Saturday, May 25, 2013

What is Your 'Motivation'

What gets you motivated?  What moves you?  Is it just one thing or is it a number of things?  I found it is numerous things which affect me differently.  Somethings affect my emotional well-being, other things affect my physical and spiritual self, it can be separately or a combination of the two or all three.

Today, I began asking myself this question, after my morning workout.  This was a morning outside of my routine.  My usual morning involves myself only. Everyone in the house is still in bed sleeping, and most times, still are sleeping when I leave.  But this morning, my daughter was up and ready to join my morning.  I'm usually waiting to the last minute to get out of bed, but having her so excited to go with me to work and see that excitement on her face was my motivation to get up and moving.

It was also a morning of great life lessons of acquiring healthy ways of living and still having fun while doing it.  We enjoyed a full workout.  We shared a breakfast of Greek Vanilla Yogurt with Kashi GoLean Crunch and diced strawberries, which is one of her most favorite things to eat at anytime of the day.

I'm very lucky and blessed to have such a compassionate, empathetic and smart young lady in my life.  Like any of us, she has a day that brings back those memories of me being sick and being so close to losing me.  But I hope that I can show her by my words of encouragement and my actions, that even though we've been through some hurdles, that we can carry on and embrace the 'life' that we have been given. :)

Thanks "A" for being such a wonderful daughter.  You make me so proud and 'motivate' me to be a better person and mother!!!  I Love You!!!

Friday, May 24, 2013

A Warrior

I am not a 'Survivor'.

I am a 'Warrior'.  I am still fighting.

What have I been thinking?

I just woke up from a not so great dream, unrelated to Cancer, but it was mentioned in the dream.  So, I'm lying here thinking of the dream and just realized “I didn't beat Cancer". It took having to have a stem-cell transplant for me (my body) to beat it. 

I'm scared now.  I really don't know what I have been thinking.  I've been going on thinking that I won the battle.  But, the Cancer actually won because it had come back.  And the only way for it to be completely gone is my donor.  My life-saver, my saving guardian angel.  If it weren't for her, I wouldn't be here.

I'm not totally clueless that I didn't fight. I fought through the treatments and I'm still fighting the side effects.  I still fight everyday to remain strong to keep the GVHD symptoms to a minimum.  But if I do something that could put my donor cells at risk, my Cancer would be back..

I really don't know where my mind has been with this battle between life and death.  Well, I guess I do.  I was just trying to battle through whatever obstacle came my way.  I'm not a Survivor.  I am a 'Warrior'.  The battle is still being fought.  I will be battling everyday, for the rest of my life.  I will be battling to keep my donor cells healthy and strong so that if that Cancer wants to show its presence again, those cells will be strong enough to 'win' the battle. 

The doctors say that after 5 years, I'm considered 'cured', but am I really?  Maybe if I had fought off Cancer myself I would be more able to believe that.  It's my donor, Andrea, who has help me fight this battle.  She is my armor and my sword.  Without her, I wouldn't be here.  I was grateful of her before I came to this realization so early this morning.  But now, I can't even find the words to describe how much that means to me and how thankful I am.

So now, I will keep fighting.  I will nourish the Warrior inside of me and will remain healthy and strong, so that it can make and keep my donor cells 'battle ready' for the enemy, Cancer, within.

Image Source:

Wednesday, May 22, 2013

What is "Beauty"

Have you seen those special news programs on TV where they ask a woman to go undercover as something that our society has labeled or viewed as 'against the norm'? (i.e.wearing an obese suit, a face covered by acne or other blemishes or disfigurements, etc) During the program, the TV host reports how that specific individual was treated while in their disguise and how they were treated as they "normally" look.  Usually when comparing the two scenarios, there are many differences between how that person was treated.  I think it is safe to say, that many of us make a decision whether we are going to like or accept a person based upon looks alone.

I have definitely been guilty of making those preconceived notions.  While I was a supervisor for a county agency, we had a lot of rollover with our employees due to burnout, which in return, the management team sat through many interviews.  I knowingly made assumptions about the person being interviewed on that first observation.  I was very critical of those who walked into that interview room.  If they were not dressed appropriately and showed one small ounce of being unprofessional within seconds of the initial introduction, I basically wrote them off.  I thought that if they couldn't take the time to care for the appearance, then their lack of effort would also show in their work.

Even in my personal life, I have been guilty of making quick judgments regarding people.  But my views have changed a lot.  I no longer make those quick judgments.  I take the time to listen and get to know somewhere before I form an opinion.  I have learned a lot through my experience and during the aftermath of  battling cancer.

It has been close to a week since I decided to 'embrace the wig'.  I had been living in denial for too long (2 1/2 years) and had to finally realize my hair just wasn't coming back.  So, I made the decision to either cry on a daily basis trying to have my hair look somewhat okay or I can face the facts and have some fun with 'wigging it'.  After I made the decision, I realized I am living the real-life "fictional" scenario that has been on TV.

Today, I realized I'm the woman in a disguise.  Although, this disguise isn't just a one day thing.  My disguise is going to be a daily thing and that the "real" me will only be seen at home behind closed doors.  I also didn't realize until just today how I am received by strangers as the person in disguise versus the 'real' me.   This realization only applies to strangers because all of my family, friends and acquaintances treat me as they have always treated me, with respect and acceptance.  But for those who don't know me or what I have been through, it has become very enlightening.

During my experience battling cancer and losing my hair, I basically was a walking neon sign.  I usually had a mask covering my face to prevent any germs or infections.  I either had my lucky gray hat, or some other head-covering to hide my bald head.  At times, I was very thin and other times, I was so puffy and round from the steroids,  I didn't even recognize myself.   So I could understand, the quick glances, people not wanting to maintain eye contact, and yes, even the whispering.  Now it's 2 1/2 years later, the steroid swelling has gone down and I no longer need the mask.  I even tried to embrace the fine hair.  But, it didn't work.  My neon sign isn't as bright but I still am not what society deems as 'normal' and I contribute that to my hair.  I came to this conclusion because today I was greeted a couple times by complete strangers saying hello or even commenting on the weather and striking up a conversation which prior to last week rarely occurred.  At times, I would attempt a conversation or offer a brief smile and more times than not, I didn't receive a response or if I did, it was brief with very little to no eye contact.

However, today, wearing my wig, another person initiated a conversation with me at the gas pump about the weather.  They smiled and maintained eye contact and was very pleasant.  While I was in a store, I was acknowledge and greeted and even asked if I needed help with anything.  I had been in that store a few other times, without the wig, and never had anyone approach me.  Is this just coincidence?

This is just a theory.  Maybe people are more likely to approach or initiate contact because before I wasn't confidant in myself and now by wearing the wig, it has made given me more confidence and I feel more like the 'old' me.

Either way, it has definitely taught me not to jump to conclusions.  That when meeting someone new, not to be too quick to judge.  We all have our faults and insecurities and that we really should try to get to know a person and not get so caught up with what society deems 'normal'.

Image Source:

Wednesday, May 15, 2013

Having Some Fun

I recently posted on FB my frustration with my hair and have gotten many responses on and off FB.  I truly appreciate the kinds words everyone has given me.

I thought I would try to put in perspective what exactly this experience has done to my 'self-image' psyche .

For anyone who truly knows me, I have always had an insecurity about my appearance and body image.  I have always set a standard as to what I felt was adequate and comfortable to me...and I believe we all do that in one way or another, with some of us having bigger issues.  So after going through the transformation I have gone through,  it has definitely interfered with those standards.

Let me go back a few years to my initial diagnosis and the months of chemo.  Initially, when I began the chemo, my hair didn't fall out on the pillow and I wasn't waking up in a pile of hair.  The reality of losing my hair came when I would use the brush. At first, it was a few strands more than what a normal brushing would be for someone.  Then one morning, the hair completely filled the brush.  I remember staring at it thinking 'oh my God, this is really happening...what am I going to do?' Silently, I thought about it all day and finally said to my husband and mom that I'm just going to shave it.  It was harder to see a brush full of hair every morning than to shave it all off.  So I made the decision to shave it off. I told the nurse Patti that I wanted this done and even though it was at the end of her shift, she did it. 

I don't even know where to begin or how to describe the emotions of such an experience.  To go through it once is emotionally draining and the second time is even more.  It felt to me that I was being partially stripped of my identity, of who I was, but it wasn't just about my appearance, it was internally.  That's the part that does the most damage.  Many people have said they see the same Dee and that they don't even pay attention to the hair which really surprises me because that's all I see.  I want to see what they see so badly but it's the internal 'emotional storm' that is wrecking havoc and preventing me from seeing what they see.  

Before my relapse, I actually loved my hair. It felt fuller and thicker and was wavier.  It was my most favorite style. Surprisingly, after several months and at the end of my chemo treatments, my hair was growing back.  But after relapse and the transplant it became the exact opposite. Is it because of the toxic, lethal doses of chemo, or my current medication , or is it a combination of both? Whatever the reason or reasons, after 2 1/2 years post-transplant, my reality is that it's not coming back.

And this is where I am now.  Realizing my life will more than likely be a life of hats and wigs.  And I can continue to pretend that maybe this will be the day that my hair will be grown-in, or I can face the truth.  I've been swimming in a sea of denial for a long time and now it's time to face the shore and journey toward my land of reality.

So, here I am now, searching for my new 'do' with thoughts of having some fun... fun with styles, fun with colors, and knowing I may never have to face a 'bad hair day'. :)

Monday, May 13, 2013

'Wigging' Out

Yep...going to try the wig again.  My hair just isn't growing in. It may be getting longer but as for fullness or just isn't there. So either I continue my life in hats or I finally succumb to the wig. 

May as well have some fun with it. Going to try different styles and colors.  Plus the wigs will help protect my scalp from the sun. I would have to wear hats or head coverings in the summer anyhow going to start checking websites out on the internet and have some fun.

Check out my before & after below...let me know what you think ;)

Tuesday, May 7, 2013

How Are You Doing?

"How are you doing"?  Wow, that's a loaded question.  If you mean right now at this moment, I'm here. I'm breathing. I'm with my family (husband, children, etc) appreciating that we are able to be with each other. So, to answer your question, I think I'm fine. So am I???

It's quite difficult to answer.  I assume people are still concerned or want to know how I'm doing health-wise and all I can think is, "today I'm cancer-free". I'm here. I'm free. So today is a good day.

But it's more than just being "cancer free".  There are days where my emotions are extreme and I either want to cry or I want to explode with anger and frustration.  Sometimes, I want to do both. Or it can be I'm having a good day and something occurs that strikes an emotional chord with me that I feel a whirlwind of emotion that I don't feel I have control and either I tear up or vent in anger.  Then after the episode, I become angry at myself for reacting the way I did and I beat myself up over my reaction, because I do have control. But for some reason, I'm not using that control.

Right now, it's 5 o'clock in the morning, I've been lying awake for an hour or so.  I'm coughing and congested again feeling sorry for myself.  With that sorrow comes the anger. Angry at myself for yet another weakness.  When will all of this get better? It seems the only thing that is better is being cancer free and being able to be with my family and a few of my friends.

Maybe I thought that at this time, 2 1/2 years post-transplant, I would feel close back to normal. I knew I would never truly be back to where I was but I at least thought I would be a closer version than what I am right now.

Some people may think, "she thinks too much and just needs to enjoy being alive". Oh boy, how I wish it would be that easy.  I did at one point in time feel that way.  It was before my transplant, during my short time in remission.  I was so happy, carefree, enjoying so much of life and being thankful for having a second opportunity to live.  Then I relapsed.  It was such a blow to my emotional/mental state.  How do you recover from that???

The fear is always there.  I know I have no control over it but it doesn't take it away.  Like I said before, the emotional impact of my relapse was more devastating than my initial diagnosis.  So what happens now? How do I move on from here? It seems when I try moving on, there is always some setback.
My blogging really does help.  It helps keep all my thoughts in some form of order.  And I've chosen to make some of my most private thoughts public, with the hopes of providing comfort to someone in a similar situation.

So I guess that is what I need to do.  Keep blogging my thoughts and feelings, and utilize other healthy forms of therapeutic intervention, and just keep taking things day by day.

Wednesday, May 1, 2013

My Sense of Freedom

I began my journey to Pittsburgh this morning knowing that I had my breathing test today.  What I didn't realize was the rush of so many emotions when walking outside toward the hospital doors.

I didn't realize until this moment on how much the days, weeks, and months of isolation affected me.  I didn't commit a crime, I didn't steal or even murder anyone but my life was like an incarceration.  There may have been no bars on the windows or doors being locked down.  There may have been no cuffs or no security patting me down.  But it didn't stop the feeling as though I was a prisoner. A prisoner to cancer.  A prisoner to the hospital, to my room, to my bed.  Even though there were no cuffs or shackles, my cuff and shackles existed in the pole I had to cart beside me while it pumped the necessary drugs into my body. 

When I was given permission to go outside, it was like a reward.  Something that may be comparable to a prisoner being given a reprieve to go outside for 'good behavior'.

During that time, those were not my thoughts, I was just living in the moment taking it hour by hour, day by day. But now, having and feeling the 'freedom' I have now, I didn't realize how isolated I felt.  Although I have no idea what its like to be incarcerated, I'm sure it could be very close.  I had no choice and had no control of my situation.  Cancer created my incarceration.

Today, as I got out of my car and began walking toward the hospital, I breathed deeply. I tilted my head back, closed my eyes and soaked up the sun's rays which was something I couldn't do before.  I relished in my sense of freedom.  I had no mask to cover my face.  I had no pole attached to my body.  I wasn't limited to my room, to the hospital halls or the hospital 'gardens'.  I was free to go wherever I chose to go. I remember during those isolated days, sitting in the garden, and watching my family come and go freely and how I ached for the moment that I would be able to do that again.

So today as I experienced those feelings, I became very emotional knowing that I have what I ached for. My ache has been soothed with my freedom. A freedom that I will never take for granted.