December 31, 2008
I'm goin' Home!
I'm packing my bags and preparing to go home today! I am so excited! I will be able to be at home for about a week and a half. I won't be worth two cents, but just being home will be wonderful. I am still going to have to be very careful around people and germs.
I have sure appreciated the posts of encouragement I have received. They have helped so much. If you want to keep a post private please let me know and I will not publish it. Be sure to leave your email address so I can contact you. Thank you so much for all the outpouring of love and support. It's time to start gearing up for the next round. but I will be ready!
December 29, 2008
Collection Begins
Today was an extremely long day!! I went to the hospital at 7am and got home at 6pm. After having labs done we waited about 2 hours for the results. During this time we wandered around the hospital and paced the floors. My joints and hips ached from the medications. I decided this whole ordeal felt like going into labor. I had labor pains and was waiting to deliver my own baby stem cells!
The "magic numbers" came back and I was able to begin collection. They hooked me up to an apheresis machine with tubes going everywhere. The blood was taken out. The stem cells separated, then the blood put back in. Modern technology is amazing! It was not painful-just uncomfortable to have to sit there all day!! Hopefully this will only take a few days. I am waiting to hear back from the hospital with the actual count. I will keep you posted.
Yippee!!!
I am jumping for Joy right now! They were able to harvest 34.5 million stem cells. I needed 21 million. What I thought would take several days has only taken one!!! I will go back tomorrow for tests, and probably a transfusion but then I am off the hook-(or line) Yippee
December 28, 2008
Zero and Counting
It's Sunday evening. My family came up and spent the day with me. My parents have a big snow covered hill in their back yard. So I got to snuggle with Joe on the couch and watch the boys sled down the hill and try to outdo each other with their superior sledding, snowboarding, shovel, little red wagon, and snowball skills.
I am learning how important white blood cells are and the effects of not having enough. The goal right now is to get my white blood cell count down to almost zero than as it moves back up to a certain point we will begin to Harvest the stem cells. Those immunities are pretty important and it is a strange feeling to feel my body weaken. Sometimes to the point where I can barely hold up a book to read, but this is temporary and I am told I will start to feel better.
We are crossing our fingers that the stem cell collection can begin tomorrow. This will take several days so once again I am learning to be patient! I have a port or tubing in place ready for the process. It is a Pain in the neck! I feel like a science experiment. My kids could take me to school inject colored water into one of the tubes on my neck and see what color I turn just like the classic white carnation experiment! okay that's not really funny but It hurts to laugh!
December 26, 2008
December 24, 2008
Merry Christmas
Christmas Eve is finally here, and I hope you are all enjoying every minute of it. My family came up and spent the day with me at my parents. It was wonderful!!! I feel rejuvenated and got to hug the stuffin' out of all of them. We enjoyed good food, good conversation and a few moments to reflect on the circumstances of this special Christmas.
We are very humbled by the outpouring of love and service from so many kind and wonderful people in our lives. I would like to share a scripture from Alma 7:10-12 that has helped me more clearly understand this purpose for Christ' birth and life upon this earth.
"10 And behold, he shall be aborn of Mary, at bJerusalem which is the cland of our forefathers, she being a dvirgin, a precious and chosen vessel, who shall be overshadowed and econceive by the power of the Holy Ghost, and bring forth a son, yea, even the Son of God.
No matter what our circumstances or challenges maybe, The Lord understands them! He has taken upon him not only our sins, but our pains, our afflictions, our sicknesses, and our infirmities. Sometimes when we feel we are completely alone and no one can understand what we are going through, we need only to remember that the Lord is there and He is filled with mercy and knows and understands what we are going through.
My hope is that each of us will take this scripture literally. I have told this to my children and hope that they know when I can not be there right now to give them a hug, help them with homework or listen to their problems that the Lord will always be there. I think this is a hard process for parents to learn from the time we let them take their first steps alone to sending them off to the first day of school. Sometimes we have to just trust in the Lord and teach our children to do also.
Thank you for letting me share some of my personal thoughts on this very Personal Christmas Eve. I love and pray for the Lords choicest blessing to be poured out on you and your families.
May we all continue to strive to follow His way and grow from the challenges we face.
Love, Kris
11 And he shall go forth, suffering pains and aafflictions and btemptations of every kind; and this that the word might be fulfilled which saith he will ctake upon him the pains and the sicknesses of his people.
12 And he will take upon him adeath, that he may bloose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to csuccor his people according to their infirmities.
December 23, 2008
Frozen Corn and Modern Miracles
So here's the scoop. Yesterday-Monday was a good day. After getting the chemo out of my system for a couple days, I felt pretty good. Had some momentum and was able to even work on a project for Christmas. You could say I was able to put a" little hustle and bustle" into the holiday.
Today was a different story. I went in to Hunstman at 8am to have a port placed on the side of my neck for stem cell harvest. Now Modern medicine is amazing and happy sedation drugs are definitely a miracle but after being at the hospital for seven hours I was done. I have found the greatest relief holding a bag of frozen corn on my neck for the past hour. Aw the simple pleasures of life! So my thoughts for the day are; bigger is not always better, drugs are not always the answer and sometimes frozen corn is more than a healthy vegetable!
P.S. about 15 more hours til I get to see my family. They are coming up to my parents to spend Christmas Eve day. Beacause of the storm coming on Christmas we thought we would move things up a day just in case the roads are too bad. My amazing husband is bringing up dinner. He loves to cook, and I am spoiled! This will definitely be a unique Christmas, but I know it will be one of great thanksgiving, love, and joy.
December 20, 2008
Top of the Hill
I made it over the first hurdle. I finished D-Pace today. No more backpack attached to me! I completed the first round of four days of 24 hr. chemo. I seemed to do pretty good. I am now preparing for the stem cell harvest. Tomorrow I will go in for a shot to entice the stem cells to "come out and play" in the blood stream and then over the next week my blood counts will be checked often to find when it is time to begin harvesting.
Modern Medicine is such a miracle. I am so blessed to have access to all of this medical information. I have my own team of doctors, amazing nurses, pharmacists, physicians assistants, and my angel parents who are caring for me.
This first phase is really just more of a "hill" then a mountain. As the days go by my immunities will continue to decrease, but I have to stay focused on just taking it one day at time.
The biggest challenge right now is much more emotional. I was able to see some of my family today, but I won't get to see all of them til they come up to my parents on Christmas day. My heart definitely hurts far worse than my body.
I have a great family and they are strong. We can do this with the help of wonderful friends, family and the Lord who is always there!
Prince, Jolin, and Celeste are the friendly experts at taking blood for labs. I see them several times a week right not. Thanks my Vampire Friends
December 19, 2008
Onward and Upward
Here is my new favorite scripture for the day. I thought I would share with you.
Proverbs 3:5-8
"Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all ways acknowledge him, and he shall direct they paths. Be not wise in thine own eyes: fear (reverence) the Lord, and depart from evil. It shall be health to thy navel, and marrow to thy bones.
I am counting on this! Hug your loved ones and have a good day. Love Kris
December 16, 2008
The first day of school
I feel like I am starting medical school 101. Learning about all the procedures, medications, etc. Today was my first day of school. I have a new haircut (very short-we'll see how long it lasts) New clothes (comfortable sweats.) A new notebook (to keep track of all the paperwork.) A new water bottle (gotta keep drinking lots of water) Lots of new books (I love to read!) and a new backpack (filled with chemo and two pumps) and also the love of so many people helping me begin this journey especially my family and parents. Thank you so much, I truly feel your support! And most importantly the spirit of my Heavenly Father. I feel his love and presence many times throughout the day. Lets just say we keep the lines open. Now where are my hiking boots?
Getting something out of my chest
WARNING do not read this if you are squeamish or small literate children are present.
I went in for another biopsy on Monday morning. The head doctor came in to do the procedure. I was all prepped with morphine and rolled over on the bed to begin when he said "no lie flat we are going to do it on your sternum." Yikes! needless to say I kept my eyes shut tight and did a lot of heavy breathing. He took two large vials full of bone marrow out- I peeked after it was done. Now I know what it means and feels like when someone says, "that sucked the life right out of me"
It felt like an elephant sat on my chest the rest of the evening. The results of the test are being used for a clinical study-my donation to science since I don't plan on having my body plastisized and displayed for Body World!
December 12, 2008
I am thankful!
I haven't mentioned my family yet-It is still really emotional, however I just wanted to say that I am thankful for:
Tyler, 22, my oldest son-for his strength and positive attitude
His wife Dani, 21(almost) for her willingness to step up to the plate with preschool and just becoming part of this crazy family.
Mallory, 19,-for taking care of so many of the things I can't. Santa couldn't do it without her this year!
Jace, 17 (almost)-for being such a great teenager who is always keeping me entertained with his enthusiasm for life.
Trent, 13-for making me happy with his quick wit and his talent for whistling around the house.
Spencer 10-for his easygoing personality and his hundred hugs a day.
and most importantly my husband Joe for his compassion and his unconditional love.
Someday I will be able to write more about my family, but for now they are what keeps me going and helps me to realize what is really important can last forever.
That is a fact!
Did you know that Multiple Myeloma is most prevalent in older black men. Somewhere in here I've got soul and I didn't even know it!
Getting Something off my Chest
Okay well it's the middle of the night and I am wide awake. That is when I do my best and also my worst thinking. So until my wonder drugs kick in, I will get caught up on this blog.
Monday I had the central line put in my chest. It was very strange. They only sedate you half way. So I couldn't feel anything put could hear the doctor and nurses talking. I was in the twilight zone! I have a big bandage covering half my chest that I have to keep on for a week. It is not supposed to get wet.
Tuesday I had to figure out how to have a shower. I put a big patch of saran wrap over it and then had to figure out how to keep it on. Well the Kellys are known for their expertise with duct tape, so I grabbed the roll and taped myself up. Definitely a fashion statement! I now know I have missed my true calling in life as a fashion designer.
December 06, 2008
Let the Games Begin!
Monday December 8th I begin preparations for chemo. I will be geting the central port put in my chest. This week I will be meeting with Doctors, taking an education class with Joe and my parents to know what to expect of all this, and having another biopsy-Yeah!
I guess this means no more denial. I can't pretend this will all just go away. It is such a rollercoaster right now.
I and my family are overwhelmed with the support and kindness, and concern others have shown us. We have seen the Lord's hand in our lives through the acts and prayers of many people in our lives. Thank you!
One of the reason I like going to Hunstman is that they actually have a big sign above the clinic door that says Multiple Myeloma. The Dr. and staff are experts in this rare cancer and they do an excellent job taking care of me.
December 03, 2008
Mountain Climbing
The Last mountain I climbed was in Aug 2007. My daughter Mallory and I had the opportunity to go on a two week humanitarian expedition to Peru. We worked in a mountain village, and also did some sightseeing. The picture at the top of my blog is me standing in front of Waynu Picchu and Macchu Picchu. There are ancient ruins we got to walk through. We climbed to the top of that mountain. The whole way up we walked on an ancient path made of stones. At the top is a a lookout tower where the people could watch for enemies. The whole trip was amazing! My daughter and I made some wonderful memories.
November 28, 2008
The Plan
This is Dr. Guido Tricot, The head Doctor and Research Director over the Multiple Myeloma Clinic. I put my Trust in him and my Faith in God.
We met with Dr. Tricot at Huntsman on Monday. We were very impressed with him. He said that he treats about 160 patients with multiple myeloma a year compared to most hospitals which treat 5 or 6. His treatment is more agressive, but he also offers hope for a longer remission.
So here is the plan. Before I can begin treatments with Huntsman we have to make sure all the insurance issues are covered and authorized. Then I will begin by having a central port put in my chest. which means less pokes in the future. After those two things are done, I will begin four days of chemo. Which will be administered through the port from a backpack. So I guess you could say the backpack I'm using to start climbing this mountain is filled with weapons to fight off the cancer. Not exactly what I had in mind when I spoke of packing a backpack in my previous post!
After the first round of chemo there will be about three weeks where my immunities will be very low. Hunstman requires that I stay within 20-30 minutes from the hospital, so I will be staying with my Parents in Centerville. When my blood levels get to a certain point they will begin to harvest my stem cells. These cells are usually located within the bone marrow but the chemo makes them come out into the bloodstream.
This first phase of treatment is called D-PACE which is an acronym for the different types of chemo I will be taking.
So here are the good things
1. The type of myeloma I have is slow growing.
2. One of the tests they did on the biopsy-from bone and marrow samples shows that there is no genetic damage-which means better chances of a positive outcome with the bone marrow transplant.
Here are the not so good things
1. I will most likely not be home for Christmas.
2. a million different fears that constantly run through my mind.
November 25, 2008
Multiple Myeloma
A month ago I had never heard of this cancer. Now I am becoming an expert. Here is a good website that explains it all.
http://www.multiplemyeloma.org/about_myeloma/index.php
November 20, 2008
decisions
Before we can move forward, we are looking at our options. Treatment for myeloma includes a stem cell transplant. Only two hospitals in Utah perform this. LDS Hospital and the Huntsman Cancer Institute. Each Hospital or group of doctors has different theories or approaches to treatment.
Right now I am in the testing phase. Over the last three weeks I have had an MRI, PET scan, numerous blood tests, a blood infusion, a bone hardening infusion, Pulmonary function tests, EKG, echocardiogram, and 32 vials of blood taken at one time! I have been poked, prodded, and thoroughly examined. One of the Doctors said it's like fighting a war-the more you know about the enemy the better.
On Monday we meet with Dr. Guido Tricot one of the nations top specialist in the treatment of multiple myeloma. He transferred from Arkansas to Huntsman a year and a half ago.
We are packing our backpacks and getting ready to climb this mountain!
How to Move A Mountain
By Cheri Call
When I was young I heard the stories
About the people who could make the
mountains flee
And every now and then, someone would tell me
I could do the same if I believed
So one summer night. I looked out my window
And I closed my eyes and listened to the wind blow.
And I tried to move a mountain
I wished for it to crumble at my feet I tried one thing after another
but I couldn't shake a leaf
I never knew that the mountain
Had a lesson it would teach
Cause as tall as I got, I still lived in it's shadow
I watched it tower over me
Til one summer day, I thought I heard it call me
so I closed my eyes and then changed into my blue jeans
And I learned how to move a mountain
It was harder than I dreamed it would be
But I set one foot down past the other
Til the mountain was under me
and I felt like I could see forever
When the truth hit my senses suddenly
This mountain wasn't really the first one that I'd moved
God had seen my victory
Every time I put my weakness behind me
And I close my eyes and let His mercy find me
I know how to move a mountain
I have to fall down on my knees
Then I get back on my feet and head on upward
Til I make it to the peak
And the montains under me.
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