Alice

Hello Everyone,
So, how do you make the rest of your days count?  Alice may inspire you...
http://alicepyne.blogspot.com/
With gratitude for my happy life,
Carey

If you need a reason...

Hello Everyone!
Actually, is anyone out there?  It has been so long since I last posted I am doubtful that anyone still checks in...
But in case there is someone still taking a peak...first, I am fine, more than fine and will update more on that in the very near future because I am full of news and views...
However, on a more serious note - I ask that anyone out there reading this today, please light a candle to send hope and light to a fellow warrior in this cancer battle.  Kirsten --> here is her blog --> http://www.cancersmancer.blogspot.com/  <-- Kirsten is an amazing woman who has been fighting Hodgkin's lymphoma with all her strength for many years now.  She and I are about the same age and she is also a fellow Canadian.  She is someone whose attitude and personality I would aspire to - aspirational and inspirational in her battles against the beast.  She has hit a very large rock in her path through this all and her family has asked, via her blog, that we light a candle to send her some comfort.
I am rocked by this turn in her life and will get on top of my pseudo-pedestal once again to say Lymphoma is a beast and if you have the opportunity to read Kirsten's blog I hope she will inspire you to lend your support in some way to kill the beast because if you ever need a reason, she and her story would be one...- give blood, sign-up for the stem cell registry, light the night, walk for a week-end, or..light a candle and send some love to those who continue to fight.
Thank you everyone.
Carey
Update (Feb 8,11):  Yesterday, on Monday February 7th 2011, the world lost a fighter - Kirsten passed away.  Bless her and her family.

Back to Work, Back to LIFE...

Hello everyone,
Well, the big day is almost here - I go back to work tomorrow! At the grueling hour of 10AM no less!!!. :-) Well, I am going back on a modified schedule to ease me back so I really do start at 10AM on my first day. I will work 3 days my 1st and 2nd weeks back, then 4 days and finally a full work week, both at reduced hours, and then back to the real, real world of full-time, full-stop, full-out work weeks...just a few sweet days before Christmas break! Phew!
I am looking forward to regaining this part of myself.
So, some of you may have noticed a trend here of diminishing blog updates as I have gotten better. This will only continue. I may update in a few weeks just to tell of my re-integration back to work and then again most definitely in mid to late January to advise on my blood-work and scans...after that I am hoping that real honest to goodness life will be getting in my way of continuing this blog on a more than infrequent basis... Maybe I will update on my progress to get run-ready for the relay next October!!
To all of you who have followed me on this most incredible journey this year - thank you for the healing and faith that you have infused in me. I carry it with me each day - it warms me, it bolsters me, it makes me proud that so many have such intense human spirits.
As always, with the utmost gratitude to you all,
Carey

The Good Kind

Hello Everyone,
Today finds me well. I slept until 11am after not having a nap yesterday but it seems every two or three days now I forego a nap and then sleep in the next day - progress! My day-sleeps are also shorter, again progress!
As some of you may realize my current obsession is my hair, or lack of. Per my last post it is coming in again pretty well but it is horrifically grey. I have been trying to keep it 'natural' to see how it will look longer and 'salt and pepper' but I said to Pete the other day I am getting sick of looking like his mother. Not his actual mother mind you - she is young and blonde, but like I could be his mom! So, I may break down and dye it soon, we'll see.
So as you all can see my life is going pretty swell. I am recovering smoothly and steadily and count my lucky stars.

I would like to post on another subject that has bothered me, admittedly irrationally at times, since my first round with this cancer. It is what I call 'the Good Kind syndrome'. I bring this up now after all is said and done for me at least (knock wood), because a young man, 22 years old, who loved life, his girlfriend, his family, going to school at UofO...; he died on Sunday. He died from Hodgkin's Lymphoma. He was a good soul but that did not matter to Hodgkin's. His mom and family did everything that they could for him but that did not matter to Hodgkin's and he died. His name was Eric and I know his mom Kathy through a cancer support group. Bless him and bless his family - for them, there is no 'Good Kind' of cancer. For the others I have known who have passed, Shannon, Dave, Sarah, Anne-Marie, to name a small but meaningful handful, it was not the good kind.
Imagine if you will, a lottery where the odds are one in five that you will win!! Imagine that if you win once and enter again that your odds now go up to 5o/50!! That is Hodgkin's. About 15-20% do not make it, long-term. The odds change dramatically if you 'win it' again.
I write this now because there is the myth of the 'Good Kind'. It has been said that because of its treatableness there have been few significant advancements in treatment for the past 20 years or so. As though 1 in 5 is acceptable to the drug companies and researchers. I want every cancer to get to those kind of odds or better but in my Hodgkin's community there is a worry that progress for better results is being under-researched and underfunded in part because of its rarity as a cancer and in part because of this stigma of 'the Good Kind'.
I am not illogical, I understand that there are many other cancers where the outcome is far graver - but to me, and many other Hodgkin's survivors and the family of those who fought but had to succumb, calling Hodgkin's 'the good kind' almost lessens in others eyes what we have gone through, had to contemplate, the realities that we have had to face. It is cancer and what I am trying to say is that there is no 'Good Kind'. To be very, very ineloquent; it all sucks. Someday, may the odds improve.
Thank you everyone for your continued support.
Take care,
Carey

The Bet

Hi to Everyone!
Yes, the half a head that you see above is mine. This picture is from early June so at that time it had about 2 and a half months worth of growth on it. Now being late July, I have added approximately another 1/2 cm in length and it looks a bit more filled in at the front... I am nice and fuzzy and 'salt & pepper' in hue...
THE BET: My dear Mom is an optimistic soul and she seems to think that by Haydens Birthday, which is mid-September, that I will have as much hair on my head as her - ie. enough for 'a style'. I find this very doubtful but hey, what have I got to loose? Hmmmm...now that I think about it - there is no wager riding on this bet...I'll have to think of something to make it interesting...
I am writing far less frequently as my life consists of the standard 'day-to-day' interspersed with late mornings, afternoon naps, and various rest periods - medically/health-wise there aren't any major updates on me. Some wonderful personal highlights included Kel & Steve's wedding and a visit to the Lambie cousins and I thank Mom again for her support of me through these days so I could be there and she acted as Haydens primary caregiver so I could rest when needed.
I hope the summer is treating everyone well - even if it is a bit of a damp one - there are worse things than a little rain - remember that!! :-)
My best to all -
Carey

The Giving Spirit

Hello Everyone!
So, how many people does it take to save one life?
It can be many, or, it can be just one person…the right person – the perfect match.
For people in car crashes or... falling out of trees or... involved in a police type scenario, your savior may be a singular person. For people with severe medical conditions such as a cancer, it usually takes a team but even in the cancer world you are sometimes waiting for that ONE HERO.
For me, my life was definitely a team effort. If not for the multiple persons who donated their blood and platelets, I could have died. That is a fact. If not for the people who gave to cancer research in order for auto stem cell transplants to exist, I could have died. That too is a fact.

Thank you to whatever higher power there is that those people walk amongst us with a giving spirit. (And I recognize that the giving spirit does not just apply to ‘my causes’ but heck, those are the ones I am appreciating just for today).

Just before I had to leave work I sent out an email to some persons at my employer and in my personal life…aside for the ‘see you soon’ parts I wanted to send out a brief message about that giving spirit. Below are some extracts from my original email:

‘…Please consider giving blood. …Through this ordeal, I may require one if not several transfusions due to low counts – I probably will not receive ‘your’ blood specifically but there are thousands just like me out there who could benefit from this selfless act. …Please listen for local blood drives in your community and consider making a donation…or call 1 888 2 DONATE (1 888 236-6283).

Second, consider being a Hero. My stem cell and bone marrow transplant is autologous. …Others whose auto transplants have failed or simply were not candidates for auto transplants must wait and hope for matching donor stem cells. There is a national registry for Stem Cell/Bone Marrow donors. It is located at www.blood.ca or http://www.onematch.ca/. It is a…simple process on the …donors part and if someday you are a match – you will save a life. …Please consider this gift. The web-links <in bold blue font>, offers great information for you. Imagine that – saving a life. There is nothing more heroic.’

Robin Rocca (http://www.myspace.com/helprobinrocca) is a 28 year man from New Brunswick who has come to Ontario asking for just one person to save his life. That is all he needs – that one person. He has a blood cancer that is a cousin of what I had – leukemia. His cancer is aggressive and his family is not a match for him…neither is anyone in the Stem Cell Donor bank at http://www.onematch.ca/ either…yet.

As Robin explains:
‘OneMatch is a program through the Canadian Blood Services. And they do unrelated donor testing,” he explains. “You can sign up online at onematch.ca, and request to be a donor. And then what they will do is a swab kit in the mail. You basically swab the inside of your cheek to get a couple of cells and then from there they can get your [genetic] typing and they put you in the registry.”
If a person’s genetic typing matches up with someone who needs a donor, they can volunteer to donate their stem cells. The procedure is easy, and the stem cells are drawn from the blood and not the bone marrow. “What happens is I basically get infused with your blood,” Rocca continued. “They don’t have to go in and poke your bone marrow, or poke your bone and pull out stuff. They can actually pull it straight from your blood.”
For those interested in learning how to help patients like Robin Rocca can visit http://www.onematch.ca/ to learn about eligibility for the program and register online.’

The current data bank for Robin, plus approximately 750 other Canadians, does not currently contain their match – they are waiting for their match to register and become a donor to save their life. (If you are ineligible to be a donor or for whatever reason choose not, please consider giving blood and platelets the next time the opportunity arises).

Just think about it and click the sites to see if this is the type of gift you may consider giving. No obligation. P.S. Already some family members + friends have let it be known to me that they made them self part of the One Match list – thank you.

On another note/update – I am tired and continue to sleep and sleep and rest and rest but it is all good and I know I am healing and am happy that my turn of events has put my in the position of ‘survivor’.

With ongoing gratitude,
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

Vhat a week!!

Hello Everyone!
It has been quite a week - one I will wish never to repeat.
I feel rather epic this week so I will begin with "Whence last you joined me here at the blog' I was shaky but on the 'upswing' so to speak after re-hydrating. Late on the Wednesday however I started to develop a cough and by Thursday we were calling in to my med team as I was maintaining a fever of 101 and anything over 100 in my new world is a no-no.
So, I was prescribed an antibiotic and began that immediately. On the Friday I went into the hospital for more fluids but was still running a fever that steadily increased into Valentines day - another call into the med team on Saturday and a 2nd antibiotic was prescribed to take in tandem with the 1st one. Should have been overkill right? Nuh-uh. By Saturday evening instead of a great dining experience @ my brother-in-laws (Happy Birthday Mike - I bet Pete forgot to call you on Wednesday, huh?), I was running a fever over 104 through the night and alternating between drenching the sheets and freezing to death. As much fluid as I was trying to get into me, the fever was taking it away at a far more rapid pace.
I was awake for most of the night with the cough and difficulty breathing and by the time Pete's alarm went off at 6am I was so on fire I asked Pete to draw me a cool bath and I crawled in to the bathroom to get in the tub with some tylenol. The bath and the tylonel worked to cool me down for a few hours but by early afternoon my fever was back up again to 103 and my breathing was laboured so with Pete working my Mom and Aunt took me to emergency that Sunday afternoon.
The moment @ emergency reception that I told them that I was pre-stem cell transplant, they took a tact and care protocol with me that I can say would rival any top class care facility in this country or the U.S. Now, granted, there was 'no room at the Inn' so I spent three days on an emergency stretcher in their resuscitation room (isolated) instead of a hospital room but other that, I can only praise the doctors and nurses (other than 1, who I shall refrain of speaking of) for their skill, compassion and true caring for me.
As I just said above, I was bad off enough to be kept in until Tuesday, I was badly dehydrated as well as riddled with some infection so they IV'd me immediately and pumped 5 bags of fluid into me back-to-back-to-back (etc.) plus IV's of antibiotics every 8 hrs plus continued fluids. I was discharged Tuesday afternoon and placed on new doses of the same antibiotics as pre-hospitalization, just higher doses, until next week.
So, what does this mean chemo treatment wise? Well, I saw Dr. Fraser and Carol yesterday @ Juravinski and they are slightly delaying my next chemo. I will go for blood tests again next Wednesday and if my counts have rebounded and my chest is clear (cough/wheezing gone) then we will proceed with chemo on that Thursday. Otherwise they will cancel and defer me to the following week, which will bump everything by about a week in the calendar but c'est la vie.
Must say, despite the actual DAY of valentines being a total write-off (Pete and I aren't super mushy about that stuff anyways - you know us) I have to say it was a great week to see once again how much I am loved. Beautiful cards with thoughtful messages, roses from Pete, sweet cards/drawing from my son, - love was all around me.
Today, I was at a followup appt with one of the hospital doctors @ his office and in walked one of the nurses from the hospital with her son. Her name is Sheila and she hugged me in that waiting room and genuinely cared -what a great capacity for caring from a total stranger, amazing. Her son may be going through some medical problems so as you are so kind to say a prayer or think a good thought for me -please think of her and her son as well. She is the type of lady who deserves some good karma.
Thank you all for reading and supporting and Happy Valentines Week-
Carey

Round Two...Check!

Hello everyone!
I'm going to cut to the chase on this one - I had round two yesterday and can now check my 1st cycle off (round 1+2 = 1 cycle)!
My Sunday and Monday were pretty low. When I went in to the hospital for my blood counts on Monday I was quite dehydrated, shaky, faint and nauseous - which was all my own fault for not keeping up on my fluid intake. No excuses, it was just hard to drink when I was feeling bad so I didn't. Anyone reading this who will soon be on this journey - drink your fluids!!!
My Dr. ordered an extra IV bag (of fluids) for me for Tuesday after the chemo and I forced drank and drank until then despite myself and by after my chemo was feeling much better. I still have to go for another fluid infusion on Friday but have been ordered to drink-drink-drink or else they will make me get home-care to come in daily to IV fluids - and I don't want that.
Well, this is the day after the Cisplatin (The "P") and I got up and had some toast but now am feeling a little shaky so am going to sign off after this next paragraph and rest (Almost all I do now).
I just wanted to add a blog mention to my Mom Pat and mother in law Claudia. They have been cooking for Pete and I now since the 1st chemo and have taken care of our every need. Even more than our culinary needs - Hayden is so wrapped in their love, he is doing just great. Thank you.
Keep well everyone, take care,
Carey

Back in the Saddle!

Hello my blog followers (hehehe!)!
Just over these past few days I have come to realize how many people are checking out this blog for updates and I thank you all for your interest and support!
Treatment #1 was Tuesday and it was a long day. We had to get to the hospital by 8am so it was any early day but we were prepared with our bags full of (for me) magazines, books, writing diary, i-pod and granola bars and (for Pete) various snacks and all his study material for his captain's test coming in late spring (Go Pete go!).

As I said, Tuesday was long. Juravinski is a beautiful updated cancer facility but its partnered hospital hit its prime a couple decades ago a least - ambiance is not a consideration BUT the nurses were friendly, efficient and the room was not filled so Pete was able to sit with me the whole day. The only 2 nasty bits were, as usual, they could not find a decent vein in me so they blasted a few more in my hands (I am dreadfully curious about what they will do this Tuesday!) and one of the chemo drugs (The "G") was particularly 'spicy' so it burned going in for most of the time but again the nurses were compassionate and wrapped my arm in a warm and heavy blanket to relieve some of the sensation.
We finished up before 5pm but after getting enough pharmaceuticals to make a junkie proud over @ Juravinski were weren't home until after 6.
That night I was okay - able to eat a nice dinner and then...CRASSSSSHHHHH! Between the nausea, anti-nausea meds, kidney protection drugs, pain meds, steroids, etc. I have been in a blur until yesterday. On Saturday I was feeling tired but able to get a good decent shower and out of the house for an afternoon visit to the in-laws (Happy bday Derek!). It was good to get out for those hours as I had not even been down the stairs since Tuesday and my walls were closing in on me.

Today is Sunday the 8th and I am feeling okay. The weather looks fantastic so we are even going to try and get a walk around the block - something short to see how it goes. It's hard to describe yesterday and today. I am not sleepy anymore -just so very tired and distracted mentally - like I have chemo-ADD or something. My thoughts are fragmented a bit...it could be the steroids. My doc did mention they could effect your thoughts rolling around in your head (as in flickering from one to the next at lightening speed or zoning into my own dimension!! :) ).
Monday is my bloodtests and Dr.'s appt. to determine if my bloodcounts are high enough to get my next treatment. I will know if this coming Tuesday in 'a go' then.

Listen, to everyone, I have received so many kind emails and words of support and it is really helping me rally through this! Thanks - thank you.
Now, to get my lazy bum away from this computer and get dressed for that walk!
All the best to you all -merci.
Carey

Cheers to my Friends, Family, Colleagues!

Hi All,
I had my scan yesterday. Other than a prolonged wait due to emergency cases ahead of me - nothing eventful. I had them copy it to disc and will give it to Juravinski next week - no report attached and since I do not dare to try and interpret the results on the disc - I'll find out next week about the disease progression/baseline.

Yesterday the 23rd, was my last day @ work for some time. I am taking next week as vacation time to get some much needed rest and sort of 'decompress' in between appointments. It looks like since I had my scan yesterday I'll probably start treatments at the beginning of February so my medical leave starts Feb 2nd.

I really want to call out the great team I am a part of at work. They are small but mighty. I am speaking specifically of the trio in my department and their kindness and support - thanks for the great 'see you soon' breakfast and sweets-inspired 'afternoon tea'. You three (and 'our leaders') touched me.

As for the rest of my workplace - your thoughtful words and support are much appreciated.

My dear family and close friends - I am so appreciative of the normalcy of our relationships. I am still giggling with the girls, hanging with our circle of friends, or chatting about relatives, politics, whatever with 'the fam' and all the while wrapped in so much warmth and support. thank you all. You are each a gift to me.

With love - take care out there.