Typical Day

For everyone who was thinking about asking, here's how I spend my days...

5:00 am:  Wake up, test blood sugar (not a prostate issue), eat a small yogurt, scan headlines.
5:30 am:  Empty bladder and drink a quart of water.
5:55 am:  Drive to PTI, check in, chat with other early morning patients, and wait for treatment time.
6:30 am:  Go back to treatment area, change into a hospital gown, and nestle into the treatment "bed".
6:40 am:  The therapists adjust my position to match the mark on my hip to programmed laser pointers, take an x-ray to confirm my exact prostate location, turn on the proton beam for about two minutes, take another x-ray (occasionally), and note my appointment time and place for the next day. Lately it's been 6:30 at the Yellow gantry, and probably will remain so.
6:45 am:  Get dressed, say so long to the waiting patients, and drive back to Third & Main.
7:00 am:  Change clothes and head for the Third & Main workout room for a half hour on the treadmill (1% grade, 14 to 15 minutes/mile).
7:35 am:  Shower, eat breakfast, and catch up on the news in the Tallahassee Democrat's e-edition.

For the rest of the day, we do whatever we want. I may do some scanning of the genealogy and financial records I brought from home, or "relax" with the latest political news on TV. We may go out to see some of the attractions of the Jacksonville area, or do some grocery shopping. I always get in a second half hour on the treadmill.

Soon after supper, I prepare for the morning, setting out my quart of water and clothes for the next day. I try to be in bed by 8:00 pm. That gives me nine hours to get 7.5 hours of sleep, and I usually do (an hour-and-a-half at a time).

On Tuesdays, Wednesdays, and Thursdays, there are additional activities organized by PTI or Third and Main. More about those in another post.

By the way, I had my 26th treatment today, with 13 more coming up...I'm 2/3 of the way through!

Oh, What a Beautiful Morning

The sun was just coming up when I drove to the PTI this morning, so I had to use the headlights. The air was cool and breezy, and I was almost completely awake. My treatment was scheduled for 6:45 am, and I needed to be there half an hour before that.

Since week two I had been afraid that I'd get pushed back to a late appointment time (they go from 6:30 am to 10:00 pm). However, I'm now getting in even earlier than I was before. This makes it much less likely that I'll run into a delay that would wreak havoc with my drain-and-fill routine. I'm also now on Gantry 1 (Blue), which tends to have less delay than the other two. The Blue Gantry assignment may not last, but the early time probably will. Yay!

The treatments themselves are still going well, and I expect them to continue to do so. I'm familiar with the routine now, and the therapists who get me positioned and run the equipment are highly qualified and quite cheerful--even early in the morning. It's 13 down, and 26 to go now--hey, I'm a third of the way through!

Long Morning

My early morning treatment streak is still alive. Treatment time today was 7:50 am, and it will be again tomorrow. One of the main benefits of an early time is that there is less time for things to go wrong, hence less delay. That isn't always true, however. This morning there was a problem in the mechanism that rotates the beam apparatus in my scheduled gantry. Sounds simple, but it took the engineers much of the morning to fix it.

We kept thinking it would be working soon, and I kept draining and then refilling my bladder in preparation for the treatment. It's tricky repeating the drain-and-fill process; draining doesn't get all of the water out, so filling with another full quart is actually over-filling. By the time I got my treatment at 11:55 am, I had a more full bladder than desirable--or comfortable--but I managed to get through the treatment without an embarrassing accident.

I'm assuming everything will go more smoothly tomorrow.

Settling In

My proton beam appointment times this week have been 7:20 am. This means I wake up at 5:30, drink my 4 cups of water (to expand my bladder) at 6:20, and take the 5-minute drive to the Proton Therapy Institute. By 7:45 or so I’m finished with the treatment. Monday I also had a weekly meeting with my case manager and my doctor. Monday and Tuesday I also had the daily blood draw for the “RadTox” research study in which I’m participating. Tuesday was the last day, and the research coordinator presented me with a $60 gift card for my participation. I had already agreed to the study before I knew I’d get paid, but hey—I’ll take it.

The big question after Tuesday was: Will I continue to get early beam times, or, more likely, will I get pushed back to the end of the line and have to take very late times until I get more seniority? Well, today I had a 7:20 time again, and tomorrow will be 7:50 am. So far so good. This means I can easily leave Jacksonville tomorrow morning (PTI is closed tomorrow through Monday) and extend my Memorial Day Weekend a bit. I’ll know tomorrow morning if I come back here Monday night (for an early Tuesday beam time). Or perhaps I will wait until Tuesday morning (for a late Tuesday beam time). Either way, it’s going to be a good weekend at home. 

Early to Bed, Easy to Rise...

The long delays Thursday affected more than just the patients getting treatments. The Therapists running and scheduling the proton treatments had to do some shuffling of appointment times and gantries to get everyone back on track. One result was that my appointment for yesterday was switched to the #1 (blue) gantry and the time moved up to 7:20 am. My times had been in the 10:30 to 11:00 am range, because they want to do the research study blood draws in the mornings.

The early morning times, 6:30 to 8:30 am, are highly prized. Typically there are fewer delays, but more importantly it means a patient has most of the rest of the day to do other things in Jacksonville and the surrounding area. On Fridays an earlier appointment makes it easier to drive or fly home, or to make other long-distance plans. Because the early times are desirable, they're usually reserved for those with special needs, or who have seniority. After only a week at PTI, I don't have any seniority at all, so after my last blood draw for the research study on Tuesday, I expect to start getting much later times. The latest appointments are usually 10:30 pm, but with delays the actual time can be much later. I'm an early riser, and I'd rather get up before dawn than stay up that late...but I'll do whatever is necessary.

Yesterday I took advantage of the early appointment to leave for Tallahassee later in the morning. It's good to be home, even if just for a couple of days.

Today I reviewed my previous blog entries, and realized I hadn't published one that I drafted on January 24. It's titled "Decisions, Decisions" and has details about several of my treatment options and plans. If something I've posted since then seems incomplete, it may be covered in that earlier post, which is now up and still dated January 24.

Timing Is Everything

The Proton Therapy Institute treats about 100 people per day. The cyclotron produces a steady stream of protons that are divided sequentially among the three gantries. The Therapists in each gantry are positioning their patients while the beam is being sent to the other gantries. It all works like clockwork…except when it doesn’t. A patient may show up a little late, or it may take longer than expected to do the positioning, or a particular patient may require a longer or shorter treatment, or any one of many other problems could crop up. The therapists expect (on the average) a certain amount of unplanned delay, which they build into the projected appointment times that they assign to each patient on the previous day. Knowing that stuff happens, they keep track of the time lag or lead for each gantry. That info is shown in real time on a monitor in the waiting room, and posted on their web site. I routinely check my iPhone to see how my appointment time that day is affected. I’ve see gantries up to 30 minutes early or up to 45 minutes late. Typically, one gantry is 5 minutes early, one is 10 minutes late, and one is 15 minutes late.

Today my treatment appointment was for 11:00, but I saw on the web site while eating breakfast that all three gantries were an hour behind. An hour later, all were two hours behind. This was pushing my beam time into conflict with a 1:30 appointment to get my second (and last!) ADT injection. I managed to reschedule the injection to 9:30, and while nearby I dropped into the PTI building to do the daily blood draw for the research project. I still had plenty of time before the adjusted appointment time for my treatment, so I went back to Third and Main for lunch.

After the delay passed three hours, I got a call from one of the Therapists: Turns out the cyclotron techs were having trouble getting the proton beam right. Soon thereafter I got another call: things were straightened out, but the delay was so long they decided it was getting confusing…so they moved some appointments around, reset the gantry time adjustments to zero, and gave everyone new (and later) appointment times. My new beam time: 2:30. There still were some adjustments to the gantry schedule, both up and down, but I finally got into the treatment room, and got out again before 3:00.

As it was yesterday, the actual treatment was relatively fast and easy. Not quite as comfortable, as I was eager to get to the bathroom as soon as possible afterwards. I’m trying to fine-tune the timing for when I drink liquids in the hours before I empty my bladder and then drink the 4 cups of water--which has to be done 60 minutes before I expect the treatment to actually occur. Latest lesson: don’t have a big helping of watermelon for lunch less than two hours before downing the 4 cups.

Day 2: Smooth Sailing and Plenty of Food

Two down and 37 to go. Today was easier, faster, and more comfortable. After I positioned myself in the pod, the therapists checked the positioning (of me and the equipment), and determined that it was all ready to go. My gantry (#3, aka Yellow) was first in line for the next available beam. The cyclotron produces only one beam of protons, which is switched back and forth between the three gantries, so often it's necessary to wait a few minutes after everything else is ready--but not this time.

A little after the treatment, it was time for the Lunch Bunch. This is a free lunch hosted at PTI every Wednesday for PTI patients, their caregivers, and any medical or technical staff personnel who are not busy doing something else. The food is not memorable, but each lunch is accompanied by a presentation by a PTI person on some aspect of their work. Today was a talk by some researchers about the various kinds of research conducted at PTI--why, how, by whom, etc.  We also heard a few words from several alumni (patients who were back for follow-up checks), and graduates (patients who were just finishing their treatments). All of them were very grateful for the care they had received at PTI. Finally, newbies just starting treatments were invited to speak...I said how much I appreciated not just the technical skills of the doctors, nurses, and other staff, but also how friendly, helpful, and downright cheerful everyone was. It really is an excellent environment.

Later in the day, Third and Main hosted a pot-luck Luau. They provided pulled pork, mac-n-cheese, beans, drinks, plates, and cutlery, and patients and caregivers were invited (but not required) to bring a dish. There was an abundance of fried chicken and desserts, including some of Ursula's famous pecan muffins. It was a good chance to get to know other Third and Main folks.