OK, Campers. It is now Saturday, May 31, or the end of my second week without the treatment of fire and poison. (Kudos to Susan Clark for that description. . . ;-) Progress is slow, but it is still progress, nonetheless. As I still run to being zombie-tired on occasion, this missive will lapse into stream-of-consciousness, I'm sure. For that, I apologize, and I'll do my meager best!
But there have been occasional bright spots. This past Wednesday, for instance, I pretty much stayed awake the entire day, left the house for a quick errand with my friend Will, did all sorts of little things around the house, and watched two episodes of 'Brother Cadfael' with Will. That was the high point, and I've returned to feeling tired most of the day since then, though I can say that the pain is lessening by the day. One more time, baby steps are what should be expected.
But I guess I have been having flashes of anxiety for some of the oddest reasons. Since my throat still hurts, I have been limiting my 'food' intake to my 'formula' through my feeding tube. I'm OK drinking and there are no problems swallowing, it;s just that it is still difficult to do. But, I'm going to have to get interested in eating sometime soon. But, I'm not sure when the best time would be, what I would want to eat, and whether or not I should cut back on how many boxes of the Boost I ingest. Sort of a strange dilemma. I'm getting better but don't quite know what to do next 'cause I'm off script. There are no doctors telling me what to do every day. And that's another part of the anxiety. I want to talk with my medical oncologist or his nurse, but don't know what I want to ask. (Remember other times when I said that my thoughts would not be rational? Well, this is another of those times. . . . ;-) I do have my next appointment with him on June 10, and I'm sure I will have things figured out by then, quite possibly calling for advice somewhere along the line. I guess the bottom line is, I'm also sort of surprised that it may take longer that I anticipated for rational thought to come back. . . ;-) We shall see, I suppose. . . .
Well, just wanted to let you all know I'm still out here.
Peace and love to all!!!!
Joe
Saturday, May 31, 2014
Wednesday, May 28, 2014
The Wall of Victory!!
Just one more thought. . . Way back when, I probably re-iterated something I learned when I went through this with David those ten years ago. I've said, and keep telling people, that the actions of others will surprise you, and it goes both ways. People that you never expected to hear from step up in ways you may have never imagined; conversely, people you expect to be there are absent.
And, as is often the case, I find now that the truth is firmly somewhere in the middle. Again, as has been the case, my current condition is mellowing my thinking. What I'm learning is that cancer, or any life-threatening disease, in a family truly does change the way you see lots of things. And, in many cases, I'm finding that even people who's thoughts and prayers are with you every step of the way will not talk about it, nor will they step up and offer well-wishes or to do something, not because they don't want to, but because it reminds them too much of their own memories, or their fears if they have not yet had first-hand experience. To say it simply, your situation makes them uncomfortable, and like many of us in that situation, they shut down to you. Now, I would bet that many of those folks would do anything you asked, if you asked. But they will not take that first step.
And that is understandable. I know, and others have noticed this too, that there have been cases that I have been introduced to folks that have lost a child or have one who has been afflicted with a potentially fatal condition. I would typically make the offer that they can talk to me anytime. In many cases, people thank me and then kind of move away on the Group W Bench as I have branded myself as a pariah, Especially if their child is still alive. And, after a while, I began to understand. They don't know where I'm going to go. They don't care to find out if my message is positive or not. All they know is that my story didn't end well and that's not want they want to be talking about. And I can appreciate that. Like I say, this second go-round is filling in the learning process that began with David. Hopefully, there will be no more of these dreaded and feared learning experiences
Peace and love to you all!!!!!
Joe
Tuesday, May 27, 2014
Moving Along
Well. Campers, don't you hate it when other people turn out to be right?? I had sort of been hoping that the doctors had been pessimistic when they told me that I would still be feeling the effects of radiation for the first two weeks after it ended. I, of course, figured that was just a scare tactic and I would start making miraculous progress, in leaps and bounds, during that period. Well, not so much, I fear. . . Oh, I'm a little better each day, and that will do. But. . . .
But I am healing. Oh, I'm still tired a lot and have no idea when I'll feel safe driving. My throat is still raw and very sore and I'm 'eating' practically everything through the feeding tube. But, I am able to swallow liquids with no difficulty and little pain, so I don't think there will be any long-term problems along those lines. So, all in all, I'm pretty happy. Especially when I see all the ads for medical centers and what-not on daytime TV and all the news stories about the terrible things that people are going through. As Elaine and pointed out, and I have mentioned in these pages, a year from now, this part of my life will be mostly unpleasant memories. The year will end on a high note as we will be welcoming a new grandchild into the family and, hopefully, all the kids should be home for at least part of the holidays. And since it's always about me, I'm looking forward to feeling better by then that I have in many, many months.
Peace and love to all!!
Joe
But I am healing. Oh, I'm still tired a lot and have no idea when I'll feel safe driving. My throat is still raw and very sore and I'm 'eating' practically everything through the feeding tube. But, I am able to swallow liquids with no difficulty and little pain, so I don't think there will be any long-term problems along those lines. So, all in all, I'm pretty happy. Especially when I see all the ads for medical centers and what-not on daytime TV and all the news stories about the terrible things that people are going through. As Elaine and pointed out, and I have mentioned in these pages, a year from now, this part of my life will be mostly unpleasant memories. The year will end on a high note as we will be welcoming a new grandchild into the family and, hopefully, all the kids should be home for at least part of the holidays. And since it's always about me, I'm looking forward to feeling better by then that I have in many, many months.
Peace and love to all!!
Joe
Saturday, May 24, 2014
Given the Choice. . .
Once again, I want to thank everyone for their kind words, cards, and letters!! And, yes, there have been those delightful articles of physical mail, delivered by a uniformed government employee. There's still something special about opening those, no matter how old I am. . .
But, I have to admit that while I certainly appreciate the accolades, I am also humbled by them. Yes, I think that I'm handling the situation with as much strength and grace as I can muster, but no more than any one of you all would if you had to. And that's one thing we must all remember, to never sell ourselves short, but that that's a different story for a different day. . . But as I first remember saying to people ten years ago, when my son David was going through his ordeal with this deadly disease, that we never know how much we can handle until we have to, at which point we are often astonished. Neither then, nor now, do I recall getting a choice in the matter. "Gee, Monty. . . That car is really cool and that trip sounds way cool, but I'm going to go for the potentially fatal disease and its attendant pain and suffering behind door number three. . ."
I will admit this freely - I am a major weenie and had I been given the choice, I would have definitely opted out. . . But, since there was none, I will meekly submit and continue to cope to the best of my meager abilities. And, believe me when I tell you this - I have no doubts that any one of you would step up to whatever vile situation you may find yourselves in. But. . . I'm going to be way, way happier if I never get the opportunity to prove that I was right about that. In this case, ignorance IS bliss.
Peace and love to one and all!!!
Joe
But, I have to admit that while I certainly appreciate the accolades, I am also humbled by them. Yes, I think that I'm handling the situation with as much strength and grace as I can muster, but no more than any one of you all would if you had to. And that's one thing we must all remember, to never sell ourselves short, but that that's a different story for a different day. . . But as I first remember saying to people ten years ago, when my son David was going through his ordeal with this deadly disease, that we never know how much we can handle until we have to, at which point we are often astonished. Neither then, nor now, do I recall getting a choice in the matter. "Gee, Monty. . . That car is really cool and that trip sounds way cool, but I'm going to go for the potentially fatal disease and its attendant pain and suffering behind door number three. . ."
I will admit this freely - I am a major weenie and had I been given the choice, I would have definitely opted out. . . But, since there was none, I will meekly submit and continue to cope to the best of my meager abilities. And, believe me when I tell you this - I have no doubts that any one of you would step up to whatever vile situation you may find yourselves in. But. . . I'm going to be way, way happier if I never get the opportunity to prove that I was right about that. In this case, ignorance IS bliss.
Peace and love to one and all!!!
Joe
I Have Glimpsed the Future. . .
Yes, Campers, I have seen my future, and it is delightful!!!!!
About 6 AM or so, I got up for a bit while Elaine prepared to go into work. And I realized something very different. But it just seems that the planets were properly aligned (as well as my pain killers all peaking at the same time) and I felt absolutely no pain and my throat was pretty much mucous-free. It was nirvana. . .
Now, I didn't allow myself to get to excited, nor did I even tell Elaine about it till later 'cause I knew that it would just pass. But, I had a few minutes reprieve and managed to focus my eye on the prize one more time.
BTW, I want to thank all of you out there for your kind words and comments. Sometimes fan mail is all that keeps us cancer patients going!!
Peace and Love to All!!!
Joe
About 6 AM or so, I got up for a bit while Elaine prepared to go into work. And I realized something very different. But it just seems that the planets were properly aligned (as well as my pain killers all peaking at the same time) and I felt absolutely no pain and my throat was pretty much mucous-free. It was nirvana. . .
Now, I didn't allow myself to get to excited, nor did I even tell Elaine about it till later 'cause I knew that it would just pass. But, I had a few minutes reprieve and managed to focus my eye on the prize one more time.
BTW, I want to thank all of you out there for your kind words and comments. Sometimes fan mail is all that keeps us cancer patients going!!
Peace and Love to All!!!
Joe
Thursday, May 22, 2014
Managing Expectations. . .
OK, Campers. . . Even though the subject implies a rant in business-speak, it will not be. . .
But, I have been made aware that there are parallels between the world of recovery from a dread disease and normal day to day life. . . Yes, that is truly profound, but hear me out. . .
And it's one more instance of how much smarter Elaine is than me. . . Anyway, as you know by now, my formal treatments are over and I'm into the process of recovering from both the disease and the treatments. And, since I'm a rather impatient lad, I'm expecting the process to be quick. Digressing, recovery from a disease is primarily regarded as a physical exercise, but the mental aspect is equally vital and, in some ways, even more important. And, as Elaine has pointed out to me many times, I am not setting a reasonable expectation level. So that is what I'm trying to work on these past few days. I am making progress in recovery, but not the quantum leaps I had initially been hoping for. So, I have learned to become quite happy with small steps. For instance, ever since the radiation began, my mouth has been beastly dry. A couple of days ago, I noticed that my mouth has not been as dry. So, at first, I expected all the dryness to be gone by the next day, which was an unreasonable expectation, but I had it anyway, and, to the surprise of no one, was disappointed. But, if I alter my level set to 'hmmm, my mouth is still dry, but not as dry as yesterday. Let's hope that tomorrow's improvement comes close to that.' Much better!!! I feel a little better each day and I'm not fighting off disappointment and anxiety.
A simple lesson, but a valuable one.
Peace and love to one and all!!!!!
Joe
But, I have been made aware that there are parallels between the world of recovery from a dread disease and normal day to day life. . . Yes, that is truly profound, but hear me out. . .
And it's one more instance of how much smarter Elaine is than me. . . Anyway, as you know by now, my formal treatments are over and I'm into the process of recovering from both the disease and the treatments. And, since I'm a rather impatient lad, I'm expecting the process to be quick. Digressing, recovery from a disease is primarily regarded as a physical exercise, but the mental aspect is equally vital and, in some ways, even more important. And, as Elaine has pointed out to me many times, I am not setting a reasonable expectation level. So that is what I'm trying to work on these past few days. I am making progress in recovery, but not the quantum leaps I had initially been hoping for. So, I have learned to become quite happy with small steps. For instance, ever since the radiation began, my mouth has been beastly dry. A couple of days ago, I noticed that my mouth has not been as dry. So, at first, I expected all the dryness to be gone by the next day, which was an unreasonable expectation, but I had it anyway, and, to the surprise of no one, was disappointed. But, if I alter my level set to 'hmmm, my mouth is still dry, but not as dry as yesterday. Let's hope that tomorrow's improvement comes close to that.' Much better!!! I feel a little better each day and I'm not fighting off disappointment and anxiety.
A simple lesson, but a valuable one.
Peace and love to one and all!!!!!
Joe
Tuesday, May 20, 2014
Let Recovery Begin!
Well, Campers, it has been four days since the end of radiation and today was my first follow-up doctor appointment since then. I have to admit that the recovery process will be longer and more arduous than I had imagined. The past Saturday and Sunday were quite possibly the most miserable two days I have spent since treatment began. But. . . It sure beats not being cured. It is now Tuesday evening, a little after 8 PM, and I must say I feel pretty good. But, as Elaine pointed out, there will be bearable days and there will be not so bearable days. The payoff is that the bearable days will begin to outnumber the not so bearable ones.
My appointment today with Dr. Russell was most interesting and informational. For instances, even though my body is not being fried daily, the effects of the radiation will continue to work for weeks, if not months. And even though the plan for patients with my strain of the disease and treatment protocol is for three weeks of chemo, the norm is that most don't get the third treatment. I was one of the 30% of 'over-achievers' who was deemed able to handle the third week. I can claim no credit, I must say - I just assumed that the third treatment was a given.
And, for the most part, I'm pretty much right on schedule for where I should be along the recovery road. It will be a long process and there is just no magic that will speed it up. But, it sure beats any of those alternatives that do not include being cured!!!! The PET Scan that will tell the tale will be scheduled for mid-August, or three months after the end of treatments - which makes sense since the treatments are still doing their thing for those extra weeks.
I'm getting tired and notice that I'm rambling. I'll spare all of us and sign off here.
Peace and love to all!!!!
Joe
My appointment today with Dr. Russell was most interesting and informational. For instances, even though my body is not being fried daily, the effects of the radiation will continue to work for weeks, if not months. And even though the plan for patients with my strain of the disease and treatment protocol is for three weeks of chemo, the norm is that most don't get the third treatment. I was one of the 30% of 'over-achievers' who was deemed able to handle the third week. I can claim no credit, I must say - I just assumed that the third treatment was a given.
And, for the most part, I'm pretty much right on schedule for where I should be along the recovery road. It will be a long process and there is just no magic that will speed it up. But, it sure beats any of those alternatives that do not include being cured!!!! The PET Scan that will tell the tale will be scheduled for mid-August, or three months after the end of treatments - which makes sense since the treatments are still doing their thing for those extra weeks.
I'm getting tired and notice that I'm rambling. I'll spare all of us and sign off here.
Peace and love to all!!!!
Joe
Saturday, May 17, 2014
The Bell Tolls for Thee!!!
Well, Campers, on Friday, May 16, 2014, at about 9 AM, I got to ring the bell after the completion of my last radiation treatment!! The object in my left had is the mask that they used to attach me to the table to hold me in place while the radiation was occurring. And, yes, is was as comfortable as it looks. . . ;-)
Thoughts?? I got a million and I've got nothin'. Relief to be done, to move ahead, to explore the next level. In an interesting adaptation of Charles Dickens, the next few days of the process will be the best of times and the worst of times. The worst of times in that this will truly be the lowest point - 35 radiation treatments and 3 weeks of chemo have been administered. My body has taken on the full load of poisons that it can bear. And it doesn't realize yet that it's not going to get any more. For the past few days, I've probably slept about 20 hours a day. When I'm not asleep, I'm feeding and/or feeling nauseous. BUT. . . Somewhere in the next couple days, the old bod will realize that it's not got to be asked to ingest anymore vile substances and will begin the arduous process of healing and recovering.
Then, the waiting game begins. . . Over the next few weeks and months, I will make periodic trips to Moffitt for check-ups and evaluation. I'm not sure when yet, but somewhere out there will be another PET Scan. That, my friends, will tell the tell the tale. If medical science has performed the magic that I think is has, I will be pronounced to be clean, or in remission, or some such, and will start the five year journey required to be officially called a 'cancer survivor'. Note that at this point, we're not even entertaining any other possibilities.
Given my habits of the past few days, I'd normally be asleep by now, so the rest of this will most likely meander. . . But I want to share the stories of a couple of my fellow cancer patients. There's Dan that just finished his third week of radiation for some sort of throat cancer. He's only having radiation, but no chemo. I spoke to him for the first time the first week he was there and he was having the same anxieties as I had had. So, he was the first person that I was in any way able to reassure that it will all work out. And, I do believe he will make it through. He's a really good person whose heart is in the right place. And Dan is the one other patient I will keep in touch with. He's a year or two older than I am and seems to be by himself. Unfortunately, he lives in Lutz (substantially north of Sarasota) so there's really no way I can drive up to visit him as I don't know when I'm going to feel safe driving again. But I will definitely find the time to call now and then..
Finally, life truly is a circle. On Thursday, which was my last day of chemo fluid infusion, I met a guy from Englewood who was there with his seeming girlfriend/significant other. Again, a couple of years older than me, but then who in Englewood isn't?? (Local joke. . .) Anyway, he was finishing his chemo infusion for his first week of chemo. He has the exact same strain of the disease as me, with a difference being that he was also a smoker. So, he has the same team of oncologists but he will be doing four chemo treatments instead of the three that I did. He was a little bit scared, I could tell, and it was good to be able to share with him. What's funny is that the doctors must be telling him the same things they told me, 'cause I would say something and his girlfriend would say something like;, 'See, that is what happens.' It was kind of funny and reassuring at the same time.
Well, gang, I'm on borrowed time. I'm hoping that this week turns things around and I have my first follow-up appointment on Tuesday. I will share more then.
Peace and love to all!!
Joe
Thursday, May 15, 2014
Ask Not for Whom the Bell Tolls. . .
Moffitt has a couple of quaint customs. . . When you complete a phase of your treatment, you get to ring a big, old brass bell on you way of the department. Well, today was my turn to ring the chemo bell! It was fun and sounded good!! And tomorrow, I not only get to ring the radiation bell, but will get an honest-to-goodness diploma, naming me as an official graduate of Moffitt's Radiation program. And the best part of all that is that I will be DONE with the grueling parts of the treatment. Now, as I keep saying, I have been assured that the effects of the treatment will linger for two more weeks before the healing begins. And I'm ready for that 'cause the ultimate payoff is that the healing WILL begin!!!
Peace and love to all as I look forward to that final treatment tomorrow!!!
Joe
Tuesday, May 13, 2014
The Last Chemo!
OK, Campers!!! So today ends the continued introduction of one poison into my body - I had my last actual chemo infusion, though I will have two more days of fluid replenishment on Wednesday and Thursday. And only three more radiation treatments!! The future's so bright, I have to wear shades. . .
And this week, both of my oncologists informed me that this week WILL be the worst of them all, The next two, following the end of formal treatment will still be bad, but this is the nadir. I have to say that I cannot dispute them, but, as I knock on a simulated wood-like substance, it still hasn't knocked me on my tail feathers, as I figured it would. Come close, but I still have enough left to fight back. . .
And, a few weeks ago, Elaine pointed out something that I can, likewise, not dispute. And that is the fact that even though I am grappling with a life-threatening disease, I'm going to come out of it with my health eventually intact and a few unpleasant memories, but generally better off than a lot of other people we've been seeing in the last few weeks. And that's just not cancer patients at Moffitt, but people on the streets in Sarasota, even in our own neighborhood. These are the people that are NOT going to get better, or the best that they can expect is to live in in a degraded physical or mental state with a diminished quality of life. These are people who are permanently crippled in some way, perhaps, Or the saddest case is our neighbor Shel, who lives across the street from us. He's probably a little younger than me and had been the picture of health. About a year or so ago, we noticed he was acting erratically and that his wife was doing all the driving. Well, it turns out, he developed some sort of early onset dementia. He will never get better.
Now, I'm saying that I will not have any lasting effects. It's still too early to know that for certain, though it doesn't seem they will be major. I will eventually be able to eat real food again. My voice my never again sound the way it did in my 'prime' radio years, and who knows what else? All part of the grand adventure. . .
And, like I also said before, I will come out of this with some unpleasant memories. But those will be far outweighed by the lessons I've learned about myself, my family and friends, and, corny as it sounds. life in general. And, I can say something that I said ten years ago, and for the second time in my life, truly mean it. Once again, I will come out of a pretty vile situation as the best person I've ever been. (Injection of levity from an old bumper sticker - 'Oh, no! Not another learning experience!')
Time to rest up for tomorrow's adventures!
Peace and live to all!!!!!!
Joe
And this week, both of my oncologists informed me that this week WILL be the worst of them all, The next two, following the end of formal treatment will still be bad, but this is the nadir. I have to say that I cannot dispute them, but, as I knock on a simulated wood-like substance, it still hasn't knocked me on my tail feathers, as I figured it would. Come close, but I still have enough left to fight back. . .
And, a few weeks ago, Elaine pointed out something that I can, likewise, not dispute. And that is the fact that even though I am grappling with a life-threatening disease, I'm going to come out of it with my health eventually intact and a few unpleasant memories, but generally better off than a lot of other people we've been seeing in the last few weeks. And that's just not cancer patients at Moffitt, but people on the streets in Sarasota, even in our own neighborhood. These are the people that are NOT going to get better, or the best that they can expect is to live in in a degraded physical or mental state with a diminished quality of life. These are people who are permanently crippled in some way, perhaps, Or the saddest case is our neighbor Shel, who lives across the street from us. He's probably a little younger than me and had been the picture of health. About a year or so ago, we noticed he was acting erratically and that his wife was doing all the driving. Well, it turns out, he developed some sort of early onset dementia. He will never get better.
Now, I'm saying that I will not have any lasting effects. It's still too early to know that for certain, though it doesn't seem they will be major. I will eventually be able to eat real food again. My voice my never again sound the way it did in my 'prime' radio years, and who knows what else? All part of the grand adventure. . .
And, like I also said before, I will come out of this with some unpleasant memories. But those will be far outweighed by the lessons I've learned about myself, my family and friends, and, corny as it sounds. life in general. And, I can say something that I said ten years ago, and for the second time in my life, truly mean it. Once again, I will come out of a pretty vile situation as the best person I've ever been. (Injection of levity from an old bumper sticker - 'Oh, no! Not another learning experience!')
Time to rest up for tomorrow's adventures!
Peace and live to all!!!!!!
Joe
Sunday, May 11, 2014
The Last Sprint Plus a PSA for Kicks
Well, tomorrow, Monday, begins the final week of treatment and will be the third multi-media extravaganza - that is to say, both radiation and chemo. I'm definitely run-down by now, but can still make this final dash to the finish line.
In our society as it is, I'm probably pretty safe in saying that everyone reading this has been touched by cancer in some way. Now for many, that may be knowing someone or knowing of someone who has/had the disease. Mostly, we know of their plight second or third hand - our understanding that they are going through some bad stuff is generally in the abstract. Most are never in the position of living the disease day to day, and all that entails.
BTW, I am not saying this in any judgmental fashion, but merely stating what I believe to be fact. I truly hope that is the only way most of us are exposed. The first time I was affected was 10 years ago when my son David had his ordeal, when I was 53 years old, so I had gotten pretty far along in life free of intimate knowledge of the disease. And, of course, there's not a day that goes by that I still wish I was that naive 53-year old. But, that's a different story for a different day, There is no world of what should be, there is only what there is.
OK, you're asking, where is this drug and disease-addled crazy going with this one? That, my friends, is the Public Service Announcement I promised in the title. to re-iterate, I have been afflicted with squamous cell carcinoma of the tongue. That is to say, I developed a rather large malignant tumor at the base of my tongue. The cause of my brand of the disease is exposure to the HPV virus. In laymen's terms, I have contracted an extreme STD. The virus can remain dormant in our bodies for 10 - 12 years, or more. So, since a lot has happened on my life during that period, I have not expended any effort in trying to trace the genesis of the disease, not will I ever. The reality is it happened. Now, it typically doesn't happen to guys. In recent years, there have typically been fewer than 5,000 cases per year among American men. That also leads to why it took several months for me to be diagnosed - it's not what the doctors were looking for. They were looking for TMJ, or cluster headaches, or an abscess, or nerve damage, or . . .
But, getting back on point, recent statistics are that 5% of current cancers in Americans are a result of HPV. So, these forms of the disease are preventable, or at least may be mitigated by early detection. So, for yourselves and loved ones, no one knows your body like you do, When it's talking to you, listen. If something doesn't feel right, it probably isn't. You're not being a weenie by going to a doctor and being the squeaky wheel.
And here's where I'm going to ruffle some feathers, but so be it. I know that there are movements afoot now to eradicate all early childhood immunizations. I also know that there are movements to have young girls immunized against HPV. Now, I'm not going to pretend that I know anything at all about science and technology behind any of these. What I do know is that I not only recommend that we have our daughters immunized against HPV, but our sons, too. I know that I would never want to see any of my children or grandchildren, or any of your children and grandchildren, or any of the little boy who lives down the lane's children or grandchildren go though one day of what I'm going through. If I can somehow prevent a single case of cancer from occurring, I will eventually die a happy man.
Peace and love to all!!
Joe
In our society as it is, I'm probably pretty safe in saying that everyone reading this has been touched by cancer in some way. Now for many, that may be knowing someone or knowing of someone who has/had the disease. Mostly, we know of their plight second or third hand - our understanding that they are going through some bad stuff is generally in the abstract. Most are never in the position of living the disease day to day, and all that entails.
BTW, I am not saying this in any judgmental fashion, but merely stating what I believe to be fact. I truly hope that is the only way most of us are exposed. The first time I was affected was 10 years ago when my son David had his ordeal, when I was 53 years old, so I had gotten pretty far along in life free of intimate knowledge of the disease. And, of course, there's not a day that goes by that I still wish I was that naive 53-year old. But, that's a different story for a different day, There is no world of what should be, there is only what there is.
OK, you're asking, where is this drug and disease-addled crazy going with this one? That, my friends, is the Public Service Announcement I promised in the title. to re-iterate, I have been afflicted with squamous cell carcinoma of the tongue. That is to say, I developed a rather large malignant tumor at the base of my tongue. The cause of my brand of the disease is exposure to the HPV virus. In laymen's terms, I have contracted an extreme STD. The virus can remain dormant in our bodies for 10 - 12 years, or more. So, since a lot has happened on my life during that period, I have not expended any effort in trying to trace the genesis of the disease, not will I ever. The reality is it happened. Now, it typically doesn't happen to guys. In recent years, there have typically been fewer than 5,000 cases per year among American men. That also leads to why it took several months for me to be diagnosed - it's not what the doctors were looking for. They were looking for TMJ, or cluster headaches, or an abscess, or nerve damage, or . . .
But, getting back on point, recent statistics are that 5% of current cancers in Americans are a result of HPV. So, these forms of the disease are preventable, or at least may be mitigated by early detection. So, for yourselves and loved ones, no one knows your body like you do, When it's talking to you, listen. If something doesn't feel right, it probably isn't. You're not being a weenie by going to a doctor and being the squeaky wheel.
And here's where I'm going to ruffle some feathers, but so be it. I know that there are movements afoot now to eradicate all early childhood immunizations. I also know that there are movements to have young girls immunized against HPV. Now, I'm not going to pretend that I know anything at all about science and technology behind any of these. What I do know is that I not only recommend that we have our daughters immunized against HPV, but our sons, too. I know that I would never want to see any of my children or grandchildren, or any of your children and grandchildren, or any of the little boy who lives down the lane's children or grandchildren go though one day of what I'm going through. If I can somehow prevent a single case of cancer from occurring, I will eventually die a happy man.
Peace and love to all!!
Joe
Saturday, May 10, 2014
85.7% Complete
OK, Campers. Nothing says victory like the scent of radiation in the air. . . 30 treatments down, a mere 5 left. Monday will begin the final onslaught against the demon cancer. Week 7. The rest of the story. The whole enchilada. OK, you get the picture. . .
I am still knocking on wood as I say that I feel much better than I though I would by now. Oh, there is still time, I know. And there have been some slams into the wall. Perhaps not 'Don Giovanni's Descent into Hell', but at least 'Don Giovanni's Descent into Heck'. . .
And I want to thank everyone one more time for the cards, calls, texts, comments, emails, and any other form of encouragement. It means a lot to me, just knowing that the most fantastic support network a boy could ever want is out there whenever I need you. Friends and family, you are the best!!!!
In a way, the weekends between treatment weeks are kind of funny. I like the time away from Moffitt and the opportunity to rest, but there is also some anxiety and restlessness as it's a break in the treatments. Now, I know that the radiation and chemo is always working and will continue to do so after the last formal treatment is over, but there is just some sort of validation that something is happening on the days I receive treatment. As I said before on these pages, and will continue to do so, no doubt, I know I am not always rational right now. And I'll boldly say that I have earned that right to be irrational right now, what with one potentially fatal disease and two varieties of poisons that I have willingly accepted, coursing through my veins. . . ;-)
Well, I am going to continue to rest as the upcoming week will bring radiation every day, chemo on Tuesday, end fluid infusion/replenishment on Wednesday and Thursday. I AM pumped!!!!
Peace and love to all!!!
Joe
I am still knocking on wood as I say that I feel much better than I though I would by now. Oh, there is still time, I know. And there have been some slams into the wall. Perhaps not 'Don Giovanni's Descent into Hell', but at least 'Don Giovanni's Descent into Heck'. . .
And I want to thank everyone one more time for the cards, calls, texts, comments, emails, and any other form of encouragement. It means a lot to me, just knowing that the most fantastic support network a boy could ever want is out there whenever I need you. Friends and family, you are the best!!!!
In a way, the weekends between treatment weeks are kind of funny. I like the time away from Moffitt and the opportunity to rest, but there is also some anxiety and restlessness as it's a break in the treatments. Now, I know that the radiation and chemo is always working and will continue to do so after the last formal treatment is over, but there is just some sort of validation that something is happening on the days I receive treatment. As I said before on these pages, and will continue to do so, no doubt, I know I am not always rational right now. And I'll boldly say that I have earned that right to be irrational right now, what with one potentially fatal disease and two varieties of poisons that I have willingly accepted, coursing through my veins. . . ;-)
Well, I am going to continue to rest as the upcoming week will bring radiation every day, chemo on Tuesday, end fluid infusion/replenishment on Wednesday and Thursday. I AM pumped!!!!
Peace and love to all!!!
Joe
Wednesday, May 7, 2014
Roughing It In Paradise
OK, Campers. . . I have to take this opportunity to thank my wonderful wife Elaine for one of the many ways in which she humors me. . .
Since I began treatment, especially following chemo weeks, I will have spells in which the smells of food cooking makes me want to hurl. Since her appetite and health are in perfect order, it would be totally unreasonable to expect her to give up the foods that make me feel bad. (And I really never know when I will be affected or what food(s) will be the trigger.) So, for the most part, she has made the effort to clean the cooking pots as soon as she's done with them, pretty much meaning she is never eating anything hot. But, she has come up with a solution that enables her to cook whatever she wants and to eat it in peace by taking our camp stove out onto the lanai and cooking out there. If that's not true love, I don't know what is!!!!
Peace and love to all!!!!
Joe
Since I began treatment, especially following chemo weeks, I will have spells in which the smells of food cooking makes me want to hurl. Since her appetite and health are in perfect order, it would be totally unreasonable to expect her to give up the foods that make me feel bad. (And I really never know when I will be affected or what food(s) will be the trigger.) So, for the most part, she has made the effort to clean the cooking pots as soon as she's done with them, pretty much meaning she is never eating anything hot. But, she has come up with a solution that enables her to cook whatever she wants and to eat it in peace by taking our camp stove out onto the lanai and cooking out there. If that's not true love, I don't know what is!!!!
Peace and love to all!!!!
Joe
Tuesday, May 6, 2014
Sunday, May 4, 2014
On the Eve of Week 6
Well, tomorrow begins radiation treatment week 6 of 7. I'm tempted to say it's the homestretch, but I have been assured that the side effects of radiation linger for two weeks after the end of treatment, sort of a 'radiation hangover', I suppose.
And the treatment is beginning to take it's toll, as I do seem to be hitting a wall of sorts. Oh, nothing heinously terrible (yet) but a marked downturn. In the name of full disclosure, the rest of this paragraph is not for the squeamish. But, I have become a mucous generating machine. And, as excess anything is wont to do, it keeps fining new orifices to escape from. In the immortal words of Forrest Gump, 'That's all I have to say about that'.
I've pretty much hit the point where I can no longer eat any solid food and the Boost VHC that I'm living on is just about thin enough to trigger aspiration. So, I am still able to drink thickened liquids (thickened to nectar consistency) but have to take the Boost through the feeding tube. But, this shall pass, and not soon enough.
And I'm wearing out a lot quicker these days. But, the light is at the end of the tunnel.
Peace and love to all!!
Joe
And the treatment is beginning to take it's toll, as I do seem to be hitting a wall of sorts. Oh, nothing heinously terrible (yet) but a marked downturn. In the name of full disclosure, the rest of this paragraph is not for the squeamish. But, I have become a mucous generating machine. And, as excess anything is wont to do, it keeps fining new orifices to escape from. In the immortal words of Forrest Gump, 'That's all I have to say about that'.
I've pretty much hit the point where I can no longer eat any solid food and the Boost VHC that I'm living on is just about thin enough to trigger aspiration. So, I am still able to drink thickened liquids (thickened to nectar consistency) but have to take the Boost through the feeding tube. But, this shall pass, and not soon enough.
And I'm wearing out a lot quicker these days. But, the light is at the end of the tunnel.
Peace and love to all!!
Joe
Friday, May 2, 2014
71.4% There!!
OK, by the calendar, treatments are 5/7's of the way done. That would be 5 weeks done with two to go or 25 treatments down, 10 to go! In any case, it's the homestretch.
Of course, I'm being told that the first two weeks of recovery will be a carryover from the side effects of the treatment, but we'll burn that bridge when we come to it. .
The best thing about this Friday is that I'm home and not checked into the hospital. . .
But, I AM fading fast. . .
Peace and love for now!!!!
Joe
Of course, I'm being told that the first two weeks of recovery will be a carryover from the side effects of the treatment, but we'll burn that bridge when we come to it. .
The best thing about this Friday is that I'm home and not checked into the hospital. . .
But, I AM fading fast. . .
Peace and love for now!!!!
Joe
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