Greg: Offering Hope to 'Sun Lovers'

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My name is Greg, and I am telling you my personal story because I want everyone to know that you can beat melanoma. I have melanoma, and you can beat it; and not just early stages of melanoma but the late stages of melanoma as well. And really, I really want the people that are newly diagnosed to be able to find survivor stories. I couldn't find them when I was diagnosed and I really looked hard for them, and I am a cancer survivor. By the way, melanoma is a skin cancer and brought about mainly, primarily due to the sun.

As a kid and as an adult I loved the sun. Even though coming from an Italian family, I have fair complected skin. I absolutely loved the sun and I sunbathed all the time. I laid out at the pool and I went to sun tanning salons later on. My vacations were pretty much on the beaches. As a child, I ran around like most kids, without a shirt and playing baseball out in the sun. I got lots of sunburns. I didn't tan much. [laughs] I mostly burned, and it peeled, and I tanned again, and eventually maybe I got suntanned. But I was the classic person, I suppose, to have gotten melanoma. As I said, I loved the sun, and I still do. My mother ended up passing away from leukemia and my father from liver cancer, so I have cancer in my background. Again, loving the sun, it was just that I was a prime candidate.

Discovery and Diagnosis

At age 37, I saw on my upper right arm, one of my moles that was kind of developing a black kind of a border along the bottom of it, along the edge of it. I knew that was a bit strange and not normal, but being a typical guy, I really didn't go to the doctor or do anything about it. I was having a physical examination and my doctor saw that, and he said, "You know, you really need to check that out." There was something about the way he said it that prompted me to feel the importance of going in and getting it checked out.

So I went and saw a dermatologist, and he performed a biopsy, a punch biopsy of the mole. I asked him, did it look bad or anything like that, or serious. He really didn't give me any kind of a clue. He just said that they were going to biopsy it. Before I was supposed to return to his office for the follow-up, he called my house and asked me to come in. Of course, you know, [laughs] that kind of gives you a bad feeling. When I went in there he told me that I had melanoma and that it was invasive nodular melanoma, which if I understand correctly, it's the worst, or at least one of the worst types of melanoma.

I kind of thought at that time, "Well, no big deal. It's skin cancer. Cut it off and let's go on." I must have said something like that to him, because he made it quite clear that, no, this is quite serious, and it still didn't sink in. But he went ahead and he made an appointment for me to see a surgeon who specialized in melanoma.

Becoming an Informed Patient

In the meantime, most people are probably this way, I know I am, I wanted to learn more about what he said I had. So I tried to read everything I could possibly find on it, and I think the biggest place that I found the most information, and still do, is on the Internet. Of course, you have to be careful what sources you read from. I got some information from the dermatologist, and I called the American Cancer Society and got some information sent from them. I called every society I could possibly think of and had information sent to me.

I tried to read as much as I could, but the more I read it just seemed to get worse. Nothing seemed positive out of it. I tried to look for stories of survivors, and I thought, "Well, if this is so negative, let me at least find someone that survived or people to give me, you know, kind of hope." I was starting to get kind of gloomy, from everything that I was reading. I looked for stories of survivors and I found none. It really bothered me.

Actually, I did find one. It was kind of a diary of a young guy. It sounded as though some of the things that he was describing sounded really bad, I mean pretty advanced. Yet he had this kind of cavalier attitude, and he was surviving. He wasn't even doing some of the things that I had read that you were supposed to do. So I was reading along, and it was kind of day #1, day #2, day #3 of his story, and it seemed very positive, and all of a sudden that story just dropped off. There was no ending, and so maybe I was wrong, but I concluded that he must not have made it. So, bottom line, I never found any stories of survivors, and that was hard. And that's, again, that's really one of the main reasons why I wanted to give my story.

Preparation, Surgery, and Prognosis

Well, the dermatologist had made an appointment for the surgeon, and I went to see him. And by the way, in case he ever hears this or reads it [laughs], he was an excellent surgeon. I think very, very highly of him. I really mean that. And he did a wide excision of the mole just to get good borders, clean borders around the mole. I went for an office visit and he explained to me what he was going to do. Ultimately, I went into the hospital for the removal. He was also going to, at that time, remove the sentinel lymph node, which is the main lymph node closest to the tumor.

When preparing for the surgery, I told him I wanted to know right away after the surgery if he found cancer in that sentinel lymph node and if it had spread from the mole to that node. He said that I would have to wait approximately two weeks to know for sure, and I didn't quite understand that. I thought, "Well, gosh, you're in there. Doesn't cancer look a certain way? Doesn't it look dark or black or funny or something? Can't you tell me something?" And he told me that there was a test, I think he said it was a quick freeze or frozen biopsy, or something like that, that could be done at the time, but that it only had 96% accuracy. Well, I kind of chuckled, and being a mathematician myself, I said, "96% accuracy? I'll take that!" But he did say that two weeks after, there would be the complete lab results.

So, I went ahead and of course, had the surgery. He told my family that it had come out and it looked really good. That the quick frozen biopsy had shown that I did not have any melanoma in that sentinel lymph node. But I think the way it works is they cut the node in half, and they do this quick freeze exam on one half and they send the other half for the full lab results. And so, of course, hearing that, my family was elated. And of course, I was extremely happy as well.

So, I'm kind of a realist-type person. I try to think best-case/worst-case scenarios, and best-case is always wonderful and worst-case, you have to prepare for. So I thought about the worst-case scenario, that when I went in that there was a possibility that I could have melanoma, but I thought, "Hey 4%?" [laughs]. "I'm not going to spend much time ... I'm going to spend about 4% of the time thinking that it could be a bad situation!"

So I went in two weeks later, and he said, "Greg, you are one of the 4%. You do have melanoma and it was down in your sentinel lymph node." So I was kind of surprised, and I promised myself from my earlier visit when I went in to see him, just to talk about it--Having seen people inside, not in the original waiting room, but inside having--must have been told that they had cancer. They were just so horrified some of the faces I saw on some of these people. And I promised myself that I wouldn't be that way if I did get told that I had cancer. And so when he told me, I think I was just like I said. I was just kind of surprised. And I said, "Okay, what do we do?" And he said that they needed to go in and check the next lymph nodes.

Second Surgery and the Fear of Waiting

So, of course, I was ready to do it. I said, "Okay, let's do it." [laughs] I was ready to do it then. And he kind of chuckled, and he said that they would have to set up a surgery date. So they did and it was several weeks out. Apparently there wasn't an operating room open that he could get at the time that he was available, and it was several weeks out and that just horrified me. I thought, "If I've got cancer in me and it's growing, I've got to get it out of me. Please, you know, take it out!"

Well, being such a kind man he was, bottom line, he said that it shouldn't make a difference to have to wait a few weeks. I took that thinking that, well, it could mean good news--that it won't make a difference and I'll be in good shape, or bad news--it doesn't matter if I wait because it's still a dismal outlook. Well, you try to be positive of course, but my girlfriend, seeing how much it was bothering me, she called my surgeon and said, "Can't you do something do move the date up?"

He was such a kind man, as I said, that he went ahead and he rescheduled all his appointments. He actually came in on the day that he would not normally perform surgery and he set the surgery just for me. Before having done that, that day was Friday the 13th, he asked, "Are you superstitious?" And I said, "Well, when it comes to this--absolutely not. Let's do it!"

So, it's Friday the 13th, and it was interesting because it was the first time in my life that I actually had a decision that was a life or death situation decision. When I walked up and was checking myself in, it struck me that "Yes, you can decide to say no". But it was a really powerful thing, because it seemed to me that if I said "no", it would surely be death, and it was such a moving feeling.

So I went ahead, and of course I checked myself in and sat and waited, and of course my girlfriend was with me. I walked down and went into the surgery operating room and had the surgery. Well, as I said, it was Friday the 13th. They removed the next set of lymph nodes for a couple of reasons; to see if #1 it was in the lymph nodes and #2, also hopefully try to prevent it from spreading through that packet. Ironically, when they removed the next packet of lymph nodes, there were thirteen lymph nodes within that packet of nodes. So, it was kind of strange. It was Friday the 13th and they removed thirteen lymph nodes and all of them were clean. So, Friday the 13th had now a good meaning for me.

Good News Mixed with Uncertainty

So, as I said, they were all clean. I have been told that since it had been found in my sentinel lymph node that it didn't necessarily mean that I was safe from having tumors reoccur, that tumors could still reoccur. And I asked why, and it was kind of explained to me in an interesting fashion. Someone had said to me that when you have a tumor, pieces, microscopic pieces, fall off, and it's kind of like gravel rolling down to the river. That as gravel rolls down to the river, some of it just rolls on down the stream, and others fall into pockets within that river and form... kind of fill up and form a big kind of cluster. And while some particles or some pieces of gravel would flow all the way through, some would not. That was the case like melanoma, that particles would flow all the way through, but some could possibly get caught in lymph nodes and form tumors. So, hopefully, by removing those lymph nodes, that would prevent that from happening but it couldn't be assured.

So, I of course wanted to be proactive. I didn't want to be reactive and wait for something to happen. The last thing I wanted to hear was that I had a tumor in my liver or my brain or lungs and that now at stage IV. I would feel that if I had only done something that maybe I could have prevented it. So I definitely wanted to do something proactive to try to prevent it from happening. At the time they had found that there was no chemo that was showing success. No radiation, no vaccines, no immune therapy--nothing. Nothing was showing any signs of success, but yet, I still wanted to be proactive.

Being Proactive--Exploring Clinical Trails

I felt like I needed to do something. Because if I hadn't tried something, I just couldn't bear knowing that I could have that feeling that, if I had only done something I wouldn't be in this situation. So I discussed options with my oncologist, options of clinical trials that were available at the time, and so I decided to do a clinical trial. Of course, I waited the full 90 days that most of them allow you to wait. That means 90 days since the tumor was removed, because, I just was scared to do it. The clinical trial was Interferon versus a vaccine, and having read about Interferon, I didn't want to take Interferon. It sounded horrible and I just procrastinated, and it came to my 90 days and I felt like I had to do something. I'm definitely going to do something. I'm going to do it.

So I signed up. I went through all the clinical trial papers, and I signed them. I was scared, but I was going to go through with it. So when you sign up for a clinical trial, you have to qualify for it. You have to be within the proper measures. It's kind of like an A-B split where half the people get this, and half the people get that, but everyone has to be similar so that the results are accurate. I needed to fall within certain measures. In testing for the clinical trial, they found through a CAT scan, that I had spots in my chest. So, it now appeared that not only did I have a nest of melanoma in my sentinel lymph node in my underarm, but, now I had spots in my chest. It appeared I was now a stage IV.

Further Complications, Tests and Decisions

Of course, that was upsetting, and having read about stage IV, it wasn't a positive thing. We wanted to be able to prove maybe that those spots were not cancer. I knew that I had what was called a granuloma in my right lung. I had found that out through a previous x-ray on a shoulder injury, so I knew that one of those spots was a granuloma. So we tried to rule those spots out, and we did that by having a PET scan. The PET scan should have shown glowing bubbles, spots where the cancer was, and hopefully it would show no glowing spots. Well, after having that PET scan, the results showed about 150 to 200 glowing bubbles. Gee, I freaked! [laughing] 150 glowing bubbles! What does that mean?

Well, my oncologist said not to worry, that was indicative of a false reading, and that the other way to rule it out would be through a biopsy of those spots. Unfortunately, the two that were of greatest concern were in the center of my chest, not my lungs and were wrapped up in arteries and veins attached to lymph nodes, and that a biopsy of those would be life-threatening. I spoke to my surgeon, and he said that he thought he could do it, but he really didn't want to do it unless we absolutely needed to. He agreed that it was a very serious and possibly life-threatening surgery.

A collective decision to watch and wait

Well, we all pretty much agreed that that wasn't the thing to do, and that I should wait and just see if they grew. So, I couldn't prove that I was still a stage III. I was possibly a stage IV, and therefore I was not allowed to go into the trial. And of course, that upset me greatly, but that's just the way it was. What we needed to do was to be very vigilant and watch those spots very closely and not only watch the spots, but that I should do self-exams of all my lymph nodes and look for any changes.

Well, I did that and I also had x-rays and lab work done every six weeks and CAT scans every 90 days, and the oncologist was wonderful. He told me that anything that seemed out of the ordinary to call him and that we would check it. As I said, I have a wonderful oncologist. Any time that something was out of the ordinary--that went past the norm of what it should be; for example, if you have a cold and it lasts for so many days and it doesn't go away, or if you have anything that was out of the norm--that I should let him know. He had me come in several times and we checked it out, and ultimately nothing came from that thing.

For about a year and a half we watched the spots with x-rays and CAT scans, and there was no change. Everyone thought that it was fantastic, that it must be something else. That it was probably other granulomas, or scarring from my previous surgeries, or something called histoplasmosis, some kind of another disease or thing. [laughs] I'm not quite sure, but ultimately there was no change and so everyone was just thrilled.

Change for the Better--'Spots' Shrink

But then there was a change, and it was about a year and a half after looking at those spots. The spots did change. They had become active, but they became active in a great way. Some of the spots actually shrank. They decreased in size, so I was thrilled. I thought, "My goodness! That's great news!" But then I thought about it, and I thought, "Well, I didn't think that granulomas or scarring could shrink." So I got nervous and I asked my oncologist, "Hey, scars don't shrink, do they? Granulomas don't shrink, do they?" And he was very reassuring. He said, "You know, Greg, we really don't know anything more than we originally did. We don't know that you have melanoma, and the spots are not growing. And we really don't think that you have melanoma."

So, all this time later and today those spots have just shrunk. My melanoma, that was in my arm, and then in the sentinel lymph node in my underarm, and possible the melanoma that was in my chest has not reoccurred, has not grown, and nothing has changed. It's been a few years now. I am still a person that was stage III or possibly stage IV. I've gone several years now and nothing has reoccurred. So, I want to say that for anyone that has melanoma, stage I, II, III or IV, there is hope. Because I am a cancer survivor with stage III, or possibly stage IV melanoma.

The Things That Helped Me Through It

I want to tell you some of the things that helped me get through the difficult times, because they were difficult. I think anyone that gets told they have cancer is probably horrified--is probably in shock. I think when people think cancer, they think, "Oh my God, I'm going to die!"

Some of the things that really helped me were laughter. Laughter was huge. I think that any way that a person can find a way to laugh, it's so helpful. Yes, you're scared, and yes, you're worried but you have to find a way to not dwell on it and not think about it all the time. I went to comedy shops. I went to stand up comedy places where I could hear funny things and I could laugh.

I got as much information about the disease as possible. I read and I read and I read, because fear basically comes from the lack of knowledge, and if you can understand something, most of the time you lose your fear. I prayed a lot. You know, I don't know anyone's religious beliefs, but I prayed a lot and people prayed for me, and I truly believe that that helps so much. And I had great love and support of my family and friends. I have a wonderful girlfriend that was just my pilar of strength. She helped me immensely. I mean immensely! And of course, I had a great oncologist. I have a great oncologist and a set of doctors that are very reassuring and are tremendously helpful.

But I also have found that helping others is really helpful. It's given me such a great feeling that I have helped people by using the knowledge that I have gained with melanoma. I have helped people to try to understand where to go to get information. I have spoken to parents that have children, to try to keep them from being out in the sun. I have done a lot of things to help people. That's made me feel really good about myself and about helping others. And you know, maybe [laughing] it helps me get into Heaven too, I don't know! And I think over time you feel better. The more time that goes by, I think the better you feel.

The Life Lessons I have Learned

I think that I have learned a lot. I think that I have learned throughout all this time period that you really have to enjoy each day. And I know that sounds trite, and people say, "Oh yeah, enjoy every day." And how do you do that? Well, I would think about that and I would consciously try to think about the things that I was doing that day, and what if it was the last time I could ever do that? What if this person I never saw again? And it really made me think about those things and those people. I learned to appreciate every person, and I learned to appreciate everything I did. [laughs] And I know it sounds funny, but I truly would smell flowers, and I truly would look at blades of grass, and look at each one as they would kind of wave in the wind. I would look at trees and I would smell the smells. Because each day I would try to think about it, what if this were my last day? And it made me appreciate things.

I would go to malls, and it was Christmas-time, and I thought about what if this was my last Christmas? I would watch the kids sit on Santa's lap. And I'd see the kids that would smile and laugh, and tell Santa what they wanted, and it gave me such a sense of joy. And I'd see the poor little ones that would cry, and it just made me so sad. I'd see the faces of the children playing. I just took every day and I tried to think about everything about it and learn to enjoy things. I work everyday and before I go into work, I look around, and I see, and I smell, and I think, "Isn't this beautiful?" And, it really is. And I know that every day now, even when it rains, is wonderful.

So, I know it sounds silly, but I have learned to appreciate things. I have learned not to let little things bother me. There are so much bigger things in life than letting the little things irritate you and bother you. And it's really helped me a lot. I think that those are the things that have helped me get by when it was difficult and those are the things that I try to teach people.

Spreading the News About Melanoma

I try, especially with melanoma, to tell parents and kids just to be sun-smart. And you know, I don't think you can teach people to stay out of the sun. They won't. You couldn't have told me that. I know that I knew about sunscreen. I didn't use it. I thought that was stupid. I thought I wanted a suntan. I'm not going to use a sunblock. But I'm a person like they are, that when they see it happened to me, and I'm their age or I'm just like them, I think it sinks in a little bit. I think when they see the scars on my body, it makes a little bit of sense to them.

I have gone to health fairs, and I have put up posters. You know, you see these before and after posters, and it looks horrible, but people just walk past. What I have seen really helps, are the really disgusting posters of tumors and things that have shock value. Because it really gets people's attention, and when it gets people's attention, they ask questions or they say, "Ooo, what's that?" And then you can explain, and people say, "I never knew that skin cancer could do that."

And all those things of working with people and talking with people have really helped me--have helped me a lot. But, I guess, all I'm really trying to say is that throughout this time period I was afraid and I wasn't sure if I was going to make it. But I have, and I'm doing great and it's been years now. I just want there to be a story out there. I want people to know that you can make it and there are many survivors out there. I'm one of them, and there are so many others. We just maybe don't hear their stories--but they're out there.

Offering hope and a Helping Hand

So, have hope. Do whatever it takes to laugh and get information, and just know there are many survivors and you can be one, too. And if you're interested in ever speaking to me or contacting me, my e-mail address is on my website, out there on the Cancer Survivors Network. I'm certainly willing to speak to people through e-mail, because I know what it's like to be fearful. I know what it's like not to have anyone to talk to. I know what it's like to not be able to speak to your family because they want you to be well. They don't want to hear about your fears and maybe talk about the horrible things that you might be thinking about. So I understand. I, too, have walked in your shoes, and I think that's what it takes--is to talk to someone just like you who has walked in your shoes. Not someone who thinks they know or not someone that's had maybe even a different type of cancer. I have had melanoma. I've had a later stage of melanoma, and I can relate. You can survive, and I just want you to know that.

So I hope my story is helpful. I wish that I had heard a story like this, because it would have given me hope, and I hope that it helps you. And again, if there is anything that you ever want to talk about or contact me through e-mail, please feel free to do so. I would like to do that.

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