This blog is better read if you read from the bottom up -- reverse listing of posts.
Link to the first post - Post 1
Tuesday, April 21, 2009
Post 18 - Finale
OK... I suck.
I have been VERY remiss about posting, and some of you are concerned enough, and interested enough to actually email and ask...
1) Thanks for your concerns
2) Thanks for making me feel like crap for not keeping this blog up to date.
Here are the highlights.
- I am technically in re-mission. Cancer is "below detectable levels." This means that by normal means of detection - PET and CT Scans - they would be unable to see the cancer. Apparently to be picked up by these scans, there needs to be something like 1,000,000 cancer cells clumped together. While I may have several million cancer cells left in my body, they are spread out enough so that they are not detectable on scans.
- Had my final chemo treatment just last Friday - April 17. I can't wait to start to feel normal again. Heck, I can't wait to feel a "regular tired" again. Pretty much right now, I could describe any waking state that I'm in as tired/worn-out.
- Stilled signed up to run in the 5K at the end of May -- May 23rd down in Wrightsville, PA for anyone who wants to come and watch or participate.
- On May 7th, I go down to Johns Hopkins to talk to their oncologist team about a clinical trial for my follow-up treatment. The treatment is in the Radioimmunotherapy family of treatments. More to follow once I meet with them.
- On the whole... chemo was not as bad as I thought it would be... however, I don't want to minimize the experience. This is something that I would not wish on anybody. However, if you are faced with this, the only thing I can tell you is your attitude will be the biggest factor in determining how well you physically and mentally handle it. Chemo will take you places both physically and mentally that you don't want to go... Accept it, adapt, and overcome... That's all I can say.
Oh... As part of the this whole trip down to Johns Hopkins for the talk about the clinical trial, I was given all of my PET and CT scans on CD, plus all of the clinical interpretations of the scans.
I'll post another entry with some of the details, but I'll tease you now...
Some of the phrases included in the clinical write-ups:
"Aforementioned anomalies present in the brain."
"absense of the carpus callosum."
"Recommend follow-up MRI of skull area, to include a complete scan of the brain."
You see people, I'm a walking medical freak show... I already knew about this particular abnormality.
The carpus callosum is the network of nerve fibers that connect the right and left hemisphere of the brain. While I don't have a complete absence of this network, I have what is known as a hypoplasia of the white matter or carpus callosum.
Hypoplasia is a condition whereby you have (or at least I'm told I have) the correct total amount of white matter (nerve fibers), but my white matter is scrambled. I have more than the usual amount in parts, and in other parts I have none.
While they can't tell me with certainity what issues this causes me, we do know for a fact that this is the condition responsible for making me blind in one eye. The spot where my optic nerve would normally attach to the nerve fiber network, I have no white matter, so there is no physical connection to allow my optic nerve to transfer what the eye sees.
I am, however, told that I'm very lucky in the sense that the majority of people with this condition have some level of learning difficulties and/or mental retardation.
All obvious jokes aside, I thankfully do not suffer from any of these types of issues.
Again, I'll post some of the actual quotes when I have the papers in front of me.
That's all for now.
See ya later.
I have been VERY remiss about posting, and some of you are concerned enough, and interested enough to actually email and ask...
1) Thanks for your concerns
2) Thanks for making me feel like crap for not keeping this blog up to date.
Here are the highlights.
- I am technically in re-mission. Cancer is "below detectable levels." This means that by normal means of detection - PET and CT Scans - they would be unable to see the cancer. Apparently to be picked up by these scans, there needs to be something like 1,000,000 cancer cells clumped together. While I may have several million cancer cells left in my body, they are spread out enough so that they are not detectable on scans.
- Had my final chemo treatment just last Friday - April 17. I can't wait to start to feel normal again. Heck, I can't wait to feel a "regular tired" again. Pretty much right now, I could describe any waking state that I'm in as tired/worn-out.
- Stilled signed up to run in the 5K at the end of May -- May 23rd down in Wrightsville, PA for anyone who wants to come and watch or participate.
- On May 7th, I go down to Johns Hopkins to talk to their oncologist team about a clinical trial for my follow-up treatment. The treatment is in the Radioimmunotherapy family of treatments. More to follow once I meet with them.
- On the whole... chemo was not as bad as I thought it would be... however, I don't want to minimize the experience. This is something that I would not wish on anybody. However, if you are faced with this, the only thing I can tell you is your attitude will be the biggest factor in determining how well you physically and mentally handle it. Chemo will take you places both physically and mentally that you don't want to go... Accept it, adapt, and overcome... That's all I can say.
Oh... As part of the this whole trip down to Johns Hopkins for the talk about the clinical trial, I was given all of my PET and CT scans on CD, plus all of the clinical interpretations of the scans.
I'll post another entry with some of the details, but I'll tease you now...
Some of the phrases included in the clinical write-ups:
"Aforementioned anomalies present in the brain."
"absense of the carpus callosum."
"Recommend follow-up MRI of skull area, to include a complete scan of the brain."
You see people, I'm a walking medical freak show... I already knew about this particular abnormality.
The carpus callosum is the network of nerve fibers that connect the right and left hemisphere of the brain. While I don't have a complete absence of this network, I have what is known as a hypoplasia of the white matter or carpus callosum.
Hypoplasia is a condition whereby you have (or at least I'm told I have) the correct total amount of white matter (nerve fibers), but my white matter is scrambled. I have more than the usual amount in parts, and in other parts I have none.
While they can't tell me with certainity what issues this causes me, we do know for a fact that this is the condition responsible for making me blind in one eye. The spot where my optic nerve would normally attach to the nerve fiber network, I have no white matter, so there is no physical connection to allow my optic nerve to transfer what the eye sees.
I am, however, told that I'm very lucky in the sense that the majority of people with this condition have some level of learning difficulties and/or mental retardation.
All obvious jokes aside, I thankfully do not suffer from any of these types of issues.
Again, I'll post some of the actual quotes when I have the papers in front of me.
That's all for now.
See ya later.
Tuesday, March 17, 2009
Post 17 -- T-Minus One Month
One month from today (March 17, 2009) I will receive my last chemo treatment on April 17, 2009... at least this time around.
I'm pretty excited about that idea. While it's true that within that 1 month, I'll be receiving 2 more treatments, it helps to think that I only have 1 month to go.
I'm hoping the next post will be next Wednesday. I'll have the results from my PET Scan happening this coming Friday.
Stick around folks... we're almost done.
I'm pretty excited about that idea. While it's true that within that 1 month, I'll be receiving 2 more treatments, it helps to think that I only have 1 month to go.
I'm hoping the next post will be next Wednesday. I'll have the results from my PET Scan happening this coming Friday.
Stick around folks... we're almost done.
Sunday, March 1, 2009
Post 16 -- Chemo Session 4
OK... I've finished chemo #4. Nothing new... felt crappier than last time, but not unexpected.
Speaking with Dr. Dan about my maintenance therapies, I apparently have several potential options, including 2 or 3 clinical trials. We'll wait until after the 6th chemo and see what the test results show.
As for the next round of tests... I have another PET scan scheduled for March 20th. That was the scheduled day for chemo #5, but Dr. Dan wanted to give chemo #4 the full 3 weeks to work. He's hopeful that the PET scan will show the cancer to be all but completely gone. Time will tell, but I am hopeful.
As for the 5K, Dr. Dan would prefer that I not run... he's worried that I'll over exert myself training for it... Yes, to run a 5K, I will have to train... I definitely could not run one today.
So, true to my form, I printed out the registration form once I got back to the office, and will be mailing it in on Monday.
Because of the PET scan scheduled on the same day chemo #5 was to be received, that means the final two sessions will be pushed back by one week. My final chemo will now be on April 17th. This gives me 5 weeks to recover from my final treatment. I will start to run sometime probably near the end of March (before session 5), and then take a week or so after session 5 off to recover strength.
Speaking with Dr. Dan about my maintenance therapies, I apparently have several potential options, including 2 or 3 clinical trials. We'll wait until after the 6th chemo and see what the test results show.
As for the next round of tests... I have another PET scan scheduled for March 20th. That was the scheduled day for chemo #5, but Dr. Dan wanted to give chemo #4 the full 3 weeks to work. He's hopeful that the PET scan will show the cancer to be all but completely gone. Time will tell, but I am hopeful.
As for the 5K, Dr. Dan would prefer that I not run... he's worried that I'll over exert myself training for it... Yes, to run a 5K, I will have to train... I definitely could not run one today.
So, true to my form, I printed out the registration form once I got back to the office, and will be mailing it in on Monday.
Because of the PET scan scheduled on the same day chemo #5 was to be received, that means the final two sessions will be pushed back by one week. My final chemo will now be on April 17th. This gives me 5 weeks to recover from my final treatment. I will start to run sometime probably near the end of March (before session 5), and then take a week or so after session 5 off to recover strength.
Monday, February 16, 2009
Post 15 -- Another This Sucks Moment
Not sure how I missed this before, but under the symptoms/side-effects for my R-CHOP chemo treatments, it states that most people regain their full energy levels anywhere from 6 months to a year after their last treatment.
That SUCKS!
My plan/goal is to run in a 5K race on Memorial Day weekend. That's 6 weeks after my last chemo treatment... I thought I'd be back to normal or almost normal levels of energy by then.
I'm not sure I could run a 5K today... I ran 1.2 miles a couple of weeks ago, and it drained me.
However, that is still my goal, and I'll continue my daily exercise program to try and keep my stamina/energy levels up.
I resolve to run in that race... I may not beat my time from last year (secondary goal), but I'll at least finish it.
That SUCKS!
My plan/goal is to run in a 5K race on Memorial Day weekend. That's 6 weeks after my last chemo treatment... I thought I'd be back to normal or almost normal levels of energy by then.
I'm not sure I could run a 5K today... I ran 1.2 miles a couple of weeks ago, and it drained me.
However, that is still my goal, and I'll continue my daily exercise program to try and keep my stamina/energy levels up.
I resolve to run in that race... I may not beat my time from last year (secondary goal), but I'll at least finish it.
Saturday, February 14, 2009
Post 14 -- Why Me?
Don't ever... EVER ask this question.
You'll never find the answer, and it will only serve to expend time, energy and resolve you'll otherwise need to face whatever situation you are in.
I've learned long ago not to ask that question. Instead, focus on accepting your current situation and develop the resolve to adapt to and then overcome the situation.
I'm proud to admit that I've never once asked myself this question. There is no answer. Things happen... in my case (with this cancer) genetics happened. Chromosomes 14 and 18 are translocated (switched). While this didn't give me the cancer, it made me susceptible to some external environmental factor that did give me this cancer. I wish I knew what the external factor was, so I could tell others to avoid it like the plague, but I don't.
Now, don't get me wrong... I've had a couple of "this sucks" moments, but that's different. They only last long enough to complete the thought/sentence. Then I move on to "what do I need to do to beat this?" or some other positive/constructive course of action.
I dare someone to go through anything adverse and not have a couple "this sucks" moments.
I've told several people the following thought, and I honestly believe this...
Better me, than someone else.
And here are my reasons:
- I have the financial strength to deal with this -- apparently a very good insurance plan.
- I have the physical strength to deal with this -- I'm relatively young and very healthy.
- I have the emotional strength to deal with this -- this is not the first hardship I'd been dealt.
- I have the support strength to deal with this -- all of my friends and family have been and will continue to be supportive of me.
I suppose the moral of this post is to not waste your time and energy wallowing in self-pity... it never helps and more often than not is detrimental in some way.
The second moral is to choose your parents wisely... genetics can be a real bummer. I did not choose wisely. That sucks!
You'll never find the answer, and it will only serve to expend time, energy and resolve you'll otherwise need to face whatever situation you are in.
I've learned long ago not to ask that question. Instead, focus on accepting your current situation and develop the resolve to adapt to and then overcome the situation.
I'm proud to admit that I've never once asked myself this question. There is no answer. Things happen... in my case (with this cancer) genetics happened. Chromosomes 14 and 18 are translocated (switched). While this didn't give me the cancer, it made me susceptible to some external environmental factor that did give me this cancer. I wish I knew what the external factor was, so I could tell others to avoid it like the plague, but I don't.
Now, don't get me wrong... I've had a couple of "this sucks" moments, but that's different. They only last long enough to complete the thought/sentence. Then I move on to "what do I need to do to beat this?" or some other positive/constructive course of action.
I dare someone to go through anything adverse and not have a couple "this sucks" moments.
I've told several people the following thought, and I honestly believe this...
Better me, than someone else.
And here are my reasons:
- I have the financial strength to deal with this -- apparently a very good insurance plan.
- I have the physical strength to deal with this -- I'm relatively young and very healthy.
- I have the emotional strength to deal with this -- this is not the first hardship I'd been dealt.
- I have the support strength to deal with this -- all of my friends and family have been and will continue to be supportive of me.
I suppose the moral of this post is to not waste your time and energy wallowing in self-pity... it never helps and more often than not is detrimental in some way.
The second moral is to choose your parents wisely... genetics can be a real bummer. I did not choose wisely. That sucks!
Friday, February 13, 2009
Post 13 -- Test Results and Post Session #3
Sorry for keeping everyone in suspense about the test results.
Things are progressing within an acceptable range. Cancer is still there, but it's definitely getting smaller. I'm not sure what I really expected to hear from the doctor, but I came out of the visit somewhat down. Yes, the cancer is going away, but it's still there. Yes, I realize I'd only had 2 treatments, but I typically try to over-achieve in most everything I do... the fact that I'm not ahead of the typical curve just didn't sit well with me.
Don't get me wrong... I'm not down / depressed / worried... I just like to be ahead of the typical results; that's just my nature.
Came away with 2 prescriptions, and was allowed to stop a 3rd. Oh Joy!
To show you exactly how much of an over-achiever both the wife and I are, the doctor told us he feels like he's speaking with medical school students when he talks with us. We know a good deal about this cancer and I suppose ask detailed questions.
Here is a good suggestion for anybody going through any type of medical treatment that requires visiting a specialist on a regular basis...
Get a notebook, binder, or some other form of paper organizer. Have an area where you write down questions you think of between your visits. Without fail, you will think of something 2 weeks... 2 days... whatever before your next visit. Then when you are actually there, you'll forget to ask. Write the question down, and then when you are with your doctor, you can run through your list of questions. Leave spaces in between your questions to write notes... somethings are complicated or involved. This way you'll have something to reference in the future to remind yourself of everything.
OK, now for the 3rd session results.
For those about to start, or who are going through chemo currently, I will impart some of my observations. Patients will compare cancers... at least on a superficial level. Nobody is looking for the "oh, my cancer is worse than yours" kind of comparison, but just a general how you are doing, and what your treatments are... When you find someone with a similar cancer, you can and will spend long periods of time speaking with them... comparing doctors, symptoms, etc... Being a private person, I don't really do a whole lot of sharing, but I do listen to others.
You'll make (or at least I do) mental notes about other patient's progressions. You'll find yourself happy for someone who is on their last treatment, and sad for those who won't make the next. And the final observation for now... (annoying as heck)... You'll find yourself surrounded by "inspirational" poems and sayings all over the doctor's office and treatment area... It's probably just me, and I'm sure there are some who really like it... but do I really need to have the "Cancer is So Limited" poem 3 times in the same small bathroom... I'm not kidding.. 3 copies of it in the bathroom -- well 2.5 copies. One of the copies on the sink is only half the poem.
Alright - Post Chemo Session #3.
Some have asked, and the answer is yes, the side-effects of chemo are cumulative. Each time is a little worse than the time before. However, understand that you don't feel like crap the entire time between treatments. Each time lasts a little longer than the previous one, and each time is a little worse. I'm not trying to scare you if you are about to start... It's really not going to be as bad as you think it will be. Honest.
One of the side-effects you can expect to get with R-CHOP chemo therapy is a numbness in the tips of your fingers. For me this started a couple of weeks after the first session and has slowly increased over time. I don't really notice the numbness/tingly sensation until I stop and think about it, or when I type (it's surprisingly difficult for me to type for long periods of time).
This time around, too, was the first time the chemo really affected my concentration. For the first 4 days following chemo, I really had a hard time concentrating on things... I would describe it as "tunnel-focus"... like tunnel-vision, where you can only really see straight ahead. With tunnel-focus, it's almost impossible to multi-task and to switch thoughts requires some effort... not huge amounts by any means, but I'm used to being able to multi-task and quickly shift mental gears. Nothing to worry about, as it went away, but something to be aware of.
Unfortunately for me this time around, I got sick -- as in a full body cold type sick. You can't take any of the typical cold remedies or symptom suppressant medications (they'll warn you about this in chemo orientation). They don't want any medications interfering with the chemo drugs. What this means is that you just have to deal with the crap if you do get sick.
Thankfully for me, I didn't get sick right before a treatment. They test your blood and if your counts are too low (not sure how low this cold would have made them), they will not administer your treatment. I'm not sure how long it would take to reschedule for a later day, but I also don't want to find out.
I will be over this cold by the end of the weekend, and will be in good shape for the 4th treatment on February 27th.
Following that treatment, I'll have another round of tests, and more results. By that time, the cancer should be almost completely gone. The 5th and 6th rounds of chemo are to further force the cancer into remission and eradicate any linger cancer cells.
There are other posts/things I want to say, but I am tired (the body cold more than anything), and done typing.
Things are progressing within an acceptable range. Cancer is still there, but it's definitely getting smaller. I'm not sure what I really expected to hear from the doctor, but I came out of the visit somewhat down. Yes, the cancer is going away, but it's still there. Yes, I realize I'd only had 2 treatments, but I typically try to over-achieve in most everything I do... the fact that I'm not ahead of the typical curve just didn't sit well with me.
Don't get me wrong... I'm not down / depressed / worried... I just like to be ahead of the typical results; that's just my nature.
Came away with 2 prescriptions, and was allowed to stop a 3rd. Oh Joy!
To show you exactly how much of an over-achiever both the wife and I are, the doctor told us he feels like he's speaking with medical school students when he talks with us. We know a good deal about this cancer and I suppose ask detailed questions.
Here is a good suggestion for anybody going through any type of medical treatment that requires visiting a specialist on a regular basis...
Get a notebook, binder, or some other form of paper organizer. Have an area where you write down questions you think of between your visits. Without fail, you will think of something 2 weeks... 2 days... whatever before your next visit. Then when you are actually there, you'll forget to ask. Write the question down, and then when you are with your doctor, you can run through your list of questions. Leave spaces in between your questions to write notes... somethings are complicated or involved. This way you'll have something to reference in the future to remind yourself of everything.
OK, now for the 3rd session results.
For those about to start, or who are going through chemo currently, I will impart some of my observations. Patients will compare cancers... at least on a superficial level. Nobody is looking for the "oh, my cancer is worse than yours" kind of comparison, but just a general how you are doing, and what your treatments are... When you find someone with a similar cancer, you can and will spend long periods of time speaking with them... comparing doctors, symptoms, etc... Being a private person, I don't really do a whole lot of sharing, but I do listen to others.
You'll make (or at least I do) mental notes about other patient's progressions. You'll find yourself happy for someone who is on their last treatment, and sad for those who won't make the next. And the final observation for now... (annoying as heck)... You'll find yourself surrounded by "inspirational" poems and sayings all over the doctor's office and treatment area... It's probably just me, and I'm sure there are some who really like it... but do I really need to have the "Cancer is So Limited" poem 3 times in the same small bathroom... I'm not kidding.. 3 copies of it in the bathroom -- well 2.5 copies. One of the copies on the sink is only half the poem.
Alright - Post Chemo Session #3.
Some have asked, and the answer is yes, the side-effects of chemo are cumulative. Each time is a little worse than the time before. However, understand that you don't feel like crap the entire time between treatments. Each time lasts a little longer than the previous one, and each time is a little worse. I'm not trying to scare you if you are about to start... It's really not going to be as bad as you think it will be. Honest.
One of the side-effects you can expect to get with R-CHOP chemo therapy is a numbness in the tips of your fingers. For me this started a couple of weeks after the first session and has slowly increased over time. I don't really notice the numbness/tingly sensation until I stop and think about it, or when I type (it's surprisingly difficult for me to type for long periods of time).
This time around, too, was the first time the chemo really affected my concentration. For the first 4 days following chemo, I really had a hard time concentrating on things... I would describe it as "tunnel-focus"... like tunnel-vision, where you can only really see straight ahead. With tunnel-focus, it's almost impossible to multi-task and to switch thoughts requires some effort... not huge amounts by any means, but I'm used to being able to multi-task and quickly shift mental gears. Nothing to worry about, as it went away, but something to be aware of.
Unfortunately for me this time around, I got sick -- as in a full body cold type sick. You can't take any of the typical cold remedies or symptom suppressant medications (they'll warn you about this in chemo orientation). They don't want any medications interfering with the chemo drugs. What this means is that you just have to deal with the crap if you do get sick.
Thankfully for me, I didn't get sick right before a treatment. They test your blood and if your counts are too low (not sure how low this cold would have made them), they will not administer your treatment. I'm not sure how long it would take to reschedule for a later day, but I also don't want to find out.
I will be over this cold by the end of the weekend, and will be in good shape for the 4th treatment on February 27th.
Following that treatment, I'll have another round of tests, and more results. By that time, the cancer should be almost completely gone. The 5th and 6th rounds of chemo are to further force the cancer into remission and eradicate any linger cancer cells.
There are other posts/things I want to say, but I am tired (the body cold more than anything), and done typing.
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