Life as I NOW know it

Cancer Treatment Centers of America

Obviously I don't blog nearly enough.  This has been pointed out to me also.  Its been a rough year and I've tried to keep it positive and keep most of my grief, whining, and crappy-ill days to myself mostly and put the edited version on facebook. LOL.  We lost my uncle to the big "C."   We also lost my grandfather 6 months later.  I learned of a little boy fighting ALL, and have been so touched to offer what support I can.  It has been brief, and not as much involvement as I would like due to my own life and issues.   I have a dear friend struggling and having her own issues, and another family member just starting her journey in her treatment.  This road is very bumpy, unpredictable, frustrating and if we keep an open-mind, look for the good, it can be uplifting.

 Life changes and my new routine is to do the things I need to do, be a more active and involved mom, and rest. It seems that is my YO-YO.  DO what I can, then rest to recover from it. FOR all of my fellow warriors, YOU know exactly what I mean. Its stressful at times and the pressure and expectations I put on myself trying to wear all the hats that I want, often sets me up for disappointment and failure.  If I push too much, it lowers my immunity, I get sick, the migraines get worse, the bone pain is horrible, and the only thing I can do is rest and sleep.  Ive never been an exercise guru, but when running the vacuum is all the energy you have, its frustrating.  I had to come to the realization that giving up a job I loved so much was in the best interest of my health.  Making changes are hard and hurting during those decisions are even harder.

THIS road is very unpredictable.  There will be a day where I have an abundance of energy (mine is usually followed the day after my B-12 shot)  SO I do everything I can on that energy-surge day.  The following day I have to taper off my activities and allow time to rest. I also took the advise of my amazing Naturalpathic doctor and had allergy tests.  My allergies went un-noticable prior to my diagnosis but have became severe.  I now get weekly allergy shots.  SO far I have not noticed any change but am told it could take years to build it up.  I have also enlisted an amazing medical team.  I have a wonderful PCP, love my Onc, and my nurse, and only seek specialists when I have issues, such as my kidney issues and allergy/sinus issues.  THEY are my team.  I had to discover this the hard way, but I think of it like I am running a company, I am the CEO and they are my staff that I seek for advice to run my company.

NO Crista, We were not conspiring in the bathroom ;)

I am getting used to my new normal.  For me, I have found that keeping a routine, but being very flexible, and open and to just saying  "HECK with my plans today and I am doing nothing" is OKAY, and ACCEPTABLE. I no longer allow myself to feel guilty because the laundry did not get done, or we ate cereal for dinner, or my kids were disappointed because we did not go get ice cream.  My kids are older now, but I have reverted to camping out in the living room, all piling in my bed to do homework, or just snuggling.  They are learning responsibility and I am not a bad mom is they have to do laundry, help prepare dinner, or do more chores.  WHEN I feel bad I call all 3 of then for a group hug and summon a little more strength through love and laughter.  I am learning that even my 17 year old will participate.  I think the next time I feel sick we are going to regress back a few years and make a blanket fort in the living room! 

So many people ask me how I do this, how I stay positive, and tell me I am an inspiration.  I HAVE NEVER EVER EVER set out to be an inspiration.  It is what I have to do to keep motivated, its my "survival of the fittest" if you will.

My POSSE

I do my fair share of complaining.  I feel that sometimes I just need to whine. I have a support system who I am sure at times gets tired of my whining.  My BFF gets texts and emails.  My newest friend always responds with "Oh shoot" and usually tells me a funny story and then like two naughty schoolgirls we may go off on an inappropriate conversation or tangent.   I however, do NOT, and will not wallow in self pity.  This is my path.  I do not like it.  I hate the fact that I have to take a daily pill that will likely cause major issues down the road.  I have monthly blood draws, bi-monthly EKGS, other tests and get sick frequently.  I am intolerant and have severe side effects.  My oral-chemo has only been on the market 5 years.  Who knows how long until damage shows up.  We hear so many times, the Cancer wont get you, the treatment will.  SO maybe that is part of the reality.  But its not TODAY.  I am alive, I will thrive.  Even it it means I spend the day doing nothing productive other than reading, emailing, and watching movies. 

THE JOY in LIFE to to Raise my boys!

I have truly found that FAITH and Prayer are my key to strength.  I look for joy in the little things.  I always seemed to miss it before, because I was too busy with work/school and life.  The house had to been clean, laundry done, and dinner cooked.  My kids grew up so fast and I think I missed so much.  NOW I dont take one single second for granted.  I was so blessed to watch my 11 year old fly in a plane and actually sit in the pilot seat and do most of the work.  THOSE amazing moments are priceless.  I wouldn't miss it for the world.  I do not know my path as none of us do.  I do know this; I am priceless, people are the biggest gift ever, and the road is bumpy.

I am different. I do not have the same sense of self. I have come to recognize this and embrace it.  When I was first diagnosed I was so positive (to everyone around me, and scared to death inside.)  The not knowing killed me.  The changes I experienced, the learning how to advocate, bug my doctors, find different doctors, seek out my options, and learn to live with a chronic condition was very hard.  After a year and 4 medication/dosage changes, 3 oncologists, and being vocal, I have learned that my transformed self will be even better.

I fought it.  I hated the fact that on any given day my GI issues, would take over.  I would wake up in pain at 3am, nausea is worse than any morning sickness I ever had.  Side effects are unpredictable and I am more sensitive to other health issues.  Finally I just have to give in to these changes, accept them, and edit my daily routine/schedule accordingly.

Will my Fellow "CML Sisters" Fawn, Ashley and Me.

My daily routine is to get up and HUG 3 boys (even the nearly 18 year old who resists) Kiss my amazing husband, and TELL everyone that means something to me how important they are.  I hug a little tighter to my Mom, Sisters, Gram, Aunts, Cousins, family and friends.  I cherish these people.  I visit my old place of work and am overjoyed by the hugs my former students give me.  I am blessed abundantly.  NO matter how bad I feel, or sick I am, or how non-productive I am, I give myself the permission to THRIVE.  I stay home when I am sick and I dont let others see this.  If I spent 4 days a row in bed, so what.  On the 5th I get up, put on my make-up, dress in something that I feel happy in and show the world that this MONSTER WILL NOT WIN!!!!

Adding JOY by delivering 100 boxes to Primary Children's Medical Center

The only issue I struggle with is dealing with others who are ill or newly diagnosed.  I deal with them personally fine and offer what support and help I can.  But when I am alone and ponder their situation, my heart aches for them.  I feel guilty when others are sicker than me.  I want to take away their pain, I want them to survive and live.  Recently a death of a colleague hit me so hard.  SHE was so strong, so amazing, and fought so hard.  

I thrive on survivor stories and their successes and their hope gives me new strength.  Especially on those hard days.  A friend is now in remission, another is having a baby, another who was told she needed a transplant is responding to a trail medication.  In the midst of the dark side of  SCHMANCER there is HOPE and JOY.  I have a whole new community of friends, who inspire, support and give me strength.  On any given day someone will randomly share their story and inspire me.  Someone will call or email or text.  PEOPLE care.

That is enough for now.  Thank you for reading.  GO spread some joy, hug someone, tell someone you love them and take care of you!