Episode 6 - Tim Scott - Irvine, California - USA - Survivor - Ocular Melanoma and Non-Hodgkin Lymphoma
|Posted on 3 June, 2020 at 4:00|
Bruce Morton: Hello and welcome to the Cancer Interviews podcast. I’m your host, Bruce Morton, and on this segment, we have a guest with a compelling story to tell. He is Tim Scott of Irvine, California. He beat ocular melanoma and then non-Hodgkin lymphoma. We hope you will find his story informative and inspirational. Now, here he is. Tim, welcome to Cancer Interviews.
Tim Scott: Thank you for having me, Bruce.
BM: Tim, we’d like to start off by getting to know you better. So if you would, tell us where you’re from, what you do for a living and what you like to do with your leisure time.
TS: Well, I am from Eugene, Oregon, Tracktown. Grew up there, went to Sheldon High School, then University of Oregon, played on the golf team there. Tried to make the PGA tour, didn’t quite get there, then got into the golf business after that for about a dozen years, working at a couple courses in Portland, then wanted to do something different. I always enjoyed teaching golf, and ended up going back to school, got my MAT from Pacific University in Oregon and became a teacher, a public school teacher for almost 15 years. That was all in Oregon, in Central Oregon, lived in Bend for quite a while. Then we moved down to California, my wife and I. Most of her business was in the Bay Area, so we moved there in 2012, and then in 2019, we moved to Southern California, for another opportunity that she has. I am athletic, was a competitive runner, was a golf pro, don’t play much golf anymore, but I play speed golf, I’ve played speed golf for years, and I like the outdoors and outdoor things. I am signed up for an Ironman Triathlon. That’s about it. I have three kids, two went to the University of Oregon, one lives in Oregon, the other in the Bay Area, and an eleven-year-old son that is here with us.
BM: Well, Tim, I have to tell you from personal experience, there are plenty of native Californians who have ended up in Oregon. Not quite as many native Oregonians that move to California. Do you like being in Southern California?
TS: I gotta tell ya. We never thought we had to live in California. But here we are, and quite frankly, we’re kinda lovin’ it, so, yeah, we didn’t see that comin’.
BM: Now there was a time when cancer was the farthest thing from your mind. Describe if you would, what life was like before you first diagnosed.
TS: The timing was incredible. It was 2012. I had finally gotten the golf clubs back. I was 48 years old, and I thought, you know what? I am going to try to make the Champions Tour. So in the fall of 2011, I started getting lessons from a buddy of mine, I all set to stop teaching at the end of the 2012 school year, we were going to move to Phoenix, and literally, the day before I was diagnosed, the next day, my wife was flying down to Phoenix to put an offer on the house. We were going to move to Phoenix, but on April 19, 2012, that was when I was diagnosed.
BM: Because everybody’s cancer journey is a little different, sometimes people have some sort of warning that a diagnosis could be coming. It sounds like for you, it was rather sudden.
TS: Farthest thing from my mind. I started to, in my right eye, and I don’t know if it was six months before or four months before that, I started to notice if I closed my eye, there was this gray area in the corner. No big deal, I thought, I am getting older and my vision is probably goin’, but as time went on, I noticed, this gray area was getting more and more into my vision. I thought I better get this checked out, I don’t know what it is. So that day before, on April 18, I went into an optometrist. He did some tests and told me he was going to call an ophthalmologist doctor to come over and see me, and he meant “right now”. I thought that was kinda weird. Well, she wasn’t able to come over, but he made an appointment for me to see her the next morning at 10:00. My first reaction was, “I’m a teacher. I can’t miss two days in a row.” But he said I had to go, so I went to this office in Redmond (Oregon), that I’d never been to. My optometrist thought I might have a torn retina, and I heard the ophthalmologist in another room talking to another doctor about a torn retina. And there’s things you have to do, you have to sleep sitting up, and I really hoped I didn’t have a torn retina. Then she came in, looked at my stuff and said I have a type of cancer, ocular melanoma. I really don’t remember what she said after that, but I do remember thinking I had no idea that you could get cancer in your eye. So it was just complete shock, outta left field.
BM: This is a type of cancer that might not be as well known as others, so how did that diagnosis manifest itself? Could you not see out of that eye, were you in great pain, physical pain?
TS: There’s no pain, but the gray thing growing into my vision was the tumor growing. That’s what it was, into my line of sight. So this was really lucky, because if it doesn’t grow into your line of sight, there’s no pain, no other symptoms. It would just grow and grow and grow, until it’s in your vision, I guess. But mine was in my vision, and that’s why I got it checked out. I got there about 10:00, got home about 10:30, it’s about 20 minutes home. Lori was in the Bay Area was working, Shilo, our three-year-old son, was at daycare, and I was in shock. I went on the Internet and looked up ocular melanoma, as I had no clue what it was. It was just ugly. So I called back because the information kept referring to a small tumor, medium tumor, large tumor, and the statistics on that. So I called back to the doctor, and asked if mine was the small, medium or large tumor? She said “large”, and I am looking at these stats and I am thinking, “Wow. This is not good at all.” So I called Lori, she was in the Bay Area and coming home that night anyhow, and I was thinking how I was going to tell her. So, it was tough.
BM: Were you given a range, a best case scenario and a worst case scenario, and if so, what were they?
TS: Not really. This is how rare it is. She had been in practice as an ophthalmologist for 15 years and had never seen this. The optometrist had been in business 40 years, I think, and neither of them had ever seen it. They’d heard of it, but had never seen it. What the information said about it online, with a large tumor, at about five years, there is a 40 percent chance of survival, and at ten years, about 30 percent. The ways to treat it include taking the eye out, or they can treat one of two ways with radiation. One is with radiation pellets, in which you wear a mask and they shoot ‘em into your eyes. I didn’t do that, I didn’t want the mask and I am claustrophobic. The other way is called brachytherapy and what they do is they take a dime-sized thing and put radiation pellets on it. They put you out and basically twist your eye around, they put this radiation thing on your eye and leave it on five days. You’re all patched up, you are radioactive, you are not supposed to be around people, and then after five days, they take it out. I did it at the KCI Institute in Portland.
BM: You said there was no pain at the outset. But what about the treatment? Was there any sort of pain that accompanied that?
TS: You know, it wasn’t too bad after they put the pellets in and I woke up, but by Day Four, I wearing this SOS pad, and it wasn’t pain, it was just this scratchy kind of feeling. So they took it out and you’re swollen up for three or four weeks, but it wasn’t that big a deal. I basically cannot see out of my right eye. I can see just a little bit of the corner of my right eye, but that’s it. And I lost depth perception. You don’t realize it until you don’t have it. There are still a few things that I struggle with on depth perception. In terms of treatment, they give you a PET scan, too, to see if it has metastasized. What I found out after researching it some more is that there are three types of tumors, 1-A, 1-B and 2. They classify it through the genetic material. The Class 1-A tumors have a survival rate of about 95 percent. It’s great. The 1-B tumors have a survival rate of about 80 percent. The Class 2 tumors have a survival rate of about 30 percent. My tumor was Class 1-B. So when I got that call, I was hoping they weren’t saying Class 2, please be 1-A, because Class 2 numbers just aren’t good. So I was 1-B, which was way better than it could have been.
BM: So, if you didn’t use of that eye, I am guessing there were a number of things you couldn’t do, one of them being that of driving a car.
TS: Well, I’m drivin’ a car. I do have to get a special license, and do a couple extra things when they test, but I have to do them to pass. So I have the blind spot, so I always have to be actively looking, but I have always been active, and now I have to be because I have a blind spot. Every once in a while, there will be somebody or something, and I just won’t see it, so that happens occasionally, but more with people than when I am driving.
BM: You had mentioned at the outset your quest for information, but outside of your health care team, was there anybody who gave you sage advice during this process?
TS: Not the first month and a half, because it’s rare, nobody’s had it, nobody’s heard of it. So what I did find was a conference, an ocular melanoma conference in Philadelphia in June, after being diagnosed in April and undergoing the procedure in May. I learned a lot there, and I discovered a Facebook page for ocular melanoma survivors and learned a lot on that. What I found out was there is the genetic piece. What I initially learned online turned out to be not that accurate. It was dated and there is now way better information. If you googled ‘ocular melanoma’ today, I don’t know what you would get, but in 2012, there was some dated information, and it was pretty scary.
BM: With the passage of time, you got the upper hand on this. How did that feel physically and emotionally?
TS: Physically, I was fine in a week or two after they took the patch off. I didn’t go back to teaching until three weeks after that. I felt pretty good, I was fatigued, probably from the radiation, but I didn’t hurt. I had a sponsor, someone to sponsor my shot at the Champions Tour, and even though I had lost of my vision in one eye, they stood behind me, so I thought I’d give it a shot. I had an eye patch over one eye and just played with one eye. So I was back playing in late May or early June, and I was pretty much back to normal. If ocular melanoma metastasizes, about 90 percent of the time it goes to the liver, so it’s no good because there is no cure; but if it doesn’t, you have lost your eyesight and that’s it.
BM: I’ve never played golf, but I am a former runner, and I am thinking if you’re a runner and you’re out there on a trail, or you’re running competitively, running with one eye would be no picnic.
TS: It’s not that bad. I just keep my head on a swivel, I try to be aware of my surroundings. That part is not that bad. The worst part was with the undulating greens and the lack of depth perception. That part of my game just never came back.
BM: Meanwhile as we move along, your health sadly took a turn for the worse. Tell us what happened next.
TS: Totally different. Ocular melanoma by the end of June 2012, my eye was pretty much gone, but I felt fine. That was pretty much over. I do surveillance; CT scans every six months to make the cancer hasn’t anywhere. Then around Thanksgiving 2015, I started getting this pain in my lower back. It was nothing, I thought. I am throwing the ball with my kid, and still running. But it just kind of got worse and more painful and a little more widespread, pretty quickly. Within a week I am taking Advil twice a day, and within two weeks, I was taking four Advil every four hours. I didn’t know what was going on and so I went in to urgent care. They told me they could see me in six days, and I said I have got to do something about this now. So I got some painkillers that worked a little bit better, but not really. Then one night I just couldn’t sleep and I just had to go to the emergency room to find out what this is. So I went in there and they did a CT scan, which revealed nothing wrong. Well, that’s good, I guess, but there is something in there, something’s happening inside my body here. That was on a Saturday. On Monday I called my ocular melanoma specialist and said I have this incredible pain near my liver. So he got me in on Wednesday, the day before Thanksgiving, and he said he was going to schedule me as soon as he could for a PET scan. So on the Monday after Thanksgiving, I was scheduled to go in, but until then I was just living on Advil. I got in there on Monday for a PET scan and I just couldn’t do it. They put this liquid in your body for about 45 minutes, then they put you in this machine and it takes about an hour to do your whole body, but I couldn’t do it because of the claustrophobia. So they did a CT scan instead, and here we are driving home from UCSF and 30 minutes later while I am in the car, and they said they saw nothing wrong. So now I have two CT scans that don’t show anything, and I am in intense pain. So the next morning I am at home doin’ whatever I’m doin’ and I get another from UCSF and it was the doctor from the day before, and he said, after re-examining, they said they had found a tumor. It was actually an enlarged lymph node is what they said. It was right under my belly button, but the pain was in my lower back, which is where they had been looking. I asked them if it was cancer, and they said, yeah, it was cancer, and I thought, “Oh, my God. Here we go again.” So that was the start of that one.
BM: I can’t imagine what it would be like to get this bad news twice, and I would think emotionally, mentally, that would put you at a crossroads. Either getting this bad news a second time could make you crumble, because you have already gone through this once, or after going through this a first time resulting in your redoubling your resolve?
TS: I think both, and it was so different. I had no pain the first time with the ocular melanoma, there was no pain, it was kinda done after two months, you’re just hopin’ it never comes back. With this, this was intense, life-altering pain. At the same time, the cancer was not in the liver, we were happy about that. It wouldn’t be good if it were the ocular melanoma metastasizing, so that was positive. They thought it was lymphoma, but here we were going into the holidays, so we couldn’t get treated. So we made two trips to the hospital. The first was for pain management. Lori said I can’t keep taking Advil like this, and I was taking Tylenol as well, but if I didn’t take the painkillers, I would be on the ground rolling around. That pain, nothing else had ever come close to it. So they put me on some opioids, Oxycontin and all that stuff. So I was finally treated after Christmas. December was just kind of a drug-induced haze. But I guess I did have some resolve. Once you get through the initial shock, then it’s like what are you going to do? Out of two options, I am not going to give up. I am not going to just throw in the towel, or whatever. You just try to find the best care you can. My wife, Lori, was phenomenal, because I really wasn’t in shape because I was so drugged up. She got me in with a great oncologist at UCSF, and I started getting treatment in early January 2016. The first part you have to be in the hospital for five days, and after that there were about six rounds of it, lasting until about April.
BM: Tim, you mentioned treatment options for the melanoma. What, if any, were your treatment options, or was there only one option for treatment the NHL?
TS: There were two different chemo regimes. The only one that I took was called R-Epoch. The other one, I can’t think of it, but it is more widely used. My oncologist said chances for effective treatment were better with R-Epoch than the other one. With the amount of pain, it had to start soon because there was no surgery option. It was dose-adjusted, so they come up a dosage for the first time. It is five days on, 16 days off. If your blood count is okay with the first, then they up the dose for the second time. My oncologist and two others said each time they up the dosage, that’s good news. By the end of April, early May, I was done, but it is unbelievable how much it takes out of you.
BM: What could do and what could you not do?
TS: The first round I was in the hospital. They have a program in which you can go in and get a new chemo bag, and I said let’s do that because I do want to go in the hospital and make repeated stays for five days. So I would drive in to San Francisco, get my bag chemo bag replenished and drive home. Then I had a great friend who sometimes took me to the hospital, but when I had bag replenished, it was so nice to be able to stay at home, sleep at home and not be at the hospital six different times for five days. There was a lot I could do, you just don’t feel like it. You have no sense of taste. You don’t feel like eating, and nothing tastes good. Then carrying around the chemo bag had its own set of challenges. In the 16-day periods in which I was off chemo, after five or six days, it didn’t feel so bad; but each new dosage was higher than the previous one. When the chemo dosages were done, there were sores in my mouth and I fell asleep on the couch, which I never do. You just don’t feel like you are ever going to feel good again.
BM: Doctors will say chemo is unpleasant, but it is necessary to kill the cancer. Do you now know where they’re coming from when they say that?
TS: Oh yeah. I mean what I had, it really knocked me down. Physically, I mean I used to be a runner, and I would try to walk a quarter mile, and I could barely do it. And mentally, you ask yourself, “Am I ever going to feel good again?” It’s hard to see three months down the road, and all the while you really don’t know if this treatment is going to do the trick. The oncologist told me the first day about 70 percent of the time, this works with the cancer you have; but 30 percent of the time, it doesn’t. You did get that last PET scan until like four weeks after the chemo, and the PET scan lets you know if the treatment was successful, so waiting those four weeks is difficult. Because I didn’t like the claustrophobia, they gave me a general anesthetic. But the PET scan came back clean.
BM: Going through all this, you must have had some level of helplessness, a feeling of being out of control. What was your source of strength?
TS: My family, my parents, they were living close by, my wife was phenomenal, she was such a support for me. You know when I was doing the opioids in December, I was taking them every four hours, and throughout the night or it would just get me. She would set the alarm, she would take care of me, really. That was a great source of strength. My kids, too. You just fight through it, even though you can’t see the other side sometimes.
BM: You’d mentioned Lori and how she helped out. Could you elaborate a bit on what she did, not just in a medicinal way, but in an emotional way, to keep you going?
TS: She did a ton. And she had just started a job in the summer of 2015, five months before I was diagnosed, as a regional manager. She had a ton on her plate. Now this happens, and I am somewhat incapacitated. She understood when I didn’t want to talk, I mean, my mouth is killing me with all these sores in it. I mean, I just want to lay down and watch TV. And if I was having a bad day, and there were plenty of those, I could cry on her shoulder, which was difficult on her, too. I was homeschooling Shilo for his year in first grade and I am all laid up with chemo all this time and he did great through the whole thing. It was tough.
BM: When did you sense some sort of indicator that things were trending in a good direction, and how did that feel?
TS: Once I got the good result from the PET scan, and I was starting to feel better. I would be driving with Shilo and we would pass a runner and I would say, “I’m gonna be out there.” So we went to the track near my house and we ran a mile. I ran it in 11 minutes, 30 seconds, and the next day I was so sore. In mid-July, we went up to Sunriver in Oregon for vacation, and we did a couple of nine-mile hikes, at altitude. I bounced back pretty quickly. I wasn’t at 100 percent, but I’d say I was at 80 percent. In September, I was racing again, and close to running the times I was running the year before. It came back fairly quickly. You know, April, May were particularly rough, but you could tell it was getting better. The mouth sores were going away, and that taste that accompanies chemo was going away, so there was light at the end of the tunnel.
BM: So how did it feel to be able to eat found again?
TS: Great! During the treatment, the only thing that sounded good to me was Taco Bell, like three tacos, just inhale them, and I never eat Taco Bell, but it was great at the time.
BM: So you eventually got past cancer. How would you describe the feeling of triumph that came with getting past this?
TS: There’s that feeling with both of them, but way more with the lymphoma because that seven or eight months of life being interrupted. The melanoma is still kind of scary, but it’s kinda over. As for the clean PET scan, it was nice, but you don’t feel it’s ever in the past. I go for surveillance for these things, and then I feel something somewhere and I say, “Ooo, what’s that?” And I don’t think that will ever go away. I see both sides to this, and I don’t want to say it’s a ‘fight,’ but my older brother, when all this was going on, he died in 2015 of cancer, and he fought with everything he had, but it was too much. I don’t like the connotation that you didn’t ‘fight hard enough,’ if you die, if you lose to it. I don’t think about battling cancer that much, unless something is bothering me, that makes me think it might be a symptom of something. Otherwise, I don’t really think about it that much anymore.
BM: So, at this point, Tim, is there anything that you and Lori and Shilo do periodically to celebrate the outcome of your journey?
TS: We celebrate it all the time just by lovin’ life, really. My eight-year anniversary of OM diagnosis was a week ago. Some years we talk about what that day was like, Lori and I will do that. We didn’t this year. You know, around Thanksgiving, Christmas, we think about the lymphoma anniversary, but we don’t do anything specifically. We just celebrate being alive, and doin’ our thing.
BM: The reason for establishing Cancer Interviews was to give back. We’re certainly not alone in that sentiment. Would you talk about the fundraising you have done to exact some of your own giving back?
TS: Once I was past ocular melanoma, I was thinking how powerless I felt at times, but I asked myself what could I do to help others, I had to do something. Like I’d mentioned before, I’d played speed golf, and so I thought, we’ll have a speed golf tournament. So I went to Bandon Dunes, a golf resort on the Oregon Coast. They have five courses there. I’ll play all five courses in less than five hours, and raise money. That raised about $18,000. I thought that’s cool, then I thought there were others who might want to do this. So we came up with the Napa (California) Speed Golf Ultra to fight ocular melanoma. So in 2015, we had eight teams, and we played for 12 hours to see how many holes you could play, and we raised about $35,000. We sought to do the same thing in 2016, but the tournament fell in April after I was already diagnosed with lymphoma, so even though I had no energy, we went ahead with the tournament and raised about $45,000 that year. Since then I have done a couple other things, including a 50K on Mt. Diablo in California, which raised $10,000 and then in 2019, we raised $25,000 for my oncologist at UC Davis for the lymphoma. He’s developing a treatment for lymphoma, which would be phenomenal if they could do that. Y’know, just trying to help out.
BM: And what’s the feeling that accompanies all this helping out?
TS: It feels good, because while you are being treated, you feel kinda powerless about the whole thing. You know, the $100,000 I’ve raised, in the grand scheme, isn’t much. It’s a drop in the bucket. However, if everybody thought that way, we’d never raise any money for these causes. It’s like voting. Does my one vote mean a lot? Probably not, but if everybody felt that way, then nobody would vote. And if I do something, then it gives somebody else a chance to help out.
BM: All right, Tim, we’re about to wrap up, but just want to remind you somebody watching right now is someone who was recently diagnosed. If from your experience, there is some bit of sage advice ro information you can pass along to that individual, what would it be?
TS: Couple things. Going onto the Internet and reading what you can, that’s something people think about right away. There’s a lot of information out there, but remember the cancer you have has not yet been in your body. Everybody’s different. The statistics are there for a reason. Some cancers are worse than other cancers, but whatever cancer it is, it has never been in your body. The stats are what they are, but in your specific case, that doesn’t mean it’s the end, if it’s a real bad outlook. For OM, I got that initial outlook and thought this is really awful. Then I found out this is 1-B, and I think, hey, not bad, and I felt pretty good. If somebody is watching this, I would just say if you want the information and don’t mind seeing a really bad diagnosis, go ahead; if you are not comfortable seeing, seek other ways to improve your situation through diet, exercise, fine, but don’t get caught in the trap where you’re seeing you have a ten percent chance of survival. It hasn’t been in your body, you just never know. And there’s breakthroughs all the time.
BM: Okay, Tim, thanks very much for sharing your story. We were hoping it would be informative and inspirational, and I believe it has checked both boxes. Thanks for sharing your story. We are all better for having heard it.
TS: Thanks, Bruce. Thanks for having me.
BM: Remember, we are all in this together, and that Together We Achieve More. So, take care and we’ll y’all on down the road.