I was asked to speak during the Luminaria ceremony for Relay for Life.  I had several tell me they couldn't make it, as well as some of my family...so I figured since its been forever since I blogged, I would post my speech here.

"I am a mom, a wife, a sister, daughter and friend and I am fighting CML..  I was diagnosed not quite 17 months  ago, and it has been a bumpy road, with difficultly taking daily chemotherapy, and all the baggage that comes with a Cancer diagnosis.  But on this bumpy road I have been inspired, lifted up, supported, and understood. My family, friends, co-workers and students have supported me.   I have a whole new group of friends  whose courage, and strength lift me up on the dark days and make me laugh and appreciate what a precious gift each day is.  I have learned how precious my loved ones are and how  amazing my fellow survivors and new group of relay people truly are! 

Last year I did not know much about Relay.  I joined team Simplot (where my husband works)  I was so impressed how I was welcomed with open arms and how passionate my fellow team-mates were about this cause. 

A great surprise from my friend.

My two boys tired from a night at Relay

HOPE

As I made my first survivor lap I didn't know what to expect.  As I started the lap I pondered the previous 5 months I had battled this monster trying to take over my body!  I was overjoyed and touched by emotion as I watched so many people walk.   It was a healing and indescribable experience for me.  I was in awe at the large number of people walking.  As I walked, I read the luminaries one by one, pausing to remember those lost and saying a silent prayer for each one fighting.   As I walked I discovered why I Relay: for my husband and my 3 boys.  I relay for a future with NO Cancer.  I relay to help the thousands of survivors and caregivers to help raise funds to help other cancer patients in our community, to educate about cancer,  and for funding medical research in the hopes, that one day NO child, mom, dad, or loved one will have to hear the words YOU HAVE CANCER.

The lighting of the luminaria was my favorite part of relay, it gave me an opportunity to reflect on my journey and to remember and honor my family members who have fought, and are fighting.

I just learned the history of the Luminaria.  Although the exact origins are unknown, we do know this central ceremony and addition to Relay For Life came about almost by accident.  A committee was getting ready for their first Relay For Life event.  They had arranged for lights but discovered at around noon on the day of the event that the lights were not going to work.  As you can imagine, the committee was in a scramble.  Luminaria is a custom in New Mexico where bags are decorated and lit around the Holidays.

My amazing Grandmother fighting CLL for 20+ years

One of the committee members had the idea of lining the track with Luminaria bags as a way for participants to see the track in the dark.  The committee immediately ran out and got what they needed to implement the “luminary light” idea.  When they lit the candles in the bags that night it changed the atmosphere at the track.  The soft lighting was conducive to talking about why everyone was there – to fight cancer and honor those who had won the battle. 

In memory of my uncle who lost his battle after 8 years

The success of this idea spread quickly and soon the development of an entire ceremony around this idea was created.  Everyone who took part in the newly created luminaria ceremony was deeply touched.

In Memory of my Grandfather

Whether they have won their battle, currently fighting, or  have lost their life because of cancer, Luminaria are symbols of Hope found at every Relay For Life event. The light inside each Luminaria represents a life, which shines with the Hope  for a cancer-free world.  This Ceremony is a ceremony of remembrance.  It is a way to honor survivors and those who have lost the battle to cancer. It is a time to grieve for those we have lost, to reflect on our own journey or loved ones cancer experience, and to find hope that tomorrow holds the promise of a cancer-free world. "

Taking it as it comes...

Its been a very long time since I have blogged.  This has been a tough battle.  I figured after a few months on the chemo I would be all better and life would return to normal.  Well, it really hasn't.  My doctors tell me that about 1/4 of CML patients do not tolerate the available treatments, and I seem to be in that category.  I kind of took a back hill slide.  I was told by my Doc. at CTCA that I have a terminal illness and just enjoy my life with the new treatment available to prolong my life.  I look at each day a gift.  Had this been 2001, one year after diagnosis, I would more than likely be going on hospice.  Today I am alive.  I suffer from a myriad of side effects as well as having an auto immune disorder, which I was recently told is attacking my immune system because my Chemotherapy is an immuno-suppressant. INSPITE all of that, I KEEP FIGHTING! I am going to live and enjoy each day to the fullest!

I can dwell on my discomforts, whine about my side effects, (don't get me wrong, I do my fair share of complaining) and be depressed at my decline in health.  Some days, its difficult to get out of bed.  If I have to go to a Doctors appointment, run an errand, keep up with the house, or anything other than resting, its very taxing on me, but I cannot roll over an play dead.  I just do what I can and leave the rest. 

I am NOT alone in this journey.  I have an amazing support system.  I have a group of amazing ladies that I call my "Cancer Posse."  One in particular is fighting this crappy battle along with me.  She possesses more grace and dignity and an amazing attitude than I have ever seen in a "well" person.  I have also been so blessed to have a new family of "cml'ers" who share my struggles, share our triumph's, and are always willing to play the amazing game of "who has this side effect!"  Unfortunately our prize is a healthy dose of a TKI.  I also have been blessed to share in this journey with one amazing chick who I think God somehow cloned another feisty red-headed teacher and mom of boys who coincidentally share a diagnosis date with.  All of these people are new to my life due to CML.  Its so amazing to have these people who just "understand" this rocky road.

In addition to the new people in my life, I have been blessed with amazing people (family and friends) who offer to help me whenever I need it.  My awesome boss has shown so much support and compassion through this struggle.  I have a loving, hard-working, and ever positive husband who always keeps my spirits up.  He also gives me a bunch of razzing over my thinning and almost completely now gray hair.  He loves to poke fun of my night sweats and tell me its just because I am an old lady going through menopause.  But, he rubs my back, gets me drinks, scratches my head when it drives me nuts, and is the most wonderful caretaker ever.  I have 3 wonderful kids who do an abundance of chores, eat cereal, mac and cheese, and ramen.  They never complain about cooking for themselves!  I have a sweet teenage girl who brings me flowers, naps on my couch or lays down alongside me to visit and cheer me up, she always puts a smile on my face!  I have and abundance of amazing  family, friends, co-workers, and church members who pray for me constantly, offer encouragement, and would do and give anything I need.

I think of the new Martina McBride song.  Yes its about a lady suffering from Breast Cancer...But I apply it to me, because I have a myriad of angels on this earth who constantly "love me through it."

Yes this battle is crappy.  I have an unstable immune system, suffer daily from debilitating side effects. I have exhausted two of the three treatments and showing intolerance for the third.  In a recent letter summing up my illness and prognosis, my doctor states that "Jamie's long term chemotherapy suppresses her immune system potentially putting her at risk for various communicable diseases.  Due to her suppressed immune system and suffering from frequent infections, migraine headaches, bone pain, gastrointestinal complication, and extreme fatigue, there is a decrease in her quality of life.  At this time Chronic Myelogenous Leukemia that is intolerant to medication is deemed untreatable and is terminal.  I believe unfortunately, this is the direction of Mrs. Toftum."

So thats kind of grim, but I am gonna keep on fighting through the crappy days.  So what if my house is a wreck, or I have to take a nap to get enough energy to drive my kids to various events.  Yes my kids complain about my embarrassing mask I have to wear in public..but first and foremost I have today.  I am alive today.  The cancer cells are mostly suppressed and have not begun to grow! 

I have so many wonderful people that bless and enrich my life and "love me through" this!  God bless you all for your love and support!

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.