Friday, December 28, 2012
Pieces Are Coming Together
Got the "Port" installation scheduled for next Thursday - Jan 3, with start of Radiation treatment now scheduled in for Monday, the 7th at7:30am. Just need confirmation of "start time" from the Chemo side of things and everything will be in place.
Thursday, December 27, 2012
27 Dec - Radiation Mask
I got fitted with a "radiation mask" this morning. This is a plastic fabric mesh that was soaked in water and then "form fitted" over my face and neck, while I lay on my back on the "table". The mesh stiffened in place as it dried and there are multiple clamps which attach to the "table" so that I can be precisely positioned for each radiation treatment.
I continue to call the Hematology Oncology department (Chemo) to get the Med Port Installation scheduled. I was advised today that the "order" has been placed and I should be called by tomorrow at noon with the schedule.
Assuming things go as planned, I will start Chemo and Radiation Therapies on Monday, January 7.
I continue to call the Hematology Oncology department (Chemo) to get the Med Port Installation scheduled. I was advised today that the "order" has been placed and I should be called by tomorrow at noon with the schedule.
Assuming things go as planned, I will start Chemo and Radiation Therapies on Monday, January 7.
Monday, December 24, 2012
24 Dec - Upcoming events, prep for treatment
24 Dec --
This Thursday, the 27th, I see the Radiation Oncologist to "calibrate" my Radiation treatment. There is some sort of mask, which I assume will have aiming points for the radiation. I believe this also involves another CT Scan to assist with imaging the tumor(s) and setting controls on the radiation field.
I'm also trying to schedule the (surgical) installation of the "med port" into my chest to assist with the administration of the chemotherapy, the "hydration" IV's, and the many blood draws that will be needed over the course of treatment. Obviously, this is needed prior to the targeted start of treatment on Jan 7.
I've been doing my "exercises" every day since meeting with the speech pathologist. It's just practice swallowing....swallow really hard, then swallow 5 times while holding my tongue between my teeth, repeat 5 times....do this 3 to five times a day. At the end of each, there's some neck stretches/range of motion stuff. I imagine this will get hard (and painful) after the treatment starts -- but I truly believe the speech pathologist regarding how critical this is to my recovery.
How do I feel, you wonder? Well, physically, nothing at all has changed in how I feel. I used to think this lump was just a swollen gland -- and I thought I was perfectly healthy. Now, I know that I'm not healthy but, honestly, I don't feel bad. I admit that now that I know what is going on, I can actually feel some obstruction when I do the hard swallowing exercises. And, no doubt, I am quite anxious about what is coming. But, I'm sure I'll be OK. The one thing that worries me is losing my saliva and sense of taste...that's going to suck. I'll just have to hope it comes back -- and enjoy it when it does.
Oh yeah, Merry Christmas! (Or Happy Christmas! If you're English)
This Thursday, the 27th, I see the Radiation Oncologist to "calibrate" my Radiation treatment. There is some sort of mask, which I assume will have aiming points for the radiation. I believe this also involves another CT Scan to assist with imaging the tumor(s) and setting controls on the radiation field.
I'm also trying to schedule the (surgical) installation of the "med port" into my chest to assist with the administration of the chemotherapy, the "hydration" IV's, and the many blood draws that will be needed over the course of treatment. Obviously, this is needed prior to the targeted start of treatment on Jan 7.
I've been doing my "exercises" every day since meeting with the speech pathologist. It's just practice swallowing....swallow really hard, then swallow 5 times while holding my tongue between my teeth, repeat 5 times....do this 3 to five times a day. At the end of each, there's some neck stretches/range of motion stuff. I imagine this will get hard (and painful) after the treatment starts -- but I truly believe the speech pathologist regarding how critical this is to my recovery.
How do I feel, you wonder? Well, physically, nothing at all has changed in how I feel. I used to think this lump was just a swollen gland -- and I thought I was perfectly healthy. Now, I know that I'm not healthy but, honestly, I don't feel bad. I admit that now that I know what is going on, I can actually feel some obstruction when I do the hard swallowing exercises. And, no doubt, I am quite anxious about what is coming. But, I'm sure I'll be OK. The one thing that worries me is losing my saliva and sense of taste...that's going to suck. I'll just have to hope it comes back -- and enjoy it when it does.
Oh yeah, Merry Christmas! (Or Happy Christmas! If you're English)
Saturday, December 22, 2012
22 Dec 2012 - Revelation...finally
2012-12-22: Told the girls today. Around noon. Seemed to go OK. There were tears -- but they listened and seemed to grasp that the cancer is treatable...curable, even...but there will be some tough times ahead.
So, the gory details and timeline for those interested.
On Oct 1, I went to see my doc about what I believed was simply a swollen lymph node on the left side of my jaw. I figured I'd had a virus or some infection and it just wasn't clearing out -- or was very localized since the node on the opposite side was not also swollen. Doc agreed it was large and prescribed Augmentin and said, "If it doesn't go down by half in two weeks, come back." She also took blood - CBC, SED Rate, and LDH -- all normal. Went back on Oct 18 -- swelling had not gone down. She referred me to an ENT.
Since I have a friend who is an ENT, I gave her office his name and they set up an appointment. Nov 20 was the earliest available. My ENT agreed there was a mass in my neck but could not see anything -- even after snaking a camera down my left nostril! He ordered a C/T Scan with Contrast of the neck which was scheduled for Tuesday morning, Nov 27 and he set a follow-up for Dec 5. On Weds, Nov 28 he phoned and said they needed a (needle) biopsy, too, and that was scheduled for Friday, Nov 30 (at 7am) -- and I'd have to have a ride home. I'd gone to all these appointments alone, so this was the first time my wife would join me....sort of.
She dropped me off at Kettering Medical Center before 7 and went back home to get the girls off to school. After check-in, I was taken up to a room for more medical history questions. I was left in the room for nearly an hour and my "chart" was left behind. I read checked out the chart and found the radiologist report from the C/T Scan. It read: "...the findings are suspicious for squameous cell carcinoma in this location...." This was my first hint that the swollen lymph node was in fact a tumor and that I have cancer! The biopsy was unremarkable, although I am suspicious that it shouldn't have taken three "shots" with the spring-loaded needle to get a sample. The area was numb, but it swelled up worse even after icing it. I had to stay home from work the rest of the day.
On Wednesday, Dec 5, my wife and I went to the follow-up appointment with the ENT. He somberly informed us that I had cancer. He had mentioned that the biopsy would be "stained" to check for HPV, but he did not have that information and he asked his staff to follow-up on that point. Much of the rest of this meeting is a blur to me, but it was clear that this cancer could not be ignored and that treatment could be any combination of surgery, chemotherapy, and radiation. His recommendation was that if it was a candidate for surgery, to go to Ohio State where they were on the leading edge of robotic surgeries for this type of cancer. However, any treatment regimen was very likely require radiation which would mean around 40 visits, so we might want to consider University of Cincinnati (UC) since it is so much more convenient. No matter what, he strongly recommended a research hospital where I could get the latest and greatest treatment. After much discussion, we opted for UC and his office set up an appointment for Monday, Dec 10, with a surgeon specializing in Head and Neck Surgical Oncology. The ENT suspected that the Oncologist would want a PET scan (which he did), and his office arranged for that to occur on Friday, Dec 7 back at Kettering.
On Friday, I arrived at Kettering at 7am and checked in. At about 7:40 I got called to the window and informed that not all of my paperwork was done -- the doctor's "order" had not made it in and until they could find it in the system, I'd have to wait. And wait I did. Until about 8:20. The PET scan took close to two hours to complete. For the first hour, I was injected with a radioactive "tracer" and then sat in a quiet dark room for an hour. Next, I had a series of CAT Scans from my head down to mid-thigh -- basically covering any part of me with lymph nodes to see if there were additional cancer sites. I left KMC around 11:30am with a CD-ROM containing the images, but the Radiologist report would not be ready until the afternoon and would be faxed to the ordering doctor and to the doc I would see on Monday.
On Monday the 10th, I met the surgeon who described the general treatment for this type of cancer as a choice between surgery with radiation or a combined course of chemo and radiation. The choice would depend on exactly where it was located and if the tumor was HPV Positive or not. HPV+ tumors of the head and neck are very responsive to Radiation....to the point that someday, it seems, radiation alone (no chemo) will be the standard treatment. However, he needed a biopsy and he wanted to see the tumor so that a proper decision could be made regarding whether surgery was advised or not. He described a "tumor board" that would meet and review my case, so the decision to perform surgery or not is not simply left up to surgeons, but is discussed by representatives of the entire oncology department. As luck would have it, his office had OR time scheduled for tomorrow (Dec 11) afternoon and there had been a cancellation -- so I took it. We also made a follow-up appointment for the following Monday, Dec 17. (And, interestingly, his office also made an appointment with a Radiation Oncologist for Thursday, Dec 20.)
The Endoscopy with Biopsy was scheduled at UC Hospital in downtown Cincy (an hour away) -- I'd been going to a satellite facility in West Chester, OH which is 40 minutes from home and only 25 minutes from work. The appointment was for 2pm -- get there at 12 to check-in and be prepped. We saw the surgeon not long after noon, he advised us things were running late by at least an hour -- and so they were. We started around 3:30 and I woke up from anesthesia around 5:20. We left the hospital around 6:30 and got home around 7:30. We'd told the girls that we went to a financial planning seminar and that we'd gotten the time wrong so had to attend a later session. We really didn't want to tell them until we knew what we'd be telling them -- what is it, exactly, and what are we going to do about it. Plus, with exams we really didn't want to destroy an entire semester's hard work with this shocking news.
On the 17th we returned to the surgeon's office. He told us the tumor board met and felt this case was best handled by a combination of chemo and radiation. The tumor is HPV+ (for strain 16) and it was in two place -- the "primary site" is the base of the tongue on the left side and that site is about 2cm in size. The secondary site is the lymph node(s) that I had felt and they believe that is a tumor that is connecting several lymph nodes -- total size is roughly 3.7cm there. Because it is two sites and the size they have deemed the stage to be T2N2bM0. The radiologist's report on the PET scan is that there are no tumors elsewhere in the body. This cancer is a good candidate for Chemo+Radiation which is less invasive that Surgery+Radiation. Because I'm young, otherwise healthy, and a non-smoker we are talking about "cure", not "remission", with the expectation that I will be completely cancer-free at the end of this treatment. This doc referred me on to a Chemo guy and a Radiation guy, along with a Speech Pathologist. I'll have a follow-up in April with the surgeon, after the treatment and a follow-up PET scan. The office scheduled additional appointments for Wednesday, the 19th, with the Chemo guy and with the Speech Pathologist on the 20th to go with the existing appointment on Thursday the 20th with the Radiation Oncologist.
The wife had a conflict on Wednesday so I went to that appointment alone. Honestly, it was pretty grim. Here's where I found out I would have a "med port" surgically inserted so that it would be easier to administer the chemo drugs, the IV hydration, and take all the blood tests that would be needed. I could do without, but I'd probably regret it -- not least because the staff would not enjoy having to "find a vein" all the time, especially as we got further along in the treatment. So....no brainer on that one. The other shock was the recommendation that I have a "G tube" inserted into my stomach for feeding -- as the treatment progresses, swallowing will become difficult and if it becomes too difficult the "G tube" can be used for feeding. At that point, you're too weak to do an insertion, so you're left with a feeding tube snaked down your nose -- no fun at all. The "G tube" is a self-service, do it at home, no fuss kind of thing -- but it creeps me out. The doc and I talked a bit about the chemo, its effects, how much was needed, why it was needed at all. He was a great guy with "straight" answers. I feel very comfortable that his only concern is eliminating the cancer in my body. We discussed start dates -- he told me that Radiation sets the schedule as he only needs about 48 hours notice (to order the drug) in order to get started.
On Thursday, we met the Radiation Oncologist...and his Resident. First we met the resident who did an review of the case and we discussed the radiation treatment. I mentioned my discomfort with the concept of the "G tube" and he said the Doc would discuss that but that his department (and the surgery department) do not do those as a standard procedure -- only in high risk cases...less than 30% of patients and that I was the kind of patient that they do not want using a G-tube as it would slow down recovery from treatment. Additionally, they told me about a "study" they were doing -- to test newer, less harsh chemo treatments. Whereas, the current, standard protocol (10 years old?) is for 35 treatments with Radiation and 3 cycles of Cisplatin (Chemo) -- in the study there would be either 2 cycles of Cisplatin or a new(er) and less severe side-effects drug "Erbitux". The drug, Erbitux is in use today but is only used for patients with existing Kidney issues -- as the Cisplatin is very hard on the kidneys, especially in older or weaker patients. The Chemo guy was not worried about my ability to tolerate the full 3 courses of Cisplatin, so he didn't feel I was a good candidate for the study...."why take less treatment when you can obviously handle the full amount?" Whereas the Radiation guys ask, why do all that chemo if it isn't needed...? In the end, this is a decision I'll have to make within the next week if I want to stay on track for a Jan 7 start date for therapy.
Soon I'll post about my meeting with the speech pathologist and the exercises I'm already doing to strengthen my swallowing muscles and that I'll keep doing through the therapy so that I don't lose that ability....which would be absolutely debilitating.
So, the gory details and timeline for those interested.
On Oct 1, I went to see my doc about what I believed was simply a swollen lymph node on the left side of my jaw. I figured I'd had a virus or some infection and it just wasn't clearing out -- or was very localized since the node on the opposite side was not also swollen. Doc agreed it was large and prescribed Augmentin and said, "If it doesn't go down by half in two weeks, come back." She also took blood - CBC, SED Rate, and LDH -- all normal. Went back on Oct 18 -- swelling had not gone down. She referred me to an ENT.
Since I have a friend who is an ENT, I gave her office his name and they set up an appointment. Nov 20 was the earliest available. My ENT agreed there was a mass in my neck but could not see anything -- even after snaking a camera down my left nostril! He ordered a C/T Scan with Contrast of the neck which was scheduled for Tuesday morning, Nov 27 and he set a follow-up for Dec 5. On Weds, Nov 28 he phoned and said they needed a (needle) biopsy, too, and that was scheduled for Friday, Nov 30 (at 7am) -- and I'd have to have a ride home. I'd gone to all these appointments alone, so this was the first time my wife would join me....sort of.
She dropped me off at Kettering Medical Center before 7 and went back home to get the girls off to school. After check-in, I was taken up to a room for more medical history questions. I was left in the room for nearly an hour and my "chart" was left behind. I read checked out the chart and found the radiologist report from the C/T Scan. It read: "...the findings are suspicious for squameous cell carcinoma in this location...." This was my first hint that the swollen lymph node was in fact a tumor and that I have cancer! The biopsy was unremarkable, although I am suspicious that it shouldn't have taken three "shots" with the spring-loaded needle to get a sample. The area was numb, but it swelled up worse even after icing it. I had to stay home from work the rest of the day.
On Wednesday, Dec 5, my wife and I went to the follow-up appointment with the ENT. He somberly informed us that I had cancer. He had mentioned that the biopsy would be "stained" to check for HPV, but he did not have that information and he asked his staff to follow-up on that point. Much of the rest of this meeting is a blur to me, but it was clear that this cancer could not be ignored and that treatment could be any combination of surgery, chemotherapy, and radiation. His recommendation was that if it was a candidate for surgery, to go to Ohio State where they were on the leading edge of robotic surgeries for this type of cancer. However, any treatment regimen was very likely require radiation which would mean around 40 visits, so we might want to consider University of Cincinnati (UC) since it is so much more convenient. No matter what, he strongly recommended a research hospital where I could get the latest and greatest treatment. After much discussion, we opted for UC and his office set up an appointment for Monday, Dec 10, with a surgeon specializing in Head and Neck Surgical Oncology. The ENT suspected that the Oncologist would want a PET scan (which he did), and his office arranged for that to occur on Friday, Dec 7 back at Kettering.
On Friday, I arrived at Kettering at 7am and checked in. At about 7:40 I got called to the window and informed that not all of my paperwork was done -- the doctor's "order" had not made it in and until they could find it in the system, I'd have to wait. And wait I did. Until about 8:20. The PET scan took close to two hours to complete. For the first hour, I was injected with a radioactive "tracer" and then sat in a quiet dark room for an hour. Next, I had a series of CAT Scans from my head down to mid-thigh -- basically covering any part of me with lymph nodes to see if there were additional cancer sites. I left KMC around 11:30am with a CD-ROM containing the images, but the Radiologist report would not be ready until the afternoon and would be faxed to the ordering doctor and to the doc I would see on Monday.
On Monday the 10th, I met the surgeon who described the general treatment for this type of cancer as a choice between surgery with radiation or a combined course of chemo and radiation. The choice would depend on exactly where it was located and if the tumor was HPV Positive or not. HPV+ tumors of the head and neck are very responsive to Radiation....to the point that someday, it seems, radiation alone (no chemo) will be the standard treatment. However, he needed a biopsy and he wanted to see the tumor so that a proper decision could be made regarding whether surgery was advised or not. He described a "tumor board" that would meet and review my case, so the decision to perform surgery or not is not simply left up to surgeons, but is discussed by representatives of the entire oncology department. As luck would have it, his office had OR time scheduled for tomorrow (Dec 11) afternoon and there had been a cancellation -- so I took it. We also made a follow-up appointment for the following Monday, Dec 17. (And, interestingly, his office also made an appointment with a Radiation Oncologist for Thursday, Dec 20.)
The Endoscopy with Biopsy was scheduled at UC Hospital in downtown Cincy (an hour away) -- I'd been going to a satellite facility in West Chester, OH which is 40 minutes from home and only 25 minutes from work. The appointment was for 2pm -- get there at 12 to check-in and be prepped. We saw the surgeon not long after noon, he advised us things were running late by at least an hour -- and so they were. We started around 3:30 and I woke up from anesthesia around 5:20. We left the hospital around 6:30 and got home around 7:30. We'd told the girls that we went to a financial planning seminar and that we'd gotten the time wrong so had to attend a later session. We really didn't want to tell them until we knew what we'd be telling them -- what is it, exactly, and what are we going to do about it. Plus, with exams we really didn't want to destroy an entire semester's hard work with this shocking news.
On the 17th we returned to the surgeon's office. He told us the tumor board met and felt this case was best handled by a combination of chemo and radiation. The tumor is HPV+ (for strain 16) and it was in two place -- the "primary site" is the base of the tongue on the left side and that site is about 2cm in size. The secondary site is the lymph node(s) that I had felt and they believe that is a tumor that is connecting several lymph nodes -- total size is roughly 3.7cm there. Because it is two sites and the size they have deemed the stage to be T2N2bM0. The radiologist's report on the PET scan is that there are no tumors elsewhere in the body. This cancer is a good candidate for Chemo+Radiation which is less invasive that Surgery+Radiation. Because I'm young, otherwise healthy, and a non-smoker we are talking about "cure", not "remission", with the expectation that I will be completely cancer-free at the end of this treatment. This doc referred me on to a Chemo guy and a Radiation guy, along with a Speech Pathologist. I'll have a follow-up in April with the surgeon, after the treatment and a follow-up PET scan. The office scheduled additional appointments for Wednesday, the 19th, with the Chemo guy and with the Speech Pathologist on the 20th to go with the existing appointment on Thursday the 20th with the Radiation Oncologist.
The wife had a conflict on Wednesday so I went to that appointment alone. Honestly, it was pretty grim. Here's where I found out I would have a "med port" surgically inserted so that it would be easier to administer the chemo drugs, the IV hydration, and take all the blood tests that would be needed. I could do without, but I'd probably regret it -- not least because the staff would not enjoy having to "find a vein" all the time, especially as we got further along in the treatment. So....no brainer on that one. The other shock was the recommendation that I have a "G tube" inserted into my stomach for feeding -- as the treatment progresses, swallowing will become difficult and if it becomes too difficult the "G tube" can be used for feeding. At that point, you're too weak to do an insertion, so you're left with a feeding tube snaked down your nose -- no fun at all. The "G tube" is a self-service, do it at home, no fuss kind of thing -- but it creeps me out. The doc and I talked a bit about the chemo, its effects, how much was needed, why it was needed at all. He was a great guy with "straight" answers. I feel very comfortable that his only concern is eliminating the cancer in my body. We discussed start dates -- he told me that Radiation sets the schedule as he only needs about 48 hours notice (to order the drug) in order to get started.
On Thursday, we met the Radiation Oncologist...and his Resident. First we met the resident who did an review of the case and we discussed the radiation treatment. I mentioned my discomfort with the concept of the "G tube" and he said the Doc would discuss that but that his department (and the surgery department) do not do those as a standard procedure -- only in high risk cases...less than 30% of patients and that I was the kind of patient that they do not want using a G-tube as it would slow down recovery from treatment. Additionally, they told me about a "study" they were doing -- to test newer, less harsh chemo treatments. Whereas, the current, standard protocol (10 years old?) is for 35 treatments with Radiation and 3 cycles of Cisplatin (Chemo) -- in the study there would be either 2 cycles of Cisplatin or a new(er) and less severe side-effects drug "Erbitux". The drug, Erbitux is in use today but is only used for patients with existing Kidney issues -- as the Cisplatin is very hard on the kidneys, especially in older or weaker patients. The Chemo guy was not worried about my ability to tolerate the full 3 courses of Cisplatin, so he didn't feel I was a good candidate for the study...."why take less treatment when you can obviously handle the full amount?" Whereas the Radiation guys ask, why do all that chemo if it isn't needed...? In the end, this is a decision I'll have to make within the next week if I want to stay on track for a Jan 7 start date for therapy.
Soon I'll post about my meeting with the speech pathologist and the exercises I'm already doing to strengthen my swallowing muscles and that I'll keep doing through the therapy so that I don't lose that ability....which would be absolutely debilitating.
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