Katherine's Story: tongue cancer

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Katherine: a flutist's fight with oral cancer

My name is Katherine and I'm 49 years old and I live in Baton Rouge, Louisiana. I'm married now for the second time since June of 1998, and I have one child. He's 15 year -old boy, and my story begins. I am a flute professor at Louisiana State University, and have been for fourteen years. And as part of my job I travel all over the world and do concerts and teach master classes and that sort of thing. In 1997, in April, I was doing a concert and teaching a series of master classes in Shanghai, in China. And one morning during this visit, I woke up with a rather large canker sore on the underside of my tongue, and it kind of scared me at first because it was really large. It felt like there was something in my mouth and I couldn't get it out, and but when I looked in the mirror and saw that it was a canker sore, I calmed down because I didn't think very much of it. I mean I was stressed out, I was trying to speak Chinese, I was doing a concert that night, and so on. So I thought, well, it's just a canker sore. And after the concert it was over, the stress of that, it felt better, and I went on from there to Hong Kong and did more, and so on.

But when I got back to the United States, it didn't go away, so I first went to my dentist. As the dental hygienist was doing my, this was in May in 1997 and she was cleaning my teeth, and I mentioned it to her and she looked very concerned and she said, "Oh, the dentist really needs to look at this. But when the dentist saw it, he just said, "Oh, it's just a canker sore", and he told me to use a combination of Benadryl and Maalox or something, and put that on it. So I tried doing that and then I was away for the summer. I was visiting a friend in Illinois and while I was there I was seeing a chiropractor for something else. I mentioned to him that I still had this canker sore on my tongue, and he told me to take L-lysine and said, that should get rid of it immediately. I took that and it didn't seem to help. The end of the summer in August I was playing at a national flute convention in Chicago and there were 2000-3000 flutists there, and by this time it was so painful that just hearing someone else triple-tongue was very painful for me. So as soon as I got back to Baton Rouge I went to see my primary care physician , I was in an HMO at the time, and showed it to him. And he just gave me some cream, I think it was a steroid cream of some type and said, this should take care of it, it doesn't look bad, but if it doesn't go away in a few weeks, come back. So I tried the steroid. It seemed like it was going away, I thought it was gone but it wasn't completely gone.

The canker sore that wouldn't go away

So after a few weeks I tried to go back to see my doctor, but he was out of town, so I went to see another doctor who said, well, you know, maybe you should get this biopsied. But he also said that he was surprised because he said cancer doesn't usually react positively to steroids, I mean, it wouldn't have gone down if it was cancer. So I went back to see my PCP when he got back to town, and by this point I was getting frustrated because nothing was working and I said, well you know, this other doctor thinks I should have a biopsy, what do you think? And he said, no, you don't need a biopsy. You don't have any risk factors. Because I've never smoked, I don't chew tobacco, and I don't even drink alcohol and live a very healthy lifestyle and am a very happy person. I work out five times a week and eat a very healthy diet, and so on.

So, anyway, at this point he brought in another doctor from his clinic where he works who he said was a canker sore expert, and they put me on folic acid and so on. By this time I felt they were just grasping at straws and something was wrong here. But, of course, I didn't want to believe it, either. So at this point I was taking my son to see an orthodontist about getting braces, and I went to see him. I talked to him about the canker sore and he asked to see it. When he looked at it, he got a look of horror on his face and he said, you need to see an oral surgeon immediately, because oral cancer is not something you want to fool around with. So I called my PCP and said to him, you've got to refer me to someone who can biopsy this. So he finally gave me a referral to an ENT. By this time it was late October of 97. I'd had this canker sore for seven months. But when I went in to see the ENT he looked at it and he said, "you know, I've seen a lot of oral cancer and this just doesn't look like it." But I'm going to do a biopsy because I'd be negligent not to. So he did that and that calmed me down a little bit and that weekend I took my students off to a competition and didn't really think about it very much.

The final diagnosis

But the following Monday, which was November 3, 1997, I was teaching in my office and got a call from this doctor's office, saying, you need to come in immediately. And I said, well, I have an appointment tomorrow, what's the rush? And they told me over the phone, well, the biopsy showed carcinoma in situ in your tongue. So I went immediately to see the doctor and he said he wanted to schedule me for surgery that week, to have part of my tongue removed. So, I was very shaken because as a flutist. I mean, for anyone, this would be difficult to deal with, but as a flutist, this was what I needed to earn my living. So it was very difficult time and I handed one of my solo CD's to the doctor, as I was leaving and said, Look, I don't want to put pressure on you but I'm really hoping I can still sound like this when you're through with me.

The other problem was that when I went to see the people in his office about my insurance to get the surgery scheduled, they said, Oh, well, you're with this particular HMO, it'll take two weeks to get this approved. And at this point I said, "well, you don't understand," and of course that didn't do any good. So I went back to my PCP to his office and walked through an entire waiting room full of patients and walked back and saw the nurse and said, "I've just been diagnosed with cancer and I want to see my doctor right now." So he came in, looking absolutely flabbergasted that I had been diagnosed with this and he got on the phone and immediately got me scheduled for surgery that Friday. In the meantime, I had contacted family and friends about this and my brother, who had gone to Harvard Business School, had a friend who had been in Harvard Medical School, who now runs a cancer consulting firm in Chicago. He had me contact this guy, this guy contacted my doctor but he was very reassuring. And he said that this was the right thing to do, to have the surgery because the carcinoma in situ wasn't necessarily full blown cancer, and that you know, even after this surgery, it might just show that it was inflammation and not cancer at all.

Moral support

So I also was at that time on a flute list on the internet, and I posted my crisis for everyone to see. It was very good because I was getting a lot of reassuring e-mail from everyone, all these flutists all over the world, telling me that they were praying for me and so on. Another flutist who I had met through this flute list, had had something similar. It wasn't cancer but it was a dysplasia of the tongue, and she had had tongue surgery and she was very helpful. She e-mailed me a lot and gave me advice on things to do to help minimize the pain and so on after and speed up the recovery time after the surgery. Things like taking a supplement, it was a pineapple extract that reduces swelling after the surgery. And also things like stocking up on liquid supplements like Boost and things like that that you can eat while you're still recovering from tongue surgery. Get all your vitamins that way, and getting your pain medication ahead of time before the surgery so you won't have to worry about rushing around to get it.

Well, I had another problem in that I didn't have any family in the area, or anyone who could really help me. But my prayer partner from my church, an older man, was really wonderful. He took me to the hospital and took me home. Some of my students helped me take care of my son, pick him up from school and so on. Going in to the surgery this first time, it was on November 7, 1997, I felt like nothing could go wrong because I had all these people praying for me and everything was fine. I went in, very brave and the nurses were all when I was right before the surgery they were coming up to me saying, "oh, we understand you're a world-renowned flutist and is it flutist or flautist?" So I was sort of you know expounding on this subject right before I went in to surgery. And then when I came out of that, I remember thinking, you know, this wasn't so bad, I could go through this again. Little did I know that I would be going through it again in about two weeks' time, but at that time my prayer partner told me that the doctor had said that everything looked great, he didn't see any cancer, everything was fine, and there shouldn't be any more problems. So this was a Friday. I went home, slept, recovering pretty quickly. It wasn't so painful, I felt I had some numbness in my tongue which wasn't going away and that was worrying me because I needed to be able to feel my tongue to play the flute. So I was worried about that. But I could talk and I could eat soft things, and by Monday I went back to work. I couldn't play but I could teach, because I could talk.

Not over yet

So I went to the office on Monday and Monday afternoon I decided to go home a little early to rest. When I got home there was this message from the doctor on my answering machine, which I knew was not good news, because doctors don't usually call you themselves to tell you how great you're doing. And in the message he said, I need to discuss, the pathology has come through from your surgery and there's some issues I need to discuss with you. So, shaking like a leaf, I called the doctor back. And he said that the pathology had shown that it wasn't just carcinoma in situ, it was squamous cell cancer. The good news was that they'd gotten the whole tumor but the bad news was that there was only a two millimeter margin on one side and they were gonna have to do more surgery. So he wanted to reschedule the surgery but I wanted to talk first with my cancer consultant in Chicago. I talked to him and he seemed very concerned. He said especially as a flutist, before I had more surgery I should maybe explore some other options. And so he had me get in touch with the Cancer Treatment Center in Tulsa, Oklahoma, and to see a doctor there who was a specialist in a special form of radiation called brachytherapy therapy. I made this trip. My HMO wasn't going to cover it so I had to pay for everything out of my own pocket. And when I arrived at the cancer treatment center in Tulsa they told me that because my HMO would not cover anything that they could not treat me there unless I could prove a credit line of $150,000.

Well, anyway, I was there, and I had paid enough to get examined and get some advice. The people there who handled me were very nice, but they did explain that radiation in any form was really not a good option for me as a flutist because it has the permanent side effect of complete dryness of the mouth, and that I would never play again. So they oohed and aahed at the wonderful job that my surgeon here in Baton Rouge had done, and they encouraged me to go back and have more surgery and they said those magic words, if you do this then you should be cured. At the same time I was there, I met other people who had tongue cancer who were in much worse shape than I was, with tumors that were so large that they were gonna have to have radiation and chemo before even being able to have surgery.

So I felt very positive after having this meeting and I flew back to Baton Rouge. But when I met with my surgeon, prior to having the second surgery, he said, well the numbness that I was still feeling in my tongue might never go away. And it might get worse, that I might never taste food again, that I might they might have to graft part of my cheek onto my tongue and things like this. So I was getting a little nervous, and to compound all this, this cancer consultant from Chicago, just two days before my surgery, calls me up at 5 o'clock in the morning with a conference call with another doctor from Seattle, or something, who said, Postpone your surgery. And I said Why? And he said, because, if you have any cancer cells left in your tongue, if they do more surgery, it'll spread all over your body and you'll die. And I said, Well, what other options do I have? And he said, well, there's radiation, and I said I've already looked into that and I was told that's not a good option for me. And then he started talking about interferons and things. And I just didn't know what to do. So that next day I was supposed to see a tongue specialist in New Orleans about a proposed follow-up treatment after the second surgery. So at this point I was very stressed out. My prayer partner from church drove me to New Orleans and went in with me to see the doctor, while he was examining me, because I often felt like I couldn't understand what they were saying because I was so nervous when I was talking to doctors. I felt like a deer in headlights, or something.

Pulling out the weed

So I went to see the tongue specialist and on the way over I prayed that I would be guided to do the right thing - it's so confusing when you have cancer and one specialist or one expert is telling you you need to do this and another one is saying if you do this you'll die. So I went to see this tongue specialist and he was wonderful and he said. You need to have the surgery and you need to do it now. He said it's like if you have a weed in your garden. If you pull out that weed it might grow back but if you pull out the weed with a wide swath of dirt around it, then that particular weed is not going to grow back.

So I went back and had the surgery on the 20th of November 1997. It was kind of amazing, because before I really felt like I was trying to control things and at this point I just realized that everything was out of my control, that I just had gotten, done the best I could do, gotten the best advice I could get, and I was just going to let go and see what would happen. And when I woke up from the surgery, the second time, it was sort of amazing, because the feeling was back in my tongue! I'd been numb after the first one and all the way through, but now I could feel. And I went home after the surgery, it was outpatient surgery, when I woke up the next day I got a call from the doctor's office saying that this time everything had been all clear. So that was very good and I was very happy. It took me a little longer to recover from the surgery this time, but I did and you know within a few weeks I was playing my flute again, a little bit, slowly at first, but that was coming back.

But then there was a question of the follow up treatment that this doctor in New Orleans wanted to do with something called retinoic acid and it was it's a sort of experimental treatment. Some people get placebos, some people get the real thing. But they were so anxious to have me in this study that they were gonna guarantee that I would get the retinoic acid. However, I got a call from my surgeon saying, I don't want you to do this because it causes, the retinoic acid can cause liver damage. And then I started doing my own research on the internet and I found out indeed that this was true, and so I decided to call up the doctors that I had seen in the Cancer Treatment Center in Tulsa, and they were wonderful. They did call me back and they said we don't think you need this treatment. They said that my chances of recurrence were very small, and so they didn't think I should do it. In the meantime I saw an oncologist here in Baton Rouge about this, and he said he thought I should do it. I thought I should do the retinoic acid. And I said, Well, if I do it, can you guarantee that I will never get a recurrence? And he said, No, so then I said, well, why? After two hours of his examining me and talking with me, it came out that in this study that most people that have oral cancer don't get diagnosed until it's pretty far advanced. He said they were having trouble finding people for the study, and since I fit the profile perfectly for what they were looking for, they wanted me in this study. So I just said, thank you very much but I don't want this, and decided not to.

Carpe diem

In the meantime, while going through all this, I started reading a lot of books, and one of the most books that helped me the most was "Love, Medicine and Miracles" by Dr. Bernie Siegel. In this book, one of the things he said, which really struck me was that if you have cancer and you want it to go away, or you've had cancer you don't want it to come back, or if you just don't want to get cancer in the first place, one of the best things you can do is to start living your life as if you only have one year left to live. And at first, I was in, total denial about this. I said "oh well, I'm already doing this, I love my job, I love my students, I love my colleagues, and everything's' fine, it's just terrible that this happened to me." But I was living my life as if I had one year left to live. But then when I was really honest with myself, I realized that I really wasn't. There was a man who I had met here at Louisiana State university, a composer, who left after my first year, went teaching in Illinois, and we'd been having a long distance relationship for eleven years. And even though it was a wonderful relationship, when he's in Illinois and I'm in Louisiana, there's something wrong with this picture. So, after reading this book, part of the reason we thought we could never be together was he was a full professor with tenure there, I'm a full professor with tenure here, and financially it just didn't seem possible. But somehow after having cancer, it put that more in perspective so that Christmas of 1997, I proposed to this man, and he said yes. And he quit his job and moved down here and we got married, as I said before, in June of 1998, and he's now lives here and composes full time. And we're very happy.

Putting it all in perspective

Then the other thing besides just trying to change make this major change in my personal life, it's hard being a single parent, especially with a teenage son, and so this has been wonderful, having Paul in my life. And he's not only helped me, you know, he's here with me, but he helps me with my son, he does a lot of the carpooling, he does all the cooking, it's just really wonderful. It's taken a lot of stress out of my life and adds so much happiness to it. The other thing is that being a performer is kind of stressful and I used to get very nervous when I performed on the flute. I always thought if I made a big boo boo at a concert especially at a convention where there are all these thousands of flutists, something like this would happen, it would be the end of the world. Well, after having cancer, it sort of puts things in perspective, and now I try to not stress out about that sort of thing so much, and I think that's really helped me.

But there was a little bit more to the story. In the year that followed all this, there were some scares. Whenever I would eat anything that had red pepper or cayenne or any kind of spiciness in it, sometimes this would have a very adverse effect on my tongue. It would swell up and hurt and this would go on for weeks. And the first time this happened it really scared me and I went in to see my surgeon and he did another biopsy. Which came out okay. But then I was still having some pain in my tongue at various times and so they did a CT scan. This was in the summer of 1998. I think it was in late June or something like that, and it showed an enlarged lymph node in my neck. The doctor seemed very concerned about this because he said that if the cancer were to return, it would probably be in a lymph node. So when they got this, even though the lymph node was in the realm of normal, it was enlarged and they said they wanted to do it again, another scan, in three months. So it was kind of hard to have this hanging over my head for three months. I went into counseling just to try to learn to deal with this waiting. But then I went on. I went to England. I was teaching at the Oxford Flute Summer School in Oxford, England and it was wonderful. I convinced myself that the enlarged lymph node the first time was just because maybe I'd had some allergies or something, and I felt great when I came back and when I went for the next CT scan I just felt perfectly fine. So I went in and a few days later I get a call the doctor wanted to see me. Well, I knew again it wasn't to tell me how great I was doing. And he said the lymph node had doubled in size. At this point he was really willing to do some cutting again, he wanted to take out one of my salivary glands and biopsy it and lymph nodes and biopsy them, and I said, you know, did I have any other options. And he said, well we could do an MRI in a few weeks. And again I called the Cancer Treatment Center in Tulsa and they were very nice again. They said, don't let them cut you, do the MRI, I'm sure everything will be fine, lots of things can cause lymph nodes to be enlarged. And the other thing was the doctor even the surgeon who wanted to do more surgery, I kept saying well I can't feel any lymph nodes and he couldn't feel it, he couldn't find it.

So I was waiting to have my MRI and while I was waiting I got sick and my lymph nodes did get big so I refused to have the MRI because I didn't want to give them an excuse to cut me. And then while after postponing the MRI my son had an allergic reaction to something and went into anaphylactic shock, and so my husband and I went to the hospital with him and were up all night, and he was fine, after that. They figured out what it was they first thought it was an asthma attack and they gave him the wrong medicine but once they figured out it was anaphylactic shock they got him stabilized and everything was fine. After all this and my husband became ill, we spent the night in the hospital, my husband became ill and then I started to get sick again but my doctor said you can't postpone this any more you need to go and have the MRI. So I did and it showed that everything was clear. So I told my doctor that because I do have CT scans periodically, that I'm not having any more CT scans, only MRI's and so far all of them have been clear. And from the counseling I went through and everything, I've gotten much better about taking tests and waiting for results. I feel like you know, with this it's always difficult. I have two options: one is I can if I have to wait three months three weeks or whatever it is, for the results of the tests, one is that I can get all hysterical about it and then it can turn out to be nothing, in which case I've just totally wasted three months or three weeks or whatever of my life. And the other is that I could get hysterical and then it could turn out to be something. But once again, this is something we don't have control over and I would have wasted this time that I could have been enjoying myself and having a good time.

Positive change

So I feel when I look back on this whole experience I feel like the cancer has really been a blessing. It's spurred me to make some very positive changes in my life and in my attitude toward things. I feel happier now than I've ever been in my entire life, and I feel that it's very important for everyone to live each day to the fullest and try to just make sure I try to enjoy every moment of every day. I try not to allow myself to get stressed out about stupid little things. If I'm caught in a traffic jam instead of getting all upset about it, I try to find something on the radio to listen to or something like that, or pop in a tape that is interesting. Just so I feel like I'm enjoying my time rather than sitting there fuming about why isn't the traffic moving. Performing, I've come to try to accept the fact that I'm not perfect, and that I'm never gonna be perfect and that just because I screw something up, it doesn't mean it can't still be a good performance. And hopefully I'll bring joy to someone who's listening to it. And so that's my story.