Thursday, October 11, 2018

When Your "Normal" Isn't "Normal!"

Most of the time I feel like I am "normal"; I do my very best to keep up with life in general. You know, things like getting up in the morning and getting dressed (even if that doesn't happen until afternoon), keeping the house in a relatively clean and tidy state, making sure there are always clean undies to put on, and food to eat at mealtime; which is typically sporadic, depending upon my nausea.

Fortunately, my husband has adjusted to what I consider and accept as "normal" and is able to go on about his "normal" day, without being resentful. For this, I am grateful and appreciative.
But the cold, hard truth of the matter is that my "normal" is sub-standard to those around me. I am slower and have less stamina than most. I do not start my day at full steam ahead, as it takes me forever to get moving, and my most productive hours are between the hours of two and six, which does not fit well into most people's everyday life.

I am also unpredictable and wishy-washy. I hate to make definitive plans because I hate cancelling plans; I just never know how I am going to feel. This is not easy for most to understand. So, I ask myself, is this really normal?

And if I am honest and kind, I will answer that it is "normal" for me; and if I am brutally honest and truthful, I will recognize that I am most certainly NOT "normal" in comparison to my peers. This is difficult to accept, deal with, and increasingly frustrating.

My limitations become so much more apparent when I am around other normal, healthy people. For example, when I am out and about with uncompromised friends, I am usually walking at least a half-block behind them; huffing and puffing, trying to keep up. I am the one who requests indoor seating at the cafe' because there is either, too much sun, or it is too hot or both. And on boat rides, I must sit indoors due to heat, sun and exhaust from the boat. All of these things are not just preferences, but necessities, if I don't want to end up miserable, sick and in bed.

"Normally" these limitations do not bother me, as I do not wish to be the anchor around anyone's neck, but every now and then, they shine a beacon on just how limited I really am. On those occasions, I can easily become melancholy, and my mind begins to wander. I begin to analyze life.

You have all heard the adage, "What Would Jesus Do?" right? Well, on those feeling sorry for myself sort of occasions, I ask myself, "What Would I Do?" How would I treat the situation? Would I treat it differently now, than I would have prior to being diagnosed with cancer? Am I more or less tolerant than I used to be? How do my limitations make others feel? How do my limitations affect others? Am I more of a burden than a pleasure? Should I simply quit accepting invitations from others who are not limited? Or should I make my limitations and expectations known? Do I apologize for my limitations?

I often find myself vacillating between trying to keep up with the "normal" people and throwing in the towel and giving in to my limitations. I suppose that the majority of the time I hover right smack dab in the middle; participating to the best of my ability. And instead of feeling sorry for myself, I enjoy my own experience, often meeting others, who are just like me!

The ones that can't keep up, the ones that are slow and steady, the ones that see things differently than those who have yet met with physical challenges, which are out of their control.

Sometimes it is lonely, and it is always frustrating, but at least for now I am still able to enjoy my life, even if it is at a snail's pace!

And for that I am grateful!

Now there is food for thought.....
#lovemylife #thrivingwithcancer #leukemia #chronicmylogenousleukemia #livingwithchronicillness

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

Bricks for the Brave!!