Wow, what an interesting couple of weeks.
First, I turned 50 on Sunday. Yes, I do accept PayPal for gifts. :)
In my family, that's kind of a milestone. Both my older sister, and my mother died at the age of 47 from cancer. Not that I'm terribly concerned about that, but it does play around in my brain from time to time.
And tomorrow I leave for my consultation appointment with the Proton Beam medical team. I'm not expecting anything out of the ordinary, but with cancer . . . you never know. Cancer is a sneaky little bugger.
We'll find out if the artificial hip is going to be a problem. As I've said, early correspondence with the Docs indicate that this is something they can work with. Also, I'll be checking out the area for housing, proximity to the Loma Linda Medical Center, and all the other fun stuff that comes with the possibility of an extended stay.
I think I've said before that if possible I'm going to push my treatment until after Labor Day. Logistically this would make more sense for me. It would give us a little more time to get our stuff in order, and would certainly help with the issues of leaving the house in the middle of the growing season. I have about an acre of land that I maintain - lawns, flowerbeds, etc. - and it requires almost constant attention. At least after Labor Day things have gone dormant or significantly slowed in their growth.
Plus, on a personal level, I did not live through two winters and a crappy summer last year to abandon the warm months to come. It seems like a waste to go to So. Cal. when the weather here is nice. That's like giving up your ice cream so you can have a banana split. I say eat your ice cream, wait a couple of hours, then eat the banana split.
We have the possibility for a good riding season coming up, and I don't want to miss it. Riding in the summer in the Pacific NW is heaven. The snow melts, the mountain passes open, and everything bursts with life. It's glorious.
Damn cancer always ruining my plans. Had I know it would be this much of a pain, I wouldn't have signed on to the program in the first place.
Anyway, I'll keep you posted. :)
David
Showing posts with label Loma Linda University. Show all posts
Showing posts with label Loma Linda University. Show all posts
Wednesday, May 25, 2011
Monday, May 9, 2011
Setting The Course For Treatment
Wow. What a week this has been.
The book is starting to take off (Yeah!). People are also starting to ask me for autographs and to sign the book. That is just about the weirdest thing in the world. It make me feel . . . like a big 'ol steaming pile of fake.
But, during all the chaos, I've decided on a course of treatment that I'm going to pursue.
I'm going for the Proton Beam therapy at Loma Linda University.
It's not a sure thing. We've got the insurance coverage worked out - mostly - but there may be a problem with my artificial hip. Seems that if the cancer is in the wrong place they can't shoot the beam correctly and it will bounce off the prosthetic hip. From my understanding of particle physics this would be . . . bad. I won't know until they do a full CT scan.
Yet everyone tells me that I have, "The good kind of cancer."
Really? I thought the 'good kind of cancer' was no frickin' cancer at all, but what do I know. I'm just the patient.
So, towards the end of the month I'll be going down for a couple of days. They'll do the CT on the first day, and the second day more 'pics' and then they will map out (literally) a treatment plan. We won't know if the hip is going to be a problem until probably 2 to 3 weeks after the consultation.
And even then, there are the logistics of a 8 to 9 week stay to figure out. Do we rent an apartment? Extended stay hotel? Buy a cheap RV? With the price of gas you can pick them up for pennies on the dollar. Although, all I can see is me in a big floppy hat, cigar in my mouth, in my bathrobe, emptying my solid waste into a sewer drain while Chevy Chase looks on at me with disdain.
Much of this depends on when - and if - the treatment can start. I've heard that there is up to a 4 month waiting list to get into the program. Which, for Suzanne and me, would be a good thing.
That way we still get our riding season.
Plus, there is that pesky NW lawn that needs cutting twice a week this time of year, the weed eating, etc.
All minor inconveniences in the grand scheme of things. I am so lucky to have choices.
Now if this damn NW weather would turn around and warm up all would be right with the world.
Mostly.
Now I'm off to do another video promo for the book. I don't want to spoil the surprise but there may be sock puppets involved. Stay tuned. :)
The book is starting to take off (Yeah!). People are also starting to ask me for autographs and to sign the book. That is just about the weirdest thing in the world. It make me feel . . . like a big 'ol steaming pile of fake.
But, during all the chaos, I've decided on a course of treatment that I'm going to pursue.
I'm going for the Proton Beam therapy at Loma Linda University.
It's not a sure thing. We've got the insurance coverage worked out - mostly - but there may be a problem with my artificial hip. Seems that if the cancer is in the wrong place they can't shoot the beam correctly and it will bounce off the prosthetic hip. From my understanding of particle physics this would be . . . bad. I won't know until they do a full CT scan.
Yet everyone tells me that I have, "The good kind of cancer."
Really? I thought the 'good kind of cancer' was no frickin' cancer at all, but what do I know. I'm just the patient.
So, towards the end of the month I'll be going down for a couple of days. They'll do the CT on the first day, and the second day more 'pics' and then they will map out (literally) a treatment plan. We won't know if the hip is going to be a problem until probably 2 to 3 weeks after the consultation.
And even then, there are the logistics of a 8 to 9 week stay to figure out. Do we rent an apartment? Extended stay hotel? Buy a cheap RV? With the price of gas you can pick them up for pennies on the dollar. Although, all I can see is me in a big floppy hat, cigar in my mouth, in my bathrobe, emptying my solid waste into a sewer drain while Chevy Chase looks on at me with disdain.
Much of this depends on when - and if - the treatment can start. I've heard that there is up to a 4 month waiting list to get into the program. Which, for Suzanne and me, would be a good thing.
That way we still get our riding season.
Plus, there is that pesky NW lawn that needs cutting twice a week this time of year, the weed eating, etc.
All minor inconveniences in the grand scheme of things. I am so lucky to have choices.
Now if this damn NW weather would turn around and warm up all would be right with the world.
Mostly.
Now I'm off to do another video promo for the book. I don't want to spoil the surprise but there may be sock puppets involved. Stay tuned. :)
Wednesday, April 27, 2011
My Radiological Oncologist And A Possible New Therapy
I met with a Radiological Oncologist on Friday.
Which was . . . about as much fun as meeting with a Radiological Oncologist.
My first impression as I walked into the building was, "Whoa! That's a strong smell of (medical) marijuana floating around the entrance." Which, for some reason, made my cancer seem very, very real.
It's strange being young, (well - relatively young), with a disease that primarily effects older men. I was the baby in the waiting room. The other men in there were in their 70s and 80s, and not looking in the best of health. Hey, they have cancer. We can't all be beautiful.
The consultation with the oncologist was rather routine, although he was highly impressed with my upcoming swim in San Fransisco in the latter part of June. Here's what I'm swimming:
Escape from Alcatraz - Sharkfest 2011
He remarked a few times about how long, and how hard I've been training for this event and what a shame it would be to miss it. This made me feel a tad guilty. I swim a lot - but I don't really 'train', if you know what I mean. I just swim. It's the only way that I can keep semi-mobile. Open water swims are a side-note; something to do on the weekends with my buddies from the pool.
He then went on to explain why radiation was better than surgery, what to expect, etc. Nothing too surprising there. Cure rates between surgery and radiation are about the same. Risk of serious side effects almost the same - a 50-50 chance, yada yada yada. Although with surgery you know immediately how screwed you are, but with radiation it sometimes takes months - or years - for the damage to show.
If I were to choose radiation therapy I would have daily treatments for 8 to 9 weeks.
I was going to post a graph of the various side effects and risks for each of the therapies but I found it depressing. You can look it up if you're that interested.
Yay.
As I'm sure you'll agree these are both, what we professionals refer to as "suck ass" therapies.
But as I'm learning, you can't really complain about the effects. Why? Because people will yell at you and tell you to be thankful that 'you're alive'.
There is an interesting gender phenomena regarding that statement above, but more on that later.
There is another therapy available. Although neither my urologist nor radiological oncologist suggested this form of treatment.
Why? Well, let's see; the urologist specializes in radical prostatectomy. He has a robotic surgery suite that he paid hundreds of thousands of dollars for, and it's what he studied in school. The radiologist has an advanced machine that he's paid hundreds of thousands of dollars for, and it is what he studied in school.
Never forget that cancer is big business.
Proton Beam Therapy has the same cure rate as surgery or radiation. It has a lower recurrence rate. But the cool thing is, proton beam has very, very few side effects when compared to surgery or external radiation. Not completely gone, but so much less it's not even funny.
Say wha?????
Unfortunately, there are only 9 Proton Beam Therapy Centers in the US at this time. Seattle is building one, (Seattle Cancer Care Alliance), but it won't be open until 2013. I just can't wait that long. I suppose it's not easy to construct a cyclotron. The nearest center for me is Loma Linda University. It's where they developed the therapy 20 years ago. Plus, the therapy is EXPENSIVE. And, even if insurance will pay a portion of the cost, I would have to figure out how to relocate to California for 8 to 9 weeks with all of the housing/food costs that would occur.
I need to win the lotto. Or sell like 7000 bracelets.
But still, to come out with a good chance of no lasting side effects? Seems like a no-brainier to me. Here's a good article from CBS News talking about Proton Beam Therapy:
CBS News Proton Beam Therapy
So I'm in the process of gathering medical records, talking to insurance, etc. Even if I clear those hurdles I might not be eligible because of my hip replacement. We shall see.
It's hard to not get really excited. But I wan't to be realistic.
So that's where I am today. I'll keep you posted.
If anyone reading this has any experience with any of the therapies I would request that you share. Comments are always welcome.
Which was . . . about as much fun as meeting with a Radiological Oncologist.
My first impression as I walked into the building was, "Whoa! That's a strong smell of (medical) marijuana floating around the entrance." Which, for some reason, made my cancer seem very, very real.
It's strange being young, (well - relatively young), with a disease that primarily effects older men. I was the baby in the waiting room. The other men in there were in their 70s and 80s, and not looking in the best of health. Hey, they have cancer. We can't all be beautiful.
The consultation with the oncologist was rather routine, although he was highly impressed with my upcoming swim in San Fransisco in the latter part of June. Here's what I'm swimming:
Escape from Alcatraz - Sharkfest 2011
He remarked a few times about how long, and how hard I've been training for this event and what a shame it would be to miss it. This made me feel a tad guilty. I swim a lot - but I don't really 'train', if you know what I mean. I just swim. It's the only way that I can keep semi-mobile. Open water swims are a side-note; something to do on the weekends with my buddies from the pool.
He then went on to explain why radiation was better than surgery, what to expect, etc. Nothing too surprising there. Cure rates between surgery and radiation are about the same. Risk of serious side effects almost the same - a 50-50 chance, yada yada yada. Although with surgery you know immediately how screwed you are, but with radiation it sometimes takes months - or years - for the damage to show.
If I were to choose radiation therapy I would have daily treatments for 8 to 9 weeks.
I was going to post a graph of the various side effects and risks for each of the therapies but I found it depressing. You can look it up if you're that interested.
Yay.
As I'm sure you'll agree these are both, what we professionals refer to as "suck ass" therapies.
But as I'm learning, you can't really complain about the effects. Why? Because people will yell at you and tell you to be thankful that 'you're alive'.
There is an interesting gender phenomena regarding that statement above, but more on that later.
There is another therapy available. Although neither my urologist nor radiological oncologist suggested this form of treatment.
Why? Well, let's see; the urologist specializes in radical prostatectomy. He has a robotic surgery suite that he paid hundreds of thousands of dollars for, and it's what he studied in school. The radiologist has an advanced machine that he's paid hundreds of thousands of dollars for, and it is what he studied in school.
Never forget that cancer is big business.
Proton Beam Therapy has the same cure rate as surgery or radiation. It has a lower recurrence rate. But the cool thing is, proton beam has very, very few side effects when compared to surgery or external radiation. Not completely gone, but so much less it's not even funny.
Say wha?????
Unfortunately, there are only 9 Proton Beam Therapy Centers in the US at this time. Seattle is building one, (Seattle Cancer Care Alliance), but it won't be open until 2013. I just can't wait that long. I suppose it's not easy to construct a cyclotron. The nearest center for me is Loma Linda University. It's where they developed the therapy 20 years ago. Plus, the therapy is EXPENSIVE. And, even if insurance will pay a portion of the cost, I would have to figure out how to relocate to California for 8 to 9 weeks with all of the housing/food costs that would occur.
I need to win the lotto. Or sell like 7000 bracelets.
But still, to come out with a good chance of no lasting side effects? Seems like a no-brainier to me. Here's a good article from CBS News talking about Proton Beam Therapy:
CBS News Proton Beam Therapy
So I'm in the process of gathering medical records, talking to insurance, etc. Even if I clear those hurdles I might not be eligible because of my hip replacement. We shall see.
It's hard to not get really excited. But I wan't to be realistic.
So that's where I am today. I'll keep you posted.
If anyone reading this has any experience with any of the therapies I would request that you share. Comments are always welcome.
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