My Week

Here is Bluey and her pal Arlene. Thanks to Arlene for this photo, she must have been cleaning way back in the corner of the closet!

First of all thanks for your patience this week. I got seriously slack and that may have worried some folks.... but no news is good news in this case.

Monday afternoon I saw the physio again and he worked my back a bit but basicaly I've done what I can, except to keep up with the stretches and excercise. So unless I get a relapse I won't be seeing him soon.

Tuesday we went to clinic and had my lumens flushed and blood work done then waited to see Schoozenbootz and we got a very good chunk of information this time. I will always have a high platelete count (higher then your normal) because of the missing spleen so the current rise in my platelettes is my normal.
And they do not want me to get GVHD (Graft Versus Host Disease) where my new cells recognize my real body as a foreigner and try to attack it. And they don't use that as a way to get rid of the last of the fibrosis (scaring) in my bone marrow. That's a treatment that they use for chornic luekemia not not worth the risk in my case as it will probably go away in the next two years without their help. They don't do a bone marrow biopsy until day 100 and they also do a DNA test on the new cells at that time to confirm they are the right ones....ie not my old ones regrowing. So it is okay to not have GVHD! and I really am doing very well.

We were pretty excited so we went to a morning movie and saw the Singer it was excellent. rest and walks later.

Wednesday we nested and stayed in our PJ's all day and just vegged. It was ANZAC Day where Australia and New Zealand celbrate the men and women that gave their lives in the various wars. It's much bigger then Rememberance day here as it falls on the anniversary of Galipoli. google it.

Thursday we saw two movies at Portside Cinemas. The curse of the Golden Flower very neat and a huge scale. Very bloody and tragic so we watched a second one. Scoop so we had a comedy to finish on. It was okay.

Friday started early in the clinic again this time for imuno globulin (every Friday). I felt good so we tried to find a chair and foot stool because the one we ordered has been back ordered....again. we went to a new area where thare are several furniture shops in two close building. It did end up exhausting me but we got them all covered without finding anything as good as the one we ordered! So i slept for a bit then Jo and Gene arrived for as short visit.

Friday night was casual and good as we got caught up but we were all in bed by 9:00pm! Next morning we went out for my first resturant meal! We had stopped at this outdoor place walking distance from here before I went into hospital, and the kitchen is open to see and it's sparkling. We stopped on Thursday and double checked that my meal could be fresh cooked from fridge to heat to table. They were great and on the morning he had put us in a nice table and reserved the one next to us so we would have a little 'breathing room' Very thoughtful!. Great meal, great visit then we all took a ferry ride to the other end of the route and back. We were on the top deck and it was fresh and very nice. i was a little tired when they left at noon but a nap revived me and Bluey made great ribs for dinner.

She is amused each time the nurse at the clinic asks me how I'm eating and I say I'm not eating as much as I used to. 'cause she rekons I am shoveling it in. I may be but it's not sticking all that good, nutrition wise, cause I'm still losing muscle bulk and weight I think. Anyway I'm getting some good advice from friends on that front and have upped my carbs and have felt a litte more energy is available. I really have been dong more activities so that's good. I just need to ramp it up so I build some bulk. Tommorrow we hit the mini gym in the building and I'll do three rows on the rowing machine, then rest and three rows then two rows then one row. Oh it's tiring just thinking about it! Who knows It may go way better than that. No matter what..... it will be extra excercise and that's good.

Today we are blogging, emailing and reading the Sunday paper.

I thinking about Gayla's new lenses in her eyes.... old ones slide out new ones dropped in. Amazing... and she can see right away!
Ginger is on a revialtized hip and praticising her dance moves for the big birthday party next week. Twin cousins Jim and John are significantly older.....then i am ;-) actually it's only a few years but they always were so big to me. Have fun guys. I can't pass up the opportunity to mention my second cousin(?) John's daughter Lauren who is completing her degree this week and has just announced that she is receipient of a Fulbright Grant. Congrats Lauren.

I'm also thinking about my sister Melissa and her fiancee Mark and Mark's up coming fight of his own.

I used to love Spring in the Pacific Northwest of the continent. So get out and enjoy it. Oh yeah the weather here, as we close in on autumn, is a cool 26 degrees C during the day and makes good sleeping at night as it goes down to 18. ;-)

Bluey is a rock. And despite losing weight ... I still have a roll.

more later
Chris

No news is.......

This is just a place holder to let You all know that I am well, Bluey is well and things are progressing. What things you may egearly ask?... well I'll tell you .........later today.
more later Chris

A weekend of firsts

Here's chilli visiting with the Marbardis for Sunday brunch. Its the first time I've seen her since I went into hospital 6 weeks ago. I had to be careful to just pet her then wash right away but it was still nice. She didn't seem to act strangly to my new self. So maybe its not as big a change I've been thinking. Greg and Anne along with Callum joined us for breakfast and we had a good visit. we got caught up and had a good bunch of laughs. Greg and Callum are constantly making word jokes at every turn it was fun to hear that banter again.

Saturday night we went to Bevs for dinner.. First dinner out and first giant flight of stairs! We buzzed in the lower door and told Bev to sit back I would be up in less than a half hour, but it was surprisingly easy. I do better going up then down I guess. We had an absolute cracker of a meal. Really tender Roo done in a bush lime, myrtle, wild aussie mint and toasted cocunut sauce. Yum! it was so good, I cleaned my plate. Roo is good for me too! High in nutrients but lean and low in chrolestrol.

Met my first stranger since being out , Kathryn a collegue of Bev's from one of the the older services joined us for dinner... very nice lady. She was awaiting news about her fourth grandchild due that night but being a bit reluctant.

Joyce brought her new Sky Scout http://www.celestron.com/skyscout/new/index.php along and we got to give it its first go. it was great. Even with clouds we got a views of Alpha Centuri, Canopus and a bunch of others... big fun.

Earlier in the day on Saturday I got my first two bags of blood outside of the hospital. My red cell and hemo is nice and high and I definitely feel better.

Monday bodes well with a couple of walks planned and a visit to the physio this afternoon.

more later
Chris

Mysteries of life

Okay there are several mysteries to ponder today. Why does the washing machine leak like a sieve except when the repair guy arrived this morning? Why have my feet 'flared up' again? Why do I not have 'puff' when I am eating not badly? Why didn't the podiatrist just fix my feet? Why don't people dressup to go into town any more?

On Tuesday my feet started hurting again without any procation on my part! but I thought... great, as I'm going to the podiatrist on Wednesday and this will give me the full deal to talk about. On Wednesday I thought I would walk and ferry to town to try and stretch the feet out. It was unfortunately lunch hour and the streets were crowded but we got there in plenty of time and my feet weren't worst nor better when I started. The podiatrist checked me out and said I had no pathology showing, that they were nicely formed and that my shoes were a good choice and the insert I'm using is a good choice. The only thing she offered was that I try lympathtic drainage massage because all the bad chemistry is dropping to my legs and feet. So we hobbled back home and I selpt for two hours. My feet feel tired today and a little stiff but not as painful I think. It's a mystery.

Thanks to Jim the runner for more advice on energy storage and to Mary-ellen. I'm trying to eat more Low GI carbs and see if that increases energy. I don't think I'll be doing any weight lifting soon though.

No kidding it was classic. The washing machine has been leaking for a week and we mop it up regularily. The building handi man had a look and said it's not the hoses call the appliance repair guy. He came this morning. He moped up used new dry towels to try and spot the leak and NO LEAK! no hint of a leak. He tryed every part of the cycle...nothing. He left it pushed out with a towel down and Bluey is doing a few loads but part way through load 2 and there is no sign of a leak. It's a mystery!

Mary-Ellen stayed the night as her husband Wal was in the hospital getting some tests. They were negative for artery blockages so they are back to the drawing board by the way. Anyway we got to talking about how we used to get dressed up to go to town for appointments or even to go shopping but many folks don't do that anymore. There was an article in the paper here, that folks going before magistrates don't even get out of t shirts and jeans and often go to court in bare feet! What's that about. You would think that self preservation would get you to clean up to show respect for the court, but apparently that doesn't matter. It's a mystery.

more later
Chris

Aerobic Anaerobic I'm just an out breath-nic

Okay I've been pondering on something for a few days. I can walk for great (by my current standards) distances like a kilometer without really getting out of puff just sore feet and a back. I however have a problem in the shower when I wash or help do house work I get tired and feel out of sorts and need to 'catch my breath'. Bluey pretty much thought it had to do with my putting my hands over my head and working my heart and sees that there is a difference in the types of activities.

I went to see the Physio yesterday about my back and my feet and as he worked me over I asked about my 'puffedness'

He said oh yeah there are two kinds of energy using mechanisms in the body and they line up with what you are saying and then he used these words that I hadn't heard since high school Gym. So I looked up on the web and pulled these definitions off.

Aerobic Exercise—Aerobic exercise refers sustained exercise that uses large muscle groups and places demands on the cardiovascular system.
Anaerobic Exercise—Short-term, highly intense activities in which muscle fibers derive energy for contraction from stored internal energy sources without the use of oxygen from the blood; stored energy sources include ATP, CP, and glycogen; Examples, short burst, intense efforts, such as in sprinting or weightlifting.

My walking is Aerobic and I can get enough oxygen to do it okay. The Anarobic stored energy is a problem for me right now.

Heres' the challenge to my supporters out there. How do I increase the amount of ATP, CP and glycogen in my tissues! and what are ATP (not Alberta Theatre Projects), CP (not Canadian Pacific railway) and Glycogen (not what we put into radiators in Canada to keep them from frezzing solid in winter)

I bet my sister Melissa can have a go, along with the reaserach demon that is Merillee, Syd Mitchell is always full of interesting tidbits of information, but I'll take any thing that helps me build my stamina because its really weird to have to sit after the shower to get my breath.

We are just hanging loose today, we went into HOCA (the outpatient clinic) and had my blood tests, Cyclosorin levels, and flush my three lumens done. My red cells and Hemaglobin have dropped and that is part of the above I know. The rest was good. Didn't see Shoozenbootz but he is back and I feel good and didn't need to see him. If he has a concern about the tests he will call me and get me back in I guess.

Had a good nap after getting home from the clinic and now the blogg. Joyce is just a phone central this morning having talked to Jaq, Angela and Shinny. Yeah! we get to see her tonight!

Anyway I'm having an early lunch cause we had early start today.

More later
Chris

A busy weekend

Everything is fine. There are no problems, I just got busy with visitors. pictured from left to right Karim, Jacquline, Lisa, Alicia, Gene, Jo, Joyce, Me with Bev being kind and taking the pic thanks Bev.

Friday saw the arrival of Gene, Jo and two young neighbors Lisa and Alicia. We had a big dinner on Friday night and Bev came over. Which was good 'cause i had not seen her since I got out of hospital. Gene played guitar , Lisa sang and Alicia played her flute. We got up a bit late Saturday and had breakfast then Mary Ellen, Caitlin and their pal fom Japan Mio dropped by with another cake and we stuffed ourselves some more. Gene stayed with me and the Charlwood folk went to town while Bluey, Jo and the girls went shopping with an eye to looking at prom dresses for Alicia.

Gene and I crashed for the afternoon and later Jaq and Karim came over along with Bev and the girls rolled in at 6pm! we had another big dinner and jaq and Karim bought two cakes and the girls stopped and got a tart.

My sweet tooth came back a little!

Still we kept trying to send cake home with people. a really fun time was had by all. We sat on the verandah and sang and then Gene would play a song, Lisa sang, Alicia played flute, and then Jaq (an opera singer) let go after we pleaded with her, with the final song from Madame Butterfly. It was electrifiying sitting 4 feet away. She also did Summer Time and Over the Rainbow and by this time was getting calls from neighbours on balconys for "more More" it was fun.

I stayed up way too late all the way to 11:00pm! but it was worth it.

Got up a little later this morning and invited Lisa and Alicia's sister, Megan, and her boyfriend Josh, for breakfast. Poor Josh had to eat cake and more cake and take a bunch home. Gene and the girls left about noon for Hervey Bay. Jo is staying over for a meeting Monday then is going back with one of her staff that is coming down for the meeting as well.

Big time this weekend, I hope I have not pushed myself to far. Just had an hour and half nap and have plans for a walk a little later as the sun intensity drops. Bluey and Jo are reading papers and youtube.

For my pal Merillee who has a job teaching Oxbridge librarians new tricks. She has so far learned that trying to train in and 800 year old institution has its draw backs. Anyway Mer....Joyce has red hair now. In Australia they name anything that is not nailed down with some sort of nickname and the common one for someone with red hair is blue or bluey. (its a contradiction thing) Virgin Air Lines launched and brand new airline here a few years ago called Virigin Blue! Come to think of it it may have to do with a dog breed here. Australian cattle dogs (Blue heelers) come in two colors Red and Blue.

Still ticking along.

more later
Chris

Our dog

Our goal in life is to be as good of a human being as our dog already thinks we are.
Thanks Mumbles

Bluey is smart and I get Jimmy

I'm out of puff a bit today and it's frustrating. I feel not too bad. No fever, no pain, no nausea so it's a bit of thing with me that I just don't get going very well. I'm starting to get what our friend Jimmy used to say.

Jimmy is one of the oldest residents of our little suburb of Takura. In fact Takura, the town, is a sign on the road and Jimmy's fruit stand. Jimmy owns tonnes of land and he along with his family still cultivate sugar cane and pineapples. He has had a fruit shop and general store on the main road since way before we moved there. He's in the store every day of the week although he gets help from various daughters and grand daughters and gives that first job to many of the young poeple in the community. Jimmy has a crusty side I suspect but has always been a bit of philosopher. And he once seemed to be quite in a bother about something. Remember that Jimmy is in his eighties and has had lots of major medical stuff. Just ask him about his scar and you'll get to see it!

Anyway one day he said to me "chris, I just don't understand why I feel a bit crook today" It was after work in the afternoon and I thought I might be able to investigate so I said "what have you done today". " Well I got up at 4:00am and picked a row of pineapples (a pickup load), came back to the store and unloaded them. Then I went in to Maryborough to the wholesalers and bought the weeks supplies for the store and unloaded them but I haven't been able to much after that" !!!!!!

Now I have a long way to go to have anywhere near the work ethic or stamia that he has but i do sort of get the confusion of his because he used to be able to that without a problem and now he can't. I seem to be okay but now I can't get any where near as much puff as I used to.

Bluey and I were talking this morning and she helped me to gain a little perspective. Sort of like I gently told Jimmy that day, that he had done more work before I got up then I had done all day and that it was okay to feel a little out of puff. Bluey said "hmmm what was it you have gone through in the last few months.......oh yeh there was that major surgery of having your spleen out....oh and that other major surgery of having your gall bladder out....hmm....oh yeh and that other major surgery of having a tube stuck down your vein....hmmmm....something else......something......Oh and they TOTALLY KILLED ALL YOUR BONE MARROW OFF and filled you with your brothers cells! Are you nuts! of course you are tired!" We were laughing so hard I thought I was going to lose my breakfast. Then she summed it up. " it's day 25, 25 out of 100 days, you are only one quarter of the way down that track of recovery."

She's so good at making me see reason.

But I am a bit envious of my friend Gayla who had her first cataract removed and she can see right away. Forget that she has to wear those big wrap around sunglasses, that she probably has to watch for infections, and that she has the second one to go. The bit that was fixed.... her sight.... is working now. Although if we ask her she might rather have to deal with being out of puff a bit instead.

Reporting from inside the woods, but very close to the edge.
I'm Chris Olin, and there will be
More later

Chris

Another walk under my belt

Ipod fixed, bank guy happy and found the ipod remote. All the thinga a guy has to do before he can sit quietly and blog!

Just had a medium big walk downn to the point and around the park completely this time. I'm a bit out of puff. My left foot is 95% and no pain. My right big toe (big joint) is still stiff and hurts but the physio today said he thought it was goutish and the treatment (if not using drugs) is to maiplulate it into loosening up. Yes, that indeed does hurt like a son of gun. Half way through he gave me a rest (I thought he was finished) and said get up and see if that loosened up your walk. I reported that it had. he said "sorry chris, wrong answer, that means I do it some more"! Good gracious it hurt but was substantially better afterward and I'm even doing it myself several times a day. My gait was almost good this evening.

I hurt my back yesterday morning "twitched the vertaebrae" was his technical term because I wasn't warmed up before I tried to move too much in the morning so he gave me stretches that I do IN BED before I try to do anything. Then I get up and do my regular floor stretches. It's still a bit tender but better all ready. Just needs to heal on it's own. I'm going to go back and see him a few more times and get him to help me loosen my back up it's really bad. Then I will be doing really well I rekon. I've got nothing but time right now so I might even get him to help me with the Parrish knees, Mom and Grams had them. I feel they are not up to scratch already and I'm a bloody young man still. (No sniggers!)

Temp taken three times a day and it's been good all the time home. had blood pressure done yesterday and it was even down a bit still higher then my normal range but lower then in hospital. Bluey is a cooking dream she's got me eating good food and loving it. Chicken stir fry tonight! Almon steaks grilled with mash and ceasare salad. Yes it is good! and she's a little ripper. Full of positive thoughs and support. Gee I love her.

Trip to the city in the plans tomorrow and maybe shopping and a movie after school hols one afternoon. Still need rest in the day but that's to be expected.

more later
Chris

Care for the carer

Life at the unit is great! Two nights in a good bed is really wonderful. I'm still waking up several times a night at the regular observations times just like at the hospital!

We go to see Replacement Doc today and get set up on the outpatient routine. I have a great many questions to ask him now that we are at phase two.

I feel pretty good I haven't felt nauseaous for a couple of days and haven't taken antinausea pills in that time. I'm eating pretty well but still not big portions. And you won't believe this but I do not have a sweet tooth. The thought of cake makes me gag! I did loose weight in the end while in hospital and haven't weighed myself since the hospital but I'm down about 9kgs.

Bluey is a little excited in a good and bad way she's got me home to play with full time and she is full on being the carer but she is absolutely terrific!

For example she was waking every morning at 5:30 while i was in hospital and now she is waking later like 7:00am today. I think that it is just her body recognizing in her sleep that instead of "where's chris I got to find him" mode she's in "Ahh, there he is it's alright" mode.

She has been full time cook and full time dishwasher and cleaner for the past few days.

We have have some really nice moments together. We took a longer walk, about a km, yeasterday. We walked along the river board walk south towards Southbank and stopped many times in the gazebos set up for same. There's one that has a asian design and is open out on the water after pasing along a narrow walkway it's like a 20 person party room over the water it was so neat. We are going to take a picnic one day.

Got some great phone calls in the last little while from Jacqu and from Jo and from Gene. We have a new ride-on mower for the joint property with cruise control, a 42 inch swathe and 21 HP. There you go Don and Don we have a real competition now!

Let's shift the focua for a bit. Time to give Bluey a call.

more later
Chris

Not much to report on Easter Monday

A bit of a lazy morning today. answering emails. talking to Joni right now and talked to Jo earlier. bloging and resting.

My feet are almost good, still some mild pain and stiffness but we went for a great walk in the late afternoon down to the park at the very point of this area, and there were just tons of people with picnics. It was good and I didn't feel any worst for wear when we got back,except a bit tired, so that's got to be good.

Going to get going, shower then do a big tidy up to get the stuff from the hospital put away.

Seems strange to have no counts to look at but have an appointment to see my replacment doc tomorrow so will get bloods done then.

more later
chris

Home again Home again - jiggle the pig

yep this is me rugged up against the aircon but back in the unit! The halfway house! discharged!

I can't tell you how great it is:
to be 'home'
to be with bluey full time
to be on broadband again, 56K modem speed is so 90's!

It took forever this morning to wait for the doc team: the resident, the registrar and the consultant to give me the final nod, and then we had to wait for the meds but I'm here. Bluey has fed me a beautiful lunch and I'm blogging at light speed. Life is good!

Reality check: Just a question in the email from Jim about what symptoms are a usual part of a Bone Marrow Transplant (BMT)and what are my special treasures. mouth ulcers are a regular part because the chemo drug attacks fast growing cells: cancers, blood cells, hair and mucous (from mouth right through to the 'end'). I was lucky to only get the ulcers in my mouth.

Extra treasures: feet problems were there all this past year from time to time but they must have been triggered by the process to have all these little things happen in both feet at the same time. I'm seeing a podiatrist freind this week I hope to get real orthotics and try to get this s**t in contrl once and for all.

Health check: temperature has been under 37.0 for several days, blood pressure is still a little high, taking all meds by mouth,
____meds include anti viral, anti fungal, blood pressure, vitamins, Cyclosporrin, nausea, folic acid, bowel stuff
__________Yes I believe I will get off blood pressure as time goes on.
tummy feels pretty good, feet are much improved and I almost walk in a normal gait.

time to turn to normalizing my life, after the nap, anyway.

Thinking about Gayla who is way to young to be recovering from one eye cataract and the other one coming up. Thinking about my brother in law, Mark winning a battle of his own, and my sister Melissa for being there for Mark. Thinking about Dan just because I can, although I don't usually connect him with normal. Thinking about Kathy who is revolutionising the mental Health care system in Grand Praire single handedly. Hopeing Nate and Dessy didn't catch cold. Thinking about the school year ....must be a tough one because my steady coorespondents at USHS have gone to ground. Thinking about My bro in law John who still remains realtively calm despite the kicking he's getting from the buiding trades, but he is slowly prevailing by being the most reasonable but 'consitently seeking quality', home owner ever.

Bluey was shopping on ebay and got me a bunch of new mambo shirts. Apparently I'm a collector now!

Just gotta be strong, just gotta be rested, just gotta be regular, just gotta be relaxed, just gotta be me.

more later
Chris

Day 22 Easter Saturday at the end of the day

Out for a walk earlier today. feet are still not fixed but getting better and better. We see if i get discharged tomorrow. goodnight
more later
chris

Easter Saturday at the unit

Not much different then yeaterday except my tummy is a little more delicate but Bluey is taking that in hand, I'm getting a big lunch and smaller dinner. We are planning a walk in the park after lunch which Joyce is preparing now. She took me to Rock and Roll Fruit bowl, a great Italian market place with butcher, baker and fruit and veg and deli. It was a bit over welming but still interesting to see my reaction to all that good fresh food It was a good idea of hers to take me there I think.

Just did email on all the accounts and now the blog.

My counts are good. The platelets are soaring along with the reds; the Whites and Neut are bouncing up and down but that is normal and they stay in the normal range. Temps is 36.8 very good for me.

Back to the hospital tonight for sleepin at 6pm then maybe maybe chucked out tomorrow!

Home for a day

Snuggled in at home with bluey, after the morning routine I got sprung from the Hospital in a day pass deal. I have to be back just after dinner to get night meds etc.It's been great so fa,r had a visit with Annie then dropped off to sleep. Woke up in time to get my prelunch meds and watch bluey make a beuatiful lunch of grilled figs with cheeze and proscutto, followed by grilled chicken and salad. So tasty and so NOT hospital food, some thing great for dinner planned as well I rekon. Mary Ellen , Wall and Caitlin dropped by for a couple of hours visit which was so nice. I'm bloggin now and will drop off for another nap befor dinner.

My feet bothered me in my sleep but have come real good today. Almost no pain if I walk in my regular gait and don't twist them around. So they are on the mend for sure. Just phoned the hospital cause my counts weren't in when we left. They are all up and with significant jumps on the their own! very good news.

More day pass tomorrow, we might go out and about! Have to avoid crowds, maybe just for walk if my feet are up to it.

more later

Chris
PS bluey'sleading in the Hroid game.
PPS Thanks Dr John for the insites. Yes I can remember your thirteen year old trip and coming across your shoes before meeting you, they seemed like size 25 and for giants!

more on today

Another couple of Larries for our enjoyment and my support. Thanks to Mike and Gayla from Victoria.

No I'm not declaring that I was a moron today, just that I have more info on the day's activities, since the day is drawing to a close.

Had a really good sleep so was feeling pretty good after blogging and breakie and shower etc I took a walk around. I had cleverly taken painkillers in advance but it was still slow going and I was trying real hard to maintain a standard gait but looked more like I had pants around my feet shuffle. Anyway forced myself to complete one lap, Took the opportunity to pass out chocies to clusters of staff at the same time. That was fun. It was all..."for us?"... "oh no we couldn't" ....(sound of Hoover) and Gone!

Had a nap then got dragged to xray for my twice weekly chest xray then got back and bluey joined the fun for lunch and the afternnoon. Where I had a two hour nap! I guess I needed it. then bluey strapped on some new shoes to give more support and as we were off for another lap. Gait was worse then this morning. Guess it is one good gait a day for a bit. Annie offered to have girls night in to keep bluey company tonight and I think that is so nice. so bluey left after dinner was served here to beat traffic back to meet Anne. Have fun!

Still in the range of 37.1 to 37.6 today. blood pressure a bit better counts all good. I had a weekly iv infustion that I will get every friday even as an out patient. Pain is less today except when I walk but my use of painkillers is definitely down.

more later
chris

DAY20 AND HOLDING

Yesterday I was just hanging in my room a lot. Feet are still painful and I can't walk the halls like I'm used to. Got to see the Physio therapist who thinks that I have a number of things possibliy going on and gave my some stretches, some very practical advice about draing off the last of the fluid, some compression socks, worked with me to get my ice packs colder, but can't go any further until I talk to the docs who didn't show up yesterday. My ankles are now completely shrunk back to right size and there is definitely less pain. I was able to take a walk last night and took the opportunity to deliver chocoates to two different nursing stations.I think that as I get moving today, I will loosen up a bit more but it is still painful. Still havent heard from the docs what was on the xrays taken on Sunday. and it's Thursday now. This is why we are called patients because we have to have patience.

My temp stayed in the 37,? range yeasterday indicating a low grade infection but not high enough to bring out the full machine response.

I'm completely off the IV pumps and take all my mediction orally. They even askde it I wanted two of the large size CSA or four medium. I thought I might do the big pills and asked to see it. the big one was the size of the last two joints of my little finger and they were smelly. It's the four medium I take now ans I have to have them in a separate little paper cut that I allow to 'breath' before even thinking about taking them. Anyway if I could walk very far it would be great to be free. Theya re still taking day passes this weekend. Wahoo!

more later
chris

April 1st in Calgary - But this is no Joke

A pair of Larries.
My thanks to Dessy and Nate and Brenda to taking the pic.

Check it out, they are both in board shorts as well. See another photo on my album at http://s152.photobucket.com/albums/s195/chrisolin/
goodnight. My thoughts are with bluey and Melissa and Mark.

more later
chris

More good answers to questions

But first (in echo voice) The Heeeaaalllthth Updatedatedate
Seriouse nurse who is also funny nurse and yesterday grumpy nurse and bluely calls her my most compatabile nurse, (she's a bit like radar and knows what I want in advance) refused me panadol because my temp was up to 7,5 now 7.2. The thing is, Panador can reduce temperature which could mask a further rise in temperature so she's being cautious but every day now i have been a little warmer at this time. Oh well it just meant I waited for 20 minutes and had a differnt painkiller for my feet. Yes they still hurt and the docs don't know whats up with chris' feet yet. Had Xrays today but no report on the xrays yet. blood pressure 140 over 80 but it's been about this level for weeks now. Counts dropping a touch this morning except red which climbed a bit. food still awful, its medicine. Just got told they are no longer measuring my output, Wahoo, no more peeing in a bottle!

My pal Dan called from Calgary tonight. It was great to hear from him. We talked about the blogging experience as therapy as well as diversion, information desemination, networking etc. a long good talk. Dan says I have built a image of (in echo voice) Graft vs Host Disease as a giant negative thing. So to answer that here's the deal on GVHD. Since my immune system springs out of my new blood cells, that are from the graft, the immune system will see my body as 'foreign' and try to fix things. A little bit of GVHD is good, a lot is bad and it can become longterm. It's treatable if caught in time, temperature measurement being a big ally in the fight. It affects ususally one of these three organs: most often the skin by coming out in a rash, next most often the gut by coming out in indigestion and D*******. Sorry I'll say anything in this blog I just can't spell it! Lastly the liver, thats why they were so serious to see my liver is okay now. Chronic GVHD can be bad and reduce quality of life and that's what most worries me if I get worried at all. I guess the next most worrying thing is getting an infection that they can't get in control. but so far I am so far away from that that it is less and less likely. (sound of me knocking on wood)

I guess I keep mentioning these because just about every transplantee gets an infection or some bit of GVHD and I've not got either. (sound of more wood knocking) So I have to keep the possibility out there.

Speaking of Blogging my Cousin John has been holdign out, or i was just in chomo brain mode but he has been blogging since 2005! His is called As I see it and it's pretty cool I read back to January this year and thought it very neat. I was inspired to provide links to things; so find his on the lower left along with Shinny's, Mumbles, Callum, and Travis under Links for you by You.
If you want me to highlight and provide a link to your blog or website for people to see you pictures, listen to your music etc. let me know and I'll include it. For example Sid your adventures could make a great blog! Merrilee, yours would be very literary? Or go lowbrow and have fun. Anyway let me know.

more later
Chris

h-roids the worse roids in the universe.

me with thining beard and thining head. My god you cansee my wattle now!

Sorry folks I was out of action for a day. I'm doing good in all my counts but got laid low by my h-roids.

My feet are still a problem too but I am free of the drip of a couple of hours this morning and am going out of morning tea to the coffee shop down stairs.

I'm off the PCA (drip pain killers) and on to tablets for pain not there is much pain but if I need it. the throat ulscers are almost healed and just feel scratchy now. I'm not Cytotoxic so cn kiss bluey today!My last IV drip goes on today and tonight thewill take my lines off al together, I already have moved the anti viral and the anti biotic to tablet forms, today I strt getting my magnesium and Calcium as tablets. Wed nesday they will continue to monitor but I shoulf be able to get off anti nausea and the whole time eat better. My target was thursday as therecord we understand was Fridy Day 21. Anyway I'm not getting out then either way becasue they are unsure just who's the doctor covering at the private centre where I would be over easter. Shoozenbootz is going on holiday today and has turned me over to another transplant specialist who may not be the Dr. on call so the Docs here don't want me falling between the cracks. I'll get out on day passes starting friday I think, but not discharged until Sunday or Monday when I will be covered the next day by Dr. Replacement.
But all this is still up in the air to meeting all the criteria for realease. See post entittled "Answers to good questions".

My white and neutriphils are correcting downwards now that I don't have any more growth factor. My plates dropped a little and my red cells when up by themselves.

more later
Chris

Answers to good questions

My pseudo-sib Sid emailed and asked some good questions, the answers to which might be interesting to all of You.

"When will your new marrow be functioning on all cylinders?"
Well that's a bit like 'how long is a piece of string'.... but they have given me some guidelines that I am so far way ahead of. My new marrow comes from the new blood producing cells that are official engrafted and they have started to produce blood cells the white and neutriphils demonstrate that. I guess at this point I have to wait until I have red cells and platelets rising upwards, as well, before we say the new marrow is working right, but it is working.

"And how long will you be in hospital"
They say around day 30 (I'm at day 15) but I may be going sooner as my counts came up quicker but I think it will be based on achieving the following mile-stones:

No mouth ulcers
No pain meds needed for mouth ulcers
Switched all other meds to tablets
No nausea or need for nausea meds except the odd pill
Counts back in the normal range
Eating and drinking well
Self-caring
No temperature or signs of infection
Able to care for Hickman's myself.

Based on that list it may be that I go to the unit mid THIS week. I had the ultrasound of my liver today so that may mess my perfect world up.

"When will your immune system be working mostly okay and will you have to take anti-rejection drugs?"
The immune system will come up behind the counts and take months to be great. I have to be in touch with the hosp up to day 100 on an in patient basis (Actually its a different clinic but you get the idea). I will need blood products from time to time as mine lag, if they do. I will be taking anti rejection drugs up to 100 days. I will be in danger of infections up to 100 days at a diminishing rate of course. But the sores in my mouth and throat have started to clear up already and should be healed in a couple more days.

The dog can't lick my face for a year. The cruellest blow, but I can see her and pet her then wash my hands. I can't go near the horses for a year, I won't be Gatton this year or at the annual show. I can't go into crowds during the 100 days, I can't eat out (questionable food) for the 100 days.

I still have the possibility of Graft versus Host Disease at anytime in the 100 days - where my new immune system attacks my body as it sees it as 'other'

more later
Chris

Principles/parables of my life - a list!

This image contains more general 'truths' ....more universally held ones. My list below is In no particular order and is not complete.

Eat when you can; you never know when you are going to get another chance.
Sleep when you can; you never know when you are going to get another chance.
Pee when you can; you never know when you are going to get another chance.
( the above, along with “It’s okay to throw beer cans on the floor of the truck” are the Four Rules of Touring)

Never take anything too seriously
There is a bit of seriousness to every tease or joke; find that kernel of seriousness in every joke that someone makes about themselves; and every tease made to you, don’t be hurt by it, but learn.

I believe in the power of Positive Couture

Never go back

Color color color

Tease the hell out of your sisters but listen when they speak, all my sisters.

Hot foods should be served HOT and beer should be COLD

If a device is supposed to work in a certain way and doesn’t, then fix it!

Laugh and the whole world laughs with you, cry and you have runs in the clown makeup.

Play with kids, its good for them and its good for you.

(Crossover with Children’s Festival “rules” thanks Jo-Anne)
Be bold
Don’t talk to down to children, talk to them as they are, just short humans.

(Crossover with Dan’s rules of living)
If you’re are shopping and trying to decide on two items take the more expensive one, it’s obviously better.
Go big or go home
It’s never to early for Margarita’s
Don’t regret things you didn’t do live to regret the things you did do. Like skydiving, bungee jumping and making that choice to take a cruise even though you suspect you will be the youngest people on the boat. Take the Cruise.
Sleep when you die (Usually said at 2:00 am when trying to deicide whether to go on to that next club)

Never try to make a list of the names of all your supporters, if you are lucky you will have inevitably left some people off.

Let’s get a little lift let’s go to the Club –thanks Grams

Righty Tighty Lefty Loosey

Use "It’s been my experience" not "this is how you do it"…….

When asked a Question like Chris can you do…Chris will you…. Answer it in your head YES before the question is finished. For fun every so often answer out loud before they finish.

Use Positive affirmations ….but don’t talk about it, that’s so nuts and berries

Give generously, give of time, thoughts, love and money –thanks Mom

If you don’t have a big brother, find one, or marry into one. Even if he is only 4 months bigger.

Sometimes you should go up onto the roof.

Work is work. It doesn’t matter who does it and what their motivation to do it are. Value the Work. Never allow the phrase “Just a volunteer” to be uttered in your presence. Use the opportunity to teach the above.

Workers collectives are to be supported. Join your union. Give to the Christmas Fund. Take your turn buying morning tea.

Take people at face value

Until proven other wise take every statement uttered as truth. Do not treat the statement as joke.

Listen to people when the speak because they may tell you the damnest things

It’s never wrong to put your underwear over your pants, or pull your baggy pants up under your arm pits.

It’s never to late to reconnect with old friends.