Im leaving on a jet plane

Just getting ready to fly out to go to Cancer Treatment Centers...HOPING for some new and and unconventional ways to fight my monster.  Today I think of Thanksgiving right around the corner!  I am so thankful for those who have joined me in my fight, for my new friends I have met that only through this crappy journey I would have.  I am so thankful for so many of my friends, but today two really stand out...I am thankful for them...For Dov who is the funniest darn person I have ever met, who takes this monster and turns it into something positive and inspires so many and for Crissy who is always thinking of others, lighting up a room with her amazing smile and the only person that can turn a hospital gown and IV into Couture clothing and accessories.

So today I give thanks for those amazing people who make me smile on days I want to cry!  I admire them so much for their strength.  I am also grateful for my affiliation with ACS's Relay for Life...that really changed me... IT has changed so many.  So this holiday season, I CHALLENGE everyone to do a good deed.  Join ACS and help with the fight.  I want to quote my friend AnnaLee who spends so much time volunteering for Relay..this is  from her amazing blog (hope its okay) "Without our time to help raise funds for cancer research, housing for cancer patients, free rides to treatment and other services the American Cancer Society offers, there would be no hope....Without our time, there is no time for the person who just heard the words "you have cancer." Without our time, cancer is a death sentence. 

So my challenge to everyone who reads this...PLEASE spend a moment to give something back to someone...be a friend for someone who needs a friend, give a ride, a hug, a card, a phone call, and make this world a little better place.

Cancer my be in my bones...but it doesn't have my soul!

A day in the life....

There are some hours where I almost feel normal.  Then many days, I feel like I am on a roller-coaster that won't stop, is stuck, and I cannot get off.  The beginning of the ride starts out slow for a while.  Then as it hits the top, gaining speed and falling fast, it feels like you are careening out of control.  That pretty much sums up living with Cancer.  The fatigue and bone pain has been worse.  I have spent quite a bit of time resting.  Not that resting is bad, but I have things I want to do, a life I want to live.

The past 3 weeks I have been on a Vegan diet and trying to follow a 21 day juice fast.  I feel pretty good until about 3:00.  By then, I am utterly exhausted.  I have enjoyed my green smoothies and the scale is showing that my body likes it too.  Down 10 lbs.

The next chapter in my journey will take me to Illinois.  On Sunday my hubby and I will fly to Cancer Treatment Centers of America.  YOU know, the one you see the commercial for on TV.  They have a very high rate of success and use traditional medicine with homeopathic and nutrition.  We are also going to get my paper and bloodwork in order to find a donor match.  I am excited for the new possibilities and scared that nothing else can be done.  Its hard to always keep your game face on.  But behind the smiles and positive thoughts, I am one very terrified person.  I am worried that maybe there is nothing else to do.  I am afraid to get my hopes up, to only be disappointed.  I don't want to fall into the category with the many who lose this battle to Leukemia. Not right now anyway.  I want to have more time to be with my kids.  More time to love my hubby and just more time to enjoy life. On the other hand I am pretty convinced that I will survive.  But its the NOT knowing that drives me nuts.  It puts mortality too close to home.  Most people at 40 do not have to think about dying for 30 or so years...but Cancer, just like the roller coaster, brings our lives to a screeching halt!

When God closes a door...

I have heard many times in my life that when God closes a door he opens a window.  In fact when I first got diagnosed with Cancer my Mom gave me a painting of an open window to remind me of just that.  After a nice little 2 foot fall off of a concrete bleacher this past weekend, I am on bed rest.  I thoroughly messed up my foot.  I didn't think it possible to bruise your entire foot.  So here I sit..3 days of nothing but bed, ice, elevation etc. my mind is on overdrive.  I have been doing a lot of reading from books I got at my recent visit to my cancer hospital.  I also have been reading about how changing diet can fix part of the problem.  However after much rest, I have come to the realization that there is only so much reading and channel surfing one can do.  I have been thoroughly inpired though.

Somone has pointed out that since school begin my blogging has been neglected.  So, for those of you who care about my recent medical discoveries, here goes!  I have not had the best news as far as my treatment has gone.  I am currently on option #3 of 3 and its sort of working.  Its destroying cancer cells, but its also destroying good cells.  I have very low lymphocytes.  I have developed other conditions as "side effects" too.  I keep positive most of the time, but the fact that I am told that I have a Rare Leukemia and that it is incurable, IS JUST PLAIN OL' NOT ACCEPTABLE!!  SO for today I chose not to accept that option.  I have been reading about natural foods to heal your body.  I am stubborn and I am going to prove them wrong.  I am a true believer that by taking a pill cannot cure what ails you.  To me its a wheel with many spokes.  Right now I have a few broken spokes.  I am going to fix what I can.  Seek out what else can work, and simply not take NO for an answer.  I DO NOT accept that I cannot be cured.  I am not willing to sit by and wait and see what happens!  I am going to find a way to crawl through that window and find a way to cure my "incurable" "rare" CANCER!

Leukemia Awareness Month!

9 months ago today I received a phone call that put all the worrying, doubt, false-hope, and fears aside that I had been stressing over for a few weeks.  My bone marrow results were finally in.  I spent the holidays very stressed out wondering if it were my last with my family.  I didn't know if I had the aggressive form that claimed the life of a cousin.  As the holiday's delayed my final cytology report, my appointment was delayed and I was eagerly awaiting my fate.  I had received part of the fax showing that some of my cells looked like AML.  Finally the pieces of the puzzle came together on January 6th when a very nice doctor called to tell me that I indeed had the Philadelphia Chromosome.  He urged me to follow up as soon as possible with my Oncologist and to begin treatment.

The day I had my first blood draw.  Little did I know that this is what Cancer looks like.

It was not quite a month earlier when I was blindsided by a phone call from my primary care nurse asking me to come in and repeat a CBC.  I was sure she was going to tell me I had diabetes.  I TOTALLY never expecting what was to come! After my blood draw she asked me to wait in a room, because my doctor would want to talk to me.  She asked if I had been very ill and treated in the local hospital?  I replied NO.  I explained that nothing other than a few bruises that don't seem to go away, the fatigue I have been complaining of for months, but nothing else seemed out the ordinary.  When Dr. Arnold came in, she picked up my new blood results and said OH crap (not the word she used.)  I joked with her that patients don't really like hearing that from their doctor.  As she explained in just a week, my cells had risen 6,000 points and asked a little of family history.  I could see the expression on her face that she was concerned (remind me to get her in a game of high-stakes poker.)  It was a whirlwind of emotions over the weekend, waiting, wondering as my blood was sent to a pathologist. First thing Monday morning my Dr. called and by noon I was scheduled to see an Oncologist in SLC on Thursday.

My husband and I traveled to Salt Lake City, where I would again be blindsided.   My grandmother had been battling CLL for over 20 years.  I was convinced I had what she did and I would be just fine.  I was examined by a PA, a nurse practitioner and finally an Oncologist trained in blood disorders.  She left the room and I turned to my husband, "She is going to come back in and tell me I am a hypochondriac."  We had discussed hopping over to Red Lobster, Christmas shopping, etc..  As we laughed my mood was suddenly and forever changed.   A knock came to my door, I was shocked when a social worker, the nurse and doctor returned.  I had a form of Myelogenous Leukemia.  She suspected it was the chronic form or the beginning stages of the Acute form, which I didn't want to have.  She answered a few questions, as I was just in shock.  I texted family and friends to let them know I had CML, with the fear of AML in the back of my head.  I was told I would return to the hospital as soon as possible and receive a bone marrow biopsy.  So much for Red Lobster and shopping.  We headed home to talk to our children and prepare for my bone marrow biopsy just a few days before Christmas.  Suddenly I was speechless, numb, and a million thoughts filled my head.  I KNEW that AML often ended lives very quickly.  A cousin had died after a 2 year battle, another cousins wife in just a month.  I was worried, shocked, and just wanted to go home to hug my 3 kids.

My bone marrow biopsy was scheduled just before Christmas.  I was told to not worry and enjoy my holidays..  YEP that was a piece of cake. NOT...  I felt like a lamb to the slaughter.  I tried to keep positive for my family, but I was worried.  On the day of my little surgery at St. Marks, we turned around less than 30 miles from home in a blizzard.  I was rescheduled for Christmas Eve and sad that I would have to travel again so decided to call around.  I found a doctor in the next town over that on occasion performed them.  WHAT a nice man he was.  He agreed to come in when he should have been beginning the holidays.  I spent a very sore Christmas Eve and the following week.  I have now learned that the front of the hip is not a fun place, however I was knocked out.

Flash forward to today, 9 months later from when that very nice doctor called me to tell me that I did have CML, I have learned now that modern medicine has taken a once fatal illness (just 10 years ago) and made it treatable with a lovely invention called Gleevec.  My journey with Gleevec was horrible.  I found friends via facebook and the Leukemia and Lymphoma Society.  I would eventually switch to a doctor at an awesome cancer hospital specializing in AML and CML.  I would also receive a much needed break from that yucky chemo and start a newer form of an oral chemo only 4 years on the market.  I would have ups and many many downs, side effects, tears, anger and MOST OF ALL HOPE.  Hope it all I have to hold on to.  HOPE, knowing that 10 years ago I would be dying and HOPE that with the invention of 3 types of oral chemotherapy in pill form, would save my life.  HOPE that I would see my 3 boys graduate from high school...HOPE that the 7 new types of medicine in the workings that a CURE would be found.  HOPE that each day I survive this horrible, crappy, disease, will be just ONE of many!

I WILL WIN!

I'M PROUD TO BE AN AMERICAN!

I have refrained from blogging for a while because my thoughts have been turned to more important things than my struggles, tests, and cancer.  I have stated before that my blog was about my Journey as I go through life battling cancer and keeping things in a positive light...however despite my struggles, my journey continues.  I have been impacted by something far important than my difficulties.  This week I learned that being a mom, a cancer patient, a wife, a teacher etc. all became insignificant and first and foremost I am a PROUD AMERICAN!     

On Friday August 5, 2011, Sgt. Daniel Gurr, USMC was killed in Afghanistan.  It seems that my entire hometowns heart was broken and everyone reached out to offer love, support, and their deepest sympathy to his family.  I may have met Daniel when he was in my moms pre-school, but other than that never really crossed his path maybe briefly at a family funeral.  My grandmother was the oldest of the Gurr children whose family settled this valley.  Daniel's mother was my EMT instructor and his Great Grandfather Earl was my Grandmothers younger brother.  I adore his Great Grandmother and was able to visit with her this past week.  It seems as time goes by and families grow, 2nd and 3rd cousins get lost in the mix of life. Even though I may not have known Daniel, HIS ultimate sacrifice will never be forgotten!

I used this situation to turn something so tragic into a very valuable teaching experience for my children.  My youngest son has always been in awe of anything military, soldiers to be specific.  My father was drafted in the Vietnam war, the man who raised me as his own served in the Navy and his father in the Merchant Marines in WWII.  My children also have a grandfather who served in WWII.  They are always asking their grandmother for memorabilia from their grandfather.  My earliest memory of what a soldier is, was when I was three years old.  I remember people in uniforms with guns as I stood along side my fathers grave at his burial.  I remember being frightened by the 21 gun salute.  I did not understand the magnitude of this and what an amazing honor this was! 

Now that I am an adult, I get teary eyed every memorial day when I see the flag decorating my Dad's grave.  I buy poppies when VFW sells them at memorial day and I tell my children the story of the poppy.  My husband says his only one regret was that he never served in the military.  I choke up every time I would hear my children sing "I'm proud to be an American" in their school choir.  My boys are scouts and place flags every holiday throughout our neighborhood and have an American flag adorned on their Scout uniforms.  Recently, my 2 youngest chose to write letters to a young man serving in Afghanistan.  I have had the honor of becoming friends with his mother, and each and every day I pray for him and our military. My middle son has decided to make care packages to send to our brave soldiers as his Eagle Scout project.  I hope to be raising my children with the love and respect for this great country I have come to know!  Most importantly, I want them to honor those who serve, have served, and are our fallen heros!

Photo Courtesy of AP

Each time I hear of a fallen soldier, my heart drops.  How saddened I am for their family and how honored and humbled I am for their ultimate sacrifice.  This past week, the first casualty since Vietnam has impacted and effected the town where I was raised and am now raising my family.  As information became available of Daniel's final arrival home, web pages, blogs, videos, photos, popped up everywhere.  Information spread like wildfire.  An entire town came together.  Firemen organized the display flags at the airport, scouts, friends, neighbors and strangers came together to display flags, ribbons and decor throughout this entire town.  Thousands of flags lined the streets, adorned the lawn of the church where the funeral was to be held, and marked the route that this great hero would travel one last time.  My children offered to help and made plans of what they wanted to do to help.  As we lined the route of the procession, my children stood silently in their scout uniforms.  They saluted the entire procession and my youngest son, when realizing a van of Marines saluted him, whispered "Mom, I'm going to be a Marine."  My heart fell as the car carrying my dear great-aunt passed in front of me where she solemnly waved at me.  How saddened I am for Daniel's friends, Marine Family, and his dear family at the loss of a son, brother, cousin, and, grandson.

My children have learned many valuable lessons this week.  Invaluable lessons in Honor, Respect, Sacrifice, Courage, Selflessness, and Service.  I have met people and made friends that I would not have ordinarily met.  First and foremost I am proud of this great county and am extremely grateful for the opportunity to be able to live in this great land.  I am honored to be a prouduct of veterans and I am humbled to know that right now thousands of men and women are living in difficult circumstances, foregoing time with their own families, and putting their lives on the line for the liberty and freedoms I enjoy.

photo taken from the AP from the Gurr Family

Godspeed Sgt. Daniel Gurr!  I am eternally grateful for your sacrifice to ensure the freedoms that your Great-Great Grandparents came to America for!

Flags lining 500 East

Flags displayed at the Vernal Cemetery

Displaying flags at sunrise with black ribbons to signify a fallen one.

going through the motions...

I couldn't think of a title for this blog.  Someone (won't say who ;) ) told me that I should blog more.  I find this somewhat difficult since I don't usually have anything profound to say.  My entire goal for this blog was to archive my journey and to keep my attitude positive. 

For the past week I have pretty much been reading, resting, and relaxing.  The 3 R's of summer.  Unfortunately this was not the the way I had imagined my summer break  (I could also add running to the restroom too... :o.)  So if you don't want any TMI don't read. ;)  After 5 days of clear liquids I am allowed to add a few foods into my liquid diet.  I spoke with my Onc's nurse and he wants me to have my Colonscopy at Huntsman.  SO now I just have to figure out how to fit it in around a schedule with someone to travel with me.  FOR those of you who have had them, I am not looking forward to the prep involved and the 3 hour drive to SLC.  I hope in my head I have imagined it to be far worse than it actually is.  I am NOW a fan of people with colon cancer.  This has been quite uncomfortable, I cannot even imagine having to do this on a long term basis.  This is not what I had planned for our summer vacation.  We were planning to go to Montana on the 5th.  Kind of sad since that will not happen now.

It is kind of interesting how our trials make us grateful for what we do have.  I am grateful that I just have Leukemia.  I am also grateful that this is my journey and not my children's.  I am also learning that someone else's struggles can be far worse than mine.  I have made a friend online whose daughter was fighting CML.  Her story particularly hit a chord with me as her daughter loved art.  On Saturday her daughter lost her fight.  She was just barely 16.  I feel so sad for her loss and what she has had to endure, and for the heartache of losing a child.

The only thing that I do know is that we are on this path for a reason.  Sometimes the path is pretty bumpy.  Yesterday as I felt pretty icky, some old movie or cartoon popped into my head.  The one where the good guy is put in a cage and the room is slowly filling with water (I really think I saw that in an old batman episode, circa 1978ish.)  Well that is kind of what cancer is like.  I feel like I am slowly sent to my demise.  In all honesty, I hate that I feel that way.  I try mostly to be positive, but in the end, that will be my reality.  Its a pretty deep subject and most people rarely think of this, until they are faced with a life changing experience.  I try not think of that, but learning you have cancer, living with cancer, or fighting cancer, it seems to always stay somewhere in the back of my mind.  I try to keep it there, but once in a while it merges forward rearing its ugly head.

The only way I can cope with this, is to know what my purpose on this earth is and to try to give it to God as much as I can.  I don't have a choice in this matter and other than taking care of myself, taking care of my family, and serving others, there is not much else to do.  I just keep plugging away.  Some days are better than others, some have tears, but mostly a lot of laughter!

In loving memory of Nayree 7-16-95--7-23-11, may you continue to paint with the angels!

The little things in life...

It always takes something little to change our perspective.  Today a new and dear friend showed up with flowers to cheer my day, I also received a note in the mail with pictures of my dad from a cousin.  Some of the pics I have never seen and it was a very nice thing for her to do.  It didn't dawn on me until tonight that maybe he's up in heaven looking down on my struggles and it was his way of showing me that he understands...and my wonderful cousin happened to come upon these pictures and thoughtfully mailed them to me.

I have been struggling with another little side effect as I have been told various times that they will come and they will go.  Interestingly enough I didn't have as many issues until summer...SO I can complain about them, but in reality I am glad its happening now while I have a chance to relax.  If not for summer I would be spending my time worrying about finding a sub.  My friend Donna once said to me that GOD gave me health issues to make me slow down a bit.  SO for the past 3 days I guess hes been trying to tell me that and I have not listened.  I try not to complain about the crappy side effects and hopefully I don't complain more than I am aware of.  I still consider myself a newbie when it comes to the side effects from the chemo and the symptoms/issues from the CML.  (Sometimes they overlap.  In my head a picture floats around of a venn diagram overlapping the two together.)  For the past 3 days I have been following doctors orders and listening to my body. Today my nurse called after putting her head together with other nurses and decided to put me on fluids and change the time I take my chemo. After just normal drinking of fluids, I started to have some severe pain that didn't subside.  SO my awesome nurse tells me to get it checked out because it could indicate something very serious ending up with me having surgery.

Photo by Julie Williams

 After a 4 hour stint at Urgent Care and a quick trip to the pharmacy, I decided to lay down, sip some fluids and rest.  I logged onto FB.  To make a long story short, a pic from a dear friend popped up in recent activity.  It reminded me of the day when Jesse was about 4.  It was a beautiful sunset with the rays popping through the clouds.  Jesse pointed and said "Look, that is where Jesus lives."   NOT sure why this particular picture hit me over the head and reminded me to just enjoy the little things.  It just gave me a little more clarity.  It brought me back 12 or so years to my sweet little boy showing me that GOD is close and watching over us.  As I looked at Julie's picture it made me aware that GOD does know my struggles and in a subtle way reminded me that HE is right here along with me on this journey.  

As a result, here I go starting a 3 day regimen of clear liquids to be followed by the BRAT diet for a while.  Its really the little things that keep me going.  In all honesty, many of these things I don't seem to take the time to notice.  SO I guess now I am listening.  The house can wait, the yard can wait, laundry can wait. Cancer WON'T wait and its time to just relax and enjoy a few days of taking care of me.  SO for now I am grateful that I don't need emergency surgery and  was able to realize that GOD is just telling me to slow down.

Ups and Downs

So, I have been feeling a bit out of sorts the past few days.  I tend to forget when I feel good that feeling bad is part of the battle. Last week was a pretty good week and a great weekend.  I am back to the 12 hour nights and even took a 2 hour nap.  I feel guilty when I sleep so much, but pretty much know my body is doing what it is supposed to.  Trying to find balance and a simple routine is pretty hard.  Also, for the first time in almost 7 months I feel a bit depressed.  In part because I am watching someone very dear to me lose his battle with this horrible disease.  It really brings the mortality of cancer right in front of my face.  So maybe for the first time I have allowed the thought to creep in that I may not win this one either.  I have always been a go getter, but I am finding that its harder to keep going.  BUT like the little engine that could...I keep chugging away, climbing that mountain.

Last week I was able to see my awesome regular doc. for the last time.  She has had my back for 2 years, listened to my complaints and I am forever indebted to her for having the forethought to run a CBC.  I know without a shadow of a doubt that I would have not followed through until I became very very ill!  For 3 months, I had chalked it up to my RA, Fibro, work, life, etc.  Never in a million years would I have thought that I would be down the Leukemia road.  I am so Gonna miss you Dr. A!

James fishing!

Jaydon and Carter...finding worms to fish with

Jesse and Dakota Chillin on the mountain

I had a wonderful time at my family reunion and it was great to see everyone.  I loved being in the mountains, out of the heat, and away from everyday life.  It was great to be up in the mountains and get a little fishing on.  My kids had a great time.  After all the rain we have had, there are puddles everywhere, but TONS of beautiful wildflowers also.  Makes me wonder what life would be like without the simple things like an azure blue sky, a brilliant variety of wildflowers, and my family!  Trying to find the silver lining in the clouds can be hard at times.  Trying to be patient when my body isn't cooperating is tough also.  WHAT I do know is that even though my "magic pill" is crappy at times, it is extending my life.  I have to look at the bright side when life is hard.  The road is bumpy and rough...but in the midst of it there are wildflowers, beautiful blue skies, and 3 amazing boys that I fight for!

Pondering thoughts

Sometimes finding the silver lining in the clouds is rough.  Being able to find a happy medium can be somewhat difficult.  It has been two awesome weeks of a little get away with my boys, working in the box office for the play, and tackling normal life activities.  However there are some downsides to all of this.  MY body is getting even.  I am back to sleeping 12+ hours a day, my chemo regimen is off, as well as the summer heat has me butt dragging.  My lymphocytes are still running high. 

But when I think of how crappy I feel, I think of my uncle who is battling Stage 4 Lymphoma.  My mother and aunts are his 24 hour a day caretakers, and he is on hospice.  I also cannot help to thing of those many millions of Cancer patients who have lost the battle to this terrible disease.  Being exhausted is one thing by losing this battle is another.  I may feel crappy, but I am not losing.

I am asked on a daily basis how I cope so well, or I get commended on my attitude.  Well today its not quite up to par.  I dont have the energy to do much more than rest.  The house looks like a tornado hit it and the basement is the bottomless pit of boy stuff.   BUT I will keep plugging along. Thinking of the positive keeps me afloat.  I have amazing friends with their unfailing love, devotion, and friendship.  I have 3 boys who even though they drive me crazy are truly wonderful!  Most of ALL I have a husband who goes to work for 12 hours at a time and NEVER ever complains how hard he works or how little I do when I don't feel well.



 

NO coincidences.

Amie, ME, and Mary Kay

 
I am a firm believer that there are no coincidences in life.  After having a great weekend in SLC with my two youngest boys, I had decided to stay over and make a trip to up to Huntsman.  I have shared my story of "the Chemo Bunny."  After I had my blood draw, weight, and blood pressure, I asked my nurses if they have seen him recently and was told NO.  So I decided to head right on over to infusion and leave one of my FightStrong bracelets for him.  When I asked at infusion, the receptionist says...OH yes, and hes here today... Really??  WOW I was so excited and surprised...and she said "you ought to see what he's wearing today, his shirt says BLEEP CANCER, I'm going running.  SO when I walked back to infusion standing right in the middle of a crowd was my HERO, once again spreading sunshine to others!  He greeted me with a hug and we chatted for a minute.  My boys and I were able to pass out more bracelets to other patients while infusing.  I thoroughly believe this journey we are on is all about interaction with others!  HOW awesome is that, that when I decided on a stay over trip, my friend would be there in his (BLEEP) Cancer shirt and all!
 
It was also awesome to see the two amazing women who have encouraged me along, listened to my fears, made me laugh, and KEEP me alive.  MY heart was full when my 9 year old hugged my Nurse and said "Thanks for keeping my mom alive."

MY TWO awesome Nurses with my Boys

James, Amie, Jaydon, and MaryKay

A Father's Day Blog..2011

I have had a few ask me if I have updated my blog.  I am not one of those diligent people who blog on a regular basis.  In fact I think its pretty close to a miracle that I even have a blog at at.  I started this to archive my journey with CML, but am finding that even though I am fighting Cancer, the journey is about me, a person, a mom, a teacher, a sister, a daughter, and a friend.  The CML is just one part of who I am.  I am made up of many different facets and the Leukemia is just part of it.  I also think sometimes that I don't have anything to blog about.  I wait for some epiphany or some amazing story to happen in my life.  In all reality, its about the little things.  The interactions with others, the stranger who smiles at you in Wal-Mart, or the random person who you strike up a conversation with is the stories that I need to blog about I cherish every relationship I have, whether it be from the Pharmacy tech. who asks how I have been feeling, my family who inspires me, or the random stranger I strike up a conversation with.

Last week I attended a conference for teachers.  I love the creative juices that begin flowing.  I love the ideas that suddenly pop in my head.  I also love the networking I receive and being able to go with friends and just have fun.  I think sometimes I laughed so hard that it hurt.  In my journey I have made a new friend.  She inspires me with her unfailing cheerful attitude.  She always has a smile or kind word and if you ever take her shopping you better have some stamina for power shopping. ;)

Today we celebrate Father's day.  I cannot help but think of my dad who died when I was not even four years old. I know its a sad day for many who miss their fathers.   I also went to visit my Dad (step-dad if you get technical, but to me, hes my Dad) and I felt very sad for him as this is his first Father's Day without his Dad.  Tomorrow will be the memorial service for my Grandpa Clark.  I cannot even imagine the pain and loss my Dad is feeling.  I have mourned a child, and most recently mourned the fact that Cancer has effected my life.  I on the other hand have NO clue what he is feeling.  I don't have the words to console him other than a hug and telling him that I am sorry.  I did take him some homemade noodles, and in my way, giving him comfort food is how I comfort.  It was also nice to do a good deed.  I took a pot over to my brother-in-law who just underwent an appendectomy and made some apple crisp for my grandpa.  Giving to others always makes me feel good.

I have learned in my life, that when you feel good, you give service to to others.  I have also learned that when you feel bad, you give service to others.  SO today I felt pretty good.  I am tired, which I am used to but I feel pretty good.  I am blessed to have 3 boys and a loving husband.  So as we celebrate Father's all around today, I celebrate one more day that I am here to wish those around me a "Happy Father's Day."

Relay for Life....changed my life

When I joined a relay team I had no clue the impact it would have on me.  I wanted my own team, but I also know my limitations and the weakness the chemo inflicts on me.  I know the turmoil one feels to hear at the age of 40, you have a rare type of leukemia.  I have cried, listened to my children cry as they worry about me, and cheerfully fight the best I can.  I have been so extremely ill that I had to crawl to the bathroom and drinking water has been a major feat. So I know firsthand how horrible this ordeal can be.  I wanted to do something, make an impact, and fight!

ME...the CML Warrior

So, I joined Simplot's team.  A great team with a bunch of awesome people working their butt's off to raise money for ACS.   I recruited my awesome little sister and my cousin.   I started pretty late in the game, bur for 5 weeks, I asked for donations, sold bracelets and sent numerous emails.  I had a luminary party and with my sister and friend we made luminaries to honor our loved ones fighting and one for Johns uncle who lost his battle.  When the day arrived I eagerly began my new journey as a "relayer."  So, for an amazing 24 hour period, I was delivering balloons, decorating, getting prepared, celebrating, walking, and helping clean up.  My time walking and celebrating was spent thinking of others, especially my Grandma, Grandpa, and Uncle fighting and my uncles and cousin who have lost their battle!  I also met so many awesome fighters and supporters.

My joy was when my dear friend who has supported me from day one, lead an amazing group of our students in the choir she began at our school.  Her tiny speech of how Cancer was personal to us because of my battle made my heart burst!   I did not know how many people were watching, but when she had me stand up I could barely see through the tears as their performance was dedicated to me!  I am humbled and extremely honored!  At the end of their inspiring and emotionally moving performance I went to congratulate them.  IT was one of the most moving moments of my life, when an impromptu group hug of about 25 of my students embraced me!  There are NO words to explain what I felt.

I made my first survivor lap and it was a joy as I tried to think of the past 5 months I have battled this monster trying to take over my body!  I was overjoyed and touched by emotion as I watched so many people walk.  As my husband met me on the other side, I realized it was just part of this journey.  What a great strength SO many people are.  I was in awe as I saw people pushing walkers, wheelchairs, holding small toddlers fighting, and children battling, all walking together for an amazing cause.  My favorite was the lighting of the luminaries and my chance to think about my family fighting and why I fight: for an amazing hubby and my 3 boys.

As the night ended and dawn broke, survivors, fighters, and supporters kept walking.  I saw many limping, hobbling, and running.  Again, ALL for an amazing cause.  As the relay closed I felt triumphant and pretty darn tired too.

Honoring my Grandma, Grandpa, and Uncle ALL fighting!

I learned that I am stronger than I thought and this journey we are all one is truly an amazing one!  I cherish each moment I have and am in awe and encouraged by all of those fighting!

A bump in the road

Some days I think I am Super Woman.  I forge on ahead not giving Leukemia a second thought.  Then there are days where I am knocked down a notch or two.  This past week has been a chore.  I kept my "game face" on, but I have had a major bout of fatigue, nausea, and headaches.  I feel like a failure when I complain, but trying to look like I feel good is a major chore.  It seems like everyone I run into tells me how good I look.  REALLY?  I feel like a ginormous dog turd..but okay then...  BUT my highlight of the week was when ran into someone and she was asking about how I was doing and what my symptoms were and what the chemo/treatment is doing to me.  I was explaining what ordeal I have gone through, still sugar coating it, because the reality is sometimes devastating.  Another person in the room who knows my family says "OH really I didn't know you were that sick?"... I had to choke on my laugh..  YEP I am sick its called Cancer..DUH  Which makes me think...What is a person with Cancer supposed to look like?  I have spent many an hour in the waiting room as one by one Cancer patients are called back for blood-work and to see their doctors.  In all reality the majority of them look healthy. 

So this morning, after looking at a pile of hair on the bathroom floor I decided to go for it and shave my head... WELL not really.  Luckily my hairdresser Angie is looking out for me and refused to shave me bald.  It does bring a huge question to my mind...HOW long with the hair loss last?  I am told that most of my  hair will not fall out, but seriously I feel like I have lost half of it already.  Not that this would even make sense but my head/scalp hurts.  I cannot explain the pain, but its just this annoying pain.  It sort of feels like a huge bruise that when you touch it, its sore and tender. 

OH, did I mention that if its not falling out its going white...NOT just a pretty silvery gray...but pure white.  So not only am I losing my hair, what I get to keep is white.  My son even commented the other day asking what the heck happened to my eyebrows and also forbade me to NOT be like those creepy ladies who draws theirs in.  In addition, I am getting a funky rash again.  NOT gonna complain about this one little bit.  If you know me well then you have heard about my lovely Gleevec rash, or should I say horrible hives!  So this little speckling I will gladly take over the hives.  Just a little shocked that after 3 months on the Sprycel, I still have crappy side effects that my Oncologist says will not go away ever...woo hoo I get to look forward to feeling crappy forever..  Seriously though, I have to look on the bright side.  It could be worse..  SO I put on my happy socks and keep smiling...NOTHING else I can do to fix it, so I just have to embrace it!

I am really truly grateful for my million dollar pill.  Albeit the side effects are crappy, I get to live!  Yep its a crappy chemical and I am pretty sure that down the road some part of my body will fail due to it, but as for the CML, this bio-hazardous waste is going to keep me alive. (stolen from my friend Michelle ;)

The Joy is in the Journey

My entire life I have heard that nothing comes easy.  I have also heard that there is joy in the journey.  Now one would think that Leukemia would be a horrible thing (it is) and being diagnosed with it would be the end.  Well its not. Not right now anyway.  Nobody really knows what the end is.  I have been praised that I am so strong.  THAT for sure I can tell you I am not.  However the one thing I have been greatly blessed with is faith.  I know that no matter what happens, how the chips will fall, I will be okay.  NOT because I am strong.  Because I know who I am, I know where I came from, and I know that I am well taken care of! 

I want to share a few little stories about this journey.  As I sat waiting in the waiting room for Clinic A at Huntsman engrossed in my book, I was interrupted by a Happy Easter.  As I looked up from my book it was all I could do to not break out in hysterical laughter.  In front of me stood a man I would say in his early to mid 30's.  He was wearing a pink satin bustier and bunny ears carrying a basket of candy.  The interesting thing is that he was on infusion.  Infusion is the fancy word that we all in the world of cancer know as basically hooked up to an IV pole with Chemo which for most is a 4 hour a day ordeal.  As he walked around the waiting room wishing others happy Easter, toting his iv pole, the entire mood was lifted.  We were enclosed by glass windows where outside it was stormy, gray, and snowing.  Instantly this man brought sunshine.  I watched him as patients asked him to pose for pictures, others shook his hand, nurses commented and all I could think is there is a man who is definitely making lemonade out of lemons.  After he made his rounds he came over to talk to me.  I commented how amazing he was.  We chatted for a while where he told me of his 3 year battle against colon cancer.  He said that he couldn't just sit around he had to do something.  In making himself feel better, he was adding a ray on sunshine to others.

As I sat in Stake Conference on Sunday a speaker said.."Happiness is a state of mind, it is something that we choose."

The journey is rough and bumpy there are a lot of dark horrid clouds hanging over.  My new 'instant happy" are fun socks.  HOW can you have a bad day when you start it out with something fun, bright, and happy?

In the beginning....

Here is my first attempt at blogging.  I am not a professional writer or even a blogger.  My reason behind my blog is to archive my story.  I have no agenda.  I am pretty clueless about blogs and have no clue who will even find the time, energy, or desire to even read my ramblings... THIS is about me and my daily life..   On December 13th 2010 I saw an Oncologist for the first time.  She told me that she thought I had Chronic Myelogenous Leukemia.  From that day, I have been on an up and down battle.  Some days I feel like I am in an elevator on the top floor of a 100 story building, only to plunge to the ground floor in 2.2 seconds.  Other days I feel like I have no worries, grateful for each moment God allows me to be alive and fight this disease.   I make no excuses for what I am about to say, no apologies if I offend...  I have no clue why I have CML, I don't know how long my life will be or what the future will hold.. This is my therapy, my trials, and my Journey... My only advice...hold on and enjoy the ride.