Monday, January 28, 2013

A Bad Case of "Deja Vu"

I know I keep on blogging about being sick, but this is part of my reality.  After about three days, I was finally able to get up and moving about.  Whatever kind of flu bug I have, it really has wiped me out.  I'm still congested and continually coughing.  These things are not fun but I'm dealing with it.  What I didn't expect, especially a few days ago, was to feel the same way I did when I was undergoing chemotherapy treatments.  I was so tired and weak.  All I wanted to do was lay around.  I didn't even want to eat because anything that I did eat had no taste and was not satisfying.  Furthermore, I would become nauseous after taking my flu medicine upon my other medications.  Due to my husband and son being out of town, I had to call my mom and ask her stay with me and my daughter because I felt so lousy.   Most of all, these factors made me feel as though I was experiencing "deja vu" of my days receiving my chemotherapy treatments.

I didn't think that I would ever have to experience feeling that lousy again without actually going through it, but I was definitely proven wrong these past few days.  I was able to cope a little better, emotionally and mentally, because I knew I wasn't actually going through the treatments.  But, it didn't make me feel a whole lot better because here, yet again, was another reminder of my weakened state.

I know that whatever illness or illnesses that are going around, many are feeling the same way, but of those who are just sick and not trying to recover from fighting cancer and trying to rebuild their body after a stem-cell transplant, mentally it can just be as damaging.

It's just another setback.  There are many transplant recipients that have very little difficulty and then there are some like me, that every time they try moving forward, another setback occurs.  It can be so frustrating.  I'm not even sure if I can remember what it is like to actually feel good.  It always seems like there is something that isn't right.  When will this get better? I try very hard to look on the positive side and move forward.  I psych myself up by saying "this isn't going to beat me".  But then it does with me getting the flu, or experiencing a minor GVHD issue.  How much can a person take with repeated setbacks after setbacks? 

I am slightly improving and that does make me happy, but the interval from the time I was sick prior to now was only two weeks.  So am I going to be experiencing a new illness in a couple of weeks?  Or will I be blessed with a few weeks or more?

As hard as it has been, I'm really trying to focus on the positives and take one day at a time.  But its so draining to have to continue fighting each and every day.  It's a constant, daily battle.  Imagine a time that you were not feeling well and take that time and think about feeling like that almost every day.  Would you say that you would just be a little bit frustrated?  Well, that is what it has been like for me. 

I don't want to give false ideas that I haven't improved since transplant. I definitely have, but each day continues to be a constant battle.  And each of those days can be the same battle or a different one.

I'm ready to get out of this whirlpool of deju va and start moving forward without moving in continuous circles.

Wednesday, January 23, 2013

Thankful for my Besties!!!

I know I have said it before...and I will keep saying it again.  Thanks to everyone for your support.  Even now, two years post-transplant, I still have so much support and words of encouragement from people when our paths cross.  It really means so much and is so uplifting.

So I give a great big THANKS!!! 

I want to also thank my best girlfriends who still stick by my side.  They never show an ounce of frustration with yet another setback in my life and, at times, my negative frame of mind.  They are always so optimistic and are my biggest cheerleaders.  I am so grateful to have them in my life and I want the world to know how lucky I am to have them in my life!!!

Chris, Erin and Lisa, you are the best and thanks for being a part of my life and not holding back from giving me a kick in the behind when my mind is on the negative side of things!!!  Love You Girls!!!

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!!! ;-)

Saturday, January 19, 2013

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 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.

Thursday, January 10, 2013

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!!!

Wednesday, January 2, 2013

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.