Lifting the Taboo on Colon Cancer
Every person’s story and experience with cancer is unique. Yet they all share a common quality. The details of the diagnosis and treatment may vary but they all have the inspiring characteristic of a transformative effect on the survivor’s life. Fashion designer Carmen Marc Valvo shares his journey of being diagnosed with colon cancer, where he found strength, and how he’s using his experience to help others.
KAS: How did you discover you had cancer?
CMV: It was 2003. I was about to debut my fall collection at the time and during the course of the period I realized something was wrong. I just knew something was wrong. I always say everyone should be his or her own best advocate. Everybody knows his or her body better than anybody else– better than a doctor.You need a doctor that doesn’t just hear you but also listens to you.
If you don’t have that doctor than you need to find another one.
KAS: Did you have to go to multiple doctors?
CMV: No, no, no. However, I almost was about to because I just went to my GP [general practitioner]. We did all these tests to figure out what was wrong. My blood work came back fine. Everything was fine. I said this is not right. My body clock is off. My rhythms are off. So the only thing I could think of to do was a colonoscopy. So I went in for a colonoscopy. This was the same time that my partner had just lost his mother and I had to put my poor little cat to sleep because he was 21-years-old and couldn’t walk – and three days later I had the colonoscopy. I was awake at the time because they don’t put you down one hundred percent. So I was intrigued and looking at the camera. Then I see it and I think, what’s that? And I said, “Oh my God”. And I looked back at the doctor and he said, “You have cancer.”
KAS: Just like that?
CMV: Just like that. It was so big [the tumor].
KAS: So your GP referred you to someone else?
CMV: Yes. I called and said “ Hi Allen [GP], its Carmen. How are you?” He asked how is everything. I tell him, “I have cancer.” He says, “Stop. You’re going crazy. You’re out of control.” I said, “I’m not out of control. I have cancer. I want this removed. I want this thing out of me. I want it out fast. I don’t want to have big scars. I want endoscopic surgery. Get me somebody. Get me somebody good.”
KAS: Very matter of fact.
CMV: Yes. I have to do this now. I told my doctor that I wanted this done within the next two weeks and I never told anyone. I told my partner and I think maybe one other person in the office.
KAS: Why didn’t you tell anyone?
CMV: I didn’t know what the outcome was going to be. If my time was going to be over, it was going to be over. I didn’t want the big drama. Our industry is so full of drama anyways; I could just imagine what this would turn into, and I didn’t want that. I did all of my tests early in the morning – the many, many cat scans and MRIs – and I arrived to work around 9:00 to 930 am every day. I scheduled my surgery two weeks and two days after I received my diagnosis and just told everyone that my sister was having some minor health issues and that there wasn’t anyone to take care of her kids, so I was flying down to Florida to help. I had the surgery on a Monday, they removed all the cancer, and I went home on Thursday.
After it was done, I think at that point it was about two weeks after, and I called the family to let them know. They all said, “Why didn’t you tell me?” What were they going to do, hold my hand? No.
However, I did tell everyone that they needed to get a colonoscopy.
KAS: Everyone in the family needed to get one?
CMV: Yes. And after I tell them this, I find out from one sister that our aunt had colon cancer. Well, I never knew this. Then I found out on my mother’s side there was a cousin who apparently had colon cancer when she was 34 and it spread so far that half of her stomach, liver, and large parts of her intestines were removed.
KAS: The doctors told you that if you have it you need to let other people in your family know because the likelihood of them having it is higher?
CMV: Yes, exactly. But I also knew that too because colon cancer, usually it’s genetic.
KAS: Did they not know that they were supposed to let everyone know, or do you think they wanted to keep it private?
CMV: There have been great strides that have been made in breast cancer awareness. I think though that colon cancer for the most part was something not talked about and there are still certain cancers that people just don’t want to talk about— like colon cancer. Who wants to talk about their butt or their bowel movements? Is that something that’s glamorous? No, it’s not. I think there’s a whole educational process that’s necessary to educate everyone that you should not keep these secrets inside. There’s nothing to be ashamed of. If you have a cancer it should be shared, especially with members of the family.
KAS: Did anyone else in your family go get tested and end up having colon cancer?
CMV: There were a few pre-cancerous polyps but most of my immediate siblings were fine. My youngest brother however, it took him almost six years before he had a colonoscopy. And the only reason he had a colonoscopy is because his little son who was four-years-old at the time started having rectal bleeding and they didn’t know what was wrong with him so they decided to give the boy a colonoscopy and they found a pre-cancerous tumor in a four-year-old child. It turned out that wasn’t the reason for the rectal bleeding, that he was actually lactose intolerant, but in the course of it all they found the tumor. So that’s why my brother decided it was time to do it.
KAS: So obviously your cancer affected everyone in the family?
CMV: Oh yeah. Absolutely.
KAS: I know you said your family’s initial reaction was, why didn’t you tell me?
CMV: Yes. They said, “I could have been there. I could have helped you.” No, you couldn’t. I think that anyone who has cancer goes through the journey in his or her own way. There’s no right or wrong way to do it. At least I started the conversation with them that they needed to be tested. One of the biggest problems with colon cancer is the lack of… well, you need to spread the word that people need to be tested. It’s so curable and so preventable but it has to be detected at an early stage. If it’s not than basically you’re signing your own death warrant. There are too many horror stories and there’s just so much you can prevent. The fact you find so much especially in the Latin community and in the Asian community I mean the men will not be tested for colon cancer. And again, I have a friend who’s Asian and he is not doing well. And the colon cancer he just let it go. He didn’t want to do it. There’s some sort of culture or cultural macho
I don’t know what it is but it seems there’s a sense of de-masculinization. You know the idea of sticking something up your anus or rectum is gross but it’s such a simple, minor procedure. It doesn’t hurt at all.
KAS: You had the surgery but did you do anything else beyond that? Chemo or radiation?
CMV: I did not have to do chemo or radiation. I was very blessed in that respect. Your cancer stage is defined by A, B, C, and D. B is Break-through. C is Cancer-ridden and D is Dead. I wasn’t quite C but they did find 17 pre-cancerous spots and had to do 17 biopsies. I went to an oncologist after my surgery and everything else I was supposed to do in the follow-up work and had another colonoscopy. I saw the oncologist straight through that time period and they found nothing. Everything was clean and they said for the most part you have a clean bill of health. Now the following year — so now I have to have a colonoscopy every year, which is no big thing — I went to get checked out and there were 3 pre-cancerous polyps. The next year there were two and so basically the doctors were like I’ve never seen anybody like you. You’re like a cancer producer. So mostly you don’t have to go get checked out but every five years or ten years. For me, it’s now every year.
KAS: So whenever you go in for these pre-cancerous cells you just go in and they remove them?
CMV: Yes, they remove them. They do the colonoscopy and they just cut them out. It’s so simple.
KAS: You seem so matter of fact about the whole thing. Did it affect you emotionally?
CMV: I dug up my front yard and planted a whole new garden. And that was my way of dealing with the cancer. It was sort of an emotional outlet because even though the cancer was out, I still didn’t know for a year if I needed the radiation or the chemo. I still didn’t know if it was really gone. And the doctors told me that I probably wouldn’t know for five years if it was completely gone.
KAS: So there was a lot of uncertainty?
CMV: Yes. There is with any cancer. Even when they remove it, the chances for relapse are high.
KAS: So it just stays with you physically and emotionally.
CMV: Yes. So what I decided to do is eliminate anything I didn’t want in my life. I didn’t want any negativity.
I removed people around me that were just negative. Life is such a precious gift so why do you cloud it with things that are going to make you depressed? You should enjoy every single day that you are alive.
I put in my garden and my next collection was totally dedicated to my garden, which was a metaphor for life… growing the garden, planting the seeds.
KAS: What were you growing?
CMV: I transplanted three peonies. When I first planted them, my friends advised against it, telling me how difficult they were to grow. When I had to move them, they all told me they were going to die. But I had to move them because they were going to die where they were because they weren’t getting enough sun. When I moved them I made this strange mental connection with the garden in regard to what was going on with me. Every time they looked like they were about to die, I would think I was about to die. But then they started coming back. It was a very bizarre parallel. Anyway, they’re surviving and thriving. They’re gorgeous and they’re happy. Then I planted another 30 white peonies next door.
KAS: What a happy place.
CMV: I know. My garden is beautiful.
KAS: So you ultimately decided to go public with your cancer? How did that come about?
CMV: For a couple seasons Olympus took over sponsorship of New York Fashion Week. Little did I know, they [Olympus] made the camera that travels through the intestines and somebody, one of the board members or someone’s family was affected with colon cancer. So they [Olympus] were very charitable when it came to colon cancer. The CFDA [Council of Fashion Designers of America] sent out a letter asking if anyone knows of anyone in the industry that has a connection to colon cancer, as this could be a wonderful time to share it with the rest of the community.
I said at one point to myself, God gave me this thing for a reason and I need to do something with it. Then this platform was handed to me by the CFDA. At the same time Katie Couric contacted me and I found that she was going to do a press conference for the opening of Fashion Week with Anna Wintour, Heidi Klum and Iman and I gave a speech too. I thought I was going to be okay with it, the whole concept of going public, but it was so hard.
KAS: Was a weight lifted?
CMV: It all came back. I was shaking and Iman had to hug me. She started crying and then I started crying. It was just so crazy and emotional. I think it was cathartic in a certain way to get to that point where I wasn’t so private about it, to come out of the cancer closet.
KAS: So the support was overwhelming?
CMV: It was just the fact that I was so private and all of a sudden I’m totally exposed and that reality – it was very hard.
KAS: It was a lot easier to control your emotions whenever you didn’t have to share them with someone else.
CMV: Right. Some of the stuff you put out of your mind because you just don’t want to re-live it. It had been almost three, maybe four years since I was asked any of these questions and I wasn’t prepared. To be asked them would make me emotional. Yes, I could be matter of fact because its one part of my nature to take care of this quickly and have this removed but that doesn’t mean there wasn’t an emotional rollercoaster going on at the same time.
KAS: Do you think ultimately it helped you to tell everyone? That it completed the entire healing process?
CMV: Yes, because I think I’m helping people.
KAS: You are helping people. Do you think had you not told everyone the way that you did that you probably wouldn’t have?
CMV: I would have never talked about it. I would have talked about it with close family and a handful of friends. But now my goal is to raise the conversation, to kind of make colon cancer glamorous and something we are willing to talk about. I did a public service announcement with Vanessa Williams and we are talking about doing another one again. And again it’s to raise awareness about how curable, how preventable this disease is. It’s all about the conversation, finding out family history and early prevention.
KAS: What’s your advice to someone who is diagnosed with colon cancer or any cancer?
CMV: I think to have a very positive outlook. To never go down that dark hole because I think your emotional wellbeing is important, if not the most important part of the entire healing process.
Category: Survivors in the News
Tags: Carmen Marc Valvo, colonoscopy, Council of Fashion Designers of America, Dressed to Perfection, Katie Couric, polyps