In case I don't get a chance tomorrow or over the weekend...
After every 2 chemo treatments, I will have some tests done, to chart or track the progress I'm making.
Tomorrow I will have a CT Scan done, and then Wednesday 2/4/09, I will get the results when I go visit Dr. Dan again.
I'm not sure exactly what the results will be, but visually things are looking GREAT!
This whole thing started because I had a rather large lump growing right where my neck met my chin/face on the side of my neck. That lump is all but gone. Visually you can't see it any more (it was quite noticeable before). The lymph nodes under my underarms are also gone, along with those in my groin area.
If you feel for the lymph nodes in the various areas, you can still tell they are all a little swollen, but I'm not at all bothered by that. They are decreasing in size, and at quite a dramatic rate -- at least as far as the wife and I are concerned.
I'm sure the results of the scans will show that I still have cancer, but the amount of cancer will be GREATLY decreased, and I'm only 1/3 through my treatments.
At this point, I would say things are VERY POSITIVE!
I'll post results next Wednesday. The next chemo treatment will be Friday (2/6/09).
That's all for now.
Thursday, January 29, 2009
Sunday, January 25, 2009
Post 11 -- Post-Session 2
OK, rather than trying to cover everything that has transpired since the last post individually, I'll do it all here in one concise post.
EVERYTHING tastes and smells different. Nothing really tastes or smells good for about 1.5 ~ 2 weeks after the chemo, but most things are tolerable. Because of this factor, and the fact that I lost my appetite for over a week following the first treatment, I lost 14 pounds. I have since gained about 5 of that back, despite a 2nd chemo treatment. Understand that I'm just shy of 6'1" and started out weighing 178lbs. the morning of the first treatment. I didn't really need to lose 14 pounds.
Energy level definitely goes down, but so far I'm still able to go to the gym on a somewhat regular basis. Although, I only do 20~25 minutes of vigorous cardio and some ab work. I can, however, tell that my energy level ebs and flows pretty much as described by Dr. Dan.
Following chemo (remember I have 3 weeks between treatments), my energy level isn't all that bad. My appetite is gone, and most of the energy loss I feel is related to the fact that I just don't eat much... then about 8-12 days after the chemo treatment, I can just feel the energy drain. At this point, I'm eating regularly and regular stuff... pretty much anything I want, though greasy food is just NOT appealing (I tended to shy away before, but now the idea is just not good for the tummy). Anyways... 8-12 days after chemo, the energy just drains. I'm 36 years old, and in pretty decent shape. I hate having to admit that I just can't do everything I want to do, but I'm intelligent enough to know that if I push my body, it will push back... eventually, in the end, my body will win.
If you are going through this, listen to your body. Don't push it. Your body is fighting it's own battle inside at this point. Don't work against it as well. Sit down and rest a bit every now and again.
Hair loss. This started for me about 2 weeks after my 1st treatment. Now, for those who don't know me, I kept my hair very short as it was... 3/4" hair would be considered "hippy" for me. I'm not at all worried or concerned about losing my hair... It's just a collection of dead cells anyway (yes, the hair you see on your head and body is made up of completely dead cells). The disconcerting part for me was when I realized it was happening... I just happened to look down at my desk one day, and there lay several dozen pieces of hair.
Ever since that day, I vigorously rub my head every morning and night over my bathroom sink, to get as much out as possible. Hey, it's coming out; there is absolutely nothing you can do to stop it. Why prolong the situation? If you want to cover it up with a hat or wig... fine, whatever you want to do... BUT, why not wear your baldness with dignity? You have cancer... you are going through chemo... screw who ever gives you a sideways glance or sneer? If you see them... confront them, I guarantee they'll feel like crap after, and you'll feel vindicated.
Today, I would say I've lost about 60% of my hair. I just shaved it again last night, and based on what I shaved off vs. what I normally shave off, I think that's a pretty accurate estimate. I will tell you that I had a misconception (at least I think it's a misconception) about chemo and hair loss. I thought that eventually I would wind-up completely bald on my head. This does not appear to be the case. What seems to really happen (and I see this on me and several others I spoke with during chemo), is that there will be a period of time where you will experience hair loss... then the rate of hair loss will decrease, and you will actually start to grow hair again... then the cycle repeats, where you lose hair...
What you wind up with is varying lengths of short-ish hair... eventually every piece of hair will fall out, but you'll have new hair growing in. I think I've just decided to shave before every chemo session... that way the hair I have will be virtually the same length.
One last word on hair... the rate of growth slows... noticeably... This is especially noticeable on facial hair.
Well... that's pretty much it.
- Tired - yep getting there... I'm currently on chemo +9 days, so I'm within the 8-12 days targeted as your low point. After that, things will start to improve daily, until chemo time comes again.
- Spirits - POSITIVE. Yes, I'm lower on the energy scale, but that doesn't equal a non-positive attitude/spirit. I've only really had 2 bad days since being diagnosed... those were the day of the diagnosis, and the day after... In fact all told, I would say it was probably a 24 hour period. And even that 24 hour period wasn't all that bad.
I'm still living my normal life. I still do 90% or more of everything I was doing prior to starting this journey. In my mind, that is an extremely important fact. I am determined to have this adversely affect my life in as little ways as possible.
And to prove that this is NOT going to adversely affect my life, I take delivery on one of these next week -- brand new (though mine is a different color).
EVERYTHING tastes and smells different. Nothing really tastes or smells good for about 1.5 ~ 2 weeks after the chemo, but most things are tolerable. Because of this factor, and the fact that I lost my appetite for over a week following the first treatment, I lost 14 pounds. I have since gained about 5 of that back, despite a 2nd chemo treatment. Understand that I'm just shy of 6'1" and started out weighing 178lbs. the morning of the first treatment. I didn't really need to lose 14 pounds.
Energy level definitely goes down, but so far I'm still able to go to the gym on a somewhat regular basis. Although, I only do 20~25 minutes of vigorous cardio and some ab work. I can, however, tell that my energy level ebs and flows pretty much as described by Dr. Dan.
Following chemo (remember I have 3 weeks between treatments), my energy level isn't all that bad. My appetite is gone, and most of the energy loss I feel is related to the fact that I just don't eat much... then about 8-12 days after the chemo treatment, I can just feel the energy drain. At this point, I'm eating regularly and regular stuff... pretty much anything I want, though greasy food is just NOT appealing (I tended to shy away before, but now the idea is just not good for the tummy). Anyways... 8-12 days after chemo, the energy just drains. I'm 36 years old, and in pretty decent shape. I hate having to admit that I just can't do everything I want to do, but I'm intelligent enough to know that if I push my body, it will push back... eventually, in the end, my body will win.
If you are going through this, listen to your body. Don't push it. Your body is fighting it's own battle inside at this point. Don't work against it as well. Sit down and rest a bit every now and again.
Hair loss. This started for me about 2 weeks after my 1st treatment. Now, for those who don't know me, I kept my hair very short as it was... 3/4" hair would be considered "hippy" for me. I'm not at all worried or concerned about losing my hair... It's just a collection of dead cells anyway (yes, the hair you see on your head and body is made up of completely dead cells). The disconcerting part for me was when I realized it was happening... I just happened to look down at my desk one day, and there lay several dozen pieces of hair.
Ever since that day, I vigorously rub my head every morning and night over my bathroom sink, to get as much out as possible. Hey, it's coming out; there is absolutely nothing you can do to stop it. Why prolong the situation? If you want to cover it up with a hat or wig... fine, whatever you want to do... BUT, why not wear your baldness with dignity? You have cancer... you are going through chemo... screw who ever gives you a sideways glance or sneer? If you see them... confront them, I guarantee they'll feel like crap after, and you'll feel vindicated.
Today, I would say I've lost about 60% of my hair. I just shaved it again last night, and based on what I shaved off vs. what I normally shave off, I think that's a pretty accurate estimate. I will tell you that I had a misconception (at least I think it's a misconception) about chemo and hair loss. I thought that eventually I would wind-up completely bald on my head. This does not appear to be the case. What seems to really happen (and I see this on me and several others I spoke with during chemo), is that there will be a period of time where you will experience hair loss... then the rate of hair loss will decrease, and you will actually start to grow hair again... then the cycle repeats, where you lose hair...
What you wind up with is varying lengths of short-ish hair... eventually every piece of hair will fall out, but you'll have new hair growing in. I think I've just decided to shave before every chemo session... that way the hair I have will be virtually the same length.
One last word on hair... the rate of growth slows... noticeably... This is especially noticeable on facial hair.
Well... that's pretty much it.
- Tired - yep getting there... I'm currently on chemo +9 days, so I'm within the 8-12 days targeted as your low point. After that, things will start to improve daily, until chemo time comes again.
- Spirits - POSITIVE. Yes, I'm lower on the energy scale, but that doesn't equal a non-positive attitude/spirit. I've only really had 2 bad days since being diagnosed... those were the day of the diagnosis, and the day after... In fact all told, I would say it was probably a 24 hour period. And even that 24 hour period wasn't all that bad.
I'm still living my normal life. I still do 90% or more of everything I was doing prior to starting this journey. In my mind, that is an extremely important fact. I am determined to have this adversely affect my life in as little ways as possible.
And to prove that this is NOT going to adversely affect my life, I take delivery on one of these next week -- brand new (though mine is a different color).
Wednesday, January 7, 2009
Post 10 -- Session 1
12/26/09 -
I arrive at the facility at 8:30am to start the first session. Now during the chemo orientation, we were told the wife would be able to spend the day with me, to help while away the hours -- I'm told to expect 7~8 hours for the first session.
The first thing they present me with, is the waiver. I inform them that I have authorization... it came in at 3pm the other day. OK, no problem. I do, however, spy the dollar amount on the paperwork. $13,400.00. I ask if that is per session, or for all 6. Just the one. I used to think that my health insurance premiums were a little high, and complain about the $25 co-pay. Not any more. Not any more.
Then, we are informed that because this is a specially arranged session with limited space, she will not be able to stay. The wife does not like this, but she accepts it -- after a while. She is, however, permitted to stay while they prep me, and until the actual treatment begins.
They start you out with some Tylenol and a benadyrl drip -- helps with some of the minor pain, and to prevent some of the allergic reactions you may encounter because of the chemo.
So, off the wife goes. Shortly after she leaves, the real fun begins. The nurse comes at me carrying a large bag filled with clear liquid wearing something just short of a hazmat suit. This is not encouraging.
"Should I be concerned?"
"Well, this is the Rituximab. It is very caustic. If it gets on the skin it can burn and damage it."
"And you about to inject with with that?" (I'm not sure the dosage, but it's more than a quart.)
"It's the first of the four."
"OK. Let's go."
The first day went rather slowly. No adverse reactions, and at the end of the session, the nurse was a little surprised that my vein didn't show any signs of damage.
You see, the chemo drugs are toxic, and tend to damage what they come into contact with. Depending on the number of sessions, and combination of chemicals, the medical staff may talk to you about installing a port into your chest... This is basically a direct tap into your blood system, bypassing the veins in your arm. This can and will help lessen the damage done to your veins.
I didn't refuse the port -- in fact, I'd be OK with it, but the doctor thinks with just 6 sessions, and the fact that my veins are "good", I should be OK. The port requires outpatient surgery, and doctors are loath to do surgery if they don't have to.
I arrive at the facility at 8:30am to start the first session. Now during the chemo orientation, we were told the wife would be able to spend the day with me, to help while away the hours -- I'm told to expect 7~8 hours for the first session.
The first thing they present me with, is the waiver. I inform them that I have authorization... it came in at 3pm the other day. OK, no problem. I do, however, spy the dollar amount on the paperwork. $13,400.00. I ask if that is per session, or for all 6. Just the one. I used to think that my health insurance premiums were a little high, and complain about the $25 co-pay. Not any more. Not any more.
Then, we are informed that because this is a specially arranged session with limited space, she will not be able to stay. The wife does not like this, but she accepts it -- after a while. She is, however, permitted to stay while they prep me, and until the actual treatment begins.
They start you out with some Tylenol and a benadyrl drip -- helps with some of the minor pain, and to prevent some of the allergic reactions you may encounter because of the chemo.
So, off the wife goes. Shortly after she leaves, the real fun begins. The nurse comes at me carrying a large bag filled with clear liquid wearing something just short of a hazmat suit. This is not encouraging.
"Should I be concerned?"
"Well, this is the Rituximab. It is very caustic. If it gets on the skin it can burn and damage it."
"And you about to inject with with that?" (I'm not sure the dosage, but it's more than a quart.)
"It's the first of the four."
"OK. Let's go."
The first day went rather slowly. No adverse reactions, and at the end of the session, the nurse was a little surprised that my vein didn't show any signs of damage.
You see, the chemo drugs are toxic, and tend to damage what they come into contact with. Depending on the number of sessions, and combination of chemicals, the medical staff may talk to you about installing a port into your chest... This is basically a direct tap into your blood system, bypassing the veins in your arm. This can and will help lessen the damage done to your veins.
I didn't refuse the port -- in fact, I'd be OK with it, but the doctor thinks with just 6 sessions, and the fact that my veins are "good", I should be OK. The port requires outpatient surgery, and doctors are loath to do surgery if they don't have to.
Post 9 - Insurance Approval Tag
12/24/09 -- Yep Christmas Eve.
Receive a call from the local health system provider (mine), informing me that they haven't received authorization for my chemo yet. I inform them I'll be calling the insurance company immediately. The office close at 3pm today, so they'd need authorization by then.
Hang, and call the insurance company. I'm informed that I am 100% covered for the sessions, only they haven't received a request from the oncologist's office yet. Oh really... OK.
I hang up and call my oncologists office (remember for the PET Scan I told you not to blame the insurance company yet). You see the call that started this all came from some central patient relationship center, and not the doctor's office itself. I'm informed they can't find my file, but will call back in 5 minutes when they locate it.
They call back as promised, and inform me the file hasn't made it to the billing department yet, so no request has been made. I ask if they can process it in a little over 2 hours. Shouldn't be a problem.
You see where this is headed? I'll skip ahead some calls.
14:30 (2:30pm) -- no authorization yet, but Tina informs me she's expecting it any minute now.
14:40pm -- nope, not yet.
14:45pm -- "You have reached Cancer Care... Our offices are closed at this time for the holidays." Are you $%(#@} kidding me?!?! I decide that if I don't hear from Tina by 14:50, I'm paging the on-call doctor.
14:50 -- Tina calls, as I'm about to pick up the phone again. Still nothing. I ask what happens at 3pm? I'm told I can sign a waiver and pay if the insurance company refuses treatment (sound familiar). Now, I was told by the lady at the insurance company I spoke with earlier that I'm covered, but what if some paperwork mix-up occurs, and they refuse treatment because it wasn't pre-authorized... I'd be screwed.
I inform Tina that this is not an option, and ask who'll be staying after 3pm to wait for the call from the insurance company. You see it's not really their (insurance company's) fault, as if I wouldn't have called at 12:50 to point out the fact you (oncologist's office) never made the request to the insurance company, I wouldn't even be this far along.
(crickets... absolute silence...)
"Uh... well, yeah... we wouldn't have even requested authorization today, but the office closes at 3pm, and we all go home."
"Not the right answer. I'll stay on this line, while you use another phone to call them right now, and see what's up."
15:02 - Houston, we have authorization. Thank you Tina, and have a Merry Christmas!
Receive a call from the local health system provider (mine), informing me that they haven't received authorization for my chemo yet. I inform them I'll be calling the insurance company immediately. The office close at 3pm today, so they'd need authorization by then.
Hang, and call the insurance company. I'm informed that I am 100% covered for the sessions, only they haven't received a request from the oncologist's office yet. Oh really... OK.
I hang up and call my oncologists office (remember for the PET Scan I told you not to blame the insurance company yet). You see the call that started this all came from some central patient relationship center, and not the doctor's office itself. I'm informed they can't find my file, but will call back in 5 minutes when they locate it.
They call back as promised, and inform me the file hasn't made it to the billing department yet, so no request has been made. I ask if they can process it in a little over 2 hours. Shouldn't be a problem.
You see where this is headed? I'll skip ahead some calls.
14:30 (2:30pm) -- no authorization yet, but Tina informs me she's expecting it any minute now.
14:40pm -- nope, not yet.
14:45pm -- "You have reached Cancer Care... Our offices are closed at this time for the holidays." Are you $%(#@} kidding me?!?! I decide that if I don't hear from Tina by 14:50, I'm paging the on-call doctor.
14:50 -- Tina calls, as I'm about to pick up the phone again. Still nothing. I ask what happens at 3pm? I'm told I can sign a waiver and pay if the insurance company refuses treatment (sound familiar). Now, I was told by the lady at the insurance company I spoke with earlier that I'm covered, but what if some paperwork mix-up occurs, and they refuse treatment because it wasn't pre-authorized... I'd be screwed.
I inform Tina that this is not an option, and ask who'll be staying after 3pm to wait for the call from the insurance company. You see it's not really their (insurance company's) fault, as if I wouldn't have called at 12:50 to point out the fact you (oncologist's office) never made the request to the insurance company, I wouldn't even be this far along.
(crickets... absolute silence...)
"Uh... well, yeah... we wouldn't have even requested authorization today, but the office closes at 3pm, and we all go home."
"Not the right answer. I'll stay on this line, while you use another phone to call them right now, and see what's up."
15:02 - Houston, we have authorization. Thank you Tina, and have a Merry Christmas!
Post 8 -- Chemo Class
12/23/08 -- remember I don't know when my first session is yet.
Chemo Class is designed to answers your questions about what your body will go through and how the treatments will affect you. This is probably the biggest area of concern for anybody starting their journey.
At least for me, this is how the class went down.
My wife and I, along with 2 other couples sit in a room with a nurse, while she goes over the basics of chemo. Everything talked about is in general terms, at this point. Again, the chemo regimens differ for different cancers. Chemo itself is just a catch-all phrase that means "We are going to inject you with chemicals that will indiscriminately kill any fast growing cell in your body. Don't really care what the cell is." As a side note, this is why chemo patients lose their hair. The hair follicle is a fast growing type of cell, so the drugs attack and kill the cell.
If you don't want the details, skip this part.
So what to expect in general terms -- things that CAN occur with any chemo.
- I will be given a blood test before every session to track my blood count, and make sure I'm healthy enough to receive the treatment.
- fatigue (count on some level of this one!)
- Anemia (see above)
- appetite changes (guaranteed)
- avoid blood thinners -- aspirin, advil, motrin, etc... Tylenol = GOOD
- diarrhea -- use Imodium AD
- constipation
- hair loss
- infections -- CALL THE DOCTOR
- fevers over 100.5 -- CALL THE DOCTOR
- shaking chills
- nausea / vomiting -- if it doesn't subside, CALL THE DOCTOR
- unexplained bruising or bleeding -- your platelet count will be lower than normal
- severe headaches, change in balance -- CALL THE DOCTOR
- pain -- burning, numbness, shooting pain, stomach pain
- itchy, dry skin
- sensitivity to the sun
So, after the general class is over, the nurse takes us back to the actual chemo treatment area, to show us around and get us familiar with the area. No big deal... bunch of medical lounge type chairs in a somewhat large room. The patients are sitting in the chairs with the IVs hanging on those wheeled metal poles next to them.
When the time comes to leave the area, the nurse turns to me and says:
"Mr B., just wait right here, and we'll take your blood."
"What blood?"
"For your blood test."
"What blood test?"
"For your chemo."
"What blood test? What chemo?"
At this point the nurse turns around and asks someone else, "Didn't you tell Mr. B?"
I don't wait for a response... "Nobody told me anything. What blood test?... what chemo?"
"Your first session is December 26th."
"Oh."
"We are closed that day, so we won't have the facilities to process your blood results, but the doctor wanted to start you as soon as possible, so we've made different arrangements to have you start on the 26th. Is that OK?"
"Yeah, sure... only we haven't told anybody about this yet, including my wife's family, who are coming for Christmas, and spending the entire weekend. Guess we have to tell them Christmas evening now."
So that's how I learned that my first session would be on the day after Christmas, thanks to some special arrangments.
So after the blood test, the nurse sits with the wife and I to explain the specifics of my chemo. Pretty much expect some/most of the symptoms listed above.
Chemo Class is designed to answers your questions about what your body will go through and how the treatments will affect you. This is probably the biggest area of concern for anybody starting their journey.
At least for me, this is how the class went down.
My wife and I, along with 2 other couples sit in a room with a nurse, while she goes over the basics of chemo. Everything talked about is in general terms, at this point. Again, the chemo regimens differ for different cancers. Chemo itself is just a catch-all phrase that means "We are going to inject you with chemicals that will indiscriminately kill any fast growing cell in your body. Don't really care what the cell is." As a side note, this is why chemo patients lose their hair. The hair follicle is a fast growing type of cell, so the drugs attack and kill the cell.
If you don't want the details, skip this part.
So what to expect in general terms -- things that CAN occur with any chemo.
- I will be given a blood test before every session to track my blood count, and make sure I'm healthy enough to receive the treatment.
- fatigue (count on some level of this one!)
- Anemia (see above)
- appetite changes (guaranteed)
- avoid blood thinners -- aspirin, advil, motrin, etc... Tylenol = GOOD
- diarrhea -- use Imodium AD
- constipation
- hair loss
- infections -- CALL THE DOCTOR
- fevers over 100.5 -- CALL THE DOCTOR
- shaking chills
- nausea / vomiting -- if it doesn't subside, CALL THE DOCTOR
- unexplained bruising or bleeding -- your platelet count will be lower than normal
- severe headaches, change in balance -- CALL THE DOCTOR
- pain -- burning, numbness, shooting pain, stomach pain
- itchy, dry skin
- sensitivity to the sun
So, after the general class is over, the nurse takes us back to the actual chemo treatment area, to show us around and get us familiar with the area. No big deal... bunch of medical lounge type chairs in a somewhat large room. The patients are sitting in the chairs with the IVs hanging on those wheeled metal poles next to them.
When the time comes to leave the area, the nurse turns to me and says:
"Mr B., just wait right here, and we'll take your blood."
"What blood?"
"For your blood test."
"What blood test?"
"For your chemo."
"What blood test? What chemo?"
At this point the nurse turns around and asks someone else, "Didn't you tell Mr. B?"
I don't wait for a response... "Nobody told me anything. What blood test?... what chemo?"
"Your first session is December 26th."
"Oh."
"We are closed that day, so we won't have the facilities to process your blood results, but the doctor wanted to start you as soon as possible, so we've made different arrangements to have you start on the 26th. Is that OK?"
"Yeah, sure... only we haven't told anybody about this yet, including my wife's family, who are coming for Christmas, and spending the entire weekend. Guess we have to tell them Christmas evening now."
So that's how I learned that my first session would be on the day after Christmas, thanks to some special arrangments.
So after the blood test, the nurse sits with the wife and I to explain the specifics of my chemo. Pretty much expect some/most of the symptoms listed above.
Monday, January 5, 2009
Post 7 -- FLIPI Score
Follicular Lymphoma International Prognostic Index or FLIPI. This basically gives you your survival rate -- statistically speaking.
Your FLIPI score is based on 5 factors:
- Age greater than 60 years? If yes, add 1
- Stage III or IV disease? If yes, add 1
- Elevated serum LDH? If yes, add 1
- ECOG/Zubrod performance status of 2, 3, or 4? If yes, add 1
- More than 1 extranodal site? If yes, then add 1
Your total points will then correlate to the following table:
0-1 adverse factor, 10-year survival of 70.7%.
2 adverse factors, 10-year survival of 51%.
3-5 adverse factors, 10-year survival of 35.5%.
My score is a 3.
I will be part of the 35.5%!
If I am not part of that 35.5%, the wife informs me that I'll be in BIG trouble. :-)
Your FLIPI score is based on 5 factors:
- Age greater than 60 years? If yes, add 1
- Stage III or IV disease? If yes, add 1
- Elevated serum LDH? If yes, add 1
- ECOG/Zubrod performance status of 2, 3, or 4? If yes, add 1
- More than 1 extranodal site? If yes, then add 1
Your total points will then correlate to the following table:
0-1 adverse factor, 10-year survival of 70.7%.
2 adverse factors, 10-year survival of 51%.
3-5 adverse factors, 10-year survival of 35.5%.
My score is a 3.
I will be part of the 35.5%!
If I am not part of that 35.5%, the wife informs me that I'll be in BIG trouble. :-)
Post 6 - The Results
12/17/08
The wife and I met with Dr. Dan. Here are the results:
Stage 4b (the next stage is stage 5 -- don't make any long term plans - terminal). Now there is a HUGE LEAP from 4b to 5, but the cancer is pretty far along.
Grade 3a. The most aggressive grade (I believe I remember this part correctly) is grade 3b.
To be honest, I kinda zoned out after the stage 4b/grade 3a part of Dr. Dan's speech. I think I caught most of it, but I know I had to ask him to repeat somethings.
The cancer has reached and is in my bone marrow, but it is not in any of my organs yet. This is good news, as that would add some level of complications to things.
yada... yada... blah... blah...
The end result of all the discussions is that the cancer is pretty far along and also pretty aggressive. The MUGA scan shows that my heart is in great shape, and so we collectively opt for the more aggressive of the two chemo treatments known as R-CHOP.
I'll have 6 total treatments with 3 weeks between treatments, starting sometime near the end of December/beginning of January time frame. They'll tell me when I start my treatments when I come for my "Chemo Orientation" class on 12/23/08.
The wife and I met with Dr. Dan. Here are the results:
Stage 4b (the next stage is stage 5 -- don't make any long term plans - terminal). Now there is a HUGE LEAP from 4b to 5, but the cancer is pretty far along.
Grade 3a. The most aggressive grade (I believe I remember this part correctly) is grade 3b.
To be honest, I kinda zoned out after the stage 4b/grade 3a part of Dr. Dan's speech. I think I caught most of it, but I know I had to ask him to repeat somethings.
The cancer has reached and is in my bone marrow, but it is not in any of my organs yet. This is good news, as that would add some level of complications to things.
yada... yada... blah... blah...
The end result of all the discussions is that the cancer is pretty far along and also pretty aggressive. The MUGA scan shows that my heart is in great shape, and so we collectively opt for the more aggressive of the two chemo treatments known as R-CHOP.
I'll have 6 total treatments with 3 weeks between treatments, starting sometime near the end of December/beginning of January time frame. They'll tell me when I start my treatments when I come for my "Chemo Orientation" class on 12/23/08.
Post 5 -- PET Scan
12/5/08 - first attempt at PET Scan.
Something happened between the Doctor's office and the insurance company, but the end result was that as of 6:45am that morning, the tracer element they inject you with had reached the end of it's viability window (the tracer element is Fluorine-18; a radioactive isotope with fairly short half-life). They either needed to start the test, or abort. To start the test I would have had to sign a waiver saying that I would pay, should the insurance decline. NOPE!
12/9/08 - successful attempt at the PET Scan. Insurance company approved the test later the previous day, and I just needed to wait for a new appointment. My health system only preforms the tests on Tuesdays and Fridays.
And on a VERY COOL side note (I'm very interested in physics and specifically quantum physics), The "P" in PET scan stands for Positron. I won't go into detail about how a PET scan works, but it requires you to be injected with material that contains Anti-Matter -- the Positron is the anti-matter counterpart to the electron in the matter side of the house. The PET scan relies on the fact that when the positron encounters an electron, they annihilate each other and emit gamma radiation as a result.
Now before you go bad mouthing insurance companies... Don't... at least not this time. More on this later.
Something happened between the Doctor's office and the insurance company, but the end result was that as of 6:45am that morning, the tracer element they inject you with had reached the end of it's viability window (the tracer element is Fluorine-18; a radioactive isotope with fairly short half-life). They either needed to start the test, or abort. To start the test I would have had to sign a waiver saying that I would pay, should the insurance decline. NOPE!
12/9/08 - successful attempt at the PET Scan. Insurance company approved the test later the previous day, and I just needed to wait for a new appointment. My health system only preforms the tests on Tuesdays and Fridays.
And on a VERY COOL side note (I'm very interested in physics and specifically quantum physics), The "P" in PET scan stands for Positron. I won't go into detail about how a PET scan works, but it requires you to be injected with material that contains Anti-Matter -- the Positron is the anti-matter counterpart to the electron in the matter side of the house. The PET scan relies on the fact that when the positron encounters an electron, they annihilate each other and emit gamma radiation as a result.
Now before you go bad mouthing insurance companies... Don't... at least not this time. More on this later.
Post 4 -- CT and MUGA Scans
12/3/08 - CT Scan and MUGA Scan.
There are basically 2 chemo regimens available to me; one of which is uses some pretty aggressive drugs. Specifically, it can have some adverse affects on my heart. The MUGA scan is a heart scan. It's pretty cool in theory and provides Dr. Dan with a baseline of my heart functions, should we elect to go the more aggressive route of chemo treatment.
The CT scan is pretty much a collection of high-speed X-Ray images processed by computers to provide a slice-by-slice diagram of your body. They will inject with a contrast dye so that the portions of your body they are interested will image better.
Overall, both tests are painless. The only issue with them is they require you to lie on a table with your arms held above your head for 20-30 minutes for each test. Oh, and don't move... at all... or they will "yell" at you to not move.
Go ahead and try this at home boys and girls, see how successful you are. I wasn't all that successful. I did my best, but I did end up shifting around a little for each test.
There are basically 2 chemo regimens available to me; one of which is uses some pretty aggressive drugs. Specifically, it can have some adverse affects on my heart. The MUGA scan is a heart scan. It's pretty cool in theory and provides Dr. Dan with a baseline of my heart functions, should we elect to go the more aggressive route of chemo treatment.
The CT scan is pretty much a collection of high-speed X-Ray images processed by computers to provide a slice-by-slice diagram of your body. They will inject with a contrast dye so that the portions of your body they are interested will image better.
Overall, both tests are painless. The only issue with them is they require you to lie on a table with your arms held above your head for 20-30 minutes for each test. Oh, and don't move... at all... or they will "yell" at you to not move.
Go ahead and try this at home boys and girls, see how successful you are. I wasn't all that successful. I did my best, but I did end up shifting around a little for each test.
Post 3 -- Bone Marrow Biopsy
12/2/08 - bone marrow biopsy.
Yes, it is as bad as you think. Basically, they took a surgical steel cork screw, and screwed it into my hip, removing a core sample. They numb the area, but they can only really numb tissue and muscle... the bone, nope, not numb.
Funny story... they allowed the wife to stay in the room while they did this procedure. She "almost" passed out. I say almost, because technically she did not lose consciousness, but the medical staff all but carried her into another room, and there is a 5~10 minute period of time where she has no recollection of things, such as being carried to another room.
I, however, made it through, and even went back to work -- I had them schedule this test over the lunch period, so that I would not miss any time (or very little). I had to argue with the wife and the medical staff, but in the end, the doctor was OK with it, so long as I could deal with the pain.
My whole plan/philosophy through this whole thing is that this cancer will not have an adverse affect on me or my life. Obviously, that's not true, but where I can minimize the affects I will. I scheduled all the tests for either over the lunch period, or early morning hours (like 6am for some of them), so as to minimize the amount to time missed from work.
Now, let me say, this whole not missing work is my idea. My boss (and friend), is very supportive of me during this time, and would not say a word if I either had to take time off, or come in somewhat late.
Yes, it is as bad as you think. Basically, they took a surgical steel cork screw, and screwed it into my hip, removing a core sample. They numb the area, but they can only really numb tissue and muscle... the bone, nope, not numb.
Funny story... they allowed the wife to stay in the room while they did this procedure. She "almost" passed out. I say almost, because technically she did not lose consciousness, but the medical staff all but carried her into another room, and there is a 5~10 minute period of time where she has no recollection of things, such as being carried to another room.
I, however, made it through, and even went back to work -- I had them schedule this test over the lunch period, so that I would not miss any time (or very little). I had to argue with the wife and the medical staff, but in the end, the doctor was OK with it, so long as I could deal with the pain.
My whole plan/philosophy through this whole thing is that this cancer will not have an adverse affect on me or my life. Obviously, that's not true, but where I can minimize the affects I will. I scheduled all the tests for either over the lunch period, or early morning hours (like 6am for some of them), so as to minimize the amount to time missed from work.
Now, let me say, this whole not missing work is my idea. My boss (and friend), is very supportive of me during this time, and would not say a word if I either had to take time off, or come in somewhat late.
Post 2 -- Update/Catch-Up
OK... I warned you I wasn't the greatest at timely updates. I will try to do better.
In addition, I had questions about whether I wanted to continue this blog. I'm generally a private person -- Yes, I already had another blog, but it's relatively anonymous and generally about people other than me, and not me directly. Anyway, being a private person, I wasn't sure I wanted everyone who reads my original blog to know I had cancer. I suppose this weekend (thanks to events outside of my control), I had an epiphany... While I won't shout it from any mountain tops, I don't really care who knows.
Now the good stuff; since my first post, here is what has happened.
11/13/08 - told I have Follicular Lymphoma
11/25/08 - met with my Oncologist (Dr. Dan). Discussed things in general terms...
- what the stages are and what each means (stages are "how far along is it")
- what the grades are and what each means (grades are "how aggressive is it")
- what types of Chemotherapy are available and pros/cons for each
- what are Dr. Dan's philosophies on treatment
- what are my (and the wife's) philosophies on treatment
- what tests I would be undergoing and why
- scheduled said tests
In addition, I had questions about whether I wanted to continue this blog. I'm generally a private person -- Yes, I already had another blog, but it's relatively anonymous and generally about people other than me, and not me directly. Anyway, being a private person, I wasn't sure I wanted everyone who reads my original blog to know I had cancer. I suppose this weekend (thanks to events outside of my control), I had an epiphany... While I won't shout it from any mountain tops, I don't really care who knows.
Now the good stuff; since my first post, here is what has happened.
11/13/08 - told I have Follicular Lymphoma
11/25/08 - met with my Oncologist (Dr. Dan). Discussed things in general terms...
- what the stages are and what each means (stages are "how far along is it")
- what the grades are and what each means (grades are "how aggressive is it")
- what types of Chemotherapy are available and pros/cons for each
- what are Dr. Dan's philosophies on treatment
- what are my (and the wife's) philosophies on treatment
- what tests I would be undergoing and why
- scheduled said tests
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