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.

Here. I. Am.

Hello!

Time flies doesn’t it? I had not even started back to work last time that I updated this blog and here it is April 15th 2010. In 1 day it will be my one year anniversary from the day I received my stem cells back. I can still taste the lemon drops I sucked on as they pushed the vials back in to me. I vividly remember how high that they elevated the bed so I could lay prone as they injected my line. I still remember thinking. This. Is. It. The final step. I did not cry…but I wanted to. Other than a few precious memories I want to obliterate 2009 from my mind, my psyche, my soul. 2010. Ahhhhh, now this is a year with a happy ring to it for me. One year. A lot can change in one year and a lot can stay the same. I have changed and yet stayed the same.

I am stronger; mentally, emotionally. I am more grounded, more logical. I still have dreams but more fears as well. I temper this with my Gemini personality to imagine hard but maintain a solid reality. I have learned to be more okay about things that I cannot change, to ‘go with the flow’ a bit more if you will and be more aware of the blessings in my life as opposed to the experiences, persons, etc. my freewill cannot change. Seriously, who has the time to fester about things you have no control over? My focus is on the things in my life I do control. I focus on the fact that I hold the reins on what I want to put into a relationship and what I want to get out of it, on my work-life balance, on my evolution as a healthy person.

Spiritually, I have moved/shifted somewhat on my views or perhaps more accurately shifted on the strength of those convictions. I am not as faithful to my belief in karma. Bad things happen to good people and vice-versa. It is sad and unjust when that is the case but that is Life and for the most part the world seems to tip toward good things happening to good people. Also, 2009 positively reinforced my faith that THIS (the here, the now, the beginning and end of my days on earth) is not IT. I will not, can not, define what else that there is but I know there is something else because in those days when in my darkest heart I worried that 09 might be my last I knew that even if I left my loved ones, I could not, would not, ever truly leave them behind.

Physically, I am in a stronger place. The results might be hard and slow to notice but I have committed myself to a fitness regime that I have been faithful to since January and though to look at me the results are not dramatic; I am proud of what I have accomplished. Last year I could not walk more than a flight of stairs, my lungs were tiny restricted balloons, my core weak. Now I can run 5k on the treadmill faster then say, a lame camel, and am building stronger muscles and a stronger attitude.

And so, Here. I. Am. In the middle of a life that I never wanted interrupted in the first place. …and happy to be here!

With gratitude,
Carey

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

October Update

Hello Everyone,
It has been quite a month, appropriately one with many things to be thankful for.
I had my doctors appointment at Thanksgiving and my blood tests all came back normal and the external check of my nodes showed no abnormalities. I am still in remission and ready to move back into the real world.
Co-ordinating with my doctor and insurance company we have come up with a back to work plan that looks like my employers approve of. I will be returning to work the week of November 16th. It seems so long in the making but now with a set date...oh my gosh! The time will fly by now I know...only a few more weeks and I have to remember things like computer passwords, how to wear high heels, what a forecast looks like and why I care about the price of oil! A tad nerve racking but also much anticipated! Also, my doctor has already booked me for blood tests and the all important CT scan in January so I am confident that he shares my vision of diligent follow-ups.
Thanksgiving always means something to me. I am hokey that way. I really look around and count my blessings -this year even more than most. I was able to share the turkey day with wonderful family feeling so grateful to them and so many for their kindness and support these last nine months and look forward to what I really think will be a bright and happy future. I hope you all had a similar experience over that week-end.
Take care everyone!
Carey

Adrienne

Hello,
If anyone is reading my blog this morning, please take a brief moment to close your eyes and send a loving or thoughtful prayer out toward Nevada, to Alison and her family who have had to make a heartbreaking decision this morning. Alison, her blog is listed on the left of my page, is this amazing mom who is a member of an on-line support group that I am a part of. She is a consistent pillar of knowledge, fight, support and love for us all. Her daughter Adrienne has been fighting Hodgkins for over 12 years - yes, 12 years - and today they must take her off of her vent and let her pass. Her family and medical team have done everything possible for her. To whomever or whatever you may pray to or plead with, please ask to surround this family with love and comfort.
Carey

September Update

Hello Everyone,
It has been a while. I have found myself at the computer multiple times over this month but drawn a blank as to what to say or how to say it. Life is bordering on normalcy and that is a good thing.

My Health
My stamina is building and it is almost surprising to me when I am rendered with a sudden light headedness or instant lethargy. I take it in stride though and lie down and rest. Still, I am progressing and very happy with said progress. Only one issue seems to have crept up on me; it is a pins and needles feeling or numbness that I am experiencing quite frequently lately in my arms and legs. I think it may be a neuropathy issue brought on by the chemo which is quite normal apparently but I will speak to my doctor about it.

My Hair
My ongoing nemesis (it’s a girl thing, I guess). Well, my mom was right. My crown no longer looks like chemo-head; more like a really short cut - which in a way isn’t great, because it looks like I planned this look…ummmm - definitely not. True to form though it is growing rapidly so by this time next year I am looking forward to a nice ‘bob’.

Life
September has had some great highs and lows. Hayden has turned five and I am simultaneously so proud and yet wistful of the years that have past. I don’t know if I will ever be able to experience those baby years again. He started Senior Kindergarten this month and it was and is momentous, of course I teared up – I know of few moms who don’t!
My Nan passed away shortly after Hayden’s birthday and it has been a blow to our family. Up until a few weeks ago she was spry and chatty and still the same ol’ Nan to talk to. We will miss her and love her always.

Honoured and Inspired
Two very special people in my life have given me the greatest gift. Both have organized teams and are participating in two separate events to battle against cancer in my honour.
Phil Lamere has organized Team Carey as he has for the past several years and he and his team are running the Toronto Marathon Relay for Princess Margaret and his team is being sponsored by the equally generous and kind-hearted Richard Boire. Thank you, Thank you. The run is on October 18th and pledges are accepted via Phil Lamere for the team – there is not a web link for pledges but you can contact him or me if you would like to donate.
Another event very near and dear to my heart is the Light the Night Walk. It is held on multiple dates and occasions throughout the year and Sheryl Luckie has organized a team for the event on October 3rd; the team is called Carey’s Angels. Light the Night directly benefits The Leukemia and Lymphoma Society and Sheryl is walking in Montreal for me and so many others. You can click right here on Light the Night to learn more and/or to offer a pledge on-line to Sheryl please click HERE to go directly to her pledge page. Thank you Sheryl and team, again I am so honoured.
These special people and their dedication have inspired me. I am setting a long-term goal. Next year I plan to run a leg in the Toronto Relay. I will train through the year with Pete, and I will constantly think of Sheryl and Phil as I do so. I have put this out there in to indelible cyber-space so I am truly committed (or committable depending on whom you talk to!).
A very fine fall to you all. Remember to cherish those you have around you - we are all lucky for those in our lives,

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

Bits & Pieces

Hello Everyone!
A couple of entries ago I mentioned that some, well let's call them ‘odd’, events/persons entered my life during the whole hospital in-patient process. You know; the bits and pieces of life that make it both exasperating and humorous in the same moments of time – these are a few of those particular events/persons that I would like to record for posterity - I hope you enjoy them as well…

B&P #1; GOLUM
Okay, this incident occurred the day I had my remaining hair shorn from my head. The nurse who did the job was amazing – I am not referring to her shearing expertise but more so as to how kind she was about the results…she made me feel pretty okay about ‘my look’ as I left my hospital room and went to the common room where my parents and hubby awaited me and my head (we go hand-in-hand per se)…
In the common room also sat a lady visiting her mom on the ward. She took in my new look and after my parents left and it was just me & my husband sitting there she proceeded to tell me her personal experience with chemo-inspired baldness. Now, I am paraphrasing but basically her tale was of her friend who went through chemo a little while back and that on the day she first saw her friend bald, ‘she cried and cried for her’ and felt so bad for her because her bald head reminded her family of that awful creature named Golum from the Lord of the Rings tales and they nicknamed her that!!!. So, there I sat, freshly cropped, thinking that I now too am a living, walking Golum and hoping my friends reactions were not to ‘cry and cry’. What a lady – open mouth, insert foot! After she finished her speech I literally sat with my mouth kind of gaping at her and made a quick headway back to my room, where after thinking about her audaciousness, had a good laugh.

B&P #2; ANNA
Ahhhh, dear, sweet Anna… I had a couple of roommates during my hospital stay prior to getting a private room and my favourite was Anna. Anna was not an oncology patient. The poor lady, bless her, actually had a heart failure incident that night before her very large 80th birthday party but there wasn’t space in the cardiology unit so she became my roomie. Little, sweet, 80 year old Anna spent half of her time looking out the window and rating the construction workers physiques and the other half trying to persuade me to break out of the hospital with her to hit some strip clubs down the way in St. Catherines. I kid you not. She was awesome.

B&P #3; CO-Ed
I made history at Henderson Hospital. A very special roommate of mine, and I, both deserve a placard or something equally notable, in our humble opinions…
It all started with a strange notice on the hospital walls. It read that the hospital had initiated a 6 week trial where they were implementing co-ed rooms for better occupancy and billing practices to the insurance companies…yadda, yadda, yadda…I do not remember all the itty-bitty details as it certainly was amusing but in no way related to me -so I thought. Ha-ha. Enter the Hospital Coordinator. A bouncy, cheerful, determined and word wise lady who told me of a young man who needed to get in to the hospital right away [Okay], and there were no rooms available [Uh-huh], and without a room his treatment would be delayed [Why are we telling ME all this?]…and I had an empty bed beside me so would I volunteer to be roomies???? [Ikes!] Sooooo, with that, what on earth could I say but yes??? (He was asked the same line of questions he told me…i.e., would you mind rooming with a girl???) Low and behold, a ½ day later my new roomie is a dude named Antony! Good guy…nice guy…but a guy!!! What the hospital only told us after the fact was that we were the FIRST and only two patients in the whole trial period to date to agree to this strange new world!! It was only for a couple of days and he really was a gentleman but I must say that sharing a room a là old university-roommate style but with the opposite sex was definitely a strange experience. Kudos to us for being so liberal!

B&P #4; A REALLY ODD (Bad) DAY
Okay, I laugh at this one a lot. It did not take me long to put it into perspective and enjoy the surreal-ness of this particular day, really it was not even a whole day, it was just a morning but, oh-my-gosh; WHAT a morning…
So I begin about 7am-ish. I am in the itty-bitty bathroom in my room, the one I am sharing with the dude. The hospital has this insane idea that a person AND an IV pole can fit comfortably into a 3X4 foot closet already occupied with a toilet and sink…laughable. Oh, and I must mention the bi-fold privacy door with no lock. You see, that is important because that was what was yanked open at full force at 7am by a hospital orderly with me in there – Ikes! She yelped, I yelped louder as both my privacy was invaded and an IV pole was slammed into my knee and from that day forward she learned to knock! Mortifying but a recoverable incident soon to blend into a forgettable day if not for the quick-on-that-incidents-heels moment when the other kindly orderly brings in my breakfast tray with a cheery ‘Good Morning, Sir!’. As a new Lady-Baldy, I was not amused.

We could end there. Sure. But this is ME. I am a magnet for the ridiculous at times. So, my next prize moment occurred about 10am. Antony was gone for the day for treatments and tests so it is just me in the room. This man walks into the room and asks me, ‘Do you need to go to the bathroom?’ Ummmm, huh? Well, this is the maintenance man and the reason he is asking is he has to remove my bathroom door but before he does, ‘do I need to go?’. Okay, this can’t be real I think. Ummm- why, dear man, do we have to take away my washroom door? Is there a shortage? Are we rotating them? Well, apparently they have to take the whole door away for the rest of the day to add little pull handles to them and…blah, blah, blah…I am too kerfuddled with the thought of not having a bathroom door to care about the details, so OFF it goes to bathroom-door-maintenance-world and I am left to contemplate which bathrooms in the unit have doors remaining should I need one…
Good enough for one weird day huh? There’s more! Of course there is more! My dad comes to visit and he is sitting at the end of my bed just before noon when he looks at me and says ‘An old man just went into your bathroom’. (You know, the one without a freaking door!). Now, just because it doesn’t have a door does not mean it is publicly accessible!!! You have to walk into my room and then into the washroom, which the old feller does. And sans-door, he proceeds to tinkle. OMG! He then shuffles out of my room back into the hall…with me never hearing a flush – ugh! Now bless his soul, this is a really old guy and we are sympathetic, so my Dad goes into the bathroom to make things as they should be but he quickly exits to tell me the old guy has tinkled EVERYwhere. Like the toilet wasn’t even a passing thought for aim. This bathroom has become a curse!! A vortex for the wacky I tell you! Some rapid depressions of the call button got the whole room sanitized efficiently and thoroughly thank goodness but, honestly!!!!
So, that is it. An amazingly odd 5 hours in the life of me on this strangely bad morning.

I hope you have enjoyed these random experiences of mine as I took a look back in time. I personally chuckle when I recall them…or at least smile wryly.
Speaking now in the present, I can tell you that I am feeling better as this time goes by and though still in need of many good sleep hours, I am regaining more energy and able to get out for some periods of time which definitely helps me feel back a part of the human race.
With humour, hope and my best to you all,
Carey

Good News!

Hello Everybody!

So, I called my Hematologist on Monday to get my CT results appt; they called back Tuesday morning and had an opening for 11:15am. This of course made me nervous...why were they getting me in so fast? But the results are super-positive!

Never have I been so happy as to be defined as 'unremarkable' but in the world of CT scans and lymph nodes this is a very, very good word!

Dr. Mcphaden stated that as far as CT findings would go this is about as positive a report that I could hope for and I should feel very comfortable with it. Basically all of my nodes have shrunk down to 'teeny-tiny' [note: teeny-tiny is not a medical definition :-) ]. In my paratracheal region (think along the throat) my largest node is 8mm which is well within the boundaries of normal (range is up to 1.2cm), all of my organs are completely normal in appearance, as is my lung and diaphram regions, my periaortic (upper chest where I had my 2nd biopsy in Dec.08) has a 'small residual node' of 1.2cm (and any nodes are considered normal in this area up to 1.5cm), so all is good - my Doc thinks that as this originally was a rather large mass in my chest the residual is just scar tissue, etc.

Happy, Happy - Joy, Joy. I am...relieved...and elated...to say the least.

My Doc is very agreeable about my position on monitoring in the future (I would like CT scans every now and then in addition to bloodwork and chest x-rays as my bloodwork pre-diagnosis showed nada while the scan proved growth). So, in 6 months time he will re-scan me for comparison and prior to that (yesterday, and again in 3 months) he will review bloodwork for any indicators. As of now, I am in remission.

Remission. It is a beautiful world. Ask anyone who has been told it and the loved ones who look forward to it. Remisssssssssion. Fan-bee-u-tee-ful-tastic!

So, my Doc scheduled another 3 months before re-assessment thus I see him again at the end of September; we will then again discuss my energy/lethargy progress, mental concentration, etc. and go from there. Until then I continue to regain energy in baby steps and now, without the worries of 'non-success of SCT' on my shoulders, I can breathe much easier.

I hope for you all that your spirit will feel as light as mine does today. Thank you for all of your blessings, good thoughts, support - it worked!!!

With gratitude,

Carey

Checking In...

Hello Everybody,
I had my scan on the 16th. Very uneventful. The wait was 3.5 hours due to emergency and hospital patient bumps...excruciating staring at the powder blue walls of the hospital as there was not a magazine to be found in the whole wing until they came by and distributed some about 20 min before my scan...they were new and had some good gossip in them-- Jon and Kate might separate!...but I digress...
The actual scan only took 5 minutes. I have to make an appt. next week with my doc to get the results - will post again when I have a date and time.
Other than that, not a lot going on in the household - I had a very low key birthday obviously...lots of cards and well wishes, thank you! Hayden is enjoying his summer - he is outside a lot more with walks with his Grandma to the pond to see the baby ducks and goslings and playing outside with Pete; chalking the driveway and playing mini-basketball. His daycare even had a day-trip to Bronte Park the other week that he really enjoyed.
Pete has 99.9% finished putting in a deck off of the kitchen (quite beautiful) and he put out the patio furniture including a nice lounge chair for me to get in to. I was out there a couple of days last week but it was soooo chilly I was cocooned in blankets and did not last long. The weather definitely seems to be getting nicer so I plan to enjoy some resting time out there in the weeks to come (with LOTS of sunscreen to protect my head of course!).
Take care everyone!
Carey

Scan Booked

Hello Everyone,
Just a quick update: My CT Scan has been booked for next Tuesday June 16th at noon. This is my 1st scan post-SCT. Fingers are crossed...
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

Part Deux

Hello Again everyone!
Time for me to get this blog up to date isn’t it? I left off on my last entry getting discharged from Henderson…yeah! Or so I thought…
The Week-end:
Unfortunately, my week-end home was pretty awful. My stomach/intestines were not functioning properly so I could not retain any fluids. This was supposed to be my ‘free pass’ week-end where I would feel pretty good before all the chemo side effects from the week prior kicked in full force. Nope. I spent the week-end extremely nauseous, extremely dizzy and in bed the whole time.
Some may recall that after my ‘free pass’ week-end the expectation was to go to the hospital every day for blood tests, counts and infusions if necessary. There was an 85% chance that by the Wednesday I would be re-admitted to hospital. I wanted to be part of that 15% who made it past that date but in fact by that Monday my body had had enough.
As I got ready to go in for my tests that Monday the 20th April, I blacked out in the shower and came to on the tile. Luckily I had not been able to shower standing for a while so I had only slipped from my shower chair to the floor but still… I blacked out a couple more times getting ready and by the time I did get to the hospital I was on my knees in the elevator so not to fall over. It was my arch nemesis again that ‘done me in’ – dehydration (blasted!&##!).
The back Nine:
So, bingo-bango after only a measly 2 days at home I was re-admitted, hooked up to the IV again and pumped with fluids 24/7 and antibiotics via IV every 8 hrs. The other chemo side effects eventually kicked in and after a couple of days I was also receiving my anti-nausea meds by IV on a regular basis and had a butterfly needle inserted in my upper arm for direct morphine injections due to throat sores. The good news is the throat pain only lasted about three days, it really could have been much, much worse, but after those 3 days I didn’t need another shot of morphine.
I did have to get several blood (3-4?) and platelet (2) transfusions while in. The platelets were an adventure. I had crazy (and admittedly scary) side effects. I got a rash and welts on my face and torso and then the whole left side of my face down to my shoulder paralyzed. I could not feel anything in my face as though I had been shot up with extreme doses of novacaine. Once identified as a reaction they immediately IV’d me a nice large bag of ‘Benadryl’ and eventually all the face numbness and welts subsided. The next transfusion they gave me the ‘Benadryl’ prior to the platelets.
Home:
After several days my blood counts started go up and after nine days I was safe enough to come home and did so on April 28th. I came home with a pretty bad cough so on oral anti-biotics for about a week and a half. This eventually evolved into a pretty good cold but has since morphed back in to a tolerable cough. My doctor basically said my body for the next while will take longer than usual to fight back. Perfectly understandable.
So, where am I now? Not physically I mean but status-wise. I am on a really dull roller coaster. By that I mean very few highs energy wise… I roll along the track at a pretty slow pace and quickly go down a swift hill into deep fatigue. My first weeks home were about 70-90% sleep. Last week I was doing pretty well and my sleep during the day was more like a couple hours at most and mainly lots of resting but this week already I am sleeping about 3-5 hours a day and still getting a full nights sleep too so my little coaster has been out of gas this week for some reason.
I am doing really well from my transplant doctors perspective and my care has been transferred back to my regular cancer doctor here in Oakville so that is amazing medical progress and I am so pleased. My Oakville Hematologist will soon book my CT scan and that will confirm that my treatments were a success – he will monitor me regularly again for the next 5 years.
Okay then. That is the medical update. Pretty dry stuff. I have lots of bits and pieces and funny stuff to relay but this entry is already several miles long and my brain is about to turn off…so, until next time…
Thank you to everyone for your most awesome support-
Carey

Finally an Update!

Hello Everyone!
It has been a while, hasn't it? Over a month since I last posted but my focus, fingers and energy level have not been aligned until now to write an update.
So, where to begin? Well, I actually did end up spending just shy of three weeks at the Henderson Hospital, since then I have been home recovering but let’s break it down into ‘segments’ shall I? -->
The 1st Seven:
I entered Henderson on the 9th April and after a quick baseline chest x-ray was immediately hooked up to the IV for fluids to get me all plumped up for the next week worth of chemo. Once hooked up, the fluid part of the IV ran 24/7 for the next 3 weeks (save for 2 days) except when the chemo meds were running so I basically was attached via two lines to an IV pole for 3wks – amazing what you get used to…it sort of reminds me of when you go skiing; you know, at the end of the day when you take your ski boots off you feel as though you are floating above the ground. That was what it was like when unhooked finally from the IV, free floating! It’s amazing what you get used to until it is gone. But, I digress. The next 6 days I had chemo. The chemo meds were only an hour or two each day but beforehand was the nausea and steroids, both by IV which took an hour or so and then nausea meds again after which were another hour and again at 8pm and midnight each day so all told the infusions were about 4-5.5 hours a day. The rest of the time I spent just hooked up to the fluids, getting my temperature+blood pressure+heart rate monitored every 4 hours until midnight and daily blood draws each morning at 4:30am, and; napping, watching TV, flipping through magazines or (best of all) with some fantastic visitors. Daily my MIL brought Hayden in for a visit and it was an instant mood lifter for me. His visits were not too long (he is 4 and hospitals are not that stimulating) but I got my Hayden fix and he got his mommy fix and it was wonderful. By day 5, which was the Monday, I had my head shaved. It was time. My nurses were letting me know that I has leaving hair bunnies all through my floor as it floated away from my head and me, my bedclothes, my sheets and my floor were covered in my shedding so ‘Off with her head!’. Results = a really chubby Demi Moore in GI Jane but at least I don’t have really funny ears or large dents in my head…
Day Eight and Nine:
Re-infusion Day. The day I received my stem cells back. My re-birthday on April 16th (Happy real birthday Claudia) The process consisted of me lying in my bed with a nurse monitoring my vitals after every infusion on one side and the transplant coordinator giving me lemon lozenges and cold compresses on the other. Another ‘freeze team’ of three thawed my cells one bag at a time (eight I think?) and then drew them into big fat syringes. They would then give the syringe to the doctor who pumped each through my pherisis very s-l-o-w-l-y. Lather, rinse, repeat eight more times and in about an hour it was all said and done. No major side effects due to the nice nausea meds and Ativan (stress reducer) given before hand. It went really, really well.
The next day my blood counts were low due to the chemo finally kicking in with them so I had a couple of bags of blood transfusion and was discharged home that afternoon.

Okay, definitely more to come – my 2nd round in the hospital and my weeks so far at home- but for now consider this my 1st installment about all that…I am tired and need a little lay down now for a while. I will write more soon to get this all completely up to date.
For now let me say I am recovering and slowly but surely am on my way to better days
With such happiness and hope,
Carey