Whatever else one might say about Jacksonville in the summer, all would agree it's hot. It rarely goes below 72 any time of night or day, and is usually into the 90s day after day. This is accompained, of course, by the humidity. The only variable is whether the clouds will come and we will have thunder, lightning, and a torrential downpour. Coming from the great PNW, we are certainly used to rain. But this is something else - fat rain, chubby rain, giant drops pelting you as you try to make it from your car to the house. They are now saying a huge storm is coming down from Georgia, so we may have to change our Okefanokee plans for tomorrow. We'll see.
My appointment for tonight at 7:30 has already been moved up to 4:25. Hopefully as the day progresses, another earlier slot will open up. Whatever. I'm just glad to be getting the treatments, whatever time of day or night. One reason for wanting them earlier is the fact that the storms usually come late afternoon and have been known to knock the power out. Given the demand of the cyclatron, that is not a good thing, and you may have to skip your appt for that day and do a make up, adding a day to your program. So...we push for earlier.
We went to "Fit Stretch" at the YMCA this morning after a brisk walk through the neighborhood. We were already sweating when we got to class. Then "Betty," the 78 yr old instructor, started leading our class. Ha! She's a 25 yr old posing as a 78 yr old...I just know it. She bends where a person is not supposed to be able to bend, and pushes everybody in the class to places they would never go on their own. She's actually a delightful lady, and I'm sure we'll be taking more of her classes.
On to the rest of the day...
May yours be blessed!
Bill
Friday, July 11, 2008
Thursday, July 10, 2008
It's about time...
It's Thursday, July 10, and I'm writing this from my rental home in Jacksonville, Florida. I'm currently almost 1/4 of the way through Proton Therapy for prostate cancer which was diagnosed on April 14. Before I left home to come to JAX, a number of people encouraged me to do a blog. I know blogs can take time that people don't have to give, and I don't want to be the source of stealing time. But when I found myself trying to respond to numerous emails and similar kindly queries daily, I decided it would be easier to communicate "common information" by means of a blog than anything else. So, welcome to my world.
Today I finished my 10th of 41 treatments. It is truly a "Star Wars" experience. I don't know how else to characterize laying in a form-fitted pod on a robotic bed that daily rotates me 180 degrees and moves me into a 14' cylinder where I find myself suspended 7' off the ground. As I then lay their clutching a little rubberized ring to my chest trying to remain motionless, C3Po-like x-ray machines move out beside me and underneath or on top of me to determine the exact position of my prostate as they triangulate the gold markers implanted weeks ago. All this in order to make certain the prostate is exactly in the cross-hairs of the proton beam. Once everything is exact (they have only a 2mm tolerance for deviation), the bell is rung, the therapists leave the room, all the fail-safe procedures are followed, the doctor gives the order, and ultimately the people in charge of sending in the beam do their work. All you hear is the machine winding up to the exact level it needs to be for you personally, different for every patient. You don't see, hear, or usually feel anything. Interestingly enough, though most of the guys say they never feel anything, several times I am certain I have felt something like a magnetic vibration, but it's very faint, and no big deal. Then, when the beam finally comes into the gantry and does its work (may take several minutes before it arrives, but only about 90 seconds to do its work), you're good to go. That is, after you remain motionless while your x-ray friends re-emerge out of the wall of the gantry and do more x-rays to make certain nothing moved. The bed is swung around again, you step off onto the stairs to get down, and you're ready to change your clothes and go about your day. The only thing you have to show for this is a "proton tan," which doesn't start to emerge for a number of treatments. It's like an extremely faint sunburn at first at the exact place on each side (top of the pelvic area) where the beam enters. Slowly it becomes more and more noticeable. I'll have to tell you later what all that means because it's far from that for me yet.
Since I'm still a relative "newbie," I don't have a set schedule. I would suspect after next week, I'll be able to get a specific time of day, and I want that to be early (they start at 6:30am). As it is, I have a different time every day, so it makes it difficult to plan much. Lately my appointments have been anywhere from 2-4pm. Today's was to be at 3:20, but they called me early because they got ahead so could work in an extra patient, so I got in at 10 (missed Pilates at the YMCA which Betty enjoyed alone!). Tomorrow I'm scheduled at 7:30 pm (they go until 9:30), but they told me they'd try to get me in early again. Tonight there is a no-host fellowship dinner at a local Italian restaurant which we plan to go to. They do a lunch at some local place each Tuesday, a freebie meeting/lunch each Wednesday at the center, and the dinner on Thursdays. They have a wives and/or caregivers meeting on Wednesdays (Betty chose to do Pilates instead - LOL), and generally speaking, stuff to keep you occupied. At yesterday's meeting, one of the staff filled us in more on details about Florida Proton. Currently they are taking in more and more people with pancreatic cancer, assuming it hasn't yet metastisized. They want to be doing breast tumors, but that presents a challenge because they would have to hit a moving target (the chest obviously moves up and down as the patient breathes). In order to do this, they are working on a gaiting device that will turn on the beam when the tumor is in the crosshairs, and turn it off when it move out, back on when on target, back off when out. That will be truly miraculous. When they open the gantry designed only for eyes (in a few months), they will be able to stop and/or reverse Macular degeneration with one treatment. Isn't that amazing?
Hopefully this gets you up to speed on where we are and what we're doing. We're fine, making the most of our "radiation vacation." We hope to tour the Okefanokee Swamp on Saturday, boating down the Suwanee Canal, and perhaps spend a bit of time on Cumberland Island, both in Georgia. That's only about 45 minutes from here.
May the Lord bless you mightily!
Bill
Today I finished my 10th of 41 treatments. It is truly a "Star Wars" experience. I don't know how else to characterize laying in a form-fitted pod on a robotic bed that daily rotates me 180 degrees and moves me into a 14' cylinder where I find myself suspended 7' off the ground. As I then lay their clutching a little rubberized ring to my chest trying to remain motionless, C3Po-like x-ray machines move out beside me and underneath or on top of me to determine the exact position of my prostate as they triangulate the gold markers implanted weeks ago. All this in order to make certain the prostate is exactly in the cross-hairs of the proton beam. Once everything is exact (they have only a 2mm tolerance for deviation), the bell is rung, the therapists leave the room, all the fail-safe procedures are followed, the doctor gives the order, and ultimately the people in charge of sending in the beam do their work. All you hear is the machine winding up to the exact level it needs to be for you personally, different for every patient. You don't see, hear, or usually feel anything. Interestingly enough, though most of the guys say they never feel anything, several times I am certain I have felt something like a magnetic vibration, but it's very faint, and no big deal. Then, when the beam finally comes into the gantry and does its work (may take several minutes before it arrives, but only about 90 seconds to do its work), you're good to go. That is, after you remain motionless while your x-ray friends re-emerge out of the wall of the gantry and do more x-rays to make certain nothing moved. The bed is swung around again, you step off onto the stairs to get down, and you're ready to change your clothes and go about your day. The only thing you have to show for this is a "proton tan," which doesn't start to emerge for a number of treatments. It's like an extremely faint sunburn at first at the exact place on each side (top of the pelvic area) where the beam enters. Slowly it becomes more and more noticeable. I'll have to tell you later what all that means because it's far from that for me yet.
Since I'm still a relative "newbie," I don't have a set schedule. I would suspect after next week, I'll be able to get a specific time of day, and I want that to be early (they start at 6:30am). As it is, I have a different time every day, so it makes it difficult to plan much. Lately my appointments have been anywhere from 2-4pm. Today's was to be at 3:20, but they called me early because they got ahead so could work in an extra patient, so I got in at 10 (missed Pilates at the YMCA which Betty enjoyed alone!). Tomorrow I'm scheduled at 7:30 pm (they go until 9:30), but they told me they'd try to get me in early again. Tonight there is a no-host fellowship dinner at a local Italian restaurant which we plan to go to. They do a lunch at some local place each Tuesday, a freebie meeting/lunch each Wednesday at the center, and the dinner on Thursdays. They have a wives and/or caregivers meeting on Wednesdays (Betty chose to do Pilates instead - LOL), and generally speaking, stuff to keep you occupied. At yesterday's meeting, one of the staff filled us in more on details about Florida Proton. Currently they are taking in more and more people with pancreatic cancer, assuming it hasn't yet metastisized. They want to be doing breast tumors, but that presents a challenge because they would have to hit a moving target (the chest obviously moves up and down as the patient breathes). In order to do this, they are working on a gaiting device that will turn on the beam when the tumor is in the crosshairs, and turn it off when it move out, back on when on target, back off when out. That will be truly miraculous. When they open the gantry designed only for eyes (in a few months), they will be able to stop and/or reverse Macular degeneration with one treatment. Isn't that amazing?
Hopefully this gets you up to speed on where we are and what we're doing. We're fine, making the most of our "radiation vacation." We hope to tour the Okefanokee Swamp on Saturday, boating down the Suwanee Canal, and perhaps spend a bit of time on Cumberland Island, both in Georgia. That's only about 45 minutes from here.
May the Lord bless you mightily!
Bill
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