A good week!

Hello Everyone,
Well, it has been sort of a non-eventful week. I had my 12 hr chemo day on Monday and it went very well. I was in a room with Pete and a Nurse and one other patient and her friend. This patient is one week ahead of me and thus was harvesting her stem cells that day so it was interesting be in the room with her, speak to her about her experience and also watch the machine at work. She was a very calm lady working away on a quilt with her friend and the impression I had was that the stem cell process was not taxing.
The big machine that does the actual harvest reminds me of a Slurpie machine at the 7-11 - mainly because of the bags of different 'flavours' being displayed at the top: platelets = sprite, red blood= raspberry and stem cells = 5-alive (how fitting huh!?!)
Now I was told by her and her nurses that she had an absolutely amazing blood count of 79. This number seemed to impress everyone quite alot though at the time I did not have the heart to ask 79...what? But apparently that is the number for me to beat next week! (The nurses said that as long as I had a 2 they would be happy...)
We were also told during my 12 hr day that my CT scan showed really favourable results in my cancer/chemo to date; 'dramatic reductions' is what my transplant co-ordinator stated. The ideal would have been 'no evidence remaining of disease' but I will take this good news and run with it...
Other than that, the neupogen shots have started and so far Pete has not received any wallop to the head so that means he is doing a fine job giving me the shots. No bone pain yet - a little nauseous but I have great meds for that.
I'm looking forward to a nice week-end - good health and beautiful weather - what a nice mix!
Take care everyone and all the best,
Carey

This Ship has found her Port...

Hello to all!
I have been ported! That's is the common lingo for the apherisis catheter apparently - 'the port'. If you want to be part of the cool crowd in oncology, you have to have a port! :)
The procedure was really a non-event. (Tylenol 3's on Wednesday and Thursday took care of most discomfort issues) I was there @ the hospital at 7:15 am and home by 1pm but the actual surgery was really no more than a 1/2 hr - the beforehand time was getting an IV and getting set-up on the table and post-surgery was just to monitor for a while to make certain I didn't fall over when I did get up. Not due to sedation as I was awake through the whole thing (because they need you to hold your breath a couple times when they put the tube in the artery) but due to the versed they gave me. For those not in the know, versed is a nice little stress relaxing agent that makes all your worries go away - you feel very 'zen' as it flows through your veins and for a little while afterwards too. I was told not to sign any legal documents for 48 hrs as I would not be considered 'of sound mind'. The original benchmark was pretty low on that to begin with (haha) but I took their advice and chose not to sign over Hayden to the gypsies who rang my doorbell later that night...
Signing off for now - my very best to everyone - With lots of love:
Carey

What a difference a week makes!

Hello Everyone!
Happy St. Patricks Day!
Well, I have had a really great week! My last chemo was over a week and a 1/2 ago and I am feeling really good! Every afternoon I hit a bit of a mini-wall and could definitely nap and my nights are definitely earlier than even my 4 yr old but other than that it has been such an uplifting week!
Pete and I were able to take Hayden to the Ontario Science Centre 1 afternoon and on Sunday Hayden & I (Pete was working) were taxied to Brighton by my Mom and Dad to finally see my brothers new house and then to my Aunt and Uncles house for a nice family dinner.
Yesterday I had my bloodwork done and all counts are great to proceed with getting my Pherisis Catheter placed tomorrow. I am nervous but also excited because this means no more IV and blood needle pokes!!! Since every attempt to insert an IV or draw blood from me results in two or more tries before success, I have become a human pin cushion and this catheter now means all blood draws and my next round of chemo's as well as the stem cell harvest and return will all be through the pherisis - no more needles!!! I have to learn how to flush it out daily and then go weekly to the VON for dressing changes. The alternative is to have home care come daily to flush it out but then I am bound by their schedule, this way I do not have to wait for anyone.
So, catheter placement tomorrow and then the big 12 hr chemo on the 23rd (Happy Bday KRB), 10 days of neupogen and then the stem cell part which has been moved forward by 1 week. I get my stem cells harvested the 2nd and maybe if more needed on the 3rd as well - I then am admitted to hospital on April 9th and if all goes well get my cells back on the 16th.
Thanks to so many here and afar; family across the ocean in Ireland, across Canada in NB, all around me here is SW Ontario, Oakville, and of course such great friends with their encouragement - you have all made such a beautiful difference in lifting my spirits.
My best to everyone-
Carey

Weeble

I have written this post now about a 400 times in my head this past week and mainly at about 3 or 4 am as I lie with sleep eluding me. My in-my-head version has been at times sheer ‘brilliance’ and more often probably quite manic as I deliver to myself version after version…
Please consider this post ‘personal’ in nature, speaking more to my emotions than to the cadence of appointments, etc. so if unappealing, please, similar to a train wreck – look away, move on to my next entry when its time comes…
Firstly, just in keeping with timeframes, my chemo #4 was completed on Thursday and now on to the biggie on the 23rd – the 12 hour infusion day with baldness to follow 14-16 days later. So far my hair has held up well – the 1st 4 chemo’s really were no match for the old forest growth on my head!
Back to the topic at hand, this week I Weebled. Big Time. And well over, lilting to the left I’d say… I hope you are familiar with the Fisher Price toy – it is what I am referring to here on a variety of levels. Superficially, I am now the non-plastic version of a Weeble-Wobble, these 5 weeks and most especially Dex steroids have taken their toll and through the swelling, puffing and manic compulsive eating that these steroids plummet your psyche into I am remarkably similar to the old school toy. I am hoping this look is somewhat endearing to more than the playschool crowd, doubtful.
Really, more importantly, I became an emotional weeble (on sale! Just in time for Easter!). It started through chemo #3 with the steroids building in my system. Just a few days after that chemo when I usually sleep-sleep-sleep, it was gone. Replaced with this small flashlight like feeling behind my eyelids – a sort of 2nd pulse that wouldn’t go away and left sleep by the wayside – even when I am sleeping I still feel ½ awake -a stream of consciousness still beating through my head. By Mon/Tues, I felt as though I was measuring sleep in moments rather than hours and on Wednesday I did not sleep at all, day or night, going into my chemo, the end of my oral steroids but a full bag of IV steroids on that Thursday. -Many, many hours to think. So, so tired but the pulse did not abate. My Doc offered sleeping pills on the Thursday but I declined for some manic reason opting irrationally to not put even more chemicals into me (seriously, dumb) and to let the ‘roids’ wear off naturally. Emotionally, I fell to a very low place.
The point of this posting – I tipped, Wobbled, and allowed myself to indulge a lot of feelings that I had be holding at arms length – and here is what I learned:
(1) It is OK to let yourself out of the box. I am proud that so many people think I have a great attitude about all this, or that I am brave (I am not), etc. This week I got scared. Scared of what I was going through, still to go through, and some long weeks ahead. I also got angry – at this cancer, at myself for not being in a better state to handle it, at my lost time and altered future plans and at some people around me for not crawling into my head and understanding all this. Lastly, I got lonely and sad – I insolated and therefore isolated myself from the people I am closest too and feeling wise that is a very lonely place. By wanting to be ‘tough’, I had weakened my own foundation but as I state on my profile, ‘I have my moments’ – I will allow myself those more often, they are cleansing.
(2) It is OK to mourn. No, I am not dying, I will survive this without a shadow of a doubt but I can mourn what could have been. Pete and I were soooo planning a far better path than what cancer has set this year on and as much as I have banked away some hope for that future my life has been altered and a new path set. Boo-hoo. Lots of peoples lives change on a dime and I am no different I do get that but beforehand I tried to portray an ‘oh well, we adapt’ attitude. That is true but everyone should be allowed to say, ‘I’m disappointed it didn’t all work out’
(3) The great mystery solved! – WHY Weebles Wobble but don’t fall down! The answer is of course, like the toy, elementary; a strong rounded base. Tsk-tsk! I am not just speaking literally of my bottom! I speak of my most true, solid foundation; my family, my friends, my ‘structural support’.

With gratitude and a more even keel,
Carey