Sunday, May 29, 2005


My Bread...it even resembles the cookbook picture!! Posted by Hello

Happy Sunday

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:)

Wednesday, May 25, 2005

Justin...Write...Journal

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:)


My KrazyKatimavik Group, and me the Animal Posted by Hello

Saturday, May 21, 2005

May Long Weekend...Day 64 Post-Transplant

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:)


Who is That Freak??!! Posted by Hello

Monday, May 16, 2005

Howdy

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:)

Wednesday, May 11, 2005

Some More Reading Material

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:)

Wednesday, May 04, 2005

Here I am...

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.