Themes and Repeating Ideas

Two Catalysts to Diagnosis. Two types of events typically preceded the cancer diagnosis for participants in this study. Some of the patients described sustaining a serious physical injury or accident in the time before getting diagnosed (2/6). In this scenario, the diagnosis of myeloma was made coincidently, a result of workup done to assess the extent of injury caused by their accident. As one patient describes it, “I had a major bicycle accident where I broke all kinds of bones … I had all these X-rays taken to see if I had broken anything and he noticed what he called a lesion.”

The other patients (4/6) described feeling unwell or in pain for a long time prior to learning they had myeloma. They described making several requests to their doctors to find out the source of their symptoms and to finally receive a proper diagnosis. Patients expressed frustration about the need to convince physicians that something serious was being missed. Most patients estimated that it took months for a myeloma diagnosis to be made. As one participant expressed it: “They were sending me for pain management and I was needling the neurologist doing it saying, ‘You guys are giving me pain modification and don't even know what is causing the pain!’ So that was enough to inspire him to say, ‘You have had everything but let's try a CT scan because you haven't had that.’” Another participant recalled: “I had a pain in my hip and I went to my primary doctor and she examined me and said she didn't see anything. I took X-rays of my hip and what have you. She asked me if I had fallen, if I had hit myself there or anything…. X-rays didn't show anything. So she said it might be arthritis, which they blame everything on these days. She gave me something for that but the pain persisted and so I went back to her, and I told her no, there must be something else because this pain is not going away. So she said ‘OK’ she would give me a complete workup and when she did that, she saw that my protein was high and she referred me to an oncologist…. I went to the oncologist and that's when she took a bone marrow and confirmed that I had multiple myeloma…. was a couple of months.”

Shock. Nearly all of the participants described feeling shocked after getting the news of having multiple myeloma (5/6). None of the participants expected a cancer diagnosis. As one patient describes it: “All of a sudden I had the rug pulled out from under me, … everything was out of control for me.” Another gentleman described his shock as: “It was horrible. I mean I was stunned. I was always a very healthy guy, I was kind of athletic, and by the time I went to this oncologist fellow, I was really very sick.” A salient aspect of the shock with diagnosis involves the sudden shift in a personal identity from “healthy and active” to one who is fatally ill.

Most participants agreed that they had never heard of multiple myeloma prior to getting sick (4/6). This made it especially difficult to register the news of diagnosis initially. As one woman explained, “They told me that I had to go to a hematologist. They told me multiple myeloma; I had never heard of it—I kept calling it melanoma … and when I walked in, I saw the sign on the building, ‘Hematology-Oncology,’ I lost it.”

Looking death in the face. In the immediate time following diagnosis, patients have a strong sense that death is imminent (6/6). One of the women said: “It went from a state of shock, then I thought, as they say, ‘put your business in order’ because you know, I don't know, I didn't know whether I was going to be around the next year or what.” Another woman related the following experience: “I decided I like reading the New Yorker—the magazine. So I said ‘You know I think I will get a subscription.’ And when I called to get a subscription, they said to me ‘Do you want one or two years?’ And I thought, ‘How can I get a subscription for two years? I probably won't even be here in two years.”

As suggested by these narratives, at the time of diagnosis patients have an expectation that they are not going to live much longer. In one man's words, “That weekend was probably the hardest because everyone was searching it on the Internet for us and when you read this stuff on the Internet, you are dead meat. I mean it's very hard to interpret that optimistically. So that weekend and the stay in the hospital I thought I was in a lot of trouble.” For some patients, the belief that death is imminent contributed to a “what's the point?” attitude regarding tending to mundane matters. One woman reported: “I mean it took me, I don't know how long it took me to be able to go out and buy something for myself…. Finally I forced myself to go shopping and get stuff, but it took me forever. I mean I still can't. My jacket is falling apart, its filthy, its falling apart…. What's the point, what a waste of money.” One gentleman shared another experience: “I have, let's say, some kind of little mole on my face, I didn't take care of it because I really didn't think I had any long-term prognosis that it should make a difference.” Another woman reported: “When I discovered I had this, I sort of let everything … go to pot.”

Deciding on a plan of action. Nearly all patients insisted on being treated by a leading specialist in the field of multiple myeloma (5/6). Referrals typically came from the Multiple Myeloma Research Foundation or from the diagnosing physician. One participant recalled the following: “I went to this oncologist and she started treating me for the myeloma but … she wasn't really a specialist in the field of myeloma—just an oncologist—and I wasn't comfortable with her.” This sentiment was typically expressed across the narratives.

A notable gender difference emerged from the narratives when it came to learning about multiple myeloma and available treatments. Females were generally more involved in gathering information than were the males. This was true not only of the female participants, but also of the spouses of the male patients. The women were highly motivated to research multiple myeloma from various sources of literature and the Internet prior to engaging in treatment. As one of the women mentions, “The very first thing is I walked into the doctor's office and right down the hall from the doctor's office there was a medical library there and they had brochures…. I did go to the research foundation Web site and I looked there and read about it…. I wanted to be as informed as possible and I wanted to make sure when I was getting medication that I read about that so that I could converse…. I felt in some sense that gave me some sense of control.”

Male participants were less invested in learning about multiple myeloma. Reactions ranged from deliberately avoiding information to expressing the temptation not to gather information due to how discouraging it made the prognosis feel. The third gentleman did not explicitly state an opposition to being informed, but his general lack of awareness about details of his own disease and treatment suggested a tendency to avoid information, rather than gather it. As one male participant states: “I wasn't interested in anything that they were going to do to me. Whatever they were going to do was fine with me and I didn't want to know anything about it. I just wanted to get on with the process…. I remained ignorant until the end.” Another gentleman recapped his experience before treatment as, “She went on the Internet and searched it, about multiple myeloma … and came up with the top specialists in that disease and Dr. X's name came up as one of the top there in the world. [His wife] spoke to [Transplant Coordinator at hospital] and literally begged her because there was a waiting list for Dr. X. So that's how we got here.” Men typically jumped into the recommended treatment without asking many questions beforehand: “There are some people who don't even want to do the stem cell transplant. I didn't know to turn it down, I just marched forward with whatever was the most aggressive treatment that would give me the best odds.”

Themes and Repeating Ideas

Reaction to transplant. Participants varied in their experiences of the stem cell transplant. One-third of patients had transplants that went easily and without complications. Their stays in the hospital were relatively brief and each described feeling fortunate when compared to other patients: “I had a stem cell transplant and I was in the hospital maybe 14 days, 12 days or something…. Everything went very smoothly. I was fortunate.” Another third of patients felt that, although the transplant was a difficult treatment to endure, it was easier than what they had been expecting: “The transplant was the only treatment that I have had that was really hard. But it wasn't really that hard for me…. I was expecting it to be horrible!” In the remaining cases, the gentlemen described having a difficult time with the transplant. Each described particularly long hospitalizations and having physically challenging times tolerating the treatment: “I was in the hospital for 50 days or something like that. I don't remember exactly, but it was way more than I was supposed to be in there because I think I developed infections and something like that…. I was just very weak and it took me months to recover from the stem cell transplant.” Generally speaking, when the transplant was physically more difficult to endure, the emotional suffering was greater.

Physical immobilization. The physical toll of the transplant was tremendous for patients. All participants emphasized the experience of fatigue and weakness and conveyed an absolute loss of energy to mobilize (6/6). The relationship between the vulnerable body and the quality of suffering was evident throughout the narratives. As one patient describes it: “Only twice did I cry and that was because I was so exhausted…. People don't know what tired is until they have been a cancer patient…. When I returned from the stem cell transplant … I was at that rock-bottom tired feeling.” Another woman recalled, “The hardest part of the transplant was when I went through the transplant … when I was just feeling out of it … when all of your strength is just taken out of you…. I just kind of wanted to lay there.”

All participants who were in relationships (3/6) described a period of complete sexual abstinence in the months following transplant. Some attributions were made to the medication's effect on libido, but most patients agreed that it was impossible to emotionally experience arousal and desire while their bodies felt so weakened: “Sex was out for a while. I mean I wasn't even—I am a very sexual person and for I don't know how many months … I was out of commission…. It was not a good time, but I didn't miss sex because I wasn't even functioning.” One woman described the feeling as: “It's hard to feel sexual when you feel like this dead person walking around.”

Violation and dehumanization. Three narratives presented the depth of violation caused by multiple myeloma and treatment (3/6). One woman used the following description: “I think of it as this unwanted visitor. Like a person or a thief that comes into your house in the middle of the night—you had a window opened and somebody took advantage and that is how I think about the disease.” Another participant reported: “I basically lost a year of my life. That is the way I look at it…. August until May as lost…. All the things that make me who I am I wasn't during that period. So, it didn't just take away my strength, it took away who I saw myself as a person. You know … my hair, my intellect, my reading, my hobbies, all these things.”

Participants also used metaphors to convey a sense of “feeling dead” for a long period of time after the transplant (2/6). One woman used the following example: “You kind of feel at times like a dead person. Like a person waiting to die—you know that expression from the movie Dead Man Walking? The expression is that when somebody has the death penalty and when they are walking from their cell to where they are going to be executed the expression in the jail is ‘dead man walking.’” In another participant's words, “I wasn't a human for about a year…. I didn't really consider myself a person for that period. Just like existing.” This excerpt in particular highlights a common disconnection from self that appears following various traumatic events beyond cancer.

Isolation. Participants described struggling with feelings of isolation in illness. For some patients the feeling of isolation was secondary to the patient's social withdrawal (4/6). One woman described her withdrawal early on: “I really was in a shell. I went to work every day. I went to work right after they gave me the diagnosis. I had myeloma and worked. I went to work and I don't think any of my clients knew there was a difference but I went home and would get into bed and just start crying. I wouldn't talk to anybody on the phone—I spoke to my sister, occasionally my mother, hardly even my children.” Another man recalled his retreat as follows: “I don't think I was very communicative. I barely spoke. I think I was upstairs in my room because I was just very weak.” For some patients, maintaining privacy during illness and protecting against shameful feelings were factors in limiting communication (2/6). As one gentleman said: “I am embarrassed to tell people. I try not to tell people unless I have to. It's just I don't want to go for the sympathy vote and tell them how hard it is.”

Patients described feeling hurt by people they thought were close to them and were not there for them in a time of need (4/6). This text reflects an idea that appeared in several narratives: “There are a few people that I thought would be more supportive or who I thought would be there.” Participants often made a conscious decision to “just let it go” and not maintain a bitter attitude. The conflict between the disappointment and dismissal of the painful feeling was striking in the narratives; for example: “I thought I worked with people that were sincere and that cared but they never came to visit me and I think that really hurt me…. I don't know if its because sometimes people are fearful when other people get sick but I was truly surprised…. And you know at this point I really don't care.”

Interactions with strangers also played a role in the isolation experience. Patients described the feeling of walking down the street and feeling different from everyone else (2/6). One woman described her experience this way: “I always thought of myself as an active, you know, relatively attractive person … and then all of a sudden, you know, you feel like people who might have been attracted to talk to you are all of a sudden treating you like an old woman—‘here let me hold this door’—you know, they are nice … but you feel like the first response from people is one of sympathy when you just want to be a normal person. You just want to be treated like everybody else.” Another participant described what it was like for him walking in the streets of his neighborhood for some time: “I remember people would avoid me in the street. You know, some people you know, they weren't sure how I would react and I could see that they would avert their eyes.”

Sense of vulnerability. Most patients described feeling vulnerable at some point (5/6). For some, it was rooted in the severity of physical changes (i.e., hair loss, physical appearance). One female participant had severe vertebral collapse from her myeloma, causing her to be markedly hunched over and necessitating a walking aid. Her physical appearance betrayed her internal beliefs of being an active and young woman: “Physically I think its hard just looking—I look at myself—sometimes I am walking and, you know, I don't feel bad and then all of a sudden I catch a sight of myself in a mirror … and I think ‘oh my gosh, that's me!’ and its hard to look at that.” Another gentleman described his devastation when he lost his hair following chemotherapy: “I wore a baseball cap, my daughter bought me a whole bunch of baseball caps and I wore some polar fleece caps, I looked terrible. You know, I lost 40 pounds and I looked like a cadaver. It was awful.” The sense of vulnerability captured in these narratives represents the compromised body image people experience in illness.

Nearly all patients cited hair loss as the most salient part of looking different and this change as being deeply connected to feeling vulnerable (5/6). Half of patients described the hair loss as representing a threat to privacy. It clearly indicated to the outside world that something was wrong and forced the topic to be addressed in instances they may not have otherwise chosen (4/6): “That was the only drawback, when I lost my hair. Now all of these clowns know that I have it…. Everybody else could see that something was wrong.” Another woman described the impact it had on her work life: “When I lost my hair it was evident that something was wrong and I had to tell my clients and I had to prepare them so that I was going to be out for a while but I would be back. And it really wasn't as hard as I thought it was going to be. I mean telling them. It was hard the first couple but then after that I got more used to that.”

Another source of vulnerability related to medical errors rather than the myeloma itself (3/6). One participant described the following experience while in the hospital: “I believe they put in the wrong catheter…. They wound up not taking it out when they should have and they were going to change it in a couple of days and it was the wrong one. From that there were so many ramifications, … and sure enough I wound up with an infection. Total Body Infection!” Another participant said the following after realizing that laboratory mistakes cost him delayed treatment: “I just knew that I would stay on top of things more. I said we have to watch them, the left hand doesn't know what the right hand is doing all of the time.”

Two of the female participants suspected that at certain points they had been treated inferiorly because they were women. When one woman initially went for workup she was sent home by the emergency room physician who said that nothing was wrong. She said the following: “I really felt that they treated me like this middle aged woman who was slightly insane and didn't know what she was talking about and wanted someone to notice her.”

Burden on family. All patients discussed the impact of their cancer not only personally but with great sensitivity toward the impact it had on immediate family. As patients grew weaker from treatment, spouses or children shifted into roles requiring extensive caretaking. Patients described the treatment as not only difficult on themselves but also tremendously burdensome for their loved ones, who took on extended responsibilities and worried a lot. Two of the married men described the degree to which their wives suffered while they were in treatment. One man shared the following: “Listen, I tell you, as much as I suffered, she suffered just as much. It was very hard for her. She also lost a year of her life. She is a very active woman, she plays tennis five times a week, she has an active social life, and basically she was my nurse for a year. So I am sure—it was very, very hard on her. But again, she had a lot of support from her kids and from family and from friends, and I think that is what pulled us all together. She had a very tough year. I think she may have had just as bad a year as I did.”

Most of the patients (5/6) sensed that to some degree their illness had an impact on the children. One participant described an entire shift in the family system in the year following his transplant, and how it influenced the children in particular: “And I think all the kids suffered from it. I don't know exactly how to describe it but I think it changed them a little bit. Its pretty scary, the whole thing. But I think the main thing is that my wife, who is really a powerful woman, was not around for that year…. I think the poorer student—I think he may have suffered more because he generally had the sort of attention from us and we paid attention to his grades and that year we weren't able to do it at all. So, I think they suffered.”

Themes and Repeating Ideas

Confidence in doctor. All but one of the participants endorsed a sentiment of extreme confidence in their treating physician (5/6). Patients conveyed a feeling of being in capable hands and felt they had the best hope for prognosis based on the treatment they were receiving. As one of the woman said, “I feel like I am in the best hands. I mean with Dr. X I think he is always looking at the individual case and I think, you know, he is just looking to find a cure and he will try to do what the best thing to do for me is. I think he is on the cutting edge of everything and so my best chance is really here…. Whatever time I have left to live I feel good about that…. I will have afforded the best opportunity to live a relatively normal type of life with multiple myeloma.”

Trust in the doctor was closely connected with the doctor's knowledge of the disease (6/6) and/or the doctor's capacity to instill a sense of hope while being honest (6/6). Two gentlemen described a common experience at the first meeting with their doctor: “I liked him immediately…. The first day we came in here … he sat us at that big conference table … and explained what myeloma was and drew maps and graphs and spent an hour and 20 minutes with us explaining the whole thing and how cancer develops, specifically myeloma.” Direct and attentive communication from the doctor was noted to be important by all patients and was a strong factor in deciding who the ultimate treating physician would be. All of the patients agreed that a positive connection to their physician was a crucial element in feeling safe and hopeful while undergoing such a difficult experience and that the relationship they had with their doctor had a large impact on how they navigated through treatment. Another gentleman felt that his doctor was attentive and took the time to help him feel at ease about the future. This was important to him, given the terror he felt at the time of diagnosis: “Actually it was pretty gruesome and difficult until after I saw [Dr.] X because then he talked about all the possibilities and I was in such good health and I was only in stage II, that there was—while there is no cure necessarily—they were looking to make this a maintainable disease.”

Appreciation for the cancer center. At the onset of the research study, the significant role that the cancer center played in patients' experiences had not been anticipated by the interviewer. Each narrative provided extraordinary feedback—often spontaneously—on the extent of support they felt from the nurses and extended staff at the cancer center. All participants (6/6) endorsed a high positive regard for the center in terms of the nurturing and efficient staff they had encountered. The center was described as a place that people enjoyed coming to in spite of it being for cancer treatment (2/6). Language used in reference to the center included “great,” “incredible,” and “impressive” (5/6). The kindness and responsiveness of people directly involved with their care as well as the extended staff at the center was richly articulated by each of the patients (6/6). As one participant said, “Every person from [security guard] when you walk in the door to every person, I have never had anything but kind and gentle, and I don't know where they find these people from, but they must interview people very well to let them work here.”

The importance people attributed to the humanizing and comforting approach of people involved in their treatment either directly or indirectly emerged from the text. In one patient's words, “I feel that people treat you like a human being and they are so caring and they are really concerned about you and everybody knows you by name…. I feel like I have been very supported here.” Many participants also talked about the dedication and quality in care that nurses showed both in the cancer center and the stem cell unit of the hospital (4/6). One of the gentleman recalled, “The stem cell unit is phenomenal…. There is one nurse to every patient…. They are very, very good also…. I go back there to thank them all of the time. There was one nurse, … to me, she saved me. I considered her to be the person who saved me over there. I owe her a lot, she was very nice. I am telling you I feel a lot of gratitude for the people who took care of me.”

Overwhelming social support. The importance of having a strong social support system while going through treatment was brought up in each narrative. Its impact stood in stark contrast to the isolation experienced by patients when significant people were not there for them they would have expected otherwise. Participants felt enormous gratitude for people that had surrounded them with kind acts during their illness. Many conveyed a sense of awe at the persistence of others and the lengths that certain people would extend themselves to be there for them during treatment (4/6). As one patient stated, “People have been very nice. So that has been really great. It gives you faith in humanity. You know people don't know you but they are so kind and they just extend themselves in may ways, so I think it really made up for things that happened that surprised me negatively.”

Two of the patients described their surprise at the generosity of people whom they would not have considered close prior to having cancer. Efforts people made in practical ways were especially appreciated, for example, helping with car rides, grocery shopping, or cooking or helping with financial matters (3/6). One of the men said, “Everyone is so thoughtful. You know, we had to rely on people helping me. I couldn't drive for a while…. I had neighbors that jumped on it to drive me to radiation every day for 30 days.” Another woman reported her experience as follows: “This one particular friend, it might even be a month before I feel like I can talk to her—is just so happy to hear my voice—and caring…. It really is amazing—friends of friends when you see them asking in a caring way. Because there are ways people can look at you and there are ways that people can look at you. And there are certain people who look at you and they are so awkward and they feel so sorry for you. And there are those who are so caring. You know there are so many people who are just so capable and caring and I think to myself, I don't I know if I would have been—hopefully I would have been. It's just amazing the capabilities of some of the people who are there with you and you don't have to lie to and say everything is fine.” Support came from spouses, children, siblings, and friends and neighbors predominantly.

Strong family presence. Three of the participants were married, and a fourth was divorced but in an amicable and close relationship with his former wife. In all cases, participants described the extensive support they got from spouses and gratitude to have had them by their sides throughout the experience. The men had strikingly similar descriptions of the role that their wives took on from the onset of diagnosis. They described being highly dependent on their wives during treatment. One gentleman stated, “She was the captain of the team.” Wives were described as fully talking over all financial, organizational, and scheduling matters while their husbands were ill. One participant described it: “She was—without her I wouldn't have made it. She took care of all the medications, she drove me back and forth to the cancer center almost every day to the hospital…. Without her I wouldn't have made it.” This sentiment was expressed very similarly by other male participants. Another gentleman said of his wife, “She has been great and I have had a lot more respect for her since this because she really rose to—she took care of all the insurance stuff … and having to deal with Dr. X and researching him, and all that kind of nuts and bolts stuff…. She has been fabulous, … Even my schedule, … she has got in her diary…. She handles all that stuff.”

Participants were split in their attitudes about turning to their children for support while having cancer. Four of the participants described reluctance to depend on their children or to share the experience with them. Of the two men who felt strongest about this, one had opted not to disclose his diagnosis to his young children and the other had refused to allow his youngest children to visit while he was in the hospital during his transplant. In all the narratives, there was a desire to protect the children from the burdens of worrying about their parents or feeling responsible to care for them. As one of the women expressed it, “I don't think I have let them in enough…. They are grown up women, you know, and I was shielding them…. Its hard for me to go to her…. I guess I feel like I am the mother, I should be the strong one. How can I let my kids see me fall apart.” Of this group, two of the patients grew to realize that it was important to their children to be there for their parents and, over time, allowed them to play a greater role of support: “You could see how much it meant to him to be involved, see what I was going through, meet the doctor…. I guess they have to see you; even if they are talking to you on the phone and have been kept up on the latest information, apparently that is not enough for people.”

Two of the female participants described an entirely different experience with their daughters during their illness. Two of the women relied heavily on their children for emotional support and/or caretaking. As one of them said, “My daughter—its been really hard on her and she has done all of the chores, the banking, the cleaning, the shopping, and taking care of me and making sure I am OK and making sure that I have something in the beginning to eat and all kinds of things, … and hollering at me if I tried to do too much. So emotionally she has been a great support.” In these two cases the women were single and did not have many other people around to help them daily. The differences seen in attitudes about relying on children in illness among the participants may have been related to the availability of other support systems.

Finally, 4/6 participants described turning to their siblings in the earliest phases of the illness. Of this cohort, three continued to rely on their siblings and maintained positive feeling about the support they felt from them. In these cases two of the women had sisters that rallied the support of extended communities to assist their siblings in some way: “My sister has been really active with groups in her church and in her community…. They sent me a check for like 2,000 dollars!” In other cases, (4/6) siblings were there in a more intimate way, either coming to stay with them, helping to get affairs in order, or accompanying them for doctors visits. As one of the gentleman recalled, “I have a brother, yeah, he's been great…. He came up right away from Florida … and he came up immediately when I told him and he stayed for about two weeks.”

Relating to other cancer patients. Most patients felt that being able to relate to other patients who were going through similar experiences played an important role in coping with myeloma. A majority of patients (5/6) described a sense of security and belonging to a larger community when connecting to other cancer patients. One gentleman explained the experience as follows: “I think that people with cancer look at other people with cancer as part of a club of some kind…. I remember when I would walk into the cancer center and I would see other people, you know, we all, like, winked at each other … if we had the strength. Because we're—it is a club. You know breast cancer, colon cancer, whatever it is. If you have the empathy you feel some concern for them.” Two men described a heightened sensitivity for sicker patients and experiencing guilt in their presence: “I felt bad. I was the healthiest looking patient on the oncology ward so I was still full of pep and energy. I wanted to exercise. So they had me walking on around the floor. I said ‘I feel guilty. This is not right, walking around in front of these people.’”

Several participants were strongly involved with the Multiple Myeloma Research Foundation (MMRF). The organization was regarded as an excellent source for educational material and a medium for sharing stories with other myeloma patients. Although no participant in the present study was involved with a formal support group, participants relied on the MMRF tremendously as a support system. In one participant's words: “To me the luckiest thing is the Multiple Myeloma Research Foundation.”

Personal coping. All participants discussed personal coping methods throughout their illness. Maintaining a positive attitude, humor, and spirituality were cited as helpful ways of dealing with the difficulties of cancer. Participants agreed that having a generally positive outlook on life prior to getting sick was an important protective factor (3/6). In one gentleman's words: “I am the type of person that, in the middle of the work day, I will just stop in between meetings and smell the flowers…. I have a fairly good attitude of enjoying life as you go along. I like ordinary days, … so it's what has helped me—this has not been so bad and like I said, people have it worse.” When asked further he agreed that this attitude was an important factor in helping him to cope. Four of six patients acknowledged that some type of spiritual connection facilitated coping. One woman reported: “And I feel like I bought some solace through my religion…. Whatever a person's faith is, if you really believe that no matter what happens to you there is still something there, there is still kind of a grain of hope that you have a future, that what you did was worthwhile, … I think those things sustain me.” Finally, two of the gentlemen reported that having a sense of humor was an important part of facing struggles related to cancer within the family system. One man explained: “You know, we kid around a lot about it. You know, we have been kidding around about the myeloma from the first day. You know, it was, like, joking in the house…. I think we take it kind of lightly but seriously.”

Themes and Repeating Ideas

Strengthened body and spirit. Eventually, the recovery period following the transplant begins to take a positive turn. Participants described feeling a surge of physical strength after a long time of weakness (5/6). One woman described the shift as follows: “And it seemed like you just kind of get your strength back and then slowly but surely you start to feel like you want to move around or get up or do something with yourself…. I started to get a little more strength and was able to handle each day a little better. When you start building that back again, that's when you start feeling better.”

Participants reported that the increase in physical vitality helped to restore the emotional state (3/6). One gentleman reported: “As soon as I got back [strength] all these passions returned…. So I think when the hair returned and all these other things returned, everything returned. You know, you become yourself again, which is the strength. I don't think it has anything to do with your mind; I think if you don't have the strength you just can't move.” Following a transplant, the restoration of the physical self was a key component in reestablishing the individual sense of self. It was a significant aspect of “rehumanizing” after the trauma of diagnosis and treatment.

Themes and Repeating Ideas

Changed body. Some patients were still on maintenance therapy regimens such as Thalidomide, Velcade, and Dexamethasone. Maintenance regimens were associated with difficult side effects including weight gain, short-term memory loss, insomnia, fatigue, and painful neuropathy (numbness and tingling in the extremities). One participant described his challenge of living with side effects: “Now I am having a lot of trouble with all the side effects of thalidomide. Like today, I have to tell my fingers are going numb. And so there is a multitude of side effects. I mean when I take the dexamethasone on Saturday, I can't sleep on Saturday night, I can't sleep on Sunday night, and this is with a sleeping pill. With the sleeping pill I get up to maybe 6 hours now. But it's remarkable how the dexamethasone has such an effect on you. Last year I was taking it 4 days in a row, and I was a pretty tired guy the end of 4 days. I would only sleep 4 hours each night.” Another participant reported: “I don't know how long I am going to be able to continue with all of the [thalidomide] side effects. They say that there is something else out there, so I guess I will have to see if I can try that…. That's about it; you just go along and keep going until something clicks.”

After transplant recovery five of six participants felt that their bodies were drastically affected by the chemotherapy. Most patients expressed concern about their physical appearance and/or deterioration of overall strength and stamina. The sentiment “I am in very bad physical shape” was echoed by several participants (4/6). Two of the women were especially self-conscious of their diminished attractiveness to others. Half of the patients felt that their bodies and health were so unpredictable from day to day that it impacted their willingness to make plans with others. One woman said, “Many times I make plans and I say ‘Gee, I hope that I will feel good that day and able to make it and what have you.’ So it's like I am doing everything on a last-minute basis. I want to say it depends on how I feel whereas before … there was no thought about it. Now I worry about how I am going to feel.” Intermittent pain and excessive fatigue are enduring realities for patients with myeloma after transplant, negatively impacting quality of life.

Less hope for future treatments. Although participants varied with regard to number of treatments received and treatment outcomes, few were hopeful about engaging in future treatments. For some there was less willingness to repeat such difficult side effects. Two participants questioned how committed they would be to engage in future treatments or to continue with maintenance programs such as thalidomide. Patients who expressed this idea felt that the treatment was so demanding of time and taxing on quality of living. This cost-versus-benefit analysis for future treatment was not entertained in the early stages of illness. One gentleman expressed this idea in the following way: “I was willing to do everything this first time. I was 49 when this thing started and … I didn't want to die. But I really don't want to do this again. So I am not even sure what will happen when this thing returns.” Another participant explained, “I wonder sometimes if I live seven years, if I live 10 years, how much of that will I be involved in just coming for chemotherapy.”

Other participants were discouraged by the inefficacy of treatments they received or the short length of their remissions. Patients who had relapsed at some point talked about their disappointment at this stage (2/6). In one woman's words, “I had come out of remission…. I was disappointed. You know, to me it meant … ‘Oh it's less than a year! Maybe 9 months, and I have already relapsed!’ And I obviously don't think that is good.” Two of the women with refractory disease (nonresponsive to treatment) talked about the challenge it posed for them to sustain hope for future treatments after continuous disappointments (2/6). As one woman stated, “You know, I have had so many different medications that didn't work, I can't get myself worked up for things anymore because its too disappointing, you know, when it doesn't.”

Enduring threat of relapse. All participants agreed that the most difficult aspect to living with myeloma is that it has no cure. One patient said: “The problem is that myeloma returns and that it is not curable. So that is in the back of my mind always…. It is always in the back of my mind that I know this thing is coming back and the question is when. I think that's what's different maybe about this myeloma maybe than other cancers, … certain cancers can be cured and myeloma can't. So I think that's a problem.” In another participant's words: “I was reading that they say there is no cure for myeloma. I have a friend or two that have had other cancers and—they went they had an operation, had it cut out, took chemo to kill it or what have you and they were cancer free and that was it. With me that's not the case.” These excerpts highlight a crucial difference in the experience of a myeloma patient as compared to a patient with another kind of cancer. The worry associated with myeloma is not only about having cancer, but about the fatality of it.

The narratives shared strikingly similar language in conveying the chronic worry of multiple myeloma patients (5/6). Half of the participants used the metaphor of “having a weight placed over them” to describe their constant feelings. One participant explained, “Unfortunately it never leaves my mind for a split second.” Half of the participants used the same metaphor to describe the constant feeling of having a weight over them. One man reported the experience of talking with his wife about the feelings he had: “I said ‘It sort of takes the fun out of life’ because [my wife] said ‘It's not different than anybody else. You don't know what's going to happen day to day.’ I said ‘No, this is like having a weight over your head compared to other people and you have to make sure the rope is always good…. This is different, living with this.’”

Anticipating loss. Living with a heightened awareness of mortality had a strong emotional impact on participants. They discussed the anticipation of missing out on significant life events with family, unfulfilled dreams, and simply being alive. Participants admitted that the concept of death was less upsetting to them as was the realization of how much they appreciate life and would miss it (3/6). One woman said the following: “I am not afraid of dying, but I just love living so much…. I would lament not being here…. You want to be here for everything and know you can't. Nobody can.”

Participants talked about the difficulty of leaving their children and/or grandchildren, in particular missing the chance to see them grow or to take care of them (3/6). In one gentleman's words, “The one thing that makes me curl up into a fetal position on the floor is my children because I am very, very close to them.” Parents of younger children seemed relatively more anxious about leaving their children. When participants had grown children, more self-reassurance was exhibited that their children were independent and would be all right.

All women (3/3) verbalized frustration in the anticipation of unfulfilled life plans: “I think about the plans that I had, … all the things that I was going to do when I retired. I had plans and all that changed.” In their interviews, the women discussed struggling with conflicting feelings surrounding this issue; on one hand it was difficult to motivate themselves to do various activities, whereas on the other hand there was a yearning to take advantage of the time they had ahead of them. One woman described the experience as follows: “I am caught in between—again do you stop your life for it? I am in a remission now and physically I feel fine. I haven't felt this fine in 3 years. So this is my time. And myeloma—it will come back unless there is some breakthrough and a miracle happens. It's probably not going to happen in my lifetime—I don't know, maybe it will, but, you know, what am I waiting for?”

Two of the female participants were single at the time of the interview and had not been involved romantically for long periods of time. Both women stated that since becoming sick they weren't as willing to become involved in a relationship, feeling that it would be an unfair burden to someone else. As one woman said, “I feel that I am reluctant to even want to get involved with a relationship. I feel that right now I am carrying too much baggage…. A person may want to do something and I don't feel good and I don't think a person would want to stick around that person.”

Acceptance. Some of the participants expressed attitudes of acceptance toward their cancer. Half of the interviews included the sentiment that this was simply a part of life. People felt that having cancer was not something to feel bitter about or to blame anyone for. One woman said the following: “I don't feel that my illness is—you know, it just happened. You know, it happens to some people and it happens, so I am not bitter about that. I mean it just happens. So, that is—I dealt with it like that. I am not happy that it happened, but it did and so I just dealt with it.”

Two participants talked about the importance of looking back on life achievements and successes as a way of coming to terms with a foreshortened future. They expressed an appreciation for rich experiences they had over the years and how it enabled them to feel a sense of acceptance about having cancer. One gentleman shared the following thoughts: “I have been able to sort of put it in context and deal with the most profound thing that has ever happened to someone. Which is one's impending death…. I am not going to plan a birthday party 10 years from now. I probably won't see my children through high school. It's things like that that chokes me up…. [But] I have been really blessed with a very rich life. I have literally been on every continent of the world, several times. Had wonderful, great, passionate loves, done some very interesting things. So I have got no complaints. There are really no complaints whatsoever.” A similar idea was brought up by one of the women: “I have done a lot in my life and I have met a lot of people and I have had a lot of wonderful opportunities, I really have and I think those things sustain me.”

Identifying resilience in oneself. All of the interviewees were asked about how having multiple myeloma might have changed them, negatively or positively. The majority of people initially responded that they didn't feel having myeloma had changed them at all. “I don't think that it changed me that much” was an idea that appeared in five of six of the interviews. However, in spite of these initial reactions, some participants gave examples of how they had changed or grown to see things in new ways. One man talked about the difference in how he responded to a colleague who was diagnosed with cancer: “Now I am different…. This buyer that I do business with from Ohio, I found out that she has breast cancer, and I am calling her and trying to comfort her and I would never have done this before in a million years. I wouldn't. I would have thought it was rude and inconsiderate to intrude on her privacy.” He was able to recognize deeper empathy in himself, and it helped him to reach out in a way that he would not have previously.

Other participants felt that having cancer helped them to identify or validate an inner strength that otherwise may not have been accessed. Half of the participants expressed pride in how they had coped with their situations. One man shared the following: “I think it's clarified and gelled a lot of those thoughts that I have wondered if they were true, … things that I wondered if they were really true inside of me…. I sort of wondered am I tougher, or am I weaker than I thought of myself? … I am a little bit prouder of myself and I go through periods of insecurities, just like everybody else does, but I am a little bit prouder of myself…. It's qualified what I suspected about the core of me. I am a pretty damn, stand-up, tough kinda guy. You know? And I am proud of it.” In one woman's words: “My relationship with myself is entirely different—I really am an emerging person. Not really different than I was but totally different.”

Strengthened connection to others. Most participants discussed the role that myeloma played in strengthening bonds with people in their lives. This was especially true for all participants who were married, evident in expressions of deeper appreciation and respect for their partners' dedication (4/6). One man said the following of his wife: “She has been great and I have had a lot more respect for her since this. Because she really rose to—she took care of all the insurance stuff and all the screen actors' guild insurance, and having to deal with Dr. X and researching him, and all that kind of nuts and bolts stuff, that I am not very good at…. She has been fabulous. I can't fault her one bit through this whole thing.” One of the women described the positive impact of myeloma on her marriage, one that had been characterized by conflict and lack of intimacy for many years: “I think we really were not in a wonderful way and were not living together to our potential…. There is this hope…. Whether we are fighting or not he takes such incredible care of me, … I mean, with the best of humor. And this has been a long time…. He has been so amazing, I can't imagine, the cooking, the shopping, everything. He has been incredible, just incredible. Everyone should have a husband just like that.”

Patients discussed how committed they were to helping other people with myeloma (5/6). Some patients were involved in advocacy work for myeloma patients through the hospital or myeloma organizations. One woman who is presently involved in advocacy work for greater research funding said the following: “I am a contributor to the research foundation. While I can't give a lot of dollars I do try, and I saw the newsletter, I get it online, and they are having, for lobby day, they are going to have a group going to Washington, DC…. I would like to do that. It makes you feel like you are doing something. I think if there is something positive that can come out of it, … if I can go with a group and go and talk and help to put a face on the disease, and get more money for research, that's great. I would love to do that.”

One gentleman explained that his motivation for participating in the present study came from his deep sense of gratitude toward people who had been responsible for his care at the hospital: “I really feel a debt of gratitude. That is why I came to this thing…. I just feel that I owe this hospital something…. You know, if it could help somebody. I feel a debt of gratitude to them.” Other patients explained that participating was important to them because it presented an opportunity to potentially help others.

Living while dying. Several participants stated that a core difference between myeloma and other forms of cancer is that myeloma is not curable. Patients realize that unless research advances, relapse is inevitable and survival is statistically 10 years, more or less. This knowledge presents a unique circumstance to patients; they must come to terms with living while dying. Life expectancy is significantly less than ordinary, but the initial reaction at diagnosis—that death is imminent—dissipates once patients appreciate that they have made it through treatment (3/6). At some point a decision is made that in spite of time being limited, there is still plenty of opportunity in life (4/6). One woman described the progression of her experience as follows: “It went from a state of shock that I thought, as they say, ‘put your business in order’ because you know, I don't know, I didn't know whether I was going to be around the next year or what. I have gone from that to, well I guess I will be around a little longer than I thought and now its just I am here; whatever is out there, I will try and just go ahead and try to live as normally as I can. But it's still something that is in the back of my mind every day.” Four participants expressed a similar sentiment of “It hovers but I continue to do the day to day things.”

Two women talked about the importance of deciding that myeloma will not be the focal point of their existence. Whereas in the early stages the women were preoccupied with gathering facts about myeloma or in monitoring their status, a conscious decision was eventually made to not allow myeloma to take over life. As one lady described it, “I think after a while you sort of realize you just have to, you just have to move on.” The other woman said the following: “There is this whole inner world of things going on in me and there are times when I can actually say ‘I am not my [myeloma protein level] numbers' and really, really mean it…. On the inside it feels different. To me it always feels like lightness. Like every once in a while, the burden of this will disappear and it is kind of, like, when they say you have had a load lifted off of your shoulders…. It's almost a lightness and you can look around the world and say ‘oh, there is a world out there! And people are living. And, I mean, enjoy something!’”

Many participants reported that following recovery there are good days and bad days with regard to physical and emotional well being (4/6). One participant reported, “Yesterday was a good day and today is not necessarily a good day.” Women tended to report that some days felt more manageable emotionally than others, that “It's not a straight path from here to here.” As one woman explained, “It kind of comes and goes. If you had spoken to me 6 months ago I might not have been in this place. I might have been better, I might have been worse, because it constantly comes and goes.” Another woman reported as follows: “And there will be days when I will be at home and I will just start to cry, you know, I feel bad, I really do. And then I just kind of pick myself up and say, you know, what can I do?” These excerpts reflect the ongoing nature of the struggle with myeloma. Unlike other cancers or other traumatic experiences, it is not an event that eventually becomes part of the past. Rather, it is an enduring reality for patients, who must grow to learn a new and challenging existence.