Thursday, February 24, 2011

Loving Her...

My name is Katy and I am Kristi's baby sister. I have walked very closely in this cancer journey with her and that IS a true blessing. I very easily could have missed out on being here for her but GOD had other plans. He knew what my husband and I didn't while making a very hard and stressful decision to move. We recently moved here from Austin, TX and during the transition of the move she offered that me, my husband, and my son live with her and her family. We found out she had cancer shortly after we moved and I was so grateful that I could be with her. I have been mostly a care taker of the house and her kids while this is going on and not so much of the one that takes her to appointments. While this is a form of supporting her it definitely does not feel the same as supporting her at her appointments. I waited patiently for my turn and with my sister Amy's help babysitting my son I was able to go to what was going to be her last Chemo appointment. (Although we didn't know that at the time.)  I took Kristi's big camera and told her that we were going to document "chemo day"! I have a passion for pictures and all that they can share with people. Not only do they let you in to very intimate moments like this but they let you really feel what you see. When I look at the picture at the beginning of Chemo and the last one at the end of the day it breaks my heart. I watched her walk in sick and walk out even more sick. Sometimes pictures are hard to see but it's someones reality. Sadly, it's my big sister's reality. The sister that always has Joy in her heart and all the energy that I wished I had! I remember my mom saying she hated that "they are going to have to make her sick to make her better". When this all started Kristi was not sick, she didn't have symptoms, and sure enough they have made her very, very sick. I have seen it all happen right before me and as much as she wants to be herself she just simply can't. The Lord will renew her spirit and I am grateful that we know Him and that through Him all things are possible.

The start of our day in our matching purple shirts!!  
"When sisters stand shoulder to shoulder, who stands a chance against us?"  ~Pam Brown    


I brought some purple paper and told Kristi that we were going to have to come up with at least three words each through out the day to express how we were feeling!  As you will be able to see the words are much different from the patient to the supporter! My first word was "SUPPORTIVE". I was so happy to actually be able to go to an appointment with her. It made my heart very happy. I know that for her it's such a hard day but I was very grateful to be by her side. 
Kristi's first word was "EXHAUSTED"! Some way to start the day!
It was absolutely freezing in there! brrrrr.......
Well, the words say it all!! Kristi started having a hard time coming up with just one word for her signs!! You can't help what you feel!!! Haha!
So many feelings....not sure which one's to pick!?!?
Very sick and ......
Never been so Proud!!! All that Kristi has gone through and still is going through is such a testament to all of us. She has done it with such courage and strength, even in her weakest moments. She is my "Warrior Princess"!! :)
Kristi, I have never been more proud or grateful to be by your side than during this journey. God knew what this year held for you and our family. He knew that I would be sick with sadness if I still lived in Austin. To Him I am very grateful. We needed each other in this move/illness. I am forever grateful for what you have done for my family to move here. I wouldn't want to be anywhere else. I love you deeply. ~Katy 
 "A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life."  ~Isadora James

Chemotherapy here I come...for the last time!

Kristi before treatment begins! (2/18/2011) We found our perch in the corner where we took lots of pictures! Little did we know that this would be her last chemo treatment. We thought she would have another one on 2/25 but were relieved to find out she didn't have to.

Just waiting to be hooked up and to get started! 
This is her has to go everywhere with her and is rather annoying because if it's unplugged it beeps all the time.

One girl asked Kristi on her way back from the restroom if she feels like she should be dancing with her pole?!? Really! Kristi said that no it didn't!!!

Chemo makes Kristi sick and so she has her regular sandwich of peanut butter and honey on hand! Always made by me every Friday with love!! :)

I made sure that Kristi got exactly what she deserved...a massage!!! They have massage therapists in there for a few hours every day doing massages for training. Kristi did not sleep the night before due to severe leg pain and so I thought this would help her relax.
All cozy in a very cold room with her purple blanket!

Six bags of different fluids and medicine later and she's all set! This picture doesn't even do it justice! It's just crazy to think all of that had to go into my sister...weekly!
Kristi after chemo! She leaves very puffy and uncomfortable. A very big difference from the first picture I posted. Kristi has had to take steroids as well which also contributes to puffiness. 

Cancer will not beat this strong woman!!! :)

This is how she would like to feel...
BUT this is how she really feels about Radiation!!!!
I did drag Kristi around for a few pictures afterward and she obliged!! I told her that she would thank me later! She has very much wanted to document this journey and this was the only way I knew how to help. I love pictures and feel that they are a realistic way of showing the journey.

Loving my sister,

Wednesday, February 23, 2011

Feed your faith and your fears will starve to death.  ~Author Unknown

Hi, I am Kristi’s oldest sister, Danina. Today was a “marker” day.  Kristi completed her last day of external radiation.  She was given a certificate and met by my siblings with purple balloons!  While it was a day to celebrate, it was one of the hardest physical days she has experienced.   Kristi has an infection and was in tremendous physical pain in her back and abdomen, and in her hip and leg due to inflammation and nerve endings being affected by the radiation.  She also experiences other difficult side effects and stomach issues that require her taking extra trips for fluids and anti nausea meds.   She and Billy will travel to Oklahoma City next Wednesday  (March 2nd) to the OU Cancer Center for scans and Dr.’s appointments regarding the next step towards internal radiation.  She will find out tomorrow if she will have one more round of chemo on Friday.  (Ring that bell LOUD if you go back, Kristi!!)   As I sat in the large room full of  many cancer patients sitting side by side in recliners and all hooked up to their chemo, two people were able to go ring the large bell that hangs on the wall signifying it was their last treatment. 
 I have just returned from spending a week in Arkansas with the Wright family.  I was struck by several things.  I was so grateful for how Billy loves and cares for Kristi.  I was proud of my siblings for how hard they have worked to come alongside Kristi, Billy, Isaiah and Alyssa.  But,  the primary thought was that cancer, and the treatment of cancer,  steals from all your resources.  Time:  Most of the day is spent traveling to appointments, or sitting in waiting rooms, or getting your treatment, or recovering from your treatment, or seeing Dr.‘s, or being on the phone scheduling Dr.‘s appointments, or trying to communicate with friends and family about your response to the treatments.  Energy:  For Kristi, all of her energy is going to fighting this terrible disease. Feeling physically drained is her normal. The treatment schedule, the chemo and radiation, and the side effects of physical pain, stomach issues, and insomnia drain every physical resource.  For Billy and her other caregivers, there is the schedule of taking Kristi to treatment and then trying to fill in all the gaps for the children, meals and home, and some co-workers doing extra at work for Kristi.  For Billy there is the middle of the night rubbing Kristi’s back, or hip or leg that are causing intense pain.  This is not including the children’s anxiety causing them to start in their room every night, but at some point during the night moving to the floor in their parents room in order to “be close”. Relationship: While Kristi has worked very hard to try and communicate and maintain relationship with her husband, children, family, friends, and co-workers, it is so difficult because the resources of time and energy have already been taken, so there is not much left over.    Financial:  Cancer is expensive, even with insurance.  Praise the Lord for good insurance and praise the Lord for many of you who have helped with gas cards, food, housekeeping, grocery shopping, and paying for Kristi’s family members to fly to Arkansas. Praise the Lord for the way Leap Frog and it’s employees have supported Kristi in her career.   Emotional:  While Kristi keeps a smile on her face often, there is much beneath the surface for everyone. The Joy of the Lord is her strength.  However, everyone is drained emotionally in the fight against cancer!!   So many different emotions are felt by all involved and grieving the little losses along the way is crucial.  Spiritual:  There is nothing like facing cancer to cause one to dig deep spiritually and to experience God in new ways.  However,  because Kristi’s immune system is down, she can’t attend church or large groups of corporate worship with her family.  Every couple of weeks she attends her community group and finds encouragement in growing together with others, and especially that couple of hours of doing something “normal” (not about cancer). 
Yes, cancer steals one’s resources.  However, as believer’s in Jesus Christ, my family has experienced God’s promise to “supply all your needs according to His riches in glory in Christ Jesus”  Philippians 4:19  A sweet lady at my church always says, “No one wants to hear the “c word” .....cancer, but remember that Christ is also a “c word”!   

I hope in the Lord, love my sister dearly, and thank each of you for how you have been walking with the Wright family through cancer,   Danina Kennedy

Sunday, February 20, 2011

So Why the Color Purple????

When diagnosed with such a rare cancer as Primary Vaginal Adenocarcinoma there is no symbol, no color, no statistics or cure rates.  There are no facts or clear cut treatment plans.  So many unknowns and so many uncertainties.  However, there is one thing that I could hold fast too and that is my BELIEF in a Savior that has the full ability to heal me; HOPE that my Savior will indeed heal me; and SECURITY in the fact that I have an amazing family and friend network that will support me and walk this journey with me 100%. 

When someone said ( I think it was my sister, Katy) that I needed a color I started thinking about what it would be without any preconcieved notions.  One night we were reading on-line about a retired military man now making a huge difference with Project Christmas Shoe Box and there were pictures of his medals.  One such medal was The Purple Heart, which today means one thing....SACRIFICE.  It means that blood was shed (through combat death or wound) in the defense of liberty.  Most probably wouldn't know this, but in 1782 General Washington established our first military medal, the Badge of Military Merit.  It was made of cloth or silk, purple in color and bordered with a white lace.  It could be worn either suspended from a ribbon placed around around the neck or sewn to the left breast pocket of the uniform. I certainly do not want to take anything away from the meaning of either of these medals as the men and woman who have earned them for the freedoms of our country have earned these particular badges in a way more deserving than I.  However, it did get me thinking about a cancer medal and what that would look like and why.

Cancer patients are fighting a battle.  They are fighting a battle for their own personal life.  The opportunity to make new memories with their families and friends and to be the warrior with a victory at the end of their own personal war. 

I was still determining a color on the day of my first gynecology oncologist appointment and my sister, Katy, came into the room to check on me and what was she wearing?  Purple and so was I.  We laughed, hugged, cried and said...our color is purple! 

My sister, Amy, added so much depth to this color as well on her blog that I'm going to steal a few quotes to share with you. 

"Purple is the color of good judgment. It is the color of people seeking spiritual fulfillment. It is said if you surround yourself with purple you will have peace of mind. Purple is a good color to use in meditation"

Daniel 5:29

Belshazzar did what he had promised. He robed Daniel in purple, draped the great gold chain around his neck, and promoted him to third-in-charge in the kingdom

Purple combines the stability of blue and the energy of red. 
Purple in scripture signifies Honor and Royalty

Esther 8:15

The Triumph of the Jews ] When Mordecai left the king’s presence, he was wearing royal garments of blue and white, a large crown of gold and a purple robe of fine linen. And the city of Susa held a joyous celebration.
Jesus was dressed in Purple before his crucifixion

Mark 15:20
And when they had mocked him, they took off the purple robe and put his own clothes on him. Then they led him out to crucify him.

Acts 16:14
One of those listening was a woman from the city of Thyatira named Lydia, a dealer in purple cloth. She was a worshiper of God. The Lord opened her heart to respond to Paul’s message.

I have claimed this verse along with the color Purple to represent my own personal battle.
"In times of trouble, may the Lord answer your cry.
May the name of the God of Jacob keep you safe from all harm. 
May he send you help from his sanctuary
and strengthen you from Jerusalem. 
May he remember all your gifts
and look favorably on your burnt offerings. 
May he grant your heart's desires
and make all your plans succeed. 
May we shout for JOY when we hear of
your victory and raise a victory banner
in the name of our God. 
May the Lord answer all your prayers!"
Psalms 20:1-5
I am sincerely touched by the amount of people who have purchased jewelry, shirts, socks, robes, notebooks, pens, flowers, frames, cards, you name it in the color purple to show their support to me during this time. 
What an honor it is to call you family and friend!

Christmas in Purple!

Birthday Visitors in Purple!
Valentines in Purple!
Birthdays in Purple!

Friday, February 18, 2011

Refined by Fire

I began referring to this cancer as a journey and what a journey it has been thus far. I have moments where I have more to say than I have the time and energy to document and share; then other times when there are no words to describe the deep emotion that wells up.

I have been so blessed to have the support of friends, family and neighbors through it all. Not one person has made me feel as if there is an expectation from me. No one has thought I should be happier, weaker, more sad or less sick. All have come together to show my family and I the purest and compassion and patience! You know who you are are I thank you from the bottom of my heart. My family is made better by knowing you.

I am sitting in the chemo room right now. I've had two bags of anti-nausea meds and I am half way through my bag of IV fluids before I get my Cisplatin and then one more bag of IV fluids before I go home from chemo #5. I am honored to have my sister, Katy, here with me today. She's been waiting her turn to come with me and asked me to give her one word on how I felt this morning going into today. My word was "exhausted". Her word was "supportive". I know that meals and child-care, cleaning, errands, kind words, etc doesn't feel supportive to everyone, but it all feels SO supportive to me!

This week things got a little hectic around the house.  As soon as my sister, Danina, left to go back home my nephew got a stomach bug and was quarantined to his room. Alyssa got strep throat and was quarantined to her room. I had to push through and go into work for buyer meetings and work with my boss and team. My sister, Amy, drove all the way to my office to pick me up for treatment Thursday while Billy took care of sick Alyssa and she had to turn right around because her son's school called saying she had a sick kid too! With my blood cell counts a little out of whack causing a weakened immune system this all felt stressful. We had to remind ourselves that God is in control of all these details and is not surprised by anything that is happening.

I have been having real deep pain in my hips and in my left knee area, along with the full effects of radiation as it comes to the end. My sleep has been minimal and the discomfort is elevated in so many ways. I have been holding fluid in my abdomen and there can be a 3" difference in my belly measurements throughout the day. To say the least I do not feel like myself as a woman, mom, wife, employee, friend, anything. I wonder when I will feel like me? Some people have said 6 months, 1 year, 2 years.  It is so varied.  I read this quote, "You're the sum of all the things that came before this and all the things that will come after. You're more than what is happening to you right now. you always were and always will be". A good reminder for anyone going through life's hard moments. God designed us to be refined in this fire and come out better on the other side.

1 Peter 1:7  "These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor..."

Thursday, February 10, 2011


Starting out with a big Ugh is probably not the way I should go, but it is a more honest reflection of my mood today than not. 

I was so encouraged by this last week-end following chemo #3.  I could feel that it was easier to make it through the days and I'd found little tricks to help me drink more fluids and be more engaged, even alert.  Although tiring I made little rice crispy treat football jerseys and footballs with the kids for Superbowl and enjoyed it!  I wondered to myself why I was feeling so much better and really decided the extra IV fluids and medication schedule was working.  Maybe my body was getting used to this more!  As of Tuesday I was happy, thankful, blessed by so many.

In my last entry I admittedly said that I wasn't feeling many swaying emotions, I wasn't even certain of what to pray as my real "need" of the moment.  This emotional numbness feels difficult to me; as I've said before I feel deeply and I often send up even "two word" prayers all day long.   The verse in Romans 8:26 says "If we don't know how or what to pray, it doesn't matter.  He does our praying in and for us, making prayer out of our wordless sighs, our aching groans."  Although I wasn't at a stage of sighing and groaning He was praying; interceding on my behalf as many of you were and I could feel it working.  Now I feel Ugh and I might even be sighing and groaning.  The ups and downs of this disease is so real and I know it is a challenge for those who watch and support me.

I got a wonderful little book as a gift last week and the author Melvina Young writes this.

"When a beloved relative and a couple of dear friends of mine were diagnosed, I wanted desperately to offer words of encouragement and hope.  I wanted to express my love and support.  Instead, I found myself at a loss for what to say.  They were scared and I was scared for them.  Plus, as absurd as it seems given the circumstances, I was worried that I might say the wrong thing...and sometimes I did.  Still, the message I got back from my loved ones was, "I'd rather have you say something and risk saying it badly, than say nothing like this wasn't happening to me."

I started wondering what someone who's heard "It's cancer" needed family and friends to say.  I started listening more closely to those people.  They said things like " I don't know why this is happening.  I'm scared.  I'm angry.  I'm tired.  I'm sick, but I don't need pity.  I'm still the same person and I need the same love from the people around me." 

I tried to recognize many of the widely ranging feelings fighting cancer can bring up.  One moment a person might feel like a warrior, ready to face the battle head-on, but in the next wanting to retire to a private island on the outer banks of imagination.  Sometimes that same person might be overjoyed by all the love shown by supporters, but in the next unaccountably angry with everybody and everything."

What a perfect summary of my thoughts right now.  One day I'm up, the next I'm down and as so many people want to help and understand how I'm doing I find it hard to take you on my roller coaster ride just for the pure reason that I know it is hard to understand and to watch. 

Tuesday I pushed through work and personal stuff all day long and thought I'd done well.  Wednesday I was in my PJ's the entire day laying in my bed wishing I could just hit the reset switch and start over again.  Everything about me was tired and achy....weary.  Today I'm frustrated as my treatment was canceled yesterday and today due to snow and so now I'm pushed back another 2 days before this is over.  I'm not feeling well and I have to fit blood tests, radiation and chemo #4 all in tomorrow.

In the end though I know that, like the author, Young, says.....I would rather be doing this with all of your support than not so I'm here honestly laying down the sighs of my heart.  This verse comes to mind and I'm thankful for you.

Two are better than one, because they have a good return for their work:  If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Ecc 4:9-10

Thank you for being here when I need to laugh, to cry, or even to kick my feet. 

Friday, February 4, 2011

Sailing in the Storm

Earlier I mentioned a song by Andrew Peterson where the chorus says:

And we’re dancing in the minefields
We’re sailing in the storm
This is harder than we dreamed
But I believe that’s what the promise is for
That’s what the promise is for

In the last couple weeks as my mind has just not been clear enough to put my thoughts, my feelings, my next steps into words I've asked myself what promise it is I'm clinging to?  Aren't there so many promises and also so many needs?

One line in this song says; So when I lose my way, find me.  Isn't this what we all want, no matter what our situation?  Especially as a woman, I want to be sought out, looked for and really known.  Ps 139:23 says "Search me, God, and know my heart; test me and know my anxious thoughts."  As this process gets more mundane and repetitive I've struggled to feel any emotion.  The shock has worn off and the reality has now settled in, not only for me, but for family and friends.  Although I still have surprises sometimes, like today, which I'll talk about in a minute, the reality of a daily 90 minutes drive to radiation is there.  The reality that the chemo meds make me sleep too much, feel generally not well and have an unclear mind at times is ever present.  However, I cling to the belief that our God would take the time and put forth effort to search my heart, test me, and know my anxious thoughts through this entire process.  Ps 139:1 says "You have looked deep into my heart Lord, and You know all about me."  There is a promise.  When I lose my way, not even comprehending my own emotions, needs, fears or wants He has already found me and knows all of it.  Nothing is a surprise to Him!

I've had a horrible time getting my IV fluids, drawing blood and getting chemo treatments because my veins keep blowing out or collapsing.  I have never had this problem before, but yesterday I went in to have blood drawn and they had to try twice because I wouldn't bleed.  I don't even understand that.  I prick my finger and bleed enough for a band-aide, but when I need to there is not a drop to be had.  After this the doctor and I discussed something called a Picc line.  For those of you who know someone who's had cancer or another ongoing illness you may be familiar with this, if not here's a quick link. 

Although it was clearly the best decision I was extra nervous over this procedure, because I've gotten so many bad experiences lately. I got a call this morning at 8:30 to be to the hospital by 10:00 am to have this inserted.  I took a 1/2 ativan before I walked in just to help calm my nerves.  I have to say there was a cath tech named Clay that did the procedure and he was wonderful as was his assistant, Deb.  God knew I was anxious and although I found it hard to pray I had so many texts and e-mails that I was covered in prayer and they worked because it went off without a hitch and made my chemo SO much easier to get going this afternoon.  Thank you to my prayer warriors.

So, the next part of the song says,

So there’s nothing left to fear
So I’ll walk with you in the shadow lands
Till the shadows disappear
Cause he promised not to leave us
And his promises are true

Is 43:1b-3a is this promise. 

“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD your God"
He knows me...He searches me....He understands my needs and thoughts..... and he promises WHEN the trials come I will not overtaken!  When we had our house fire 4 years ago I saw this promise loud and true in our lives as we literally were not burned and were not set ablaze.  There is no doubt in my mind that this promise is just as true today as it was then.  This will not overcome me. I have no idea how to sail, let alone in a storm, but I'm planning a victory lap on a sunny day this Spring! 

Wednesday, February 2, 2011

Snow Days

As I look out my bedroom window and there are many inches of beautiful white snow on the ground I long for a couple hours of energy to bundle up with the kids and go make a giant snow fort; lay in the snow creating snow angel after snow angel.  Our fire is going and windows are all steamed up from the temperature difference and it feels so cozy and peaceful.  A tranquil world that God has created for us to enjoy just for a couple days.

My treatment facility is open today so the normally 45 minute each way drive will probably turn into double that time each way, but we will venture out to do what is necessary and I'll stick my snow boots in the snow and attempt a good smile about it.  I was happy to have a day off yesterday. The drive is getting so long and routine for me and I know it is for my drivers as well.  In the business of saving life we can't have too many relaxing snow days though so off I go to get ready and I will focus on the fact that there are other nurses and doctors that had to venture out to take care of me today when they want to be home as well.   So thank you God for  them and thank you for the beautiful change of scenery for today's drive south.