To Tell or Not to Tell

After a cancer diagnosis, it’s not always easy to decide first who to tell and then how much to tell them. Some want to keep it private and only tell a few select people. Others may decide to keep the information given to a bare minimum. In my case, I’d had a fairly active social life before I got sick and my absence and subsequent hospital stay were noticeable. In fact, I was texting a friend from my ER bed to pass the time. Two years earlier I had been diagnosed with bipolar disorder and I learned that I did better when I had my “tribe” of friends and family. So when I was diagnosed with cancer, I was open from the beginning about what was happening to me. When I was diagnosed, I spent a week in the hospital undergoing tests. Even if I had wanted to keep my diagnosis a secret, it would have been difficult. A week long stint in the hospital is hard to hide or explain away.

I also knew I needed friends and family to get through what was to come. Breast cancer runs in the family, so the effects of chemotherapy in general were not an unknown. Then as I got more information from my doctors in the hospital, I really understood I was in for a fight. Those around me couldn’t do it for me, but they could be there for me. They could help me feel less alone. They could pick me up when I was down. But they could only do that if they knew.

The biggest reason, at least in the beginning, that I was so open about my diagnosis was that talking about it made it real to me. A cancer diagnosis, especially at such a late stage and at such a young age, can be very surreal. I was a week from my 33rd birthday and suddenly I had both a surgeon and an oncologist talking about surgery and chemotherapy. I wasn’t yet 33 and I was about to fight for my life. That’s not supposed to happen at 32. Colon cancer isn’t supposed to happen to a 32 year old. But it was, and I couldn’t go back in time to keep it from happening. So I had to move forward and move beyond the surreal nature of the situation. Talking about it helped me make that transition.

So from the very beginning, I was open with everyone about my diagnosis and treatment. I started a CaringBridge website (here). CaringBridge also allowed me to keep friends and family updated all at once. That even included friends of my parents as well. While there were certainly friends I kept up to date personally, having a CaringBridge website made giving medical updates easier. There have also been nights in the months since that I’ll go back and read it and read the comments people have made. It reminds me both of how far I’ve come and how many people are rooting for me.

I talk about it now because I want people to know it can happen to anyone. It happened to me because I have a genetic mutation in the MLH1 gene, which is one of the genes tied to Lynch Syndrome. But it’s happening to more and more young people as time moves on. I’m sure the statistics have changed in the two years since my oncologist first mentioned them, but at the time he told me that 1 in 10 new cases of colon cancer involved a patient under the age of 50. Right now, colonoscopies are recommended for those over 50, though there are those moving for that age to be lowered. Even in the over 50 population, not enough people get a colonoscopy. I know the prep for a colonoscopy isn’t fun. I’ve had one. Yes, there are easier tests that look for colon cancer, but if it spots anything, you’ll need a colonoscopy anyway. And only a colonoscopy can remove polyps before they ever become cancerous.

I talk about it now because I want people to talk about it. Talking about poop isn’t a cool thing. It’s thought of as private, but it can save your life. Colon cancer and Lynch Syndrome left me with a permanent ileostomy bag. I poop into a bag and will for the rest of my life. But you know what? The ability to poop into a bag saved my life. It comes with its own challenges. But I’ve learned that as human beings, we can get used to anything if we approach it with an open mind. So I’m going to keep talking about it until everyone listens.

Living With An Ileostomy, Part 2

Going back to my own story, the first six weeks with my colostomy were a nightmare. I ended up in rehab thanks to complications from surgery. While in rehab, I ended up back in the hospital with a pleural effusion. Two weeks after leaving the hospital, I landed back in the hospital to have a liver abscess drained. Through that entire time, it didn’t matter who changed my ostomy bag, I had leaks and bag explosions often. My mom was the one who learned to change the bag, and whether it was her who changed the bag or one of the nurses, I had leaks constantly. That was until my hospital stay to drain my liver abscess. The hospital’s ostomy nurse suggested a different bag to try, along with an ostomy bag. After that, leaks were a thing of the past and I was getting several days out of each bag change. After that, life got a lot better. I got through chemo with a colostomy bag. Eventually, I learned to change the bag with help, and then finally on my own.

Then I had a check in with my surgeon and suddenly I had a decision to make. By that point, my diagnosis of Lynch Syndrome had been confirmed. I knew I was at high risk of a second, unrelated colon cancer within the next ten years. I would need a colonoscopy every year for the rest of my life. During the discussion with my surgeon, I learned I was not a candidate for a “j-pouch.” A j-pouch is an internal pouch made surgically that connects the end of the small intestine to the rectum so that an ostomy bag isn’t needed. I wasn’t an candidate because of the size and placement of my original tumor. If I opted to remove my colon, I would have a permanent ileostomy. He also warned me that likely wouldn’t be happy with a straight reconnection of my colon. My tumor had been quite large (softball size) and close enough to my rectum that I would likely spend far more time in the bathroom than I wanted. I had several months to make my decision. With several months to think and pray about it, I ultimately concluded that it was in my best interest to remove the rest of my colon (along with other body parts, but that’s a topic for another post).

The first six to eight weeks after my ileostomy surgery were somewhat difficult. The difference this time was that I expected it. I was also used to changing the bag and leaks didn’t phase me. As it turns out, I had a leak just last night. Leaks now are annoying, but not the end of the world. I had expected to need a different type of bag than my colostomy bag, but as it turned out, the best bag system for my ileostomy was the same one I had used for my colostomy. When I had a colostomy, I only had to change my bag once a week. Now that I have an ileostomy, I have to change it every four days. This is largely a result of the consistency of the stool. Since it is more liquid, it is better able to get under the seal of the bag. Stool is very acidic on skin and keeping the skin around the stoma healthy is paramount. Broken skin is very painful and can keep the bag from sticking. Below I’ve included the things I use to change my bag.

In general terms, I first cut the hole in the new bag using a template from earlier changes. After putting on gloves, I use the adhesive remover wipes to remove the pouching system itself and any adhesive that is left behind. Without the remover wipes (or some other type of adhesive remover), you can easily damage the skin. Also, any adhesive left behind can keep you from getting a good seal and can lead to leaks. I make sure I use either a wet wash cloth or a wet paper towel to clean around my stoma. I don’t want any adhesive or adhesive remover left behind. I then change my gloves. I use two pairs of gloves so I don’t get stool on my skin under the new bag. I then use the stoma powder just around my stoma and then use the barrier wipes to get that powder wet. I do it again in a process called “crusting.” It both allows the skin underneath to heal and protect it from further breakdown. Next, I take out the Eakin ring and mold it to the shape of my stoma. It’s very sticky and easily moldable. Finally, I put on the new bag. On those days when I want extra confidence in my bag, I will use the extender stips around the bag. I don’t find them absolutely necessary, but they do give me the confidence that I have the new bag secure. I change my bag while laying on what amounts to a diaper change pad. I learned to change it lying down due to problems with my leg after my first surgery. I only have to wait 12-24 hours before getting it wet to allow the adhesive to fully adhere. I do it laying on the pad because the pad is easily washable if my ileostomy spurts while I’m changing it. I learned early on that eating a couple marshmallows about 30 minutes before the change can stop up my system long enough to change the bag. An ostomy has a mind of its own, but marshmallows for me help nudge it to my whims.These days, nearly 2 years after my colostomy, it only takes about 15 minutes to change it, and then I don’t have to worry about it for another four days. It’s now simply part of my routine.

Introduction

Welcome to my new blog, Faith & Cancer. My name is Jacqueline and I’ll be your host. The long version of my story can be found in the links about, but the short version is that shortly before I turned 33, I was diagnosed with stage IV colon cancer. A few weeks later, I was diagnosed with Lynch Syndrome as well. The combination of surgery and chemotherapy got me to NED status, or No Evidence of Disease. I’ve now been cancer free for nearly 2 years.

A cancer diagnosis is not an easy thing to live with. A stage IV cancer diagnosis is an even harder thing to live with. How do you continue to live your life even as you wrestle with your own mortality? Without question, my faith is what got me through. I belong to The Church of Jesus Christ of Latter-Day Saints. The world knows us as Mormons. I grew up in the church, learning about where we came from and where we’re going. I learned of my Savior, Jesus Christ and that He died for you and for me, and everyone else. I learned about so many things, but it wasn’t until I was diagnosed with cancer that all the things I learned became real to me.

I’ve started this blog to share my thoughts of my journey thus far and to share what comes next. I’m cancer free now, but I’m still at relatively high risk of it returning. Lynch Syndrome means I’m at higher risk of various cancers. My last surgery left me with Ovarian Remnant Syndrome. My health journey is far from over. My spiritual journey will never be over. Cancer forever intersected the two.