October 2007

Sonja & Jeff’s Colondar Bio

October 2007 – Take Care of Yourself

Sonja Lee | Milwaukee, WI | Diagnosed at 26 | Survivor since 2000
Dr. Jeff Carenza | St. Louis, MO | Diagnosed at 29 | Survivor since 2005

Sonja Lee and Dr. Jeff Carenza are both athletic and in tune with their bodies, so without a small twist of fate, neither would have been diagnosed with colorectal cancer so quickly.

If her mom hadn’t been going through chemotherapy for colon cancer, Sonja, a 2nd degree black belt in Taekwondo, might not have paid attention to the blood in her stool. Instead, she went to the doctor without even telling her family and was quickly given a colonoscopy. When her doctor discovered two polyps, one of which was cancerous, Sonja was diagnosed with stage I colon cancer.

After a bout with food poisoning, Jeff, an avid runner, found himself in the hospital. Routine lab work showed that he was severely anemic and needed further testing, including a colonoscopy. A resident in radiology, Jeff saw his own tumor while looking at his CT scan. He was diagnosed with stage III colon cancer and had surgery and chemotherapy. Jeff believes deeply that divine intervention played a part in his diagnosis and feels that this experience has improved his ability to help his patients.

Sonja and Jeff know the importance of exercise and have continued their active lifestyles since being diagnosed, but they know that sometimes it can take a bit of luck to keep things on track.

Jeff’s Story as told by Jeff:

I would say that my story begins on July 4, 2005.  I was on vacation in Miami and got food poisoning after eating Sushi that Sunday night, July 3rd.  Monday morning I awoke with diarrhea, nausea, and vomiting.  I was scheduled to leave Miami that day.  Despite attempts at oral rehydration with water and Gatorade and self-medication with oral anti-emetics the dehydration progressed.  Ultimately, I missed my return flight while receiving care in the emergency room at a local community hospital in Miami.

As a physician, I thought this would be a brief, uncomplicated visit – get intravenous fluids, symptom control, and get out.  I got in the examination room, and they drew basic labs and started IV fluids. The ER doctor taking care of me came into the room asking, “Did you know you’re anemic?”  I responded with “NO?!”  He responded, “Looks like iron deficiency… it’s probably nothing, but you should probably get that checked out when you get home.”

A few months before, I had made a comment to my girlfriend that the whites of my eyes (sclera) were really white. In retrospect I can look back at photographs taken during my sister’s wedding in May and recognize how pale I was in comparison to everyone else. My mom also recognized my pallor at that time but dismissed it with, “Well, he’s a radiologist, he works in a dark room all day.”  Also, I am a pretty avid runner and run five or six miles per day approximately 4-5 days per week.  During the previous months I just couldn’t do it.  I would get halfway through my usual run, and I was just exhausted.  I thought I was falling out of shape and dismissed it.  When people have iron deficiency anemia, they can develop a symptom called pica which manifests as unusual cravings for ice and raw, starchy vegetables.  Severe cases have been reported of people even eating dirt.  At the time, I had cravings for raw cucumbers and squash.  I loved getting salads and putting as much raw squash and cucumbers on it as I could.  When I look back, I think these were all signs that I should have recognized.  I never had any abdominal pain or change in bowel habits, and I only saw blood in my stool a few days before my colonoscopy.

When I got home I established care with a local doctor in St. Louis that following week.  I got all my labs faxed from Miami.  Even this well-respected internist originally suspected that I had some type of hereditary anemia, nothing severe.  He repeated the lab tests/blood counts to evaluate the severity of the anemia and check for progressive blood loss.  He commented, “We may put you in the hospital depending on how low your blood counts are… we need to figure out what’s going on sooner rather than later.”  My counts weren’t too severe, my hemoglobin was in the high 10s, but that’s still pretty low when you consider a hemoglobin of 14 is normal.  A digital rectal exam demonstrated occult blood loss, but even that was not so abnormal since I just had gastroenteritis and my colon was probably still recovering.  Since the anemia was iron deficient, we both thought upper and lower endoscopy was warranted.  My scope was scheduled for the following week.

My parents came up from Dallas, and I went in that morning expecting that it would be no big deal.  I had never met the gastroenterologist before.  He was a little late, and I was a little anxious.  I remember him dismissing my symptoms with, “This is going to be a waste of my time and a waste of your time.  You’re young and have no family history of cancer, so this will show nothing.”  Cancer wasn’t even an option he was considering.  “Why am I even doing this?” was the impression he left me with; he had already made his conclusions before he ever met me or performed the endoscopy.  That bothered me.  I recall slowly waking up from the sedation hearing him say, “I hate to be the bearer of bad news but there’s a mass in your transverse colon that I can’t get my scope around.  It’s probably been there some time.”  You need to get a CT scan and see a colorectal surgeon.

I contrast his manner with that of the anesthesiologist who kept asking if I was okay.  He could sense that this rocked my world.  He was very positive as he consistently repeated, “At least we know what’s going on… and now we can try to fix it.”  As a physician, I know that giving a patient bad news is no easy task, ever.  Still, no doctor, no matter how accomplished, should ever be dismissive of a patient or their symptoms.  Never tell a patient “They’re a waste of your time.”  I suppose I was expecting some sort of apology from the gastroenterologist.  I’m still waiting for that.

My family was all stoic; we were all quiet . I asked my mom what she was thinking, and she simply responded, “I’m praying.”  I come from a religious, God-fearing family.  In retrospect, it’s amazing to see how God was there through all of this, as He is with everything.  From the moment bad news was delivered, God demonstrated He was in control and delivered everything I needed and more.

My attending staff knew I was getting a colonoscopy. I called one of them, Cooky (Christine Menias, MD), right away to give her the results, “It looks like I have cancer.”  She was dead silent.  I said, “I want you to read my scan.  Also, I need a colorectal surgeon.  I know a few… who would you get?”  She said to get David Dietz.  My anesthesiologist, who had been overhearing our conversation, commented, “I saw Dr. Dietz earlier this morning.  I’ll go find him, throw a lasso around his neck, and drag him down here.”  Ten minutes later he arrived with Dr. Dietz.  From the minute Dietz arrived, he was tactful, yet positive.  He had a plan.  He suspected since I was so young, with no family history, that I could be the proband (new mutation) of HNPCC or Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer).  He said that he could remove the portion of my colon occupied by the cancer and leave the remainder of the colon, but any portion of my colon left behind would always be at risk for recurrence, especially at my young age of diagnosis.  His response was, “If it was me or anyone in my family, I would take the whole colon and attach (anastomose) the small intestine to the rectum.”  He said that I would still need a rigid proctoscopy annually to survey the rectum, which would be left in place.  Ultimately this would result in more frequent bowel movements of varying consistency, but my body would adapt with time. Dr. Dietz instructed us to come to his office after the CT scan and if everything appeared resectable we could further discuss details of the surgery.

When I completed my scan, I immediately jumped off the table to look at the images – being a radiology resident, I knew what I was looking for.  I was so scared I could hardly walk back to the reading room, but I had to know.  I remember looking down and just seeing my name on the images.  It just didn’t seem real.  I remember looking through the images, “The lungs are clear… the liver is clear.”  Then I looked at the transverse colon and thought, “That’s big… you don’t need a colonoscopy to see that.”  The tumor was nearly obstructing the colon.  The more worrisome finding was a 3.0 cm lymph node right next to it in the transverse mesocolon.  I remember feeling totally terrified when I recognized it had spread to the lymph nodes.  I wasn’t as up-to-date with the most current colorectal cancer staging, but I knew that lymph node involvement wasn’t good.

It was probably 30 minutes later when it was time to go see Dr. Dietz. We walked down to Dr. Dietz’s office, and I gave him my preliminary interpretations of the scan.  Cooky had already spoken to him as well.  The whole time he was positive.  He responded, “Maybe the lymph node is reactive because of the associated inflammation… maybe it’s not involved with cancer.”  Well, the surgery proved it was, but still he was positive.

He said that he typically operated on Tuesdays and Thursdays, and he was about six weeks out for operating room appointments.  Regardless, he called the OR and made a slot for me the next Monday, just two days away.  Come to find out, he told some of my attendings that he would have operated on Saturday, the very next day, if he could find an OR team to come in for a non-emergency operation on a Saturday.  He will always be a personal hero of mine.

My sister and her husband came in town, and she had already found the Colondar on The Colon Club website once she heard the news.  She told me that there was a whole calendar of survivors and some of them even had stage IV disease.  I read their stories, and we looked at The Colon Club website that weekend.

The weekend progressed and soon it was 9:30 Monday morning.  We were getting ready to leave for the hospital to arrive at the appointed time of 10 am.  Dr. Dietz called me at home and said, “Hey, we’re looking for you… we’re ready to go… we’re going to expedite you through pre-op so we can get started.”  The next hour rushed by until I found myself in the OR counting backwards with the anesthesia. Throughout the surgery, Dr. Dietz had nurses in the OR call down to my parents to give them an update.  Once to say, “It looks like its all right here… it appears contained.”  The second time (a few hours later) to say, “We’re closing the abdomen now… it won’t be much longer.”  He did an extensive nodal dissection.  I couldn’t have asked for or received a better surgeon.  I was in the hospital for 11 days with a post-operative ileus (when your bowel is partially paralyzed).  I can remember passing so much fluid out of my bottom.  It was frustrating because your body has to re-train itself.  I remember waking up every hour to go to the bathroom or waking up after having messed myself.  I was 29 years old and wearing Depends to bed.  Despite all this, Dr. Dietz reinforced that this would get better with time, and we could even use certain medications if needed.

Eventually we got the pathology back and it was okay… relatively good, all things considered.  Only the one lymph node was involved.  I had two additional polyps on the right side of my colon which they didn’t see until the surgery.  Dietz originally suspected I was going to have Lynch Syndrome (HNPCC), yet all of my genetic testing came back normal.  Ultimately I would need to have chemotherapy, but the numbers were in my favor.  He introduced me to my oncologist, Dr. Benjamin Tan.  Six weeks following surgery, I began chemotherapy.  Dr. Tan said, “Chemotherapy with FOLFOX (5-Fluorouracil, Leucovorin, and Oxaliplatin) would increase my disease free survival from 68-70% to nearly 80%.”  Naturally, my response was, “If that’s as good as it gets, let’s do it.”

I got a port-a-cath implanted and started getting chemo (12 treatments total).  The first few treatments weren’t so bad and I thought, “No problem, I’ll have this whipped.”  Following treatments 6-7 the peripheral neuropathy from the Oxaliplatin got worse as did the nausea and vomiting.  I tried to do chemo Wednesday, Thursday and Friday, and then have the weekends to recover and go back to work on Monday.  I started on a clinical trial, adding Erbitux to the FOLFOX regimen.  I was randomized to the placebo group, which was frustrating.  I wasn’t getting the benefit of the extra drug, and the study protocol was really strict.  My white blood cell counts wouldn’t be high enough to get treatment according to the study guidelines; therefore, many treatments got postponed.  I was afraid it was going to take a year to finish chemotherapy instead of six months.

We used Neulasta and Neupogen to try to get my white blood counts up.  They said that I would have a little bone pain but that was an understatement.  I had A LOT of bone pain.  After a few postponed treatments and progressive frustration, I discontinued the clinical trial.  We altered the chemotherapy regimen doses a little and the remaining treatments went as expected – not pleasant, but at least without delay.

My original CEA (tumor marker called carcinoembryonic antigen) was 78 which is high.  I’ve seen higher but that’s still pretty high.  After surgery, my CEA has been less than 1.0 (undetectable), which is indicative of complete resection of any disease.  There is still a chance of micro-metastases, but that’s the point of doing adjuvant chemotherapy.

I’m back to running; I’ve started working out and going to the gym again – come to find out that exercise also helps prevent secondary recurrence.  My palms and the soles of my feet are still numb from the Oxaliplatin, but they are getting better every day.  I eat whatever I want and require no extra medications or Depends for bowel control or lack thereof.

So what have I learned from this?  It has made me a better doctor; no question about that.  I can relate to cancer patients so much better now.  I understand the levels of anxiety and frustration blood tests and medical imaging generate.  Memories of my own experiences guide the manner in which I practice radiology every day.  Patients remember their encounters with each doctor no matter how brief the interaction.  Ultimately, I want patients to have as positive of an experience as possible.

This experience has strengthened my faith.  In fact, it has never been stronger. I have had to continually put my trust in a power greater than myself as I’m constantly reminded that I’m not in control.  I feel my life today is a testament to answered prayers and God’s Grace and mercy.  In a weird, sick way, I thank God for giving me this experience for through this trial my personality, character, and faith have been polished and refined.  I’m stronger now than I have ever been.

Cancer has made me realize just how precious every day is.  Nothing has really changed.  We’re all mortal, and we’re all going to die.  The one certainty of this life is that it is FINITE.  The next life is the one that is eternal.  None of us can change the past.  We can only learn from past mistakes and try to move forward.  Furthermore, we have no guarantee of the next minute let alone the next 5-10 years.  So the only thing that really matters is right now, this very moment.  So the real question is, “What are we doing with our lives right now and in whom or what are we putting our trust and faith?  Whom can we faithfully rely upon to deliver us from this fallen world?”  For me, that remains God above and his Son, Jesus.

I thank God for food poisoning for it probably extended my life. Who knows how extensive the spread would have been if I was diagnosed any later.  In so many ways now my life is centered upon trying to pay things forward as much as I can.  I guess you could say that my ministry or focus appears to have just begun.  What I do from this point forward is a testament to my appreciation and thankfulness for still being here, however long God allows.

Sonja’s Story as told by Sonja:

My story is not that long. My mom was diagnosed with colon cancer in the spring of 2000, right before she turned 53. It had spread to her lymph nodes, and she needed surgery. They ended up removing three feet of her colon. That fall, while my mom was still going through chemo, I noticed blood in my stool. When I saw the bleeding, I knew it was a symptom. I knew that it could be cancer, but I didn’t really think it would be because I was so young. I had no idea that people my age could get colon cancer. I had just turned 26 in October.

It took me a little while to work up the nerve to make an appointment with a doctor (I also waited for the insurance from my new job to kick in).  When I finally got to the doctor, I was ten minutes late for my appointment, so they wouldn’t let me see him. They told me to go to the urgent care center, and the doctor there said it was probably nothing. He told me to do an FOBT (fecal occult blood test); so I did that and took it in to my doctor. Nothing showed up. I said, “Look, I’ve seen the blood. I don’t need a card to tell me that it’s there.” He knew my family history, and even though he didn’t say anything about cancer, I knew he was concerned because he recommended a colonoscopy. I wasn’t afraid of what they would find (I was sure it was nothing); I was just a little leery of the colonoscopy itself.

In December, when I went in for the colonoscopy, they found two polyps. Afterward, the doctor said, “Don’t worry. I’m sure it’s nothing. I’ll just send you a letter when we get the biopsy back saying it’s fine. If we do find something, I’ll call, but don’t worry.” A couple of weeks later, at about 10:00 on a Friday night, I came home to a message from him on my answering machine.

Because he had already told me that he was only going to call if it was cancer, I was pretty irritated. I didn’t want to have to wait until Monday morning to talk to him. I called the answering service hoping that somehow I would be able to get a hold of him. Although he wasn’t the doctor on duty, I persuaded the service to call him, and he was kind enough to call me back that night. He said that one of the polyps was cancer, but the biopsies from the area around it were okay. I had stage I colon cancer. Fortunately, all of it had already been removed, so I didn’t need chemo.  He told me how lucky I was that I had a symptom.

I waited until the next day to call my parents. For me, making that call was almost worse than the cancer itself. I hadn’t told anyone in my family about the colonoscopy, or even the blood in my stool, because my mom is a worrier. I didn’t want her to worry, and I knew that she would – especially because of what she had gone through. She’s not a very outwardly emotional person, so she might not talk about it, but she worries like crazy. I remember when I did tell her, she just kept saying over and over, “You’re too young, you’re too young.” Even though I was telling her it was removed and that it hadn’t spread, I think she was imagining that I would have to go through what she was going through. I was glad that I had waited because I could tell her that the cancer was removed and gone. If I had told her before, I think she would have flipped out.

I also had to call my siblings – my brother, who is five years older than me; my twin sisters, who are four years older than me; and my other sister, who is two years older than me. My brother and one of my sisters both live a few blocks away from me, and they came over right away. My brother brought bagels, and my sister tried to get me to come to her house so that I wouldn’t be alone. It was nice to know they cared – and to be honest, nice to have some bagels – but telling my family had been the hardest part. With that out of the way, I felt ok and just wanted things to be normal.

I had to go back three months later and have a sigmoidoscopy. It was the worst experience of my life. They inflate your colon, and you’re awake for all of it. It was miserable. I don’t think I even noticed the scope going in because it was already so painful from the air they pump into you. The nurse in the room only had one job – to rub my shoulder and tell me it was going to be okay. Normally, I would have considered punching her out. I would be really annoyed with this person I didn’t know rubbing my shoulder, but the pain was so bad that I didn’t even care.

During the sigmoidoscopy, they biopsied the same area again, but this time they found nothing. I had to go back a year after that and have another colonoscopy, and now I go every two years. Since then I have had two more colonoscopies that have found no abnormalities – hooray!

My mom is doing great now. She is at the doctor all the time, always doing some sort of test, but she hasn’t had any spread, and the cancer hasn’t returned. My family has all had colonoscopies. My brother’s have been fine, but all three of my sisters have had non-cancerous polyps. One of my sisters had to really fight her insurance company to approve coverage for her colonoscopy, even after she told them she had a 26 year-old sister who had cancer. She fought for several months and finally got one – and she had a polyp.
My mom has five living siblings, and none of them have had any polyps. We have not talked about getting tested for HNPCC (Hereditary NonPolyposis Colorectal Cancer) or anything genetic, but I feel that it has to be genetic. I’m a healthy person otherwise, and I don’t do any of the things associated with colon cancer; I exercise, I eat well and I don’t smoke. With my mom, my three sisters, and me, I know it’s genetic. We go for colonoscopies all the time and we talk about it; it’s a big topic of conversation in our family. We joke that my nephews are getting colonoscopies for their 5th birthdays. If I have kids, which I hope to one day, they will be getting tested as soon as their doctor will allow it. I feel like there’s no shame in it, no reason not to tell them.

In a way, I’m thankful for my experience. Because my polyp was cancerous, my doctors and I have been more vigilant with my health. I’m being checked so often that if the cancer returns, I feel confident that it will be caught early. A part of me is also thankful for my mom’s cancer. If it weren’t for her, I wouldn’t have gone to the doctor. I would have ignored the symptom, and it would have developed to a stage that is not as easy to treat. Believe it or not, I’m looking forward to a long life full of colonoscopies!