Still Climbing

My hopes for a steady recovery after finishing treatment in August were postponed for a while.  September started off great. Tabitha turned one.  We had a birthday party at the park.  Tabi was the entertainment as we watched her enjoy her very own birthday cake.

  My little grandaughter is now toddling(walking) around the house and keeping her teenage uncles busy keeping her out of trouble as she explores our home. 

What sunshine she brings to my life!

Mid September brought some challenges that had me sliding down this mountain I've been climbing.  I even had to put on my extra bracelet for the climb.

                I've explained about my "couragelet" before but can't find the post.
                                               ( ker-age-lets, yes I made up that word!)
  I was given my first "couragelet by a Peruvian woman in a village where I was staying with my daughter.  We spent two weeks in Peru with a humanitarian project.   I wore  the bracelet when I climbed Macchu Pichu and have worn others like them from Peru since I began my mm mountain climb.

After several regular visits to my oncologist, the P.A. (physicians assistant) noticed some increased numbers having to do with liver function.  She suggested that I have an ultrasound.  The results came back positive for .........."Non-alcoholic fatty liver disease."  Probably caused by steriods...  definitely not alcohol since I have never drank any. (somehow that seems funny to me.  There has got to be a joke in there somewhere!)   After the initial panic, my internet research suggests that this is pretty common, rarely shows any symptoms, and can sometimes be cured through diet and exercise.  I have an appointment with a GI specialist in November to figure it all out.  Until then I'm putting it on the back plate.


Well my friends those steriods haven't finished with me yet!  Around mid September, I started to notice my stomach aching after I ate and really hurt if I drank pop. It began to worsen until I was feeling nauseous all the time. I visited my oncologist several times.  I went to the hospital infusion room twice for IV fluids and zofran-an anti-nausea medicine.  It just did not seem to work!  I was having more nausea and vomiting more than when I was on chemo!  something was wrong and I was getting very discouraged! Finally the Dr. suggested I get a scope.


On Tuesday the 18th, I went in for an endoscopy procedure where they sedated me then put a scope down my esophagus and to the stomach looking for anything unusual.  Strangely I was worried if they found something and also worried if they didn't.  At that point after being sick and tired of being sick and tired, I just wanted to get some meds to knock me out and keep me under as long as possible. 


Well before I could count backwards from ten to seven, it was over.  The doctor -who was an hour late starting! and trying to catch up, came in when I woke up with the news that I now have an ulcer at the bottom of my esophagus  probably due to.....steriods!  ugh!!  He quickly wrote me out a presciption for omeprazole and he was out the door. I have been on this med. for three years but quit in early September after Dr. Tricot told me I didn't need it anymore.  Huh? What?!!.  Dexamethasone strikes again!


So now I had an answer but that still did not make me feel any better physically.  Luckily, on Friday I had an appointment with my own medical detective.  Dr. Jane is an oncologist who specializes in pain management and medication side effects.  She thoroughly went through all of my meds and symptoms.  Some I have and some I didn't know I have.  She worked her magic, changed some meds,  and said that she could help me feel better.  I wanted to run over and hug her!!  It will take about 6weeks to heal this ulcer.  I should start feeling better much sooner. I'm also hoping be able to get rid of some of the pain and neuropathy too.   


So thats where I've been the last couple months and here's what I've learned:
1. I need to go to a GI because I have NAFSand GERD from an ULCER which I got from DEX and RXs for treatment for MM.
2. Being sick without knowing why has been tough.  I'm trying to be tougher.
3. Being physically sick is hard on the soul.  I've been doing a lot of soul searching.
4. The most important things in life aren't things.  They are my faith and my family and a good husband who brings me yogurt smoothies, black licorice, and back rubs whenever I need them!   Thank-You!

Dex Reflections

DEX REFLECTIONS  

by Kris Kelly 8/25/10

I sit in the warm grainy sand.

Back and forth I massage my tingly toes and feet in the warmth of the grains.

Messaging my mind with myeloma thoughts.

Always there when my world is quiet.

The hot sun warms my cold bones,

my chemo curls.

The hot sun melts into my parched skin

dried from drugs, and side effects.

I don’t recognize parts of this body anymore.

Portraits from my past are just faint ripples

of my reflection in the water now.

My youthful appearance changes as the effects

of dex puff and fluff shaking my nerves, my hands, my patience.

The dex waves this week seem stronger.

The foaming swirls swoosh up to my ankles.

lapping at my soul.

threatening to overcome my positive thoughts

my marching-forward-attitude, my sunshine.

I breathe deep, sleep more, try to protect my children from my pain.

I’m hiding my slacking energy behind the strong shoulders of my beloved.

I breathe, I wait, I pray, and then...

The draining dex waves slink back into the sea

and once again I can see the hidden gifts left behind

in the wet, cool, sand.

The shiny twisted shells of miracles.

Each one a unique blessing.

The life I have been given, the smooth, peaceful thoughts of family, love, God.

The tender mercies of my Saviour glistening  among the grains. 

and I arise stiffly, slowly and walk back to my world preparing for another round.

I was diagnosed with Multiple Myeloma October 2008.  Dexamethasone was the first medication I was prescribed.  I have been on this steroid continuously since then.   Two weeks ago I finished up my last round of Dex.  I go in for blood tests, a PET scan and a biopsy next week and then meet with my Oncologist at Huntsman a few days later.   Assuming that my "numbers" are all good, I will be done with maintenance treatment!   

I was feeling pretty poetic and somewhat dramatic as I wrote this poem a year ago.  I just wanted to get down on paper what I felt on my "dex days."  

A BEaUtifUL MeSs

Family Easter Egg Hunt.
That cute little bunny is my grand daughter.

How can I explain all that has gone on in the past several months?  Life just seems to roll along and sometimes I can roll along with it and keep up with the daily normalcy of life.  Other times I have been the rock that silently lies still and immovable as life swirls too swiftly for me to catch up.

So How am I doing?

I am trying to make it through the last three months of maintenance therapy.  It seems to be getting harder.  I have been on 20 mg of Dexamethasone every three weeks.  I take it on days 1-4.  I used to get a little energy on those days but thats seems to be dwindling.  

From about day 5 to to 14 I get severe fatigue, achy muscles, and pain.  I slowly work my way back up and feel pretty good for a few days and then start all over again on day 21.  If all tests are good I should be off of any treatment by September.  If I can hold out that long.  It is SO tempting to just call it quits!  I have too many things to do, projects to accomplish, and people to do it with to spend half my life laying down!  

So that's the latest report on “How I’m doing.”  I’m just telling it like it is.  

As for the home front it has been filled with great things as well as crisis.  I am writing about these things not to brag but explain how great, as well as crazy my life has been lately.

Trevor and Mallory. UVU graduation April 2011

Mallory our only daughter graduated from Utah Valley University in April.  She received a Bachelors degree in Behavioral Science.  We are so proud of her!  She has worked so hard to get through school quickly and can hopefully Trevor can do the same.

 Our son Jace has been out in the mission field for about ten weeks.  He Loves Puerto Rico and the people there.  Every week we wait anxiously for his next email.  Right now he is in Ponce.  He rides a bike along with another missionary-called his companion.  The companion instructed Jace on the fine art of catching lizards.  So as they are traveling along on their bikes they will catch a few and put them on their backpacks where they stay until taken off.  He has met many nice people and certainly stands out in a crowd.  He said several grandmothers tell him he has beautiful blues eyes.  

    It is so fun to share in his adventure.  If you would like to read parts of the letters he sends home you can go here.

Our two sons at home are keeping life rolling along, as I said before sometimes I can keep up and sometimes life just swirls around me.  Thankfully my husband pulls up the slack and spends a lot of needed time with them.

Last month, my son Trent completed his eagle project,  which took much planning and preparation.  He and several friends painted several buildings at a campground.  The total project took over 100 service hours to complete.  Trent demonstrated leadership and organizational skills to complete it.

   Our church has a very strong scouting program for boys and we really feel like it helps build Young men.  In a couple weeks their troop will go camping and river rafting. 

  Oh also this past month Spencer tested for his black belt.  He has worked really hard and for years to accomplish this goal.  It was more challenging to him then his older brothers,  We are so proud of him for sticking with it.  Now all my family have earned their black belts.  

Joe, Tyler, and Spencer after getting his blackbelt.

(whew stay with me here I’m not done yet.)  

So life has been just rolling along until Thursday May 26.  That evening I really  understood what it felt like to come so close to losing my husband.  As far as we can figure he choked on something and passed out.  When Trent and I found him he was turning blue with sporadic breathing.  I had Trent call an ambulance while I called my neighbor who is a Nurse Practitioner.  I was a basket case- (I guess becoming an EMT is out of the question for me.) Luckily his heart kept beating and he was getting some oxygen.  He was taken to the hospital and ended up spending three days there.  He had aspirated into his lungs so he was kept sedated and incubated for 24 hrs while they cleaned out his lungs and ran every imaginable test.  Nothing was conclusive.  The best possible medical reason this happened was that he just choked on something.  Thank goodness the other possibilities  were extremely serious.  Non-the-less this incident completely humbled us.  

    My body was already worn down from “dex week” and then with this added crisis, I ended up with an ugly case of pneumonia.  I’m sure you can imagine the chaos at our home this past week as he was recovering and I was getting sicker.  I am so eternally  grateful for strong family and neighbor support. 

Me at Huntsman Cancer Institute where I was treated
 March 2011

I have basically written the facts or events of the last few months, however the feelings and emotions are somewhat overwhelming.  It has been hard! and brings plenty of fresh prospective on what really matters.  I thought I pretty well had that covered with getting cancer but apparently the Lord has much more for us to learn.   It is absolutely a “Beautiful Mess” right now but as the song says, “here we are.”  I am still here and my husband is still here and we and our family are in this for the long haul.  But I do thinks its time for a vacation!