Sunday, September 1, 2019

Leukemia Awareness Month:2019

It was January of 2011. I had just returned from the UCWDC World's Dance competition, and I was exhausted. I chalked up my exhaustion to the rigors of preparing for the competition and was surprised when my energy had not returned a month later.

During this time, I had an appointment with an optometrist. He discovered "blood" inside my eyeballs, and questioned whether I had high blood pressure or anemia. I assured him that I did not, and he recommended that I see a physician, and told me not to worry.

Several weeks later, during my annual visit to my gynocological oncologist, I explained my ailments (signs and symptoms); headaches, shortness of breath, night sweats, "bug bites", feeling of fullness below my rib cage on my left side, the blood inside my eyes,  bruising and the weird color of my blood.

He recommended a CT scan and a blood test; by morning, he had confirmed a diagnosis of leukemia and told me to go immediately to the ER, as he had already contacted a hematologic oncologist to meet me there.

It was forty-eight hours before the diagnosis was confirmed as chronic myelogenous leukemia. I had undergone a bone marrow biopsy, been hooked up to a machine to remove the massive amount of white cells in my bloodstream and had chemotherapy dripping into my veins.

I was a sick puppy and I was told that I must learn to live with leukemia, for the rest of my life. Fortunately, for me, CML was now a "treatable" cancer, and despite the extreme cost of the life-saving medication, I would be able to obtain treatment and learn to live with the uncertainty and side effects that come along with a diagnosis of chronic cancer.

Because of research done during the late 1990s, I am still here today to tell my story, and to continue to live my life. This great blessing has led me to become a patient advocate for CML and to join in the fundraising efforts of the Leukemia & Lymphoma Society during the month of September, which is National Blood Cancer Awareness Month.

Every October, Boise participates in the Light the Night Walk which is organized by the LLS:

"When you or someone you love hears the words "you have cancer"...It's one of the darkest moments in your life.

At Light The Night, it is our aim to bring light to the darkness of cancer through research and cures. Light The Night is a series of fundraising campaigns benefiting The Leukemia & Lymphoma Society's (LLS) funding of research to find blood cancer cures. We bring hope instead of despair by working to ensure access to treatments for all blood cancer patients. We bring communities together to celebrate those who are fighting the disease and to honor those we have lost.
We are taking steps to end cancer. WE LIGHT THE NIGHT."

So, once again, I am calling on friends and family to help me raise money to Light the Night!!

Thank you so much for your support!

Light the Night 2019 Donations

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #fundraiserforleukeia  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #leukemialymphomasociety  #cmlspecialist #lightthenight  #thrivingwithleukemia #livingwithcancer

Friday, August 2, 2019

Cancer Camp: The Good, The Bad and The Ugly!

How I feel about white-water rafting!
One might ask, "What is cancer camp?" And my reply would have been, "I do not know, but I have heard it is life-changing."

Hearing from a dear friend, how amazing Epic Experience was for her, certainly made me want to see if the experience would be just as amazing for me.

Epic Experience is a free camp for cancer survivors. It is located in the Rocky Mountains in Colorado and sounded like an adventure of a lifetime. I was grateful to be invited to attend.
I planned, I packed and I counted down the days.

There was only one hitch in my giddy-up; I had absolutely no desire to go whitewater river rafting and since there was a photo of a group whitewater rafting on their website, I was concerned. I expressed my concerns to a gal that called to check on my health, and to see if I had any questions about camp. I was reassured that it would be alright if I chose not to participate, and was told that there were plenty of other activities which I would enjoy. So, "Do Not Worry!"

Once that concern was put to rest, I was very excited to spend a week in the mountains with other cancer survivors.

I booked my air transportation (my only financial obligation) and began counting down the days to my adventure.

The week before cancer camp, I started having severe stomach and intestinal issues, which I assumed was side effects from Bosulif. They were severe enough that there were many moments that I wondered whether or not I was going to be able to make it to camp or not, but I held on to high hopes.

Fortunately, the day before I was scheduled to leave, I felt pretty darn good and I took that as a sign that I was going to be OK and I would be able to enjoy cancer camp as I had planned.
So I packed and went to bed early.

As many of you may know, I am NOT a morning person, so to get up at 5 am, in order to be in  Colorado by 11 am, was tough! I am not going to lie, I was really concerned as I rarely leave the house before noon, due to frequent bathroom trips.

Luckily, I had no issues; I think much of my body must have still been asleep, as I made it to the airport, and onto the plane with no problem. I then promptly fell asleep before take-off and slept until we landed in Denver.

It was quite easy to find the group or campers and volunteers, and I was welcomed warmly. As we were sitting around waiting for the rest of the campers to arrive, one of the volunteers asked me if I was ready to go rafting. I looked at him and said, "No, actually I am not."

He looked at the other volunteer dumbfounded, and they asked me why not. I asked them if they really wanted to know, and they said yes.

this is how my brain felt!
This is where the fun, not so fun, began. I explained to them that last year I had "floated" down the Boise River, after my raft sank, with nothing other than my backpack, which I was holding, and my body, the rocks, and the water. You can read about that here!

And, a friend of mine, who was a guide for decades, on the Colorado River leading whitewater rafting trips, was bounced from his raft and had died, and two weeks ago, my grandson's father's friends were trapped under their river raft when it flipped and nearly drowned, and then another friend found himself without his tube while floating the Boise River last week, which was kind of like the last straw for me.

That coupled with the fact that I was also recovering from rotator cuff surgery, it just was not worth the risk, for me. I am sure they had great guides and took all necessary precautions for the safety of the campers, but something just told me not to participate.

They kinda' looked at each other, and I went back to talking to the campers. I really was hoping that none of them had heard my schpeal, as my experiences have nothing to do with theirs, and I certainly did not wish to taint anyone's epic experience.

After about fifteen minutes, one of the volunteers came and asked me to walk over to the bench to talk with him, and the other volunteer. I said, "Uh oh, am I in trouble?"

We laughed and they said no, but they had some concerns. They explained that the entire Epic Experience was ALL about whitewater rafting and that there would be no way for me to "stay back at camp" as I had been told, and there was nowhere to "hang out" while the others were rafting.

And that instead of one day of rafting, like I was told, it was FOUR days of rafting with some of those days in a Kayak, alone. They confirmed that they were Class IV rapids and that the river was high and fast due to a heavy snow year.

They asked me what I had "thought" that camp was going to be, and I told them that I had been told that there was one day of rafting, and other activities, which were mentioned on their website like horseback riding, hiking, hot tubbing, campfires and sharing our lives with other cancer campers.

They said that they were horribly sorry, and they were not trying to "push" me into doing something that I was uncomfortable doing, but they said that if I were to choose to go to camp, I would be expected to be in a raft, for four of the five days.

They left me time to contemplate, and once again apologized. We were all glad that this came about BEFORE the three-hour drive to mountains. They did tell me that they would pay the difference of my airfare to go home early, asked if I wanted to spend a few days in Denver exploring, and asked if maybe I had a friend in the area. (which I DO)

My first phone call was to my husband; he was outside working and didn't answer the phone. I pretty much knew what he would say, which was "Hell, NO! ?You are NOT going to do that!" ( he also floated down the river last summer without a raft)

My second phone call was to my daughter; she didn't answer either.

My third phone call was to my very dear friend, in Denver, who is recovering from cancer treatment. I was planning to see her after camp, for a few days. (camp would have given her another week of healing before having company)

I told her the situation, and her first response was, "Come here! I will have Joe pick you up!" I knew that would be her response, but I also did not want to wear her out or be a burden in any way. I KNOW what it is like to feel like CRAP!

She also said, "You have always been very intuitive; listen to your gut. You shouldn't go." And you know what? She has known me for forty years, and she is SO right!

Just speaking with her gave me peace; she made me feel as though I wasn't just being a total wimp, and that I was doing the right thing, for ME.

I had moments of thinking that I should just "suck it up, buttercup" and go on what could be an adventure of a lifetime, but when I used my brain, and not my spirit I realized that just being out in the sun, on the river for four days would  wipe me out, and that is without the anxiety of actual whitewater rafting.

Do what is right for you.
Looking back, I wonder if my body was trying to tell me, the week before, that I should not be going on that trip. I was uncharacteristically sick, and often had the thought that I should stay home. Apparently, our subconscious is much stronger than we realize, and maybe someday I will learn to listen to it, without proof.

I pray that all of the cancer campers are having the time of their lives, and for anyone that is more adventuresome than me and has a strong desire to whitewater raft, I would recommend applying to Epic Experiences.

Sometimes being brave means listening to your own heart, even when others think you are being overly cautious, or weak.

I was disappointed but I did what was right for me.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #sideeffcets  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #cancercamp  #cmlspecialist #epicexperience  #thrivingwithleukemia #livingwithcancer

Saturday, July 27, 2019

Last Night was TOUGH!

Dang! What a night! I took my first dose of 200mg of Bosulif with a half of a tuna sandwich, a bowl of cantalope and a small glass of milk. All was "good" and "normal" until about four hours later.
The nausea began, and I promptly took three drops of CBD under my tongue, which almost always works, and waited. The nausea got worse, the stomach pains and diarrhea began.

After about an hour, I took 4mg of Zofran; it took an hour before it even began to touch the stomach pain and nausea, not to mention the diarrhea!

By now I am convinced I must have stomach cancer, or pancreatitis, or something other than typical side effects from Bosulif. That would be my hypochondria kicking in, but my logical self knows better!

Praying that I can sleep, and will be "all better" by morning.


This pain, nausea, diarrhea cycle lasted eight miserable hours. Today I feel as though I have been run over.

What the heck was that all about? Was it a side effect of Bosulif? Was it something else? I had no fever.

I hate that being in constant treatment makes all things seem worse than they probably are and I hate that I NEVER know if what I am feeling is a true medical issue or just side effects from my medication.

Of course, I am terrified to take another dose of this life-saving medication, BUT I will since I did not get my second dose down the hatch last night.

I am keeping my fingers crossed for a more "normal" type day; mild nausea, no stabbing stomach pains, and little diarrhea!

Blek! The life of chronic cancer can be SO much fun!

To add to my "pain" I am scheduled to attend Epic Experience on Sunday. Epic Experience is a cancer camp for adult cancer patients and I have so been looking forward to attending.

Now I am feeling a bit fearful to travel to Colorado, in the mountains at 8000 plus feet. I hate that cancer does that to me, and I am praying for a better tomorrow, to gain the confidence to throw caution to the wind, get on the plane and head off to an adventure of a lifetime.

Wish me luck!

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #sideeffcets  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #cancercamp  #cmlspecialist #epicexperience  #thrivingwithleukemia #livingwithcancer

Wednesday, July 24, 2019

Do You Get Discouraged if Your PCR is NOT Zero?

I have been battling CML since February 2011. During this time, my PCR has jumped around quite a bit, even testing twice as undetectable. The coveted "undetectable" results were likely just a fluke or lab error, as they were not consecutive, nor consistent.

Despite the fact that my undetected state did not last long, I will never forget that elated feeling of holding the golden egg! Me, my body and my TKI, Sprycel at the time, had done it! We had beat CML into submission and conquered the BCR/ABL gene.

Of course, that feeling only lasted for three months; until the next PCR test once again detected the burden of disease in my body. Boo-hiss; I tried not to allow this news to depress me and to face my reality.

Eventually, I realized that my new "goal" had changed and was no longer to become "undetectable", but to achieve MMR, also known as a Major Molecular Response This meant that my PCR result would have to be below .1%. This took quite a few years before I actually "stabilized" below the desired .1%, but I am pleased to say that even though my PCR results tend to bounce around, they have remained below the .1% mark,  for years now, and that was OK by me.

It seemed as though I had stabilized at a medium range of around .06%. This degree of disease in my body is an "acceptable, and tolerable" amount of disease allowing me to live a full lifespan; whatever that may be. My oncologist and I had finally agreed that we would accept the stability, and be grateful for the strides that I have made. Not everyone reaches an undetectable state; stability is often much more important.

I was relieved to finally have made peace with the acceptance of MMR, and felt good about taking the elusive undetected goal off of my plate.

Fast Forward:

Wouldn't it just figure, that once I became comfortable with my decision,  my very next PCR dropped! Just to taunt me, the PCR results came back at .025%; I am not going to lie.....I was super excited, super stunned,  and could not stop doing the happy dance: I also wondered whether this was a fluke or a new trend.

Could Bosulif really get me there? Was this my new wonder drug? IS undetectable a new obtainable goal for me?

And here we go again!

Because of the latest test results, my next doctor appointment conversation was a bit different than the last one; it revolved more around the new possibility of once again reaching an undetectable state. And wouldn't it just figure! Just when I am ready to accept my truth, my truth changes, proving that nothing is black and white. Life is full of ups and downs and twists and turns, so I will just enjoy the ride!

It reminds me that Nothing is set in stone, and remaining adaptable is what truly is, most important.
Fast forward another six weeks; a new pcr was drawn to check for the BCR/ABL1 gene and here are my newest results:

DIAGNOSIS: International Scale Quantitative Reverse Transcriptase PCR for BCR-ABL1 Fusion
RESULT: Positive for BCR-ABL1 fusion.
Major Breakpoint Cluster Region (M-BCR/ABL1) IS%: 0.017%

Point. Zero. One Seven??? Really? I am amazed, shocked, and thrilled! It appears that Bosulif and I are frenemies! It is kicking cancers ass while wreaking havoc on my stomach and intestines!

The nausea and diarrhea are much, much improved, but there are still days! But NOW, those days have a bit more meaning and my brain is a bit more accepting of those side effects, knowing that great results are being achieved. I might just reach the ultimate goal yet!

CML certainly is a tricky little sucker!

I guess that the whole point to this "story" is that not everyone will reach an "undetectable" state and to assume that everyone will, is a bit unrealistic. So if you are new to this game, and you are not one of the lucky ones that seamlessly reach an undetectable state; do not fret.

It does not mean that you will not live a long and productive life. Undetectable is the perfect scenario, but that does not mean it is the ONLY scenario. Do not let an undetectable result for someone else ruin your day.

Instead, look for stability in your own results; no matter what your levels are. We are all different and stability in this disease is very important. Remember that this is a marathon, not a sprint, and remember that not everyone becomes undetectable, and this is OK!

BUT, also remember that things can change, and never give up hope. I am eight-plus years into this journey, and it truly is the first time that "undetectable" may be within my grasp. However, if that does not happen, that is OK, too.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #PCR #bcrabl #hopesanddreams  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer #nevergiveup

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.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #hopesanddreams  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer

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:

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #loss  #leukemia  #lovemylife  #cml #patient advocate #death  #canceradvocate  #selfadvocacy  #thrivingwithleukemia #livingwithcancer #faith

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.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #loss  #leukemia  #lovemylife  #cml #travellingwithcancer #death  #gratitude  #grateful #lovemylife  #thrivingwithleukemia #livingwithcancer #faith

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!

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #hopesanddreams  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer

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

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #hopesanddreams  #gratitude  #grateful #neverloseyoursenseofwonder
#lovemylife  #thrivingwithleukemia #livingwithcancer #wanderlust #wanderlustspirit

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

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #europe #travelingwithleukemia #hopesanddreams  #gratitude  #grateful  #thereisnoplacelikehome #neverloseyoursenseofwonder
#lovemylife #turningsixty #thrivingwithcancer #lovemyvillage

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.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #europe #travelingwithleukemia #hopesanddreams  #gratitude  #grateful  #thereisnoplacelikehome #neverloseyoursenseofwonder

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)

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #europe #travelingwithleukemia #hopesanddreams  #gratitude  #grateful  #sacre coeur #airbnb #france #feelingbetter #paris #moulinrouge

Bricks for the Brave!!