I'm on a 7-week schedule. Radiation every day. The radiation treatments last about 5 minutes. I've completed 3 treatments, so that leaves only 32 remaining. Chemo every Monday. The chemo treatments are 4 to 5 hours.
I'm on what's considered light doses of both radiation and chemo, so I may have a better than average chance of minimizing the negative effects of treatment. There is no guarantee. The only thing that's consistent in what I'm hearing is that different people react differently to the treatments.
The chemo is all through IV's and my veins aren't real good at holding IV's. I'm getting a very minor surgery to implant an IV in my chest. There was more discussion of the potential surgically implanted feeding tube. I told my oncologist I had a month supply of liquid food designed for use with a feeding tube and I was going to use that as long as I could swallow. He said that was an excellent idea and encouraged me to ask for more if I ran out.
I've already covered the side effects of the radiation, and nothing has changed with that. The common side effects of the chemo are pretty tame. Nausea, vomiting, and diarrhea lead the list of the nuisance effects. Hair loss isn't even a nuisance. One of my chemo drugs lists "sore mouth and gums" as a common side effect. The other chemo drug lists the same thing as an uncommon side effect. My radiation treatments guarantee the same thing at nasty levels. I suspect my mouth is going to get way past sore and painful.
The uncommon side effects of the chemo drugs go past nuisance and reach life-threatening (that's my interpretation and nothing the doctors have said). Changes in kidney, liver, and heart function are listed. That's not a biggie. I figured out long ago that if there's something that increases my chances of surviving the cancer and doesn't quite kill me - the doctors are giving that to me.
The scariest side effect - even though it's listed as uncommon. "Changes in fertility". I've managed to live 60 years without having any kids. The last thing I want right now is a change in my fertility.
Friday, May 29, 2009
Sunday, May 24, 2009
Recurrence Dangers
Recurrence is a biggie.
If recurrence happens in the left side of my neck:
1) I've already lost the jugular on the right. The one on the left is handling the load for the one that used to be on the right.
2) I've lost the thyroid and parathyroid on the right. The ones on the left can handle the load as long as they exist.
3) Vocal cords seem to have a major attraction for cancer. Mine are fine now. My hoarseness may be long-lasting and possibly permanent, but I still have good vocal cords. Recovery of vocal capability is still possible.
If recurrence happens in my lungs or a couple of areas in the throat that are hard to operate or radiate:
1) Bye - It's been good knowing you. I enjoyed the time we had together.
Neck cancers have decent survivability numbers (60% at 5 years). The fatal ones tend to be quick (6 months - 2 year survival). After the quick ones, recurrence is the major factor in 5-year mortality.
If recurrence happens in the left side of my neck:
1) I've already lost the jugular on the right. The one on the left is handling the load for the one that used to be on the right.
2) I've lost the thyroid and parathyroid on the right. The ones on the left can handle the load as long as they exist.
3) Vocal cords seem to have a major attraction for cancer. Mine are fine now. My hoarseness may be long-lasting and possibly permanent, but I still have good vocal cords. Recovery of vocal capability is still possible.
If recurrence happens in my lungs or a couple of areas in the throat that are hard to operate or radiate:
1) Bye - It's been good knowing you. I enjoyed the time we had together.
Neck cancers have decent survivability numbers (60% at 5 years). The fatal ones tend to be quick (6 months - 2 year survival). After the quick ones, recurrence is the major factor in 5-year mortality.
Saturday, May 23, 2009
Difficulties With Getting A Second Opinion
I appreciate the comments that unanimously urge me to get a second opinion. It's not just comments here, it's in emails and personal conversations. There are problems.
The first problem is that my surgeon (Wichita Clinic) has no experience with bypassing radiation in a case like mine. He's never seen that in his medical practice, which might be totally in this area. He has no financial interest and recommends the radiation.
My oncology group is affiliated with St. Francis. My radiation oncologist is affiliated with Wesley. That's a major chunk of all medical practice in Wichita. It's probably about all that work on my situation. I'm skeptical of finding anyone in Wichita who would disagree with the recommendations I've received. I doubt there are any local specialists who didn't either teach the doctors I'm dealing with, or were taught by the doctors I'm dealing with. The chances of a local and disagreeing second opinion are slim.
The second problem is timing. One thing that's never in question is that if there is radiation after surgery, the time interval between the surgery and the radiation is important to survival rates. I'm upset that I'm only getting the information about the permanence of some side effects at the eleventh hour, but it is the eleventh hour.
I'm likely to have to go out of town to get an opinion different than I'm getting. If the time to do that would delay the beginning of treatment, and treatment was recommended, all I accomplish is to reduce my survival numbers. If I get a second opinion and it disagrees with the local recommendation, then I have to decide which option I want to pursue.
I have arranged access to some medical research regarding my situation that goes way beyond what I can find on my own. It's from a source that is considered "gospel" in the medical community. It is more information than my surgeon had when he described what would happen. It is probably more current research than my radiation oncologist relies on. He has reminded me repeatedly of his 20-some years of experience.
I ran into someone I trust who has access to a huge medical research database that is a pretty pricey subscription. It's a research database that doctors normally consult for research and information from studies that affect their cases. If there is a basis for a second opinion that differs from what I've got, I'll know about it.
The company I work for has another division that owns that database.
The first problem is that my surgeon (Wichita Clinic) has no experience with bypassing radiation in a case like mine. He's never seen that in his medical practice, which might be totally in this area. He has no financial interest and recommends the radiation.
My oncology group is affiliated with St. Francis. My radiation oncologist is affiliated with Wesley. That's a major chunk of all medical practice in Wichita. It's probably about all that work on my situation. I'm skeptical of finding anyone in Wichita who would disagree with the recommendations I've received. I doubt there are any local specialists who didn't either teach the doctors I'm dealing with, or were taught by the doctors I'm dealing with. The chances of a local and disagreeing second opinion are slim.
The second problem is timing. One thing that's never in question is that if there is radiation after surgery, the time interval between the surgery and the radiation is important to survival rates. I'm upset that I'm only getting the information about the permanence of some side effects at the eleventh hour, but it is the eleventh hour.
I'm likely to have to go out of town to get an opinion different than I'm getting. If the time to do that would delay the beginning of treatment, and treatment was recommended, all I accomplish is to reduce my survival numbers. If I get a second opinion and it disagrees with the local recommendation, then I have to decide which option I want to pursue.
I have arranged access to some medical research regarding my situation that goes way beyond what I can find on my own. It's from a source that is considered "gospel" in the medical community. It is more information than my surgeon had when he described what would happen. It is probably more current research than my radiation oncologist relies on. He has reminded me repeatedly of his 20-some years of experience.
I ran into someone I trust who has access to a huge medical research database that is a pretty pricey subscription. It's a research database that doctors normally consult for research and information from studies that affect their cases. If there is a basis for a second opinion that differs from what I've got, I'll know about it.
The company I work for has another division that owns that database.
Friday, May 22, 2009
The Decision
I signed the consent forms for the radiation. The treatments start next Wednesday. I can still change my mind or chicken out. All I have to do is not show up for the appointment.
I told the radiation oncologist about my concerns. He told me I could quit any time I wanted, and if I quit now, "...you will die. I guarantee it. Your neck is contaminated. There is no reasonable expectation that everything was removed..." It went on longer, but he pretty much had me at, "You will die. I guarantee it".
I was reminded of a line from a Clint Eastwood movie, "Do you feel lucky"? I'm thinking maybe I've already used up a lot of "lucky".
According to this doctor, recurrence is different after surgery. There is a lot of stuff removed that previously was a barrier to the spread of the cancer. If it recurs in the operated area, it can spread to a lot of areas very quickly. That makes sense. It also makes sense that by the time any lump would be noticed, the spread could be disastrous. Besides that, he pretty much had me at "You will die. I guarantee it". He even had stories to tell of patients who died within a year after refusing radiation.
Without an identified cancer origin, they nuke every potential source and every possible location of suspected spread. That includes both sides of my neck, not just the right side. The radiation is targeted, but the target area is my neck and throat. That's a big target.
The danger of contracting a cancer from the treatments is real, but it's long-term. At the levels I will receive, it can be significant in 30 - 40 years. I've got medical consensus on that. The 30 - 40 year time frame is not significant in my situation (old fart).
They can save one saliva gland (out of six). Right now I have 5 saliva glands. I lost one in the surgery. It's real easy to notice the difference. The one I lost lubricated the right side of my throat during swallowing. Losing 5 will make eating and swallowing difficult. That's forever.
At least, if I can save one saliva gland (it's one of the big ones), I might be able to maintain the mouth chemistry that's produced my indestructible teeth. I've never had a cavity or dental problem in a permanent tooth.
This was (and still is) a nasty decision. One option has the possibility of death within a year. The other has permanent changes in the ability to enjoy a meal - and a bunch of other nasty stuff. I've decided not to risk my life at this point. That means I've decided to make some quality of life compromises.
I told the radiation oncologist about my concerns. He told me I could quit any time I wanted, and if I quit now, "...you will die. I guarantee it. Your neck is contaminated. There is no reasonable expectation that everything was removed..." It went on longer, but he pretty much had me at, "You will die. I guarantee it".
I was reminded of a line from a Clint Eastwood movie, "Do you feel lucky"? I'm thinking maybe I've already used up a lot of "lucky".
According to this doctor, recurrence is different after surgery. There is a lot of stuff removed that previously was a barrier to the spread of the cancer. If it recurs in the operated area, it can spread to a lot of areas very quickly. That makes sense. It also makes sense that by the time any lump would be noticed, the spread could be disastrous. Besides that, he pretty much had me at "You will die. I guarantee it". He even had stories to tell of patients who died within a year after refusing radiation.
Without an identified cancer origin, they nuke every potential source and every possible location of suspected spread. That includes both sides of my neck, not just the right side. The radiation is targeted, but the target area is my neck and throat. That's a big target.
The danger of contracting a cancer from the treatments is real, but it's long-term. At the levels I will receive, it can be significant in 30 - 40 years. I've got medical consensus on that. The 30 - 40 year time frame is not significant in my situation (old fart).
They can save one saliva gland (out of six). Right now I have 5 saliva glands. I lost one in the surgery. It's real easy to notice the difference. The one I lost lubricated the right side of my throat during swallowing. Losing 5 will make eating and swallowing difficult. That's forever.
At least, if I can save one saliva gland (it's one of the big ones), I might be able to maintain the mouth chemistry that's produced my indestructible teeth. I've never had a cavity or dental problem in a permanent tooth.
This was (and still is) a nasty decision. One option has the possibility of death within a year. The other has permanent changes in the ability to enjoy a meal - and a bunch of other nasty stuff. I've decided not to risk my life at this point. That means I've decided to make some quality of life compromises.
It's Time For Some Questions
The dental oncologist is the first medical person I've met that I don't trust. The meeting with him went poorly. It was all about how much money I'm going to spend with him, how he's going to charge me, and some really bad news about the rest of my life. Of course, the rest of my life will be much worse if I don't throw a bunch of money his way.
What I don't understand is that in all of my research and all of my medical consultations up to this point, why have I never run into all these lifelong problems? How did some major quality of life issues get ignored for over two months?
The type of radiation I'm getting is gamma ray. That's the most carcinogenic "stuff" known. It's what causes cancer in victims of radioactive fallout. I'm not supposed to worry about the cancer risk, because the beam of gamma rays is focused tightly on a specific area. There's virtually no danger of gamma ray exposure anywhere other than the target area. I still have to be monitored the rest of my life for cancer in the target area. The entire group of doctors keeps forgetting to mention that until I bring it up.
That should be enough background to cover the story from the dental oncologist.
My saliva glands will be killed by the radiation, resulting in difficulty tasting, chewing, and swallowing. The loss of saliva will remove my body's natural defenses against tooth decay. It appears I will have ongoing dental problems the rest of my life or until all my teeth rot out, whichever comes first. If any of my teeth decay and have to be removed during the course of the radiation treatments, it can be up to a year before my mouth is healed well enough to be fitted with any false teeth. Remember this bit about the sore mouth. It comes up later.
The muscle I use to close my mouth will be scarred by the radiation. That muscle has to stretch when I open my mouth. The scarring will make opening my mouth rather painful and can result in permanent inability to open or close my mouth. There is a device I can buy from the dentist and a series of painful exercises I can do with the device that will minimize the chances of that happening.
There was more, but by the time I heard that much, I had some questions. The first was about killing my saliva glands. The answer was that the radiation would kill them. Everything I heard was that the saliva loss was temporary. No, the saliva loss was permanent. One saliva gland is on my upper jaw, was that one going to get killed too? Yep, count it as gone.
There was no point in pursuing that line of questioning. I got told my saliva glands would die and this doctor confirmed it twice. Once with the question about permanent saliva loss and once with the death of my upper saliva gland.
Remember what I said earlier about that targeted beam that only hits the bad spots? There are 6 saliva glands 3 on each side of your face. They range from just behind your chin to just in front of the middle of your ear. Either that target area isn't really tiny, or I'm getting lied to about the permanent damage, or my target area is "everywhere" since there's no currently identified location that needs radiation.
The scarring of the muscle is another clue. I checked where there could be a target that would nail a muscle and even a single saliva gland. I found that. It's in the area where the tonsil used to be. That tonsil is gone. The radiation oncologist thinks that was the undocumented source of the cancer. The surgeon disagrees. There was not a trace of cancer found in that area that wasn't the easily identifiable lump.
If the target is the former tonsil, how did that become the target? Is it the radiation oncologists' hunch that determines the target?
My mouth is going to be so sore from the radiation that I'm forbidden to drink orange juice (because of the acidity) or eat corn chips (because of the possibility of poking and damaging a sore spot). The dentist wanted to schedule a deep cleaning of my teeth. That's one that goes into the gums. He gave me the schedule for that. I told him that was during the time I would be having my radiation treatments. He told me that was okay - it didn't cause any problems.
WAIT A MINUTE! My mouth is going to be so sore that eating a corn chip is forbidden, but digging into my gums with a metal cleaning tool is okie-dokie? One of those two has to be wrong!
The list of life-long problems from the dental oncologist includes: No alcohol or caffeine (dries the mouth too much), no fruit juice (the acid attacks the teeth), limit eating to foods with sauces or gravies, no spicy foods, no acidic foods, etc.
The literature for the device to exercise my jaw muscles mentions that some people who haven't used the device have lost the ability to communicate orally. Give me a stinking break. If that was a realistic expectation at even the lowest possible level of occurrence, that would be all over the medical literature, not just the sales literature.
I'm considering canceling the entire radiation therapy. There's no identified target for the radiation. The side effects are brutal. I've hit the point where I'm clearly getting bad information that seems more directed towards my purchasing medical procedures than towards my long-term quality of life and well-being.
I'm getting information on the prognosis of people who have not had followup radiation after the type of cancer and surgery I had. I've found several sources, including the Mayo Clinic, who do not use radiation in my situation.
My surgeon said that if I elect to skip radiation, and if the cancer returns, he could always go back in, cut it out, and then I'd be exactly where I am today. That sounds like a decent option.
What I don't understand is that in all of my research and all of my medical consultations up to this point, why have I never run into all these lifelong problems? How did some major quality of life issues get ignored for over two months?
The type of radiation I'm getting is gamma ray. That's the most carcinogenic "stuff" known. It's what causes cancer in victims of radioactive fallout. I'm not supposed to worry about the cancer risk, because the beam of gamma rays is focused tightly on a specific area. There's virtually no danger of gamma ray exposure anywhere other than the target area. I still have to be monitored the rest of my life for cancer in the target area. The entire group of doctors keeps forgetting to mention that until I bring it up.
That should be enough background to cover the story from the dental oncologist.
My saliva glands will be killed by the radiation, resulting in difficulty tasting, chewing, and swallowing. The loss of saliva will remove my body's natural defenses against tooth decay. It appears I will have ongoing dental problems the rest of my life or until all my teeth rot out, whichever comes first. If any of my teeth decay and have to be removed during the course of the radiation treatments, it can be up to a year before my mouth is healed well enough to be fitted with any false teeth. Remember this bit about the sore mouth. It comes up later.
The muscle I use to close my mouth will be scarred by the radiation. That muscle has to stretch when I open my mouth. The scarring will make opening my mouth rather painful and can result in permanent inability to open or close my mouth. There is a device I can buy from the dentist and a series of painful exercises I can do with the device that will minimize the chances of that happening.
There was more, but by the time I heard that much, I had some questions. The first was about killing my saliva glands. The answer was that the radiation would kill them. Everything I heard was that the saliva loss was temporary. No, the saliva loss was permanent. One saliva gland is on my upper jaw, was that one going to get killed too? Yep, count it as gone.
There was no point in pursuing that line of questioning. I got told my saliva glands would die and this doctor confirmed it twice. Once with the question about permanent saliva loss and once with the death of my upper saliva gland.
Remember what I said earlier about that targeted beam that only hits the bad spots? There are 6 saliva glands 3 on each side of your face. They range from just behind your chin to just in front of the middle of your ear. Either that target area isn't really tiny, or I'm getting lied to about the permanent damage, or my target area is "everywhere" since there's no currently identified location that needs radiation.
The scarring of the muscle is another clue. I checked where there could be a target that would nail a muscle and even a single saliva gland. I found that. It's in the area where the tonsil used to be. That tonsil is gone. The radiation oncologist thinks that was the undocumented source of the cancer. The surgeon disagrees. There was not a trace of cancer found in that area that wasn't the easily identifiable lump.
If the target is the former tonsil, how did that become the target? Is it the radiation oncologists' hunch that determines the target?
My mouth is going to be so sore from the radiation that I'm forbidden to drink orange juice (because of the acidity) or eat corn chips (because of the possibility of poking and damaging a sore spot). The dentist wanted to schedule a deep cleaning of my teeth. That's one that goes into the gums. He gave me the schedule for that. I told him that was during the time I would be having my radiation treatments. He told me that was okay - it didn't cause any problems.
WAIT A MINUTE! My mouth is going to be so sore that eating a corn chip is forbidden, but digging into my gums with a metal cleaning tool is okie-dokie? One of those two has to be wrong!
The list of life-long problems from the dental oncologist includes: No alcohol or caffeine (dries the mouth too much), no fruit juice (the acid attacks the teeth), limit eating to foods with sauces or gravies, no spicy foods, no acidic foods, etc.
The literature for the device to exercise my jaw muscles mentions that some people who haven't used the device have lost the ability to communicate orally. Give me a stinking break. If that was a realistic expectation at even the lowest possible level of occurrence, that would be all over the medical literature, not just the sales literature.
I'm considering canceling the entire radiation therapy. There's no identified target for the radiation. The side effects are brutal. I've hit the point where I'm clearly getting bad information that seems more directed towards my purchasing medical procedures than towards my long-term quality of life and well-being.
I'm getting information on the prognosis of people who have not had followup radiation after the type of cancer and surgery I had. I've found several sources, including the Mayo Clinic, who do not use radiation in my situation.
My surgeon said that if I elect to skip radiation, and if the cancer returns, he could always go back in, cut it out, and then I'd be exactly where I am today. That sounds like a decent option.
Wednesday, May 20, 2009
More Research
I knew that I lost my internal jugular vein. I figured there was a jugular vein and the internal jugular vein was probably a small branch. That's wrong. There's an internal jugular vein and an external jugular vein. The external jugular vein is the little branch. The internal jugular vein is what is commonly referred to as the jugular vein.
Man! I didn't think it was possible to remove a jugular vein, but my right one is gone.
Man! I didn't think it was possible to remove a jugular vein, but my right one is gone.
Tuesday, May 19, 2009
The List of Side Effects and Doctors Keeps Growing
I met with the radiation oncologist again today. He's happy with where everything is at and ready to move on with my treatments. There's still some planning visits before treatments start, and I have another new doctor. This one is a dentist who specializes in tooth decay caused by radiation treatments.
I think this is about what the doctor said today, "Oncologists used to do extractions of teeth that rotted from radiation treatments, but we don't do that any more and prefer having a dentist involved". I hadn't heard of losing teeth as a side effect of the radiation treatments, but my doc rattled that off like he had said it hundreds of times.
The list of radiation effects I'm aware of (so far) is:
1) Loss of immune system (temporary)
2) No sensation of taste (temporary with potential long-term changes in taste)
3) No saliva (temporary)
4) Potential tooth loss (permanent)
5) Sore throat from hell (temporary)
6) Difficulty swallowing (duh!)
7) Need of a feeding tube (temporary)
8) Significant weight loss (gee, you're kidding, right?)
9) Loss of hair growth on one side of my throat and part of one cheek (permanent)
Here's something else I've learned. A tonsillectomy doesn't mean you don't have tonsils. There was a lot of tonsil tissue taken from my neck. The doctor I saw today is convinced that my cancer originated in my right tonsil. That's his interpretation from the pathology reports from the stuff removed in my big surgery.
If that's true, here's my entire medical history:
1) Tonsillectomy
2) Pneumonia
3) Wisdom tooth extraction
4) Cancer originating in a tonsil
That's half of my entire medical history that involves tonsils. The danged things will grow back. Tonsils contain the type of cells identified with my cancer. All the tonsil tissue removed was dead and contained no active malignancies. This doc thinks the cancer started in the tonsil and killed the tonsil. When it killed the outer layer, it broke free in my neck and went nuts. That left a dead tonsil that couldn't even support the life of the cancer.
A tonsil isn't critical to life, and a non-working tonsil has no symptoms. The cancer had a nice little home until it killed its home. Tests for cancer in the tonsil tissue that was removed showed no cancer. This doc's theory is that the origin of the cancer was killed to the point it could no longer support even a cancerous growth, so there was no way to positively identify cancer there.
Doctor's appointments are stacking up now. I'm up to sometimes seeing multiple doctors in the same day. This is to get everybody informed as I go into the next phase of treatment.
This better be the end of it. That's one nasty list of side effects. My surgeon is convinced he got the source and all of the cancer. My oncologist is convinced there's no point in looking further for an origin, as it will never be found. My oncologist radiologist is convinced the source has been removed. The radiation treatments are a contingency in case all those guys are wrong.
That's a lot of exposure to bad things just in case 3 doctors are wrong. but they all think it's worth the risk. It's not their necks on the line here. In a way it is, but not physically. It's my neck on the line and I'm going with the contingency plan. It's brutal, but taking any easy way out here that left any risk would result in even more brutal approaches if that risk turned into something that needed to be dealt with later.
If I have to go through something like this, I'd rather do it once and do it right. I'd rather do it now instead of later. I'm already having problems healing and it's guaranteed I will be older at any time that is "later".
I think this is about what the doctor said today, "Oncologists used to do extractions of teeth that rotted from radiation treatments, but we don't do that any more and prefer having a dentist involved". I hadn't heard of losing teeth as a side effect of the radiation treatments, but my doc rattled that off like he had said it hundreds of times.
The list of radiation effects I'm aware of (so far) is:
1) Loss of immune system (temporary)
2) No sensation of taste (temporary with potential long-term changes in taste)
3) No saliva (temporary)
4) Potential tooth loss (permanent)
5) Sore throat from hell (temporary)
6) Difficulty swallowing (duh!)
7) Need of a feeding tube (temporary)
8) Significant weight loss (gee, you're kidding, right?)
9) Loss of hair growth on one side of my throat and part of one cheek (permanent)
Here's something else I've learned. A tonsillectomy doesn't mean you don't have tonsils. There was a lot of tonsil tissue taken from my neck. The doctor I saw today is convinced that my cancer originated in my right tonsil. That's his interpretation from the pathology reports from the stuff removed in my big surgery.
If that's true, here's my entire medical history:
1) Tonsillectomy
2) Pneumonia
3) Wisdom tooth extraction
4) Cancer originating in a tonsil
That's half of my entire medical history that involves tonsils. The danged things will grow back. Tonsils contain the type of cells identified with my cancer. All the tonsil tissue removed was dead and contained no active malignancies. This doc thinks the cancer started in the tonsil and killed the tonsil. When it killed the outer layer, it broke free in my neck and went nuts. That left a dead tonsil that couldn't even support the life of the cancer.
A tonsil isn't critical to life, and a non-working tonsil has no symptoms. The cancer had a nice little home until it killed its home. Tests for cancer in the tonsil tissue that was removed showed no cancer. This doc's theory is that the origin of the cancer was killed to the point it could no longer support even a cancerous growth, so there was no way to positively identify cancer there.
Doctor's appointments are stacking up now. I'm up to sometimes seeing multiple doctors in the same day. This is to get everybody informed as I go into the next phase of treatment.
This better be the end of it. That's one nasty list of side effects. My surgeon is convinced he got the source and all of the cancer. My oncologist is convinced there's no point in looking further for an origin, as it will never be found. My oncologist radiologist is convinced the source has been removed. The radiation treatments are a contingency in case all those guys are wrong.
That's a lot of exposure to bad things just in case 3 doctors are wrong. but they all think it's worth the risk. It's not their necks on the line here. In a way it is, but not physically. It's my neck on the line and I'm going with the contingency plan. It's brutal, but taking any easy way out here that left any risk would result in even more brutal approaches if that risk turned into something that needed to be dealt with later.
If I have to go through something like this, I'd rather do it once and do it right. I'd rather do it now instead of later. I'm already having problems healing and it's guaranteed I will be older at any time that is "later".
Thursday, May 14, 2009
Surgery #3 Cancelled
I am so glad I checked on the meaning of "fistula".
I thought that meant they were going to close an opening in my incision. Yeah, let's do that. I'm ready for that. If I hadn't checked out what they were going to do, I would have signed the consent form.
If I signed the consent form, they were going to open up my neck and look for the hole in my throat. When they couldn't find it, I don't know what they would have done.
I told them there wasn't a hole in my throat any more and I wouldn't sign the consent form until I talked to the doctor. I told the doctor that if he had any reason to think I still had a hole in my throat that we should do the surgery.
The doc gave me a dye test and waited close to an hour to see if any dye from inside my throat got into the area of my incision. The test came out clean. The fistula is healed. No surgery today.
The incision is getting better. Part of what appeared to be healing was "something" that isn't healing, impedes healing, and isn't viable. That "stuff" died. That's normal, but it went from looking like healed tissue to being dead stuff. The doc scraped all the dead stuff out, which created an opening to an infected area that is now slowly draining. The infection seems to be under control, but the dead stuff and the infection created a rather disturbing visual on my neck.
Now it's time to start with the radiation treatments. I've been told to call my Radiation Oncologist and get the treatments started as soon as possible.
The variation of the type of cancer I have doesn't fit into medical knowledge and practice very well. The good news is that survivability is about 100% if what they've found so far holds up to be true. The bad news is that they really don't know how to combat it, so they hit it with everything they know of.
In my situation, they're hitting it with some stuff that's supposed to take care of the "about" part of "survivability is about 100%". The medical effort is totally geared toward survival and doesn't really consider quality of life issues of the survivor.
In my situation, I consider the ability to speak to be a major quality of life issue and a major career issue. I have to sign a "permanent damage to vocal cords" waiver for anasthetic, so if I have permanent loss of vocal ability, I've agreed to it.
I'd like to know what the chances of permanent loss of vocal ability are compared to the increased chances of survival (or something) from the surgery or treatments. I'm not getting that information.
I thought that meant they were going to close an opening in my incision. Yeah, let's do that. I'm ready for that. If I hadn't checked out what they were going to do, I would have signed the consent form.
If I signed the consent form, they were going to open up my neck and look for the hole in my throat. When they couldn't find it, I don't know what they would have done.
I told them there wasn't a hole in my throat any more and I wouldn't sign the consent form until I talked to the doctor. I told the doctor that if he had any reason to think I still had a hole in my throat that we should do the surgery.
The doc gave me a dye test and waited close to an hour to see if any dye from inside my throat got into the area of my incision. The test came out clean. The fistula is healed. No surgery today.
The incision is getting better. Part of what appeared to be healing was "something" that isn't healing, impedes healing, and isn't viable. That "stuff" died. That's normal, but it went from looking like healed tissue to being dead stuff. The doc scraped all the dead stuff out, which created an opening to an infected area that is now slowly draining. The infection seems to be under control, but the dead stuff and the infection created a rather disturbing visual on my neck.
Now it's time to start with the radiation treatments. I've been told to call my Radiation Oncologist and get the treatments started as soon as possible.
The variation of the type of cancer I have doesn't fit into medical knowledge and practice very well. The good news is that survivability is about 100% if what they've found so far holds up to be true. The bad news is that they really don't know how to combat it, so they hit it with everything they know of.
In my situation, they're hitting it with some stuff that's supposed to take care of the "about" part of "survivability is about 100%". The medical effort is totally geared toward survival and doesn't really consider quality of life issues of the survivor.
In my situation, I consider the ability to speak to be a major quality of life issue and a major career issue. I have to sign a "permanent damage to vocal cords" waiver for anasthetic, so if I have permanent loss of vocal ability, I've agreed to it.
I'd like to know what the chances of permanent loss of vocal ability are compared to the increased chances of survival (or something) from the surgery or treatments. I'm not getting that information.
Wednesday, May 13, 2009
And On to Surgery #3
Thursday, May 14, with a noon check-in time. When they called today, they wanted me to confirm that I was scheduled in to "close a fistula". I should have looked the word up before I agreed to it. A fistula is an opening between two areas that aren't normally connected.
That was 3 weeks ago! 4 or 5 weeks ago my oncologist refused to continue until my surgeon saw me again. The oncologist said he would get in touch with my surgeon and they'd work out an appointment. That did not happen. Instead I ended up with an appointment with the doctor who's going to give me the radiation. He refused to schedule anything, called my surgeon during my appointment, and my surgeon saw me the same afternoon. His scheduler couldn't get me set up for surfery for about 2 weeks.
It was me and not the doctors who found and reported the fistula (or fistulae - I suspect there were two). I was expecting surgery to correct the first one. I measured the progress of that one with how many teaspoons of food ended up in my bandages after I ate a meal.
The latest one was just from drinking water. The leakage was from a higher spot in my throat and it leaked out of a different area of the incisions. That one cleared up 2 or 3 weeks ago, but since I reported it to an oncologist, who called the surgeon, now the surgeon wants to go fix something that isn't broken any more.
The part that's broken now is the incision. The last week or so has been a race between the incision pulling apart and the incision healing. For a couple of days it was pulling apart faster than it was healing. I'm wearing a pretty good-sized bandage when I go out of the house. It's not to protect my neck as much as it is to protect other people's eyes.
I've still got a lot of swelling in my neck. I think the swelling is getting bigger and pulling on the skin. Then the skin gives way at the incision. The swelling is the source of my hoarseness, which is getting worse instead of better.
That was 3 weeks ago! 4 or 5 weeks ago my oncologist refused to continue until my surgeon saw me again. The oncologist said he would get in touch with my surgeon and they'd work out an appointment. That did not happen. Instead I ended up with an appointment with the doctor who's going to give me the radiation. He refused to schedule anything, called my surgeon during my appointment, and my surgeon saw me the same afternoon. His scheduler couldn't get me set up for surfery for about 2 weeks.
It was me and not the doctors who found and reported the fistula (or fistulae - I suspect there were two). I was expecting surgery to correct the first one. I measured the progress of that one with how many teaspoons of food ended up in my bandages after I ate a meal.
The latest one was just from drinking water. The leakage was from a higher spot in my throat and it leaked out of a different area of the incisions. That one cleared up 2 or 3 weeks ago, but since I reported it to an oncologist, who called the surgeon, now the surgeon wants to go fix something that isn't broken any more.
The part that's broken now is the incision. The last week or so has been a race between the incision pulling apart and the incision healing. For a couple of days it was pulling apart faster than it was healing. I'm wearing a pretty good-sized bandage when I go out of the house. It's not to protect my neck as much as it is to protect other people's eyes.
I've still got a lot of swelling in my neck. I think the swelling is getting bigger and pulling on the skin. Then the skin gives way at the incision. The swelling is the source of my hoarseness, which is getting worse instead of better.
Saturday, May 09, 2009
Pathology, Observations, and Some Research (cont.)
This is a continuation of the previous entry. If you haven't read that one, you might want to before continuing with this entry. I think I pretty much covered what was found during the surgery, so this post will try to go into what all that means.
Recovery from the surgery is a mystery. Today was the first day I didn't have anything leaking from the incision. That's 53 days or about 7 and a half weeks since the surgery. My surgeon is surprised that my voice is still nothing but a hoarse whisper. He thought it should have improved by now.
The only thing any of the doctors seem to know is that they're not going any further until I'm healed better. I have an appointment with the surgeon May 14 to check the healing again. There may or may not be corrective surgery to aid healing at that time.
The surgery done for my problem hasn't really changed in over 100 years. Step 1 of curing my problem relies on a medical procedure straight out of 1903.
It's time to take another look at risk factors. The original diagnosis was a cancer that had spread from another location. That other location had to be a source of squamous cells. The most likely origin location for a smoker is somewhere along the passage the smoke takes: Nose, sinuses, throat, tonsils, larynx, lungs - that stuff. In those situations, it's almost guaranteed to be related to smoking.
I came out 100% negative in all those areas. That pretty much eliminates smoking as a cause of what I've got. I'm still at risk from smoking. The fact that I've had squamous cell carcinoma increases the possibility I will get it again. I need to avoid risk factors in the future.
I do have a small skin cancer on my left ear. It's about the size of the head of a pin. It has not been biopsied, but a visual examination indicates it's probably basal cell, not squamous cell. I've pointed it out to the doctors and they have ignored it.
The lack of any cancerous squamous cells anywhere in my lymph system indicates my lymph system didn't transport those cancerous squamous cells from another location. The absence of any cancer in any area where squamous cells exist indicates there is no source for the cancerous cells found in my neck.
If the source of those cancerous squamous cells in my neck isn't from cancerous cells from another location, how did I get cancer in my neck in cells that don't exist in my neck? Forget smoking as a cause. I never smoked through my neck. Smoking can't be totally eliminated. It's possible the carcinogens in cigarette smoke soaked through my throat and caused mutations in the - wait this isn't working. There are no cells of the proper type even with the osmosis theory. It's time to look at other risk factors.
My situation is identified in 6%-7% of squamous cell neck cancers. All the medical literature (everything the docs learn in med school) says it has to come from another source location. When that location can't be found, they've invented a category of cancer that doesn't actually exist, but spreads to other locations. Uh, yeah, that's what they're telling me I've got. It's a cancer that doesn't really exist, but still manages to reproduce and spread itself.
This "voodoo" cancer, that doesn't really exist, but has spread and is reproducing, really freaks the docs out. It causes them to resort to extremely aggressive tactics to kill the thing that they can't find. The medical technology is straight out of '03 - that's 1903 - not 2003. The medical reaction is straight out of 1950's horror movies. They don't know what it is, so they grab everything they've got and attack.
I've got another theory. It explains how cells that can't exist in a location are found there and become malignant. It's based on virus activity. Viruses can "borrow" genetic information from their surroundings. They can move around, maintain that genetic information, and produce cell types associated with their historic locations.
Moving up on the list (it's mentioned often in the medical literature) is human papilloma virus. Yes, the virus that's well-known for causing several female cancers.
I'm starting to think that a virus that normally resides in an area that is loaded up with squamous cells can pick up genetic material from those cells. If that virus can then find it's way to another part of the body or to another person, it can take the genetic material from its original location with it. That can lead to genetic material for cells to exist in areas where they don't normally exist. If the virus that transported the genetic information is known for causing cancer, it could cause unusual cancers in unusual locations.
Human papilloma virus is identified as a risk factor for squamous cell carcinoma. I think my explanation, which has no medical backing, makes more sense than the "official" medical explanation, which is that I have an unknown cancer that doesn't really exist, but has spread into my neck.
Recovery from the surgery is a mystery. Today was the first day I didn't have anything leaking from the incision. That's 53 days or about 7 and a half weeks since the surgery. My surgeon is surprised that my voice is still nothing but a hoarse whisper. He thought it should have improved by now.
The only thing any of the doctors seem to know is that they're not going any further until I'm healed better. I have an appointment with the surgeon May 14 to check the healing again. There may or may not be corrective surgery to aid healing at that time.
The surgery done for my problem hasn't really changed in over 100 years. Step 1 of curing my problem relies on a medical procedure straight out of 1903.
It's time to take another look at risk factors. The original diagnosis was a cancer that had spread from another location. That other location had to be a source of squamous cells. The most likely origin location for a smoker is somewhere along the passage the smoke takes: Nose, sinuses, throat, tonsils, larynx, lungs - that stuff. In those situations, it's almost guaranteed to be related to smoking.
I came out 100% negative in all those areas. That pretty much eliminates smoking as a cause of what I've got. I'm still at risk from smoking. The fact that I've had squamous cell carcinoma increases the possibility I will get it again. I need to avoid risk factors in the future.
I do have a small skin cancer on my left ear. It's about the size of the head of a pin. It has not been biopsied, but a visual examination indicates it's probably basal cell, not squamous cell. I've pointed it out to the doctors and they have ignored it.
The lack of any cancerous squamous cells anywhere in my lymph system indicates my lymph system didn't transport those cancerous squamous cells from another location. The absence of any cancer in any area where squamous cells exist indicates there is no source for the cancerous cells found in my neck.
If the source of those cancerous squamous cells in my neck isn't from cancerous cells from another location, how did I get cancer in my neck in cells that don't exist in my neck? Forget smoking as a cause. I never smoked through my neck. Smoking can't be totally eliminated. It's possible the carcinogens in cigarette smoke soaked through my throat and caused mutations in the - wait this isn't working. There are no cells of the proper type even with the osmosis theory. It's time to look at other risk factors.
My situation is identified in 6%-7% of squamous cell neck cancers. All the medical literature (everything the docs learn in med school) says it has to come from another source location. When that location can't be found, they've invented a category of cancer that doesn't actually exist, but spreads to other locations. Uh, yeah, that's what they're telling me I've got. It's a cancer that doesn't really exist, but still manages to reproduce and spread itself.
This "voodoo" cancer, that doesn't really exist, but has spread and is reproducing, really freaks the docs out. It causes them to resort to extremely aggressive tactics to kill the thing that they can't find. The medical technology is straight out of '03 - that's 1903 - not 2003. The medical reaction is straight out of 1950's horror movies. They don't know what it is, so they grab everything they've got and attack.
I've got another theory. It explains how cells that can't exist in a location are found there and become malignant. It's based on virus activity. Viruses can "borrow" genetic information from their surroundings. They can move around, maintain that genetic information, and produce cell types associated with their historic locations.
Moving up on the list (it's mentioned often in the medical literature) is human papilloma virus. Yes, the virus that's well-known for causing several female cancers.
I'm starting to think that a virus that normally resides in an area that is loaded up with squamous cells can pick up genetic material from those cells. If that virus can then find it's way to another part of the body or to another person, it can take the genetic material from its original location with it. That can lead to genetic material for cells to exist in areas where they don't normally exist. If the virus that transported the genetic information is known for causing cancer, it could cause unusual cancers in unusual locations.
Human papilloma virus is identified as a risk factor for squamous cell carcinoma. I think my explanation, which has no medical backing, makes more sense than the "official" medical explanation, which is that I have an unknown cancer that doesn't really exist, but has spread into my neck.
Wednesday, May 06, 2009
Pathology, Observations, and Some Research
I have squamous cell carcinoma. It's a huge category and a very general classification. It can occur anywhere on the exterior of a body and a few places internally. Chances are you either know someone (other than me) with this diagnosis or someone you know will eventually have this diagnosis.
I need to lay a bit of groundwork so you can understand some things I've learned. If you get tired of reading the techy stuff that is the background, come back later and look for my next post. I will warn you that some parts of this post are - let's say they may be more descriptive than you may care to read.
Squamous cell carcinoma occurs in squamous cells. Squamous cells exist in skin and every other body part that has exposure to the environment. In skin they are a layer just beneath the surface of the skin. This may not be medically accurate, but if you cut yourself and bleed, you're pretty much at the depth where squamous cells are located. Basal cells are located just underneath squamous cells. Basal cells are the origin of skin cancer that is associated with sun exposure and generally considered not real dangerous. Squamous cell carcinoma is most commonly another variation of skin cancer. Squamous cell carcinoma in the skin is associated with exposure to the sun, and specifically to ultraviolet exposure.
Squamous cells play an important role in keeping stuff from the outside world outside of your body. They exist in areas with exposure to the environment, such as sinuses, throat, tonsils, lungs, etc. To put this delicately, any place that something goes in or out of your body, there is an area of exposure to the environment and there are squamous cells. Any area that is considered a mucous membrane has squamous cells.
I had a lump the size of an egg in my neck. It was made up of malignant squamous cells. In the location where I had the squamous cell carcinoma, there are no naturally occurring squamous cells. So, where did the squamous cells come from and how did they become malignant? That was the question facing my doctors.
The first thought was that my lymph system had found a cancer where there were squamous cells, had latched onto some sloughed off cancer cells, and transported them to my neck where they grew. That's very bad. That would mean there was a source cancer somewhere that had spread through my lymph system, and was probably depositing cancerous cells everywhere in my body. The lymph system exists in every part of the body. Cancer that has spread into the lymph system is capable of creating tumors anywhere and everywhere in the body.
There's one more factor that needs to be known before I go into what happened during my surgery and why it had to happen that way. Squamous cell carcinoma is either fairly harmless or incredibly evil, depending on where it's located. If you get it on your ear, they will just remove the tumor and that's pretty much the end of it. When it gets to a secondary location (my diagnosis), it is incredibly aggressive and invasive. It kills about anything it touches.
When removing a malignant tumor, the rule is to remove the tumor and enough healthy tissue around the tumor to be sure that all the malignancy is removed. That rule, the invasiveness of the tumor, and the aggressive approach to controlling an apparently spreading cancer led to my losing a lot of stuff. No malignancy was found in anything other than the obvious tumor.
I lost 1 saliva gland, 23 lymph nodes, the entire lymph duct system on the right side of my neck, the right internal jugular vein, parts of a skeletal muscle, the nerve that controls my right trapezius muscle, a thyroid gland, a parathyroid gland, and a tonsil.
The saliva gland was alive and well, but being invaded and had to be removed to ensure getting everything. That's permanent and affects chewing and swallowing.
The lymph nodes are automatic with squamous cell in the neck. None were malignant or had any cancerous cells. That indicates the lymph system is not spreading the cancer. It also indicates the lymph system probably didn't spread the cancer. That's a crucial point. I'll either get to it later in this post or in a future post.
The loss of the lymph ducts and the internal jugular vein are the source of my swollen neck and hoarse voice. I've got all my arteries intact. Arteries bring blood into an area. Blood moves into capillaries and sort of oozes out so it's available to the tissues. Other capillaries attached to veins grab onto the blood components and return them to the blood system. White blood cells, blood plasma, T-cells, and some other blood components are released by capillary action, but don't rejoin the blood components returned by the veins. Those blood components not returned form the basis of the lymph system.
The internal jugular vein is the route for blood components to leave the neck. I don't have that any more. Blood components have to randomly move around until they run into a capillary system attached to a vein that works. That leaves a lot of blood components stuck in my neck. Lymph components have no way out. The duct that used to transport them is gone. That leads to a buildup of fluids in my neck that presses on my larynx and produces unsightly swelling. This is temporary. Eventually my body will rebuild ways of dealing with this.
It's getting late and this post is getting long. It's time for me to fess up to what I've lost and what I can expect to recover. And why I had to lose what I lost.
Along with what I lost, the results of testing on the stuff that's gone changed the diagnosis and prognosis completely. I've ended up with a cancer that can't exist, but I had it. I haven't even started with what it killed. It killed pretty much everything it touched.
I need to lay a bit of groundwork so you can understand some things I've learned. If you get tired of reading the techy stuff that is the background, come back later and look for my next post. I will warn you that some parts of this post are - let's say they may be more descriptive than you may care to read.
Squamous cell carcinoma occurs in squamous cells. Squamous cells exist in skin and every other body part that has exposure to the environment. In skin they are a layer just beneath the surface of the skin. This may not be medically accurate, but if you cut yourself and bleed, you're pretty much at the depth where squamous cells are located. Basal cells are located just underneath squamous cells. Basal cells are the origin of skin cancer that is associated with sun exposure and generally considered not real dangerous. Squamous cell carcinoma is most commonly another variation of skin cancer. Squamous cell carcinoma in the skin is associated with exposure to the sun, and specifically to ultraviolet exposure.
Squamous cells play an important role in keeping stuff from the outside world outside of your body. They exist in areas with exposure to the environment, such as sinuses, throat, tonsils, lungs, etc. To put this delicately, any place that something goes in or out of your body, there is an area of exposure to the environment and there are squamous cells. Any area that is considered a mucous membrane has squamous cells.
I had a lump the size of an egg in my neck. It was made up of malignant squamous cells. In the location where I had the squamous cell carcinoma, there are no naturally occurring squamous cells. So, where did the squamous cells come from and how did they become malignant? That was the question facing my doctors.
The first thought was that my lymph system had found a cancer where there were squamous cells, had latched onto some sloughed off cancer cells, and transported them to my neck where they grew. That's very bad. That would mean there was a source cancer somewhere that had spread through my lymph system, and was probably depositing cancerous cells everywhere in my body. The lymph system exists in every part of the body. Cancer that has spread into the lymph system is capable of creating tumors anywhere and everywhere in the body.
There's one more factor that needs to be known before I go into what happened during my surgery and why it had to happen that way. Squamous cell carcinoma is either fairly harmless or incredibly evil, depending on where it's located. If you get it on your ear, they will just remove the tumor and that's pretty much the end of it. When it gets to a secondary location (my diagnosis), it is incredibly aggressive and invasive. It kills about anything it touches.
When removing a malignant tumor, the rule is to remove the tumor and enough healthy tissue around the tumor to be sure that all the malignancy is removed. That rule, the invasiveness of the tumor, and the aggressive approach to controlling an apparently spreading cancer led to my losing a lot of stuff. No malignancy was found in anything other than the obvious tumor.
I lost 1 saliva gland, 23 lymph nodes, the entire lymph duct system on the right side of my neck, the right internal jugular vein, parts of a skeletal muscle, the nerve that controls my right trapezius muscle, a thyroid gland, a parathyroid gland, and a tonsil.
The saliva gland was alive and well, but being invaded and had to be removed to ensure getting everything. That's permanent and affects chewing and swallowing.
The lymph nodes are automatic with squamous cell in the neck. None were malignant or had any cancerous cells. That indicates the lymph system is not spreading the cancer. It also indicates the lymph system probably didn't spread the cancer. That's a crucial point. I'll either get to it later in this post or in a future post.
The loss of the lymph ducts and the internal jugular vein are the source of my swollen neck and hoarse voice. I've got all my arteries intact. Arteries bring blood into an area. Blood moves into capillaries and sort of oozes out so it's available to the tissues. Other capillaries attached to veins grab onto the blood components and return them to the blood system. White blood cells, blood plasma, T-cells, and some other blood components are released by capillary action, but don't rejoin the blood components returned by the veins. Those blood components not returned form the basis of the lymph system.
The internal jugular vein is the route for blood components to leave the neck. I don't have that any more. Blood components have to randomly move around until they run into a capillary system attached to a vein that works. That leaves a lot of blood components stuck in my neck. Lymph components have no way out. The duct that used to transport them is gone. That leads to a buildup of fluids in my neck that presses on my larynx and produces unsightly swelling. This is temporary. Eventually my body will rebuild ways of dealing with this.
It's getting late and this post is getting long. It's time for me to fess up to what I've lost and what I can expect to recover. And why I had to lose what I lost.
Along with what I lost, the results of testing on the stuff that's gone changed the diagnosis and prognosis completely. I've ended up with a cancer that can't exist, but I had it. I haven't even started with what it killed. It killed pretty much everything it touched.
Friday, May 01, 2009
Oh, CRAP!
Now I have 4 doctors, as a Radiation Oncologist has been added to the mix. At my first meeting with him, I got to see the pathology reports of what actually happened during the surgery on my neck. That type of information should be read on an empty stomach. It doesn't seem like they could have removed that much and actually left anything.
The radiation treatments are bad. The doctor and PA (Physician's Assistant) were professional, but this will give you the general idea of how the meeting went.
Me: I've heard I might need a feeding tube. What's your experience?
PA: You will love your feeding tube.
Me: Uh, I've had a feeding tube and I hated it.
PA: The radiation is going to give you the equivalent of a severe sunburn - inside your throat.
Me: I had 12 biopsies taken out of my throat. I'm familiar with the mother of all sore throats.
PA: That's not much compared to what you're going to get. If your throat gets so sore you can't swallow water, the feeding tube is our only way to keep you alive.
Well, I'm glad I didn't donate that month's worth of feeding tube formula I have left over from the last time. The damage from the radiation is cumulative and gets worse as the treatments progress.
Ny oncologist says I should have 5 weeks of treatments. The radiologist thinks 7 weeks is the right time frame. I will get radiation every day and chemo on Fridays.
The PA says that one to three weeks after the treatments are over is when I will start recovering from the treatments and getting back to "normal". I have to put "normal" in quotes because I have no idea what "normal" is going to be by then.
Me: Am I going to be able to work during any of this?
Doc: You will be able to work as much as and as long as you can tolerate, but by about the fourth week, the only thing you're going to want to do is to plot my death. You're not going to like me.
Me: When I got my feeding tube put in, I was hoping the doctor who did it had a dog, so that I could wish his dog died and he found it dead in his driveway when he got home from work.
Doc: Compared to me, he's going to be your life-long buddy.
I'm planning on missing about 6 weeks of work in June and July. The first week of August is my target date for discovering what "normal" means. That's about when I should be able to start doing something other than surviving.
When the radiologist examined my neck and throat, he had some concerns about the healing. Me too. If I put enough water in my mouth that it takes 3 or 4 swallows to drink it all, it will leak out of one point in my incision. That got the radiologist on the phone with the surgeon, and the surgeon saw me the same afternoon.
The surgeon thought a minor surgery to assist in healing the incision was the way to go. He had me set that up with his surgery scheduler. May 14 was the available date. By May 14, the incision will be healed. I expect the corrective surgery will be canceled and then I'll start the process of scheduling the radiation again.
The first expectation (back in early March) was that the radiation would start 2 weeks after the surgery. It's looking like 2 months is going to be the interval between surgery and radiation.
The radiation treatments are bad. The doctor and PA (Physician's Assistant) were professional, but this will give you the general idea of how the meeting went.
Me: I've heard I might need a feeding tube. What's your experience?
PA: You will love your feeding tube.
Me: Uh, I've had a feeding tube and I hated it.
PA: The radiation is going to give you the equivalent of a severe sunburn - inside your throat.
Me: I had 12 biopsies taken out of my throat. I'm familiar with the mother of all sore throats.
PA: That's not much compared to what you're going to get. If your throat gets so sore you can't swallow water, the feeding tube is our only way to keep you alive.
Well, I'm glad I didn't donate that month's worth of feeding tube formula I have left over from the last time. The damage from the radiation is cumulative and gets worse as the treatments progress.
Ny oncologist says I should have 5 weeks of treatments. The radiologist thinks 7 weeks is the right time frame. I will get radiation every day and chemo on Fridays.
The PA says that one to three weeks after the treatments are over is when I will start recovering from the treatments and getting back to "normal". I have to put "normal" in quotes because I have no idea what "normal" is going to be by then.
Me: Am I going to be able to work during any of this?
Doc: You will be able to work as much as and as long as you can tolerate, but by about the fourth week, the only thing you're going to want to do is to plot my death. You're not going to like me.
Me: When I got my feeding tube put in, I was hoping the doctor who did it had a dog, so that I could wish his dog died and he found it dead in his driveway when he got home from work.
Doc: Compared to me, he's going to be your life-long buddy.
I'm planning on missing about 6 weeks of work in June and July. The first week of August is my target date for discovering what "normal" means. That's about when I should be able to start doing something other than surviving.
When the radiologist examined my neck and throat, he had some concerns about the healing. Me too. If I put enough water in my mouth that it takes 3 or 4 swallows to drink it all, it will leak out of one point in my incision. That got the radiologist on the phone with the surgeon, and the surgeon saw me the same afternoon.
The surgeon thought a minor surgery to assist in healing the incision was the way to go. He had me set that up with his surgery scheduler. May 14 was the available date. By May 14, the incision will be healed. I expect the corrective surgery will be canceled and then I'll start the process of scheduling the radiation again.
The first expectation (back in early March) was that the radiation would start 2 weeks after the surgery. It's looking like 2 months is going to be the interval between surgery and radiation.
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