Leukemia...eh!?

Summa Thyme Blues

2006-08-03T21:01:00.000-07:00

Okay, okay... I guess it has been four months since the last entry. Did you miss me? I just haven't been around a computer and the right mind set to type out everything that has went on in the last few months. As far as my health goes...Everything has been up to par. I have only been to the doctor four times in the time period since. Unfortunately, added up, treatment of cancer and the after effects have given me problems. That problem would be my hip. After the use of prednisone for so many months my body has come out with a not so nice after effects; decreased bone density. But a hip problem is not very fun. Hopefully it will be able to be corrected with some non-invasive protocol. Surgery may be the only option though. I will see an Orthopedic surgeon in the middle of the month and again in September if nothing has been worked out. Sadly it is a little hard to be active outside with a bummed hip. Even if it is this way; it's hard to swallow, but a bad hip is much better than cancer. Hopefully it will get better in time.

On to the rest of my life: April went along, classes finished...I studied when I felt it was necessary and I came out in good shape in the end. I was glad. I was done school for four whole months (I am headed back for more this September for Engineering at Mount Royal). So as April came to an end...and I turned 20... I had finally become an adult, none of this teen stuff anymore. I decided to head to Quebec for seven weeks. Well, using the bursary I headed over to do my French Immersion and have a good time. I met up with some friends from before and then headed to Riviere du Loup which was my home for the next month and a half. Those six weeks were the most fun I had had in a very long time. I met a lot of new friends as well as spoke in french the whole time(well of course I cheated a bit..but you know.) I will definitely be doing the trip again, it is a great experience!

After Quebec, which was so fun I was disappointed to leave and leave all my new found friends behind, I headed back to Calgary for a week and saw the doc. When all checked out fine, I hit the highway to the sunny Okanagan, which was blazing with heat(ALRIGHT! Perfect timing!) I hung out with my cousins and Granny and other family around the area and met up with my mom. We spent most of the time on the lake as it was too hot for anything else. Finally after getting my tan on... Headed North.

Home has been good. You expect everything to change, but it never really does, its funny that was. At the same time nothing is the same. I started work...At LP: I am a Summer Student, so I get al the crap jobs, but it pays pretty good, and as long as my hip can hold up a couple more weeks, I will be laughin'. I have met up with some friends, who seem to be the same people I left, way back when. I am staying with my Nan so I am geting fed well, and it is easier to get to work. My sister picks me up everyday for work. Life just keeps going on, and it never stops. Sometimes we get all caught up and wound around, and never stop to see what we have. But I got what I need, and just keep pluggin' along!

Sweet Summer! Justin:)

April Showers...

2006-04-02T17:56:00.000-07:00

Yes I no what the date is, April 2nd and it has been a month and 8 days since my last confession....I mean....uh...the writings on the wall. The (not too) constant rambling ramblings of me.

Has anyone realize what date it is... My anniversary, or second birthday if you will has passed. Officially I am 1 year new(as of 9:00pm Mountain Standard Time, March 18, 2006). The DNA of my blood anyway. A recap to the past year.....Here we go:

March 18- Received Stems Cells, weight was about 175lbs. Very Skinny and sickly looking. Muscles were the weakest they have ever been. I had difficulty walking up the stairs. I was constantly cold. I would wake up and my sheets would be soaked. I was cooped up inside for a long time and wore a mask in public (didn't go many places). Had guitar lessons for a few weeks, and tried to get motivated with it(hopefully I'll pick it up soon again).

Th spring passed pretty slow, but gradually I picked up strength and was making good walks in the park and dog walk most every day. I was having some trouble doing anything constructive. I watched alot of tv and ate a lot of food. You could tell, I was ballooning pretty good.

By June, it was going to a epic moment, I would return home for the first time in just short of a year. My dreams however were crushed as my skin began to peal and supposedly my new food body parts were attacking me. So medications were shot up, and light therapy was commenced.

Prednisone made my face balloon (they call it moon face) and my joints; especially my knees and left hip were no use for walking(according to my bone scans both had significant bone density decrease, I get results for my last, next week.

On Thursday(the 30) I participated in the Mount Royal...now to be annual event... Cancer Head Shave. I managed to raise 310$, not as much as I was planning to but everlittle bit helps. The school managed to raise 27,000$ and about 75 people shaved theirs heads. So I am now bald again, and had to go for the complete shave.

Things are well, except for my damn hip is still bothering me, and now that spring is here I just want to run!! I also recieved my acceptance to the immersion program I applied to before February. I will be head to Quebec for 5 weeks this May and then return home for job, and just being home! It will be a great summer!

I will really try to get back to y'all soon.
Justin:)

To My Bud

2006-02-24T20:10:00.000-08:00

I found out yesterday that my puppy died. It kind of sounds stupid, but I can honestly say he was my best friend. He was eleven years old, so pretty old for a dog, my Golden Retriever. Everyone who met him loved him too, and if you didn't you really missed out on a true heart. Rolli, I will miss you so much, there will never be a dog better than you. I will never forget you. You'll always be in my heart! Rest in Peace Rolli. Buddy Boy.

Justin:)

une Pause

2006-02-21T21:06:00.000-08:00

Reading break...hmmm....are they joking? Well, I guess not. I will be doing some reading this break, the semester restarts in less than 150 hours. But who's counting? The first half of the semester seemed to go pretty fast, no telling that the next part will go close to the same. All my classes are going really well, as long as that Math test I wrote on Friday comes back good alright next Tuesday. I'm confident... I think. College life has continued pace as well. Soccer has been alright, except our team hasn't won a game. Oh well. The next one will be a win for sure! Hockey hasn't seen much play time, our games are far and few in between. But the gym is still happening, although my workout have seemed to get less exciting, hopefully I will pick up the pace. I am still well on my way to my goal for May.

Healthwise: I am sick again... cough and stuffy, although not having full blown symptoms, its still annoying, maybe this will be an ongoing this until I have been through every bug I have had ever since my childhood. Lets hope not! I AM OFF PREDNISONE! I was also off Cyclosporin, I was on a Justin taper...Its where you forget to take it a couple of times, then you just 'fugeddabotit', oops. Yeah, the docs don't like that too much. The nurse didn't apreciate the little white lie I told to her either...I was in dung. But not really. It is a very comforting environment dealing with the nurses and docs at the Bone Marrow Clinic. I always get a laugh or two. I sent off a letter to my donor as well. It is only about a month before I can officially contact my him, non-anonymously. I am excited, hopefully I will be able to meet him in person in the not so distant future.

I'll talk to y'all soon, Justin:)

forty nine days to the year

2006-01-28T13:00:00.000-08:00

The last few weeks have been fairly busy, but in a good way. I am definitely enjoying this semester even as it is a lot more intense than the last one for sure. I had to take last weekend of though....I went skiing at Fernie. It was awesome, and went really well. I haven't skied for probably two years, and these were probaby the best conditions I have ever skiied. The mountains had about a foot or more of fresh, new white stuff. I did pretty well for not having skiied for a long time, my legs weren't even sore, but I was tired after both days of skiing all day. I was even taking jumps...small of course; and I wasn't doing turns or flips, I was cautious as not to break a leg or anything stupid like that.

I think the fresh mountain air was just what I needed, and I was able to get over my cold. I was feeling alot less congested and now I think I am back. My white blood cells were down two weeks ago due to my cold, so I am a little excited to go back and get my blood tested again. Also, my mouth problems seem alot better, so with any luck, I wll reduce my prednisone again, maybe completely, not that it seems to affect me much anymore. Nonetheless, it would be nice to finally not be a druggy.

Speaking of giving blood, it's disappointing that I can no longer donate. There was a donation clinic at the school this week. I am glad that many people do take the time to give blood. Many people need it, and I was definitely one of those people. I took a brochure on how to volunteer with Canadian Blood Services and plan to look into it further. If I can't donate blood, then I could help with promoting people who can to do it.

Now, I'll briefly discuss the election. I will say I am glad that the Conservatives only managed a small minority, as their more extreme policies(in my opinion, and I'm allowed to have one 'cause I voted) have a leash that can be tightened when need be. I do hope this session of Parliment works and we do not have to go back to an election soon. But I still worry. Canadians must wake up, we need a government who will stand of for Canada. I am concerned with issues such as the Environment that all Canadians should hold as priority. I won't go into debate.

My next hockey game is tomorrow, we'll probably lose again, but it's fun no matter. I joined intermural soccer at the college too, and was designated(volunteered) él capitan, it will be un too. I am still a regular at the MRC gym which is an awesome facility, and sarted playing squash this week too. My but was sore from the fast movements and ducking out of the way of the small, but "deadly" squash ball.

Peace Out A'Here, Justin:)

A New Year

2006-01-07T20:01:00.000-08:00

Since I missed the whole month of December, I guess it is time for me to leave another little message. First, I'd like to say Happy Holidays, hoping everything was very festive and went well for you and yours. My Holiday was very good, I headed back home for the first time in about a year and four months. Nothing seemed to change, which is weird, but also comforting at the same time. I was happy to see lots of my friends, who I hadn't seen in about the same amount of time. I was a good catch-up although I wish I could have stayed one more week, but I'll be back again soon, no more year and a half between visits.

Happy New Year!!! Let's hope that this year is very prosperous along with good health... I'm no starting out very good, having developed a cold over the break... The years first test of my baby immune system. I'm sure I'll get over it soon. My resolutions: definitely to live life to the fullest, you never know what is going to happen; stay in touch more with friends, and to make new friends here in Calgary. Keep active, since October I have made good progress with working out....My goal: Abs by May.....but I have kinda been thinking March would be achievable....lol, we'll see. I am going to sign up for intramural indoor soccer which will help with my activity level, and give variety to the gym, Salsa starts again on Tuesday, and I still have the odd hockey game with the C-vivors team(man I sound really busy). To do well in school is my other resolution, I guess that can be a resolution, I did well last semester(A- in boths courses) We will see how well I do with five. Biology....French....Spanish....Classics.... oh yeah and Calculus....Yikes!!

Hopefully with all my school work I can stay on track....My first real semester of college....Here we go!!!

Peace Out, Justin:)

Updation

2005-11-30T22:13:00.000-08:00

Hey, so November is almost over already, it's hard to believe, and I'll say it again, time flies, especially when you aren't in the hospital, although I still have my weekly visits, and pokes in the arm each time where they drain me of a couple vials, but I'm producing my own, and as long as that keeps going I'll be alright. I get to skip out this week from the doc visit because she gave me preauthorization to lower my meds for next week too. The focus.....Prednisone. Right now dosage is running at 12.5mg per day. By Thursday projected dosage: 10mg. Blood work has been good, everything in close if not in normal range and has been fairly stable the past three weeks.

School is almost finished. My first semester of college, a slack-ass one, I'd say, so I still had time to procrastinate. Still not out of my highschool days habits, but my marks have been fairly good....We'll see when finals come around. At least I have lots of time to study(I'll be cramming night before for sure.) I am deciding on classes for next semester, not really sure for the direction, but this year won't really be part of any certain pathway, mainly it is just a step in the right direction... I hope.

The past two weeks I finally got up on skates, the first time in almost two years. That's a long time but I guess it's like a bike, you never really forget. They were a little dull though, and I don't think that enhanced my performance, which wasn't the best anyway. It was fun to get out and play hockey, I was sweating pretty good. So hopefully hockey keeps going, my C-vivors team hasn't got a lot of games lined up, but hopefully they will be a little more steady in the new year, and if I can wake up on Friday mornings, I can go play at 6:45... I did once so far.

As Christmas approaches, I am starting to feel more excited. It will be the best present to finally be home, even if it is only for a short while.

Justin:)

A Day of Significance

2005-11-04T19:50:00.000-08:00

Can you believe it?! I have Leukemia. I just don't know what to say, but how is this possible. How can... Me... Am I going to die..... What.... Leukemia??!!

Those are just some of the thoughts that were racing through my head exactly a year ago. I still sometimes drift off into a dream world and have to really explain to myself that I did in fact have Leukemia. It was definitely a nightmare, but it was real. All too real and still is a fact of my life. I have struggled through this past year, but it has not been in vain. I have my life to be happy for and hopefully many years to come. The whole thing is not over of course, but the highest mountain has been defeated. Just a few more hills(or smaller sized ones) to over come.

My memory through everything has remained very clear. I remember distinct details from the very moment the first doctor came to explain. I didn't know what to do, I couldn't cry, I couldn't let him phone home. My life as I knew it had ended. What the future would hold was extremely uncertain.

Of course everyone knew I would make it, but going through it is another story. I never gave up hope, even on my lowest lows. Here's to surviving a year after diagnosis, and here's to many more!!!

Justin:)

Thankful

2005-10-23T10:46:00.000-07:00

It's a little late, but there is always time to say thanks, no matter how late it is. I am so thankful for everything in my life, especially for my life itself. Things have changed so significantly for me, it has definitely been a rollercoaster ride, but I think in essence, that is what life is supposed to be and you just have to ride it. Things go up and down and you just have to focus on the upside of things no matter how bad things seem to be.

Things haven't been too bad the past little while, I was slowly coming down off the steroids, unfortunately my skin acted up a bit again so they went up a couple notches again and we'll slow down the decrease. It will be nice once everything stabilizes and I don't have to worry about it anymore and can be off the mouthful of drugs that I am still on. My stomach hasn't been feeling really great when I take my pills, I think it's becoming intolerant or just plain sick of having different chemicals pounded down everyday. I'm a drug addict, though I am not addicted, I am just forced to be. Eventually my body won't have to rely on the pills, and be well on my way to a more healthy outlook.

In fact, I am already turning to a more healthy form. For the past four weeks, I have been working out. I have a bit of a routine going, working my arms pretty good, cause I found that I can no longer do one pushup, which my weight does have some bearing on that. I am about 230lbs right now, which is 15 lbs heavier than what I weighed before becoming sick, and after the ordeal I am heavier, with significant muscle loss and that definitely won't help you do a pushup. So after four weeks of trying to act muscley, I actually see some improvement to my waist size. Hopefully I'll fit my jeans again soon.

School has been good, I have been slowly meeting people, which has made it a little more enjoyable, and the work hasn't been too difficult, but I am only doing two courses, so that could be the explanation. It is kind of nice to have a purpose to get out of bed in the morning, after so long of not really having anything to do. Even though somedays it would be nice to just stay in bed, but I guess that gives the weekends a new meaning for me again.

Thanks for being patient with my slowness to update this. Overall things are looking up and thanks for checking up on me so often.

Justin:)

A Successful Walk!!!

2005-10-02T18:40:00.000-07:00

Why did I walk... To join the hundreds who turned out in support of people like me, people who have had to deal with a disease, Leukemia. It was really great to see so many people out walking, even though it felt like it could snow at any point. Everyone had a balloon, red stood for those who were walking for someone, the supporters, white was for the survivors. Each balloon had a cool little light right inside so we could in fact "light the night". I was able to walk with several of the nurses who looked after me in the hospital. It was nice to see them out there, since I haven't went back to the ward, I was there enough already. It is amazing how much they see though, and how much they do. The nurses really affect the patients as they spend weeks or even months in their care, and I have to say the nurses on 57 are some of the greatest people. I really enjoyed just walking with them, it's a little different than being a patient. I even went out for supper with them. Light the Night went very well! My total for funds up to now is $664, way past my goal of $500, and I am sure there are still donations on the way... So to all of you who showed your support: A GREAT BIG THANK YOU!!! I would hug you if I was near.

Justin:)

Light the Night

2005-09-21T18:19:00.000-07:00

As you all know, the reason I began to write this blog is to express myself as I went/go through a difficult and challenging stage in my life. Leukemia is the reason, the reason I now come to you in support of those who have been through, and will go through a similar, yet hopefully one day, preventable and 100% curable disease. Leukemia and Lymphoma rage through the world taking many casualties in its wake. Me being on of them. I was taken down, but was given the chance to fight back, and now I am getting my feet back, ready to run again. Here's something that I want to do, and all of those who have been supporting me, can continue to help me out!

I have so far just registered as a participant of Light the Night, an organized walk, kind of like the Terry Fox Run. Only instead of raising funds for Cancer research, it is run through the Leukemia & Lymphoma Society. As I have first hand experience in the effects these numerous diseases cause, not only physically, but emotionally and psychologically, I feel as a survivor, it is time to give something back. As a participant in the Light the Night I want to raise some money to help fight this disease, and walk in memory and support of those who have and also been affected by it. My goal is to raise $500 by October 1st, which is the day of the walk. I ask that you would be generous in your donation, but if I can get fifty people to donate $10 each, my goal is definitely attainable.

WHAT IS LIGHT THE NIGHT ?
Light The Night is an international fundraising campaign to commemorate and celebrate lives touched by cancer. It has been taking place across the United States for the past six years; however 2005 will see the first Light the Night
Walks in Canada!

WHY WE WALK?
• Leukemia, lymphoma, & myeloma are cancers that originate in the bone marrow and lymphatic tissues
• An estimated 67,000 Canadians are currently living with blood cancers
• Every 40 minutes, someone is diagnosed - more than 13,000 new cases are expected each year
• Every 80 minutes someone dies from one of the blood cancers
• Leukemia is the leading cause of disease related death among children under 15
Impact of The Leukemia & Lymphoma Society of Canada
• The Leukemia & Lymphoma Society began operation in 1949 and on July 1, 2004, affiliated with the Leukemia
Research Fund of Canada
• $378 million has been spent on research to date
• Currently funding 493 researchers in 16 countries
• Planning to pilot a series of newly-developed and tested patient support services in Canada including on-line and
toll-free patient education plus back to school programs for children living with one of the blood cancers
• In the past 40 years, the five-year survival rate for children with the most common form of leukemia has more
than tripled!
• The five-year survival rate for non-Hodgkin lymphoma has risen from 31% to 52% since 1960. In children, the
five-year survival rate is now 78%

Please help me to help others who have been affected by Leukemia and Lymphoma!

To donate please go to this website:

http://www.active.com/donations/fundraise_public.cfm?key=ltnWetherill

If you are nervous about Credit Cards over the internet you can send cheques payable to:

The Leukemia and Lymphoma Society

my mailing address:

Justin Wetherill

6523 Laurentian Way SW

Calgary Alberta

T3E 5N4

Ho Hum

2005-09-16T18:03:00.000-07:00

September seems to be just flying by, I guess that's the thing with time, it never stops, although sometimes it moves very slow. I think it goes slower when you are bored. I am not bored, so I guess that makes it go faster. It will be Christmas before we know it, better get your shopping done early.

Three months will go very fast, hopefully Christmas will be a time I can get home, and my skin issues will have resolved, but if not I guess I continue the process, what ever that is. Most likely I will hang out in Calgary for this immediate stage of my life, continue with some courses, increasing the load depending on what I feel like. I guess I should wait to see how well I do with these initial courses, but I am sure they will go pretty well.

I already have learned a lot of Biology being sick, although it goes into more detail in class, a good way if your willing, is to be sick and have the doctors and nurses explain things to you. Although probably not the preferred method of learning for most.

Parlez-vous Francais, maybe I will be a bit better after this course, so far it's almost learning things over that I have forgot. I will have to do a skit sometime in the next couple of weeks, it might be a disaster or it could go smoothly.

Fitness classes this week, only cost a dollar to try it out, so I tried it out. Body Blaster, and Boot Camp, both were pretty good workouts, and I was sweating by the end of each. Depending on the scheduling of them I will try to make it to one or two each week, I still have lots of time on my hands. Getting back in shape is a real priority, but I just wonder how much the drugs are affecting my activity abilities or effectiveness of the exercise I do do, I still feel(and look) very large.

Talk to you soon

.Justin:)

What Is The Up

2005-09-02T18:41:00.000-07:00

Feelings... I have never been really good with expressing them. I think I hold back a lot, and don't always deal with them the way I would like. Maybe I don't know how, maybe I am just like everyone else. Today was a harder day today. Emotionally I had to break down. Being apart from my family, I thought it wouldn't be that hard, but it seems like it is getting to be that way. I will just have to tough it out some more. But after a year I guess it would not be normal to not feel home sick. Man, a whole year!! I had to cry... Let the tears stream for a bit while talking to my dad. He misses me a lot, I haven't seen him since February. So macho, but I never been afraid to cry, no matter how stupid it feels sometimes, I usually end up laughing at the same time. I could be lacking sleep too, I have been waking up a little earlier than I would like to be. I'll cheer up, my homework will help keep my mind off my troubles.

Justin goes to college. I was a little nervous to go, but excited at the same time. Not too much exciting happened, but my teachers/instructors so far seem like they will be alright. In French I could still understand most of what he said, as it will be conducted almost entirely that way, so if you don't understand spoken French it would be very difficult. Quebec really helped me to become more on the side of biligual, hopefully I will be more proficient after this course. Biology might be more of a challenge, but I think that I am up for it. I have quite a fair amount of time on my hands still so my homework should get done unless I start procrastinating, but I am paying big money for these so I am going to put some effort in. Hopefully in the meantime I will be meeting people, that will also help keep my mind off the distance from home that I remain.

As for my health. All seems to be well at the moment. My skin is almost through its last peeling phase. I haven't been going to light therapy cause it seemed to make things worse, I start again next week, at a smaller time interval... I am fairly certain that the last problems were related to too much UV radiation, more or less a bad sun burn. My platelets made another rebound, back up to 90 from 59. My liver function has bounced up however, being monitored, it is likely due to the cyclosporin as it had a similar effect before. No matter, I would like to be off of it as well as prednisone soon, although things are shaky as to will be the outcome with my skin issue. Other blood counts were good, not perfect but what is ever perfect.

Justin:)

Swycked

2005-08-29T20:31:00.000-07:00

It is really hard to believe, on September 8th it will be one year since I stepped out of my house and left the safety and comfort of the place I call home. I miss it. I miss seeing my family, all my friends who were around to just hang. It just shows you how things change, plans are altered, lives are shaken up and drift back to a somewhat norm. Right now my normal is living in Calgary, I might as well call this my home now, really it has been for the past nine months... You think that is enough time for it to be stamped into my brain that this is where I belong, or where I must remain. It feels like a home, yet I am prisoned here against my personal wants to return home for at least a little while. But so life goes on.

The past two weeks I was lucky to spend with a friend who I have known my whole life. It was nice to spend some quality time with her, since we haven't been really close. But living together for two weeks, you get to know someone pretty quick, their annoying habits and common complaints and all the things that make you sick of each other... It was a great time! Seriously. It wasn't so much a change of scenery or pace, but a little different atmosphere, I felt a little more relaxed I guess, I would have been lonely as the permanent residence(aunt and uncle and kids) were gone on vacation.

With my skin reaction, the Graft vs. Host thing, it's very difficult to determine what is happening at the moment. In my opinion I burnt my skin to blistering in Light therapy and thus began to peel harshly, but at the same time I began Cyclosporin again which is supposed to help with the "disease", but my Prednisone remains high. As I shed this layer of skin, I resist going to light therapy, meanwhile, the length of time I spend in the UV ray box will be reduced... Are you getting all this? So as long as the next layer of skin does not begin to itch, become burned, or whatever else can happen, all is well?!

Summer... It's beginning to look like the end of it. Well I know I didn't accomplish much to mention, but I guess one summer of not doing anything really anything is no big deal, maybe it will be my last. Next maybe I'll be working my butt off, but hopefully just going to some tropical island to do nothing... Doubtful.

This Thursday I start my courses at the college, I was excited about it, but now I am feeling a little intimidated. What am I getting myself into! It has been over a year since I did any sort of school work....I'm scared. No I should be fine, and it's only two courses, and ones that I am pretty confident with both. We'll see how they go. Mostly I guess I am doing it for more social interaction, lacking a bit since I have been sick and being away from home for so long, but it's a pretty pricy way of doing it just for that, so I guess I'll have to work too. Meanwhile I continue to see my doctor regularly and we'll see how it goes from there.

Hope I haven't lost too many reader from my lack of publishing, if you're out there Holla Back Now!!

Justin:)

Still Here

2005-08-16T19:29:00.000-07:00

Now that a whole month has past since my last entry, I figured that it was about time. It's raining right now, and watching the tv deoesn't take much effort so I am multi-tasking.

The past few weeks have seen some changes. My mom went home finally. She needed to get home, look after the other art of the family, get some stuff done at home, quit wasting her summer in Calgary. Of coursespending the time to keep me company is not wasting time, but for lack of a better word, there is a lot more to do when you're at home. This is my home now, I have decided that I might as well just stay here in Calgary. Not knowing how everything is going to turn out (how long I will need to continue with light therapy, how long my high dose of Prednisone will last.) So the plan of not know has moved to staying put and not worrying about when I can ever go home. I consulted with the doctor, and found at I would be alright to venture offto college in September. I won't be enrolling in anything too strenuous. I only applied as a part-time student, and am only allowed to take two credit courses, but as many upgrading courses. I'm still trying to figure out what I will take, but it's looking to either French or Spanish, and Biology. I had almost ruled out doing any courses this fall, but then again I was planning on being home, and thought things would be a little different, but things don't always go the way they were "supposed" to. As we can look back at this past year and tell. But no matter, eventually I will get home. A whole year will have past since I have seen my mom on September 8th. It seems so long, but at the same time it's not a lot of time that has past, just a lot that has happened. Hopefully my skin, which is really the only issue holding me up, will be resolved soon. Unfortunately my skin has flared up again and is back to being itchy, which is a sign that something isn't working right. My prednisone is currently at 70mg, so it could be very well raised up again or remain at this level. I guess the PUVA isn't working as well as it could yet, so we'll see. I am not really sure how fast I will see results. But getting off prednisone would be nice. Over and out for now!!

Entry

2005-07-18T16:15:00.000-07:00

So what is going on? As for the norm nothing at the moment. It's a bright sunny day out, but I can't go outside. The pills I am taking make my skin more sensitive to light radiation, the UV lamps in the booth, but also to the sun, so for twenty-four hours I am supposed to stay indoors, and out of the light... Well not light, but the kind that burns anyway. I am not a total vampire who dwells in the pitch black cave. These light therapy appointments are really quick, I only fry for about two minutes, as everytime it is increased by about thirty seconds. I hear I'll have a nice tan as I keep going, I guess it's a good thing... I have been more red than anything so it will be a change.

With the prednisone still very high, I think that my face is starting to get a little bigger again, not too much cause it wasn't down a lot from before. Another week on the high dose before I see the doctor again, hopefully it will be able to come down after that, but I won't cross my fingers.

I took in a little bit of the Stampede, it's a crazy place... Spend money, smell all the sick greasy food that you want to eat so bad, but you know in your heart that it is wrong, and absolutely disgusting... And see the sights. Mom and I went to Tim McGraw, it was such an awesome concert, really rockin' so that was a highlight. Cara and shane are here for a couple weeks to keep us company and add a few more bodies to the household. Guitar playing around, working on some songs, getting better I think, we'll see.

Justin:)

Strange Disease...Wee Eww Wee Eww

2005-07-11T18:59:00.000-07:00

As luck would have it. I mean what luck, there is no such thing. Inevitable circumstances that happen because of another cause maybe not always known, but nonetheless occurs. I have a new disease. The unfavorable, but right now non-threatening as it is spooked up to be prior to transplant. Graft vs. Host Disease. Don't get me wrong, this is serious, I have developed a rash like state over much of my skin, like a sun burn my skin turned to a more reddish shade, has been itchy, and now is peeling like crazy. Flaking like I have severe dandruff... Something Head and Shoulders isn't going to cure. Chronic GVHD has varying degrees of severity, skin problems are the most common (20-60% of allogenic marrow transplant recipients "contract" the disease), but liver function, gastro-intestinal, and lung problems can also erupt. So far, I am lucky, and a hypocrite for using luck as an excuse.

Plans to come home this past weekend was over turned by this new discovery of another annoying set back and delay. Along with disappointment came more drugs, maybe the tapering began to soon and thus caused my body to become attacked by my new cells, whatever the reason for it too begin just after the one hundred day mark. Prednisone down to 30mg, was again brought to a skyscraping 100mg. After almost a week of this new dose my sleeping patterns have begun to go backward, waking up numerous times during the night again. Of course this is all to prevent things from getting worse, and I realize that, but it just seems one step forward is just going to make me take another three backward. Does it end, eventually, but it's slow. I will be seeing a dermatologist to get prepared for starting light therapy, a procedure that is supposed to help my skin by treating the crazy blood cells that are attacking my skin. Hopefully with this treatment I will again be able to go down on my dose of prednisone and maybe that will be all for problems.

I have been able to start strumming a few song on the guitar a little bit. Some actually sound like songs, it's amazing. Run-walking most everyday, my strength is coming, unfortunately the doctor said that I should probably wait for marathons though, December is a little too soon... I didn't want to go to Hawaii anyways. But that's all for now, maybe I'll take less than a week to get here and type it out again. Until then...

Justin:)

Day 101

2005-06-27T23:06:00.000-07:00

Day 101
One Hundred days have come and gone. Just over three months ago I was laying in a hospital bed with chemicals running through my veins, curing, or poisoning me as well the remaining Leukemia inside. The last hundred days have definitely not been all fun and games, but they haven't been the worst either. Immediately after transplant was the hardest, I was left feeling very weak, and having a body that I did not really recognize. My ability to taste had been reduced significantly, my body was not used to food and I had a little trouble in the digestion area. Also the lack of communication, I kind of cut of ties to the outside world for a while, as I didn't feel well enough to express myself to others. It has been a long few months, and it seems like I could have accomplished more in the (to me) pathetic existence I have endured here, not doing much. More importantly though, during my "uselessness" one thing for sure has come forth, I have overcome one obstacle presented to me in November of 2004, Leukemia, even now it seems very peculiar and strange to say that I have Leukemia, or did rather. It's like an out of body experience, although you experience all the horrible effects, the vomiting, headaches, diarrhea, mouth sores, and all the rest of the torture that comes along, it still seems unreal.

Now for immune building, that is really the only thing holding me back now. Having an immune system is great but only if it works properly. In my case I am still taking drugs that inhibit the growth or maturity of my new disease fighting system. The prednisone steroid that I am taking is slowly being tapered, and I cannot just stop taking it because of some adverse effects that can become of that. For instance, I could become psychotic from the withdrawal, and start flinging chairs and be very irritable for the slightest reason (I have discussed rage issues with another transplant patient.) The main reason I am on this drug is to prevent Graft vs. Host disease, where the new immune system could start attacking my body:(Right now I think I am experiencing a little bit of this in my mouth, it is feeling a bit peely and has a different texture- I have a steroid mouth rinse for this, and no it won't give me built tongue muscles.) Another reason for the tapering is that if I were to experience harsher GVH symptoms it is likely I would have to go back to a higher dose again and begin the tapering process all over again. Right now I am at 30 mg per day, if I keep moving along eliminating 5 mg per week, with a final dose of 2.5 mg, it is likely I will be off the "roids" in about seven weeks. Maybe this will mark the increase of an fighter and better protection inside me.

The cold, or whatever this thing is, is still with me. The chest feels fine, I just have to cough every once in a while to loosen up the crap, it isn't really a colour anymore, maybe a tinge of yellow, but not as it was before. My sinuses still get a little plugged up at times, but nothing a few forceful blows can't clear up. The only other thing is that my head has been bothering me. You know the feeling when you feel like you are on the edge of a headache, but it doesn't bother you enough to pop a Tylenol. We'll see where it goes.

I went for a jog tonight, the mosquitoes were crazy. After all the rain it seems that it was enough to spark some serious hatching in the mosquito egg department...Dude. I didn't get eaten alive, I was able to outrun them for the most part. The jogging felt good, I haven't done any(as much as tonight) for a long time, and you can tell...You can feel the burn in your legs, the firming of your butt, the bouncing of the fat in your upper torso... What a rush. I have been thinking fairly serious lately about joining the Team in Training program if I am able. It is a training program that gets you trained for a marathon of your choice, mine being Honolulu in December, and you have to fundraise so much, 75% of your money raised going towards research for Leukemia and other blood disorders, the other 25% going towards your training and getting to the marathon. This would be a tremendous challenge, but also put me back inline, maybe even better shape that what I was before all this happened. I feel this would be such a good cause and a very positive thing if I am able to do it, which I really hope I am.

Justin:)

Line Removal Day

2005-06-22T20:23:00.000-07:00

I am still a bit sick, it hasn't really amounted to much, some congestion in my chest, I am bringing up a little crap when I get coughing, and I am more stuffy and nasally. Other than that I am fairly fine in the cold department. I had a sins X-ray today to make sure nothing's up there.

Saturday was a bit of a drag, it rained most of the day, so I stayed inside and didn't really do much. Sunday was an improvement, it was a lot nicer. We went for a bike ride around the very muddy reservoir. We actually went through a few blockades, the paths were supposed to be blocked off, in some places the water was flowing over the them, nothing raging, but enough to be a public hazard I guess. I got my feet wet on the bike crossing through one overpassing stream. The rest of the weekend was fairly relaxing. The city was put on water restrictions because of the muddying of the reservoir, so this week we have been trying to do our best with conserving water, short showers and such.

Todays doctor appointment was rather long, we were there until 4:00. Waiting for my blood results was one of the delays, as well as waiting for the sinus X-ray. So I read my book in the waiting room until things happened. My blood results were good. I think my platelets are on the rebound now, they climbed six points to 66. I was able to get my Central Catheter taken out, a process I was worried about, but it turned out to be not so bad. The pokes of the needle hurt the most, and it only tok a few tugs to get the line out from my chest. I laid there on the bed for fifteen minutes while the doctor preformed the "surgery", and another fifteen with a weight on my chest to help prevent bleeding. The side of my chest feels a little weird right now, but it should be fine, as long as I am not bleeding internally... Don't worry, arteries have muscular walls, so it should have closed right up after the line was yanked.

Justin:)

LeukemiaBeGone...Positive Negative Results of a Bone Marrow Biopsy

2005-06-17T21:30:00.000-07:00

Disease free. To have no sign of Leukemia left within my bone, a very good sign of a nightmare slowly fading away into the past. Those were the results of my Bone Marrow Biopsy from last Wednesday. To tell the truth I wasn't really worried, it was looking fairly positive, but no doubt to have confirmation is really reassuring. Really I have probably been Leukemia free since I was zapped with radiation and the half a dozen chemical that were pumped through me before transplant, but now that my marrow cells have had a chance to grow again the test was conducted to tell for sure. So a weight has been lifted off my weaklink shoulders and those of everyone who has been thinking about me.

However, the effects of transplant have really been more of the issue, of course Leukemia is the reason I am in this mess. Because I have a new immune system growing inside me the caution I have to exercise will still keep me under strict conformity. Public outing bans, no swimming pools, crowd avoidance, construction zone clearance, staying away from most animals, out of the dirt, ect... So limits to what I can do will still be in effect for a while, without an immune system of total functioning capabilities I am still at high risk for infections that to a normal person could easily shake. Unfortunately, leukemia gone or not, I am not there yet. It may be six months, it could be a few years before my immunity is substantiated enough to sustain my body and health against all the bugs out there, I'll get there eventually, sooner rather than later.

My blood results for Wednesday proved to be a little concerning. My liver function was a little high and I was told to return to do a follow up blood test today to see what was up. Wednesday my platelets had surprisingly stopped at 57, the same level as last week(maybe the end of a slow dip.) It was proved so as the level was at 60 today, so maybe things are looking up in that regard. I need all the platelets I can get if I continue to get nose bleeds like that of the one on Wednesday morning. It bled for a half an hour and led me to become a little light headed, fairly certain to happen with a nose bleed that long. My hemoglobin slipped a little too, but was up a point today. Luckily my liver function was down to a more suitable level, if it were to be up it may have caused my medications to be changed or something, so we remain the same.

Unfortunately this week I think I have managed to get sick. A cold of some sort. I have developed a cough over the past few days, with a little congestion in my chest, and a bit of a snotty nose. Hopefully nothing more serious erupts from it, but without strong immune fighters in me, it may take a while to get over. Lets hope for the best. I'll shake this in no time. Really, I think I have been very lucky to last this long without catching something, living with six other people, two of which are my cousins going to school, exposed to hundreds of other germ infested snotty nosed kids playing in dirt. I have been careful and washed my hands millions of times, but I guess some thing are just unavoidable. Lets just say it's the first test for my new blood, and not to say I am equipped with a few antibiotics to help me along.

It's raining, and supposed to for the whole weekend which sucks cause I'll be cramped up inside and won't be able to get out for my physical activity, maybe yoga inside... Maybe I'll try writing a song on my guitar as I watch Calgary float away.

Justin:)

Eighty-Seventh Day of New Blood

2005-06-13T22:15:00.000-07:00

The stab in the hip went well. Although while performing the operation, in my anxiousness, tight grip on the bed frame and heavy sweating, I swear the doctor gave out some evil laughs. Not so much as evil, but 'you're not going anywhere' laughs. It was painful, but nothing a few slow, deep breaths couldn't solve, if I wasn't to pass out. The worst part is right when he sticks the fairly large biopsy needle and has to put lots of pressure on it to get through the bone. Because of the pain I couldn't really tell if it made noise, or just the quivering inside my bones that made the sound that vibrates through your body. Anyway, hopefully that will be my last bone marrow biopsy, and all that I am left with is a small scab where the needle went in, oh and of course the centimeter of hip that is now in a test tube somewhere, but that hole will fill in in a little over a month.

I should have my results by Wednesday when I head back to the Bone Marrow Clinic. Apparently we could be looking at line removal. My central catheter has been attached to me since January. It has been a long time. I was told that the procedure is something to the effect of a lawn mower being started without the recoil, I guess that would be the burning sensation afterward. First I am given local anesthetic where the anchor is located, just below the collar bone. They need to make an incision here because essentially my skin will have grown around this anchor. Once they have the anchor detached the tube will be in two pieces. The one inside me (leading to a main artery) will be pulled, fast to minimize bleeding, the other should just slip out. All I should be left with are a couple of stitches, and maybe a little tenderness, but I am planning on it not being quite as bad as when it was put in.

So the weather in Calgary has been a little depressing, not that it is depressing me, but rain... It has been raining a lot here and it has prevented me from getting outside and doing my physical activities as much as I would like and should. So I am getting fat. I swear my breasts have enlarged a bit, and since I have been able to job slightly, they are more sensitive to the bouncing movement. To much information I know, but that's a warning to stay active and not have extra baggage, or to wear a sports bra.Since my hair is growing everywhere again I am also experiencing itchiness, and is that annoying as well, but soon I'll just be hairy again and itchiness will stop?

From my last doctor visit the stats hadn't changed much, but my hemoglobin was down still at 122 (137 normal) and platelets had dropped slightly to 57. I guess white blood cells went down too, but they remain in normal range: 6.2. With these results, it should tell if anything is happening that shouldn't, but these dips seem to be normal while engraftment takes place. So we will see Wednesday.

Justin:)

Biopsy Day 82...It's Day 76...AHHH

2005-06-02T16:22:00.000-07:00

Ok, so I have new information. I was thinking that after the 100 day mark, which is June 26 I would get my bone marrow biopsy, which will show the status of the new marrow in my bones. Guess what... It will be next Wednesday; the twelfth week post transplant. I was a little surprised. Realistically though, being sooner, it shows I am in pretty good shape I guess, and I will know something more concrete a little sooner. The good news I hope! They asked if I wanted sedation...Nah, I am tough. I have done this what... Four times already without it, so why wimp out now. They still use the localization freezing (I'm not that tough!)

I think going to the hospital wears me out more than going for an hour long walk or bike ride. Sitting there must be the brain drain because I feel really tired after sitting there waiting for the doctor check-up, and he is always late, or my blood results don't get there for a while. But it's not like I have a lot of other thing to do, and it's only once a week. So it's bearable. My stats are doing ok. My platelets are still lower than they should be at 59, and my hemoglobin went below "normal level" this we too 125 (it should be above 136) but these are just numbers. White blood cells were at 5.6. I was put on a daily folic acid pill, it is too help with blood formation, so maybe that will increase my blood making.

I took a nap at 6 yesterday, odd time for a nap, and slept 'til 7:30, I guess I needed it. But I haven't been staying asleep at night the best so I use what I can get. Right now I feel like passing out(falling asleep...So don't worry) I haven't done much today except for bake a cake and cookies... I drove to the store to get my prescription(shhh.... I am not supposed to drive with the prednisone, but I don't really find I have have the side effects that ward off driving...Just don't tell the doctor!) Then I came back, had some lunch... Iced the cake....Been on the comp ever since. I really need to practice guitar today still too. After my nap!

Justin:)

2005-05-29T12:19:00.000-07:00

My Bread...it even resembles the cookbook picture!!

Happy Sunday

2005-05-29T01:15:00.000-07:00

Happy Sunday. It is a really nice day outside today. Probably is in the mid-twenties and rising. It has been a pretty good weekend. Yesterday I woke up early, like 5:45. It kind of sucked, cause I don't really have a reason to be up that early, and I can't really get back to sleep once I wake up. I am one of those people who just gets up and stays up, unless I am really tired, but that doesn't sem to be the case these mornings. I guess I am adjusting to six or seven hours of sleep a night. Where as eight or nine would be more preferable while I am in the "healing" process.

It was a leisurely day, I ate some breakfast, sat on the computer, lazed around. Had lunch, soup that my Nan made with my guidance... Even though she is a way better cook, I instructed her on the method. It was good, of course I ate too much, but my digestion is working well, so nothing I can't handle. After Lunch I went for a bike ride with my "extended family" around the reservoir. It took us about an hour and a half to make the round, a good ride, it was a little more slow because we had my cousins who aren't quite as fast as me yet. It was an enjoyable ride.

I sat outside on the deck trying to teach Nan how to play chess, an almost impossible task, but she started to figure it out. I still won. Ate some watermelon, relaxed outside some more. Don't my days seem very slack?! Had supper a little later, I love Salmon! Played some cribbage with my grandma, I won again. I tried to watch a movie before going to bed, but started to fall asleep so I ended up just going to bed.

Today I woke up at 5:15. I kind of new I was going to, I had plan to do some baking this morning, just for something to do. Bake so I can eat it. I made some blue berry scones, chocolate chip cookie and some more of my famous bread. Whipped up a fruit salad and pigged out on that and scones. I am still full, yet I want to eat. I guess that is something I may have a problem with, eating when I don't need to or because I am bored.

I will probably end up practicing guitar for a bit today, playing some cards, and going for a bike ride, I better go outside and enjoy the sun, it might be rainy this week. If it is rainy that just means more time inside, time for baking some more goodies. Why am I so obsessed with food?!

Justin:)

Justin...Write...Journal

2005-05-25T23:35:00.000-07:00

Today... What day is it now, I keep losing track. Oh right, jour numero soixante-huit(day 68). It was a fairly good day, except I got tired, but I guess that is what you get when you stay up until about one A.M. reading a book. The book I read... I have like ten pages left: Lance Armstrong, "Every Second Counts". It has such a positive vibe, you get to learn experiences of other Cancer survivors, learn about bike riding, learn about life perspective through the eyes of someone who has been through the twists and turns, it's hard to put it down. I don't know why I sopped reading it back in February or whenever it was.

Back to the morning, my problem now is being able to sleep in, I wish I had more of that skill right now, but it's hard when it's light outside, even though my room is completely dark, I just wake up. So today I decided to get up when I woke up and went for a twenty minute walk. That seemed really ambitious, but I did it. The sun was shining, birds singing, I just wish I could get more sleep. I got back made some muffins... Yeah, yeah Martha, shut up!! I made bread on the weekend too, but yeah.

Bone Marrow Clinic at 12:15 this morning/afternoon. Basically a routine now, as long as nothing, cold/infection/other problems start to erupt all of a sudden, it should be fairly smooth. Jeje lowered the prednisone 10Mg so slowly we'll be tapering the steroids. Maybe my face, that seems to me very round now, will start to taper as well. I examined my grade nine baby face, almost identical, but I have a little more rounding right at the moment. I am definitely not a long face, cake face now for the time being. I weighed in today at 87.4 kg, about 192 lbs. up from last week... I am not quite sure how accurate the scale reading is, but it's fairly close to right. I am still at least 20 lbs. lighter than I was before all of this. All my blood counts were good, but again my platelets dropped a tiny bit, 64 units. Nothing to be much concerned about still.

Finally, I got to see my Katimavik group again, probably one of the last times I'll see them all again, it's sad to see them all go, but someday I am sure to see some of them again, and now I have a few friends right across the country. Living with them for two months was an experience I will never forget, it wasn't always pleasant, but it was something I never will regret doing. It seems things don't change much, cause I could go right back and continue living in the house, I felt comfortable with my group, and got along with everyone so well. I could possibly participate again in the program, but I might be disappointed with a new group, it being so different. Yet it could be better, I don't think I'll ever know.

Mom leaves tomorrow, Nan is here to look after me. I don't really need any looking after I don't think, but she will be my company during the day. It will be nice for mom to get a break, well not really break, but change of scenery and pace. See my sister off as she graduates. I wish I could be there, but a 10 hour drive to the hospital if something were to come up is not worth the risk. So I stay in Calgary, close to the comfort of the hospital. Maybe by July I'll be home depending on the space between check-ups and my status after the hundred days. I will be spending time with Nan in the meantime, working on that guitar stuff, maybe finding another book to read, and continuing this journey, maybe I'll take the dog on walks too.

Justin:)

2005-05-25T22:30:00.000-07:00

My KrazyKatimavik Group, and me the Animal

May Long Weekend...Day 64 Post-Transplant

2005-05-21T17:05:00.000-07:00

Well it's the craziest weakend of the year, everyone out and about trying to get away from "it all". I have been away from it all for sometime so the boredom I am faced with does not phase me to bad. Me and my mom, who is starting to go crazy as well, with the lack of things she is able to do, as we are both left here, secluded from our family and friends. Her from her children and husband and millions of things she could be doing at home. We are in Calgary, a huge city, millions of things to do, but the problem with that is millions of others are doing the same thing, and I am just not in a state of health to be exposed to every little people germ out there. So we don't risk it too much and keep to the wide open spaces of the park that is near by. We go on hour long walks with the family pet, that has basically become our duty of walking everyday. This week as a little more exciting, we went to the Museum of Regiments, it was interesting to learn a little more about the war, but it was a museum... Not the most exciting place to venture off to, but it gets you out of the house. Later we went to the theatre, normally that would be a death trap, but this one is not very busy. We watched Fever Pitch, it was funny, there were maybe eleven people watching.

I have been getting into the routine of doing a few good sessions of stretching during our walks which I think is helping my strength, but if you don't stay with it you get sore. The first few days after I am sore anyway, but I can really tell my muscles have become week. The problem with stretching, is the prednisone is affecting my legs muscles I think, and a few mornings this week I have woke up with those hurting leg cramps in my lower calf. My foot muscles up to my calf just cramp up, and it takes a few rotations or sudden twitches to relieve the pain. I hate it, but at least it doesn't last very long.

My mom is leaving on Thursday to go back home for few weeks, it's been about six months, so I guess I could let her go for a few days. I will be fine, even if I do have to be without my mommy for a while. I left home in September, so it will be nine months for me, but I wasn't even supposed to be home until June 8th once my Katimavik program ended. So I guess I wouldn't be home anyway, but the fact that everything changed, I might as well be there.

June 26th, the 100th day. Only 36 days away. Un-officially it marks a good outcome for transplant, the first part of it anyways. Within the first 100 days, you are most at risk of developing some form of Acute Graft Vs. Host Disease. I have/had some form of it, a few rashes on my skin, legs and arms mostly, but nothing really severe, the patches are still kind of there, but don't really bother me, just look a little scaly. My progress has been fairly good, a few little quirks here and there, but nothing too serious. My cyclosporine has been cut off, and that is the drug used to prevent rejection of the new cells, so as long as I don't start to all of a sudden reject the new blood, it should now be allowed to slowly begin to rebuild my new immune system, giving me more protection in the fight against the evil viruses, bacteria, protozoa and fungi. Still I am left with an immunity like that of a baby. But babies roll around on the floor and such, putting everything in their mouth, maybe that is the key to a strong immunity... I don't think I'll be trying that though.

Justin:)

2005-05-21T16:06:00.000-07:00

Who is That Freak??!!

Howdy

2005-05-16T17:13:00.000-07:00

Another week gone by, well I guess not since it isn't quite Wednesday, only Monday. The days just are going to quickly. Sure... Maybe if I wrote the days away they would go faster, but I don't know. I think that it would be a good idea for me to start writing short stories or something to that effect, maybe poetry. I'll become a romantic and write my love, my desperations, my fears, dreams, hopes, and whatever other nonsense you can think of down. These are just things to move my mind. I may become stupid before all of this is over, it just seems I am stuck. Not so much of a rut, just lost to what I should focus on. Guitar is something, and it does keep me occupied, maybe just not quite as much as I would like. I could start a book, but which book. Online courses, I am interested, but maybe lack the enthusiasm, and text book reading doesn't sound very fun, but it would keep me from getting stupid, or numb brained. The go to school on your computer idea, I think I will take sometime in the future, maybe fall, once things settle with where my disease status rests, and I can actually set a plan to be away from doctor check-ups for a more elongated period in time, and when I am more enthusiastic about learning.

Health status for the past few days has been fairly good. Friday I went to the hospital, Bone Marrow Clinic, had my blood drawn. Waited for the results. My platelets had dropped a few more points from Wednesday, 71 to 67, not a real significant amount, but still, we are in a bit of a slump. Dr. Jeje was not in (he is on a deserved break, he is a very busy man) so the nurse consulted with another doctor, who decided to take me right off my cyclosporine, and see if by tomorrow that has any effect on the dropping. They also put me back on a lower dose of Fluconazole, which is an antifungal drug that may have been affecting my liver before, but my liver function was stable. So another pill but I am used to them now I think. I can do all thirteen in one shot. So tomorrow will be a test to see where my counts are at.

One thing I was no impressed with; Saturday I was awakened by my knee. It was a bad ache, that turned to almost-make-you-want-to-cry pain, right in the joint, no matter what I did it kept hurting. I don't know, but it could be a side effect of the prednisone steroid, but it is weird cause it the last three Saturdays, both knees did it the first day, then it was the right knee last week, and this week the left. Knee pain is something I don't want or need at the moment.

Peace out for now!! Justin:)

Some More Reading Material

2005-05-11T21:38:00.000-07:00

I have sat down numerous times this week to share the things that have been going on, but when I start to type, the words just seem to end. Still nothing really exciting has happened with me, I seem to be more tired this week, maybe because my prednisone was upped and my cyclosporine was decreased, I don't know. Maybe it's just a change in my body. It's really hard to say at this point, nothing really feels the same day to day. My feet feel "dead" at times, the nerves I am sure were damaged from the last round of chemo, and they just don't feel right, and that goes along with my legs, my muscles have taken a hit. Walking up the stairs just isn't the same, but that is a side effect of prednisone.... Weakness, just something you have to deal with day to day, if you are tired you rest, no sense in wearing yourself out so you feel worse the next day. Too bad the sun gets up at 5:30-6:00 now, cause I seem to be awake when it's light outside, but I do usually manage to get back to sleep. My shoulders have been sore, I haven't really been doing much to make my muscles sore, but another drug side effect is most likely.

I made bread, muffins and brownies the other day, I almost killed myself trying to get it all done. The oven warmed up the house, I was wearing a sweat shirt, kind of forgot to drink or eat anything, and I was kneading dough. I had a nap afterward, but was tuckered out. Later all of my hard work went to feeding a large crew of family members who showed up. The bread was a hit anyways. The brownies, and muffins were practically polished off by the next day too. That's the shame in baking, it never lasts to long, unless it is really bad. I guess I have some skills, and something I can do when I am bored, except people around might start getting fat.

Today I was at the hospital, a standard check up, had 120 mL of blood drained from my body. It was the day to draw blood for this allergy study I am involved with, to see if allergies are transferred form the donor to recipient after transplant. So far I don't know if my donor had any allergies so I asked the nurse to maybe check into it for me, that way maybe I could know if any new allergies start happening with me. I could run my own personal study. Hopefully I don't get a peanut allergy, cause I don't think I could live with out peanut butter. Along with the allergy blood, all the standard other tests: chemistry, cyclo levels, blood levels, and the numerous other ones they check for. My platelets slipped down a little from last Wednesday(90-71), so I will be back on Friday to check that one again. But my hemoglobin was at a stable 137, and my white blood cells are at 8.9, 7.2 for my neutrophils. Liver function was stable, so nothing seems to be happening there. The platelets dropping is a little bit of a concern, but is likely just a little dip as the new bone marrow continues to take over. I am becoming maybe a little bit of a hypocondriac, but I make sure my doctor checks any little thing that I notice. I have been having a bit of tenderness in my breast area, am I growing boobs, I don't know, but whenever you have tenderness you sometimes wonder. I know during puberty I had swollen breasts, and they were sensitive and hurt. Damn hormones messing with a boys brain. Anyway the ultra sound and chest X-ray from last week didn't show any abnormalities, so I guess I will just relax about it.

Playing guitar has been good, I think my chords might be getting a little faster, and I am getting them in my mind, as I learn more. My fingers are a little shaky still, so at times its a little difficult to get them on the right string, but the majority of the time I am smooth. Still I don't really know whole song but hopefully soon that will change. I think I just need a more of a mentor, my lesson is only a half an hour and it isn't much time to just mess around. It gets a little frustrating when you just want to pick up the guitar and play like a pro, but I guess that's not how it goes. If only it were that easy.

Well a week has gone by, 54 days since transplant, time goes by no matter what, sometimes slower than you want it to. Maybe sometimes faster, depending on your mood, what you are doing, or what you are feeling. I think that when you sleep time should speed, the nice days should last longer, but no matter what you should enjoy all the time you got, no matter how fast or slow it's going.
Justin:)

Here I am...

2005-05-04T18:41:00.000-07:00

So this is what it feels to be nineteen. I guess this is a special circumstance, something you never would have thought could be possible at such a young age. Lots of people get sick, you just never know if it's going to be you. I am dealing. My Birthday went alright, as about exciting as every other day since the start of this whole thing. I had an cry. I guess it's good to cry every once in awhile, even if it is your birthday, relieve some tightly packed emotions and stress. At least the big turkey feast was good, and I ate double of the black forest cake... It was good.

The weekend carried on, in a bit of a frenzy however, it was kind of busy having a fuller than normal full house here in Calgary. I kind of felt overwhelmed, and this house isn't so big that you can just become lost, and get away from everyone if you need to.

I have felt a little lonely lately. Mostly my fault, I never pick up the phone to talk to anyone. I just don't like talking on it. It seems to be even harder when you have little to talk about, I guess I could always be the listener, find out what is happening with everyone else. I think I get tired of the question: "How are you feeling?" Standard answer: " Good/OK I guess." Really, I don't know how to answer that. I don't feel to bad, most of the time, but still it's not the way I would prefer to feel. So I guess I just keep it simple to avoid the: "Well, I have stomach cramps, gas, tingly feet, ect..." Maybe people get tired hearing about the complaints of this Bone Marrow Transplant patient. And I'm rambling...

So I have been baking, I got a new cook book for my birthday: "Essentials of Baking". It is a huge cook book filled with exotic breads, pastries, cookies, and all those things that a steady diet of would enlarge you steadily. So I decided to try one recipe everyday. So far I have made these cheddar, chive muffins. They were ok. The Honey Whole Wheat bread would have been better if it had cooked fully, but the kneader and baker failed; undercooked. The cookies were a hit and didn't last the weekend so I made more yesterday, along with the most excellent pizza dough. It's a shame that breads and cookies aren't the best thing for you because I think if they were I would just go non-stop with pies, and all those things that taste so good. I am one of those people who loves to make things, but hate to see it get eaten, unless it is by me. Eating is a past time for me, one of the things I can still do and enjoy now that my taste skills have more or less come back since the chemo period.

Guitar is still going, been practicing quite a bit, not a lot of progress, but it is something that will take time to master. I have been trying to get the first part of 'Sweet Home Alabama' down, it's slow, but it sounds like its supposed to. Along with the chromatic finger exercise, and trying to get my chords down, and learn the major and minor scales, I have lots to practice.

My bladder was acting up last week, but this week it seems to be better, but I am still getting up a lot at night to go to the bathroom. It is interrupting my sleep, and I am feeling more tired in the afternoons, so I think I need to start taking more naps during the day to sustain my strength.

I wanna see who is out there still, drop me a line sometime.

Justin:) Thanks for all the Birthday Greetings By the Way.

Happy Birthday To Me

2005-04-28T12:00:00.000-07:00

At about this time nineteen years ago, my Mom was in the middle labour with her first baby, me. Ten something pounds, yes it was I who mutilated her stomach, those stretch marks, and scars from the cesarean. Thanks mom for everything you have went through for me! I guess I am still her baby, she still does a lot for me.

Man, nineteen years, how does time fly so fast?! One last year as a teenager, and then twenty. It seems so old. Even though this year has seen my life being tipped upside down, or go in reverse for a while, things are still moving. One year is not a lot if you really look at it, I am sure I have spent over five years of my life eating if you add it all up.

Gas... I am not a good person to be around for the nose. My stomach has been acting up, well basically since I got out of the hospital. Could be the drugs, and the combination of me being somewhat of a pig when I eat, and/or my digestion getting back on track after the intense chemo. But do I stink. At least its not painful gas, just that kind that rumbles in your stomach until it finds it way out. But bloating is not so fun regardless if I doesn't "hurt". Something that does hurt.... Bladder pain, the kind when urinating. I did a urine sample today at the hospital, its a little concerning to me, because it hurts. The doctor will let me know if it is infection, hopefully not, but who knows, I am in good hands. Ditropan will hopefully help with the flow,and pain. But isn't that a great Birthday present? I always wanted that!

Anyway, big celebration tomorrow! Not extremely excited, but its my Birthday, so I can demand and do what ever I want...As long as it does not involve public places, dirt, dust, sawdust, mould, increased sun exposure, swimming...blah blah blah. It will be a regular day, but my Birthday as well, but they have never been a big deal to me anyways. Everyday is just another day, another crossing of the sun across that big blue sky...

Justin:)

I did get a good present yesterday, a short little note from my donor, anonymous of course, but it was something I wasn't really expecting, but great to know the person is out there. Somewhere, if only I could crack the code....hmmm

Thirty-seven Days Post

2005-04-24T17:54:00.000-07:00

It seems to be a vanishing act with me, but really, I haven't gone anywhere. Motivation to sit here and type about my slow moving life just has been a little more difficult than it was before. It's just that my days are very limited with excitement, it doesn't seem necessary to explain. It has been twenty days since the hospital stay, and about day thirty-seven post transplant. No serious complications have come up, but I have experienced some irregular bowel symptoms which have not been the most pleasant, I think they are subsiding. But a new schedule has come about during the night, the frequency or those bathroom trips get me up three to four times a night. It would help if I didn't have to drink so much fluid with my pills, but it helps to get the excess out of my system, making it easier on my liver. The last few blood tests have shown higher levels of certain substances in my liver(naturally there, but a little higher than is necessary) so the fluid intake is important. The first hundred days after transplant are most crucial in that acute GVHD can occur, the skin, GI tract, liver, kidneys, and eyes can become damaged, or affected. Of course the drugs I am on are meant to counteract these effects. So far nothing has surfaced. Unfortunately, I do not feel completely normal(whatever that is), it is possibly the drugs, but anything is possible, you just got to hope for the best. So my situation is favorable for me right now, of course things can change very suddenly, but I will say they won't!

Strumming my guitar has a soothing quality, I'm getting a little better, but if you were to see/hear, maybe not so much. I have lessons every Friday night, so it's something to keep me somewhat occupied. But with the coming of nice weather it will be really hard to be not outside, running around, rolling around on the lawn. My skin is more sensitive to the sun now, so 30 SPF will be my closest friend, chemo and the drugs is what does it to you... Everyone should be using 30 SPF now anyway, skin Cancer is on the rise! But staying away from all those dreaded microbes and bacteria that live in the ground, tough, but I guess it will have to be do-able. I will have to fine a plastic tree, or an umbrella will work, sit on an antibacterial surface, under my fluorescent light and strum my guitar, maybe I'll be good by the time the microbes are frozen again this winter.

I go back to the doctor tomorrow, he'll check me over, and hopefully my blood test will be good, and nothing will come up. Again, I'll be back on Wednesday if they don't need me again Tuesday. I don't enjoy going to see the doctor, but at least I know that they are there for me to help me out if I get into trouble. That will be hard for when the time comes to go home, the security of the specialists being ten minutes away is not really an option. But when the time comes we will know what can be done, and by then I will be so much better, it likely will not even be anything of a concern, still it stays, take it one day, one step at a time!

Justin:)

2005-04-24T17:39:00.000-07:00

The Sibs and Cousin, and Very Sickly Looking Kid

2005-04-24T17:36:00.000-07:00

New Blood Going In

2005-04-24T17:28:00.000-07:00

Having a fever, Giving Myself Morphine, and Sucking out the Saliva

Back in Slow Moving Action

2005-04-09T16:50:00.000-07:00

Inhale.... Hold it... And Breath. Ok, I am back, sorry to keep you waiting in all this anticipation to see if I would ever return. I guess I like to think no news is good news, but that can have serious repricusions on peoples nerves, just not knowing for sure. But he I am. Though I am still in a bit of a limbo state, that transplant has taken effect in my body, and is in the process of fixing me up. As far as anyone can tell right now, it's a day to day situation, but so far a week out of my hospital room has been good, with no serious problems erupting. My state, although improving everyday, is very much on the low side of things. My muscles are weak, I am usually tired, my eyes are droopy, my feet are tingly, my skin itches in places, my head feels out of it, my tongue can hardly taste, the pills, I sound like it's bad, but really thay are just the little annoyances that should get over with sometime soon.

My mind still wanders, I find that I have no path right now, besides the things that I have to do, wake up, exercise, eat, sleep. Hardly anything else is accomplished, but it's my duty for now. Slowly but surely things will work up to normal, if there is a normal after all this. Right now it seems far away.

This is a depressing entry, but I am on the slow upswing, just feeling distant and maybe a little lost from reality. I am not in a daze, and I know what is going on. But this wonderful life is confusing and mysterious and it's this waiting game that seems so drawn out.

Justin:), I won't be so long with the next post, but if I am it's just cause computers are lacking in interest right now.

Cinqo dies de ma Transplanto(My version of Spanish)

2005-03-23T15:33:00.000-08:00

This is March 23 2005. That means it is five days since I was infused with someone elses Stem Cells. It will still be a while before anything spectactular comes, I have to wait for the cells to get into my bones and start making my new blood. So far all my counts have dropped, as normal, white blood- 0.2, red -94, platelets- 113. Likely my platelets will drop almost to zero before they will give me any transfusions, as it would mean filling me, again, of someonelse's cells and that may just confuse my already slightly dazed body or blood stream.

Well the few days past I havn't been eating a whole lot, which is nothing compared to my normal eating habits. I just keep getting sick, like I said before, I hate getting sick. So slowly I am waisting away, but I think my eating is starting to pick up again. But now I have to worry about my mouths sores I seem to be getting, they aren't too sore yet, but they are becoming that way. Unfortunately the mouth sores won't disappear until my blood counts come up which could take up to two weeks before engraftment occurs in my bones.

My doctor told me I am on the road to Picadilly today, I am not really sure what that means, but he is a funny African doctor, so he must have some strange saying but he is a good doctor.

So whatever road I am on, its definatley not over yet, but one day at I time, I will get there!
Justin:)

Transplant...check

2005-03-19T13:45:00.000-08:00

Well you could say I am stubborn, or just crazy...Of course both are probably true, but I could not help getting out of bed, even with a slight fever to check for my comments and maybe check in with everyone again. I have to make this short cause I am not feeling the greatest, but my transplant is past, it happened last night at around 7:30. It went good, but I happened to get a fever after whish has kind of lasted through this day. My room is now decorated with 1000 origami cranes, something for me to wish on and brighten up my room. So with transplant behind, now it is the time to wait for engraftment of the new cells, as the y work their way oward my bone cavities to begin producing my "overseas" blood. It will be at least a week, and we will see how long it takes for me to feel well enough to write a more long blog!! Thankyou everyone for rooting for me, it won't be long!!!
Justin:)

Goes On and On....

2005-03-16T11:18:00.000-08:00

See...What did I tell you Blogging is more fun when you get comments!! Looks like some people don't have it down quite yet, but some are even more entusiastic about it and write double.

Sitting here at the computer station of Unit 57, my chemo is dripping into my veins, it's the last day of this stage which is good. Except for the fact that one more drug is being added to the pile, I am feeling realatively well and I did puke this morning...All over the kitchen floor too, couldn't quite make it to the bathroom. Man I hae the feeling, but it does seem to help once my stomach is empty, even if I did only have water to that point. It is sort of similar to moring sickness maybe, but don't worry guys, I am not pregnant. It's bound to get worse before it gets better, so I am on the computer, typing while I can. This afternoon I am getting ATG, an immunosuppressant(from a horse or rabbit, I get the rabbit) that will ensure my body takes the new marrow, however it can cause flu like symtoms, fevers, chills, shakes, all around fun stuff.

Tomorrow I will recieve ATG again, and I guess also radiation? I guess I should ask Dr. Jeje. The cells will be delivered by early Saturday morning, so I will probably get my transplant while I sleep, remember it is only like a blood tranfusion so I won't be posting any more cool bone morrow biopsy pictures. The cells will bump around inside of my body rying to finf "home" which is or will be my mostly empty bone cavities (right now filled with dead, or half dead marrow that is being pulverized by the chemo as I speak.) The cells will eventually migrate down and begin to produce blood, and the antibodoes I need to fight infection that I soon will run out of.

So this is the deal, nothing is going to happen but I still need everyone to root for me. This will be a long process still, but no way I am giving up.

Justin:)

Rollin' on a Riva'

2005-03-15T10:10:00.000-08:00

It's like this, second last day of chemotherapy ever!!! I lost the first meal in over a month today, my stomach just wasn't in the right place this morning, and it's the accumulation of chemicals starting to take affect. But I took my Zofran($21.00 a shot from the pharmacy...Craziness) and do not feel nauseated at the moment. Unfortunately, with the fluid that has been pumped through my system 24/7, again, have I started to retain it. I will not, however, balloon up over 40lbs. again. I can be put on another drug to help me urinate the excess fluid of my body. On my nights away from the hospital, I get to carry a small fluid pump and like a forty-pound "man-bag" (it's realy cool) that countains the three litre sac of Salene that will be infused over the night until returning to the hospital.

Back here at the hospital not a lot goes on, I can play on the computers like I am doing now, play my guitar that hasn't seen that much improvement in the last three months that I have had it, but slow and steady. I a had a lesson on Thurday, and my insructor gave me something to work on. I have books to read, "yummy" food to eat, a treadmill to walk on, excercises to do, the odd drug to swallow, or gag down, but really not a whole lot realy goes on.

Right now the hospital's fire alarms are going off, I guess there is a fire six floors down in the basement, but for sure it does not compare to the urgence of a fire bell ringing in a school, that would be really chaotic in a hospital if everyone had to leave the building for a miniscule fire down in the basement.

Bone Marrow/Stem Cell transplant scheduled for this weekend, bone marrow/cancer is being slaughtered by the chemo, this news reporter/patient is done telling his stories.

Justin:)

P.S. Thanks for the comments, keep 'em coming, if you want to.

Chemo....sigh

2005-03-11T23:26:00.000-08:00

Well, as the countdown to chemo begins, I am feeling, I guess ready for it, but at the same time, unsure. There is no way that I will back out of this. I could, but it would be a stupid move. This procedure does present risks, but the risk of not taking this risk is even more risky. The best chance of cure from Leukemia. The feeling is just to get it over with, but the hard part is not knowing what will happen in the getting it over with part. I could breeze through the transplant with no problems at all and be perfectly fine in three months, or I could take a nasty dose of Graft vs. Host Disease, and be plagued with chronic signs of it for years to come. No one said having Leukemia would be easy, and sometimes I just wish it were all a dream. I will get through this, just being moderately well and having to be subjected to substances that are guarateed to have a bearing on my "wellness", make me sick, and all that. It seems stupid that way, but to get the bad stuff out you got to fight... Fight fire with fire... Hopefully I don't get burned.
Justin:)

Weirdness...

2005-03-09T00:17:00.000-08:00

Just sitting here listening to my Country Music....That's right I listen to country music and am not ashamed!! Well I am not just sticking with country but it is my preference, and has been for a while. I sing along with almost every song on the radio, cause I have this weird thing about knowing words to every song that I listen too. Exaggerating of course, I know most songs, and if I listen to one country radio station it can be hours before one comes up that I don't. That's why I am trying to learn the guitar and be a real showoff. One day I will be a country star. I can't believe I just wrote that... I am a freak.

So, this is how it works... Today I go to the hospital for my weekly flush and blood draw, my last one before being tied to the hospital permanently on Friday when I am admitted. During this round of chemo I am allowed to leave and sleep outside of the hospital, but that means getting up early every morning to get back to the hospital. The beds are horrible, and don't fit me very good, so the getting up early may be worth it to have a comfortable sleep. Also depending if I am wreching my guts or not, that will also have some bearing on whether or not I stay or migrate back and forth.

The days are spent watching squirrels run around the yard, Calgary squirrels seem way bigger than at home, and there are a lot around, running on the roads, and in the trees. As long as they aren't rabid the world is safe, otherwise I think squirrel attacks would be very common in this city. Speaking of rodents, because I am a little sh*t, I scared my mom as we were walking in a dark underpass with garbage around, almost pitch black, I yelled "there's a rat " and started running as my mom screamed and jumped around as I laughed. It was funny, had to be there.

But I should wrap this up since it is going nowhere. I want to tell people that even if you do not have a blogger account, you can now post comments without one, as I have modified my site to host anonymous comments. So if you read this you better leave a comment... But you don't have to if you don't want to.

This is a really weird blog, o just disregard the weirdness.

Justin:)

Livestrong!! Don't Give Up!!

2005-03-04T20:36:00.000-08:00

Time winds down, my transplant is getting closer and closer. The date, which seemed far off is only now thirteen days away, is March 18th, but could happen on the 19th depending when the stem cells fly overseas. I may be getting European blood now, maybe I will assume a new accent as well as new new DNA. I won't be abe to contact my donor until a year after my transplant, just policy of the Donor System. The whole process is exciting, but different kinds of excitement, but so much uncertainty involved with all of this, just have to have faith!!

So how do I spend my time while I live outside in the real world....Hmmmm......I don't too many thing that are too thrilling. I went to the Zoo, that's always fun!! Most of the animals were out and it was a relatively nice day, and not crowded(I am not permitted/shouldn't go into crowds while my immunity is suppressed). After the Zoo, a few days after, I went to DQ for a burger, then found out from my Nurse that I am not really supposed to have fast food either.... I am just such a rebel. I have been going for walks with Larken, my new pet, now that I practically live with my Aunty, but it makes me miss Rolli, my retriever. I watch t.v. now and then, when my cousins aren't hogging the remote with their cartoons, Jacob Two-Two, and Sponguebob Squarepants. I try to read a bit, as well as get my sleep. Obviously I don't keep up with my Blog as it's been over ten days.

The past weekend brought some familiar faces from home for a visit. They came along with my dad for the weekend. It was not really eventful, but we had lots of laughs, playing deadly games of spoons and slap jack, and just being together. The worst part of the weekend was having to say good-bye again, it's always the hardest part. My brother and sister were supposed to come here to Calgary this weekend, but unfortunately they got sick and had to stay home, for fear of infecting me with whatever they have, I have to stay as healthy as possible before my transplant. So I was sad, but soon we will be together again, but I haven't seen them since Christmas, my mom too.

The dosage of drugs increased today, I started my Dilantin, which is an anti-seizure medication. That sounds really scary, but it is a preventively. The next chemo drug that I will be subjected to is Busulphan which has the tendencies to cause seizures. Not to worry because that is why I have this new medication, but it nonetheless startling. So I will go over how the next few weeks will look: Next week, until Friday I will be hospital free (besides Wednesday when I get a standard procedure line draw and flush of the CVC line that still protrudes from my chest,) Friday I will be admitted to Unit 57 encore to start my chemo session that will effectively wipe out my marrow thus my immunity system as I know it. The course of chemo will run to the next Friday when I receive two doses of radiation before my suspected Transplant the next day depending on delivery time. The Transplant will take its course of about an hour as it is just a simple transfusion, no pain (unless I react, which is unlikely.) The week prior to chemo should go alright, but about day seven I may have severe mouth sores and trouble eating and may need narcotic pain relief(this is the chemo now destroying my fast growing cells; mucus membranes, hair cells, and the stomach/intestine lining) this is probably one of the worst points, but with open mouth sores, I have a much higher chance of infection. During this period I will be on antibiotics, antifungals, and antivirals, and the these are crutial as I am now no longer with an stable immunity. It will take about two weeks for the new cells to begin to work and until this "graft" kicks in I am sort of left hanging. With my donor being fully matched this should minimize the effects that could occur through GVHD (Graft Versus Host Disease) which has many complications affecting many different parts of the body. Some is wanted to fight the Leukemia, but not a lot is good. This is just an insight to the proposed process in which I will go through, and eventually come through the other end even if it means longer time away.

My thoughts are very optimistic, as I have talked to a few people who have already gone through this thing. Of course you won't ever talk to the people who have passed on in the process of having a transplant, but that is something one just has to accept and refuse everything but life for themselves. Life is the only way for me.

K, I have to mention this:
My Aunty was talking to my cousin's friend Shawn.
"Why do you have that bracelet on your arm?" he points to the Livestrong bracelet on her wrist.
"Well it is in support of my nephew who have Leukemia." she explains
"Leukemia!!!" he cries "I thought he had Necrophelia!!" they pause
"Then what is Necrophelia?" Shawn questions
"Maybe you should ask your mom that one!" She snickers

I thought this was hilarious....Anyways, LIVESTRONG Bracelets, everyone should have one, I wear one so because I am continuing the fad, you should too. I am upping the demand! The support Cancer Research through the Lance Armstrong Foundation for those who don't know and are getting very popular. Get yours soon and Livestrong!!

Justin:)

2005-02-22T21:30:00.000-08:00

Lots of things can happen in a week, well, eleven days if you want to be technical(I have been slacking again on my Blog.) Or nothing can happen. I moved from the hospital to my Great Aunts house for the week. It was a change of scenery, home cooked meals, the way ma used to make. I am thinking(even though the scales had changed), from what it told me I had again gained 10 lbs., not from fluid, thankfully. Of course the weight I gained is pure muscle... I am back to my ripped self. No, I believe my belly stretched just a touch, but my walking is normal now, I am just still really inflexible, and my back is quite tight... I guess I have to start practicing Yoga. I am still doing my physio-stretchy-band-exercises, they seem to be helping. So the past week was filled with a lot of cards ( I was living with my grandma, and her sister...Not a lot to do, but we had fun.) Not to mention, I ate a lot of food!!

I was not totally out of the hospital the whole time. Tuesday I had to get my blood drawn, as well as get a whole bunch of X-rays done, pulmonary function test, and see the dentist. Wednesday I had a delightful Lumbar puncture, and then laid on my back for three hours. But my friend Maureen came and kept me company for a bit, then it was off to my psychologist. She was pretty nice, I didn't feel like I was being analyzed or anything, I was fairly comfortable actually. Luckily I haven't had any major headaches from my lumbar punctures, so that made this time off easier. Thursday I only spoke with the research nurse, and Dr. Jeje, who will be looking after me throughout transplant. Friday I was scanned to find my bone density, and injected with a nuclear agent for my MUGA scan, which takes pictures of my heart beating. Ad that was it for that week.

I have been feeling well, however I have been nauseated every morning and had to take Zofran(twenty bucks a shot). As well I am having more trouble swallowing my pills, and have come to the conclusion that it will be extremely difficult to go back to hospital food. I am almost sick just thinking about it. But we are heading closer to transplant, my donor was changed, but the new one is just as good.

Justin:)

Balloon

2005-02-22T20:18:00.000-08:00

My life has become a hot air balloon,
dropping slowly towards the ground,
dodging trees and power lines.
With short bursts of warm air,
along the horizon I drift,
bobbing unsteadily, up and down.

A day soon I will drift gracefully towards the sun, obstacles behind.

Leavin' for a bit

2005-02-11T20:00:00.000-08:00

Just Droppin' a short line. The lumbar puncture went good today, took a little longer than it should have, but the fluid just wasn't flowin' very good, so I had to be rolled over to get it to come out(with the needle in my back.) I am always a little paranoid that the needle might snap off, but I think that is fairly improbable, but still someting that you can think about when you have tons of needles. I listened to Elton John's Crocodile Rock on the radio as the procedure went on, it was a little distracting, but of course nothing really distracts when a nerve id accidentally hit by the needle. I layed in bed for four hours, I just got up practically, so far so good...No headaches, but my head dos feel not quite right, hopefully it is just from laying down for so long. But I am heading out of the hospital, I am happy, although I will be in the scenery on Tuesday and practically all week, so I am not really leaving. But I will finally get a more relaxing sleep, in a bigger bed. Hasta Pronto Hosptal Room!
Justin:)

2005-02-11T19:05:00.000-08:00

Me, on the operating table, and Louise, the helper nurse!

2005-02-11T19:04:00.000-08:00

Getting the fuid out, the needles tere but not quite as big as the other operation, and no close ups this time.

From Forty To Point Something in Thirty Days

2005-02-10T20:34:00.000-08:00

Of course I was not worried, I knew everything was going to be alright! I had quite a few doctor visits today. This morning as I woke up I got the news, although not official, it was quickly pronounced as "good news". It was only a tease though. Dr. Robbins had not fully looked at the report, but from what she saw it was "good". I was a little annoyed with the limbo stage and large range "good" can be. But in a few hours Dr. Syanni came in to see us(mom and me). I was sweating profusely, and I think that instead of urine, the fluid is draining through my sweat glands now(Great...Sweaty soaked arm pit stains.)So as she began talking mom was holding her breath and I was dripping sweat. She assured us good news, and this time there was an official report to back her. Less than 1%. That is a thirty-nine point something improvement from a months ago today when I started this last bit of chemo. This is extremely good news, although not complete remission which would be ultimate, it is the next best thing. Dr. Savoie(my oncologist who took my case) called it Remission with Minimal Residual Disease, but whatever, I can now say I have 0.32%(something like that) Leukemia.

Dates were mentioned for transplant, it looks like a month will see me back in hospital, oh yeah and I can be discharged tomorrow!! March Ninth is the proposed date, but along with that it needs to satisfy the donor(who I found out is from North America if that narrows it down any for you). I may or may not be able to contact him afterwards, I guess I have a bit more information: he is a twenty-five year old and matches very good, they just have to do more tests for hepatitis, HIV, and other possible diseases, but so far it looks very promising especially with back-ups.

So with having a month of nothing to do I am being put on some maintenance chemo drugs, I was given Vincristine today, and will have a couple of pills that I will need to take over the month. Unfortunately I will have to have a couple more Lumbar Punctures, one tomorrow, and maybe next week too. It may be back to the headaches again... I mean...No, I won't be having headaches this time. Next week will be busy. I have to see the Opthamologist, and get a whole bunch of other tests done to confirm my readiness for transplant, and compatibility with my donor, which is fairly certain. Before Transplant I will see the bone doctor, the heart doctor, the lung doctor, the eye doctor, the dentist, the radiologist, the pharmacist, the social worker, and the psychiatrist. Not all at once of course.

Like I said, it will be busy month, many preparations, and I will have to try very hard to increase my strength significantly otherwise the next phase will be slightly difficult, "slightly may be an understatement. I won't turn into a body builder in the next month but maybe tone up a bit, lots of protein, and carbs to get me a little more weight on before the long haul.

I forgot to say I lost another 3.7 kg from yesterday afternoon to 8:00 this morning... Incredible...I guess, I feel thinner, but I think my stomach really is a bit tubby now(too much ice cream.) Indulgence, if you like(or can stand) some kind of food in the hospital, it is a good idea to eat it!
Justin:)

Improvement...Good News

2005-02-09T15:42:00.000-08:00

Well the past few days haven't been the greatest days being in the hospital, but they for sure have not been the worst. I am feeling a thousand, maybe not a million, times better that I could have said two weeks ago. The past few days have seen great improvement in my state of being, of course I never lost spirit, but I did lack movement. It was hard, at first, to stand up. I think it was an understatement to say I had only gained twenty pounds, a safer bet was in the twenty-five to thirty range. In just the past two-and-a-half days I have lost a whopping five kilograms, this translates to about eleven pounds, quite a sharp drop, and something to worry about if it were not water jiggling around my waist. Speaking of which my waist is shrinking, as well my lower extremities are about normal too, a little stretched, but I think it will be normal again. I still have about six kilograms that I should be losing, and it is showing in my excretions, I am voiding litres at a time. It is amazing that when you are full of fluid how far your bladder can stretch, I just hope along with the stretch marks I don't end up with loss of bladder control as well. I am not turning into a woman, and I refuse to wear Depends!

My walking is getting less wobbly and more controlled, I have been working with the physiotherapist who walks around with me checking my oxygen saturation while I walk. It was more difficult last week, but today I took my oxygen off. I still feel a bit light headed, but in conjunction with my hemoglobin being fairly low, this is something normal, my body just isn't getting as much blood circulation as it would normally. I am at 83 today where normal level is 137- 180, needless to say I am low. My white counts are lower too(2.6, normal 4-11) but everything climbed a few points today.

Things are happening really fast, I was just interrupted by my physiotherapist to go walking, without oxygen I was able to walk about four laps without my saturation going below 90%. Very good news, this may mean I am able to get out of the hospital for a little while, soon!! I seem to improving fairly rapidly.

On my walk I was interrupted by my Bone Marrow Transplant nurse. More exciting, but nerving wrenching news. I have a donor. Full matches, with a few back ups with full matches!!! I am shaking right now, I feel like screaming, crying, or laughing, I don't know what to feel. It will be soon, I think the donor may be from Calgary. I just have to wait for more good news, remission! It's very strange how things piece themselves together!

I had my fourth Bone Marrow Biopsy yesterday, I was given like five needles of anesthetic, she froze me good, way more than I have ever been. It went pretty good, hardly any pain, just the part where they wrench on it to get through the bone, the doctor was a little wimpy and had a little bit of a hard time. Eventually it got through and down into the marrow, but she did this twisting inside me because she said she had to make sure the marrow sample broke off, so she was twisting the needle, vibrating inside my bone....The weirdest feeling, could make you sick if you really thought of what was happening. Meanwhile I had the lab tech and the other doctor taking pictures of the procedure cause I hadn't seen it before. I'll post a few of them, I wish I could have got more close ups!!
Anyway, that's five days since I was here, I will try to be more consistent, but if not don't worry!! Justin:)

2005-02-09T15:41:00.000-08:00

The aspirate, and the sample in the jar...

2005-02-09T15:40:00.000-08:00

The sample, my marrow...

2005-02-09T15:36:00.000-08:00

Jabbing for the sample....

2005-02-09T15:35:00.000-08:00

The Samples they test...The slides are made by the lad tech, fresh outta me.

2005-02-09T15:34:00.001-08:00

Cleaning up the mess...

2005-02-09T15:34:00.000-08:00

Giving the Freezing!!

2005-02-09T15:31:00.000-08:00

The "Tool" they use for the Biopsy, the big blue one takes the sample.

Summary...Three Months of Living

2005-02-04T23:03:00.000-08:00

Time goes so slow in the hospital, at least I don't have a clock that stares at me across my bed in this room that I am in now, that's what I would spend a lot of time doing, staring at the clock. Something surely to make you crazy eventually. Today marks the third month of my becoming diagnosed, that fateful day in November, I still remember it perfectly, it wasn't very long ago, yet it seems so far away already.

So far I have been diagnosed with ALL, a form of Leukemia(the better kind to get I suppose). My initial state was not very good, I was a very sick kid. I was immediately put on antibiotics, and tests were done. My parents were given news, my life as I knew it had stopped dead in its tracks. Things were bad for the first few weeks, all the emotions and the sickness, I saw my body change, wither away it seemed, but eventually I was back on my feet with an appetite. The next four weeks were not very hard except for the waiting. It was made easier by the visitors I had been having, my friends that I had made through Katimavik. I actually met a girl that became more interested in me as she came to see me more and more, we kinda have something going now, even though she is working at Club Med in the Dominican Republic. I don't know why I have kept her a secret 'til now, but she was a big help in keeping me grounded in the hospital. As well as my mom who has stuck by me the whole time, at some points everyone in my family has been here, but life does not stop at home when you get sick, so life continues and we can't always be together but we can love, it's been hard on everyone. I miss home now.

December was kind of a jumbled mess at the start. Being tossed around whether or not I was going to get to go home for a week or two, if I was to stay in Montreal for more treatment, or transfer straight to Calgary to start. Eventually we were given the ok to get the heck out of Montreal, I was leary of leaving, the comfort of familiarity is easier on the mind than thinking about a new hospital, new doctors... We made it here and found the doctors just as good, and he nurses are good too. I continued my protocol through December as an out patient, and just to go into the Daycare center for the odd chemo, or LP. I was plagued with headaches though, so I spent a great deal of the month in pain, or laying on my back. Miraculously they subsided during Christmas, a few days of relief and I was able to enjoy it with my family that all came to Calgary to of course see me and my mom. It was really nice to be a family for a few days, even if it was only short.

The end of the holidays I was again not feeling really well, at the same time we received news that should have been known before Christmas that my Leukemia hadn't went into full remission meaning my chemo wasn't strong enough. I had to do more, a whole new protocol. I would start in a few days. It went fairly well, except that I was back in the hospital, the food, the uncomfortable beds, the middle of the night wake-ups, interrupted sleep, you understand. I did get a guitar for Christmas so I have been trying to teach myself. It's not going too bad, but I think I need some professional help, all I can play is Twinkle Twinkle, but I am getting 5 main chords down, just got to keep practicing. I missed two weeks of playing though; I got sick, very sick. Three Fridays ago I started that fever, ending up in ICU after almost a week and spending time there to get my lungs back so I could breath a little more normal again. During ICU I became swollen, still am, but slowly it is coming down, but my skin is stretched, I will likely look like a previously pregnant woman, stretchmarks and everything(no offense to all the mothers out there.)

So my lungs are on the mend, my body is on shrink mode, and I am learning how to walk again. It's going to take some time, but I will get back to what ever normal is again, before I get to go through it again, a longer process, the BMT. I have a list of matching donors already, so things are looking good in that direction. All I need now is my next bone marrow biopsy(next week) to tell me that I AM IN REMISSION, which I WILL BE!!!

Justin:)

Entry number ?....Lost count

2005-02-03T21:54:00.000-08:00

Today...It was a hum drum day. I haven't been feeling very good today, my lungs...Breathing is somewhat difficult still, but it is improving and will continue if I am diligent with my exercises. Also the fact that I am now fat does not help my feeling any better. When I was put on so many antibiotics at once all the fluid started to become retained in my body, flowing out into my flesh. I have gained probably 20lbs. at least, in the past two weeks. Laying in bed, losing muscle, and gaining water weight doesn't help you to move around very easy. It is getting better but skin is sore because it has ecome stretched in awkward places like around my hips. Even areas "down below" have been affected...Have you ever tried walking around with a huge grape fruit between your legs? Well, the fluid start to leave soon, and then I'll be back to "skinny" me, well I know I will have very little muscle mass again, but I just got to keep on moving, stop laying in bed.

I had a respiratory therapist come in and do some breathing exercises with me, very simple, but definitely will help get my lung capacity back up. I was sick to my stomach a few times today, actually only this morning, but it passed. I slept a lot today, I think I may be catching up on ten nights of barely sleeping at all. When I was in my "insomnia" stage I would drift in an out of consciousness and begin talking like I was awake, I was talking on the phone once, playing games with my mom at the side of my bed, I am sure she thought I was nuts, I even tried to explain how to play a game to one of the nurses in one of my stuppers. I am laughing right now thinking about how ridiculous it all sounds, I was aware of what I was saying, yet it really made no sense at all. I have no idea where all those things came from...I guess I was delirious from the constant fever. When I was five I had a bad fever, and I still remember seeing the alligators and scarecrows coming out of the walls, and the "bad nurse" trying to steal my baby brother away, that was a really crazy one, but I remember it just like it happened. Speaking of delirium, a few other times, although I didn't have a fever, I was in bed sleeping and then all of a sudden burst out into laughter, not just chuckles or giggles, but outright boisterous laughing, uncontrolled, stomach wrenching laughter. My mom came into to ask what was so funny and all I could say was "I don't know!!!" and continued, probably for twenty minutes. Anyway. Enough reminiscing for tonight, I kinda drifted there but whatever! Lata Justin:)

Breathing

2005-02-02T22:00:00.000-08:00

Recently, I was forced to visit the Intensive Care Unit of the hospital... I was having trouble breathing, one of the worst feelings in the world. I couldn't imagine having asthma or another respiratory disease, in fact I don't know why anyone would smoke for that matter(just throwing that out there). Before I back to the ICU, lets go over how I got there....

Thursday night I was feeling pretty good, I ate some pizza for my second meal, as I was still starving and my aunt had graciously snuck it up for me(not that it was an illegal move or anything). Now I know it wasn't the pizza that made me sick, so don't put that in your head. Some freak bacteria-fungal-viral-parasitic something entered my body that night. By morning I was at a milder fever that would begin to get worse as the days progressed. My fever bounced around ranging from 39.0-42.0, hardly ever dipping to anywhere close to normal. I was sweltering all day, shaking at times, I didn't have hot and cold flashes, but the constant heat was good enough. Of course no one likes being sick, but over four days of having a steady fever you begin to worry.

I was/am still in good hands; as soon as the fever struck blood cultures were ordered, I was rushed to be put on antibiotics, since I was so low with neutrophils I was very prone to infection for a few more days. I had the Respiration Team checking in on me periodically. Then the had the Infectious Disease Team in my room also periodically checking... Let's see if my calculations are correct, I have had about 10,453 chest examinations since two Fridays ago. But who's counting?! I also had like five chest X-rays, one of which I was standing and then suddenly passed out luckily to have said "I am dizzy" and gave enough time for the technician to save my head from the floor. I actually felt a little better after the fainting incident, but it didn't last long. I kept on saying that I would like to faint again... But it probably wouldn't have been a good idea.

So, no eating, cause it was hard to get strength to handle...You know that crap they give you. So I haven't really been eating much until the past four days.

Friday night(almost a week ago) I was having breathing problems, about three days before I had been put on oxygen just to be safe, keep a steady flow. By very late Friday night I was on a steep downward slide, I could barely put out a sentence when the ICU doctor came to see me. He said I better get to the unit immediately...I was on my way.

The name Intensive Care Unit is scary enough, but when they mention tubes, lungs, risk, infection, it seems a lot more scary. It is definitely not a very great place to be, people look bad down there, laying around barely moving, tubes coming out of their bodies....Hospitals I guess are supposed to be like that. But when it might happen to you, you help but feel scared. If my lungs got bad, I would have to be put out and attached to the artificial lung system...That was scary enough, but relieved I "only" had to get a very uncomfortable mask strapped to my face that forced me to trace in oxygen. I didn't get any sleep that night, neither did my mom or dad, who had both been alternating shifts with me by my side.

I stayed in ICU for three nights, and then they figured I was ready to head back to Unit57, a lot less risky up here, since there are so many more infectious diseases down there. My neutrophils were high again, almost skyrocketed, so I had more of a defense against infection. Still what I have is not totally clear, but my blood culture have been coming back negative, so whatever it is, is either hiding, or no longer a threat.

As long as my lungs keep on improving I'll be laughing....You can't really laugh without your lungs!
Justin:)

Down Doobie Doobie Down Down Comma Comma....

2005-01-16T22:45:00.000-08:00

I don't really know whether I am addressing my blog to myself, or if I should be saying "Hey" to all of the people(it seems there are alot) that are keeping track of every word or disgusting picture that I put on my site. Don't worry, I won't post hemerroid pictures...That would be just, unbelievably disgusting!!

So, the week of chemo went better than I expected it to go. Yeah I puked the second night, and felt nauseous on a few occasions(even now a tiny bit), it was nothing like before, that first week in November was definitely was worse. But of course this is only the beginning of the phase, my counts are starting to drop. Only yesterday, my white blood count was 1.4, today they are at .6 - significant droppage... In any means, those rises and falls are commons with Cancer, on a happy note it means the chemo is doing its job: killing the bad cells, cause the good ones are going down too. The big test,however, will come when I am jabbed in the backside again for a lumbar puncture. This will tell the doctors whether my Leukemia has gone into remission, I am really sure that it will have by then, but it will be a few weeks before I can even be tested, the chemo will still work for a while.

Although, going into remission will be good news, it means the next step...Bone Marrow Transplant. Now this operation is going to be harsh! Technically it is not an operation, simply, it is a blood transfusion, run over maybe a half an hour to an hour. No big deal right? Wrong! Very serious situation. At the point of receiving the marrow, I will have no immunity, or at least very little(my marrow will already be killed off, and my body will be producing next to nothing for any kind of blood or antigen.) Even though I am no longer producing blood, the remaining blood cells will try to attack the foreign substance entering me. I will be heavily drugged with immuno-suppressants, applied to help ease the affects of my body rejecting the new marrow. GVHD, or Graft Vs. Host Disease is very common with this procedure. Many side effects can occur, but of course there are always drugs to suppress the side effects of the disease. Once the process begins, it is likely that three months will pass before I am well enough to really do anything, or even leave the hospital, if all goes well that is(there are so many bad possiblilties because this had not been perfected yet.) It takes a while for the the marrow to fuse inside my bones, and start to produce the donors blood, another fact that is really strange, I will be producing new blood, possibly a whole new type, and definitley the person's DNA.

So I will be finding more out about this wnderful BMT on Wednesday when I meet the nurses and doctors who perform these... risky things. I don't want to worry everyone, but nothing is ever for certain in this life, and that is something we need to be prepared for.

Wish you a long and healthy life, cause some of us aren't so lucky, but I am not saying that I am one of them. I am still one of the luckiest people in the world!!

2005-01-16T21:55:00.000-08:00

At Christmas(I was Pipi, Santa's Helper)

2005-01-16T21:54:00.000-08:00

Me on the Beach(in Montreal)

Today....Day 3

2005-01-12T14:53:00.000-08:00

Well, I didn't end up puking my guts out, but it was bad enough...That feeling is horrible, but livable. It seems that the second dose of chemo I recieve during the day, is the one likely to get to me. I may begin to get worse as the week goes on, but I am literally half done this part, which will be finished Friday night. It will be possible for me to leave the hospital if my counts are good, and stay up, for you are more likely to get sick staying in the hospital provided the place where I stay is free of sickness. The pain in my chest and neck is still present, though it has gotten better since the initial insertion...(picture below.) Hopefully soon it won't bug me so much.

Anyway, chemo starts in about 10 minutes, so see you soon!

2005-01-12T14:33:00.000-08:00

One Huge Nipple Ring

Man...What's that feeling in my neck?!

2005-01-10T20:37:00.000-08:00

Well here I am...Back at 'er. I am situated at the Foothills Hospital, about ten minutes from downtown Calgary.... Getting chemo pumped through my veins. I successfully started my fashionably new protocol, that will (of course not guaranteed) get me back, out of this place hopefully for good, let me get on with my life, and never have to come back to a hospital.

My neck is really sore. My CV line was "plugged" into me this morning, about a 20 minute procedure. Of course I toughed it out, didn't get any of those "put-under" drugs the wimps go for. I didn't even take the freezing....Yeah right! They froze me, but the rest was easy, just the feeling of tubes being eased into the tissues, and underneath my skin. It still is throbbing, and uncomfortable to move my neck and arms in certain positions, just wait until I have to go to sleep. But eventually the pain, and throbbing will ease.

The doses of chemo I am, and will be receiving everyday this week, so far is going down good. I am pumping a bag while I type in fact. No nausea yet, but who knows, I may be puking my guts out tomorrow, you just got to take it as it comes! I am also on a stimulant that is supposed to help keep my white blood cell levels up, that way I won't crash so hard and become neutropenic again, but good things always have side effects, I may experience bone pain, because this drug stimulates the marrow, which lays inside the bone.

So, nothing really to report, except I am in so much excruciating pain, it's so unbearably unbearable...Psyche!! No, seriously, I am hurting a bit, but like all pain, it is definitely not permanent, I can already feel the tubes growing into the laying of skin. It is so gross to feel! But I am like Lance Armstrong, he had one, they needed to cut his out, I think 'cause it was totally embedded.... Shudder!!

Tonight I met a lady who is getting her Bone Marrow Transplant on Friday, she is excited, cause it will finally mean that her Leukemia is pretty much gone. It made me feel good to see that she wasn't scared, and was just thinking that this will all be over in a little while. She will have to spend up to three months in the hospital after her transplant, much of the same route that I will be following, once I reach Complete Remission, and find a match, and do my BMT, and suffer for a few months, and get better, and get cured, and go to school, and get a job, and get married, and have kids, and man there is so much left to do!!!

A New Year...Back at 'er

2005-01-09T15:00:00.000-08:00

Well, you haven't heard from me for a while... Just to reassure you, I haven't died. No I am far from that! I have been enjoying my time out of the hospital. Christmas went really well, and I was able to spend it with family which was really good. It went by so fast again, as it always does, but that is the holidays for yah! New Years wasn't so exciting, but I saw it in with a good feeling. My headaches were gone for Christmas, but slowly came back into the picture, though not as strong. I received another Lumbar puncture the 28th, it went well, but it's not a great experience, no matter how well it goes. This past week was supposed to be my last Lumbar for a while, as well as the commencing of my radiation treatment. As the saying goes, not everything goes as planned... I guess there was a fax sent to my doctor here from Montreal, bad news, that had been sitting in the tray since the 22nd. My doctor was away for Christmas until just this past Tuesday, and only since then have I known. My Leukemia is in fact not in full remission, it is at 40% still. I had another bone marrow biopsy done and this proved the results from Montreal.

I am to be admitted to the Foothills Hospital where I will again undergo another session of chemotherapy. So I am, for now, scrapping the idea of radiation, because it is no longer needed. I will begin a whole new protocol of treatment, since my previous one did not hit the Leukemia hard enough to wipe it out. This new regimen is called FLAG, an acronym that stands for the different drugs and stimulants that I will be given. As well, instead of a PICC line in my arm, a central venous line will be inserted in to my chest to receive the chemo and other intravenous juices. The reason for the CV line is it is a little less irritating, although I don't know about that, and that I will need one if I proceed to Bone Marrow Transplant, which is possible sometime after this chemo, if I go into full remission this time. If not I may go through another bout, no matter what the outcome. But that is enough of if...I will!!

As for my moral, it is good, of course I am not looking forward to being in the hospital, but I will make the best of it. I am still scared, this uncertainty is unnerving. The next month will be another challenge I am faced with, but what is a month...A tiny grain in the sands of time...That is a really bad metaphor, never again! So we'll see you on the other side.

So this is Christmas!

2004-12-23T20:38:00.000-08:00

Well the past week has been eventful, not really, but for me a little more out of the ordinary, or maybe not...I don't know. From last Thursday, I have been on ups and downs. My head seemed to be fine after the lumbar puncture on Wednesday, and on thursday after receiving my other chemo, I thought I was doing ok, well that ok sooned turned into a headache, and pretty much lasted the weekend, even Monday, it was still a little testy. So practically laying in bed most of the time, I got a little more of my book read, but still been procrastinating in finishing it, I don't know why... I was enjoying the book, I guess I am taking a week off, sorta like my break from chemo that I get here, during Chistmas. Monday, again, I received another "bout" of lumbar puntures. It was only supposed to be one, but it slowly worked its way to two. I kinda convinced the doctor performing the "highly dangerous operation" to go a little lower than the first one he performed the week before, but unfortunately the fluid did not come out like it ws supposed to. So, I had to do it again, this time about the same place as Thursday's. This time the fluid..uh...flowed, and it was over in no time. the worst part is the initial freezing and the part(reminds me of the matrix) when the needle is pulled out, it feels like a big metal rod coming out of my spine. My back has been achey since the last....THREE... punctures, it is tight and stiff to touch my toes, and it doesn't help having to lay down all day. I tried yoga the other day, but the bending over kills, I think the needles are depleting the working muscles very rapidly. I tried to almost run the other day, but that two, feels really weird, my legs just don't have the same capacity before my hospital rest. I can't wait to start moving again, it won't be long! Since Monday my head has not been on all the way straight, but it has been an improvement from the weekend. I have been on a few walks through the golf course nearest to where I am staying, so I do get a bit of fresh air, I should try to get out more often, the more I move, the better off I will be, but it still depends on how much my head can take... It will be better soon.
JustBust

Let's get on with it...Again!

2004-12-15T21:44:00.000-08:00

So with another day over in Calgary, I know where I stand once again, got the basic idea anyways. My appointment went today, pretty good, although we were a little confused at the start, entering the new hospital and being pushed around and directed to different parts of the building. It somehow slipped our mind that we would be starting all over to get the hospital cards, initial blood tests, and yes, waiting around again. I found the facility really nice, a big step up from the slowly decaying Montreal hospital, and after a day of "hanging" around, it was starting to become familiar. Sad but true, I feel comfortable being in the hospital, plus the staff there made it hard not to.... I guess I like being called "cute as a button" and having nurses fight over who gets to look after me.

We went over my protocol again, making sure I knew what was happening amongst this transfer from the east. The procedure was going to be about the same, the only thing that was different was that now I am scheduled for radiation therapy, something I was not really aware of, and still know relatively nothing about. Throughout the next few weeks, including over Christmas I will complete my second session of my protocol.

Today I started twice. The doctor first tried to perform my LP. Unsuccessfully, my back was frozen and she jabbed me with the needle as I almost fainted, or threw up as I was sweating, the cold horrible sweat. After attempt two she decided that I would try it through another method, using X-ray picture to pin point the exact entry of the "prick". This was a new procedure, but went pretty well, for having to be frozen for the second time of the day(which I find to be the worst part anyways.) After having the LP over and done with, I was able to rest, laying on my back for two hours in the "daycare" centre of this new hospital. I read for most of the time.

I have been reading 'It's Not About The Bike' by Lance Armstrong. As most of you probably know, he is the world classed cyclist who has won the Tour de France seven times, he's also survived a round of testicular cancer that had spread to his lungs and brain. Right now he is going through intense chemotherapy(in the book), and I am finding real parallels between his experience, although much worse scenerio than mine, it gives me confidence in my future of conquering this damn disease.

Challenges still exist in the future. My treatment is far from over, and it is bound to get worse as I don't know what to expect from the radiation therapy. I keep going one day at a time, and wait for tomorrow. For now, my head is pounding from the lumbar puncture and must get to bed, it seems to cure those incessant headaches. I may not feel well tomorrow, but there is always the next day!
Justin:)

Out...In Cowtown

2004-12-12T21:05:00.000-08:00

Ok, so I made it out of the hospital after a little bit of confusion... They couldn't decide whether to keep me, or let me go! I myself was unsure if I wanted to leave the sanctuary I have been so heavily guarded in for the past five weeks, but finally after packing up my things, I took that step... Into the outside world.

It is a strange place out there, you wouldn't think you would forget, but it becomes unfamiliar after leaving that single room hospital bed. I didn't think the outside world could be scary, I was over the fear of Leukemia, whats this new feeling that has come over me. I think it is the fact that I have to face the facts of reality now, not that I didn't before, but this time it is different. I have to face people. I know that I have so much support, but it seems very overwhelming. I don't want to be different, but I cannot help that. It will be hard cause I know that people may feel awkward around me, but I don't want them to. I may be sick but I am not really much different...I just have a cool new hair cut, that everybody will want!

I am presently in Calgary, my new city of residence for a few days for sure. I will be meeting with the doctors at the Tom Baker Cancer Center to arrange the next sessions of my treatment. It will be nice to know where I am headed and whether home will be an option soon. Although I am here, staying with family, it still does not feel...Right. It's still not home. But I know, this is one step closer in the right direction. I want to think of the holidays, but I think I am too out of place to do that. Christmas is only a day, and things have changed so much, but to be near those that I love and care for would make it easier. I know my mom is anxious to be home, it is hard on her too.

But like always, I will be fine, I just think things are building a little right now. I need to feel the positive a little more than I have the last few days. Mainly that I was getting excited about coming home, and then I was put in limbo for a while....Will I start the next session now? Go home? Go to Calgary? But now that I have been released, just one day at a time. I have to remember to tell my self that, and that to keep dreaming and keep smiling, and that it is ok to let everything go every once in a while.

If you read this please leave a comment or email me if you know my address, I am curious to see who I am sharing with! Take care of you...Justin:)

Oh Life is Great...

2004-12-08T01:48:00.000-08:00

Well, it's done....The final step has been put into place, and I feel great. Yeah surprising, this tough bout of chemo, wasn't all that rough. I think the hardest part of the whole ordeal was finding out that I had the disease, and stopping everything with the snap of the fingers. It hits you hard, but I guess it didn't hit me hard enough to knock me off me right off my feet. I haven't been all cheery the time either, I've had some really low points here in the hospital, but I have never gave up on it. This is still far from over, but the worst part has been completed.

Man it sure feels good, amazing things have happened while I have been here in the hospital, surprisingly, it has not all been boring. Those people who have done things for me, and you know who you are, have definitely helped me to see the other side of the tunnel. I am still driving but I can see the light. I have found love when it seemed impossible, but so much support has entered my life, my soul, the energy is phenomenal.

So with it being the final day of treatment, it is a major feat. My last Lumbar Puncture of this session was done around 4:20 today, and it went really smooth, a lot better than last time. I even took my life into my own hands... Letting the med student do it...eeeshh. But she was very good to me, I hardly felt a thing because the freezing went better this time and they easily found the spot to extract/inject. Christina did my bone marrow biopsy on Friday too, so I guess I am starting to trust these McGill med students. Is that a good thing?! Haven't died yet!! But so far no headache yet from this last bout of chemo, so definitely looking good... I am finished, I think I like saying that! It will be very strange to leave this place, it has been so long being stuck in one room, I won't know how to interact within society.

Now that the time has drifted past, I wonder what I have done with myself this past month. Honestly, I cannot say that I accomplished much, but I was able to remain fairly healthy during the treatment which really helps the chemos to run smoother. I know at points I have been bored out of my mind, but I managed to read a book(when I felt like it), keep in contact with lots of my friends and family, and spend some quality time with my mommy (every grown kids dream... But I love her so it was bearable..She is there for me always.)

This is sounding like a farewell note, but I guess it is more of a homecoming note. I still don't have a date but the near future is looking closer everyday. Possibly a week could find me back at home, for the short period before I venture off to Calgary for the next two week stop of this Leukemia Chemotherapy protocol. Christmas may or may not be spent at home this year, for me, not a big deal and would be nice, but my previous plans called for being away anyways, so we will see.

As for that, I am getting tired.... I am a very delayed writer, and have been writing/ becoming distracted for probably six hours now!! So now that the night has turned into another glorious morning, I must bid you adieu. Hasta Pronto, Buenos Noches, Bon Nuit, Good Night!

2004-12-04T14:58:00.000-08:00

Justin

Acontinuationofwords...more news from Montreal

2004-12-04T08:48:00.000-08:00

Well, today has become a day of surprises. The doctors came by for the normal visit, but with some great news: another bone marrow biopsy was to be performed, the one where they drill a sample of bone from my hip. The fun never ends! The next "good" news was to be that I have Clostridium difficile; a annoying bacteria that is becoming a problem in hospitals, mostly affecting patients who have been on constant antibiotics and have a low immunity. It causes diarrhea, fever and abdominal pain, some of which I am experiencing, but will not go into details as I did before. So my freedom has again been taken away from me as I must wear a robe, mask and gloves now to leave my room, as well as anyone who comes to visit must do the same. These somewhat shady tactics are put in place to protect the other patients, where as any "normal", not sick people are at very low risk of contracting the bacteria, but still have to be cautious. In case you're wondering there is no need to shout "blasphemy" or "Contaminated" and scream while running away from me... It is not too serious of a problem, but I am on another antibiotic to combat this bacteria now, so it is starting to become a never ending trend. Clostridium difficile is usually controllable within ten days of treating, so likely, it will not affect my (still unknown, but nearing) departure date for coming home.
Last week my hair started falling out. To some people this comes to them as a shock, and I have to admit that I was a little bit disappointed that my sexy blonde hair was going to start to fall, it was the longest it had ever been in a long time, and the girls in Quebec were going crazy over it, yeah sure... Anyway, becoming impatient with the process, I decided to speed it up a tad. So, and this might sound a little creepy, I started to, every now and again, pull out sections of my hair, grabbing fairly big chunks each time I pulled. Well I didn't make myself bald by pulling my hair out, but I did make my hair thinner, along with the amounts of hair that fell out on my pillow every night. I got the local hospital barber to come give me a chop, so with my military hair cut I didn't look too bad. The hair kept on falling, only this time it was whisker like, and a lot more itchy, so making a rash decision I went to the razor. I could only get the front of my head, so I had to resort to mommy helping me get the rest. So now I am a baldy, hopefully it doesn't start growing back in patches.
The last two weeks I have also learned a little more about my protocol. It is not as short as I once thought, as I was confused for a while at what what going to happen to me after I left the Royal Victoria Hospital. It has been cleared up a little and I know basically what will happen. Once I am ready to leave this hospital, I will be able to take a break from the hospital life for a week, maybe two, to come home and see everyone, have a little time with friends. After that I will have to start my second session of chemo, which is only two weeks, but it seems a little more intense. I will most likely be staying in Calgary for this two week period, but I am unsure as to whether I will remain in the hospital or if I can stay out. During the next session it seems it may be a bit brutal since I will be receiving four Lumbar Punctures in 14 days, so it is likely that my back will be a bit sore. After the second session I might get another little break, but then will start the next session which is divided into ten-three week intervals, mostly of which will be out patient, and therefore I won't have to be in the hospital. As I said, I don't really know much of the details yet, but the doctors are currently working on my transfer, talking with doctors in Calgary and my family doctor at home.
The past few days I have not been feeling my best, I have had a fairly good headache off and on throughout the week, but hopefully it is nothing, or just that it only has to do with the C. difficile...Who knows. I will go for a CT scan today to see if anything is wrong, but I doubt there will be, the doctor doesn't seem too concerned so neither will I. My morale has been pretty good, my brother and dad were here for a couple of days, so they were relieved to see me, it's easier to know someone is doing well if you see them(I know everyone wants to see me.) I have had visits from people I met in Quebec, so that also keeps my spirits up, as well as the nurses, they are all taking care of me! Other than that I have been thinking about what I want to do when I get through all this. Where I will go to school, just what I want to do with my life... It's so hard to decide. I know that I have to focus on getting better right now, but I am keeping my mind open for what is going to happen next.
I wrote this over two days again, cause I get lazy and stop writing then start again, so the start was yesterday!
Take Care, Justin:) Hasta Pronto

Almost Finished, the first part anyways...

2004-12-02T23:55:00.000-08:00

Well, here's how it is, this Monday, December 6th 2004 will be the final step of my first session of chemo. It's another one of those fun Intrathecal Injection, so I am really looking forward to it. My last one, two Mondays ago, didn't go so well. It took about twenty minutes of the doctor moving around a needle that was placed between two vertebrae in my spine. He was not able to find the right spot very easily, where he had to take it out once to refreeze, and on the second attempt it was a while before he found the spinal cord to take samples of the spinal fluid. I had a headache and felt a little nausious for the remainder of the day, and for the rest of the week my back was a little stiff and bruised where the needle had been placed. Only one more thing like that is to come, for now.
As for the rest of the past week and a half, it has been practically the same. My two Vincristine treatments did not have a direct effect on my body so it is a softer side of the chemo. As well, my blood components had begun to rise after my Lumbar Puncture. My white blood cells have all risen to about normal levels, which is a good sign, I am no longer at high risk for infection. Along with that I not am hooked up to the IV machine, no more antibiotics, and I don't have to wear masks in the hallways , I am actually allowed to leave this floor, even go outside a bit if I want. I feel strange not being hooked up to my cart, perhaps a little lonely...NOT!
It has been four weeks that I have been cooped up in this hospital room, it is amazing how weak your muscles become. I tried to walk upstairs yesterday, I almost died. I felt like I was learning how to walk again, I was all wobbly, but I made it!! The next day...MISTAKE... my calves are extremely sore, it's sad cause that was only four flights of stairs! I will have to do them everyday to build back the strength that I have lost.

.....This is just an add-on to my journal and this entry is not finished!! Justin:)

Justin...Leukemia...who would have thought?

2004-11-20T11:49:00.000-08:00

So here I sit, I am here in my single bed hospital room. It sounds depressing, it kind of is, but on the other side of things it`s something that has to be lived through, who said having a disease was an easy thing. Yes, I have a disease, it is still weird saying that... I have leukemia, one that is most common in children and young adults. The technical name is actually ALL(acute lymphoblastic lymphoma), for those of you who aren`t doctors, it is a blood disorder, really a Cancer of bone marrow. For people who have ALL, their marrow is producing abnormal white blood cells that eventually, if left untreated, will start to take over the all normal blood cells, including the red ones. In my case my red counts and normal white cells were down, reducing the amount of oxygen getting to the rest of the cells in my body and increasing my chances of infection. I was showing signs of abnomal fatigue, especially when participating in sports and other physical activities, even climbing the stairs had become more of a challenge. For me, fatigue is something very hard to deal with, usually I am fairly active and don`t like to sit still, so being stuck in a hospital room... It`s definately not one of my favorite places to be, but like I said before, I have to be here if I expect to get better and be able to do all of the things I love again.
The treatments have been going well, although I will not know the results until after the last chemo session is finished which is December 5. I expected chemo to be a lot harder than it has been, not to say it has all been fun. The first couple of days were tough, lots of needles. I had to get lots of testing done, so I had a sample of my hip bone taken (they freeze you and then kind of drill out a small cilindrical piece of bone, as well as a sample of blood from inside the bone). I also had an intrathecal injection and sample taken (a needle is injected between two of the back vertebrae and a sample of the spinal fluid taken, as well as an injection of Methotrexate, which is a chemo meant to kill the abnormal Leukemic cells that may have started to collect within the spinal cord and up into the skull.) I also got a PICC line inserted into of of the veins in my left arm (it is a tube that starts in my upper left arm and goes straight into one of the veins and extends inside my body underneath my armpit and near to my heart, although it sounds a bit gross, it is actually one of my better add on features. It allows all the bags of IV drip, chemo therapies, and medication to go straight into my body and not have to have one of those rather large needles jammed into my wrist of hand every time. My blood can also be draw straight from my line so I don`t have very many needles anymore which is nice.)These were not really painful, just awkward, well ok a bit painful... I won`t act tough. Three other intramuscular injections were placed in both arms and my butt. I have had more needles in two weeks than in all of my life put together, but I guess it is to be expected. The first Sunday I was here every chemo was given to me over the course of the day, each having different side effects, just to say I wasn`t feeling top notch at this point. I was receiving Benadryll to relieve the nausea that the other chemos were causing and was not able to eat much, if any of the awesome hospital food. The nausea continued for about three or four days. I hate nausea, it is one of the worst feeling in the world. My stomach muscles had also received a bit of a work out, I guess that is one good thing about vommitting, your losing weight from not eating and your pumping the muscles... Now that I think back that was a good work out, but next time hopefully it is not so intense. My last treatment went really well, it was only a bag of Vincristine that took fifteen minutes on my IV line, it`s side effects are not so harsh, constipation (which is hard, literally), but I have some creams to use for the hemmoroids it caused... and I am giving way too much information here. Hair loss is also a side effect for many of the treatments, but so far I am still the tall, blue eyes,blonde I have been for a while, my hair is fairly long and I have a `beard` growing right now, so I will look very manegy if all of a sudden my hair starts falling out, which apparently it starts coming off in clumps once it does decide to fall. My next treatment will be the same thing, which happens Sunday again. Monday is a different story, I will have another (my second) intrathecal injection which is know to, and probably will again, cause me to have fever, nausea and vommitting. Hopefully it doesn`t, I will not hold my breath, but like before I will make it through.
As for my morale, I have been staying very positive, it can be hard to at times, but I just don`t think about my situation as being so bad... It could be so many times more worse than this, which I am very thankful for. So many people have it way worse than me. I am in one of the best hospitals in Canada, have world renound doctors helping me out, awesome nurses (which I hardly see anymore because I am doing so well.) My mom has been with me everyday (she`s determined to ride out the time with me,) my sister was here for a while, but had to get back to school. My dad will be here with my brother in about a week, I think they are both anxious to see me, as everyone at home is as well. It is amazing how much love and support one person can have behind them, it almost hard for me to understand how people can care so much about someone, it`s a weird feeling, but it gets you through, especially when you don`t think you can last. I know there will hard days throughout this experience, but it is those people backing you that will stand you back up on your feet and push you to keep moving, carrying you if they have to. I feel very secure, even if I do not know what the outcome of my chemo therapy will be, I have so much lifting me up there is no way I`m going down!

I hope that anyone who reads this finds it informative, I want people to know what is going on with me, I am so far away that I know everyone has a lot of concern. But no matter how far away I am, I can still feel the love and support from everyone. It`s like a stream of light radiating all the way to my hospital room in the big city of Montreal. So thank you to everyone for everthing you have done for me, I don`t know how I will ever be able to repay you!

I will make it through this mess in no time, love Justin