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

All my bags are packed...

(Sung to the tune 'Leavin on a Jet Plane' known to some by John Denver others by Peter, Paul and Mary and still others by Chantal Kreviazuk)

All my bags are packed
-for week-long chemo!
I'm standin here and I'm ready to go
I have to finish up so to cancer I can say good-bye!

This is the last stretch;
Its almost done
The nurses are waitin
I'll so be reborn!
Already I'm so excited I could fly!

So wish for me and pray for me
Think kindly each day for me
Hold happy thoughts as through treatment I do go!

Cause I've hitched my wagon to the chemo train
Back to real life I will soon be again
Oh friends I'm ready to go!
Cause the 16th will be my re-birthday
and oh! what a happy day-
I've beat this thing and I will tell it sooo!
Ohhh-
I've beat this thing and I will tell it so!

(My apologies to John Denver et al)

Here I go; 10 days in hospital - I will have no access to a computer and may be in for up to 3 weeks...thanks to everyone for all your support. Here I go for the long haul but I have so many people raising me up I am forever grateful...

Take care everyone...
Carey

Stem Cell Superstar!!

Hi Everyone,
Okay, remember the woman from last week with the outrageous 79 count of...something. Well, that something was her White Blood Cell count. Hers was incredibly high, the nurses said they would be happy with any count over 2, well my WBC came in at 37.4. Totally respectable -and actually a safer count apparently than the 79. The 79 gives you 'sticky, gummy blood', okay guess I do not need that...
So, that number, the 37.4, does not make me a superstar but here is what does:
I think I explained this in an earlier entry but to refresh; when you go to have your stem cells harvested you need 2 million minimum stem cells harvested to go through with the BEAM and re-birthday. Also, you need a minimum of 5 million cells to not have to go back for a 2nd day of harvest - -well, I came up with 7 MILLION stem cells on my first day! Yeah for me! I am soo happy with the news; most other steps are, well, steps to get through, this one had a goal and I SMASHED it --yee-haw!
Now, technically the body does what the body does and I had nothing mentally or willfully to do with this gianormous number of cells (I even asked the nurses on harvest day if there was anything I could do to squeeze out more cells and they told me if there was they would be telling everyone [yeah, I suppose]) --there isn't any BUT at the end of this statement. Okay, a little one...'the body does what the body does... but I am happy about it nonetheless.
Now, on to the BEAM. I am admitted on April the 9th and start my chemo, BEAM regime, on the 10th. Apparently the effects of all this chemo is delayed about 1 week so I will be a little tired/nauseated in the hospital but only slightly so - my biggest hurdle in fact may be boredom so if you are in the Hamilton area (no, Northern Ireland and NB is not what I consider 'in the area') and feel like a 15 min drop by I will be in Henderson on F3...as I said to a friend via email - just ask for the grumpy bald chick...
Speaking of bald, still has not happened as of yet though I am shedding like a Labrador retriever, I am told any day now but there is still mucho-mundo hair on this noggin...
Asta de leugo (sorry any Spanish readers on the spelling -correct me at will!)
Take care and warm regards,
Care

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

#3 down...

Hello Everyone-
Just a quick update- My bloodcounts were good on Wednesday so my chemo went ahead Thursday. My next chemo will be next Thursday the 5th. Some dates for next procedures have changed but I'll update those when I have more energy and my 'official' letter with dates from the hospital.
One new additional date is a CT Scan on March 11th to see if the four chemo's have put me into remission to read me for the SCT...fingers crossed everyone!
I am not certain why the are doing the scan after the 4th and not the 5th chemo but that question arose after my last meeting with my Dr's so I'll ask them the rationale next Thursday.
That is it for now.
Thanks for your support and with warmest regards-
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

Staging and my Treatment Plan with Dates!

Hello Everyone!
Yesterday I had my follow up appointment with Dr. Fraser & Dr. Sandhu @ Juravinski. They are re-staging me at 3-b, out of the 4 stages. The 'b' means that I am symptomatic (with the pain, itching, hives). Staging means more the 1st time around as it determines the number of chemo's or radiation, etc. For me, it is simply to establish the baseline to measure my next series of scans against.

With this news in hand, we were finally able to establish a treatment plan with dates! This is the WORKING PLAN. If after any of my 1st four chemos my blood counts are too low, then everything can be delayed a week each time...
All that being said, I am so excited to have a plan!! I am now working toward something! I have goals!!

WORKING PLAN (the 'highlights', i.e .excluding dr. appt's, bloodwork, etc.):

• FEB 3: CHEMO #1 - The GP of GDP
• Feb 4 - Feb 9: Decadron (oral steroid) - The D of GDP
• FEB 10: CHEMO #2 - The P (cisplatin) only
• FEB 24: CHEMO #3 - The GP of GDP
• Feb 25 - Mar 2: Decadron (oral steroid) - The D of GDP
• MAR 3: CHEMO #4 - The P (cisplatin) only
• Week of March 9th: Repeat CT scans (maybe gallium too)
• MAR 23: Pherisis Catheter surgery (day)
• MAR 27: CHEMO #5 (new drug) - Cyclophosmophide
• Mar 27 - Apr 5: Neupogen injections daily
• Apr 6 - Apr 7: STEM CELL HARVEST
• Apr 16 - Apr 22: BEAM CHEMO daily
• APR 23: RE-BIRTHDAY! Stem Cell Infusion/Return
• Apr 27 - May ... Daily testing @ Juravinski...
• May 14: Milestone day. If I make to here after stem cell return, then chances of re-hospitalization are slim!

So, there it all is. If I stay the course then treatment is complete by the end of April and I can begin recovery. IF I need a couple extra weeks for blood counts to rise, transfusions, etc. then treatment ends mid-May and my 'safe' day is @ the end of May..recovery June onward...

I am so relieved to be getting underway! My lower back pain has been increasing (new, stronger meds prescribed yesterday) and my docs tell me that even the 1st chemo session should help relieve some of that.

Onward and upward!...

Thanks to all reading for your support,

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.

New Scan

My baseline CT scan has been scheduled - tomorrow the 23rd @ 11am.
This is good. Finally moving forward.

The SCT and other items of note...

Hello Everyone!
I ended my last post advising I would relay the actual stem cell transplant in in my next entry so here it goes...

To remind you, the last step pre-transplant is the BEAM chemo that kills off my stem cells and bone marrow - once this is complete we are on to 'DAY ZERO'.
This is a most fantastic day - in the SCT world it is called my Re-Birthday! (yeah! Cake and Balloons for everyone!). On Day 0 (zero) I am re-infused with my previously frozen (and now mostly thawed) stem cells via an IV process. The stem cells "know" where they belong in the body. They move through my bloodstream to settle in my bones. This is where the cells will begin to grow and produce new red blood cells, white blood cells and platelets. This is called engraftment.
The transplant process (not full engraftment, just the infusion) takes about a day and the next day I am a new person! (Haha) I am discharged on Day 1 and sent home for what is normally scheduled to be the weekend to rest. This part came as an enormous surprise to me! All my readings had indicated a period of isolation but if all goes well that is not the case! THAT really knocked my socks off -the thought of being isolated from my son was devastating but now it is not an inevitability. We are pulling Hayden from daycare to keep him as germ free as possible to mitigate any risks.

Now here is the tricky part - as I said I am able to go home on Day +1. The way Dr. Fraser has explained it to me is the big milestone date is Day +21.
Starting Day +3 I have to go to the hospital every day for blood work, perhaps transfusions and various follow ups and tests. Between Day +1 and Day +21 my doc advises that it is most likely a when and not an if that I will have to be admitted to the hospital. Some example reasons are fever/infection, IV pain medications due to GI tract infections, dehydration, etc. The determination of how long I will be hospitalized is when, on the way to Day +21, I land in the hospital. For example, if I end up in the hospital on Day +1, then I am there for the next 20 days but if I make it to Day +18 then I am only in the hospital for 3 days (barring anything crazy-major). So you can tell by my examples that once I am admitted to hospital they will not let me out until Day +21 - those are da' rules.

And what happens after day +21? It takes about six to 12 months after the actual transplant for recovery. Recovery? But you're cured? All better right? Well, yes & no. Hopefully and god willing I am cured but my physical being will be somewhat of an exhausted, depleted, immune deficient (but happy!) disaster as I recover my energy and health bit by bit. I am told to look for fantastic milestones like getting to and from the bathroom without 8 or more rests on the floor in between...or getting down the stairs without sitting down on each one, then every other one, than every 5th one...
All that being said (and with a knock on some real wood) I am made of pretty hearty stuff so I plan to meet each challenge with determination and success!

On another note, keeping to part 1 of my Plan -the 'Protect what I Have' bullet point (as the chemo's pre-SCT are unkind re: reproduction). After a couple of weeks of treatments on an ASAP basis yesterday, the 20th, we were successful in creating two potential embryos for the future. Not as good as the 6 anticipated but better than zero. Who's to say what will happen with my/our future but for now there are two small (very small) hopes that I can think about. Nice to know.

Currently, it has been a week since I had my hospital appt; "the meet & greet". Since then I have been waiting for them to book my new CT scans so they can have a proper baseline to compare against as I go through treatment to determine relative success. I am still WAITING for that scan appt to be booked. Once it is, a few days later, we should get this SHOW ON THE ROAD!
As I always say to Hayden - 'Let's Rock n' Roll Kiddo'.

With thanks to those reading this in support of me-
Carey

The Treatment Plan - Pre-SCT

Hello to all,
I had a great meeting on Wednesday (the 14th) with my new doctor - the transplant hematologist. His name is Dr. Fraser and he is very experienced with this whole process. He completed a 4 year specialized fellowship after medical school to become a clinical scholar and teaches hematology at McMaster University. He and the Transplant Co-ordinator, Carol, explained the procedures that I would be undergoing these next months and they were very patient with this patient and my pages of questions for them!

MY ROAD TO REMISSION PLAN
In order to get to the stem cell transplant, which is the final step in this whole process, I will first undertake multiple blocks of treatment to get my body into a state of readiness:

Block 1: Chemo regime. This first chemo regime is designed to get me in remission or as close to that state as possible - without achieving this, I cannot undergo the tranplant. This chemo is called GDP which is an acronym of the 2 drugs and 1 steriod I will being taking over a 6-8 week period. The cycle is intended to be Day 1 Gemzar and Platinol which are the chemo drugs. Day 2-7 is the decadron steroid and then if my counts are high enough, day 8 is chemo again - if my counts are too low another week is added - then 1 week recovery, 1 week rest and REPEAT all one more time. Then we will do scans to see if this worked. If so then we go to -->
Block 2: Pheresis Catheter installation. This is very similar to a Hickman catheter. Some may recall during my first bout I had a PICC line in my arm. This was a tube inserted in my vein and up to the vena cava. I had a few inches of line outside my arm and this was the access to draw blood or administer the chemo drugs. Well, the Pheresis, is very similar accept it would not snake through my arm but rather at the top of my chest, with the exit below my collarbone.
Block 3: "Cell Motivator" I will have a day of chemo with a drug called Cyclophosphide (sp). This drug is sort of a bully that pushes stem cells out of my bone marrow and into my blood stream. This will be followed up by 10 days of injections of a drug called neupogen in hopes of stimulating my marrow to produce massive amounts of stem cells. Not that any of this will be pleasant but I am told this is distinctly 'discomforting' due to the pains in your bones as your marrow is hyper-stimulated...
Block 4: Harvest! This process lasts about 1 to 2 days. I am hooked up to a machine kind of along the lines of a dialysis...my blood is filtered out of me by this machine and whirled through the machine to separate the stem cells from the rest of my blood and the remaining blood is filtered back into me. Lather, rinse, repeat about 6 to 8 times and the goal at the end of the process is to have a very large baggie of stem cells (ideal 5 million per every 6kg of body weight) to be frozen for later...
Block 5: Chemo regime 3. This round directly follows the Harvest. The drug cocktail here is extremely fierce - 10 times more powerful then my ABVD regime from 05. The combo is called BEAM. Very potent. It will be administered to me for a week straight and the goal with this is to kill off all of my bone marrow and cancer cells. Kill! Kill! Kill! :) . This is a long week but the ultimate goal is just around the corner...

I will explain the actual Stem Cell Transplant time line in my next entry.

Be well and with much gratitude,

Carey

Another Chapter

Hello to all,
So how did I get from there (remission) to here (relapse)?
Well, it actually started back in August 08. I was approaching my 3 yr remission anniversary and my 3 month interval appt's with my hematologist were about to move up to 6 month intervals.

Pete and I wanted to be certain at this point that we could truly move on with life so at my Aug. appt when my doc once again confirmed my blood work was just fine, I requested a CT scan. That way I thought, all doubts/fears could be put aside. Well, low and behold the results came in the 1st week of September and they showed node growth.

What does node growth mean? Hodgkins is a cancer of the lymphatic system and it flows through your blood stream and lymph nodes - those nodes are located throughout your body; your neck, behind your ears, underarms, many,many through your torso and right down to behind your knees. My little nodes on my last scan in May 06 had grown enough to raise a flag by Aug 08. Those nodes are all located primarily in my torso..in my chest, abdomen and lower back/pelvic area mainly.

My doc then ordered a gallium scan and a biopsy on the largest lower back node to get some conclusive results. I had both completed over the next few weeks and the results were inconclusive, what does that mean? More in a moment but 1st a few words of explanation...

A Gallium scan is much like a CT scan except a few days prior to the scan they inject you with certain radioactive isotopes [for that nice nuclear glow] that gather to abnormal cells on the scan, "hot spots" if you will. A biopsy can be fine needle, CT guided, or surgical - this one for me was CT guide. This is where rather than a fine needle drawing out a sample of the node, a needle with a 'clip' on the end (as the name infers) clips off a sample of the node for examination.

My gallium scan lit up - basically telling my doc that I had relapsed. However, the biopsy results were negative (yeah!) but unfortunately my doc was pretty certain that they had just not clipped the right spot since the node they were going for was very deep in my torso and right along my spine, so difficult to reach/pinpoint.

What next (believe you me, I asked that question to myself over and over). It was decided by my doc to wait 3 months from the original CT and rescan - if further growth was noted, then re-biopsy for (hopefully) conclusive results. I'm certain everyone by now knows what came next. A CT scan in November annnnndddd...Bingo! - more growth. This time no fooling around though. My doc sent me to a surgeon to see if he could surgically biopsy a node in my chest. He could, and did so on Dec. 18th in a procedure called a thoracotomy+medianoscopy . I have a delightful scar now right across my throat where he went in but after months of waiting, on Jan 5th 2009 my doc called me at the end of the day (at work!) and advised me of my relapse.

Garbage is what I say, absolute garbage. This is not what I had mapped out in my life plan but to quote a man I used to work for and admire to this day, "it is what it is". So, I move forward with great support from family and friends into this next chapter. I put together my new plan to get through this armed with information, empowerment, decisiveness, confidence, love, optimism and hopefully gratitude and grace.

What is my plan? (1) Protect what I have (2) Get rid of what I don't want (3) Start anew (4) move forward

• Protect what I Have: Pete and I are going through steps to give us some choices in the future for our family. Nothing is guaranteed but by the end of next week (the 24th or so) we should have about six little embryos wearing sweaters and touques in a freezer for a few years...maybe more on that later should I feel compelled to give details. Also, have to protect my teeth (transplants are hard on them too) so dental appt's, plus legal appt's and research! research! research! on my next steps
• Get Rid of what I don't Want: That's the chemo part. I'll find out more on that tomorrow when I meet my new transplant hematologist at the Juravinski Cancer Centre. How many rounds, what the drug combo will be, how long each will take, etc.
• Start anew: That is the Stem Cell/Bone Marrow harvest and re-infusion part. I will definitely provide a run through on that process in another post - once I get confirmations on everything tomorrow
• Move forward: After the transplant I need to acknowledge to myself that I will be tired, weak perhaps, and my immune system will be in its infancy. However, I plan with each day to accumulate some strength and get to get on with what all this is about -the joy of loving my son, my husband, my family, my friends, my life.

Thank you all for following my journey.

Much love and take care.