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Monday, May 21, 2018

"Have You Ever Seen?"

Have you ever seen someone park in a handicap parking spot,  get out of the car, and walk to wherever it is that they may be going? Without a wheelchair, or someone physically “helping” them?

Have you ever seen a person board a plane, with the group reserved for “people with medical conditions” not in a wheelchair, or otherwise visually impaired?

Have you ever seen a person “cut” in line, in front of you, for no apparent reason?


Well, if you answered “Yes”, to any of these questions; it is possible that you may have seen me; and you can thank your lucky stars, that you are fortunate enough, to not need to utilize these luxuries. Remember, that someday, that may change.

I never dreamed that I would fall prey to a compromised body; I ALWAYS took the stairs, I ALWAYS parked way out in the boonies, and I NEVER minded waiting in line. I have met some fascinating people while waiting in line, and I miss the added exercise, that I used to build into my every day.

I rarely park in a handicap spot, even now, as I feel there is always someone worse off than me, but sometimes, when I am feeling extra fatigued, or having a hard time breathing, or the nerves on the bottom of my feet are screaming, I assess my situation, and give in to the “luxury” of taking fewer steps, to accomplish my task.

After standing in many lines at airports, and getting woozy, to the point of near fainting, I have finally resolved myself to boarding early, with the other “medically challenged” people;  usually in wheelchairs. People often stare, and I can only imagine what they are thinking, but while I may be one of the first people on the plane, I am always the last one off!

Flying kicks my butt and it takes my legs, almost all of the way to baggage claim to “wake up!” I call them jelly legs, and I am as slow as a snail getting up the gangplank; those people that are quickly disembarking, might have a different opinion of me, if they saw me getting “off” the plane.

(This is what my legs look like from too much standing or walking)

On long journeys, I have even been known to request wheelchair assistance.  Do you have any idea, how difficult, and disappointing, this is? Yet, I have to remind myself that I have a limited amount of stamina and energy, and I need to choose wisely, how I use it.

And if it weren’t for handicap lines at attractions, museums, and monuments, I would never be able to continue to dream; to dream of going to new lands, to dream of experiencing new things, and to dream of  fulfilling my wanderlust spirit.

And if you lose the ability to dream, what would be the point of living?

So  the next time you wonder why a person “seems” to be getting “special attention,” know that it comes with a price; a price that may not be apparent to the naked eye. Know that many people “look fine” on the outside; but without X-Ray vision, you have no idea what is going on, on the inside. Know that it is not easy to ask for help, because asking for help tends to make us feel weak. And know that your stares and snickers do nothing more, than to make an already struggling person, feel even worse on the inside, than they already do.

Try not to judge, when you do not have all of the facts, and try and give that person a reassuring smile; it may just make their day!

Wouldn’t you rather be the type of person that brings joy to others, than the type of person that only feels good, when looking down upon another?

Next time you see a person receiving “special privileges,”instead of judging them, have compassion; you never know when you make be walking in their shoes.


Change Can Be Scary!!



It wasn’t all that long ago, that I reached a crossroad.

My journey with chronic mylogenous leukemia began on February 9th, 2011. Since that time, the road has been full of twists and turns; and ups and downs. It is a road that has led to many adventures, and many open doors.
Some of these doors I willingly walked through, others, not so much! You see, when you live with a chronic cancer, you have a whole lot of time to become familiar with the disease! You have a whole lot of time to read about it, talk about it and maneuver your way through it.

Since diagnosis, I had only been on one of the available medications for CML; it was the medication that I carefully researched and deemed the “best fit for me”; and it was, for nearly six years.

As with all medications, Sprycel came with risks; I felt like the benefits outweighed the risks, until they did not. I had bouts of pleural effusions throughout my time on Sprycel, and for years they were resolved with a short hiatus from the drug. I the end, the effusions became larger and required a thoracentesis, to drain them.

My Wishing Well!
As the need for the procedures increased, my oncologist and I began discussing a change in medication. It was a change that I was terrified to make! Sprycel had been my life saving medication for nearly six years, and with the exception of the pleural effusions, I finally felt pretty darn good, on the drug. I was familiar with Sprycel and it had been my constant companion for so long, that I was reluctant to give up on it.

As time went on, it became more and more apparent that my run with Sprycel was coming to an end; I had to put on my big girl panties and take a leap of faith.

In October, I had rotator cuff surgery, not a huge deal for most, but due to the pleural effusion, in my left lung, I was in the hospital for four days, and sent home on oxygen, for six weeks. This was enough of an eye opener, to agree to try something new.

My oncologist and I decided to give bosulif a go, despite the horror diarrhea and nausea stories that I had heard. We agreed that premedicating with Zofran, and starting on 100mg per day, with weekly increases would be the way to go; this began in December of 2017. By March, 2018 I finally reached the desired 400mg per day.

When I started on Bosulif, my pcr had risen from .042 to .972, that was enough to motivate me, to getting back to kicking cancer’s bum, back down below the optimal .1% mark.

I won’t lie and say that this has been an easy transition; it has not. I fortunately do not suffer from diarrhea, but the nausea kicks my but! I felt “alright” on 200mg, so with my oncologist’s permission I began to split my 400mg per day dose, into two 200mg doses. I premedicate both times with 4 mg of Zofran, and eat a meal. I am also using CBD oil, with no thc, and preggie pops. (We have one other trick up our sleeve, if this doesn’t work) I have great faith that eventually, I will adjust to my new, life saving medication.

The best news of all??? I just got the results of my latest pcr test……..drum roll please! It is .06!!!
I read the results last night at midnight, and I literally cried with joy. I had had high hopes; hopes that the struggle, with this new drug would be worth it, and it IS!

I may be nauseous, and I may get discouraged and weary, but I am alive!  And now I have proof, that these struggles are worth the burden. I am glad that I took a leap of faith and embraced the change, even though it was not easy, and it took me a long time to do so.

Living with cancer, or other illnesses, is challenging, often discouraging, yet can also be rewarding. Change is scary, but often necessary, and for the best. Hopefully the next time that I am faced with change, I will embrace it sooner, and more willingly; and remember, that change keeps life interesting!


Monday, May 7, 2018

Blooming: Despite Leukemia

Yesterday, I was taking some photos of the flowers, in front of the house. What kept going through my mind was how resilient they are, and how they bloomed where they were planted.

It didn't matter that some of the bulbs were under rocks, they still managed to find their way, into the light. They still managed to grow and bloom. They are strong and resilient; just like those of us living with a chronic cancer, or chronic disease.

They fight through adversity and difficult situations, and strive to combat the wind, the rain and the hail; they stand tall and bring joy, without even knowing how special they are.

Many people live with adversity, yet continue to bloom where they are planted. I know that living with a chronic cancer has helped me to bloom in ways that I never could have imagined.

For instance, this blog....Never, ever, in a million years would I have ever thought that I would speak my mind, from my heart, to any one that was interested in reading; never would I have dreamed of speaking in front of a crowd about my disease, and what it was like living with a chronic cancer, never did I think that my experiences would reach out and help others, who found themselves, in my same boat, and never did I think that I would continue to bloom, after that devastating day, more than seven years ago, when I first heard the words, "You have cancer."

It is not always easy, and it can be wearisome at times, to manage and live with a chronic condition, but I plan to continue to bloom where I have been planted, and to play the hand that I have been dealt; with a smile on my face, a song in my soul and the belief in my heart that I am exactly where I am supposed to be!

                              10 Things That May Help You Bloom!

1. Volunteer; your time, your talent or just a listening ear.
2. Learn a new skill or hobby; for me, it was crocheting!
3. Turn on some music and dance!
4. Read a book.
5. Interact with a child; they see life differently.
6. Snuggle a baby!
7. Go for a walk.
8. Smile at a stranger.
9. Go someplace you have never been.
10. Count your blessings.

Do you have something special that helps you to bloom?

Saturday, May 5, 2018

Shhhh...Cancer is Sleeping

Last evening, was so beautiful; so still. Living in the mountains, there is almost always movement; a soft breeze, a bird's song, or a heard of elk wandering through our yard.

But last night was calm; so calm that I was able to capture the stillness, by photographing our perpetually spinning  yard art; at a complete halt. They were just, so still.

Still,  is how I imagine my chronic mylogenous leukemia. Still, is how I pray it will stay.
Seven plus years ago, when I was first diagnosed with CML, there were hundreds of thousands of cancer cells, running rampant through my bloodstream; today, because of science and research, those cancer cells have been reduced significantly, and prayerfully will remain suppressed, or still, in my body.

Many do not understand what living with a chronic cancer really means, as people often say, "Oh! I thought that you were cured! You STILL have leukemia?" Many assume that because I am still around, that I have been cured, that I have rung the bell and that my treatment is over, and I have gotten on with my life; cancer free.

With chronic mylogenous leukemia, that is not the case; the fact of the matter is, that nearly all CML patients will be on treatment, the rest of their lives. This treatment means that we will likely be around for quite some time, but it also means that we must learn to live with the side effects of our very expensive medication, and the unknown and unpredictable behavior of a blood cancer.

Our blood is tested every three months; we wait on pins and needles for the results. We pray that our cancer will remain still.

And we go out and live our lives to the best of our ability, and thank God every day for the opportunity to do so.

Be grateful for the still moments; they are precious in their simplicity.





Thursday, May 3, 2018

Do You Wear a Mask?

HealtheVoices 2018 invited me to attend their conference, as a patient advocate. I had no idea what I was getting into, but I knew that I must attend, in order to find out. The event was held in Chicago, and was attended by approximately 120 advocates, representing a plethora of health conditions.

You name it, it was represented!

It was a weekend full of sharing and caring; sharing our stories, our tips on how we get along and how we are empowered; by each other.

What I found, was that I was not alone on this journey;  living with a chronic condition, with a passion to help others.Of course, if I had thought about it, I would have realized that I was not unique; that the world is full of people, compelled to help others.

How awe-inspiring to be surrounded by so many of my peers.

One of the most apparent things that I observed, was that each and everyone of us possess the unique ability to wear a "mask". A mask that says, "I am okay, I am fine, I am great!" We wear this mask on the outside, to disguise how we feel on the inside; some may consider this, a mask of deception; but for me, it is a mask of survival.

You see, this mask is not just for everyone else, it is for me, too! Wearing my mask gives me the courage to keep going, it gives me the strength to put one foot in front of the other, every single day. It is a mask that says, "You are still you; you are NOT your cancer!"

Most days, this task is relatively simple, but trust me when I say, that this is not always the case. Some days, I just want to take the mask off; sit down and cry.

The very cool thing about HealtheVoices 2018, was that each and every one of us was able to take our masks off; for the entire weekend! We were with our "tribe" and we could be who we are, and those around us understood, and accepted us; struggles and all. It was amazing, it was inspiring and it was so necessary for all of us that advocate to others; in order to keep going.

It was a weekend of recharging our batteries, and I thank Jansen for this amazing opportunity!

                                     Why Do People Wear Masks?

1. To Hide Their Pain
2. To Avoid Disappointing Others
3. To Avoid Explanations
4. To Give Them Strength to Face Another Day
5. To Pretend They are Still Who They Were; Before Their Disease

Do you wear a mask?

What does your mask hide?

Follow me on Instagram @CMLMichele

Wednesday, May 2, 2018

Birthday's are a Blessing: Especially While Living with a Chronic Cancer!

Today is my birthday; I am 59 years old!

While I may marvel at how quickly time has passed, I will not lament its' passing. Living with a chronic cancer has taught me that every moment, of every day, is a gift; a gift that I cherish. And instead of dreading, or cringing, at the impressively growing number of years which I have acquired, I will celebrate them; with great joy!

For me, the first thing that came to my mind when I was told that I had leukemia, was, "How much time do I have?" The second thought that came to my mind was, "I am not done, I am not ready; I cannot die!"

I was ready, willing and able to do whatever it was to stay alive! I wanted nothing more,  than to have more "time". I wanted to enjoy my grandchildren, and witness my grown children become "old"; like me! I wanted to travel the world with my husband, and soak up all things that life has to offer; both great and small.

You see, when faced with the possibility of an expiration date, that is more tangible than the unknown date,( because we are all going to die), you get the chance to bring that thought, to the forefront of your mind.

It is a reminder of the inevitable, a stark reminder that we all have expiration dates; being told "You have cancer" just puts that expiration date in BOLD. It gives those of us, who have heard those exact same words, a little different view on life.

Some may be bitter, others grateful, and others frozen in time.  It is not always easy, but it is always worth it!

Having a chronic cancer, (one that requires daily treatment) has taught me many things, it has allowed me many opportunities, and for that I am grateful. Is it something that I would have chosen?

No, but I embrace the challenge and will continue to celebrate my growing number of years, hopefully, for many years to come!

Happy Birthday to ME!!!

Tuesday, May 1, 2018

Do You Have A Leukemia Inspired Tattoo?

Last year, Healthline voted my blog as the "Best Leukemia Blog of 2017" what an honor! Now, they are honoring those of you with Leukemia inspired tattoos!

I know that many of you have a great story behind your own, personal tattoo, and if you would like to share it with others, as an inspiration, you might  want to consider submitting your story to Healthline, for a chance to share your story, in their newsletter and with their community.

I would also like to share your stories on my blog, my instagram (CMLMichele) and my new facebook group: CML (Chronic Mylogenous Leukemia); A Place for Hope and Humor!

Soooo.....if you are inspired to inspire, you can submit your story here: Leukemia Inspired Tattoo  and then shoot it over to me, too! CMLMichele59@gmail.com

Wishing you a Happy Day!

Bricks for the Brave!!