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.

The Beginning...

Hello to all,
I thought my first post should circle back to the beginning...4 years ago at the time of my first diagnosis of Hodgkin's Lymphoma...

My “story” begins back in 2004 when I was about 2-3 months pregnant (yeah!) I started to have horrible back pains that intensified to back seizures that lasted through most of the rest of my pregnancy and occurred multiple times per day; it made for a very hard pregnancy. From start to finish I was told that “all women have back pain” during pregnancy…I was referred to a chiropractor and basically spent much of those 9 months in pain and frightened/sad as no doctor really took me or my husband seriously when we described the episodes (guess they thought I was a pregnant drama queen!).

Well, after the birth of our amazing son, the lower back pain reduced majorly in episodes but did not go away completely – it was also “discovered” during my delivery hospital stay that I was extremely anemic. I stayed in this mode (with supplementary iron pills) through the first four months of my Hayden’s life (happy but very tired with sporadic back pain – attributing all of it to being a new nursing mom with an almost 11 lb newborn @ birth!) until I found the lump on my neck in January 05.

After a couple of biopsies, the doctor called me one day in late February while I was home only with my baby and told me over the phone(!) – “the results are back and not that we thought any different (Ummm, I did! Or at least was hoping!) You have cancer…. So, I was officially diagnosed and staged as Hodgkin's 4-a. Those “pregnancy” back pains I was having were tumours growing on and into my pelvic bones. They were being pushed onto the bone by my heavy baby and grew into it creating many, many fractures (the “seizures”) through my pelvic bone and touching off all sorts of nerve endings! Of mild relief was, that though there were many of them (my neck, chest, abdomen, back, pelvic, with liver involvement), – no post-chemo radiation was required.

My chemo combo was ABVD and it worked well...I began chemo in April 05 that lasted to Sept 05 (11 rounds) and my family was amazing with their love and support through it all…I actually missed my final round as I had bleo toxicity and landed in the hospital to treat my lungs with steroids for a few days. At discharge, I was prescribed further steroids to be weaned off and after a few months of recovery time to regain much lost energy and my immune system, I went back to work in Feb. 06. All was well - I was in remission. And it lasted for 3 years.

Flash forward to August 2008 and doubts moved in ...But, that is for my next post.
Thanks to anyone reading this and checking in with me.
Much love and take care.