We are heartbroken at the passing of our dear friend, Heidi. We are committed to honoring her memory.
Heidi White - 1975-2019
By Heidi White
I grew up in the Des Moines Iowa area, with my twin sister, Heather. I started ice skating as a teenager with my sister, and ended up getting a job as a "Rink Ranger" (think lifeguard on ice).
The guy who would eventually become my husband was also a Rink Ranger. We were married in January of 2000, on the same sheet of ice where we met, skates and all! We now have 3 kids, ages 12, 8, and 3.
The year after we got married, my mom had her first occurrence of colon cancer at age 46. A few years later, her second. After her sister ended up with stage 3 endometrial cancer, my Mom was advised by her Gynecologist, Dr. Hancock, to have genetic testing done. Since she was the first in her family to do this, there was a considerable expense associated with the testing. She decided though, for the sake of her family, to go ahead with it. She was diagnosed with Lynch Syndrome in July of 2010. After that my aunt was also tested and diagnosed with the same MLH1 mismatch repair gene that my mom had been.
That October, my sister and my husband ran the Des Moines Marathon, and I ran the Half Marathon. It was a first for all three of us. My sister and I had both been advised to be tested for Lynch, or at the very least, start getting a colonoscopy ten years prior to mom’s first occurrence. I felt like after training for, and running the half, I could certainly survive my first colonoscopy. Everyone I had ever talked to was right! It wasn’t that bad. The prep was the worst part. After that you get the good meds, and its a breeze. I had a couple polyps, but it all looked good, pathology came back clear. I was told to come back in 3-5 years.
My sister wasn’t quite on the same page with screening. She was of the mind that this genetic syndrome was some sort of ploy to get people to have expensive tests run, and fatten the wallets of the medical industry. Nothing that my mom or I could say would change her mind.
In May 2011, I found out we were expecting our third child. My husband was in between jobs, so we were thankfully able to use title 19 to cover our medical expenses. We welcomed the first little boy to our family in January 2012. I knew that the title 19 would end for me after six months, so at my six week checkup, I had my OB, Dr. Turner, go ahead and order the labs for my genetic testing. I got called to come in to the office two days before my insurance expired. I was Lynch positive. She advised me to have a preventive hysterectomy done, and I joked, “Does tomorrow work for you?” No such luck.
In the meantime, I was enjoying every moment of my third and last baby. Something about knowing he’d be the last, it makes you appreciate the little things that fly by so quickly! I was tired all the time, and really struggled to bounce back after the c-section. Of course, I chalked it up to having a newborn, and major surgery. That summer, we went on a family trip out to Yellowstone where we did some hiking. I got so tired, so quickly it was crazy. Again, I assumed I was just out of shape.
I started to feel like something wasn’t right. I looked up Lynch Syndrome International, and was connected with a wonderful person, and friend here locally. She immediately took me under her wing. I was able to share my concerns and fears with her, and she actually took me seriously. (Some of my family thought I was crazy, and paranoid about illness) By fall of 2012 I was noticing some changes in my digestion. I felt very bloated much of the time, and started taking stool softeners and laxatives because I thought I was constipated. There were two days where I had blood in my stool. But then it stopped. I was hesitant to go to the doctor because we still didn’t have insurance. I looked into different programs for assistance, but our income was too high to qualify for anything, so I continued to put it off.
January 22, 2013, I had some popcorn in the evening, and KNEW something was wrong, because I could only eat a little bit of it before becoming very full. (I love my popcorn! :)) I took some laxatives that night, and expected that the next morning I would have some relief. I awoke with pain in my lower right abdomen. It was bearable though, so I just went on with my day. Got the girls off to school, and was caring for my little guy, now almost 1. By noon, the pain had increased, and I asked my Mom if she could meet my son and I at the emergency room. There was quite a flu epidemic going on at the time, so there was a hospital rule that no children were allowed into the ER unless they were patients. So mom began to walk the halls with my son in the stroller.
They got me checked in, and once in the ER room, I felt like I had to go to the restroom. I went on my own, but the pain all of the sudden got so bad, that I started crying, and was doubled over while walking back to my room. I got some pain meds, and started prep for a CT, with a barium enema. Thank goodness for those meds, because I don’t know if I could have gotten through that without them.
Fast forward to result time, they had found a bowel perforation (hole). There was no way of knowing exactly what had caused it at that point. But it was important to start antibiotics right away. They took me by ambulance to Mercy Main, in downtown Des Moines. There I met my colorectal surgeon, Dr. Kraemer. He had been my mom’s surgeon a while back, and I had heard nothing but wonderful things about him. (rightly so) He told me that we needed to figure out what was going on, and it wasn’t safe to do a colonoscopy because of the perforation. Before surgery could be done my hemoglobin needed to go up from 6, to 11 (normally 12-15).
While waiting for antibiotics to do their job, and my blood to get stronger, I got settled in on 8 North. My aunt donated not one, but TWO disco balls to put in the room, for our frequent dance parties with the kids. I mastered the art of IV pole dancing. We even got some doctors and nurses in on the action. My sister brought a Slinky toy and we spent hours in the stairwells trying to get the slinky to go down a whole flight. My family and I are the kind of people who try to find the fun anywhere, and this was no different.
Surgery was on January 30. Dr. Kraemer had been very honest with me, that it could be cancer, especially given my Lynch diagnosis, and family history. He informed me of several ways it could go, from a small resection, to a total colectomy. The surgery took 8 hours. That night, I remember waking up, and seeing my family with tears in their eyes. It was cancer. One word, and a thousand implications.
Dr. Kraemer did a subtotal colectomy, and resection, so that I would still be able to pass stool through what was left of my colon. Then the waiting for pathology results began. In the meantime, John would bring the kids down to visit. My son learned to walk at the hospital. My girls hung out and we did each others nails. There was an absolute outpouring of support from our community, especially the Norwalk schools and community. My daughter’s Kindergarden teacher arranged a sign up for families to bring meals to John and the kids. Both of our families stepped up and helped with the kids when John was working.
Pathology came back, and we found out it was Stage IV. I was shocked, because I thought that to be stage IV you had to have disease in other major organs. But I learned that if you have so many lymph nodes that tesl positive, as well as tumors outside the colon wall, in the peritonaeum, that is also classified as late stage cancer. That’s when it hit. I can honestly say that I went through all the stages of grief, just with my diagnosis.
I then met Dr. Welker. She was my oncologist. She was very positive, and up front with me. We were going to be aggressive with this cancer. I asked about my prognosis. She said that she’s seen "many patients with similar cases to mine who have lived past the 5 and even 10 year mark. So we will keep a positive thought. But are we going to cure this cancer? Probably not.”
I was reeling. Five to ten years if I’m lucky?! I thought of my little boy who had just turned 1, and the overwhelming thought was, “THAT IS NOT ENOUGH TIME!”
So many people were able to encourage me. My best friend and sister, Heather. My parents, Ken and Diane, and extended family. My Aunt Marsha, and cousin Briana. My husbands family. My Lynchie friend, Sally. My new friends, the nurses on 8 North. And many more I don’t have time to mention. With all that support, you should know that I am a firm believer in mental health care. My Psychiatrist, Dr. Jennisch came to the hospital to see me, and with his help, my therapist’s help, and medication, I was able to get through each day. Most days I would hold it together around my family, and kids. But after bedtime at 8, that was my time to break down if I needed to. I feel like we live in a culture that emphasizes positivity and happiness. There are so many cliches about the power of positive thinking when it comes to cancer and illness. I think there is a time and place for it. But there is also a time to be sad, scared, and plain pissed off about your illness. Being realistic is not the same as being negative. (Stepping off the soapbox now)
I was prescribed the standard 6 months of chemo. Friends, family, and the community continued their support. My girls, then 10 and 6, made a special sign I could put on my bedroom door during infusion time to let them know that Mom needed some extra rest. We made our “chemoloon” arch over the window. Twelve balloons for twelve rounds. At the end of each round, when I was feeling more human, we would make a big deal about popping a balloon, and having a living room dance party. When treatment was all done, we had a party with friends and family.
I've always heard the old adage “Every cloud has a silver lining”. Surprisingly enough, even my cancer cloud has some silver lines. Because of my diagnosis, I’ve met hundreds of fellow colon cancer fighters. I’ve been connected with some amazing support groups. I’ve made difficult choices about my life, but have walked away feeling that they were the right choices. Life is too short to be anything but authentic.
I have to say though, that the biggest gift that’s come from my diagnosis, has been the wake up call for my family to get tested for Lynch. My sister was tested and started getting screened regularly. Eight other family members were tested, and started screening. We still have a little ways to go, but it’s sure a great start.
Two weeks after my last treatment, my team and I did our first Get Your Rear in Gear. The 2015 event will be the third time for “Team Semicolon", and it marks two years post treatment for me, with no evidence of disease. (aka NED) Having met so many fellow colon cancer fighters, this year my team is dedicating our efforts to my young friends who have learned that colon cancer doesn’t care how old you are. Many of them are spending time and energy on creating awareness for the under 40 crowd, and advocating for earlier screening.
In closing, to anyone reading this, know your family history. Get screened. A colonoscopy isn’t my idea of a good time, but it’s so much easier than cancer treatment, and as my sister says, “They give you the good forgetting medicine”. Poop talk isn’t glamorous or popular. But if something is up, and you notice changes in your tummy or the toilet, talk to your doctor! Right now we are trying to teach my son that “potty talk” isn’t always ok, because he thinks its hilarious, as do most 3 year olds. In this case though, if you’re having symptoms, bring on the potty talk… Its totally appropriate.
I grew up in the Des Moines Iowa area, with my twin sister, Heather. I started ice skating as a teenager with my sister, and ended up getting a job as a "Rink Ranger" (think lifeguard on ice).
The guy who would eventually become my husband was also a Rink Ranger. We were married in January of 2000, on the same sheet of ice where we met, skates and all! We now have 3 kids, ages 12, 8, and 3.
The year after we got married, my mom had her first occurrence of colon cancer at age 46. A few years later, her second. After her sister ended up with stage 3 endometrial cancer, my Mom was advised by her Gynecologist, Dr. Hancock, to have genetic testing done. Since she was the first in her family to do this, there was a considerable expense associated with the testing. She decided though, for the sake of her family, to go ahead with it. She was diagnosed with Lynch Syndrome in July of 2010. After that my aunt was also tested and diagnosed with the same MLH1 mismatch repair gene that my mom had been.
That October, my sister and my husband ran the Des Moines Marathon, and I ran the Half Marathon. It was a first for all three of us. My sister and I had both been advised to be tested for Lynch, or at the very least, start getting a colonoscopy ten years prior to mom’s first occurrence. I felt like after training for, and running the half, I could certainly survive my first colonoscopy. Everyone I had ever talked to was right! It wasn’t that bad. The prep was the worst part. After that you get the good meds, and its a breeze. I had a couple polyps, but it all looked good, pathology came back clear. I was told to come back in 3-5 years.
My sister wasn’t quite on the same page with screening. She was of the mind that this genetic syndrome was some sort of ploy to get people to have expensive tests run, and fatten the wallets of the medical industry. Nothing that my mom or I could say would change her mind.
In May 2011, I found out we were expecting our third child. My husband was in between jobs, so we were thankfully able to use title 19 to cover our medical expenses. We welcomed the first little boy to our family in January 2012. I knew that the title 19 would end for me after six months, so at my six week checkup, I had my OB, Dr. Turner, go ahead and order the labs for my genetic testing. I got called to come in to the office two days before my insurance expired. I was Lynch positive. She advised me to have a preventive hysterectomy done, and I joked, “Does tomorrow work for you?” No such luck.
In the meantime, I was enjoying every moment of my third and last baby. Something about knowing he’d be the last, it makes you appreciate the little things that fly by so quickly! I was tired all the time, and really struggled to bounce back after the c-section. Of course, I chalked it up to having a newborn, and major surgery. That summer, we went on a family trip out to Yellowstone where we did some hiking. I got so tired, so quickly it was crazy. Again, I assumed I was just out of shape.
I started to feel like something wasn’t right. I looked up Lynch Syndrome International, and was connected with a wonderful person, and friend here locally. She immediately took me under her wing. I was able to share my concerns and fears with her, and she actually took me seriously. (Some of my family thought I was crazy, and paranoid about illness) By fall of 2012 I was noticing some changes in my digestion. I felt very bloated much of the time, and started taking stool softeners and laxatives because I thought I was constipated. There were two days where I had blood in my stool. But then it stopped. I was hesitant to go to the doctor because we still didn’t have insurance. I looked into different programs for assistance, but our income was too high to qualify for anything, so I continued to put it off.
January 22, 2013, I had some popcorn in the evening, and KNEW something was wrong, because I could only eat a little bit of it before becoming very full. (I love my popcorn! :)) I took some laxatives that night, and expected that the next morning I would have some relief. I awoke with pain in my lower right abdomen. It was bearable though, so I just went on with my day. Got the girls off to school, and was caring for my little guy, now almost 1. By noon, the pain had increased, and I asked my Mom if she could meet my son and I at the emergency room. There was quite a flu epidemic going on at the time, so there was a hospital rule that no children were allowed into the ER unless they were patients. So mom began to walk the halls with my son in the stroller.
They got me checked in, and once in the ER room, I felt like I had to go to the restroom. I went on my own, but the pain all of the sudden got so bad, that I started crying, and was doubled over while walking back to my room. I got some pain meds, and started prep for a CT, with a barium enema. Thank goodness for those meds, because I don’t know if I could have gotten through that without them.
Fast forward to result time, they had found a bowel perforation (hole). There was no way of knowing exactly what had caused it at that point. But it was important to start antibiotics right away. They took me by ambulance to Mercy Main, in downtown Des Moines. There I met my colorectal surgeon, Dr. Kraemer. He had been my mom’s surgeon a while back, and I had heard nothing but wonderful things about him. (rightly so) He told me that we needed to figure out what was going on, and it wasn’t safe to do a colonoscopy because of the perforation. Before surgery could be done my hemoglobin needed to go up from 6, to 11 (normally 12-15).
While waiting for antibiotics to do their job, and my blood to get stronger, I got settled in on 8 North. My aunt donated not one, but TWO disco balls to put in the room, for our frequent dance parties with the kids. I mastered the art of IV pole dancing. We even got some doctors and nurses in on the action. My sister brought a Slinky toy and we spent hours in the stairwells trying to get the slinky to go down a whole flight. My family and I are the kind of people who try to find the fun anywhere, and this was no different.
Surgery was on January 30. Dr. Kraemer had been very honest with me, that it could be cancer, especially given my Lynch diagnosis, and family history. He informed me of several ways it could go, from a small resection, to a total colectomy. The surgery took 8 hours. That night, I remember waking up, and seeing my family with tears in their eyes. It was cancer. One word, and a thousand implications.
Dr. Kraemer did a subtotal colectomy, and resection, so that I would still be able to pass stool through what was left of my colon. Then the waiting for pathology results began. In the meantime, John would bring the kids down to visit. My son learned to walk at the hospital. My girls hung out and we did each others nails. There was an absolute outpouring of support from our community, especially the Norwalk schools and community. My daughter’s Kindergarden teacher arranged a sign up for families to bring meals to John and the kids. Both of our families stepped up and helped with the kids when John was working.
Pathology came back, and we found out it was Stage IV. I was shocked, because I thought that to be stage IV you had to have disease in other major organs. But I learned that if you have so many lymph nodes that tesl positive, as well as tumors outside the colon wall, in the peritonaeum, that is also classified as late stage cancer. That’s when it hit. I can honestly say that I went through all the stages of grief, just with my diagnosis.
I then met Dr. Welker. She was my oncologist. She was very positive, and up front with me. We were going to be aggressive with this cancer. I asked about my prognosis. She said that she’s seen "many patients with similar cases to mine who have lived past the 5 and even 10 year mark. So we will keep a positive thought. But are we going to cure this cancer? Probably not.”
I was reeling. Five to ten years if I’m lucky?! I thought of my little boy who had just turned 1, and the overwhelming thought was, “THAT IS NOT ENOUGH TIME!”
So many people were able to encourage me. My best friend and sister, Heather. My parents, Ken and Diane, and extended family. My Aunt Marsha, and cousin Briana. My husbands family. My Lynchie friend, Sally. My new friends, the nurses on 8 North. And many more I don’t have time to mention. With all that support, you should know that I am a firm believer in mental health care. My Psychiatrist, Dr. Jennisch came to the hospital to see me, and with his help, my therapist’s help, and medication, I was able to get through each day. Most days I would hold it together around my family, and kids. But after bedtime at 8, that was my time to break down if I needed to. I feel like we live in a culture that emphasizes positivity and happiness. There are so many cliches about the power of positive thinking when it comes to cancer and illness. I think there is a time and place for it. But there is also a time to be sad, scared, and plain pissed off about your illness. Being realistic is not the same as being negative. (Stepping off the soapbox now)
I was prescribed the standard 6 months of chemo. Friends, family, and the community continued their support. My girls, then 10 and 6, made a special sign I could put on my bedroom door during infusion time to let them know that Mom needed some extra rest. We made our “chemoloon” arch over the window. Twelve balloons for twelve rounds. At the end of each round, when I was feeling more human, we would make a big deal about popping a balloon, and having a living room dance party. When treatment was all done, we had a party with friends and family.
I've always heard the old adage “Every cloud has a silver lining”. Surprisingly enough, even my cancer cloud has some silver lines. Because of my diagnosis, I’ve met hundreds of fellow colon cancer fighters. I’ve been connected with some amazing support groups. I’ve made difficult choices about my life, but have walked away feeling that they were the right choices. Life is too short to be anything but authentic.
I have to say though, that the biggest gift that’s come from my diagnosis, has been the wake up call for my family to get tested for Lynch. My sister was tested and started getting screened regularly. Eight other family members were tested, and started screening. We still have a little ways to go, but it’s sure a great start.
Two weeks after my last treatment, my team and I did our first Get Your Rear in Gear. The 2015 event will be the third time for “Team Semicolon", and it marks two years post treatment for me, with no evidence of disease. (aka NED) Having met so many fellow colon cancer fighters, this year my team is dedicating our efforts to my young friends who have learned that colon cancer doesn’t care how old you are. Many of them are spending time and energy on creating awareness for the under 40 crowd, and advocating for earlier screening.
In closing, to anyone reading this, know your family history. Get screened. A colonoscopy isn’t my idea of a good time, but it’s so much easier than cancer treatment, and as my sister says, “They give you the good forgetting medicine”. Poop talk isn’t glamorous or popular. But if something is up, and you notice changes in your tummy or the toilet, talk to your doctor! Right now we are trying to teach my son that “potty talk” isn’t always ok, because he thinks its hilarious, as do most 3 year olds. In this case though, if you’re having symptoms, bring on the potty talk… Its totally appropriate.