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CAROL LOLLIS

Carol Lollis chose to have reconstruction that entailed forming a breast from tissue taken from her abdomen. She sought to share her story with Gazette readers in both words and pictures, including this one.

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KEVIN GUTTING

Gazette photographer Carol Lollis is back on the job following a mastectomy and reconstructive surgery in July.

Last September, Gazette photographer Carol Lollis was diagnosed with breast cancer. Her treatment included six rounds of chemotherapy over 18 weeks, followed by a mastectomy and reconstruction surgery, in which some of her abdominal muscle, skin and fat were used to create a new breast.

As she went through the physical and emotional adjustments brought on by her diagnosis, Lollis found that deciding about reconstructive surgery was one of the most daunting parts of the process. Her experience prompted her to volunteer her story as one of several focusing on reconstruction here. Throughout the past year, Lollis, true to her nature, was open and candid with friends and co-workers about what she was going through. A photojournalist to her core, she chronicled her story with her camera. Some of the self-portraits she took during the last year can be seen by visiting this story at www.gazettenet.com.

Lollis, 45, lives with her husband, Sam Taylor, and their three sons, ages 15, 12 and 9, in Westhampton. She and I recently looked back on the past year and the decisions she made along the way.

Q: Do you remember the moment you knew something was wrong?

A: Absolutely. I remember finding the lump. I'd been reading to my son Mason and I called Sam upstairs. We were standing at the mirror in the bathroom, and I remember asking him, What do you think this is? Somehow we knew that it wasn't going to be a simple thing. I remember Sam leaning his head on my back and both of us feeling like "Here we go."

Q: And then the tests.

A: I went to the mammogram and ultrasound by myself - that was before we were savvy about going to appointments together - and I quickly realized that it wasn't going to be good news. They made me wait, they said the doctor would come see me. I called Sam and said you need to come down. The doctors were very good about saying it was early, it's small, you're going to be OK, you're going to be OK, you're going to be OK. So I just always thought I was going to be OK, and that's what I told my kids.

Q: You had a lumpectomy first?

A: From the very beginning, I fought doing a mastectomy. But my cancer just kept getting more and more complicated. I went in for two lumpectomies and they still hadn't gotten clear margins. They wanted to start chemo right away.

So my experience was backward - most women have the mastectomy first and then the chemo. That gave me time during chemo to think about what I wanted to do next and a lot of women don't have that.

Q: It sounds like you eventually reconciled yourself to a mastectomy.

A: Once I'd gone through chemo, the idea of ever having to do that again, or even doing radiation - I was really clear that I didn't ever want that. I didn't want any inkling of the surgeon not getting it all. I thought, I'll just have a huge peace of mind if I have the mastectomy.

Q: Did you ever consider doing just the mastectomy, with no reconstruction - and just using a prosthetic breast form?

A: I remember talking to Sam about that. He felt I would be happier with reconstruction and he wanted me to know that he was in it for the duration, no matter what I chose.

When I lost my hair during chemo, that was a really hard transition for me. Every day, I had to think, What am I going to wear on my head? If I was at home and someone stopped by, I had to think, Should I put something on before opening the door? I didn't want to be constantly in that place. I didn't want to be thinking, Should I wear the prosthesis today or not? I wanted to get to the point where I didn't think about it anymore. I wanted to be in the place where I could move on. I wanted to wear tank tops in the summer, and I didn't want to have to rethink all that.

Q: So that meant reconstruction. What were your options?

A: At first, they said they probably couldn't take muscle from my stomach because I was too thin. That changed later on because I gained weight during chemo. And I was very nervous about taking a muscle from my back.

(Lollis is referring to two kinds of reconstruction. In a TRAM flap procedure, tissue is taken from the abdomen; in a latissimus dorsi flap procedure, tissue from the upper back is used.)

Q: What about an implant?

A: I just had a gut feeling about implants that I wasn't going to like them. I'm not sure where that came from, but the idea of having these perky little breasts - that's not me. I'm 45, I've had three kids. Other people told me, oh, that would be great, but I was like, hello! I'm not 20. The idea of having this thing, this harder, perky breast in there, was not that appealing to me.

Q: Where did that leave you?

A: I'd read about another option, the DIEP, [a procedure in which surgeons take tissue without muscle from the abdomen.] There's also one where they take fat from the thigh.

(The DIEP procedure is not performed at Cooley Dickinson, where Lollis had had her chemotherapy. Through the Northampton hospital's connection with Massachusetts General Hospital in Boston, Lollis consulted with doctors there about the complex DIEP procedure.)

I walked in saying, I want the DIEP and basically the surgeon there talked me out of it. At that point, I didn't want the TRAM flap because from what I'd read, it left the area of your body weak where they take the muscle from and I'd read on the Web that you can have problems later on with hernias.

He was very clear that he could do either one very well. But with the DIEP there is a risk and he told me he didn't think it was worth it. If you were an Olympic rider or a swimmer, he told me, I'd consider it. He said he didn't think I'd miss the abdominal muscle and that my other muscles would compensate for it.

Q: Were you convinced?

A: In the end, I felt like the doctors need to believe in what they're doing. And I wanted him to walk into the surgery feeling 100 percent sure that this was the right thing for me.

Q: Did Sam have an opinion about what course you should follow?

A: With reconstruction, we were pretty much on the same page. I remember asking him, are you up for this, because the surgery and recovery will be harder with three kids. He was quick to say yes.

Q: Throughout this process, did you find information online that was helpful?

A: That got complicated. I spent a ton of time at home, researching and researching. I couldn't get an answer as to whether people who had the surgery that uses the shoulder muscle ended up missing that muscle. I just wanted to ask someone. There's tons of stuff online but it's totally overwhelming and daunting and I never could find what I wanted.

Q: What were your friends saying?

A: I had friends who said they felt like my body had been through enough, and that using my muscle was like robbing Peter to pay Paul, and that the doctors were wrong - I would miss it.

Q: Was that helpful?

A: You kind of get where everyone's coming from, but it's completely your decision. That sounds like a no-brainer, but it isn't. It's completely you that you have to answer to and the reality is that what other women would do is somewhat irrelevant. It's a soul-searching thing, it's exhausting, and it's filled with medical information that you're trying to wade through.

In July, Lollis had her surgery and reconstruction at Massachusetts General. The operation took more than six hours, followed by a two-day hospital stay.

Q: Why did you have the surgery at Mass General?

A: Well, I'd gone there initially just to find out about the DIEP procedure. But once I was there, it was just easier to stay with that surgeon. Ironically, I ended up having the TRAM flap, which I could have had at Cooley Dickinson with [plastic surgeon] Simone [Topal.] Everyone at Cooley Dick was great when I was there for chemo. It's a supportive atmosphere, it's convenient, and the care I got from [Dr.] Lindsey Rockwell, my oncologist, was the best.

Q: What were the surgery and post-op experience like?

A: It was really hard. I've given birth to three kids and this was incredibly difficult. I had four drains (for removal of fluid buildup), I felt weak, I couldn't stand up, and the thought of sneezing would send me into tears. I couldn't walk upright at all. On the other hand, I had the operation on Monday, went home on Wednesday. They told me they'd never had anyone bounce back that quickly.

Q: Was that because you were young and very fit and strong?

A: Yes, and I also think it was because I did meditation. I used it a ton in the hospital. I really felt it centered me and helped me focus on what was happening and it made me calm. The pain would be manageable or I wouldn't be so afraid. The fear would dissolve instead of me trying to hide it

Q: What was the recovery like?

A: At home, it was terrible! It was difficult to watch my house spiral into chaos and not have the energy to do anything about it. Then my mom rented a beach house and we went there. I would try to walk every other day if not every day. The kids were happy. I started biking again about six weeks after.

Q: Does your abdomen feel weaker now than it did before surgery?

A: It's a very odd feeling. I can't just sit up and get out of bed, I have to roll over and get up. If I'm slouching on the couch, I have to use my arms to get up. But I'm getting used to that. I'm not sure my stomach muscles will ever come back. I'm going to ask about that at my next appointment - What do I have to do to strengthen these other muscles and have them take over for what's not there anymore?

Q: The TRAM flap is often described as being like a tummy tuck. Did it really flatten your stomach?

A: Yes, and coming from someone who's had three kids, that's definitely a plus. I don't recommend doing it this way, but it's noticeably flatter.

Q: Does the reconstructed breast feel like a natural part of your body now?

A: Simone [Topal] had told me, if you go into this with unrealistic expectations, you'll be disappointed, and that's right. The breast isn't perfect, but I feel like I'm getting used to it. It's bigger, and it feels heavier and denser than my other one. It doesn't hurt and it's not sore, but it doesn't have much sensation, either. I have to say, I liked my old one better.

I went to see Judith Fine [at Gazebo in Northampton] because I knew she'd seen hundreds of reconstructions. She found a new bra for me to make the two sides more balanced and I also got an adhesive nipple there - I haven't decided yet about whether to have surgery for that. It's all about feeling like you "match."

Q: What's the next step?

A. I go back to see the doctors Oct. 22. I'll talk to them about what's involved in making the reconstructed breast a little smaller and adding a nipple. If it involves drains and another three nights in the hospital - no way!

Q: Any advice for other women?

A: I think to just be prepared that you have to do some soul-searching. It's about what you will be comfortable with. I definitely learned that it's better if you can get the information you need in little bits. I'm usually the kind of person who makes quick decisions, but with cancer you need to let things digest and think about it.

Q: What about the emotional part of the recovery? Now that it's been a year, do you feel it's behind you?

A: I remember thinking that it was going to be a really long year. And what's hit me now is that it was a really long year. I have room in my head again for other things. As cliche as it sounds, the grass is a little greener. I have the feeling of getting my feet on the ground.

When you're in it, people are always talking about being a survivor. When I was in the middle of it, the word felt uncomfortable. Now being on other side, realizing what that means and embracing it so wholeheartedly, and realizing I'm actually doing pretty well - that's an amazing feeling. When I ride my bike now, I want to have this neon sign on me that says, "Look at me! It's OK!"

I have this great T-shirt that some friends who rode in a bike race to raise money for breast cancer had made. It says "Carol's Crusaders" on the back, and on the front it says "After the Storm." And that's where I am now, in the calm after the storm.

Suzanne Wilson can be reached at swilson@gazettenet.com.