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

7 comments:

Stephanie said...

Bill - that's fascinating! Thanks for the detailed account. I was really wondering how it worked for you, logistically. I'm really glad to hear it's painless. It's so encouraging to think that this therapy has applications for other cancers too. Keep us posted! Congrats on starting the blog. I have really gotten to enjoy blogging and I hope you do too.

Tim said...

PB,
This blog is fantastic. You can keep us all informed of your daily status without the guilt of feeling like you need to personally respond each email. That should free up up some of your day....remember, you are on "radiation vacation" and the down time is the Lord's perscription for you and Betty.
In our prayers,
Tim

Jani and Bill Barnes said...

Thought you might enjoy this.
INNOCENCE IS PRICELESS

One Sunday morning, the pastor noticed little Alex standing in the foyer of
the church staring up at a large plaque. It was covered with names and small
American flags mounted on either side of it. The six-year old had been
staring at the plaque for some time, so the pastor walked up, stood beside
the little boy, and said quietly, 'Good morning Alex.'

'Good morning Pastor,' he replied, still focused on the plaque.
'Pastor, what is this? '

The pastor said, 'Well son, it's a memorial to all the young men and women
who died in the service.'

Soberly, they just stood together, staring at the large plaque.

Finally, little Alex's voice, barely audible and trembling with fear asked,

'Which service, the 8:30 or the 10:45?'

The World is big on Vengeance, while the Gospel is only about one thing ..

GRACE

Sherri Danielson said...

Pastor Bill,
We are the family who moved to Lincoln City & we miss you guys soooooo much! I am relieved to hear (or at least it sounds like) this process is pain free. My mother had macular degeneration - how awesome that soon they will be able to reverse it. We pray for your complete recovery & we love you. God bless.
Sherri Danielson, Kelly & Hailey Morris

Unknown said...

Hey Bill! Is this what it takes for you to get a blog going? Sheesh! Anyway, we keep praying for you. Something that occurred to me to ask you with regard to the cancer. Were there symptoms you missed that you didn't know you were missing? I've always thought of you as a health-conscious person so It's kinda hard to imagine.

garlicguy said...

Thank you for the blog. We appreciate the amazing information about the treatment.

Something great will come from this...

We love and miss you.

Mark & Lumchuan Burright

Sharon Bernash Smith said...

This blog "thing" is great! Sounds like the humidity is worse than the treatment! HA! Hey, for a price, I'll go to your place and take care of the herons??? We all miss you guys so much and pray for you daily. Sharon PS Thinking about you in pilates class cracks me up, Bill