A whack from the cosmos

You see I was too happy. Anyway I’m still happy but more cautious My feet have been giving me a problem for a year…… the left one has a bone spur that acts up from time to time. This time because the right foot acted up and I walked funny yesterday, so today both feet hurt. I’m getting ice packs and I’m already on pain killers so that it advances as it wants.

Dr David the new registrar was concerned bout my LFTs -Liver Function tests. He talked to me about a sound scan and since Dr. Schoozenbootz was the dr. on call and coming in any way got him in to see me today I was surprised to see him but my LFTs have been high for years so maybe they would get to the bottom of it . Don’t know when it’s booked for, my guess is Tomorrow so for rounds on Monday… they have the info.

Jac and Karim were here this evening along with Jo, Gene, bluey, at the same time my nausea popped up so I avoided dinner by talking to them. I’ve since had two drugs and am settled with a couple of protein drinks. I have a whole lifetime to eat real food so who cares anyway. Not much of a miss tonight bluey says. Karim has a new job starting Monday that he is really into and he took his tools into the shop this week. He had stories of that and they had stories of a trip to Melbourne. Very nice.

I understand my dog got a supper cut in sympathy with me . That dog is too cool. Hey Mumbles can you post a pic or email it to me for posting?

just a mini update for now.

more later
Chris

Wow Rick was drinking rocket fuel!

I reckon my brother,Derrek, but who I have always called Rick, must have been drinking rocket fuel before he donated cells. My counts are taking off like a rocket!

This is Day 15 and the third day that my counts are rising. Only 4 days ago I had zero neutrophils and today I have 4.6; the normal range is 2 -7.5….. In three days they are normal! They are higher then when I came in to hospital. The white cells are in normal range as well!

Granted I had a ‘whiff of G” that’s growth factor, and it has helped, but Rick’s cells are obviously liking my environment.

I am doing so very well they are a bit astounded. I may be going home this week and it may be the earliest that any transplantee has gone home (to Kangaroo Point).

I still have a ways to go as the platelets and red cells take longer to produce, we expect to see slower pick up on them. And then there is Graft verus Host Disease but I haven’t have a temperature yet so that is good. My liver is still a bit off the mark but it not tender so may just be the way I am built. My mouth sores are starting to heal already and are a little less sore, so may be off pain meds in a couple of days.

We just have to wait and see. But in the meantime let’s raise our glasses to my new hero Derrek Olin for having jet fuelled cells!

more later
Chris

Real Lift off!

Its official what was a tiny rise yesterday was a giant step today. In two days I have gone from flat counts to NON-Neutrapenic! Wow that ‘whiff of G’ yesterday was doing its stuff cause I went from 0.00 neutrophils to .07 yesterday to 1.07 today! Yes that does seem to be a big jump! They came from day 5, nine days ago, of 1.35 then down to.64 then.17 then .03,.02,.01 before going to zero and now coming up like that is remarkable. White cells did similar. It flattened to .2 for several days then yesterday was .5 and today was 1.8 that level was last seen in day 5 as well.

So Rick’s cells have landed and are producing new blood cells. They were talking about me going home next week if I don’t get a temperature. Still a lot of work to be done by my body and my new cells so don’t go counting chickens……I know Lisa and Alicia that you actually have chickens you can count but don’t do it yet.

My hair was coming out in chunks so I gelled it up today and then when Jo and Gene got here, I got rid of it. However Jo being herself did a pattern which you might see in this picture. Other pictures are at http://s152.photobucket.com/albums/s195/chrisolin/ they show Jo mid flight and me with little pom poms I made her shave off.

I’m going to try to blog earlier tomorrow so I’m not so tired as I am tonight so ….

More later
Chris

We have the smallest lift off!

the end of an interesting day. Got up after not a bad night but slept late 6:30. walked and started breakfast at 7:00 started to get my anti nausea at about 7:10 or so. at 7:30 without notice I lost my breakfast. the lesson is despite not feeling nauseaous, I might be, and I need to take the medicine BEFORE I eat.

I checked my hair and it is coming out in clumps. Which releived Dr. Schoozenbotz because he said " you're not coming into my day surgery looking like that" and laughed his head off.

Then I got the counts and found there was a very slight rise in both neutriphils and White cells. from 0.00 to 0.07 neut. and from 0.2 to 0.5 in white cells. It's small but its a start. Much later Dr. Schoozenbotz said that he wants me to "get a whiff of G" that turns out to mean a small dose of Growth Factor. 'cause he thinks I'll grow nutriphils like crazy now.

The other docs in the team came in, in the afternoon as well and think that if I do well and don't get a temp., then I might go home(to kangaroo point) next week! Which will be the fastest ever! Okay before we get too excited ...still ahead may be Host Versus Graft Disease which I can't start to get until my counts are back; and any combination of things that can give me a temp and infection. So we are still talking in the woods folks.

I wore a new shirt that Joyce gave me that went down a treat with the folks.

Thanks for all the support you are making it happen!
more later
Chris

Update and finish off things

Last night I bloged that I had a smell halucination. They had said on transplant day that the patient often smells OF roasted corn fromm the stuff that the cells are in. I have smelled the smell twice now. was so strong I asked french nurse to come in and see if she could smell anything (blind test: i didn't say what I was smelling) To my great relief and amusement she said "popped corn, the girl next door is eating it now." so much for my postive pressure sealed isolation room but that's all okay 'cause I'm not hallucinating!

4 pm I'm reporting feeling good with some pain but most masked. BP 135/75, temp 36.6,pulse still up at 86 good blood oxy. counts are as expected but got red cells today, platelets are up a bit by the selves, but Docs say that's not unusual just prioir to engraftment.

slept a couple ot ftime today. still walked and goong now prior to dinner.

Hi Nate Hi Jonnie, who commented her first time this week.

more later
Chris

What a difference a night makes!

I'm so much bertter this morning with out being that much better.....confused? I am still with a headache, earache, throat ache, now my glands are sore but I had 8.5 hours sleep in three blocks 9 to mid, mid to 4:30am, and 4:30 to 5:30. and the general feeling poorly is gone. took some extra pain meds so may have that under control now. So I feel so much better.

BP down to 130/70, pulse stilll a bit high, temp 36.6 Today I get the mini bomb STOP drug they call the rescue at 3:30pm sane time as the bomb yesterday, they leave it in only 24 hours so improvement in y future. Don't know the counts. weight 84.6 and stable.

Just want to let you know that i feel better today.

more later
chris

A bit worse for wear

My thanks to all the staff, volunteers and committee at the Hervey Bay Neighbourhood Centre for sending me this huge balloon bouquet. very fine addition to my room.

Health Check: Day 11
Pulse up a bit. Blood pressure a bit high. Temp=37.2 higher for me but still not a temperature. Second day of Comp....... broken this evening. weight good no need for laysix. Counts good for platlets and hemaglobin so no infustions today, will probably need platelets tomorrow. Pain increaing in throat and head.

Had a bit of a turn after lunch, thank goodness Bluey was here. Just felt weird but it went away. Too bad 'cause I woke uu this morning feeling really good and had enough sleep. Had the last of the chemo mini bombs and that set me off of my dinner, got the soup down and two glasses of milk though. Napped a bit and feel a bit better but still have vague uneasy tummy. Can't have my favourite - soluable rapid panadol. fizzy for tummy, gargle it on the way in for throat and swallow for headache. Will have to stay up until 10. I thought I had worked the timings out better than this, oh well. French Nurse is being very suppport and creative so I'm trying Endone for the head now.....good so far.

I've finished page two of the Carers Photo Scrapbook and Bluey brought pages in this afternoon. Page three is done as far as I have pictures but I'm still getting new (to me staff). That's 20 on each page so far and 11 on the the 3rd page. 53 people including the few cleaners and docs!

Bluey I do feel better but am going to start the sleeping soon. At least I slowed in the Number one rush. In the time it's taken to do this entry the endone has done it's work and the headache is receeding!

That werid thing where I strongly smell roasted corn is back, Might be the endone in combination with something. Maybe it's the mini bomb. It just comes out of nowhere and then later is gone. Very strong right now.

Haven't read comments or email will try tomorrow.

More later
Chris

Now that's what I'm talking about!

Thanks Arlene for doing a search to find this Larry Dog! You will remember that Arlene and Al posed in their Larry jumpers.

Travis suggested that as an act of freedom I should take out the clock batteries. Good idea but for two things. The Nurses seem to feel it .........the hospital is not about OUR image of resting it's about THEIR model. Otherwise the food would taste better, the blood would be taken after I wake up, there would be great mattress's, etc. It's just not done.

Bluey is the best, She comes every day, stays for hours and sometimes comes a second time. She is doing laundry every day and rubs creme into me every day. She spents hours talking to me so there is no possibliity that I am watching the clock.......just listening to it.

Health check vitals goods, counts that count are good and the two that are at zero are still there. Now we wait. Mouth still sore but I have Patient Controlled Analgesic so that is really well in control. Food is medicine as it has to chewed to a pulp then washed down, but I do, and it's tasty enough to make it worth while. Butter Chicken for lunch! Who knew! I won't tell you what I had to do with the chocolate cake, custard and glass of 'Ice Break' to get it down but was damn tasty. Got a twice weekly chest x ray by the portable machine in my room, way cool. Slept well. Took two rounds of waking laps. Last of four rounds of mini chemo due tomorrow. Yep they are still killing off my cells even while the new ones are starting. So we wait for engraftment.

Short blog today as Bluey is coming back for Doc Schoozenbootz rounds this afternoon, and I want to fit a nap in. Got two phone calls from Canada, today and yesterday. thanks

more later
Chris

Rant and Whine

You can't whine!......why not?.......You have to be stoic!.........really? But I really have a sore throat……..If you are going to whine, whine about something funny….or at least amusing………..Okay.

Remember in school there was a clock in the class room. They just came out with quartz movements and the second hand didn’t do a smooth sweep it clicked into place. 5 times 12 per minute. And remember those late spring days or even early summer when the air was hot and the school days were 27 hours long and you were in class suposed to be working at the end of the school day, and that clock just went tic tic tic really loud. I can still remember that sound…..tic…..tic…..tic. They canvassed my old school and got the loudest clock and put it in my room! I can hear it even if the door is open and the hallway noises intrude! I can feel it in my bones. I got even a few nights ago and started using ear plugs. Best $.25 I’ve ever invested.

I forgot the next story except it was going to have lots of asides in it.
_____An Aside is a tool to let you explain things.
I was going to need a new convention and thought an indent might help in the pursuit of clarity.
_____Susan is now rolling her eyes because I plan to butcher another grammatical idiom. I like saying idiom.
__________It ’s my blog and I can butcher grammar if I want to.
_________________See how my asides pile up and indent like crazy.
_______________________Sorry about the lines but the blog won't let me just leave spaces.
Anyway I can’t remember the story I was going to tell.
______I actually have purchased grammar guides in the past. A good one was in my thesaurus. I just don’t read them.
____________Hey Bluey how about bringing that thesaurus in to me? Thanks
_____________________I actually spelt that word thesaurus without spell check! The first difficult word in history I didn’t get help.
What?………..Drivel? DRIVEL!.............would you rather that I whined!........I thought not.

Okay a health check. Just the facts no whining! Temp is great=no infections. Blood pressure a little high but that usually is because my fluid load is high.
______Remember the disclaimer….birthin’ babies….don’t know nuttin’.
Pulse okay and blood oxy level good but down a couple of points. Counts for the day not back yet, it’s 9:00 am I broke with tradition and bloged before showering.
______Thank god they don’t have smell-o-vision yet.
Ulcer in back of mouth right by throat. Slight tendency to acid tummy, No D…….
______Figure it out ‘cause I’m not spelling it out (Can’t actually spell it ;-) )
Ate the soft stuff from breakfast like the Vita brits……no really put on lots of milk and wait a bit……soft! Late breking news I’m down to 18 for platlets so I get some infused. I’m getting Platlets!

Since the whining is threatening and I can’t remember the next story I’m going to quit after some messages.

Cory and Sian where are 100 words each? I guess you can have a few days to produce. Lisa you are writing some great stuff and it’s great to have your observations and the news especially. That above, is how to spell Sian, alias shinny. I am already a fan of Myth busters they are my heros. I’m sorry I missed Shakespeare in the park and don’t worry scholars have been arguing throughout the centuries about how to spell his name. In the end I knew whom you meant.
______I’m typing this in Word then cut a pasting to the blog and my grammar checker wants whom.
_____________I usually ignore the grammar checker……whom……sounds pouncy!
Happy birthday to my brother Rick on the 27th who shares the BD with his son Kyle the scoceer player. They are going out to a FIFA cup friendly game between Canada and Scotland, on their BD, cool eh? Pictures of you in Larry shirts still desired donations or not. And no fair cutting pictures out of Sears catalogue.
______Google it, Shinny…….
On second though if you scan a pic of the shirt and Photoshop it onto a pic of you, I will praise you and put it on my wall here in my grey room……to whinny?.........a bit needy……....there is a lot of other pictures up but there is still lots of room for more ….over there,…….on the clock!

More later
Chris

Lumen talk spacer

I haven’t talked about my lumens in a while. Warning: Medical pictures coming. Hide your eyes Ret. I have purposely posted this second post so that it fills the screen above the post with the pics so you don’t have to look. It’s just pics of the catherter going into my chest and a detailed pic of the ‘tails’.
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Might as well fill it with health update. No fever=no infection yet. Day 8. Well past the time others have gotten very sick, Am starting to be very obsessive with Jo's help about cleanlyness and using mask and washing etc. As I'm so good(top95%) might just try very hard to keep it that way. Still doing three laps up and down and aroung the ward, Three times a day. I do have a sore throat. For the first time tonight am thinking I'll start pain regime level one (if that doesn't work there are two to go) Some trouble eating dinner tonight because of throat pain but am still eating and still on the non-puree menu. Very sore lower back partly because room is cool and I tense up, partly kidney pain but no lasix to day Yahoo!. Nausea under very good control, don't know it might be and issue! Spent serveral hours today laying flat, some napping some just hanging with bluey but resting. Overall still amazingly good. But have a week at low counts to go. Still looks like woods to me!
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My Lumens, Counts, and some stories

I figured out a way you might partly experience the joy of a line set.

Take a piece of skipping rope and tape it to your breast about 4 inches above your nipple, tie on a plastic necklace of beads about three inches down the pipe, measure off six feet exactly then tie the end to a tree. There you go!

Okay our rig is mobile, to a degree as it needs charging at the most inopportune times. Anyway one picture is of my Hickman’s coming out of the chest fat and opening into the three separate tubes that are inside. Note the cloth tape the holds the weight round my neck. Other white cord is my ear phones.
The other picture shows my three lumens red white and blue, in this pic only the white and blue are used. The blue and red alternate every three days as my drug/bleed lumens and the white is always and only used for Cyclosporine as that travels in glucose syrup and can therefore be present in blood tests when they draw blood back up. They check my blood levels for the Cyclosporine to adjust the dose so this would be a problem if all the lines had Cyclosporine in them. Note that the two lumens in use have two and three tails each. And that all the tails and lumens have ‘locks’. Note that on the top of the tails there is a three way valve they use to access the side port. This can be used for emergency drugs or just the daily vampire run. Note that they have a smart bung on the blue lumen 3-way tap and not on the white one. See above. Smart bungs allow no needle access as they are spring loaded little dealies that allow them to wipe the end with alcohol wipe screw on a syringe and then when they unscrew up it seals off again no access to air less contamination. Every direct injection requires ‘flushing’ with saline solution. Some times before and after. And if the line not got something moving down it it needs to have a heparin/saline flush then some more that gets locked under pressure to keep out infection.

I get Magnesium drip, Cyclosporine, ?????aver, Calcium, anti nausea timed injection, anti-nausea as needed, many of these are multiples in a day I reckon we go through over fifty syringes a day. For me alone.

We might as well get the last of the big subjects out of the way now as well. The counts. I asked several question of the Dr. Skier today.

Aside:Dr. April was another great source of info but she rotated out yesterday and Doc Skier is taking time to repair his knee…… ‘nuff said except…. he did it at Big White! Small world. Google it, shinny ;-)

Aside: Have mentioned that I have protected the identities of my carers so that there is no disclaimer issues. Remember that none of us knows nuttin’ about birthing babies.

Doc Skier really finished off my understanding of the counts. We watch 4 counts in particular. They watch hundreds I guess but us patients only watch 4 they are:

Neutiphils (infection fighters) They go to zero. I’m at 0.03 Neutropenic Man! You are 2 to 7.5.

White cells (more infection I guess) they go to zero. I’m at 0.2 You are at 4 to 11.

Platelets (bleeding control) they don’t below 20 or I get transfused. I’m at 59 you are 140 to 400. I use to be between 300 and 600 and as high as 1000 or more sometime after my spleen was removed. It’s a hoot to have actually dropped INTO the normal range.

Hemoglobin (red)(oxygen transfer) doesn’t go to zero. If it goes below X I get transfused. I’m at 107(well above X). You are 110 to 180.

Now for those of you that were doing outside reading, .....and Johnny, You would have noted that “of course you can’t be zero in Hemoglobin (Hb) or platelets, you would be dead.” .......Well bully for you. I was not clear on these two, I had a vague feeling but still…. This was a Doh! moment for me today, to confirm that Dr. Skier was indeed, planning on keeping my Platelets and Hb up! Whew!

I have been preparing a list; a really big list for days now on….wait for it…… My Principles In Life….. (How pretentious is he? Really!) Shut up! It’s my Blog and I can List if I want to!..............Anyway it will be fun, I promise. One story popped in to my memory that I will preview here.

When I was 12/13 we moved from Calgary to Kelowna and I was in grade 7. I was in Jr High in Calgary but back into elementary at Kelowna. Not important I just realized but perhaps one of those bits that make stories more rounded ;-) (shinny, Please discuss in 100 words) Anyway I was early into books and was a regular at the book mobile in Calgary but the new school had an actual Library full of books! Remember that this was a school that had two schools on shift because our real school was not quite complete and my class was pretty rough with some pretty tough kids trying on, being adults, Smokers! Delinquents! Being the new kid I was trying real hard to fit in, being adult without going over to the dark side and trying to not be to badly bullied. So picture the first library day about a week into school in this room filled with books. I lost my head when the teacher asked are there any readers here; are there any books or series of books you want to know about. I stood up and asked if they had the “Freddy The Pig series”.

Book are good!
Technology is good too.

mp3Nurse make the mistake about asking about my Ipod & laptop, did I like Apple stuff? Don’t get me started just go here http://livepage.apple.com/ why would have anything else (cory: dicusss in 100 words, and not a rant)

P.S sorry about the unfortunate tittle last post.
More later
chris

just a note for the evening

read a bunch of comments that I hadn't seen in a while.
Sorry BP
thanks Lisa
saw them not enough time shinny
dude travis
ret you are a clever one
Alicia-loo yoohoo
bluey I love you now I'll quit....really!

Lasix (Lay-Sex) Express

Picture a bullet train...no the Express version of a Bullet train. It leaves it's home station and stops in 9 minutes then again in 10 minutes then 12mins,15,20,25,30,etc. Now picture a diuretic (die-a-ret-ick)(from the root word 'mefrigginkidneysarekillingme'). This train just keeps coming on it is relentless and when the Lasix express calls you don't do much but hustle.

I have to be on Lasix (this would be the 6th day (but not consecutively) because all the infusion and my chemistry make me hold water in my ankles this time my arms and calves last time. Good idea to lose water weight bad way to do it.

It's the first Chris go here straw poll! I asked double entendre nurse about .....What?.....the nickname?.....well I thought that foot-in-mouth nurse was mean, but she calls herself that! She really doesn't mean to do it, it just the way her brain works. She's pretty knowledgeable as well. Anyway I said to entendre entendre nurse (lets call her ententN) that my back lower back hurt today from the Lasix and she said that I was the first patient to actually connect the pain (feels like backache) to the diuretic! EntentN says some patients won't believe her that it's pain from the kidneys overworking. I was astounded. I'm pretty aware that I'm on the Lasix (remember the relentless train) and I connect it to the pain. So....

Straw poll #1: who else, be truthful, didn't immediately get that big pees connect to back pain through the kidneys? Johnny I have you counted in advance as "I Knew". According to EntentN the rest of you are "I didn't know" What the truth?

Just an aside: I put “what's the truth” but I don't believe that any straw poll gets at the truth ….but they are entertaining. Remember I live with a trained statistical genius.

What else was I going to talk about? Oh yeah… for those of you playing at home and those that were in fact reading/researching ahead, my chart says I have Myelodysplastic Syndrome. On Feb 20th Ginger came oh so close. 20 bonus point to her.

Okay there is gonna be some medical talk. It’s likely to be more boring than nauseous. But Ret better have Alicia Loo read ahead!

Now to put this into context. And remember that disclaimer that I don’t know nothing about birthing babies or medical stuff, at all, this is information of a general nature, so you must consult a profession medical person for your own diagnosis.

Disclaimer two: mainly for MargieB and Gerry… Gerry cause he point blank refuses to read the blog preferring to actually talk to me, Matt please please read this part to him. It will hurt my head to explain it twice. …..MargieB it will be a pleasure to review the high points in our next phone call (It will not hurt my head I just said that to motivate Ger to read the *&%$*@ blog.

I started with Essential Thrombocythemia (ET) (to many platelets produced by bone marrow) then two years ago it was changed to Myleo Fibrosis (MF) (scarring over and jammed up bone marrow, too many cells to fit the space). I guess I really had both but number two is more serious. Duh Chris you are in a hospital. They are both in the group of Myeloproliferative disorders.

Note: we were still not talking Cancer but technically they are all about cells reproducing outside of design specs, so yes it is a cancer but no but yahbutnobutyah. You’re beginning to see why I didn’t talk of this all those years ago it’s because it’s so vague a territory.

Anyway back to our story. Now I have these two diseases and Dr. Schoozenbootz offers a cure for these to diseases for three reasons 1. They have made my spleen the size of a foot-ball because it was hoovering up the overproduction of platelets and one of the features of MF is that blood stem cells use the spleen as a home base ‘cause there is no room in the bone marrow thus making it bigger still. I was running out of stomach in which to hold said spleen. 2. My bone marrow is not going to get unscarred by itself. 3. I am going to get Leukaemia down the track.

So here we are and low and behold I find I have yet a new diagnosis. Myelodysplastic Syndrome (MDS). This is starting to make sense for several reasons. One. I have a book in the rack of all the diseases! No ET book, no MF book, no Myeloproliferative Disease OR disorder book. Two. The book says “Myelodysplastic Syndromes (MDS) are a group of diseases which ALL affect to a greater or lesser extent the production of normal blood cells in the bone marrow.” Well we all knew that!

“In MDS abnormal bone marrow stem cells (called blast cells)” I knew that but now your do too!

”produce increase numbers of immature blood cells , these cells do not grow properly and often die prematurely. This results in lower numbers of mature red blood cell, white blood cells and platelets being produced. “ We are getting away from me folks….Unless it is over produced!

” the blood cells that do survive are often of poor quality, are abnormal in shape (Dysplastic)” good info!

”and unable to function properly. The release of these abnormal cells from the bone marrow into the blood stream is also defective. This means that people with MDS often have a very active bone marrow but a low number of circulating blood cells. Without enough red blood cells, white blood cells and platelets you can become fatigued (red), more susceptible to infections (white) and to bleeding and bruising (platelet) more easily.” We are getting real close here just one more little bit.

”There are different types of MDS” yeah we know that because you haven’t mentioned me yet!

”and the disease can vary in its severity and the degree to which normal blood cell production is affected. ……..some cases of MDS, approximately 30 per cent overall, have the potential to” Wait for it….. here’s the connecting bit.

“progress to Acute Myeloid Leukaemia, and MDS is therefore a pre-leukemic disease.” We have a winner!

This ties up for me what the names mean and how I got here without actually having Leukaemia. But here’s the kicker all the support for any bone marrow transplant comes from ….the Leukaemia foundation. Hence my appeal for their support. Sorry if I have confused things.

ANY LINGERING QUESTIONS! Anybody not connected to all the parts of the story. Cause it’s taken me 17 years to figure it out! Please email or comment and I’ll try (with disclaimer in mind) to anwer them for you.

Aside: I just noticed in my 20 trip to the toilet tonight that I had my lumens (Thin little rubber tube going straight to my heart) hanging down against my vest zipper. How to explain to bluey “I’m sorry your husband had a serious bleed before we stopped it because he can’t dress!” Sorry honey I’ll be more careful. Who knew you have to look after this kind of detail. Whew.

Can’t end on that note so… what?......what? oh yeah!

I’m going to make a photo comic strip about Neutripeno Man, Mild mannered nurse by day, Neutripeno Man by night saving the world, one neutripenic at time.


Oh yeah health update. Day 7 officially neutripenic (too few neutriphils, white cells)
Still not bad. Have one little mouth ulcer by my throat and problems with indigestion. I’m pretty lucky so far most others are much sicker by this time but shoe dropping may come soon. I enjoy energy still but am taking things slower. Naps must be a part of my life now. It is interfering with my projects….this blog…..comic ….digital scrap book pictures of every carer. (really to try to remember names, but have you ever tried to get a night shift nurse to pose at 6:30 am at the end of the shift! I’ve got time though.) ……researching my disease…… and my biggest project trying to find connection time to bluey, Jo&Gene et al. thanks for your support.

I’ll just get into my jammies and call you bluey.

More later
Chris

Busy, Busy, Busy

I've been creating Neutripeno Man!
I looked at my screen in Photobucket and there was the "share' information I needed Doh!
http://s152.photobucket.com/albums/s195/chrisolin/
I prosmised Bluey I'd lay down for a bit ans it's taken me an hour of fumbling to get this far today. I have tons of stuff to say be back shortly.
more later on Netripeno man comic, what my desease is called now, what the other counts mean and more lists'
More later
Chris

Yes Folks I have a "v" shaped mohawk. This is what happens when you ask a showdog owner,artist, to take a little off top and sides! I felt my hair was a bit long and in preparation of it falling out, wanted an all over buzz cut. But Jo said let's try something and I liked it. More photos at photobucket.com my alblum is under chrisolin I don't know how to get to them as a regular person so let me know so I can pass it on.

(To the tech Heads- it remembers me, so I can't trick it into thinking I'm a regular person.....Yes I did try it in a different 'window' .....Yes I did tell it 'to remember me', as it is a useful thing sometimes....No , I agree, not useful at this time)

Anyway it's Poodle with a Mohawk "He's small, He's Larry, but nobody's gonna call him Fifi again"

So I'm doing my laps (a pattern up and down the halls three times round, three times a day) and I'm gettin' some good laughs, good smiles, good on ya's etc. but I notice there's no clogging up at the corners and all of sudden there's no traffic jams....they're staying out of my way! I'm gettin' good air!
I've changed my foot wear as well the slippers weren't cutting it. I'm in my crocs! good traction and good on the corners. What I needed all along ........good footwear+good hair = equals good air.

Travis Travis Travis how could I! You were the first to comment!......okay after about 7 or 8 others but still you emailed and everything and I just got caught up in lists and missed naming you. And that's just the one I thought of today.

So if you were offended that I didn't name you and you have commented, thought of me, emailed or are just even breathing I apologize. I'm never making a list again! It'll go on the top of my list of things not to todo. Don't get me started on TODO lists.

Health update: pulse 72, blood oxy 98, respirations a little fast cause I've been hyper all day, blood pressure 150 over 80 (yes I know a little high but it's from the water weight, 2-3 kgs!) temp 36.7...update on the update Bp=140/80

I've been hyper active since 3:30 this morning. I've eaten many meals, taken photos of the staff that are caring for me, 22 so far and still snapping, but strangely did not blog until now, 7:30 pm. Bluey and Jo were here this morning with great coffee's and we laughed and laughed til after lunch.

This is Day 5 and the counts are getting lower and lower, as expected and desired, but I'm not feeling so bad. My tummy is grumbling a bit now though and I had a breathless moment at dinner. Bev was visiting and I really didn't give her much time to speak. But then she is great at what Merron along with Johnny Chorny taught their kids in Converstion Class! It's a game to try to get more information out of your conversation partner then they get out of you. You get to be a good listener and you discover more about your world. I'm not sure I would have passed the Drs Chorny school, but I still try. Bev would have passed....with honors

I keep doing that! starting out to tell about my health and getting side tracked. Tonights' health topic is Neutraphils (sp?) Remember the disclaimer! They are collectively the blood cells responsible for inmune system response. So when I get a count below one.one I am said to be Neutrapenic and unable to withstand infection from Bacteria, Fungi, Virus's ( I know Susan, you would think that if I can get it right on fungus I should be able to spell Virii Viri but see...it just doesn't look right!). Anyway You get the picture. I'm at 1.35 down from day -2 of 4.15. Steady as she goes. Tomorrow, I expect, I go under deep cover as Neutrapenic Man! Tommorrow's lecture is entittled "Platelettes - The only count that has dropped INTO the normal range not OUTOF it!

Spelll Check is for wimps! Stand by your actions!

goodnight
more later
Chris

P.S. That time down there is when I started to Blog not finish it's really 8:20 here.

P.P.S I just re read and fixed some errors, some were just palin embarrassing! Like that one! LOL.

More on the power of Positive couture

I give you arlene and Al proof that there is indeed power in the Larry look. Bright on the out side bright on the inside. Thanks for your support.

Thanks also to Merilee and Richard who pointed out some helpful hints for my Docs
bone marrow
n. The soft, fatty, vascular tissue that fills most bone cavities and is the source of red blood cells and many white blood cells.
marrow
n. Any of various squash plants grown for their elongated fruit with smooth dark green skin and whitish flesh.

I've been watching the tube pretty closely no veg marrow getting through.

Let me say again a to any one and my sister who is always thinking, that a party that rasies money for Lukemia even if it is just gold coin donation at the door would be wonderful. Melissa has upped the dress requirments to 'Chris, Cross or Krass' so her guests will be in Larry shirts, cross dressed, or Krassly dressed I love it, and fully support it. Have fun but don't forget to get pictures.

I've had another Austrlian pipe in, that Larry is a loud or bright shirt or any object, and can also be a loud arragant person.

Thanks to LisaAliciaDonRetErinTomAdrianTerryNicoleAshleyBobJennyDonFrancisCyrilMabelFredDonCarolJacuiSueMaureenThelChealseaStaceyKimLionelRuthJennyDavePiggyandMrs PiggotThrease,Bec and the new one I willl get to meet you!To all the teachers and BettyStevenMaxDrewthe cleanersAndy feathersMicPamHarryAnneLloydBecAndrewTraceeand the Urgnagan sunshine bandAngleaJoan the the folk at HBNCKellieMargartet JohnPeterMarionKristieand the arts and SS team at tafeDavidSusanKimWendyJAndrew
BevjaquuelineKarimSamLolGregAnneSianCallum
JimIrene
BradEllenBJNicoleLanceRandyJayCoralKevinJohnMarleneNicoleJohnnyArlenAlLynPeggyyZoeCassidyBoomerMellissaMarkKathy
CoryDevonDonnaMarkBPJazzRegsNateKathieVickiekDanMarieEmilyCol
JohnJimGingerKathySeanLaurenMrs.
DerrekCeciliaSerenaKyle thomasTraceyMartin Jessica MargeHeidiMikeGalaSivonneMikeWillieBob
MerileeRichard Sid
AndyMarion
Andto countless ohters that have sent their thought via these friends other firends the either and pray circles

Thanks to all
More Later
Chris

Day 4 catching up

two larries in shirts!
Alicia the traditionaists would have Randy talk to Wendy at the same time Gerry calls sandy then after that gerry and Randy figure it out, the other two can call each other to figue it as well. 3 calls to have the total scret 4 calls to have it in everyones hand, I would just call Alex and tell him the plan to bust him and he might just as well give it too me now! One call.Then use telstra conferencing to make the one more call to the rest.

Cuz a ride would be nice but would have to be negotiated with Bluey. Thought Wild Hogs was so funny if a little Hollywood predicable. I was thinking of your ride across but I think you are a lot more street smart.

To all you don't have to get a Hawiian shirt but something bright a crazy. Remember that the OP shops have them cheap though. Think about a having a group photo and making a donation to the lukemia association in your town.


thanks for tons of emails with support to me and to Joyce who's a trooper to me.

I got to go shower so a new nurse can practise bandaging my exit wound. Lifes rough.

more later
Chris

With out further ado it's Chris online at radiobed 24 5cRBW

It's really me in my hospital room. My counts are droping nicely and I haven't so far been ravaged by mouth sores or other things. That may still come. My neutriphils which are the imunesystem guys are stilll at a level that make me not "neutrapenic" See that door behind be It will be closed once I drop to that level.

P.S. I have a day nurse turned night nurse tonight that is just great.

Here's a great wallop of stuff that I had written over the past few days for when I got it online.

It’s Friday morning and I have had a rough night.

Wednesday (day -2) they started the Malfilan the final big chemo drug, I still was feeling none of the expected side effects but that night they started kicking in, nausea being the big one. Yesterday (day-1) I slept for most of it after an initial surge of feeling better that got me out of bed and showered and into casual clothes. Not eating lots and slept right through dinner. Was a really disturbed night with lots of new drugs added and my infusion pump beeping many time for attention, on top of that the drugs made me more nauseous and gave me a head ache so I was up a couple of times to fix that.

This morning (day0) I forced myself out of bed into the shower and I ate some of my breakfast. Jane the nutritionist was in and recommended some energy drinks the drinks lady brings around.

My back is sore and my nose is runny but the worse is the nausea and I was holding water a bit but seems to have moved on. Maybe not.

Nick, Lara, Chrissy, Georgie, Heath, Jill, Mary and the others have been great at nursing me and I feel in good hands

Today is day zero I get Rick’s cells this afternoon, Joyce is bringing a cake as it a tradition to celebrate this a new birthday. So I’m a golden pig according to the Chinese calendar. My second birthday is March 16th, which make me the same month as Derek! His is on the 27th.

That was written in the morning of Friday day zero. I slept much of that day with Joyce, Jo and Gene watching on. The preservative in the cells comes into my body as well and I don’t think I was imagining slurp backs of saliva in others as it made my body smell like roasted corn. I couldn’t smell it but everyone else commented. The cake was carved and enjoyed in the patient lounge but I was asleep, what with trying to balance the headache tablets and the nausea drip, injection and tablets I couldn’t keep up.
I did eat a piece yesterday, Saturday (day 1) I still look like the hulk from the Fantastic Four. but they started giving me redone for pain and an infusion for nausea so that is better I took several walks yesterday which felt good.

It seem that the rest day (day minus 1) just means that it’s a day to let the Malfluine work the have infused me with Calcium, Lasics(to keep the water working), Cyclosporine (to drive down my immune system, Magnesium (replacement), antivirals, antifungals, antibiotics. My nights are filled with beeping when one of the above is finished. Actually the main amount beeps the they set out and additional flush amount they when that beeps they set-up a maintenance drip at a lower amount to keep the line open but usually there is a new drug waiting to go, so every time there is a finish the sodding thing beeps. Wait for it ………I have four pumps going! Four time the beeps. I think Last night I slept through a couple.. yeah!

Today is Day2 which means among other things I get off the infusion lines for a couple of hours but I also get a folic acid infusion to stop one of the chemical put in yesterday. This happens again day 3 , 5, 7 (in with the bad one day out with the bad the next day.

It's nin at night so I sort out the time frame errors later good by from Day three
more later
Chris

I have no strings to hold me up....

I am off the drips due to a weekly flushing so they worked out that I could be free of my pal who I call ET. He is allways calling home! beep beep beep beep beep beep beep see how irritating that is!

Sorry Susan but the spell check tools are hard to use and as for grammar, it's all my own. I will try to at least make it memorable.

I'm not going to post to long today beacaue I done a buch of catch-up in my note book and I think I get connected in my room tommorrow. It's a bugger trying to use the net kiosk but what's a fellow to do.

Okay the big news is that larry shirts for luekemia is taking off. My sister,(Parties at anytime) Melissa has decided to have a Chris Cross Crass party, you come dressed as Chris in a larry shirt, Cross-dressed or Crassly dressed. That pretty much sums up my whole wardrobe!

Larry shirts, the term, came to me firstly from Trevor Dixon but lots of other Australians use it.

I throw out another challenge find the origin of the term Larry Shirt for a loud Hawiian type shirt.

more later

Doppleganger? Stunt Double? Understudy? Whatever... Joyce sends an update on Chris's Condition...

Take 2

Who knew you had to save a blog?

Anyway, Chris is doing better than we originally expected. Who is surprised?

On Wednesday Chris recieved his very toxic dose of 'Malph' ...super chemo...and manged to only be a little queezy. Thursday was a 'rest' day with only two other doses of a lesser chemo. Chris was quite ill Thursday night.

Friday, Travis (i'm only a scientist) and Lara (Super Transplant Nurse) administered Derek's stem cells to Chris. Apparently a lot can go wrong during ths simple transfusion, and fortunately, Chris went extremely well. The stem cells are administered with a Clydesdale sized dose of Phenergan, and Chris experienced waking dreams, or hallucinations that are vivid, but you know are not real. Quite entertaining for spectators!

I have some great photos of the transplant process, and of Chris's 'Birthday Cake' for the event. Even though he is in all of them, I doubt he wll remember! I'm sure he will post them for your edification, just as soon as he has seen them.

Today, Jo, Gene, Mary Ellen and I visited Chris first up this am. He was so excited to see us! We sat with him outside, and took him for some short walks in the hallway (Chris's new hobby!)

Jo, Gene and I returned in the afternoon to spend some time with him. He was up in the shower, getting dressed, had a full lunch and was full of beans! It was wonderful for me to see. He had a good dinner later in the day, and then fell completely asleep. We sat with him for a priod of time --comforting for me, and I think, him.

Over the next four or five days, Chris's blood counts will drop to zero, and he will become a very sick little puppy. Starting day six or seven, the new blood cells should start to kick in, and his health will slowly but surely increase.

He has a great transplant team at RBW and the Mater. We have heaps of confinence in them But, we have an even better team of 'Good Vibrationalists' --friends and family all around us who are making this journey possible. So, to all of you who keep the 'vibe' flowing, THANKS; to those of you who are helping Jo and Gene so that they may be here with us --I really appreciate it; to all our loved ones overseas, we feel the love!; And to all of you who have put up photos for the 'Larry Shirt Challenge' please be assured that your snaps will hit the blog just as soon as someone with technical expertise can manage it! In the meantime, know that your photos grace Chris's 'Wall of Fame' in his hospital room!

Keep those good vibes coming! The next 14 days are the real challenge!

With love,
Joyce

Chris and the Queen of Hickman's find a new position

Yes folks as anne was trying to get blood out of a stone This morning I was twisting around to show her the hicman's site. I was lifting the dressing and turning my head with both arms up and she said hold it right there. so I gave blood from the larger red line for the first time in over a week. She is my new hero.Woohoo!

I'm in the hospital but of course that is not going to plan. a patient that has been out came back today with a temperature so she took my bed. I;m not going home as I suggested, I am going into a shared room for a night. That bed was not vacated until late so had to be made up and we were waiting in a tiny anti room for a coupple of hours. I got in the room ans Joyce and Jo left at about 6:45. I'm down at the Net Kiosk typing this up.

Tomorrow I get to suck up three litres of saline in less that that number of hours and I have to pee out 5 litres. then they can start the malfluine. Can somebody that is a math wiz (not the ironic term considering the circumstances) please sdo the sums for me becuase I can't seem to shake (nother ironic term) the idea that this isn't going to end well. I can see what I'm going to be doing all morning while at the same time moving rooms and trying to nest in the new room Talk about marking out my new territory.

I wanted to tel you all that I have plans for how I can keep up shile int the hospital. I'm going to try to get up a shower each day and get dressed even if it's just back to tracki-dacks(cdn:sweats). I will blog when I can and walk the halls. Our friend Sue who started when I should have. was out for part day today ,gets a day pass tomorrow ans is out Thursday by the way Go on her. Anyway she was doing three turns three time a day so I'm going to work to that. Because I have this plan I have brought way to many clothes. Which have to stay in the many many bags that are filling my half a room! Look I really need my entertainment toys. Bluey think I may be just a tad grumpy if I don't get fully entertained. The good news is with the right equipment I can keep myself entertained for hours.....I mean ipod, TV, videos and computer!

Yesterday at the day clinic our new friend francesa said "yes she know a woman in Sydney that helps with Clydesdales every year at the show" Jo says " it wouldn't be maureen would it. Fran and her are mates and Jo has seen maureen a couple times with a bredder she knows in Sydney. talk about 6 degrees of separation!

Jo cooler her heals this afternoon reading the guide to what ai can and can't do after I get out. This kind of information in Jo's hands is never goo, for me anyway. she just ruled out breathing as I might get conaminants....oh and eating just got cut because of micro organism. She is taking some of the fun out.

Joyce, Jo and I visited with Sue for quite a while and she was looking good. Had a bit less hair than when I saw her just before she started on the 9th of February, but looking good and really excited about getting out.

more later
Chris

Packing and ready

It's Tuesday morning and I have chemo at 11:30 and then lunch out then check into the Royal between 2 and 3 this afternoon. All my plans to get ready early have evaporated and I have been running around packing. All the stuff I thought of taking is looming large so I may cut back and get Joyce to bring it in in smaller batches. It's a bit embarassing how much I have set aside. The help I got from Angela and Jacky&Tony with things to do have left me overloaded. I have coloring books, paints, puzzles, books, crossword and suduko for years not weeks. Thanks guys. I've got pictures from home, pictures I have printed up and pictures in a funky film strip like frame. I have party lanterns, PJ's in coordinating colors, slippers and shoes.....bags and bags full. I also want to take all my medical notes and books, the 'dr talker' of course. That's a excercise book that we have written notes about all the meeting with doctors, nurses, Judy etc. so that later when someone asked "what did so and so say" I can remember.

I'm still feeling no repeat no effects from the four days of chemo I have recieved, No nausea no ....other stuff. that they though I may have. Nothing. It's a bit scary that I doing this good. Now I'm not looking a gift horse in the mouth but still. Will shower shortly and get out to get Jo's computer sorted for wireless broadband, she is working at a distance and this in hampering her ability to get some stuff done. So I get to play computer geek one last time. Unless of course the hospital needs some work.....hhmmm.. I may take my multi tool just incase.

They have discouraged my thoughs of taking a piece of piano wire to fix my catheter. They definitly put the boots to Gene and Jo's idea of hooking me up to a 'gurney' to blow it out. Shoes actually started telling us how to turn the body so that an acidental air bubbble in the cath can be sucked out without passing throught the heart to lungs. Little bubbles are okay I've watched several working their way down my IV and into my body. shoes says there are a few things they will try when I'm in the hospital to try to get the fibrin flap off the end of the cath. But it may be that they just have to jab me for blood tests every day! As a techy, not having my device working to spec and then jabing me is adding insult to injury. Sheesse.

Just saw larry shirt Joyce pass by.... watch for commnets with photo's shortly.

more later
Chris

Great way to start the day

Just opened this email from my old high buddy Jim and his wife Irene.

Hi Chris,
Irene and I are posing in our "Larry" shirts to send some positive energy your way. We would like you to post it on your blog, and challenge others to get out and find a "Larry" shirt to wear for you. Let us all bring on the power of positive couture.
Jim & Irene

How about that!

I go to chemo at 12:20 today. had a good morning so far visiting with Jo and Gene and getting some mail opened, We have a movie afternoon planned. Just got a great uplift from famed Opera Diva Jacqui Mabardi my sis in-law-in-law. and looks like we get to see her and Karim for tea.

I go into hospital Tommorrow for 4 weeks.....maybe I should pack today, as well, because I want my own PJ's and not that hospital gown ( see "Whats that in the road? a head?"). I can't go through that again.

I feel pretty good this morning no nausea no ...other stuff. Just find I'm drinking lots of water to try to blow up my veins to allow the Hickmans to bleed. Maybe today is the day.

thanks for all the emails, lovely cards for Joan and Ang. Kristie's funnies, shinny's comments, dan's Hola!
thanks. don't forget the larry shirt photos. Trev I know you have some good ones.

I have emails now from Oxford, London, England; Willemstad, Curacao; Mexico; Sydney, Brisbane, Buccan, Hervey Bay, Australia; Grand Prairie, Victoria, Calgary, Kelowna, Vancouver,Kootenies Canada, Seattle, Tacoma,USA and you know what?.... our people live and vacation in some pretty nice spots!


more later
Chris

Saw Chilli again this afternoon

Me and my dog.

Visited Greg and Anne's with Jo and Gene and the Mullers. Had a lovely lunch and visit. Saw shiny ride Della and that was impressive. She finally has a horse that her feet don't drag on the ground! It's very neat to see her on this good size Clydesdale. and Della appears to be able to learn anything and has a good start in her training.

The apt is rollicing with Bev and Jo and Gene and Joyce's laughter as I type this. Gee this is nice. I don't feel any poor effects accept that I had to have a nap late this afternoon. Of course I'm not drinking.

I had day three of fludarabine today at 8:30 am. feel great. Still didn't bleed but more on that later.

got to go laugh with the gang.

More later
Chris

I'm an Individual Just like everyone else

As requested for comparsion purposes 'oldmebear'.

Our new friend Crazy Nurse But Not The Crazyiest Nurse, with the coolest glasses said this to me today, as she shoveled another cocktail down the tube. Me and bluey thought that it warranted a mention, even the title spot, in a blog. P.S to CNBNTCN, keep the good lines coming. It take a whole village to write a blog.

Speaking of the tube (All Ahead Full please, Mr Scott) My tubes have failed to bleed for the second day running, flush just fine but not the other way. Those of you that know me know that I hate any device that fails to function as it was designed to. Unless of course that failure is a direct result of my trying to alter the design specs at the point of consumer use. Then we just try to hide the sucker and hope no one notices. But that is another twenty or thirty stories a year that I hope Bluey doesn't discover. She has this way of picking up the no longer functioning item and just looking at me with the "I thought you were fixing this" look. Anyway I hope that if I get really flat, not the barka lounger flat that we get in the chemo chairs, but hospital bed flat, I can get the blood flowing again.

Went to see the Wild Hogs after treatment. It was okay but a bit standard Hollywood. Ate a very nice Vietnamese lunch and walked a bit in Southbank. I watched teens cavoting in the pool and realized they weren't born when the pool was built! The bouganvilla in the arbour is filling in very nicely.

Notes: for those of you having problems posting feel free to yell at your computer, slam the key board then send the comment, not the computer, to me at chrisolin22@hotmail.com and I'll post. Thanks to Dan for his spanish entries that's really going out there for the team. By the way Dan since we are still in drought please consider a vacation here soon.

I don't reckon I use much aussie slang but Dan wants tranlastions. The preceeding sentence was ....I don't think I use much Australian Collequial terms but Dan wants translations. Bluey thinks that the very funny typo I had, where the previous word dan was replace in the second instance by 'head', wasn't that funny. But now it's just 'cute' I going downhill with the writing. I better stop while I'm a head. Anyway if any of my Candian readers, come to that the Austalians too, that want a word tranlated can just submit the word in the comment section. Also all medical questions can be asked via comment or emailed to chrisolin22@hotmail.com. If I get stuck for an answer we'll Just ask Dr. Muller. ;-)

Happy Birthday Regs!

Please raise your glasses with me, no your right arm, foerarm vertical...yes that's nice, in a toast, all together now ..."I'm an individual".

More later,
yeah we have Jo and Gene visiting, trips to Buccan, more chemo, packing for the hospital ,It's a full life.

Chris

I believe in the Power of Positive Couture

In the sound of a tinny racetrack sound system "They're off". Yes I have on board about 250 ml of science's best cocktail for what ails me. The infusion took 1/2 hour but don' you know that the Hickman's did great for inflows but wouldn't bleed today. So I got a jab in my arm for my blood test and that took a bit extra. I may be a little down a quart in fluid or there is a little flap over the hole but no one seems worried so I won't be either. They'll have another go tomorrow.

My blood test today had about 20 lines of data and all but about 5 were red (meaning values outside the normal range) many of them are high so that is good as the treatment will make them drop. This begins my obsession with the daily blood count. In the end that will say when I go home so apparently the patients eagerly await the results. Makes sense, I guess but I have never seen so many red lines. Perhaps there is something wrong with me after all........naahh. Nothing that can't be fixed with a little cytotoxic drug!

I made notes.... where are they. Oh yeah from the last post. the schedule and 'happy today'. from my doctor talker book...power of positive couture, High School Chris, and meeting Shoes.

So I have decided that I'm going to be "that guy in the Larry shirt". Why? It’s all about the power of Positive Couture. Bright on the outside Bright on the inside. It's working already as a traffic guide. I started with a nurse that was going to get me started while my 'real nurse' was just coming back from lunch. When the 'Real Nurse" rocked up she said she had been directed to (say it with me) "the guy in the bright shirt". It has cause a couple of laughs so far, and who knows, may even prevent accidental nursing if I am this easily identified. "Please state your name, your birth date and what color was you last larry shirt." Picture this.... one nurse says to the other "take this choclate cake to Chris and give that other guy the enema". I want that nurse to KNOW that Chris is the guy in the larry shirt.

So Happy today.... yeah I just wanted to go on an on about how strange it was to wake up excited about starting Chemo today. It was, I guess, just that we have been waiting for a bit now and it's exactly four weeks delayed so I had a spring in my step. but that was a bit weird feeling as I didn't seem to be nervous.

Oh and as an aside we had to do another of those heath questionnaires and it seemed harder to do cause they seemed to be asking about my hyper (activity...well yeah) and heart flutters (when Joyce is around). "Real Nurse" (Liz) was a bit of card herself. Although I should not of called her baadd, while she still had a needle in my vein.

Oh how am I going?

Good thanks, just a bit sleepy from the pre-med of a mild anti nausea drug. A good latte seems to have nipped that in the bud.

Now the schedule. It was fixed in my mind by Judy last night get your pens out. today 9th fri Fludarabine outpatient;10th Sat fludar out;11th Sun fludar out; 12th Fludar out; 13th Tueday Fludar out THEN check into hospital between 2-3 pm; 14th Wed Malfluine in-Patient; 15th thur rest day in; 16th Fir Transplant day. That makes today Day minus 7 by my calculations but Shoes wrote in my chart that today was minus 6! He may be forgeting rest day or I have it wrong or whatever. more later on that.

After the chemo we saw Shoes and he's all smiles. I stop the Platelets drug, halve the steroid drug till check in and 'get off the turps" .......After all those are little "Bundy Bears" all over my shirt (yes look closer) it's even in the Bundy rum color scheme. He probably thought that I was so happy to get started I was going out to celebrate with a few jars. But no.

Lastly, for this afternoon's posting. Joyce came into the lounge from the computer room yesterday and said that it was a good thing we met later as she wasn't sure she would have gone out with 'high school Chris' ! I was not fazed by this comment, as she would have been in line with the majority of the girls in high school! I blossomed at Uni!
She seems pretty happy now.

more later

day minus seven and now counting

Here we go. It's werid to be so excited about starting Chemo. I poped out of bed this morning after Joyce let me sleep in a bit by slipping out quietly. I was very chipper. Ww have had a quiet morning, I made a fancy brekky and I sunned a bit with the bandage off. We are trying to get some sun on the wound to help keep the bacteria at bay. I figure every little bit helps.

Answered emails from Rick and the madderns.

Itunes and Mac are great. My sister Melissa need a very bizzarely titled song for something by Friday. I was able to gift the song via email transfer of the file, legally purchasing the song, for 1.69 in less time then it took to compose the followup email asking her if she got it!

gotta go more later on what Judy said about the process and more on how weird it feels to be happy today. but Joyce is popping for Maccas the first in about ten days! Woohoo.

more later
Chris

Just for fun

Thought you might like to see the Highschool Chris (thanks Jim)

The Eve of Infusion

Well I'm here and so is the computer.... hmm........what to write......hmm.....

It's 10 in the morning, I go into the Mater Medical Clinic tommorrow at 12:20 for my first bag of Chemo. Appearantly, our new friend Troy, the nurse that flushed my lumens (I love typing that) Says that I come in each day, get a blood test then the pharmacy makes up my coctail based on the results, then they infuse me with it. It only takes a short time to do the infusion but I should be prepared for a two hour stay as the waiting time for results and then the pharmacy takes a bit. The two guys that shared my room at the Mater Private while I was sorting out the infection and rash, were both on Fludarabine and they were not having any problems. They matched me bite for bite at meals. They had naps more I guess, but that's okay. So I'm guessing I'll be good. I hope I'm going to feel okay afterward because we just got an invite to Carnaval Latino at a local performance space. We have a great neighbourhood!

Jo has said that we are living it up down here while we wait. ...Well yeah!

Ret Wright was here last night and had a good visit. She's off today. By the way, Alicia you are supposed to be on the top of the horse. Hope you are feeling better soon. Had a really good long discussion to fill Ret in on how I got here and what happens with the cells in my body. Did you know that my blood type will change to that of my brother! My inmune system is totally tied up with the blood cells and wil have to be started from scratch.

Mary Ellen called to check up and may be here next week.

Jim continues to be a great coorespondent, Hi to you and Irene. I've got some new joiners still. Thanks for checking in and emails of support. Hi to Serena, Thomas, Kyle, Nicole, Travis, Regs, Nate, Cory and Devon.... I know you are there so push 'new message' and copy this into the To: field. chrisolin22@hotmail.com. Come on you Children of the Computer Age! Email me and just tell me what you are doing today.

I'm feeling a little wookie in the tummy, think we got some bad milk for the coffee yesterday. Joyce is over it but I had a restless night, but feel better this morning.

Quiet start to the day then we are taking dinner out to Greg and Anne's to visit with all and Chilli. Probably the last time, for many many months that I get to lick her face!

More later
Chris

Visitors 2

Yesterday Anne dropped by to drop off stuff for Shinny's overnighter. She is up to her neck in conferences, summit meeting, sorting people out, tonnes of paperwork and then she has to go down to the mine and shovel a ton and a half of coal before she gets to bathe in a puddle, go home to her two by two room and get 20 minutes sleep..... And tell that to kids today (say it with me) and they don't believe you. Sorry Anne it just turned itself into a Monty Python routine. Sometimes I just can't control the Muse.

Anne Maddern and her daughter and maybe husband? are coming by today.

Shinny came after her class at Uni last night. we had a great dinner and visit. We are such poor hosts she had to bring her own barrel of Quick. This is now a weekly thing and will keep us grounded in reality, as she is very smart and fun.

Speaking of smart and fun Ret Wright is do this evening. She drives from Hervey Bay every Wednesday to take a uni class for her doctorate. this is the first of many sleepover visits we hope.

Just an update I may have been unclear in my use of language. All the docs here call the chemotherapy leading up to the transplant ‘Conditioning’. My protocol is five days of Fludarabine served up daily as an outpatient at the Mater Medical Clinic starting on Friday the 9th. Then on Tuesday the 13th I'll go in for one day (Wednesday?) of Malfluine then transplant on Thursday the 15th.

Thanks for all the emails including my sister Melissa with great news and Chelsea with news of about two hundred friends and colleague at school.

Thanks for all the support
More later
Chris

I don't want anyone to be missing out...so...

Here's a post even though there is really not much to tell. Oh there's a visit from Mary Sue Ellen. Mary Ellen came to see us on Saturday and we persuaded her to come up to our local for lunch. It was pretty good and we had a good long visit finding out how Wal, Caitlin, Thomas and Gabe are. As a nurse Mary Ellen has provided us with tons of information and reassurance so far, so a visit with her is fun and smart. We are very lucky to have the Mullers in our life.

Oh and there's the trip to the markets this morning. Joyce was anxious to show me the organic markets every Sunday morning. We were there at 6:30, opening, and the competition was fierce! Who knew that the greenies of the world are killer marketeers. Anyway we were home with our goods by 7:00am! We lingered over coffee then went up to a new (for us) restaurant in our little precinct, called Butter Bistro; great brunch. Then we walked along the far side river walk, caught the ferry back to the Riverside Markets and were back home again by 10:30! We have just been hanging out, a little lunch and reading until now.

Oh and there's a visit from David and Susan Lewis Friday evening for cocktails. They were really welcome. Bev joined us for the first part and their Daughter Bridget came to pick them up and visited for a bit. They arrived by ferry. We love that we are so close to such a great convenience.

Saturday was filled with reading and lounging.

WE have an appointment with Shoes tomorrow at a TBA time also to get my three lumens flushed and heparinized. sounds way cooler than it is. At least there is no discomfort of any sort.

Will clarify the actual transplant date with him at that time I guess.

Great to hear from Rick, Alicia, John the cuz, and my old pal Jim. and of course that fanactically terriffic typist Shinny, JoJames, Regs, Melissa and Kathy, and Ellen SL thanks.

P.S. If anyone finds a Guinea Pig answering to Tuxedo please post. There may not be a reward but letting a little girl know her project has not ended up flat would be so reassuring. i personally think that the horse helped in the prison break.

PPS confused? you have to read all the Blog not just my posts, there's comments and profiles and other blogs it's a cornucopia of texting.

More later
Chris

Just Cruisin'

Just taking it easy today. Going to the Mabardi's for dinner and to see our dog Chilli. It's great to hear that she is doing so well with them and that she seems to be happy and healthy. But I sort of thought she would miss us a little bit!

Cuzin John: I had probs uploading photos too. The solution I found was to use Photobucket.com. Create an account and upload to the photo album there, then use the URL for the photo to put in the Blogger page.

Not much news at this point so I won't burn web space. Except to say that my sibs are terrific and I couldn't find a greater group to be working for us all. thanks Kathy for your leadership on the legal/financial front, For Melissa who keeps me in awe of her "people" skills and to Rick for the big gift when needed. Thanks to you all.

more later
Chris