I just hung up from talking to the pre-op nurse at Swedish.
That's always a bit of fun.
Oh sure, it starts out fine, but as I've said before, after I list my litany of medications and conditions the mood changes. Trust me on this, when the medical community as a whole starts sympathizing with you, you know you're screwed.
Which reminds me, last week I had lunch with one of my dearest friends. We've known each other since we were 11 years old. A few years ago I had her beat on the medical front. She was all healthy and I was broken. Ha!
Now the situations are reversed. About a year ago she found a lump that she thought was breast cancer. Turns out it wasn't. It was a melanoma. And over the next few months we watched as this 'little lump' that was going to be no big deal turned into a very big deal. The melanoma was systemic, and had metastasized. Tumors were showing regularly, and they put her on every med they could without results. Then the clinical trials started.
A few months ago they found two tumors in her brain. Before they could do anything about them, one ruptured. She suffered a pretty major stroke, then then an episode of cerebral salt-wasting syndrome. Even she didn't think she would leave the hospital. But she fought, and here she was sitting across from me at a small cafe in Tukwilla, discussing the joys of the human body. Just this week her oncologist had given her the news that there was not much more they could do for her, and that she and her family should prepare for the inevitable.
That's light lunch conversation, let me tell you.
So I do the only thing I can do for her. I try to make her laugh.
"Annie, I'll bet I know a word that you've come to hate hearing."
"What's that?"
"I'll bet you hate it when you're called an 'inspiration'."
She paused, blinked, and burst out laughing. "Oh my God!! I know!"
"Get that a lot, do you?"
She giggled again. "Oh honey . . . I hear it everyday. It's beginning to wear thin. But you with your swimming and everything, I'll bet you hear it too."
I smiled back. "Oh yeah. I hear it all the time."
"Does it bother you?" she asked.
"Yes. And I'll tel you why. Because when someone says 'Oh, you are such an inspiration!' it translates as 'Oh my God. You are so fucked. And here you are, living, doing things that I would never do, and you're sick and it kind of makes me feel shitty like I'm wasting my life and I'm so exhausted all the time and you're also beginning to make me feel guilty but I can't be mad at you because you're sick and I don't want to hurt your feelings so I'll say you inspire me. But really, it means you're fucked and I'm not.' You never hear anyone say that to someone healthy, or has all their body parts."
She paused, looked me in the eye, and burst out laughing.
"Oh my God! That's exactly what that means!"
I laughed. "I know! Bastards! I know I'm screwed. Don't remind me."
We spent the next couple of hours talking about her challenges, the future, the past, and what the hell it all means.
Unfortunately we didn't come up with any answers.
But it made me realize once again that in the grand scheme of things I have it pretty darned good. I live in an age where my health issues may not be able to be cured, but they can be controlled. I'm damned lucky.
It doesn't take much to get yourself off the pity-pot. Sometimes all you have to do is open your eyes and look at the person sitting across from you.
So bring on the implants! Let's get this show on the road so I can look at it in my rear-view mirror. Like my Dad used to say, a job well begun is half done.
Let's rock.
Tuesday, July 12, 2011
Thursday, July 7, 2011
Two weeks until treatment
I returned a few days ago from a 2600 mile, 10 day motorcycle trip down to San Francisco where I swam the "Escape from Alcatraz" event, and then we wandered up the California and Oregon coasts to home.
The swim was fantastic, and we had a great time in San Fran, but I think I found my endurance limit. 10 days, with the kind of riding we did (crossed the mountains from the I-5 corridor to the coast several times), was too much.
The effect of no testosterone is really getting to be a pain.
I kind of new that I was running on fumes a couple of days from home. But by that time there really wasn't much I could do other than soldier on.
But when I got home it hit me like a ton of bricks. When I get exhausted it throws my entire system for a loop. I feel tired, but have trouble sleeping. I feel like I run a low-grade fever. My body temperature regulation (from the hypothalamus) is . . . well, buggy. I'm either too hot or too cold. And not like, "Oh, I'm warm. Turn on the fan." More like piling on sweaters and blankets, or breaking out in a cold sweat.
So, that was how I spent my weekend and the 4th of July. Not a ton of fun, but I'm feeling much better now. Time to get on with treatment. The sooner I get this process started, the quicker I can get back on my meds and some semblance of 'normal'.
Well, as normal as it gets with a prolactinoma.
I go in a week from last Tuesday to get the seeds implanted.
That should be . . . interesting. But I'm more than ready.
The swim was fantastic, and we had a great time in San Fran, but I think I found my endurance limit. 10 days, with the kind of riding we did (crossed the mountains from the I-5 corridor to the coast several times), was too much.
The effect of no testosterone is really getting to be a pain.
I kind of new that I was running on fumes a couple of days from home. But by that time there really wasn't much I could do other than soldier on.
But when I got home it hit me like a ton of bricks. When I get exhausted it throws my entire system for a loop. I feel tired, but have trouble sleeping. I feel like I run a low-grade fever. My body temperature regulation (from the hypothalamus) is . . . well, buggy. I'm either too hot or too cold. And not like, "Oh, I'm warm. Turn on the fan." More like piling on sweaters and blankets, or breaking out in a cold sweat.
So, that was how I spent my weekend and the 4th of July. Not a ton of fun, but I'm feeling much better now. Time to get on with treatment. The sooner I get this process started, the quicker I can get back on my meds and some semblance of 'normal'.
Well, as normal as it gets with a prolactinoma.
I go in a week from last Tuesday to get the seeds implanted.
That should be . . . interesting. But I'm more than ready.
Tuesday, June 14, 2011
A Treatment Has Been Selected
What an interesting trip that was.
So I went to the Seattle Prostate Cancer Institute at Swedish on Monday.
Seems that I AM a candidate for seed implantation therapy. Contrary to what the radiology oncologist told me. Let's see, whom shall I trust? A nationally recognized treatment center, or a doctor in a small town that has invested heavily in an external beam radiation setup?
Yeah.
Brachythereapy it is! That means that on July 19th I go in for a little day surgery where they will implant 44 to 100 radioactive 'seeds' in my prostate. Doesn't that sound like fun? The next day I go back for a CT scan, and barring any complications I won't see the doc again for . . . 3 months. Then a visit at 6 months.
And that's it.
I don't want to get my hope up, but the incidence of incontinence, bladder and bower toxicity, and all the other happy things that go along with this condition are - according to the Doc - very, very low for me because of my age,general conditions, and symptoms.
No daily visits. No extended hospital stays. Nothing 'cut out'. How cool is that?
It was interesting as well because the nurse assigned to my case demanded that I get a second opinion on my pathology reports - which she is doing as we speak. None of the other Docs suggested that or even brought it up during my visits. You gotta love that.
I'll still have some of the same problems as traditional radiation. That being fatigue and nausea. Don't have to worry about the hair loss! Ha! Got ya on that one God!
It will be nice to get on with some kind of treatment. I'm REALLY starting to feel the effects of my lowered testosterone. The quicker we can start the treatment, the quicker I can start the injections again. At least we are putting this off until after my Alcatraz swim. I honestly don't know if I could swim it with the radiation and lowered testosterone.
So there you have it kids. I'll keep you updated.
So I went to the Seattle Prostate Cancer Institute at Swedish on Monday.
Seems that I AM a candidate for seed implantation therapy. Contrary to what the radiology oncologist told me. Let's see, whom shall I trust? A nationally recognized treatment center, or a doctor in a small town that has invested heavily in an external beam radiation setup?
Yeah.
Brachythereapy it is! That means that on July 19th I go in for a little day surgery where they will implant 44 to 100 radioactive 'seeds' in my prostate. Doesn't that sound like fun? The next day I go back for a CT scan, and barring any complications I won't see the doc again for . . . 3 months. Then a visit at 6 months.
And that's it.
I don't want to get my hope up, but the incidence of incontinence, bladder and bower toxicity, and all the other happy things that go along with this condition are - according to the Doc - very, very low for me because of my age,general conditions, and symptoms.
No daily visits. No extended hospital stays. Nothing 'cut out'. How cool is that?
It was interesting as well because the nurse assigned to my case demanded that I get a second opinion on my pathology reports - which she is doing as we speak. None of the other Docs suggested that or even brought it up during my visits. You gotta love that.
I'll still have some of the same problems as traditional radiation. That being fatigue and nausea. Don't have to worry about the hair loss! Ha! Got ya on that one God!
It will be nice to get on with some kind of treatment. I'm REALLY starting to feel the effects of my lowered testosterone. The quicker we can start the treatment, the quicker I can start the injections again. At least we are putting this off until after my Alcatraz swim. I honestly don't know if I could swim it with the radiation and lowered testosterone.
So there you have it kids. I'll keep you updated.
Wednesday, June 8, 2011
Fudge
So, got the word yesterday that Loma Linda, and the Proton Beam Therapy, is definitely not in my future.
That leaves me with either the seed implant therapy, or the external beam radiation therapy.
I'm not really enthused with either of them, but they are both preferable to surgery.
Who knew cancer would be such a pain? I didn't sign up for this, and I would definitely like to speak to the management. I've been calling for ages, but no one seems to answer.
So that's where I stand. It's a bit of a surreal life right now. I have my book signing tomorrow night at the Mint in Enumclaw, and I have my 'Escape from Alcatraz' swim on the 25th of this month. The yin and yang of life.
And I'm REALLY beginning to feel the effects of lowered testosterone. I'm back to the way I was a few years ago. Tired, workouts are drastically reduced, recovery time is longer, etc. Damn brain tumor.
Time to get some treatment underway so that I can get it over with. As they say, 'a job begun is half done.'
As I think I said before I'm seeing one more specialist next week, then I'll make my treatment decision.
If anyone has any advice I would love to hear it. Post in the comment section or send me email.
That leaves me with either the seed implant therapy, or the external beam radiation therapy.
I'm not really enthused with either of them, but they are both preferable to surgery.
Who knew cancer would be such a pain? I didn't sign up for this, and I would definitely like to speak to the management. I've been calling for ages, but no one seems to answer.
So that's where I stand. It's a bit of a surreal life right now. I have my book signing tomorrow night at the Mint in Enumclaw, and I have my 'Escape from Alcatraz' swim on the 25th of this month. The yin and yang of life.
And I'm REALLY beginning to feel the effects of lowered testosterone. I'm back to the way I was a few years ago. Tired, workouts are drastically reduced, recovery time is longer, etc. Damn brain tumor.
Time to get some treatment underway so that I can get it over with. As they say, 'a job begun is half done.'
As I think I said before I'm seeing one more specialist next week, then I'll make my treatment decision.
If anyone has any advice I would love to hear it. Post in the comment section or send me email.
Friday, May 27, 2011
Well, well, well . . .
I visited the Loma Linda Proton Beam center yesterday. Quite an amazing place.
Unfortunately, it looks like I may not be a 'prime' candidate for the therapy. Because of my artificial hip.
Well monkey farts.
The Dr. suggest that I go with bracheotherapy where they implant radioactive seeds in the prostate, but unfortunately the radiology oncologist said that was not an option.
Double monkey farts.
Seems this ride is going to be a little more difficult than I had hoped.
I'll keep you posted.
Unfortunately, it looks like I may not be a 'prime' candidate for the therapy. Because of my artificial hip.
Well monkey farts.
The Dr. suggest that I go with bracheotherapy where they implant radioactive seeds in the prostate, but unfortunately the radiology oncologist said that was not an option.
Double monkey farts.
Seems this ride is going to be a little more difficult than I had hoped.
I'll keep you posted.
Wednesday, May 25, 2011
Buckle up kids! The fun starts now!
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
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
Monday, May 16, 2011
All The News. All the Time.
One thing that our information age has brought us is . . . lots of information.
Now I know that sounds redundant, but think about it for a moment. If you're over the age of 35 you can probably remember a time when information wasn't nearly as accessible as it is today. If I have a question - about anything from the mating habits of the Amazonian Milk Frog, (I just looked it up. It's real.), to the 1951 Q1 US GDP. (It's $211,250,0000 by the way - that took 30 seconds on Google.)
Before the internet there were 4 sources of information for the average person. TV, Newspaper, Encyclopedia, and whomever was sitting next to you at the moment.
With this avalanche of information comes, as this should be no surprise, some contradictions. And those contradictions are never more apparent than when dealing with one's health.
Case in point: Remember when eggs were good for you? They some 'experts' came out with a new study that said eggs would kill you? And now they think they're good for you again?
I could cite examples with confirming URLs, but that seems like a lot of work. I don't have an extra 2 minutes to spare.
So, as an experiement I set up a Google News Alert for 'Prostate Cancer'.
Oh my . . .
I have several other alerts set up to deliver information to me on various topics relevant to my interests. Mainly motorcycles. Possibly some LOL Cats. Meat. And I get a few links a day delivered in my email. Sometimes not.
Now I will share with you one day's worth of alerts regarding prostate cancer.
***********************************************
Rising prostate cancer rate seen in US servicemen
WHTC
By Amy Norton NEW YORK (Reuters Health) - The rate of prostate cancer among active-duty US Air Force members has been several times higher in recent years than it was 20 years ago, a new study finds. Researchers believe that the trend is not a sign of ...
See all stories on this topic »
Protein Plays a Bad Role in Prostate Cancer
RedOrbit
(Ivanhoe Newswire) – Prostate cancer affects many men nationwide, and if caught early enough is curable, but little is understood about the mechanisms that cause a tumor to metastasize and spread to other parts of the body. ...
See all stories on this topic »
MDV3100 in New Phase II Study
Zacks.com
Medivation, Inc. (MDVN - Analyst Report) and Astellas Pharma, Inc. recently announced the initiation of a phase II study with their prostate cancer candidate, MDV3100. The study will evaluate MDV3100 as a monotherapy in hormone-naïve prostate cancer ...
See all stories on this topic »
Prostate cancer screening doesn't cut death rates
NDTV.com
A 20-years study from Sweden suggests that screening for prostate cancer does not substantially reduce the risk of death from the disease. On the other hand, a good many men might receive false-positive results and over-treatment, adding an element of ...
See all stories on this topic »
Early intervention key to surviving prostate cancer
BCLocalNews
UVic chemist Dr. Fraser Hof, front, gets funding for his research into prostate cancer in part from proceeds raised by bikers Ike de Jong, back left, Frank Scott and Graham Mitchell. By Kyle Slavin - Saanich News Certain traits run in the family. ...
See all stories on this topic »
Cancer screenings: Safe or superfluous?
Tbo.com
By MARY SHEDDEN | The Tampa Tribune As far as he knows, no one in Terry Boykin's family has had cancer. Still, in August, motivated by his wife's concern, the 42-year-old Pinellas Park man took a prostate cancer screening test. ...
See all stories on this topic »
No excuses: Get screened
Arizona Republic
Maybe you've heard about new research questioning PSA checks, blood tests that indicate prostate-cancer risk. Or about a study suggesting that many older men are getting PSA checks they don't need. And a new survey announced that 30 percent of women ...
See all stories on this topic »
************************************************************
Take a look at those last 4 headlines.
Confusing? You bet. And that's one of the problems with today's information age - we have tons of information, but really no reliable way of quantifying the quality of that information.
I'm not saying that's wrong. We need to read all the information we can and make informed choices based on that information. But when the information is contradictory, what do we do?
Now I know that sounds redundant, but think about it for a moment. If you're over the age of 35 you can probably remember a time when information wasn't nearly as accessible as it is today. If I have a question - about anything from the mating habits of the Amazonian Milk Frog, (I just looked it up. It's real.), to the 1951 Q1 US GDP. (It's $211,250,0000 by the way - that took 30 seconds on Google.)
Before the internet there were 4 sources of information for the average person. TV, Newspaper, Encyclopedia, and whomever was sitting next to you at the moment.
With this avalanche of information comes, as this should be no surprise, some contradictions. And those contradictions are never more apparent than when dealing with one's health.
Case in point: Remember when eggs were good for you? They some 'experts' came out with a new study that said eggs would kill you? And now they think they're good for you again?
I could cite examples with confirming URLs, but that seems like a lot of work. I don't have an extra 2 minutes to spare.
So, as an experiement I set up a Google News Alert for 'Prostate Cancer'.
Oh my . . .
I have several other alerts set up to deliver information to me on various topics relevant to my interests. Mainly motorcycles. Possibly some LOL Cats. Meat. And I get a few links a day delivered in my email. Sometimes not.
Now I will share with you one day's worth of alerts regarding prostate cancer.
***********************************************
Rising prostate cancer rate seen in US servicemen
WHTC
By Amy Norton NEW YORK (Reuters Health) - The rate of prostate cancer among active-duty US Air Force members has been several times higher in recent years than it was 20 years ago, a new study finds. Researchers believe that the trend is not a sign of ...
See all stories on this topic »
Protein Plays a Bad Role in Prostate Cancer
RedOrbit
(Ivanhoe Newswire) – Prostate cancer affects many men nationwide, and if caught early enough is curable, but little is understood about the mechanisms that cause a tumor to metastasize and spread to other parts of the body. ...
See all stories on this topic »
MDV3100 in New Phase II Study
Zacks.com
Medivation, Inc. (MDVN - Analyst Report) and Astellas Pharma, Inc. recently announced the initiation of a phase II study with their prostate cancer candidate, MDV3100. The study will evaluate MDV3100 as a monotherapy in hormone-naïve prostate cancer ...
See all stories on this topic »
Prostate cancer screening doesn't cut death rates
NDTV.com
A 20-years study from Sweden suggests that screening for prostate cancer does not substantially reduce the risk of death from the disease. On the other hand, a good many men might receive false-positive results and over-treatment, adding an element of ...
See all stories on this topic »
Early intervention key to surviving prostate cancer
BCLocalNews
UVic chemist Dr. Fraser Hof, front, gets funding for his research into prostate cancer in part from proceeds raised by bikers Ike de Jong, back left, Frank Scott and Graham Mitchell. By Kyle Slavin - Saanich News Certain traits run in the family. ...
See all stories on this topic »
Cancer screenings: Safe or superfluous?
Tbo.com
By MARY SHEDDEN | The Tampa Tribune As far as he knows, no one in Terry Boykin's family has had cancer. Still, in August, motivated by his wife's concern, the 42-year-old Pinellas Park man took a prostate cancer screening test. ...
See all stories on this topic »
No excuses: Get screened
Arizona Republic
Maybe you've heard about new research questioning PSA checks, blood tests that indicate prostate-cancer risk. Or about a study suggesting that many older men are getting PSA checks they don't need. And a new survey announced that 30 percent of women ...
See all stories on this topic »
************************************************************
Take a look at those last 4 headlines.
Confusing? You bet. And that's one of the problems with today's information age - we have tons of information, but really no reliable way of quantifying the quality of that information.
I'm not saying that's wrong. We need to read all the information we can and make informed choices based on that information. But when the information is contradictory, what do we do?
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