Here We Go.....Again!!!

The above quote definitely represents my life right now.  Just a week or so ago, I was down with the flu and I battled through it and began to move forward with my life, again.  I have changed my diet to something that is more healthy and have increased my activity and began a a regular exercise regimen.  I began seeing results and noticed I began regaining the energy and strength I lost during my treatments and after transplant. However, here I am, yet again, down with some form of sickness, flu or whatever it may be.  I'm coughing constantly and I'm so congested that my head and sinuses ache. I understand that even though all my blood work is normal and I'm being told to continue on with life, I'm still having these setbacks.   I'm still more likely to catch the common cold, etc. because my immune system isn't as strong as someone who hasn't been through cancer and all of the after-effects it brings.

So why is it every time I want to begin moving forward, I have another setback?  It can be so frustrating.  Sometimes I just want to bang my head against the wall or scream because I'm so angry.  My doctor says I can start begin living my life normally, with only a few restrictions.  But how can I do that when something always surfaces and holds me back from moving forward?  I'm just really frustrated today.  Typically, when I get something in my head, I go full-force and this morning, one of my best friends had me look at it from a different perspective.  Instead of looking at this as my body combating me but as my body saying "we're okay, let's take this slow and we'll get there".  So, that is what I need to start doing.  I need to change my mindset from the negative and turn that anger and frustration into the positive.  This journey after transplant is not going to be smooth and easy and there will be peaks and valleys.  And even though my mind is revved and going full speed ahead, I need to wait for my body to catch up. Because if I don't, I'm actually setting myself up for more obstacles and I need to learn to balance the two so that I feel I'm moving forward than falling behind.

So I need to think of myself as that arrow, being temporarily pulled back but being launched into something great!!! ;-)

A "Mighty" Piece of String

Most of my blogs speak of the things I went through to get where I am today.  They've mostly been about embracing the changes in my life and dealing with those specific changes but, recently I've discovered I really haven't dealt with the psychological trauma.  And after processing that, I realized that this is what is holding me back from moving forward entirely.  Some people say that a person has the power to chose or control their anxiety, fear, depression, etc.  And while I may agree, there is a point where maybe one doesn't have that control or if they do, it's something that can't be changed quickly but a process that one must go through to get back that control.

I thought that when I began this blog I was fully embracing these new changes and my lifestyle.  I'm realizing I have accepted most of it but its the fear of moving forward that is greatest.  Some people may be thinking 'why, she is alive and doing well; her doctor is saying she is doing great and basically back to normal; so why is she holding back'???

I'm not sure if it's just one thing but a number of things.  For the past three years, I was basically put in a plastic bubble.  I had many restrictions and had to take many precautions because it is basically drilled into your head that these things must be done or risk infection and maybe even death.   And now, even though I have been given the 'ok,' a part of me is still holding back.

Now, I'm trying to work through why I'm holding back and every time I do this, I keep thinking of my relapse.  Thoughts of my relapse seem almost as detrimental as the cancer itself.  The thought of my relapse is what is keeping me from moving forward.  It's the last little piece of string, and even though it is small, it is mighty strong!!!

So what do I now? I want to begin moving forward but it's that anxiety and fear that is keeping me from doing so.  After my initial diagnosis and remission, I was fully embracing life.  I was so happy to just be alive.  I was so happy that I survived.  I wasn't 'sweating the small stuff'. I could definitely say I was happy with who I was and where I was in my life...and then relapse.  Why??? What in my life was not going well for me.  The only thing I can think of was my job.  I just didn't have the strive or dedication for it but that surely couldn't be the reason for relapse...could it???

I'm just trying to figure out what the exact fear is...so that I can face it and beat it.  Is it the fear of just moving forward or is it more specific (i.e. full-time job)?  With working full time it's more of a responsibility that creates less time at home which has been one of my plastic bubbles.  It means being more exposed and vulnerable to other stressors that I currently don't have which then makes me think of stress being one of those factors. It can make you unhealthy hence, then could cause another relapse.  It's becoming a domino effect. I know that these are 'what if' scenarios but, before, when you have been given that second chance and that 'what if' scenario happens, it's difficult to overcome. 

So that is where I'm at now.  I'm trying to process my anxiety and fear of totally moving forward.  I'm trying to find that sharpest knife or strongest pair of scissors to cut that 'mighty' little string and start moving forward.

Full Recovery After Cell Transplantation for Treating Leukemia or Lymphoma Can Take 3-5 Years

 

This is good to know...at least I can quit beating myself up during the times when I'm not feeling 100%...

Full Recovery After Cell Transplantation for Treating Leukemia or Lymphoma Can Take 3-5 Years

Getting Fit and Staying Heathy

This is a follow up to my last blog "Frustration and Suffering".  Last week I was hit by the flu and feeling so lousy.  I was very emotional and had a moment of weakness shedding tears and feeling sorry for myself.  I was so completely angry and frustrated that I was sick.  I think that my trip to the ER was the final straw that made me break.  I was worried that I was going to be hospitalized in Pittsburgh because of my temperature being so high.  One of the biggest concerns, even two years post-transplant, is the threat of infection which a high fever can be a symptom of.  Thankfully, my blood cultures and chest x-ray were normal.  I was given fluids and given some medication and sent on my way.

After this experience and having the worry of a hospitalization brought back my "emergency" trips to Pittsburgh while undergoing chemo treatments and transplant.  I was scared and felt that loss of control.  But after having my weak moment, my usual stubbornness kicked in.  I thought to myself that I can either sit here and wallow in my sickness or I can be more proactive and become more healthier. 

After years of chemo treatments and since my transplant, I have tried a few times to get back on track with exercise and eating healthy.  It seemed like every time I started to do this, something would flare up and would hinder my efforts.  I would give in and back off and tell myself I will try again later.  Well, this is later and this time I'm not going to back off.  I'm going to keep going.  I'm going to lose the weight that I gained when I was on steroids and I'm going to tone up and build up my muscle mass that I lost during my long hospital stays and during the times when I had no energy from the chemo.

Recently, I joined an exercise program that also includes meal planning and weekly coaching from a licensed professional trained by the Cleveland Clinic.  This isn't a New Years resolution, this is the beginning to a lifestyle change.  Eight years ago, I had joined a program and exercised three to four times a week and was the healthiest I ever had been.  It was a lifestyle change.  I continued to do this for a period of time by keeping track of what I ate but began to lessen my exercise regimen.  A few years later, I unfortunately was diagnosed with cancer and focused on surviving and stopped exercising and paying attention to what I ate completely.  Now that I'm surviving, I need to get back into remaining active and eating healthy.

I'm looking forward to getting back on track.  My goals, of eating healthier and maintaining a regular exercise regimen, are not short-term...they are a lifestyle change.  This change is better for me not only physically but mentally.  It will definitely boost my spirits and it will also be another notch on my belt for kicking cancer's ass!!!



Frustration and Suffering

The above quote couldn't be more perfect than how I am feeling right now.  I definitely have suffered over the past three years.  There is much suffering when trying to battle cancer and when trying to deal with all the ramifications that occur after transplant.  The suffering isn't just physically, but emotionally and mentally.  Don't get me wrong, I am happy to be alive and I'm trying my hardest to embrace this new journey but everyone has their "down" days.  I'm definitely having one of those "down" days today.

My emotions are out of control.  I'm sick with the flu again.  I had to go to the ER the other night because I had a temperature (100.7) and I had body aches, congestion, nausea, scratchy throat.  By the time I got to ER my temperature spiked to 102.3.  The ER took me in right away and began blood cultures, chest x-ray and put me on fluids.  After reviewing results of blood cultures and chest x-ray which were found to be normal, I was ready for discharge.  They did prescribe me a medication just in case it was the flu.  However, the medication that was prescribed caused nausea and vomiting after taking it.  I haven't taken it and now, I'm waiting to hear from my doctor on what needs to be done next.

I'm just so frustrated with not feeling well.  I can go a few weeks feeling fine but never 100%.  Will I ever feel that way again?  There are times where I think..."yes, I'm getting better" and then I begin to do more and than WHAM, I lose what I have gained.  And I have to fight again to get my body healthy and feeling better.  I'm definitely not a cancer "survivor".  I would classify myself as a cancer "warrior".  I have heard of this before but truly didn't grasp what that meant and now I think I do.  Especially right now, I'm in warrior mode.  I'm still fighting to get healthy and to feel better.  Even though the cancer is in remission doesn't mean that the fighting has stopped and all is better.  "All" is not better just some things. 

I have been reading so many posts that have been posted on FB by other transplant patients.  I'm learning that there are no two experiences that are the same after transplant.  Some people were able to return to work after 6 weeks of transplant which totally blows my mind and others still have not returned after 3+ years.  I'm hoping like hell I'm not like the latter, but right now, I very well could be.  I'm two years and one month post-transplant and I'm sick.  And when I get sick, its not just for a day or two, it lasts a week or even more.  I feel I have very little energy, my nose hurts from blowing it every few minutes, and my chest is beginning to hurt from all of the coughing.  I'm losing sleep because of these symptoms and I'm emotionally drained.  I just want to cry but haven't allowed it because I don't want to be weak.  I need to fight harder but sometimes it just becomes so exhausting.  I have to fight everyday.  There is not a second, minute, hour, day or month that goes by that I'm not fighting and it is exhausting.  Is this the way it's going to be for the rest of my life?  I'm told things get better as time goes on and yes, I can say things have improved.  But why can't I just get a break?  I just want a whole month of feeling 100%.  I want to be able to wake up each day without the sniffles, without the nausea, without the burning of my eyes.  I want to be able to take a deep inhale without having a coughing fit.  I want to be able to move around my house without feeling winded and tired after climbing a set (or two) of stairs.  I want to be able to give 100% of my time playing with my kids without becoming tired after 10 minutes of play.  Is that really too much to ask?  I think I have suffered enough and my family has suffered enough.  Not only has this worn me out but it wears on my husband, children and family. 

I know there are people out there with worse circumstances and I need to be grateful for what I have and what I am able to do.  But like I said before, I'm just having one of those weak moments that I needed to share.  So hopefully, I will hear from my doctor soon and get back on track to healing. 

Cellular Memory...Does It Exist???

What is Cellular Memory...and does it exist?

I haven't even heard of this until late this evening.  I was on FB scrolling through my news feed and found that one of the pages I'm subscribed to had an article regarding 'cellular memory'.  Cellular memory is a variation of body memory, the psuedoscientific hypothesis that memories can be stored in individual cells (Wikipedia 2012).  I began reading the article and couldn't believe what I was reading.  Finally, I felt like I wasn't losing my mind.  There have been so many changes that I have been trying to cope with since my transplant.  And for anyone who knows me, I'm a definitely a 'thinker'.  I like to think and process things until I have a full understanding of what is occurring in my life. 

Since my transplant, I have made statements to my family and friends about some of the changes I have gone through.  Many of those changes have been related to my food and seasonal allergies, which appear to be non-existent now.  Now, this could be definitely related to the chemotherapy and wiping out my immune system, but could it also be in relation to my donor???  Another change which really perplexes me is my craving for seafood.  My whole life I have hated seafood.  I have disliked it so much that I have even ordered a peanut butter and jelly sandwich from a restaurant because I didn't want to eat seafood.  Now, I crave it.  Could this also be in relation to my donor???  I also enjoyed eating sweets and now I can hardly enjoy even a bite of cakes, cookies, pies etc.  I'm really not complaining much about that due to their unhealthy nature but I can't help but wonder, could this be related to my donor???

As I stated before in one of my previous blogs, I was battling the feeling as though my body was just a vessel that doesn't entirely feel as though it belongs to me anymore.  It's having the knowledge of knowing that the blood that flows through my body is no longer my own.  It's someone else's (with their cells and genetic make-up).  So, is it really that hard to believe that some of the changes I have gone through both physically and mentally could be related to this 'cellular memory' theory.

Even my taste in music has changed.  As weird as this may be, I have a very broad spectrum of music that I listen too.  I grew up listening to 50's music and have always enjoyed but now I'm finding it very hard to tolerate, along with country.  I still have a broad spectrum but if I'm somewhere and that music begins to play, I become very annoyed and just want to change the station.  I have been wondering why this sudden change in my taste of music.  Could this be related to my donor as well???

I know I really won't have the answers as to why these things are occurring.  Could it be donor related? Could it just be related to the whole experience with the possibility of death and changing my thoughts, views and perspectives on life?  Who really knows, but it does give you something to think about.

I found it very interesting in one of the articles below, that gave a statistic of the top three countries that import and export donations.  Those three countries consisted of the United States 45%; Germany 29% and France 25%.  I had stated in a previous blog about my donor being a 100% match and being of European descent.  I am half French and half Slovak.  How interesting and how likely it maybe that my donor may just be a French woman and may very well share a genetic history.  I can't wait to explore this further and hope that she will communicate with me.  Ironically,one of the many countries that has read my blogs has been France.  Could this mean something???

Could I be reading too much into this?  Maybe.  But I truly believe there has too be some correlation with all of it.  As I mentioned, I have been thinking about this for the past two years and have never heard of 'cellular memory' until just this evening.  I really don't believe in coincidences.  I believe there is a correlation and I'm definitely going to explore this. 

If you have undergone a transplant or know of anyone who has, have you or they experienced any of these symptoms.  If so, please comment.  I'm really curious and I want to learn more.



Organ Transplants and Cellular Memory (http://www.paulpearsall.com/info/press/3.html)

Cellular Memory - Myth or Reality??? (http://suite101.com/article/cellular-memory---myth-or-reality-a303357)

Can You Promise It Will Be Okay???

I've been debating on whether I should post anything regarding the recent tragedy that took place in Newtown, Connecticut.  I even have reduced my time on FB because of all the news feeds and reminders of the tragedy and you can't turn on the TV without a reminder of what has happened. But after this morning, I decided I needed to write about it and how it has affected my family.  And I believe, that my fight with cancer and transplant has opened my eyes to the negative things in life that occur and this is one of those lessons.



As I was taking the kids to school this morning, my son looks over at me and he looks into my eyes and says "Mom, I'm scared" and my heart felt like it was falling apart.  As parents, we try our best to make our children feel protected and safe and this morning I was reminded (and I'm sure many other parents were reminded) that when they leave our side that is not guaranteed.  The only thing I could do was reassure him and my daughter that every school in the US is hyper alert and will take every action and use every resource possible to make sure all the kids are safe while in their care.  As we were pulling up to the school there were several men outside and a policeman at the door escorting children in.  I explained to them that they're there for their protection and if at anytime they get scared or worried, they need to let their teachers know and their teachers will make sure they can speak to someone about their fears.  As they were getting out of the car, my son looks over his shoulder and pauses and I could tell by the look on his face and the emotion in his eyes that  he was looking for reassurance.  All I could do was smile and a nod letting him know that it was okay.

But really is it "okay"???  One thing I have learned these past few years, is that there is no guarantee.  While fighting and struggling with cancer and my transplant, I learned that there are no promises.  One thing we learned as a family is that there is no promise of a tomorrow, and can only promise a "right now".  And that that "right now" is constantly changing.  My husband and I believed that our children needed to be aware of what was going on regarding my health.  We communicated with them the reality of the situation on a level that they could understand.  And so, this is what we have done with this tragedy as well.  Some may agree and some may not, but for us, we need to educate our children on this tragedy and allow them to process this reality.  By doing this, it provides them with the tools on how to cope and process when faced with circumstances that will be challenging, tragic, etc.

One of life's lessons we as a family learned, is that you can not promise everything will be okay.  I couldn't promise to my children that my cancer would go away, and I can't promise that it won't return.  Also, I can't promise they will be 100% safe here at home or even at school, but I can promise that my husband and I, and even the school, will do everything we can to try our best to keep them safe and explain to them how we will do that.

One thing I have learned through out my battle to remain alive, is that bad things happen and there is no stopping them.  We can do more research, create more laws, and provide more restrictions but it will not stop things like this from happening.  Whatever challenges or tragedies we are faced with, we will cope, process and heal. This is life...this is reality.

This is DEDICATED to the victim's and victim's families of Newtown, Connecticut.  My thoughts and prayers are with all of you.  God bless!!!