Jameel Haiat survived throat cancer | gastric tube | cisplatin | tracheotomy | radiation therapy
DESCRIPTION
In 2023, Jameel Haiat began to experience pain in his throat so severe he couldn’t swallow. This led to a diagnosis of throat cancer. The tumor was extremely close to his vocal cords. Jameel was given the option of a tracheotomy or a combined regimen of cisplatin chemotherapy and 33 rounds of radiation therapy. The former raised the possibility that Jameel could lose his ability to speak, which is why he went with the chemo and radiation. The treatment was needed as Jameel said he felt as he had “razor blades” in his mouth and throat. He now consumes food and beverages through a gastric tube that lands food and beverage in his stomach. Although he gains necessary nutrition, he has had to adjust just what he can and cannot eat. He cannot do heavy lifting but has a gym in his home so that he can get a manageable level of exercise and maintain muscle mass.
An artist and a poet, Jameel moved from Los Angeles to Thailand in April 2023. About a month later, he thought he had come down with a severe sore throat. His doctor thought what was ailing Jameel was nothing serious and prescribed some antibiotics. The pain went away, but returned six months later. Not only that, but suddenly he couldn’t swallow. He returned to his doctor, tests were performed and he was diagnosed with Stage IV throat cancer.
Jameel was 58 at the time. He was pumping iron, hiking, had a healthy diet, rarely drank and felt he was in the best shape of his life. So, when he learned of his diagnosis, he laughed because he thought his doctor is joking, but it was no joke. Regarding treatment, he was given two choices. One could be a combination of chemotherapy and 33 rounds of radiation treatment. The other was a tracheotomy, but the doctor told Jameel such a procedure would be high-risk because of the tumor’s location, close to the vocal cords. Jameel already couldn’t swallow. He didn’t want to risk being able to no longer speak, so he chose the chemo and radiation.
While he was able to deal with the cisplatin, the radiation was another story. Jameel said he had burning and blistering on his neck, and when he tried to swallow, it felt like he had razor blades in his mouth and throat. In addition to the acute physical pain, there was the emotional pain of knowing he would never swallow again. In his hospital room, he was often in tears.
Jameel felt he was moving closer to survivorship when he was discharged from the hospital. He was hooked up to a gastric tube, through which he consumed food and beverage. Jameel has modified his diet, so that it is compatible with the tube.
These days, Jameel Haiat cannot do the heavy lifting he could do prior to his diagnosis. He can no longer travel by air. Although he can travel by car, he must take with him the right foods and fluids. What remains the same is his ability to engage in art and poetry.
Additional Resources:
Jameel’s website, with his bio, poetry books, art and other writings
Jameel on Instagram, which chronicles his daily life through video and poetry
TRANSCRIPT
Bruce Morton: Greetings. This is the @CancerInterviews podcast and I am your host, prostate cancer survivor Bruce Morton. Our guest on this episode suffered from a throat so sore that anytime he tried to swallow there was a burning sensation. That became a diagnosis of Stage IV throat cancer. Thanks to a heavy dosage of cisplatin chemotherapy and radiation therapy, Jameel Haiat of Chiang Mai, Thailand, survived and has resumed life as a poet and an artist. Now it is time to hear a powerful story, and Jameel, welcome to Cancer Interviews.
Jameel Haiat: Thank you so much. Thank you for having me.
BM: It is our custom to start by talking about things other than cancer. That said, Jameel, tell us a bit about yourself, where you are from, what you have done for work and what you like to do for fun.
JH: I am originally from Los Angeles, born and raised. Grew up around East LA. I majored in the Arts at Cal State-LA. After school I went into the theater and entertainment industry as a sculptor and ultimately as an art director and became a production designer for Walt Disney Engineering. I was in that area for about 27 years. That took me around the world. I traveled to Shanghai, Hong Kong, Disneyland in LA, Disney World in Orlando, all over the places doing different projects. That’s what I did for a living for quite a while. As you mentioned, what I like to do now is, I love to create my art and write my poetry. So, I am living the creative life in Thailand and it’s good.
BM: Jameel, for all of us diagnosed with cancer, there was that point in time in which we noticed something abnormal with our health, something that led to a cancer diagnosis. For you, it was the sore throat. When was that and tell us a bit more about that awful time.
JH: That question has a twofold answer. I moved to Chiang Mai in April 2023. About a month later I felt like I was having a severe strep throat. I went to the doctor, not thinking much of it. He looked at it did, a scope, thought it was fine and gave me some antibiotics. Fast forward to six months later when I started feeling symptoms again, and the reason I was feeling them was because my wife and I were designing a Halloween show here and we cast ourselves as some of the actors in the show. I cast myself as this big monstrous cat that had to do a lot of speaking and shouting and screaming, so I lost my throat, couldn’t swallow, went to the doctor and that’s when I discovered the diagnosis of cancer.
BM: Everybody is different and every diagnosis is different. Given the variables with your equation, how did you handle this awful news?
JH: Well, I was shocked because I was 58 years old and in the best shape I had ever been. I was going to the gym five days a week. I told my wife I thought I would enter some Thailand fitness contest. I was pumping weights, I was in great shape, didn’t smoke, very rarely drank, ate healthy food, so when my doctor told me that, I actually laughed. I thought he was joking. So, I was shocked, but I wasn’t afraid because if anybody was going to beat this, I can do it. That was my initial reaction.
BM: By the way, we hope you will find time to like and subscribe to our channel. And if you hit the bell icon, that way you will be notified anytime we post an interview. We also want to remind you that on Cancer Interviews, we do not provide medical advice. If you or a loved one seek medical advice, please consult a licensed health care professional.
Now, Jameel, with each different type of cancer, there is a different number of treatment options. Did you have treatment options?
JH: I did. The hospital I went to was excellent, as was my doctor. However, because of the location of my tumor, it was extremely close to my vocal cords. My doctor was hesitant but gave me all options. He said he could operate, but if something does go wrong and there is a nick of the vocal cords, because the tumor is right there, that could possibly lead to tracheotomy, and so I had to weigh all the options. He said it is either that, or chemotherapy combined with radiation. Because I thought I was so strong at that point, I thought didn’t want to take the risk of not being able to speak again and have a permanent tracheotomy, so I went with the radiation option and that’s what we ended up with.
BM: Chemotherapy is never pleasant and chemotherapy was part of your regimen. The cisplatin. What was the toughest part of that regimen?
JH: To be honest with you, the chemotherapy didn’t impact me so much. I was tired. Hospital care in Chiang Mai is actually very, very good, which is why a lot of people move here, Westerners especially. I had a private room. All my chemotherapy was done overnight. I could rest and stay there, so it went very smoothly. The part that really messed me up was my 33 rounds of radiation.
BM: And what was the toughest part of your radiation treatment?
JH: Every part of it. My body reacted very harshly to the radiation. I had burning on my neck, blistering on my neck, so the pain, exterior-wise, was very bad. It literally felt like I was swallowing razor blades or had them in my mouth, day and night. It was excruciating. Then, beyond that physical aspect of the radiation, it put me in a mental place that was very bad. I started to fear even going into the radiation room, so I was really kind of a mess, due to the radiation.
BM: You had talked about what seemed like the presence of razor blades in your throat, you mentioned the mental aspect of all this, but how difficult was the experience from an emotional perspective?
JH: Not knowing I could swallow again was really difficult. I went into a really bad depression and even though my wife stayed with me in the hospital, my mother-in-law stayed with me, I had a lot of love and support. It’s just that I thought of myself a few weeks before being able to bench press what I could bench press, squatting the most I have ever done, to someone who felt frail, always falling asleep, not being able to swallow in the hospital, my mind played a lot of tricks on me, really messed with me.
BM: And how did that emotional stress manifest itself?
JH: I would say even before the cancer I was fairly emotional. I think that is one aspect of being a creative person. I don’t necessarily feel more than other people, but I feel in a different way. Because I was already sort of an emotional person, I think I felt all this deeper. So, I sunk into kind of a deeper depression. I would cry often in the hospital room, and I am not the kind of person who would hide it, either, even though I know it could pain people around me. Maybe it was part of my saving grace, to let that out. I would even cry in front of the doctors, and say, “Please, I don’t want any more radiation.” This whole thing expanded my emotions just that much more.
BM: At the top, we mentioned that you are a poet. I think I already know the answer to this yes-no question, but during a cancer journey, can poetry have therapeutic properties?
JH: Yes, absolutely. Any creativity can, without a doubt. I firmly believe that, and that’s why I share my story, but helps specifically because it allows me to put into words. They aren’t just words strung together. There are personal, tangible elements that when I write them out and they deal with my pain. I don’t write about rainbows and butterflies. It’s about the pain and trauma. It’s about a personal and expressive means for me, so it becomes a therapy for me. It really is a healing agent.
BM: Now, you have written a poem that deals with the pain and trauma. Could you share it with us?
JH: This one is from a book I have just recently written. It is about the legacy of where we go in our minds, contemplating the mortality once one hears the words, “You have cancer,” and the legacy of what I will leave behind for my wife. Here it is: When I am gone, read my words and I will be there/When I am gone, see my paintings, and I will be there/When I am gone, touch my photographs and I will be there/When I am gone, remember my beliefs and I will be there/When I am gone, close your eyes, and I will be there/When I am gone, feel the love that surrounds you, and that is me. That’s the poem. Very short and simple, but to the point. Every time I read it, I feel emotional, it reminds me of the things that I share with my wife, and if I leave, how profound and how memorable they are,
BM: Short, to the point and powerful. Speaking of powerful, I hope I am leading to another positive component with this question. When did you feel as though you were moving toward survivorship?
JH: I think probably not until very near the end. The pain was so intense. It was very hard to see past that. I was in the hospital past Christmas and through New Year’s. I didn’t celebrate any of that at the time, nor would I have wanted to because of what I was going through. It wasn’t until the end of my treatment that I started to see the light, and tell myself, “Maybe it’s going to be okay.” I saw just glimpses of that instead of an unveiling of the curtain. There was no ringing of the bells like they have in most cancer wards in the States. There was none of that. I was just happy to get out of the hospital and go back home.
BM: But you were out of the hospital and as you have demonstrated to us, swallowing is still very difficult. Knowing that is going to be part of your life going forward, how difficult is everything, including eating and drinking, if you can’t swallow?
JH: Everything is done through a gastric tube. When I first came to the hospital, I had a nasal tube. That was for about six months. During that time, I was trying to eat and swallow, eat and drink, slowly, surely, trying to heal, but now everything is done via gastric tube. All of my medications, if I have to hydrate, especially during the hot days in Thailand, for example, I will just inject water into my tummy. Everything is done through my tummy tube. I cannot swallow anything anymore. Even my saliva, as my saliva glands were destroyed during radiation. So, my mouth doesn’t produce saliva. It produces very thick viscous saliva that dries my mouth out instead of moisturizes it. I cannot swallow anything anymore. My esophagus is basically shut down, closed, done.
BM: But you can still get the nutrition that you need via the gastric tube, yes?
JH: Yes, everything. In fact, I have created my own diet and my own supplements based on what I used to do when I would work out. It keeps me energized, it stops me from being fatigued, it’s pretty normal; but the funny thing about having liquid nutrition pumped into your stomach for all your meals is that your weight never fluctuates, so I am very constant in my weight.
BM: You have talked about how you eat and drink through the gastric tube; but if you could say your health was at 100 percent, pre-diagnosis, physically, what is it today? What can you not do that you could do before you were diagnosed?
JH: That’s a very good question because before cancer, I was very adventurous. My wife and I would travel everywhere around the world. I can’t do those things anymore. I just don’t have the stamina or the strength for them anymore. I also cannot fly to certain areas because I have certain dietary needs. I can’t just plop down in some café and say give me the noodles or whatever the dishes may be. So, travel has been difficult. I don’t fly anymore, at least right now. When I travel through Thailand, I drive. The things I would do before, like working out, I can’t lift heavy, but I created my own gym here at my house that allows me to exercise because I want to still maintain muscle and be fit and not decline further.
BM: Jameel, we are about to wrap up and we will conclude with the same question we have for virtually all our guests. If you encountered someone who had just been diagnosed with throat cancer, or thought there was a possibility they might be, this individual might have a lot of questions for you and you might have a lot of answers, but if there was one point you wanted to make sure this person remembered once your conversation was over, what would it be?
JH: I would say this, and it is more philosophical than anything else: Be prepared to be unprepared because no matter how ready you think you will be for this, you just mentally and emotionally will not. It will affect you one way or another. You will carry that with you and you will work through it and hopefully come to where I am, with acceptance. Be prepared to be unprepared. I think that is the most important thing to understand that.
BM: That’s outstanding advice from somebody who has been there as one who has been diagnosed with throat cancer. So, Jameel, I want to thank you very much for sharing your story, and acknowledgement of your artistic work will be in our Description and Show Notes below.
Jameel, thanks very much for being with us on Cancer Interviews.
JH: Thank you so much, Bruce. Bye-bye.
BM: And we want to remind you as we always do when we conclude that if you or a loved one are on a cancer journey, you are not alone. There are individuals out like Jameel Haiat with information that can ease the cancer journey. So, until next time, we’ll see you on down the road.
Additional Resources:
Jameel’s website, with his bio, poetry books, art and other writings
Jameel on Instagram, which chronicles his daily life through video and poetry
SHOW NOTES
TITLE: Jameel Haiat, Throat Cancer Survivor – Chiang Mai, Thailand
In 2023, Jameel Haiat began to experience pain in his throat so severe he couldn’t swallow. This led to a diagnosis of throat cancer. The tumor was extremely close to his vocal cords. Jameel was given the option of a tracheotomy or a combined regimen of cisplatin chemotherapy and 33 rounds of radiation therapy. The former raised the possibility that Jameel could lose his ability to speak, which is why he went with the chemo and radiation. The treatment was needed as Jameel said he felt as he had “razor blades” in his mouth and throat. He now consumes food and beverages through a gastric tube that lands food and beverage in his stomach. Although he gains necessary nutrition, he has had to adjust just what he can and cannot eat. He cannot do heavy lifting but has a gym in his home so that he can get a manageable level of exercise and maintain muscle mass.
Additional Resources:
Jameel’s website, with his bio, poetry books, art and other writings
Jameel on Instagram, which chronicles his daily life through video and poetry
Time Stamps:
02:47 In 2023, he began to experience a very sore throat.
04:19 Recalls his reaction to his diagnosis.
05:55 Jameel is asked if he had treatment options.
07:10 Said his chemo regimen wasn’t that bad.
07:55 Is asked about the toughest part of his radiation therapy regimen.
09:19 Describes the emotion challenges of not being able to swallow.
14:29 Jameel is asked what it was like to move toward survivorship.
15:43 Says food and beverage is consumed through a gastric tube.
17:57 Is asked what he cannot do now that he could do, pre-diagnosis.
20:13 Jameel’s advice to those diagnosed with throat cancer.
KEYWORDS (tags):
throat cancer
cisplatin
radiation therapy
esophagus
strep throat
gastric tube
tracheotomy
viscous saliva
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