A tribute to Paul

This blog post is (believe it or not) one of the toughest ones I have written for all of the emotions that has me up at 3 am to express them.  Ironically it is also one of the easiest as the words are flowing fast and furious.   Perhaps it is because I was so shaken to hear earlier this week of the passing of Paul Rutulis to multiple myeloma at the age of 52.  Perhaps it is because he leaves behind a wife, Cara, and two sons, Troy and Marco, and a wonderful circle of loving family and friends.  Perhaps it is because I know Paul and his family and have shared a laugh or two with them over the years...not as many in the recent years as we both have battled that awful brutal disease - cancer. Perhaps because I feel that cancer battlers belong to one large community of intimate strangers (if that makes any sense), with shared experiences, shared fears, shared memories and sub-consciously always considered Paul and I to be informally "in the club".  Perhaps it is because I am wracked with so many different emotions at hearing the news of Paul's passing - from profound sadness and grief...to shock, anger and despair.  Perhaps it is because I almost have a feeling of guilt that in my own personal battle with cancer I recently received some positive news from my doctors just last week that after one year...one long brutal year...I am cancer free...while Paul unfortunately succumbed in his battle.

But I check myself at feeling guilty for being healthy enough today to write this post in memory of, in tribute to and in honour of Paul.  You see I can express through my post words and feelings that are perhaps shared by Paul's family and friends.   I won't be so arrogant as to for one second pretend that I know how his loving wife and adoring sons must be feeling.  I won't be so arrogant as to for one second pretend that I know how his family circle, his extended family, his circle of friends is feeling.  What I do know is this.  I know how I am feeling.   I am stunned.  I am so deeply saddened that the second I read the message from my friend (and Paul's brother-in-law) about his passing that I shouted inexplicably to my wife that "Paul has died" and immediately began to lose it, to be gripped with despair, to cry for him, for Cara, for the boys, for his family. I know Paul was gravely ill but I wasn't aware that the battle with mm had advanced to that stage.  Craig subsequently shared with me that his passing this week was sudden and followed the latest prognosis from his medical team just a week or so ago suggesting he had perhaps 8 to 12 months left.  And then I got in touch with some really dark stuff - my own darkest fears in my own journey.  I am angry that cancer has taken another life way too early.  I am so deeply pained that his boys have lost their father at such an early age with so many memories that will never be realized.  Perhaps I am getting into touch with my deep fear for my own wife and young son.

I honestly don't know Paul that intimately or well.  My connection to him and to Cara and the boys is through Cara's sister, Erica, and her husband and one of my oldest dearest friends Craig.  I have known Paul and his family for almost 10 years, been a part of a few birthday celebrations and dinners.  I have always known Paul to be on the quieter side...more reserved...but perhaps that is simply because in the context of the gatherings with myself, Erica, Cara, Craig and others he was simply the quietest by comparison.  I may not know Paul well enough to recount stories and intimate memories of times past.  I could never write in memoriam for Paul outside of this blog.  But I hope that all of you who read this post join me in putting Cara and the boys, along with Paul's family and friends in your hearts and pray that they find comfort and peace in the days ahead amidst all the pain and grief.

http://www.lifenews.ca/announcement/2524043-rutulis-paul-mark

http://mountpleasantgroup.permavita.com/siteContent/memorial.html?personId=236102&source=redirect


Damn you cancer.  Damn you for taking another life way too early.  Damn you for leaving nothing but pain and suffering behind.

God bless you, Paul.

And Round Two goes to....

Thursday April 4.  A big day.  A day that I have been thinking about for the weeks (if not months) since the appointments were scheduled.  A day that I have been not only just thinking about but worrying about...agonizing waiting.  You see April 4 is the day that I met with both my Surgeon, Dr. Hart, and my Oncologist, Dr. Lingas, to go over the results of my one-year surveillance tests - colonoscopy, CEA blood test, and CT scan.  

If you remember from previous posts, the gastro who had both originally found the tumour last March and performed the one-year post diagnosis colonoscopy had found two polyps a few weeks ago.  Sure, he suggested that they appeared to be benign and that the rest of my colon looked good but I was still worried.  But even more than the colonoscopy, the CT scan was worrying the sh#$ out of me (trust me - no pun intended).  Remember back in September the CT scan was monitoring lesions in my lungs and a spot on my liver.  Back then the words "no convincing evidence of metastasis" caused a sigh of relief then...but it's always a temporary relief.  The fact that they found spots of concern in my lungs and on my liver in March that they were monitoring in September was a source of worry.  I didn't know I had these lesions that they are surveilling.

I don't know if I will ever...even months, years, decades from now...stop worrying.  I would imagine that worry is now on a continuum for me...some days more intense...some days perhaps not...but always somewhere in the subconscious there.  Stage IIIB - invasion of the tumour beyond the colon walls into the regional lymph nodes.  How can I not worry?!  Sure the polyps might look benign...but I need to know conclusively, definitively, that they are benign, that they are non-cancerous, that they are nothing for me to add to my list of things to worry about where my cancer is concerned. 

And the good news...no great news is that I got the ALL CLEAR from both doctors.  

I) CEA levels normal

II) polyps removed last month were benign - hyperplastic polyps that would not develop into cancer

iii) CT scan showed lesions in lungs and liver are unchanged.   As it turns out this is actually better news that if they had shown that these lesions had decreased in size.  Why? This would suggest that they were more than simply benign lesions and that they had reacted to the chemotherapy...not good.

iv) Dr. Hart supports Dr. Springer's suggestion that I need not be scoped again for two years.

So the reality of this news sunk into Victoria and I later in the day on Thursday.  If you think about it, I don't think that the news could have been any more positive than it was.

Next surveillance is CEA in 3 months, CT in 6 months.

But for now....it's time to relax a bit and LIVE A LITTLE!!!  Or as one of my dear friends suggested  LIVE A LOT!!!

So at the end of Round Two the judges scorecard reads Brown 2 / Colon Cancer 0.  I am sitting in my corner with the towel wrapped around my neck.  My coaching staff is wiping the sweat off my brow and I am spitting vigorously into a bucket - after all, kicking the crap out of colon cancer is hard work. 

Insert soundtrack to Rocky here.

Out out darn spot

Just a quick update to all of you since I realize that the last post was pre-colonoscopy more than a week ago and you may be wondering how it all turned out.  

Good news and bad news.  Which do you want first?  Let's tackle the bad news right up front first.  The bad news is that they found two polyps during the scope. I unfortunately was so drowsy from the sedative that although I was watching the procedure (or at least parts of it) on the video screen whilst laying on the table I wasn't coherent enough to ask Dr. Springer if these polyps were new since last March or could they have been in there and he couldn't manoeuver the scope to that area of the colon last March when he found my original tumour as it was blocking the upper part of the colon.   I will have the opportunity to ask Dr. Springer when I consult with him in a couple of weeks to discuss the scope.


And now for the good news...and let's really focus on that.  He / they removed the two polyps.  Good-bye!!!! See ya!  Didn't want you around anyway.  Damn polyps.  And even more encouraging is that Dr. Springer and the attending nurse both said to me after the procedure that they didn't look troublesome, rather benign actually, and that the rest of my colon looks pretty good.  Awwww shucks.  I guess all that purging the days beforehand  really made my large intestine look good.

I've said it more than once...and I will say it again.  They can remove 13cm of my bowel but they cannot remove my wit and sense of humour ;-)

And as you may recall I am working with the Canadian Cancer Society to get the message out...get screened...get informed...stick it to colon cancer.   Especially to all my friends 50 and over, @cancersociety is reminding you get checked this #ColonCancer awareness month! http://bit.ly/W8x9L4

Make your bottom your top priority. Talk to your doctor about getting checked for colon cancer every two years, once you turn 50. Getting checked for colon cancer could be as easy as taking an at-home stool test (also known as the fecal occult blood test – FOBT). 

If you’re at high risk for colon cancer, talk to your doctor about other colon cancer screening options. High-risk individuals include those with a first-degree relative (parent, sibling or child) with colon cancer and other factors such as inflammatory bowel disease (ulcerative colitis or Crohn’s disease). Visit stickittocoloncancer.ca for a list of some of the risk factors.

What good is purging without the binging?!!!

So here we go....just a little under 24 hours away from my colonoscopy. Tomorrow's colonoscopy is almost a year to the day from the original scope which found the tumour in my sigmoid colon...the colonoscopy that changed my life forever.

My day started off with taking 2 Ducolax tablets, a laxative, to "get things moving".  No solid foods for me today.  Lots and lots of clear fluids, broths, water, teas, lemon juice without the pulp, jello (yellow and green only - no reds or purples!).    Just recently I downed my first glass (of two) of Pico Salax which is no gentle laxative...it's a purgative...and man are things percolating away down there...foreboding of things to happen very shortly.  Sorry to be graphic but those of you that have had a colonoscopy or know about the prep in advance may agree with me that the prep is much more trying than the actual procedure itself.  I will repeat the purgative at 8pm this evening - again with no food, no solids, no pulp, no dairy (not that I consume dairy anyway).  And if you have my previous posts you will remember that I love to eat...regardless of how cleaned up my diet is I still love to eat FOOD.  Solid food.  So this is what's on the menu today...

I am cranky.  I am hungry.  I am visiting the bathroom regularly today....feeling "crappy" and I am trying hard not to think about the colonoscopy tomorrow...I try and focus on the hope that the conversation with Dr. Springer will be very different this year than last.  In fact, Victoria and I talked about how we are looking forward to being able to thank Dr. Springer tomorrow for everything he did last March when he heard our cries, saw our faces and the horror and despair we poured out on him at the clinic when he told us the news.  Dr. Springer was instrumental in contacting his colleague and surgeon, Dr. Richard Hart, that same day and relayed our story.  That I needed urgent bowel surgery to remove a large obstructing tumour and that we were getting married in 5 weeks.  Dr. Springer, I never got to thank you.  Tomorrow I will.  Regardless of the results of tomorrow's scope I will thank you for acting with such compassion and urgency.

After tomorrow it's the CT scan and then the CEA bloodwork.  Coming into Round Two in the match.  I am in my proverbial corner with the towel wrapped around my head...somewhere in the distance I swear I hear Gonna Fly Now (the theme from Rocky) playing.  Ready to come out swinging.  Ready to lay a beating on colon cancer.  Ready to keep up the fight and kick the crap out of it.

I know it's crappy...butt get screened!

The timing of this blog post is not coincidental nor accidental in any way. You see...recently I was contacted by the Canadian Cancer Society who found my blog out in the websphere and have inquired if I would be willing to engage with them to promote their campaign Stick it to Colon Cancer.  March is Colon Cancer Awareness month.  Of course my answer was an emphatic "Butt, of course!!!" 


 I am so very engaged with this cause for obviously very personal reasons.  My blog has been my private yet ironically very public journal...my story...my journey.  And now I hope to use it as a platform to get the message out...to appeal to all of you who have followed me on this journey...to make your bottom your top priority...to really stick it to colon cancer...no "butts" about it....or for fear of repeating myself - kick the crap out of it.

Colon cancer is the number two cancer killer, yet it is 90% treatable when caught early.

Getting checked can help find colon cancer early, or even prevent it from happening before it starts. This is why it is so important to check for the disease before you have symptoms.

In 2012, an estimated 8,700 Ontarians were diagnosed with colon cancer and approximately 3,450 people died from the disease. In comparison, the only other type of cancer that claims more lives is lung cancer. 

Make your bottom your top priority. Talk to your doctor about getting checked for colon cancer every two years, once you turn 50. 

Getting checked for colon cancer could be as easy as taking an at-home stool test (also known as the fecal occult blood test – FOBT). 

If you’re at high risk for colon cancer, talk to your doctor about other colon cancer screening options.

High-risk individuals include those with a first-degree relative (parent, sibling or child) with colon cancer and other factors such as inflammatory bowel disease (ulcerative colitis or Crohn’s disease). Visit stickittocoloncancer.ca for a list of some of the risk factors.

Get the bottom line about colon cancer at stickittocoloncancer.ca. Download a tip sheet with questions to ask your doctor or send a free e-card to friends and family to remind them to get checked for colon cancer.

Spread the word with your family and friends about the importance of getting checked for colon cancer.

Just when you thought you were eating "healthy"

First a disclaimer if you will.  I don't for one second pretend to be an expert on the subject of GMOs (genetically modified organisms), food, organic versus conventionally raised food, "healthy" "safe" foods versus unhealthy or unsafe foods.  I don't want to sound preachy here or like I am standing on a soapbox.  I would rather invoke (not provoke) thought, discussion and perhaps even thoughtful discussion about this whole topic of food, of GMOs, of organic versus conventional agriculture. This topic of food and particularly GMOs has become increasingly more significant to me in light of my battle with colon cancer at such a young age.  I have incessantly (and perhaps even obsessively) questioned if my diet, the food and drink that I consumed in my life caused my colon cancer?  Were there are environmental factors such as pesticides, insecticides, GMOs that were part of the cause?  I will never know...but just want to put this post into some context. Where GMOs are concerned, I would suggest that we just don't know what the impacts are to our human bodies and it is worth at least discussion and open dialogue.  

There is a video entitled Genetic Roulette http://vimeo.com/53995182 that is, in my opinion, intensely thought provoking, and hopefully discussion-provoking.  At the end of the day, do we definitively know that the food that we consume especially the food that is genetically engineered or genetically modified, is safe to our human bodies?  And if the answer is that we do not definitively know that they are then we all have a right to ask the the tough questions, to engage in the discussion, to advocate for change, to push our legislators, our lawmakers, our leaders to push for a food supply that IS safe, that has the health of its consumers at the centre of the wheel.

I have become so consumed with the topic of food, and as you know from my previous posts have really committed to as much as possible following as healthy a diet and lifestyle, that I just signed a petition -- Bring Mandatory GMO Labeling To Canada.  I would encourage all who read this to join me to advocate for openness and transparency for food labelling in Canada - to allow us consumers to know if our food that we are purchasing is genetically modified or contains GMOs - and to allow us to make an informed choice. Click the link to find out more and to sign the petition advocating for GMO labelling.

http://www.avaaz.org/en/petition/Bring_Mandatory_GMO_Labeling_To_Canada/?kgxwleb 

Thanks for reading.  Posted with love.

3B or not 3B..that is the question

It has been almost a month since my last update or blog post.  Wow. Life with a newborn has certainly found me with limited time to blog.  Or maybe (and quite frankly) I have mentally taken a bit of a break recently from focusing on my cancer...or at least I have tried to focus on other things a little more life affirming.  


Last weekend we celebrated my parents' 50th wedding anniversary!!! Now THAT is what I call "more life affirming".  Happy Anniversary M & D!!! I find myself at a loss for words (yes - it happens even to me ;-)) when I think about my mother and father and their commitment to each other...the absolute dedication to working hard on their relationship, to working on themselves as individuals, to being present...I am filled with a sense of awe, admiration and determination of my own to learn from them...to bring that same commitment to my relationship with Victoria and to my son, Ben.  I owe it to them to be there, to be present, to be committed and thinking of our life in those terms - long term.  

It has also been soooooo life affirming watching young Benjamin every minute, hour, day, week grow and become more and more of his own unique young self.  In the past week or two it is almost like a switch has been flipped where he sleeps almost through the night, he seems to be enjoying being awake and being active during the day now...he loves grabbing and swatting his friends on the playpad....so much so that he expends a lot of energy to the point of exhaustion....

Benjamin or "Superboy" as I call him gives me all the reason I need to stay focused on being healthy, to doing everything in my power to beat this thing.  Today is his 3 month birthday....happy birthday, my son.  Thank you for using your super powers to help Dad.

This week I went in to St. Joe's for my regular monthly port flush.  I also have pushed to have bloodwork drawn to analyze my Vitamin B12 and folic acid levels to determine if the chemo treatments have caused a condition, pernicious anemia.  I will find out this week if those powerful drugs have created deficiencies in my ability to process and absorb B12. I continue to experience symptoms - neuropathy / nerve damage in extremities, nerve pulsation in the hands and feet, unsteadiness and lack of balance - which could be a result of the chemo drugs, particularly Oxaliplatin, and could have resulted in these long lasting effects.  I was triggered to investigate this possibility from my cousin, Carolyn, who suggested her son, Alex, requires B12 injections to manage his neuropathy.  We shall see.  

Returning to the Oncology clinic and the treatment room this past week really triggered some pretty tough emotions and brought back some tough tough memories.  Some of the same patients were there this week as were there when I was going through treatment.  It's tough. That's all I can say.  Hard to find the life affirming moments.

Looking ahead...

Although I have been so focused on the here and now there are some pretty significant dates and anniversaries in my near or not-too-distant future.

March 8:  Colonoscopy.  Almost one year to the date of my original scope.  1 year surveillance post sigmoid resection surgery.  

March 13:  One year anniversary of initial diagnosis or discovery of the "large growth" that changed my life in an instant.

March 16:  One year anniversary of admission to the hospital and my first ever CT scan.  Who knew that it would the first of many scans in my future.

March 17: 1 year anniversary of surgery when they removed 13cm of sigmoid and 17 lymph nodes.

March 25: 1 yr to the date when I was given the news of the pathology report - Stage 3B Colon Cancer with regional spread of the cancer beyond the colon wall with 2 of the 17 nodes being cancerous.

March 27:  CT Scan.  1 year post-surgery surveillance and monitoring of the pelvic / abdominal and thoracic areas and observation of the status of the lesions on my liver and lungs first spotted in CT Scan dated March 16 a year ago.

March 27: CEA test.  Tracking and measuring those cancer markers.

April 1:  Meet with my surgeon, Dr. Hart to discuss the colonoscopy and CT scan.

April 4: Meet with my oncologist, Dr. Lingas to discuss the colonoscopy and CT scan.

Such is the life of someone with Stage IIIB Colon Cancer. 3B.

Advanced disease with regional spread beyond the colon walls to regional lymph nodes.  

Rigorous surveillance to determine if there is any recurrence or spread.

Constant anxiety and prayer that the FOLFOX adjuvant therapy killed all those friggin' cancer cells that managed to survive the surgery.

I don't know why but I am reminded of this passage from Shakespeare's Hamlet.  I took some liberties with the beginning of the passage, obviously, to suit my own but the meaning is....well...maybe I'll leave that one for others to ponder...

Whether 'tis nobler in the mind to suffer

The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, 'tis a consummation
Devoutly to be wish'd. To die, to sleep;
To sleep: perchance to dream: ay, there's the rub;