August 2008

Rebecca’s Colondar Bio

Although she had a golf ball sized lump under her belly button for several years, Rebecca never gave it much thought. Her doctors believed that she had a hernia, and Rebecca delayed surgery for nearly six months while waiting for health insurance.

Before surgery, Rebecca mentioned to her nurse that her father died from colon cancer at 36. Because of her family history and symptoms, her nurse recommended a colonoscopy. At 25, Rebecca was diagnosed with stage III rectal cancer and Familial Adenomatous Polyposis (FAP), a genetic condition where many polyps form inside the colon and turn into colorectal cancer unless the colon is removed.

Attempting to avoid an ostomy, Rebecca had chemotherapy and radiation but was devastated when she needed one anyway. She researched and found out about the K-Pouch, a procedure that would allow her to wear a patch over her stoma instead of a pouch. After surgery, she adapted quickly to her new plumbing and now irrigates a few times a day to let out waste.

She now feels empowered, and her attitude has changed dramatically. She finally sees herself as a survivor and has become very outspoken about cancer and her ostomy.

Rebecca’s story as told by Rebecca

You always hear stories about blessings in disguise, and coincidental life-saving events. I think I was one of those people who would have denied believing in such things. However, looking back to two years ago, I almost have no choice but to believe.

Like many others in the Colondar, I am not your typical colon cancer candidate. I was young, active, just graduated from college and was ready to start my life, and for all intents and purposes, perfectly healthy. I prided myself on living a relatively clean life. I never smoked, barely drank, never did any heavy drugs, ate pretty healthy, and exercised at least 4 days a week. I thought I was doing things right.  I also never took my health lightly. I went to my check-ups and doctor visits regularly, and was always very observant in any changes in my body. But I knew cancer was in my family as well, so that always lingered in the back of my mind.

My father passed away from colon cancer in 1986. He was only 36 years old. His cancer was actually caused by a genetic condition known as Familial Adenomatous Polyposis, or FAP. He knew there was something wrong with him and he ignored it for years until it was too late. I was 6 years old when he passed. I knew he had cancer, and what type, but I was too young to know all the ramifications. I adjusted relatively quickly. But again, it never left the back of my mind. So when I noticed a pretty prominent lump below my belly button, I was mildly alarmed. I figured whatever it could be, I surely had noticed it early, and it would probably turn out to be nothing.

I went to my gynecologist thinking it was some female problem. She did some tests, and figured it may be a hernia. She referred me to a surgeon, who also did some testing, and also decided the lump was probably just a hernia, though she did have her doubts. She recommended I have hernia exploration surgery. It was elective surgery, and she did not lead me to believe that it was very urgent. The lump did not bother me in the least little bit either, so out of fear, or out of nervousness, or both, I put the surgery off.

I only began considering it again because my mother, the nurse, planted the possibility that I could make the hernia worse with the form of martial arts that I practice. I didn’t want to push my luck by waiting longer and doing more damage, so I went back to my surgeon after several months to reschedule surgery. Since it had been so long since I initially scheduled surgery, I had to come in for another office visit, and do all the surgery pre-op testing again. At this time my surgeon had a new nurse in her office. The nurse recognized my name, and asked if my mother was Mary. It turns out she went to nursing school with my mom and remembered my family. Nursing school was before my father became sick, so when she asked how my mom and dad were doing, I told her my father had since passed away from cancer. This news set off her nurse-alarms, and she inquired a little further as to when, how, and why. When I told her what happened to him, she immediately asked if I’d like to throw a colonoscopy in with all my pre-op tests.

**I need to clarify at this point that I have always listed my fathers’ history when filling out my own medical history forms at ANY doctor I saw, right down to my dermatologist. It was never something I kept secret. For some reason, it was never questioned by most any doctor I ever met. That was, until this one.

I thought I was being extremely responsible, but nothing more than that. I figured I would get this horrible idea of a colonoscopy out of the way, and wouldn’t have to think about it for many more years to come. It was easy not to think about getting it done, b/c I was also in the process of planning the very first vacation overseas with my mom. We were scheduled to leave a few days after my colonoscopy. I focused my energies on booking flights and hotels, instead of clearing out my colon.

Prep day came, and I took it like a trooper. Truer words were never spoken than “It’s not the colonoscopy that is bad, it’s the prep for it.” I couldn’t very well ignore it now; it was all I thought about when I spent the day drinking water and chicken broth watching others around me eat pizza and chocolate. My colonoscopy was scheduled first thing in the morning, bright and early, and all I could think was how great it’ll be to have this all over with.

After nearly losing it in the waiting room that morning due to dehydration, I walked to the registration desk and curtly informed them that if they did not take me in this very moment and knock me out, I was going to go chug all the liquid I could and wash it down with a few dozen donuts. Although I’m sure it came out sounding not nearly as cool as, and probably a lot more desperate than I meant it to. Not too much later however, I was being put under anesthesia for the first time in my life. The rest is a blur as the next thing I knew I was waking up in the recovery area with little cups of apple juice being shoved under my nose. Incidentally, I was never a huge apple juice fan, but that juice tasted like the finest wine in the world at that moment.

Nothing was said of the colonoscopy, the doctor told me what I should and shouldn’t do in the next few hours, and after some wobbly attempts at dressing, I was discharged to go home and lounge for the rest of the day. A few days later, I was on a plane headed to Amsterdam, not giving my colon another thought.

Unfortunately our great European adventure was cut short because my mom injured her knee. Upon getting home, the very next day my mom called, very upset, insisting I need to come by to talk with her. I had no idea what was going on, but my colonoscopy wasn’t on my mind at all. When I got to her house, she barely could get out the news. During my colonoscopy it was apparent within minutes that I had the same thing my father had, FAP. My colon was carpeted with polyps, and some suspicious masses were biopsied, though it was already highly expected to return as cancer. My world essentially screeched to a grinding halt. Crazy emotions flew through my head but for some reason, surprise was not one of them. I can’t say that I fully expected anything like this in the least, but yet in still, I was not surprised.

The only thing, in fact, that did surprise me, was that my mom had kept this information secret through the whole vacation. She’d asked the doctor before I woke up if it was absolutely necessary to tell me now, or could she wait until I returned from vacation, so it wouldn’t be ruined. He said it would be fine, and gave her some contacts of various surgeons and oncologists to get the ball rolling by the time we were back. And rolling it certainly was. Within that week I was meeting my potential surgeon and oncologist for the first time and working out my treatment plan. It would include having a port-a-cath implanted, starting chemo as soon as it was in for 6 cycles, then doing five weeks of radiation with oral chemo, surgery to remove my colon, and finally a follow up 6 rounds of chemo.  There were a lot of issues to face all at once, and at times it felt way too overwhelming. Everything from my own mortality, body image issues, and physical side effects, to money and insurance coverage, planning for the future, and trying to live a current “regular” life. I’m not quite sure what my method was for dealing with it all other than I tried not to focus on everything all at once, and tried my best to put things to the side and trudge on. Of course these issues all kept cropping up, and I had good and bad days, but as much as I could I would not dwell on things that were out of my control.

I had some hang-ups through the course of initial treatments, my port site wouldn’t heal up properly. My insurance was skimpy and maxed out immediately. There were discrepancies in which specific treatments I would have, and my car was stolen. Yet even so, the time seemed to absolutely fly by. I suppose its not true what they say. Time does not only fly when you’re having fun, because I was having anything but fun.

I spent a lot of time online researching everything I could. I found message board communities and made many online friends that helped me understand and come to terms with a lot of things I was facing. Sometimes searching online yielded way too much information, and there were periods of time when I had to take breaks or screen what I read. I was very careful about seeing too much at once. And constantly reminded myself that a lot of information I read online was subjective, out-dated, or did not pertain to my particular situation. It was an immeasurable relief, however, when I found The Colon Club’s website. I cannot express the immediate relief I felt upon reading stories of people who were so similar to me. Up until finding the message boards for The Colon Club, I felt like an orphaned patient. I felt like an oddity, and very isolated. It was immensely helpful to be able to ask questions and get feedback while going through the rigors of treatment.

I did everything my doctors recommended. All of the tests and drugs and procedures, I did it all with minimal complaint. That is, until it came time to recommend the type of surgery I would receive. The general consensus among my doctors was that I should have my colon removed and a permanent ileostomy put in place. I was hoping to be a candidate for a j-pouch, but due to where the tumor was located in my rectum, they felt the sphincter muscle could not be preserved and therefore the results would be disastrous. I absolutely resented these recommendations. I saw three of the top ranked doctors in Chicago and they all recommended the same surgery plan. I was again in a position where I was out of control. Everyone reminded me that while this was not the outcome I would have wanted, it was going to keep me alive. I remember many times telling these same people that it’s easy for them to say it so simply when they weren’t the one who’s entire life was being turned inside out, for the second time.

Dissatisfied with my options I feverishly researched anything else I could find, even down to Artificial Sphincters. The researching led me to a surgery known as a Kock Pouch, or K-pouch. It was actually an older surgery than the currently popular choice of J-pouch but had fallen out of favor with most patients in light of the J-pouch. It was still being performed in the states, only by a handful of doctors. The surgery involved removing the colon, rectum and anus, and creating a pouch from the end of the small intestine. Then an opening to the pouch was brought out through a stoma opening on the abdomen (as in an ileostomy or colostomy). The main difference in the K-pouch is that the pouch is kept continent by a ‘valve’ created from the intestinal tissue, internally. It is known generically as a Continent Ostomy. There were pro’s and con’s to the surgery, which I familiarized myself with. But even with knowing the con’s, it still appeared to be a better option for me personally. I talked with my surgeon here, Dr. Saclarides at Rush University, in Chicago about this option and he referred me to a surgeon who is considered to be in the very top in the country in not only colorectal surgery but specifically in the K-pouch surgery. Dr. Fazio was well respected all around and I felt confident about going to him for my surgery, but he was located in Cleveland. I gave serious thought about having to go so far for this intense procedure, being far from family and friends, and always having to travel long distances for check-ups or if anything went wrong. But ultimately, my desire to have this surgery over the standard one was larger than my fears about traveling so far to a doctor. The arrangements to meet with Dr. Fazio were made, and finally, after a year of treatments and not knowing what my outcome would be, I was scheduled for surgery on September 26, 2006.

The surgery was no fun, as anyone would imagine, and they sure did a number on me while I was in there. I was under for almost 8 hours. So the recovery was a bit slow, although I was out of the hospital in just under 9 days. I remained in Cleveland for a few days after being released, and after a minor hang-up with a wound infection at the incision site, I was given the go ahead to return home to Chicago. I’d lost a lot of weight, and had a brand new plumbing system to learn to adjust to, and was also instructed to start chemo again immediately. So again, even though the hardest part was supposedly over, I was not out of the water yet. I was set to undergo the last of my chemo treatments during the dead of winter in Chicago, which proved to be extremely tough on me. But now I was so close, I saw the proverbial light at the end of the tunnel, I knew that I just needed to get through a little more. I counted down the treatments. One down, five more to go….two down, four more to go. Setting my sites on the day I’d be done completely with chemo kept me going relatively strongly.

The very last treatment was difficult to get through. My white blood cell count just would not go up, and the neuropathy side effects from the chemo were getting stronger. After a few days of shots to boost my white blood cells, and no significant change, my oncologist decided to taper back the dosage, and go ahead with the last treatment. I trudged through it, and barely had any energy after to celebrate my graduation from “chemo school.” That last treatment was the beginning of February of 2007.

Now I am trying to get my life back to some sort of normalcy, working more, and thinking about going back to school. I have to monitor and do routine maintenance with my doctor’s b/c of the genetic condition that caused my cancer. I will be checked regularly and indefinitely. But I’ll take an upper endoscopy any day over a colonoscopy! It has been one year from surgery, and it feels almost like it was last month. It’s hard to believe that so much time has gone by and to realize that I’ve gained my weight back, my energy level has gone back up  and my hair has stopped thinning. It feels great to be able to look back and know that I made it through whatever was thrown my way. I didn’t want it, I didn’t know how to deal with it in the beginning, but I survived. I’ve learned some hard lessons, and gained a new appreciation for everything. Nowadays I’m working on making sure this experience is not wasted, and posing in the Colondar has shown me how fulfilling it is to share what I went through with whoever is interested.

UPDATE: Becca “won” her battle with CRC on March 24, 2012, free from any pain and cancer’s control.  Click Here to read Becca’s obituary.