Wednesday, October 31, 2012

God's whispers...can you hear Him???



I'm not an overly religious person.  I don't attend church weekly or monthly.  I was raised Catholic and, at times, still adhere to the Catholics prayers and beliefs.  Since my diagnosis, I have questioned many things and my spirituality has been one of them.  When I begin to question things that are going on in my life, it's like I hear whispers.  And I'm not talking about actually hearing someone whisper to me, but having a fleeting thought or something out of the ordinary happens.  Most of the time, a thought goes through my mind and I quickly dismiss it and move on to whatever I'm doing.  Then maybe a few hours, days or even months later, that thought resurfaces with an experience that I just had.  I begin to question why this is familiar and then I realize that I've thought of it before once, twice or a few other times. 

I was reminded of this today while I was at work.  Some of the ladies that come in are aware of my circumstances.  There are some that are not aware but hear me discussing my current health with these other ladies.  After my conversation, I have some of these ladies, who are not familiar with my circumstances, approach me and ask questions.  They are sincerely interested and offer their blessings.

This one woman approached me and stated she overheard me speaking about some testing I'm going to have in a few weeks.  She asked if I could explain more.  I informed her of my diagnosis, going into remission, my relapse, then my transplant.  I explained that I would be having a bone marrow biopsy in a couple weeks.  She asked if I could give her the specific dates of my biopsy and doctor's appointment.  I gave her the dates and she stated that she will pray for me on those specific dates and she will let her sister know as well.  This really touched me and, even as I'm typing this now, is making me tear up.  I can't express to you how that made me feel.  It's going to make that very stressful day a bit easier knowing that a woman that I don't even know, will be praying for me that morning.  It gives me so much strength to know that. 

While we were talking, she shared personal information about herself and her family.  She is a survivor of cervical cancer, her husband passed away due to cancer, and her sister has been fighting cancer.  We were able to connect on a level that I haven't been able to with anyone.  I wish I could explain this deep, intimate connection her and I had.  I really believe this was one of God's whispers letting me know that I'm not alone.  He gave me comfort through someone else who has been through a similar experience. 

Over the summer, a friend of mine stated she was listening to Oprah on her satellite radio.  And she stated that Oprah had spoken about God's whispers.  Oprah stated that he sends us these whispers to guide us to where we want to be.  It made so much sense because at the time, my friend and I were speaking of my career, and what it is I want to do.  So we focused on that issue.  But, after today, I realized those whispers are about anything in our life, whether its trying to decide which career path to take, or to ease the mind and body about something that may be causing stress. 

So in closing, I truly believe, God has carried me when I've been too weak from the chemo and cancer, he walks beside me to keep me company when I feel alone, and he whispers to me, to keep me going and to not give up.  I will believe, I will hope, and I know I'm not alone in this journey!!!

Image source: http://xatigirl.files.wordpress.com/2010/02/god-whispers.jpg

Tuesday, October 30, 2012

Coincidence??? Maybe!?!?!


I saw a posting on my FB "news feed" page.  And it really struck me and made me begin to think about my transplant and the process that took place.  They say a sibling is one of the best ways to find a match.  The process began with finding whether my brother was a match or not.  Unfortunately, in my case, my brother was not a match.  So, my doctor and the transplant team, began the search for a donor within the United States.  At the time, we were told that out of 4 million donors, in the United States, not one person was a match.  This was very disheartening to hear and we began to worry about what this would mean.  Does this mean my days are numbered?  Do I need to make peace with myself, my husband and children, my family and friends and with God?

This was a very scary time, but we were given the hope that there may be someone out there beyond the United States.  My doctor and transplant team began the search outside of the U.S.  We were notified that two donors have been found and both are of European origin.  Furthermore, we were told that these two donors were 100% matches!!!  It's really amazing to think that there are, at least, two individuals out there in this world, that identically match my marrow.  At the time, my mom made the statement about whether it could be a person who is in some way a distant relative.  After she made the statement, I really hadn't thought about it or have even discussed it with anyone.  But after seeing this posting today, I began to think more about it.

How amazing this could be!!!  I'm very lucky to be able to know that my mom is 100% Slovak (ancestors from Czechoslovakia) and my dad is 100% French.  Could it be that my donor or donors could be a distant relative?  My mom's great-grandgrandparents immigrated from Czechoslovakia more recently than my dad's family.  Could it be that one of my donor's could be Slovakian, or could it just possibly be someone from my French heritage? 

One of the things that I love about my website is the ability I have to see, in the world, who is accessing my website.  The majority of the hits, outside of the U.S., are Russia, France and Germany.  Could my donor be one of these individuals?  Or even better, could my donor be a distant relative?  I'm so excited to further explore this. 

I won't be able to further look into this until my two year transplant anniversary, which is just a month away.  At that time, if I choose, I am able to make contact and write to my donor.  It is then up to my donor whether they want to respond or not.  I am really hoping that this individual would like to make contact, not only so I can "thank" her for her precious gift of life, but so I can also see if she and I may have some ancestral connection.

One thing I learned is that there is a difference between donors in the United States and international donors.  We were told that most European countries expect their populations to be donors in some form.  It is expected of them to do this and looked upon as something you do.  Where as in the U.S., it is more of a matter of choice than expected.  So, this may become a factor when trying to make contact with my donor.

I am hoping and praying that she does want to communicate with me.  Either way, whether she does or doesn't, I am extremely grateful, to both women, for this unselfish gift of giving another human being the chance at life. 

So, if you are reading this from across the seas, and you are a bone marrow donor, you may just be the one that has given me another chance at life.  A chance to remain a wife, a mother, a daughter, a sister, a cousin, an aunt, and a friend to those around me.  Words cannot express enough, the gratitude I have!!!

Sunday, October 28, 2012

One Day at a Time....




"Each day that you conquer take it as a day of triumph.  On the tough days, use it to refuel you with strength.  Remember everything that is important to you and your life and use it to remind yourself why you fight.  One day at a time.  You can do it!!!

                                                                               - Ann, BMTSCTClub.com

Image source:

Saturday, October 27, 2012

My Rebirth...the Evolution of My "New" Self

I have stumbled and bled and felt so much pain during my rebirth into the woman I am and I've grown and learned and become strong like a tempered blade and not a single part of him is left in my being.
I have become something new and different and I'm still evolving.
~Zoe Tipsword


Yes...its true.  "I have become something new and different and I'm still evolving".

A  big portion of me died on November 30, 2010, and while a portion of me died, that portion was "reborn".  Its almost seems like a reincarnation.

I came to the discovery at my therapy session a few days ago.  My therapist and I were speaking about the transplant process and how similar transplant recipients feel afterwards.  I was speaking on how I thought it would be easier if my transplant was something more tangible like an organ rather than blood that touches everything within me.  She gave an example of a woman that she counsels who had a heart transplant and how the woman is very grateful for this gift of another's heart, but every time she feels its beat, it feels as though its fully not her own.  The woman has said that this heart was meant for that donor.  That donor was born to have that heart and when they passed it became her's but it was difficult to grasp that.  So, it definitely confirmed that I'm not the only one that feels this way.  And that no matter what form of transplant it may be, close to every transplant recipient may feel exactly this way.

So what do we do with this rebirth.  I used to get so angry when the doctors, hospital staff, even my family would say that I have a new birthday now.  I was like, "No, my birthday is in December...that is my actual birthday...I refuse to accept my stem-cell transplant as my new birthday...that is ridiculous".  But now I get it, at least I think I do.  It's not so much my new birthday as physically entering the world.  That, of course, will always be December 26th.  But it's like a spiritual rebirth occurred on November 30th.  An internal rebirth.  I get it now.  I can accept it now.  And actually, I'm quite excited by it now.   Does it mean I get two birthdays!!!  Hahaha...wink wink!!!

Seriously, though, I am excited about this rebirth.  Like I've said in other blogs, there are so many possibilities that lie ahead.  I'm so excited to see what they are.  It's almost like I'm "Alice" from "Alice in Wonderland" and I'm in that long corridor with all those doors and I can have my choice of any of them.  If it happens to be one that doesn't fit then I have other choices and discoveries, some may be good and some may be bad.  And that's actually okay.  Because everything is a lesson in life.  We, as human beings, have a reaction to everything.  It's up to us to decide how we react to those things. 

This self-discovery is so exhilarating and so addicting.  It may be very frustrating for my husband and family and even friends, but this is real.  This is real emotion, open and raw, that won't change.  I'm not going to fight how I'm feeling.  I'm just going to let it out there because its the easiest way for me to process this evolution of my self.

So what's next in this evolution of my self-discovery?  Who knows? I'm definitely going to blog about this evolution of self-discovery which could happen again tonight, or tomorrow or in a few days.  I'm really excited to see where this leads!!!  Which door am I going to choose? 

Image source: http://nice-cool-pics.com/data/media/22/rebirth__bhikkhu_bodhi_.jpg

Friday, October 26, 2012

You Picked the Wrong Girl......Grrrrrrrr!!!!




As much as I hate to admit this, let's face it, we all have our weak moments. 

I'm sitting here thinking about this past week and the next few weeks to come.  I have been very busy lately and it has definitely been zapping some of my energy.  But I keep telling myself I need to keep going!!!  I have so much planned these next couple weeks and I can't stop now.  There are two things that are "big" that I am worrying about.  The biggest one is the one I want to talk about now.  It's like I described in an earlier post.  Sometimes, its like I feel this big storm cloud hovering over me, and other times its like I'm cramped in a small dark place and I'm wondering if I will be able to break out.  It's not every day, but it appears every so often and the closer it gets to that dreaded day I'm thinking about, the more I feel the weight of the storm and darkness.

Yes, I know I have said it before, there is no point wasting energy on something you can't control, but I have those weak moments, and I'm just scared.  My bone marrow biopsy will be occurring in a few weeks and I can't seem to stop thinking about it.  First of all, it hurts like hell.  The first time I had it done, I had no medicine at all.  I really wanted to die!!!  Truly, I did, just ask my mom and husband who were there to witness it.  I never felt such pain in my entire life.  Secondly, the last time I had it done was 6 months ago and I was sick for days afterwards.  I'm not sure if they messed up my medication but I felt like crap for days.  It really did a number on me.  So, not only am I worrying about the pain, discomfort and possible sickness, I worry about the outcome.  This is where my "relapse" haunts me the most. 

I really am trying not to worry constantly about it.  I keep trying to tell myself things are better and the outlook has been great and the doctors have been very pleased with how well I have been doing, which according to them, say that I have done exceptionally well when compared to others.  So this does give me a boost of confidence, but not 100% because that little bit of doubt does creep in. 

I wish I could make it stop, and I'm sure it will someday.  I am getting better and it will take some time.  The "relapse" really came as quite a SHOCK.  I'm not sure if I can go through that again.  Maybe I'm stronger than what I give my self credit for, but I am only human, and can't always remain strong.  I will try my best, because like I said before, I'm stubborn and I want to be in charge.  So I guess I just need to keep saying it over and over again...I'M IN CHARGE....I'M IN CHARGE....I'M IN CHARGE!!! CANCER BACK THE EFF OFF!!!  Hahaha , that actually felt pretty good... just thinking and typing it just made me feel a wee bit better...Hahaha!!!

Well, I guess that's just what I'm going to have to do.  Once I begin to feel that worry or doubt, I need to turn it into anger and fight it!!!  No way is cancer going to take control of me!!!  I will not let you win!!!  I will remain in REMISSION!!!  You picked the wrong girl!!!

Image source: http://liz-green.com/wp-content/uploads/2011/02/grrrrr_main-300x184.png

Wednesday, October 24, 2012

"Whenever you are stressed or worried or uneasy, take a nice long walk in the nature, touch the ground with your feet, touch the trees with your hands, and the Divine nature of life will flow into you to ease your pain." - God want You to Know, FB



I received this message on FB and it made me reflect a lot on what I went through these past few years and even currently. 

Due to my suppressed immune system, then and now, things such as taking a walk, smelling the flowers, and just enjoying nature, are things that I need to be very cautious and careful with how much I'm exposed too. 

While I was in the hospital, the doctors allowed the patients outside, but we had to wear masks anytime we left the filtered rooms.  It was always such a treat to be outside.  I really enjoyed those days.  But there was still something missing.  I really couldn't fully enjoy looking toward the sky and have the sun beat down on my face.  I couldn't inhale the warm, summer air, or the cool, crisp temperatures of Fall.  It was times, like those, that I realized that I really didn't fully appreciate the things around me, such as nature.  Sure I loved the sights and smells and closed my eyes and soaked it in, but I never truly embraced it for what it was and is.  Oh, how I miss those days!!!

This evening, I have been reminded of that fact.  Fall is my favorite season.  I love the colors, the smells, and the cool, crisp weather.  We have a huge tree in our backyard and we definitely have to rake the yard a few times before winter sets in.  Tonight was one of those nights.  But, unfortunately, I'm stuck inside.  I'm watching through a window while my husband and children get to enjoy the piles of leaves, running through them, burying themselves in them and tossing them in the air.  It's a mix of emotions, happy, of course, that I'm even here to be able to watch them, but sad, because I question will I ever be able to be that free again???

So take this moment to embrace those things that sometimes we take for granted.  The next time you step outside and inhale the fresh air, or the next time you take a walk, or even, the next time you can just tilt your head back and soak up the sun, just remember what a privilege it is and embrace it!!!



Tuesday, October 23, 2012

My Journey and Transformation


Today was my regularly scheduled monthly appointment.  According to my doctor, everything seems to look fine.  He said the blood work looks good and everything else appears to be good too. 
Next month will be two years since my transplant.  Normally, at this milestone, standard tests and procedures need to be completed.  The biggest one is the bone marrow biopsy which will be done on November 13th.  The anxiety still hasn't dissipated, but its not ruling my life either.  One of the statistics that was given to us regarding being "cured" after transplant was 5 years.  But, I think that is the same for a lot of cancers.  Statisticians, Doctors, the medical/scientific world, state that if you remain in remission for 5 years, a person is considered "cured".  They further state, if someone has undergone a stem-cell transplant, and if that person achieves remission after two years, their chances of relapse are significantly small.  So there is a lot of HOPE.  I've made it this far and I'm still "hoping" that it will continue and has me reflecting on my journey these past three years.
It's been quite a journey.  I really don't even know where to begin.  Some may think that it begins the day of my diagnosis, but it really doesn't.  My journey began my first day I was brought into this world and took my first breath.  All of us have our "own life's journey".  And each journey shapes us into the person we are in the present.  All of us experience lessons in life and its up to us whether we learn from them or continue to ignore them.  So, as I sit here, I'm reflecting on my life lessons that I chose to learn from and others I, unknowingly, ignored. 
In one of my previous blogs, "Changes", I referred to three pictures, before cancer, in remission, and after transplant.  A friend of mine commented on those pictures stating that in the first two it appears that I have a look in my eyes that's inquisitive, like I'm searching for something and wondering what's next.  I looked back at the pictures, and think she maybe right, it really does look that way.  In my third picture, it looks as though, I'm happy and content, that I'm no longer searching.  And, I realized she may have really hit the nail on the head, because that's how I feel.  I really don't feel like I'm searching for anything.  I'm embracing life and the things that have been offered.  I'm less focused on what's next and how to make things better, in whatever thing I think needs fixing.  I always had the tendency to want to make things better, even if other's thought it didn't need to be.  I'm learning to live second by second, hour by hour, and day by day.  I'm enjoying the here and now!!!  It's unfortunate that it had to take cancer, relapse, and transplant for me to figure out what is best for me, but it's really okay.  If I hadn't been through this, I'm not sure where I would be, especially, on the inside.
Cancer doesn't define a person, but I am defined by what cancer has opened my eyes to, if that makes any sense. I definitely can say that I love myself.  I love who I am as a wife, mother, daughter, sister, aunt, cousin, and friend.  Maybe some people would say that they wish they never had to go through cancer, but I, honestly can't say that.  Cancer is a part of my life's journey and it has made me look at life differently.  It's made me look at what things I do need to take seriously and other things that really are not so important. Sure, there are things that still gets me riled up, and I bitch and vent to those who are closest to me and know me best, but after the venting, I'm done.    I can move on because what will be, will be, and I have no control of those things outside of me. 
I'm looking forward to life after cancer/transplant.  I'm looking forward to embracing what is next for me, my husband, my children, my friends and family.  There will be ups and downs, and that's okay, as long as I stay true to myself and embrace my life's journey.  Which will lead me to my next blog.  That blog may not be directly discuss the effects of cancer or transplant but a reflection of how cancer, relapse and transplant are affecting the decisions that I am making now and how it has molded me into the person I am today. 
I just wanted to thank you for reading my blogs.  There will be many more to come.  My blogs come from a deep emotional reaction to something that has or is occurring in my life.  I plan on moving forward, but in that journey, something from my experience with cancer and transplant, may trigger something that I need to discuss while I was suffering and trying to live through that dreaded disease.

Monday, October 22, 2012


Father of bone marrow transplant E. Donnall Thomas dies at 92

Thank You Mr. Thomas, for allowing me (and many others) another chance at life and survival. 
God Bless and Rest in Peace!!!



E. Donnall Thomas, a physician who pioneered the use of bone marrow transplants in leukemia patients and later won the 1990 Nobel Prize in medicine, has died in Seattle at age 92.
The Fred Hutchinson Cancer Research Center announced the death Saturday. A spokesman said the cause was heart disease.
"Imagine coming up with an idea, making it a reality and touching that many lives."
- Dr. Fred Appelbaum, Thomas' friend and the director of the center's Clinical Research Division.

Thomas' work is among the greatest success stories in the treatment of cancer. Bone marrow transplantation and its sister therapy, blood stem cell transplantation, have improved the survival rates for some blood cancers to upward of 90 percent from almost zero.

This year, about 60,000 transplants will be performed worldwide, according to the Hutchinson Center.

"Imagine coming up with an idea, making it a reality and touching that many lives," said Dr. Fred Appelbaum, Thomas' friend and the director of the center's Clinical Research Division.

Thomas took after his father and became a doctor after getting his medical degree from Harvard. In 1956, he performed the first human bone marrow transplant.

Thomas, along with a small team of fellow researchers, including his wife Dottie, pursued transplantations throughout the 1960s and 1970s despite skepticism from the medical establishment.
They sought to cure blood cancers by destroying a patient's diseased bone marrow with near-lethal doses of radiation and chemotherapy and then rescuing the patient by transplanting healthy marrow. The aim was to establish a functioning and cancer-free blood and immune system.

The procedure would go on to become the standard treatment for many sufferers of leukemia and lymphoma.

"He was brilliant, he was incredibly generous and he was quick to deflect praise from himself to the individuals around him," Appelbaum said.

"At the same time, while he was quiet and modest, he was stubborn," he added. "He believed in what he was doing and he was going to make it happen. It's hard to imagine today how hard it was to make this reality because it was against the prevailing medical wisdom."

Thomas joined the University of Washington faculty in 1963. In 1974, he became the first director of medical oncology at the Hutchinson Center. It is now one of the world's top cancer treatment and research institutions.

Thomas also edited the first two editions of the bone marrow transplantations reference book, "Hematopoietic Cell Transplantation," which would become a bible for the field.

"To the world, Don Thomas will forever be known as the father of bone marrow transplantation, but to his colleagues at Fred Hutch he will be remembered as a friend, colleague, mentor and pioneer," Larry Corey, president of the research center, said in a statement.

Thomas is survived by his wife, two sons and a daughter.

Article obtained from: Foxnews.com http://www.foxnews.com/health/2012/10/22/father-bone-marrow-transplant-dies-at-2/?cmpid=cmty_other_Father_of_bone_marrow_transplant_E._Donnall_Thomas_dies_at_92


Really?!?!

I came across this pic and link regarding preparation for stem-cell transplant which is really great ...although the picture not so much.  I did not feel nor look like the pic regarding my stem-cell transplant.  Maybe it's just me, but I really didn't feel like celebrating the way some people do.  Its like experiencing a death and birth at the same time, it's a mix of different emotions!!!






>>To READ, click on Link below:
https://www.facebook.com/notes/bone-marrow-and-stem-cell-transplant-survivors-club/preparing-for-a-stem-cell-transplant-tips-from-a-stem-cell-transplant-survivor/130113697026520

Image source:
 http://marrowdrives.org/illustrations/stem_cell_transplant_illustration/hickman_catheter_stem_cell_transplant_514w.gif

Saturday, October 20, 2012

Ok...Shit Just Got "Real"!!!




Next week (Tuesday, October 23rd)  is my standard follow up appointment in Pittsburgh.

This is the moment each month that it all boils down to...the waiting!!! 

It begins even before I see the doctor.  It begins the week before, the days before that dreaded appointment.  It begins, all over again, that morning, when I'm getting up and getting ready.  It's while I'm in the car, driving the same roads that have been driven a hundred times before, with either the same or different outcome.  It's the same as we pull up to the clinic, walk through the doors and board the elevator.  It's there when I'm signing in and waiting for my folder to carry to Section H.  It's there as I'm looking around the waiting room, looking at all the other patients and families.  I'm wondering, "are they thinking the same things as me...what things have we experienced that are similar and what things have we experienced are different...are they just as scared as me at this moment...are they wondering whether their news will be welcoming or are they wondering if their life is going to be thrown into complete chaos, again???  I can't even begin to describe all the thoughts that race through my mind.  I think ..."this should be simple, this should be easy...I'm in remission...I was doing well last month...I should be doing well this month".  And maybe it is that way for some people, but for me, it's one big mountain of anxiousness because I've allowed myself that comfort zone.  I've allowed myself to think "it's" gone.  I've allowed myself that joy of living life...and to have it all taken away from in one appointment, saying "you've relapsed". 

So here, I am now, after transplant thinking, "yes, I'm doing well...I'm beginning to embrace life and coming to terms with the many changes that have taken place".  But, there is another part of me, in the back of my mind thinking..."you were here before and look what happened".  I am trying very hard not to dwell on it but it's there hovering over me like a gray storm cloud waiting for the storm's torrential down pour to come or waiting for the sun to push it away, opening the skies to yet another month or two, of living life.

So my name is called to have my vitals checked and to have my blood drawn.  I sit there and think..."is this the day my blood and my body betray me...or is this a day I can go home without all of this burden on my shoulders".  I exit the room and wait, yet again, to be called to see the doctor.  I try to keep myself busy by messing around on my phone or reading on my Kindle.  Then my name is called, I get up with my husband or mom and dad, and walk to the room, where we have to sit, yet again, and wait.

The doctor walks in and I'm sitting questioning whether I should look at him...should I look at his face because I will know the results...I will know it's good news or bad news.  Obviously, my last appointment was good, so what will it be this coming Tuesday???

After the doctor discloses that everything looks good and all the numbers are within the normal range, the others in the room let out the air, that we all have been holding in.  Although, mine is still being somewhat held in.  As I sit there, I question why can't I just embrace this moment right now.  This is all good news.  I should be hugging and smiling and rejoicing with the rest of them.  But, I just can't seem to be there "in the moment".  Is this typical for someone who has experienced a relapse?  I know with my initial diagnosis, there was that fear of relapse, but it wasn't as significant as it is now.  And, I'm not saying that I obsess over it.  These thoughts usually occur a week or two before my appointment and the day of I'm a complete mess!!!  I really want to get passed this, its just I don't want to be blindsided like I was before.  Like I said in an earlier post, my relapse was more of a shock than my initial diagnosis.  It was harder to come to terms with and accept.  So, if it can happen once or twice, it can happen again.  But, even though I don't allow myself to dwell on it, doesn't mean that fear isn't there in the back of my mind.

So, here I am going through the motions of life as the dreaded appointment lurks just around the corner.  It will either be a great day or something I just really do not even want to face.  I just need to keep telling myself..."it's out of my control...what will be, will be...and I'm one stubborn girl, and Iwill just keep fighting"!!!

Image source: http://www.tiedribbon.com/search/label/getting%20real

What Does That Mean...GVHD???


GVHD...what is that???

When speaking about my bone marrow stem-cell transplant, I usually get this reaction when I mention GVHD (Graft vs. Host Disease).  Basically, its my body fighting the donor cells and it is exhibited through a variety of symptoms.

GVHD is very common in transplant patients.  I have definitely dealt with a lot of it!!!  My GVHD seems to go in phases and I'm hoping some of those outbreaks do not return any time soon or really ever!!!  I can handle some of it but not the more extreme cases I had had.

Some forms of GVHD I have experienced has been nausea/vomiting, skin rashes (or burns), gastrointestinal issues, asthma/lung issues, and dry eye.  I really hope that's all I know and the symptoms I experienced early on post-transplant, I'm hoping and praying I do not have to experience again.

Most of the time, medication, is used to address these symptoms and the majority of the medication is steroid related.  So, not only have I had to suffer with the GVH symptoms themselves, but the side effects to the medications, which has included, weight loss/gain, the typical steroid "moon" face, eating or lack of.  It's been a total roller coaster of emotions and side effects.

Every transplant patient I'm sure has experienced some form of GVHD.  Noone experiences the same thing and each experience can be brief or long-term.  There really is no way of knowing how long I will have to deal with these side-effects.  It could be a few months, years and even a life-time.  And knowing that it may never end, can be very frustrating.  I guess it's just a matter of learning to live with and knowing that there is a possiblity of it just ending or lasting forever.  And the quicker, someone can come to terms with it, maybe, lasting forever, the sooner of getting your life back.  Because here again, is yet another thing that can't be controlled.  So why worry about something that may or may not go away. 

I think one of the biggest struggles for me has been the "sun" issue.  I really have never been one to lay out and soak up the sun.  I have never been in a tanning bed and, ususally, the times I have ever been to a beach was spent under an umbrella.  I have never tanned well and always seemed to burn.  But, at least, I had a choice of whether I wanted to sit out in the sun for a little bit, whether it be at the beach, a picnic, party, etc.  I still had that choice.   Now, I don't.  I have to seek out the shade wherever I am.  And if there is no shade, I need to create my own, either by using an umbrella, an umbrella tent, or layering up in clothing.  This really has not been very much fun.  Sometimes, it can be quite chilly in the shade, and I crave the warmth of the sun's rays.  But, it's either hiding out in the shade, or risking a GVH flare up.  My doctor had informed me that not only can the sun cause skin issues,like rashes/burns or even melanoma, it can also cause a GVH flare up.  And, that flare up could be any I have experienced before or maybe something new.  I have been told to keep lathering myself in sunscreen, even during the winter.  I need to be aware of how much skin is exposed in the car and I also need to protect my eyes by wearing sunglasses when I'm out, even on cloudy days, because the sun's rays still penetrate through the atomosphere and clouds.

I guess I never really thought how much we are exposed to the sun.  I do need to be more diligent in applying sunscreen.  I just hate that heavy, oily feel.  So if anyone can recommend a skin-sensitive, oil-free sun lotion, please let me know.  I need to protect myself from any future GVH issues and any bouts of possible melanoma.

I have said, in my previous blogs, about all the changes that one faces when dealing with a bone marrow stem-cell transplant, and as you can tell, there are many.  It's all about taking things day by day, because if you're constantly looking at the big picture and trying to figure things out, you're going to make yourself crazy.  And, I have had many people say to me "at least your alive".  Well, I hope now, some of you can see that it's so much more than that.  Yes, I am very thankful to be alive, but it's about coping and processing all of these changes and restrictions.  It's a different life from the one I've had before and this won't be the last of the changes.  We are forever evolving as human beings, internally and externally.  I'm just coping and processing this current journey and I'm hoping that the future won't be so complicated, but if it is, I will get through it, just like I am now!!!

Image source: http://blog.logmycalls.com/Portals/155740/images/what_is_it-call-tracking.jpg

Friday, October 19, 2012

I'm NOT the Energizer Bunny!!!



I'm definitely NOT the Energizer Bunny!!!  I never was nor will I ever be, hopefully I will regain my strength and stamina that I had pre-cancer and transplant.  After close to three years of hospital beds/rooms, tiny apartments, and seclusion in the home, I'm finally able to get out and socialize with the public.  But with that comes a lot of anxiousness.  Anxiousness of germs, and anxiousness of not having the energy to do the things that I used to do.

All that time being secluded and being on medications that totally wiped me out, my body lost a lot of its muscle mass, and its strength. It was very hard to remain motivated and exercise when you were nauseous all the time and just plain tired.  The hospital encouraged patients to walk laps around the inner air-filtered hallway, but that got old quickly.  They tried brightening the hallway with bright pictures and photos of inspiration but those got old too. I did just enough activity to maintain some strength to prevent any significant atrophy from settling in.

Within this past year, I began feeling more strength and thought I would return to Curves Inc. to rebuild the muscles and strength that I lost.  I was very motivated and excited to start this all again.  However, as soon as I began, I realized it was a lot harder than what I thought.  At first, I felt like a failure because I wasn't able to do the amount of reps I used to, and realistically, I knew why, it was just yet another change.  I can be very stubborn when it comes to things like this, so I began to push myself to keep going, knowing that my strength will come back.  So I became motivated in overcoming this obstacle and another obstacle surfaced.  I began noticing my breathing seemed more depleted and I began coughing a lot when I became active.  Whether it was exercising, taking a walk, or climbing the stairs.  It seemed like anytime I became more active, my breathing was affected and I was constantly coughing.  I spoke to my doctor regarding this and it has become an issue of GVHD of the lungs.  GVHD is graft vs. host disease, where my body begins to fight the donor cells.  GVHD can present itself in numerous ways.  I have experienced nausea/vomiting, skin rashes, sensitive skin, gastrointestinal problems, dry eyes, and breathing issues.  It seems the only way to treat most of these issues are with steroids which led to a lot of weight gain and the typical "moon face".  I will discuss GVHD more thoroughly in my next blog.

So, currently, I'm on an inhaler and asthma medicine to address this new issue.  It has helped some but not entirely and can be very discouraging.  I gave myself a break from going back to Curves to give some time for the medicine to kick in.  Well, now its time to get back into it.  I'm not going to go into it with false expectations like the last time.  I'm going to do what I can and not beat myself up on what I can't do.  At least its something and better than doing nothing.

 I have noticed that I can go, go and go for a few days, and then, WHAM!!! It all catches up to me.  I need a day to recuperate.  It was very difficult over the summer because it seemed we were constantly on the go and it even seems that way now with school.  I should be taking advantage of the kids being in school and cleaning the house and keeping things organized, but I feel little energy and motivation to do so.  Housework can be difficult because I'm very limited on what cleaning products I am able to use.  There doesn't appear to be much in our area for organic cleaning supplies.  I have heard Lowe's may carry some and I will need to look further into that. It's also difficult because we live in an old home with steep stairs to the laundry rooms and to the second floor.  I'm wiped out by the time I get to the top of the stairs, and that's even when I'm not carrying anything, like a basket of laundry or the vacuum. 

The kids have needed to adjust to my lack of energy as well.  They were able to understand it while I was sick because I was in and out of the home/hospital.  But now, almost a year and a half of being hospital free, they think that I'm better and everything should be like it was before.  I try to remind them of what I went through and the affects it can have.  I explain that it will get better someday but it will take time, and that I'm still on some medications that will prevent me from gaining that strength back right now.

We're all being patient, taking it day by day.  I know it will get better.  Eventually, I will be able to run around, exercise, and play, or even do simple household chores and not be worried about being winded, or coughing or my heart palpitating like crazy!!!

It's just a matter of one day at a time and dealing with the now rather worrying about a future that no one can control.  It's living in the moment and taking advantage of the things you can do!!!




Thursday, October 18, 2012

What the "Eff" ?!?!? Chemo Brain Does it Really Exist!!!!!!



"Don't Forget"...this should be my daily mantra!!!

I haven't always had the best memory, but this is ridiculous!!!!! 

I was just getting ready to leave to have lunch at school with my son and went to get my wallet.  I spent 15 minutes searching the house from top to bottom and could not find it.  Then all of a sudden I remember putting it in my daughters book bag after having lunch with her yesterday!!! And this is just one instance of this.  I can't even tell you how many alarms I have set on my phone to help me remember things.  It's really becoming quite a nuisance!!!!

I haven't taken the time yet to discover if "chemo brain" is an actual phenomenon or its, no pun intended, all in our heads.  It seems that whether its long-term or short-term, I can't remember a damn thing anymore.  It can be something as simple as one of my kids stating they want something to eat and, if I'm in the middle of something, I'll tell them I will get it when I'm fninshed or just give me a minute.  Well, needless to say, that minute turns into five, ten, sometimes even 30 minutes to an hour.  I realize after they come to me asking again that I needed to get them something to eat. 

It's really a wonder I haven't burnt the house down.  I have left candles burning when I've left the house. I have actually forgotten about pasta sauce on the stove which burnt to a crisp and ruined my plastic ladle that I left in the pot!!!

Conversations with friends and family I can hardly remember.  My husband just reminded me yesterday of going to a Steeler game at the end of the month and I have no recollection of having that conversation!!!  I'm sure its just as frustrating for them as it is for me.

I really don't want to do much research in what the cancer world calls "chemo brain" because the less I know medically out there the better for me.  I tend to worry too much over medical conditions and the only information I really know about leukemia is based on my doctors and the hospitals information they have provided us.  Sure, maybe I should take more of an active role, but like I said, I tend to obsess over those things and I think it would be more unhealthy to know every little aspect, good or bad, and just to continue with the "need to know" basis.

Who knows, if I did do some research, maybe I would forget what I read...Hahaha!!!

Seriously, though, does anyone know much about this or has experienced it themselves?  I know we all forget things from time to time.  But this is something chronic that I experience daily.  It can be little things as to where I placed something, to important dates or phone calls.  At least I haven't forgotten to pick my kids up from school, but that's what my timer on my phone reminds me to do. 

And I even have my online calendar synced to my cell phone to remind me of appointments!!!  It is so useful and I'm so thankful for that feature.  It's so convenient if I'm somewhere and need to schedule an appointment.  When I enter the information on the calendar, from home or on my phone, it automatically syncs it to the other device.  So, this is one way for me to keep track and a tab on things. 

But what do I do for those little things, like where I place something or put something somewhere for safe keeping?  I know we all have done it but this is beyond comprehension as too how many times it occurs.  I started a "chore basket" for my kids.  If they leave something out it goes in the basket and they have to do a chore to get it back.  Maybe I need to start a "chemo brain" basket.  If I need to put something away, I can just start a collection in the basket and when I have the actual time to put things away in their rightful spot, I will remember more easily.  I'm open to hear any suggestions!!!

Stay tuned for my next blog...hopefully, I'll remember to write it!!!  Hahaha ;-)

Image source:
http://www.doyouknowcancerblog.com/wp-content/uploads/2010/10/iStock_000011818352XSmall.jpg

Hi Honey...I'm Home!!!



"Hi Honey...I'm Home"...this phrase has been running through my head for awhile now. I'm thinking after the chaos of the past few years, it feels like I'm finally home.

Before, it was like...ok...we're married...we're husband and wife...we have two beautiful, healthy children...we have a house...a home...baseball/football and cheerleading practice...we have homework...and vacations/trips planned...then in all a matter of seconds it completely changed.  Cancer completely changes and uproots lives!!! Our roles completely changed.  Whereas before cancer, we were close to equals, sharing responsibilities regarding our home, family, and finances.  Then it all changed and became solely my husband's.  He was now the sole caretaker and even, at times, the sole caregiver of the children and me.  Not only was my world thrown into a whirlpool of chaos but so was his.  He now had to fulfill both roles as mom and dad.  He had to stay at home, to provide some kind of normalcy for the children, while his wife was two hours away, possibly dying.  He may have possibly felt torn as to which direction to go...thinking he needs to be at home with the kids, pay the bills and continue to work to provide for his family...and on the other side, possibly thinking...I have a wife...who is possibly dying and I'm here at home.  How does a spouse choose???  Which do they decide???  I couldn't even imagine that internal battle and how much havoc that could have on someone internally, emotionally, mentally and even, physically.  It would affect all of your being.

I know it was very hard for me having him so far away.  Two hours may not seem all that much but it truly is.  Its very difficult to stay connected because the time we do have together was during visits at the hospital or weekends with the kids at the hospital apartments.  There was very little time to connect emotionally/intimately, it was all about surviving.  And all the visits and communications, whether in person or by phone, were all dependent upon how I was feeling.  There were many times where I couldn't get out of bed, where I slept most of the time due to natural fatigue or medically induced.  It was a very difficult time for our marriage.  And I'm not saying that we were close to divorce or anything, it was just a time where it was hard to focus on the two of us as husband and wife and to deal strictly with the things that were affecting us.  It was a time for survival for the both of us.  I was trying to fight death and survive and he was trying to survive with the financial responsibilities for the family but also as caregiver for both the children and me. Sometimes, it seems my role of fighting cancer was easier than what he had gone through and all of those responsibilities lying heavily on his shoulders.  He is a great man that didn't give up.  He pushed through and did what he needed to do.  I have so much respect for him and how like me, he fought like hell, for his family!!!

So, now is the time for reconnecting. Sometimes, its like we're still living in the survival mode.  Passing each other and not really communicating the way we did before.  It's a work in progress and we are making every effort to be more aware of that fact.  We're communicating more and sharing more of the responsibilities again.  Unfortunately, he still carries more responsibilities due to my lack of energy and due to my continued restrictions due to my health.  It's frustrating for both of us and we will figure it out.  It will truly get better. 

I really am thankful for our marriage and the trials that we have been through.  Those trials have made us stronger both as individuals and as a couple.  Recently, within the past year, someone gave me a statistic of 70% of married couples do not remain married when a spouse has gone through a disease/sickness.  I couldn't believe the percentage. It truly makes me thankful for having such a supporting husband!!! He definitely took our vows seriously and is so much more a husband and man for his caring and protective nature!!!

This is dedicated to him because even though he says I'm his hero...HE TRULY IS MY HERO!!!  He didn't give up...he didn't walk away...he fought for his family and because of his strength...we will be living those Golden years together with our children, grandchildren, etc.  I Love You "I"!!!

Image source: http://upload.wikimedia.org/wikipedia/en/4/4a/Hi_Honey_I'm_Home_(logo).jpg

Tuesday, October 16, 2012

Why can't mom do this anymore....Are you sick again???



"Cousins"
My Son and Daughter
(with their younger cousin)

Cancer isn't just an individual thing.  Cancer affects all who have a relationship with the person suffering from the disease, especially the children.  Adults usually have acquired the coping skills to help them through those difficult times, but children, depending on their ages, haven't fully learned what those coping mechanisms/skills are.  Whether your a parent, grandparent, aunt/uncle or even a friend, each one of us tries to be there for the children.  Some of those individuals plan many activities to keep them busy, so that they have little time to think about the current circumstances, while others sit and discuss openly what is going on and answering questions that the children may have.

When it came to our children, my husband and I, did not keep much from them.  We both explained to them, on a level of their understanding, what was going in and what they might expect and will expect.  As a parent, it was one of the most difficult things to do.  That is one of the last things I expected I would ever have to explain to a 5 and 7 year old child. 

There were many tears...many hugs and kisses.  I can't even fathom the number of phone calls and Skyping that took place.  Thank God for technology.  Especially Skyping, it really seemed to help the kids to be able to see me and see that I'm okay versus just hearing my voice over the phone.

The actual visits at the hospital and the apartment in Pittsburgh were very difficult.  I was so excited to see them but also very anxious.  My anxiety level would be through the roof because of possible germs and their high energy was very emotionally and physically draining.  I was very exhausted after their visits.  Many times I had to wear a mask because of germs.  I couldn't hold them and just snuggle with them and reassure them everything would be okay.  First, because of possible germs and my nonexistent immune system, and secondly, how could I promise something that I didn't even know if I could survive or not.

We, as parents, are suppose to provide for and protect our children.  I felt helpless.  I felt myself as a failure as a parent.  I kept thinking "this is so not fair...why do they have to go through this...why do they have to witness this...how is this going to affect them now...how will this affect them as they continue to mature and become adults...will this experience help them to understand that life isn't static, its constantly changing, sometimes for the better and sometimes not so good.  Other times I thought...will they shut down...will they bottle this inside...will they become resentful...etc.  It was such a scary time for me in regards to what they were thinking and how they may be feeling. At times, I would explain to them that if Mommy did go to heaven, its because God needed her there.  And that just because Mommy went to heaven to be with God doesn't mean that I don't care for and love them.  I will always be a part of them and I would always be in their heart.  I didn't want them to think that I left because of them or something that they think they may have done. I needed to reassure them of how much I love them and how proud I am to be their mother.

I remember so many tears and struggles when it was time for them to leave after a visit.  I could hear their cries as they left the room and walked down the hallway.  I remember a day that I was able to go outside and enjoy the warmer weather and we were all outside enjoying being with one another out in the open air rather than being couped up in a hospital room.  They had been there for awhile and it was time to go.  I remember my dad loading them into the vehicle and both screaming and crying that they didn't want to leave.  Both of them stating they wanted their mommy.  My heart was shredded and torn.  I was helpless.  I didn't even know what to do or say.  I wanted to reassure that everything would be okay, but I couldn't.  All I could do was embrace them with hugs and kisses and let them know how much I loved them and was so proud of them.  Every departure I tried to leave them with something positive, because I didn't know whether I would see them again.  I had to let them know how grateful I am to have them in my life and how proud I am of them. 

Even as I sit here now reflecting back on those days, I become so angry that they had to experience such an ordeal.  It still affects them today.  Even though it will be two years in November since my transplant, I still have days that I'm not feeling well.  My son will usually say "Awww great...you sick again...why can't you do _____with me".  I try to explain that even though much time has passed that I'm not 100% better and that I may never be.  I explain that the cancer could come back but that the doctors say I'm doing really well. 

When I make my monthly appointments to Pittsburgh, my daughter exhibits more anxiety than my son.  During the whole months of treatment and living away in Pittsburgh, my daughter, who is the youngest, held a lot in.  She would say "I will be strong...I won't cry".  She said this so many times, while my son, showed his emotions and cried if he wanted to cry and became angry when he wanted to be angry.  We were so worried about how differently they were coping with everything, we even had them go to a therapist, who stated that for everything that is going on, the are remarkably coping well and not to worry because they are coping in different ways. 

So now, my son is older and seems to be doing much better.  My daughter, however, has her good days and bad days.  Finally, when I was able to be home full-time, she was glued to my side.  She wouldn't go anywhere or even stay anywhere.  She used to love to spend the night at her grandparents house but she couldn't do that or even visit them unless I was there.  After about a year of being home, she was able to spend a night or two and than would regress for a period and then begin to become less attached to me.  This past summer, we were at the community pool and she, her brother, and my mom and sister-in-law were in the pool swimming enjoying the hot, humid day.  I was sitting under a pavilion talking to a friend of mine and all of a sudden my daughter comes up crying, saying she doesn't want me to go to Pittsburgh again.  I really wasn't sure what was going on and why.  So when I asked her what happened she stated that she just heard a song that her, and her Dad and brother would listen to on some of their trips to Pittsburgh and it made her think of those times which made her sad and scared.  It really hit home on how much this has impacted her.  It was this stupid song that triggered this horrible memory for her.  And now, she won't stay anywhere again.  She has stayed at a friends house but won't go to her grandparents or anything.  I think its because she associates her relative homes as places she went when I was sick. 

So all I can do now is let them both know how much they are loved and how proud I continue to be of them.  I still can't promise tomorrow...but I can promise today...and we need to continue to show love and respect for each other because you never know what tomorrow will bring.

Monday, October 15, 2012

Today's Horoscope

Capricorn Oct 15 2012
You are a very intuitive person, Capricorn. The problem, though, is that you probably don't see yourself that way. There have most likely been countless times in your life where relying on your intuition would have gotten you through and helped you to succeed. But you chose, instead, to rely on more traditional ways of getting things done. Now, though, you have a very strong feeling about something. Should you trust your instincts? Absolutely. Should you follow your heart? Yes you should! Ignore that overly conservative side of yours, and go with your gut. -- Copyright © DailyHoroscope.

Love this!!! This is PERFECT for where I'm at right now in my life!!!!

I don't live life by what something says but as a tool to looks at things from a different perspective!!!

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".

Image source: http://www.designyourway.net/diverse/3dtypo/WHO_AM_I__by_SpEEdyRoBy.jpg?d3d3c2

What is around the corner???



So...what's around the corner??? That's the big question!!! Not only was I given a second chance with life...but I was blessed with a 3rd chance and, obviously, I don't want to waste it!!!

The first thing I was questioning was my job.  Did I really want to go back to the stress of the job itself...the stress of the environment...and the stress of attempting a professionalism that was hard won in the public's eye??? I wasn't sure because I had been with the Agency for 12 years.  That was my life and felt that that is all I knew.  So, after speaking with my Dr and with his reluctance he did approve for me to go back part-time.  I needed to do that to find out whether I should move on or not.  Honestly, I think I even knew that first day back at work that it wasn't for me anymore.  I realized that my life has drastically changed  due to cancer and that those changes included my job. My heart just wasn't in it and my body just wasn't ready.  My first week back I missed two days of work because I was already ill.  I tried to stick it out but after three weeks and not being able to work a full week it was time to turn in my resignation.  So now, my slate is wiped clean. I feel I have this fresh start and so many possibilities.  I have thought of many different things that I may want to do but I haven't found that 'it' job.  Although I'm beginning to realize it may be something related to cancer and working with people who have been diagnosed with cancer.  I started pursuing the ideas of a county support network and I just need to get a plan in motion and begin speaking to right people. 

In the mean time, I may have a part-time job that will help assist me in fulfilling my vision of what I want to be doing.  I am definitely a person that has the innate quality of wanting to help others, so what better way than to speak to others about my own trials with cancer/transplant.  Connecting with others and sharing our experiences can be very healing and therapeutic.

But my career isn't the only thing that has been affected by bouts with cancer.  Not only has this experience affected my outlook on my beliefs and perceptions of what I want out of life but my relationships as well. And its not necessarily effected them negatively, just differently.  Some people have told me that they've noticed a change on how I look at things, interpret them and even react to them.  And then there are the people that really haven't seen that big of a change.  And of those individuals, they see little changes but nothing to extreme and really don't think too much about it because its to be expected.  For those people who have seen the change, I need to realize that this is an adjustment for them as well, and as long as we communicate with one another, then everything should be fine...right?!?!

So, now I'm in this place of trying to discover  my wants and desires.  I'm trying to discover what it is I want to do next and there are so many possibilities.  Its just trying to make that next step that can be frightening and once I'm more able to discover who I am...than maybe that next step will be easier than I think!!!  Which leads me to my next blog..."Who am I"???

Image source: http://www.evansink.com/page/2/

Sunday, October 14, 2012

"Life Happens" video by BrandonandLeah

Must listen to this song by Brandon Jenner/Leah Felder...its called Life Happens and it so relates to me and how I now look at life....its so inspiring...Enjoy!!!



http://www.youtube.com/watch?v=Kyz6RiU6YQQ&feature=share&list=PLjjCtzDFv8x9mj0CXKHFChq5f_cy7u60H

______________ Cancer Awareness Month

TOO MANY CANCERS!!!

Why do we need to feel as though we should segregate something as significant as cancer...this is Breast Cancer Awareness month...and everywhere I look I see pink this...pink that...and sometimes it is nice because pink is one of my favorite colors...but why should any one cancer get more focus than another. 

Cancer is Cancer...at least to the people that have experienced it...even though it comes in different forms and occurs in different places...it effects us all the same...doesn't it???  So why should we segregate it???

Obviously, I care about anyone who is affected by any form of cancer.  It is something that literally turns your world upside down and inside out.  Everyone hears that they're looking for the cure to cancer...but really is it just one thing that will cure all forms...realistically, probably not.  So than who decides which cancer to focus on...is it Breast cancer because of what statistics saying is the leading cancer to take lives, or Melanoma???  I say "Bullshit"...just because there are more percentages of one cancer vs the other shouldn't lessen the cause for other cancers out there.

I know, I know...your probably thinking..."hello, we do Relay for Life, which encompasses all cancers"...and I get that but I'm tired of some of these months that are directly related to one cancer...obviously I can't speak for everyone but sometimes it feels as though the cancer I was subjected to is somewhat minimalized and the trials that I went through, that my family went through...hell...it may just be my issue...but I'm speaking it and saying it out loud!!!

I'm not trying to say that we shouldn't raise awareness on specific cancers...I'm just stating that there are other cancers out there and maybe we can start raising more awareness of the lesser known!!!

If anyone reading this who has experienced cancer whether personally, or watching a family/loved one suffer...please comment...is this just me being self-absorbed or is this a pet peeve for others too??? Please comment...I would love to hear them!!!

Me...Control Issues....Yeah, Right?!?!?



As I continue on this journey of self-discovery after cancer/transplant, I reflect on my life prior to cancer/transplant, life during, and obviously, life after and I'm realizing that, yes, I definitely have control issues...but so does everyone else.  We, as a human being, need to have a control of something in our lives...and realistically, the only thing we can control is ourselves.  Oh sure, we try to extend that control to other parts of our lives, but really has it ever really worked??? No, it definitely, hasn't. 

So to reflect on my life prior to cancer, I was one, big, walking, stress ball of emotions!!!  It was definitely taking its toll on my body...no wonder it shut down and allowed cancer to take control.  I definitely was not the most healthiest person...I was a supervisor for Children & Youth, which is enough stress in itself...seeing abuse/neglect, taking custody of children, dealing with uneducated people, some addicted to alcohol/drugs, mental disorders, lack of motivation, pure ignorance, etc (need I really go on)...and that is just dealing with the children and families...that doesn't even include the toxic environment of the work place...never knowing who is stabbing you in the back the moment you turn around...than dealing with the ever changing laws and regulations and paperwork that if not shredded and recycled would literally surpass the highest mountain top...and after dealing with all of the office crap...you have the image of the Agency that is not favored...and trying to earn the respect from the community, Court, etc.  It was pure hell for someone who wanted to be respected and tried to present a professional image at all times (but I did have my moments, hey, we're all human and we all have our breaking points)...right?!?!

Another big stressor was my co-dependent nature...I was always trying to help someone with an issue they were having...I always wanted to fix things for others...trying to let them see the light...and the error of their ways...and I was so ignorant to believe that I could help change someone for the better...it really was a false sense of reality...I mean, really, why did I think my way was better...just because something worked for me doesn't mean it should be that way for everyone...I definitely learned my lesson there.

And on top of all that work stress and wanting to fix other peoples problems, I was a smoker, which we all know the outcome of smoking.  But, unfortunately, its an addiction that I did allow to control my life...I guess in a weird way that was the one thing I could control...no one was going to dictate whether I could or could not smoke...so due to my innate stubborn nature, I smoked all of those stressors away...or at least I thought I was.

Which leads me to the cancer/transplant...I still remember being told...I actually was away in Lancaster for a work conference with one of my best friends/co-worker and received a call from the Dr.'s stating they needed to see me...I knew something was up...especially after waking up that morning and showing my best friend the 7 inch diameter bruise on my back that came from nowhere...I wasn't thinking cancer...I just knew something was wrong...so I called my husband and he had to travel to Lancaster and bring me home...so we got home, went to the Dr.'s and was told you may have Leukemia...the Dr. was so withdrawn when delivering the news...I was completely numb...I shed a few tears but I was so much in shock that I really didn't know how to react...than after that I lost complete control over my life. 

Imagine yourself standing in the middle of a pool...and remember how when you were little you and your friends would go as fast as you could along the sides in the same direction to make a whirlpool...that's exactly what it felt like...except you were in the middle and all your friends, family...hell, your entire world, is spinning all around you...you try to reach out but the current is so strong you can't stop it...you can't control anything...your being told this is what needs to be done...you need to take these 100 different medications...you need to allow these toxins into your body to kill the cancer, as well as, risking damage to your internal organs...being told you need to do this because its that or you die...and you have to do all this because you need to be here for your husband, children, family and friends...talk about freaking pressure!!!  Children & Youth was a cake walk compared to this!!! 

So, in the world of a control freak, this was absolute hell.  So, when in a world of no control, what do I do???  I shut down...I withdraw...which then upset those people around me...they don't understand why I don't want to talk...why I just want to lay around and self-medicate...and all I can think is...really, what do you expect...I have no control over anything in my life except my emotions and how I think and feel...and which really irritated me even more was the fact that because I was withdrawing the need to have the hospital therapist come and talk to me...I just wanted to scream...I wanted to yell and say "what do you people expect from me...I have cancer...I may be dying...and you think talking to some hospital staff who has never personally been through what I've been through is telling me how I should think and feel"...really...it was a joke.  I know everyone was just worried and their intentions were meant well...but at the time I was just frustrated with everyone and everything...so amazingly, I fought through it went into remission, and began living a new life and new way that really didn't involve much stress...other than work, of course.

So, I was embracing this second chance at life.  I wasn't going to allow much stress in my life...I decided to be more carefree...not react so quickly or negatively to something...because the one thing I had learned is that the only control I have is over myself and how I react to the things around me...and I can't be stressing over things that are completely out of my control...so I was living and enjoying life...actually being happy...than it was ripped from me again...I noticed a few bruises here and there but nothing like they were before...I went to one of my routine Dr appointments and...WHAM...RELAPSE!!! WHAT!!! ARE YOU KIDDING ME???  SERIOUSLY??? BUT I'M HAPPY...WHAT HAPPENED...WHY???  I can understand the first time because my life was complete chaos...the second time around, was more of a shock!!!  I kept thinking...WHY????  I'm so happy...I'm living life...I'm enjoying so much more than what I have ever before...so why is this happening???

And yet again, I'm thrown into another whirlpool...but now I'm being told...stem-cell transplant is the answer...its that or DIE...well, of course, its a no-brainer...I have young children and a husband who needs me...family/friends who love me...I need to fight again...and damn this is it...I'm tired of all this bullshit...I'm beating this "effing" disease once and for all...because I have allowed cancer to control too much of my life...now I'm taking control back...I'm going to lead this time...and so this is where I am now...trying to gain control of my life...but looking at things more realistically.

Now, I'm looking at my life after transplant and trying to figure things out.  I'm definitely a person that has to think things through and tends to think and think and think...and come up with every possible scenario...which is why my blogs are so lengthy...haha...I have to look at every angle to come up with the best solution...and it all comes down to my own happiness and what I want...and as long as I fulfill my needs...without hurting others...others around me will see that happiness and hopefully, that happiness will reflect on others.

So, in conclusion, I have learned that the only thing I can control is me...and my happiness...and its up to others if they want to jump on board with me...and if they don't...it's their loss...I'm not going to worry about it...I'm going to keep living...and enjoy the time that I have because you never know what is around the corner...which will be my next blog...stay tuned!!!