I Surrender

This is one of the most difficult entry's I have posted. It's so difficult because it's the blatant and embarassing truth of where I'm at in my life and how this whole experience has affected me. I thought I was alone. I thought I was crazy for feeling the way I do. But social media can have its benefits. I have learned through the many forums I have joined regarding stem-cell transplants that many of us share similar experiences and side effects. And the experiences and side effects I'm referring to are anxiety, depression and even PTSD.

I guess I'm not doing as well as I thought I was. I had my first anxiety/panic attack last week. This occurred at work. As soon as it happened and was over, I was embarassed. I was ashamed. And I felt like I didn't have control .

The situation involved a local news channel wanting to tape a segment about one of the programs the agency offers. My boss was out of town and it was up to me to do this. I instantly became nervous thinking of what I was going to say. Then those nerves led into becoming extremely warm, my heart started beating more rapidly and my chest felt heavy. I was in the room with three other people but I felt like I was so alone and also felt as if the room was closing in on me. And while all of this was happening, I was picturing myself being broadcast on TV. That I would be on display as one of those so-called 'freaks' back in the time when circuses or carnivals would  display them for other people's  viewing pleasure to either gawk at or make fun of. This is how I felt. Once I came out of my attack, I felt shame and embarassment. I felt as though I let me boss down and that I didn't fulfill my duty as a manager. I'm supposed to be a leader and lead by example and have confidence but I failed. I didn't do any of those things. Actually, my boss was on the phone with me and talked me out of the attack. She was very supportive that day and still is which I'm very grateful for.

But since that episode I realized I'm not as well off emotionally as I thought I was. I thought I was becoming more comfortable and coming to terms with my 'new' normal self when really I'm not. I feel as though I'm a freak out walking amongst the normal. I wear a wig to appear more normal but I feel as though people see through the so'called disguise and see the squinty-eyed,  near-hairless, overweight freak underneath.

It has been said that many symptoms of anxiety, depression and PTSD are quite common post Cancer. And that it could be a result of the combination of both the chemo and meds that are used, as well as, the whole experience which results in a lot of stuff.

So now that I've come to terms of my so-called underlying freak status, combined with my self-diagnosed anxiety, depression and PTSD, I realize I need to seek some professionsl intervention.

I don't want to live this way.  I want to finally come to peace with everything I've been through and with who I am now.

Image source: http://thefamilyfirstcoach.com/2013/06/i-surrender/

Reality Check...You Are Not Alone

As I read comments from the various cancer and stem-cell transplant groups I'm a part of, I am reminded how much I'm not alone. There is a comradery sharing the numerous side effects we have. Many are so similar and so different with all varying degrees of severity.

We share both the good days and the bad days. We all share the test of figuring out our limits and knowing that if you push too much, your body begins to shut down. And what were once non-exisistent or usually mild symptoms become something so much more that it limits you in one form or another.

I think of how grateful it is to be alive but it's hard to enjoy all the aspects when your limited in some way because of having a flare up of one or more of the begrudged gvhd symptom or symptoms.

One of the most reoccuring symptoms for me are my dry eyes. It can become so severe that I can hardly keep my eyes open and whatever I am doing at that time, whether for work or pleasure, it's a disruption. And it's not so simple as dropping a few eyes drops in the eyes and all is better. Sometimes it has taken an hour or more of resting my eyes before there is any relief.

Or there are those moments where you are having a good day and all of a sudden begin to smell a dirty ash tray or, as most present, an ongoing ammonia smell. It comes to a point where it's so powerful it becomes nauseating.

But most of all, the fatigue can be the biggest battle. My fatigue has gotten better but when I ignore the small signs and my stubborn nature wants to keep pushing, that's when the mighty crash and burn occurs. It manifests itself with extreme fatigue and nausea. I have left work because of it and would come home to sleep for an hour or two and feel much better after that nap.

And while I can go on and on with all my symptoms, I'm reminded with many of the support groups that I'm a part of, that I'm not alone. There are so many of us that are faced with these challenges daily. And we just need to keep moving on. It's scary at times to think that at some point one or all of these symptoms could mean something much more debilitating in life. And it's scary not knowing what damage has been caused by all of the toxic chemo we have endured. Some people say you can't focus on that or think about it but that's a lot easier said than done. When faced with living and dying and knowing you're alive because of the poison you allowed in your body. You can't help but be reminded of it when your body begins to weaken and shut down. And because I have had a relapse, the fear is even more real.

I try my best living and enjoying each day, but it's when the side effects resurface and gives a reality check not to get too comfortable.

Image source:
http://kdurham.com/site/2015/03/03/remember-you-are-not-alone-backchanneledu/

Happy re-Birthday To Me

November 30th was my 5 year re-birthday.

Image source:
https://i.ytimg.com/vi/8HsGxM_0-6s/hqdefault.jpg

Courage...

Image source:
https://trishborgdorff.wordpress.com/2013/07/29/courage-doesnt-always-roar/

Happy Thanksgiving

Every Thanksgiving I am reminded of my Thanksgiving five years ago. And ironically, this morning while watching the TODAY Show, I was reminded again. A segment was being aired about two young children who are siblings who was diagnosed with Acute Myeloid Leukemia (AML), the same leukemia I had. Throughout the segment it was stated that this type of leukemia is especially deadly and one that is a death sentence unless you are lucky enough to have a bone marrow transplant.

Hearing those words about AML basically being a death sentence caused another emotional storm. It brought me back to my consult with my doctor after I was told of my relapse. He had stated that because of my relapse, the next option will need to be a stem-cell transplant. I had asked him if I decided against the stem-cell transplant, what would happen? He stated that my remissions would be tougher and if I was lucky to become in remission, those remissions, would become shorter and shorter, until my death. I remember sitting there thinking, oh my god my remission didn't even last a year. And if the remissions become shorter and shorter, I may not even be alive in a year. I have no choice. I don't have time to sit on it because of my type of cancer. It rapidly grows and multiplies within the blood that this decision has to be immediate and it needs to be now. That's when I decided to do it. I need to have the stem-cell transplant. Regardless of the side effects, this is the only choice I have or else, imminent death.

This leads me to where I am now today on Thanksgiving. I had to prepare my body for the transplant. I needed to receive 5 doses of highly toxic, lethal chemo to assure my body is wiped clean of the leukemia cells. It was a scary time because some people refer to this chemo regimen as 'lethal' chemo. Some people don't make it through. So as I'm receiving these highly lethal doses of chemo over a 5 day period of time, Thanksgiving fell on one of those days.  I remember my husband and the kids being at the hospital, along with my mom and dad. It was around lunch time and the kids were getting hungry and one of the nurses had just walked in my room with a tray - my Thanksgiving meal or how I felt inside as what could be my 'last supper'. I told my family go ahead to the cafeteria and have their Thanksgiving meal together. I will be okay and could use the time to myself.  It was one of the most loneliest times ever in my life. But it was also time I needed. I remember looking around the room and thinking this is not the place I'm going to die. This will not be the place where my family sees me last. And here I am today, blogging about my journey.

My blogging has become so therapeutic for me. More therapeutic than any counseling or therapy. I can just let it all pour out about how I'm thinking or feeling on a particular day. If you've read my past blog posts, its very apparent the emotional ups and downs I have gone through and continue to go through. I am moving on with my life but my experience and my emotions about that experience have affected me so greatly this is the only way I can cope.

So in closing, I am so tremendously grateful for every Thanksgiving. I am not in a hospital bed, alone, eating my Thanksgiving meal. I am here spending it with my family. In fact, before cancer Christmas was always my favorite holiday, but since Thanksgiving has become mine. It's very personal to me and was an enlightening experience that day 5 years ago.

I'm so thankful for today and for my donor, Andrea W. Without you I wouldn't be here. God Bless and I wish everyone a most happy, grateful and thankful day!!!

Happy Thanksgiving!!!!


Image Source:
thanksgiving2015wishesimages.com

And So It Began

Just An Illusion

Tonight I learned another thing about myself. I thought I was comfortable in my own skin. I thought I was accepting who I am now. But what I've learned is that it's all been an illusion, more so to myself than anyone else. A few weeks ago someone had said to me that they didn't recognize me because of all the weight I gained and how big I was. It cut deep, in fact I'm still cut and bleeding from those words. I just want to stay at home behind closed doors. I feel ugly. I feel that my weight is out of my control. It's hard to get a handle on it  because of my meds and side-effects from stem-cell transplant. Because of the gvhd in my lungs my lung capacity is only at 48% which limits my activity level. Sometimes a flight of stairs winds me.
I need and want to lose the weight but I feel lost. I feel stuck. Everytime I try to make an effort, I fail because of some damn limitation. Add on to that that I'm partially bald. When my hair grows in its only partially. You can see more of my scalp than hair so I just keep it shaved. Even though the cancer is gone, the rest of me still feels stuck. Still in limbo. Some may think why can't she just be happy to be alive and that those are only small issues but they really are not. They are big. Being in remission doesn't mean that everything is all better and you can go back to living life normally. I will never have the life I once had. I can strive to get as close to it as possible. But Everytime I try there is yet another roadblock.
Tonight I attended an event for a couple.of friends speaking of a product that I could benefit from. And while everyone was speaking of their personal experiences I was putting all my energy into not crying. Everything they were speaking of is what I want so badly. It seems so good to be true but what if it doesn't work for me? Is this how I will be for the rest of my life?
Maybe my emotions are just out of whack because 5 years ago this would be the week I was being prepped for my stem-cell transplant. November 30th will be my 5 year anniversary or as they say in the transplant world, re-birthday.
I just thought I would be more ahead than I am now. Lung and Thyroid issues. Possible cataracts in both eyes. Fatigue and Memory issues. I just want a break. I miss feeling normal. This new normal is difficult to accept. But I don't have a choice. If I don't accept it than it could be worse with me no longer being here. I thouhht it would be easier by now. I just need to learn that just because I accept what it is doesn't mean I have to like it.