Kristine M. Conner
University of Pennsylvania Cancer Center
Ultima Vez Modificado: 1 de noviembre del 2001
On August 21st and 22nd, about 60 American and 400 Japanese women and men made the arduous climb to the summit of Mt. Fujiyama in Japan to promote awareness about breast cancer, raise funds for research, and inspire hope in people who are (or will be) affected by this disease. Mt. Fuji was the third major "Climb Against the Odds" organized by the San Francisco-based Breast Cancer Fund, a nonprofit organization founded in 1992 to accelerate breast cancer research while also promoting awareness.
In early 1995, The Fund organized 17 breast cancer survivors for a summit attempt on Argentina's Aconcagua (23,000 feet), the highest peak outside of the Himalayas. Over three years later, in June 1998, five breast cancer survivors teamed up with seven young women determined to beat the odds of breast cancer to climb Alaska's Mt. McKinley (20,300 feet). A full-length film of the McKinley journey is being broadcast this fall on public television in the U.S. and abroad.
The group for Mt. Fuji 2000 was the largest to date. In addition to breast cancer survivors, whose ages ranged from the late 20s to late 60s, the group included friends and family members of women affected by the disease, physicians and health care professionals, and other concerned individuals. These 60 climbers were accompanied by 27 other Americans who went along to offer their support.
For Linda Rinaldi of Palmyra, New Jersey, reaching the summit of Mt. Fuji was a life-changing experience -- as was her diagnosis with stage II breast cancer 28 months ago, in the spring of 1998, thanks to a routine mammogram. Already juggling a full schedule at work (she is a busy attorney with the New Jersey Division of Criminal Justice) and home (as a wife and mother of two young sons), Rinaldi was forced to find a way to incorporate breast cancer into her life as well. Her answer came through The Breast Cancer Fund.
A few months after finishing treatment in early 1999, Rinaldi saw an ad in MAMM magazine for The Fund's "Hike for Healing" event in the Wind River Range in Wyoming. While she had never really hiked or backpacked, and had camped "maybe once or twice twenty years ago," the thought of getting away from it all in the wilderness appealed to her. She says she was feeling lost, out of sorts, and unsure about what would come next. The Hike reinvigorated her, not only because of the physical challenges, but because of her sense of connection with the other breast cancer survivors who were climbing -- and the fact that, as she puts it, she was "getting the metaphors" of mountain climbing and breast cancer. Rinaldi lamented to the other participants that The Breast Cancer Fund did not have an East coast presence. And while she knew that the Mt. Fuji climb had been planned, she says it never crossed her mind that she could participate.
But then she got a call from Andrea Martin, founder and director of The Fund, inviting her to be part of the team. She says she objected at first: "I work! I have kids!" Martin's reply? "We all work. We all have kids." Martin mailed Rinaldi a packet of information that she found "irresistible." Thus began the intense process of preparing for the climb -- she trained four days per week at 5:30 in the morning -- and raising $5,000 to cover her expenses. To date, she has raised about $15,000 through her own efforts at her workplace, at her gym, and at community events.
Just three weeks after she summited, Rinaldi spoke with OncoLink about the climb itself, the parallels she noticed between climbing and the challenge of dealing with cancer, and the motivation she feels to keep talking about her experiences with breast cancer.
I'd like to start at the culmination of your climb and work backwards. Can you recreate for me the moment at which you reached the top of Mt. Fuji? What were you seeing, what were you thinking, what were you feeling?
When I summited, it was a little bit after eight in the morning, and I was fourth from the end. It was a completely emotionally overwhelming experience. First of all, there were a lot of people there from the American team to greet me. There were these Japanese gates -- I think they're called toriis -- right at the summit, so in order to officially summit you go through the gate. And there were Japanese climbers holding American flags and Japanese flags on either side of the gate. I was so physically exhausted and so emotionally overcome that all I could really do was cry! The woman who summited with me raised my hand and said, "Celebrate!" but I just couldn't believe I had done it! Doing anything else would have been unacceptable for me, but still I couldn't believe I was really there.
There was somebody up there playing an accordion, so there was music, there were press and photographers and a camera crew, and there were bells ringing in the wind. One of the traditions of climbing Mt. Fuji is that you get a climbing stick that you can have stamped at every station to prove that you were there. On this stick are bells and so when you get up to the summit, you take the bells and say a prayer and then leave them there on a kind of shrine. So there are just bells everywhere.
The sun was out, it was a beautiful day . . . it's really hard to explain how everyone was feeling in words, except to say that everyone was elated at that particular moment -- elated, exhausted, and in awe. We were completely above the clouds, you couldn't see anything below -- none of the towns or villages. The Japanese climbers kept telling us that you can very rarely see the summit or see off the summit because it is usually engulfed in clouds. For us, it was like the clouds had just parted. It was perfectly clear, the sky was as blue as could be, and you couldn't see below the clouds but you could see the cloud formations all around us. It was just unbelievable, really, really awesome.
Are there any other visual impressions that stand out as you look back on the actual climb?
The Japanese team had on these very colorful jackets. They were all yellow, and hot pink, and blue, and lime green. The Breast Cancer Fund also has a prayer flag tribute program so we all carried prayer flags up the mountain. They are to honor or remember people who have faced breast cancer. From my vantage point, because I was often so far behind the group -- and especially the Japanese, who climb quickly -- I could see this steady stream of brightly colored jackets that were so reminiscent to me of the prayer flags. It was like watching a stream of prayer flags go up the mountain. It was really very beautiful and it really grounded me in the reality of why I was there. It was one thing to summit and hear the cheering and hear the accordion, but we were there for a much more serious purpose.
For me it was a personal journey and a triumph over some of the side effects of chemotherapy, one of which was depression and another big one was not being able to walk for a couple days. One of the side effects of Taxol is bone and joint pain, and with my first Taxol treatment, the pain was excruciating. It really manifested itself in the balls of my feet, and my ankles and my knees. I couldn't put any weight on my feet at all for about four days. And that was exactly two years to the week -- August 20th to 24th, 1998 -- and it was August 22nd, 2000, that I was climbing Mt. Fuji. So for me it was a real personal triumph over that particular side effect.
But to see those jackets reminding me of those prayer flags . . . again, it grounded me in the serious purpose of why we were there, which was to fight breast cancer, not only for myself, but for those people who can't -- who don't have a voice anymore, those who have lost the battle. And for those who haven't started battling yet . . . the hundred of thousands who are going to in the near future.
People look at me and say, "I can't believe you did that. No matter what I faced, I wouldn't climb a mountain." And to me it's just a natural progression of how I have to continue to fight.
You mentioned that you experienced depression after treatment, and I noticed that you emphasized this in some of the other newspaper articles written about you. Can you talk a little more about that and why you feel the need to speak up about it?
I finished treatment in January 1999. And the further I got away from treatment the worse I was feeling, physically and emotionally. I had this overwhelming desire to be by myself -- this was around March, April. I just was barely functioning at home and work. I just wanted to be alone, I cried all the time, I was so fatigued, I didn't know what was wrong with me. I had worked all during chemotherapy and radiation, I took care of my kids, I shopped, I cooked. And here it was over, and I would get up in the morning and take a shower for work, and then need a nap. I would drive from Palmyra to Trenton and be completely exhausted by the time I got there. I had no idea what was wrong with me. I was thinking, "It's over, move on." But I had no idea what was happening and finally I started feeling sorry for myself.
When I saw the ad in MAMM magazine about The Breast Cancer Fund's Hike for Healing in Wyoming, all I could think about was being in the wilderness by myself. Truthfully, I was going to be with a group of other breast cancer survivors, and a couple of guides, but in terms of my reality, I just felt like I needed to be alone, to run away. And what better place to run away to? . . .
Emotional recovery is something I want to focus on more. There's little to nothing written about it. [Rinaldi's physician eventually prescribed medication for her depression, which helped to jumpstart her recovery.]
So the Hike for Healing acquainted you with The Breast Cancer Fund. What did you think as you learned more about the organization? And did you begin to see the connections between mountain climbing and surviving breast cancer?
I got a copy of the Climb Against the Odds videotape, which was about the five breast cancer survivors who climbed Mt. McKinley. And that really hit close to home for me. When those women were climbing Mt. McKinley in 1998, I was losing my hair, I was going through my first and second chemo treatments. I really had the sense that the women were there for me, fighting for me. And they became our guides for the Mt. Fuji trip.
When I was in chemotherapy, if anyone had told me I would have been climbing mountains in two years, I would have told them they were crazy. Because that was the furthest thing from my mind. But for me it's been a way to bring myself closer to emotional healing as well as physical healing. I trained very hard to climb Mt. Fuji. I was at the gym at 5:30 in the morning four days a week, and that's not something I think I would have done "just because." But I had a goal.
I tend to be a long-range planner. I am very organized, I plan my life, the nature of my job is to be organized and to plan far ahead. I tend to look at the big picture. I found with breast cancer that you can't be a long-range planner. You can't take the whole experience all at once, because it's too overwhelming, too self-defeating. When they told me I had six months of chemotherapy to face, I fell apart. The only way I was able to handle it, accept it, and get past it was to take one treatment at a time. I literally wore blinders, living my life just three weeks at a time. And I would break time down even further. I would have chemo on Thursday, so it was like, "Just get through this weekend first." And then I would gradually start to feel better on Monday, Tuesday, then Wednesday -- I had to get through those days first. I would look forward to the next weekend, the following week, and the third weekend, when I would try to do some kind of activity with my kids. But I wouldn't start looking to the next treatment until that week came, because it was just too much to know that I would have these chemicals pumped into me again and have to go through the cycle again . . . When you look at it one day at a time, it becomes more manageable.
It was the same thing with climbing Mt. Fuji. When you stand looking at the summit, it looks like it's close, because it's right there in front of you, but you know in reality it's far away -- hours and hours away. And you can't just stand there and look up and say, "I want to be there." You have to focus on one step at a time, one foot in front of the other, one breath after the other, hydrate, concentrate. That way it makes the overwhelming more manageable; it gives it to you in smaller pieces.
There are stations on Mt. Fuji, and above the eighth station, it gets very steep and there are a lot of volcanic rocks. Because of the terrain, it would be too difficult to walk straight up. So there are switchbacks, and all you had to do was think about getting to the next one and then taking a break. It doesn't matter that there are 35 more in front of you. It makes the climb a little longer, but it makes it more doable.
Did you encounter any unexpected challenges or setbacks during the climb, and if so, what were they and how did they impact your overall experience?
Well, I encountered what I thought was a setback, but it actually turned out be to a gift -- which actually is sort of what cancer has turned out to be for me. It had been our goal to make it to the eighth station by the end of the first day. The Japanese team had told our guide that wherever we were at 4:30 in the afternoon was where we had to stay. It gets dark at about 6:30, and the people who run the huts serve dinner and have to prepare for the night. At 4:20, I was at the seventh station. My legs were killing me, and I knew there was no way I would make it to the eighth station, which was at least an hour-and-a-half away . . .
The guides asked me to stay at the seventh station, and I was really upset. I was afraid I wasn't going to summit, that I had fallen so far behind . . . you know, here I was at least an hour-and-a-half behind where I was supposed to be. I wanted to be with my team. I didn't know who would be with me at the seventh station. But then a woman who worked at The Breast Cancer Fund appeared and said she was going to stay. I felt better that someone else was in my situation. But then as it turned out, there were many people a lot lower than I was, and I was settled in the hut when they came up. There were about eight of us Americans at the station for the night.
So we left the next morning at 3:20, and we were at the eighth station by 4:30. So we actually had done better than we had anticipated, because we did in an hour and ten minutes what should have taken at least an hour and thirty minutes. So for me, that was really a triumph, because I realized my anxiety was for nothing. I had allowed myself time to acclimate myself to the altitude, and give my legs a rest, and I actually did the hardest part of the climb more quickly than the lower parts. I didn't realize that it was the hardest part of the climb until I was on the way down, when we got back to the eighth station after we had summited. We stopped to rest and the guides were saying, "Come on, we have to get going, this is the hardest part of the climb," meaning between the seventh and eighth stations. That was surprising to me because it was the easiest part of the climb for me coming up! I couldn't believe how treacherous it was -- there were steep inclines, crevices, and a rope for support. Well, my group hadn't seen how difficult it was on the way up; it was dark! So I guess there is some truth to the old adage, "Ignorance is bliss!" We didn't know what we were actually facing, but we were rested, our minds were rested, our legs were rested, our bodies were rested. So in the end, it worked out really well . . . I think if I had pushed myself to get up to the eight station that day, I would have experienced altitude sickness like a lot of the other climbers did.
So, what I thought be a setback really turned out to be a gift. You have to listen to your body, you can't ignore it. Life is too fragile . . . you can't take chances. And there are a lot of metaphors even in that. You can't ignore your health, you can't say, "I'm not going to get a mammogram, breast cancer only happens to other people." You can't feel a lump and say, "Oh, we don't have breast cancer in our family, it's probably nothing, I'll just wait until my gynecology appointment next year." You can't take chances with your health because you only get one shot at it.
As you look back, do you see other "metaphors" that connect your experiences as a patient with those you had as a climber?
Yes, and I think they're going to be coming to me for a very long time.
The Japanese team members were at each station, cheering us on, knowing that we were kind of struggling. You could hear them even when you were about 20 minutes away from the station. As you got up closer, you could see that they were waving flags, they had water for you, and ice-cold water balloons that they would put on your neck and your forehead. They would have a seat cleared for you so you could sit down.
There were times I wanted to give up, even though I could hear them cheering for me. I knew that it was still at least 20 minutes away. And that would remind me of being so close to the finish of chemotherapy, like when I got up to treatments 6 and 7, I didn't want it anymore. I didn't want to feel so sick. But I could see the end, and you know that the only way to get to the end is to continue. You have to continue, you can't give up. No matter how close the summit seemed, or no matter how close the next station seemed, you couldn't just sit down. You just had to keep steady progress and concentrate on your steps -- just like when I got up to chemo number 6 and chemo number 7.
You know, it was kind of ironic, actually. I didn't want any more chemo, but I started to get nervous when it was almost over. My largest fighting tool was in a sense going to be taken away from me, and I had to go on to the next thing, which was radiation. As much as I didn't want anymore, I didn't want to stop.
It was the same thing getting to those stations on Mt. Fuji, and getting to the summit. Getting closer to the summit was the ultimate. I had about six more switchbacks to go, and it was really, really steep. I could actually see the people at the summit. I could see them around the bend, but I knew it was going to be so God-awful to get there . . . In both cases, I knew that it was going to take every ounce of energy and concentration I had to get there.
When I did get there, it was overwhelming. On the summit, I just broke down; I had an intense emotional moment. I did the same thing at the end of chemo. I was just so relieved that it was over -- and scared at the same time. I wasn't so much scared when I got to the summit -- except now that I am home, I have this sense of "What's next?" It's kind of reminiscent of ending chemo and then starting radiation; I was wondering, "What's the next challenge going to be?"
But this is a good "What's next?" because I have to think about what mountain I am going to take on next. I'm not done climbing. I feel that as long as women are developing breast cancer at the rate they are developing it, I still have to climb mountains, and raise funds and awareness. I still want to let women know that you can live with breast cancer. You can live a quality productive life as long as you are informed, and listen, and take charge of your health . . . Yes, chemotherapy is awful, and radiation is intense, but it can work as long as breast cancer is detected early.
In a way for me, cancer has been a gift. I thought that was ludicrous when I started treatment and I would read articles with women saying it was a gift and that they wouldn't go back. I thought they had lost their minds for sure. But 28 months after being diagnosed, I can say that breast cancer was a gift. And if you can get through to the other side with early detection and positive prognosis, I think it is a gift. You appreciate life, you appreciate every single day, you appreciate your family and friends, you know the true meaning of support and friendship. And there's nothing wrong with letting people help you. I had to give in an let people help me. Now I come out in the morning and look at leaves on the trees and say, "Look at that green," or I marvel at the color of flowers, and people look at me like I'm crazy! You just have a finer appreciation for everything around you.
Except for the fact that breast cancer threatens my very existence as a person on this earth, I wouldn't change it for the world, I really wouldn't! It has been something of a gift. I have met amazing people -- not only through the Breast Cancer Fund, but a whole group of professionals. It was like they were hand-picked to be oncology nurses and radiology technicians.
Talking is the only way to educate people. I have found a new voice, a new strength in myself. I am learning new things about myself every day. It started out as what I called my living nightmare, and it has turned into my cancer gift.
What kinds of insights do you think the group gained from interacting with people of another country and culture who are also dealing with the challenge of breast cancer?
There were a lot of Japanese breast cancer survivors and patients climbing with us, and apparently the ripple effect is still happening there. I would say that Japanese women are probably a decade behind where we are in terms of talking about health issues. You know, there haven't been support groups available for them. In fact, there was a time not too long ago that the patient would not even be told about the diagnosis. So they were just so grateful to meet us, to hear that we were productive members of our society talking about breast cancer and being in the news media -- coming out of the closet, so to speak. We knew what was going on with our diagnosis, we had a say in our treatment plan. They were just in awe of that.
I think you could say that they women who participated were on the cutting edge of activism in Japanese culture as far as talking goes. They aren't completely embraced by people in that society, but certainly they are embraced by the women there. Their questions really reflected the need for so many answers. They had so many of the same questions we do: How do we make sure we get our annual mammograms? How do we know our mammograms are being read correctly? What is lymphedema, have you heard of this? My arm has swelled up, and what's causing it, how do I make it better? and so on.
The issues are the same, but they are just at the beginning of being able to speak out and get the answers they need. So they were just so delighted we were there. We got a lot of coverage by the Japanese press -- media, newspapers, television. One climber was on a Japanese talk show. To have the climb publicized was such a breakthrough for them. It can only get better, because they have got quite a lot of women who are committed to speaking out, and now they have their American sisters who will help them speak out. They know we have not only been there, but we will continue to be in partnership with them . . .
In fact, there was a study done by Japanese researchers that was recently reported on ReutersHealth, which found that providing information and support to Japanese women with breast cancer does appear to help them cope with their illness. So this is all new to them.
You said that there are more mountains left for you to climb. Do you have a plan for what comes next?
In terms of a "big mountain," I am not sure which one it will be. But I do have a plan for "next" -- it's just a little less arduous and something I would like to get family and community involved in. I'm organizing a "Peak Hike" in New Jersey for October 2001. In between its major expeditions, The Breast Cancer Fund does peak hikes -- they're day hikes . . . there's an annual one in California, there was one in Crested Butte, Colorado, when we were in Japan, there have been two on in New Hampshire on Mount Washington . . .
Last fall, I told Andrea Martin I thought we needed to have a peak hike in New Jersey. We have a high incidence of cancer and breast cancer here, and on the East coast we have a huge market to draw from: New Jersey, New York, Philadelphia, Delaware. And there are a lot of people I know who will appreciate the metaphors of climbing and breast cancer . . .
We don't have a Mt. Fuji or a Mt. Washington, but we have High Point. It's not really high, but it's not the destination that counts, it's the journey. And it's a journey that can involve families and young children, because it's not really an arduous climb. You can have older people, people in treatment -- the overall goal is to raise awareness and come together in the community to provide support and inspiration . . .
October is Breast Cancer Awareness Month, which is always a good time to do something, and it's also a beautiful time of the year and to appreciate the leaves and the change. And this will highlight the change that cancer brings into our lives as well.
Again, I've learned that I need to have short-term goals. A year is a little bit away, but it's a more achievable goal than thinking about where I'm going to be in five or ten years. That's still too overwhelming a thought for me. If I break life down into small chunks, I'm not stressed, I'm not overwhelmed.
The Breast Cancer Fund's next major expedition is Mt. Kilimanjaro 2002. I hope I might be invited to be on the team . . . much to the chagrin of my family!
And what about your figurative "climbing" as a survivor? What are your thoughts on that?
Well, it doesn't really give me a lot of comfort to know that 60 percent of all women diagnosed with breast cancer are alive in five years. What if I am not in that 60 percent? You know, 40 percent is also a very large number, and I could just as easily be there. So for me to sit back and not continue to fight is just not acceptable. As I said, I don't find much comfort in the numbers when I don't know on what side of the numbers I am going to fall. And I don't want my daughters-in-law and granddaughters to face the same kind of odds.
It's never going to be over; it will always be a part of who I am. But the key is, what are you going to do with it? Are you going to make it a positive thing or let it hold you back?
Feb 9, 2010 - Well below 1 percent of American women without a personal history of breast cancer have been taking tamoxifen to prevent breast cancer in the past decade, according to a report in the February issue of Cancer Epidemiology, Biomarkers & Prevention.