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!

 I was asked to speak during the Luminaria ceremony for Relay for Life.  I had several tell me they couldn't make it, as well as some of my family...so I figured since its been forever since I blogged, I would post my speech here.

"I am a mom, a wife, a sister, daughter and friend and I am fighting CML..  I was diagnosed not quite 17 months  ago, and it has been a bumpy road, with difficultly taking daily chemotherapy, and all the baggage that comes with a Cancer diagnosis.  But on this bumpy road I have been inspired, lifted up, supported, and understood. My family, friends, co-workers and students have supported me.   I have a whole new group of friends  whose courage, and strength lift me up on the dark days and make me laugh and appreciate what a precious gift each day is.  I have learned how precious my loved ones are and how  amazing my fellow survivors and new group of relay people truly are! 

Last year I did not know much about Relay.  I joined team Simplot (where my husband works)  I was so impressed how I was welcomed with open arms and how passionate my fellow team-mates were about this cause. 

A great surprise from my friend.

My two boys tired from a night at Relay

HOPE

As I made my first survivor lap I didn't know what to expect.  As I started the lap I pondered the previous 5 months I had battled this monster trying to take over my body!  I was overjoyed and touched by emotion as I watched so many people walk.   It was a healing and indescribable experience for me.  I was in awe at the large number of people walking.  As I walked, I read the luminaries one by one, pausing to remember those lost and saying a silent prayer for each one fighting.   As I walked I discovered why I Relay: for my husband and my 3 boys.  I relay for a future with NO Cancer.  I relay to help the thousands of survivors and caregivers to help raise funds to help other cancer patients in our community, to educate about cancer,  and for funding medical research in the hopes, that one day NO child, mom, dad, or loved one will have to hear the words YOU HAVE CANCER.

The lighting of the luminaria was my favorite part of relay, it gave me an opportunity to reflect on my journey and to remember and honor my family members who have fought, and are fighting.

I just learned the history of the Luminaria.  Although the exact origins are unknown, we do know this central ceremony and addition to Relay For Life came about almost by accident.  A committee was getting ready for their first Relay For Life event.  They had arranged for lights but discovered at around noon on the day of the event that the lights were not going to work.  As you can imagine, the committee was in a scramble.  Luminaria is a custom in New Mexico where bags are decorated and lit around the Holidays.

My amazing Grandmother fighting CLL for 20+ years

One of the committee members had the idea of lining the track with Luminaria bags as a way for participants to see the track in the dark.  The committee immediately ran out and got what they needed to implement the “luminary light” idea.  When they lit the candles in the bags that night it changed the atmosphere at the track.  The soft lighting was conducive to talking about why everyone was there – to fight cancer and honor those who had won the battle. 

In memory of my uncle who lost his battle after 8 years

The success of this idea spread quickly and soon the development of an entire ceremony around this idea was created.  Everyone who took part in the newly created luminaria ceremony was deeply touched.

In Memory of my Grandfather

Whether they have won their battle, currently fighting, or  have lost their life because of cancer, Luminaria are symbols of Hope found at every Relay For Life event. The light inside each Luminaria represents a life, which shines with the Hope  for a cancer-free world.  This Ceremony is a ceremony of remembrance.  It is a way to honor survivors and those who have lost the battle to cancer. It is a time to grieve for those we have lost, to reflect on our own journey or loved ones cancer experience, and to find hope that tomorrow holds the promise of a cancer-free world. "

Taking it as it comes...

Its been a very long time since I have blogged.  This has been a tough battle.  I figured after a few months on the chemo I would be all better and life would return to normal.  Well, it really hasn't.  My doctors tell me that about 1/4 of CML patients do not tolerate the available treatments, and I seem to be in that category.  I kind of took a back hill slide.  I was told by my Doc. at CTCA that I have a terminal illness and just enjoy my life with the new treatment available to prolong my life.  I look at each day a gift.  Had this been 2001, one year after diagnosis, I would more than likely be going on hospice.  Today I am alive.  I suffer from a myriad of side effects as well as having an auto immune disorder, which I was recently told is attacking my immune system because my Chemotherapy is an immuno-suppressant. INSPITE all of that, I KEEP FIGHTING! I am going to live and enjoy each day to the fullest!

I can dwell on my discomforts, whine about my side effects, (don't get me wrong, I do my fair share of complaining) and be depressed at my decline in health.  Some days, its difficult to get out of bed.  If I have to go to a Doctors appointment, run an errand, keep up with the house, or anything other than resting, its very taxing on me, but I cannot roll over an play dead.  I just do what I can and leave the rest. 

I am NOT alone in this journey.  I have an amazing support system.  I have a group of amazing ladies that I call my "Cancer Posse."  One in particular is fighting this crappy battle along with me.  She possesses more grace and dignity and an amazing attitude than I have ever seen in a "well" person.  I have also been so blessed to have a new family of "cml'ers" who share my struggles, share our triumph's, and are always willing to play the amazing game of "who has this side effect!"  Unfortunately our prize is a healthy dose of a TKI.  I also have been blessed to share in this journey with one amazing chick who I think God somehow cloned another feisty red-headed teacher and mom of boys who coincidentally share a diagnosis date with.  All of these people are new to my life due to CML.  Its so amazing to have these people who just "understand" this rocky road.

In addition to the new people in my life, I have been blessed with amazing people (family and friends) who offer to help me whenever I need it.  My awesome boss has shown so much support and compassion through this struggle.  I have a loving, hard-working, and ever positive husband who always keeps my spirits up.  He also gives me a bunch of razzing over my thinning and almost completely now gray hair.  He loves to poke fun of my night sweats and tell me its just because I am an old lady going through menopause.  But, he rubs my back, gets me drinks, scratches my head when it drives me nuts, and is the most wonderful caretaker ever.  I have 3 wonderful kids who do an abundance of chores, eat cereal, mac and cheese, and ramen.  They never complain about cooking for themselves!  I have a sweet teenage girl who brings me flowers, naps on my couch or lays down alongside me to visit and cheer me up, she always puts a smile on my face!  I have and abundance of amazing  family, friends, co-workers, and church members who pray for me constantly, offer encouragement, and would do and give anything I need.

I think of the new Martina McBride song.  Yes its about a lady suffering from Breast Cancer...But I apply it to me, because I have a myriad of angels on this earth who constantly "love me through it."

Yes this battle is crappy.  I have an unstable immune system, suffer daily from debilitating side effects. I have exhausted two of the three treatments and showing intolerance for the third.  In a recent letter summing up my illness and prognosis, my doctor states that "Jamie's long term chemotherapy suppresses her immune system potentially putting her at risk for various communicable diseases.  Due to her suppressed immune system and suffering from frequent infections, migraine headaches, bone pain, gastrointestinal complication, and extreme fatigue, there is a decrease in her quality of life.  At this time Chronic Myelogenous Leukemia that is intolerant to medication is deemed untreatable and is terminal.  I believe unfortunately, this is the direction of Mrs. Toftum."

So thats kind of grim, but I am gonna keep on fighting through the crappy days.  So what if my house is a wreck, or I have to take a nap to get enough energy to drive my kids to various events.  Yes my kids complain about my embarrassing mask I have to wear in public..but first and foremost I have today.  I am alive today.  The cancer cells are mostly suppressed and have not begun to grow! 

I have so many wonderful people that bless and enrich my life and "love me through" this!  God bless you all for your love and support!