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

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

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

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

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

#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

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.

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.