Week In Review - Day +38

Site Changes - I have been working on the design of my blog the past few days.  You will notice that I have changed the design of it slightly.  In addition, I have added two pages to my blog in the past few days.  First I have added a page called Educating the Masses.  This will be a central location for any disease specific posts where I try to explain specific issues in layman's terms.  The second page I created was Most Popular Posts.  This is based on some feedback I have received.  But I would love to hear from all of you.  Please email me or comment and let me know what your favorite posts have been.  It can be the ones that inspired you the most or made you laugh.  I want this page to be based on you the reader's views so please let me know :)

Tuesday Check Up - My gvhd really flared up on the weekend.  So they increased my dose of steroid.  Part of the reason why is I was on a really large dose of immunosuppressant that ended on friday so that probably helped with the flare up.  They put me on a smaller dose of that and are going to slowly ween me off it.  It has gone down a bit now so it is nice to see it working finally. :)  When it flares up it feels like I have a bad sunburn.   THe platelets didn't go up but they explained it to us really well so we aren't worried.  First the drug that suppresses them that they took me off can take up to 3 weeks to get out of the system.  Also it is really normal for transplant patients to come out of the hospital with normal counts and then as gvhd sets in the platelet count drops.  It plateaus for a bit which it looks like it is now and then they eventually come back up.  In normal people platelets stay alive for 8-10 days.  For transplant patients as early in the process as me they only survive for 1-2 days.  So they are super tempermental.  Nothing to worry about though.
FRIDAY CHECK UP - Needless to say we were quite anxious to get to the Friday appointment to see if the increase in immunosuppressants would reduce my GVHD.  Thankfully it seems to be working.  All my liver enzymes have lowered back down.  My skin GVHD has slowly started to subside and I am not as red or sore as I used to be.  It looks like it could be developing a little in my mouth so I will start up so biocarb mouthwashes to keep it clean and the immunosuppressants should take care of the rest.  Finally some other great news, my platelets made a climb upwards today :)  So all in all it was a great appointment.

BLOOD DONATIONS - The contest for the blood donation is wrapping up, Monday Jan 31st is the last day of the contest so please if you haven't either update the facebook group, the blood donation page, comment on this post or just send me an email with your donation dates and donation dates of friends and family you have influenced to give.  We have had an amazing year of donations and I just want to relay the accurate number to everyone.  The race for the winner is really tight but I want to make sure I have all the information before I release the results.  Look for the results in a post next Tuesday Feb 1.

Ads on my Site - I just wanted to do a quick disclaimer that the ads that show up on my site are chosen by a third party.  Lately i have noticed ads that I find offensive and don't belong on my site.  As soon as I see them or know about them I take action and reject and remove them being able to advertise on the site.  So if you see an ad that is offensive please don't be offended, just send me a quick message about it and I will take care of it :)

New Contest Coming - The past two weeks I have been planning a fun new contest for the website.  This one should be fun because everyone can participate (no restrictions like the blood donations had).  The contest will have 2 prizes, one for first place and one for second.  Just so you know all those ads I have been asking you to click is actually paying for one of these prizes, so if you want bigger prizes in the future click more ads :)  I will continue to use the ad revenue to invest back into this blog for fun contests.  I will make the official contest announcement on FEB 2 so make sure you read the blog that day for full details.  It will go until April 1 (my official day =100 post transplant).

Sunday Dialogue -  We had our first sunday dialogue this past sunday and was a success for the first time out.  I would love to see more of you participating though so if you read the topic take a second to leave a comment.  Also if you like check back throughout the day and you may find that someone else has responded to your comment and you can comment back.  It is a fun way to have a dialogue.  This past sunday we started discussing about optimism versus pessimism and it morphed into a dialogue about whether people who are constantly worried about negative things happening are capable of being optimistic.  Hope to see more of you on sunday in our discussion :)

Camera - Well by now you all know that I one of my major passions is photography and I have finally gotten my camera gear  I am back using my old trusty Nikon d90.  I decided this offered me everything I needed in a body for now and I could invest better in lens.  I am carrying two lens a 70-300mm telephoto.  This is a super fast lens that is longer than anything I had before so I can't wait for the spring to get out there and shoot some ducks, geese and other port credit wild life.   They won't know what hit em :)  ALso got this amazing 35mm super fast prime lens for my everyday shooting and walking around.  It makes my camera super light and will be a lot of fun because I can do a lot of things like completely blur the background with it.  It should render some really artistic shots.  Plus it can take in a ridiculous amount of light so my sunrise photos should be something else.  I can also use it for night photography so as I get stronger and the weather warmer I intend to do some night walks with the camera.  As you can tell I am very excited, just waiting for the time when I have the strength to get back into full fledged.  Only one lens left to complete the setup but that is for later this summer :)  As I get back into photography I will go back to doing Friday Foto posts where I post my favorite photos for you all to see. :)  Until then you will have to put up with my rambling  :)

HOpe you have a good weekend and looking forward to seeing you all in our Sunday discussion ;)

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The Truth and Facts about GVHD

Today we will cover something that is coming up quite a bit in my posting these days, especially my weekly updates, GVHD.  Doesn't it sound like a such a scary acronym?  The definition for this acronym is actually Graft Versus Host Disease.  Which probably sounds even scarier to you now. If you were to do just a quick search on the internet about this, you would probably come away whiter than a ghost ;)  Unfortunately it is one of those topics that can't be skimmed over, because it really does have a lot of scary pieces of information related to it. 

The scariest being that it can actually kill me.  What's that you say, I underwent a procedure to get rid of a disease that could kill me, only to have the thing that saved me give me another disease that can kill me?  Confused yet?  Well read on and I will dispel all your confusion regarding this disease.  Hopefully I will also alleviate some of the angst and worrying you get everytime I talk about how my GVHD has gotten worse.

INTRO - Let me start by saying that GVHD is a frequent complication when undergoing an Allogenic Stem Cell Transplant (means my stem cells came from someone else) .  You see when I receive the bag of stem cells, it is also filled with millions of the donor's T Cells as well.  What are T Cells you ask, we will get to that.

The quick intto/coles notes version on GVHD is that the donor's immune cells see my body as being  foreign and are attacking me.  So you are probably asking what are the doctors not trying to stop it?  Well the funny thing is the doctors actually want GVHD to occur inside their patients, because it brings about a positive side effect called GVME (Graft versus Malignancy Effect).  Basically what this means is the donors cells also see any remaining cancer cells that the chemotherapy and radiation may have missed, and attack those as well.  This is something that we really want to happen, and is why the doctors allow the GVHD to be present. 

The trick for them is they have to control it so it doesn't get out of hand and do a bunch of damage to my body.  Additionally, the presence of GVHD gives the doctors a good measure of how strong the donor's immune system is inside you, before the aspiration at day 60 is done to determine the actual results.

TWO TYPES -  It is often discussed as one disease but GVHD is actually two different types, Acute and Chronic.  Acute usually occurs and flares up in the first 100 days post transplant and Chronic can flare up at any point for the remainder of my life.  Because we are so early in the process I am just going to focus on Acute GVHD for today.

T-Cells - I told you I would come back to these ;)  T-Cells are special white blood cells that recognize foreign cells in the body and orchestrate attacks on them.  These foreign cells could be bacteria, viruses or  other foreign substances.  T-Cells are so impressive that they can distinguish between body cells that are "self" (part of their body) and "non-self" (body cells from another body).  How can they do this do you ask? Well they have a little help from a thing called HLA markers.

HLA Markers - HLA Markers is shortform for Human Leukocyte Antigens.  Don't focus on the name, just know that they exist on every cell in our body and are like a fingerprint, no two people have the same set of HLA markers (except identical twins of course). 

So How on Earth can they do a Transplant? - So if all my cells have a different fingerprint than the donor cells, and I don't have an identical twin, how on earth did they do a transplant?  And how are the T-Cells not operating a full fledged war against me?  o prevent this war from taking place inside my body the doctor's have a couple prepatory steps they do:

First, they kick the crap out of me with chemotherapy and full body radiation.  This is intended to suppress and kill my own bone marrow. 

Second, they find the best genetic match possible for me in a donor.  You see in the HLA antigens there are 10 major or dominant markers that they look at.  In my case I had a 10/10 match.  So although I had a great match there are many another antigens that don't match, and thus the GVHD. 

Finally, post transplant they put me on a lot immunosuppressants to keep the T-Cells in check while they get used to their new home.  Eventually the donor's T-Cells will die off and my body will make its own T-Cells using the donor's stem cells.  These will still be a HLA than my body but the theory is they should be more comfortable in my body because they were made there. 

With all those steps why are there flare ups -  Administering the immunosuppressants is the least scientific part of the whole process.  One of the drugs, cyclosporine, requires very specific theurapeutic dose ranges based on body mass.  That is where the science ends and the guessing game begins.

There additional immunosuppressants that are used in conjuction with the cyclosporine to control the GVHD and keep T-Cells attacks on my body getting too serious.  The doses of these drugs are continually being changed based on how whether the GVHD is flaring up or subsiding in your body.

The fine balance is that they want the T-Cells attacking in my body to remove any remaining cancer cells but don't want the T-Cclls attacking my good cells. So if they suppress the T-Cells too much,  I can become very susceptible to all illnesses from bacteria, viruses and fungii. 

This is why the doctors are continually adjusting the levels.  They want me on the least amount of immunosuppressant as possible to keep the GVHD mild.  As it flares up they adjust my doses to get it quickly back in control and then slowly taper them back off.  It is just a game of waiting for the T-Cells to get comfy :)

Stages of Acute GVHD - So I have talked about a lot of the background stuff but not really gotten to the meat of GVHD. Physicians grade the severity of th GVHD based on the number of organs being affected and their severity.  The main organs affected with Acute GVHD are the skin, GI tract and Stomach, and Liver. It can be broken down into 4 different stages:

• Mild (Stage 1)  -a skin rash over less than 25% of the body
• Moderate (Stage 2) -and intestinal disorders.a skin rash over a more than 25% of the body accompanied by mild liver or stomach problems
• Severe (Stage 3) - redness of the skin, similar to a severe sunburn, and moderate liver, stomach and intestinal problems.
• Life Threatening (Stage 4) -blistering, peeling skin, and severe liver, stomach, and intestinal problems

 Each organ can individually range in severity as well.  Confused? I will go over each organ to clear it up a bit

GI Tract - this can range from mild cramping (mild), nausea (moderate), watery or bloody diarrhea (severe and/or life threatening).

Liver -  this they monitor through biweekly blood results checking all my liver enzymes to ensure they do not get to elevated.  If the liver is affected by GVHD too much I could develop yellow eyes or full on jaundice.

Skin - this is monitored visually. It usually starts as a small rash less than 25% of the body (mild), over 25% of the body (moderate).  The rash can become like a sunburn (severe) and finally blister and peel the skin which is life threatening

It can affect other area of the body as well but these are the ones the doctors are most concerned about. 

So What type of GVHD do I have - up until this point my gvhd has been classified as mild because only my skin has been affected.  Thankfully it has not really spread to my other organs yet. 

Unfortunately my skin hasn't been mild though. It has been moving back and forth between moderate and mild.  For the most part I just have a rash on my face, back, and shoulders, but recently my face flared up into being the sunburned level.  This is mainly just really uncomfortable as it feels like a bad sunburn. 

The doctors sprung into action with this flare up, by upping the doses of immunosuppresants.  When it comes to the skin they don't want it to blister and break. because this provides access points for infection. 

Well I hope this post has dispelled some of the mystery and fear surrounding GVHD. I really think that unless you are fully educated on a topic it is impossible to stay positive when symptoms are changing and you will worry more than you should. Now you have a reference guide for my weekly updates, so you can decide for yourself whether what I tell really is that scary and worth worrying about ;)

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You Are Never Given More Than You Can Handle

Many people when given the horrible news they have Cancer are obviously devastated (I was no different :) ) After the initial shock, some people are left with self pity and constantly asking the question why me.  Thankfully I did not go through this stage but I attribute this to my successful use of the 4 P's of Positivity.

I am believer in a higher power, that many people refer to as God.  Whatever higher power you may believe in, there is one central idea that I believe transcends all religions, You Aren't Given In Life What You Can't Handle.  This belief gave me strength, peace, and purpose.  I firmly believed that I was chosen to fight this disease, because I had the ability to not only defeat it, but learn from it.

I came across a wonderful quote by Lisa Wroble that sums up this belief perfectly

You are stronger than you think,
remember to stand tall.
Every challenge in your life
helps you to grow.
Every problem you encounter
strengthens your mind and your soul.
Every trouble you overcome
increases your understanding of life.
When all your troubles weigh
heavily on your shoulders,
remember that beneath the burden
you can stand tall,
because you are never given
more than you can handle...
and you are stronger than you think.
~ Lisa Wroble ~

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Positivity is Spelt with 4 P's

Today marks a very special occasion.  It marks my 100th post! When I started this blog I never imagined I would make it to the century mark.  I thought today I would write about something that I have been asked a number of times over the past year, but have yet to address.  I am often asked how I capable of remaining positive, despite going through such a difficult time.  Additionally, people are often curious if once your mind is trained to stay positive, is it easier to stay positive in difficult times.

I think my past experiences in running help a lot with my positive outlook.  While at a competition I always had to remain positive before a race.  If you didn't enter the race with a positive frame of mind, you had no chance of winning.  Even in the races that I was greatly out matched, I knew my higher pain threshold would give me a chance to win if I could just be in contention near the end of the race. 

This mentality has stuck with me for my life.  No matter what the odds I always remain positive.  When we are faced with a personal disaster, regardless of what it may be, I don't see the point of thinking negatively.  In no circumstances can I see how negative thinking will help you get through your most difficult hours (feel free to challenge me if you think I am wrong :)).

So what if we don't all have past experiences that have helped us train our mind to think positively?  How can we sustain positive thinking when faced with our biggest challenges?  I believe that it takes 4 different P's in order achieve a Positive Mindset, regardless of the challenge.

Peace - When we are first faced with a life changing challenge, the first thing we need to do is actually taking a step back and make peace with it.  For better or worse your reality has changed, so you just need to make peace with it.  It is okay to be frightened, sad, angry, terrified, inconsolable, etc.  Take the time to embrace and work through these feelings, and the make peace with your new reality.  [Find a more in depth discussion on finding peace at Don't Worry It Is Okay to be Petrified]

Perspective - This challenge will also change your personal perspectives for sure.  This will occur naturally, as you move along the journey of defeating this challenge.  The most important thing to do now is to add outside perspective to the battle.  Often when we are faced with difficult challenges it is easy to get overwhelmed.  By finding outside perspective, we can find inspiration that others are also going through what we are or perhaps something even more difficult challenges.  [Find a more in depth discussion on finding perspective at Everyone Needs Inspiration in Their Darkest Hours]

Passion - When we battle a difficult challenge, (perhaps a fight for our lives) we need to have something that even in our darkest hours, gives us something to fight for.  This is different for everyone, but often will include:
-relationships with loved ones and families
- Hobbies that are personal passions
-the promise of a future we really want. 

I find that the most successful way to achieve this step is a combination of the three.  Our relationships with loved ones and promise of a brighter future provide us with the fuel we need to fight our battle.  The personal passions provide us with distraction, enjoyment, pleasure, and happiness especially in times when these emotions are required the most. [Find a more in depth discussion on personal passions at Taking Steps to True Happiness]

Purpose - When we come out the other side of a life changing battle, we will almost always want to give back.  While going through the journey, be open to all the possibilities that will present themselves to you. They will add a level a purpose to your life that you might not have had before.  This will help in your darkest hours by keeping you focused and positive. Just a word of caution, remember to always focus on defeating your personal challenge before embarking to far along the road of executing any new purpose you may have found.  [Find a more in depth discussion on finding purpose at Finding Purpose for my Life]

I truly believe that no matter what personal challenges or disasters you may face if you follow the 4 P's you will be capable of keeping the positive mind frame required to win your battle!

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Finding Purpose For My Life

Just having the belief that your life has purpose is such a powerful thing.  It builds an inner fighting spirit that can defeat anything.  This I believe is the true meaning behind the Nietzsche quote, "He who has a why to live can bear almost any how.”


Over the past week I have been working through many of the lessons and subsequent techniques that I employed to get through the initial stages of diagnosis, the difficult transition to living the life of a patient, and my subsequent personal growth.  The greatest lesson I learnt that stuck with me and got me through many of the most difficult times was finding purpose.  Now this is a super broad topic as it can mean anything and for me as time when by my act of finding purpose shifted.

In the beginning stages while in hospital my finding purpose centered around finding purpose in my own life.  It is a pretty hard thing to do actually and truthfully you can't actually achieve this just through reflection.  I didn't achieve it but through reflection I knew my life had purpose and it just wasn't revealed to me yet.  In addition, I knew that my illness would provide me a purpose once I beat it as I would want to become active someone in the fight against it.  Just having the belief that your life has purpose is such a powerful thing.  It builds an inner fighting spirit that can defeat anything.  This I believe is the true meaning behind the Nietzsche quote, "He who has a why to live can bear almost any how.”  This one quote got me through my most difficult and painful times going through chemo.

I knew I wanted to get involved in the fight against blood cancers and while I was in the hospital I kept getting all these great ideas (remember how I like to attack everything quickly still at this point).  As luck would have it I was fortunate to get to meet and have a chat with a renowned psychologist and cancer researcher in the power of thought and relaxation.  During our conversation I conveyed how I felt this happened to me to give me some purpose to give back and help the fight. He gave me some of the best advice and said I wouldn't be much good to helping if I didn't make it. I had to focus on just getting better first and then when I made it through I could shift to helping in the fight. This led me down the path that my main purpose for the next two years was focusing on myself and defeating this disease.

I still didn't feel this was enough and while in the hospital I had two lightbulbs as I call them on things that could help with the fight but not take away from my focus and 2 year purpose of defeating this disease.  The came when I was receiving some blood products and I was so grateful that someone would take the time to give so that I could live.  It saddened me though because I knew that I would never be able to give back in this regard because of my treatment, and so was born the blood challenge where I called upon all of you to give back on my behalf.

The second way I came up with to give back was this blog.  I came up with the idea that the blog could actually follow my journey (my purpose).  While my purpose was to defeat cancer it would document when I went through and any tips I found along the way that may help some other person going through this terrible disease.  As I moved through the treatments I realized this blog was so much more.  It gives an inside look into what I as a cancer patient am going through to a lot of people who have no direct exposure to cancer.  That is when I realized that my predominant readership base was not cancer patients.  As the year progressed I switched the purpose of the blog as I realized my journey could provide insight and lessons to a lot of people that aren't going through cancer as well.  Why should we have to all go through this terrible disease to reap the rewards right :)  I can do it for all of you and pass along what I learn :D 

And so that is where we stand today.  I will continue to find small things that help with my overall focus of helping combat this disease but I am still in the surviving stage so it will mainly be through this blogging forum.  I am sure as the year goes along I will find other purposes to adjust my focus to but until then I will keep doing what I am doing and continue to enjoy everyday the best I can.

PS I am still waiting to hear some of your hobbies that you will try this year in order to add passion in our lives ;)  Take sometime to reflect on what the purpose of your life.  It doesn't have to huge and change the whole world.  Changing your world or someone's elses is just as huge.  Don't let this cartoon become you :)

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Taking Steps to True Happiness

I wrote last week in, My Leukemia’s Poetic Justice, I had a really difficult time getting used to the slowed down lifestyle when I got out of the hospital.  One of the main reasons for this frustration was my illness had forced me to stop doing most of the things I was accustomed to and loved.  Walking everyday did help with my adjustment to the slower lifestyle but that isn't the whole story.  During this time I took a step back and did a lot of reflection.  From this I realized I needed to find some new passions in the form of hobbies. 

I have always been a big believer in always learning something new and adding new passions to your life.  It is actually scientifically proven that by continually learning new things, your brain actually gets more of a workout and keeps more synapses open.  Our brains are magnificent computers but they are designed to streamline their processes so they can work more efficiently.  As they do this streamlining they close down synapses and reduce the amount of active neurons.   By working our brains out more we keep more of these active neurons open.  Aside from the scientific side, continually trying new things keeps our lives exciting.  I have tried many new things over the years, some I loved and I almost immediately moved on from. 

Once I realized I needed some new passions, I began brainstorming new things to try.  The problem was my illness was very limiting in what I could do, so I had to really be creative.  I always wanted to learn to sail, so I actually tried a sailing course.  Unfortunately after my first lesson I realized my lack of strength due to my treatments made it too dangerous for my health for me to continue.  Thankfully I explained my situation to the sailing school and they gave me a full refund. 

I realized I needed to try something that would use a little less energy.  It was actually out on one of my walks that I thought of the hobby that blossomed into one of my biggest passions.  While walking I realized that everything I had been had changed my perspectives and now I found I looked at things differently than I had before.  So I thought I would try photography to see if perspective of the world would translate into great images.  I ordered a starter camera just to try it out.  I fell in love my first time out and have upgraded my camera since.  The hobby has now turned into a fully fledged passion where I spend endless hours reading up on photography techniques and learning to become better at my craft.

Going into the hospital for the transplant I knew when I came out I would have to find hobbies and passions again.  What most people don't know is I actually sold my camera and lenses the week before I went in for transplant.  I just knew that I wasn't going to use it for awhile and I had interest in changing around my camera setup anyways.  It was the best decision I ever made because since getting out of the hospital I have had so much fun researching and planning out my new camera system.  When I sold the camera, I always knew I would replace it but wasn't sure if I would upgrade to a different camera body or not.  I decided to go with same camera body and change my lens setup.  While at the hospital on Friday I actually had someone meet me at PMH and I got my "new" camera.  I am so excited to start taking photos again and start on my 2011 collection.  For those that haven't seen my pictures from last year here is a link to what are my favourite pictures from 2010 - Aaron's Photo stream

Adding hobbies that can translate into passions in our lives adds so much joy.  I believe it is essential to have individual passions to achieve true happiness.  Don't force them though; keep trying new things until you find what you love.  Once you get bored, move on to something new.  Also remember to push your boundaries and put yourself outside of your comfort zone.  You will learn so much about yourself in doing this.  I once took swing and salsa dance lessons by myself because I wanted to see if I would enjoy it.  Now I was supervising at the time and once my shippers found out I was given the gears pretty hard, but I really had to push myself out of my comfort zone to do it.  I ended up not liking it too much but was so happy to have tried it and I definitely grew personally from it. 

Being that it is a new year I think each of you should make a promise to try something new this year.  I promise it will add so much happiness to your life this year! So come on, think of something you want to try and post it to the comment section. 

I look forward to hearing about everyone's new hobby!

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Attitude for achieving Greatness (Sunday Dialogue)

This week I reflected a lot of the beginnings of my journey.  I came across this quote awhile ago and thought it was so powerful.

"No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit." Helen Keller
What do you think about it?  Do you agree with the message, do we have to optimistic in order to achieve greatness? 

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