Tuesday, August 4, 2015

CML Can Be Scary: Don't Stop Believing!

Being diagnosed with  chronic mylogenous leukemia is no walk in the park. It is easier for some than others, and somewhere along all of our journey's, we are going to run across some one whose battle has become more critical than our own.

When this happens it is scary, not only for the person in crisis, but for all of us, as well. Those of us with CML want to know how, why and will it happen to us? I believe that it is human nature to feel compassion and fear, all at the same time.

Our hearts break for the one in crisis and shudder with fear wondering if we are next. I believe that this is "normal"; this is a bold reminder that CML is a very serious form of cancer, not to be taken lightly.

Do not feel guilty for questioning our disease in times like these, but do not allow your fears to weigh negatively upon the person in crises; the woulda', shoulda', coulda' is totally irrelevant and pointless.

What we can do is show as much support and positive-ity to our fellow CML'er, and their family as we can. We can pray like hell and ask for God to be with them, and their family through this difficult journey, and to restore this person's body back to a healthy state.

We can cry and lean on each other, stomp our feet and swear; if you are feeling scared or worried, know that you are not alone. It is "to be expected", it is "ok", it is "normal"; CML can be scary.

What we can do is continue to learn about our disease, and ensure that we are receiving the best care possible. We can follow our oncologist's advice, while listening to our own bodies' and we can live our lives' with as much joy and happiness possible.

We can continue to share our journey, our love and our support and do the best that we can through each and every day. Never give up hope and never stop believing.

Blessings to all.

Tuesday, May 12, 2015

Beat the Summertime Heat!

I used to love summer, but CML (chronic mylogenous leukemia) has changed that. Now summertime means more days of feeling crappy! It seems that either CML, or the treatment for CML, makes the heat intolerable.

I still love gardening and the great outdoors, spending time at the local watering hole and enjoying outdoor activities with our grandchildren, but this can cause exhaustion and flu-like symptoms with minimal exposure to the heat.

Even getting into a hot car can cause a headache and nausea for me, and dancing in the summertime is always a challenge!

My number one line of defense in the summer, is to stay hydrated by drinking lots of water (sports drinks may be a good idea, too)and my number two, and favorite line of defense is my chilly pad, also known as "Nana's Rag"!

I do not go anywhere without my chilly pad; it is my constant summertime friend. I actually have several of them so that I can rotate them to avoid stinkiness; one for the garden, kinda' dirty, one for dancing, and one for "going out on the town", this year I think that I am, going to try the ball cap, too, and see if keeping my head cooler will help with the summertime blues!

It is not often that I endorse products of any kind, but I promise that you will be amazed at just how cool these clothes are, and how much they can help you beat the heat.

Keep in mind these signs of heat stroke during this time of year:

The major signs and symptoms of heat stroke include:

               1. Nausea
               2. Vomiting
                3. Fatigue
                4. Weakness
                5. Headache
                6.  Muscle Cramps
                7. Dizziness

Let us all have a great summer whether you are sheering sheep, planting and harvesting your garden, dancing, fishing, bike riding or rock climbing, please try to stay cool, and healthy!



Sunday, May 3, 2015

Time to Ride the Silver Hair Train

A little over four years ago I was diagnosed with chronic mylogenous leukemia. I had no idea what that meant, but I did know that cancer is never a good thing. While I had a million questions and scenarios whirling around in my head, the most prevalent question running through my mind was, "Am I going to die?"

Well, we are ALL going to die "some day," so my next questions was "What do I need to do to live?" The answer to that question was that I would likely have to remain on a daily dose, of  a specific type of chemotherapy, for the rest of my life.  I can do that!

Simple enough, right? What I did not realize at the time,  was just how taxing a potent medication can be on your body. My life saving drug wreaks havoc, in many ways, and today I am going to discuss one of them.

This particular side effect of Dasatinib, otherwise known as Sprycel, is not life threatening, but can be life altering. It is a side effect that strips the color, not only out of my body; which is apparent through my pasty white skin, but out of my hair, too!

Yup, my whole head of hair is now void of any color! I am not sure whether it is white, silver, or some strange combination of the two, but after speaking with my oncologist and my husband, not to mention my internal conflicting thoughts, I have decided to let it grown out and show its' true colors!

This is going to be a process that is easier said than done. Every single morning I wake up and look into the mirror; and what I see is a bit frightening, yet a bit fascinating, too. I have always admired men and women that rock their gorgeous white/silver/grey hair and always wondered if I would ever be able to do the same.

Be careful what you wish for, right? I now have my chance; I have made my decision and I am just going to go for it! No blending, no dying, no more harmful chemicals on my head. I am not sure how long this process will take, or exactly how this is going to work, or look, but I promise to share my progress with you.

I know that many people will think that I am nuts, and I may come to that conclusion myself, some where down the line, but for now, I am rocking the Pepe' Le Pew look!

And that is all!


Bricks for the Brave!!