L AS REGLAS DE SAN A GUSTÍN , UN PROYECTO PARA UNA NUEVA FORMA DE VIDA

One way of beginning to understand what it means to have had cancer in Puerto Rico is to look at the influence of the survivorship concept on the island. As will be detailed below, the terms “survivor” and “survivorship” are widely used on the island by individuals, providers, and advocates, although the participants interpreted the terms in a variety of ways. Resistance to the concept because of its perceived inadequacy served to illuminate even more about the meanings of post-cancer life in Puerto Rico.

Survivorship and Survivor Identity

At the time of the research, several mainstream North American NGOs were operating chapters on the island—for example, the American Cancer Society and Susan G. Komen for the Cure, both prominent and influential cancer advocacy organizations in the US that utilize the survivorship concept as a way of framing life post-cancer. As elaborated in Chapter One, survivorship is a “framework used by many healthcare professionals, researchers, and cancer survivors to understand not only the physical but

also the social, psychological, and spiritual/existential impact of cancer on one’s life and for the remainder of one’s life” (Zebrack 2000:239). The term “survivor” has been directly translated by these organizations from English to Spanish as “sobreviviente,” which is derived from the verb sobrevivir, or “to survive.” “Survivorship” is translated directly to “sobrevivencia.”

It became immediately obvious at the beginning of the research that the terms

sobreviviente and sobrevivencia were problematic; participants displayed a range of

reactions to them. However, while the particularities of the actual words’ meanings and application to participants’ own lives varied, there were several consistent themes that emerged. The majority of survivors (n=16) had adopted the term survivor for

themselves, and self-identified with it with varying levels of dedication; the rest either explicitly rejected the term (n=5) or were not sure of their stance (n=1). There was inconsistency regarding the specific time period in which the participant started

vocalizing this identity: it ranged from immediately after diagnosis, to several years later after subsequent tests had come back clear. In response to a question about when the participants started to think of themselves as survivors, Cristina, a colon cancer survivor diagnosed at age 32, stated:

“I think that since the first day that they told me that I had cancer, [I considered myself a survivor]. I didn’t know what was going to happen, but inside I knew that no, that this was not going to kill me.”

Veronica—diagnosed at age 36 with breast and uterine cancer, responded similarly:

“[I felt like a survivor] immediately after the operation. As soon as they operated on me, I said ‘wow’ […] I said wow, I survived, I could have gotten worse.”

It was evident that for other participants, “being cured” of cancer, or having scans and tests that came out clean, was a necessary prerequisite for identifying as a survivor. For example, when asked when they began to consider themselves survivors, both

with breast and thyroid cancer, referenced the connection between survivorship and successful treatment:

“[I’ve called myself a survivor] personally since I finished my last chemo. I said: ‘okay, it didn’t kill me, neither the cancer nor the chemo.’ Because when you confront [the first chemo] then you are afraid of: ‘what will happen [with the second]? We survived one, let’s go to the next.’ […] There are people that consider themselves survivors since diagnosis but I personally considered myself a survivor when I finished my last chemo, and I said, ‘okay, this already happened, now I cannot say that I have cancer’ because they already told me in the last labs that there is no evidence of cancer, and when the doctor told me that there isn’t evidence of cancer, ‘you are cured,’ then I considered myself a survivor.” “I would say that from the point of – more or less – once I started the treatment and as time passed you do the checks and everything is fine. For example, I did it the tests two weeks ago and everything is fine, everything is perfect, everything is normal.”

The Meanings of Sobreviviente/Sobrevivencia in Puerto Rico

For those with a self-identity as a sobreviviente, the meanings of this term varied, but one theme did become dominant: that of literally being alive, and of not having died from the cancer or its treatment. Many participants explicitly tied the identity of survivor to its literal interpretation—that of living in a physical sense, or not having succumbed to the disease, as in the following two quotes:

“If one has already gone through the process and now one is [finishing], who has not come out badly, who has not had a recurrence or anything, then you are already a survivor because you are alive and you survived that process […] [A survivor is] a person that has had cancer, they have diagnosed him or her with it, they have taken it out, he or she has gotten their treatment and has not had recurrences in the cancer” (Andrea, diagnosed two years prior at age 26 with Stage I angiosarcoma).

“[I consider myself a survivor because I am here. Look at me. I survived the cancer. There are people that unfortunately do not have the same luck. I saw friends of mine [die] much younger than me” (Magdalena, diagnosed seven years prior at age 45 with Stage II breast cancer).

Others layered additional meanings on this interpretation. For some, survivorship meant that they could continue with their daily lives: Juanita, diagnosed at 40 with breast and thyroid cancers, noted that a cancer survivor “continues with his daily life, his routine,

works, does thing around the house—he is a survivor.” Pedro, diagnosed at 35 with

lymphoma, noted that cancer survivorship “is something normal. I have continued in my

face head on, and perseverance, as in the case of Veronica, diagnosed 24 years prior with breast cancer at age 36:

“The term cancer survivor for me, it has the meaning of a struggle, a battle. To accept it, to confront it, and to fight it. That is a survivor of cancer. And do not give up.”

The survivor identity also signified membership in a community of fellow survivors, and the bonding that occurred through shared experiences, understanding and pride at having lived through a grueling event. This is evident in Pedro’s comment, after he was diagnosed at age 35 with lymphoma:

“Here at [my workplace] we participated in the program Relay for Life. Although I worked there [before I was diagnosed], I never participated in the Relays for Life that they had. [Now] I have to go as a survivor, to put on the t-shirt that‘s different than what everyone else has. That first moment that I walked in, when we made the first round as a survivor, it made an impact. ‘Wow, I am a survivor’; I am walking with all these people, I come here to help, to support all these people and now I am one of that group. [It was] shocking.”

Soledad, a breast cancer survivor diagnosed at age 30 who is now active in the breast cancer community, responded similarly:

“I am a survivor because I went through it; I graduated with honors, and we are already on the other side helping other people, telling other people that yes, they can. Yes, of course—I am a survivor.”

“Surviving is Not the Same as Living”: Alternative Terminology and Meanings

On the other hand, the explicit rejection of the concept of sobreviviente, and the reasons given for this rejection, often served to be most interesting and illuminating for describing the ways in which participants negotiated life with and after cancer. Several participants noted the inadequacy of the term sobreviviente or its English equivalent. Three women noted that cancer was just “like a cold” or “like a flu,” speaking to the idea that cancer was just a bump in the road to get over and move past. Two others did not like the term because they thought that it kept reminding people of their experience with the disease. Daniela, age 33, diagnosed two years prior to the interview with Stage III breast cancer that recurred several months after finishing treatment, stated:

“There are people for whom it is very significant for them to say it. Like saying that word makes them feel that they conquered the disease. For me, I don't like the term. I think it excludes you. The point about living cancer is that you could return to normal life. That you would be normal. For me, always saying ‘I’m a cancer survivor; I’m a cancer survivor,’ is just reminding myself that I had it. I prefer to say I had, and that’s it.”

Amanda, age 48, diagnosed nine years ago with breast cancer, likened the use of the term survivor to “recycling” the illness:

“Cancer didn’t determine the life that I have now; it just helped me to watch and to reconsider how I was living. I don’t even go to the big activities of cancer survivors. No, no, no, I don’t like that. Because I don’t need self-pity […] What I see is that in some way, you just recycle the sickness, the illness. You just recycle. If you go to those activities, you recycle. I am not a cancer survivor—I HAD cancer. So cancer doesn’t define me.”

A vocal contingent of the survivor participants maintained that they do not like the term

sobreviviente, and do not apply it to their lives. They challenged what they saw as the

dominant connotation of the word sobreviviente—that it referenced mere survival, rather than a state of being more akin to thriving. At first, it seemed as if this critique

referenced the literal meaning of the translated term—which is partially the case. However, these respondents were also critiquing what appears to be the general

understanding of the post-cancer state in society, which is a social critique in addition to a linguistic critique. For example, 47-year old Inez, diagnosed with breast cancer nine years prior, explained her dislike of the term sobreviviente:

“Because it seems as if you were leaving a hole, struggling. We hate it. We do not like that they call us survivor, at least my group. We say ‘viviente’ or we say fighter, and we don’t like fighter either. It is because [it means that] you are still there in that struggle. [We use ‘viviente’] because we do not like that we are surviving, we do not want to survive. We want to live. We do not want to survive.”

Amanda, quoted above, related ‘survivor’ with victimhood:

“When I think about survivor, there’s a little bit of the victim there, and I resigned the victim mark, the victim name. I just overcame.”

These participants preferred the term viviente. Viviente, in contrast, speaks to the ability to thrive, and the participants’ desire to squeeze every last drop out of life, taking

advantage of opportunities, and valuing life and loved ones more than before. Francisco, a student diagnosed at age 23, with oral cancer, spoke about this:

“I conclude that the term ‘cancer survivor’ really isn’t the most appropriate but it is the only one that exists, and I will explain. Surviving is not the same as living; surviving implies that one goes beyond the situation but not fully. To live, when we talk about living, the joy of being human beings is living fully. To survive does not imply an abundance, it implies a limitation, because if you say to a person ‘you are a survivor’—survivor of what? Now automatically you are reaching the conclusion that there is a limitation. They tell you that you live and you say, ‘yes, I live, I live well, I am alive, I don’t have a disease, I am in good health.’ You say to an old person, ‘do you live?’ and they say, ‘I am here surviving because the diabetes is killing me, this is killing me.’ Now that implies a limitation. Cancer isn’t an absolute limitation; it is a wall, but like all walls it can be knocked down. [I do not consider myself a survivor]. I consider myself a ‘viviente in abundance’. Because cancer is like whatever other type of disease, like whatever type of emotional problem that is overcome; therefore, it is not an absolute limitation—it’s a situation, it’s not a problem.”

Camila, diagnosed at age 22 with breast cancer shortly after her first baby was born, referenced similar ideas to Francisco’s:

“[The word] ‘sobreviviente’ actually gets me kinda angry because I’m not surviving, I am living. If you’re living, you say ‘I’m living; soy viva.’ You use the same term ‘sobreviviente’; you just add the front part. To me, surviving is that you’re just dragging your life, you’re just dragging it, and you’re just surviving it because there’s no option. But when you live, you say ‘yo soy una viviente de cancer.’ I’m not a survivor—I say ‘viviente’ because I live every day. I get up, I have my children with me, I have work, I have my family, I have a house, I have a home, and I live every day. I don’t survive. Because when you’re on a survival mode, you’re trying to make it. And I don’t try to make it, I already am. I’m just making things work for me. So I get a little bit angry hearing someone say, ‘Oh, you’re a cancer survivor!’ In English, it sounds better. It doesn’t make me as upset as when I say it in Spanish […] I don’t survive. I am living life. I don’t drag my life with me. I enjoy it.” The Role of Organizations

It is important to note here the critical role of organizations in fostering the use of these terms. On the one hand, mainstream North American organizations utilize the directly translated terms, sobreviviente/sobrevivencia, and the advocates who worked for these organizations used the same definitions. Those definitions generally had to do with the time period at which one should start identifying as a survivor—without exception, from Day One. This was a point on which the organizations tried to build awareness, that everyone diagnosed with cancer was a survivor, regardless of stage,

treatment type, or life expectancy. This is exemplified in comments by two advocates, Angela and Esteban, who both work in mainstream organizations:

“[This organization] defines survivor as every person that has a diagnosis of cancer from day one. You are a survivor starting the first day you got the diagnosis. So, somebody told you, you got cancer, you are a survivor already. In Puerto Rico, yes, they refer to themselves as survivors, and our organization has had much to do with this. The education that [we] offer has taught people about the concept of survivor. Before that, people talked about patients. Now they talk about survivorship. And now they understand how ‘survivorship’ is different than ‘patient’. The patient is there in the moment; there isn’t anything else. A survivor has already passed through a process, has already learned, has already won, have fought, you win, and now you go forward.”

“We’re trying to make sure that people understand that, even while you’re battling with cancer, you are a survivor. Because when we started talking about cancer survivors, the idea was that after 5 years, which is the well-known time that a doctor says that you can be sure that you’re cancer-free, then you become a cancer survivor. And now we are battling to make sure that people understand that 2 days after you’ve been told that you have cancer, then you become a survivor. Because you are there, and you are fighting.”

It was possible to see how these organizations shaped participants’ views on the issue. Alejandra, a 46-year old accountant diagnosed 15 years prior with breast cancer, noted that she used to see cancer as “like a cold” until she gradually came to realize that it was a test, and that she was a fighter—and thus, a survivor. Her realization came directly from her volunteer work at the ACS and her exposure to their definition of survivorship.

“[I began to consider myself a survivor when I started to participate in the workshops and get wrapped up in and involved more in the American Cancer Society. Several years had already passed since my diagnosis—I would say maybe four or five years. I had not internalized in its totality that every patient is a cancer survivor. I was like, ‘what I [went] through was a cold and that’s it.’ In my mind, it was a cold all the time, where there was a treatment to follow and some things that were damaged and I had to eliminate it.”

Sra. Benitez, a healthcare provider and support group leader, pointed out her members’ tendency to be very public about their survivorship identity:

“Oh yes [they identify themselves as survivors]. They are very happy with that, and wherever they go, they have their pink stuff, their pink ribbons […] Wherever we go, we have our identification, and they are very, very proud. Some of them believe what they have read, that survivorship means 5 years after they’ve finished. So one day they went up to the doctor and said, ‘hey doctor, when are we considered survivors?’ And he said, ‘since the first time you came here.’ So for them, at least for my group, they are survivors the first time they come into the office, because they begin to survive whatever they have to survive up till now.”

The leaders of local organizations held varying definitions of survivorship. For example, Concha, a 65-year old leader of a fundraising organization who had been treated herself for breast cancer, noted that:

“Survivor for me is a person that has gone through cancer, have gotten all the treatments, and has achieved being in remission, without any cancer in their body for many years.”