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.