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

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#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?

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#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

Bricks for the Brave!!