Kinda of a Recap up Until Now

Sorry I have been very sporatic with these posts lately.  To say It has been a very difficult couple weeks would be an understatement :)  And when I am feeling terrible I just don't have it in me to write about how terrible I am feeling :)  I thought today I would kind of fill in the blanks of what has been going on.  So todays will be a recap post up until where we are now. 

  At the beginning the chemo didn't really affect me adversely much at all. The big thing was they pump a lot of fluid through you to ensure you are peeing because the chemo can really damage your kidneys.  So in the first 24 hours I gained something like 8 pounds in water weight.  Here I was coming into this with the excitement of maybe losing some weight and I put on 8 pounds. I couldn't believe it :)  Other than the gaining water weight (which I lost over the next two days) I "got through" chemo fairly unscathed.  Now I put the got through in quotations because other than causing nausea chemo doesn't do anything until a week or two after the treatment.  Then it starts giving you lots of lovely presents :)

The next phase was to begin a twice a day regimin of full body radiation for next three days.  The radiation I hated most because it has the most horrible smell as the xrays mixed with the air molecules while they are irradiating your head.  Other than that though the procedure was completely painless.  After my first treatment while I was still lying on the bed I thought, hmm...this isn't so bad.  Then I tried to get up and nearly fell back down.  You feel like you just did a 3 hour total body workout.  The after effect of radiation is complete and utter exhaustion.  And it is additive because you are going twice a day.  On the morning of the third treatment I didn't even want to get out of bed.  :)  The other side effect is it gave me a nice red glow all over my body.  I think I look more like a tomato now that a person.

The sixth and final dose of radiation was monumental in two ways because I was finally done.   I can't tell how fast I got out of there.  I was even pushing the wheels of the wheelchair as the porter wheeled me back to my room. Right after the radiation I received my stem cell transplant.  I wrote a post on my thoughts and feeling towards it (It is called I have been Reborn check it out if you haven't already read it).  It was a very surreal feeling to be holding a complete strangers life force that they took time out of their busy lives to give so that I could survive.  When you actually receive the transplant there actually isn't as much to it as you may think.  The team her uses a lot of prophylatic medication to prevent any negative side effects.  The main meds are gravol and then benedryl.  While they are infusing the stem cells you get fairly cool because they have been kept chilled but other than that you don't feel anything. My transplant took a total of  20 minutes.  After that the pre drugs kick in and I passed out for the next 5 hours.  Amy had two really cool nurses that they were able to chat together while the transplant was all happening which I think helped calmed her nerves.  Me I was basically stoned with all the drugs so I just lay in the bed and listened to them talk about Hollywood.

From that point on it has been a waiting game for my counts to crash and my new cells to take over my bone marrow factories and start making me new blood cells.  The waiting game is when all the horrible things happen though. DISCLAIMER the next section will be a little more graffic if that isn't to your liking scroll down.

First the radiation reaks havoc everywhere but the worst is really does a number on lining of your stomach.  So everything upsets it you get really bad diarehea.  On top of this you are still absolutely exhausted from the treatments themselves.  Unfortunaly this time period fell over christmas eve and christmas day. Decemenber 23 I basically laid in the fetal position or sat on the toilet.  Let me just tell you, that beday is an abosulte godsend.  The morning of christmas eve I was feeling better but not great.  Thankfully I did feel much better in the afternoon and Amy and I were able to celebrate christmas with her family.  Christmas day also I had enough energy for us to celelbrate with my family.  Now you might not think that a hospital room would be all to festive but I have a magnificent view of the city and Amy made sure we had a christams tree in our room.  My mom also brought us some christas hats to top off the festivities.  

What makes the diareahea so bad isn't what you would think it is. Because the radiation beat up my stomach lining I had to cut out a lot of things from my diet.  By a lot of things I mean anyhing with flavour.  My diet was basically water for a couple days there.  Earlier this past week I decided to try popsicles and Mr Noodles and both work pretty good.  A major side effect is diminished appetitite. For those that knew me before it can be quite alarming to see what I eat now. But my stomach seems to be slowly mending and I can tolerate some foods. It won't fully heal until my counts come back.

This was the week that my blood counts crashed as well.  I have been a sitting duck (as I called it in induction for five days now). This is where I have no neutriphil counts which are the blood cells used to fight infection.  I spiked a fever a couple days ago, which all but guarentteed when you go through this process.  They act very quickly with taking many different types of cultures and running a bunch of tests.  While the wait for the results the immediately start me two different broad spectrum antibiotics.  I actually looked at it as a good thing it happened so early because now while I am going through this dangerous time I have all these extra drugs to help keep me safe.  THey won't take me off the antibiotics now until my stem cells engraft.  The fever isn't bad other than you are really hot and high alert for everything. Any change whatsoever you have to report so you don't sleep all that well.  Thankfully my fever has been breaking the past couple days.  It does creep back up but aslways come back down again so it has been nice not to sweat as much. 

In addition to my neuts crashing my platelets have as well.  The normal count range is 150-400 I believe. 

Well on wednesday my count was 3.  So I received my first platelet transfusion.  Yesterday the count was 10 which is the cut off point for transfusions so today I am expecting to probably need more platelets today.  My red counts are dropping to so soon I will need those as well.  For all of you who have donated blood I thank you from the bottom of my heart.  It is donations like yours that is the only thing keeping me alive while I wait for my engraftment.  Please continue to donate and get anyone you know to donate as well, it is one of the few ways were you aare guarenteed that your hour spent will save at least 2 lives.

The past day and a half I have been dealing with horrible pain in my legs.  They say that as the cells engraft your long bones can be extremely painful but everyone tells me I am way to early to be engrafting yet.  Who knows why it is happening but it sure hurts.  Thankfully with cancer patients they are extrememly liberal with their drugs so I have pretty spent the last 24 hours on morphine.  It isn't crazy high doses like the ones that cause hallucinations but it does take the edge off quite nicely.   I actually had a joke with amy.  I told her for New years eve she should sneak a little wine into the hospital and I would have some morphine and we could have a great celelbration :)

Well that is pretty much everything up until now.  My hair began to fall out yesterday so I look like I have terrible balding.  It should probably be gone today today or tomorrow.  I haven't gotten the mouth sores as of yet but I assuming that is my treat for this weekend.  Also with a transplant some patients throats get so sore that they can't swallow anything.  I haven't gotten this yet.  My throat is sore but feels more like the sore throat you get when you have a cold.  I figure if I am going to get the bad throat it will be this weekend too.

Sorry this was so long but I thought this was easier than sending out a million emails.  For those that I owe an email to, I will still get back to you just not sure when.  I hope you all have a wonderful New Years Eve and bring in the new year with a bang!!

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I Have Been Reborn (Day 1)

Sorry for the sporatic posting over the past few days.  I have realized that over the past few days that going forward there are probably going to be a few days that I will miss posts just because I am too tired to write.

Well the pre-conditioning program is complete.  At 4pm yesterday I finished my 6th and final total body radiation appointment.  I have gotten a pretty good red glow from it (I guess it suits the christmas season :) ) 

While you lay in the radiation room you get lots of time for reflection and thought since you are all alone.  (All the techs run out and seal you in the lead room before it begins).  While going through the radiation it dawned on me that I was killing myself.  It was an odd realization.  I had agreed to a conditioning program that without the miraculous generosity of my donor I would not survive from.  It really put a lot into perspective.  I am personally really happy to be done all the conditioning program, I really did not enjoy the radiation.  As the xrays react with the air they make a disgusting smell that I did not enjoy one bit.

Last night at 5pm I was infused with my new stem cells.  These new suckers will move throughout my body over the next few weeks looking for bone marrow to set up shop in and start producing all my new blood cells.  The interesting thing is as they start producing my new immune system, it will seek out my old one and kill any remaining cells which will include any leukemic cells that survived the radiation and chemotherapy.  I am now just playing the waiting game of waiting for my old counts to crash and waiting for the new cells to start doing there job.  I have posted a picture of me holding my new cells.  It was a very surreal experience holding a bag that had so much power and would save me life. 

Well that is all for now. I hope you all have a good christmas.  We sure intend with such a wonderful christmas gift given to us.  I only hope to one day repay even a fraction of the generosity this person has given to me.

Aaron

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Day (-2) -- Total Body Irradiation Day 1

Hey Everyone,
Well I have finished my first day of radiation.  Amy is a little jealous because while I am downstairs getting colour in the world's strongest tanning machine she is getting pale :)  Todays message is gonna be pretty short just wanted to let everyone know I made it through the first two rounds of radiation.  It takes a lot of out you.  I am not tired like I need to sleep.  My body is tired like I just finished working out for 3 or 4 hours.  Everything is just exhausted.  I am sure the two big bags of chemo are helping with this a little too. 

As I left my second dose of radiation I had visions of myself looking like homer simpson glowing green :)  I can imagine how green I will be by Friday....Just put on some red and I will be perfectly decorated for Christmas :)

On a side note just thought I share a fun little fact from yesterday.  I was actualy not a person but a fountain yesterday.  I expelled over 8L of liquid.  I think I spent more time in the bathroom than in the room :)  Thankfully I am not longer hooked up to the pumps anymore and I control my intake. 

Alright I am off to rest and prepare for day 2 of radiation.




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Day (-3) - FInal Chemo

Hey Everyone,
As you can see by the title I received my final dose of chemo today.  My nurse Jill was nice enough to pose with the empty bag (although she hid her face at the last second).  Hopefully if everything goes as planned this will be my last chemo ever.  I will be keeping my fingers crossed and saying prayers it is.  Again I tolerated the chemo pretty well today without too much nausea.  The only side effect is I have to pee a lot because they are pumping me with fluids (from 7am to 2pm I intook 4L of fluid).  This is kind of good because I made a rule halfway through my last hospital stay that every bathroom break I wash my mouth so hopefully all these pee breaks will reduce the severity of the mouth sores....stay tuned as they should be cropping up in a few days.
Today my mom, Amber and Al came for a visit to keep me company while Amy went to do some things.  We had a nice visit and they gave us a picture frame with lots of pictures in it.  Thanks to everyone that took time to send in personal messages with the pictures.  They were really heartwarming and it was altogether a nice surprise.
They left at around 4 as I was beginning to feel tired and was going to take a nap.  Well the hospital had other plans for me and hooked me up to a diuretic.  So now I have been having to go to the bathroom every 10 minutes.  So much for that nap...everytime I close my eyes all I can think about is going to the bathroom. :)  It is kind of a good thing because since they have hooked me up I have probably taken in about 4 more litres than I have gotten rid of.  It is ruining my favorite part of the day.  They say when you go through these traumatic times to take things a day at a time and celebrate the little things.  One of my favorite things is the weight loss...I tell you chemotherapy and cancer treatment can be an excellent weight loss regime :)  I look forward to the scale each day.  Although the past two days it just keeps going up....not my idea of fun....I will let you know after a week what I have lost. I had a new years resolution this year so this transplant came at a good time of the year and just might get me there....:)
Tomorrow I start my first two rounds of total body radiation.  Not to sure what to expect but I have been told it isn't a big deal.  The chemo has the worse side effects.  I will update you all tomorrow on how it goes.  Well my dinner got here and I have to go to the bathroom again so I am signing off..Hope you all had a great weekend!  Oh yeah don't forget to keep clicking the ads ;)
Aaron
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Day -4 - Catch up and some Chemo

Sorry for the media blackout the past two weeks.  It has been very hectic to say the least getting ready for the hospital. Thank you to everyone that sent me well wishes.  I will respond back just need some time :)

The past week has been hectic packing and getting ready for the hospital.  There is a lot of things to do when you are moving out for a month at the least.  What made it more difficult is that we had to have everything done by Wednesday night.  I was not actually admitted to the hospital until Friday but Thursday I spent most of the day here getting my central (hickman) line inserted into my chest and getting one final LP done. (more on that in a minute).

We successfully got the bulk of stuff done on our deadline of before going to bed on Wednesday. It was so busy that we were actually looking forward to getting to the hospital just to relax.

Thursday as I said I had two procedures done. First I had the hickman line inserted.  This is done by first making an cut in my neck.  They insert a tube into my neck and into the venea cava.  This tube is continued to be inserted until just outside the right ventricle of my heart.  They then make another cut in my chest and tunnel a tube under the skin of my chest to the first insertion site.  They then hook the two tubes up and stitch up the hole in my neck. The procedure was actually fairly painless and it only took a day to bounce back and get full range of motion.  It is still a little tender but way better than the last two times :)  As for the LP it was the final test that had to be done until I could be admitted.  They had to verify that there were no leukemia cells in my central nervous system.  There was no chemo injected but still the needle into the spine.  The biggest problem with my protocol is the steroids deposit fat on your spine which makes it harder for the doctors to find the gap to go in, so they literally make educated guesses.  It took three different insertions before she got through the membrane to get the fluid.  It was extremely unpleasant but I was happy it was over.

Friday we got the call that my CNS was clear and I was to be admitted.  It was a surreal feeling coming back to the hospital.  Because it was so planned out there wasn't the shock value that occurred the first time around but it was still difficult.  There are a lot of different thoughts that go through your head.  As you look around you wonder if that is the last time you might see the place (I don't expect that to happen or will I let it happen but there are risks :) )  Mainly there was excitement to get this over with and sadness.  I had gotten quite comfortable in my routine and now I was having to break it again.   The hardest part by far was leaving Dora again.  It was what I had a hardest time with last time and this time it was no different.  This time which made it harder is I have spent all day everyday with her the past year pretty much so it is a bit of a shock to the system not watching her run around or having her try to bite me.  She was thinking of me though because when we unpacked at the hospital we found a toy that she had put in the one my bags for me.  That brought out a lot of emotion but I am determined to get back to hanging out with her.

You will notice at the top that I have labelled it as Day -4.  That is what day I am on in my protocol.  Day 0 is the day that the stem cells get infused into me so all the days before are negative days.  As I write this I am actually receiving my first dose of chemotherapy.  It is a massive bag (1L) that is infused over two hours.  It doesn't look dangerous as it is clear but you know it is when the nurses are all covered up in their blue gowns.  It is an old joke but I make it with each nurse.  I always tell them it is kind of funny that they get completely covered up to handle the bag and yet they are injecting it directly into my heart.  I have only one more chemo treatment after this which will occur again tomorrow and then my radiation cycles begin.  I haven't had any terrible nausea from it yet (they give us pretty potent nausea meds :) ) but I feel a little stomach tickle here and there. Soon my counts will plummet, my hair will fall out and the mouth sores will begin.  The major side effect from the chemo and radiation is damage to the whole GI tract from your mouth to your butt.  This can cause a lot of diarhea which can be quite unpleasant.  Since our bottom end is the most dirty part of our body they have a special tool to combat it, a Beday (don't know if that is spelt right).  Well when I first saw it I wasn't too sure about it but we are expected to use it a minimum of 3 times a day so I thought I would give it a go last night.  It was surprising pleasant. Who would have thought a stream of water up the butt would be.  But it left you with a feeling of clean you rarely experience.  When I get a house this is definitely go in the bathroom ;)

Sorry for the long message but a lot has gone on since we last spoke.  As for visitors I know that many of you want to visit but right now I am keeping it very strict to family only.  I really need to control the visitors because I am so susceptible to illness and I want to get out of here.  We will have of plenty of time to hang out once I am out of here ;)  Once my counts start to come back I will revisit my visitor policy but for now I need to stay strict and diligent.

I hope you are all having a great weekend.


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Week in Review 12.11.10

This past week turned out to be much busier than it was originally planned.  I was originally only scheduled to go to the hospital for two of the days of the week but ended up being there everyday except Monday.  This post is much longer than most because of how busy the week was :) 

Monday was more of just a prep day.  Because I had the bone marrow procedure coming the next day it pretty much made Monday a write off because my mind was so preoccupied with Tuesday's procedure.

Tuesday was actually a really busy day with a couple tiny unpleasantries and one big one :)  The word of the day was "awesome" because when I was describing everything to Amy the night before I would sacrastically end each description of the unpleasant things by sarcastically saying it was awesome. She of course the next day would say throw my use of awesome back at me.  She and my mom were trying to make me smile because they could tell that the bone marrow procedure was really weighing on my mind.

Awesome #1 - First thing in the morning I had a CT scan of all my organs and pelvis.  The exam itself isn't that unpleasant but the prep sure is.  First you are not allowed to eat or drink after midnight leading into the exam.  This isn't terrible except once you are unable to do something like eat or drink, you of course become so thirsty and hungry.  Once at the hospital I was given a litre of this disgusting white drink to down.  This drink illuminates your colon so they can distinguish that from your stomach.  The drink is terrible! It was like drinking cold liquid chalk.  The other terrible part of this drink was it acted like a cleanse and was cleaning me out for two days if you know what i mean ;)

Awesome #2 - The second appt didn't turn out to be bad, but that was because I got good news at it.  I met with the dentist second.  They like to check your teeth and get any potential procedures done before the transplant because since your mouth is so dirty, if something goes wrong in your mouth without having your immune system it can be very bad.  It turns out I had no cavities or anything wrong! I guess brushing your teeth twice a day and an apple a day does help :)  They wanted me to have a dental cleaning done before the transplant to lower the amount of mouth bacteria so this is why I had to come back to the hospital on Wednesday.

Awesome #3 - I had to do some blood tests next.  But these were no ordinary blood tests.  For most people a blood test consists of 3 or 4 tubes of blood, this was even the case for me most of the year.  But when they are doing baseline blood tests for blood cancer patients it is quite different.  They took 17 tubes of blood!  This didn't actually bother me too much because I am so used to blood needles now but it did provide me with some material for joking with the blood tech and nurses throughout the day.

Procedure #4 - This I didn't call awesome because it was really simple, it was an ECG.  It is really simple, they attach electrodes to your chest and it records your heart.

Awesome #5 - This was the big whopper of appointments, the bone marrow extraction.  Of course they make you wait for this so that it continues to build up the anticipation for it.  At the top of this post I put a picture to try and give you all an idea of what happens.  Needless to say it is quite painful and extremely uncomfortable.  I won't go into too much detail on it but lets just say you don't ever want to have one.  ;)  The procedure involves three extractions.  The first two extractions are where they suck out the bone marrow fluid into two vials.  This is called the bone marrow aspiration and is by far the most painful part.  The third part they push a different needle deep into your bone and rip out of piece of the marrow.  My mom said that the piece ended up being an inch long.  I didn't look because last night I did look and it haunted my dreams :)  This is the biopsy part of the procedure and doesn't hurt as much as the aspiration but you feel an incredible amount of pressure inside your bone while they are doing it that does hurt.  I had to have to doctor stop pushing twice just so I could recompose and handle the pain.  That was the end of Tuesdays procedures.

Wednesday - This was a simple day.  I just went into the hospital for an hour dental cleaning.  I am not a huge fan of these though because they always leave your gums sore afterwards. But compared to some of the other procedures I get, I would take sore gums any day ;)

 Thursday - I went back to the hospital to meet my radiation doctor, sign my consent to recieve radiation, and get my measurements done for radiation.  It is a pretty relaxed day.  The only touch part was when they are measuring you for radiation you have to keep perfectly still with your arms at your side but the bed was not wide enough for me and half of my arms were hanging over the edge so I had to keep my muscles tight to keep still.  I still have the marker markings on my body from this procedure.

Friday - Friday was heart and lung day for me.  The day started with a pulmonary function test to see how strong my lungs were.  This was a baseline test so they can see can compare in the future if my lungs are affected by the transplant.  The heart test I get is a muga scan.  They inject a radioactive isotope into your blood stream and then measure what percentage of the blood your heart pumps out in each beat.  It is a pretty easy test as you just lie down in a dark room for 30-40 mins. I often fall asleep :)  This test is important because if your heart is below 50% they will reconsider which chemo to give or have to give a lower dose as some of the chemo damages the heart.  My heart was 57% so I am good to go for the chemo.  It did ring true how the chemo damages the heart though because 1 year ago before I started all this my heart was at 65%.  I guess those chemo drugs really are bad for you ;)  I intend to work my heart really hard after the transplant and try to build back up its strength :)

Well that was my week.  I got most of my baseline tests done and only have one left. Next week I go to the hospital on Thursday to get my hickman line re-inserted and also have an LP done.  Then on Friday I get admited into the hospital and start the heavy chemo saturday.  We are off to Niagara tonight to go to the casino to have some fun before the coming transplant.  Maybe even we will win some money :)  Hope you all have a good weekend.




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What a Relief

Sorry for the slight delay in posting.  This week has tured into one crazy week.  It has gone from only having to go to the hospital two days, to having to go to the hospital everyday from tuesday to friday. 

Tuesday is finally over.  I knew that the anticipation of the bone marrow biopsy and aspiration were have a huge affect on me but you never really realize the full grasp it has on you until it is over.  After the procedure, as I laid on the stretcher letting the hole in my lower back clot up, I could just feel the waves of tension and stress releasing from my body.  Going into this process I knew that that procedure personally was the biggest mental hurdle to get over.  Why is it so tough you might ask?  It is really quite simple.  It hurts a lot to have it done.  Of all the things I have gone through in this process it is head and shoulders above the rest.

The other interesting realization I had is just how bad stress really is on you.  You would think that going through cancer treatment would be really stressful but truthfully I haven't felt to much stress at all (except the first week of diagnosis and this past week).  If you notice a trend it is around the bone marrow procedures :) It is funny because when you are living your day to day life you really don't realize how much stress you are truly under.  It isn't until that lifestyle is taken away to you really realize.  The most ironic part is all the stresses are usually being fabricated from things that really aren't of the utmost importance.  The week before I was diagnosed while we were still living our regular lives Amy and I both felt incredibly high levels of stress.  The funny part is a week later after being in the hospital for a couple days we couldn't even remember what was stressing us out so much. 

Going through this process I think I have found two lessons when it comes to stress.  First, make sure you are enjoying your time at home.  By enjoying your time, you will relax much more and take your mind off of the things that cause stress.  I have found the best way is through taking up hobbies.  Who would have thought that going through the fight for my life would have been the least stressful time in years ;)
Second, when you are feeling stressed take time to reflect on what is causing you this.  Often times you can't remove the stress yourself (like waiting for a big presentation, or bone marrow procedure) as it will be removed once the stressor is done.  But while waiting for this to occur it is very important to identify what is causing you to be stressed so it doesn't take you over with anxiety.  Once you have identified what is causing you to be stressed the second part is to find ways to reduce it.  Physical exercise is a wonderful way to reduce stress, even as simple as going for a walk in fresh air.  You can even use even simpler methods such as listening to relaxing music or even just focused breathing with your eyes closed.  It has been proven that by just focusing on taking long deep breaths you can actually reduce your pulse rate, blood pressure, and increase the oxygen level in your blood!  This is extremely important because stress actually increases you pulse and blood pressure and lowers your oxygen levels which is extremely harmful for your body in prolonged exporsures.

So next time you are feeling stressed, take time to reflect on what is actually stressing you.  Often once you have done this you will realize that there is really nothing to stress about.  If the stress stays with you, make sure you find ways to control and minimize the stress levels on your body until the stressor is removed.

Well that is what I have learnt so far.  If anyone has any tips they want to share, I would love to hear them! (please is you post with the anonymous function, sign your name at the end so I know who is sharing :) ) Well off to the hospital for Day 3 :D

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Week in Review 12.03.10

Well as most of you already new I received news that my bone marrow transplant is going to take place in December.  I get admitted to the hospital on December 16th which is not too far from now so I have a lot to do to prep for it.  Since it is our second time in the hospital we have a little better idea of what we need.  So  between stocking up for the hospital, all my prepatory appointments, finishing my christmas shopping, and eating all the things that are going to be forbidden :) it will be a busy couple weeks.

Commenting - i really appreciate all the comments and love to hear from all of you but most people seem to using the anonymous posting.  If you use this posting type and feel up to please sign your name at the end of the comment, I love knowing who I am hearing from :)  If you want to remain anonymous but still comment, no biggie, I still love hearing from you. :)

Small Request  - most have you have will have noticed a small amount of ads on the blog.  If you like a blog post or just feel up to please feel free to click on an ad.  You can close the page once clicked.  It is only a couple cents but always nice :)  Plus it will be a good way for me to know which posts you like the most ;)

Holiday Season is the time to give - The holidays are truly a time for giving.  I have a present idea for each of you that will cost nothing :)  If you are able please go out and give blood.  A bunch of you have already started with the blood donation challenge but if you aren't please consider giving this holiday season.  The holiday season is always a time when the blood banks require more blood and there are less donations.  It will only take a small bit of time out of your day and you can change the lives of 3 people.  What better way to go into the holiday season that saving three lives.  I bring this up because between Christmas and New Years this year I will be requiring blood products each day to keep me alive.  If you do donate please leave a comment letting us know your name and donation date.  It is always so great to hear about the donations!

I am at a good mental place now going into the transplant.  I am still not super excited about the bone marrow biopsy but I am trying not to think about it too much because that just makes it worse.  It is a necessary evil so I will just grin and bear it ;)  I have my game plan for trying to deal with the chemotherapy this time around. I am not too sure what to expect with the radiation but I hope to find a really experienced nurse once I get there and get all the great prevention tips :)

Well I hope you all have a great weekend.


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A Walk Along the Lake

Last week I went for a walk one afternoon along the Lake.  The sunlight wasn't the greatest because it was overcast most the afternoon but it popped its head out once in awhile.  Here are some of my favorite shots from the afternoon.

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All I Want for Christmas...

I got some surprising news on Tuesday.  Around noon the transplant team called me and told me that my doonor has chosen December for when they want to do their donation.  This means that I will be admitted back into PMH on Dec 16.  I will begin my heavy duty chemotherapy on the 17th.  After four days of heavy chemotherapy I will go for a couple of full body radiation sessions on the 21st.  And then on the 22nd I will receive my new bone marrow stem cells. 

I titled this post all I want for christmas because I have kind of had that song all i want for Christmas is my two front teeth in my head :)  I wonder if I could write one for bone marrow (if there are any song writers out there feel free to take a shot ;) ) 

When I first got the phone call I have to admit I was a little in shock and had a lot of nerves.  It took a lot to process everything.  Most people would think that the emotion you would feel is excitement and happiness but at first those are not the predominant emotions.  Sure there is a small bit of happiness.  I also feel gratitude towards this stranger that is giving me such a big christmas gift.  I think the gratitude will be at it highest when I am receiving the stem cells and the happiness will really start to take hold as my counts start to climb again.  Right now though the major emotions are shock, apprehension, and nervousness.  The shock comes from it finally coming true.  You go through such a long waiting time that it almost doesn't seem real that you are going to go through the bone marrow (more like a distant dream ;) ).  The apprehension is not a overwhelming feeling (don't worry I am not thinking of backing our anything like that).  It is more a combined feeling with the nervousness.  They are more derived in the fact that I have one of the biggest fights of my life coming up. And that I guess is the root of why you don't feel super excited and happy.  Sure as the process goes along the excitement will increase but right now I am mentally preparing myself for what lies ahead which is a very difficult road.

On the day I found out I was being transferred to PMH to begin my treatment I had a similar experience.  It actually is a feeling I haven't felt since the last time I raced at Nationals.  The nerves are a bad thing, just part of getting mentally prepared for a tough battle (whether a big race or big chemotherapy treatment :) )

Those are most of the details for now.  Over the next 2 weeks I have a lot of testing and procedures that have to performed on me.  Next Tuesday I get about 15 vials of blood taken and my bone marrow aspirated and biopsed.  This bone marrow procedure is actually what is taken up more of my apprehension feeling because it is so unpleasant.  I will be very happy once I am through that.  I also have to have a hickman line re-inserted, two heart tests performed, a ct scan of my organs, and a pulmonary function test done.  With all these testing there may be some days I am not able to post an update over the next 2 weeks.

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Blood Donations

Over the past year your response to my blood donation challenge has been amazing.  So far we have had 60 donations (that I know of).  Please if you have donated and not posted your update please do so (you can't win the challenge if I don't know about your donations ;) )  Remember you can post in one of two places; either on the facebook page or if you aren't a member of facebook posting a comment on the blood donation page of this blog.  Right now we have one person leading the challenge but I have a feeling that others have donated and not posted their donation.

For those that are new to the blog after I went through my first stay in the hospital I realized just how important blood donations were.  I was receiving someone else's blood that was literally keeping me alive.  It made me feel terrible because I had never given blood and now with my disease I was not able to donate in the future.  So I asked everyone I knew to donate.  My original goal was to replenish the blood banks of the blood I used.  To make it a little more fun I have made a competition out of the blood donations.

A found a couple quick facts on blood donation that I thought I would share:

• On average, every minute of every day, someone needs blood or blood products in Canada.
• The need for blood is greater over long weekends and during the winter and summer holiday and vacation seasons because regular donors may be away or too busy with other activities to maintain their regular donation schedule. Meanwhile, the demand for blood and blood components is constant.
• One donation-which takes about an hour of your time-can improve or even save up to three lives.

That means with your blood donations this year you have changed 180 people's lives.  That is so amazing and you all should be so proud. 

I also found this need little link that helps you calculate when you can do your next blood donation.
http://www.blood.ca/centreapps/internet/uw_v502_mainengine.nsf/E_DonCalc



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The Mental Battles

The past year I have undergone numerous mental battles.  Each battle has been different and had its challenges but also provided its share of lessons.  I thought today I would reflect on a few of the mental battles I have experiences.

The most overwhelming mental battle I underwent occured around Easter of this year.  At this time I underwent one of my many intrathecal chemotherapy treatments (this treatment involves a needle being inserted into my spinal cord and a chemotherapy agent injected directly into it).  One of the side effects is a potential to develop headaches.  Thankfully I only have had this side effect once (knock on wood :) )  But this side effect occured over easter weekend.  This is not any headache but the most debilitating experience of my life.  The mental battle actually came from just dealilng with the overwhelming pain day after day without any end in sight.  Unfortunately there isn't much you can do in these circumstances to make your situation better.  Half way through the headaches I received so super strong pain killers from my doctor and it changed my world.  The most difficult part of the whole time was being in excrutiating pain and having no end in site.  Every day that I woke up in pain just got more and more overwhelming.  I hope I never have to go through something like this again but if I do I will be much quicker to getting pain killers :)

The most difficult mental battle I underwent was actually going to the doctor's office to get my plantar's wart burnt.  It is funny because it seems like it would be nothing but it actually took me over 2 months to build up the courage and mental fortitude to get through the doctor's door.  I never realized that I would have those fears.  I still don't know what was the full root of it but the last time I had been in that office I received the news to go straight to the hospital and then I found out about the leukemia.  So I am guessing it had something to do with that ;)  Finally one morning I just woke up and walked straight out the door before I had time to talk myself out of it.  Once I went once it was like a weight was lifted and now I have no problems with it.  The biggest lesson I learnt here was perseverance.  I knew after the first morning of me talking myself out of going to the doctors office that it was going to be a tough thing to overcome.  I never rushed myself or made myself feel bad for talking myself out of it.  I knew one day I would get there and that was good for me. 

Well those are my two toughest mental battles I have gone through this year.  Of course there are lots more that I have been through, and many more to come I am sure.  You don't have to go through cancer to undergo mental battles.  Just know that each one will make you a stronger person for going through it.



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Week In Review - 11.26.10

Hey Everyone,
Only a few updates from the past week.

Getting Ready - This week in my cycle I don't usually get up to anything.  It is more a week to recharge my batteries.  Next week I start the new cycle so I get with the heavier chemo and steroids. 

Tried out some new techniques - this past week I was out photographing and trying out some new techniques.  To do them properly I need to have a tripod because I have to keep the shutter open for so long and doing it hand held makes the photos a little fuzzy.  But I wanted to see if I liked the outcome before getting the tripod.  It turns out I do like the outcome (check them out at Aaron Offord Photography).  I also want to get in night photography.  I plan to get a cheap tripod soon and continue to do some experimenting with zooming and panning.  Also the tripod will allow me to start experimenting with night photography. 

Greatest Invention Ever - This week I went and got a Bosch Tassimo.  I have always wanted a single serve coffee maker since working at the Oakville office.  There we had a Keurig and I absolutely loved it.  I loved the ability to make a fresh cup of coffee without having to make a big pot.  In addition, it was very easy to try many different types of flavours.  So for the last little while I have been researching into getting one.  After researching the Keurig I found a lot of negative reviews of it breaking after a couple months.  Then I came across the Tassimo.  Not only did it not have the same durability issues but it makes many different flavours.  This machine is awesome.  It makes lattes, cappuccinos, hot chocolate, coffee, and tea. 

Continue to make progress - I am still making progress on the treatment of my foot.  One is almost gone and the other is getting smaller.  I still treat it each week and hope it will be all healed before I go into the hospital.  I have now decided to treat it but not to the point where I can't walk at all during the week. That just makes life miserable. 

No New News - There is no new news on the transplant front.  When we met with them we were told it could take a number of weeks so I am not fretting.  It looks  like I could be in the hospital for the super bowl again this year.  It would be kinda cool if I was back in the hospital for the same time period as I was the first time, it would add a little symmetry to the disease :)  Truthfully I would rather it in the new year just because I don't think I am fully mentally prepared for it yet.  I completely prepared for the gruelling treatment but I am not ready to have the bone marrow tested again.  I dread that testing day (the biopsy is super unpleasant).

Don't Judge - I am pretty excited for tomorrow.  I am off to see the new Harry Potter movie.  I read the books years ago and they continue to be one of my favorite series.  For those that haven't read it, don't judge they are actually wonderful stories.  Before I read them I had the same misconceptions but agreed to read the first book on a trial basis.  It was one of the few books where reading at night was a bad idea because I didn't end up getting any sleep.:)


Well hope everyone had a great week and has a great weekend.

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Cole Trickle...The Best Photography Teacher

Starting out in photography can be an overwhelming venture.  There is so much to learn when starting out and if you go to the internet people can be very snotty towards you if you aren't shooting manually.  Choosing all your exposure modes can not only be confusing but it can take a long time and you will often miss your intended photograph. 

I like to look at learning photography along the same progression Cole Trickle takes in the movie Days of Thunder.  When he first shows up at the track he didn't know anything about the car but knew how to drive really fast.  It was only as he continued to drive did he start to learn more about the car.  We can look at learning photography in the same manner.  When first starting out only focus on making great looking photographs (colour and composition).  Only once you start making great photos should you start to play around with the exposure settings of your camera.  I can guarentee that when most people see your great photographs that they won't ask what your settings were ;)

For me I do use some of the manual settings of the camera but only when they have a specific purpose for the photo I want to shoot.  For the most part I shoot on the P mode (auto exposure) so I can spend more time taking photos and less changing my camera settings.


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A Hobby That Gives Back

Over the past few months I have written about the importance of getting hobbies when going through difficult times.  Today I wanted to do a quick reflection on what my newest hobby, photography, has given to me. 

The most obvious thing is it has provided me with something that takes up time in my day.  You would be surprised at how much time you have when you have nothing to do.  Photography fills up many hours in my day because it fills time when I am actually out shooting with my camera and when I am at home reading about photography techniques.  A second benefit is by learning something new I am providing my brain a workout (more to come on this in a later post ;) )

One of the most surprising things it has given me was the application of a composition technique in my everyday life to control my brain to maintain pain levels.  Applying and playing with this technique has become very fun in my life.  I often find myself becoming aware of what my mind has made the subject and the background and how it changes.  I find it makes you so much more aware of your surroundings.  They do say you can't control you mind until you are aware of it.  So if we don't' practice becoming aware of what our mind is focusing on, we won't be able to refocus it when we need to.  Has anyone else tried focusing on your mind's subject/background??

The best thing photography has given me is a new way to look at the world.  My world has become so much more vivid.  Now when I walk around, even when I don't have my camera, I look at everything as potential pictures.  My favorite pictures involve lots of vibrant colours and colour contrast so I pay much more attention to the colours in our world now.  It has made my world so colourful.  :)

The next thing I am going to try and work on is really work on changing my point of view.  I already have my assignment planned out to work on it.  I am going to spend one afternoon taking pictures from the point of view of a squirrel.  So if you happen to be in Port Credit and see a big man crawling around the park ground, don't worry I am not crazy...just changing the way I look at the world ;)

Have any of you taken up a hobby in the past year that has given back many gifts to you?


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Is Living Everyday Like its Your Last Even Feasible?

I recently wrote a couple posts with regards to living life to the fullest.  Often times we spend our lives coasting, until something catastrophic happens and wakes us up.  Unfortunately, this catastrophic event can often be so grave we do not get a second chance.  I have been blessed that I have faired well so far in my battle with leukemia.  This has given me the time to reflect and wake up.  I realized that before I was got sick I was coasting, and have now begun to make plans to live a better life.

Often we hear live your life to the fullest or "Live everyday like it is your last".  But is this really an achievable goal?  If we were focused on living everyday like it was our last, we would most certainly fail, or become extremely frustrated and quit our crusade.  It just isn't feasible to live like that because we have so many daily demands to attend too. 

I think a more realistic goal is focus more in weekly buckets.  At the end of each week you should be able to look back and be happy with what you have accomplished. 

Of course you should have a list of things you want to accomplish in your life.  This can come in many forms, but the easiest is the Bucket List I wrote about recently. 

If you can look back on each week and be happy with what you have accomplished, you will live a happy life.

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Using Your Mind to Overcome Pain

I originally took up photography because I felt my new perspective would enable me to take interesting pictures.  I knew all along that my leukemia would help with my photography but I never expected my photography to help my battle with leukemia.

When we experience discomfort, it is often with debilitating consequences.  Over the past year, my treatment has provided me with ample uncomfortable moments to try out different coping techniques.  The technique I use most often is taking a deep breath as a procedure is being performed.  This deep breath often reduces the pain. 

But what happens when you are experiencing a constant pain?  I used to try and just focus on my breathing and forget the pain.  Unfortunately, it is very hard to keep your focus when you are in pain, and your mind easily drifts back to the pain. 

It wasn’t until recently that I discovered that a large component of pain is in our mind.  Ironically it was studying photography techniques that led me to this realization.  One technique in photography is the relationship between positive and negative space.  This is the same relationship that psychologists define as subject (figure) and background (ground). 

It is impossible to have a subject without a background.  The purpose of a background is to define the subject by giving it context.  Our mind is constantly selecting subjects and backgrounds.  For example, you are having a conversation with someone at a party with a radio playing in the background.  At the moment your conversation is the subject, and the radio is the background.  But if your favorite song was to come on the radio, the radio would become the subject, and the conversation the background.  Your mind cannot view the subject and background simultaneously, only sequentially. 

You may be saying to yourself, this doesn’t explain how to deal with pain?   Recently I was at the doctor undergoing a painful procedure.  While lying on the table afterwards, trying to cope with the pain I decided to see if I could apply the photography techniques of how our minds works, to control the pain.

I realized that in that moment the pain had become my subject, and everything else the background.  I thought that if I could make something else the subject, and therefore the focus of my mind, the pain would become the background and not hurt as much.  I started tapping on the top of my head with both hands fairly hard.  To my pleasant surprise, my mind instantly focused more on the tapping than the pain. 

Have you ever been told to pinch your finger if you get a cramp while running?  If you have ever done this you have applied this principle without even knowing it J

This technique can be applied to more than just pain.  It can be applied to anytime your mind has focused onto something unpleasant or discomforting. Next time you experience these feelings, try to shift the focus of your mind to a different subject.  If all else fails just start hitting the top of your head.  You may look funny but it works :)

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Have you ever wanted to complete a marathon....TNT can help.

Is completing a marathon, half marathon or triathlon something that you are interested in doing?  Have you ever dreamed of doing this one of these events in Paris, Hawaii, or any other of the famous destinations around the World?  Is competing in one of these events something that interests you but you don't know how to train for it? 

Well if you answered yes to any of these questions I have the perfect program for you.  The Leukemia and Lymphoma society has a program called Team in Training that will help you accomplish all of these questions. This program is such a wonderful program for those interested in any of endurance sport because not only will you be making a difference in your life, but the lives of 67,000 Canadians living with leukema, lymphoma, and myleoma.  While part of the team you will have a fundraising goal to reach which will go to the Leukemia and Lymphoma Society.  Being part of the team has many benefits though: When you sign up you are given access to a professional coach which will give you support and advice.  You will have weekly meetings and training sessions with others in your area (if there are some available).  The Team in Training will give you great Web based tools to help you fundraise. 

In addition to having access to teammates and a professional coach, there are two amazing benefits to being part of this program.  First, you will get access to some of the most famous endurance events around the World even if they are sold out to the public. Second, you will receive transportation, lodging and race entry at the even of your choice (your fundraising covers these as well).

Go to http://www.teamintraining.ca/ for more information.

I think this is a wonderful program and perfect for anyone interested in endurance sports.  Go check it out, even if you aren't that interested.  You never know, this program might just get you inspired!

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My Week In Review - 11.19.10

Well it is time for my weekly update.  Truthfully there isn't much to report from the past week.  This past week was the toughest week of my cycle so I end up not doing too much while dealing with the exhaustion from chemo and withdrawal from steroids.  Although this cycle was a maintenance cycle and the doses were a slight bit lower I still had some tough periods this week.  It all came to a head Wednesday morning when the withdrawals hit their worst.  Thankfully they only lasted half the day as opposed to the two full days of withdrawals in cycles past.  This cycle brought a slight change to my cycle by getting the chemo injected on Wednesdays instead of Thursdays.  This really isn't that big of a deal except that when going through the withdrawals the chemo makes you feel kind of crappy.  Thankfully it only happens once every three weeks. :)  Other than that I have continued with the treatment of my foot.  That still is taking over my life by not allowing me to walk properly and affecting my lifestyle.  Somedays I just wish it was done and I could move on but I know I have a few more weeks of treatment I am sure.  Thankfully they are both getting smaller on a weekly basis.

I started looking into the idea of joining a gym.  I think working out on a daily basis would do wonders for my mental state and really help with my recovery.  I won't even start to begin to look at that until my foot is healed.  Also I am a little hesitant to start something like that with the transplant coming up.  Again stuck in that limbo waiting :).  If my foot gets healed and I still haven't had the plan to start the transplant I will go ahead with the gym.  So it more my foot holding me in limbo than the cancer.  That is the most frustrating part about it.  I found this really cool gym where they teach boxing.  That would be pretty cool wouldn't it...:) I have heard that that training is the very best workout you can get.  What do you guys think?

Other than that it was a pretty blah week.  The weather has been terrible all week so I wasn't able to go get any good pictures.  I went out on one afternoon but with it being so overcast the lighting was terrible.  In addition, the ground was wet so I couldn't do my usual rolling around on the ground looking for cool point of views.  Hopefully next week will provide some better camera weather.

Well I hope everyone has a great weekend this weekend.  We are decorating the apartment tonight and tomorrow with the xmas stuff.

Aaron


There isn't much to report on from this past week.  This week was the tough week of my cycle.  It is tough because I usually get some exhaustion from the chemo injections from last week coupled with going through steroid withdrawals.  Compared to tough weeks in the past cycles, this week wasn't terrible.  I only had one really tough morning on Wednesday with the withdrawals.  There


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Cancer...What They Don't Tell You About

So what is actually the toughest part of cancer?  Most people would assume it is the difficulties associated with the treatments.  Now I would be lying if I said that these were easy to get through because the side effects associated with chemotherapy and steroid treatment can often be just nasty.  I have found the most diffiult part of the cancer battle is actually the mental one.

You see the physical stresses that get put on your system always have a bad guy.  You always know what is causing the pain, so it is easier to accept and deal with the pain.

Of all the mental battles that a cancer patient goes through, nothing is tougher mentally than dealing with boredom.  Thats right I believe dealing with boredom is actually tougher than dealing with the worst physical symptoms the treatment can hit me with. It isn't just boredom, I am just using that as a catch all phrase.  There are actually two prongs to it.  First there is the actual boredom.  When going through cancer you spend a ridiculous amount of time alone and in that time you need to find things to do.  And lets face it, there is only so much TV you can watch :).  The caveat that makes it tough is because of the condition and treatments you are going through, the activities you can participate in are sometimes limited.  The second prong to the mental battle is actually dealing with being in limbo.  Once you get diagnosed with cancer everything in your life gets put on hold.  At first everyone in your network goes into limbo too but slowly everyone starts getting back to their regular routines and then it is just you left sitting in limbo wondering when you will get your life back.

I have been pretty good at getting dealing with these two difficulties.  When I first got out of the hospital I used to get extremely frustrated with the boredom and living in limbo but have learnt to accept them as part of my path.  One technique that has worked well is living more relaxed (which for those that know me it is crazy I could have gotten more relaxed :) ).  But I am always open to more suggestions, so anyone with a suggestion to beating the boredom I am all ears :)



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So Why do I Blog?

Blogs...what would ever cause someone to committ to writing an article everyday (or close to everyday).  There are many reasons to write a blog.  Some people write it to make a business out of it and make revenue, others as a way of sharing ideas or gossip, or as a way to update friends and families during illness.

I often get the comment, "I don't know how you do it, how you can write everyday".  Well I can tell you that this blog has been a work in progress throughout the whole year.  It actually started as a word document on my personal laptop where I was just journalling all my feelings and thoughts as I was living this horrific experience of starting to live with this disease.  The journalling was sporadic at best, but I wanted to get some feelings down on paper.  It was twofold, I knew that going through this process was going to go by so quickly and in a blur I wanted to remember what I thought and how I going through it.  Secondly, journalling is time and again regarded as one of the most theurapeutic exercises one can do when working through tough times.  I continued this practice off and on just as a way of recording the events that were happening.

The blog didn't come about until I was lying in my bed in the hospital and was pondering how I could use my experience to better myself and others.  That is when I realized that I shouldn't be keeping my thoughts and reflections to myself but sharing it with the world.  I found other people's experiences so helpful when I was going through my treatments that I felt I had an obligation to pay it forward so that others might benefit from my experiences.  My biggest hope and dream is that, the trials and tribulations I have gone through with this will benefit someone else in a positive way.  And it was with this vision that my blog was born.  For the past couple months I have been spending lots of time redesigning it the way I want, and figuring out what I want to write about.

So the question remains how do I write everyday.  Well the first little secret I have learnt over the year is actually get a couple posts ahead so I only have to write when inspired ;)  (Keep that between us though :D )  I am definitely not blogging to make a million dollars.  Although I do have ads on my page the net me a couple cents a day.  It just feels good to see you make a little bit of money for all the work that goes into writing :)  To tell the truth my blog almost died just over a month ago.  I was not entirely satisfied with what I was posting about and didn't really feel like it was living up to the vision with what I wanted to accomplish with the blog.  Instead of killing it though I took sometime and re-examined my vision for the blog and what I wanted to write about.  It was then I realized that my true passion was my reflections and those were what people would take from my experience most.  I could do million of lists of how to get through chemotherapy but those are a dime a dozen on the internet, and not many of my readers needed that information.  For me it became evident I could focus more on how we can use my experiences to make all our lives better.  My ultimate dream would be to write a book when I am through this whole experience that might add value to other's lives, and this has been providing a great avenue to work out my thoughts and reflections.

I am a very introspective person constantly thinking and reflecting.  Going through this experience has only made that stronger because you spend so much time alone during the days.  This is where the writing of the blog helps because it gives an avenue to express my thoughts and feelings.  For the first couple months of being sick I spent more time watching tv and vegging out.  But over the past little while as I have become more inspired by hobbies and writing, the tv rarely goes on anymore.  I spend most of my mornings listening to music and writing.

Well sorry if that rambled a little bit today.  I just wanted to share with all of you the reasons why I write.  I did joke earlier about the lake of monetary compensation with the blog, but the true compensation that I value the most is that all you, my readers continue to enjoy my posts.


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Everything You Need...Life's True Lessons

How can a blog about the trials faced, lessons learned, and reflections gained of a person going through cancer truly add value to my life if I am not going through it myself?  Well this is the fundamental question I faced when trying to develop content for this blog.  It wasn't until I took a step back that I realized that going through this hellish experience was providing me with more insights and learnings than most people would only dream of getting by my age. 

We all go through very difficult times in our lives.  If there is only one thing you can be sure of, it is that I guarentee you will encounter a difficult time in your future.  But why should you go through it alone and have to learn as you go.  At their essense, all difficult situations are similar.  Sure they come in many forms (Cancer or other health problems, death of someone close, divorce/seperation, serious injuries, etc.) but at their essense the skills required to get through them and lessons learnt are almost always similar.  This is why I recently wrote a post about Personal Tragedies and why we shouldn't keep them a secret.  We should be sharing what we learn going through these tough times, so the next person can achieve greater growth and pass that along.  I found this poem on the internet that sums up the true lessons we learn in life perfectly.

"I asked for Strength.........And God gave me Difficulties to make me strong.
I asked for Wisdom.........And God gave me Problems to solve.
I asked for Prosperity.........And God gave me Brain and Brawn to work.
I asked for Courage.........And God gave me Danger to overcome.
I asked for Love.........And God gave me Troubled people to help.
I asked for Favors.........And God gave me Opportunities.
I received nothing I wanted ........I received everything I needed!

Today is the last day of your life........so far " - Author Unknown

Some recently shared a reflection with me that I thought would be the perfect way to end today's discussion.  "Why do we never wish on people the negative experiences that can turn them into the most admirable of characters."  Just some food for thought :)

Have a great day.

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