Two Years

Today is my “cancerversary.” Two years ago today, it was confirmed that I had stage iv colon cancer. By the point the final biopsy results came in, everyone was all but sure it was stage iv colon cancer. I honestly don’t think I’ll ever forget that week I spent in the hospital. It began on a Friday morning, when I woke up about 6am to go to the bathroom, only to find blood in my stool. My parents were already up and my dad working (he worked from home). My mom had had surgery #7 on her ankle only two days before and was still off work. My dad had a phone call that morning he couldn’t skip, so I drove my mom and I to the nearby ER – an ER unconnected to the main hospital. After all, you don’t go to the ER alone.

I drove my dad’s Jeep Grand Cherokee because its backseat could accommodate my mom’s wheelchair and we arrived about 7am. It was quiet, so it didn’t take long to be taken by to an ER room. My mom asked what they would do and I’ll never forget the nurse’s response. He told me they would likely do some blood work to make sure I wasn’t going to bleed out then send me home to follow up with a gastrointestinal doctor. What neither I, nor the nurse, knew is that the results of my pelvic ultrasound the day before strongly recommended a CT scan.

Even when an ER is quiet, running blood work and waiting for scan results takes time. I remember feeling pretty good overall and texting with a friend while in my little cubicle. About 8am, I got a phone call from my primary care doctor wanting to schedule that CT scan. I told her I was already in the ER and they were going to do it and she wished me luck. It took quite some time for the CT scan results to come in. We later learned that the doctor was on the phone with the GI department at the main hospital downtown. The doctor had called them because the CT scan revealed a spot on my liver the size of a walnut that hadn’t been on a CT scan done two months earlier. The group of doctors decided to admit me to the hospital to run tests and find out what was going on, rather than leave me to wait for my already scheduled GI appointment two weeks later. That was my first time in an ambulance – that I remember anyway. My mom then called my dad and together they figured out how to get my mom home from the ER and together get to the hospital downtown. That’s a funny story for another day.

I spent Saturday night trying desperately to get cleaned out well enough for a colonoscopy. It was a nightmare and that’s putting it mildly. The colonoscopy finally happened Sunday evening and the doctor couldn’t get very far. I was pretty out of it following the colonoscopy and didn’t ask much, but when the doctor told my parents they were able to ask questions. Although it was a presentation the doctor hadn’t seen before, he was pretty sure it was cancer. As my dad tells it, the doctor was visibly upset. During the colonoscopy, the doctor took several biopsies that would hopefully give us the answer.

On Monday, I had an MRI to get a better look at the liver spot. Prior to that MRI, I had no idea I was claustrophobic. Now I know, and for every MRI I get a Valium ahead of time. On Tuesday the biopsies came back as suspicious but inconclusive. As a result, they biopsied the liver spot that same day. Wednesday was a day of nervous waiting. Thursday afternoon the liver biopsy came back positive for colon cancer and by extension, stage IV. That was June 28th, 2018. The following day I had my port placed before being discharged.

I’ve thought a lot about that week in the two years since. I wrote at the time that I was grateful that none of my doctors tiptoed around the elephant in the room. Even before the final confirmation on the 28th, I was seeing an oncologist and a surgeon. The liver biopsy was simply a confirmation of what everyone knew. At the time, and now still, I was grateful that my doctors were frank about what was going on. It really set the tone for my future discussions with those doctors, especially as we all discovered that I did nothing the easy way. I really came to like my oncologist when I moved from Wisconsin to Florida and would recommend him to anyone.

I find I’m much more grateful for the milestones now than I was before my cancer diagnosis. This last Christmas meant so much more to me. It didn’t pass me by like so many others had before. I spent the Christmas before feeling like garbage and ultimately opened my Christmas presents while in the hospital. Next week will be my 3rd birthday since diagnosis and I will turn 35. Once upon a time, that round birthday might have bothered me, especially as I’m still single with nothing on the horizon. But now? Now I’m grateful to be here. My life isn’t perfect and cancer plus Lynch Syndrome have certainly left their problems behind. But two years after a stage iv cancer diagnosis, I’m still here and largely doing what I want.

Life’s Complications

Life is just full of complications. I’ve certainly had my own bunch of complications.Until the last few years, they were relegated to things like moving, finding new friends, a bout of depression, and ADD. Then a few years ago I was diagnosed with bipolar disorder. Thanks to some amazing people in my life, I found my equilibrium again. Two years later, I was diagnosed with stage iv colon cancer and discovered a whole new realm of complications and trials. The two year anniversary of my first hospital stay is tomorrow. It was during that week long stay that I was diagnosed. Including that first admission, I’ve had ten hospital admissions in the last two years. I spent 12 days in rehab after my first surgery because my surgeon stretched the femoral nerve going to my right leg. I’ve had a chest tube and two liver drains. I’ve had two major surgeries and a third to come in a few years. That first surgery unexpectedly left me with a colostomy. My second surgery purposefully left me with an ileostomy. I have a risky surgery yet to come to remove a piece of ovary accidentally left behind after my second surgery. And now I have a new complication.

I have what’s called a stomal fistula. In general terms, a fistula is an abnormal connection between two body parts or between an organ and the skin. As a general rule, fistulas aren’t a good thing and aren’t fun to deal with. Some are more serious than others. Mine is from my small intestine out to the skin where my stoma meets the skin. So instead of one hole with stool coming out, I have two. It makes changing my bag a little more challenging. It makes keeping my skin there healthy a challenge. I saw an ostomy nurse last week and she confirmed for me that it is a fistula and she gave me some tips on dealing with bag changes. She also recommended seeing a colorectal surgeon about it. It remains to be seen how serious it is. I’ll be making some phone calls tomorrow to see if I can see a colorectal surgeon anytime soon. I have to see a colorectal surgeon because they are the ones who manage ostomies. So hopefully I will soon find out just how big a complication I have on my hands.

It helps me to know this life was never meant to be easy. It was meant to be a time of testing and of trial. The Plan of Salvation helps us understand the role of trials in our lives. We agreed to come to earth, be given a physical body, and be tested to see if we would still follow our Heavenly Father with our memories of before forgotten. If we followed Heavenly Father and do as He asked, we would be able to live with Him again and even become like Him. We would be able to live with our family in Heaven forever. Being on earth means we all agreed to that plan. We agreed to be tested, believing that whatever happened to us on earth would be worth the reward of living with our Heavenly Father and our Savior Jesus Christ again.

The fall of Adam and Eve means we’re living in a fallen state and subject to the problems inherent in mortality. Without the fall of Adam and Even though, we couldn’t have children and create families. The fall of Adam and Eve means we can feel true joy, but it also means we can feel sorrow. Without sorrow, we would never know true joy. The combination of the Fall and mortality means we are subject to sorrow and sickness and infirmities. Another part of the Plan of Salvation included giving each of us the ability to make our own choices. Sometimes our choices hurt others, but God will not interfere in the choices of anyone.

And so life is full of complications. But each of us has our own trials and struggles to deal with. Some of those struggles are a direct result of our own decision making. Some are a result of another’s choices. And some are just a part of living in a fallen world. They aren’t anyone’s fault; they just happen. The Plan of Salvation is the answer to why bad things happen to good people. It is the answer as to why I was diagnosed with stage IV colon cancer at age 32.

When A Loved One Has Cancer

At some point in your life, you’re probably going to have a friend or family member diagnosed with cancer (if not yourself). How do you deal with it? Here are some examples from my own life, along with some things you probably shouldn’t do.

The week I was diagnosed I was in the hospital from Friday morning to the following Friday morning. My parents spent the days with me (and a night at one point), but we had two golden retrievers at the time (and as of this writing, still do). There were things to take care of at home. My friends from my ward would come visit me in the evening, allowing my parents to feel comfortable going home knowing I wouldn’t be alone. One week between diagnosis and surgery, Family Home Evening was in my backyard. Following surgery, I ended up in a rehab facility. One Sunday while I was there, members of my ward came to sing to me. There must have been a dozen or more people there. It meant the world to me. When chemotherapy and the cold of a Wisconsin winter kept me home from church and weekly activities, my ward encouraged people to come visit – and they did. Throughout treatment, I had visitors again and again. I had chemotherapy every two weeks and for most of my cycles, two of my close friends came to visit.

So what can you do when someone you care about is diagnosed with cancer? Here are some ideas.

  • Continue being their friend. Most of us diagnosed with cancer can tell you stories of friends who dropped away when they were diagnosed with cancer. I had friends, good friends, who completely dropped out of my life. On the other hand, I got closer to people I hadn’t been before.
  • Meet them where they are. Treatment for cancer isn’t easy. It’s physically and emotionally tiring. Maybe they don’t have the energy to go out to the movies anymore. Instead, try watching a movie in one of your homes. But keep inviting us to do stuff. Let us decide our limits.
  • Instead of asking if there is anything you can do, pick something you can help with. Maybe that’s picking up groceries or watching their kids or finding a way to help with housekeeping chores. The number of things that need doing can be overwhelming, especially when you consider the overwhelming amount of medical information that accompanies a cancer diagnosis. For me, the best thing people could do for me was to come visit. Visitors were my window to the outside world.
  • If you can’t think of what to say, tell them you love them. Tell them that you don’t know what to say.
  • Make sure they know you are there and you’re not going anywhere. Fighting cancer isn’t something you do alone.

Here are some things not to do.

  • Don’t drop them as a friend. Even with a major trial on the way, they are still who you knew. And cancer isn’t contagious.
  • Don’t tell them everything is going to be fine. While my faith tells me that all will be made right in the eternity to come, that doesn’t mean everything in this life is going to be fine. And even if things turn out okay, that doesn’t address the difficult times in the middle.
  • Don’t start telling stories about how chemotherapy is so bad and won’t work or how so and so killed their cancer just by juicing. We’ve done our research and we’ve chosen to trust modern medicine instead of quackery.
  • Please, for goodness sake, don’t ever tell someone they got the “good kind” of cancer. There is no good cancer.

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.

Survivorship

It is only in the last 15 years or so that the medical community has paid attention to “survivorship.” As cancer treatments get better, more and more people are living beyond cancer. As a result, more and more people are dealing with the long term physical, emotional, and mental effects of having had cancer. Cancer, especially late stage cancer, fundamentally changes who you are; you can’t go back to who you were before your diagnosis. Cancer doesn’t stop impacting your life just because you’ve finished treatment or your doctor says you have no evidence of disease. For me, cancer changed how I looked at the world. It especially changed how I saw God and His relationship to me. It changed my relationship with the Savior as well. I’m sorry to say that I’m not sure I’d have made those changes without my cancer diagnosis, but here we are. Cancer has also changed my relationships with the members of my family.

Fundamentally, survivorship is about what comes next after cancer. It’s about what long term side effects survivors can expect. The medical community is only starting to discover that many of the treatments used to fight cancer have significant long term side effects. Many of those side effects were unknown because cancer survivors weren’t living long enough for those side effects to present. Doctors are only recently educating survivors on some of those side effects, but it’s important that primary care doctors are educated too. Once a patient has been cancer free for x number of years, their care is transferred back to their primary care doctor, who may or may not be aware that cancer treatments can have long term side effects. By long term side effects, I am talking ten years, or even more, from the end of treatment. Despite the many advances in cancer treatment, much of it is still extremely destructive.

Cancer treatment also leaves its own mental and emotional scars. One such scar is something known as “chemo brain.” Chemo brain is categorized by cognitive difficulties both during after chemotherapy. I was lucky enough not to experience chemo brain. For some people, chemo brain can be debilitating.

Even after cancer treatment is over and one is considered cancer free, there can still be that feeling of “doom.” It’s difficult not to think that every new ache or pain is cancer returning. Suddenly, it’s difficult to differentiate between a normal sign of aging or benign problem and an early (or late) symptom of cancer. It can make you feel paranoid and like you’re overreacting. It’s a difficult balance to find, between being vigilant and overreacting. Myself, I’ve been out of active cancer treatment since March 1, 2019 and I still struggle at times to find that balance.

The last thing I want to mention is making the transition from active treatment to surveillance. Emotionally, it can be a difficult transition to make. It certainly has been for me. In illustration, take my course of treatment. From my official diagnosis on June 28, 2018 until I finished chemotherapy on February 24, 2019, I saw one of my doctors about every two weeks. During my recovery from surgery, I saw someone in my surgeon’s office twice. The first was for staple removal and the second was a check in. While I was actively on chemo, I saw my oncologist every two weeks. I would arrive at the clinic for blood work, after which I would see my doctor and he would confirm whether my blood counts were high enough for chemotherapy that day. It was like that like clock work. Then his office wanted to know if I got sick because that could delay chemo, or worse, land me in the hospital. From June 2018 – November 2019, I had ten separate hospitalizations. So during treatment, you’re under near constant supervision. Then one day, your doctor declares you cancer free and you move to surveillance mode. Suddenly you go from seeing your doctor every two weeks to seeing your doctor every 12 weeks. You had your oncologist and oncology nurses to help you navigate your new medical world, but there’s no one there to help you navigate your new post cancer world. It can leave you feeling adrift. It can be a scary thing, and it was for me. It’s something I still struggle with from time to time. But like so many other things in the cancer world, you learn to live with it. You remember how to put one foot in front of the other and just keep going. Cancer treatment isn’t for the faint of heart. Neither is surviving cancer.

Staying Positive Through Trial – Part 2

Staying positive through adversity is also about realizing that happiness is truly in our own hands. Happiness is a choice. Can we look for the silver lining through the clouds? Remaining positive through trial is a choice. It’s not about a lack of negativity, but rather about choosing to trust in the Lord and trusting that He has it all in hand. He’ll never leave us alone. He can’t. Sometimes it feels like we are alone, but I promise you that we’re not. All we have to do is look.

I cannot begin to tell you how many times at night I begged my Heavenly Father to make things just a little easier. From that first week in the hospital when I was diagnosed all through chemo, I cried out to my Heavenly Father to make things even just a little easier. Until I was diagnosed with cancer, I truly didn’t understand what it meant when the prophets cried out to Heavenly Father. I learned that Heavenly Father won’t always move our mountains, but he will always help us climb them if we reach out to Him and ask for His help.

My knowledge of the plan of salvation is something else that got me through. I grew up in The Church of Jesus Christ of Latter-Day Saints and went through both primary and young women’s.  I’ve been learning about the plan of salvation since before I can remember. But it wasn’t until cancer that it went from an abstraction to something that could truly work in my life. The plan of salvation helps us understand the reason we are here on earth  and that there is more to come when our time here on earth is done. It tells us that sickness and affliction are not permanent states of affairs. We learn that we have a Savior, Jesus Christ, who died not just for our sins, but for every pain and affliction and sickness we would face on earth. The plan of salvation gives us hope by telling us that pain and heartache and affliction are not permanent. They help us grow and their time will end. We learn we will be resurrected and our bodies will be without fault. My body will be free of cancer and genetic defect.  And even if things are not alright in this life, they will be in the life to come. In addition, when compared to eternity, this life is but a small moment.

In the end, staying positive through any trial comes down to this question. Do you trust your Heavenly Father to see you through?

Staying Positive Through Trial – Part 1

When I started my blog, I had a list of initial topics. However, I asked a few friends if there was anything they would like to see me talk about. One of them asked me to talk about staying positive through trials. The more I thought about it, the more it seemed the topic was perfect for my first real post.

When I tell people my story, more often than not, they are surprised at how positive I am, and how positive I stayed through my battle with cancer and treatment. In the beginning, it wasn’t a conscious decision. Over time, it certainly became that, but it didn’t start that way. I remember during my first hospital stay my parents remarking on how well I was dealing with the diagnosis. The only thing I knew for sure was that life kept going. Time didn’t stop just because I had cancer. In those initial days, all I could think was to just keep going. In fact, during those early days, I didn’t want to know the numbers and overall prognosis. I knew enough to know that stage iv cancer wasn’t good, but I didn’t want to know more than that. It took months before I was ready for that information. I learned several years ago that sometimes you just have to take things ten minutes at a time. You get through ten minutes, and then the next ten minutes and before you know it, an hour has passed. And then another an hour, and then a day and before you know it more time has passed than you thought possible.

There’s a quote I’ve always loved that I put into practice once I was diagnosed with cancer.

“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Reinhold Niebuhr

While I didn’t specifically think of that quote after I was diagnosed, I did think of my situation in terms of what I could change and what I could not. No matter what trial we are facing, we can divide it into two categories – what we can change and what we cannot. I couldn’t change that I had stage iv colon cancer. I couldn’t change that I didn’t find out I had Lynch Syndrome until I’d been diagnosed with late stage cancer. I couldn’t change that I had Lynch Syndrome. My mantra, if you like, became “it is what it is.” I couldn’t change what had already happened, but I realized I could change how I dealt with it. I could choose to be consumed by it, or I could learn to live with it. How we deal with our trials is up to us. We can choose to find help. We can choose our attitude. I promise you a positive attitude will make it easier for you and those around you. It’s not the be all answer, but it can’t hurt.

I had to learn the difference between what I could change and what I couldn’t change. I couldn’t afford to put my energy into what I couldn’t change; even before surgery and chemo, I didn’t have energy to spare. Banging my head against an immovable object wasn’t going to get me anywhere. Instead, I gave up the immovable object to God. I couldn’t do anything with it, but God could. Giving up our problems to God isn’t that easy though. It takes effort and a daily commitment. It’s not something we say we’re going to do one day, and then never make that decision again. It’s a daily decision we have to make.

Stay tuned for Part 2 tomorrow

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.