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!