Archive for December, 2012

Radiation day one

Friday, December 28th, 2012

It went well. Surprisingly it was one of the easier things I have experienced. No real side effects to mention as of yet. Just felt a little nauseated on the way home which might have been just motion sickness in the car for the hour’s drive home. The machine was quite elaborate and interesting and I kept my eyes open all the time. I kept my mind and my breathing in complete control. I visioned what the radiation was doing to the tumour and I also created a safety blanket inside my head that protected the healthy surrounding tissues. I am determined to conquer this battle. Rick and I joined our friends Kevin & Carol for lunch after my work was done at Save My Ass Inc. We shared our Christmas holiday experiences, had a yummy salad, of course lots of laughter was involved and our visit concluded with hugs. (my kind of medicine) I will go back again in 2 days for treatment number 2 which is scheduled for the last day of this fighting year Dec 31, 2012.

Worth the risks…

Wednesday, December 19th, 2012

So I thought I would have a two week break from the obvious, and my mind was almost getting there until today.

My radiologist called.

He didn’t have a nurse call or an assistant call.  He personally called me. 

I immediately thought it might be bad news when I heard his voice.  Testing and set up results must have come in…… is where my thoughts immediately took me.  He is calling to cancel and tell me we can’t go ahead.

Wait a second, why am I all of a sudden thinking negatively?  It was only a few seconds until I snapped back into reality and tuned in 100% into the present to actually hear what he called to discuss.

Another gift arrived to me today.

Some may not see this news as a gift and perhaps a huge gamble instead.  I have decided to accept this gift graciously and not look back or second guess my gut instinct.  Really, do I have much of a choice?  Let’s face the facts.  The alternative is death.  I choose life.  I choose positivity.  I choose hope.  I choose faith.  I choose to believe that this path was created for me to travel.  To prove what?  We will eventually learn that in time.  But no matter the outcome, I will pursue this journey with a strong will and determination and if it turns out not to be enough than I will accept that.

Radiation is still scheduled to begin three days after Christmas on the 28th.  Plans are confirmed that I will undergo 6 treatments in total.  Here is the update…

I will be the first person in the entire clinic to be undergoing the highest dose of radiation ever given with this particular type of treatment. 

How and why? 

He explained that many factors contribute to the delicately computer calculated dose.  My anatomy, the location and size of the lesion (tumour), risk assessment, etc., etc.   The tumour is localizable. 

Time to discuss the risks. 

This was the bigger part of our phone conversation.  Let me put it in short form.  The risks are because the liver tumour is in a major highway zone.  It’s near my spinal cord, near one lung and right up in the traffic of a major blood vessel (IVC – intra vena cava).

– risk of spinal cord damage (I assume permanent)

– risk of lung becoming fibrotic  (permanent damage)

– inflammation of a lung (which is treatable by steroids)

– low chance of bone damage and/or fracture

– low chance of vessel damage

– fatigue, fatigue, fatigue and other temporary side effects like nausea

Keeping in mind that this dose has never been tested yet, the doctors can only estimated the percentage of risk.

I asked him what the results have  been with previous patients receiving this newer type of treatment, with a somewhat similar dose.  He said the results either have been published or will be published very soon.  He explained that 60 patients in total from my clinic and a clinic in Michigan are what the stats are based on. 

50 – 60% of those patients experienced a relapse (cancer returned)   Future radiation to treat a relapse not likely a possibility due to damage of tissues, however other options may be available such as chemotherapy depending on case specific relapse, ie number & location of lesions, also surgery not likely an option

30% — no relapse after 3 years, optimistic and expecting outright cure.  This is very amazing to me as normal prognosis at this point before radiation is estimated 6 to 12 months.

He was honest and up front with me.  He said he himself was somewhat nervous but very optimistic and reassured me that I will be monitored very, very closely both during and after treatment. 

Am I nervous?   Heck yes.   Am I scared?  Yes and no.   Am I ready?  Yes!

Positive thinking equals positive mind and body.  

I am heading to bed for the night for some much needed pillow power.

Sweet dreams for a cancer-free future!!!

 

Happy RE-Birthday #3 !!!

Friday, December 14th, 2012

A survivor is a triumphant person who lives with, after, or in spite of a diagnosis or traumatic event.  Survivors refuse to assume the identity of their adversity.  They are not imprisoned by the constructs of a label.  Instead, survivors use their brush with mortality as a catalyst for creating a better self.  We transform our experience in order to further evolve spiritually, emotionally, phsyically, and mentally.  Our reality challenges us to go deeper.  Survivors cultivate an essence that will never be victim to a word.    (Inspired by the book of Crazy Sexy Cancer Survivor)

Fri. Dec. 14, 2012….I woke up this morning with a huge exhale, physical yes, but most importantly a mental exhale. It was exactly 3 years ago today that I woke up from an un-expected surgery and Rick was right there by my side holding my hand and he had to do the unimaginable thing. He was the one that told me those three dreadful words, you have cancer. Although I was just coming out of the anesthetic I remember that night so clear, like it just happened yesterday. I had no idea that night just how serious or how sick I was. I remember the next morning when my family physician came in to see me. I asked her “how bad is this?” She held me hand and said, “Karrie, it’s very bad, I am so sorry”.

Well enough of that scary talk and memories, fast forward to the present day and here I am! Feeling like I am still climbing a huge mountain, but I am alive, I am challenging those damn statistics and doctors are still offering me options.  I am a survivor.  What more could I possibly need or want?  Absolutely nothing!  Thank you to God, my family, my friends, doctors, nurses, specialists, modern technology, advanced new research, new cancer drugs and treatments, strangers that reach out to me and especially my partner Rick who deals with me and this cancer crap each and every day. Without all of you to be the wind beneath my wings to carry me through the tough times and the easier times I don’t believe I would be here today to celebrate this special day!  Happy Survivor Day!

I went to the cancer clinic 2 days ago to begin preparation for radiation to start. I had yet another specialized CT scan and several tattoo markings on my tummy to outline where we are going to burn this thing! The tattoos are only the size of a freckle, which I have an abundance of already. How boring. I was hoping for a big EFF U on my adbomen. The nurse says “this will sting as I puncture your skin”.  I replied with “are you kidding me, you see those huge scars right? This is small potatoes, no sweat”. She laughed and said she loved my spirit because she sees many patients that cringe at the sight of any needles. She said she especially liked the scar from my liver surgery. She called it the Big V for VICTORY. I joked back and told her the pressure was on, she has to do her job and get rid of this tumour for me. She promised to do her best and that’s all I can ask.

My doctor came in during the scan and lined me all up and assisted with the special mold that I will lay in to keep me very still. My arms will be above my head for each radiation treatment and I will not be able to move at all. Let’s just say the trial run was okay except for the part where I am totally immobile and here is where the itchy nose starts. Ugh.  The nurses are so nice, they scratch the itchies for me.

Well today is just another ordinary day and I am so thankful for that. I will be able to enjoy yet another Christmas with my family and then I start back to work at Save My Ass Inc. on Dec. 28, my first date for radiation and another new journey in this fight for life.

Life under construction…

Tuesday, December 11th, 2012

I am sorry if my absence from writing has you worried.  I am doing just fine. 

The last few months have been tough here at Save My Ass Inc.    When you are CEO of your own company, at times you have to put in a lot of over-time, some blood, sweat and tears. 

Chemotherapy had hit me hard.  I spent every other week in bed.  The side effects have been awful.  I am told that since my liver is not the capacity that it was pre-surgery that it just couldn’t handle the toxicity of the chemo drugs and other drugs as well.  Boy did it talk to me.  I have thrown up in so many places, like my driveway, Rick’s vehicle, the emergency department, the cancer clinic, the doctor’s office, my bed, the couch, the list goes on and who knows how many pairs of undies went directly into the garbage pail outside.  Yuck.  I wouldn’t wish the experience on any one.  

I wasn’t the only one putting in some over-time.  I am so grateful to every one that worked along side me.  My Mom scheduled many days off work to take me to treatments, a few friends took me to treatments so I could give Mom a break, and of course, Rick.  Numerous times he would empty and clean my puke bucket, bring me cold cloths for my head, he would be woken up in the middle of the night to the awful sound of me getting sick and he would ask if I was okay.  Every morning on chemo days, before he left for work he would feel my forehead for fever and he would also check for my pulse.  I assume that he would be hoping to feel a pulse but then on some days I think it would save him a whole lot of work to not feel it if you know what I mean.  Yes, despite all this hardship that we have each endured, I still find humour in some things.  I told him that I am not going anywhere until I officially drive him crazy! 

Thankfully the chemo treatments have stopped for now.  I have been chemo-free for one month now and I am feeling more like my old self as each day passes.  Now I just deal with aches and pains and a lot of fatigue, which is easy to handle in comparison to the other nasty stuff.

My last chemo treatment landed me in the hospital for a night due to extreme dehyrdration.  I was supposed to have two more rounds after that but I had a discussion with my oncologist and she agreed with me that my body has had enough and she would figure out the next game plan.  She tells me that I am the most challenging case that she has encountered, frankly because I am not supposed to be here, my prognosis was very poor and here I am presenting with a smile and bright positive outlook every time I visit her office.  She took my case to the tumour board that meets monthly to discuss weirdos like me or should I say big question marks like me.  This tumour board consists of several oncologists, radiologists, surgeons, etc and they collectively brainstorm to offer next plan of attack against cancer.

I do have some good news to report.  Of the two tumours, one is “imperceptable” on the MRI scans and the other has shrunk considerably.  The one that is still there is the one that is complicated.  My liver surgeon was in attendance.  He said due to the location of this tumour it is too risky to operate because it very close to the main highway of vessels that support the liver.  However, it has shrunk enough that I was referred to meet with a radiation oncologist to discuss radiation treatment.  I told my regular oncologist that I am prepared to do whatever necessary to continue treatment.

So, just last week I met with a radiology oncologist to discuss starting radiation therapy.  I hit the jackpot I think.  This doctor happens to be the head of the radiation department of the clinic that I go to and he is also a professor at one of the local universities.  He is a young man and is totally up to date on cutting edge new treatments.  He discussed a new treatment with me and I decided right then and there to go ahead with it.  I also agreed to be a part of a trial study to further advance this therapy that I will be getting.  I will be within a group of 14 other patients.  Here is where the jackpot happens.  Just three years ago when I was first diagnosed, patients with liver cancer or colorectal cancer with metastasis to the liver like me, weren’t even offered any type of radiation due to the sensivity to the organ, and here I am preparing to start this type of therapy! 

Thanks to a doctor in Michigan by the name of Dr. Laura Dawson, she helped develop this new treatment.  It’s not the “standard care” given to patients.  The best I can explain it is that it’s standard care/plus+ … kind of like super-sizing.  From what I understand, the standard care radiation is beamed in one direction at a general region surrounding the tumour or tumours. Standard care treatments generally require patients to get radiation 5 days a week for a few weeks and each session only last a few minutes.  With each breath the patient takes, of course the tumour moves and radiation only hits the tumour every other breath which means healthy tissue is getting zapped also.  This new system will have me connected to a real time CT scanner at the same time which will track each breath I take during treatment.  I will be going every other day for 2 weeks and each session will be approx. 30 to 45 minutes in length.  So in other words, the radiation will fry the actual tumour when it is in it’s mapped out location (ie: tattoo marking on my tummy) which should save my main vessels from damage and toxicity.  That is the plan anyway.  Also, I forget what unit of measurement that the doctor told me they use, but instead of the radiation being at the regular level of 30, it will be raised to a level of 1000 plus with the toxicity being no greater than the regular level, now that’s what we call advancement!  He did warn me that there will be side effects whenever the abdominal area gets radiation.  He mentioned nausea, belly pain, liver pain, digestive issues, the runs, extreme fatigue, etc….. nothing I haven’t experienced already, so I can handle it.  The tumour and the surrounding little tiny vessels that feed the tumour will be burned out or as I prefer to say… will die!!!  I am very hopeful and so is my doctor that this will certainly buy me some more time.  Also because I agreed to be part of a trial study that is in addition to the radiation treatment I will undergo a few other procedures/tests/scans to track the progress or no-progress of the treatment while it is happening.  It also means that there will be more specialists looking at my liver which may pick up other lesions that MRI’s are not registering and we can zap them at the same time.  How could I say no?  Not only do I benefit but others will benefit in the future.  I am happy to be a part of research and development.  Did I mention that I also hit the jackpot because I live in Ontario and only 5 cancer treatment centres in all of Canada offer this new type of treatment?  My clinic just happens to be one of them!!!  Our government healthcare system provides me with absolutely free treatment.  If I lived just an hour away in Michigan, I wouldn’t be getting treated.  Most insurance companies don’t cover the cost and only the super wealthy get it as each session costs a whopping two hundred thousand dollars! 

I realize you have been wondering what is going on and to the best of my ability of explaining all the big doctor’s words, this is what I am able to share as my translation.  I am sorry if I worried you, I just want you to know that I am okay, I am geared up, rested and of course….FOCUSED!!!!

Christmas came early for me this year.  What a gift to be told that there is still hope and still options available for treatment.  No gift wrapping required and it’s a gift that keeps on giving, I will certainly make the best of it… this gift of time!!

Stay tuned for the next chapter of Life Under Construction… I’ve got some work to do.