Saturday, September 1, 2018

Light the Night 2018

How fortunate am I?? I am still here, ready to celebrate National Blood Cancer Awareness Month for the fifth time!

I will once again begin my fundraising efforts for the Light the Night Walk in Boise, in hope to raise $3000!

Joining me this year is my dear friend Lynda Wolters, who is also battling a rare form of blood cancer. She and I met many years ago, on the dance floor! We will also be fundraising and walking for another dance friend Ron Brown. Imagine that, three dancers, with three different types of blood cancer.

As you may or may not know, I was diagnosed with a rare form of blood cancer, chronic mylogenous leukemia, on February 9, 2011. I have been "living" with cancer for seven-plus years, and keep holding out for the cure! I know that I am one of the fortunate ones, whose CML has thus far been treatable, but there are many whom I know which have not been so lucky.

I am still holding out for a cure, which I pray will come during my lifetime. I know that I do not look like a typical "cancer patient", but the toll of taking an oral type chemotherapy pill daily is slowly wreaking havoc on my body. Many have told me that I "look great", which is wonderful, but what you don't see behind the facade, isn't pretty! lol

Blood cancers are the third leading cancer killer of Americans, and Leukemia is the most common cancer in teens and children. Amazingly, there are nearly 1.35 million people in the United States that are living with or are in remission from leukemia, lymphoma or myeloma.

This is my one time a year to give back and to fundraise for the Leukemia Lymphoma Society's Light the Night Walk. Please join me in my efforts and donate to my fundraiser.

No donation is too small, or too big!! All donations are tax-deductible and very much appreciated by me, and all of those that the LLS helps, and works tirelessly for every single day.

The Leukemia & Lymphoma Society is the world's largest voluntary health agency dedicated to blood cancer, and our chapter in Boise is the BEST!!

Please, donate if you are able, and thank you for supporting me in this endeavor, as well as all of the emotional support I receive from all of my blog followers!

Click below to donate!

Light the Night 2018

FaceBook: CML: A Place for Hope and Humor

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

Thursday, August 30, 2018

Can Being TOO Strong Be a Detriment?

It has been a little over a month since my terrifying ride down the Boise River; without a raft. An adventure that I never wish to experience again. Oddly enough, this adventure seemed to only terrify me; which has led me to many hours of pondering.

Has life just become a series of Instagram photos and Facebook posts, creating a lack of actual connection to other people, or have I created such a strong persona of "I am so strong, that I do not EVER need help?"

I know that I should not compare what I would have done, or how I would have reacted to others' reaction and actions, but I just cannot stop internalizing the entire scene. I mean come on...there is an old lady being washed away down the river, and people just kept floating attempts to help, no words of hope or "help is on the way", NOTHING; no wonder people drown. What if it had been a small child or a teenager? The pure lack of urgency was astounding; I wonder what went through people's mind.

I don't know what I expected, but I guess I was holding out hope for rescue! lol

A gal that I met through my blog probably said it best;

" It's positively surreal how nobody realized how bad this was.  In the end, you rescued yourself, really, both by grabbing onto the tube handle and later by hitching a car ride.  It struck me how it parallels the whole CML shmear - we all end up having to be our own best researchers and advocates and, also, that we live in a state halfway between OK and not OK all the time.  We have a great medication that makes it probable we won't be obliterated on the rocks, and we can still stand up, but nobody really gets how banged up and depleted we are from the struggle.  It's not that they don't care, they just think we're handling it fine."

Thank you, Kathy, for your wise words of wisdom. I know that there is truth in these words, as being a wife, mother, and grandmother, I do tend to wear my "I am fine, everything is fine" mask most of the time, but after this brush with a terrifying adventure, I realize that maybe I am not always fine, and maybe I do need a life-line thrown my way, every now and again.

I know that in the large scheme of things I am ultimately responsible for my own life, health, and management of treatment, but I now have a totally different perspective of just how quickly a strong a moving river can come and sweep you off of your feet.

As a person living with a chronic cancer, I understand that I must always be aware of lurking dangers, and always be ready to fight; there is a fine line between being a burden, and knowing when to admit defeat.

I suppose that it takes being drug down a river, out of control, for me to throw up my hands and say, "Jesus Take the Wheel!"

Can being TOO strong be a detriment?

FaceBook: CML: A Place for Hope and Humor

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

Friday, August 17, 2018

Bosulif Update;Eight Months and Counting!

I know many of you have been wondering how my Bosulif journey is progressing; I am pleased to say that things are going "swimmingly"! Pun intended, considering my latest escapade: How NOT to Float the Boise River!

I have been feeling quite well, with little abdominal upsets; occasional nausea and diarrhea, but nothing like the nausea that I endured in the beginning.

As far as the pleural effusion goes, I saw the pulmonologist a few days ago, and while the pleural effusion has not completely resolved, there is some improvement since March, (which is a good thing and leaves me hopeful) but the even better news is that there is a dramatic improvement since last November.

left Nov./right Aug.
Unfortunately, I do still have approximately 1/4-1/2 liter of fluid remaining at the very bottom of my pleural sac, Boo.... and because of where the fluid actually pools, it is not advisable to have it removed through a thoracentesis, due to the risk of having the lung punctured; so I shall just have to wait and see.

On an interesting note, I do still suffer from some shortness of breath, but we are not certain whether it is the small effusion causing it, or just the Bosulif itself; apparently, you can have shortness of breath on Bosulif,  without an effusion.

That being said, I hope that the fluid continues to "move on down the road"!

I am also happy to report that my pcr remains below the coveted .1% at a .09%. Up a bit from the .06% taken in May 2018, but I have been assured by my oncologist that this is within the"error of the test" range, so I shall not worry! My high hopes continue to be that I will reach an undetectable state sometime this year, and prayerfully be able to reduce my dose.

I am still ingesting  400 mg per day of Bosulif, twice a day; 200 mg with first meal, and 200 mg with a second meal; this regimen has drastically reduced the nausea.  But on occasion, when I do find myself nauseous, I first try my peppermint and ginger oils, and then the CBD with no THC, and then as a last resort, I will take a Zofran. While the nausea issue has not completely resolved, it is much, much improved. This is a good thing!

The new side effect that is currently driving me absolutely CRAZY is the hair loss; I am shedding like an animal losing their winter coat! There is hair EVERYWHERE and I cannot even begin to keep up with the piles of hair that are hiding in every nook and cranny of the house, not to mention all of the loose hair on me and my clothing; it is literally everywhere! I pray that this stops before I don't have a hair left on my head!

All of that being said, other than the minor inconveniences, of hair loss, and occasional nausea, diarrhea, and headaches, along with some fatigue and shortness of breath, my fears of switching medication have gone by the wayside. All of this to be expected when living with chronic cancer, while taking a toxic medication;  a small price to pay, in exchange for life!

On the up-upside, along with the fluid in my lungs subsiding, the puffiness in my face has also lessened, and I have lost 6 pounds! So I bid adieu to Sprycel, with much gratitude for allowing me six years of life, and I look forward to a very long relationship with Bosulif!!

FaceBook: CML: A Place for Hope and Humor

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

Wednesday, August 8, 2018

How NOT to Float the Boise River!!

As many of you already know, our grandkiddos were visiting from Arizona, last week. As usual, our days were full of fun and laughter, and activities that are on a "must-do" list.

One of our favorite summer activities is to float the Boise River. It is a six-mile float that takes approximately two to three hours. For this float, we were a group of eleven; our grands and our daughter-in-law, and her brother and his family. We had three rafts, and one person on a paddle board.

We filled up our rafts at the fill station, made sure we had the appropriate number of life jackets and headed down the river. I must say, that every time I get on the water, I wonder why I don't do it more often, it is just so relaxing and enjoyable! HA!

After several hours of floating and chatting, enjoying watching the kids,  the baby ducks and other wildlife, we were nearing the end of our time on the water; it was then that Joe and I got hung up on the edge of the river; you see, while most of the float is just that, a float with little effort, there are a few tricky areas that actually need attention. There are rapids and undertows that sometimes require more effort to stay in the right area of the river, to avoid getting pulled towards the bank.

It seems as though this happens at least once, every time we float the river; and that day was no exception. We hit the bank, and I heard Joe's paddle snap; never a good sign, but we did manage to get turned around, and I pushed off of the bank, with my feet, thinking that all was good, once again. As we headed back out towards the center of the river, Joe said, (from behind) "We aren't going to make it! We are going to sink!"

My first thought was, "Great!" My second thought was, "I wonder how far we are from the end?"
Somehow we managed to get close to the rest of our group, and  I asked if anyone had something that we could use to "bail out", thinking that would solve our problem; but evidently, there was no magic bucket! I think that they did not believe that we really were in serious danger; but it quickly became apparent, just how much water we were taking on, and that we truly were going to sink!

The rest was a bit of a blur, but I remember my daughter-in-law's brother trying to desperately get me into their raft, but because we were so low in the water, and his raft was so high, I could not launch myself into their boat; things were getting "real", quickly!

He had no choice but to stay in his raft with the kids, and I watched our group quickly float down the river, and out of sight.

Somehow, I found myself standing in the middle of the rapids, in the middle of the river, on two rocks;  I was upriver, holding a small backpack with our car keys,  camera,  wallet, and other essentials, such as chocolate chip cookies, while Joe was down river, with the deflated raft between us.

As I am standing there, with water rushing down the river, my mind is racing; I do not know what to do. After a few moments of trying to stand up, hold onto the raft and the backpack, it becomes clear that something has got to go. I tell Joe that I cannot hang onto the raft, that the river is pulling the raft away from me, too strongly, and I cannot hang on, any longer. He says, "Well, then let it go!"

So, I did! Guess what happened?

Yup, Joe, and the raft were swept down the river, and I was left standing in the middle of the river alone! Now, what???

First things first; I turn around so that I can see what, and who is coming towards me. The rocks are slippery and unstable; I am standing in about two feet of rushing water; I do not know what to do. Looking back, I find the conversations that you have in your head quite amusing, when in a dangerous situation; I was truly alone, with only the voices in my head. They were a jumbled mess of wondering what the heck to do!

Shortly, I see rafts coming towards me. I think, GREAT! Someone will certainly "pick me up" and I can float to the end of the river with them. I will be rescued; I will be saved! I stick out my hitchhiking thumb and start saying that I need help.

Oddly enough, seeing an old lady in the middle of the river startles some, and confuses others. They start to paddle around me before they get to me, and as they are passing they say, "Are you OK? Do you need help?"

Duh! REALLY???? I answer, "No! I am NOT OK and YES! I need help!" As they pass me by....too late to help. I watch as raft, after raft float by me and I wonder what will happen? Is there a rescue team even in place for situations like this? I can't be the only person that has ended up in the river, right? Will someone report an old lady standing in the river to someone? Is there a someone that will help? Talk about feeling all alone, up a creek, without a paddle! lol

As I continue to stand in the rushing water, surrounded by rocks, the rocks that I am standing on continue to shift, further and further apart. I know that eventually, they will be too far apart to stand on. I try and re-adjust, but the rocks are so slippery, and so wobbly, that I just stay put.  At this point, I am beginning to assess my situation and options and I truly do not know what to do, I was shivering then and I am shivering now, just writing this down.

I was truly beginning to get scared and wondered just what was going to happen, just how long would I be able to stand there, and what exactly happens when standing is no longer an option? Should I try to turn around and sit down and let the water take me? Should I try to walk further downriver? Should I just continue to stand there and pray for rescue? I just did not know.

Well, it wasn't long before the universe made that decision for me. As luck would have it, coming towards me were three guys on inner tubes; they were locked together, deep in conversation and did not see me. I began to yell, "Help! Help!" and by the time they heard me, it was too late!

They ran right over me! Knocked me into the water and drug me across the rocks. I had one leg in front of me and one behind, I was being banged up and tossed over the rocks like a rag doll. I looked up long enough to see their horrified faces, further down the river and then they were gone.

At this point, I had lost all control; the river had taken over and my mind was racing. I didn't want to be the old lady on the news that drowned in Boise River, so I knew that I could not panic. The thought that kept going through my mind, over and over was, "Keep your head above water, and don't let it hit the rocks!"

I managed to get both of my feet in front of me and continued to slam into the rocks, heels first, then bottom, then elbows. I figured that as long as I kept my head above water, and did not allow it to hit the rocks, that I would survive. I knew I was going to be banged up, but I also knew that bones, muscle, and body heal. Those rocks were hard, and the force of the water was so strong, that I had no choice, but to "go with the flow!"

I quickly realized that this is how people die when they find themselves in rushing water; it is bad enough that the water is quickly carrying you downstream, but the most dangerous part is all of the rocks and debris that it slams you over.

I tried my very best to remain calm and kept repeating to myself, that I was aware of the danger, and that I could float, and that eventually, I would get to a calmer part of the river, and hopefully maybe even make it to the end. Most importantly, I remembered not to panic!

I was also hoping and praying that someone had reported a crazy lady in trouble and that someone would come to my rescue. I guess you could say that I was praying for a miracle and my life.

Eventually, help did arrive, not intended help, but help just the same; I am not exactly sure how it all happened, but I saw a tube within reach and I grabbed the handle. It was a man and his son, hooked together, on inner tubes. I had grabbed the man's tube, and said, "Oh, my God! Can you help save me? Our raft sunk and I don't know what to do!"

He told me, "Don't worry, we've got you now. Can you get your leg up on our raft?" Hahahaha! That would be a big fat NO! I told him that every muscle felt like jelly, and could I just hang on?

He told me to keep my legs up, as best as I could, and we hit more rocks; at this point, I think I was a bit numb and didn't feel pain, just me actually hitting the rocks. I did manage to hoist myself halfway up on to his inner tube, where I thanked him profusely. I told him what happened, and he told me not to worry, and assured me that everything was going to be OK, that they would get me to safety.

Shortly, he said, "Is that your husband on the bank?" I looked around and there were Joe and Joey: out of the water. Apparently, somehow Joe had managed to get to the side, and Joey, (my daughter-in-law's brother) had managed to stop his raft, a bit downriver, and had come back to look for us.

I said, "Yes" so he took us over to the side of the river, and "dropped" me off! Yay, for dry land, but not yay for the bank of rocks that I had to climb over to get there. They were loose and my body was like a shaking bowl of jelly. I could barely think, and was so relieved that I was alive, that everything seemed to move in slow motion.

At some point, I realized that I still had the small backpack and handed it to Joe, so that I could climb up the bank of rocks. It was then that I remember thinking that it was going to be the first thing that I let go of, in case of an emergency! haha Like being washed downriver wasn't an emergency! Shockingly, I still had the backpack, my sunglasses, and even my hat!

Once I reached the green belt, that runs along the Boise River, I don't remember much; I remember thinking that we still needed to get to the takeout area of the river to rejoin our group. I also remember wondering how far that was, Joe was already headed in that direction, so I just followed along; apparently I was "complaining"  and I remember Joe saying that it was beyond a fence that we could see, and that as slowly as I was walking, it would take a week to get there, so I said, "Well then maybe you should just go on without me!"

To my surprise, that is just what he did!

So here I am hobbling down the greenbelt, alone; the first thing that I realize is how great adrenaline actually is, and how horrible it is when it starts to return to normal. I looked down and saw that my feet were pretty banged up, and noticed that every single step was starting to hurt more and more. All I could think of was "Bueller, Bueller..." (think "Ferris Bueller" principal walking down the road, after being beat up)

Eventually, I managed to stop a bicyclist, and asked them just how far it was to Ann Morrison Park, where they took the rafts out; she told me that it was at LEAST one mile. One MILE???  I knew that there was no way that I was going to be able to walk that far, on my feet, as they were hurting more and more with each step.

I once again, I went into that "What am I going to do mode?" I was barely hobbling along at this point, and as I was contemplating my options, I saw Boise State University just up ahead; I thought that if I could make it there, that a bright light would come on, and tell me what to do. I wondered if I just sat there and waited, that eventually, my group would be able to find me; or not?

Once I reached the parking lot, I saw a young man, thankfully, standing near his car. I began to hobble towards him, as fast as I could go. I said hello, and asked whether or not he would be interested in helping an old lady who was in desperate need.

I told him that I needed to reunite with my family at Ann Morrison Park, that my raft had sunk, and I was stranded: he asked if I wanted to call them, and I quickly realized that I did not know my daughter-in-law's phone number and that our cell phone was likely in the car, at the top of the river. So much for modern conveniences, right? lol

He told me to hop in his car, and that he would take me there, his name was Andrew, and he was my second angel of the day. He drove me to the park, where I reunited with the rest of my family. I could not thank him enough, I was so appreciative! I do not know what I would have done without him!
I think I was in a bit of shock, of the whole situation and was amused at how everyone just went on about their business, in a matter of fact sort of way! Thankfully, my daughter-in-law listened to my tale of woe, which helped me to regain my senses. We laughed about the craziness of the situation, as I was still shaking inside.

Looking back, I am grateful to be alive, and I realize just how important it is to keep your wits about you in a dangerous situation. And when being washed downstream, be sure to keep your head above water and don't let it smack any rocks, don't fight the current and do not panic. Point your legs downstream and hang on for the ride!

Also, be grateful for your angels; they often show up when you least expect them and more often than not, they are complete strangers.

Never forget how quickly life can change; one moment you may be floating peacefully downriver, and the next you may be in for a fight for your life. Live each moment with gratitude and be ready to jump in with both feet, at all times.

I thank God for keeping me safe and allowing me to be here to share this adventure. Life is quite a ride!

On a side note, other than being extremely bruised and banged up, I am OK. I had to crawl around on my sore knees for a few days because my heels were so badly injured, but the best news of all is that my surgeon, who repaired my rotator cuff nine months ago, did an AWESOME job!!! My shoulder is 100% intact!

FaceBook: CML: A Place for Hope and Humor

#lovemylife #cancerthriver #livingwithcancer #chronicillness

Thursday, June 14, 2018

Bosulif Update: The New Wonder Drug!

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

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

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

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

I began using CBD oil (no THC) 300 mg, and sucking on Preggie Pops, along with the Zofran; this seemed to help tremendously. That, coupled with the fact that my PCR dropped to .06, and I was beginning to be a happy camper, once again!

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

Hallelujah, Amen!!

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

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

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

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

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

Be Brave, Be Fierce and Be Grateful!

Blessings to all of you Warriors!

FaceBook: CML: A Place for Hope and Humor

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

Saturday, June 9, 2018

Without Clinical Trials:I Would Be Dead!

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

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

My first response is, "What?"

My second response is, "Now what?"

And so the journey begins.

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

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

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

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

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

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

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

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

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

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

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

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

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

FaceBook: CML: A Place for Hope and Humor

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

Wednesday, June 6, 2018

Even in Pain, You Can "Play"

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

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

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

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

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

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

Sunday, June 3, 2018

Cipro; The "Gift" That Keeps on Giving

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Related Links:

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Instagram: CMLMichele

Thursday, May 31, 2018

Why Do I Blog?

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

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

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

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

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

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

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

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

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

It just happened! 

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

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

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

You all keep me, keepin' on!

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

Sunday, May 27, 2018

When You Play, Sometimes You Pay!!

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

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

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

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

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

Thank God for an understanding husband!

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

FaceBook:   CML: A Place for Hope and Humor

Instagram:  cmlmichele

#chronicmylogenousleukemia #chronicillness #thrivingwithcancer #cml

Monday, May 21, 2018

"Have You Ever Seen?"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Change Can Be Scary!!

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, May 7, 2018

Blooming: Despite Leukemia

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

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

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

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

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

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

                              10 Things That May Help You Bloom!

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

Do you have something special that helps you to bloom?

Saturday, May 5, 2018

Shhhh...Cancer is Sleeping

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

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

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

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

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

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

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

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

Thursday, May 3, 2018

Do You Wear a Mask?

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

You name it, it was represented!

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

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

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

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

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

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

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

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

                                     Why Do People Wear Masks?

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

Do you wear a mask?

What does your mask hide?

Follow me on Instagram @CMLMichele

Wednesday, May 2, 2018

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

Today is my birthday; I am 59 years old!

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

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

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

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

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

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

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

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

Happy Birthday to ME!!!

Tuesday, May 1, 2018

Do You Have A Leukemia Inspired Tattoo?

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

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

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

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

Wishing you a Happy Day!

Monday, April 23, 2018

Bosulif Update, PCR Results, Nausea and Magic Oil

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

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

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

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

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

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

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

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

Here's to riding the Bosulif train!

Bricks for the Brave!!