teaching confidence.  We are teaching to live life, to dance like nobody’s watching.  I am proud of that.

As I look at Crystal typing this, I think look how far we have come.  Look at how many emotions we have conquered.  How many hurdles we have jumped how many people we have touched?  This is her plan right, God?  For Crystal’s Story to open the hearts and minds of all of us?  I can’t help but think we are doing all we can to stay positive and focused.  Talking with God, talking to others and sharing her story, in the end you won’t take her from me, from us?  Right?

As you can see it’s an emotional roller coaster.  Some days you are strong and some days you want to cry.  It’s exhausting.  Plus reminding yourself to talk with God, to trust him and the path he has chosen for you.  Knowing that we all have an appointment with God, we just don’t know when it is.  But the biggest question is, are we ready?  I have heard that a lot lately.

On another note we have a website for Crystal.  It is www.crystalsstory.com everything I update on caringbridge I will also put on this site. However, on crystalsstory.com there will be more pictures and more things to follow.  Plus our posts are put up by months so it’s easy to go back.  You may really enjoy it….we worked all weekend on the site which made Crystal very happy.

Live Life & Smile…it’s a Gift!

Blood work not what we planned….

Written July 2, 2013 6:11pm

Yesterday I had my cancer visit at Mercy, I am on my second round of chemotherapy. At these appointments we have to do blood work and I have to answer a ton of questions. When my blood work came back we found out that my platelet count was not right. I had to stop my chemotherapy right away. I was so upset about this, because it puts me further behind on this whole process. It makes me mad when I can’t control the things that are happening to my body, but when your platelet count is off it can cause blood clots and internal bleeding…..and I don’t think I need anything else with this cancer…so I will listen to my doctors and get off the chemo. My next doctor’s appointment to check my blood work is Monday at 9am! Prayers are needed please…

When I left Mercy I tried looking for the positive and of course I found some. One good thing is I am going out of town for the
Fourth of July and since I am not on my chemo medicine now I know for sure I won’t get sick…..and since I am 21, I can have a beer or two on my vacation. For my Fourth of July I get to hang out with this guy I have been talking to before I found out I had cancer. And all I can say is I am so glad we met. People come into your life for a reason. He has been there with me through everything and I am so grateful to have him. It is safe to say I am the happiest girl ever right now.