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!


Thursday, April 16, 2015

My Gratitude: Silent But Listening

It has been many months since I have written any thing; other than my mother's obituary. During this time, much has transpired. So much in fact,  that I have nearly been rendered speechless.

I waffle between having nothing to say and having so much to say that I am fearful of becoming either a total recluse, or a completely opened up, fire hose. I am not sure which is worse!

Throughout this entire period of time, what I found most heart warming was despite my absence, the love and support that I felt from friends and family was what got me through each and every day. It also became very apparent that the amount of love and support came in many different ways, from many different areas of my life.

"Friends" become friends in many ways; some we are lucky enough to grow up with, others' we meet along the way. Some we have never even met face to face, yet they are there, cheering us on. These special friends, that we have never met face to face,  are often people that share a special bond; for me, that bond is CML, also known as chronic myelogenous leukemia.

Another group of friends come from sharing a passion; My number one passion is my family, but my second passion is dance. My extended dance family has been a huge support, always there to share my laughter and my tears. This is my happy place, my place that transports me from grief to joy and I am so blessed to have found such a great, creative outlet, with so many wonderful people!

And of course, the love and support from family is nothing short of miraculous; even from long distances their presence can be felt; I don't know how many times just hearing the breath of a loved one, through the phone, gave me strength.

I also thank God for all  my children; they were able to be with my mother, when I was not. They are strong, caring and wise individuals and I am not only eternally grateful to them, but so very, very proud of them, too.

And then there is my husband; the man that supported, helped and stood by my side through-out the entire three and half month ordeal. He encouraged, allowed and helped me care for my mother during the last six weeks of her life. He also jumped on board the monumental task of preparing my mother's home to be sold. This was all done in stride despite the fact that we both wished to be home. Once again, I am extremely grateful.

I am also grateful that so many understood my utter and complete silence, yet contined to send their loving support. I was so fragile during this time that even the kindest of words, with the best intentions, a touch, a hug or a glance held the possibility of sending me over the edge.

I understand now, how important reaching out to someone in a difficult situation can be, and that just because you do not hear from them, does not mean that they did not hear you. I also understand that just knowing that people care, gives you strength.

I want to thank each and every single person that sent their love, support and concern to me during this time and let you know just how much your words, cards and encouragement meant to me.

I may have been "silent", but I was listening; and I am grateful and blessed.

Wednesday, December 31, 2014

Good Bye My Dear Friend, Karen; Another One Gone Too Soon

For the better part of my life, my “friends” were people that I met within the vicinity of where I lived. They were people that I met through common interests; people that I saw at the grocery store, the mailbox, the park or even at the doctor’s office. Today, much of that has changed; because of the internet, I have made friends with common interests, all around the world.

As luck would have it, some of my dearest friends have been become so, by sharing a very rare cancer; chronic myelogenous leukemia. For those of us that have found each other in various groups, this blood cancer doesn't seem all that rare, because all of us have it. Truth be told, there are only approximately 75,000 people in the United States, living with CML; when you compare that to the approximate population in the US of 313.9 million people, we really are a drop in the bucket.

This being said, it is not uncommon for those of us in CML “groups” to experience the death of a friend. The past few months have been particularly brutal in that department; we all have lost quite a few blood buddies. Right now, my heartbreak is from the loss of Karen Hurst Knoxx.  I “met” Karen several years ago,and was immediately drawn to her complete and utter sweetness. This coupled with shared interests brought us closer together as the days passed. I will now forever cherish the recipe card for Jambalaya, that she recently sent to me. I cannot believe that she is gone....

Unfortunately, Karen's CML journey has not been an easy one, and recently rapidly progressed into blast crisis; unfortunately, her optimism, valiant fight and tenacity were no match for CML. She earned her wings quickly and I pray that she flies free.......

Where does this leave us? Her fighting sisters?


It leaves us vulnerable, sad and a bit lost.

It leaves us with an ache in our hearts', a hole in our soul;and that is alright; our hearts should ache for this terrible loss. It is alright to feel sad, it is alright to be angry that Karen's rocky road has led her to our Lord.  It is OK to feel these things, for this is normal; allow the tears to fall, allow yourself to feel sad, but don’t forget to also include laughter to your tears, because Karen would not want us to only be sad. She would want us to remember our shared laughter, hopes and dreams, and she would want us to continue to fight. She would also want us to live our best lives and to spend time with each other, our friends and our families.

And while we suffer for our loss, we must remember Karen's family, for as much as our hearts ache; their loss is immeasurable.  I cannot imagine their pain and I wish that there was some way, to ease their sadness; hopefully knowing how many lives she touched and how many people loved her, will help to ease their pain.

Karen’s dying leaves those of us living with CML, lost, confused and devastated. It leaves another hole in our hearts; another loss and another taken too soon, from this disease. We all have many questions, fears and concerns; but for now, those can wait. Right now all we can do is hold Karen and her family close in our hearts and remember the compassion and support that Karen always gave to us.

This it is a personal story that allows me a snippet of a glimpse, of how I believe that Karen may have felt in her last days.

A decade-ish ago, I had surgery to remove ovarian tumors; I was forewarned that the recovery was going to be brutal, and it was. I developed an infection several days post op and was near death; the hospital staff even had a student nurse in my room around the clock, monitoring my every breath and encouraging me to fight. What I remember from this time was being so sick, that all I wanted was to be left in my own little world; I did not wish to return to the real world.

The world that I had fallen into was a world that engulfed me in a way that sheltered me from my pain; I remember feeling completely at peace and utterly calm, and wished only to exist in that world. I swear that it was either angels or the Heavenly Father Himself, which wrapped their arms around me, and held me tight. I felt no fear and had lost that innate sense of fighting for survival; I was at peace, and was comfortable with dying. I did not have any regrets or any unfulfilled wishes; I was calm, accepting and very much, I believe, this is how Karen may have felt in the end; simply at peace.

I know that this may be difficult to comprehend, as sometimes it is hard for me to even look back and remember, but I truly believe that those of us that will knowingly face our own deaths’ will have nothing to fear. We will be able to face death with the faith, courage, strength and grace that our dear friend is currently, and graciously allowing us to witness.

Karen was a warrior that allowed us to share her journey; the good, the bad and the ugly and I am honored to have been a witness to this incredible, beautiful woman’s life.

Thank you Karen for the laughs, the love and the strength which you have shared; I shall carry your grace and faith with me, all of my days; May God Bless you, and hold you close during your final journey.




You rocked it, sister! I am proud to be your friend!

Bricks for the Brave!!