The Cancer After Cancer

Andrew Elder

by Andrew Elder

To paraphrase Nietzsche: that which doesn’t kill you will often leave you flat broke. It’s the side-effect of cancer that often gets overlooked in movies, books and blogs. And it’s a quiet affliction. Even 5Ks or bake sales raising money for families with a cancer diagnosis don’t often say; “Hey, we’re frickin’ BROKE here!” It’s the “after-cancer”, the one that even the cancer you beat can leave behind, the cancer of financial destitution. I’ve been there, and I’ve been through it, and whether you’re dealing with a nasty diagnosis right now or you’re years past your treatment, you can do this. If you’re sucking enough wind to read this post, then you are a survivor right now today. And if you can kick cancer’s ass, then credit cards and medical bills and Bank of America don’t stand a chance!

As for me, my name is Andrew Elder. I’m a resident of upstate NY in the Capital Region area. I’m a seven-year Stage 3c colon cancer survivor and a proud former Colon Club model (Mr. February 2010 baby!). I’m also a singer/songwriter, a personal finance nerd, a happy husband and DIY homeowner, a US Navy veteran, and a rabid food and exercise nut…except for running. Running doesn’t like me.

I often say that considering I didn’t – you know – die, cancer was the best thing that ever happened to me.

Surviving cancer gave me much-needed perspective, and a new philosophy: life is too short to be anything other than free. As I worked my way through surgery and treatment I became profoundly grateful for each day, and realized that the way I’d lived and the choices I’d made had put up cages around me. I was overweight because I ate garbage and sat around too much. I was constantly stressed because I had a boatload of debt, no savings, and no real career. Consequently, I had a lot of self-loathing, no peace, no hope, and no confidence in my ability to change. I’d accepted unhappiness…accepted that life was, well, kind of crappy.

But let me tell you, being given a 25-percent chance to live for the next five years is a fairly effective wake-up call.

That diagnosis shook me out of my inaction. I decided that no matter how many days I had left, I was going to live every one of them as best I could, without regrets. But how can you enjoy life if you hate the way you look and feel; are broke, stressed and frustrated and worst of all, hopeless? That’s not living, that’s just being alive.

With that realization fueling the fire, I created a plan and started taking action.

I’d lost 70 pounds thanks to the “chemo diet,” but I was a gaunt wreck. I began exercising again, starting with slow walks and weak calisthenics, and soon graduating to weight-training, biking and hiking, and swimming (and yes, even a little running).

On the financial/career front, I accepted the fact that I was myself the cause of my problems, but I was also the solution to them. The only thing standing in my way was ignorance, so I started reading every personal finance book I could get my hands on, applying it to my life, then putting that knowledge into action.

I’m not a certified financial professional (yet!) but I’ve learned some hard lessons about money and discovered how to win financially, regardless of how much income you make or how much debt you might have. Physically and financially, I engage in that new-age buzz-phrase; “intentional living”. That’s my key to any turnaround – physical or otherwise – and it’s what I’ll be writing about here. And if what I’ve learned can inspire or inform you in any way, I’m proud to share it.

Until next time, I’ll leave you with a secret: happiness isn’t a result; it’s a choice – and it’s a choice you make every day, regardless of your current circumstances. It’s not about what your life is like today, it’s about what you’re doing today to get where you want to go – physically, financially, relationally, etc. Accept that you can’t control everything or change everything at once; all you can do is all you can do. And if you’re honestly doing all you can each day then smile; you’re already winning!

The Pain in My Back

Chiro Tree

 

by Belle Piazza

As I pulled out of my driveway I realized I’d forgotten my cell phone. That’s not going to help me in getting ahold of my chiropractor who I’d just called and left my number with on her answering machine. No time now though; I had just a little under two hours to drop off a load of toys at the 2nd hand store, return a pair of shoes I decided I’d never wear (despite how comfy they felt) and then pick up my son at his Bizarre Foods Cooking Class. If I had time, I’d drop by my Chiropractors office while I was out and see if I could book an appointment for later in the week.

I didn’t have high hopes for said appointment. My back has been hurting for months and is slowly getting worse – just as the tumors have continued to slowly grow and multiply. I’ve always assumed the back pain was the tumors pushing on nerves, but the past few weeks I’ve been wondering if there’s something else causing the pain and perhaps I should check with my chiro.

I dropped off the boxes of toys at the thrift store and returned the shoes. I was making good time. Having taken 2 Vicodin earlier that morning, I didn’t have much inclination to shop as I was feeling a little loopy. My last stop before heading home was the Chiro’s office. Dr. Michelle’s office is small. It’s just her, doing chiropractic and nutritional counseling and her daughter in law who does massages. She’s clearly not in this for the money. She has a true desire to help people and make them feel better. She’s also very chatty, unlike many doctors. I was a little concerned I’d get tied up in conversation and have to cut things short in order to pick up my son on time but I was willing to take that chance considering how much my back hurt. The 2 Vicodin and 2 Ibuprofen I’d taken earlier just wasn’t cutting it.

I walked in and Dr. Michelle, who was just finishing up with a patient, cheerfully greeted me. People take their time in the lesser populated areas of the northwest. Cashiers at the grocery store exchange pleasantries with their customers. People smile and wave to each other as they pass on the streets. Even not so small towns have many pockets that FEEL like a small town. When you’re in a hurry it’s a little frustrating at times, but overall, I love it and it’s one of the reasons I enjoy living here.

Dr. Michelle’s records indicated that it had been a year and a half since she’d last seen me and there had been some big changes. Her new cocker spaniel puppy was now a young dog and causing just as much trouble as ever. She had decided to no longer accept insurance – but charge a flat $25 for each visit. And two months ago, she lost her husband to cancer. Well, that did it for me. Right before her eyes I slowly fell apart as I tried my best to give her my condolences. She profusely apologized, remembering that I have cancer.

“That’s not why I’m upset” I assured her. “I just went through a similar conversation with the owner of the dry cleaner where we take our clothes, who recently lost her husband to cancer.” I shared the story and conversation I had with the dry cleaners wife (in my earlier blog “Take That Cancer!”). Dr. Michelle’s husband went quickly – just 8 short days after he was diagnosed. He didn’t suffer she told me. And he refused all treatment – that’s not what he wanted. The last two days he was pretty much unconscious. She told me she felt his soul leave his body 3 hours prior to his body physically dying. Dr. Michelle is a religious woman and knows in her heart that her husband is in heaven with God and this brings her peace. But she misses him. “I never had to open a door myself. I’d always call him before I left work to let him know I was on my way. It’s the little things I miss.”

Dr. Michelle examined my back and told me I had 3 ribs out of place “No wonder you’re in pain!” she exclaimed. She adjusted me with her little “clickity punch” as I call it. It was a little uncomfortable, but not nearly as painful as what I’ve been living with. I knew that it would take a few days to really notice a difference, but I was hopeful. Dr. Michelle talked to me for some time after the adjustment, until I heard another patient come in. She would have continued to talk as long as she felt it was needed, because that’s the way she is, but I know what it’s like to sit and wait in that waiting room hurting, so I finished up our talk and opened the door for her.

I cried so much during that appointment. It was the pain that’s been gradually yet persistently chipping away at my strength for months. It was learning of another passing from this terrible disease. It was seeing this woman who lost the love of her life too early and left wondering why. It was my own emotions that I’d been bottling up inside me as I’ve observed several of my friends never ending strength and courage show cracks due to recent drama in their own lives; much of it involving cancer – and not just mine. Some help I was to Dr. Michelle.

I tried to assure her that although this was really hard for her, that her husband is better off. I shared with her how hard it is mentally, emotionally and physically to live with this disease. In between sobs and snorts and blowing my nose I tried to make her feel better. This was not one of my finer moments, in fact it was pretty pathetic, but I tried.

Dr. Michelle gave me a big hug good bye and told me she was glad I came in and we had a chance to talk. She said she felt better. I hope she did. As for me, for the first time in months I slept without the assistance of narcotics. While not 100%, I’d say my back is at least 70% better and I’m hoping for more. That’s not to say that the tumors aren’t the cause of these ribs getting pushed out of place. But I’ve found one more tool to deal with that in Dr. Michelle.

I don’t know if it’s because the pain has subsided so greatly or my conversation with Dr. Michelle, but I do feel a little calmer. Do you wonder if her deceased husband put a bug in my head to call her? After all I suffered for months without ever thinking of seeing my chiropractor and then suddenly these last few weeks the idea just sort of came to me. Ironic that while I couldn’t reach her by phone she had an opening at the exact moment I stopped by her office. Financially it’s a tremendous help to just incur a $25 co-pay. Or you could say I’m just a blithering idiot for not thinking of this sooner. All could be said to be true. And the phone I forgot? When I pulled out my checkbook, there was my phone right next to it. So theoretically she could have called me and we could have booked an appointment for a later date. Coincidence? Divine intervention? I don’t know. All I know is that I slept better last night than I have for months. So whether her deceased husband led me to her, or my chemo brain finally woke up and figured it out, it’s a win for me either way.

Dysfunctional Communication

todd and leighann

by Leighann Sturgin

My husband is a man of few words. Communicating is a challenge for us. Our communication is a bit dysfunctional. Mosby’s medical dictionary defines ‘Dysfunctional Communication’ as communication that results from inaccurate perceptions, faulty internal filters (personal interpretations or information), and social isolation. This in a nutshell describes my marriage. The other day my husband and I managed to have an actual conversation that wasn’t about our kids, the schedule or what’s for dinner. I shared with him that when he said “Sometimes you are” it was the second most hurtful thing he said to me during my cancer journey. Years ago, during the worst part of our cancer journey, I told him I felt like a burden to him and he admitted, “Sometimes you are.” Those three small words ripped through my heart like Wolverine’s claws through…well anything. The number one most hurtful thing was said by my son, but I will save that story for another day.

It’s one thing to feel like a burden, but it’s truly a horrible feeling to know that you are a burden. Every day for years I awoke and wondered if today is the day it will all be too much for him. It’s not that he’s a big jerk, but how much can one person take? I had no choice. If I wanted to live I had to fight. But he had a choice (or so I thought). He could leave if he wanted. According to studies, the divorce rate for the chronically ill is 75%. And the risk of divorce increases 7 fold if it’s the wife who is diagnosed. Apparently, many people choose to leave their spouse, especially husbands. I can’t imagine how it must feel to watch someone you love suffer so much for so long. We patients are dealing with the physical pain but I think the emotional pain our caregivers deal with is greater. If you think about it, physical pain we only feel once as we experience it, but emotional pain has a way of hurting us over and over again. I remember being in physical pain during treatment. But when I think about it now, I don’t actually feel that pain again. Emotional pain is like a bad burrito, it just keeps coming back up. All the stress, fear, anxiety, anger, sadness comes flooding back and the hurt feels the same again.

Most of the time while I was downplaying how bad I actually was, I thought that he thought I was being a drama queen and exaggerating everything. He never said or did anything to make me feel that way. It was all in my head but to me it was REAL. We NEVER talked about any of it…dysfunctional communication.

Due to the loss of most of my intestines I am dependent on Total Parenteral Nutrition (TPN) which is fluid and nutrition via IV. Minerals such as magnesium, potassium and calcium can become imbalanced easily while on TPN. On one occasion, unbeknownst to me, my magnesium level dropped dangerously low. I had that pins and needles feeling you get when your foot falls asleep all the way up my legs so badly that I couldn’t control my leg muscles and I couldn’t walk. It was around 10 pm. Our two young children were asleep in bed and there was a massive snow storm dumping on us. My husband had to get our 4×4 truck to drag our car out of our long snowy driveway as all 4 of us didn’t fit in the truck. He then had to wake the kids up, carry them to the car and then come back and carry me uphill to the car at the end of the driveway. He drove us to the ER, dropped me off and returned home. Once home he had to put 2 cranky, tired kids back to bed and try to get a few hours of sleep himself. Then he had to get up, get the kids ready and off to daycare before heading to work himself. All the while worrying about me. This is one example of dozens of “fun” times we had. I’m sure every survivor has those kinds of stories when something goes wrong, everything goes wrong. I felt like a burden. Webster defines ‘Burden’ as 1) that which is carried; load. 2) something oppressive or worrisome. I felt like a burden. I was a burden.

We humans have an amazing talent of replaying hurtful words in our minds and letting them hurt us again and again. I am a burden. I am a burden. I told myself this over and over for years. Don’t complain. Don’t tell him, or anyone, how bad you really feel or how much it really hurts. WHAT A LOAD OF CRAP! Cancer is the burden. Not me!

As I said before, my husband, Todd, is a man of few words. He doesn’t show emotion. Sometimes I think he doesn’t have any. He isn’t romantic or sensitive at all. He’s terrible at giving and receiving gifts. However, he is full of integrity, completely loyal, works hard, can fix anything and is extremely adept at finding humor in every situation. So a few days ago, for no particular reason, we had an actual conversation about us. I told him how much his words hurt me and how that hurt developed into resentment and how I still worry if he will support me if I have another recurrence. I reminded him that he has a choice; I don’t. He didn’t even remember saying those three little words that hurt me so deeply. “Sometimes you are.” DIDN’T EVEN REMEMBER! He said he was sorry. He told me “I made my choice 17 years ago when I said ‘for better or worse and in sickness and in health’.” My husband loves me.

Is there someone you resent for something they said or did? For something they didn’t do or say? Are you participating in dysfunctional communication with your caregivers or loved ones? Please tell me my husband and I are not alone.

Take That Cancer!

Angie, Doug & Belle

by Belle Piazza

I walked into the dry cleaner’s to pick up my husbands clean clothes the same way I have dozens of times over the past eight years. I greeted the owner the same as I always have, petted her little dog that loves to chase it’s ball and dumped my husbands dirty clothes on their counter. We exchanged our usual greetings and then she asked me if it would be all right if she asked me a question. “Of course” I said, having a good idea of what was coming.

I was on my way that afternoon to have my 5FU pump disconnected, wearing what I have come to refer to as a “chemo shirt” – a t-shirt with a low neckline so the nurses can easily access my port. The IV line was visible to anyone who saw me, including of course the owner of the dry cleaner.

As her eyes welled up just the slightest bit with tears, she asked me in her broken English, her family all being from Korea, “Is it better having lived?” – and then it was time for me to tear up. As I fought to hold back the tears, I simply told her “It’s really, really hard. It’s easier on my family because they still have me here, but it’s harder on me. For your husband, it was easier on him – having passed so quickly – but it’s harder on you.” “Thank you” she said. “That makes me feel better knowing that. I always wondered”.

I don’t know her name but I know her story. Her husband was diagnosed with colon cancer two years ago. He went through chemo and then surgery – and that’s as far as he got. He died in the hospital from complications following the surgery. I don’t know any further details other than the fact that his family was understandably, completely devastated. His surviving wife knows that I have colorectal cancer. I don’t advertise it, but when I lost my hair from Irinotecan it was kind of obvious something was going on. She asked about my hair and when I told her it was because of the chemo I was on, she shared with me that her husband had just been diagnosed with colon cancer and had started treatment.

As I follow my friends stories on Colon Talk, I can’t help but wonder who will go quickly and who will go slowly. Who will survive and move on with their lives and who will linger on, coming to The Colon Club for the help and support we have to offer them until it’s their time to go – forever. One of our members recently suffered a recurrence in his lungs despite aggressive treatment. He was angry and even mentioned it was all he could do to keep from eating a bullet, but wouldn’t because of his family. That comment hit me hard. Not because I was worried he’d kill himself, I didn’t get that feeling. What hit home was knowing how hard it is to live for years and years with this disease. Wanting to be alive, to live life, to spend more time with your family and friends – but knowing the price you pay to be living with cancer.

A former member of Colon Talk, Gaelen, put it aptly – “living with cancer is a marathon, not a sprint”. That about sums it up. You have to pace yourself. You have to accept what you can do and let what you can’t do go. Having parts of your life taken from you against your will and accepting this doesn’t come easily or quickly – but the sooner you can come to terms with the changes, the quicker you can go about enjoying those things that are still within reach. And of course this is a constantly changing scenario. As time goes on, cancer takes more and more and gives back little. Having lived with cancer for almost seven years, I feel like I’m a bit of an old pro at it. After awhile, it almost becomes a game. How much can I do and still have quality of life? How much can I trick the cancer into letting me do more without paying the price of fatigue, illness, blockages and pain? It’s an ongoing challenge. Some days I win, some days I don’t.

And so we carry on. Spending more precious time with those we love, doing the things we love. For every day I have on this earth, I think of it as one more for me, one less for cancer. I know that cancer will eventually win, but in the interim, I’m giving it a hell of a fight. I know I’m playing a good game.

When I left the dry cleaners that day I asked the owner if it was all right if I gave her a hug and she said yes. I held her and she cried just a little. She’s such a strong woman. She thanked me and said she had no one she could ask these questions of. I assured her she could ask me anything. She seemed to relax just a little and I saw gratitude in her eyes. I made it to the car before I completely fell apart. Yes, it’s easier on the patient when they go quickly. They are released from the pain and suffering of this world. But their families are left to grieve. For those of us who aren’t taken quickly, for whatever reason, we live on with our own challenges and pain. And each of us does our best to live with the cards we’ve been dealt, if for no other reason than to say take that cancer – I’m continuing to thrive despite whatever you throw at me.

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.