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.