I NTRODUCCIÓN : LA REFORMA GREGORIANA COMO LUGAR DE LLEGADA

The use of the survivorship framework in Puerto Rico is complex, and clearly does not include the full range of meanings that are evident in these interviews. Thus, the following section details the additional, local meanings of post-cancer life that are not captured by the mainstream survivorship concept, in an attempt to construct a cultural model of life after cancer in Puerto Rico. It will touch upon such diverse topics as beliefs about causation, the impact of cancer in one’s personal and social lives, the role of family, friends, and partners, and the critical importance of faith and spirituality.

Causation

Participants’ beliefs about the cause or fundamental reason behind the development of their cancer fell along a spectrum ranging from externally-located to internally-located sources. A group of responses incorporated elements of both—for example, while there may have been an “external source,” a cancer’s development also depended upon the participants’ personal interaction with or reaction to that source.

External Sources

First, several participants believed that prior exposure to carcinogenic substances was the determining factor in their cancer, such as chemicals in food, pollution, or other environmental factors. Eva, a 44-year old teacher, diagnosed at age 39 with breast cancer, stated:

“Sometimes I think that something in the environment or the food [caused my cancer]. I read about the bras that have underwire, and I always used to use the ones with underwire. Always.”

Marisol, a 46-year old non-profit worker, diagnosed at 36 with breast cancer, opined:

“I think that everyone is a cancer survivor, [even if] you don’t have it. Seriously, think about everything that we are exposed to, everything that can cause cancer, that you eat, that you drink, that you are around, the electromagnetic fields, or the chlorine of the water, everything! We are all so exposed to things that can cause cancer that I think that everyone is a cancer survivor who is still alive!”

One woman had been in New York City during the 9/11 attack on the World Trade Center, and referenced rescue workers’ continuing health problems as an indication that a similar exposure may have been involved in her cancer. Daniela had lived for some time in Vieques, the small Puerto Rican island that was the site of decades-long bomb testing by the US Navy and has recently been in the news for its high cancer rate:

“I lived for a year in Vieques, and it was the practice bombsite for the Marines, and I lived over there. Sometimes I question myself if that had to do with the cancer, because I used to eat the food and drink the water over there. There is a really high incidence. I work with the patients over there […] So sometimes I’m like, damn, you know—I’ve been exposed! Can it be that? I don’t know! Because I don’t have history of cancer in my family.”

Internal Sources

More interesting from an anthropological standpoint was the large role that many participants ascribed to internal sources of cancer. The idea that internal emotional states, thoughts or trauma influenced the incidence and course of cancer in the individual’s life was prominent. Magdalena, diagnosed with breast cancer at age 45, linked depression to her own cancer and to those of several family members:

“When my father-in-law died, they gave a book to my ex-husband which said that the majority of cancers come when a person has a really severe depression. My father-in-law had a very deep depression and then two or three months later he had cancer, and then my [own] father. Then, I was the same, curiously, because I had just lost a nephew who was killed—he was mugged and killed in November, and I was diagnosed in May.”

Amanda, a 48-year old writer, tied her breast cancer to lifelong low self-esteem:

“I invested time thinking about this, and I can define cancer as a response from the body to all the things that we do to the body. So when my thoughts were ‘you don’t deserve, you cannot do that, you are not capable,’ the cells just responded to that command. It’s like an order. And the cancer is the response to the order of our thoughts.”

She went on to note:

“I recognize that in some way—deep, deep, very deep—I wanted to die, for so long in my life, that my cells just obeyed me. That was the input I was giving my body, because my self-esteem was so, so, so, so low, that I now recognize that I just wanted to die.”

Stress in particular was discussed as a master factor, a “detonator” that highly increased one’s risk of cancer. Often, participants could pinpoint single stressful incidents or

episodes that occurred immediately before their diagnosis, which they believed had directly contributed to their cancer’s development. This is reflected in comments made by Sofia, a 42-year old survivor of recurrent breast cancer:

“Sometimes people think that food and the environment [causes cancer], but I think that the trigger point is stress, or at least the sensation of helplessness in resolving a particular situation. I think that is significant. Not every person handles stress the same way. Maybe the same thing happens to you and you are the same. But there are people that drown in a glass of water, or see themselves without a solution. The sensation of seeing something without an exit […] When I was diagnosed the second time, for that reason I became determined to leave my husband.”

As implied by this quote, participants were often not the sole creator of stress in their lives; many of these causation stories centered on loved ones who had introduced the stress. For example, several participants mentioned the potential role of marital abuse, or even a poor marital relationship, in creating illness. This is exemplified in comments by Alejandra and Inez, divorced breast cancer survivors diagnosed in their 30s who identified marital discord as a potent stressor related to their cancers’ development:

“I think that stress was the detonator. You think that marriage is always great, but there were moments…[The stress of living together with my husband] could have caused [the cancer]. And not only him, because in my case, there had been abuse in my childhood. My parents’ divorce, physical abuse and verbal. Next I marry thinking that it was going to all get better and I fall into the same thing, although not as often but…14 years of

marriage and there were some 7 incidents and each time it was increasing.”

“I was going through a divorce situation of some infidelities. I think that my cells burned in that area. Later, as times passed, I took workshops, I went to support groups, I heard many things about research; there are relationships of when you go through a very, very strong suffering and your cells are burned, they are damaged in some area of your body.”

Alba, a 60-year old support group leader, hinted that the members with the worst prognoses were women who had been abused by their husbands:

“I have two that are really bad and both, when we do the [patient history] profile, they fit the profile. They are women subjected to constant abuse by their husbands; they do the workshops but they return to the abuse after the workshop is over.”

Priscilla, an advocate, felt that families should avoid voicing negative thoughts in front of the patient, as that can detrimentally impact the course of their illness:

“The cancer patient […] needs support from her family; the family will need to be strong and happy, so if she has that everything is going to be fine for her.”

In these stories, the effect of stress, depressive emotions and negative thoughts on cancer appeared to be mediated through the immune system; for example, sadness and depression suppressed the immune system, which then increased one’s vulnerability to cancer overall, as articulated by Camila, a 34-year old who was diagnosed with breast cancer shortly after giving birth to her first child:

“I don’t know if I was developing it as a teenager, because I was only 22 at the time, but I know now that if you hold back emotions or hold grudges or have different traumas in your life, they start building up as cancer cells, so that’s another theory that people say. For me, I’m sure it wasn't there before I gave birth to my son. I didn’t feel it […] I was severely depressed when I gave birth to my son—when you’re depressed, your immune system shuts down. So everything bad starts growing in your body. You start getting sick really often. My theory is that my cancer grew quicker because I was severely depressed, and my immune system wasn’t responding properly.”

A principal component of these arguments—and one with great implications for patient support and educational programs—is the need that several participants expressed for “owning” the cancer diagnosis and taking full responsibility for its occurrence. In what may seem like a paradox, these survivors argued that the acceptance of responsibility for their cancer allowed them to let go of their anger and bitterness, and to move forward positively with their lives. Amanda, quoted above, spoke about how she felt after coming to this realization:

“[I felt] responsible, responsible. Responsible, and committed to living in integrity with myself. That’s a very strong foundation to work through. So everything that happens to me, I have about a 90% of responsibility. So I’d rather go for me or quit.”

Interactions and Overlapping Causes

Often participants offered explanations that drew upon both external factors and internal responses. For example, several survivors spoke about poor nutrition and food choices as contributing to cancer, which references both the lack of availability of healthy, affordable food options on the island as well as their own difficulty giving up their ‘unhealthy’ diets. Cristina, an accountant and colon cancer survivor in her mid-30s,

identified the fast pace of life in Puerto Rico as a contributing cause, again speaking to both a structural reality (the fast pace of life) and the respondent’s own participation in it:

“Here in Puerto Rico there is a really big problem because people are eating non-stop; right now, I am going to eat because I am hungry, but there are people that are eating every day, breakfast, lunch, dinner, I mean the pace of life that we live is very fast, and this is really harmful. […] Eating out, and the speed of our lives, I know that this is why the incidence of cancer is so high here. Besides, in this environment, we don’t know what they are giving to us [in our food], because we don’t see it.”

Quite frequently, participants raised the role of family history and genetic traits in their cancers before negating this explanation. Even if one did not necessarily believe that this had a particular impact upon their own disease, it was noteworthy that the topic was raised even as it was simultaneously dismissed—indicating the visibility and significance of this explanatory model in both medical and popular knowledge.

“In my family, there isn’t a breast cancer history. I couldn’t say if it’s something genetic, but I don’t think so because I don’t have family with a breast cancer diagnosis. Perhaps it is…hmm, some cause apart from that, but really I cannot say” (Juanita, diagnosed at age 40 with breast and thyroid cancers).

Only three out of 23 survivors argued that a genetic predisposition played a role in the development of their disease, such as Francisco, diagnosed at age 23 with oral cancer:

“There is the genetic predisposition and I think that the majority of my doctors concur, since they did some labs in order to detect whatever HPV, whatever disease, whatever virus [it might be], and everything came out negative. I only chewed tobacco for maybe 2 months, no cigarettes; therefore, the chewing tobacco isn’t significant in the cancer. Alcohol was social, really sporadic; I didn’t use much alcohol, I [still] don’t; therefore, that wasn’t a significant cause either. Those are the most logical [reasons] that I know of and all the doctors think that it was the genetic predisposition, since my grandfather died of stomach cancer, my aunt died of breast cancer, and I have other family members that also suffered from cancer, so everyone thinks that it could have been genetic.”

Related to this idea about ‘transmission’ of cancer were several participants’ comments regarding their fear of passing cancer onto their offspring, or even in one case through blood transfusions:

“I believe that my family is destined for this and, yes, that makes me afraid. In this case having children and thinking that they might have the same thing, or suffer the same luck that I had of having had the same cancer as my mother, then yes, that makes me afraid” (Soledad, age 34, diagnosed four years prior with breast cancer).

“Right now I cannot give blood. Although the tests came out that I am really, really, really well and I am really positive, and my doctor is still positive, I have not wanted to donate blood thinking that [cells] can remain or [that it can activate them]…I would not have dared to have another child thinking that I can transmit the cancer to my child” (Eva, age 44, diagnosed five years prior with breast cancer).

Finally, six participants expressed confusion regarding the cause of their disease when queried, frequently raising various possibilities before admitting that they “don’t know.” This type of response is exemplified by Elena, a survivor of breast and thyroid cancers:

“I don’t know because there are so many factors and things that they say it can be a hard time, the air, the food, or whatever, that in reality, I don’t know.”

Cancer as a Catalyst for Change

Overwhelmingly, the impact of cancer on the participants’ lives was viewed positively; in the majority of accounts, cancer was credited with multiple benefits. At the very least, the personal change wrought from participants’ experience with cancer was seen as something good in the midst of evil. Thus, cancer was perceived within an overarching framework of “conflicting emotions,” as articulated by Maria, a three-time survivor: that is, it brings both good changes as well as difficult situations and pain.

Change in Perspective

Participants often viewed their experience with cancer as changing their “outlook on life.” They learned to appreciate life more, to value “the little things,” to realize what the important things in the life really are, and to “discover who one truly is”—the nature of life itself. Cancer was seen in some sense to open them up to this secret, and allow them to be able to better recognize and appreciate the truly important matters. Camila, a 34-year old breast cancer survivor, noted that cancer had been a blessing:

“I’ve met some spectacular women in my life because of breast cancer, so to me it’s kind of like a blessing. And people say, ‘what, are you freaking crazy?’ But breast cancer to me has been a blessing. After 12 years I can say that it’s a blessing; I didn’t say that before. It took about 6 years before I could actually see why it was a blessing. And it’s made me love the little details in life that we take for granted every day, a flower popping up, a little crab walking on the beach. Any little details that people go ‘aw, yeah,

time I see a butterfly, it’s amazing, because I have a chance to see it […] It’s made me become a better person and love life more.”

Luisa, a 22-year survivor of adolescent cancer, concurred:

“I seize the moment, take advantage of everything, because my life happens once and it is to live and enjoy. For me, I live, I enjoy, I have friendships, I tell everyone that I love you, it doesn’t matter—‘Look, I love you, I love you, you are not alone.’ For me that is living. I live but I live intensely, I don’t lose time.”

Current Priorities

Indeed, when queried about the three most important things in their life at the time the interview was conducted, participants’ priorities rested very clearly with a short list: family and children, their spouse or partner, God, helping others, their own health, and friends. Interestingly, only one participant answered that she was now one of the most important things in her life.

“[The three most important things in my life right now are] my relationship with God, my wife, and my son, in that same order” (Francisco, 28 years old, oral cancer survivor). “My son, my faith in God, and the support that my family has given me” (Rosa, 44 years old, breast cancer survivor).

Impact on Relationships

A prominent theme was cancer’s impact on clarifying relationships. Many participants had experienced improved relationships, or they were now better able to recognize people that brought positive qualities and experiences into their lives and to verbalize their love and appreciation. Conversely, they were also better able to identify those who brought negativity, and to be able to let those relationships go. Magdalena, a 52-year old analyst and 7-year breast cancer survivor, stated:

“It helps you in the sense of vision in life. Why? Because knowing that this is not permanent helps to have better relationships with your children, with people, with you, with your co-workers. My relationship with my co-workers has changed 200%. Because I always had problems, as it is a site of a lot of stress, and now, nothing. I love all my co- workers. But I was the one who changed, obviously.”

“Everything, everything [has changed since cancer]. It puts your life and priorities in some perspective. I think the more that I have changed is that I don't have time now to lose life with people, with situations, with money. It’s not that I have become somebody that uses