Don't Forget to Update your Blood Donations

Hey Everyone,
A year ago I created my blood donation challenge as a way to give back.  During my induction hospital stay I realized just how important blood is.  Many times leukemia patients require blood products everyday while their counts are suppressed. It made me feel so thankful while I was receiving my life saving blood product.  The other emotion I felt was sadness because with my illness I was never going to be able to repay the blood bank.  That is why I created the blood donation challenge so that you my network could help me repay the huge debt I owed.

Well now the year is coming to a close (end of Jan) and the contest is coming to a close.  Please update with you name and donation date all your donations so that I can update my tracker.  Remember there are three places you can update
1. Facebook Blood Donation Challenge Discussion - for those that have facebook this is a good way to update
2. For those without facebook please either post a comment on the Blood Donation Page or comment on this post.

Remember even though the contest is coming to a close keep giving blood.  You are literally saving people's lives!


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Cancer Reflections - A year with Leukemia

With such a wonderful christmas gift given to me and allowing me to start the New Year with a fresh new start I have been reflecting over the past year quite a bit.  It is crazy to think but in just 3 weeks will be officially one year since I was diagnosed with Leukemia.  It is a wonderful and humbling experience to approach such a milestone because on that day I didn't even know if I would still would be alive at this point writing to you and yet here I am.  I have been taken to the "brink" twice, once in induction and then again in my transplant but I am still here kicking and smiling :)  Now I got through both these adventures fairly unscathed compared to many.  I attribute that to a variety of things first I think I my attitude and overall strength had something to do with it, but I know that is not nearly enough.  Cancer doesn't succumb to attitude only and through reading and seeing with my own eyes it is clear it doesn't discriminate, it will take the strongest person who does everything right without blinking an eye.  So what else got me through then?  Well first this past year has renewed a faith that lay fairly dormant the past couple years in both me and many of you in my support network.  In addition, the amount of prayer groups that I have been added to has surely been humbling and life altering.  Many people pray for me that don't know me or my situation.  Awhile back I had once come across some literature about the power of group prayer.  It talked about how when many people in all different places focus their mind on a singular thing miraculous things can happen.  And lets face it getting through all the chemotherapy, radiation, being immuno-compromised, and having someone else's cells working in my body is nothing short of miraculous.  I do feel blessed for such good fortune.  I realize that I still have a long road ahead but I journey down that road knowing each step is a blessing not soon to be forgot.  Finally getting through cancer requires a little dumb luck.  Thankfully I had a good deal of it in both hospital stays and was able to get through without any serious infections.  I still obviously need that luck but am very thankful for the luck I have been dealt so far.

Over the past few months I have often referred to it as a tragedy when going over certain reflections.  I use that term because when you are first diagnosed it does feel like a tragedy. Your entire world is thrown upside down and things that were once important become instantaneously miniscule.  The only thing that becomes of importance is your survival. Amy asked me today why a cancer patient celebrates the date of their diagnosis. At first I did not answer and did not know, I thought maybe because I was still going through the process was why I didn't have the answer. I spent the evening reflecting on it and came upon the answer.  To everyone cancer seems like a tragedy even after the patient gets through the process.  But for the survivor at some point during their journey it transitions away from a tragedy and is actually a blessing.  The journey teaches you so many lessons and changes you fundamentally that no matter how hard the journey was you would never go back and not embark on it.  And that is why we celebrate the date of diagnosis, it is almost like a birthday of sorts, the day your life changed forever.  So don't feel sorry for those of us that have been dealt the hand of cancer, we were given a gift we would never exchange ;)

I thought over the next couple posts I would share and relect of some of the lessons I have learnt over the past year. 


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First Follow-up Appt

Hey Everyone,

Just wanted to send a quick note to let everyone know the first follow-up appointment went well.  The process isn't much different than the appointments I did all last year.  I go into the hospital get my blood drawn and then wait for the results and to see the doctor.  The only difference is I will be spending a lot more time at the hospital over the next few months.  I have follow-up appointments with the doctor's twice a week for the forseeable future.  The main reason for this is so they can closely monitor me for signs of GVHD and alter my medications accordingly.  Also, the immunosuppressant drug I take has to have farily particular levels in my blood stream based on weight so they are monitoring that and adjusting those doses as well.  The only other thing is I get top ups of crucials chemicals my needs like magnesium.  The immunosuppressant burns magnesium off so I am always getting top ups on it, in addition to the pills I take at each meal.  The top up takes 2 hours for of the magnesium running through the IV so I will be getting lots of reading done :).  They can't run it any faster because magnesium is actually a hot metal and heats you up as it is put into your body. I have started reading Lance Armstrong's Its Not About the Bike again.  This book provided so much to me when I was a cancer patient and going through the intial diagnosis and coping stages with my disease.  I now want to see what insights it will offer on what many people regard as the toughest part of cancer, which is the survivorship and moving to the new you :)  I also plan to read over a couple of my other favorite books and I just picked up two books by the Dalai Lama.  So we shall see if I get any insights to pass along :)

A nice part of the clinic is I get to see some people that I had met over the year and moved on to transplant.  Tony my old roomate was there which was really nice to see.  He is 6 months post transplant.  We didn't get to have a super long conversation because he has a cough so I was a little wary of spending too much time with him, and I could tell he did not want to pass his couch to me.  It will be nice to see him and keep caught up with him.  One of my bigger regrets of last year was him and I lost touch as the year went by and we had become so close and helped each other so much in through induction.  Being in the same clinic will really help us keep in contact. There is a very fine balance to this recovery where you need to be completely inwardly focused almost selfishly focused on yourself, but at the same time you want to continue to lend support to those that you become close to through your treatments.  I am still learning the balance but pretty good at it I feel :)  I do know that the next 3-6 months are going to be pretty much all about me, because I want the best recovery with the least setbacks as possible and you can only do that when you focus on your own recovery.

All my blood counts were good and my GVHD has settled down a bit.  I don't mind the GVHD of the skin because it is just rash that doesn't bother me.  The downside is I am on steroids that weakens my muscles (I get the shakes sometimes) and I have to take my blood sugar twice a day.  I have been very diligent on my managing the sugars through diet so thankfully it has only been two finger pricks a day and no insulin.  The GVHD of the skin isn't a terrible thing because it lets me know those little blood cells are running around working. 

Well hope you are all having a good week.

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Day +19 - Getting Used to Being Home Again

Good Morning,
Today is Day +19 since my transplant.  I have now finished my first weekend at home (3 nights).  It has been so nice to be home.  There is a certain peace you feel in your own home that truly can't be appreciated until you are forced to stay away for an extended period of time.  There is a quiet and solitude that just can't be duplicated any other place.  During both hospital stays I always thought that PMH was a very quiet and peaceful hospital, especially the last stay being in a single room.  There was fairly loud fan always running in my room which filtered all that air that actually got to me and kept a constant positive pressure of air against my door so when it as opened any air bourne germs would be shot back into the hallway. This fan never bothered me until my first night laying in my bed at home when I realized how quiet the room was compared to the hospital. 

The first couple weeks of being home is always an adjustment. First you have to relearn to balance your energy levels.  It is very easy to overdo it at home because everything is so much more familar.  So I have to be constantly cognisant of my energy levels.  I need to push myself each day so I continue to get stronger but not to the point of exhaustion.  So far I have had a little more energy than when I got out of induction but I am sure my energy will be a yo-yo from day to day just like before.  There has been a small thing to get used to which has been wearing jewerlley again.  Both times in the hospital I took everything off and kept it off until discharge.  It starts because when you go through the heavy chemo you can swell and jewellery is dangerous and this time around in radiation you can't wear anything in treatment.  Since I have been discharged I have put back on my medic-alert, engineering ring, livestrong bracelet, and added another bracelet to the mix.  Leukemia and Lymphoma society has a Relentess Red rubber bracelet that I wear now.

The truly largest thing to get used to being home is medicine regime. My pill schedule is actually very complicated, especially in the morning.  I pretty much am swallowing different pills or medicine from 6am to 2pm at 2 hours intervals.  Yes that is right I have to set an alarm at 6am to get up and take my pills.  Some days I can back to sleep, others I can't.  The main reason for this is I am prednisone (a steroid) to help control some GVHD I developed in the hospital.  I developed a skin rash which is completely expected but they use steroids with the immunosuppresants so the GVHD doesn't get to out of hand and start attacking my organs. The main side effects of steroids is they make you a little more peppy so sleeping can be hard, hungry (although this go around isn't as bad in this department). In addition, in induction the prednisone caused me to become diabetic so now that I am back on it I have to check my blood sugars twice a day.  This dose isn't as high as induction and I seem to be being able to control my sugars through diet so far but it is still extremely annoying to prick your finger twice a day. Hopefuly they will taper back the prednisone soon as the rash is going down. Over the 6 months to a year the doctors will continue to play with my immunosuppressant doses to get me off of them and the new cells happy in my body but wih GVHD flare ups they will have to increase doses until they are controlled.  Should be an interesting year of keeping track of my medications.  Thank god for blackberry's calendar and reminders it really helps keeps everything organized.

Tomorrow is my first outpatient appointement so not sure if I will be able to post tomorrow but I will update how it goes. Hope you all have a wonderful week this week.


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