Merry Christmas!

   As Christmas approaches, I want to take this opportunity to give an update on how I am doing and reflect on my life over the past several years.  I wish I could take a magic wand and wave it over me six years ago filling me with the knowledge of the future I am living today.

    My future was looking pretty grim as I received the diagnosis of Multiple Myeloma filling 80-90% of my bone marrow.  The prognosis did not look  promising.  

    I began treatment by preparing for a stem cell transplant just a few weeks before Christmas.   Then spent a year undergoing chemo, tandem transplants, and powerful steroids that all completely wiped me out.  The fun continued over the next two years with more medications and a weak immune system.

    Everyday was a challenge to stay positive,  live in the present, and learn to rely on the countless kind and generous acts of my family, friends, and my faith.  When you are in the middle of the dark tunnel  it is hard to stayed focused on the light at the end. There were many days I honestly never thought it would get better.  Then gradually, with out me hardly noticing, my health has slowly improved!  I actually can go several days without even thinking about cancer!!  I never imagined that was possible six years ago.

    Has my health returned to normal? No. Although my labs continue to improve, I still have some lowered kidney function,  a lower than normal immune system, and some lingering nerve pain.  

    I used to be in constant pain and on lots of medications.  I have managed to decrease my pain meds to the lowest possible dose, and my daily medications are almost down to normal.  

    I try to live everyday with gratitude in my heart.  I have been so blessed!  I know far too many who began on this mm path about the same time as I who are no longer alive, in remission, or are struggling to gain their health back.

   I will never know why I got cancer, or why it is now in remission and my health is returning.  I also don’t know how long, or if this remission will last.  But I do know I don’t want to waste this experience.  I know that there are many things I have learned and will continue to learn and grow from, from having lived through this life and death journey.

    I am a stronger person.  I am learning that I have the ability to decide how I choose to live my life.  I am learning to get rid of the, “I should's and I have to's,” and instead dwell on the, “I choose to's.”   Much of the busyness of the past have slid off my plate.  I am learning to replace them with things of more lasting value.  I am by no means perfect at this, but I know that cancer was a catalyst in examining and changing my life for the better.

    One of the new blessings in my life, has been  the opportunity to be involved in my church.  I am helping  in the Relief Society of my LDS (Church of Jesus Christ of Latter Day Saints) ward.  This is a voluntary women’s organization in my local area.  It is amazing how good I feel when I am serving others and have a purpose which reaches beyond myself.

     My husband continues to be my rock.  He has a tough job with lots of responsibilities and has had some of his own challenges over the past few years.  He still manages to keep this ship afloat!

     My family is growing.  Our oldest son and his wife just welcomed their third child into the family.  Beautiful little Violet joined her 4yr old sister and 2 yr old busy brother on December third.   

     Our daughter and her husband built a home about five miles away.  Their jobs,  school, and a busy two year old daughter keeps them on their toes.

     Our next son was married last January and I gained another daughter! They are both juggling work and school.

   I am so lucky to have all my married kids live close by.  The best part is getting to see and tend my grandkids regularly.  Being a grandmother is one of the greatest blessings in my life!

  Our third son is serving an LDS mission in West Virginia.  He left last July and will return home July of 2016.  Two years is along time for this mom, but I do this with faith in God that he will be able to serve, teach, and turn the hearts of the people to Christ.

I cherish his emails each week.  It is amazing to watch the growth that is taking place in his life as well as those he teaches.  I get to talk to him on Christmas.  Can’t wait.

    Our youngest son is still at home.  He is a sophomore in high school.  I am so glad I get to be involved in his life.  He is such a good kid.  

    With the exception of our missionary, our whole family will be getting together for Christmas eve.  Music, games, dinner, and our own nativity.  I better get off the computer and start checking off my list!

   I am so THANKFUL to be here! To feel well enough to enjoy my family, and to celebrate Christmas together.   I love Christmas and the opportunity to reflect on the birth of my Savior, Jesus Christ.  I know that His life neither began in Bethlehem nor concluded on the cross.  That He lives today!  That because of His life and atonement I can have peace in my life and hope for the future no matter what may come.  Because of Him I know that their is a purpose and a plan in all of our lives, and we all have the opportunity to live with Him again.

     Merry Christmas and may the New Year bring you love and peace!

Great Views

               The sun has been shining over the past several weeks and

I just wanted to post something a little brighter

than my previous post.

The weather is beautiful and the last few weekends

 have brought our family a chance to work in

our yard and garden.



Even Tabitha helped water the tomatoes.

We planted 300  tomato plants as well as onions, peppers, watermelons,
catalops, beets, peas, radishes,
 beans,raspberries and I'm sure there are more I have forgotten. 
My son-in-law and two sons plan on selling most of the
 produce at the local Farmer's Market.

Kirby and Zoey enjoyed the outdoors too,

Here are a "few good men outstanding in their field."

Trent always works better while listening to a few good tunes
 on his headphones.
See the blue beehive in the background? 
That's the new home of 30,000 bees
 thanks to my son-in-law and
another one of his new hobbies.

Eggs anyone?

What a great life I have!
The views from
 the top
 of my mountain
 are amazing!

I am learning to live joyfully in the moment!

Giving In and Giving Up

Every few months or so I make the same stupid mistake. 
Sometimes I just get so frustrated with my poor health,
never ending infections and  PAIN,  that
I just decide to throw it all up.
I mean literally and figuratively!   

Lately I have been dealing with nausea from too many antibiotics
resulting in stomach aches and another ulcer. 
Also... My liver decided to quit functioning properly.

So a few weeks ago I had a liver biopsy. 
The Liver doctor inserted a long needle between the ribs
on my right side and pulled out a sample of tissue to be examined.
(it was not nearly as painful as I had imagined-thank goodness)

It's been over three long anxious weeks and
I still have not received any results. 
The nurse did tell me over the phone that it's not likely cancer
from the lab report she read (whew).
But still I must continue to wait! Very frustrating!!   

So to sum it all up.
I am sick of being sick! 
Yesterday I decided to quit. 
Instead of getting out my 2/day pill box filled with antibiotics,
pills for this side effect and another for
the side effect of that side effect,
as well as a host of vitamins and minerals,
I just gave up and threw the box up onto the shelf.
I tore off my pain patch and decided it was all in my head. 
Maybe the reason I am always tired, have no appetite and can't sleep
or can't sleep enough is just because of all these stupid drugs!
     
At 2am I woke up in PAIN.
It hurt from my toes up to my nose. My body was stiff and grating.
I managed to hobble to the bathroom to get a drink. "I can do this,"
I said giving myself a pep talk, I turned my iPod on,
plugged in my ear phones and forced myself to go back to sleep
 while listening to my " middle of the night, lull me to sleep music".

It finally worked for a couple hours
until the pain grew and gnawed me awake. 
I lay there gathering my thoughts and then
finally my strength to do what I had to do.   
I hobbled back to the bathroom pulled down my pill box,
and took the few most important pills including a pain pill. 
I grabbed a new pain patch and slapped it on my back.

I gave up and gave in. 
I gave up the idea that my poor health is all in my head. 
That the pain is just imagined,
and that because I am in cancer remission
 the effects of fighting it have disappeared.
They haven't.  
And I gave in to the fact that I can not do this on my own. 
That (as my husband says) "It is what it is." 
My body has pain and my body is still trying to heal.
I can not run away from that fact. 

I gave my pain and my problems up in prayer.       
I pleaded for strength and courage to continue.
I need medication. I need faith.
I need strength from my Father in Heaven.

When I quit fighting against the pain, and
give in to what I must do.
When I give up my pride in trying to do it all my own,
and lean on the Lord for help,
I gather the strength to continue
climbing this multiple myeloma mountain. 

Here is one of my favorite hymns.
"How Firm a Foundation"
3. Fear not, I am with thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, upheld by my righteous,
Upheld by my righteous, omnipotent hand.

words and music here

  

JUST BREATHE



JUST BREATHE

 Last Monday was my six-month check-up at the Huntsman Cancer Institute.  I do a lot of breathing that day.    

I take my first breath as I step on the scales to be weighed and measured.  You’d think I would get used to this, but I’m still always hoping for a lower number.

I take a deep breath as the “double lumen” port in my chest is accessed and 12 vials of blood are drawn and then another breath when the nurse has to take two more vials from my arm.   It is a good thing I have never been upset by the sight of blood.  This trait has come in handy over the last three years.

After the bandage is applied, I am led down the hall to a small examining room.  I sit on the bed and answer the questions from the Physicians Assistant who will be performing a biopsy.  I know the procedure well.  I think this is my eleventh time.  I am usually not too anxious until the actual procedure begins.   An IV of a small amount of morphine is administered through my port and I lay down as it begins to take effect.  After the paperwork and the risks involved are explained, I turn on my stomach pulling the bottom of my shirt up three or four inches and the waistband of my pants down three or four inches.  I can only vaguely explain what happens next while lying on my stomach; which is probably a good thing.

The procedure begins with a shot of lidocaine and once again I breathe.  In and out, slow, deep breathes as the area of the skin and then the iliac crest quickly become numb.    The aspirate comes first.  A long needle is plunged through the bone and into the marrow where it is aspirated into the syringe.  I breathe through the aspiration. I feel strong pressure from my hip down my leg down to my toes. As if the sample is being sucked up from my toes into the syringe.  I focus on deep slow breathes until the pain subsides.  Out of the corner of my eye, I can see the P.A. hand the vial to the phlebotomist who prepares the samples for testing.   He banters back and forth with the smart, pretty, P.A. asking me questions now and then to keep my mind distracted.

 Far from over, the next part is the bone marrow biopsy.  It feels like a drill.  The instrument is pushed down through the flesh and into the bone to extract a sample.  I feel intense pressure as the tool goes round and round, drilling into the bone.  It seems to take forever.  And once again I must concentrate on my  breaths.  Finally a core sample of bone is extracted and dropped into another vial and handed off to the friendly phlebotomist. I open my eyes and ask for a quick peek.  I’m curious what this piece of my body looks like.  The white bone is about 1 ½” long and the diameter of a spaghetti noodle.  I hope and pray that no myeloma cells exist in the sample.

Several hours later after the fog from the morphine lifts, I head to the radiology department.  My next test is a full body M.R.I.

 I carefully lay down on my back with the thick biopsy bandage. The table is skinny and flat.  The radioligist begins snapping on my “armour.”  A large plastic unit goes over my chest and snaps down tightly. I lay my head down into a form which holds my head in place and then I’m asked if I want headphones.  “Yes, Please” I reply starting to feel a little claustrophobic as the large headphones are fit snuggly to my ears and then a large helmet like piece is snapped in front of my face.  There is a small window where I should be able to look down over my body and through a window where the radioligist will be sitting with his assistant running the scans.  Without my glasses I see nothing in the distance.  Now I can barely hear as the kind nurse places a plastic bulb attached to a cord into my left hand.  She explains if there is any problem I can squeeze the bulb and they will stop the scans and help me. 

I feel like an astronaut preparing for launch.  Except I feel plenty of gravity.  I am pushed and snapped and squeezed into this small rocket to where I am unable to move anything but my breath.  They ask, “are  you ready?  Is the music ok?”  I give a barely audible yes and they leave the room.  Now is the time to breathe.  I take a deep breath and begin counting slowly.  I focus on the numbers instead of my small quarters.  I count to seven, hold it, then blow the air out as I exhale for eight counts. 

The M.R.I is loud.  It bangs like a hammer quickly tapping out a fast rhythm.  Then silence, and then a clicking noise as the scan moves to a different position.  “Just breathe,” I tell myself over and over.  The first ten minutes are hard.  I need to cough, to swallow.  I move my head slightly and wonder if I messed up the scan.  Slowly my breathing becomes steady and controlled.  My body relaxes and my mind is free to wander.  An hour goes by and the machine finally stops.  I am freed from my space ship, and I sit up letting the blood flow to my hands and feet.  I made it through another test, and it is time to go. It is time to return home and to wait.  To wait and wonder what the results of these tests will tell. 

Finally it is Friday.   My husband and I head up to Huntsman to meet with my new oncologist.  Dr. Tricot has moved his practice to Iowa so I now see his partner Dr. Zangari.  Unlike the slow and methodical personality of Dr. Tricot, Dr. Zangari enters the room in a whirlwind.  He opens up my files, taps on his computer and begins asking questions all at once. 

After reading through lab and test results on the computer, he invites us to come over and look at the screen.  He points out the sentence from the M.R.I results and says in his thick Italian accent, “I can’t do a thing for you.”  I see the twinkle in his eye and read from the report, “no sign of multiple myeloma.”

 And my husband and I breathe a sigh of relief for another eight months!

Please pass the Catch-up

Hellooo, I'm back.  I have stopped and started several posts over the past few months.  I could say I have had writers block but my reasons for not writing have not been from a lack of what to write but rather from feeling overwhelmed with having too many things to write about.  Here are a few summaries of some of those possible posts to catch up.

Uncle Spencer 13, with Tabi, 16 months

     December: a change in meds had me experiencing extreme side effects of depression for several days.  I now understand what that black hole feels like and have gained new empathy for those who struggle with depression.  I feel much better now!

   

Elder Kelly with a family in Puerto Rico

Christmas: I had a wonderful Christmas.  My two favorite gifts inluded a phone call and skype with my son on an LDS mission in Puerto Rico...  and receiving the announcement that my son and his wife are expecting their second child. I am going to get another grandbaby next summer!

Tabi preparing to be a big sister.

   

 Good food, fun, and lots of family for the holidays.

    January.  Found out I have developed cataracts from the steriod treatments on a Monday.  On Thursday morning I could not be woke up.  When I did finally come around I had lost my hearing!   After spending several hours in the E.R.,  My hearing returned and a MRI found only another sinus and ear infection.    Strange but lucky!

    February  I am finally gaining some energy.  It feels so good to have a little momentum.  I actually deep cleaned my basement!

   Last weekend I had a visit from my cousin  who is in remission with colon cancer.  We spent the weekend talking about cancer, life, and life after cancer.  It was great therapy.  Thanks Jill!

                                                                        So here I am. 

 My body is continuing to heal and recover from cancer and chemo.  It has been a very long and winding road.

 I am learning to keep the past in the past where it belongs.

 I can't keep looking back to the pain over the past three years,  but look back only to find the progress that I have made. 

 I am learning that I have a future that looks pretty bright.  It may not be the way I planned it, but whose really is!  I can move mountains with the help of Him who created them and the love and support of family, friends.  I can move mountains with faith that the Lord has a plan for me!

  

Thanks for Loving Me Through It

Thanks Mom, Dad, Joe, Tyler, Dani, Trevor, Mallory and to all those who continue to love me through this mountain that I face.  You give me courage and hope as this journey continues.

I CHOOSE TWO

One thousand and ninty five days ago today, we found out that I had cancer.  The doctor said it was Multiple Myeloma. " Multiple what?"      "It's a bone cancer," he replied and the rest is history.......

Well it has been three years since that dark day.  I can't remember the name of the doctor, where his office was, or what he looked like.  I never went back to him because he was not an oncologist.  I can't remember what I wore, or ate, but some of the smallest details still stick in my brain.

 "Could you please write down the name of the cancer for me?"  I asked.  He tried to explain more to Joe. I remember none of the conversation. 

The memories of the day have stopped and started a million times over in my head through the last three years.

I think it is time now to decide exactly what to do with this day.

I need to decide if I should even remember it, honor it, or rip it off my calendar and tear it into a million tiny pieces never to be recognized again.

Fot the past three years, I have remembered this as a day I want to forget.

What do I do now?

 I guess I can choose two ways of looking at this day.

     ONE

 As a time to look back and focus on the disbelief, shock, and terror from the day

Shock and Terror!

Jace holding an Iguana in Puerto Rico.  Now that's scarry!

 or

Two 

I can use this day to  help me rejoice and celebrate the Mountains I've climbed,

<><> <><> <><>

Here's Tabitha enjoying Autumn and Halloween

The things I have learned.  

The people who helped me get here.

My son Jace who is serving an LDS mission in Puerto Rico

 and the Gifts of Life that God has given me each of those one thousand and ninty five days.

Tabi and I enjoying a local Halloween celebration on Main Street.
We passed out 80lbs. of candy from our martial arts studio!

Today I Choose Two!

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!

You Can't Get Better Than Zero!

The glass doors swoosh and blow a little air into my face as I leave the underground parking lot and enter the hospital headed for the elevators.  I always push the “up” button with the middle joint of my middle finger. Have you ever thought of how many germs have accumulated on those elevator buttons? ! I am much more cautious about such things now.  

No matter how many times I have entered these doors, rode this elevator, headed for floor number 2, clinic B.  I always think back of my first visit.  It has been 33 months.  Almost three years.  This place used to be my battle zone.  Today I just want to put all of that behind me.  Today I see if I have won the war.

The elevator doors open and I leave my dark memories behind.  I step into the beautiful lobby and almost feel at home as I enter the clinic.  I know many of the nurses and employees by name and even more by face.  I haven’t  been here for six months; I used to spend so much of my life here in the beginning. 

 These people know what I have been through.  They understood the fear in my eyes and the crack in my voice when I began treatment.  They have seen me at my worst.  Holding my hand and reminding me to breathe while I brace myself for the bone marrow biopsy. Drawing countless vials of blood and asking about how my family is doing; What I did for summer vacation. They remind me that I can do this. Hopefully they will see me at my best.

Maybe that is why I wore a dress to my appointment today.  Last Thursday I  went through the usual tests. (see test results on side bar)  Not that there is anything usual or common about them.  Today Dr. Tricot head of research and expert oncologist of multiple myeloma (Not melanoma) will go over test results and discuss with me the “Plan.”  (This is where Alex Trebek comes in with the music from Jeopardy.  Hum a long if you would like. Da da Da da. da da da.)

And this is what he said in his Belgium accent................."Things look perfect and you cannot get better than perfect.”   Which interpreted into Western English means.  I am done with treatment!  My numbers are doing what they are supposed to.  And to further explain he added....."You can't get better than zero!"

I am DONE with treatment

One year of not-one-but-two stem cell transplants. High dose Chemotherapy and recovery.

ONE year of Velcade (more chemo) Thalidomide, Revlimid (ugly friends that help "the velcade go down" and do it's dirty work.

ONE year of the nasty but effective steroid that helped me gain 20 lbs, chubby cheeks, and ADD. (Attention Deficit Disorder.)

So after 33 months of very aggressive treatment I am looking forward to a very, very long remission and hopeful cure.  My beloved Belgium doctor thinks that I have a good shot at it.  I'm taking his word for it.

Stay tuned: What happens now? 

And now for a little help from my friends.  How does one celebrate such an occasion?  Any suggestions from a double scoop of chocolate mint ice cream in a waffle cone to an exotic cruise on a limited budget will be considered.

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."