Sally Ortgies - 20+ Year Survivor!
By Sally Ortgies
I have a necklace with charms on it that I wear every day. Stamped on each charm is an important date…my wedding anniversary…the day of my daughter’s birth. Recently, I added a new charm to my necklace – 12/12/92 – the day I found out that I had colon cancer. You see, after being cancer-free for 21 years, I don’t look at this day as a bad day, but as an important day.
I spent the entire year of 1992 sick. I had abdominal pain, trouble eating, and suffered from an indescribable fatigue. I became so sick and tired of constantly saying I was sick and tired. I went to several doctors who all diagnosed my troubles as an ulcer. In December, I made an appointment with a new doctor, Dr. Jeffery Brady. I will never forget Dr. Brady’s words to me…”We will figure this out”. Sometimes that’s all a patient needs to hear from a doctor to find comfort.
A week later, on a Sunday morning, I began throwing up blood. My husband, Tony, rushed me to the Mercy West Urgent Care Clinic and I can remember hardly being able to hoist myself up onto the exam table. For the first time during that year of being sick, my blood was drawn. My hemoglobin count was so low that I should not have been able to walk in to the walk-in clinic. Tony was told to take me directly to the hospital.
I spent a good part of the following week undergoing tests starting from the top with an endoscopy and ending up at the bottom with a colonoscopy. The problem was at the bottom. The colonoscopy scope came to a quick halt upon encountering a lemon-sized tumor on the right side of my colon. I was a 26 year old with colon cancer.
Suddenly a family history started to unfold. Something no doctor had asked about and something our family had never talked about. My grandpa, his mom, my grandpa’s sister, and her daughter all had colon cancer.
I had surgery later that week with about two feet of my colon being removed. Weighing in at a whopping 90 pounds, I was able to come home from the hospital just in time for Christmas and then started a year of chemo in January of 1993. Back in those days chemo consisted of a weekly injection of 5-FU and a pill that I was thrilled to find out was sheep wormer. We always joked about how I could probably have bought it from a veterinarian for a fraction of the price. The chemo made me horribly sick, and the anti-nausea medication didn’t work. I would go in for my treatments after work on Fridays so I had the weekend to “recover” before the next work week. Tony and I loved eating out (still do) so on Friday nights we would go to our favorite restaurants only to have the chemo kick in on our way home.
After that year, I felt physically cured, but cancer never really goes away. And for our family, there have been many reminders. In 1998, my little brother, John, was diagnosed with colon cancer at age 27. Like me, he survived. Every year, the tests and doctor’s checkups would roll around for us both…unwelcome reminders that cancer can come back.
In February of 2002, at the suggestion of my oncologist, I started looking into genetic testing for Lynch Syndrome. As we do with these types of things, I put it off until January of 2008. The test showed that I was positive for Lynch Syndrome with the MLH1 mutation. This was not surprising at all based on our family history and the fact that my brother and I had colon cancer at such young ages. I think we surprised our genetic counselor by how calmly we took the news.
In 2009, another reminder struck when my mom, Judy, was diagnosed with colon cancer. Thankfully, my sister, Kim, does not have Lynch Syndrome, but she has faced her own cancer fight with thyroid cancer. I oftentimes think how hard it must be for my parents to see each one of their three children dealing with serious health issues.
In 2011, I was soon to get a first-hand experience of this with my own daughter. With Clara’s blessing, we decided to have genetic testing done. Clara was 14 at the time, and I’ve always thought that she was wise and mature beyond her years. She did not prove me wrong in this situation. With Lynch Syndrome each child has a 50% chance of inheriting the genetic mutation. No matter how hard I prayed that Clara would NOT have the mutation, I knew that the answer had been within her from the time she was conceived and no amount of praying would change that. God did, however, give us the strength and courage to deal with the two words we saw on the lab results – deleterious mutation. She is a “Lynchie” like me.
Later that same year, I finally made the decision to have a hysterectomy to deal with other risks that go along with Lynch Syndrome, ovarian and endometrial cancer. We also found out that my mom had breast cancer. The strange thing is that over all these years, with all these reminders, I had never met another person with Lynch Syndrome outside my own family. Just in the last few years, I’ve met several fellow Lynchies and my heart has broken for each one of them. A mom who deals with complications of colon cancer and has two teenagers who are both Lynch positive like her, a mom struggling with the death of her 20 year old son after two battles with colon cancer in under a year, a mom diagnosed at the age of 38 with Stage 4 colon cancer with three precious little ones under her care yet to be tested…can you see a theme here?
In simple terms, one of our genes (a mismatch repair gene) responsible for fixing mistakes that happen when our DNA replicates doesn’t work. So mistakes don’t get fixed and cancer can result. Individuals with Lynch Syndrome have a much greater risk of developing some type of cancer than the average population. More specifically, we have up to an 85% chance of getting colon cancer and up to a 65% risk of endometrial cancer. Other cancers we have to watch out for include ovarian, stomach, esophageal, ureter, breast, and skin just to name a few. Fortunately, with more research and preventative testing like annual colonoscopies, these numbers are starting to change for the better. Lynch syndrome is not necessarily a rare condition but is an extremely underdiagnosed condition. It is estimated that only 5% of those in the United States affected by Lynch are currently diagnosed. Knowing we have Lynch allows my family to be proactive with our health, and we have the awesome ability to do everything we can to prevent cancer.
Amazingly, things can still get in the way of life just when you’re feeling like it’s all under control. Our most recent reminder of this occurred just this summer when my dear dad, Lanny, was number 4 in my family of 5 to hear the words, “You’ve got colon cancer”. Fortunately, all signs point to a full recovery for my dad. His tumor was found during a colonoscopy, demonstrating the importance of screening and early detection with this all too common disease – colon cancer is the #2 cause of cancer deaths in Iowa and the nation.
So my “cancer story” comes to an end…for the time being. I’m hopeful that any new chapters will contain more good than bad. You see, I have a true and strong belief that good ALWAYS comes out of bad. My favorite Bible verse tells me so. “…we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us…” Romans 5:3-5
I had a good friend once tell me that cancer made me the person that I am today. He said that I wouldn’t be who I was if I had not had cancer. It may sound odd, but if that’s the case, then I think I’m glad I had it. And, that’s exactly why I added that important date to my necklace.
I have a necklace with charms on it that I wear every day. Stamped on each charm is an important date…my wedding anniversary…the day of my daughter’s birth. Recently, I added a new charm to my necklace – 12/12/92 – the day I found out that I had colon cancer. You see, after being cancer-free for 21 years, I don’t look at this day as a bad day, but as an important day.
I spent the entire year of 1992 sick. I had abdominal pain, trouble eating, and suffered from an indescribable fatigue. I became so sick and tired of constantly saying I was sick and tired. I went to several doctors who all diagnosed my troubles as an ulcer. In December, I made an appointment with a new doctor, Dr. Jeffery Brady. I will never forget Dr. Brady’s words to me…”We will figure this out”. Sometimes that’s all a patient needs to hear from a doctor to find comfort.
A week later, on a Sunday morning, I began throwing up blood. My husband, Tony, rushed me to the Mercy West Urgent Care Clinic and I can remember hardly being able to hoist myself up onto the exam table. For the first time during that year of being sick, my blood was drawn. My hemoglobin count was so low that I should not have been able to walk in to the walk-in clinic. Tony was told to take me directly to the hospital.
I spent a good part of the following week undergoing tests starting from the top with an endoscopy and ending up at the bottom with a colonoscopy. The problem was at the bottom. The colonoscopy scope came to a quick halt upon encountering a lemon-sized tumor on the right side of my colon. I was a 26 year old with colon cancer.
Suddenly a family history started to unfold. Something no doctor had asked about and something our family had never talked about. My grandpa, his mom, my grandpa’s sister, and her daughter all had colon cancer.
I had surgery later that week with about two feet of my colon being removed. Weighing in at a whopping 90 pounds, I was able to come home from the hospital just in time for Christmas and then started a year of chemo in January of 1993. Back in those days chemo consisted of a weekly injection of 5-FU and a pill that I was thrilled to find out was sheep wormer. We always joked about how I could probably have bought it from a veterinarian for a fraction of the price. The chemo made me horribly sick, and the anti-nausea medication didn’t work. I would go in for my treatments after work on Fridays so I had the weekend to “recover” before the next work week. Tony and I loved eating out (still do) so on Friday nights we would go to our favorite restaurants only to have the chemo kick in on our way home.
After that year, I felt physically cured, but cancer never really goes away. And for our family, there have been many reminders. In 1998, my little brother, John, was diagnosed with colon cancer at age 27. Like me, he survived. Every year, the tests and doctor’s checkups would roll around for us both…unwelcome reminders that cancer can come back.
In February of 2002, at the suggestion of my oncologist, I started looking into genetic testing for Lynch Syndrome. As we do with these types of things, I put it off until January of 2008. The test showed that I was positive for Lynch Syndrome with the MLH1 mutation. This was not surprising at all based on our family history and the fact that my brother and I had colon cancer at such young ages. I think we surprised our genetic counselor by how calmly we took the news.
In 2009, another reminder struck when my mom, Judy, was diagnosed with colon cancer. Thankfully, my sister, Kim, does not have Lynch Syndrome, but she has faced her own cancer fight with thyroid cancer. I oftentimes think how hard it must be for my parents to see each one of their three children dealing with serious health issues.
In 2011, I was soon to get a first-hand experience of this with my own daughter. With Clara’s blessing, we decided to have genetic testing done. Clara was 14 at the time, and I’ve always thought that she was wise and mature beyond her years. She did not prove me wrong in this situation. With Lynch Syndrome each child has a 50% chance of inheriting the genetic mutation. No matter how hard I prayed that Clara would NOT have the mutation, I knew that the answer had been within her from the time she was conceived and no amount of praying would change that. God did, however, give us the strength and courage to deal with the two words we saw on the lab results – deleterious mutation. She is a “Lynchie” like me.
Later that same year, I finally made the decision to have a hysterectomy to deal with other risks that go along with Lynch Syndrome, ovarian and endometrial cancer. We also found out that my mom had breast cancer. The strange thing is that over all these years, with all these reminders, I had never met another person with Lynch Syndrome outside my own family. Just in the last few years, I’ve met several fellow Lynchies and my heart has broken for each one of them. A mom who deals with complications of colon cancer and has two teenagers who are both Lynch positive like her, a mom struggling with the death of her 20 year old son after two battles with colon cancer in under a year, a mom diagnosed at the age of 38 with Stage 4 colon cancer with three precious little ones under her care yet to be tested…can you see a theme here?
In simple terms, one of our genes (a mismatch repair gene) responsible for fixing mistakes that happen when our DNA replicates doesn’t work. So mistakes don’t get fixed and cancer can result. Individuals with Lynch Syndrome have a much greater risk of developing some type of cancer than the average population. More specifically, we have up to an 85% chance of getting colon cancer and up to a 65% risk of endometrial cancer. Other cancers we have to watch out for include ovarian, stomach, esophageal, ureter, breast, and skin just to name a few. Fortunately, with more research and preventative testing like annual colonoscopies, these numbers are starting to change for the better. Lynch syndrome is not necessarily a rare condition but is an extremely underdiagnosed condition. It is estimated that only 5% of those in the United States affected by Lynch are currently diagnosed. Knowing we have Lynch allows my family to be proactive with our health, and we have the awesome ability to do everything we can to prevent cancer.
Amazingly, things can still get in the way of life just when you’re feeling like it’s all under control. Our most recent reminder of this occurred just this summer when my dear dad, Lanny, was number 4 in my family of 5 to hear the words, “You’ve got colon cancer”. Fortunately, all signs point to a full recovery for my dad. His tumor was found during a colonoscopy, demonstrating the importance of screening and early detection with this all too common disease – colon cancer is the #2 cause of cancer deaths in Iowa and the nation.
So my “cancer story” comes to an end…for the time being. I’m hopeful that any new chapters will contain more good than bad. You see, I have a true and strong belief that good ALWAYS comes out of bad. My favorite Bible verse tells me so. “…we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us…” Romans 5:3-5
I had a good friend once tell me that cancer made me the person that I am today. He said that I wouldn’t be who I was if I had not had cancer. It may sound odd, but if that’s the case, then I think I’m glad I had it. And, that’s exactly why I added that important date to my necklace.
