January 2016

Now we know why my mother works where she does…

Written on Saturday, January 30th @ 11:45am

I am sitting at my kitchen table with my computer, my cup of coffee and Calvin right beside me. I’ve been staring out the sliding glass door for the last 30 minutes. The sun is so bright it hurts my eyes when it reflects off the snow on the deck. And I am sure it doesn’t help that I have been crying, my eyes are red, my head hurts and that my blood pressure is high.

It all began on Thursday evening approximately 6:30pm. Crystal was a work and had just had a former Spirit Family stop in with roses for her and I, such a beautiful surprise. It was a happy chat & then Crystal received a phone call from CVS Specialty Pharmacy.

See on Monday, Crystal realized that she had not heard from CVS Pharmacy and was suppose to. So at 9:00am, Crystal and I starting in with the phone calls. Everything seemed to be just fine and her Chemo would be delivered Friday morning.

Remember it’s the new year so new insurance numbers.

Then Thursday night…nothing like waiting to the last minute, she receives a phone call from CVS and their is a problem with her Blue Cross Blue Shield number. Her Chemo will not be delivered. Crystal was switched to a few different people from CVS trying to figure the problem out. It was extremely upsetting. And keep in mind she has to start her next round by Monday morning. Crystal was the one who took the initiative to make sure everything was in order early now we have one day to figure it out and have it delivered.

Reminder in October we had a very similar issue with CVS but had nothing to do with insurance.

After making a phone call to BCBS we have learned that Crystal does need to have her Medicare as primary and her BCBS as a secondary. This Medicare is new to us and seems to be more work and headache than we would every thought. The problem is this takes time to get this switched. There is a process but again we have one day to do it all because in my eyes CVS should of said something by Tuesday NOT Thursday!

AS for medicare…So far it is a joke to me. We are told that it is good for her to have it along with BCBS. And not to get rid of it…Okay, but so far it looks like it is going to be costing us more financially and it has given me three days of hell.

Crystal with tears and all says, “Mom, I am not calling my doctors. If I can’t get the medicine than they can tell my doctors why. I will not call them. Like I told CVS mom, I need this Chemo, it is keeping me alive.”

It’s been four phone call with BCBS. I know they close at 5pm. It is 4:50pm, I am sitting and my leg will not stop shaking. The phone is in my hand. Do I call BCBS? If I don’t, I won’t be able to talk to them until Monday morning after 8am. I really need to know what is going on. Rod is saying call them. My heart is racing and then it rings…its BCBS. They have it all figured out. CVS will be calling Crystal and the Chemo will be delivered Saturday by 12pm. I immediately call my daughter, we are relieved.

Oh but it’s not over…

Crystal does get that phone call from CVS and Crystal needs to pay $3000.00 to get that Chemo by Saturday at 12pm.

Crystal calls me, she is trying to have a night out with her girlfriends but spent another 45 minutes on the phone with CVS at the restaurant, sick to her stomach, trying to figure it out because she doesn’t have $3000.00.

So mom gets the call from CVS Pharmacy. What 23 year old has $3000.00 to give at the last minute?  And has 45 minutes to figure it out or she doesn’t get it? UNBELIEVABLE!!!

Now after that 30 minute phone call, charge card later, her pills will be delivered by 12pm. I call Crystal and told her to enjoy her night. She made it very clear…I love you mom.

Now it’s Saturday morning, I am going to make Courtney and I a cup of coffee. It’s 9am, I open the front door, just waiting for the meds, you know I don’t want to miss it because with Medicare…you have to sign for it. Thank God, I don’t work so I would be available to sign for it.

As I walk to the kitchen to start the coffee and then walk back through the living room again, I see a note on the door? No No, you’ve got to be kidding me, UPS has already been here! They will try again next week!!!!

The tears immediately began. I was in shock. All this work. I call the 1800 number, they tried to deliver it at 8:15am. I have a dog, I was up, Courtney was up, no doorbell, no knock? I get a hold of customer service…there is nothing they can do. So what do you do when you are crying your eyes out, loss for words, broke, in shock and don’t want to tell your daughter…I called my mom.

Mom, now we know why you work where you do. You have met some good people. Thank you mom. Moms are the best!

I just got her Chemo….Thank you God…

A little story…

Written on Thursday, January 21st @ 10:00pm

I am sure you thought, Wow an update already? But I thought it was important to share a quick story about what happened tonight.

Before work/dance I was running with my daughter Courtney to get her scrubs for her Dental Program. I found myself so happy for her. Proud that she has continued to find what she wants to do with her life. She has set her goals and seems to always stay on task.

However, yesterday was a different story, Courtney was stressed. Third day of her classes and she was worrying about school. Not just the financing but the professor had given the class a list of things that needed to be done by Spring Break and that put Courtney in a whirl spin. Courtney would never think to wait that long to get it done. She immediately started in on it. Worrying about things that hadn’t even begun, I listened & watched the stress take the joy out of the journey she was beginning.

As we worked through her dilemmas, I made sure to remind her not to worry about tomorrow focus on right now. With a little more chatting she figured out a plan and with a good nights sleep she felt much better today. I must admit I did think to myself, if Crystal never had Cancer could I have explained it or helped Courtney as good as I did?…I really don’t think so.

I made sure to snap a photo of Courtney trying on her scrubs which completely annoyed her and then I flew to work. Crystal and Cassidy were working away. We had so many new students that it put a smile on everyone’s face. But once dance classes were over, Cassidy began to clean as Crystal and I began inventory.

Crystal sat at the front desk, I in my office. I yelled the numbers, she typed them into the calculator. But what I found is that Crystal had to keep asking me to repeat the number. I thought to myself, goodness I am reading them so slow and loud? Can she not hear me? As I hear her say, “Mom, it’s hard.” I took a moment and I thought is she crying. My heart began to race just a little, I got right up went to my door and there is Crystal with tears running down her face. I ask her what is it? Can you not hear me? She said “No mom, I can’t remember the number the minute you say it. Mom, I am not like that, I always remember.” And she is right, this is not her. I could tell it scared her. Her sister Cassidy came over to us and I could tell by Cassidy’s eyes that she will be crying herself to sleep tonight.

I calmed Crystal down, gave her a big hug. Told her I could finish it or we could try to do it again. Of course she wanted to try…

We began the process again only I sat right next to her this time. That was the moment, I held back my tears. I watched her type in about 40 numbers like a child just learning. It was difficult for her, it was difficult for me to watch. I didn’t want her to see me cry, I watched her mind think, her hand would go back and fourth over the numbers each time thinking like she had never heard that number before.

I work with Crystal everyday. Even before she became ill with this horrible Cancer. I watch what this Chemo can do and I think to myself, how do others go to work that do Chemo? Because unless their boss has been touched with Cancer or their boss knows you personally, I don’t think really anybody knows what is happening expect the one going through it. It is crushing.

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

So today, I felt proud, happy, sad, concerned and I am exhausted. Just a little story to remind you of what someone doing Chemo goes through.

Bring on 2016!

Written on Wednesday, January 20th @ 2:45pm

Hopefully everyone enjoyed their holidays, brought in the New Year with a joyful heart and that you are keeping warm with this cold weather in Iowa.

Well a year ago today, Rod was having surgery on his ankle. What a long journey it was for him last year. And today Rod’s ankle is much better, Courtney is in the dental program at school, Cassidy is learning what makes her happy and Crystal has finished her first round of chemo this year.

I didn’t want to update Crystal’s Story until she finished her first round. There really is not much to say. Chemo is difficult. Chemo makes you sick. Chemo makes you tired. Chemo makes you depressed. Chemo can suck everything out of you but yet it helps you fight to stay alive. And yet you pray that Chemo does nothing else but kill the bad stuff.

I must admit a hard thing to hear from people this last time was…”How is Crystal?” As I respond with “She is in the process of Chemo but doing Great.” I then hear, “What, she is on Chemo? I thought everything was good at the last doctors appointment. I thought you got good news? Is it back? Why is she on Chemo?”

We did get good news. But the fact is she still has the Cancer. She will do Chemo for the rest of her life unless a miracle happens and those tumors go away. Or they can surgically remove them.

When I finish saying all of that in a round about way. I usually hear…How do you do it? How do you get up? How is Crystal?

How is Crystal? For a 23 year old, who has been fighting Stage 4 Pancreatic Cancer for 3 years…She is doing as good as she can be. She is a fighter, a hero, a kind soul and because of her, her journey she has blessed us with hearing from all of you.

How do we do it? I am not sure how her sisters do it? I don’t know how they feel. I am sure sometimes they feel sad for her, yet angry that everything seems to fall around Crystal’s journey and her cancer. I think deep down inside they know as a family we have done pretty good keeping it together and yet I am sure they have guilty feelings when they think how they truly feel at times. But I bet we all have that, we are human.

Rod, he works hard. Rod would do anything for his girls. Rod is quiet. I think we try to focus on normalcy, plan for the future and to speak for myself, I do everything in my power to not think about it. It makes me sad.

So how am I not thinking about it? Right now I am working on the wedding! The future Mr. & Mrs. Gage Barnett. As my dearest friend Kevin put it…The wedding of the Century. We have sent out almost all of the “Save the Dates” just working on a few more addresses. I hope people understand we can’t invite everyone. But I know I will keep all of you updated and with photos through Crystal’s journey.

Now honestly how does everyone do it? Everyone has a story whether it contains Cancer or not. Life is a journey. Your family, your friends, your relationships, work, bills, higher insurance premiums, birthdays, happy events, sad events, gaining weight, losing weight…It really boils down to how we handle it. You may have a great year and then a bad year. But what I do know is if you have a thankful heart and you look for the blessing in each day it does bring you peace. Oh and sleep…yes sleep helps with that thankful heart. Sleep helps you find the blessings in each day.