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?