Friday had two appointments. 2nd Opinion Oncologist in the morning and Radiation in the afternoon to do prep work for treatments.
Thursday evening was spent mulling over my options about going to MD Anderson for a 3rd opinion but delaying treatment in the process. Some of these recent decisions that seem to have a bit of a Life-or-Death theme to them have made life's previous "big decisions" seem pretty trivial. But thank you to everyone who patiently talked with me Thursday evening.
My 2nd Opinion Oncologist was VERY helpful. First, he agreed with the basic decision that surgery isn't a good option and we should head straight into treatment. He said that he could, or others could, offer variations of the Chemoradiotherapy but that none of those variations have proven more successful than others at curing the cancer. Some seem to have varied side affects and that type stuff, but the basic objective of getting better won't change. We talked specifically about our situation with MD Anderson. He said MD Anderson certainly has a cutting edge center. But he's confident there's nothing in the works right now down there that would apply to me. Not even a need for the physician-to-physician discussion. In fact, he said their version of the Chemoradiotherapy includes a Chemo drug that, inexplicably so far, people from a region of the Midwest -- including Kansas City -- can't tolerate. They'd modify it, of course, but it would be a variation from their standard.
So Jenny and I left there pretty much with a decision in hand. Cancel the MD Anderson appointment and go forward with treatments starting October 6.
Man that feels good!
Went through the afternoon appointment uneventfully. Inject some contrast in me for a CT Scan of my head and neck, make my "mask" then actually do the CT while in the mask. The mask starts out as a flat, hard, plastic mesh shaped generally like a head and shoulders. All around the perimeter -- except across the chest -- there's a solid, hard plastic (I think) with clamps on it. They put the whole thing in hot -- no wait -- VERY hot water to soften the mesh. In the meantime I lay down on my back on the table for the CT. I close my eyes and they take the whole mesh thing and press it down over my face, neck and shoulders, the mesh stretch because it's softened in the VERY hot water, then clamp the edges down to the table. So I'm literally bolted down to the table and couldn't move if I had to. They work to form the mesh closely around my nose, chin, neck, eyes, etc. so that it forms a perfect fit mask. Once it sets up I couldn't even open my eyes. And that contraption does two things. 1) it holds me perfectly still during radiation treatments and 2) they can do all their markings on the mask instead of on me.
In the old days, apparently, markings were done on the skin. Permanant marker and/or tatoos. So I prefer the mask.
From there I went out to work for a few hours. When telling David R about the mask he said that he hopes my nose doesn't start to itch or anything. With that thought now present in my brain I'm confident Mr. Nose is going to itch pretty consistently during treatments.
I've been given instruction to spend the next 10 days eating as much as I can and eating all my favorite foods and, if possible, to gain 10 lbs. Hey, it's doctor's orders!
Jenny and I started the tour last night and went to Stroud's with Liz and Keith. Chicken's good, Chicken Fried Steak is good. But I go there for Pork Chops. Oh, man! If you haven't tried them you need to. I get them broiled with my 'taters mashed and tons o' gravy. Life is good when you're actually TRYING to gain weight. It's like I'm 16 all over again. Well, sorta. At least I'm trying to gain weight.
And by the way, I'm not a "blogger" and have no idea of proper "blogging etiquette". I've enjoyed the posted comments, particularly Ben's insight to possible pronunciations of my Doctor's name, but if I'm supposed to be acknowledging them or replying to them or something, I don't know how. So don't think me rude.
Saturday, September 27, 2008
Friday, September 26, 2008
Nothing's easy
Saw the "special dentist" today. Good news there -- I get to keep all my teeth!! For those who don't know, they proactively extract marginal teeth before radiation treatment because the radiation's so hard on the gums and teeth that marginal teeth will need to be pulled later anyway but, later, the gums and jaw will be less healthy to deal with it. But, non-issue for me hopefully.
From there the day got more confusing. In the process of a few hours MD Anderson called back -- finally -- and actually scheduled me to see one of their top notch docs on Tuesday, Oct 7. My radiation doc, then, shocked me by saying they're ready to begin treatment on Monday, Oct 6.
So, I now need to weigh the tradeoff of delaying treatment for the opportunity to visit with the doc from MD Anderson. Gut tells me the MD Anderson guy is not going to be able to offer me any miracle cure or, even, any super-secret new trial they're running that they THINK will be better. I've read and read and read and it APPEARS everyone does some variation of the same treatment. But do I want to miss this opportunity just in case?
Conversely I've been chompin' at the bit to get started. In my mind I can just see the cancer cells multiplying and multiplying and I am having more and more obstruction in my throat. It's obviously getting bigger and I'm ready to start shrinking it.
We're going to lean on the 2nd opinion Oncologist tomorrow to see if he can't help us squeeze some info out of the MD Anderson folks to see if that trip would be worth our while.
Oh, and to further muddy the waters. The Radiation Doc doesn't think I qualify for the clinical trial I posted about on Tuesday. There's certain criteria you have to meet with the progression of "the disease" and I'm not there yet. I'm not sick enough. I suggested to the Doctor that we could just wait a couple of months. I got him to chuckle. But he was going to talk to the Primary Oncologist Friday to see if that's even an option. Not sure I care but we'll see.
From there the day got more confusing. In the process of a few hours MD Anderson called back -- finally -- and actually scheduled me to see one of their top notch docs on Tuesday, Oct 7. My radiation doc, then, shocked me by saying they're ready to begin treatment on Monday, Oct 6.
So, I now need to weigh the tradeoff of delaying treatment for the opportunity to visit with the doc from MD Anderson. Gut tells me the MD Anderson guy is not going to be able to offer me any miracle cure or, even, any super-secret new trial they're running that they THINK will be better. I've read and read and read and it APPEARS everyone does some variation of the same treatment. But do I want to miss this opportunity just in case?
Conversely I've been chompin' at the bit to get started. In my mind I can just see the cancer cells multiplying and multiplying and I am having more and more obstruction in my throat. It's obviously getting bigger and I'm ready to start shrinking it.
We're going to lean on the 2nd opinion Oncologist tomorrow to see if he can't help us squeeze some info out of the MD Anderson folks to see if that trip would be worth our while.
Oh, and to further muddy the waters. The Radiation Doc doesn't think I qualify for the clinical trial I posted about on Tuesday. There's certain criteria you have to meet with the progression of "the disease" and I'm not there yet. I'm not sick enough. I suggested to the Doctor that we could just wait a couple of months. I got him to chuckle. But he was going to talk to the Primary Oncologist Friday to see if that's even an option. Not sure I care but we'll see.
Tuesday, September 23, 2008
Never Mind on the "We Have A Plan" thing
Saw the Oncologist at KU Med Center. Going in Jenny and I both thought we were going to finalize plans for our 6-week regimen that Dr. Tsue talked to us about. At least that's what we thought Dr. Tsue talked to us about.
We were, instead, presented with three options for treatment.
Option 1: A 6-week regimen of combined Chemotherapy and Radiation -- Chemoradiation Therapy. Five days a week for six weeks. Feel like Hell for most of the treatment time and for a while afterward but it's "only" six weeks.
Option 2: Participate in a Clinical Trial sponsored by the University of Chicago. The "Decide" Clinical Trial that looks at the potential benefits of a 6-week treatment with Chemotherapy alone before starting Chemoradiation Therapy. If I participated I would randomly be placed into a group that did or a group that did not use the 6-week Chemo treatment. i don't pick, the doctor doesn't pick, it's random. Another difference, the Chemoradiation portion of the treatment -- either way -- is administered differently. Different chemo drugs and the treatment is administered in alternating weeks over a 10-week period rather than every week for 6-weeks like Option 1. So this treatment is 10-weeks or 16-weeks depending on which group I'd get assigned to. So it takes a lot longer but patients tend to be not quite as sick with the 10-week Chemoradiation approach.
Option 3: Don't participate in the clinical trial BUT run the 10-week Chemoradiation treatment like I would have gotten in the study, I just get to pick. Again, most people tolerate it a little better but it's an extra month of time.
It sounds like we just need to decide, right? But, of course, it's not that easy. We got home and discovered we had heard a couple of key things differently and that some of the written information we came home with doesn't jive with what we both thought we heard.
So, we have questions to get answered before we can make any decisions.
We do continue to fill up our calendars with more and more appointments.
Good news, we have an appointment Friday morning with another Oncologist. A collegue of Jenny's dad when he was in practice here and he's agreed to meet with us to review the plan to see if it makes sense. A second opinion. Mostly just someone who's knowledgable who can tell us if we're way off base. I don't expect it but this is too important. I'll quit pursuing a second opinion from MD Anderson or Omaha now.
Next week on Tuesday I have a follow-up with today's Oncologist, on Wednesday I have a "swallow test" to set a baseline on what my swallowing capabilities are and, on Thursday, I get my Port and my PEG Tube put in. The Port is basically a semi-permanent I.V. and the PEG Tube is a feeding tube so I can suppliment whatever nutrition I'm able to get down with a sore, swollen throat. We think this translates to an overnight stay at the Hospital Thursday night but that's another question.
So, we're flying forward toward the beginning of some treatment, just not sure what that treatment will be. Geez, this was a long one. Sorry.
We were, instead, presented with three options for treatment.
Option 1: A 6-week regimen of combined Chemotherapy and Radiation -- Chemoradiation Therapy. Five days a week for six weeks. Feel like Hell for most of the treatment time and for a while afterward but it's "only" six weeks.
Option 2: Participate in a Clinical Trial sponsored by the University of Chicago. The "Decide" Clinical Trial that looks at the potential benefits of a 6-week treatment with Chemotherapy alone before starting Chemoradiation Therapy. If I participated I would randomly be placed into a group that did or a group that did not use the 6-week Chemo treatment. i don't pick, the doctor doesn't pick, it's random. Another difference, the Chemoradiation portion of the treatment -- either way -- is administered differently. Different chemo drugs and the treatment is administered in alternating weeks over a 10-week period rather than every week for 6-weeks like Option 1. So this treatment is 10-weeks or 16-weeks depending on which group I'd get assigned to. So it takes a lot longer but patients tend to be not quite as sick with the 10-week Chemoradiation approach.
Option 3: Don't participate in the clinical trial BUT run the 10-week Chemoradiation treatment like I would have gotten in the study, I just get to pick. Again, most people tolerate it a little better but it's an extra month of time.
It sounds like we just need to decide, right? But, of course, it's not that easy. We got home and discovered we had heard a couple of key things differently and that some of the written information we came home with doesn't jive with what we both thought we heard.
So, we have questions to get answered before we can make any decisions.
We do continue to fill up our calendars with more and more appointments.
Good news, we have an appointment Friday morning with another Oncologist. A collegue of Jenny's dad when he was in practice here and he's agreed to meet with us to review the plan to see if it makes sense. A second opinion. Mostly just someone who's knowledgable who can tell us if we're way off base. I don't expect it but this is too important. I'll quit pursuing a second opinion from MD Anderson or Omaha now.
Next week on Tuesday I have a follow-up with today's Oncologist, on Wednesday I have a "swallow test" to set a baseline on what my swallowing capabilities are and, on Thursday, I get my Port and my PEG Tube put in. The Port is basically a semi-permanent I.V. and the PEG Tube is a feeding tube so I can suppliment whatever nutrition I'm able to get down with a sore, swollen throat. We think this translates to an overnight stay at the Hospital Thursday night but that's another question.
So, we're flying forward toward the beginning of some treatment, just not sure what that treatment will be. Geez, this was a long one. Sorry.
Friday, September 19, 2008
Appointments Scheduled
Dorothy called today from Dr. Tsue's office. They were quicker than expected with the appointments. The Oncologist Appointment is next Tuesday (Sept 23) morning. The Dentist and Radiologist are both on Thursday (Sept 25).
Still no word back from MD Anderson and I don't think the Omaha option is a good one now that things are moving a little quicker here than expected. I'll look into some options locally.
Still no word back from MD Anderson and I don't think the Omaha option is a good one now that things are moving a little quicker here than expected. I'll look into some options locally.
Thursday, September 18, 2008
And, we have a plan
Saw Dr. Tsue this afternoon -- and evening. His coordinator had warned us that our 3:00 appointment time won't mean that we'll see the Doctor at 3:00. It will likely be well after 3:00 before we get in. Good thing she warned us.
We got called back from the waiting room at 5:30 and left his office at 6:45. A long afternoon. But it was OK because it wasn't like we were anxious or were waiting to get any life changing information or anything like that.
But, we did get in and, other than the scheduling, we liked Dr. Tsue and his staff. We didn't like all the news they gave us, though.
The PET Scan showed the cancer had spread to one lymph node on the left side of my neck. That's the only spreading, and that's good, but we'd have preferred no spreading, of course. The size of the tumor and the fact that it has attached to a few places in my throat -- thereby spreading into some of the soft tissue -- leads them to suggest we NOT remove the tumor surgically. They said to remove it and to create their margins they would have to remove too much tissue and I'd have some serious long-term consequences to my swallowing, saliva production, etc., etc.
Instead they recommended a six-week regimen of combined Chemo and Radiation. They said this has near identical success rates to surgery for treating the cancer itself and, though it has it's own set of significant long term consequences, those consequences would be much less significant than those from Surgery.
They'll set us up with appointments with an Oncologist, a Radiation Doctor and a Dentist. The Dentist is to look at my teeth because Radiation is hard on teeth and will cause any marginal teeth to fall out. Rather than wait for that to happen they'll pull any marginal teeth now while the gums are healthy. She thought they could get the Dentist scheduled for next week but expected the Oncologist and Radiation appointments to fall into the week of Sept 29.
I hate all this waiting but, as long as we're waiting, maybe we pursue this 2nd opinion thing some more.
We got called back from the waiting room at 5:30 and left his office at 6:45. A long afternoon. But it was OK because it wasn't like we were anxious or were waiting to get any life changing information or anything like that.
But, we did get in and, other than the scheduling, we liked Dr. Tsue and his staff. We didn't like all the news they gave us, though.
The PET Scan showed the cancer had spread to one lymph node on the left side of my neck. That's the only spreading, and that's good, but we'd have preferred no spreading, of course. The size of the tumor and the fact that it has attached to a few places in my throat -- thereby spreading into some of the soft tissue -- leads them to suggest we NOT remove the tumor surgically. They said to remove it and to create their margins they would have to remove too much tissue and I'd have some serious long-term consequences to my swallowing, saliva production, etc., etc.
Instead they recommended a six-week regimen of combined Chemo and Radiation. They said this has near identical success rates to surgery for treating the cancer itself and, though it has it's own set of significant long term consequences, those consequences would be much less significant than those from Surgery.
They'll set us up with appointments with an Oncologist, a Radiation Doctor and a Dentist. The Dentist is to look at my teeth because Radiation is hard on teeth and will cause any marginal teeth to fall out. Rather than wait for that to happen they'll pull any marginal teeth now while the gums are healthy. She thought they could get the Dentist scheduled for next week but expected the Oncologist and Radiation appointments to fall into the week of Sept 29.
I hate all this waiting but, as long as we're waiting, maybe we pursue this 2nd opinion thing some more.
Wednesday, September 17, 2008
Second Opinion?
We've spent a good bit of time this week trying to figure out if we can get a second opinion, if we should get a second opinion, who we should get a second opinion with, etc., etc.
I've discovered that I have some options through my health insurance to go to one of several Cancer Centers across the country. I could go there for treatment or for a second opinion. This sounds like a great option but the logistics are still cumbersome. MD Anderson was closed until today because of Hurricane Ike. I entered a self-referral through their website, though. I talked to the University of Nebraska Cancer Center in Omaha. Their next available appointment date is October 8th. It's clear a 2nd opinion -- at least from one of these facilities -- will delay treatment.
I went to KU Med Center for my PET Scan and Chest CT today. I guess I'll get the results tomorrow.
I've discovered that I have some options through my health insurance to go to one of several Cancer Centers across the country. I could go there for treatment or for a second opinion. This sounds like a great option but the logistics are still cumbersome. MD Anderson was closed until today because of Hurricane Ike. I entered a self-referral through their website, though. I talked to the University of Nebraska Cancer Center in Omaha. Their next available appointment date is October 8th. It's clear a 2nd opinion -- at least from one of these facilities -- will delay treatment.
I went to KU Med Center for my PET Scan and Chest CT today. I guess I'll get the results tomorrow.
Friday, September 12, 2008
A tough 24 hours
On top of everything that's going on with my tonsils -- and maybe because of it -- my shoulder's been really giving me fits this week after surgery. Yesterday it got REALLY bad and I wound up leaving work mid-afternoon and, after a few phone calls back and forth with Jenny and the Doctor's office, Jenny and I wound up at the Emergency room.
It was the worst pain I had ever experienced and it was just there. It didn't come and go or anything. My shoulder, my upper arm, my back and up into my neck. I couldn't do anything to relieve it.
They gave me some of what they said was the strongest stuff they had and, after a while, I got to a point I could sit still and manage and, mostly, was just drugged stupid. They checked for a blood clot and did an X-Ray to check for damage but found nothing.
Eventually they sent me home and told me to visit my Orthopedic surgeon the next day -- today. I saw him this afternoon and he said that I just got into a situation where everything was swelling up and was putting pressure on nerves and causing some pretty severe pain. Sounds simple. He gave me more drugs to manage the pain, drugs to help me sleep and told me to keep ice on it as much as possible to keep the swelling down.
On the way home my ENT called with Biopsy results. As expected, it's positive. Squamous Cell. Not the best cancer to get but certainly not the worst. They've referred me to Dr. Terance Tsue at KU Med Center and I have an appointment with him on Thursday, Sept 18 and a PET Scan and Chest CT Scan the day before.
Waiting and not knowing is the worst part. Hopefully Thursday we'll get the rest of the answers about what we're dealing with and what the treatment plan is going forward.
It was the worst pain I had ever experienced and it was just there. It didn't come and go or anything. My shoulder, my upper arm, my back and up into my neck. I couldn't do anything to relieve it.
They gave me some of what they said was the strongest stuff they had and, after a while, I got to a point I could sit still and manage and, mostly, was just drugged stupid. They checked for a blood clot and did an X-Ray to check for damage but found nothing.
Eventually they sent me home and told me to visit my Orthopedic surgeon the next day -- today. I saw him this afternoon and he said that I just got into a situation where everything was swelling up and was putting pressure on nerves and causing some pretty severe pain. Sounds simple. He gave me more drugs to manage the pain, drugs to help me sleep and told me to keep ice on it as much as possible to keep the swelling down.
On the way home my ENT called with Biopsy results. As expected, it's positive. Squamous Cell. Not the best cancer to get but certainly not the worst. They've referred me to Dr. Terance Tsue at KU Med Center and I have an appointment with him on Thursday, Sept 18 and a PET Scan and Chest CT Scan the day before.
Waiting and not knowing is the worst part. Hopefully Thursday we'll get the rest of the answers about what we're dealing with and what the treatment plan is going forward.
Wednesday, September 10, 2008
Scan Results
Visited the ENT today to go over the results of the MRI and CT Scan from Monday. Actually good news there. It looks like there's minimal, if any, growth into the soft tissue of the throat and mouth. This would have been a huge complicator if there were much growth there.
He numbed up my throat, got out a pair of scissors and cut a couple of pieces of the tonsil out to use for a biopsy. He said there's no reason we can't hold out hope, but he's pretty confident the biopsy is going to come back positive. We're keeping our fingers crossed but I think the real reason for the biopsy is to determine the type of cancer rather than if it's there or not.
Reality is starting to sink in.
He numbed up my throat, got out a pair of scissors and cut a couple of pieces of the tonsil out to use for a biopsy. He said there's no reason we can't hold out hope, but he's pretty confident the biopsy is going to come back positive. We're keeping our fingers crossed but I think the real reason for the biopsy is to determine the type of cancer rather than if it's there or not.
Reality is starting to sink in.
Monday, September 8, 2008
The Scans
Had my MRI and CT Scans this afternoon. Afterward I hung around and got copies of the films to hand deliver to the Doctor's office. I also took a copy of the April MRI I had of my neck when they thought my shoulder problems might be a nerve problem in the neck. They weren't scanning my tonsils but they should show up and give the doctor something to compare to.
The Doctor's office called the house late this afternoon and scheduled an appointment for Wednesday morning to review the scan and to extract some of the tonsil for a biopsy.
The Doctor's office called the house late this afternoon and scheduled an appointment for Wednesday morning to review the scan and to extract some of the tonsil for a biopsy.
Thursday, September 4, 2008
The day it begins
A BRIEF history of how we got to where we are.
After battling a sinus infection most of the summer, I thought the congestion in the back of my throat was the lingering affects of the infection. Finally in early-to-mid August I started thinking maybe it was something else so I called the ENT for an appointment. With shoulder surgery scheduled for August 29th I opted for the September 4th appointment so I could go while I was already off work from the surgery.
So today my ENT showed me what I can't believe I hadn't already seen. My left tonsil was pretty big. After sticking things in my nose and down my throat, including his hands, he told me he wouldn't know until he had a biopsy but he was pretty confident this was a cancerous growth.
HOLY CRAP! Not what I was expecting out of the appointment. He scheduled an appointment for an MRI and a CT Scan on my throat/neck on Monday to see where it has and hasn't grown.
Jenny and I aren't sure what to think. Scared to death, of course, but we know so little at this point.
After battling a sinus infection most of the summer, I thought the congestion in the back of my throat was the lingering affects of the infection. Finally in early-to-mid August I started thinking maybe it was something else so I called the ENT for an appointment. With shoulder surgery scheduled for August 29th I opted for the September 4th appointment so I could go while I was already off work from the surgery.
So today my ENT showed me what I can't believe I hadn't already seen. My left tonsil was pretty big. After sticking things in my nose and down my throat, including his hands, he told me he wouldn't know until he had a biopsy but he was pretty confident this was a cancerous growth.
HOLY CRAP! Not what I was expecting out of the appointment. He scheduled an appointment for an MRI and a CT Scan on my throat/neck on Monday to see where it has and hasn't grown.
Jenny and I aren't sure what to think. Scared to death, of course, but we know so little at this point.
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