#FeelAlive

Lately I have been beginning to look at the brighter sides of where I am today. Many of my posts speak of the trials that I have encountered since my diagnosis and stem-cell transplant.  And while I still want to keep it real, I also want to express my joy with Life. 

Recently, and quite fortunately, I was able to receive a free real-hair wig.  It has uplifted my self-confidence and has made me feel more normal.  I know the saying 'bald is beautiful', but it's not as easy for some to embrace. Especially someone like me who has always struggled with weight and a poor body self-image. 

Somedays, I feel like shouting how happy I'm here to be alive. I want to laugh daily. I want to be my geeky, book nerdy, techie self. And if anyone has issue with my quirky ways, then so be it. I love who I am. I love all those odd ball things about me because that is 'me'.

I'm embracing the newer things about me.  When faced with your own mortality, your outlook and perspective definitely changes.  And those changes affect how you approach Life.

Well, I'm approaching Life by the  #feelalive motto!!!   I hope many of you will do the same.  Don't be ashamed of who you are...Live, Laugh, Love, Feel Alive and Embrace Life!!!

Why, Why, Why?!?!

Ok, don't ask me why and don't even offer a lecture about the stupid thing I did tonight.  First, let me say that I have made it known for some time about losing my sense of smell which had also affected my taste, or lack of. I have been relating it to the numerous head colds I had over the winter. Now however, I'm not so sure.

Let me also say that since my stem-cell transplant, I would experience an occasional 'cigarette burning' smell in my nose. It didn't happen often and I just thought I had been around or walked by someone that had been smoking.  But recently, I have been experiencing this so-called 'cigarette' phantom smell for a few weeks and there has been no way, in that time, I have been exposed to cigarettes.

So, now you ask what stupid thing I did!?!? Well, I can say I 'Google'd' it. Ugh!!!!! Why would I do such a thing? It always seems to be said that you should never Google a health ailment or oddity because it could scare the holy shit out of you.  Well, guess what??? The shit has been scared out of me.  Basically, there are two occurrences of this phantom 'cigarette' smell.  One is parosmia: smelling something foul when nothing is around to actually be causing the odor and could be related to common hyposmia which is the common absence of smells.

The other causing factor is the one that has sent my anxiety into orbit. It stated that if someone begins to experience a more steady existence of this phantom 'cigarette' smell it could be cause for a much more serious concern in relation to a tumor of the brain or the olfactory nerves.

So, needless to say I'm freaking out.  Thankfully, I have already seen an ENT Specialist in Pittsburgh and already have an appointment for a CT Scan the first week in June.  I'm really hoping and praying that it isn't anything severe.   I know that you shouldn't stress about the unknown.  But when those gut instincts of 'knowing' something isn't right has proven to be true, which was to be my initial leukemia diagnosis and my relapse,  I tend to believe this could be a pattern and the diagnosis not so promising.

So now I'm going to be a wreck and asking those closest to me, to yet again, have some patience.  And I'm just plain ol' scared.

Pandora's Box

"We open this huge Pandora's box (of late effects of transplant)...."the leukemia may be gone, the patient has survived, but how do we get them back to normalcy? That is the challenge." 

- Madan Jagasia, director of Outpatient Transplant Program and chief for Hematology and Stem Berm Transplant at Vanderbilt Ingram

"Opening Pandora's Box"

http://www.vanderbilt.edu/magazines/momentum/2012/06/opening-pandoras-box/

After a rough start to the new year (2014) I have noticed an increase in complications with my health. I'm trying to learn and understand are these just normal occurrences, are they related to cancer, the chemotherapy treatments and stem-cell transplant or is it all a combination?

This article speaks to many truths post transplant. I referenced the above quote from the article because it really gets to the heart of the matter. But there is one thing about that quote that I begin to question - "how do we get them back to normalcy"?

I'm not sure anything can get us back to normalcy. The transplant community uses the term your 'new normal' for life after transplant. Dry eyes, blurred/double vision, lung issues, GI tract issues, tingling sensations in limbs, dry skin, mouth and nose, lack of energy and possible neurological damage to list a few is to be my 'new normal'? And I'm just going to have to accept this? I wish it were that easy.

It's all a complete mind f#ck. Each experience is personal to the person that has fought this battle. No two experiences are alike. Sure, we may have similar experiences and share common side effects but over all you still feel so alone in a community with a shared experience.

Where do we go from here? How can we learn to accept these complications whether they occur daily, or frequently or just occasionally?

It feels as though it has been one health issue after another. Feeling misunderstood, that I need to be thankful that my cancer is gone and look forward to the positive light. I really wish it were that easy, especially when everyday there is something that makes you feel like shit, or you can't catch a breath or even be able visually focus on something.

I know this is sounding like a 'poor me' thing but so what if it is.  Why can't I say or think it? Is it really that wrong to say or think? Maybe if I allow myself that 'poor me' thinking, I can allow myself to recognize my weaknesses and begin to feed and build them into strengths.

I'm hoping for more answers next week. And I'm just trying to find my way with this 'new normal'. It isn't easy but I know, at some point, I will get there. Because if anything I have learned about myself, I don't give up and it will be a fight to the end.

Image source: http://i.livescience.com/images/i/000/049/809/original/pandoras-box.jpg

Out Sick Again

It has been awhile since my last blog. I haven't had the energy or even the thoughts to put into the blog. I have been battling with congestion and a persistent cough for a little over a month. The congestion is so bad that I have no sense of taste and no sense of smell which has interfered with my appetite. My cough becomes so persistent that at times I lose my breath and become lightheaded, with many bouts of vertigo.  Sometimes I'm coughing so hard my eyes water and my ribs ache.  And most recently,to add on top of all this, I'm 100% pure exhausted. I become so tired I have a hard time keeping my eyes open and many times I'm out of breath.  I can't even climb the stairs without trying to catch my breath.

I'm on my second round of antibiotics. This round of antibiotics is completely different from the dosage I had a couple of weeks ago. I'm ready for warmer weather with the hopes of less sickness.  So far, 2014 has been a difficult year on my health.  I'm becoming very down and very frustrated.  And I'm just sick of being 'sick'.

Is this going to be my 'new normal'? Since my stem-cell transplant, my winters have been full of cold and flu. However, this year seems to have hit the hardest. I don't remember being this sick all of the time. I'm truly hoping and praying this is the worst of it and better are days ahead.

Image source:
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlYC86Vtk-GsVlFzCeSq-UtEFbDbwYjsnmGeUu5AIALkR_cBAbt8DQt1tJTEfGKNLamg7RdciLiWXGFVoZ6cf1v43JuOAd7VsLAiHuf9ixFZNxHBZI-qB_BD8U7zAi73KafjSzlv546_o/s1600/out-sick.jpg

What is Your Truth?

Some people live their life (their truth) based on the perceptions others. Some people believe in themselves and live their truth regardless of what others think. Some people are more loud with their truth while some others tend to be more quiet.

I have been enlightened on the truths of another. It has reinforced what I have already recognized within them. And the little bits of doubt that, at times, I allowed my mind to twist into something to make it worse than it actually was, has made those doubts all but disappear.

Discovering my own truth is just another part of this new journey post-cancer. I feel rejuvenated and more confident. It has made me look at myself and has me questioning "have I been honest with my own truths" What are my weaknesses? What are my strengths? What is my passion? How can I turn my fears into motivations to become the person I want to be, in both my personal and professional life?

This is another step in my journey of 'embracing my new normal'.  I have had some ups and I have had some many downs and I have been trying to make sense of it all. As each day passes, something new occurs that opens my eyes to the truth of the situation, or to the truth of an individual.  I want my truth to be seen from every angle.  The truth of the happy times and the sad times, the truth of my strengths and the truth of my weaknesses.  No one can tell you whether your truth is right or wrong. As long as you believe in yourself and embrace all aspects of your truth, only then can you be at peace with yourself.

Image source:  http://seekretreat.com/wp-content/uploads/2013/08/truth.jpg

A Simple Assignment

My daughter recently had her tonsils and adnoids removed. While at home recovering, my husband and I asked the school to send her schoolwork home so she wouldn't get too far behind. One of her assignments involved reading this short chapter book and answering questions related to the story.

I wasn't aware of this story, nor did I know that this was a true story until I began reading it with her. I never had a clue that I would become so emotional to the point where I had to stop to compose myself. Finally, I told my daughter that I couldn't continue. This was one reading assignment that I wouldn't be able to complete.

"Sadako and the Thousand Paper Cranes" is about a Japanese girl who was two years old when the atomic bomb was dropped on August 6, 1945.  Due to the affects of the atom bomb, Sadako developed leukemia. The book went on to describe Sadako's reaction and her family's reaction to her leukemia diagnosis.  It continues to explain the days in the hospital and the things she did and the emotions she felt and the physical pains and discomforts she faced.

Needless to say, it was just too much for me to bear and I was unable to continue to read. All of the emotions that were mentioned in the book were so closely related to how I felt while I was in the hospital. It was just so unexpected. Emotionally, I thought that I was dealing with things much better. But obviously, that isn't the case.

There are days and even weeks that can go by and, emotionally, I'm doing well. Other days something occurs and it triggers an emotion so powerful that I break down in tears. I felt bad when I broke down in front of my daughter. I want to show her that I'm stronger than that. But instead I felt like a failure.The story spoke too many truths and I realized I still haven't fully coped well with what I've been through.

This has been another reality check, in relation to my leukemia diagnosis and treatments. It has made me more aware of how delicate my emotions are regarding that period of time in my life. I can't allow myself to think of my emotional breakdowns as weakness, but as a part of the healing process.

I'm still healing emotionally, mentally and physically. I will think of those tears as a way of cleansing those difficult days and washing away all the negative emotions from that time in my life. And I'm hopeful that there will be a time when it will be a distant memory.


Image source: http://upload.wikimedia.org/wikipedia/en/1/13/Sadako_and_the_thousand_paper_cranes_00.jpg

Putting the Pieces Back Together

It's been awhile since I have posted anything. It has been a rough beginning to the new year. I have been reluctant to blog anything because lately my blogs haven't been all that positive. I hate to always be the "Debbie Downer".  I'm not asking for sympathy or for anyone to feel sorry for me.  I'm also aware that I'm not the only one in this world that is suffering from something.  I know there are others who are going through things that are much worse. But this is my way of coping and processing this 'new normal'.  I'm trying to remain strong so that I can become a better, healthier self.

As I stated earlier, my beginning to 2014 has been a rough one. In mid-January, I was hospitalized for shingles, which were excruciatingly painful and possible GVHD of the GI tract (nausea/vomiting).  I was quarantined to my room for a week.  It was definitely not a place I wanted to be. My experience was quite different than the previous years' hospitalizations while I was being treated for leukemia. I was on a different wing of the floor and the nursing staff was not familiar with taking care of stem-cell transplant patients which resulted with me becoming very stressed and put me in a slightly depressive state of mind.  Thank goodness it was only a week!

Things didn't improve upon my discharge and return home.  I ended up that weekend with the cold/flu with more nausea/vomiting.  I felt like I couldn't catch a break.  Thankfully, I have wonderful friends who I work for and babysit for, who allowed me the rest of the month off to recuperate.  Even though I had the rest of the month to recuperate, being the end of February now, I still do not feel 100%.

I currently have a head cold and a persistent cough that will not go away.  I've come to the realization since my treatments and stem-cell transplant, that this has become my 'new normal'.  My winters especially have remained consistent with the head cold/congestion and cough which depletes my energy reserves.  The lack of energy may have to do with the sleepless nights where I'm unable to breathe or I'm coughing so persistently I can't catch my breath.  Some nights I wake from a sound sleep because I'm coughing so hard.

I'm at a loss.  I have been hoping and praying that each new year will be the year that the tiredness, the ongoing colds/coughs, the lack of energy etc. will become less and less.  I know that even the most healthiest person gets a touch of the common cold/flu and has those days where they are worn out.  But my experience has remained consistent.  After three years, I have recognized the pattern and have come to the conclusion that my body still isn't strong enough.  It's not strong enough to ward off the common cold/flu.  It's not strong enough to handle a daily exercise regimen.  Any time I attempt something physical my body gives out.

I'm trying to comprehend all of this.  I'm trying to understand why after three years I shouldn't be more energized or more strong and healthy?  What is keeping my body from progressing?  The longest I have gone without some form of ailment, complication or side effect from the transplant has been at least two weeks, and this has occurred maybe 2 or three times since my transplant in 2010.

The cancer may no longer exist.  But just because it doesn't exist and its been three years since the stem-cell transplant, doesn't mean I'm all okay.  I continue to face battles daily.  Battles that are related, in one way or another, to cancer and the stem-cell transplant.  I'm not sure where I go from here or how to change things and make them better.  I try very hard to remain optimistic but even the most optimistic person has those days of feeling hopeless.  I just need to find a daily mantra to keep me motivated and keep holding my head high as I continue on this journey post cancer and post stem-cell transplant.

Image source: http://media-cache-cd0.pinimg.com/236x/9e/bb/6d/9ebb6da9fe107a5f10c2a9aef8d62faa.jpg