Thursday, June 14, 2018

Bosulif Update: The New Wonder Drug!

I started taking Bosulif, a TKI medication, last December 2017. This is one of the medications that is used to treat Chronic Mylogenous Leukemia, which I have been battling since February 2011.

I had previously been on Sprycel since diagnosis, but the side effect, pleural effusion, became more than I or my lung could handle; hence the switch to Bosulif.

To further complicate matters, my PCR; the test used to measure the amount of disease in my body had climbed from .042. to .972, which doesn't seem like much, but in the world of a CML patient, it is "scary huge"!

Starting a new medication is always scary, as you are wading into uncharted waters; how will my body react, and will it work?  Bosulif was no different. In the beginning, I was MISERABLE!! I was so sick; constant extreme nausea; the kind of nausea that makes you not even want to swallow your own spit, for fear of vomiting. I always premedicated with Zofran, an anti-nausea medication, which helped, but did not completely control the nausea.

I began using CBD oil (no THC) 300 mg, and sucking on Preggie Pops, along with the Zofran; this seemed to help tremendously. That, coupled with the fact that my PCR dropped to .62, and I was beginning to be a happy camper, once again!

Fast forward seven months, and I am happy and proud to say, that my body is finally adjusting to Bosulif!!!

Hallelujah, Amen!!

I have only taken two Zofran, during the past two weeks; the CBD oil and the Preggie Pops seem to be all I need at this point, and I am SO grateful! Very little nausea, and no diarrhea! I was a bit fearful to stop the Zofran, as I believed that it counter-acted the diarrhea aspect of the Bosulif, due to the fact that it can cause constipation, but it seems that the Zofran has helped me to adjust to the Bosulif and has become an "as needed" medication, instead of a "must have."

I am still splitting my 400 mg, per day dose; into two 200 mg doses, twice a day; this is working for me.

I am SO grateful; I am seriously almost giddy! And to top all of that off, my latest PCR test came back at .06!!! Once again below the .1%, coveted number! Thank you, Bosulif!

I am one lucky girl, and so glad that I FINALLY made the switch! Being brave is harder than you think; it takes, courage, and sometimes a good kick in the pants! It is difficult to give up on a medication that has saved your life for six years, not knowing whether or not the new medication will do the same.

Some of us accept a change in medication more easily than others; I needed to be pushed off a cliff! Fortunately, there was a safety net, to catch me at the bottom.

Be Brave, Be Fierce and Be Grateful!

Blessings to all of you Warriors!

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmylogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml

Saturday, June 9, 2018

Without Clinical Trials:I Would Be Dead!

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much-needed awareness about the power of breakthrough research.

Early morning, February 9, 2011; the telephone rings, I answer. This is what I hear: "I am sorry to have to tell you this, but you have leukemia."

My first response is, "What?"

My second response is, "Now what?"

And so the journey begins.

My journey is not unique, it is not uncommon and I do not travel it alone. It has been a journey filled with twisting, winding roads, which have led me into the depths of despair, the valleys of normalcy, and the mountain tops of elation.

I have Chronic Mylogenous Leukemia; keyword  "chronic." Chronic meaning I will have a lifetime to understand and learn about this disease. Chronic meaning I will have a front row seat, to the ongoing research, in a cure for CML. Chronic meaning I will live to see the results of the many clinical trials, that are currently being conducted, with brave CML patients.

The first clinical trial for Chronic Mylogenous Leukemia, began in 1998, with a drug named Gleevec; through its success, Gleevec was FDA approved, for treatment of CML, in May 2001. This groundbreaking discovery has vastly changed the outcome of CML patients from a certain death to a bright future; one that often rivals the life expectancy of someone who does not have cancer.

Choosing to be a pioneer, in a clinical trial, is a daunting decision. There are so many unknowns and so many potential risks and dangers, yet the glimmer of hope often tips the scale. For many that enter clinical trials, the trial itself is their last chance; their last hope to beat the odds.

Knowing that they are facing imminent death, people courageously enter into clinical trials with much optimism; understanding that they are entering uncharted waters. They know that their outcome is not always favorable, but deem it necessary, and worth the risk. They know that the information gathered in these trials, is not only valuable, and their best chance at survival, but significant to research, which will help the lives of those who follow in their footsteps. I truly believe that these people are true warriors.

Not all clinical trials target patients who are in the end stages of their disease. Currently, there is an exciting new clinical trial, for people with chronic mylogenous leukemia. It is a trial monitoring whether or not a CML patient (who meets very specific criteria) can safely discontinue their CML treatment, and remain in remission. And, if their disease does become detectable once again during this trial,  can the leukemia can be put back into an undetectable state, once resuming treatment?
There are many people interested in the long-term outcome, to these trials.

I believe that patients' may have influenced this particular clinical trial because I believe that Patients Have Power! They have a voice, and they have the power to say, "I do not wish to remain in treatment, if my leukemia is undetectable, and the treatment is no longer necessary."

Because CML is chronic cancer, and because CML patients are now living normal life spans, many of us have had ample time, to research our disease. We are well versed, curious and determined to "find a cure." We want to return to our "old" normal; a normal without cancer and without side effects, from its' treatment. We want to live our best lives, without the financial burden of our life-saving medication.

Not everyone will be able to become treatment free, but I admire those, (who fit the criteria)who are willing to take the risk and enter a "Treatment Free Remission Trial," in order to give us all hope. The information gathered, will aid researchers in determining who will be able to someday discontinue treatment, and who will not; and the "why" it will be successful for some, and not for others. The goal is to treat CML patients, with the hopes of discontinuing their treatment, in the future.

Fortunately, there are clinical trials, and people willing to participate in them,  which may allow this dream, to become a reality.

I greatly admire the brave souls, who are willing to take calculated risks, in order to aid researchers, in their quest; to find cures for disease. Without these valiant pioneers, we would not be witnessing so many medical breakthroughs, and I would not be alive, today.

I believe that Patients Have Power, and as a patient advocate, I strongly believe that we should use our power, for the greater good. No one chooses, or expects that their own "good health" will change or decline, and we often take our own "good health" for granted; right up until the phone rings, and you hear those words, "I am sorry to have to tell you this, but you have leukemia."

I am grateful to for creating the opportunity to speak out on behalf of clinical trials, and believing that Patients, truly do, Have Power!

FaceBook: CML: A Place for Hope and Humor

#clinincaltrials #Patientshavepower #research #treatment #leukemia #lovemylife #cml

Wednesday, June 6, 2018

Even in Pain, You Can "Play"

Me; Making sure I don't get bit by a mosquito;
we didn't see any, but I saw people with bug
Sad but true, I am still dealing with a flare up of nerve pain, in my feet, and a precarious Achilles. At least the nerve pain running down my left leg has subsided; for this, I am grateful!

It is hard not to get angry when this happens; I hate hobbling around, and I hate being in pain.
Sometimes the best medicine for pain, is a change of scenery; it doesn't make it go away, but it does help to improve my mood! lol

Last night we went to the Shakepeare Festival, to see MacBeth. The play was performed in an outdoor amphitheater, and we had front and center seats! It was the first, in a series of plays, that we will see this summer.

I love theater, and I REALLY love this small, intimate venue. We are allowed to bring in our own food and drink, so I packed up a picnic basket, grabbed a blanket and some chairs, and headed to town.

It was a fabulous evening, and despite knowing very little about MacBeth, I thoroughly enjoyed the play. The acting was superb, as always, and the fact that I was able to follow the story line was a bonus!

Here's to a night out, a change in scenery, and an improved mood!

Sunday, June 3, 2018

Cipro; The "Gift" That Keeps on Giving

It is an absolutely beautiful day, today! The sun is shining and it is not too hot; the birds are singing; and all of the plant life has burst into bloom! While I already shared my beautiful iris plant, that is double blooming like crazy, I cannot help to think that it is not the only gift that keeps on giving.

It has been many years since  my body was permanently damaged by the antibiotic Cipro. (a commonly prescribed antibiotic for bladder,  sinus infections, and UTI's) I am grateful that the reoccurring pain, due to the damage caused by Cipro, is no longer constant, and that I have periods of time, that I actually forget that it even happened, but boy, oh boy, let me tell you, when it flares back up, I am reminded just how life altering a "simple round" of the antibiotic Cipro, can be.

I believe that this latest flare is directly linked to the night of dancing, a week ago. It was the third time that I had been dancing since my shoulder surgery, and since my pleural effusion has improved, due to a change in leukemia medications, and I am sure that I just over did it. My heart and soul,  just do not know when to say, when! lol

The nerve pain in the bottom of my feet began as soon as I stepped out of the car; after arriving home. I was a bit annoyed, yet hopeful that it would be gone by morning; of course, as my luck would have it,  that did not happen. The nerve pain has just continually gotten worse, and I am hobbling, with every step.

Two days ago, the nerve pain started traveling up the back of my left leg; It is so severe that it makes, sitting, standing or lying down miserable. Ibuprofen seems to bring some relief and today I am trying heat. UGH!

My reason for sharing this information is purely,  to warn you; warn you against taking the risk of ending up with side effects from an antibiotic (Cipro or Levaquin or any florquinolone)that may be permanent. I swear I would not wish this pain on anyone; it SUCKS!

I know that it is very hard to believe that an "antibiotic" can cause permanent nerve, tendon and muscle damage, to name a few,  and I know that most medical professionals just do not believe the severity of the side effects, or the number of people damaged by them, but what I can tell you, from my personal experience, and from speaking to others who actually realize where their unexplained pain has come from, is that it just is NOT worth the risk.

For those of us that have been damaged by this class of antibiotics, we know how life altering, that decision has been, and I know we all wish we had been "warned", or at least counseled, like the Black Box Warning states. (this rarely happens)

I know that people probably think I am a bit obsessive about this subject, but every single time I am physically reminded how my body has been destroyed, I want to save others from the same fate.

I believe in my heart of hearts, that a large number of people that have tendon tears and ruptures, and others that are diagnosed with Fibromyalgia, are actually suffering from Cipro or Levaquin side effects; sad, but true. I believe that the FDA recorded number of cases, is grossly under reported, as I believe that few actually correlate their pain, and/or tendon ruptures to an antibiotic that they are currently taking, or have taken in the past.

If you suffer from unexplained pain, or tendon ruptures, or any of the side effects listed below, delve into your medical history and see if you have taken Cipro or Levaquin. Best case scenario, is to avoid it, unless it is your LAST drug of choice!

Side effects include, and are not limited to: (remember, some of these may be permanent)

Swelling or inflammation of the tendons
Tendon rupture
Tingling or pricking sensation (“pins and needles”)
Numbness in arms or legs
Muscle pain
Peripheral neuropathy (nerve damage)
Suicidal thoughts
Abnormally rapid or irregular heartbeat
Ringing or buzzing in the ears
Vision problems
Skin rash
Sensitivity of skin to sunlight
Worsening of myasthenia gravis
Aortic aneurysm
Aortic dissection

On a side note; as I was looking for the side effects of these antibiotics, I was FLOORED to see  how  "hidden" the possible permanent damage is, on the internet. You really have to dig, or search; Black Box Warning. Truly unbelievable, and absolutely infuriating.

At this point, who is responsible? The pharmaceutical company? The prescribing physician? The pharmacist? Or the person who trusts, all of these people?

Related Links:

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Instagram: CMLMichele

Thursday, May 31, 2018

Why Do I Blog?

I still remember wondering, "What is a "blog"? I had never heard the term, and once I understood "what" it was, I did not understand "why" any one, in their right mind, would want to create one!

That is, until I was diagnosed with chronic mylogenous leukemia, in February, 2011. My "blog" was never intended to be anything other than an informational place for my friends and family, to check in on the status of my health, and to learn about my cancer.

In the beginning, I was just too sick to repeat the same information, over and over and over; I knew that those that cared about me were concerned, and just as scared as I was, and that they were calling to lend their support and to see how I was doing.

I loved that I had such a great support system, and so many people that loved me, but I just did not have the energy to personally speak with each and every one, which is precisely "why" I started my blog.

It was the easiest way for me to reach out to everyone, at the same time. It offered me a place to put all of the information that I was gathering, in layman terms, and to reassure everyone that I was going to be fine!

I decided that it was best to be open and honest, so that they could better understand the changes that were taking place in my life. I hoped that they would understand that I was no longer the "drop everything and head to Mexico on whim", kind of person, and that my new normal was going to be an adjustment; for all of us.

I wanted them to understand my limitations, my frustrations and my determination to establish an altered life plan, and to realize how much I appreciated their compassion, and thoughtfulness. I wanted them to understand what a chronic cancer was, and how it was treated; what types of testing were done on a regular basis, and what the results meant.

As time went on, I found that my blog was also therapeutic, to me; it gave me a place to "park" my fears, frustrations and disappointments, while also giving me a place to celebrate my triumphs and joys. It became a remarkable documentation of my CML journey.

What I did not anticipate was that it would become a source of information and comfort to others, who were also living with chronic mylogenous leukemia, and other chronic illnesses. It was never my intent to create a blog that strangers would read, and share. I never dreamed that I would be an inspiration to any one. I never dreamed that I would offer hope and compassion to people I had never met and I never dreamed that my blog would actually be considered "important".

It just happened! 

It was simply meant to be, and it is words of encouragement, like the words from my dear friend Ed Stagg, that keep me going;

"With few exceptions, my friends do not know this woman but I encourage you to read at least this one post of her's. Diagnosed with leukemia ten years ago, and having suffered nerve damage before that from a popular antibiotic, she suffers most days but remains an exceptional inspiration to herself, her family, friends and others. She is proof that a person can overcome if they are willing to fight and never give in. She has a lot of ups and downs, but every opportunity she can, she lives life to its fullest. A wife, mother, grandmother, dancer, dance instructor, former competitor, and one of the most gifted crafters north of the Rio Grande. She shares details for understanding, then shares how she overcomes. She has a large following and her blog has been voted one of the very best for education and inspiration by the association for her illness. She is Michele, and she is my friend."

Thank you, Ed, and thanks to each and every one of you that I have "met" along this crazy journey!

You all keep me, keepin' on!

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#whyiblog #cancer #cml #thrivingwithcancer #lovemylife #chronicillness

Sunday, May 27, 2018

When You Play, Sometimes You Pay!!

Last night was the third time I have been dancing since my shoulder surgery. In all fairness, I have missed many more nights of dancing, due to my chronic cancer, than I have from the surgery. The surgery aspect just means that I need to be really careful, and protect my shoulder, so it is not re-injured; which means limited dance partners and limited dances. Low on the priority list of considerations.

Higher on the list, is the annoying fact that I still have a small pleural effusion (fluid in my pleural sac, limiting full expansion of my lung) which limits my stamina greatly, and makes it difficult to dance an entire song. Add to that, the other side effects that I am still adjusting to from my new leaukemia drug, Bosulif, and it is a wonder that I can dance at all!

 The beginning of the night was rough; nausea, fatigue and all over achy-ness snuck in and threatened the night. I don't know whether it was the CBD oil (have not tried this brand)and the Preggie Pop, or just mind over matter, but I began to feel better after teaching the beginning lesson.

I began to rebound and feel the familiar happiness that comes with being on the dance floor.  A night of dancing, brings such joy to my heart and soul, that I always find it worth the effort to push through the rough spots, and hope that the endorphins kick in, allowing my feet to fly and my heart to sing.

Of course, all of that fun comes with a cost; today I am totally wiped out! The nerve pain in my feet is worse than it has been in years (thank you, Cipro) and the fatigue has prevented me from doing anything productive. I suppose that this is a small price to pay, for getting out there and enjoying my life.

Thank God for an understanding husband!

If you have never danced, it is never to late to learn; I highly recommend it!

FaceBook:   CML: A Place for Hope and Humor

Instagram:  cmlmichele

#chronicmylogenousleukemia #chronicillness #thrivingwithcancer #cml

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!

Wishing you a Happy Day!

Monday, April 23, 2018

Bosulif Update, PCR Results, Nausea and Magic Oil

Currently, Bosulif and I have a love hate relationship; I have been on 400 mg of Bosulif for two months now, and the nausea has continued, despite taking Zofran, prior to the Bosulif. A few weeks ago, I had a great idea, and asked my oncologist if he would approve; I began to split my 400 mg ( per day) dose, into two, 200 mg doses. This has tremendously cut down of the severity of the nausea, even though it has not eliminated it completely.

I have 100 mg tablets, so I am not actually cutting the pills in half. I am grateful for the decrease in the severity of the nausea, but hold out high hopes, that eventually I will adjust to this medication, and the nausea will completely subside.

On the upside, I had my BCR/ABL checked, after one month of being on the 400 mg dose, and I am happy to say that my PCR results were down from .972% to .34%; pretty good progress, if I do say so myself; at least the nausea, was not for naught!

A few things that I have been trying, to help with the nausea, is taking 4 mg of Zofran (an anti-nausea medication), approximately one hour prior to taking the Bosulif, and then taking the Buosulif with a meal, and a glass of milk; for me,  my first meal of the day, around 1 pm, and the second around 6 pm.

The nausea typically starts about an hour after I take the Bosulif; on "good" days, I eat a few crackers and carry on. On bad days, I swear a lot! lol Although, after much encouragement from another cancer warrior, I started using a magic oil, under my tongue; it tastes like CRAP, but seems to help.

Due to my unfamiliarity of said oil, and its' legal status, that is all I am going to say about it now. I also eat ginger, and peppermint Altoids, like they are going out of style and rub peppermint and ginger oil on my abdomen.

All of these things seem to help lessen the nausea, but I pray that eventually, I will become accustomed to Bosilif, and will no longer feel as though I am pregnant, with all day sickness.
I otherwise feel pretty darn good, and feel as though my pleural effusion is finally winding down; I have more energy, and less puffiness; all good things.

Have any great tips to share? Please leave in the comments below; together, we will all find our way.

Here's to riding the Bosulif train!

Thursday, March 29, 2018

Oxycodone Warning and Discovery

I am blessed to not have an addictive personality; I rarely drink, don't smoke and have never tried an illicit drug, in my life. My addictions come in forms of chocolate, and my family; I cannot seem to get enough of either!

So, imagine my surprise, when I realized that I was addicted to Oxycodone! As you may remember, I had rotator cuff surgery, back in Oct. 2017. Immediately following surgery, I was given 5 mg of Oxycodone, in the hospital, every six hours; it knocked me out, and allowed me to sleep during the first three, very painful days, following surgery.

When I was finally released from the hospital, oxygen in tow, I was given anti-nausea medication and oxycodone, for pain. My first day home I took one oxycodone during the day and one at bedtime, I also took one in the middle of the night; that is three pills, in 24 hours.

The second day, I only took tylenol during the day, and one oxycodone at night, when the pain was unbearable. This went on for several weeks; one to two, 5 mg of oxcycodone at night,  to help me sleep. I had no idea how painful shoulder surgery was, and trying to sleep at night was nearly impossible, so it did take the edge off.

Fast foward to the first week of Dec.; I began taking Bosulif, a new chronic mylogenous leukemia medication, which causes me, major nausea. After a few days, this nausea also caused a night of vomiting, so needless to say, I did not take an oxycodone, for pain, because my nausea was so severe. This continued throughout the next few days, with me being mostly miserable.

I started to wonder whether or not I had the flu, as I was having hot and cold flashes, body aches, and an overall feeling of being ill. It wasn't until my skin started "crawling" that I looked up withdrawals, from oxycodone, and low and behold, what I was suffering from was not the flu, but withdrawals from oxycodone!

Needless to say I was SHOCKED! I had only been on this drug for a short period of time, and only 5-10 mg, during a 24 hour period. I just couldn't believe it, and it made me realize how quickly and easily people can become addicted to this drug, without even realizing what is happening.

I was mortified and told my grandson that his Nana was a drug addict! I explained to him what had happened and how easily my body became addicted to this drug. I used it as a learning experience for him, and pray that I am never in a position to have to take it again.

The withdrawal symptoms fortunately only lasted for three days, but I can certainly see how someone with an addictive personality would prefer to take another dose, rather than  experience the actual withdrawal from the drug.

I am grateful that I realized what was going on, and that I do not have an addictive personality, and I have nothing but empathy for those who find themselves, innocently addicted to this drug. I now understand how Opioid Addiction has become an epidemic in this country.

Drugs, of any kind are a serious matter, and should only be used when needed, and as prescribed; not that that would have prevented my addicition, because if I had taken as prescribed, I would have taken much more oxycodone, than I did, and likely would have suffered more severe withdrawals.
Blessings and strength to those of you suffering with addicition; I empathize with you.

Thursday, March 22, 2018

Bosulif Difficulties

As you may know, I recently switched leukemia medications from Sprycel, to Bosulif. After six and a half, successful years on Sprycel, (with the exception of chronic and increasingly large pleural effusions), I hesitantly made the switch to Bosulif.

I started with 100 mg of Bosulif per day, pre-medicating with Zofran, and have slowly reached the ultimate goal of 400 mg of Bosulif, per day; I have yet to have a PCR test to see whether or not it is controlling my chronic mylogenous leukemia.

What I miss most about Sprycel, is the ease in which I was able to take it; I simply took my pill, right before I went to bed. No thoughts on whether or not I had pre-medicated with an anti-nausea medication, or if I had "eaten enough" food, to keep the nausea at bay.

Since I am most definitely NOT a morning person, and certainly not a big morning eater, I thought that it would be best to try and take the Bosulif with my largest meal, which is typically dinner. When I am home, that is not a difficult task, but I have often found myself, on the road, and eating at sporadic times, and if I have not taken the Zofran, an hour prior, then I am MISERABLE!

Apparently, I am not a structured eater, and I typically eat when I am hungry; which is usually a little bit here and there, throughout the day. I guess you could call me a grazer! lol This is not conducive to keeping nausea at bay, from the Bosulif. I cannot even imagine the difficulties of  fasting twice a day; I would NEVER get my medication down the hatch!

So thus far, I have found myself eating a much larger than I am used to dinner, taking the Bosulif and still feeling nauseated two hours later; I am then eating a bowl of cereal, a piece of toast or yogurt, which seem to help, and drinking ginger-ale. Add to that ginger, and peppermint Altoids; I also rub peppermint oil on my abdomen; talk about desperate! I am will to try anything.

So far, this has kept me from vomiting, but I hate going to bed feeling stuffed and miserable!

I am now rethinking the "when" I should take this life-saving medication, and am going to try to ingest it, earlier in the day. I just hate the thought of feeling miserable all day, and when I take it at night, at least I am able to sleep through most of the nausea.

Hopefully in time, this side effect will begin to lessen, and it won't be such an ordeal to get my daily dose, down the hatch. I am grateful that I have not had the diarrhea, that so many suffer, and wonder if it is because of the Zofran, which can cause constipation; maybe that side effect cancelled out the other!? Constipation vs Diarrhea; whatever the case, I am fortunate to only have one major pain in the gut, instead of two.

Today I shall try something new; pills earlier in the day; I will keep you posted and would love to hear what works for you!

Glad to be here, to enjoy another day!

Blessings to all of my CML warriors!

Thursday, March 8, 2018

Prescription and an X-Ray

I am pleased to announce that the prescription debacle has come to an end!

While Walgreen's and Optum Rx could not figure out how to fill my prescription for Odansetron/Zofran, an anti nausea medication, that I need to take prior to ingesting my new chronic mylogenous leukemia drug, Bosulif; St. Luke's Hospital Outpatient Pharmacy did!

My poor oncologist's nurse, Sara, has been such a trooper; faxing prescriptions here, there and everywhere! St. Luke's was a last ditch effort on my part, as I had high hopes of them knowing how to bill for this "insurance uncovered" medication, as I knew they often filled prescriptions for many outpatient, cancer patients. I put all my faith in them.

Off Sprycel 4 months
Yesterday they called with good news, bad news scenario; the bad news was that there was NO WAY insurance would cover this medication. The good news??? That they could fill the prescription for $16.32!!! This, in my book was a total WIN!!! The other pharmacies wanted between $160.00 - $200.00; what the heck? Isn't that just crazy? Needless to say, I went and promptly picked up my medication, with many thanks!

Goes to show you, that persistence DOES pay off!

Second on the agenda; a chest x-ray. As you all probably know, I recently switched my TKI medication from Sprycel, to Bosulif, following several years of significant pleural effusions.

Typical Effusion on Sprycel
I have now been off of Sprycel for four months and one week; long enough, one might think, for the effusion to be completely gone. Since I have been home, I noticed that I am still short of breath when going up and down stairs, and since I read, and freak myself out, that it is "Possible" for some people on Bosulif to have pleural effusions, especially after having chronic pleural effusions on Sprycel, my physician and I though it prudent to get a chest xray; just for "good measure."

This way, if nothing else, we have a baseline.

I am happy to report that while I still have "some" fluid in my left lung, it is greatly reduced from my previous x-rays; this is outstanding news and has me smiling, ear to ear!
See how quickly my mood can change??

Off to the grands tomorrow! I am SO excited!!

Be well, my CML warriors!

Tuesday, March 6, 2018

Disgusted CML Day!

Most days are good; I cruise through them with little thought of chronic mylogenous leukemia.
The past few months, this has not been the case. Starting with the complications from my rotator cuff surgery, due to chronic pleural effusions, and the switch to a new CML medication, Bosulif, to hopefully alleviate my pleural effusions.

I have found Bosulif to have few side effects thus far, with the exception of nausea and vomiting; this has been controlled by pre-medicating with Zofran/Ondansetron. I started this medication while in southern California, visiting family, and was able to fill the prescription of Zofran, with prior authorization, at Walgreen's, with no problem.

I am home now, in Boise, Idaho and it has become a problem. Three days and about six hours on the phone, worth of "problem",  headache, frustration and aggravation, along with fear. It seems that Walgreen's is unable to run the prescription through my insurance, the same way that they did in California; why? I do not know!

They then transferred it to the mail order pharmacy, where I get my VERY expensive leukemia medications from, and they, too cannot "mail" it, and bill it through my insurance.

I have now called the local pharmacy, in the hospital, in high hopes of them being able to bill my insurance, for this medication. I have four more pills, and have been cutting them in half, to hopefully "survive" the next few days.

What I have noticed, since cutting them in half, is that for the first time since starting Bosulif, I now have the infamous diarrhea, to go along with the nausea. Yay!

And another thing that I have noticed, is shortness of breath, going up our stairs; now this could be residual pleural effusion from my Sprycel days, which I pray will be the reason, or it "could" be from the Bosulif; my oncologist says, "No", but the package insert says "Possible".
So needless to say, I am pretty disgusted, and even a bit fearful; what happens if the Bosulif causes pleural effusion, too? UGH!

I guess every now and then, a good dose of reality, really does make you stop and think, that I really and truly, do still have cancer.

This coupled with a few recent CML deaths, and major complications remind me to get out there and enjoy my life!

We are headed to Arizona, to watch the four grands, while Mom and Dad go to Hawaii, on Friday; I plan to soak in, every single moment!

Thursday, March 1, 2018

Medication Change; From Sprycel to Bosulif

Missing the pre-teenager!!
For those of you that have followed my journey, for the past seven years, you already know that I have been on Sprycel, the entire time. My doses have changed, and my scheduled had been altered, all in order to determine the best possible control of my leukemia, with the least amount of side effects.

In the beginning, I had many side effects from Sprycel, that varied from bottle to bottle; I learned early on to monitor my side effects, and to record the lot number on the bottle. When I had a month that I felt particularly well, I would ask for the same Lot number, from the previous month. This allowed me to actually have a better quality of life, as time went on, than in the beginning.

I believe that over time, my body adjusted to the Sprycel, and after five years, my PCR finally remained below the  optimal, .0something threshold. Oddly enough, once I had reached this desired "goal" I began to have large, persistent pleural effusions, which I eventually, reluctantly agreed to have drained.

Upon having my first thoracentesis, I realized two things; one, that once the fluid was removed, I could breathe much better; and two, the actual procedure was not nearly as big a deal as I had anticipated. I decided then, that having a thoracentesis three to four times a year was preferable to changing leukemia meds, at this point.

I was pretty dead set against making a change in my medication because; A. It was working so well to control my leukemia, and B. Other than the pleural effusions, I felt pretty darn good!

The thought of "starting over" with the unknown was scary; it had taken me a long time to reach a desirable PCR result, and to feel good. I suppose that I had the mentality of "Leave well enough alone," or "Don't fix what is not broken."

The problem was, the pleural effusions became quite the nuisance! They began to return quicker and quicker, and what in the past I was able to resolve with a short medication interruption, now required a thoracentesis, and even those were getting closer and closer together.

The tipping point came when I had to have rotator cuff surgery; I had a thoracentesis performed a week prior to the surgery, removing 1.7 liters of fluid, in order to prepare for the surgery. The other shoe fell, when two days prior to the surgery I was told that I wouldn't be cleared for surgery, until I had ANOTHER thoracentesis.

I was like, "Seriously?" I just had this done last week! "Yes, seriously!" So, you can imagine my surprise when they removed ANOTHER 1.3 liters of fluid; apparently the fluid is rebuilding at a rapid rate, OR I really do have a trapped lung, which can result from chronic pleural effusions. UGH! Something to consider, further down the road.

On the morning of the surgery, they X-Rayed my lung, and there was still fluid; they proceeded with caution and I ended up in the hospital for three days, due to low oxygen saturation; I was also sent home on oxygen. This was a real eye opener.

I was only supposed to be off of Sprycel for a few days, but that quickly turned into three weeks. During that time, I seriously considered my options; I could continue with Sprycel and have a pleuradesis, to prevent the pleural effusions (a nasty surgery where they cause to lung to attach to the pleural sac) or I could try Bosulif, first.

It was a BIG decision, for me.

I was terrified of the side effects that people seem to have on Bosulif, particularly the massive diarrhea; you see, we were going to be traveling for the next two and a half months, by car; long road trips, with no bathrooms in sight! lol

Eventually, I convinced myself to give it a shot, while still at home; what did I have to lose? I could always go back to the familiar, if it didn't work, or I couldn't tolerate it. My oncologist recommended that I start with 100 mg a day, and slowly build up to 400 mg, per day, which seemed like the best choice, for a chicken like me! If you could have seen me take my first pill, you would have laughed! I could barely choke down the little sucker! I was terrified of what might happen!

When I realized that I wasn't going to have an allergic reaction, or heart attack, I settled in to a wait and see mode.

After an hour or two, I had some abdominal cramping, but no diarrhea! Phew! What a relief! I was nauseous and did develop a headache, but nothing too terrible. I continued onward, with 100mg, for one week; I did continue to pre-medicate for nausea, as that seems to be more my "MO" than the diarrhea.

By this time, I found myself cautiously, optimistic, and I began to take 200 mg per day; pre-medicating for nausea and with a BIG meal! Dinner. The increase didn't seem to affect me, any more than the starting dose. Whoo Hoo! Once again, cautiously optimistic!

By this time, I had also started physical therapy for my arm, and felt generally crappy, so any side effects from Bosulif were likely masked. After my first full week of 200 mg of Bosulif, I began to notice swelling in my right breast. Doesn't it just figure, nothing is ever easy!?

The swelling worsened to the point of pain; I attributed it to the Bosulif and the immobility of my right arm; both the surgeon, and my oncologist said, "Nah, couldn't be that!" My internal medicine gal ordered a diagnostic mammogram, and the physical therapist and I agreed, that it was probably the combo of the drug, and the immobility.

It was a Stranger Things kind of Christmas!
At this point, we were in Arizona, at my son's for early Christmas; I decided to stop taking the Bosulif to see if the swelling would go down; ten days later, it was gone; so I started back on 100 mg, of Bosulif. By this time, we were at my daughter's. I took my pill and shortly felt miserable; the nausea became so great, that it eventually led to vomiting, which isn't a good thing, as I typically pass out, when I vomit. I was wicked sick, the entire night, and totally depressed!

Since it was six days before Christmas, and my eating schedule was all over the place, I decided to cease taking this drug; one more time. Bosulif and I were off to a rough start; I needed to get through the holiday, and then I was going to give it one more valiant try; I had high hopes of it being my next life saving medication, and wasn't ready to give up on it yet!

The day after Christmas, I pre-medicated for nausea, ate a HUGE dinner and started 100 mg of Bosulif, one more time; there was nausea, but no vomiting, and my body quickly seemed to adjust to the Bosulif, on its' third go. After only six days, I increased to 200 mg per day.

By this time, I was concerned about my PCR, as I had had many breaks from Boslulif, as well as a long break from Sprycel, before I switched to Bosulif. I was seeing my oncologist in January, so I figured that I might as well,  just stay on the 200 mg, and see where I was at, and after the PCR was drawn.

My previous PCR was .042: I was prepared for an increase, and hoped it would not be too high!
My "guess" was .9something, and I was correct; .962. While I had hoped it would not be that high, I had expected that it would, and I was grateful it was not a full 1%. Needless to say, I started taking 300 mg of Bosulif, as soon as I received the results. There has been no more swelling, since my arm has been out of the sling, and moving, (guess the physical therapists and I were right on that one!) and with pre-medication with Zofran, and eating a larger than I like dinner, I am tolerating the Bosulif well.

I feel great during the day, and only slightly nauseous at night. Along with a large meal and Zofran, I am eating ginger slices and peppermint Altoids, and rubbing peppermint oil on my stomach, to help combat the nausea!  I will do whatever it takes and I pray that I will adjust to this new drug quickly.

Within ten days of the 300mg dose, I upped it to the desired 400 mg; thus far, I seem to be tolerating it quite well, and hope to eventually be able to cut-out the Zofran. I do not know when I will be brave enough to give that a try, but maybe if there ever is a week without nausea, after taking the Bosulif, I will give it a shot.

I pray that my labs will all be great, and that my pleural effusion will evetually resolve on its' own. I have to tell you, that even though I feel like I have tons more energy, and have been able to do things I would not have been able to do with a large effusion; there is still one there. My oncologist says that it can take quite some time to completely disappear; but I have to admit that I am a surprised, and disappointed, that it is not gone. I have been off of Sprycel for four months, which seems like ample time for it to resolve, but I imagine that I will just have to be patient, for a little longer.

The thought of having a "trapped"lung, still niggles in the back of my brain, but thus far, I have been able to squash those thoughts, back into a small little corner, of my brain. I will keep on keeping on, and when this arm is fully recovered, I hope to get back to dancing; that will be the true test!

So, all in all, my switch to Bosulif, despite the rocky start, has been a good one. Now the final determining factor will be revealed with my next PCR result. While I do not expect miracles, I do expect and hope for a decrease in the BCR/ABL, as opposed to an increase.

Until then, I will keep on, keeping on, and continue to Dance and Travel My Way Through Leukemia!

For those of you that know me; this was a BIG DEAL!

Bricks for the Brave!!