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.