Followers

Wednesday, December 31, 2014

Good Bye My Dear Friend, Karen; Another One Gone Too Soon

For the better part of my life, my “friends” were people that I met within the vicinity of where I lived. They were people that I met through common interests; people that I saw at the grocery store, the mailbox, the park or even at the doctor’s office. Today, much of that has changed; because of the internet, I have made friends with common interests, all around the world.

As luck would have it, some of my dearest friends have been become so, by sharing a very rare cancer; chronic myelogenous leukemia. For those of us that have found each other in various groups, this blood cancer doesn't seem all that rare, because all of us have it. Truth be told, there are only approximately 75,000 people in the United States, living with CML; when you compare that to the approximate population in the US of 313.9 million people, we really are a drop in the bucket.

This being said, it is not uncommon for those of us in CML “groups” to experience the death of a friend. The past few months have been particularly brutal in that department; we all have lost quite a few blood buddies. Right now, my heartbreak is from the loss of Karen Hurst Knoxx.  I “met” Karen several years ago,and was immediately drawn to her complete and utter sweetness. This coupled with shared interests brought us closer together as the days passed. I will now forever cherish the recipe card for Jambalaya, that she recently sent to me. I cannot believe that she is gone....

Unfortunately, Karen's CML journey has not been an easy one, and recently rapidly progressed into blast crisis; unfortunately, her optimism, valiant fight and tenacity were no match for CML. She earned her wings quickly and I pray that she flies free.......

Where does this leave us? Her fighting sisters?


It leaves us vulnerable, sad and a bit lost.

It leaves us with an ache in our hearts', a hole in our soul;and that is alright; our hearts should ache for this terrible loss. It is alright to feel sad, it is alright to be angry that Karen's rocky road has led her to our Lord.  It is OK to feel these things, for this is normal; allow the tears to fall, allow yourself to feel sad, but don’t forget to also include laughter to your tears, because Karen would not want us to only be sad. She would want us to remember our shared laughter, hopes and dreams, and she would want us to continue to fight. She would also want us to live our best lives and to spend time with each other, our friends and our families.

And while we suffer for our loss, we must remember Karen's family, for as much as our hearts ache; their loss is immeasurable.  I cannot imagine their pain and I wish that there was some way, to ease their sadness; hopefully knowing how many lives she touched and how many people loved her, will help to ease their pain.

Karen’s dying leaves those of us living with CML, lost, confused and devastated. It leaves another hole in our hearts; another loss and another taken too soon, from this disease. We all have many questions, fears and concerns; but for now, those can wait. Right now all we can do is hold Karen and her family close in our hearts and remember the compassion and support that Karen always gave to us.

This it is a personal story that allows me a snippet of a glimpse, of how I believe that Karen may have felt in her last days.

A decade-ish ago, I had surgery to remove ovarian tumors; I was forewarned that the recovery was going to be brutal, and it was. I developed an infection several days post op and was near death; the hospital staff even had a student nurse in my room around the clock, monitoring my every breath and encouraging me to fight. What I remember from this time was being so sick, that all I wanted was to be left in my own little world; I did not wish to return to the real world.

The world that I had fallen into was a world that engulfed me in a way that sheltered me from my pain; I remember feeling completely at peace and utterly calm, and wished only to exist in that world. I swear that it was either angels or the Heavenly Father Himself, which wrapped their arms around me, and held me tight. I felt no fear and had lost that innate sense of fighting for survival; I was at peace, and was comfortable with dying. I did not have any regrets or any unfulfilled wishes; I was calm, accepting and very much, I believe, this is how Karen may have felt in the end; simply at peace.

I know that this may be difficult to comprehend, as sometimes it is hard for me to even look back and remember, but I truly believe that those of us that will knowingly face our own deaths’ will have nothing to fear. We will be able to face death with the faith, courage, strength and grace that our dear friend is currently, and graciously allowing us to witness.

Karen was a warrior that allowed us to share her journey; the good, the bad and the ugly and I am honored to have been a witness to this incredible, beautiful woman’s life.

Thank you Karen for the laughs, the love and the strength which you have shared; I shall carry your grace and faith with me, all of my days; May God Bless you, and hold you close during your final journey.




You rocked it, sister! I am proud to be your friend!

Thursday, November 27, 2014

Thanksgiving 2014; Be Thankful and Mindful

There is no doubt that life is often full of adversity, turmoil, sadness and stress but despite the struggles, I pray that each and every one of you finds something to be thankful for. For those of you with family and friends; take the time to embrace them.

For those of you that have endured a loss, I pray that you find some joy in your memories. I know that the holiday season will be rough, so do the best that you can and be gentle with yourself. For those of us that are in the lives of others that are suffering through the holidays; be kind. Allow them their “moments” and share in their laughter, and their tears.

I have so much to be grateful for that my cup run’eth over; I have an incredible husband, three beautiful children, a wonderful daughter in law and five amazing grandchildren. In addition to my immediate family, I am blessed to still have my dear mother to cherish, my sister and her family, and my brother and his family, a multitude of very dear friends and extended family.

I have friends that I have known most of my life, friends I have met through dancing and my dear CML family; for all of you, I am grateful. I wish you a day full of laughter, thanksgiving and good health!

Be thankful for what you have and mindful of others less fortunate.


Happy Thanksgiving to all!

Saturday, November 22, 2014

When Someone Close to You Dies

This has been a tough year; one filled with loss. I have endured the loss of my father, CML sisters and brothers, a neighbor, and the loss of my dear, childhood friend. While each and every one of these losses has left a hole in my heart, the death of my childhood friend is intangible. It is a loss that I cannot wrap my mind around, so please excuse the likeliness of a post, which bounces all over the board.

I am not certain why I feel compelled to share this raw emotion with the world, other than to shed light on the importance of relationships, and the harsh reality that life always ends in death; always.  I believe that the ultimate decision is in God’s hands, but that doesn't mean I like it, or understand it.

I am fortunate to have a handful of true friends, you know the kind; the ones that you do not speak to everyday, but are always there in your heart; time and distance meaning nothing, as they are a part of your soul, and that is that. I am grateful for each and every one of you.

My childhood friend was all of that and more; he was the one person that has been in my life, for as long as I can remember. We were nine months apart in age, he being the “oldest”, a fact that he reminded me of constantly, until we hit the age of forty! Lol From that point on, I reminded him that he was the oldest! Lol

As life would have it, we shared ours’; our parents were best friends. We shared birthdays and holidays, school days and skipped school days, we shared our inner most secrets, fears and desires. He and I were together when my seven year old sister tragically died in a car accident; we didn't only share happy times, we shared tragic ones, too. Oddly enough it wasn't always what we said to each other, it was often simply the presence of each other, which mattered.

Losing him is like closing a major book in my life; not a chapter, but a book.  It is the book on the shelf that my entire life has been built upon. It is the book, that no matter which chapter I chose to visit, I could share it with him because he has always been there; always. He helped me write that book and he was the only other person on this planet that knew what was written on those pages; we shared and built our lives, side by side.  He was the spine of that book and I never imagined that he would be taken so soon. He was barely 56 years old and I am having a difficult time accepting the fact that even though I will always have our memories, I will no longer have the option of opening my book and revisiting my life, with the one person in the world that was there while it was developing.

Of course, I am fortunate enough to still have my mother, brother, sister and friends, but having a childhood friend without boundaries is a little different, it is that understanding that is gone and will so be missed. I still have so many questions to ask, and experiences to reminisce and contemplate that I am simply heartbroken; as so often is the case: I want one more day!

On the other side of the coin, I am extremely blessed, grateful and happy. I have a wonderful husband that I admire, love and appreciate more than words can say. We have four remarkable children and five amazing grandchildren. I have friends and family that love and support me, and a life that is sometimes challenging, but always rewarding, full and worth living.

 I am discounting none of this, but despite having it all, I still suffer from sadness, and that is OK. 
Sadness and grief are a part of life; an essential part of life. The only way to avoid heartache is to have not experienced joy; to live in a box and allow no one to penetrate your heart. For me, this is not an option and I realize it is because of the life that we shared, the memories that we made, and the time that we spent together growing up, that I am paying the price; the price of heartache for having the privilege, of having someone so special in my life. Without all of the joy, the pain would not be so severe; and I am honored to have been given the opportunity to have such a great partner in crime, to maneuver through childhood and into adulthood with; our friendship will always be cherished.
The most difficult part of losing my dear friend is the reality that we must all face the world without his bright light; his sense of humor and his unrelenting desire to help others. He was not through living and I know in my heart of hearts that God is probably having a difficult time convincing him that he really is where he is meant to be.

My heart not only breaks for me, it breaks for his devoted wife, his parents, his sister and her kids and a sea of friends that he has left behind.


Some things are just so hard to accept......Live, love and make each moment count.

Thursday, November 20, 2014

The Current PCR; Down, But Still Not Great!

Looking back over the past year, it is not a wonder that my head is reeling and my emotions are all over the board. Last year I was dealing with pain; pain in my hips, feet, back; muscles, joints and nerves. This year I am dealing with a bouncing PCR. I just cannot seem to get it under control; kind of like life.

Last year I had the good fortune of celebrating two negative PCR results. This year I have had PCR results ranging from .432 to .134. I cannot seem to achieve the coveted >.1% to save my soul, despite my maximum 140 mg dosage of Sprycel.

My latest test result was slightly better than the one before at .19, down from .28. I am trying to give my blood the benefit of the doubt by factoring into the equation that I was off of Sprycel, for seven days, due to a mild case of pneumonia, during that time. I will see my oncologist on the 19th of December and will have another PCR test, and I guess we shall go from there. I am praying another drop, preferably below the .1% mark.

On the upside, the increased dose of 140 mg of Sprycel seems to have alleviated all of my pain symptoms! Within the first five days of starting the higher dose, my pain disappeared; while I still suffer from fatigue and minor pleural effusion, I am now able to go about my day, relatively pain free; this makes for a much more enjoyable life. This pain free existence is the main reason that I am reluctant to switch medications. The fear of the “unknown” verses the facts of the “known” are a mental struggle that I try not to engage in. I know that if my PCR does not continue to drop, that a change may be in order, but for now, I am sticking with the plan.


The PCR roller coaster of life continues….But I will never give up hope!

Tuesday, November 4, 2014

Life is Precious: Make Time for What is Important!

Last night, right before bed my daughter shared a special gift with me. It was not wrapped in a pretty package, and was not something that I could hold, eat, wear or look at, yet it was a precious gift; a gift that makes your eyes fill with tears and your heart swell with love and gratitude. Gratitude for time well spent and a gift that will be forever held in my heart.

As many of you may remember, Joe and I had the privilege of home-schooling our ten year old grandson; for one semester. It was something that he had been begging his mother to do and something that we felt would be a “once in a lifetime” experience for all of us. It wasn't always easy, and I was often exhausted and exasperated, but knowing how much it meant to him; it was worth it.
In my opinion, there is nothing more important than relationships. Investing time and effort into our children’s and grandchildren’s lives’, as well as our own, is priceless. Life is meant to be lived and to be shared and we will be remembered for the memories that we created, not by the things that we own, or the vehicles that we drove.

The gift of time is not something that can be replaced with electronic devices or toys and as parents and grandparents we only have a short window of time in which to nurture, guide and enrich our children. It is our “job” to give our children the tools that they will need to be prepared to build the best life that they can, for themselves and their own children. I am honored to have been able to allow a little boy the experience to be able to write the following paper for an assignment that was “An Important Time in His Life.”

In Jack’s own words:
                    Idaho
It was the year 2012. I was 9 years old, and my baby brother was almost one year old. At the time, I disliked him because he was annoying. Because of so, I preferred to stay in my room, or go outside more, to try and avoid him. A few months later, it was December. I got sick of going to public school, so I begged my mom for days to home school me. But one day she had finally said yes.

I was so happy, I started jumping with joy. But instead of home schooling me herself, she said my grandparents would in Idaho. I was even more happy, but I realized, I had to say goodbye to all my friends and family for 6 months. I had made the decision, and decided I would  go. A month later, it was January, my birthday had just passed, and it was time to say goodbye. Once I did, I was excited to finally go. Later, once I got there, I was picked up, and taken to their house. Once I got there, I realized that where I was, was nothing like what I had ever seen before in California. It was beautiful, I was blown away of what was before me. The whole neighborhood was even called "Osprey".

The view of my front porch was like watching God's front yard. What nature was in front of me there was a "V shape" of two mountains close to each other. One had many trees and another had less. For the neighborhood it's self was outstanding. Instead of flatland on a street, this whole neighborhood, was on a mountain. That's right, a whole mountain. for a road, there was a trail that marked tracks for a road, no concrete, just dirt. People owned horses, and the neighborhood was even bumpy, with small hills, my backyard led to a hiking trail, and there were no street lights, no light pollution, and at night, there is only one noise that we hear. The most astonishing, most unique feature about this place, is the fact that we have in Osprey, Elk. Every single night, there are always elk. We always hear them calling, their footsteps, and even when they eat grass. This whole neighborhood struck my heart with wonders. I never wanted to go back home. This was my home.

While I was there, I made two friends. they were both nice, and I still contact them today. During winter we had to stack wood because it was snowy. All was great though.

Throughout the months, I was doing great in home school. I was going through it very fast, I knew it would end well. On May 21st, I had finished my year, I hadn't but to believe it. I was so amazed at the fact that being homeschooled, in such a beautiful place, would help me finish early.


But eventually, It was time, I had to leave. I was trying to find a good way to convince my grandparents to stay but, it wouldn't work. I had to say goodbye to everything there. It was so hard, but I did. When I got back, I saw why I was so surprised of Idaho, why it was so difficult to believe. It was because where I live now, is not peaceful, not beautiful, and not settling. No elk, no peace, and no relaxing. Here in South California, I seem to feel sad, depressed, and lonely. With my friends gone, I don't have to many others to contact, and get together with. School hits me the most though. Which is why I think of Idaho as the one place to go after a long, exhausting, period of school.

Saturday, October 4, 2014

Survivor vs Fighter: Let Us Light the Night

After fundraising and walking in my first Light the Night walk for the Leukemia & Lymphoma Society, I must say that I have mixed emotions. When we went to check-in and pick up our t-shirts and lanterns a few days before the walk, I realized that I did not fit into any of the three categories offered: Supporter, In Memory, or Survivor.

As a person that has chronic myelogenous leukemia, I want nothing more than to be what I consider a Survivor. To me, a survivor is a person that has faced cancer, endured treatment and succeeded in kicking cancer’s butt to the curb. To me, “survivor” implies that I have faced the devil and won; I have completed my treatment and come out on the other side; the Survivor’s side.

Now, I do not wish to sound ungrateful, since I am very fortunate to have treatment available to me which allows me to continue to survive, but that treatment is not a cure; it is a daily dose of really potent medication, which  comes with its’ own host of side effects and risks, and is not the be-all-end-all. Not to mention the fact that my type of cancer, CML, can stop responding to the current treatment, whenever it chooses to rear its’ ugly head. I am still holding out for a “true” cure; I am holding out and helping to raise funds so that I too, will someday be able to carry the “survivor” lantern and truly be “cured”; a true Survivor.

Until then, I consider myself a “Fighter”! I fight every single day to keep my CML under control. This past year, I have gone from an undetectable state,  back to a detectable state, with numbers higher than what is considered “optimal”; what this means is that I need to start fighting a little harder. I need to be more aggressive in my treatment, in order to try and turn this upward trend around.

Thus far, the aggressive treatment has resulted in a case of pneumonia and pleural effusion, forcing me to abandon all treatment for seven days; always a scary, but necessary option. I will just have to wait until my next PCR to see how this complication has affected the burden of leukemic cells in my body. So, needless to say, being a survivor in my mind means not having to be monitored every three months, and in treatment for the rest of my life; always making adjustments to the treatment, based upon my three month test results.

After pondering my realization over night, I decided that I was not the only person in this boat; I am certain that there are many other walkers that are still in treatment, fighting every day. Since I feel that this walk exists to raise money for research for a cure, shouldn't current patients be represented by their own t-shirts? Shouldn't other walkers be able to see that their donations have cured many, but that there are many more, that are still praying and hoping for a cure?

Those of us with chronic leukemia and those fighting every day in treatment for other type of Leukemia and Lymphoma are not yet “Survivor’s”.  Fact of the matter is, some of us will make it and some of us will not, and to be lumped into the Survivor category just doesn't seem quite right. Shouldn't we be represented as the Fighters that we currently are?

Anyway, I went to the t-shirt shop and added (Fighter) to my t-shirt, right underneath Survivor. Despite having (Fighter) on my t-shirt, I was still bombarded by other “white lantern-ed” walkers. Guess what their first question to me was, over and over and over? Their first question to me was, “How far out are you?” Of course, I had to reply, “I am not out, yet; I am still fighting. How far out are you?” I have to tell you that the look of joy and accomplishment on their faces, made me want a cure more than ever. I was so very happy for each and every one of them, but I have to admit that I was a bit envious, too.  By the end of the night, I was actually weary of showing my “happy” face, and trying really hard not to let the fact that my CML is not in a great place at the moment, dampen my spirits.

Of course, looking around I was reminded how truly grateful I am, that I was still here surviving, and not being represented by a gold lantern (in memory), but there is a place in my heart that remembers all of those we have lost to CML,  just this past year alone. I was walking as a Survivor, and my husband was carrying a Gold Lantern for Cheryl Hay, Michael Cranford, Millie and Danny Eiler, just to name a few. I love what Light the Night represents, but I also feel as though those of us that are still fighting the good fight, need to have their very own category.


What do you think?

Friday, October 3, 2014

Light the Night Gratitude

I have never been a great fundraiser; I used to cringe every time that my kids came home from school with a new one. We have sold candles, cookies, pizza, magazines, wrapping paper, Christmas cards, stuffed things, pretty things and scary things; all things, which I could have done without! I always wished I could simply donate the full amount directly to the cause, without having to add something to my shelf, or my waistline!

Since being diagnosed with leukemia three and a half years ago; I have found myself the recipient of many generous acts of kindness; both spiritual and tactile. This has inspired me to become a better fundraiser and to find a way to give back.

My first effort at fundraising was three years ago; I joined Bricks 4 the Brave in collecting Lego’s and Duplo’s for children that are ill, and often face long stays in the hospital; knowing that these sets of Lego’s would help to distract, entertain and put a smile on a child’s face. I was shocked at the support that I received and have been able to donate several hundred boxes of Lego’s and Duplo’s,  to the Boise and Phoenix Children’s Hospitals; once again, with the generosity of so many! This is a fundraiser that is very close to my heart.

This year, I decided to also tackle the Light the Night Walk fundraiser, which is put on by the Leukemia & Lymphoma Society; I had doubts, many doubts that I would even be able to raise a nickel for this cause. Like I said before, I am a lousy fundraiser and full of self-doubt! What I did not realize was how many generous people I know. I started the fundraiser tentatively, in high hopes of raising $500. I never even dreamed that we would reach that goal!

Thanks to so many, we reached our original goal in record time, so we decided to trust in all of you, and raised our goal to $1000. Shockingly and gratefully we reached that goal, too. We took one more chance and raised the goal, once again, to $1500; and guess what? Yup, we reached and exceeded that goal, too! As of the walk yesterday, we raised an impressive $1605! None of this would have been possible without all of you! Our heartfelt thanks go out to our many, many supporters; friends and family alike!

We couldn't have done it without all of you, and we are truly grateful. My belief in the generosity of others has been lifted to the moon and back, and witnessing the support of so many makes my heart swell with joy, and trust that someday, I will be cured!

Thank you so much for your donations and continued prayers and support. With people like you behind me, cheering me on, my fight becomes fiercer and my battle less burdensome; thank you for helping me carry my load!

With Sincere Gratitude,
Michele (and Joe)




Friday, September 26, 2014

Sprycel and My Left Lung; Who Do I Choose?

Apparently I am not the only one dealing with a hacking cough and shortness of breath, so here goes; a few weeks ago I began my yearly hacking. For some reason or another, I always seem to get a good bout of bronchitis around August, September or October; this usually occurs in conjunction with a mild case of pleural effusion.

Typically my oncologist prescribes Advair and Albuterol to help alleviate the symptoms and puts me on a Sprycel vacation, until I feel better; this usually takes a week or so. This year, since I actually have a “doctor” in town, I thought that I should go and see her, and have her assess my condition. Last week she confirmed that I had bronchitis, with reduced breath sounds in my left lung.

Being the totally thorough physician that she is, she put a pulse oximeter on my finger and walked me around her office; and then proceeded to tell me that my oxygen levels dropped significantly and that I needed to stop dancing, and go home and rest! She gave me a breathing treatment and confirmed that my breathing was “better”, so I promised to “rest” after teaching three hours of dance class that night!  She also said that if I was not better in one week, to have a chest x-ray.

Fast forward one week and I am still hacking and feeling like crap, so I get the chest x-ray. Now, I must preface this with “I LOVE Boise, and my doctor!!” Within 10 minutes of my chest x-ray, the doctor was on the phone telling me that she saw a minor effusion, but thought I might have pneumonia brewing and she wanted me to start on an antibiotic immediately.

I told her I was in the Costco parking lot and asked her if I could pick up the antibiotic there. By the time I got out of the car and walked to the pharmacy, the order was in the pharmacists hands; now that is efficiency at its’ best!

She prescribed azithromycin because of my many allergies and sensitivities, and after talking to the pharmacist, I decided to stop the Sprycel until I talked to my oncologist, as it has a moderate warning of QT prolongation, when taken at the same time.

So now the dilemma begins; I get home around 11 pm and email my oncologist; he replies at midnight that he does not believe that I have pneumonia and that she is just seeing the effusion. He agrees that I should not take the azithromycin and the Sprycel at the same time, and does not think that I need the antibiotic. I go to bed frustrated and confused! Lol

The next morning I page my oncologist to discuss my dilemma, this is how the story goes; “Michele, you did not mention having a fever, and you have had this before. I believe that you are experiencing side effects to the higher dose of Sprycel. Pleural effusion “looks” like pneumonia; I see it all of the time.”

Me: “But I do feel like crap, am coughing like crazy, and short of breath.”

Him: “Yes, that is common with effusions; they can create friction between the lung and the outer sac causing coughing, shortness of breath, etc. I can just about 100% guarantee that you do not have pneumonia, but you do need to go off of the Sprycel until these symptoms improve. I have no objection to the antibiotic; you and your doctor can decide what you feel is best regarding that, but I do not think you have pneumonia. I am afraid however,  that you may not be able to tolerate this dose of Sprycel and we may have to consider switching to Tasigna.”
Me: “Noooooooo, I will be fine on Sprycel as soon as I get over this bronchitis!”
He chuckled and then said that he wouldn't make any changes until my next appointment (in December).

So, here I once again have to decipher what is best for me; one doctor says this and the other says that. The problem is that I trust both of them and that they both have valid points; I do however believe that my oncologist has far more experience with the whole PE portion of the equation, and since I have not had fevers to indicate infection, I am leaning towards his explanation. But, with a strong desire to get over this and back on the Sprycel, I figured that since I was off the Sprycel anyway, I would go ahead and take the antibiotic as a precautionary measure. Since I am so anti-drugs; this was a difficult decision to make.

Conclusion: It has been two days off of Sprycel and two days of the 3 A’s: Azithromycin, Advair and Albuterol!  I am feeling better, but that could also be due to the fact that I am not running around or dancing and am doing little more than sitting on the couch!

Goal: To kick whatever the heck I got going on and get back on Sprycel so I can kick some more CML butt!


Oh, the dilemmas of CML….

Sunday, September 21, 2014

Cheryl Hay Earns Her Wings: Her Story

I believe that the passing of CML sister, Cheryl Hay, on September 22, 2014 (Australian time) is no coincidence. I believe that Cheryl was sent to us to inspire and motivate us with her non-stop humor, courage and optimism, and that she left this world on National CML Day for a reason. That reason being to encourage us to do everything that we can to help raise funds to find a cure for this disease. One of the goals on her Bucket List is to raise one million dollars for research; this is the first year that we have done the Night the Light Walk for the Leukemia and Lymphoma Society and our goal is $1000. Next year, we have already decided that our goal is going to be $20,000.

National CML Day will never pass again without me, and hundreds around the world remembering the strong, young, optimistic, young lady that faced CML like a true warrior. She never complained and faced each and every challenge with a big smile and an even bigger dose of optimism; she shared her journey with us and taught us how to live, and die with grace.

Sharing her journey hits home to many of us that are currently living with CML; it is only natural for us to put ourselves in her shoes.  We love hearing success stories and hate hearing about battles lost; fact of the matter is that both are a reality, and that we will continue to hear stories of triumph and tragedy, for the rest of our lives.

What we can do is continue to live well, enjoy our lives’, tick off our Bucket Lists and help to raise money for a cure. We can do this in Cheryl’s honor and the honor for all of those that have also lost their battle with CML.

For those of you that are wondering, here is Cheryl’s journey, in her words:

“Just quickly for those of you whom do not know my story. I was diagnosed with CML in June 2012 and tried Glivec, Dasatanib and Nilotonib with no luck at keeping my CML under control. The TKIs either gave me nasty allergic reactions (a seizure being one!!) or just didn't work (at one point of time my PCR was 203%! The ideal range is 0.0%!!

In Sept 2013, I developed a huge swollen lymph gland in my neck and luckily my Haematologist was all over it when I saw him. After a whirlwind of days of tests he informed me that my CML was now in 'blast crisis' (it presents the same in the bone marrow biopsy as Acute Lymphoblastic Leukaemia (ALL). I had to commence chemo the following week. I would have chemo for 3 months and then have a Bone Marrow Transplant. There was no time to freeze my eggs beforehand so I will now no longer be able to have children. If I do not have this treatment I will die in a matter of months. Due to my uncontrolled CML journey, previous cancers, etc I am a 'high-risk patient of relapsing post BMT' Phew! Quite a lot of info to take on board!!

So originally I was meant to have BMT around Xmas, however I became very unwell with an infectious virus so it delayed treatment. Subsequently in March-another huge setback-BOTH anonymous BMT donors lined up for me FAILED THEIR MEDICAL TESTS!! What are the odds of that happening right??! So the BMT team had to re-commence a whole NEW search for a donor!
Anyway, today is the day that the process 'officially begins!' I still cannot believe after all the bumps, tears and set-backs that it is really happening!!!

Today I am having my Central Line inserted and will commence pre-BMT Chemo.

I will go to the Chemo Outpatients Department every day, up to and including Tues (when I will be admitted to hospital) Wed I have chemo but Thurs there is NONE (they call it a 'REST DAY"-sounds nice doesn't it??) MY BMT is Fri June 6th.

I'm feeling very confident about the BMT being a success against my CML. We don't receive much info about our donors obviously due to confidentiality reasons, however I do know that the donor is a young 24yr old Aussie male, and our tissue typing is a perfect 10/10 match! You cannot ask for better stats than that! Obviously I am still nervous but I am just so relieved my transplant is finally going to happen and cannot wait to beat leukaemia and be able to live life again!”

Once stating her story, Cheryl continued to share her journey; the good the bad and the ugly of it, right up until the very end; she fought long, she fought hard and now she is at rest.

There will be no more pain for Cheryl; I can only hope and pray that I have her sense of grace and peace when it is my turn.


Thank you, Cheryl; your light will continue to shine.

Please consider donating to our Light the Night Walk in Cheryl's honor.

Friday, September 19, 2014

Odd Sprycel Findings

As many of you probably remember, this past year has been no picnic! It has been filled with pain; I have had extreme pain in my back, the bottoms of my feet and in my hands. That pain sent me for an MRI and a visit with a neurologist for tons of testing; all results led to the fact that the source of my pain stemmed from side effects of Sprycel, which was no surprise to me.

Because of the pain, and two negative PCR’s my oncologist and I felt that a medication reduction was a viable option to see whether or not the reduction would reduce the pain while holding the CML at bay. Unfortunately the pain continued and my PCR rose; it went from 0% to  .432%, to  .468% in a short period of time. This resulted in an increase of my Sprycel dosage, which resulted in a better PCR of .132%.

This made me very happy, however, the party was short lived. Four weeks later my PCR crept up again to .236%. So, needless to say the roller coaster ride continues; I have recently reached the highest recommended dose of Sprycel , of 140 mg, seven days a week.

Here is the kicker! I was petrified to increase my dose of Sprycel anticipating that my pain was going to sky rocket out of control. I did not know if I would be able to handle any more pain. Guess what? After just two doses of 140mg, my pain began to subside; I gingerly continued to swallow my 140 mg tablets before bed, waking curiously, wondering whether I would be wracked with pain, or pain free.

It has now been a little over five weeks on this high dose of Sprycel and I am here to say that my pain is almost completely gone. I have not been this pain free in years, and am thrilled that there is a silver lining in my current state. I can now walk and dance, bend over and my hands are no longer falling asleep and waking me up throbbing, in the night! I am in heaven!

I find this very interesting, I was in tons MORE pain on a lower dose; I fought to lower my dose because I thought that a lower dose would mean less pain, as it turns out,  it is exactly the opposite; higher dose = less pain: Go figure!

Now, if I can just hold the pleural effusion at bay and get my PCR under control without damaging my internal organs, I will be dancing at the Light the Night Walk on October 2nd, 2014!

Keeping my fingers crossed for an excellent PCR; it will be drawn in two weeks!


Wonders never cease to amaze me….

Wednesday, September 17, 2014

No Ice Bucket Required!


Did you know that even though blood cancers have not gone “famously -pink” they have paved the way for better therapies for many types of cancer?

Did you know that collectively, blood cancers account for approximately 10% of all cancer deaths making the them second most common cause of cancer death; lung cancer being number one?

Did you know that more than one million adults, living in the US, are living with a blood cancer? And that leukemia and lymphoma account for nearly half of all childhood cancers?

And that approximately every three minutes one person in the United States is diagnosed with a blood cancer and approximately every ten minutes in the United States a person dies from a blood cancer.

The good news is that they are making great strides in the treatment of Leukemia and Lymphoma, which is also leading to breakthroughs in other cancers.

Since September is Blood Cancer Awareness Month, it is a perfect time to donate whatever you can to the continued research of blood cancers. No amount is to small and you do not even have to dump a bucket of ice water on your head!

Just think, if 100 people donated $5 (the price of one cup of Starbuck’s) one time, that would be $500 towards cancer research. If those same 100 people donated a $5, once a week, for the month of September, that would be a crazy number of ($20x100) of $2,000!! And imagine if those people “challenged” their friends to do the same!

I know it doesn’t seem like much, but honestly, every penny helps! I know that every time I donate to a good cause, it makes me feel good! And if you or a loved one is ever diagnosed with cancer, it will make you feel even better!

So please consider donating today! We are 37% of the way towards our $500 Light the Night Walk Goal. I would love to double that considering I have almost 2000 “friends” on face book, it should be a breeze!

I don’t beg often, but September is an exceptional month; it is Blood Cancer Awareness month, and I am alive because of people that have donated in the past!

Thanks in advance for however much you can spare, and are willing to donate to our Light the Night Walk Fund.


If you live in Boise, and would like to join us in our efforts, or just on the walk, please come out and take the steps that are needed to cure cancer! It will be at Ann Morrison Park, at 5 o’clock, in Boise.

Sunday, September 14, 2014

September is Blood Cancer Awareness Month: Light the Night Walk!

I have been living with Chronic Myelogenous Leukemia, a cancer of the blood, for the past three years and seven months. It is a journey that has led me down many paths with the most apparent and difficult path being my treatment, which is ongoing and comes with a plethora of complications which create a never ending roller coaster ride. Another path that I have traveled is the birth of my blog. My blog began as a way to educate myself and to keep my friends and family updated as to my condition and progress; it has morphed into a blog that is read worldwide, with nearly two million page views. Who knew? I never would have thought of myself as inspirational! Lol

Living with CML has also led me down a path that has allowed me the opportunity to meet many others living with the same chronic cancer; this is a blessing and a curse. The blessing part of this opportunity is the friendships that I have made near and far; when you live with a chronic cancer, with no “visible” signs of illness, most people can never grasp what living with a chronic cancer is like; knowing others with the same disease allows us to relate to each other in a manner that no one else would understand. The curse part of this path is the blatant fact that people die; people that you have gotten to know and share a very raw bond with; die. It is a painstaking reality that none of us, ever get used to.




This leads me to my favorite path; the path of helping others; since September is National Blood Cancer Awareness Month, I have collected Lego's for ill children at St. Luke’s Hospital, in Boise, for the past two years. It is my way of giving back to the small warriors that are battling this, and other diseases. Brick's 4 the Brave: Put a Smile on a Child's Face!

This year, Joe and I have also decided to walk in the Light the Night Walk, for the Leukemia & Lymphoma Society’s yearly fundraiser. I have never participated in a fundraiser, other than the Lego’s in my life, so I am not really sure how to go about it, so I am throwing it out there; no donation is too small. I would love to be able to raise $1000 to help find a cure, not only for me and my friends, but for anyone that currently has, or will someday be diagnosed with a blood cancer.

Also, if you live in Boise, and you would like, you can join us on our walk and join our team. The walk is on Thursday, October 2, 2014, at Ann Morrison Park. I will hopefully have more details than this, soon.

So, if you are so inclined, please visit my Light the Night Walk Team Page and donate and join our team; Dancing My Way Through Leukemia! Joe and I will be walking for me and my friend from Australia, Cheryl Hay who is reaching the end of her journey.

Lego’s can either be brought to a local dance, or mailed directly to me; Amazon is super easy, just be sure to add your name to the gift card, so that I can give you a great big thanks!

Michele Tschirhart
83 Falcon Dr
Boise, Idaho 83716





Thursday, September 11, 2014

Bricks 4 the Brave: Put a Smile on a Child's Face!


As many of you already know, I was diagnosed with Chronic Myelogenous Leukemia (CML) on February 9, 2011. It has been a three and a half years and life has been full of twists and turns, ups and downs, goods and bads! I have been diligently following my oncologist’s treatment plan and am making progress. It isn't always easy, but somehow I make it all work!

Living with Leukemia has definitely encouraged me to look at life a little differently; I feel more blessed each and every day and understand that every day is a gift. It does not take much to brighten the day of another person; sometimes it only takes a smile or a touch.

Since September is National Leukemia Awareness month, I thought it was the perfect time to put a smile on the face of a child, that is suffering from Leukemia. Bricks 4 the Brave is an organization that is based purely on volunteer participation. The hospital that will be receiving the Legos is St. Luke’s Children’s Hospital, in Boise, Idaho.

Please help me to honor and humor these brave little warriors with a set of Legos. Legos will help them pass the many hours of isolation that they often spend in treatment. Many of the children that are diagnosed with Leukemia will undergo a bone marrow transplant which is a lengthy process that leaves them often alone, with no distraction; Lego's will help! The “cure” rate of children with leukemia is generally higher than it is for adults; Thank God. But ask any child that has leukemia and they will be certain to tell you that their treatment  is no “walk in the park”!

You may enjoy becoming “fan” of “The Leukemia Slayer”; Jacob. Jacob is an inspiration to any and all that have managed to find a way into his world. He has battled Acute Lymphoblastic Leukemia (ALL) since December 2, 2010 and recently reached the end of his treatment. (March of 2014.) Of course, he is still dealing issues from his treatment: but continues to help so many others.  Please stop by and become a fan; you will be glad that you did!

Anyway, back to Legos for Leukemia; there are three easy was you can join me.
         1.       Purchase a set of Legos and either drop it off, or mail it to me.       
         2.       Purchase a gift card from either Walmart or Target and mail it to me; I will shop for you!
         3.       Shop at Amazon and have your choice sent directly to me; many of the Lego sets offer Prime Shipping    at no charge. I put a few suggestions here: Legos for Leukemia

As you can see, shopping online would probably be the easiest way for you to join my Legos for Leukemia drive. The kids and I appreciate all of you donations!

Thank you, in advance: 
Michele
Please send Legos to:
Michele Tschirhart
83 Falcon Dr
Boise, Idaho 83716

Monday, September 8, 2014

Death and Dying; It is OK to feel Sad

For the better part of my life, my “friends” were people that I met within the vicinity of where I lived. They were people that I met through common interests; people that I saw at the grocery store, the mailbox, the park or even at the doctor’s office. Today, much of that has changed; because of the internet, I have made friends with common interests, all around the world.

As luck would have it, some of my dearest friends have been become so, by sharing a very rare cancer; chronic myelogenous leukemia. For those of us that have found each other in various groups, this blood cancer doesn't seem all that rare, because all of us have it. Truth be told, there are only approximately 75,000 people in the United States, living with CML; when you compare that to the approximate population in the US of 313.9 million people, we really are a drop in the bucket.

This being said, it is not uncommon for those of us in CML “groups” to experience the death of a friend. The past few months have been particularly brutal in that department; we all have lost quite a few blood buddies. Right now, my focus is on my friend, Cheryl Hay. I “met” Cheryl almost two years ago,and was immediately drawn to her wit, her sense of humor and her tenacity; this coupled with the fact that she lives in Australia and has a most fabulous accent, made her extra special, in my book and we quickly became “friends.”

Unfortunately, Cheryl’s CML journey has not been an easy one; her CML quickly progressed into Blast Crisis, and a bone marrow transplant was her only option for survival. I shall not delve into her medical details, except to say that Cheryl did indeed receive bone marrow transplant; but unfortunately, despite her optimistic spirit, her valiant fight and tenacity, she has lost this war.

She never gave up, yet Cheryl is dying; and in typical Cheryl fashion, she has accepted her fate with grace and strength. She is at peace with her prognosis and even states in jest, that eventually there will be “no more suffering for Cheryl.” She said that she was glad that she “traveled the world when she did, and went bungee jumping, sky diving, etc.”

Where does this leave us?

Vulnerable, sad and a bit lost.

It leaves us with aching hearts, and that is OK. It is alright to feel sad, it is alright to be angry that Cheryl has traveled an extremely bumpy road, and did not reach the crest of the hilltop. It is ok to feel these things; it is normal, so allow the tears to fall, allow yourself to feel sad, but don’t forget to add laughter to your tears, because believe me, that is what Cheryl would want.

And while we are on the subject of aching hearts, my heart not only aches for Cheryl, but aches even deeper for her parents. Her parents are the warriors that will be left behind; they are the warriors that are standing by their daughter’s side; helpless, unable to do anything except comfort her, be there for her and pray that her suffering is minimal, and ends quickly. I cannot imagine their pain and I wish that there was some way, to ease their sadness and devastation.

Cheryl’s dying leaves those of us living with CML, with another hole in our heart; another taken too soon from this disease. We all have so many questions, fears and concerns; but those can wait. Right now all we can do is hold Cheryl close in our hearts and pray that she is pain free, and able to complete her bucket list, which mostly seems to consist of visiting with family and friends, and saying Good Bye; Cheryl is one amazing woman, let’s pray that she will be well enough to do so!

Now, to help many of you that are struggling with Cheryl’s dying, and her self-professed peace, I am going to tell you a story: it is a personal story that allows me a snippet of a glimpse, of how I believe that Cheryl may now be feeling.

A decade-ish ago, I had surgery to remove ovarian tumors; I was forewarned that the recovery was going to be brutal, and it was. I developed an infection several days post op and was near death; the hospital staff even had a student nurse in my room around the clock, monitoring my every breath and encouraging me to fight. What I remember from this time was being so sick, that all I wanted was to be left in my own little world; I did not wish to return to the real world.


The world that I had fallen into was a world that engulfed me in a way that sheltered me from my pain; I remember feeling completely at peace and utterly calm, and wished only to exist in that world. I swear that it was either angels or the Heavenly Father Himself, which wrapped their arms around me, and held me tight. I felt no fear and had lost that innate sense of fighting for survival; I was at peace, and was comfortable with dying. I did not have any regrets or any unfulfilled wishes; I was calm, accepting and very much, I believe,  right where Cheryl is, right now; simply at peace.

I know that this may be difficult to comprehend, as sometimes it is hard for me to even look back and remember, but I truly believe that those of us that will knowingly face our own deaths’ will have nothing to fear. We will be able to face death with the faith, courage, strength and grace that our dear friend is currently, and graciously allowing us to witness.

Cheryl Hay is a warrior that has allowed us to share her journey; the good, the bad and the ugly and I am honored to have been a witness to this incredible, beautiful woman’s life.

Thank you Cheryl for the laughs, the love and the strength which you have shared; I shall carry your grace and faith with me, all of my days; May God Bless you, and hold you close during your final journey.


You rocked it, sister! I am proud to be your friend!


Saturday, September 6, 2014

Riding the PCR Roller Coaster!

Living with Chronic Myelogenous Leukemia is nothing short of a roller coaster ride; it is full of ups and downs. Most days I meet these challenges with a smile on my face, a stomp in my step and a bit of stubbornness in my attitude.

Yesterday, there were a few tears thrown into the mix; I received my latest PCR result of .28% on the International Scale, which was a huge disappointment after having a .134% results two months prior. This year has proved to be a bit of a challenge, in the PCR department.

I started out the year with two negative PCR’s which led to a decrease in the dose of Sprycel, all the way down to 70mg. The main reason for the decrease in medication was due to the increased pain that I was constantly in. The pain was so severe (back pain and peripheral neuropathy in my feet, hands and legs) that I was sent for MRI’s, Nerve Conduction Studies, Electromyograms and a plethora of blood work; all of these tests were negative, thus correlating the pain to Sprycel.

Oddly enough the pain continued regardless of the decrease in medication; the only thing that did not remain, was my negative PCR. My PCR literally jumped from a negative state to .432%; not only was I shocked, I felt terribly deflated. I felt as though I had failed my body once again. I felt as though I had once again lost hold of the grip, which I had on CML.

I believe that after three and a half years, the realization that CML is just an unpredictable cancer has finally sunk in. I believe that I am at the point of acceptance; I accept that fact that I cannot control this disease; I can only follow the advice of my oncologist and pray for good results. I can eat well, exercise, get enough rest, take my medication, pray and then deal with the PCR results, as they come.

I cannot become impatient, or dwell on the uphill battles; I must enjoy the ride, for it is the ride that I am on, even though I did not choose to purchase the ticket! I must allow myself moments of sadness and frustration from time to time, as this is only normal, but once those moments pass, I must pick up my boots straps and get back in the front car of that coaster, and hang on for the ride!


Suck it, CML! You may mess with my blood, but you shall not mess with my soul!

Monday, September 1, 2014

National Leukemia Awareness Month; Help Me Collect Bricks for the Brave!!!


As many of you already know, I was diagnosed with Chronic Myelogenous Leukemia (CML) on February 9, 2011. It has been a year and a half since that diagnosis and life has been full of twists and turns, ups and downs, goods and bads! I have been diligently following my oncologist’s treatment plan and am making progress.

Living with Leukemia has definitely encouraged me to look at life a little differently; I feel more blessed each and every day and understand that every day is a gift. It does not take much to brighten the day of another person; sometimes it only takes a smile or a touch.

Since September is National Leukemia Awareness month, I thought it was the perfect time to put a smile on the face of a child, that is suffering from Leukemia. Bricks 4 the Brave is an organization that is based purely on volunteer participation. The hospital that will be receiving the Legos : Bricks 4 the Brave is St. Luke’s Children’s Hospital, in Boise, Idaho.

Please help me to honor and humor these brave little warriors with a set of Legos. Legos will help them pass the many hours of isolation that these kids spend waiting for and then recovering from a bone marrow transplant. Many children that are diagnosed with Leukemia will receive a bone marrow transplant. The “cure” rate of children with leukemia is generally higher than it is for adults; Thank God. But ask any child that has leukemia and they will be certain to tell you that the treatment to cure them is no “walk in the park”!

You may want to become a “fan” of “The Leukemia Slayer”; Jacob. Jacob is an inspiration to any and all that have managed to find a way into his world. He has been battling Acute Lymphoblastic Leukemia (ALL) since December 2, 2010 and completed treatment in March of 2014; Go Jacob!!!. Please stop by and become a fan; you will be glad that you did!



Anyway, back to Bricks 4 the Brave; there are three easy was you can join me.

         1.       Purchase a set of Legos and either drop it off, or mail it to me.       
         2.       Purchase a gift card from either Walmart or Target and mail it to me; I will shop for you!
         3.       Shop at Amazon and have your choice sent directly to me; many of the Lego sets offer Prime Shipping    at no charge. I put a few suggestions here: Legos .

As you can see, shopping online would probably be the easiest way for you to join my Bricks 4 the Brave drive. The kids and I appreciate all of you donations!

Thank you, in advance: 
Michele
Please send Legos to:
Michele Tschirhart
83 Falcon Dr
Boise, Idaho 83716

Wednesday, August 27, 2014

Tki’s and High Cholesterol; Drug Interactions

Since beginning treatment for chronic myelogenous leukemia, three and a half years ago, my body has found many ways to respond. One of these ways is by developing high cholesterol; now I know that many people suffer from high cholesterol, but prior to my CML diagnosis and subsequent treatment, I had very low cholesterol, and if anything has changed, I would say that my overall diet is better now than it was prior to diagnosis.

This coupled with the fact that so many other people that are being treated for CML, have also developed high cholesterol, leads me to believe that the TKI’s are to blame. Putting blame aside, the fact of the matter is that despite everything I have tried; diet, red yeast, oatmeal, Niacin and anything else that claims to lower cholesterol, my cholesterol levels have continued to climb.

And yes, I am aware of the good vs the bad cholesterol and mine was plain and simple, just TOO high and TOO low; good and bad! When it reached 318 my internal medicine doctor strongly recommended trying a cholesterol lowering medication. She knows how reluctant I am to take medications for many reasons, but really felt that if I did not get my cholesterol under control, I could get myself into trouble. So reluctantly I agreed.

She prescribed 40mg of Atorvastatin once a day, beginning with half of the full dose for a week, to see if I could tolerate it. Since my greatest fear of cholesterol medications is the often accompanying muscle pain, she recommended that I take QCo10 along with the Atorvastatin. I was told that the medication works fairly quickly, but not to expect results to show up for several months.

Reluctantly I downed my first dose and waited; no immediate reaction, so I went to bed. I am such a freak about medication! I woke up the next morning relieved that I had survived the night and had no apparent side effects from my first dose. As the week went on I began to dread the increase and decided that since I was seeing my oncologist two weeks after starting the Atorvastatin that I would just keep taking the 20mg daily, and see what he had to say. I figured I could always increase my medication, but if I were to respond to the lower dose, we would never know, if I increased it right away.

What he had to say was, “Wow, you finally have your cholesterol under control, it is down to 176!” and I then told him about the Atorvastatin. He was pleased that I had finally agreed to take the meds, but was concerned about the dosage. Apparently Sprycel increases the amount of Atorvastatin in the bloodstream, hence the excellent results, in a two week timespan. He was very relieved that I had stuck with half of the full dose and feels that I should never take more than 20mg, and that 10 mg will likely be the best dose for me.
Of course he told me to check with my prescribing doctor, and to tell her about the interaction between Sprycel and Atorvastatin. Note to self; check with oncologist prior to taking ANY medication. I did have a “blink” that told me to check with him, but figured since he had tried to get me to take a cholesterol meds before, and that I was seeing him in two weeks, I didn’t want to bother him; my bad!

Anyway, I got home and spoke with my doctor and she is going to recheck my cholesterol next week, and based on the results, go from there.

So, the important bit of info here is that if you are on a TKI, you should have your cholesterol checked, and if it is high, you should make certain to check drug interactions with your TKI. Sprycel definitely increase the amount of cholesterol medication in our systems, so make sure that you and your doctors, do your homework.

For more information on cholesterol you can visit the Mayo Clinic’s website, it is clear and concise.

Cholesterol Chart
Total cholesterol
(U.S. and some other countries)           (Canada and most of Europe)        

Below 200 mg/dL                                        Below 5.2 mmol/L                       Desirable
200-239 mg/dL                                              5.2-6.2 mmol/L                       Borderline high
240 mg/dL and above                                  Above 6.2 mmol/L                           High


LDL cholesterol
(U.S. and some other countries)   Canada and most of Europe)
Below 70 mg/dL                      Below 1.8 mmol/L  Ideal for people at very high risk of heart disease
Below 100 mg/dL                     Below 2.6 mmol/L                 Ideal for people at risk of heart disease
100-129 mg/dL                            2.6-3.3 mmol/L                                    Near ideal
130-159 mg/dL                            3.4-4.1 mmol/L                                Borderline high
160-189 mg/dL                            4.1-4.9 mmol/L                                       High
190 mg/dL and above                 Above 4.9 mmol/L                                Very high


HDL cholesterol
(U.S. and some other countries)                                          (Canada and most of Europe)          
Below 40 mg/dL (men)                                                                     Below 1 mmol/L (men)          Poor
Below 50 mg/dL (women)                                                      Below 1.3 mmol/L (women)                                                    
40-49 mg/dL (men) 50-59 mg/dL (women)           1-1.3 mmol/L (men) 1.3-1.5 mmol/L (women)    Better
60 mg/dL and above                                                                           1.6 mmol/L and above          Best


Triglycerides
 (U.S. and some other countries)             (Canada and most of Europe)     
Below 150 mg/dL                                                     Below 1.7 mmol/L                          Desirable
150-199 mg/dL                                                          1.7-2.2 mmol/L                          Borderline high
200-499 mg/dL                                                           2.3-5.6 mmol/L                              High

500 mg/dL and above                                       Above 5.6 mmol/L and above                 Very high

Bricks for the Brave!!