Update - Bone Marrow Transplant 1st Doctor Visit

Today I wanted to use this forum to give everyone an update.  I am sorry that I didn't email everyone but this is much easier than emailing and it ensures that I don't forget any information when relaying the information.

Yesterday Amy, my mom and I travelled to PMH to meet with the transplant team.  I went in with the hope of coming out of there with some definite timing but came out of there with still no idea on that front.  That was more my mistake in that I didn't know the process properly. 

The first meeting is more of a meet and greet where you meet the nursing coordinator and transplant doctor.  The true purpose of the meeting is they have to go over all the potential risks and complications with the procedure and get your definite consent to move forward.  Let me tell you, there are a lot of risks and complications with this procedure.  I knew from researching that there was a lot of them but when hearing them from the doctor they sounded so much scarier.  Plus it sounded like the list was never going to stop :) The risks are anywhere from graft versus host or rejection, to developing another form of cancer, having a relapse in my disease, a serious infection, right up to death.  I have to say that I didn't expect to be bothered by hearing the complications as much as I was.  They were much scarier hearing them than I ever expected.  The whole time I had to keep reminding myself that Al went through the same procedure and he is living a normal life.  It also got me thinking back to my first diagnosis and if when they told me the risks and complications then if they were as scary.  That whole time is a blur so I don't really remember it but most of the risks and complications are the same as that time around so I continually was reminding myself that they have to tell me all the worst case scenarios so that I can make an informed decision but that I made it through the first go around fairly unscathed.  Regardless of the risks, I have made the definite decision to proceed forward with the transplant. 

Now they begin the contact with the donor.  There is still a chance that the procedure will not happen in the next couple months because of the donor.  This is the first time the donor has been contacted they tell me so the donor can still back out of the procedure if they want.  Also the donor has to pass a physical that says the transplant will not be a danger to their health or mine.  If the donor agrees to do the transplant and is capable they will agree to a date and then the ball will get rolling.  The date of the transplant is all based on the donor.  I am figuring it won't be until the new year but the still is a chance that they could call me in the next two weeks and tell me the transplant is happening in one of the first three weeks of December.  We got some great news on the donor front yesterday.  They have actually found two donor matches for me!  I feel blessed to have two because it means I have a backup if the first donor doesn't want to or can't do the donation.  It makes me feel very lucky because many people can't find one donor. 

Once the donor has set the date of the transplant everything gets moving.  Before the transplant I have a tonne of tests that have to be performed.  I have to get my bone marrow checked again. This means both an aspiration and biopsy done.  I am really not looking forward to this as it hurts and is extremely uncomfortable.  I had made my peace with the aspiration but the biopsy was a curveball I wasn't expecting.  For the biopsy they actually break a chunk of your bone marrow out of your hip bone.  I am looking forward to it less because it takes longer to heal and feel normal afterwards.  The other tests are another LP to check my spine for no leukemia, a trip to the cancer dentist to make sure I have no work that needs done, my heart needs to be checked to ensure it can handle some of the chemotherapy agents, and they check to make sure my liver and kidneys are functioning properly.  Once all the tests are done I will be admitted to the hospital 7 days before stem cells are transplanted into me.  In this 7 days I will undergo the intensive chemotherapy and 6 full body radiation treatments.  After that it is a waiting game for the stem cells to take hold in my system and start producing blood cells and immune cells for me.  Once they are producing the cells and I can take all my medication orally I will be discharged.  There is a fairly long recovery after the procedure but it is more dependent on the complications.  The less complications I get, the faster the recovery.

On to the complications.  The big thing risk with this procedure is graft versus host disease.  It is with almost 100% certainty I will get this complication.  This complication has many severities from mild to severe.  The coles notes version is after the cells are transplanted into the system the donors immune cells see my body as foreign objects and begin attacking them.  The severe types are when they begin attacking my organs.  I will  be on a lot of immune suppressant drugs to give my body and new cells times to make friends and coexist.  The other risk is the chemo and radiation could damage my DNA in such a way that I develop another form of cancer.  Also since I will be taken down into a neutropenic state (I have no immune system) I am very susceptible to infection.  These infections can be very severe as you have nothing to fight them off with.  When you here of people passing away from leukemia it is often from a severe infection. 

All in all it is a scary process but one that I am mentally prepared for.  I made it through the first go around fairly unscathed and I intend to attack this round with the same attitude as the first time.  I will update you all when I know more on timing.  Also on a side note many people have had trouble posting comments on this site, so I will be doing a comment posting tutorial post this weekend so look for that.

Have a great weekend,
Aaron

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What do you want to do before you kick the bucket?

Dying with regrets is not at all unusual. To avoid a sad and meaningless end to our life we need to remember continually that we too must die. Contemplating our own death will inspire us to use our life wisely by developing the inner refuge of spiritual realizations; otherwise we shall have no ability to protect ourself from the sufferings of death and what lies beyond. -Gershe Kelsang

Yesterday we examined whether we would be happy with our lives if we were to die.  For many of us the answer is probably no.  The reason for this is it all stems back to our unreaslistic fears of death.  Remember the key word "unprepared" in yesterday's quote. 

When we fear death by itself we often ignore it.  By doing this we have a tendency to put off things until tomorrow.  And then tomorrow becomes the next day, and so on.  It isn't until we are forced to face death that we realize, we have not done many of the things that we wanted to do.

I hope each of you did your "homework" last night and took time to reflect.  It is so important not to wait until it is too late to do this.  Not everyone is lucky when faced with a grave illness or injury, and don't get a second chance. 

Reflecting on your life and whether you are happy with it is only the first step.  The second step is What are you going to do about it?  This is where often the term of bucket list comes into play. 

I think the inspiration towards building a bucket list comes from the act of losing the ability to do something. It is ironic how once you have a limited lifestyle you begin thinking of all the things you wish you could do.

This is the key to why bucket lists are often created, the word "limited". When your life is going according to plan and you are healthy, the possibilities are limitless. You feel like you have all the time in the world, so you never really sit down and think about what it is you actually want to do.

Humans are time and time again accused of always wanting what we can't have.  This is no different.  My list stemmed from all the different things I realized I still wanted to do when I did my reflection.  Unfortunately, due to my condition and treatment, there are a number of things that I cannot do yet.   So I started keeping a list of all the items so I would not forget them when the time comes for me to do them again.

Here is a little sample:
- Learn to Sail
- Go on a backcountry canoe trip
- Complete a triathlon
- take a photography course
- Go white water Rafting again
- Go snowboarding in the Rockies
- Try scuba diving
- Try a 70oz steak challenge
- Climb the CN Tower

My list has many more things on it but I thought I would share a few of them with you.  So now that each of you have reflected on your lives.  What is on your bucket list?  I would love to hear.  Maybe we will have some items in common and we can cross them off the list together :)

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If you were to die today, would you be happy with your life?

A healthy fear of death would be the fear of dying unprepared, as this is a fear we can do something about, a danger we can avert. - Unknown

When first diagnosed with cancer you are bombarded with emotions.  One of the most prevalent themes is death.  First you are given the news that you have a disease that is trying to kill you.  Then you are given all the potential complications of your treatment.  Next you have to give your doctors and family instructions on how to proceed in medical emergencies, like do not resusitate orders.  Finally you have to create a power of attorney and personal will.  It is one overwhelming experience. 

The odd thing is, throughout the whole process I never become consumed by the thought of death.  Sure I was afraid, but who wouldn't be.  I took the attitude that death was something I had no control over.  I would follow all of my doctor's orders, be as careful as I could, and the rest was up to God. 

The night after I signed all my documents, I was reflecting and I asked myself a question that fundamentally shifted the way I thought going forward.  It was so profound that it has now become a key philosophy in how I plan to live. 

While sitting in my bed I asked myself the question "if I was to die tonight would I be happy with my life?"  After some contemplation I found myself answering no.  There was still so much more I wanted to do.  From that point on I vowed to myself that I would not be lying on my deathbed with any regrets towards my life.

The quote at the top of this post sums this up perfectly.  We should not be afraid of dying but rather dying unprepared.  For each person this “unprepared” will have different meaning.

Don’t wait until you have a serious illness or injury that makes you contemplate your life.  Start now!  Learn from us that have had the unfortunate experience of being forced to contemplate it.  Take a few minutes to yourself tonight and ask youself the question:

If you were to die tonight, would you be happy with your life? If you don’t like the answer, start making positive changes. 

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Who Says You Can't Joke about Cancer

I came across this on one of my many internet surfing the other day and instantly fell in love with it.  As I looked at it I began to reflect on its message because this is often see as taboo and not often done.  But why? 

When someone gets diagnosed with cancer the interactions with others instantly changes.  It isn't intentional but something that just happens initially.  As time progresses we usually get more comfortable around them but there is still a small bit of uncomfort.  We almost never joke about the disease because it is seen as taboo or that they have enough on their plate.

The uncomfort isn't actually from the cancer or the patient.  It is from our own neurosis.  This cancer brings up thoughts and feelings of mortality in ourselves.  This is something that we are not comfortable.  Almost all of us like to go through our lives in a bubble of naivete not pondering our mortality.  Unfortunately a cancer diagnosis bursts this bubble for the patient and often brings these thoughts forward in their friends and families.

The unfortunate thing is a cancer diagnosis is not much different that many chapters we have gotten through in our past.  Many more people are surviving cancer these days than not.  So really this is more of just a really challenging chapter in our lives.  I want you to think back to the last challenging chapter you had in your lives.  I am sure it was difficult and brought up many thoughts of potential defeat.  But during it you were able to crack jokes at yourself and the challenge.  So the only real difference is the topic of mortaility. 

Lets take a look a laughter for a moment.  Laughter is actually one of the most wonderful things our bodies can do and has a tonne of benefits for us.  First off, laughter reduces the levels of stress hormones in the body and similtaneously increases the levels of health-enhancing hormones like endorphins.  In addition, laughter increases the number of antibody producing cells and enhances the effectiveness of T Cells (the cells that eat the bad stuff in your body).  This means that laughter not only reduces the physical effects of stress but increases you immune system. 

In addition, laughter has a positive impact on perspective.  Studies have shown that our response to stressful events can be altered based on whethter we view something as a threat or challenge.  Humour gives us a more lighthearted perspective and therfore helps us view events as challenges rather than threats.  This almost always translates into a much more positive outcome. 

With all these benefits of laughter and humour it is a shame that we don't use it more in our dealings with cancer.  Just think, a cancer patient already has a tough and stressful situation.  Wouldn't it be so much more beneficial for them to view the road ahead as a challenge to be tackled, like they have done so often in their past rather than a threat to their mortality.  In addition, their immune system is already suppressed from the chemotherapy treatments they are receiving.  Having a stronger immune system and lower stress levels can only help them through this.  And the benefits are not just one sided for the patient.  The cancer diagnosis has definitely added a new stress to all the family and friends.  Everyone could benefit from lower stress and a better immune system (This way you don't get sick as often and can visit them more :) )

I am someone who doesn't mind joking about cancer.  So the next time you are with me, put the worries of mortality on the backburner and crack a joke.  Even a joke at me, if you can handle the repercussions ;)

I say lets all joke about cancer a whole lot more.  Our lives will be better for it.

Aaron

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The New Look

Hey Everyone,
I am sure you have noticed that the blog is looking different today.  I have been working for the past few days to update the look of the blog.  Actually a bunch more technical stuff too but the jist is I wanted to host all my blogs on the same provider so a redesign was needed.

The timing worked out because with the bone marrow fast approaching I wanted to have the new design up and running.

I hope you like the new blog design.  I have set up a nice service where all my new posts will be delivered directly to your email.  There is a link off to the right hand side or right at the bottom of this post.  Just click the link.  Enter your email address and click the confirmation link the email it sends you.  After that you are all set up and will recieve all my posts directly to your email.

I look forwarding to hearing what you all think of the design,
Aaron

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A Call for Help

Hey Everyone,

I was reflecting a little on this blog last night and came to a couple realizations. The first is that I have not been posting very much over the past little while (sorry :( ). The second thing I realized is when I do post, for the most part everyone seems to enjoy it.

This led me to reflect on why I don't post to often. It isn't that I don't enjoy writing the posts. For the most part I find writing the posts therapeutic and enjoyable. The real reason for the lack of posts is the lack of topics to write about. You see when I first began this blog, the whole cancer experience was new to me. But as time has gone by I have exhausted most topics to write about. I have really tried to not write about the same topic multiple times on this site so as not to sound like a broken record or bore you the reader. But I don't get as many new reflections as before and therefore you don't get as many posts.

So last night as I lay in bed falling asleep I began reflecting on ways to provide more posts and it hit me. There are many more people who read this blog that haven't been exposed to dealt with cancer than those going through it. Therefore I should be tailoring this blog to you, my readers. I realized I should be writing about what you want to read about ;)

Therefore, I am asking for everyone to provide me ideas to write about. Do you have any questions about cancer, the treatment, how I get through it, what it feels like, what I think about, etc. There literally is no topic that I will treat as taboo. So please leave a comment on the blog or email me (aaronofford@gmail.com) with your questions or blog topics. Whenever you have any idea you would like me to write about or question you would like answered, send it my way and I will do my best to answer it honestly.

So there you have it everyone, the more topics I get - the more posts you get :D

Looking forward to hearing from each of you,

Aaron

The Blood Donation Challenge Update

Hey Everyone,

I just wanted to do a quick update on the blood donation challenge. We have a few people that have donated 3 times which is leading the challenge so far.

The results of the challenge is amazing so far. This challenge has influenced a total of 38 donations so far! That is absolutely amazing. Although this number is amazing, truthfully I think it is even a higher number. I have a feeling that more people have donated but not posted their name and donation date to one of the two places where I keep track of it. Remember at the end of the challenge I can't credit you with donations if they haven't been posted because I have no way of knowing. Plus by posting your date of donation it continually motivates others to get out and donate.

So remember to please update one of the two places with all your donation dates that you have done today!

The best place to track your donation is on facebook on the group discussion board located at:

http://www.facebook.com/#!/topic.php?uid=308139518644&topic=14369

If you don't have facebook then just post a comment on the blood donation page of my blog: It is located at:

http://aaronoutward.com/blood-donation-challenge/

If you are gonna be out there donating blood you should get the credit for it too.

As for a monthly breakout, we had the total donations by month:

March: 18 donations

April: 1 donation

May: 5 donations

June: 5 donations

July: 2 donations

August: 1 donation

Sept: 2 donations

We had such a great March and either people haven't posted there subsequent donation dates or haven't donated again. Since I got the news about having to go back in for the my bone marrow transplant. I will once again only be kept alive by blood transfusions. So I ask for all your help in filling up the blood banks on my behalf so I am not a drain on the system. Remember paying it forward is one of the most important things we can do.

I appreciate beyond words everyone that has donated so far. And who knows although I wasn't a bone marrow match to anyone in our network I might receive your blood next time I am in the hospital :) Wouldn't that be something.

I hope you all have a wonderful weekend and remember to update your donations on one of the two sites and KEEP DONATING :D



Aaron

Officially a pin cushion

Hey Everyone,

I started my 9th cycle of intensification yesterday (only one more of this phase to go :) ) While there I started wondering how many needles I have actually had going through this process. If you remember before I got sick I was pretty much terrified of needles and now they are a common place in my life. So this morning I decided to sit down and approximate the amount of needles I have had. After going through it I have an approximate number. I have recieved over 70 needles so far along this journey. So now I am starting to think of myself of quite the pincushion.

The real reason this came into my mind was yesterday I realized the amount of needles I was going to have in the next 24 hours was 5. Especially since they are located all over my body the first thing that came to mind was a pin cushion with my face on it. Now that I know the true number, it is crazy to think I have had over 70 needles and that number is going to continue to grow! I think I might hit the magical century mark before all this is over.

On the other fronts things are going pretty well with me. Starting the next cycle means I am heading into my difficult section of the process. For the next day or so I will have a sore back from the LP. In addition the steriods give me a thirst that can't be satisfied and trouble sleeping. Then next week I go through the withdrawals which are always mentally tough. I am thinking this cycle will be a little easier now that I know I have a bone marrow match (I will keep you updated on how that goes).

On the bone marrow front I have a meeting with the transplant team at the end of October so I don't really have anymore information to share with all of you.

Well that is an update on me. I hope everyone had a wonderful summer and is enjoying this nice fall weather.

Aaron

An Answered Prayer

Good Morning Everyone,

Sorry for the delay in writing. It has been a little hectic past week or so. My grandmother passed away so we have been trying to get all the travel arrangements organized so that I could travel to the funeral.

Last week I entered my 8th cycle of my intensification treatment. This was awesome news because it meant that my protocol shifted a little bit. I no longer had to get the doxyrubicin chemo anymore. This is a really exciting event because that chemo can be really hard on the heart so I am happy to be done with it. Now I have a nurse that comes to my apartment to inject chemo into my butt every thursday.

This cycle was a pretty tough one. For some reason I got really mentally beaten up this week. I had intended to write to all of you earlier but each time I sat down I just didn't have the drive. I have a blog planned to try and explain what actually makes it so mentally difficult going through the cancer treatments.

The amazing thing is that when I was feeling my lowest yesterday I got news that more than brightened my day. My doctor emailed me and notified me that they have found a bone marrow match for me and the person has agreed to donate. This isn't a completely done deal as the donor still has to pass a physical and they could theorectically still back out but it is looking really good!

Having this news makes things so much easier because it gives a light at the end of the tunnel. Even if the transplant didn't happen for a long time, knowing that I have a match has re-energized me.

I hope each of you is having a great day.

Aaron

Managing An Active Lifestyle during Chemotherapy

Acute Leukemia, Acute Lymphoblastic Leukemia, Bone marrow transplant, Self improvement, Personal Growth, Daily Inspiration, ph all, philadelphia chromosome,Acute Leukemia, Acute Lymphoblastic Leukemia, Bone marrow transplant, Self improvement, Personal Growth, Daily Inspiration, ph all, philadelphia chromosome

Last post I eluded to the that I might beginning to understand how to get through my consolidation cycles a little better. I didn't say want to say too much because it was still early in this cycle, and last one was so tough that I didn't want to jinx it.

Today I am over the hump of the really hard part of my cycle and this one went much smoother than last. After much reflection I have realized that I need to be active to have better cycles. Although it seems counter intuitive, because being active just tires me out more. But I have found that when I live the sedentary lifestyle I am just miserable. I find it makes it harder to keep positive in difficult times, the withdrawals and chemo symptoms hit me harder, and my body hurts more. I am most happy when I am active and living :)

The difficult thing with becoming active is managing the balancing act of my energy. It is very easy when doing activities to remember how strong I used to be, and fall right back into old habits. I have been very cognisant of this while trying to find activities to start.

After some reflection I decided that trying back out running shoud probably be out of the question. First, it is way to easy to slip back into old habits of pushing to hard. And second, it just isn't that fun :) And lets face it, when you are looking for things to fill your time, you better enjoy them.

Today I started my first day of a new activity. My friend and I went to a spinning class this morning. I absolutely loved it. It felt so good to work out again  What made it even better was that I was in control of the output of my energy. I have a feeling that this class is going to become more a mainstay in my quest for activity.

The most difficult part of introducing activity into your life as a chemotherapy patient is being able to manage your energy levels.  Even the days that you feel great, you don't even have a fraction of the strength you used to have.  When I first got out of the hospital I was having a very difficult time managing my energy output.  I would go overboard and crash, and then just repeat the cycle.

I was still trying to really learn how to manage my energy levels, when I was given an analogy to help.

Think of your day as a big bowl filled with candy.  Each time you do something you take a piece of candy out of the bowl.  You can't put any candy back so once it is gone your bowl is empty.  The goal is to spread taking the candy out of the bowl over the duration of the day so that there is some leftover at night. 

I love the visualization this provides.  Everytime I am about to do something I now ask myself whether or not I really want that piece of "candy" or should I wait for a little bit. 

Adding activity to our lives while going through chemotherapy is an important part of our recovery process.  Just remember your candy jar and save some candy for the evening and night time :)

My Photography Hobby

Good Morning,

A little while ago I said I would start a photos of the week segment of my blog. I have been working on a way to share these with you. After much deliberation and work I have decided that this site is not the best way to share these with you. Therefore, I have decided to use my other blog site as a dedicated site for my photos.

Now in alignment with this mornings post I don't want to set the expectation that I will guarentee that I will update these photos weekly. But whenever I have great photos to share I promise to update it. Whenever I do update that site I will post here to this site so you don't have to worry about always checking two sites.

The photography site is : http://aaronofford.blogspot.com/

I do have two posts already there so please check it out and let me know what you think. I am eager to hear your comments.

Aaron

My New Promise

When I first began this blog I had great intentions of being able to write everyday. I had learnt and read that journalling is a very important part of the recovery process from an ordeal like cancer. So I decided that I could do this but instead of keeping it to myself, I could share my reflections with anyone that felt like reading. The response has been overwhelming as most of you seem to really like my writing style and enjoy my post.

Since the blog began I have moved into a couple different types of chemotherapy cycles and have realized that writing everyday just isn't that feasible. These new cycles have many days where I am feeling so down that it is difficult to have a reflection. Most of the time I am just trying to get through these days and not too worried about reflecting on them. Plus you guys can only hear I am having a tough day before it becomes whining :D So I have decided to make a new promise to each of you. I am going to write on here anytime I have a reflection or something to share with each of you. I can't promise how often this will be as I want to preserve the quality of my posts.

I have an email subscription sign-up to the right hand side of my posts that will send you an email anytime I have done a new post. This is probably the most efficient way for each of you to keep up to date with my latest posts. Or you can keep checking :)

I do want to thank each of you for your support through this. Your loyalty has provided me with the inspiration to keep reflecting on my journey through this terrible disease and find inspirations in it.

Aaron

Misinformed Perceptions - Maple Leaf Foods

Good Morning,

Today's topic is something I have wanted to share for quite sometime now. Two years ago Maple Leaf Foods underwent a recall for a number of their products due to listeria contamination. After this recall there was a lot of negative media and a great deal of public perception changed towards Maple Leaf being a bad guy who didn't worry about food safety. Still to this day when I am asked about where I work and I say Maple Leaf Foods there is almost all the time a reference made towards the listeria and food safety. Even two years later there is still the perception that Maple Leaf doesn't have the best food safety. The ironic thing about this perception is that completely wrong. The picture at the beginning of this post is my roomate and I eating breakfast while in the hospital. We are eating the microwavable bacon and sausages. What is crazy is that while everyone is worried about the food safety of Maple Leaf products we were able to eat it during our cancer treatments. During this treatment phase we were the most susceptible to all forms of bacteria and illness and yet were able to eat the Maple Leaf products. So if we were able to eat it when under the most strictest of diets, then so is everyone else :)

This makes you think, what other public perceptions are completely off base. I bet most people wouldn't think I was sick if they saw me for the first time. So next time you have a perception of something or someone, take a step back and question is that really truth or just a misinformed perception.

hope you have a good day.

Aaron

My Mount Everest Challenge

I was watching a special on TV about a 13 year old boy who just summited Mount Everest. This created a light bulb of a fundraising idea for me. I decided that I too will climb Mount Everest. Unfortunately with my condition I can't actually travel to the Himilayas but I can do the equivalent here in my stairwell. Upon researching the climbing of Mount Everest I found out that on average it takes 21 days of actual climbing to summit the mountain. This is when I realized this was the perfect fundraising effort because it has so much symmetry with my disease (almost all of my treatment cycles last 21 days). Mount Everest is a total of 8850m high so for me to complete this task I will need to climb the stairs in my building 8.5 times per day. This equates to climbing 161 flights of stairs each day for 21 days straight.

When I spoke about getting active everyday this is one of the reasons why. I will need to build up a great deal of strength to achieve this goal. Yesterday I rollerbladed for 40 minutes and today I climbed 55 flights of stairs. Although I still don't have the strength to complete this goal I am continually building up the strength to achieve it. It will be a long journey to get there but will be so rewarding when I do. Due to the heat of the summer I won't be attempting this goal for awhile because the stairwells will be too hot to complete. Plus I need to build up the actual strength to achieve it. I am not sure if this is even feasible while going through my treatments or if I am going to have to wait until I am done treatment but I will keep you all updated ;)

I really like this fundraising idea because it will take a lot of will and determination to complete. Much the same that a blood cancer patient has to have to complete their treatments. Also it is much different than other forms of fundraising because they usually only last a couple hours. I would love this to eventually become an annual event where others complete it and fundraise with me but for now we will see how year 1 goes ;) I will keep you all updated on my progress and let you know when I am thinking of doing it. First I have to build up my daily physical output :D

I hope you all have a wonderful weekend and we shall talk soon,

Aaron

Goal 3 - Giving Back

Good Afternoon, this post was supposed to be posted on Tuesday of this week.

One of the biggest changes a cancer diagnosis does for someone it is often cause one to reaccess you life and where it was heading. In my case it had me asking was I making the most of it and how can I give back. In order to make the most of my life I still trying to detemine what is my true Personal Legend and how to achieve it (those that have read The Alchemist will know what I am talking about). In the meantime I have done lots of thought of how to give back.

While going through my stay in the hospital I was given advice to really focus on my recovery before investing myself too much into giving back to the cancer community. I also realized in the hospital just how much blood is truly required by blood cancer patients. I also found out that I could not give any blood which was a little disapointing. Instead of using this news to get me down I decided to use to inspire all of you give your blood and the Blood Donation challenge was born. It has been a great success so far but I still ask you to keep giving.

The second way I figured I could give back was through fundraising. Once I am healed I do intend to things like the Relay for Life but this gives to the Cancer Society. Unfortunately the blood cancer world does not receive the same support as the big cancers. Because of this I want to focus my efforts on fundraising for the blood cancers. I already have one plan in the works that I spoke about in the power of a goal post. I intend to climb the stairs of the CN tower and raise money for the Blood Cancers. Because everyone is being so selfless in their donation of their blood I want to make sure my fundraising activities are equally inspiring for people to donate into. That is why I will use intend to physical activity like the CN tower climb to achieve this. I will come up with other plans for fundraising as well so stay tuned ;)

Goal 2 - Completing my New Years Resolution

Good Afternoon,

Sorry this post was supposed to have been posted on Monday of this week.

At the beginning of this year I had set a new years resolution goal of losing 30 lbs over the course of the year. I had great success in the month of January losing 10 pounds then my world was turned upside down and was diagnosed with leukemia.

Now that I have gotten into a bit of a groove of my treatments I intend to pick this goal back up again. While in the hospital I did lose the remaining 20 lbs required for my goal but this was not a sustainable weight lost. First, the bulk of my weight loss was from my body eating away at its muscle mass. Second, when you get out of the hospital you felt so imprisoned and the food was so bad that you go a little crazy. :)

Many people would say that my circumstances could grant me a pass on achieving the goal but I still want to follow through. Therefore I have developed two techniques to achieve it. I am not going to go on a hardcore diet like I did in January because food is a passion of mine and I need to keep some indulgences going through this :) But I do intend to cut the junk out of my diet and eat healthier.

The second part of my plan is to increase my activity level to doing something every day. This will serve two goals. First I think it will really help with my cancer recovery. The release of endorphins really increase your mood after completing physical activity. The hard part is getting motivated when I am in the valley of my treatments. That cycle I managed to get out on one of my down days. This one I will try for more. Secondly, achieving this goal will help build my strength up to achieve my fourth goal that I will talk about on Friday.

Inspiration Comes from All Over

For most people a cancer diagnosis causes you to take a step back and reaccess your life; are you happy with it to date, doing what you want with your life, living all of your dreams? The cancer diagnosis adds a mortality to your life that often many people do not think about until they are older. Many people I have talken to and read about use the cancer diagnosis as the catalyst they need to add more meaning to their lives. It so easy to get caught up in the hustle and bustle of our lives and work and forget the things that make up happiest or put dreams on hold. I think the cancer diagnosis just brings a reality that we aren't going to live forever and that we need to focus on the things that make us happiest now.

One of the major techniques I have used throughout my battle is seeking counsel and inspiration in the words of others. I have spoken before about how the battle of my friend from high school who suffered a paralyzing neck injury inspired me while in the early days of my diagnosis. In addition, many books have given me inspiration and lucky for me I have found a perfect inspirational book for each stage. As I have written before Lance Armstrong's book got me through the diagnosis stage of my battle, and Man's Search for Meaning gave me a lot of strength for getting through my induction therapy.

Since I have been out of the hospital I have been looking for inspiration and meaning. A friend gave me one of their favorite books to read and I absolutely love it. She gave me The Alchemist and I have read it twice. There are so many wonderfully inspiring parables and quotes throughout the book; so many that I can't type them here. But the jist of the book it to always follow your dreams and to live for the moment.

The living for the moment idea is something we here often but it something that is very difficult to do. In addition, it is a bit contradictory to the message from Man's Search for Meaning. I think to be most successful we need to have a mix of both. When going through truly difficult and painful times we need to heed the message of setting goals and looking to the future but we cannot forget the present because that is where the true beauty and happiness lies.

So if you haven't read The Alchemist get out there and get a copy. It is a very short read (only a couple hours) but I promise you will be inspired

Goal 1 - Death of my Saviour

Happy Canada Day! I hope everyone is enjoying there much deserved day off.

Yesterday I posted about the importance of living for the future especially when you are going through tough patches. I also eluded to a couple of goals I have set along the way to help me stay focused on the future. The next couple days I will focus on sharing a bunch of those goals.

The first goal I set is something that is been lingering for months now. For those that know my story know that the reason I was diagnosed so quickly was not because I was showing some of the dangerous symptoms but rather I was getting a plantars wart treated and during treatment a fairly inconspicuous symptom was recognized. Too many, myself included, this plantar's wart was considered a miracle wart because without it who knows how long I would have gone undiagnosed. In fact I could have died had I not had it. I have decided though that it was time to part ways with my tiny little saviour so for the past couple weeks I began treating it again. I wasn't allowed to treat it for a couple months while I was going through the heavy treatment cycles so it allowed all my progress before I was diagnosed to be nullified. But I am determined to be of this pest.

Unfortunately for me the treatment is fairly painful and not something I would wish upon an enemy (those who have had one know what I am talking about :) ) There are some days that it actually hurts too much to walk much. This actually makes the cancer treatments a little harder because even on days when I want to go out walking there are sometimes I can't. But short term pain for long term happiness is always better so I keep pushing on through :)

Unfortunately my picture of the week section has taken a little bit of a beating because I haven't been able to get out to take many pictures. I promise that once healed I will flood the site with my photography :)

I hope you all have a wonderful day and enjoy the fireworks tonight. I know I am looking forward to them.

Aaron

The Roller Coaster

Good Afternoon,

I have not posted in a little while and thought I would offer some insight as to why. Last week was the tough week of my treatment. It happens every cycle so you would think by now that I would be a pro at dealing with it but each cycle it hits me just as hard. Truthfully each cycle it gets worse.

The cycles themselves are I liken to a roller coaster. In the first 5 days you are injected with the chemotherapy drugs and take very high doses of steroid. In the first 5 days there isn't very much side effects, so I am not sure whether it is just the chemo takes sometime to do its damage or whether the steroids are propping me up. I am sure it is more a combination of the two. The first five days are like climbing that first big hill of a rollercoaster. Each day you get closer to the point where you are going to plummet back to the earth. My final dose of steriod is Monday morning and so by the evening you start to feel the effects slowly. After that you crash pretty hard until about Friday or Saturday where you start to feel better. I am not going to get much into the exact symptoms because even those change but needless to say when I am going through that part of the cycle I don't really want to do much. So if anyone was wondering why you haven't heard from me in a bit that is the reason.

There were some positives out of the cycle. Last Thursday I got out for a rollerblade. That is one of the first times I have gotten out for some physical activity in my down week. I am hoping to increase that to some sort of activity each day regardless of where I am in my cycle. I think it will take some mental battling to do it but I am confident that by the end of all this I will achieve it.

When I say each cycle it gets worse, it is not physically the symptoms are getting worse. It is more mentally. The tuesday and wednesday are usually the bottom for me in which I am at my weakest point mentally for the process. After that everything usually starts to slowly get better until you get to the week we are in now. From this point until I start my next cycle I usually feel much better and have normal energy levels.

Well hope that gives some insight into what I go through when things are rough.

Aaron

The Power of a Goal

Good Afternoon,

I have always found that we are most successful in life when we have a goal to work towards. This lesson can be applied to almost every aspect of our lives. In my past I have always been most succesful when I have been focused on something. I think it is because by focusing on something it gives us that extra motivation when we need it.

On the way back to Trillium Hospital from my diagnosis at Princess Margaret I actually set a goal for my journey. While lying in the stretcher in the back of the transfer ambulance leaving Toronto the only site I could see was the CN tower out the back window. It was then that I decided that I would climb the CN tower before the end of 2011. I have looked into it and there are only 2 times a year that I would have the oppurtunity to climb once in April and again in October. Each time is for a different charity. My intention though is to give the charity the minimum amount to get registered and then fundraise on my own for Leukemia research. So look out in the future for more information. Unfortunately I can't select a date because it will be very dependent on when I will be getting my transplant.

In the meantime I have begun to train for my journey up the Tower. Right now I am just focusing on building my strength and endurance. I have 5 different activities that I will alternate to do this: a 45 min Kempo karate workout, going for walks, bike riding, roller blading, and stair climbing. I will use the kempo karate, roller blading, and biking to build up my endurance and aerobic capacity. The walking will be nice for days when I don't have as much energy but will still enable me to stay active. And finally climbing the stair case in my building will be the event specific training to build up my strength for the 500m ascent up the CN tower. I think it is somewhere between 120 and 140 flights of stairs that I will have to climb. This Monday I actually started my training and climbed the stairs in my building. I actually surpised myself and was able to climb 35 flights of stairs! Only a little more to go. :)

The reason I am sharing this with you is because I think goal setting is a really important thing to do whenever someone is going through cancer. I have found it gives a purpose to keeping active (and everything I have read is that physical activity is really important to cancer recovery). But someone's goal doesn't have to be a physical challenge. I have just chosen that because physical activity has always been an important part of my life. But I have also taken up the hobby of photography. It gives me a reason to get out of the apartment and see the world in a different manner. I hope to become a much better photographer as the summer progresses. And you can see my progress as the week goes along. Just be sure to check out http://aaronofford.blogspot.com/p/pictures-of-week.html

I think the important thing for a cancer patient is finding goals and hobbies that keeps your mind active and focused. It is very easy to sink into a very isolated lifestyle which would make it very easy to slip into a depression of some kind. My advice is get out there and enjoy this beautiful world. We were given the gift of re-examing our lifestyle and the time off work for a reason. Let make sure we make the most of it!

Talk to you soon

Aaron

A New Hobby

Hey everyone,


I have been talking for weeks now about how I have been looking for a new hobby to give me something to do during the day. I have found a few activities. I have started rollerblading and going to the golf range. I still intend to start up golfing at the course soon now. In addition I want to give spinning a try. I also intend to finally move my bike from my parents house so I have a little more mobility down here in port credit.

Last Thursday I also started a new hobby. I got a DSLR camera so that I could take up the hobby of photography. I have always loved photography, and found my true love for it when my friends Jonathan and Kristi asked me to photograph their wedding. That started a the fire of passion towards the hobby that has been smoldering deep within for a couple years now. I figured now is the perfect time to reignite the flame so I have gotten a proper camera to take up the hobby. It is a perfect hobby because it allows me to go out for a walk and document what I see. One of the main reasons I thought to take up the art of photography was that I thought it would be neat to photo document the new way I look at the world as I move through this journey and it is an excellent excuse for exercise. I also now have my bike in Port Credit which will allow me to have a greater range to take pictures in. I will use this blog to add my favorite pictures and any reflections that come from them.

Stay tuned..

What I Find Hard with Leukemia Treatments

Good Morning,

I thought today I would reflect a little on what I have found to be the hardships of treating cancer, in particular leukemia. When I was first diagnosed I did a lot of reading on what to expect from the treatments. Many of the things I read produced a very doom and gloom scenario of how difficult the chemo treatments are and how terrible the side effects were. Now don't get me wrong the induction therapy was one of the most difficult things I have undergone in my whole life and by no means I am looking forward to another round of intensive in patient therapy but it was not the hardest part of this process.

What I have found to be the hardest part is the duration and structure of the treatment. One of the books I read when first diagnosed was Lance Armstrong's book. From that book I learnt that he was completed his protocol in three months. Now I would never take away how difficult his protocol probably was and don't wish to compare horror stories but I have already been getting treated now for four months with no end in site. To be truthful it isn't the actual length of the treatment that is the most difficult, that is only a factor. Knowing that I still have endless months of treatment can get overwhelming at times but I like to think I am very mentally strong person and can handle this.

The hardest part is the roller coaster effect of the treatments. You see I like to think of the protocol as a roller coaster. The first week is usually the toughest part of the treatment. I spend my first five days on a very high dose of steroids. These leave you with an unquenchable thirst. One day last week I drank 5L of liquid one afternoon/evening and was still parched. I paid the price having to go to the bathroom every 30 to 60 minutes all night long :) The steroid dose finishes on Monday. That is the beginning of the toughest part of the protocol. I find I start to feel some of the exhuastive effects of the chemo I was injected with the previous week and in addition I start to go into steroid withdrawal. This withdrawal isn't as bad as the prednisone but it hurts more. It leaves you with very sore muscles all over your body. The final tough thing in the process is some of the pills require so much structure around taking them in that they have to be on an empty stomach. So I have to dedicate three hour windows each everning after dinner to take these pills. It isn't that this is particularily difficult or painful, what annoys me the most is all the structure that it involves. There have been many nights where I hit the two hour mark and kind of want a snack but starve for an extra hour just so I don't have to start the waiting again. Then there are some nights I eat and have to go to bed later :)

Once you get through the first week the protocol isn't too bad. And expecially now that the weather is so much nicer. I still find I have to actively search for things to keep me busy and not go crazy of boredom but I am getting much better at that. By the time the end of the third week rolls around I actually don't feel like I am sick whatsoever. This is what makes this treatment so hard though, just as soon as you feel slightly normal and stronger they knock you back down and you start the process again and this combined with the knowing there are many months ahead of this same process that makes it the most difficult.

I hope this provides some insights on what I find to be the most difficult aspects of my treatment. I know many people are curious as to what it is like going through this process but can be to shy to ask questions like this as they think it is too hard or personal for me to talk about.

I hope you all had a great weekend. Talk to you soon,

Aaron

The Cancer Patient Gainback

Hey Everyone,

While in the hospital I lost quite a bit of weight, 23 lbs in total. Since getting out of the hospital I put back on a good amount of this weight. I expected to gain some mass back as I started gaining back muscle mass but I also didn't exactly eat healthy my first month out of hospital. I was so restricted in my in hospital diet that my first month was dedicated to eating every craving I had and as much of it as I wanted. When in the hospital I heard from many patients that they all gained back all the weight they lost in their first month out of the hospital, I for some reason did not think it would happen to me. Call it delusion or just false hope, but it did happen to me. I have titled this post the Cancer Gainback because this common occurence of gaining back all the weight you lost reminded me quite a lot of the Freshman 15 (which I was victim of :( ) For those that were curious, I was also a victim of the Olivieri 15 as well. Try working in a pasta plant and not gain weight though, I dare you :)

Two weeks ago I made the decision that I would do something about this weight gain as I was not happy with it and it didn't fit into my new years resolution for 2010. I had the goal of losing 30 pounds by the end of the year.

My plan was not to specifically diet but more watch my portion sizes, eat fairly healthy, and add low calorie foods to fill up on. I have no intention of cutting treating myself out of my diet, I just realized I didn't have to do it every night of the week. Now I try to treat myself to something not as healthy at least once a week, to eliminate the diet feeling. Being in control of cooking your own food the other 6 days of the week makes it fairly easy to control how healthy my diet is. I am eating healthier but by no means am I doing it at the expense of flavour.

In addition to eating healthier, I have been trying to get some more exercise to build back up some of the muscle strength I lost during my hospital stay. I don't have a weekly plan on how much exercise I want, it is more dedicated around getting out for some form of physical activity when the weather is nice and when I have the energy. In the past two weeks I have gone rollerblading, to the driving range and went on many walks.

These changes are already starting to show some positive aspects in my life as I have lost 6 lbs in the past two weeks with implementing these changes. It isn't about dieting but continuing to live a healthy lifestyle and achieving my 2010 resolution. Cancer or no cancer I will achieve that goal. :)

I would love to hear of any positive changes that you have implemented in your lifestyle this year.

I hope you all have a great weekend and enjoy this beautiful weather.

Until next week,

Aaron

No Sibling Match

Hey everyone,

I hope you are all doing well. I am here sweating like a waterfall as they haven't turned the ac on in the building yet. We are hoping it is one sometime next week. Dora even doesn't like the heat, she spends most of her days and nights lying on the floor in front of the sliding doors.

Yesterday I was at PMH beginning my next round of intensification and had a doctor appointment. We found out some news that is a little disapointing. Dr Schuh informed us that neither of my siblings were a genetic match to proceed with the related bone marrow transplant. It is a little disapointing because we can't move forward and complete these treatments quickly. Dont' worry I am not taking it too hard. The percentages of one of them being a match was very low so I didn't have my hopes to high. Now we have initiated the un-related bone marrow search to proceed with the transplant in that manner. So everyone who isn't registered in the one match database and can be please go out and register. Even if you aren't my match, you might be someone else's match and have the oppurtunity to save someone else's life.

Well I am off to brave the outdoors and enjoy the beautiful weather. I will try to write another message tomorrow.

Enjoy your day,

Aaron

The Past Week

I must admit I have not been the best at posting to this lately. Every week I start off saying that this will be the week that I post more but it never happens. Starting this week I decided that I would be more specific and set the goal of a minimum of two posts. Tomorrow there won't be one for sure as I will be at PMH for the day visiting my doctor and receiving my next dose of chemotherapy (I believe it is round 4).

The past week has been a very good one for me. Last week I started the week hitting a half bucket of golf balls with a friend just to see how it would feel. I was really hoping the cancer would have no ill effects on my golf game and I was pleasantly surprised. Once I got the rust of not swinging my golf clubs for a year, I actually hit them quite nicely and have kept the same power in my swing as before I was sick.

Tuesday I decided to go for a rollerblade. I went for about 40 minutes along the Lakeshore path. It was so nice to get outside. I didn't push it too hard but I did have a nice leg burn by the time I was done :) Wednesday I went back to the driving range and this time I ordered the jumbo bucket. I wanted to see what my stamina would be like. I did tire by the end but no more than I used to before I was sick. In addition, I was hitting the ball beautifully. I got two new clubs this year, a hybrid and lob wedge. With the hybrid I was hitting the balls beautifully, with the wedge not so much. Although truth be told I didn't hit the balls nicely with any of my wedges. I guess I will have to have another session on the range with them before I go out for a round.

After last week I am confident I will be able to play a round of golf now. Granted I will have to take a cart because I don't have the strength to walk for that long but I am very happy with where I am at. So anyone looking to play a round drop me a line and we can set a time :)

By the time Friday rolled around I crashed. My intention was to try out spinning Friday morning but when I woke up I knew that was not in the cards. I ended up sleeping most of the day. As for the weekend, it was a nice low key relaxing weekend. Which brings us to today. I intend to go for a rollerblade this afternoon to enjoy the nice weather. It is so beautiful outside and I wouldn't want to miss it. Especially since I am entering back into the beginning of a chemo cycle and you never know how much energy you will have after chemo.

I hope you all have a great day and you at least get to see how gorgeous it is outside. Talk to you later this week

Aaron

And the Leaders Are

We have two leaders in our Blood Donation Challenge; CINDY LANDRY CRYNE and NATALIE BEATTIE. Both have now successfully given their second donation of life giving blood. A big thank you ladies! For everyone else, there is still time to get in this competition so please get out there and donate. On a side note I have not heard from any of my fresh prepared foods colleagues yet, are you all afraid of needles :P

I hope everyone has a great weekend!

Aaron

Quick Update

Good Afternoon Everyone,

Sorry for the delay in this, it has been awhile since we spoke last. So I thought I would use this post to update everyone on what is going on with me.

Today was a little bit of a weird day for me. It was the first week since I was diagnosed with leukemia that I didn't have to go to the hospital. Last week at my appointment with my doctor we started the second consolidation phase of my treatment and he informed us that now I only have to go back to the hospital every 3 weeks. The reason I say today was weird for me is that the trips down to the hospital actually kind of break of the week for me and give me a social aspect. Dora just isn't the best conversationalist :) I will still hang out with my mom on Wednesday's just going to have to find something else to do other than waiting to receive treatments at the hospital. I am sure there will be lots of wednesday golf in the future.

I have actually been pretty busy the past week. Last friday I went to surprise everyone at my office for their potluck. It was great to see all their faces again. I only wish I had more time there to visit with everyone. I guess next time I will have to keep it less of a surprise and book catch-up meetings so I can fit more visitations :)

On Saturday I attended a sailing course. I have been looking for different things to do to break up the monotony of being home and I thought maybe sailing might be a fun thing to learn. It turns out that it is a little too much for me so I only attended the one day. In addition the weather was horrendous, it was cold, rainy and Lake Ontario felt more like I was a crab fisherman on the Berring Strait. We were sailing in 10 foot waves! Talk about a crash course in getting your sea legs. I still want to learn to do it one day it just isn't in the cards for me right now. I am looking for a leisure activity that I can do with friends or by myself and I just couldn't see myself sailing solo right now.

I sold my car last night! As of tomorrow I will be carless for the first time since I was 16. I am a little sad to sell it but it just didn't make sense to keep the car when i barely use it. It is a weird feeling though, almost a loss of independence. There may be a chance you will see me with another car this summer but it will be a beater. I joke with Amy that I am going to get a 1980's Caprice classic, but little does she know I am serious. She thinks when I am talking about buying a boat I am mean a boat for the water....secretly I want my first car again :)

Other than that nothing too much new to report. I have had some fatigue this week but that is normal with just having been giving the chemo last week. I feel my strength coming back on a daily basis. Now I am just trying to figure out different things to do that I can use to pass the time. Anyone with any low cost suggestions please let me know. I am planning to try spinning in the coming weeks. So I will let you know how that goes, I better go out and get myself some Lance Armstrong gear :)

Well hope you all have a good day,

Aaron

In Memory of...

Good Morning Everyone,

I wanted to take some time to share some sad and disturbing news that I found out while I was in the hospital yesterday. One of the gentlemen that was in the hospital during my time there passed away on Tuesday. It is extremely sad because he was only in his 30's. He had been released from the hospital in remission but his leukemia came back. What makes it worse is they had found a bone marrow donor for him but couldn't transplant until they got him back into remission.

I think what makes it most difficult to hear this news is it brings a crashing reality to my own situation. Although we always have to remember that every person is different and the way they react to treatment is different too. The events of Tuesday still remind me that I do have a deadly disease and life is a gift. The saddest part of the whole situation was the doctors told him and his family there was nothing they could do, so he was just waiting to pass away. Yesterday I found myself wondering what was going through his head. I found myself putting myself in his shoes and asking if the roles were reversed what would I be thinking of knowing I didn't have long to live. I wondered if I would have been happy with the life I had lived to date. I couldn't imagine how hard that must have been on him and his family.

I didn't know this gentlemen all that well, I only talked with him once or twice but he had a very lasting impression on me. On my first night at the PMH I was very scared of what was going to happen to me. I was really frightened because I had no idea what to expect from the chemotherapy and even the staff. This gentleman was in the hospital when I first arrived and I will alway remember him in the hallway joking around with the nurses and having a great time. It was at that moment that I realized he was very similar to me and that I would do just fine going through the treatment process. He gave me a lot of strength to get through one my darkest hours and for that I am eternally grateful and would like to thank him.

It is hard not to think of the similarities that I share with him and get worried for my health when we hear news like this. Although it would be naive to think there isn't a chance something bad could happen to me, it isn't a way I would want you to live your life. We all need to keep our positive outlooks on things. We knew coming into journey that we were going to meet people who passed away, that is the nature of joining the cancer network and Tuesday is a shining example of this. I think instead of letting these events bog us down with fear and worrying we should let it inspire us. It is a reminder that life is short and can be taken from us at any moment. We should ask ourselves, have we lived the life we are proud of. If you answer that question and have things that you wish you had done, create your own "bucket list" and get out there and do them. Remember life is short.

I hope everyone has a great day,

Aaron

A Need for Perspective

Good Morning Everyone,

It has been a little while since I posted here and apologize for that. It has been a pretty tough past couple weeks for me. Not due to physical ailment but mentally it has been very tough. . Throughout this process I have become pretty good at being able to deal with being physically down but haven't had too many mental down moments. It wasn't one thing in particular that got me down but more a collection of "evils". As time goes by while fighting leukemia there are little things that get to you. For instance, two of the biggest things are never having feeling or sensation in your fingers and toes or having constant aches in muscles that really have no reason to ache.

I think the biggest reason for my mood was my own doing though. I knew that I have a very long journey ahead but I think it really set in in the past couple weeks. To get through this journey I knew that I had to find hobbies that would help me pass the time so that my home would not become a jail sentence. So I think a lot of the issues were caused by me trying to figure out what hobbies I could actually take up that would inspire me and make me happy. And you know what they say, you can't force creativity. The more I tried to figure it out, the more unhappy I would feel.

Thankfully life always has a way of balancing the scales. What I really needed was some new perspective. This was provided to me when I was at PMH for my appointment on Wednesday. I found out that my old roomate Tony did not achieve remission and had to start his induction therapy over again on Tuesday. What a realignment of perspective that was for me. Here I was depressed about being stuck at home, when I forgot that at least I was at home. Here my friend was being forced to stay in the hospital for another 30 days.

Don't worry, I am all good now. I have found my summertime hobby that will inspire me for years to come (will write about that another time :)) and I am counting my blessings again. I think it is very easy for us to slip into routines and only see the bad things. This mental state can easily snowball and bring us down. I know for me to succeed in this battle I am going to have to constantly remind myself of the blessings I have. I hope each of you can take something from this and find the small blessings you are thankful for in your life. Those are what count.

I hope you have a good weekend,

Aaron

The Presense of Thought

Good Morning Everyone,

It has been a bit since I posted last so I thought I would give everyone an update on the what has gone on. This week has been busy for me. I was down at PMH on both Wednesday and Tuesday.

Yesterday's visit was to get some blood work done, visit my doctor, and have another LP done. After my visit with the doctor we decided to move forward into the next phase of my chemotherapy cycles as well so yesterday I received two doses of chemotherapy and moved into day 1 of my first intensification cycle. I still have two more LP's to complete to fully complete my CNS phase but the will be administered in the next two weeks as long as the head aches aren't present. Yesterday was another clear example that to make it in the health care industry patience truly is a virtue. You spend more time in the hospital waiting that you do being treated but it is definitely nothing to get angry about because there is really nothing you can do about it.

On Tuesday I was also at PMH. I joined a course called "The healing journey". It is a six phase course in which there are weekly classes for each phase. The phase length can be anywhere from 4 weeks to 9 weeks in duration. This course is designed to actively work on healing yourself from the mind and interior outwards. Most of medicine just focuses on the external, this course works on focusing on the internal. The leader of the course is extremely intelligent (he won an Order of Canada for his work in this field) and in addition is a cancer survivor.

The first phase is mainly looking at techniques to help cope with cancer mainly looking in relaxation exercises. But we also have begun talking about the mind and how powerful it truly is. A thought provoking example was presented to us that I wanted to share with each of you. We may walk into the doctor's office feeling fairly well and not unhappy with life, and walk out an hour or two later (or in most cases a day :) ), having been diagnosed with cancer, feeling filled with despair and hopelessness. Nothing has changed materially since you went in the doctor's office, except for the thoughts in out minds. It is often said that it is not the cancer that makes you depressed, it's your thoughts about it and what you think it implies.

I found this example to be really powerful especially having experienced this example in my life. But then I got to thinking as well. There are so many things in our lives that we over exaggerate in our minds and let ruin our days. I think it would be prudent for all of us to remember this example, the presence of cancer has nothing to do with the change in our behaviour, it is the presence of thought and more specifically the type of thought we choose to think about. So next time you are having a depressing moment try to think about what thought is actually causing that emotion and try to reverse it to a more positive thought.

I hope you all have a great day today,

Aaron

The Bright Side of Disappointments

Good Afternoon Everyone,

I hope everyone is having a nice day so far. I have enjoyed a much better day than I have in the past week. My headaches aren't not nearly bad as they have been. It is hard to say if they are actually going away though, today I have relaxed a lot which keeps them at bay. In addition, my doctor gave me pain killers stronger than morphine, so when I do feel one I pop two of those bad boys and "see ya later headache" :)

Today I wanted to touch upon something that I have learned going through this journey; dealing with disappointment. There is someone in our network today who is having to navigate themselves through dealing with a disappointment so I thought it would be good to share my reflections on this subject.

To say that this journey I have been on has been filled with disappointments would be an understatement. The thing I have learnt is that disappointments come in all shapes and sizes. I have had big ones, like learning in February that I wouldn't be starting my new job at Maple Leaf as planned but rather would be taking a detour to fight cancer. To smaller ones like learning my leukemia was positive for the Philadelphia chromosome. This second disappointments really didn't change anything for me but it was still another blow that I had to deal with.

I think the toughest disappointments of all is when you have your mind focused on something and it doesn't happen. This happened to me near the end of my hospital stay. I was supposed to be getting discharged from the hospital the next day when they found the infection in my Hickman line and I had to stay an extra four days. This news was devastating mainly because I was so mentally prepared to leave I didn't prepare myself for a chance of disappointments.

Although going through this journey has had it fair share of disappointments, it has had a positive side as well; I have learnt to deal with them :) The first thing I should share is when things aren't going your way or you have a major disappointment you must keep positive and hoping for the best. The second thing to realize is things happen for a reason. If something that we were hoping to happen didn't, it means there is something else we are meant to do. This has been the approach I have taken to dealing with my cancer. Although it has changed my life drastically and destroyed "the plan" I had been building for 3 years, I truly believe that I will find a purpose and meaning for my new journey.

I was reflecting this morning on life's greatest disappointments. These are the ones that truly can be devastating to someone. What I realized is that these disappointments although terrible, can also be the source of something powerful; they can be the source of some of the most powerful inspirations we may know. These events are usually so devastating because we believed with all our hearts that everything would work out in our favour. When this doesn't happen, we should use this disappointment to our advantage and let it motivate us moving forward. When we can't do, we must influence.

So please if any of you suffer from a big disappointment in the future, take your time to grieve but then find the new purpose for your energy. Most of the time it means you are meant to influence others to act on your behalf. The beautiful thing is when you inspire and influence your impact is actually much greater than if you were to just act alone.

I hope you all enjoy your rainy Thursday.

GO TIGER :)

Aaron

The Light at the End of the Tunnel

Good Morning Everyone,

I wanted to start with saying sorry for the delay on this post. It has been a pretty tough past week. I have suffered with a constant headache since my lumbar puncture was completed last Wednesday. I still have the remnants of one today but nothing compared to the weekend.

The headache is the muse for my post today. Most people are very curious about cancer and more specifically the chemotherapy. The media bombards everyone with how terrible chemotherapy is but really there are really good drugs for the terrible side effects. The worst side effect is the nausea and there are at least 4 different types of drugs at the doctors disposal to help fight it. There is some side effects that there isn't really drugs for, mouth sores, hemorrhoids (thankfully I didn't get these ;) ), and of course head aches.

The head aches are specific to my form of cancer because of the intrathecal chemotherapy I receive. They are caused by the needle hole in your spine not healing right away and your spine leaking spinal fluid. The thing with the headache is it isn't as painful as a migraine, what makes it hard it is the duration. Anyone can deal with a headache for one day, but after the third straight day it starts to wear you down. And this my friends is what makes chemotherapy the hardest, having to deal with a side effect day after day with no end in sight.

When I was in the hospital one nurse told me that the patients that do the best in responding to chemo are the ones that the most curious. I never really put much thought to why until yesterday. It is because knowledge brings a light at the end of the tunnel for the side effects. First, going into the treatments knowleadge allows you to know what to expect and how to try to prevent the side effect. Second, it allows you to have an idea how long the side effect might last. This is the key to getting through the treatments because it provides the light at the end of the tunnel. You can deal with almost anything when you know how long you have to fight it. This is because it allows you to mentally to prepare yourself for the battle ahead and you can start the countdown. What makes the battle the hardest is not knowing how long you have to deal with something and therefore having no end in sight.

I think the lesson through all of this is no matter how daunting or difficult something might be look for the light at the end of the tunnel because with that you can deal with anything.

I hope everyone has a good day, I am off to PMH today for some blood work and catchup appointment. Maybe I can convince the doctor for some really strong pain killers and make that light at the end of my tunnel a little brighter :)

Until tomorrow,

Aaron

Good Night Morning - Life After the Hospital

Good Morning Everyone,

Sorry for the delay in this. It has been a crazy past two days. Tuesday I built some furniture that we ordered for the bedroom and it completely KO'd me after I was finished. Yesterday I intended to post but I was at the hospital for about 4 hours longer than I expected (my 10am appt turned into a 3pm appt). After my appointment the LP bothered me way more than the past procedures.

Well today I thought I would post about something that never even crosses your mind when you are in the hospital, learning to live at home again. You see during induction therapy you live in the hospital for so long (6 weeks for me) you end up getting into routines. For instance, I titled this post Good Night Morning because that was an in-hospital routine I had. Every morning after my blood was taken at 5:30am I would go down to the quiet room to sleep with Amy and "Good Night Morning" is what I would say to her each morning as we fell asleep. Now that we are on the outside we are learning to make new routines with living at home again.

Once you are out of the hospital there is quite a learning curve in adjusting to life on the outside. It affects every aspect of your life. For instance, you have to plan ahead around meal times. In the hospital your food just arrives but on the outside you actually have to allow for cooking time. This is something that everyone has to deal with, but when you spend so long in the hospital it is something you totally forget about. Another big thing is your energy levels. You don't realize in the hospital that your energy levels and strength is dwindling each day you are there until you get outside the hospital and start realizing you don't have the strength to do the things you did before. I have learnt now that I can only plan one big thing a day because I know I need the rest time before and after. This big thing can be anything from going grocery shopping to even putting together a bed frame (something I grossly underestimated Tuesday afternoon :) )

Yesterday I learnt yet another outside the hospital lesson, patience. When you are in the hospital you don't really realize how long things take to happen because you have a bed there and lets face it you really you have no where else to go. But yesterday I realized just how long things can take. You see when you arrive for chemotherapy appointments, the drugs aren't waiting for you. They have to get mixed and prepared which takes time. This can turn a 10am appointment into a 2pm appointment very quickly (something I learnt yesterday :( )

Another thing is procedures affect you much differently as an outpatient than as an inpatient. Chemotherapy can be a tiring ordeal because there are more things that you do at home. When you are in the hospital your only responsibility is to go to the bathroom, record your outputs, and take your meds. At home there is so much more that you do, all of which can tire you out more. When combined with the chemo this can really hit you.

In addition, I learnt yesterday that outpatient lumbar punctures affect you a lot more as an outpatient. When you are in the hospital after the procedure is done you can spend the rest of the day lying in bed if you like. As an outpatient you are given 5 minutes to lay down afterwards and then you are told to leave. I have never had a headache from the lumbar puncture until yesterday(if anyone doesn't understand why the headaches occur let me know and I can elaborate more). I had an LP on my discharge day and it barely affected me. Yesterday's LP left me with a super sore back and on and off headache.

All in all I would never trade in living at home and doing outpatient therapy over inpatient. But adjusting to life on the outside has been a much bigger learning experience than I had ever anticipated.

I hope everyone has a wonderful Easter weekend! Make sure you all eat lots of chocolate, I need each of you to make up for the chocolate that I can't eat :)

Aaron

The Power of a Great Network

Good Afternoon,

Sorry for the delay in post. I have entered the "black cloud" part of the chemo treatments where a couple days after the injection you feel pretty tired. So this morning I slept in,relaxed and decided that I would write this post this afternoon. I apologize to the morning readers, I will not make a habit of this ;) Also, I had a surprise visit from one of my good friends from high school that I hadn't seen in years. It was very nice to catch up and chat. Our discussions even inspired two reflections that I will post about in the coming days and weeks I am sure :)

Today I wanted to I wanted to send out a bunch of thank yous. First, I wanted to thank everyone who has signed up for the One Match donation bank. The outpouring of people signing up for this has been astronomical. I use the term astronomical because it is in line with the metaphor I used in my very first post, The Big Bang. (If you haven't read it, the calendar to the right has all my old posts :) ) But this is how I had hoped my journey through cancer would develop. My diagnosis would be the catalyst that started the "big bang" and everything would grow from there. (Hence, the symbol of the blog with my initials in the middle of the big bang expanding ;) )

Well on Friday, there was another example of the ever-expanding influence our network has. Maple Leaf held a One Match and blood donation Registration event. From all the feedback I hear, the event went amazing. From the event there were 84 people who signed up for the One Match Donor list and all the blood donation spots at the next Blood Clinic were filled. I wanted to extend a huge thank you to everyone that signed up and all the volunteers that made the event so successful.

I have not been tracking all the people who have signed up for One Match but I know we as a network are well over 100, easily. It is an amazing to think that we can have such a positive impact on so many people's lives. I hope that many of you get the opportunity to give. I have gone through a very similar procedure (where the marrow and stem cells are drawn out of my hips) and the worst part is when they draw out the bone marrow. Lucky for all of you, you get to sleep through it ;) I on the other hand get to feel it :(

The other thing I wanted to touch on was how the Blood Challenges were going. First, in the "Greatest Influencer" we have two people tied in the lead with each influencing two others to give blood. I think this contest has the possibility of really heating up so get your influencing in early to get a lead :)

Second, the original blood drive challenge is doing amazing. As of last Thursday we as a network have officially paid back all the blood that was transfused into me during my stay in the hospital. This is an amazing feat and one that I am extremely proud of.

With the two challenges combined there has been 14 blood donations this month. That means that we have given "life" to 42 different people. It is amazing to think that many people are going to get life saving transfusions thanks to all of your generosity. A huge thanks to everyone that has gone out to give blood!

For those that haven't given blood but still intend to, there is still plenty of time left. We haven't hit the 56 day cycle yet so the leaders are still only at 1 donation. Get in and book your appointment soon so that you are still on the first cycle of donations :) And for those that can't give blood due to past illness, travelling constraints, or any of the other long list of reasons that restrict donations. Remember what I talked about in the paying it forward post; when we can't do, we can influence. The greatest influencer challenge is a perfect place to start. Just get everyone you know to give blood in your place. When someone you know gives blood, post their name and date in the appropriate place and I will list you as the influencer.

Over the past week I have given some thought to these challenges and I realized that I have made it difficult for everyone to take part because of need for a Facebook account. Today I am amending the rules. Now you can leave a comment when you or someone you influences on the Blood Donation Page of this blog or continue to use the Facebook way. I will watch both places and continue to keep track.

Now let's get out there and give some more blood. For all those O+ donors, who knows it might be your blood that is given to me in my future transfusions :)

I hope you all have a great day !

Aaron