November 30, 2010 a New Beginning, a New Normal

November 30, 2010 at 10:45 pm it was officially...

10 Years 

120 Months 

520 Weeks 

3,650 Days 

87,600 Hours 

5,256,000 Minutes 

315,360,000 Seconds

...that I have been cancer-free and a stem-cell transplant survivor and warrior!🎗

Thanks to my donor across the ocean in Germany, Andrea W.  🙏🏻❤️ 

Graft Vs Host: a true story of life after

A fellow sct warrior shared this video he found and it’s spot on! It may be 20 minutes long but it’s a definite watch to those who may be interested and just want a peek at life after sct which is spot on for me. This came at a good time because I have another stupid symptom resurfacing. 😞

Video Link

https://youtu.be/DI0TOq_gHEY

The Weakest Link

This picture was taken a week before I found out I relapsed (in 2010). I thought I was living my best life. I couldn’t have had a better outlook after fighting cancer. I truly felt like I was on top of the world and that nothing could bring me down. I had the mindset that I faced the biggest evil and fought death and won to just have it all taken away from me in a matter of seconds. 

Let me back track to my initial diagnosis. I hadn’t been surprised. I had all the unexplainable symptoms and knew something was just not right. So I didn’t feel as if all the oxygen had been sucked out of me when I was told I had cancer. But I did feel that when I was told I relapsed. I felt like a failure. I thought I was strong. I thought that I could do anything because I beat cancer. 

And when I didn’t, a piece of me died. I wasn’t giving up hope for another chance. But that other chance had to come from someone else, a donor. Someone who had healthy, strong cells to fight the battle for me. It made me feel then, and even now, that I am the weakest link. That I am so weak I can’t even fight cancer which I literally can’t. My donor cells are fighting my cancer producing cells. 

Sometimes I feel like I’m just a host of another person. I may look like Dee. I may talk like Dee. But am I Dee? Who am I? Can I get her back, even if it’s just a glimpse? 

Cancer is a life changing thing. The battle is brutal. And when you come out of that battle, you do become someone new. It changes you. And how it changes you, is an individual thing. My initial victory I felt like champion. But after my relapse, I felt weak, and still do. I’m constantly fighting. Always in warrior mode. Not because I need to fight cancer but fight what cancer has left behind. 

And what it has left behind is someone I don’t even really recognize.

Every Day is a Blessing

Love this picture of my daughter from a number of years ago. I love the feeling I get from looking at it. 

It’s a reminder to greet each new day that is full of endless possibilities with joy and a smile; and to be thankful for another day to just ‘be’. ❤️

My Zen Place

My zen place is a place where I can recharge. 

A place where I can enjoy time with my husband and children, family and fiends.  

A place where I can enjoy the beauty of nature. 

And a place to even enjoy a good book. 

My zen place allows me to enjoy these snippets in time. 

It allows me to reflect on all things I’m thankful for. 

It allows me a moment to count my blessings. 

My zen place gives me hope for a better tomorrow. 

My zen place allows me to just ‘be’. 

Living in ‘My’ Moment

Some people say I need to enjoy life more and get out and experience life first-hand, not hide in my make-believe worlds. And I say what’s wrong with escaping to an alternate world where I can be someone else for a moment? If it helps me forget the ugly side-effects of cancer and chemo & stem-cell transplant, then that is my choice. It’s what works for me. It’s what makes me happy. It’s what keeps me somewhat sane (when I’m not having some form of flare-up). What may make you happy, may not be the same for me. I don’t judge you, so don’t judge me. 

Living in the moment for me is with my family, my friends who are rockstars and put up with my quirky introverted ways, it’s my books and enjoying the boat life on the water with my family. 

That’s all I need. That’s all I want in this thing called life. I want simple because the things I can’t control are chaotic enough and the last thing I want is chaos.

 #iwillbeme #youwillbeyou #livinginmymoment #cancersucks #lifeinremission #eightyearslater

Past, Present, & Future: Searching for Peace

The above quote couldn't be more accurate. My daily life consists of all three happening simultaneously, although, it's more fear and anxiety than peace.  Cancer is so much more than a disease. Cancer not only affects your body physically with its attempt at ending it's life, but the psychological damage it leaves in its wake is just as damaging, if not, at times, worse.

Tomorrow will mark the five year anniversary of my initial diagnosis (June 25, 2009).  As I sit here today, I'm still in just as much fear as I was that day.  When will it get better, when will this fear go away???

I try to give myself positive pep talks each day when I wake up. Even when I'm nauseous and tired or my eyes feel as though sand has been thrown in them, or I'm up against a limitation after the transplant that I try to search for the good, so I can maintain a balance.  But sometimes the 'fear', outweighs it all and the scales I'm trying to balance collapses.

No one knows this, until now, not even my husband, but almost daily I'm subjected to tears, whether it's a limitation from my stem-cell transplant,  or an event that triggers a memory of what once was or could eventually be.  Many times my crying episodes are in solitude (in the car, the shower, or even in bed in the middle of the night). Usually it's my mind going a mile a minute and I mourn so many thoughts and feelings or losses due to cancer.

Some assume that when the cancer is gone, it's back to living normally. I truly believe this is so far from the truth.  I came to the realization in the middle of the night when I couldn't sleep that 'fear' has taken ahold of my life.  I'm afraid to 'live'. I'm afraid that once I allow myself that happiness and joy of living that it will be ripped from me again. I'm beginning to see the consequences of my relapse and the psychological damage it has left.

I've been to counseling,  I've been to support groups, I've spoken to other survivors, warriors, etc. but I still haven't learned a way to cope with all that has changed or has been lost.  I wish there was a magic wand to take all the pain and fear away. What may work for someone else may not work for another.  I want my 'peace' in the living world. All I can do is hold onto my 'hope' that through this journey I will find the 'peace' I'm looking for and finally be able to 'live'.




Image source: http://definingwonderland.files.wordpress.com/2013/07/past-quote.jpg

Brain Fog, Chemo Brain...What is it???

Well, I've noticed many times this new year that my issues with 'chemo brain' have gotten worse.  But I've also noticed that the severity of it varies daily.

For example, I had been removing laundry from the washer and placing it in a basket so that I could place it in the dryer.  Please note that my washer & dryer are not side by side due to our house being very old (built in the 1890's) and the outlets are not near each other.  So due to the location of the washer and dryer, I needed to place the wet laundry in the basket so that I could easily transfer it to the dryer, which leads me to my chemo brain moment. After I placed the laundry in the basket, I added a dirty load to the washer and added the soap and fabric softner, chose the cycle of wash and water temp and started the new load of dirty wash.  Then I went upstairs to start a new chore in the house. After sometime, I heard a few beeps notifying me that my laundry was done.  So upon arrival, I went to the dryer and noticed there was no laundry in there. I had completely forgotten to add the wet laundry to the dryer.  I stood there wondering how could I forget something like that and how could I forget that I forgot about it.  I had gone to the dryer to fold and hang the clothes and I just stood there absolutely in a fog. This has been happening a lot lately. 

I am finding myself just standing or sitting somewhere mentally searching for some form of recollection of a specific incidence or attempting to recall a piece of conversation or even the amount of an item that I wrote a check out for and I can't remember!!!

Someone could tell me something and even after 5 minutes, I can't fully recall the details of the conversation, it's like I lost a moment or two in time that I can't remember.

Is this normal??? Are thsee bouts of chemo brain worse some days than others???
 

Thankfully, I visit my oncologist tomorrow and I will be able to discuss these concerns with him.  I just wanted to put it out there for others to read (and before I probably forgot) hoping to have some feedback from anyone else with similar issues after  chemotherapy.

The list could go on and as to the things that I forget and I'll save that for my doctor.  But if this is common, then I'll just have to figure out how to adjust to this 'new normal' of intermittent lapses in memory and hoping that this brain fog, forgetfulness,  lapses in memory will be 'forgotten' and a thing of the past.

Image source: http://maryhardy.com/?p=1891

New Beginnings...New Adventures

I decided to begin my own blog. I'm sure there are hundreds and thousands of blogs out there involving people that have personally experienced cancer and/or stem-cell transplant due to a cancer.  I'm not trying to be different or try to discuss anything new.  I'm just trying to process how I have been affected by the dreaded "C" word and if by blogging about it inspires or even helps someone who is going through it or has been through it and  toknow that they are not alone (in how they are thinking and feeling) then great!!!

Just to give a quick background.  I was diagnosed with Acute Myeloid Leukemia (AML) in June of 2009.  I went through several months of chemotherapy treatment and went into remission, nine months later I relapsed, and the only cure for me was to have a bone marrow stem-cell transplant.  I asked my doctor what would happen if I chose not to do this and he basically said, I would "die"!!!  So I began the process of registering for a donor etc.  On November 30, 2010, at 11:55 pm, I received my stem-cell transplant.  This process is amazing in itself and I could go on about the process but basically, and more simply, out of the 4 million donors in the U.S. not one was a bone marrow match.  My doctor and his team then searched outside of the U.S. and found two 100% matches that are international donors (both of European origin which is all I know at this point, oh and that they're female).  It only took 10 or 15 minutes for the transplant to take place and its done through IV, really AMAZING!!!  I was told to consider this my new birthday, because basically, I am being reborn.  My body is the same but its a vessel holding someones else blood, DNA.  It's very weird when you think about it and I've noticed recently that I'm just trying to cope and accept all that has occurred and that some things are the same but a lot is different too.

I can only speak for myself, obviously, when I say that when I was going thru my initial treatments and then my relapse and transplant that I was just "surviving".  I was just trying to get through the day, second by second, minute by minute, hour by hour, day by day.  There is really no time to try to process everything.  It's almost like experiencing a death of a loved one.  You have the initial shock of the news, then you deal with the arrangements/services.  You really don't have time to process and mourn because your just trying to get through and then when all of that is over and the service has ended, your guests go home, your then with your thoughts and feelings and that's when the processing and healing begins.  Well, the same can be said for cancer and I'm sure the same could be said for any other life-threatening health complication anyone has experienced...but I can only speak of my experience with cancer/relapse/and transplant.

Occasionally, I have posted on Facebook (FB) an update on my health status or just to say "thank you" for everyones support.  My most recent posting led me to beginning this blog...short and sweet I posted an overall "thank you" for the support of everyone and my "gratitude" for all of that support.  I received a response from a person informing me of herbal supplements that will help with kidney/liver damage after chemo and as I was reading this I was thankful for their input.  However, her posting changed and became accusatory and almost like a lecture and making assumptions about my current life (including my beliefs about survival and my beliefs in regards to  medications, my doctors, etc).  I was very offended by her words, and she may have been just trying to help but it did not come across that way.  My first reaction was wanting to "blast" her but knew no good would come of that.  I acknowledged what she has stated and offered a simple "thank you" then she continued to post about fighting to be alive for my husband and children and that certainly $5 shouldn't be that much of a hardship to do that.  I instantly became enraged.  How dare she to assume anything about me and/or my thoughts or feelings and any decisions I make.  She knows nothing about me.  We only share a mutual friend and I made my FB post 'public' so that it could reach out to all those people who may have contributed to the fundraisers that were held for me and I may not be "friends" with them on FB.  I am not one of those people that uses FB as an outlet to battle with people.  I use it to connect to distant friends/family and to people, even though local, lost touch with over the years so because I was so worked up and angry about this woman's interpretations, I began this blog.  And one of the things that frustrated me even more was that in part of her bio she proceeds to go on about people educating themselves before offering an opinion on something and showing their ignorance.  I started laughing at that because she did exactly what she says she can't stand to see others do.  This really doesn't even anger me much, its more of a frustration.  I truly believe that people need to think before they speak or cast judgement on someone that they know nothing about!!!

So after this lengthy explanation, this is why I'm beginning this blog.  I don't want to use FB as my blog because, to me, that's not its purpose.  I want to reach out and hear other people stories who have been through cancer/transplant as I have and to know I'm not abnormal for feeling the way I feel and having others acknowledge it makes me feel more normal.  Currently, I just began therapy and my therapist states that all this is normal and some of her patients have or still are going through the same thing I am experiencing and feeling which helps me feel that I'm not so alone it this.  But it seems to help more when I can hear from someone who has done it, who has been through it, and that they understand.  Because as much as I truly do appreciate everyone's support, not everyone gets it, unless you've been through it!!!  I can't even pretend to guess or understand what my husband, children, closest family/friends have gone through emotionally, as they watched someone they love at death's door twice so I can't expect them to "get" what I am thinking and feeling.  I can try as much as I can and talk til I'm blue in the face but no one truly gets it unless you have lived it.

So, I'm beginning this blog to help me process my thoughts and feelings through out this whole experience.  I'm hoping that this blog will help enlighten and educate others on what some people that have cancer go through.  What they may think and feel, so when trying to offer advice or recommendations, it's with the intent of wanting to help and not shoving your ideas and beliefs of what you think is best.  And if anyone would like to comment, that would be "great", and if not, that's okay too.  I just want others to know what my journey has been which may be similiar to someone else's.

Image source: http://lifelikeariver.com/wp-content/uploads/2012/02/new-beginnings.jpg