Collected Stories: Gay Men Talk About Cancer

Recorded August 10, 2003

Michael Samuelson:
Hi, and welcome to the American Cancer Society Cancer Survivors Network®. I'm Michael Samuelson, your host. Today I'll be talking one-on-one with gay men about their experiences with cancer. As a cancer survivor myself, I am pleased to speak with our guests about such things as: receiving quality medical care; managing side effects; relationships and social support; and certainly, the issue of finances, insurance and employment; health and wellness, in general; and in particular, with this particular interview, the opportunity to talk about caregiving.

Larry's Story: Caregiving Takes Teamwork

Michael Samuelson:
I'm now speaking with a caregiver whose name is, coincidentally with another guest in this series, Larry. Larry lives in Michigan with Stuart, his partner of 25 years. Welcome, Larry.

Larry:
I'm glad to be here, Michael. Thank you.

Michael Samuelson:
Now, Larry, Stuart was diagnosed with a type of head and neck cancer, cancer of the salivary gland, back in January 2002. He was treated with chemo, radiation and also surgery. Just recently, also, in your situation, your 93 year-old mother was diagnosed, I understand, with my [own type of] cancer, and that's breast cancer.

Larry:
Correct.

Michael Samuelson:
You're her primary caregiver, as well. Thanks so much for joining us today, Larry.

Larry:
I'm really glad to be here, Michael. Glad to be of some support and be able to offer some input.

Michael Samuelson:
This is a critically important part of it, because so often people think in terms of the individual who has cancer, but we forget about that person who is perhaps the person behind the cancer [survivor], and that's the caregiver. What was that like? What was it like for you when Stuart was diagnosed?

Larry:
It was a pretty stressful time for me, all around. I mean, lots of things had been happening, not only Stuart's illness. I recently got a promotion at work, and I was trying to finish up my Ph.D. dissertation, was right in the middle of the study, of collecting data and doing the study, so it couldn't have come at a worse time for me. Just having to organize priorities, dealing with the stress, and naturally Stuart's treatment and care became first priority.

Michael Samuelson:
You've got all these things going on. Your mother's diagnosed, you're working on your Ph.D., your life partner has been diagnosed with cancer--all of those issues. In terms of your role, how did you see yourself fitting into that role? What was your responsibility, according to the way that you viewed the world?

Larry:
I saw my responsibilities--number one, in ensuring that Stuart got the proper care, treatment. That he was comfortable. Really providing for his needs at the time. Support for him. Basically support for him. I put everything else on the back burner at the time, and I found I was getting some burn-out there fairly rapidly, too, myself. And then, after a while, realized I had to start doing some things for myself, too.

Michael Samuelson:
Let's go ahead and jump into actually right now, because what happens very often is people forget that the caregiver often needs care himself or herself. And if it's not being provided by others--and certainly we're reluctant to take it from the individual who has the big "c", cancer--how do you take care of yourself?

Larry:
I found, number one, people were offering to do things. At first, it was kind of hard. I kind of wanted to do them myself or do them for Stuart. I finally decided, "I'm going to start taking people up on their offers." So friends, neighbors, actually acquaintances, for instance, offered to drive Stuart to and from radiation. Once that started, I never drove him to radiation again in the six weeks, because there were just enough volunteers to do it. That alone gave me more time to concentrate on my job and some other things that may have been causing some stress. I also found it very important that I get out at least one night a week. At first, I was concerned about leaving him, and a friend convinced me to, believe it or not, actually join a gay bowling league. Not having bowled since high school, and never having been a bowler or having seen it as a sport I'd be interested in, I started bowling Friday nights. And I think the first couple nights, some--like that first couple weeks that I did it, I had someone stay with Stuart. After that he started to get better, and it would kind of be his night to read, or movies and be alone, or have someone else come and visit him. I would go out bowling and go out sometimes afterwards, and you know, just get away for a full evening.

Michael Samuelson:
So, I'm hearing a couple of things. One of them is the recognition that you also needed to be able to have a release and an outlet in terms of your own personal life, as you moved forward. You could do that by exploring new activities and also by allowing those people who were kind of standing in line offering to help, to let them go ahead and help.

Larry:
Right. I've always been a little reluctant at first, so I say, "No, I'd rather do it myself." But these people were waiting. Definitely take up the offer.

Michael Samuelson:
Larry, I've got a question around the emotional aspect of this, because with any couple going through any situation--in fact, just going through life--there are issues that come up that trigger emotions. When you're caregiving for somebody going through something as serious and as intense as this, when you had your own emotional issues coming up, either around specifics related to cancer or just the normal kinds of things--did it impact your ability to express them directly to Stuart?

Larry:
As a matter of fact, it did. I really--it was very difficult to express them to Stuart. I had been--I did start seeing a therapist, and I didn't want--I felt like if I were expressing my emotions to Stuart, it would be an additional burden on him, and I didn't want to do that. Eventually, as time passed, I was able to. But for probably the first six months, it was very difficult to express my emotions regarding some of the frustrations and overwhelming feelings I felt.

Michael Samuelson:
Although you weren't able to discuss them with Stuart during that initial six-month period, did you discuss them with anybody else before you started working with the counselor? If not, how do you think it had an impact on you?

Larry:
Oh, I did discuss them with some friends. I discuss them--we also joined a gay/lesbian/transgender group at Gilda's Club that was very helpful. There were some times that I went and Stuart didn't, and it was helpful. I had always tried to make it to a caregivers' group, but just never quite made it. My intent was to make it, but didn't. But I did discuss it with friends. And certainly Gilda's Club helped. Certainly things like that did help.

Michael Samuelson:
We kind of touched on this, with regard to your relationships with other people as a result of this. Have you found that in addition to the kind of episodic issues that were associated specifically with dealing with Stuart's cancer, are there things that are carrying true, in terms of your relationships with friends, co-workers, also with Stuart, as a result of the experience?

Larry:
I think the experience certainly seems to have strengthened our relationship a great deal. I mean, I felt it really reinforced our commitment. The support from the people I work with and friends and neighbors has been wonderful. And I think it strengthens lots of our relationship there, just in the willingness that people want to help and are actually honestly willing to help. And just makes me feel really grateful for the friends, the acquaintances and the people that I know. Even down to, for instance, even like some of the volunteers at the hospital and things like that. I mean, I--there was a volunteer couple that worked once a week at the hospital that were semi-disabled themselves, and they were just so anxious and eager to do whatever they can to make you comfortable and help--and things like that. It just really made me appreciate the people in my life more.

Michael Samuelson:
We touched on this next question, but in terms of specifics for you--not for Stuart, but for you--how do you take care of yourself emotionally and also physically? What helps the most?

Larry:
Physically I maintain a six-day-a-week gym schedule, just about. Physically I do aerobic exercise probably a minimum of five to six days a week, some resistance training thrown in there. And I did keep it up consistently through Stuart's illness. I didn't want to give it up. I felt it really important for just the physical release of being able to really have a vigorous work-out. I don't know if it's the [endorphins], or--

Michael Samuelson:
The endorphins--

Larry:
The endorphins, or what, that just always helped in just the feeling of--the physical exercise was always important for me. Emotionally it's always important to have past friends that I could feel that I could talk to about it. And later on that, you know, pretty much worked out that I could deal with Stuart when Stuart--let's put it this way--when I knew that Stuart was out of the woods, I felt much better talking to him about it.

Michael Samuelson:
And you used your friends as kind of a conduit of facilitation for getting to that point where--

Larry:
Right.

Michael Samuelson:
--you could then sit down to discuss things.

Larry:
Right.

Michael Samuelson:
You know, this is one of those perhaps strange-sounding questions, but anybody who has been through cancer in the household, or had the diagnosis specifically for them, recognizes that without humor it's pretty tough to get through life, period. And then, when you have a trauma like this, there are these threads of humor that enter into it that make you smile. And sometimes a good belly laugh and you end up feeling much better. Anything with you guys that you found to be particularly amusing, in a very therapeutic way?

Larry:
There's been lots of little incidents. It's just like sometimes going to group, sometimes explaining Stuart's illness, or the time when he was going through chemo and we were trying to debate shaving his head or not. And I went and got duct tape and just found that the hair would come out with duct tape.

Michael Samuelson:
[laughing] That was funny for who?

Larry:
[laughing] Afterwards it was kind of funny.

Michael Samuelson:
Yes.

Larry:
And there was one incident in the hospital, actually this most recent--his most recent reconstructive surgery. The care had always been wonderful before, and this last time, after his reconstructive surgery, they had released four patients to this one poor nursing team at the same time, and he was getting really impatient. And I'm walking in the room with the nurse behind me, and the first thing out of his mouth: "Where is this *%#$%? Where is my whatchmajig nurse?" And all I could say: "Say the word and she's right behind me. She's right here, Stuart." And he's still kind of--he felt really embarrassed and made up to her, but we've been kind of laughing about that for the last month.

Michael Samuelson:
Yes, there is a tendency to say things just as they come to your mind when you go through something like this.

Larry:
Right, and she was right behind me.

Michael Samuelson:
Well, fortunately for her, I hope she had a sense of humor, too.

Larry:
Yeah, I think so. By the end of the evening, they pretty much got on pretty good terms.

Michael Samuelson:
This experience that you're going through, and it continues not just with diagnosis and treatment, but it is a process that kind of continues with you, have you found that this has changed you, Larry, in any way other than the transitory kinds of things that are necessary now, but things that you carry with you and you anticipate giving you a different perspective on life, moving forward?

Larry:
Yes, definitely. It certainly has given me a greater appreciation of life. It really has made me see how fortunate I am and really how--it has really made me, I guess, look at all of my--I don't know--assets, or not necessarily assets, but it's made me feel just a--like a much more thankful person for the resources and things that I have, that unfortunately lots of people don't.

Michael Samuelson:
Two questions, as we kind of wrap this up. And again, thank you for sharing this. The one is, for those listeners who are in the caregiver position, like you are, and perhaps they're just brand new into this, what key piece of advice or suggestion would you have for--and again, particularly for a gay couple or for a gay who is simply the caregiver and not necessarily in a couple relationship--what advice would you have for that person?

Larry:
You can't do it yourself. You have to enlist the aid of other friends, volunteers, social workers, whoever offers help. You have to enlist the help of others. It's not possible to do things on your own and try to be independent and take care of everything.

Michael Samuelson:
To not hesitate to accept those who are more than willing to help you.

Larry:
Correct.

Michael Samuelson:
The other question, it's one that I asked Stuart as well, and it's one of those where I mentioned to Stuart--you wouldn't want to run out and join this club in terms of being this intimate with cancer, but once it's there, it does seem to deliver some pretty unusually-wrapped, but at the same time rather precious gifts. Are there any gifts that you have received through your being a caregiver to Stuart?

Larry:
Yes, there are lots of gifts. Certainly the stronger feeling of commitment, the realization of the resources and gifts that we do have, both as a couple and, you know, basically as members of this group of cancer survivors now. And certainly one of the greatest gifts that I found is the much greater appreciation of life in general.

Michael Samuelson:
The small things that we take for granted all of a sudden are magnified.

Larry:
Right. Correct.

Michael Samuelson:
Well, I can't thank you enough, Larry, in terms of sharing with us. It's just so helpful for everyone who listens and who reads the transcripts of this.

Stuart's Story: Lessons Learned in the School of Life

Michael Samuelson:
With me right now is Stuart. Stuart's a 55 year-old cancer survivor from Michigan. Stuart's partner of 25 years, Larry, is also a Cancer Survivor Network guest in this collection of personal stories. Hi, Stuart.

Stuart:
Hi, Michael, how are you?

Michael Samuelson:
According to my notes here, you were diagnosed with cancer of the parotid gland, a type of head and neck cancer, back in January of 2002. Your treatment consisted of chemotherapy and radiation.

Stuart:
And surgeries.

Michael Samuelson:
Oh, yes, OK. Very good. The surgeries were also part of that. Well, let's go ahead and jump right into it. That whole issue for anybody, when somebody says, "The lab results are back and you indeed have cancer," when the diagnosis first presented, what was your reaction to that?

Stuart:
OK. It was sort of backwards for me. I noticed the lump, had a CAT scan. The CAT scan showed there was something there, but my ENT said, you know, "I'll just watch it." And I kept on sort of pointing out, "It's growing. It's getting uncomfortable." He said, "OK, let's remove it." So, the way I found out it was cancerous is when--after he removed it. I came out of recovery and saw my partner, and took one look at his face and knew that the results were not good. That's when I knew it was malignant.

Michael Samuelson:
So, your reaction in terms of your diagnosis was really a reaction to the expression that was presented by your partner?

Stuart:
Right--

Michael Samuelson:
Going through that experience and then beginning your journey--actually your journey began when you discovered the lump--

Stuart:
Right.

Michael Samuelson:
Was finding quality medical care difficult? What was your role in that whole process?

Stuart:
Initially it wasn't that much quality medical care, it's the cancer I had. Salivary gland cancer is comparatively rare. So, consequently, it's usual that when you have a lump there, it's like no big deal. So it took a certain amount of prodding on my part to get anyone to take it seriously. Then when it was removed, it was very serious. What I did was actually, after the first surgeon, at my partner's prompting, we went for a second opinion at a cancer center in Detroit, and they were just spectacular. I mean, they knew what they were doing.

Michael Samuelson:
In terms of your role within that, once you found the right team, what was your role?

Stuart:
A lot of it was, for me at least, to ask questions. And a lot--once I talked to them, I started--I trusted them. To give you an example of one of the reasons--a trivial example- -I felt I needed to work with a doctor I could talk to, and my primary care physician, who I'm still with, has always been that way, so I've always appreciated that. But with the head of the oncology team, we're waiting for one of his partners, and he said--after he said, "Give me some background," and then he said, "Would you like some coffee?" And he went out and got the cup of coffee himself. And I sort of thought, you know, "I can talk to this person."

Michael Samuelson:
Yeah.

Stuart:
"He's just a real person," and, which is what he's proven to be over the last year and a half. And the team itself, some are better about talking to me than others, but they're all pretty good if I force them, like, "Wait, what does this mean?" I think it's been real important that I have been asking questions all along.

Michael Samuelson:
That you're comfortable at being part of the whole process.

Stuart:
Uh-huh. I mean, certainly there have been times when--how can I put it?--I've just sort of gone with the flow. Like some decisions, I listened to their recommendations. I didn't challenge them. Certainly many people who go through some things I've gone through, you know, choose not to have radiation or choose not to have chemo. I defer to my team. They're experts. They know what they're doing. If they think it's a good idea, OK, it's fine by me. And so, I--on the one hand--I was the leader of the pack, but the other hand, they're really the ones making a lot of the decisions.

Michael Samuelson:
I'm hearing you say what a lot of people do, in many different areas where there's a project involved, and that is that you make sure you've got the right team, and then once--

Stuart:
Yeah.

Michael Samuelson:
--you've got the right team, you trust them in terms of their area of expertise.

Stuart:
Right. Yeah.

Michael Samuelson:
Your cancer is one of those cancers that has so many facets to it, and also a lot of different side effects associated with it that are particular to your situation. Can you tell me about those side effects and how you manage them?

Stuart:
Sure. As a result of radiation, chemo and surgery, there is some physical damage to my face. But internally, a major thing has been narrowing of my trachea, so I understand I'm at greater risk for complications in surgery. But also, dry mouth. There are a number of over-the-counter things you can buy, there are some prescriptions I'm taking which help, but what I found works the best is sucking candies. In particular, a nurse mentioned green apple diet sucking candies and, guess what? They make my mouth really wet and they've really helped. Of course, I drink lots of water, or try to. So I mean, the biggest, you know, ongoing problem is dry mouth. The other thing is, because of the surgery, my mouth itself has shrunk in size. You know, it's trivial, it's minor, but it's a pain in the neck--not literally, but a pain in the mouth. I used to like things like big hamburgers. I can't eat them anymore, because they're too big. So I can eat smaller things, but bigger things just have to be cut up--

Michael Samuelson:
The issues like that that you present as physical side effects, they also have emotional side effects, psychological impact, as well.

Stuart:
Yeah.

Michael Samuelson:
Would you talk about that for a second, Stuart, in terms of the emotional/psychological side effects?

Stuart:
Uh-huh. There's a feeling of--especially the physical, the external physical-- that I look different in terms of other-- I feel like I don't talk the way I used to, and that bothers them. It certainly is better than it was a few months ago, but there's still this sensation of: I'm not the person I used to be. Most of the time, I'm OK with it, but especially when I was approaching the end of treatment, it really hit me hard that I really was no longer the person I was. I don't look quite the same. There is a bald patch that wasn't there before. My smile isn't the way it was. And while I'm very grateful to be alive and I'm grateful to be healthy, it's kind--I do sometimes feel sad and discouraged, because I'm not the same that I was. The good news is that most of the time I'm able to get over it pretty rapidly.

Michael Samuelson:
Those kinds of reactions certainly are so common to anybody who goes through trauma, be it in a cancer or a small "c" cancer, if you will. The issue is, when it happens, you've been able to come out of it. Stuart, what the catalyst that pushes you beyond that and out back into being optimistic and moving forward with life?

Stuart:
I think it's sometimes being stupid. Look, one of the things I realize about this whole experience is I'm really a positive person, and I didn't know that before. Two years ago, if you'd asked, "Am I a positive person?" I probably would have said, "No, not really. Sometimes I'm positive, but pretty much I'm cynical. And I can be nasty." And I can be all those things. But one thing I discovered going through this whole process is basically I am optimistic, basically I am upbeat. But some things I learned that--if you let yourself be open to it, it's amazing how much support there is. For example, one of the women across the street, who I didn't really know well, offered me rides to treatment when I was going for radiation. And that became my real outings, almost like ladies at lunch. But we went out for lunch after treatment. We got to know each other better. It was really kind of nice. And, politically and value-wise, she and I are at opposite ends of the spectrum, but she didn't care. She was, you know, able to help me, and I was able to take the help. So, those are some of the things that keep me going--

Michael Samuelson:
Well, it sounds like--

Stuart:
--my partner.

Michael Samuelson:
Yes, and part of that, though, comes from you, has to come from you. And what I'm hearing you say is one of the ways you've dealt with this is through an attitude that was always there, and perhaps it just had the light shone upon it--

Stuart:
Uh-huh.

Michael Samuelson:
--through cancer. And it brings it to friendships and partnerships, friends, family, and the relationships that you had before and you continue to have. What's been the impact with regard to your partnership in terms of Larry and to your friendships, and to even your family relationship?

Stuart:
Certainly with Larry, it's like any couple over the years, we've had our ups and downs, but there was like none of that this past year, the past two years. And he's been there for me. I know it's been hard for him. In some ways I think it's harder for him than for me. When I was sick, when I had surgery, things like that, I had drugs, I had pain pills, I didn't care. He was the one who saw me uncomfortable, who saw me disfigured, saw me swollen. But he was there for me the whole time. If there had been any doubt in my mind of his love, certainly this last year he's proven it. In terms of friends, most of my friends rallied and helped--Larry's walking by and making a funny face at me right now--

Michael Samuelson:
[laughs]

Stuart:
--but most of my friends, you know, rallied. You know, friends would call. I got an incredible amount of cards. When I first got back from the first surgery, the house looked like a funeral home. I mean, I had flowers all over the place. But I really appreciate--there are several people who I didn't know real well at work--who would contact me on a regular basis, not necessarily to call or to send cards, but did let me know they were thinking of me, which really surprised me. Then there were others who I thought I knew real well who I didn't hear from at all. One friend called out of the blue, "Hi! What's going on?" He found out I had cancer and hasn't called back in a year. But generally most people were supportive and loving. My relatives --those who were all long distance--were pretty good. My brother came up for a week to help me with radiation with his wife. So most of the response has been positive, I mean, yeah, there were some people who were weird. Several people have asked, "Well, what's your prognosis?" All I can think of is Bette Davis in Dark Victory. "Prognosis negative." I don't know what my prognosis is. I think I'm doing well but I can't give them an exact figure, and I think they want to know that.

Michael:
You know, Stuart, you actually bring up an interesting question, and that is, very often for cancer survivors we find ourselves in a very unique position of being a caregiver to our caregivers--

Stuart:
Um hmm.

Michael:
-- in the sense that sometimes they have a difficult time accepting, either in terms of simply an outpouring of emotion to the point where it's detrimental to them with their concern for us, or the fact that they're uncomfortable in how to react to it. Have you found yourself in situations where you're a caregiver to your caregiver?

Stuart:
You know, not overly. Larry tends not to be real expressive about his feelings. However, what I thought was real good is he did start seeing a counselor to discuss things with, so he's able to use her as a way to get support.

Michael:
I think what you're bringing up is the fact that cancer strikes not just the individual, but cancer strikes the family.

Stuart:
Definitely.

Michael:
So both you and Larry have cancer.

Stuart:
Right, exactly. It's not just the individual. In some ways I feel kind of fortunate. I come from a family of cancer, so it wasn't like someone who didn't have a clue that cancer was likely. Both my parents had cancer. My father died young of it, my mother was a 32-year survivor of breast cancer. So certainly cancer affected me long before it affected me physically.

Michael:
You know, in terms of--these are the issues that people will often think of being mundane, and for patients going through the process, it is anything but mundane--

Stuart:
Um hmm.

Michael:
--and that's your job, finances, and insurance--those issues. Any challenges around that view?

Stuart:
No, I felt so-o-o fortunate. I work in a college of education--about five months before I was diagnosed I switched jobs. I still worked in the same building. As a matter of fact, I moved from one floor to another, but my duties changed. I went from being an admissions officer, advisor, hand-holder, that sort of job, to actually being a practitioner again. I went back to teaching. And so literally I taught one term and then scheduled my surgery. And they were wonderful. I mean here we're talking the third week of the term and suddenly this faculty member isn't going to be teaching this term. They basically said, "Don't worry about it," although no one actually said, "Don't worry about it." But they rallied and found part-timers, they found others to cover my classes. They kept in touch. My faculty union sent me flowers and a reminder that they were there for me. My administration was great about accommodating me. My health insurance--I'll be honest--the thing that really, really, really made a big difference was my primary care physician and his staff. I have an HMO and that's always problematical for most people. Any time I needed a referral, any time I needed a bill resolved--Keesha and Simone were the two women who over the two years have done referrals for my primary care physician--have been phenomenal. She and her colleagues made sure I had the referrals I needed. I was able to get surgeries, a second opinion, radiation, chemo, and didn't have problems. The few times I did have problems I found other helpful people at the cancer institute who provided solutions, so they either did them or told me what I needed to do to solve them. So I feel very, very, very fortunate compared to most people.

Michael:
I think what you're saying--which is so helpful for the listener--is that while these things may appear to be overwhelming, that if you take the initiative and you go out and you work with the people, that people in general will be very supportive and help you get through the process.

Stuart:
Exactly.

Michael:
It sounds like you've got an excellent support system built around you. In terms of ongoing emotional support for you, and also the physical support, Stuart, what helps you the most when you think in terms of your emotional and your physical health?

Stuart:
Currently my cancer team, my primary care physician. What I find ironical is I'm a firm believer in counseling--I'm a counselor by trade. Nevertheless, I've only seen a social worker once during the last two years, but--and I realized I've actually given a lot of this support to myself. What I found helpful, though, is the cancer center I was going to had a social worker. I was able to talk to her once or twice. But they also had massage therapy, and I found that helpful.

Michael:
Um.

Stuart:
I also plugged into Gilda's Club, which is the support group. And there's something about sitting down and talking to other people about what you're going through. Or sometimes I found hearing what someone else is going through is like, "What am I complaining about? I have it easy." So I think the important thing is to try to find as much support in as many places as you can.

Michael:
It also sounds like what you do is you recognize that other than just formal opportunities for counseling, that in everyday interactions there's opportunities to have that same kind of exchange.

Stuart:
Definitely.

Michael:
So you've been able to benefit from that?

Stuart:
Definitely. One thing too is, I've become a lot more of a hugger. There's a time--you know, I work with college students so I can get away with it, but my students have become much more huggy with me. You know, like students who haven't seen me for a while will come up to me and give me a big hug and, "So glad to see you." And I'm starting to encourage that more and more. The physical touch is real helpful. You asked before, and I just realized that I hadn't mentioned it, one of the after-effects of cancer surgery and treatments,-- I started to feel not necessarily undesirable, but I did feel less than desirable, less than sexual, less than appealing. And so physical touch has been real helpful to me.

Michael:
So in terms of some of the perhaps insecurities around your sexuality and your ability to be a sexual being, that the intimacy associated with the hug in itself has helped to bring some of that back. Is that what you're saying?

Stuart:
Definitely. It's a reminder that, "Hey, I'm still physical, I'm still sexual." Sexual is more than just, you know, doing "the dirty deed". It's, you know, it's being hugged, It's being touched. It's feeling like you have a body.

Michael:
Right. The sensual aspect of your being.

Stuart:
Exactly, yeah.

Michael:
There is this question that comes up and, I guess being a cancer survivor myself, it's certainly one I've reflected on, and that's an issue of gifts. Uh, this is a club I think none of us would have petitioned to be a member--

Stuart:
Oh, yeah.

Michael:
--however, once you are there, there are certain gifts of membership that are kind of difficult to explain unless you've been there. Is there any gift, Stuart, that has presented itself to you in this process?

Stuart:
Yes, several. I learned so much from going through this. Of course, I would much have preferred reading the book but I, you know, I probably wouldn't have learned it as well. But I learned--probably if I had to choose a single thing, if you leave yourself open to it, it's incredible how much love and support there is out there. Now that doesn't mean it's always easy, but a lot of times we don't let ourselves receive it. And it's really out there. And another thing I discovered is a great deal about myself. I learned, "Yeah, I'm a tough cookie, but I'm also a positive one." And that's something else I would not have learned unless I went through this.

Michael:
There's been an opportunity for some of those barriers to drop, and in the course of it you've discovered some things that perhaps you didn't know or maybe even you were afraid of, and ended up not to be an enemy but to be a friend.

Stuart:
Yeah. I think that's a good way to phrase it.

Michael:
Again, I could go on for a long time, and I appreciate so much in terms of what you have shared with us.

Larry's Story: The Long Road Back to Health Brings New Joy

Michael:
I'm speaking with Larry today. And Larry is 61 years old, a prostate cancer survivor from Delaware, and he's openly gay. Larry's divorced and he has two adult children, a son and a daughter, 36 and 29 years of age. Hi, Larry.

Larry:
Hi.

Michael:
Now, Larry, according to my notes here, you were diagnosed with prostate cancer in May of 2002 after several years with a rising PSA and four biopsies. You were then treated with external beam radiation and hormone therapy. I want to thank you, Larry, for speaking with me today.

Larry:
You're welcome.

Michael:
I want to get right into it, Larry, in terms of the emotions associated with what happens when somebody tells you that you have cancer. What was it like for you when you were first diagnosed?

Larry:
I think initially I was shocked, and as crazy as it sounds, I also was relieved to get that information, because for me having gone several years with a rising PSA and biopsies, my doctor and I were pretty convinced that something was wrong, and the initial news was not terribly bad, uh, out of twelve cores only one had a small amount of cancer in it. I've learned subsequently that that's kind of the tip of the iceberg, but at that point I was relieved to know that, well finally we knew what was going on. And now we could move ahead with some kind of a treatment. Then you kind of go through a period of being very depressed. And I'm sorry that I didn't learn until way too late for me that it's really a good idea never to go alone when you initially are visiting various specialists. And since I'm single and don't have a partner or didn't even think about taking someone with me, I did go alone. And I remember saying after spending three and a half hours with a radiation oncologist and a chief of urology that I was so overwhelmed that I didn't think I'd remember half of what they said to me. So I've learned subsequently never go alone. Always take someone with you to take notes and that you can talk with later. And I'm now doing that for another man. I'm going with him as he goes to each of these specialists, because he also is alone and has no family living.

Michael:
One of the issues, Larry, is that whole issue of quality medical care. When you initiated your, not only the diagnostic aspects of it, but then got into actual treatment, did you find that difficult in terms of getting quality medical care?

Larry:
I guess there's two things I'd like to share with you about that. One is that I started reading so much. And I, it seems to me that's one of the unique things about prostate cancer is that you really have to inform yourself. You simply have to. And initially I resented that, because I'm a very busy person and I didn't want cancer to be the center thing of my life. I wanted to still live my life but deal with my cancer. And after a couple of months, I realized that wasn't possible--that I was going to have to give in and truly make cancer the center of my life. And I was going to have to read and read, because I was beginning to learn that we have multiple options. And I also learned that I wanted the best treatment possible, and for me that really meant going out of state. And I had to fight with my insurance for three months before I finally got permission to go out of state. And in that time I had filed all of these appeals, had met with several different doctors, two of whom were willing to go with me to an appeals court. So by the time I got the permission I, I on my own decided to get another PSA test, and I was shocked to learn that my PSA had jumped 10 points in that three months that I had fought my insurance. And in my three months with that jump, and then suddenly I had to go on hormone therapy, which can have very serious side effects. And I wouldn't have had to do that if I hadn't had to fight my insurance company.

Michael:
So--

Larry:
My particular treatment, IMRT radiation. I wanted seed implants, but I couldn't have that because my PSA was over 10, and I learned that in five minutes after I went out of state.

Michael:
Let me go ahead and come back to some of those, because what you're saying is so critically important, and I want to make sure we capture it. The, the issue that I'm hearing you say is that it was, uh, difficult, difficult logistically as well as simply digging in through myth, fact and fiction, if you will, to the point where you had to take control of it yourself to go get the information and then work with the professionals around that. You also alluded to insurance, and I want to come back to that. But you also touched on side effects. Let me stop on that one just for a second in terms of the side effects. I'm already sensing there's one that's the frustration aspect of being diagnosed with it. Specifically in terms of the kinds of treatment that you had, what was your treatment, Larry? And what were the emotional and, uh, physical side effects associated with it?

Larry:
One of the major things I could recommend to anyone hearing this interview is you need to seek support from other men. And you can do that two ways, and I've done both. One is to join on-line groups, and at one point I belonged to six. I, uh, the American Cancer Society had three that were important to me--a general one, one just for radiation patients, one for hormone therapy patients. And that's where I learned the most about side effects. If you go on hormones, side effects- -severe osteoporosis is a major one, and I had a wonderful piece of advice from a Canadian professor that was on-line. His area of research is prostate cancer, and he called me one day, because I'm a professor, and he called and said, "What are you doing as far as exercise?" And I said, "Well, I go to the gym three to five times a week." And he asked me specifically what equipment I worked on, and I was proud of what I was doing. And he said, "You're not doing what you need to do to protect your bones." And I said, "What do you mean?" And he said, "You've got to do exercise that is high impact to the skeleton." And since he's a zoologist, I knew he knew what he was talking about. And he told me that I needed to get on the treadmill or I needed to walk in such a way that I had high impact on my skeleton to overcome what the hormones were doing to my body. And the longer you're on hormone therapy, the more severe these become. I personally had serious hot flashes, and unfortunately I waited too long to take the advice of the men on-line that recommended a couple of things for me to take. And unfortunately all of those things take several weeks for those things to kick in, and I finally felt like I didn't have that kind of time, because I couldn't sleep at night. And I got to the point I was like a zombie because of sleep deprivation. And so I finally capitulated and told my radiation oncologist--who had been telling me that he would give me medication, but he understood I wanted to avoid that if I could--and he, I finally sent him an e-mail and said, "OK, send down a prescription." And I filled it, and immediately at least I could sleep. So I'd say that's one. Another is your breasts enlarge if you take hormone therapy. And again, I was really sorry that I couldn't get my breasts radiated until six weeks after I had gone on hormones. The radiation, if you do it before you start, will prevent your breasts enlarging at all. In my case, all it did was stop them enlarging further. And so I worked really hard at the gym to try to make them firm, but they're still significantly larger than they were before. There are other possible hormone side effects, but again, on- line--I would urge any man to get in these on-line groups. Uh, the one I've stayed on is the, is one just for gay men, and I really love that group. Each of these groups has an urologist on it, and one urologist in Atlanta has been wonderful in the gay group about helping us understand medical terminology, helping us understand what a doctor has told us.

Michael:
What is that?

Larry:
There's actually two on Yahoo! and the other one is almost dormant, so I didn't find it useful, but it's called gayprostat, uh, g-a-y-p-r-o-s-t-a-t-c-a, uh, at Yahoo!, at Yahoo! group, so I think one could find it. The American Cancer Society's were good for side effects and they also had a doctor on at least one of them. The other thing I did was to check out two local prostate cancer support groups, and one of them was just wonderful for me. It was those men who also told me, "Don't go alone." And the man that I'm going with right now to his specialist, we met through that prostate cancer support group. But the thing I think is unfortunate is most of us don't go to support groups or seek them is until after we've had treatment.

Michael:
That's actually going to take us into the next question. Let me go ahead and summarize just for a second in terms of the side effects, because in addition to the frustration associated with trying to find the right team and to recognize that you have the responsibility to take the lead role in this, you are experiencing side effects for everything from depression, as I understand it, as well as the concerns with osteoporosis and the breast enlargement.

Larry:
I would like to elaborate on depression. I think for any man, straight or gay, when you learn you have prostate cancer it hits you where you're most vulnerable--your sex life, even your image about yourself. One of the side effects of hormones is my sex organs shrunk. It was embarrassing for me to even undress in the locker room, because I realize I look like somebody just going through puberty. My organs are almost back to normal, but still not quite, and some men tell me they never resume their normal size. You're asking yourself, "Are you sexual?" And, if you're single like I am, "Will any man ever be interested in me again?" The man I'm going with now to help, he's a straight man that's suffering depression because he wants to marry and have children, and he's afraid that the woman he loves--and he hasn't even told her that he has prostate cancer.

Michael:
You're basically talking not only in terms of kinds of side effects that you would traditionally think of, but also side effects around self-esteem, certainly depression that comes from that and how it impacts relationships. You're talking to us about a friend of yours in terms of being heterosexual as well as yours coming from the gay community. Would you elaborate on that for us?

Larry:
Well, when you're single, you begin to have self-doubts that you're going to be worthy of attracting anybody, that they're going to find you a sexual partner, that they're going to find you interesting. It helped me tremendously to finally talk to two men that I met on-line in prostate cancer support groups, that I could ask them questions I was afraid to ask anybody else. And you do have a lot of fears. And in my case, I hit such a bottom I lost all will to live whatsoever. My knowledge of cancer came at the same time as a divorce to a woman that I still love and also the loss of a man that I'd hoped to spend the rest of my life with. And that loss was ultimately he realized he couldn't leave his marriage. And I understand that. But the three things together just pulled the rug out from under me. So I prepared a will, a durable power of attorney, and a durable power of attorney for health care. I told both my kids. My son moved back from Spain to be here with me, which I didn't want, but he wanted to do that to support me through this. So I assure any man listening to this that some of us hit total bottom, and you just think there's no future for you because you're so centered in your sex life. I'm fortunate that I am sexually functional after all of this. And I'm fine now, but I went through a very deep period. And I found even going to a therapist was mildly helpful, but I got so much more help by talking to other men that had been there and had good attitudes. The local support group that I went to, those guys were so positive, laughed and joked, and it was just helpful for me to know that there truly was a positive life after cancer, because I was frustrated that my doctors didn't want to talk to me about quality of life. One of them was just very blunt and said, "I don't deal with quality of life issues. I deal only with your survival." And yet, that was very important to me, "What's my life going to be?" So, having these other men, I can't stress enough, helped, and I have found that prostate cancer really crosses the sexuality barrier, because it really doesn't need to be a heterosexual or a gay person if you're facing, if you can really share and be honest with one another. You can help one another a lot just to realize that the depression and the down periods, they do come with it, and it's wonderful when you have some people you can lean on. But some of us, being single, it's different. I have a good friend that learned he had cancer the same time I did. He came through the whole thing with such a positive view because his partner was there in essence supporting him emotionally and physically in a way that I didn't have. And so, again, these support groups were just--

Michael:
Let me go back to that for a second, because you presented so much information there. The issue around feeling kind of lost and alone, depressed, the sexuality issue, the relationship issue associated with this. And that your advice for somebody-- and particularly talking about another gay man who's going through this process--although the same kind of advice would be appropriate for heterosexual men--is to make sure that you reach out and that you share, and that you develop relationships within the support group. Other kinds of things that you did, and you do to take care of yourself emotionally and physically? Of those things, what helps you the most?

Larry:
Well, I found that exercise really helped me. Another thing that's been a major change in a positive way for me is that I'm a musician. I'm a professor of music and I'm also a professional performer. I have found my performances have completely changed since having cancer. I like to say that my soul now sings when I'm playing, and I have found that I can express my sadness and my melancholia, if you will, through my music. And it isn't a sad thing or an unhealthy thing, it truly gets it out. And I've had such a positive response from others about those positive changes and how suddenly my music-making has really changed. Another thing that's changed, and I'm not quite sure this is answering your question, but it's something that I think men would be interested in hearing, is that my climax, my physical climax, has really changed, and it's much more powerful than it was before prostate cancer. And it's almost like the sensation that you might have had before cancer when a climax is delayed. And that kind of high that you get from a delayed climax, and then when you do, because somehow physically your body's trying to climax, and it takes it a minute, and it's very powerful when you do climax. So I take that as a very positive thing.

Michael:
Do you associate that more physiologically or psychologically?

Larry:
That's a good question, I believe it's a physiology thing. I do believe that's physically-based rather than emotionally. Certainly your, your sex life is different afterwards. Foreplay is very different. You're not as easily aroused as you were before. Erections come less often--awakening in the morning with an erection for me is rare now. I hear from a lot of men that it doesn't happen at all. So you do have a number of physical changes that do have an impact on you.

Michael:
There's so much information and so much value to what you're sharing with us. Given our limited time, I would like to go ahead and, having been through this journey myself as a cancer survivor, and have the blessings of spending time with folks who have gone through this, there are things that occur, as a cancer survivor that tickle us, that are actually quite humorous. And we appreciate the humor. And sometimes those around us, who only think of the dark side of cancer, are uncomfortable or are not comfortable in expressing their humor, but there are some funny things that happen with this. Anything you can share with us that's kind of humorous around your cancer experience?

Larry:
I suppose that what I have found humorous (laughing), I guess it's OK to share these things-- Michael:
Yes.

Larry:
--is I've done a couple of things that I consider outrageous. , and I'm a very responsible, dependable kind of individual that always gets things done and follows through and all those kinds of things. And I have found it really therapeutic for me to sometimes do things that are so totally out of character. I got a tattoo. I'm a kind of person that never would respond to a tattoo, but I got a tattoo. Both of my kids went with me and I found it humorous that, here's father half-naked while somebody's putting a, in my case a Pegasus, because I wanted the idea of soaring and flying upward on my back. And both my kids are standing there, adults, and making comments and observations. And I've done a couple of other things that I don't think I can share exactly with you right now, but it for me was kind of liberating, I guess to say, "I'm living out of the box" and doing things that might be out of character for me or out of character for someone my age. But they've been fun and I've needed some kind of fun.

Michael:
I think that that's exactly what you're doing, is pointing out the fact that, as you go through this journey on this side after the diagnosis, is that the humor is a critically important part of this. I'm going to ask you a question that, for me, is a critical part of this whole process, and that's one that seems a bit strange, or maybe even there's an irony associated with asking the question, but that deals with the strange kind of gifts that are associated with having cancer. These are funny gifts and probably gifts you wouldn't solicit, and they're wrapped strangely, but there are often gifts associated with cancer. For you, Larry, any gifts associated with cancer?

Larry:
Well, I suppose the gift of my music-making improving I can certainly look at as a gift.

Michael:
Improving in what way?

Larry:
Well, my, my performance is so much more expressive. And when I said, "My soul sings", I mean that. One of the other negative things is that somehow this year I've, I who am a very spiritual person, and also a religious person, lost touch with that side of myself through my bitterness, and I'm just reconnecting in a way. It's true that when you're any kind of cancer patient, I suppose becomes very conscious of mortality and quality of life, and each day takes on a certain special existence. But I think I had that anyway because that came to me through the coming-out process. And I just came out nine years ago, so I've only been a single man four years. So a lot of life has been very new to me anyway. Dating is a new thing to me yet, so cancer became yet just another new thing. But I think probably my music-making would be, for me, the most important gift. I do treasure the connections I've made with some other men, but I already had that before cancer because of my work with gay married men. I published an article on that. I've been very active nationally working with men who are married and who are working through sexuality things, so I've been blessed with lots of bonded relationships with other men.

Michael:
All right, if what I'm hearing is in terms of specifics to the cancer is that perhaps it added additional depth to the soul of your creative expression.

Larry:
That's a good way-- a nice way of putting it.

Michael:
can't thank you enough for your compassion and your openness in sharing. What is that one thing you would say to the other guys who are going through what you're going through?

Larry:
Probably it would be don't keep it a secret. Let people know. Reach out. Don't close up and shut down. I've shared already ways that you can reach out. But some men do shut down and some men are not used to sharing inner feelings at all, and that's, that's not unique to being gay. But I would just say to any gay man, "Let others know. It's OK. It's a part of life." And make it as normal as possible, and part of that normality is reaching out and letting everybody else know.

Michael:
Excellent words, and again I want to thank you so much. And for those you, those of you who are listening, I hope these candid conversations have helped you think about some of the cancer-related issues that you may have faced or are facing in your own life. I encourage our listeners and our readers to check out other discussions and personal stories that we have available on our web site at www.cancer.org, and on our toll-free telephone line at 1-877-333-HOPE. Again, that's 1- 877-333-HOPE. And for the American Cancer Society Cancer Survivors Network®, I'm Michael Samuelson wishing each of you a great day today and every day.

Frank's Story: Living Well with HIV and Kaposi's Sarcoma

Michael:
I am speaking with Frank, and Frank is a 51-year-old survivor from the state of Pennsylvania. Hello, Frank

Frank:
Hello, Michael.

Michael:
Frank, according to my notes here, you were originally diagnosed with HIV in late 1982. And in 1996 you spotted a lesion on yourself, which you were familiar with since you had been a caregiver for a former partner with this condition. You were subsequently diagnosed with Kaposi's sarcoma and had about 18 months of chemotherapy. Your KS has been quiet since 1997, and you continue do well on your HIV therapy. Thanks for joining us today, Frank.

Frank:
Yes, Michael. It's my pleasure to join you and share my experiences.

Michael:
Frank, this is a question that is asked of everybody, and everybody's experience is in the genre of the same, and yet so radically different. What was it like for you when you were first diagnosed?

Frank:
I think that for me it was a very quieting period. I withdrew into myself for a period of about two weeks trying to absorb the reality of cancer. And prepare myself psychologically to enter treatment, which I knew would begin with chemotherapy.

Michael:
Frank, when you had those quiet moments when you pulled into yourself, what was the self-talk? What were you saying to yourself?

Frank:
I t was a give and take -- a feeling of some step in the process finally having been arrived at. Having been HIV-positive for a long time and knowing what potential outcomes are the information itself was not shocking or unnerving. I was trying to absorb the fact that I would now myself feel this after having seen and helped other people deal with the same kind of problem.

Michael:
Having gone through that kind of a mental rehearsal in terms of what that moment would be like, what was different? What was unexpected? Certainly there were certain aspects of it that you anticipated from your previous experience, but what surprised you when all of a sudden the words were given that you had cancer?

Frank:
I think in my preparations prior to the diagnosis, because my deliberations had been private, what I had not anticipated or considered is what that would be like to say that out loud to other people, to family and friends, and then begin the medical process of going from an HIV specialist and a, and a caring staff, to an oncology practice and a whole new set of faces. And all of a sudden all that inside dialogue now has an outside voice, an audible voice to it, and that was different for me to have to speak about it out loud.

Michael:
When you did that, Frank, when you left your self-talk and you heard yourself tell somebody else that the diagnosis was in, what was their reaction?

Frank:
Well, their reaction was one of, calmness; almost comforting. I think their reaction helped me realize that they deal with this on a routine basis, and as difficult as it was for me to adjust and accept and move on to the next stage of treatment, I realized how hopeful they were and how much that meant to me.

Michael:
So it was a positive experience for you when you finally spoke it?

Frank:
It was very positive. They weren't the least bit dismissive of what I was saying. They were just very positive and hopeful.

Michael:
Given your experience having been a caregiver and having watched friends go through the same process, was finding quality medical care a challenge? Was that difficult for you?

Frank:
N o, it was not difficult for me. I had been aware of an oncology and hematology practice that had originally been dealing with a lot of HIV patients so I was lucky in that I had already identified them. And in fact, one of the hematologists who used to draw my blood ended up in that practice. So I felt very comfortable approaching them for treatment.

Michael:
So, in your situation, what you're saying is there was a continuity of care?

Frank:
There was a continuity of care, and my HIV specialist--although she had her own network of physicians to whom she could refer--was very comfortable when I suggested someone that I thought I would be comfortable with myself.

Michael:
As you have gone through your chemo, what kind of physical side effects, do you have, Frank? And, and how do you manage them?

Frank:
I went through two courses of treatment while on chemo. T he first one was a phase II clinical trial, and some of the side effects were known, some were not. In the first course of treatment the side effects were rather mild. I did not lose body hair--I lost some body hair, I had some thinning. And because of the unique nature of the chemotherapy drug itself, I retained a lot of liquid--and so I noticed my weight went up about 25 pounds. I'm a little guy--five foot five, about a hundred and fifty pounds, and so that was significant for me .

Michael:
Was there anything you could do for that, Frank? Any of the side effects?

Frank:
One of the things that I did religiously is I was able to schedule my chemotherapy on a Monday, which meant that I could rest up a lot on the weekend prior to it. I would report for my chemotherapy on a Monday. Tuesday when I woke up I tended to be full of energy, so I would go and work out and try to relieve some of the stress of the side effect. By Wednesday, when the combination of drugs--were taking a fuller effect on my body, I would rest. And usually by the end of the week I was back, back to normal. I should add that my course of treatment occurred every 21 days.

Michael:
When you had the swelling, was there anything that you did to kind of control the swelling or minimize it?

Frank:
Well, believe it or not, even though I felt bloated from retaining all this liquid, I drank enormous amounts of spring water.

Michael:
Uh huh.

Frank:
To keep things flowing and flushing.

Michael:
And that was helpful for you?

Frank:
And that was very helpful.

Michael:
You know this is one of those questions that affects everybody who goes through a, a chronic condition, and particularly during the acute phases of it, but how has it affected your relationships with friends, family, and, and other folks, including dating?

Frank:
Well, you know, in an immediate sense some people around me came in very close. I had a chemo friend--she would drive me to and from chemo almost every single time and not wait around in between, because, of course, sometimes it would take six or seven hours. But that was very comforting to know that someone would get me there and home, not knowing if the side effects would be there at all or be severe. Other people I found were, seemed troubled by it and seemed to withdraw. I will share with you and you other--and your listeners-- a story. I was lucky to have a friend who was one of the original kidney transplant patients, and upon my diagnosis with cancer she took me aside at a private moment, and she said to me, "At this point you have to understand that some people will be able to deal with your situation and some people will not. Either way, this is not an expression of their love and their concern for you. It is an expression of what they are capable of dealing with." So that was very empowering for me. So people who withdrew I didn't feel hurt or abandoned by them. I t was more of a gentle release and allowing them to take their own space with that.

Michael:
It was more a reflection of, of their feelings in general, as opposed to anything specifically that dealt with you.

Frank:
Right.

Michael:
In terms of dating, Frank, has it had an impact on intimacy, and your relationships as far as forming partner relationships?

Frank:
I have dated here and there. A t that time I don't know that my dating pattern was any different than it is now, or had been right before. I will say that with Kaposi's sarcoma--because of the lesions that do appear on the body , having had them on my face and predominantly on my legs and arms, and in some internal places inside my mouth, inside my ears-- that got to be a little embarrassing explaining things. And, of course, there's an aspect of HIV that always needs to be remembered. It is a communicable disease, it is transmissible. T hat fact of my life made approaching people in social situations more difficult, because first of all, that disclosure's always important, but it just puts everything right out on the table all at once.

Michael:
So in addition to just feeling the ethical responsibility of disclosing it, it was manifesting itself, and so it presented a question just by being there.

Frank:
Just by being there.

Michael:
You know, that brings around the question of employment and all those issues that have to be dealt with. Has your job, finances, insurance, any of this been an issue for you given your situation?

Frank:
Yes, it has. I have had to adjust myself according to my health needs now. I am back and I am working part-time under the disability rules that Social Security publishes every year. And that has been a journey of finding ways to, first of all, maintain health and a treatment plan that works, and then trying to remain useful and productive as a human being and, working within all of the demands that HIV disease can present. We're speaking today about a cancer, but one of the reasons for the manifestation of the cancer is, of course, first the HIV virus itself, which presents all sorts of problems. Kaposi's sarcoma is only one type of opportunistic infection and I, I'm sure other cancer patients with different varieties of cancers experience opportunistic infections also.

Michael:
The issue, and of course, it brings up for anyone dealing with a chronic condition again, and perhaps more poignantly for an individual with HIV that's now manifesting in a sarcoma what about the emotional and the physical aspects of it? How do you take care of yourself emotionally and physically?

Frank:
I exercise on a routine basis, and by that I mean I will try to go two to four times a week depending on energy, depending upon other responsibilities. I was always a fairly good eater, meaning that I ate natural foods rather than processed foods. I was never much of a drinker, and that certainly helped.

Michael:
Did you find that because of your physical fitness regime, that it helped your chemo in terms of severity dealing with it?

Frank:
Absolutely. As I mentioned earlier, I would schedule my chemos on a Monday, and in nearly twenty months of chemotherapy and one--and then the second drug--I exercised every single Tuesday afterwards. I can't remember missing one, and that really helped push the drug through my bloodstream and take the edge off a lot of the side effects, and make the weak of chemotherapy very bearable. In the second and third week following the week of treatment, of course there were still some mild side effects, but they were very much decreased by, by the exercise.

Michael:
So the exercise was helpful not only physically, but also mentally.

Frank:
Absolutely.

Michael:
This, this is one of those things I think you have to be part of the cancer community to sometimes even respect and appreciate this, but for all of us, without a sense of humor it's difficult to get through some of the days. Anything in particular occur to you that you found to be, uh, funny or amusing associated with--

Frank:
Oh, yes, there were amusing experiences. On the second course of treatment the drug was more severe. It was also more effective, and I lost all my body hair, head, eyebrows, eyelashes, the--everything. And I used to refer to myself as, "Gosh! I look like an 11-year-old." And I noticed it working out at the gymnasium, it was a little embarrassing, so I would work out but not shower at the gym, and I used to refer to myself as, "Well, I just think of myself as an older egg." When, when people would look at me--now if you look from the knees down where I had probably a hundred KS lesions on my right leg and about 50 on my left leg--and people would look and feel embarrassed, I would say, "It's OK. It's OK with me, so you can allow it to be OK with you." And if all of this fails, then I'll just wear long pants. I would try to make other people feel comfortable.

Michael:
So you would go ahead and take the initiative of recognizing that perhaps somebody was uncomfortable, not meaning to be unkind, but they were uncomfortable and they were presenting it, so you would take the lead and try and to dissipate some of that?

Frank:
Exactly. If I were standing in a situation where someone was looking, I would say, "Yeah, I know. All my hair's gone, but it's OK." And they would either giggle with me or, you know, move on to the next part of the conversation.

Michael:
My guess is that would make you feel more comfortable as well.

Frank:
Well, I felt like I was in a way that was not overpowering anybody else but empowering myself. I was staying in control of the situation.

Michael:
By taking the lead on it.

Frank:
By taking the lead.

Michael:
You know this is a question that again, I respectfully ask, and I just celebrated my four-year anniversary as well, and having been through this-- and it's a question that I can ask at a certain juncture, and that deals with the gifts of cancer. And if I can use that word, have there been any gifts associated with your HIV and now with the manifestation of your sarcoma?

Frank:
Yes, I believe there have been gifts with that. I believe that it has made me remain focused on what's really important and be of assistance to other people who are in the same situation. I know that more so while on chemo, less now, but it still persists, is a feeling of urgency going through a day and trying to remain focused on what's really important and urgent, and what needs to be accomplished, and then taking some time to enjoy just relaxing and meditating and whatever other forms of personal prayer can occur to make you feel good.

Michael:
I've heard other people express it as kind of a fine tuning, or a focusing again on those things that are truly important, allowing for blurring of those things that we used to think were important that are pretty much incidental, is that what I'm hearing you say?

Frank:
Yes, yes. You really begin to pare away the things that are not important, and you begin to experience--at least for me--I experienced people differently. It was much easier to overlook the superfluous, to overlook the unimportant and just keep moving towards what felt better, what felt more affirming.

Michael:
Frank, kind of a, a pulling it together question as we close on this. If there's one thing you could say to other men who might be going through a similar experience right now, what would that be?

Frank:
To always trust your instincts and trust your thoughts. To listen to your body, listen to your heart, listen to your soul. I found through my experience it was usually telling me something, and what it was telling me was usually accurate. And it's a blessing when you can relax enough just to listen to yourself in those ways. I really believe that that forms a foundation from which you can remain healthy during chemo and after chemo.

Michael:
Oh, that's extremely valuable and such an important message for people, to be quiet and to truly listen and listen to your gut, listen to your heart, listen to your instincts. I appreciate that. Frank, there's so much more you can offer and so much more time I wish we had with this, but I want to thank you so much for sharing your insights, sharing your experience, being comfortable enough to do it, being compassionate enough to do it, because after all that's what this journey is all about.

I hope that these candid conversations have helped you think about your own experience with cancer in positive ways. My sincere thanks to Frank and to each of our guests for sharing a part of themselves and their special wisdom with us today. I encourage our listeners and our readers to check out the other discussions and personal stories available on our web site at www.cancer.org. Again, that's www.cancer.org, and on our toll-free telephone line at 1-877-333-HOPE. Again, that's 1-877-333-HOPE. And for the American Cancer Society's Cancer Survivors Network ® , I'm Michael Samuelson, wishing you a great day today and every day.

Help |  About CSN  | Legal & Privacy Information