Thursday, December 23, 2004

So this is Christmas!

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

Wednesday, December 15, 2004

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

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:)

Sunday, December 12, 2004

Out...In Cowtown

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:)

Wednesday, December 08, 2004

Oh Life is Great...

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!

Saturday, December 04, 2004


Justin Posted by Hello

Acontinuationofwords...more news from Montreal

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

Thursday, December 02, 2004

Almost Finished, the first part anyways...

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:)