+30 days Post Transplant Check - My Week in Review

Up and Down Energy - For the most part my energy levels are pretty good.  I haven't had to have a nap during the day in the past week but it is hard to know whether that is the steroids or me getting stronger (I will go with the getting stronger).  I still have my weak days though.  Sunday I was feeling strong, Amy and I did a bunch of work in the apartment.  I really wanted to finish what I started so I might have pushed myself a little bit (much to the dismay of Amy :) ) but by the time I was done I was pretty much wiped.  The nice thing though is as I talked about my much slower lifestyle in yesterday's post when I am tired I can just take the day to rest.  My brother actually called me a retired 30 year old! Although who can't say they wouldn't want to retire at 30, screw freedom 55 ;)  Wednesday I was really tired as well but I know that that is just part of the recovery process.  My body is still rebuilding itself from getting destroyed so I am sure that has a lot to do with lower energy, your body is working super hard to rebuild. 

Tuesday Appt - Tuesday's appointment went pretty well.  They tapered my steroid dose down a little bit which is good news.  It was also the fastest appointment day I have had in the past year.  My platelets had fallen below 100 to 75 which alarmed Amy and I at first.  After talking to the oncologist though he assured us not to worry and that it was completely normal for them to drop this early in the recovery.  For some reason when the body is fighting GVHD the bone marrow can become suppressed.  The doctor told us he would let us know when it was time to be worried but now wasn't that time.  So much is happening inside my body that the counts are destined to move around.  We were really excited (well I am sure Amy was more anxious) to see Friday's blood results. 

Friday Check up - Friday's appointment was officially Day +30 so I have hit a pretty big milestone that I was pretty excited to hit.  What is crazy is some people can still be in the hospital at day 30 and I was released two weeks ago.  I count my blessed stars for that each day.  For the most part my check up today went pretty good.  Most of my blood counts were good.  Unfortunately my platelets didn't come up any, they went down a bit. The doctors said not to worry because some of the drugs I am on suppress my platelets so they have stopped me taking those to see if that is in fact the case.  On tuesday we shall find out if it is the antibiotic and antiviral keeping them down or if they need to start looking for other reasons.  They said nothing to worry about right now.  On tuesday they reduced my steroid levels but this week my GVHD flared up a fair bit (especially on my face) so they have raised the steroid levels again to last weeks levels.  I am happy that this will get rid of my ichy forhead hopefully.  Plus I will take skin over organ gvhd anyday.  We asked what level my gvhd is and the doctor told us I have level 2 skin gvhd but only mild overall gvhd. That was a little bit of a relief to hear that.  The next big milestone is day 60 when they stick the needle back into the bone marrow to find out if I am still in remission and what percentage of my bone marrow is the donors.  Until then I just keep healing and getting better :)

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Inspiration for my posts - Everyone seems to be really liking my posts these days.  Keep the comments coming because I love hearing them.  Feel free to pass any post that you like along to anyone you like.  I wanted to take a minute to reach out to everyone though for help.  A lot of the inspiration and ideas I get from posting actually comes from you.  When you ask questions it usually sparks an idea that snowballs.  This past week I was asked two questions that have snowballed into 8 different post ideas.  So please feel free to ask any questions that you are curious about (I am an open book) through commenting, emailing me, or facebooking me.  I will answer you directly but don't be surprised if you see a post that delves into the topic soon after ;)

A Idea for Sunday - I have always taken Sunday's off of posting for two reasons.  First, I wasn't sure how much everyone would read them and second I just didn't want to get overwhelmed and be writing every day of the week.  I have actually come up with an idea for Sunday posting that I wanted to gauge what everyone thought.  I would post a quote or story that we could all have a discussion about.  This will only work if everyone comments and we hold a blog dialogue.  I would check throughout the day and comment and be part of the discussion but it would need all of you to join in as well.  So I would love to hear what you think, would you be interested in a weekly Sunday discussion??  Please comment and let me know.  I think it could be a lot of fun! :)



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My Leukemia's Poetic Justice

When I think back over the past year, the hardest thing for me to learn to accept and embrace was that my life was now supposed to move at a much slower pace than before.  Before I got sick I was the type of person who, when I put my mind to something I wanted to excel at it, and I wanted it to be fast. 

When I taught myself to snowboard I was at Chicopee or Glen Eden everyday of the week either before work or after getting some time on the hill (my car always had all my snowboarding gear in it just in case).  When I took up learning golf I went to the driving range every day after work and played a minimum of two rounds a week.  In addition to learning some hobbies over the past three years, I had also thrown myself into my career.  I wanted to move quickly up the company, and I knew that I had to work hard to do so.  You can see in all these examples, I have this obsession with getting good at things I try very quickly.  Quickly being the key.  When I got sick this was all about to change.

Call it poetic justice but of course the form of cancer I was diagnosed with requires one of the longest treatment programs there is.  I couldn't help but be jealous when reading stories of Lance Armstrong, his three month of treatment program, and being cured within a year.  I still to this day would not trade my disease for any other as I believe there is a purpose for me getting leukemia, but my desire to do things quickly brought out a little green envy ;)  I of course wanted to beat my leukemia, and be damn good at it but this was the one time where no matter what, I couldn't finish any faster.

When I got out of the hospital after my induction I faced a new world.  Many of things I had focused on in the past three years were not available to me any longer.  And on top of that the one thing (my treatment and recovery) that I could focus on, I couldn't make any faster.  I knew I was going to have to make some major adjustments over the next two years :) 

The first month wasn't too hard of an adjustment to a slower life because you are so weak from the intense treatments that you don’t have much energy to do too much anyway.  After the first month and when Amy was back at work, I found myself getting really bored and frustrated.  To honest, it was more a feeling of being trapped.  My life was on hold, I couldn't speed up the process, and my options of what I could do were very limited.  Let’s face it, you can only watch so much daytime television or read so many books :).  There were a couple of days that I feel bad for Amy because she came home from work to what I am sure was one grumpy bear.

It took a bit, but one day I realized I had a gift that I wasn't truly appreciating.  I am a firm believer that everything happens for a reason and so my leukemia was no accident.  It was something that forced me to slow down in my life. 

Once I realized this, I decided I could make little changes for the better.  Each day I would go for a walk, if only for 10 minutes.  I used to go for walks with the focus of getting from point A to B as quickly as possible.  I don't think I ever took the time to look around and appreciate what I was seeing.  So when I made the decision that I would start walking each day it was to help me get stronger, but I wasn't going out to work out, I was going out to appreciate nature and the beautiful village I lived in.  

These walks made an instant difference in my life.  On my first "stroll" (I moved pretty slowly and you can say I fit right in with all the senior citizens of Port Credit :)) I found I saw more beauty than I could have ever imagined.  Today I have learnt to embrace my more laid back lifestyle.  I still find myself slipping back into my old ways of wanting to do things quickly but at least now I am conscious of it, make sure I appreciate the journey, and try to slow down. 

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Cancer's Positive Side Effect

Why on earth would someone say getting cancer is the best thing that ever happened to them.  You all have heard it said before, heck I have even said it.  But from your vantage point I could imagine what you are thinking, "Are they f'ing crazy?? :S "  You see what we have to go through while to fight for our lives, how could it ever be referred to in a positive light.  One of the major positive side effects of a cancer diagnosis is it provides you with amazing perspective and opportunities for reflection.  I spoke yesterday about how others can put your own situation perspective showing you that there far worse realities.  The perspective I speak about today is a change in what is important to you and the growth you experience as you realize it.  When you are forced to face a reality that you may no longer live you really examine your life to that point and decide whether you would be happy with your life so far, as I discussed in my post If you were to die today, would you be happy with your life? . 

For me in the beginning I had no idea how my battle with cancer was going to change my personal perspectives on different aspects of my life but I was confident many things would change.  This possibility excited more than you could imagine.  I knew that the next two years fighting this disease were going to change me to my core and it was exhilarating to ponder who I would become.  I have spent lots of time battling the disease, but also used the time for reflection and self growth.  I still don't know who will emerge but I can tell you I already have different perspectives than 1 year ago. 

So I hope this helps you all understand why cancer is seen in such a positive light to so many survivors.  It is not often that we are given the chance for a do over in our lives.  And when you have to fight like hell to achieve that do over, how can you not make the most of it and be positive about your disease.  It was the catalyst that woke you up and enabled you to change the things you didn't like in your life.

The saddest part is so many of us (me included :) ) need this catalyst to re-examine our lives and perspectives when we don't need it.  We just need to take some time to ourselves and honestly take a look at our lives and change what we don't like.  Remember life goes by fast and not everyone gets do-overs so lets all do it right the first time.  Don't wait for your scary wake-up call to come make changes today.  They don't have to be massive changes either, it can be as simple as trying something you always wanted to try or taking back up an old hobby that you used to love. 

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Everyone Needs Inspiration in their Darkest Hours

Yesterday I wrote about the importance of embracing your fear when you are diagnosed with cancer so that you can move past the fear and bring out your inner fighting spirit.  While this is an important first step that can’t be missed, what really activates our fighting spirit is being inspired by others to fight. 

Most would think Lance Armstrong or another cancer survivor provided me with my inspiration to build up my fighting spirit, but it wasn't anyone suffering from cancer at all.  My inspiration came from a childhood friend and the battle they were fighting.  While I was in Trillium waiting to get transferred to Princess Margaret to begin my treatment, I heard a heart wrenching story of a childhood friend that provided overwhelmed me with strength. 

It is the story of my childhood friend, Kevin Mills.  For those that don't know, I have known Kevin since I was in grade 7 and made the transition to the Guelph Track Club.  He was older than I was, very successful, trained in the top group of the track club.  I looked up to him and aspired to one day train with him in his top group. 

As the years went by I moved up the ranks of the team and we finally became training partners.  He then transitioned from someone I looked up and aspired to train with, to a friend, training partner and big brother.  He still left me in awe with his ability to do 100 push-ups a day when I struggled with 20 :)  But when we trained we were relentless with each other.  We would beat the crap out of each other on the track. 

It was this training that fuelled my competitive spirit, our last set was always a full out race regardless of what the coaches said.  I would always piss him off because I could out kick him so I would sit on his shoulder and wait.  He always knew it was coming and he was much stronger, so he would try to punish me early on before the final 150m so I had no kick left.  Like I said we were relentless with each other.  I bring this up because when I got my leukemia society red bracelet (their version of the live strong bracelet) their word is Relentless.  I couldn't think of a more perfect word for me :) 

I tell you this story because the same time my life was changing, so was Kevin's.  There was one day when I was working through accepting the fears of my journey to come and trying to find my inner fighting spirit, when I heard Kevin's story. He was at his sister's wedding in Cuba playing in the waves when a wave hit him wrong and broke his neck and he suffered paralysis.  It made me so sad for him and his family and completely put into perspective my situation.  I found videos of him doing physiotherapy which are still the most inspiring thing I have ever seen. 

Seeing his strength and determination not only reminded me of why I was always in awe of him during our training days but it awoke all the strength and competitive willpower I had in my running days.  Suddenly my cancer was something I would compete with and win against. To learn more about Kevin's story check out this page; Kevin Mills.

I hear from many people that my journey has inspired them and provided perspective to their lives.  Kevin is who inspired me and provided me with the perspective I needed.  Please keep Kevin in all your prayers, they have been so helpful for me and he has been so important to providing me with the strength I needed during my darkest hours.

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Don't Worry it is Okay to be Petrified

You just found out you have cancer, don't worry you are allowed to be petrified.  It is not often you hear the news that you have an illness you may not survive.  Although this is a frightening time, you have to spend the time accepting and embracing your fears.  Remember you are allowed to be petrified, this is a scary time.  I write this because I don't think someone going through a challenged of this magnitude can actually move forward, grow, and learn from this experience if they don't take the time to deal with these initial feelings. 

Unfortunately you will have to do a lot of this on your own (don't worry I have some tips :)).  Your new reality is a very hard time for your support network too and they will have a hard time truly understanding your feelings.  In addition, they will work extremely hard to keep your spirits up and keep positive.  Now don't get me wrong, being positive and upbeat is crucial, but you also need time to be petrified.

You need to go into this journey with a strong fighting spirit, and the strength your support network provides is invaluable.  Many people always say how positive and strong I am but this is because I took the time to work through my initial feelings and I have such an amazing support network that props me up anytime I get beaten down or need to draw on their strength. 

In taking the time to deal with your feelings, I can't say how long it will take because everyone is different, I can only speak from personal experience.  In my moments of solitude and quiet in the first few days (which wasn't many ;)) I took the time to have some good cries and just allow myself to be petrified and scared. This releasing of pent-up emotion was like re-charging the batteries and I always came out of it with readiness to continue my fight. 

The other amazing technique is journaling.  It is an excellent way to have a one way conversation and just become immersed in your own thoughts and emotions.  You can say whatever you want to yourself, and it is amazingly therapeutic.  This is actually the origins of this blog.  I decided these written thoughts may add some insight or help others so I decided to share them in the form of a blog.  

The final technique I used was to read about others who went through similar circumstances.   When I was first diagnosed my godsend was Lance Armstrong's book, it’s not about the Bike.  It made me realise all the emotions I was going through, he also went through, as well as thousands of other cancer patients as well. This really helped me understand it was normal to have these fears and allowed me to accept the fear and ultimately embrace it.  Without embracing your fear, you can’t embrace your inner fighter to battle the cancer.

Remember this is a scary, you are allowed to be petrified.  Don’t your fear to completely take over at any one time, instead give it different forms of release.  This is will allow you to accept it and embrace your new reality so that your inner fighting spirit can begin to build and ready itself to defeat your new foe.

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Day +26 - Update Time

Good Morning,

I didn't give an a final update at the end of last week so I thought I would use this time to do so.  Everything went well at my Doctor's appointment on Friday.  All my blood counts were good and my body seems to absorbing the cyclosporine really well so each appointment the dose seems to be getting reduced.  Last week I only had one problem and it was that my toes were freezing cold.  I ended up going out and buying slippers and a bunch of super warm winter socks.  That helped quite a bit and this past weekend it seemed to break a bit and they weren't as cold.  They still get cold but nothing compared to last week :)

I am really excited about his week because I will be finishing off one of my immunosuppressants.  That means that I will only be on the cyclosporine and steroids to combat th GVHD.  It is extremely exciting to be finishing this drug because it requires so much structure.  It has to be had on an empty stomach three times a day so afternoon and night time snacking are not allowed.  The worst of it is I also have to get up at 6am every morning to take it. It will be very nice to notbe woken up at 6am for the first time since December 18th. :)  I was joking with Amy though that now I will actually have to use self control to manage my eating because I am losing a very good crutch.  For those that don't know the prednisone can make you pretty hungry.  Other than that things are going pretty good.  I have to work pretty hard to keep my mood level.  The steroid can also really affect your mood.  I think I do a pretty good job at maintaining it but Amy or some poor unsuspecting customer service rep of poorly run companies can sometimes get in a flare up cross fire.  :) 

This past weekend I wrote two posts which I know is not normal for me so I am sure a bunch of people missed them.  Here are the links:
Don't Forget to Update Your Blood Donations
Cancer Reflections - A Year with Leukemia

I am about to embark on a writing journey that I hope you will all enjoy.  I am going to reflect on the past year and share all the lessons that I learnt from my past year.  Although they will be based on my cancer experiences the lessons would able to be applied to any situation where someone is undergoing a personal disaster I hope.  Remember if you like a post, click on an ad when you are done reading.  It will give me a good way to determine which posts you guys like the most ;) Hope you enjoy them :)


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