Who am I???

Who am I???  This has been the most difficult thing to answer after everything I have been through.  I thought I knew after my first remission and was living life and having the time of my life.  But after relapse and transplant, I'm figuring out things are much more different.

You would think, at least I did, that having a transplant should be something easy in regards to your mind set.  Maybe you would think..."hey, I'm only having a stem-cell transplant, its being done by IV, its not like I'm receiving a whole new organ from a complete stranger...everything will be OK and I just need to fight so my body won't give up".  Well, I certainly learned it is so much more than that!!!

I am extremely grateful for my donor and her willingness to donate a part of herself so that someone else, a complete stranger, has the ability to live.  I am looking forward to meeting and/or speaking to her someday.  Its just that I'm not sure I'm even ready yet.  I have too many things to work out on my own.

In my previous post, I spoke about some of the changes in me than some people have seen some of or very little at all.  And, I am so perplexed by it all.  I feel as if so much of me has changed internally and externally and it becomes so frustrating when people just don't get it.  And realistically, I know they are not going to because they haven't experienced it themselves. 

Prior to transplant, I was a very compassionate, emotional person, and I think I still am, but just on a different level, more tame and level-headed maybe.  Although, some may say, that I can be more harsh with my words, and although I may come across that way, I'm just speaking my mind with no malicious intent.  I just don't hold back what I'm thinking or feeling anymore.  I used to tip toe around voicing my opinion because I didn't want to hurt someones feelings.  Now, I tell them how I'm thinking or feeling about something and try to let them know that I'm not dismissing their feelings or points of view, but this is where I'm coming from and why...and if its not something they want to hear or accept...its not my problem.  I feel I'm taking more of a stand!!!

I always seemed to have some type of health issue throughout the years.  Whether its was teeth/braces, gynecological/fertility, allergies, etc. it just seemed to go on and on.  Of those health issues, allergies was an ongoing seasonal battle.  It began as seasonal than turned into food allergies which included nuts and raw fruit, which I loved.  Well, after transplant, my nut allergy disappeared, my fruit allergy disappeared and trust me when I say, I am so happy because I can have those things that I used to love so much.  But, yet, it was another change from who I was before.  Is this due to my donor??? Is it due to the toxic chemo that destroyed my immune system and maybe even some of my organs???  Is it a combination of both??? Who really knows, other than its yet another change.

Another change that has affected me is my appearance.  Now some of my friends/family say that they really don't see much of a change.  But, when I look in the mirror I see a complete stranger.  Being a blond for 35 years has turned into a brunette.  Its one thing to intentionally do that, but this wasn't my choice, so to deal with that and know I'm not allowed to chemically change my hair color is one I'm still trying to cope with and learning to embrace.  Another change is the amount of hair I have or don't have.  I have always had fine hair but at least it covered my scalp.  Now its still fine, but frizzy looking and so sparse and thin you can see right through it to my scalp.  This has been the biggest adjustment for me. People really don't realize how much you identify yourself by your hair.  It says something about you and makes you feel a certain way.  You, ladies especially, know what I mean by a bad hair day.  Well, let me try to put it in perspective for you.  Try taking that bad hair day and multiply by 100 and add to that the bloatiness and fatness you feel at that time of month...add to that glasses that you never wore before and a rounder face caused by steroids...and trying to deal with those changes almost instantly (within a week) versus a gradual over the months and years change.  The slower change is easier to process, but the instant self image change is a lot to take in.  So, the question is after that description, how did it make you feel?  Did you tense up a bit?  Did you want to hide from the rest of the world because you felt so wretched?  Maybe some of you did...maybe some of you didn't.  But it does effect you...and like I said in an earlier blog, I'm not going to hide anymore.  I'm going to learn to embrace this new image of me.  I can't stress over it and I can't really change much about it, for numerous reasons, so instead of fighting it...all I can do is learn to embrace it.

Its rather odd to know that someone else's blood, and part of their chromosomes/DNA are inside of me.  Now, my DNA hasn't changed but its like someone else is there inside of me.  A complete stranger.  I have no clue what she looks like, what she craves, what she detests.  Its almost like someone else has taken my body hostage.  There are some glimpses of myself but there are many things different.  And are those differences due to just the experience of it all???  Are those difference due to my donor's cells in my body???  I have thought..."would it be easier if it would have been an organ or limb transplant because its one thing, something more tangible in a way".  I think at times..."oh my gosh, I have this person's blood running through out my entire body...their blood is running through my bones and organs...when I bleed its not just mine but theirs too".  Its really the most mind-blowing thing to try and cope with.

There are still many limitations as to what I can and can't do.  One I expressed on FB.   I noticed a pile of leaves in our yard and thought how much fun it would be to gather them all and form this huge mountain of leaves that my kids, husband and I can jump in.  But I'm not allowed due to molds and fungus, etc.  So now I can only stand back and watch and that's okay because, at least, I'm here laughing and watching them rather than observing from "up above".

I also need to be careful with sun exposure.  I can be exposed to sun for more than a few minutes.  I need to have sunscreen on at all times (which I have a hard time following through with that) and I walk around with umbrellas at amusement parks, beaches, my kids games, etc.  It can be very frustrating.  If its not an umbrella than I need to layer up the clothing.  So as much as I am trying to cope and process this new normal, I have children that have to make that change as well and learn to cope with it...which will be a later blog.

There is also something that is difficult to deal with that some call "chemo brain" and that is a blog in itself too, as well as, my diminished enegry that I haven't fully recovered.

So now I'm just trying to cope with all of these inner and outer changes that definitely effect the psyche.  I'm just trying to process it all and discover who I am now.  Who am I??? I'm definitely not the same person before cancer.

Hopefully, I have shed a little light on one's experience of cancer/transplant.  I hope that I have provided a little insight as to what someone may go through.  Again, I'm not stating that everyone who has gone through something like this feels the same way.  I can just relate my experience and thoughts. 

And I feel that I'm beginning to cope and accept who I am now.  I was fighting it before and due to my very stubborn nature, I was refusing to accept what my body was unwilling to change.  Because I need to be in control...and well, this is just one thing I don't have control over.  Maybe years down the road I may, but hopefully by then I will not find the need to change who I am and be comfortable with this new version of "me".

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