The beginning of my journey started in about the middle of April of 2006. This is when I really started to notice the major symptoms of colon cancer. It was about the same time that my mom was getting ready to have her next colonoscopy. I remember asking her what that thing was all about and telling her, “Mom, I’m not trying to have sympathy pains for ya here!” Little did I know that a few months later I would be having my first one!
My friends always joked before that I could burp the alphabet. Not really, but I did always burp a lot. It wasn’t really anything to cause me any alarm. Sometimes when I was working on films my stomach would get upset. I would get sick but I would play it off as nothing, thinking I had been working 12 and 16 hour days so of course my body is messed up. At one point my friends were like, “You need to get that checked out. My friend has such and such and you might have it.” When I asked my friend, whose father-in-law was an oncologist, he didn’t think anything that abnormal about the pre-symptoms I was having.
The whole thing that really set everything off was when I went to a movie. I had a hot dog and it was the weirdest thing because I was thinking, “Oh, I’m going to pay for this later!” But, it felt like my stomach was being pumped full of air and no gas coming out either end. I also had extreme upper back pain and I think that really threw the first doctor off. My Oncologist at IU said the first thing that came to her mind with those symptoms was pancreatic cancer. After about two or three attacks of that, my stools had changed, I wanted to sleep a lot more, and I didn’t want to get out of bed, which is weird for me because my middle name is “Go!”
I was living in California at the time and went to the doctor. I had the main symptoms of colon cancer but because of my age she thought I had gall bladder problems or maybe a bleeding ulcer. She felt a lump and thought it was an enlarged abdominal aorta. She set me up for an ultrasound but it was going to take about a month to get in. So I asked if they could call and get me in earlier. They did but they didn’t find anything. Every time they went over the spot where the tumor was it hurt so bad, but they couldn’t see anything. They acted like I was making it up but I was thinking, “Hey, something is really wrong with me!” I have never felt this way before in my life. You begin to get used to your bodies cycles, rhythms and quirks along the way. This was just not normal.
By that time I was on iron for my anemia. When I first went to see my doctor, I told her that I thought there was blood in my stool. She just stuck her finger up my butt and said, “There’s no blood here!” She never gave me an FOBT (Fecal Occult Blood Test) to see if there was actually blood in my stool. I had never been anemic in my life. I was the picture of ‘perfect’ health before all this stuff happened besides some dust and mildew allergies.
I was getting a lot weaker and I had to cut out all fats in my diet because I was getting so sick. People often say, “Oh, I know I need to stop eating bad but it’s so hard to do.” If you feel really bad, you will change your diet! I was in CA away from my family at that time. I went out to California to work on some films as a Costume Designer. I ran out of money and went to work for Borders at the Pike as a Training Supervisor. I just basically decided that I knew something was really wrong with me and decided to move home. My doctor had referred me to see a GI out there but it was another month wait. Something told me that time was not on my side. By the time I could see them I could go home and see my family doctor and start all over again.
I made a regular appointment to see my family doctor a month ahead of time to find out what was wrong with me as soon as I decided to give my notice to Borders and move home. Thank God I did because the first time I saw my doctor he gave me an FOBT. A lot of people hate that test but if it gets people screened for colon cancer DO IT! There was blood in my stool but by the time those results came back I had already had a scan after scan that finally revealed, “the mass.” You know it’s never a good sign when you get called into your doctor’s office to discuss your scan results. I had gone through and ultra sound, MRI, and the CT scan was the one that actually picked up the tumor. The doctor knew there was something bad when he felt my abdomen and felt something that wasn’t right. He kept asking me if it was causing me any pain. Later he would tell me that for the size of the mass he was really shocked I was not in a lot more pain and sicker than I was. Things were also moving a lot faster for me as far as getting scheduled for scans when I went home. I was actually being taken seriously and instead of waiting a month to get in to appointments/scans, I only had to wait a week or few days. I cannot say enough wonderful things about my family doctor. He never gave up on trying to figure out what was wrong with me.
The thought, “Cancer,” never even came to my mind, even when they said, “Mass.” You just don’t think it. I don’t know if it’s denial or what. Even when I was Googling my symptoms I was just thinking it was my gall bladder or something. It just didn’t occur to me that it could be cancer. I bet if I even entered my symptoms in to the search, I don’t know if colon cancer had come up if I would have even paid attention to it. My mom had had benign masses removed from her while I was in high school with her hysterectomy. How could I possibly have cancer? I was young, had no family history, and didn’t feel that bad. I remember naively asking my family doctor, “So when does my life get back to normal?” I mean come on! I’m not done living yet! I was just starting over after my divorce! I have things to do, Europe to go back to someday, art to make, a new life to start over, and maybe a family of my own to share and raise. From what I know now, nothing is ever going to be back to the normal that I used to know.
At that point, my doctor wanted to send me in for the PET scan just to get a clearer picture of my caner. Whatever it was, it was coming out! I remember calling to see when my colonoscopy was going to be scheduled. It was the day after I got my PET scan. I was just calling in to find out about my scope appointment and my doctor got right on the phone. He wanted to get me in the hospital that night or the next day. The tumor was a lot bigger than they originally thought.
That freaked me out and that’s when I think it really started to finally hit me. Originally they thought it was two separate masses. (It turned out to be one large one.) But the hardest part for me was to go into the next room after talking to my doctor and tell my parents that their daughter’s scan results were worse than they originally thought. I was glad that I had that night before to prepare myself to go in the hospital. I was admitted into the hospital the next day and then within that week I had my first colonoscopy and biopsy done and the next day we found out. The day after the colonoscopy I had my first colon resection. My family doctor diagnosed me with stage III colon cancer. The reason why I was diagnosed with Stage III, even though I had no lymph node involvement, was because the tumor broke through the colon wall. When the pathology results came back that none of my lymph nodes had any spread of disease Dr. Vogel shook his head in happy disbelief and said, “That’s as rare as a hen’s tooth.” Of course being new to the whole cancer thing we had no idea how wonderful that news was.
I remember the first time I met my oncologist. I was sitting across from him in my hospital bed and he said, “You’re too young to see me!” I think at that point they hadn’t diagnosed me yet but my doc had him come in and see me. My family doctor really put my whole treatment team together. He is really old-school, he put the whole team together from his under grad college Wabash College, and they are all good guys. I could not ask for a better treatment team.
When the surgeon came out to talk to my family my mom could tell that he looked upset, but he composed himself. He told my mom that he had to stop halfway through my surgery. The tumor was wrapped around my mesenteric vein and the head of the pancreas. I am really glad he did stop because at that point I would have only had about a 10% survival rate if they had tried to take the entire thing out. My outlook was not good at that point. They were only giving me three years to live after that.
I was still in anesthesia and so you don’t remember a lot. I remember hearing my sister saying she wasn’t going to go on this trip and I remember pointing my finger at her and saying, “You are going and you are taking my camera too!” So my philosophy is that cancer may happen to you or to a loved one, but you can’t stop living. There are things you have to change because of treatment or whatever, but you can’t stop living. To me, goals and dreams are everything and that’s what keeps me going. I’m very goal-oriented about the things I want to do. I know how much that means to me so I couldn’t have a loved one give up their stuff for me. Life has to go on.
That was a really rough time in my life and for that first surgery I was really freaked out. You are just in such a state of shock in the beginning. All the people were absolutely amazing, the hospital had a really great staff, and I cannot say enough wonderful things about my entire treatment team.
I went up to IU (Indiana University???) for my second opinion. I saw my now second surgeon. I didn’t really understand why the tumor had to be left in there. I didn’t understand before that I only had a 10% chance. He told me that if the tumor shrunk down that my chances for a successful surgery would go to about 90 or 95%. They had removed about an egg sized tumor already from my colon and we had to shrink the remaining tumor from baseball to golf ball size. Since IU was 3 ½ hours away I took my 12 cycles chemo in Evansville that consisted of one week on and one week off. Both Oncologists (IU and Evansville) agreed on the same kind of chemo. I feel kind of lucky that they used Avastin on me with only being a stage III. I think they usually only use it on stage IV.
After 9 years of marriage ended in 2005, I went to CA, to try to start over and get my life back together again. I wasn’t really starting over, but after years of having negative thoughts I was trying to turn that around. I decided to make the little shrink signs, an upside down triangle which I plastered all around my house and asked everyone to help, “Think Shrink,” for me! It helped me as a silent reminder, and I think as far as caregivers and supporters go, it was a way for them to feel that they could be proactive in my treatment. To me, they didn’t know what to say, what to do, and to me this is a little way to help that other person too.
By my third cycle, my tumor had shrunk about 30% and by the 7th cycle it had shrunk about 50%. It was now the size needed for surgery. By Thanksgiving time we had the best news. My original CEA level (colon cancer tumor marker) was only around 8, which now I find out wasn’t so bad. But by Thanksgiving it had been coming down all the time and had gone up just a little at one point but then it was down to less than .5! This is less than the normal range of 2.5 for a non-smoker! My oncologist is a character, so when he came in smiling, I mean just beaming, that day I thought, “Uh-oh. What does he have up his sleeve?” I think he was trying to not get my hopes up in the beginning and so to see him that happy I just thought it had to be good. The words he said were, “There’s no evidence of disease in you.” And later, when they went in for my second surgery the tumor was all dead.
So I thought, “It’s time to get that sucker out of there,” but they wanted me to finish my chemo. Either it would shrink more or it would at least stay the same for when I did surgery. The first colon cancer survivor I talked to said make sure that you finish your chemo cycles. I really wanted to get it out but I knew that I needed to finish chemo, just to make sure and get anything out floating around in there out of me.
Before I went up to IU again, my oncologist was leery of me getting the second surgery because I had enlarged lymph nodes around my tumor area. But when I went for the second opinion from the second surgeon up there I had already decided that I was getting the surgery no matter what! My sister told the surgeon that I was going around the house saying, “Get it out! Get it out!” So he turns to me and says, “I take it you want the surgery?” half smiling and half serious! I even looked down at my stomach and thought I could get that out myself if I really had to! I’m a costumer so I’ve got some nice sharp scissors at home! Ok, I’m a big chicken and would never have done that, but I was pretty determined to get that thing out!
I was finally approved for the second surgery! The whole time we knew that we were looking at the Whipple procedure, where they take out the tumor, gall bladder, head of pancreas, bottom part of stomach, and then everything gets rerouted. It’s up there with brain surgery in complexity. I didn’t care though because I just wanted it done and that tumor out of me!
All we knew about before going into the surgery was Plan A and Plan B. Plan A would be the Whipple and they remove the tumor. Plan B was if they found evidence of cancer they would leave the tumor in and hook things up in a different way and basically give me a better “quality of life.” Ok I was screwed. I was like, “Oh, hell no!” But of course you don’t have any control over what happens in surgery. You don’t know what’s going to happen until they open you up and look around. I said as soon as I wake up they’d better tell me if they did the Whipple or not!!!
The surgeon said that a longer operation was better and he was thinking it was going to last at least 6 hours. If they came out earlier, then that meant that they went with Plan B. When the nurse came out early and told my family that they were finishing up, she saw the look on their faces, and said, “Oh, no it’s a good thing! It’s good news!” They still didn’t know what had happened. You see, we didn’t know there could be a Plan C. They told me as soon as I woke up that I didn’t have the Whipple but it was good news and I was just thinking, “Huh?” because I didn’t know there was another alternative! When you’re waking up from anesthesia your brain isn’t exactly at 100% either!
They were able to take the rest of the tumor completely out!!! My pancreas was just bruised maybe from where the tumor had been pushing on it. That tumor wasn’t wrapped around the vein anymore. I don’t know if it unattached itself or if it was never really attached and just too much of it was around to really tell. We have no idea. I’m just extremely thankful that it went a lot better than any of us could have ever imaged. Going into it I was prepared for this major surgery and coming out of it, knowing that it turned out better than any of us ever thought it could was simply miraculous.
For my first surgery I didn’t know what was going on and I didn’t know what to do. The best thing about my second surgery was that they actually let me walk into the surgery room. That was great because I was strong enough and I was ready to fight this thing. At that point we knew I was going to be in the Colondar and my sister told my surgeon, “Make it (her scar) pretty! She’s going to be in a calendar!”
I found out about the Colondar through the Colon Cancer Alliance (CCA) website. I took my pages for my treatment binder off their site and I was looking around to see what they had. That’s when I saw the thing about the Colondar. I ordered one and said, “Well, this is really cool!” Then I wandered on to The Colon Club website just to see what it was. I think the thing that really interested me is that it’s for people my age. CCA is great, but I didn’t know anybody my own age that had it. Everybody I met at chemo was a lot older than me that had colon cancer. Even though I love all of my chemo buddies, I couldn’t identify with what they were going through. They couldn’t identify with what I was going through, especially being single, divorced, and ready to start my life over again and then crap! I thought, “Is that the only life I’ve had to live?” About halfway through my marriage I went back to school and it was 2001 right before September 11 happened. I had finally been able to get my Bachelor’s degree, graduated magna cum laude, and finished in 2005. I’m there, ready to take on the world and it was just a huge shock.
Now I feel that I am truly ready to take on the world. I told a friend once I got better I’d be a force to be reckoned with! I am still currently in NED (no evidence of disease) and hope to remain that way! I will be constantly monitored for the rest of my life to make sure that my cancer doesn’t come back.
My sister had a great thought about my cancer. The physical removing of the disease was a way of getting rid of things from the past and now I could really move on and start over. It really made me rethink and let go of things in my life. I truly had to heal from the inside out. I finally let go of all that anger, forgave my ex, and let go of many more things in the past. When I was in California it was like all my karma in my life was catching up to me. Murphy’s Law was not my friend! If it could go wrong it did out there! Now my life is more in balance and things are starting to just click. People tend to look at me kind of weird when I say, “I know it was a terrible thing that I went through but I am thankful for it. Cancer has made me a better person.” The people I have come to know and love have so much more depth to their lives. I enjoy simple moments now even more than ever. Every day is gift. I could not have made it this far without the support and love from my family and friends how got me through so much.
Now I’m doing all I can to get the word out. I’m designing apparel and accessories to get the word out to get people screened and aware of the signs and symptoms of CRC. I’m making a costume for Captain Colon! Once my pug gets to her full growth she’s going to get a polyp costume made and become the Polyp Pug! I’ve been doing public speaking and am involved with CRAN (Colorectal Awareness Network) through the American Cancer Society (ACS). I also do advocacy for ACS for the fight against cancer. I also started a website (www.thinkshrink.info) to help other cancer survivors and co-survivors in their battles.