soccerfreaks' Journey:

Survivor: Head & Neck/Throat Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 11 years ago, Male, Age: 60, Stage IVB

  1. 1
    about 5 years ago
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    Diagnosed

    Oh No

    I was diangosed with cancer in early September of 2005. I was diagnosed with what the American Cancer Society (ACS) and the doctors who eventually owned most of my soul refer to as head and neck cancer. Simply put, I had a bump on my tongue that turned out to be cancerous. Cancer, you will discover, if you do not already know, is not as simple as that. A bump on the tongue is merely the beginning, as any woman who has been told that she has 'an interesting spot' in her breast can tell you, as any man who has been advised that 'they want to take you in for additional tests regarding your right lung' can affirm. Cancer is not simple. My simple cancer started with what I described to my family doctor as a sore throat. He took a look (and bear in mind that, ironically enough, I was a well-known gagger, unable to tolerate Popsicle sticks shoved down my throat, for one thing) and advised that I had a sore throat. He prescribed medicine. I was to take this antibiotic for a week, three times a day, and I may have, and I may have slipped now and then. I am a man. I do not mean to come across as sexist here but I think that men are less prone to take their medications as prescribed, and my wife, who is a nurse, insists that this is so. I went another week without bothering to contact my doctor, hoping that the sore throat would disappear on its own, since the antibiotic didn't work. That is not unique to me. Again, it seems to be the kind of thinking that men indulge in from time to time. I finally went back to my family doctor, and he had another look, and he prescribed what was presumably a stronger antibiotic. At the same time, he made an appointment for me with an Ear/Nose/Throat doctor (commonly referred to as an ENT, like something out of Tolkein) for some time in October, in the event the sore throat had not disappeared. All of this happened between July and August of 2005. On the first Friday of September, and I only remember because my college football was playing their first game of the season the next day, I called my doctor in the late morning and told him that I had a bump on my tongue, that it hurt like XXX, and that I couldn't, in fact, eat the night before. The night before, by the way, my wife made steak with mushrooms and onions, along with scalloped potatoes and green beans. There was bread. I like to imagine that it was garlic bread, although I suspect it was really Wonder Bread. Still, it was a meal fit for a king. And I could not eat it. Or, I thought I could not eat it. With what I know now, I would advise that it was the last meal I every truly ate in the way that others eat. On that Friday, as I mentioned, I called my doctor and told him about the bump and the fact that I was really hungry, and he set aside a time in his busy day for me to come by to see him. I did. Now, with knowledge of the bump on my tongue (what, am I supposed to be the expert here?), he stopped looking for redness in my throat, apparently, and concentrated on the bump on my tongue. In fairness to him, I am not sure the bump was there before Friday. I am not sure of anything. Like many a cancer survivor, I look back and wonder if there were signs or symptoms that I should have caught, that he should have been looking for. I do not know. I know this: He said, 'Joe, go home, pack your bags and head over to Bayside Hospital. I will meet you there.' (There really is a Bayside Hospital. I am not making that up. You probably thought it was just in soap operas, but, no, it exists.) He said he suspected an abcess, an infection, the implication being that it might explode at any moment and kill me dead in my tracks. Or so I interpreted his message. My response (I'm a man, don't forget): 'Are you serious?' His response (he's a man, too): 'Yes! Get your XXX home and get some clothes and meet me at the hospital!' My response (I'm still a man): 'Okay.' I didn't do that, exactly. (I am a man.) I did drive home immediately. I did pack some things as quickly as I could. My wife will confirm that I can pack for a trip to the Arctic Circle faster than she can get ready for a trip to the mall. When I am going to the hospital, I seek clean underwear, and by that I mean underwear I have not yet worn (the only insurance against unsightly stripes and skid marks), and beyond that I just throw some things into a little leather Tote bag I have, knowing I will not wear them anyway. I called my wife. And then I sat down and drank beer. I may have had a few beers and then called my wife. I am a bit foggy on that point. But I did call my wife, and I did drink some beer. I called my wife once. I drank more than one beer. My wife said she would meet me at the hospital. The beer said it would be a good idea if it left me before I left the house. I understood. Parting is such sweet sorrow, but, from a practical perspective, the right thing to do. I had not developed an intimate relationship with any particular one of the beers anyway. I think I knew that this was it. If you are a survivor, you know what I mean. There comes a moment when you just know the news is going to be bad and that the word 'cancer' is going to come up. Maybe I am alone in that, but I know it was true for me. I knew the abcess business was a ruse and that I was going to be facing the big C, the Beast. I knew it. I arrived at the hospital and told them why I was there (actually, I don't remember much of this, so live with my imagination for a moment). I recall being in a room. There was an old guy there. They told me he was an ENT (see above) and that he was going to do a biopsy on my tongue. I had issues with him due to his appearance. It seemed to me that they had perhaps dragged him from under a bridge somewhere. He was ancient, at the very least, and I wasn't certain that he would be able to find my tongue even if it was pointed out to him: ('No, no, those are his tonsils; there is his tongue!') It also struck me that maybe one of us was drunker than the other and that while I should be the winner in that contest, I was not certain that I was. I longed, for the first time in my life, for a policeman and a breathalyzer. Neither was to be had. I remember family in the room. I am fairly certain that they gave me some drugs (not my family, but the medical professionals) because it was not long before I stopped remembering my family in the room. At some time during the evening or early the next morning, it was decided that I had cancer. I did not have an abcess, I did not have an infection, I did not, when you get down to it, have a sore throat. I had cancer. They determine this by cutting out a bit of the tongue and by scraping away bits of the cheeks while you sleep, during what they refer to as a biopsy, incidentally. I awakened with what felt like a sock in my mouth, but attempting to chatter away nonetheless, no doubt due in greatest measure to the opiates still impacting my version of reality. My family doctor came in to visit me, and, sitting on a small stool for some reason, he tried to give me the news. The truth is, we have known each other for a number of years and have been friends for longer than he has been my family doctor. I think the diagnosis was clogged up in his throat for that reason. He said, 'Joe, it was not an abcess. It was a...', and seemed to get caught on the next word. So I finished for him, matter-of-factly: '...tumor?' 'Yes,' he confirmed. 'And it's...' and again he seemed to be searching for the word. I said, '...malignant?' And he nodded his head. I believe he was on the verge of tears, while the opiates took the edge off for me. In any event, I repeat, as some of us like to say: I had *&!$#%$ cancer. Perhaps equally true or more so and only time would tell, cancer had me.

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  2. 2
    about 5 years ago
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    Decision Point

    Following diagnosis, I was advised that the doctors had surgery in mind, but that I would have to have the surgery before any attempt to see how successful chemotherapy and radiation therapy might be. The reason given was that this particular surgery would be rather intricate, including a nerve transplant, and would be inhibited in most probability by weakness to muscle and tissue resulting from those two therapies. I chose the most aggressive approach, first because my wife is a long-time nurse and hand-picked my doctors as the best in the area, and second because I wanted it removed physically and didn't feel that radiation and chemo would give me the same assurance that surgery would. Of coure, in hindsight, I know that surgery is not an 'assurance' either, but I still have no regrets about my choice.

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  3. 3
    about 5 years ago
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    Surgery

    Procedure or Surgery

    The biopsy did verify the existence of squamous cell carcinoma. I was soon transported to the hospital where my worked, for about two weeks, so that they could estimate my survivability re a long operation, so that they could wean me of cigarettes, so that they could wean me of alcohol, and so that they could let me eat for a couple of more weeks before they replaced at least half of my tongue. I endured an operation that lasted between 13 and 15 hours, depending on who you talk to, they replaced roughly half of my tongue with muscle and nerves from my left arm, and they took a slice out of my left leg in the event they needed tissue from somewhere else (they did not, but what the XXX, it was my leg, not theirs). Following the surgery, I was maintained in an unconscious state for four days, so that I would not move about, in the ICU. I then spent another week and a half or two in the hospital in various stages of opiated happiness, with a resolute effort to be cured at once, and experiencing wondrous and horrible conspiracies that were only in my mind. The surgery was such that even as just a result of the markup they do prior to surgery (indicating where the cuts will be), my tough guy dad reportedly left them room in tears. My brother made it until I arrived in the ICU, where he also left crying. The person who had the easiest job through all of this was me.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
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    Minimal Impact to Daily Life: Not Specified
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  4. 4
    about 5 years ago
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    External radiation

    Radiation

    I received radiation treatments, daily, for seven weeks. As a claustrophobe, I was not enamored of the idea of having my face pinned down to a table in a fiberglass mask for 30 to 45 minutes. In fact, I advised the medical folks I would rather die than go through this for seven weeks, but they opted to ignore me. From this, I can tell you two things: I had never taken valium before but suddenly realized it was one of the greatest inventions since the wheel, and, two, music is the greatest clock in the world. I calculated that every song was three minutes long, and used this to help me get through the dragging, dragging minutes to the end of each session. As time passed, I made the effort to reduce my valium dose, but never went without the music, and never really got used to being bolted down to a table. Of all of the experiences I had, this, the radiation, the mask, is the part I would least wish on anyone. And yet, if I can do it, anyone can. I'm not saying I did it with grace and courage, but I did it. (You should know: after the trial episode, I DID say I was going to have to die, because I was not going to go through this, and they finally offered me to stay in the hospital like the children, so that I could get drugs and so forth, and I actually said YES!!! That sounds good to me!!! And they shook their heads as if to tell me I was a wimp and then the doc said, "You are a wimp." Ultimately, I was not allowed that option.) I promise you, if I can get through this part of it, anyone can. It is not that it is painful or that the results are so dreadful, unless you find potential skin burning and fatigue dreadful. If you are not as claustrophobic as me, you should not find this so tough. I would advise that among your first questions of the radiation doctor are what sort of anti-burn treatment you should apply following every treatment (non-petroleum-based is important; Biafene, Aquaphor, and natural aloe seemed to be popular at the time of my treatment).

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    After release from the hospital and confirmation that all of my mad dreams were not true, I enjoyed chemotherapy: day-long lounges in easy chairs with needles in my arm and balloon-sized, well, balloons, filled with chemical wonders infiltrating my immune system. During all of this, I was taking the daily radiation treatments every morning, while the chemotherapy was once every couple of weeks. Battered and bruised physically and mentally, I headed straight into chemo and radiation. You know how I felt about the radiation. Truth is, for whatever reason, that entire first trip through Cancerland was not a time for questioning for me, for whatever reason, and I can think of several (reasons, I mean, not questions). I think the most prominent is that they were going to have to do whatever it was they did, and I could ask all of the questions I wanted to ask, but it wouldn't change the answers or the end results. The other primary one was that my wife had picked me these people as ostensibly the best at their jobs, including the OncoMan. So I didn't bother. It didn't matter. It simply never mattered. What mattered was living, or dying without pain. In between, it mattered, for sure, that I trusted my doctors from start to end and trusted the woman who selected them for me. So I was provided Cisplatin my first time through chemotherapy. Along with decadron, a steroid I did not get from Barry Bonds or his handlers (or from Roger Clemens or his trainers for that matter). I did not know why I was given decadron. I only know that I was given decadron along with the other goodies in my plastic baggies hanging above me like I was some MASH unit victim, and I know that the decadron is chief suspect in my ability on the day after chemotherapy to clean an entire house and ask what was next on the plate (I didn't clean an entire house, I just had the ability to :)). By day two following the chemicals, I was in a dark bedroom, windows shrouded, in a fetal position sucking my thumb and crying for my mommy. This lasted for about two days. No. It lasted for EXACTLY two days. And it happened through the holidays. I had my surgery in October, and went through radiation and chemotherapy beginning in November and wending its way past New Year's. It seemed that every time we had a major holiday (and there are at least three of them during that period) I was ill. In addition, they were eating, and my melon-sized head wasn't up for that. So I had sufficient reasons to feel sorry for myself and took them. But you must cut me at least a bit of slack here: imagine liking to eat (as I do and did) and imagine having all of your family together in the dining room, the clinking of silverware and glasses and pots and pans, the aromas wafting through the air, the snippets of conversation heard, the laughter and even the silence...while you are huddled up inside of blankets and quilts in a dark bedroom, trying to hold down what is virtually nothing in your stomach but compazine or fenergin and some water and/or sports drink ("You need the potassium!"). That can get rough, unless you don't like your people. I love mine. I found out all of this was because I was taking cisplatin. So I have been told in recent times, as I finally begin to ask questions. What happens is that my medical professionals, my doctors and my nurses and my chemo staffers tell me that cisplatin is one helluva tough chemical. A point to add regarding the steroid: The thing is, after the chemo session, I became a rather driven individual. My wife could wake up on the morning with a completely rearranged home around her and more clean towels than she has room to store. (You see, there is a purpose for everything, and the purpose for dirty linens is that there is not room for all of the linens in the linen closet. It has taken me all of these years to discover this particular sort of yin/yang principle of laundry.) I got into a warped time cycle as a result. The Vampire Cleaning Guy. My neighbors started to wonder exactly what it is I was doing out in the flower beds in the dark at two in the morning. I SHOULD have been stealing their flowers and shrubs to cut my overhead, but I'm not quiet enough for that and they were, after all, likely to recognize them, even in the new environment. In this cycle, I was apt to roam the halls at night, throwing unsuspecting dish cloths into the washer, cleaning one of my son's shirts for the eighth time this week even if he hadn't worn it yet but simply thrown it around because that's what he does with clothes, moving photographs from one room to another for no particular reason and, especially, rearranging furniture, especially the stuff that my plants sit on. I stayed away from mirrors :). It's not a great cycle to be in. You catch the dawn but miss the day. The telephone, during the day, becomes an evil monster as loud as a neutron bomb and everyone on the other end is evil personified including your relatives but particularly those people calling to sell you something who don't even know how to pronounce your name and, frankly, things can get ugly :). There is a silver lining everywhere, if we will only look :).

    Easy to Do: Not Specified
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  6. 6
    about 5 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    OncoMan has a floor level for white blood cell counts. In my case, every time I entered the Chemo Palace for treatment or even for just an exam, I have had blood tests prior to either therapy or chatting with OncoMan. Among the tests they do, they check for low white blood cell counts (WBCs) and low platelets (low platelets :)). If either fell below the floor, and this does happen, and not uncommonly, then OncoMan held off on chemo and rescheduled. I didn't worry about that rescheduling, in fact felt as though I was getting a vacation. If the problem was platelets, I got some time off while they self-rejuvenated. If it WBC, then I received Neupogen shots (some got the other one, Neulasta), and was rescheduled for a much quicker return. I even got a Charlie Brown bandaid :). Some find that these shots give them nausea, but I noticed nothing like that, maybe a bit of fatigue and flu-like symptoms, as in sore bones from head to toes. But for me it was all bearable.

    Easy to Do: Not Specified
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  7. 7
    about 5 years ago
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    Depression medicine

    Drug or Chemo Therapy

    Depression is a tough subject, and a dangerous one. Allow me to present my credentials with respect to discussing this subject: I am not a therapist, although I have bred one :); I am not a medical professional, although I am married to one; I am not a psychologist although it was one of my majors in college until I realized that my psych professors were NUTS; and, on top of that, it seems like at least half of the people I've known for the last 10 or 15 years are taking something for something, which also does not qualify me to speak on the subject. But a guy I talked to for a time suggested that I have been clinically depressed since I was six years old. It turns out that he has left the business and, I think, was nervous about my energy level from the start anyway, but still, he had a PhD and said that to me, about being six when I began to develop the disease, while his cohort, the psychiatrist, issued me anti-depressants and charged me for visits where he simply asked how I was. I would say, "I'm fine!" and he would write a script, and that was the end of that encounter that month. No wonder they get the big bucks! The other guy, though, the PhD, he WAS interesting, and he seemed to be honing in on something. Sometimes, when I think about the dangers of cancer and radiation and chemotherapy and all of that, I shake my head when I think of him, and wonder if trying to figure out the mind is not the most dangerous thing of all. He was a timid soul, you see, and our deal ended the day I showed up unannounced at his offices for some other purpose (probably to see my drug dealer, the psychiatrist) and, seeing him in the parking lot as I was leaving, I jumped out of my car to say hello. Seeing me, he freaked out, acting like he didn't know me and running, actually running, into the building. I was depressed :). I thought we were friends, after a fashion. But, this is about cancer and depression. Not about nuts :). I have read some conflicting literature about the relationship between cancer and depression, about the relationship between chemotherapy and depression. And I have met people who are living proof that being a cancer survivor, being a chemotherapy survivor, leads not to depression. I will leave the issue of chemotherapy alone here. I have had my share of chemotherapy and I'm having it again as I write this, but I am not qualified to state that it has something to do with depression. Okay, I'm not qualified to say that anything has anything to do with depression, but I will, anyway. Just not chemotherapy and here is why: I can't figure out chemotherapy. (Actually, if you've read my thing here from beginning to now, you have pretty much realized that I do not have ANYTHING figured out. Still, it is fun to conjecture.) I have been a caregiver, in the sense that my mom had breast cancer in the mid-70s and then, in the 90s, had ovarian cancer and eventually died of brain cancer that turned out to be the metastisis of BREAST CANCER rather than ovarian, which, when I learned this fact years later, blew me away. I always thought it was the ovarian. I have been a caregiver in the sense that I was holding my mom's hand as she lay pretty much comatose and gone on a gurney in the family den before I finally fell asleep, only to be wakened by my dad, in the early morning, on the floor next to my mom, (me, not my dad) to be told that she had died. I have NOT been a caregiver in the way that my dad was, or in the way that my wife is and has been. I did little more than love my mother, in other words. While my dad did the real work and did it for an extended period of time, even shaving his head, as I reference somewhere above, not looking like a goofball at all, as I think about it with more care, but like a nobleman and a lover, which he certainly was and is, as it turns out. I did little more than love my wife and ail (and wail and rail and try to bail), while she took care of me (without fail :)). I bring all of this up because I have been a caregiver in those two senses, that I have loved those afflicted with cancer, and have loved a caregiver to one who has endured it as well, that my mother died of cancer, that my sister survived breast cancer and that I cared for both of them, that I loved them both (and love them still, the present tense most important in reference to my sister, who is doing just fine in terms of physical recovery from cancer), and that I continue to marvel at the strength and patience of my wife. And I was depressed before I ever thought about cancer. Just to be honest. Which is hard to do when you are talking about your own mental health, there being a sort of sanctity of the mind, a barrier that we erect, most of us, against the outside world. Some very gifted writers and poets have broken the barrier, of course, and have relayed to us through their brilliance that depression is there, and that it should not be hidden behind the closed doors of our minds. So I write on here in their spirit, and in their honor, and in response to a friend of mine who used to haunt this site who told me it was the right thing to do. I believe her. As I said, there is conflicting literature about the relationship between depression and cancer. It is acknowledged, I think, that cancer HAS a relationship with depression. In my reading of late, the wonks like to say that you might experience a temporary depression as a result of this cancer thing. And there is some acknowledgement as well that chemotherapy, some of it, may cause depression somehow, although OncoMan denies it, as he denies that ANYTHING is caused by chemotherapy but healing. Here is my take: I don't care who you are, if someone tells you that you are going to die, that is going to be fairly depressing. Being told you have cancer, in our society, and with our understanding of it, so much of the real knowledge hidden, of course, is reason enough to believe, upon the grand announcement, that you are going to die. It is not, after all, as if you have been studying cancer your entire life (most of us, anyway). It can NEVER happen to us, can it? And so we do not know much about it when we are told, and what we do know is that some people happen to die from this stuff, and that even the rich and famous are not immune from that result. Being told that you have cancer does not mean that you are going to die (being told that you are going to die does not mean that you are going to die, either, as I discovered). But the thought flashes through your mind. Before you hear anything else, if, indeed, you are sufficiently strong to HEAR anything else, you first think, Oh my God, I'm screwed! If you are a caregiver, you think, instead, Oh my God, we're screwed! Or, maybe, Oh my God, he/she is screwed! :) Or maybe even, Oh my God! I hit the lottery with that insurance policy! Whatever is on your mind at that moment, life has changed dramatically, and life will never be the same, regardless of what anyone says to the contrary. Life will never be the same. And that can be for better or worse, but it will never be the same. Philosophically, of course, one could argue that every moment in your life is one that alters your life forever, and I agree, but let's not go there now because I'm not up for that. The point is, there are momentous moments in your life, getting married, the birth of a child, the death of a loved one, a graduation, whatever, and being told you have cancer is absolutely one of those moments. I would say that with the exception of the birth of a child, all of them can be depressing :). I mean, you get married, you have to be somewhat tentative, right? And watching a child graduate sort of dates you, doesn't it, is rather a bittersweet moment. But I digress. As usual. Being told that you have cancer is a bummer, and there is no one out there that can argue otherwise. I venture to say that no one went dancing out of the doctor's office singing that he or she had cancer. Arguably, being wed can be a happy experience :). Watching a child graduate may mean good things :). But being told you have cancer just doesn't have any positives attached to it. (Note that I said being TOLD you have cancer doesn't have any positives attached to it. HAVING cancer, I am here to tell you, may actually have some positives attached to it, believe it or not. Okay, I don't believe it either.) Being depressed is a natural return on that deal. But as the medical folks will tell you, there is a difference between feeling depressed and being clinically depressed. Most of us, thankfully, will feel some depression, maybe even for awhile, but will then move on. Survivors and caregivers both. Even so, temporary or the clinical deal, the docs seem to shrug it off. I advised my docs after the first event that a psychologist should be a part of his team. You see, he was well organized, and hand-selected every single person involved in my care. But there was no Head Doctor. When I told him that he should include one, he seemed to agree, and as I understand, he has now handpicked a social worker, but that is not the same thing. Some of us need information about where to go for help with payment and food and drugs and all of that and I am not making shortshrift of that, for that is an important element in recovery -- not worrying about that stuff -- but I am talking about the personal mind of the personal survivor. I am talking about me. And you. And I am saying that a Head Doctor would probably be a good thing. Let's start with the announcement. 'You have cancer.' How many people say, 'Okay, cool. How am I doing otherwise?' Not counting people who were drunk or stoned or otherwise outside of the realm of what we normally consider reality? (And I add this caveat because I WAS fairly outside the realm of what we normally consider reality, first time around, but only because I already had a feeling that the news would not be good.) I can't get past this. I apologize, I do, but I simply can't get past this. I try and I try, but the truth is, this is such a devastating announcement that it defies words, and I cannot come up with adequate words to convey what it means. If you are a survivor, you know what I'm talking about. If you are a caregiver who was in the room when the announcement was made, you have an inkling at least of the power of the words. 'You have cancer." It blows you away. What I'm getting to is Post Traumatic Stress Disorder, but give me a minute or so. After the announcement, you get to hang around and wait. And wait. And wait some more. If you get surgery, then you are in a knife fight that you can not win. One, you are unconscious. Two, the other guy has a knife and you do not. Three, he is awake and has helpers and you are not awake and have no helpers. Four, you are in a knife fight that you can not win. Talk about your PTSD! If you get radiation, that is another story all together. I do not know what others have experienced. I had to wear a mask. I would rather lose a knife fight and DIE. Okay, not die, but come close to it. Instead of the mask. But even if you didn't get the mask, how nice it is to know that you are being microwaved? Has anyone had radiation without thinking of popcorn burning and blowing up in the microwave? Has anyone had radiation without thinking of burnt chicken legs? Dry soup? (I made that one up.) Explosions that you have to explain to mom? Egg art for example inside the machine? Okay, I didn't think of any of those things, but that was because I was wearing the mask and that sort of consumed my thinking entirely. I DID think of Poe, and of Dumas, assuming he wrote the story about the guy in the iron mask. I don't keep up like I used to. Some people talk to me about cooked lungs. Cooked lungs. And some people tell me their butts were fried. Fried butts! Am I getting across here? Of course this is depressing. Who wants to wear a mask? Who wants cooked lungs? Who wants fried butt? (Excluding certain hunter-gatherer types of folks I know.) This is not a diversion from the topic...this stuff is perfectly understandable reasoning for depression. And yet, most cooked lung and fried butt folks I know are not depressed. So it is not just that. That is not enough. There IS chemo. I said I wouldn't talk about it, and I won't, not in the scientific way. I will only say that if the chemicals don't kill you (and that is what they are designed to nearly do, after all) hanging out with dying people will get you close. I don't mean to be cruel. I like dying people. Some of my best friends, it turns out now, are dying people. As a matter of fact, everyone I know is dying, but that joke gets old, doesn't it? You know what I meant. Some of my friends are dying, and there is no better place to find such friends than in a Chemo Palace (okay, some of you may argue that going to a bar late at night will give you better odds, but I am not here to debate). Chemo will depress you. Beyond the chemicals themselves, which are certain to do a job on you, there is the atmosphere in the Chemo Palace. But we've explored that. I need a rest. I am feeling rather manic at the moment :).

    Easy to Do: Not Specified
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  8. 8
    about 5 years ago
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    Pain medicine

    Drug or Chemo Therapy

    I am a strong advocate of pain management. Not just getting pain medications when you feel pain, but of management of your pain medication so that it relates to where you are in your treatment and post-treatment timeline, and so that your doctors can not only appreciate what is required, but what the signs are if you are over-doing it, for your own preservation. I believe that pain management, successful pain management, helps you to survive. In my own case, with two cancers in just a couple of years, the only time I really wanted to cave in when the pain was such that I could not tolerate it. I have been on morphine, fentanyl patches, oxycontin, oxycodine, percocet, you name it, I've probably had it. I have always followed the prescriptions, meaning, incidentally, that I didn't skip doses to see what would happen, or because I am a tough guy or because I feared addiction. Any time I failed to take prescribed doses of either pain meds or anti-nausea meds, my doctors paid no price, but I typically did. In the end, I was not an addict and, with my doctors' okay, was allowed to wean from them at my pace...but only after talking to them. I recommend highly that you NOT take pain management lightly, which means not taking pain meds lightly. Please bear in mind that the management is the key element.

    Easy to Do: Not Specified
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  9. 9
    about 5 years ago
    soccerfreaks' Avatar

    Other

    Other Care

    Depending on the nature of your treatment, you may expect dilations to expand your esophagus to help you swallow. I have had several and some of them or less fun than others, but that is largely because the ones where I am not immediately asleep also include investigation of my lungs, wherein another -oscopy is involved. With head/neck cancer, you can likely expect endoscopies, some of which may include dilations, the attempt to expand your esophagus so that you can more easily swallow. Generally, if such is the case, you will receive a number of these, as they don't want to do to much at one time, they do not want to blow up your throat, to be honest. In my experience, these have not been painful, but others have complained of sore throats and such. Perhaps I have a high pain threshhold. You might enjoy barium swallow tests, wherein the powers that be have you swallow some sort of tasty barium stuff to coat your oral area, and then watch an ultrasound while you attempt to swallow other liquids along with some solids if you are up for that. (I typically was permitted to watch mine live.) This is not pass/fail. If you are not able to do certain things, they will point out to you, via a review of the ultrasound, how you are not succeeding, and what you might do to improve. You might get some speech therapy as well, depending on treatment, and you might even get some physical therapy if called for, to help open your mouth more in a least intrusive way. Such PTs were hard to find six years ago, and I was fortunate to have one, but there are more of them available today, as I understand it. You are likely to experience a number of visits from NostrilDamus, my name for the thing they stick into your nose to get to your oral cavity and throat, this while completely awake, saved only mildy by the so-called numbing agent that is supposed to taste like apples but really doesn't. These are not comfortable, but also are not so painful. The worst of these for me was the gagging instinct I seem to possess in more intensity than others (such that there were tears, but, really, not tears of pain). There are, of course, the CT scans and the PET scans. I know the difference between the two, but am not sure why one is preferred over the other at one time or another. The basic thing to know, in my opinion, is that just one of these scans typically tells them very little. It is reading the difference between an interesting spot between scans that tells them volumes. So you need to be at least a bit patient. My scans were typically every three months for the first couple of years, then every six months for the next three years. Finally, do not be surprised if your dental work increases, both before and after treatment. Radiation, especially, requires a thorough, an absolutely thorough cleaning prior to treatment, and is equally responsible for further dental work after treatment: as time goes by, regardless of how well you treat your teach, and you should make every effort to do so, there is the possibility that rad therapy will do some further damage. Get yourself a couple or three different toothbrushes for different purposes, get some toothpaste and mouthwash that enhance moisture, and be zealous about taking care of your teeth.

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  10. 10
    about 5 years ago
    soccerfreaks' Avatar

    Other

    Other Care

    Depending on the nature of your treatment, you may expect dilations to expand your esophagus to help you swallow. I have had several and some of them or less fun than others, but that is largely because the ones where I am not immediately asleep also include investigation of my lungs, wherein another -oscopy is involved. With head/neck cancer, you can likely expect endoscopies, some of which may include dilations, the attempt to expand your esophagus so that you can more easily swallow. Generally, if such is the case, you will receive a number of these, as they don't want to do to much at one time, they do not want to blow up your throat, to be honest. In my experience, these have not been painful, but others have complained of sore throats and such. Perhaps I have a high pain threshhold. You might enjoy barium swallow tests, wherein the powers that be have you swallow some sort of tasty barium stuff to coat your oral area, and then watch an ultrasound while you attempt to swallow other liquids along with some solids if you are up for that. (I typically was permitted to watch mine live.) This is not pass/fail. If you are not able to do certain things, they will point out to you, via a review of the ultrasound, how you are not succeeding, and what you might do to improve. You might get some speech therapy as well, depending on treatment, and you might even get some physical therapy if called for, to help open your mouth more in a least intrusive way. Such PTs were hard to find six years ago, and I was fortunate to have one, but there are more of them available today, as I understand it. You are likely to experience a number of visits from NostrilDamus, my name for the thing they stick into your nose to get to your oral cavity and throat, this while completely awake, saved only mildy by the so-called numbing agent that is supposed to taste like apples but really doesn't. These are not comfortable, but also are not so painful. The worst of these for me was the gagging instinct I seem to possess in more intensity than others (such that there were tears, but, really, not tears of pain). There are, of course, the CT scans and the PET scans. I know the difference between the two, but am not sure why one is preferred over the other at one time or another. The basic thing to know, in my opinion, is that just one of these scans typically tells them very little. It is reading the difference between an interesting spot between scans that tells them volumes. So you need to be at least a bit patient. My scans were typically every three months for the first couple of years, then every six months for the next three years. Finally, do not be surprised if your dental work increases, both before and after treatment. Radiation, especially, requires a thorough, an absolutely thorough cleaning prior to treatment, and is equally responsible for further dental work after treatment: as time goes by, regardless of how well you treat your teach, and you should make every effort to do so, there is the possibility that rad therapy will do some further damage. Get yourself a couple or three different toothbrushes for different purposes, get some toothpaste and mouthwash that enhance moisture, and be zealous about taking care of your teeth.

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  11. 11
    about 5 years ago
    soccerfreaks' Avatar

    Finished treatment

    Celebration

    I visited ENT Man on Tuesday. As per the norm, I arrived early so that he could see me more than an hour later. Fortunately, CNN was on the television rather than Sesame Street so I was able to watch the Egyption Riots Reality Show rather than Bert and Ernie. This assisted in my remaining for more than my usually self-defined 30 minutes of ignoring the value of MY time. When finally I got past ENT Man's new nurse (I really liked his old one, but as I have remarked in the past, she was looking really beaten down by the job so I am elated that she survived to retire. I hope that she is on a warm beach somewhere with umbrella drink in hand), I still had time to check the room. I looked high and low for NostrilDamus and didn't see him anywhere which is always a good sign. I DID get weighed and am down to 143 lbs. When this saga began, back in September of 2005, I was a rather robust 215 lbs. I lost 75 lbs during the head/neck commotion, but had gained back to 170 lbs when the lung thing occured. I came out of that one, staph infection included, at again somewhere in the 140s. Just prior to losing my last tube, however, I was at a moderately acceptable 163 and it appeared that any nutrtional worries were behind me. So. 143 lbs. ENT Man made note of that immediately. Not acceptable. May need to reinsert tube if things don't get better, even though he knows I do not want that. He also noted his surprise that I was still in the building, in homage, I suppose, to my legendary ability to leave if not treated within 30 minutes of announced appointment time. He did not sound bitter but rather amused (which is difficult to detect in light of his almost stony stoicism). He then got down to business, using the oversized popsicle sticks to probe high and low east and west and apparently satisfied with what he saw (more importantly, perhaps, what he did not see), pronounced me all clear, more than five years after diagnosis, more than five years after my last treatment for head/neck cancer. All clear. He made a rather scandalous remark about that '10 months to live' diagnosis ("So much for that diagnosis," he practically spoke to himself), which surprised me since these folks generally present a united front among us commoners. He asked if I wanted another dilation, and I jumped at that. He also insisted upon a dietician and asked if I had had a thyroid test done lately. I advised that OncoMan, was on top of that one, and that I was apparently fine. I shook hands with ENT Man a second or two longer than usual, said thank you a couple of times, and he said I knew where to find him if I needed him. Driving away, I realized that cancer has now been a part of nearly 10% of my entire life. That's quite a piece of personal history to say goodbye to. A couple of more years, and maybe I will be doing the same with OncoMan and closing this chapter altogether. As one of my doctors said not too very long ago, "You're a lucky man." Yes, indeed. Somehow, so far, I am finding a way out of here.

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  12. 12
    about 4 years ago
    soccerfreaks' Avatar

    cancer-free

    Celebration

    OncoMan advised me that I am not just cancer-free but 'cured', something I never thought I would hear.

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