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.

1 Down, 38 to Go

Finally, I got my first proton beam treatment today. I met with my nurse/case manager (for her assessment of my condition and readiness to start), and met with my doctor (mostly to see if I had any questions for him.) These meetings will be once a week for the rest of my treatment. Also today, a nurse took some blood for my participation in a couple of research studies. She will take the samples before each of the first six treatments.

During the simulation day, two weeks ago, they determined that to get my bladder full enough to keep it the maximum distance from the proton beam I would need to drink four 8-ounce cups of water an hour before each treatment. I drank them at about 10:40, and was summoned to the treatment area about 11:45. It took about 10 minutes for me to change to an open-in-the back gown and settle into my prefabricated pod/bed on the treatment table. Then the Therapists (the two young ladies managing everything in the treatment room) took another 10 or 15 minutes to get me properly positioned and get everything lined up. During all my time in the pod I was holding as still as possible. The actual beam time was less than a minute or two. I can’t be sure, because I felt absolutely nothing while it was on.

As the Therapists helped me off the table, they asked if I had any questions. Of course, my first question was “Where is the nearest bathroom?” Naturally, there was one quite close by. The Therapists noted that subsequent treatments would be quicker because less set-up time would be needed.

After I got dressed they gave me a card with my next appointment time: 10:20 am. This means I arrive at 9:10 so I can provide the blood for the research study and drink the quart of water. It’s an advantage to be in the study because they like to do the blood draw mid-morning. After the first six days, my appointment time may be anywhere from 6:30 am to 10:30 pm. Patients with seniority get more of a choice of times, but newbies like me tend to get late-night appointments. At least that will get me more of an uninterrupted day.

The End of the Beginning

Ursula and I were in Jacksonville this week for the last part of the preparation for my proton beam treatment.

Monday, we got to Jacksonville in time for a tour of the proton beam facility. After a brief lecture about how it works, we visited one of the treatment areas. This area is also known as a gantry, because of the large superstructure that rotates around the patient. The proton beam comes from a cyclotron, is reduced in energy as needed for each patient, and is directed to the beam-delivery "snout" in one of the three gantries. There the beam goes through a collimator, a large and heavy brass disk into which is carved the exact shape of the patient’s prostate (or whatever location is being treated). The brass collimator is set into a carved Plexiglas disk to further modulate the shape of the proton beam to match the desired 3-dimensional treatment area.

Tuesday at 8 am, I cleared out my lower intestine with the help of the Fleet company. A couple of hours later, the SpaceOAR nurse specialist reviewed my records and forms. She gave me an antibiotic injection, Valium, and hydrocodone, and took me to the treatment room. There my doctor cleaned and numbed the anal / perineal area. With the aid of a rectal ultrasound system he went through the perineum to place three gold markers (fiducials) on my prostate. Then, again with the aid of the ultrasound, he determined the exact place between the prostate and the lower intestine to inject the twin components of the SpaceOAR. The two components reacted with each other (much like epoxy components combine, but with different results!) to form a foam that then expanded and turned into the semi-solid SpaceOAR. The SpaceOAR will remain in place for several months, and then be absorbed into the body. While in place it will provide Space between the prostate and other Organs At Risk, primarily the lower intestine. I spent the rest of the day back at our apartment at Third and Main, where I avoided sitting down–especially on hard surfaces. I had additional Valium and hydrocodone available if I needed it, but I didn’t. I had some soreness, but the main symptom was a feeling of fullness in the area because of additional pressure exerted by the SpaceOAR on my bladder and lower intestine. My mind interpreted the pressure as a need to both urinate and defecate, whether there was really a need or not. I slept poorly that night, as my mind and body continually disagreed about what I should do. My body is supposed to adapt to this situation within a few days, at most.

Wednesday, I reported to PTI at 7:30 am, and started the process to bring my bladder to a large and reproducible size. First, I emptied my bladder and drank two Styrofoam cups of water. While waiting for the water to percolate to my bladder, I went to a treatment room where I was positioned onto a firm bed where a bean-bag-like thing was pushed into the nooks and crannies around the lower half of my horizontal body. By pumping out the air, the tech converted the bag into a form-fitting pod. I’ll use the same pod throughout my proton treatment to start me off in the same position each time. I also got an X in permanent marker on each hip. The pod, hip marks, and already inserted fiducials together help make sure my prostate is in exactly the same place for each treatment.

A CT scan then determined that my bladder wasn’t as large as they wanted it, so I drank a third cup of water and waited another 15 minutes…while holding my position in the body pod. Another CT scan showed that my bladder still wasn’t large enough, so I drank a 4^th cup of water and waited another 15 minutes…still holding the same position.

Finally, everything was the way they wanted it, and they did an MRI of the area to record the exact position of the prostate, the bladder, the SpaceOAR, and everything else in the vicinity. That was it for the day, other than a visit to the Pavilion next door to update some routine blood tests.

My reward for the two-day process was an appointment card showing the date of my first treatment: Tuesday, May 16. The card didn’t say how long the treatments would last, 5 ½ or 8 weeks, but my nurse promised she would check; later that day I got a call from the doctor to tell me it would be 8 weeks. Allowing for some non-proton treatment days for holidays and system maintenance, it appears my last treatment will be about July 12.