Friday, June 28, 2019

Low Whites, Reds and Platelets

I am not a doctor, I do not have a medical degree, but what I do have is eight and a half years of experience dealing and living with chronic myelogenous leukemia. I have my own personal knowledge, as well as the observations and conversations from many others living with this disease, oncologists that specialize in CML, and pharmaceutical companies which manufacture the drugs that keep us alive.

Not to mention all of the data and research papers that I have studied throughout my journey.

The topic that has prompted this post is the alarming number of newly diagnosed CML patients that are stating that they have either stopped (temporarily) their treatment or had their TKI dropped to a low dose to combat low "numbers" in their CBC, not to be confused with their PCR test results.

The numbers that most of these people are referring to as "low numbers" are white and red blood cells and platelets.

What confuses and frightens me the most is that this decrease in "numbers" is a common occurrence during the beginning of treatment for CML. Experienced CML specialists know this, and know how to treat the neutropenia, as well as the CML.

There are options, besides stopping treatment, or lowering your TKI to a dangerously low dose of medication; ask about Neupogen injections, transfusions and diet to help stimulate your bone marrow into making the desired amount of white and red cells and platelets; eventually, your body will adjust to your treatment, and your CBC will become stable.

While a Complete Blood Count is important to your overall health, it is not the only test that should weigh into the reduction of your life-saving medication. CML can be a sneaky disease, do not allow it to progress silently into blast crisis due to a medication reduction during the initial treatment or your disease.

It is important to remember that you have cancer. Cancer treatment is difficult on the body, it is difficult to maintain "perfect" health during its' treatment, especially in the beginning stages of treatment.

Expect low numbers in your CBC in the beginning, and pray for low numbers in your PCR. Learn what this means and how lowering your TKI dose prematurely can affect you and your CML.

As I have often stated, seek out a true CML Specialist, not just a haematological oncologist; one that is familiar with low counts in the CBC, one that has experience with many CML patients and knows what to expect, and how to treat you accordingly.

Know that in the beginning, your body has much to adjust to and that eventually, it will become accustomed to the treatment and life and living with this disease will eventually become easier. Know that this is a marathon, not a sprint and that you cannot expect to treat cancer without experiencing side effects and speed bumps.

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Friday, June 14, 2019

How and Why I Became a CML Advocate

Sometimes our song finds us!
I am often asked if I have always been a writer and a healthcare advocate. The answer to that question is an unequivocal no.

Before being diagnosed with chronic myelogenous leukemia in February 2011, I would have never dreamed of writing anything that anyone could possibly read. Prior to diagnoses, I was a constant ball of motion, squeaking every minute out of every day; living my life to the fullest.

My spontaneous lifestyle came to a screeching halt when I was diagnosed with CML and hospitalized to begin treatment. During that time I went from being extremely healthy to extremely ill.

My diagnosis was a shock to me, and to everyone that knew me. The most commonly heard phrase during that time was, "But, you're the healthy one!?"

I went from being the person that was always healthy, to the person that now had cancer; cancer that was a lifelong fight.

While I was in the hospital, thanks to social media, my diagnosis quickly spread to all of my friends and family, and the phone calls began.

Do not take this negatively, as I was empowered by the outpouring of love and support, and will be forever grateful, but I was also too sick, and too exhausted to repeat and explain everything that surrounded my diagnosis, my treatment, and my prognosis, to everyone who cared so much about me.

SO! I began a blog. Mind you, I had no idea what a blog even was, or how to start one, so I simply went to "Blogger", picked an orange colored theme for leukemia, and started to write. I explained my symptoms, my diagnosis and everything that I learned about CML and its' treatment.
Sometimes you bloom when you least expect it!

I did this to keep my friends and family updated on my condition, and to help them understand me and my disease.

I never "intended" or realized that anyone else would ever see, or read the words that I had written. If I had, I most likely never would have written, or shared them!

In order for my words to be published, I just write them, and publish them; no re-reading or editing, because if I did that, I would never post another blog in my life, as it would never be "good enough".
I just post with reckless abandon! lol

Shortly after I began my blog, I began hearing from other people with CML. I was shocked that they had "found" me, yet so relieved to hear from others living and thriving with CML.

I was told that they found me by searching for information on chronic myelogenous leukemia, as there was little information, at that time available. I believe I became a connection of sorts, to others who were fighting the same disease as me.

As time went on, and more connections were made, it became obvious that not everyone received optimal care and treatment for their CML. I became close to many, and I witnessed the deaths of people I had come to know and love.

More often than not, it is my belief that their deaths occurred because they received substandard care, from oncologists who were not familiar with CML and its' potential danger.

Because of these losses, I have continued to write, reach out, and speak loudly about the necessity of becoming your very own, educated, self-advocate, searching for the very best care for you and your CML.

Don't be fooled by the phrase, "You are lucky; this is the "good" cancer."

Because of this advocacy, I have had the honor to attend conferences, workshops, and seminars, and to be a voice for CML and its' community.

Because of all of you, I just keep on keeping on, and pray that I can be instrumental in saving a life or making someone's day just a tiny bit brighter.

Thrive, Leukemia Warriors; we've got this!

Ironically, just as I was about to post this blog, WEGO Health Awards started their nominations for Patient Advocates. If I have helped you in any way, great or small, I would SO appreciate a nomination from you.

This nomination will help to bring awareness to chronic myelogenous leukemia, its' victims and our struggles and triumphs.

Thanks for your support!!
Click here to nominate:

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Friday, May 24, 2019

Two Cindy's; What Are the Odds?

Patti, Cindy and me!
Throughout my life, I have been blessed with friendships that no matter how near or far in distance we physically are; they thrive. In the past, I might not have spoken to these girls for months or even years, and then sometimes it was only when there was bad news.

But other times, we wrote letters, shared photos and even made special trips, just to reconnect. Life wasn't always as easy as it is now, to connect; it took effort and money. Long distance calling was expensive and letter writing took time! lol

During the past forty years, I have shared my life with two of these women on a fairly regular basis, and even more so during the past twenty years. Patti lives in Wisconsin and Cindy lives in Colorado. I am sure that Patti feels as though she knows Cindy, and Cindy feels as though she knows Patti, as they have a common denominator; me!

Oddly enough, Patti also had a Cindy. We always laughed about the fact that we each had our very own Cindy!

Last September, for Patti's 60th birthday, I had the pleasure of finally meeting Patti's Cindy! Of course, I already felt as though I "knew" her, and of course, we were already facebook friends; but finally meeting face to face, we were able to exchange real hugs, at last.

We just loved sharing Patti stories and marveled at just how much we really already knew about each other. It was a precious time and one that I will always cherish, and be grateful for.

What I knew then, was that she and I were both survivors; she had survived two liver transplants, and I was living with cancer. She looked great and was feeling well, as a matter of fact, I could not keep up with Cindy and Patti, and I was always lagging behind!

Cindy was so cute, she kept walking back and asking if I was alright! I will never forget that kindness and understanding.

Little did I know, that was the first and last time that I would ever spend time with Cindy. Through unforeseen complications, Cindy's health began to deteriorate; rapidly. Yesterday, she gained her wings. I believe that I am still in shock, I just cannot believe that she is gone.

Oh, how she wished me Happy 60th and so prayed that she would also make it to her 60th birthday next month; she did not, and I am just so sad.

To add insult to injury, my Cindy is currently undergoing treatment for Stage 3 cancer. Another shot to the heart; I mean what are the odds?

She is through her first week of treatment, with four more weeks to go. I remain optimistic and am just viewing this as a bump in the road. I know that we will be traipsing all over Europe again, someday soon.

me and my Cindy

Life is certainly an ever-changing force. Something that we should never take for granted, as we never know what is lurking right around the corner.

Make time for what is truly important; you may not ever get a second chance.

Fly high,  Patti's Cindy; you will be remembered and missed.

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Tuesday, May 21, 2019

Should I See A CML Specialist or Not?

During the past few weeks, I have been contacted by people either newly diagnosed with CML, or people receiving concerning information regarding their response to their current treatment regiment.

My response, every single time, has been to seek the advice of a CML Specialist for a second opinion. Why one might ask, do I feel so strongly about seeing an actual specialist for treatment? Well, the simplest reasons that I can give is that a CML specialist not only stays current with the ever-evolving treatment of CML, they also see other CML patients.

By seeing other CML patients, they have a wealth of information and experience, from which to draw. They have gathered this information by seeing many different responses, in many different patients, to not only cancer but its' treatment, as well.

Chronic Myelogenous Leukemia is more often than not, a lifelong blood cancer. During this journey, it is not unusual to experience ups and downs; of cancer, and its' treatment. By seeing a specialist in this field, you are giving yourself, in my opinion, the best possible shot of controlling your cancer; long-term.

Do NOT wait until it is too late!
Specialists are more likely to recognize unusual, or concerning patterns and trends in your response to your current treatment (as they have been exposed to more patients, with the same disease) than someone who has only seen one or two CML Patients throughout their career. This experience and knowledge alerts your oncologist to red flags and allows you the opportunity to adjust your treatment plan quickly before the situation becomes dire.

CML often cruises along without any complications, but when and if a complication arises, don't you want the most experienced person in your corner? Don't you want the changes to be recognized quickly? Don't you want someone that has seen what you are going through before? Don't you want someone that has tried many different options and seen their outcomes as a basis on how they should treat you? Or do you want to be the guinea pig? Do you want to risk your disease progressing to an accelerated phase, or even blast crisis before seeing a specialist?

I know, for a fact, that I do not.

I know that I want someone experienced in my disease, in my corner, right from the start. Someone that "knows" me and my medical history.

I want someone that says to themselves, "I have seen this before." I want someone that has a wealth of information from which to draw and I want someone to recognize the early signs of complications. I do not want someone that is guessing, or reading "typical treatment protocol." I want someone that treats CML on a regular basis, not just when I walk through the door.

During the past eight years, we have lost many CML patients in our community. I truly believe that most of the deaths occurred because of improper treatment and the failure to recognize the warning signs that these patients were starting to experience, before entering a dangerous phase of their disease. By the time these people realized that they really needed a CML specialist, it was often too late.

I believe that having established a relationship with a person that is the top in their field is a very wise choice. I also know that I want to be around, for a very long time, and I believe that seeing a specialist is my very best option for doing so.

Love yourself enough to see a specialist!
I know that logistically this is not always the easiest thing to do. I live in Boise, Idaho and my oncologist is in Los Angeles, so I know all about the inconveniences. I most often see my oncologist three to four times a year, and when I am unable to physically "see" him, I am able to have my blood drawn here at home, and then sent to the lab for testing. Modern technology and ease of communication are great for long distant "relationships"!

I also know the importance of having a great medical team right here in Boise to deal with side effects and emergencies. I feel prepared to tackle any complications that may arise.

This is your life; don't you deserve the very best care available?

If you are not seeing a CML specialist, please consider at the very least, a one-time consultation. Many specialists will agree to work with your local oncologist, and by establishing a relationship with a specialist, they will be on board, should any complication arise.

You are worth it!

My best to all of you CML Warriors!

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Thursday, May 9, 2019

Reflections on a Wanderlust Spirit!

Turning your hopes and dreams into reality can sometimes be challenging and even risky. My entire life I have lived with a wanderlust spirit. I have a strong desire to experience and witness the vast diversities that exist upon our planet. I feel that exposing myself to different lands and cultures enlightens me, and gives me a broader, more sensitive view of the world, in which I live.

Living with chronic cancer makes this wanderlust spirit a bit more difficult to fulfill, as making plans, travelling and being far from home and medical care is a little scary, but I have reached a state of mind that what will be, will be: Que sera sera.

I refuse to allow the "what ifs" to come into play when planning a trip and bank on the "well if it happens" then I will deal, to prevail. I will face whatever comes along, and not worry about whether or not something will go wrong. (because it almost always does!)

My greatest fear of becoming ill, while in a foreign country did occur while we were in Bucharest. I got slammed with a chest cold, fast and hard. I considered cutting our trip short and flying home, fearful that that virus could turn into something much worse than a cold.

The sights of the world leave me speechless!
After emailing my oncologist, and his encouraging words of, "I believe that you should be able to weather that virus." I stuck it out, rested, treated the symptoms and overcame my worst fear. I must admit, I was a little scared, but in the end, I was so darn proud of my body!
The worst had happened and I had survived!

Often, we allow fear to dictate our lives, which can prevent us from living them. I am hoping that conquering my greatest fear will allow me to continue to follow my wanderlust spirit on many more adventures.

That being said, I also must allow myself the time to rest and recuperate and to listen to this tired old body! lol After returning from our six-week trek through Europe, I attended our monthly dance, taught Country 2 Step and danced way too many dances!

I have been down and out ever since with nerve pain in my feet and a flare of skin and bone pain. Apparently, sometimes you have to pay, to play! And that is alright, too!

There is always light at the end of the tunnel!
For those of you that are newly diagnosed with chronic myelogenous leukemia, or any other chronic disease, allow yourself time to adjust to your disease and your treatment; I am eight years into this journey, and looking back, the first two to three years were rough.

I still managed to live my life, enjoy adventures with my friends and family, but I had more downtime. My body needed more time to rally between my excursions, and that is alright. Know that if you wait to feel "great" to enjoy your life, you may never enjoy anything again.

But also know that when you push yourself to do something that you do enjoy, your mental state will feel "great" which in turn, will help your physical self to heal. Finding joy makes the hurt a little less painful, and a little easier to endure.

Living and loving life

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Thursday, May 2, 2019

Today I Am Sixty: 6-0!

On a bridge in Prague!!
Sixty! Wow! When I was diagnosed with chronic myelogenous leukemia at age 52, I prayed that I would live, to see 60, and here I am! I still have leukemia, but I've currently got that little sucker under control, and hope it continues to stay that way for a very long time.

I remember turning forty; I was devastated: I felt over the hill, and OLD! Boy, was I delusional? So much has happened during the past twenty years, that looking back, it is difficult to understand why forty pushed me to the brink.

Some of my greatest adventures and accomplishments happened during the decades between my forties and sixties, and looking back, I marvel at how differently I view life now, from how I viewed it then.

I am not sure whether it is turning sixty, or the fact that I am sixty living with chronic cancer, or a combination of the two, but I look at every single day as an adventure and a blessing. I am grateful to be alive to participate in this thing we call life.

I have literally been giddy since my birthday! I just keep laughing and saying, "I am SIXTY!!!" Sixty years old and loving every single second.

yes! entertaining myself in Paris! There were millions of me!

How lucky I am to have reached this milestone; six decades of ups and downs, good days and bad, happiness and deep sadness and loss. All of these emotions that culminate into a lifetime of memories and experiences that make me who I am today.

I am grateful to still be alive and I look forward to the rest of my life, however long that may be. I am up for the challenges, the struggles and the triumphs and I am so grateful to each and every single person that touches my world. It doesn't matter if you are near or far, your presence is always felt, and appreciated.

I love my life, my husband, my children, my grandchildren and I love my village of dear, dear friends!

Thank you for sharing my world and making my life so extraordinary.

I am SIXTY!  hahahahahah

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Friday, April 26, 2019

Home Again, Home Again!

Jiggety, Jig!! It was a long haul from Paris, to New York, New York to home. The first leg was eight hours, or should I say four movies? The second leg was three movies and then we were home.

We spent the night in New York because it is much less taxing on my body than flying straight through. Even breaking up the trip is difficult. I do not know why flying kicks my butt so hard, but ever since I was diagnosed with leukemia, it just does.

We arrived home at 10 pm and our wonderful neighbor picked us up and even stopped at the grocery store so we could get a few essentials.

Driving up the mountain towards home always makes me smile, and once we arrived home, and I got out of the car, I just could scarcely believe that night sky; dazzling with billions of stars. The air was crisp and the mountains smelled like home.

I am such a dork that I grabbed the flashlight and headed out into the yard, I wanted to see the daffodils, tulips, and asparagus!! I ran around the house, inside and out, just like a little kid on Christmas. There truly is no place like home, right?

Today I am still smiling, from the memories of the past six weeks, and the joy of being back home. I feel so blessed to have lived my dream and appreciate the spark of life that it ignited.

Living with chronic cancer has its' challenges; it can be depressing, wearing and downright annoying, but it does not mean I cannot continue to fulfill my dreams. I fight this disease every day, so that I can go on living, and enjoying this wonderful, fantastic thing we call life.

Follow your heart, chase your dreams and never lose your sense of wonder!

Thanks to so many who encouraged, supported and followed me through this priceless adventure.

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Tuesday, April 23, 2019

Paris, France: Day Three

Welp, looks like I just had too much fun yesterday! Did not leave the room until 5 pm. We had plans to go to the Rodin Museum, but once I realized that it is closed on Mondays, that was that. No motivation and no energy at all. I am thinking all of this fun has caught up to me, BIG TIME!

Once we left the room, I was happy but sad to discover that our hotel offered complimentary cappuccino, 24/7. Happy I found it today, sad I didn't realize it before now. It was the best cappuccino I have had on this trip.

After slamming two of those down, we headed to the raunchier side of town and walked down to Moulin Rouge. Along the way, we stopped in a chocolate shop which had the most amazing chocolate sculptures of Notre Dame and the Arc de Triumph. They were impeccably recreated in chocolate, every little window, door, and sculpture; truly a work of art.

It was actually nice to stroll through the streets today, as there were not nearly as many people as there have been during the past two days. Walking along the tree-lined street, toward Moulin Rouge was also interesting with all sorts of advertisements from sex shops to table dances to Indian food.

Made from chocolate!

I am sorry we didn't have time to squeeze in a show or see the large windmill at night, but it was still fun to see the landmark that I have seen so many times before in movies and TV shows. I don't know what it is about actually seeing landmarks in person, but it is just so very cool!

have seen quite a few of these upside-down police cars in the city

Moulin Rouge!

It didn't take long before we turned around and headed back toward our hotel, and I was certain that I needed to have a ham and cheese baguette for dinner, as I had yet to have one of my most favorite things in Paris. Once again, I do not know why something so simple is so delicious!

I am leaving France with only one regret, and that is that I was unable to eat all of the things that I wanted to eat while I was here! Too many things with not enough room in my gut; total sadness.....

All in all, we managed to get out and about for about two hours, and I was done. Just too pooped to do anything except pack and hit the bed.

Tomorrow we will be flying to New York where we will spend the night before traveling home to Boise.

It has been an incredible trip with memories to last a lifetime. I encourage each and every one of you to follow your heart and to make your dreams come true.

Where there is a will, there is a way. Thank you for following me on this fabulous journey, and I look forward to hearing about the fulfillment of your dreams.

Bonne Nuit (goodnight)

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Monday, April 22, 2019

Paris, France: Day Two

The breakfast fairy made his return with quiche Lorraine, almond croissants (my favorite) and plain mini croissants! I LOVE FRANCE! I don't know what it is, but best pastries EVER!

Somehow we managed to get out the door by 1:00pm, which may be a record. I guess maybe I was excited, after all, it is Easter, and I am in Paris! We shall see how long I last.

We weren't entirely sure what the day would bring, but we knew we had to see the Eiffel Tower which meant a Metro ride. On our way through the throngs of tourists to the Metro, we stopped momentarily at what I thought was a man doing a magic trick but was actually swindling people out of money.

He had three cups and one ball and he would swirl them around and someone would pick a cup and it would be empty. Of course, they were "betting" they were right, and I am talking like betting 50 euro!!!! And then he would swirl the other two cups and goad a tourist into picking one of the remaining two cups.; with the "crowd" chanting "Bravo, Bravo!" 50/50 chance, right?


I saw him literally swindle 100 euro out of this poor guy; it sucked and I was so pissed! One hundred euro! I was just shocked and we saw it over and over and over. The guy always had two women who would "win" every now and then, but I am sure they were plants and they all shared the money at the end of the day. This was something I have not seen in all of my travels, thus far and it was shitty.
It really bothered me and I wanted to tell the unsuspecting people that it was a scam. I will be doing that tomorrow, given the opportunity.

Finally, we reached the Metro, and hopped on and then off at Arc de Triumph, which is so much larger when standing next to it, as opposed to driving past. After a few quick photos, we headed over to the Eiffel Tower, which of course is fabulous and crowded! After walking over to the Eiffel Tower, and marveling in its' splendor, we quickly realized how hot it was, and how hot it was going to get, and decided to head out to the Catacombs, as we knew it would be cool underground.

view from below

Kind of a weird thing to do on Easter, but I was quickly reminded how my body no longer tolerates the heat and the thought of being out of the sun won.

A hop, skip and a jump and we were at the Catacombs, with a line, in the sun, around the building. I just followed it all of the way to the front, to see whether or not they had a handicap line, as I knew there was no way that I would be able to stand out in the heat for the length of time that it would take to reach the entrance. (probably several hours)

As luck would have it, there were que monitors right at the front of the line. I said, "Pardon, do you have a handicap entrance?" He told me to wait right there for five minutes and then he let us in. After going through security, we were granted two free passes, with the warning that I had to go down a lot of stairs, and then back up!

I assured them that I could although I was very slow! They told me that was alright, and we proceeded down the spiral staircase, and into the bowels of underground Paris. The amount of underground area is enormous, and there were tunnels everywhere; like in Budapest, although I do not believe that Budapest has more than two million skeletons stacked on top of one another the way they do here.

It truly was hard to wrap my mind around the entire experience and then trying to wrap it around the logistics of moving all of those skeletons from cemeteries to the underground tunnels.

I so appreciated the effort that some of the skeletal stackers actually tried to create a sort of monument to the dead by creating a heart and a cross out of the skulls. Most of the skulls were in lines, with the large leg bones neatly stacked with the smaller body parts such as the fingers and toes, and jaw bones and pelvises were thrown above or behind the wall of skulls and bones.



we think a cross?

It was a rather dismal experience, yet I am glad that we made the effort to pay our respects to all buried there.

Since we were in the neighborhood of the place where we stayed the last time we were in Paris, we decided to go to one of our favorite restaurants for dinner. Our first pick was closed for the holiday and wouldn't be back until the 26th, so we went to our second favorite place, an Italian restaurant; luckily they were open and we were their first customers of the evening, as it was only 7 pm! lol

Of course, the first thing they brought us was olives, which Joe loves, and I still do not like (I tried them again!) and then they brought the BREAD and BUTTER! What the heck? How can bread and butter be so damn good? I could not help myself and I ate three pieces of the baguette and I wanted to literally lick the butter packet (I didn't); I just do not understand why their bread and butter is so much better than anywhere else on the planet. And trust me, we have eaten bread and butter in MANY countries!

Ok enough!! I also had lasagna and salad, and Joe had swordfish and pasta. By the time I got to my lasagna, most of it came home with me as I was already stuffed! Everything was just as good as we remembered and we enjoyed the quiet of the neighborhood, away from the hustle and bustle.

We toyed with the idea of taking a boat ride, to see the Eiffel Tower sparkle, but by the time the Metro train got to the Eiffel Tower stop,  I was just too pooped, so we headed back to the Montmartre area and back to our hotel.

We did muster up enough energy to walk up to Sacre Coeur and watch the Eiffel Tower twinkle in the distance, which was still magical. I just love the twinkling Eiffel Tower. We also took advantage of the Sacre Coeur having no line and went in to see if the dome area of the altar was lit up or not; it was, so that was an added bonus.

The views over the city and the sunset were spectacular, and it is now time to collapse.

I hope everyone had a fabulous Easter.

May God Bless, and Goodnight.

Not sure how I feel about this quote! lol left on our bed

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Bricks for the Brave!!