I’m Not Cancer’s Bitch!

leighann

by Leighann Sturgin

Recently, on Facebook, a sorority sister of mine posted results to a quiz called “How Bitchy are you?” She scored 82%, which put her in the “Mega-Bitch” category. This surprised no one; not even her. I don’t usually participate in those types of quizzes but I did just to see if I was right about myself. I, of course, was right. I scored 14% bitch, which put me in the “Not a bitch at all” category. But the truth is; I’m a recovering bitch. I used to be selfish, self-centered, snobby, impatient, negative, demanding and, well, bitchy. I expected everybody (including coworkers and anyone in the service industry who had the unfortunate opportunity to wait on me) to do their job, all the time, on time and never make mistakes. And everybody, everywhere should ALWAYS stay on their side of the road, use a turn signal appropriately, and go AT LEAST the speed limit. There you have it, a well-rounded definition of bitch in two sentences. Oh, you messed up my order, fine I’ll eat it because I don’t want you to spit in it if I send it back, but I’m not paying for it. Yep, that was me. I know some of you who’ve only known me for the last 10 years might be surprised. But just ask someone, ANYONE, who has known me longer.

So, what changed me? A very unlikely team: Jesus and cancer. I graduated high school and college a bitch. I got a job as a bitch. I got married as a bitch. (Back then my husband used to call me “spunky.” Isn’t he sweet!) Then I found Jesus. I grew up going to church and hearing about him but I didn’t really know him until a few years after I got married. I accepted Jesus as my personal Lord and Savior. I was baptized. I was a baby Christian but I was still a bitch. I gave birth to two sons in two years; still pretty much a bitch. Hey, what can I say? I was learning…slowly. Then, when my youngest son was 2 ½, I lost my job and was diagnosed with stage IV colon cancer all within the same month. My world came to a screeching halt but to my surprise the earth was still spinning. I said to my husband “Huh! Well, whadda know! I’m not the Earth’s axis after all!”
There is nothing like your own mortality to adjust your entire perspective on life. WHAM! Just like that all that little junk that used to drive me nuts didn’t matter AT ALL anymore. Is my house clean? WHO CARES! Those dust bunnies aren’t going to be at my funeral crying that I didn’t spend enough time with them. The guy in front of me driving 10 m.p.h. under the speed limit…it’s okay, better to get there late and safe. Maybe he’s on this way home from chemo or he just visited his wife in the hospital. I wear out my first Bible. It completely falls apart. It’s a good problem to have. I get another one. The waiter takes forever and messes up my order, I don’t say a word. I thank Jesus I can swallow solid food and still have 5 feet of small intestine to digest some of it. I leave a 25% tip. Maybe the waiter is having a bad day. Heck, maybe he has chemo brain.

Whoa, what is happening to me? I’m loving, joyful, peaceful, patient, kind, meek and self-controlled. I was so close to death and yet so full of Hope. I was given Grace and found I was able to give grace. Even though Lynch Syndrome is genetic, I don’t believe it was God’s plan for me to have cancer. I don’t believe he “allowed” it either. In fact, I believe he wept for me, as any loving Father would for his suffering child. I chose not to allow cancer to crush my spirit or my hope. Yeah, I’m not cancers bitch. I’m Jesus’ bitch.

Secrets

Troy
by Belle Piazza

“What do you think?” I asked my husband as he put my latest blog down and glanced up at me.
“You spent a lot of time writing that didn’t you?” he replied. Not what I expected nor wanted to hear. He clearly wasn’t impressed. “It’s not what you normally write. You’re dancing all over the place – every paragraph could be a blog”. He was right. I touched on many things but didn’t focus on any one. I’d achieved what I wanted to write about but not what anyone would want to read. I wanted to talk about the logistics of The Colondar photo shoot – but didn’t want to get caught up in the emotion. Mission accomplished if I was looking to write a rather barren and rote blog. But to address the emotional side of the photo shoot? No way. I can’t go there I thought, it’s too personal, too painful, too deep – even for me. My chest tightened and my eyes teared up just at the thought. I can’t go there because I don’t know how to put into words what I’m feeling. I can’t go there because there are too many secrets that can’t be told. The models shared themselves with me, with all of us, in confidence – revealing things that weren’t intended for distribution on social media or a web-site blog. And then it hit me. It wasn’t their secrets I was supposed to write about. It was mine.

Maybe not a ‘real’ secret, but something I haven’t been shouting from the roof tops. Those closest to me know my situation. Tumor growth and spread on my last 3 PET scans. Chemo’s no longer working and no doctor will do surgery or radiation on me other than for palliative efforts. I intentionally scheduled my last PET scan to be done after I returned from the photo shoot. I didn’t want to carry that negative energy with me. The photo shoot is about the 2015 models. For one extended weekend in June, it’s about having an amazing experience that they will cherish for a lifetime. It’s about taking photo’s and it’s about cancer – but it’s about so much more than that. It’s about connecting with people who understand. People who get it – who really, really get it. It’s about celebrating survivorship in a safe environment where secrets can be shared and talked about. It’s about baring their scars and baring their souls. And for me, it’s about telling my Colondar family how much I love them – as it may be my last opportunity to do this in person.

I waited until Saturday night and a little liquid courage to embark on my first conversation. Troy’s been the Graphic Designer for The Colondar from day one. Shortly before agreeing to work on the Colondar, he lost his father to colon cancer. Always being the sort of person to give back, this was a natural fit for him. Natural, but not easy. Troy has known every model that has graced the pages of The Colondar. Each year he updates the slide show presentation honoring those we have lost. As the night got rolling, karaoke was in full swing and everyone was feeling quite fine, I sidled up next to Troy on the arm of the chair he was sitting in. I leaned into him, put my arm around him and did my best to express how much he means to me. I told him I wanted him to know now – while I was still there and able to tell him in person. Before I was a face in the slide show, a memory and a name. I did my best. I wanted nothing left unsaid. Later that evening Troy, myself and Trish joined together to sing “Annie” by John Denver. We were pathetic, but Troy later told me how much it meant to him and we agreed that “Annie” would always be “our song”.

Sunday morning Mark McCarty (the photographer) pulled me aside “lets take some pictures” he said. I adore Mark and he knows it. I’ve always made this clear to him. He’s been taking Colondar photos since the 2nd Colondar – with the 2015 shoot marking 10 years he’s been working with The Colon Club. Like Troy, he knows most, if not all, of the models we have lost. I was wearing no make up, a less than flattering peach colored t-shirt and he asked that I wet down and slick back my hair. “Sometimes I enjoy the process more than the pictures” Mark tells me with a smile. “Sometimes I don’t even look at the pictures!” I sit in front of Mark’s camera and relive my memories from three years ago when I was one of the models. “A little to the right, down now, that’s it”. He goes through his process of finding just the right light, the right angle, to capture the vision he sees in his mind. “Okay we’re done” he tells me as he sits down next to me. I ask to see the pictures. I’m struck by what I see. It hurts. I tear up. He looks up slightly puzzled. “I just see a face that has seen a lot of pain these past few years” I tell him. “Cancer has really taken a toll on me”. I glance briefly at my freakishly blue eyes that stare outward, glowing like an alien. The only sign of fight I have left in me. I don’t like what I see and secretly hope that when we part he’ll delete them. Mark asks me what’s going on with me and I tell him. My time is running short – we just don’t know when. Mark takes it all in stride. He has to. How else could he continue to show up year after year and give his all to each new model that comes before him? He gives me a long deep hug and I know that he knows how much I love him.

Sunday night I stayed up late with my roommate Angie – a former Colondar model who lives in Portland. We’d attended the Grand Ole Opry together, traveled to the shoot together, worked on our writing together and pretty much had the best time we could have possibly hoped for just hanging out. Angie reached out to me about six months previously, so I haven’t known her for long, but I feel so close to her we practically finish each others sentences. “I can’t imagine you not being here” she said. “It’s not that I’m in denial – it’s that you look so healthy”. She’s right. If you didn’t know otherwise, you’d never guess my cancer is slowly and steadily spreading across my body. Angie and I are very close and I can talk to her openly and honestly about my cancer. We’ve done so many times. I didn’t have to tell Angie how much I love her, I do it every time we’re together.

Monday morning the staff sat together at the long tables in the dining room signing thank you cards for each other. As I got to Krista’s I realized I couldn’t write all I wanted on her card – there just wasn’t room. So I sat next to her, put my arm around her, pulled up “I Will Stand By You” by Rascal Flatts on YouTube and said “Krista – this is what you mean to me”. I cried hard and held her as the song played and the words displayed across the screen. I couldn’t help myself. If you haven’t heard this song, look it up and you’ll understand.

By Monday afternoon the staff had left for the airport and the retreat was empty except for Deb (our Chef) and myself. My flight had been delayed until Tuesday. The people, the energy, the magic was gone. Deb drove me to my hotel room in Nashville. When she dropped me off she asked if she could pray for me. She reached for my hand, closed her eyes and said a prayer for us both. I thought about Deb. About Mark and Troy and Krista and Angie. About the 12 new models and the experience we had all just been through. I thought about cancer. I thought about the secrets the models had shared with me and the secret I had withheld from them. I wanted them to be empowered by sharing their secrets and I wanted to protect them from hearing mine. I hoped they had enjoyed – thoroughly enjoyed their weekend. The weekend was about photographs and interviews, sure; but it was about so much more than that. It was about strength, love and perseverance. It was about survivorship and tears and laughter. I thought about Mark’s comment – it’s not about the pictures – it’s about the process. Some secrets aren’t meant to be shared; others are. We need to tell those we love how we feel about them now – while we’re still here. Our love for our friends and family should never be a secret we hide from them.

Not Alone

2015 Models

by Leighann Dunn Sturgin

It was coming up on the 10 year anniversary of my March 2004 diagnosis. I started to wonder if there were any other young, ten year, stage IV colon cancer, Lynch Syndrome, survivors, living life after cancer. I thought the odds of finding someone just like me were pretty slim. For ten years, I felt so isolated and alone in the small, Amish country, Ohio town where I live. Initially, after my diagnosis, I sought out chat rooms (I had never even heard of a blog), but I didn’t find any young people with stage IV colon cancer, trying to raise preschoolers. I didn’t want to talk to people dying; I wanted to talk to people living with this disease. I didn’t find anyone online or in real life and was soon too sick to search anymore. Even when my health became a bit more stable, I didn’t resume the search. I was convinced, I was alone. That is until January 20, 2014, when I typed ‘young, ten year, stage IV colon cancer, Lynch Syndrome, survivors, living life after cancer’ into Google. The first thing I found was Danielle Ripley-Burgess’ Semicolon Stories A Blog About Life After Cancer! I clicked on the ‘My Story’ section and read that she had done a similar search in 2007, found the Colon Club and saw they were accepting applications for young colon cancer survivors to model for a calendar called The Colondar. She applied, was accepted and was Miss October 2009. I clicked on her link to the Colon Club and ordered the 2014 Colondar. I started to read ALL of the Colondar model’s stories. I was flabbergasted! Alive, active, young people, living with this horrible disease; I wasn’t alone. I am not alone! Then I saw the deadline for the 2015 Colondar Model application was January 23, 2014. Wait, What? I have 3 days! The application is lengthy, well maybe it isn’t the application. Perhaps it’s my 10 year, 7 major surgeries, 4 reoccurrences, Short Bowel Syndrome, living on HPN story, that is lengthy. It took me all 3 days to complete the application. I submitted it on the last day possible and never thought I’d be selected. About a month later, I got a phone call from Angie Laroche (Miss September 2011 and Colondar staff member) saying I was chosen. I was so excited; I screamed in her ear. She gave me the dates of the photo shoot and asked if I was available. “Um, whatever else is on my calendar…I’ll cancel.”

When reality set in, I had a brief moment of panic. I actually lost sleep. All I knew was when I was going to the photo shoot, and that I’d be baring my scars and poop bag for the world to see. I didn’t know where the shoot would be or who the other models were. I needed to make arrangements to ship the IV nutrition (HPN), I require nightly. I hadn’t traveled anywhere by myself in more than 10 years. I’m used to being at home all day by myself in sweatpants and cruddy T-shirts! What was I going to wear? What would they want me to wear for the photo shoot? My mind raced with thoughts like “I wish I didn’t just get all my hair cut off.” (I donated 10” of hair to Pantene’s Beautiful Lengths in January for my 40th birthday) and Miss July 2014, Laura McClinton, is GEORGEOUS but I CANNOT wear a bikini.

Everyone in the 2008 Colondar wore blue ribbons; a few were (tastefully) topless. I can’t do topless. I had to take my thoughts captive, redirect my mind; something I’ve had a lot of practice doing. I couldn’t let my mind race with negative, fearful thoughts. I had to choose to let it all go; to trust Krista Waller and her Colondar team. I prayed to God to give me courage, peace, good health. So many times over the last ten years I missed out on events I was really looking forward to attending. The excitement, anxiety and stress would lead to an acute decrease in my health status.

About a month before the shoot I got an email describing the theme and color scheme for the 2015 Colondar 2.0 and I did it again. I panicked! I again thought “I can’t do THAT!” I believe there is an enemy that seeks to kill joy and destroy hope and I refuse to let him, so once again, as I do daily, I turned to my Jesus. My Savior. My Redeemer. My Friend. And I asked for courage, peace and good health and trust in Him and in Krista, Suzie and the rest Colondar team. In June, I got on a plane all by myself and embarked on this journey, to spend a week with 11 other models (and the Colondar staff) I didn’t know, to a remote location, I knew little about…trusting and hoping. Hoping that maybe…just maybe…my story could make a difference and that someone, somewhere wouldn’t feel as alone as I did. BUT what I didn’t expect is the difference those 11 other survivors (and staff members) would make in my life. We 12 have been in CONSTANT contact since we left the retreat. I couldn’t imagine my life without them.

Now don’t get me wrong, I was never really alone. True, I lost a lot of friends since I was diagnosed with cancer. Co-workers went on with their lives without me as I was no longer able to work. Some friends I had to fire because they just pitied me and I hated that. Some couldn’t handle it so they bailed. I, of course, made new friends, some really great people, and my family was with me every step of the way but they just didn’t really understand what this disease feels like. (I hope they NEVER do.)

I don’t feel alone anymore. I have a whole new Colondar family. I feel that I can tell them anything, nothing is off limits, nothing is embarrassing or too disgusting for this family. I love them.

Make Lists

to-do-list-get-things-done-21170889

by Belle Piazza

As time goes on and I find myself running short on options for treatment, the question nags in the back of my mind – what should I leave behind for my children. Photo’s, letters, video recorded interviews – all great ideas, but except for the photo’s, very hard to tackle as a project. I’m a project oriented person. I love projects, organizing things and the feeling of accomplishment when a project is finished. But trying to record my thoughts, my advice, my memories, my experiences for the sole purpose of leaving them behind for my children, because I’m slowly dying of cancer, has me left me completely paralyzed.

And so, I’ve decided to start with leaving them advice. I’ve started with advice because it’s a simple project. You see, I only have one piece of advice to leave with my kids. It’s a catch all “this is what you need to do with your life” piece of advice. The advice is – make lists. Don’t over think it, just make lists. The written word is powerful, as in the old saying “the pen is mightier than the sword”. Mental notes are great, but when you put something down in writing it’s like putting a virtual request out to the universe. The stars align, doors open and opportunities are created. I don’t understand it, I only know it to be true – making lists makes things happen.

So with this in mind, make grocery lists and Christmas lists and birthday lists. But that’s just the beginning. Make your lists personal. Make lists of books you want to read, movies you want to watch and songs for your I-Pod. Make lists of restaurants you want to try, foods you want to cook or wines you want to sample. Make a list of fun things you’d like to learn – a hobby, a musical instrument, a foreign language or getting your pilots license. Make lists of places you want to visit and lists of characteristics of places you’d like to visit. Your lists should contain parks down the street, other cities, states and countries. When visiting those places, make lists of everything you want to see and do while you’re there.

Make lists of what your dream job would entail, where you want to live and where you want to work. Make simple and mundane to-do lists of what you want to accomplish today, this week, this month, this year. Make five and ten year plans. When five and ten years have passed make new five and ten year plans. Make a bucket list of everything you want to experience in your lifetime. Revel in the feeling of accomplishment every time you cross an item off your bucket list and then add more things to it.

Make a list of the characteristics you want in a significant other – and make that list long and specific. Make a list of your “deal breakers” and stick to it. Make a list of what you want to improve upon in yourself. Make a list of all the blessings in your life and people you are thankful for. Hold this list close to your heart. Make a list of all the things in your life that have caused you pain and hurt and then make a lovely campfire out back and burn that list.

When you find yourself questioning a relationship, a job or which car to buy – make two lists – one for pros and one for cons. Compare the two lists and in most cases it will become abundantly clear which direction to take. When you realize you have far more on your lists than you could ever possibly imagine accomplishing, add a few more things. And when you have completely exhausted those lists – or are coming close to it – and you will – add more; or better yet, start with a clean, fresh list.

I’ve never had a Bucket List per se, but if I had to make one up today it wouldn’t be long. There are always things I’d like to do, places I’d like to see and definitely people I want to visit one last time. There are events I would like to attend in person – graduations, weddings, first jobs, first homes, the birth of a grandchild. But those just aren’t in the cards I’ve been dealt. We never get everything we want in life, but with lists focused on what we hope for, we have a great shot at achieving much of what we want and many things that we never would have dreamed possible. We need to remember that all things are possible, so when making lists, don’t let the sky be the limit, let it be the beginning. We should never have a completed list – even as our lives come to an end.

When people ask me what they can do for me, I’m going to tell them to make sure they are making lists. I want my surviving friends and family to live full, happy and productive lives, just as I have, and I can’t think of a better way to map that out than to live with constantly changing and evolving lists. Lots of them. So please, don’t over think it – just make lists.

A View from the Chemo Chair

Gwen Hobbs

Gwen Hobbs

by Gwen Hobbs

When I was first diagnosed and went to meet with my oncologist, I had just a glimpse of the chemo room and the occupants of the chairs. I shuddered thinking that could be me some day. My impressions were tiny gaunt people who looked like they had been through the ringer. Little did I realize that that room would become almost like a second home. Three years later, I just started my 50th round of chemo – not infusion. Sometimes there are three infusions per round and I haven’t done the math on that. The regimen I’m on now is 5fu, Leucovoran and Irinotecan known commonly as Folfiri. It’s my last chemo combo. If and when this quits working, I’m done.

As I walk in the semi-circular room, I’m greeted with smiles from the chemo nurses who I believe are the angels of cancer treatment. I know they have been for me. They’ve been there for me when I would get the bad news that more tumors have grown, the good news of my son getting married and later having a daughter (I always have the latest pictures of “the Princess”), to getting good news that tumors have either disappeared or shrunk and all the crap in between. I am Facebook friends with several of them as well.
My husband, Gary, is carrying my “chemo bag” which contains just about anything I might need from puzzle books to the Kindle Fire I got for my birthday last year (what a godsend!) to lotion to moisturize with to peanut butter cheese crackers to socks, etc. In addition to my purse, I am also carrying a carafe with hot tea. They have a coffee machine at the center and tea bags but they’re all decaf. Yuck!

If I’m there early enough, I can get a cubicle and I usually like to get the one in the middle so I don’t miss anything going on. Gary pulls the chair out so I will be able to recline and helps me get situated. He then goes and gets himself a cup of coffee, a cup for my tea and some cookies which I slowly nibble during the infusion. I’ve tried eating a meal while being infused and it just doesn’t work for me.

Most of the time, I’ve already had my port accessed because they do my blood draws through it. This time, we couldn’t get the blood to draw so they had to access the one good vein in my left arm. Thank God, it was only one stick and the vein didn’t collapse! However, they had left the port accessed so my chemo nurse just had to hook me up to the saline in anticipation of starting my premeds – Aloxi (for nausea) and 4 mg. of steroids and atropine to prevent the stomach cramps from the Irinotecan.

There’s a lady from my town in the cubicle next to me and we got to visit with her before we both ended up sleeping for a while. On the other side of me is a new person to me but she’s obviously “an old hand” from the banter going back and forth. Bless her heart, she had an allergic reaction to something and scared the bejeebers out of everyone. After a bolus of steroids and Benedryl, she got better. There were two people starting chemo for the first time and the rhythm of the talk between the nurses and the new patients is a familiar one. Not only because I’ve been through the speech, but over the years I’ve heard it many, many times. I always pray that the people they have with them are taking notes because all the information given borders on overload. I’ve seen these nurses go and get lunch for people who don’t have anyone to get them something to eat and they probably paid for it out of their own pockets at times. I’ve heard them counsel patients who just don’t think they can take another infusion.

At the end of each side of the room, there’s an area where three chemo chairs are situated. Later patients usually have to take those. You get to know people’s stories there better than you can if you’re in a cubicle, which some days is a blessing and on others just something I don’t feel up to. I’ve met all kinds of people with all kinds of cancers while sharing the corner spaces. The yard man who was getting his last infusion of Folfox and planning on mowing three lawns after that! The farmer who’s wife so sweetly waited on him while looking shell shocked that they were having to go through this again for the third time. There are people from all walks of life but all of them have a look of hope as they enter the room even when they know the chemo is going to make them sick as a dog or make their hair fall out within 2 weeks.

The noise level when the nurses are getting folks hooked up and exchanging information on how each other are doing, etc. can sometimes be cacophonous but It’s a stark contrast to an hour later when Benadryl and/or Phenergan has been infused in many of the patients. It’s quiet. Really quiet. Reminds me of nap time in school. That seems to last for about an hour and then it’s time to unhook some of the patients and new patients are coming in. And so it goes…the view from the chemo chair – a place of hope and, sometimes, terror. There are more people missing from my survey than I like to think about. I always hope it’s because they’ve won the fight but know in my heart that’s not always the case.

As I get the 5fu bolus before they switch my IV to the pump I’ll take home for my 46 hour infusion, I look around the room and remember how much I missed all this when I was on oral chemo. There’s a comradery with complete strangers who only have one known thing in common. We have cancer and we’re doing everything we can to beat it.

Wendy’s Story – A Mother Lost

Amber & Michael

by Wendy Touchette

The email link to your January blog post sat in my inbox for many weeks. I have struggled with what to respond, how to respond or even whether I should respond. As I finally reply, although my words may not be quite as elegant or humorous as yours are in your blog posts, I hope my words can be honest and heartfelt and maybe give you food for thought.

Although I am a mom and went through my own cancer journey five years ago, I can only begin to imagine myself in your shoes right now. However, having been a child who lost her mom to cancer many moons ago, I hope sharing a little of my memories and experiences might be helpful to you in some way. I was 4 and my sister was 7 when my mom was diagnosed. To be honest, I have few memories of her illness and subsequent surgical and chemo treatments. It was 1975, cancer treatments were limited (especially in western mass), and people were honestly afraid to talk about it too much. Despite her fight, she lost her battle in the February 1976 at the age of 26. My dad was 29; I was 5; my sister was 7.

Over the years, a menagerie of family – grandparents, great grandparents, aunts and cousins – provided a great deal of love, care and support for us, especially helpful to my dad as he navigated raising daughters on his own. Early on, most people did not share many stories about my mom with me. The exception was great grandma Benoit, whose house was my home away from home on many weekends. I treasured those stories that supplemented and brightened my own limited memory of the short time with my mom in my life. My sister, though only a few years older, had many more and vivid memories and stories of her time with mom. As I grew older, I became more bold and asked questions and requested stories about my mom from those who knew her best. I think they were sometimes afraid that somehow talking about my mom would make me sad. How silly – I craved these stories and loved hearing about the woman who gave me life. I was grateful to everyone who shared.

With the high expectations of dad and family, my sister and I excelled in school and were the first in our extended family to graduate college. But even beyond the academic accomplishments, my sister and I have both grown up to be very level-headed, independent, mature and responsible people. I attribute that to our experiences growing up, including the loss of our mom. Even now, although we are very different people, my sister and I share a very special bond that will never be broken.

You asked “was it worth it” and responded yes, because you had kids. While everyone’s life’s journey is a different experience of people, places, events and circumstances, please know your kids lives are made infinitely richer by the memories that you are giving them and these experiences can be influential in a way that makes them stronger individuals as they grow. I can only hope that your family celebrates your life with your kids not only while you are here on earth, but through stories and memories for their entire lives.

The Joy and the Sorrow of Cancer

Angie Laroche and Belle Piazza

Angie Laroche and Belle Piazza

by Belle Piazza

The phone call from my oncologist didn’t surprise me, but still, it was upsetting. The tumor we radiated had shrunk, but there were new tumors – most between my lung and my chest wall. An unusual presentation my oncologist told me. Clearly the chemo cocktail of Irinotecan and Erbitux wasn’t working as this was my 3rd scan in a row with growth. Time to change to one of my last resort chemo’s – FOLFOX. I swore I’d never do Oxaliplatin again. Just goes to show – never say never.

My husband listens to my phone call in silence. I didn’t even tell him about the scan. He never asks. I sat there upset and angry, crying silently. He continued to watch T.V. and play on his I-Pad. When he finally asked if I wanted to talk about the scan, naturally I bit his head off. It’s our dysfunctional way of dealing with my illness. A combination of silence, anger and avoidance. He throws himself into his work and I’ve given up on trying to talk about it with him. Truth be told, if we ever did have any deep, meaningful conversations, I’d see how much this really hurts him and that would be more than I could handle. So I hoard information and mete it out only when absolutely necessary. It’s the only thing left that I have any control over – information. How sick is that?

When it comes down to really difficult decisions, that’s when I get him involved. He’s a master when it comes to research and sorting through the science of it all. And he has a memory like an elephant. Where I fall short, he picks up and vice versa. Where he falls short emotionally, my friends step in. Somehow it all balances in a precarious Cat in the Hat sort of way.

I check into a clinical trial at my cancer center but I don’t qualify because of mutations in my tumor. I’m surprised at how emotionally let down I feel when I hang up the phone. I put a call into another cancer center to check into a similar trial, though if they have the same criteria, I won’t qualify for that one either. I wait for the return phone call, which doesn’t come.

I realize its been three days since I’ve showered. Finding the motivation to shower, fix my hair and get dressed is like me running a marathon – it’s just not happening. I know this is a sign of depression but I’m extremely resistant to going on anti-depressants or even seeing a therapist. We live in a small town – choices are limited. To find a therapist who would really do me some good would require driving – another thing I have no motivation to do. I think if I didn’t have kids I’d start sleeping in the closet, eat nothing but Lucky Charms and live in the dark for the rest of my days. Not good, I know.

I work hard, mentally at least, to find ways to comfort and console myself. Friends reach out to me but I really don’t want to talk. What’s there to say? Not much. I don’t want to talk about my imminent death. I pick up my I-Pad to play Bejeweled, check in on Colon Talk and watch crime show reality TV. That’s my idea of multi-tasking these days. The phone rings but I ignore it. The shower can wait another day.

I try to convince myself that I have to pull myself together, get out of this dark hole and LIVE. I have lots of trips and activities planned for the spring/summer, but in late winter, my social calendar is as dull and boring as the gray, wet weather. And I have no desire to try to fill it. I even cancel some appointments I had lined up. I feel badly for the few friends I hesitantly meet with. I’m not very good company. I’m distracted and lacking focus. I especially avoid my friends who have survived cancer. It’s not that I’m not happy for them; I am. But it’s hard to be happy and celebrate survivorship when I’m thinking of planning my own funeral.

This is it I tell myself – my last months or years of my life. Don’t waste them. You only get to die once – don’t screw it up. People who don’t know they’re going to die have it easier I think to myself. No one is looking to them to make the most of their last days on earth. They don’t have that feeling of impending doom hanging over their heads. They go about their merry ways oblivious to what’s waiting for them around the corner – a safe or a piano about to fall on top of their head or some other random event that will cause their early death. Nope, no pressure at all.

Inevitably something always comes up that forces me to leave the house. Taking the kids to school, of course, but you can do that in your robe and slippers. I’m talking a real motivation – like the Costco mailer with a coupon for Lucky Charms. On this mid March day it’s a luncheon appointment I have with a stage 4 friend who is celebrating 6 years since her original diagnosis. She has been cancer free since surgery. It takes all the energy I have to clean myself up, put on something that doesn’t look like pajama’s and fix my hair. Or maybe I’ll just wear a hat. In any event, I manage to leave the house somewhat put together. If there’s one thing I won’t do it’s cancel on short notice for no good reason. As my car pulls out onto the main road “Brave” by Sara Bareilles comes on the radio. It brings tears to my eyes. I realize I have to pull it together for the sake of my friend. I make a hasty stop into the local florist for a bouquet of blue flowers which they hand select and assemble for me. I tell the florist both of our stories, more tears. The florist sends me off with a complimentary bouquet of daffodils, which I drop off for the widow at my dry cleaners – she lost her husband to colon cancer a little over a year ago.

As I drive to the restaurant I have an epiphany; an Oprah “ah-ha” moment. I suddenly realize it’s okay to be sad for me and happy for my friend at the same time. Sorrow and joy don’t have to be experienced separately and while they may not go together as comfortably as peas and carrots, they can at least coexist on the same dinner plate.

Over blue margarita’s on the patio I share everything with my friend and she listens with a sympathetic ear. I know she has survivors guilt and I know she cares for me deeply. I know if she could change my destiny she would. I tell my friend how happy I am for her – and I mean it. I am honestly thrilled that she has survived. It’s a strange feeling, knowing that you’re not going to survive and the person across the table from you will – despite having a very similar initial diagnosis. But my feelings of joy for her are honest and sincere. My joy for her is as real as the sorrow for myself. It’s a strange emotional house to be in – I’ve never quite felt those feelings simultaneously before today. My lesson learned is that joy and sorrow can be experienced and shared simultaneously; they are not exclusive of each other. Sometimes it’s the simplest things that make the biggest impact in our daily lives.

Dear Colon Cancer

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by Jose Baez

Dear Colon Cancer,

For five and half years we have had a turbulent and, at times, violent relationship. You came on strong, skipping all stages and going straight to stage 4 like I was a pushover. It caught me off guard, surrendering to the overwhelming emotional strain of your demand for attention. But with help from family and friends, I started to realize how much stronger I am. With professional help from my oncologist, I fought back against your will to dominate me. Although the seven months struggle took a toll on my body, I got rid of you.

From that point on, I decided to become educated in all your tricks and deceptions. I feared that sometime in the future you would make another run to restart this unhealthy relationship. I prepared my body to be stronger through exercise and better nutrition. I prepared my mind through meditation, faith in God and by surrounding myself with caring people.

A year later you sneaked back into my life. But you were not expecting how quickly I fought back. You expected to drain my resolve and spirit, yet the opposite happened. Your merciless grip was broken once again. Even though the six months left me with more physical and emotional scars, I grew stronger and more determined to keep you out of my life. I resolved not to fear you but to embrace the new me, braver and full of love for living.

You returned only a few months later but with not much determination. I beat you back with an ablation. I felt invincible and elated to know you did not have much left. It was a mistake on my part. Four months later, somehow, you were back in my life but ruthlessly spreading to other parts of my body. I was told there was no cure for me from your grip. Sadly, I will admit that it hurt so much to hear that you were staying in my life forever. I cried and fell into despair. But it was short lived, so do not get your hopes up!

The first three months were hard. I fought back with determination at a great cost. I could not eat or drink and was constantly nauseous. I lost thirty pounds and my will wavered so much that I almost wanted to quit, letting you win. But I stuck to it. After removing the last piece of you from my body, I was free again! The next six months were better. With the help of the hepatic arterial infusion pump, keeping you away was easier.

The following year was a blessing. Not you! Although we searched constantly every three months there were no signs of you. It seemed I overcame the odds and finally convinced you to stay away from me. That year was a period of healing, not only physically but emotionally. With time to reflect, I decided to become a champion against you. I met others who have struggled with you. With them, I have grown emotionally stronger and happier.

So I do owe you some gratitude as weird as it sounds. It’s true that our struggles are our best teachers in life. You taught me to be strong, to trust in others and to appreciate the small stuff in life. Because of you, I have met so many amazing people that have enriched my life. For that, I will always be thankful. But please, do understand that I still do not want you in my life! From this point on, I will do my best to help others fighting against you and to spread the word on how to detect your presence early.

I do not know what my future will bring. You have returned again to challenge my resolve. As we explore my options and create the battle plan against you, I do want you to know that you may one day beat my body but you have lost your fight against my spirit long ago. Understand that this is a one sided relationship now. You do not define who I am. I know who I am!

A Survivor

God and Cancer

Birds

by Belle Piazza

We hear it on a semi-regular basis here at The Colon Club. “If there was a God, why would he let me suffer like this?” I don’t have an answer to this question – none of us do. We all struggle to understand the why behind this disease. What strikes me though, is the selfishness of the question. Not that I haven’t asked this very question myself; I have, many times. People who have held fast to their faith their entire lives suddenly question the presence of a higher being when THEY are struck by cancer. We tend to live in our own little bubbles and naively believe that if we live a good life, do good to others, walk a straight and narrow path, eat right and exercise that we will be exempt from all the evils and suffering in the world. God evidently has a different plan. A childhood friend of mine who attended Catholic High School told me that during his years there he was asked to draw a picture of God. He drew a light switch. “People turn the switch on when they need to turn to God” he explained. “And when things are going well for them, they flip the switch off”. Somehow we can come to terms with suffering when it’s the “other person” but when the “other person” is us, our illusions of how the world works are suddenly shattered.

There are those who live a long, healthy and happy life, free from suffering and pain; but I really believe they are the exception to the rule. If you take the time to get to know a person; any random person; and peel back the layers of their life, you’re likely to reveal that at some point, they have endured pain and suffering to one extent or another.

It’s easy to get caught up in our own little micro world and be oblivious to the suffering of others. Some say they can’t think of anything worse than having cancer. I can think of plenty. It’s sick, I suppose, to find comfort in knowing that others suffer more than I do – but sick or not, it helps me to keep things in perspective. A few years back a young family – husband, wife, baby and young child were driving through Oregon. It was winter and they took a side road as a short cut. It was a road that should have been closed. They got stuck in the snow. No one knew they were there. Eventually the husband set out to find help. After a day or so he froze to death. The following day a rescue party found the wife and children. Some nights as I lie in bed trying to sleep, knowing my husband and kids are all safe and warm, I think of this poor family and how horrific this man’s last few hours must have been. As he lay there in the snow, freezing cold, knowing that he was dying, pondering the fate of his family, do you suppose he wondered where God was?

It helps us sort things out when there is someone or something to blame. Victims of violent crimes can blame the perpetrator. Car accident victims can blame the other driver, alcohol or road conditions. I’m sure the father in Oregon blamed himself for ever having turned down that snowy road. Even victims of acts of God such as hurricanes, tsunami’s or fires can blame SOMETHING. With cancer, it hits out of the blue and we want answers – we want to know why – and we very much want to blame someone or something; and sometimes the only thing left to blame is God.

A cancer diagnosis is not without physical pain, but much of it can be managed. I think of burn victims and the 24/7 pain they suffer. When I think of emotional pain I think how fortunate I am to be the one with cancer and not one of my kids. I would live a hundred life times with cancer rather than have to watch one of my children live just one life with it. When I think of the mental challenges cancer presents, I think of people with mental illness and the daily hell many of them face.

The faithful either give thanks to God for curing them or blame God for their suffering. You can’t have it both ways. I lost a young friend to cancer a few years ago. He and his family were (are) devout Christians. Through their entire ordeal they never lost their faith in God or his greater plan. They all suffered, but stayed close to God and each other to get them through. If prayer healed all, it would have healed my friend Adam. It did not, but to this day, his family has not lost their faith.

We all have to come to terms with our circumstances. There is no right or wrong coping mechanism. Cancer strikes all faiths, believers and non-believers equally. When I was first diagnosed and learned that instead of “catching it early” as we had presumed, I was an advanced stage 3, I was completely shell shocked. I had always believed that everything happens for a reason. I believed in karma and I thought I’d lived a good life. I didn’t know what to think so I put my beliefs in a back corner of my mind to sort out later. When I’d made it to almost 3 years post surgery without a recurrence I finally dared to think I might be cured; only to suffer a recurrence at the 3 year mark. Once again the rug had been pulled out from underneath my feet.

Over the years I’ve come no closer to an answer or understanding than I’ve ever had. I still believe that everything happens for a reason. But I also believe that “reason” isn’t necessarily revealed to us in our lifetime. I believe that our human brain isn’t capable of comprehending the ‘real’ big picture. I hold onto these beliefs because I need something to hold onto. I can’t function thinking that all of this is completely random and cruel.

We can’t obsess over all the suffering in the world all the time. It would consume us and drive us crazy, so we need to compartmentalize it and hopefully, in our own small ways, try to make it better to the extent we can. When the suffering hits close to home, as with our own or a loved ones cancer diagnosis, learning to compartmentalize the pain and cope with our situations will challenge us in ways we have never before experienced.

For Adam and his family, faith and trust in God led them through their journey and continues to sustain them after his passing. For me, faith that there is a greater plan, even though I don’t understand it, helps me get through the day. I believe that all roads lead to one, and I believe there are many, many roads to get there. I wrote this blog not in an attempt to sway anyone in one direction or another but to encourage you to look beyond yourself and your own life when trying to understand the question of why. We all want simple, logical, straight forward answers. But when it comes to God and cancer, you’re not going to find them. That doesn’t mean you shouldn’t look. Coming to terms with God, or whatever higher power you do or don’t believe in, is a valuable tool to have. So question your faith, question God, seek out answers. Try to find something to hold onto that will help sustain you through your journey until we are all blessed to learn the real answers to the question of why.

Coping with a Cancer Diagnosis

sarahbike

by Eric Johnson

My first reaction after hearing my cancer diagnosis was, “I need to figure out a good way to kill myself before I become totally debilitated and worthless.” Another strategy that I considered was to become–by design–a rather nasty, disagreeable person who nobody would miss when I was gone. Sick, I know. This was, I should point out, well before I had been staged; before I had my first, baseline CT scan. I was panicking and jumping to conclusions, but being diagnosed with a deadly disease will do that to a person. Or at least, that’s what it did to me.

The surgeon who performed my fateful colonoscopy said it looked like Stage 2 rectal cancer, which he said carried a 75 percent chance of survival. Radiation and chemo went well, with my rectal tumor seeing a complete response—it was gone after the five-week treatment period. The surgery was quick and successful and when the pathology report came back, there was no evidence of lymph node involvement.

Things were looking good for my case, and I started to feel more positive about my life and prospects for the future. I recovered quickly from the low anterior resection that re-arranged my bowels, and I was getting used to the ileostomy, which was due to be reversed in a couple of months in any event. It was summer and I was busy recovering and taking some tentative rides on my bike, while dreaming about a future involving gardening, cutting firewood and cross country skiing.

My recovery and optimistic attitude was encouraging on one level, but it was overshadowed from time to time by the whole idea of being a cancer patient. I didn’t want to be a cancer patient. I desperately didn’t want to be a cancer patient. The designation didn’t fit my self image at all. I’ve always been a health-conscious guy; a fit vegetarian who rarely saw a doctor and never spent a night in the hospital. Now I felt like a vulnerable loser, hanging around the local cancer center—whether I eventually got cured or not.

Meanwhile, I tried to mentally prepare for a potential upgrade to Stage 4. Hey, it happens. As an active member of the Colon Club online message board, I have many friends who started out with a low number and wound up with advanced stage disease. A good percentage of them have died. That’s how this malady tends to play out for far too many of its victims.

This is not to say that I was moping around and otherwise sweating out a turn for the worse. As far as I was concerned, my odds of living a long life were pretty good. What helped a lot was remaining active—both physically and mentally. I kept working fulltime and pursued my passion for bicycling with a new sense of purpose. When I wasn’t recovering from surgery, I was riding my bike and getting stronger in the process. And when I wasn’t riding my bike, I was gardening and/or cutting next winter’s firewood. I told anyone who would listen, “I’m too busy to get sick or die.”

And then, like a nightmare or the plot of some television soap opera, a 7 mm spot turned up on my right lung in a routine follow-up CT scan some 15 months after my original diagnosis. The radiologist checked my previous scan, and discovered a 5 mm spot in the same location that had been missed. Since it had grown in the interim, it was pretty suspect. Unfortunately, it took the better part of that summer, and numerous tests, including a needle biopsy and partially collapsed lung, to positively identify this spot as a metastasis–a malignant tumor. I had suffered mentally the whole summer, waiting on a final verdict. At times, it became nearly unbearable. I tried to clear my mind with exercise and work, and both provided significant—but temporary—relief.

Now, realizing that my odds of survival had been reduced to near zero, I knew I’d had enough. “I can’t live like this,” I told myself with a mixture of despair and defiance. “I can’t continue to live in an atmosphere of fear and dread.”

A friend of mine at the Colon Club, who has since died from her disease, put it plainly. “You have to develop coping skills,” she explained. “You have to come to terms with your new reality.” I was intrigued—inspired. Coping skills, eh? You mean I can learn to build a decent life around this tragedy? What an interesting challenge.

I’ve never been one of those people who believes I’ll be cured somehow, against all odds. I have no religious convictions. (Heck, I’ve never even been indicted). But that doesn’t mean I can’t be optimistic about my future, however long that happens to be. I can look forward to this afternoon’s bike ride. I can cut enough firewood to heat the house next winter, just in case I’m around to see it—and take great pleasure in doing so. And if I’m not around to enjoy the fruits of my labor, someone else will be. I can gain satisfaction from the small things in life—and the big ones. It boils down to attitude. It boils down to living the life I want to live.

I mentioned this idea to my local oncologist, who rarely said much, none of which was ever profound. “If you spend the rest of your life worrying about cancer,” he unexpectedly pointed out, “you’ll be wasting the rest of your life.” I was impressed by that logic, and remain so. As a result, I started to make longer-term plans for my life. Why not?

Still, lingering doubts remained. Concerned about the wisdom of someone in my position taking such a bold approach, I sought a second opinion from my oncologist at Sloan-Kettering in New York City, who has a well-earned reputation for no-nonsense, give-it-to-you-straight counsel. “Doc,” I said, “I’m making longterm plans. Does that make any sense?” She responded, in her typical, curt way, “That’s the only thing that makes any sense.”

I pondered both these statements and incorporated their wisdom into a motto and strategy that continues to guide my thoughts and actions: “Live your life like it’s going to be a long one, because it just might, and then you’ll be glad you did.” This approach has allowed me to take on new, professional responsibilities and pursue opportunities that have been rewarding, both financially and professionally. They’ve helped me recognize the value of my continued existence. Cancer or no cancer, self-validation is a wonderful thing.

My plan is to retire from my current job in five years, when I’m 60, and return to manage the family tree farm in Wisconsin and live out the rest of my days doing what I’ve always wanted to do.

Statistically speaking, this is unlikely to happen. I have active, multiple-recurrent disease, am currently on chemo and in all likelihood, I’ll run out of treatment options at some point, and succumb to the disease. On the other hand, I’m exactly five years out from a Stage 4 diagnosis which is, in and of itself, highly unlikely. So, who knows? I certainly don’t, and I don’t spend a lot of time worrying about it. I’m going with what’s worked so well so far, and hoping for the best. I remain a happy, optimistic individual—something I never imagined after hearing those terrifying words, “You have cancer.”

Eric Johnson is a writer and magazine editor who currently lives in Upstate New York. As of this writing, he is five days away from his five-year anniversary of being diagnosed, and 39 miles away from 10,000 miles logged on his bicycle since that date.