Thursday, February 9, 2017

Six Year Cancer-versary!

Today marks six years since I heard the words, "Michele, I do not know how to tell you this; but you have leukemia." Needless to say, I was shocked beyond belief and scared, almost to death!

I admit that it has been a roller coaster of a ride, with many ups and downs, but I am happy to report, that I am still here; enjoying life, family and friends.

Looking back on my journey I realize how far I have come, and am so grateful for the medical advances that have kept me alive.

I find it ironic that I am in Palm Springs, as I now live in Boise, Idaho, on the day, in the same town that I was diagnosed. It is bittersweet. Joe and I are staying at the same resort that we came to, on Valentine's Day, when I was released from the hospital.

As far as, how I am "doing" now, I can tell you that last year was my very best year since diagnosis. All of my PCR's were below the magical .0 number and my side effects were minimal. I still deal with the typical nerve and bone pain, fatigue, headaches and nausea, but they were more of a nuisance this year, than debilitating.

I also still deal with pleural effusion from the Sprycel, but have found that a thorocentesis does wonders!

So how did I spend my day? Having a head CT. As far as I know, I have no rocks, or holes in my head! It was precautionary due to the headaches I have; likely a side effect from my medication.
Living life with cancer is definitely an inconvenience; we spend much of our "vacation" time traveling to see my oncologist, having blood drawn and scans taken, but I just accept that this is part of the deal, in keeping me alive.

There is a small amount of stress, every three months, waiting for test results, but that is a small price to pay for the privilege of being around to enjoy my life.

Tonight I will spend with my youngest son and tomorrow morning we will travel to see my middle son, and his family. The joy that my grandchildren bring to my heart is like no other and I feel blessed to still be alive!

This year, with any luck, will be filled with travel to places I have never been, so if you are just beginning this journey of living with CML, try not to despair. Take each day, one day at a time and keep putting one foot in front of the other.

Reach out to others for support and be kind to yourself; accept your new normal and learn to roll with the punches.

And remember, that someday, there may actually be a cure for chronic mylogenous leukemia! I intend to be here when it happens!

Monday, October 24, 2016

Fighting for Fighter Shirts!

It was another great year for the Boise, Idaho Light the Night walk for the Leukemia & Lymphoma Society. Along with my friends and family, Dancing My Way Through Leukemia raised $2250, and our little city of Boise is close to $275,000 to donate to blood cancers research and support!!

The night was a huge success and I could not be prouder of the Boise Chapter, of the LLS. They work long and hard for those of us fighting blood cancers, and go above and beyond the call of duty.
Several years ago, I wrote a post about feeling uncomfortable and unsure about the representation of the shirts that we are all given to commemorate the Light the Night Walk. There were three choices, In Memory, Supporter or Survivor; I felt that there should be another category; Fighter.

I found in wearing a "Survivor" shirt, that I was approached by many other survivors; they wanted to know when I finished treatment, and what type of blood cancer I had. I became weary having to explain that I had a chronic type of leukemia, and that I would be undergoing treatment for the rest of my life.

So, I got to thinking; I figured that I was not the only person still fighting the good fight. There were many patients that were still undergoing chemotherapy, radiation and in the throes of bone marrow transplants. Yes, we are all technically "surviving", however, we are still fighting, every single moment, of every single day.

I felt that those of us that have yet to ring the "Cancer Free" bell, would be better served with a shirt that said "Fighter" on the back; in hopes to some day be cancer free and graduate to the "Survivor" status.

I know that many people undergoing treatment may consider themselves "survivors" and I do feel as though I AM a survivor, per se, but in this arena, I feel that the differentiation between "Fighter" and "Survivor" is valid and important.

Differentiating between "Survivors" and "Fighters" is a visual aid that shows all of the people participating in the Light the Night walk, clearly how many people are currently in treatment, and how many survivors, their efforts have saved.

It allows those of us, who are undergoing treatment, to commiserate with one other, and clearly shows who we can congratulate on their success in beating blood cancer. It stops those of us, still in treatment,  from having to explain that we don't have an "end"date...yet, and gives us a boost in the belief department, that we are warriors.

Fortunately for me, our Boise LLS office stepped up to the plate and printed Survivor/Fighter shirts; which is not exactly what I want, although if they had Survivor/Fighter shirts AND shirts with just Survivor, I think that would be AWESOME!!

That was last year; fast forward one year.....

I was told that the "head office" of the LLS gave the Boise office a little bit of grief over adding "Fighter" to our shirts. But in grand Boise fashion, our office stood up for the Fighters of Blood Cancer and did not back down; they had Survivor/Fighter shirts printed. The National LLS office feels as though  all of the shirts should be the same, and that there should be unity across the board.
SO, the Boise Chapter of the LLS is standing by me, and all of the blood cancer patients, still in treatment, and we are going to push to make "Fighter" shirts available for ALL chapters, in all cities and states, that hold a Light the Night Walk!

How awesome is that??

We are doing our part, and I would love the help from all of you. If there is enough interest and enough comments, I will put together a petition that we can submit to the Leukemia & Lymphoma Society to push for next years Light the Night Walk, shirts; Fighter AND Survivor!

Thursday, October 13, 2016

Light the Night 2016; My Gratitude

Light the Night 2016 was a HUGE success! The Leukemia & Lymphoma Society in Boise is AMAZING! I believe that when all is said and done, the Boise chapter will have raised over $300,000 for Leukemia and Lymphoma research and support.

Thank you to all of my friends and family, that donated to this worthy cause; this year, we raised $2250, a personal record! Pestering and bugging friends and family for donations is not high on my "fun things" to do list, so I appreciate you all for putting up with, and supporting me during the month of September, which happens to be the month before the Light the Night Walk and Blood Cancer Awareness month.

Blood Cancers certainly do not receive the attention that Breast Cancer receives, but with your continued support and encouragement we are getting there!

Approximately every 3 minutes one person in the United States (US) is diagnosed with a blood cancer.

Approximately every 9 minutes, someone in the US dies from a blood cancer. This statistic represents approximately 160 people each day or more than six people every hour.

With help from people like you, research is getting closer and closer to a cure for blood cancers.
I have lived with CML (chronic mylogenous leukemia), for 5 1/2 years, and I know far more about blood cancers than I would have ever dreamt. CML appears to be one of those "fluky" cancers that just "happens".

Some people consider it a "good" cancer, personally, I do not consider any cancer "good", but I am grateful that research and treatment has gifted me with 5 1/2 years of life, after diagnosis.
Knowing that I will have cancer for the rest of my life, or until a cure is found, can be daunting. I treat my cancer every day and tests are run every three months to monitor disease progression or stability. Over the years, I have accepted this new way of life.

Whether or not I will ever fully adjust to the changes in my bod,y caused by my treatment,  I don't know; but I am trying!

I think the most difficult aspect of living with a chronic cancer, are the side effects that occur from treatment. They change without warning and often correlate directly to specific lot numbers of the drug that those of us, with CML, ingest.

CML fighters never know what is in store from day to day. We deal with musculoskeletal, bone, joint and nerve pain, major fatigue, pleural effusion, flu-like symptoms, headaches, blurred vision and the list goes on and on, on a daily basis. It is sort of like a grab bag; you never know what you are going to get.

But this is the price we pay; we pay this price daily in hopes of a cure. A cure that will allow us to pick up where we left off, prior to being diagnosed with cancer. Of course we all know that there will likely be consequences to many years of taking a toxic drug, but it is a price worth paying.

So, from the bottom of my heart, thank you for supporting me and the LLS, in our Light the Night Walk; with every single penny, we are one step closer to a cure!

Bricks for the Brave!!