UPMC Shadyside 7West...Thank You!!!

I missed this yesterday and wasn't aware until I saw it on FB this morning.  One of the things I have learned through out my journey post-transplant that when you are grateful for something make sure you say it out loud.  You don't hear "thank you" very much these days.  In my previous posts, I have offered my "thanks" to my family, friends, acquaintances, and even strangers, who provided support throughout this life-altering ordeal.  I realized this morning that I may have forgotten to include the doctors and the clinic/hospital staff that offered their support.

On the day I was told I had Leukemia, the doctor from my hometown told me that I would be immediately going to Pittsburgh the next day.  I was also told that I could be there for a month or more in the hospital, and isolated and protected from any possible germs, etc.  My life and my family's life was completely turned upside down.

The following day on the trip to Pittsburgh, I kept thinking how scared I was of the unknown and how I was to be isolated and secluded.  The most traumatizing moment of that day was the bone marrow biopsy that was performed without any medications.  I don't have a very high pain tolerance and I'm very in tune with my body, so for me it was excruciating not only because of the pain, but it was traumatizing because this was just the beginning or ending of my life.  To this day, due to that traumatizing event, I need medication to calm me in order to perform the procedure.  I was angry with the doctor who performed the procedure and didn't understand why they would put a human being through such torture.  But later, I found that it wasn't that they wanted to torture me, but they needed me to be aware and mentally present when discussing what was going to take place from that day forward.  At the time, I was quite angry but now I understand.  And, ironically, the doctor that performed that biopsy is the one I have requested for all biopsies.

From that day forward, the staff was remarkable.  They truly showed their compassionate side and tried to make not only me, but my family, as comfortable as we could be during that most stressful time.  They really "bent over backwards" to accommodate my needs and my family needs.  They were empathetic and understood the stress we were under and didn't want to add to that.  Any time, I "buzzed" for the nurses, I hardly felt like a nuisance.  I very rarely was questioned as to my requests and they tried within their power to make me (and my family) as comfortable as possible.

The staff became a part of our family.  We developed close relationships with some of those people and I am even friends with some of them on FB.  

Even though having Cancer and going through chemotherapy treatments was sometimes a harrowing experience, the knowledge of knowing that the staff truly cared and supported us, helped gave me strength to fight the disease.

I stated in a previous post that some of my closest friends were my biggest cheerleaders, and they were, but the UPMC Shadyside staff on 7 West were also cheering me on and giving me the motivation not to give up.

So I dedicate today's blog to the UPMC Shadyside Staff (7West) (from the doctors, physician assistants, nurses, etc)...Thank you so much for ALL OF YOUR EMPATHY...PATIENCE...and SUPPORT!!!  

Finding My Donor...Hooray!!!!

I'm so excited to report that I received information regarding my donor.  I'm so excited and can't wait to communicate with her.  This is so exciting!!!  I finally have a name..."Andrea W".  I even tried to see if I could find her on FB.

I can't even express in words the feelings that I have...Elation...Euphoria...Excitement, is just a few that come to mind and so many more I can't write all of them down.

I will keep you posted as to this new "friendship/relationship".  This is another step in my journey in which feels more complete and less alone.  Just having a her "name" feels less strange.  She was always a mystery and sometimes it didn't seem real.  But now, actually knowing, that "yes, she is out there...living and breathing...who selflessly gave a part of herself to allow me this Gift of Life".  It makes it "so real".

I'm hoping that there will be no language barrier.  I'm hoping she is familiar with the American English language.  Even though I took "German" as a second language in high school, the only thing I remember is how to count to ten and how to say when my birthday is.  Haha :-)

I will report back on this new part of my journey!!!

Where Is My "Hat"...My Protection and Shield

Oh No!!!  Where did it go?  Did someone take it by mistake?  I know I wouldn't just lay it somewhere and forget about it.  I need it!!!  I have to have it just 'in case' something comes up where I need to wear it.  My heart is pounding, my throat becomes tight, my nose starts tingling and the tears begin to form.  I'm thinking to myself, "I can't believe your actually having a panic attack over losing a stupid gray dull hat"!!!  I go outside, in the dark, to the vehicle to look inside.  I step close to the truck and I notice directly below the door a dark spot in the snow.  I bend over and get close and there it is, my "hat".  I have such a sense of relief when I see it lying there in the snow.

I still can't believe the reaction I had to the thought of losing this damn hat.  My husband, the kids and I went out to camp today for a birthday party for the son and daughter of two really close friends.  There still is a lot of snow on the mountain top and even though I took the time to try and style my hair, I still had my dull gray hat with me, in my purse.  It goes with me everywhere when I venture out without it on.  I always need to have it as a back up, especially during the winter, because my head gets so cold, so easily.  My hair is so thin and even though its thickening up some, there is still much of my scalp to be seen.  And because of not having much to cover my head, I get cold quite quickly.  At least this is what I tell myself, which really is true, but I definitely realized tonight that it is only the partial truth.

My "hat" has become my security.  It has become a form of protection, almost like I'm invisible or more normal.  Some would think, how would wearing a winter hat make you feel more normal when most people hardly wear hats all the time like that?  And yes, normally I probably would agree with you but for me it does make me feel more normal and less self-conscious.

I really thought I was moving forward with my outward appearance but now I'm realizing I'm just lying to myself.  I am still having a difficult time with these outward changes.  Some people say that they don't see that much of a difference, even though my hair may be darker and I'm wearing glasses, many people still see the same person.  But for me, I still see a total stranger in the mirror.  It has become quite difficult for me and I realize I have been using my "hat" as a shield.  Maybe in some weird way, if I wear the hat, I'm covering what is so different about me and its easier to imagine the "old" Dee before cancer or relapse.  When I am not wearing the hat, I feel so exposed and so vulnerable.  Is this normal or am I literally going crazy?

I am very thankful that I'm still alive but why is this part so difficult for me to get through?  Is there anyone else out there that has been through something so life-altering which has affected your appearance that you may feel the same way?  If its not the hair, its the face for someone, or some other part of your body?  Why can't I get past this?  Some days I begin to feel good about the outward changes and I begin to accept them and then other days, I'm grabbing for that "hat", or that shield.

I need to learn to love me for who I am now, and after tonight, when I couldn't find my "hat" and nearly had a full-blown panic attack, I knew this attachment was not healthy.  I will try my best to take the steps to fully embrace this new version of me.  The steps my be small at times, and I may go in circles at times, but all I ask is for patience.  Patience within myself, and the patience of others around me.  I guess this is just part of the journey with learning to cope and heal.  I promise I will get there.  I want to be comfortable in my own skin, like I was before, it's just going to take a bit more time.

(Illustration from "I Want My Hat Back" by Jon Klassen)

Why Do I Feel Such Guilt???

Sometimes I question myself about why I feel so much guilt with my diagnosis with Leukemia and my relapse and transplant.  Even though having cancer was out of my control, I feel guilt for what my husband, children, family and friends went through while I was fighting for my life.  Is this normal???

Again, I know having cancer was something I couldn't control but it doesn't take away the feeling of guilt of what the burden of me having cancer had on my husband, my children, my family and even my friends.  During my treatments and during my stem-cell transplant, I may occasionally had that "guilty" feeling but it was quickly replaced with fighting and surviving.  It wasn't until after transplant, especially now 2 years later, that the guilt begins to set in.  That "guilty" feeling hasn't lessened especially after seeing other success stories of individuals who have healed more quickly than me or have returned to working full-time more quickly than me.  I understand that each person's experience with cancer and transplant is their own and there are no two experiences that are alike.  Even knowing that still doesn't take some of that guilt away.

On the days where I'm not feeling 100%, I do feel that guilt.   I feel guilt if I can't keep up with the things around the house.  I feel guilt when I'm unable to attend an event.  I feel guilt if I can't partake in something with my children, family or friends.  I feel guilt that I haven't been able to return work full-time.

Why all this guilt?  Is this showing a weakness in me or a fear I'm not aware of?  I feel that so many people in my life have carried the burden of my cancer and the after-effects of that cancer and that if I can't do something or fulfill an obligation, I feel guilt for burdening them further.

Will this feeling of guilt ever go away?  It's not a daily feeling.  It may be more circumstantial and dependent on my mood that particular day.  There are things internally that one goes through when battling for their Life whether it was due to an illness or a tragic accident and it continues after when trying to get back to normal.

The "guilt" and the "worrying" maybe just all part of the process of healing and moving forward.  And to know that what I have been through was not something that was minor but a life-altering ordeal.  It was something that was out of my control and I need to try and stop worrying and remove that burden of "guilt".

"Thank You" Just Isn't Enough

I'm very excited today.  I have just made the first step in contacting my donor.  The "release of information" has just been sent.  I have been told it may take as long as a month to know anything.  Also, I'm aware that my donor can choose whether she may or may not want to respond.  There are many emotions going through my mind right now.  I'm feeling anticipation and excitement knowing that I may be finally able to communicate with the one person who has "saved" my life and has given me this third chance at living.  She has not only given me this gift, but she has given this gift to my husband, children, family and friends.

With these feelings of anticipation and excitement, I also have a sense of "fear".  A fear that, for whatever reason that may be, she may wish not to make that contact.  I will most definitely respect her wishes but there are so many questions in my mind and the changes I have noticed within myself that I constantly wonder could it be because I also carry "her" through out every artery, capillary, vessel and marrow in me.  I will never be alone because I will always have a part of her with me.

If she accepts my request for contact, I'm not sure where to begin.  Just saying "Thank You" doesn't seem enough.  She, along with God, has given me another opportunity of Life. She has given me the chance to be a wife to my husband and a mother to my children.  She allowed me to continue to see my family and friends on a daily basis.  It's because of her selfless decision that I'm here.  I can't even describe to you the amount of emotion flowing through me at this moment.  I guess it's better to break down now, because if I'm given the chance to communicate with her, I will need to maintain some form of composure.

So, today is another step in my journey.  It has taken me some time to decide to do this.  I needed to be ready for that contact to be made.  I feel I am ready for where ever this may lead or will this may end.  It could be a beginning to a new friendship or a closing of a chapter in my life with the knowledge that because of "her", I'm here and I will always be grateful for "her" Gift of Life.

Looking Back and Moving Forward

It is difficult moving forward without looking back at your life's journey.  I was reminded of this this past weekend when watching the DVD of my wedding that took place 14 1/2 years ago.  Originally, the video of my wedding was recorded on a VHS tape and my parents had it transferred to a DVD.  I was surprised to find this out and became very emotional when I was told.  I instantly began crying and I couldn't pinpoint exactly one reason why.  There were so many thoughts running through my mind about that day.

Ever since I was a little girl, I have always dreamed about what my wedding day would be like.  I was definitely a fairy tale girl with "happily ever afters".  I believed my wedding day would be one of those too.  Unfortunately, there were circumstances that occurred that day that destroyed that illusion.  Due to the hurt and war of emotions that occurred that day, I had trouble looking at my wedding day as anything but anger, hurt and sadness.  I allowed myself to be ruled by those emotions when looking back.

But 14 1/2 years later when I watched the video, I watched it with new eyes.  Yes, it wasn't my dream wedding but it was so much more.  I look at it with new eyes and a better sense of what truly is important.  I listened and watched the personal messages, including my husband's, that spoke of love and looking forward to a future that will be full of ups and downs, and the "downs" being a part of life's journey and that neither of us will be alone in that journey because we have each other to lean on and carry each other through.

Furthermore, I see the support of so many family and friends (past and present) that were a part of our day and believed in "us" as a couple.  They gave their unconditional love and support.

Watching this video was definitely a re-awakening of that day that I, unfortunately, looked upon as a day sadness.  I was so selfish in my thoughts of what that day should be rather than what it was.  That day I truly received the best gift ever.  I received the gift of acceptance and unconditional love from a man who has been by my side through all the ups and downs of life and life with cancer.  He has always looked upon our wedding day this way and I always failed to look at it through his eyes.  But, now I "get" it.  Having this third chance at life has made me aware of so much that, at the time, I thought was important but was actually a trivial thing.

Now, I look at my wedding day as I day where a vowed to love, honor and respect the most wonderful man in my life, while being surrounded by the love and support from our family and friends.

Chemo Brain Card

I love this...even two years post chemo...it's still an issue for me...thank God for technology and syncing calendar and lists...or else I would be totally lost!!!

***Chemo Brain Card***

Official Chemotherapy Survivor 
This card entitles the user of this card to pull the
"Chemo Brain Excuse"
Anytime the owner of this card deems it necessary
This card may be kept and used as many times as needed
During and after any chemo treatments
For as long as the owner of this card needs to!
"No excuses needed"

BLAME IT ON CHEMO BRAIN!

This card is valid for only survivors of chemotherapy
And is non transferable
There is no expiration date!
And this card has no cash value!

(Note:  I found this through a "closed" FB Group I recently joined...I loved it so much I had to share)