Going Forward

My post-treatment life is off to a good start. My PSA (proton specific antigen) score had risen slowly since 2013 from 3.5 (normal is usually considered under 4.0, unless it's rising). It was up to 4.1 in 2014, 4.6 in 2015, and 6.0 in late 2015. By late 2016 it was up to 7.1. Before I started the ADT (androgen deprivation therapy, aka stopping production of testosterone) in February, my PSA had reached 8.15. But after three months of ADT, at the beginning of the proton beam therapy, my PSA had plummeted to 1.07. When I completed treatment (still on ADT), my PSA was even lower: only 0.05.

Now, PSA is a tricky and imperfect number. It can continue to fluctuate, depending on the individual and on various factors such as prostate irritation and infection, cancer regrowth, and seemingly random other reasons. My current PSA is considered a baseline that will be used along with future values to determine the long-term trend. But this a GREAT baseline.

My next PSA test will be in October, with another in January. Then, in February, I'll go back to Jacksonville for a follow-up visit and complete examination. While there, I'll try to make it to a Wednesday Lunch Bunch. I'll be an alumnus, and invited to say a few words after the meal.

I'll continue to have regular PSA tests after that, but I'm very optimistic about the results.

Meanwhile, I'm getting back to a normal life in Tallahassee. I restarted eating beans and broccoli, and other potentially gas-producing food, right after the proton beam therapy ended. I started taking anti-oxidant supplements, including Vitamins A, C, and E, turmeric, and Co-Q10, today. By the middle of August there will be no problem going back to regular consumption of bladder irritants such as spicy and salty food, coffee, beer, and wine (although, I must admit, I've had some of those items already and haven't had any new bladder issues. I'm also following my doctor's recommendations for healthy eating and exercise.

The future looks healthy and happy.

Coming up: Links to helpful web sites and reading material.

Photos II (PG-rated; may be unsuitable for small children)

The therapists are often asked to take pictures near the end of the treatment cycle, and on the day of my next-to-last treatment in the Blue Gantry, Michaela and Kelly were happy to oblige.

In the first picture, I have settled into my pod (the blue part under me). I'm wearing a hospital gown, open in the back. From my waist to my knees I also have a towel over me. This gives me the illusion of modesty, while the therapists tug and push my legs and hips into the position needed, as determined by laser beams. I get to keep my socks on; the tile floors are a bit cold. I'm holding a blue rubber ring, so my arms don't droop and possibly pull my body body out of alignment.

At the moment, the place from which the beam emerges is not in position; it's clearly aimed too high. I get positioned first, then the beam. Also, the collimators and plastic modulator are not yet installed in the nozzle.

The large darker disk behind me has two rectangular shapes. Each is the end of an x-ray arm. The whole disk rotates, to bring the x-ray arm into the proper orientation. The entire beam apparatus also rotates, including the gray-and-white "nozzle," the blue housing around it, and all of the beige steel behind that. The therapists have already put both the disk with the x-ray arms and the beam apparatus into approximately the correct orientation for treatment on my left side. When treatment is to be on my right side, the beam apparatus rotates to the top of the room and back down the other side, almost 180 degrees. The x-ray disk also rotates, about 90 degrees clockwise, so there is an x-ray arm at the top. Some people (prostate cancer patients and others) get treatment on both sides during the same session (one side at a time, of course), so they get to see all of the movement.

In the picture below, the initial alignment is complete. One of the x-ray arms has emerged from the back, and is positioned to look at the gold markers installed in my prostate. The beam apparatus rotates slightly, as necessary, and the bed may move slightly up or down, to get the prostate in the cross-hairs, so-to-speak. Note that the brass collimators and plastic modulator are sitting out in the foreground, ready to install in the beam apparatus after everything is aligned.

Next, the therapists retract the x-ray arm, install the collimators and modulator, and leave the room. The single cyclotron proton source is shared by the three treatment areas, so there may or may not be a wait of a few minutes. Soon I hear a whine that rises in pitch. This is the activation of the beam modulator that controls the intensity of the proton beam now being directed into the beam apparatus in my gantry. A couple of minutes later, the whine falls in pitch, and stops. The treatment is over, and I didn't feel a thing. The x-ray arm may come out again then, to check that everything is still in place; that got less common later in my treatment weeks, as I apparently have a prostate that doesn't move around much. When the therapists come back into the room they take the rubber ring out of my hands, lower the table, and help me down to the floor with the help of a step-stool. Nothing left to do but grab my ID card, ensure that the therapists have written down the time and gantry of the next day's treatment, and head for the conveniently located rest room. A quart of water is a lot to hold for an hour! Then I get dressed and walk back to the waiting room. At first I left the building quickly, but as I got to know the other prostate patients and their wives, I stayed and chatted a bit. When Ursula was waiting for me in the waiting room with the others, it was sometimes difficult to drag persuade her to leave.

Photos I (G-rated)

Here are the last things the proton beam saw before it got to me. First, the two brass collimators, together, defined the 2-dimensional shape of the beam when it came from the left side. Each was about 7 inches in diameter and about an inch thick, and each weighed about 5 pounds. Each was made specifically for the shape of my prostate, as seen from the left side.

The third object above, also shown in close-up below, is a hard plastic piece that was added to the stack after the collimators. It's about the same diameter, about twice as thick, and weighs about three pounds. It was sculpted to modulate the intensity of the beam specifically for my prostate. The central part is very thin, and lets most of the protons through. The rest of the sculpted-out part is thicker where a less-intensive beam is needed. The final beam that reached me matched the three-dimensional shape of my prostate.

Each piece is coded with H (head), F (foot), P (posterior), and A (anterior) to ensure that they are inserted into the apparatus in the correct orientation. Each piece also has a label on the edge, seen below, with my name and a bar code. The therapists scan each piece, as well as the body pod and my PTI ID, to make sure that everything matches.

Two more brass collimators and another plastic beam modulator were made to fit the shape of my prostate as seen from the right side. After my series of treatments was finished, the four brass collimators were melted down and recast for another use. The two plastic modulators can't be reused, and I got them as souvenirs of my treatment. I'm not sure yet what I'll do with them. Other recipients of these souvenirs have mentioned some possible uses, including bookends (when mounted on pedestals), ashtrays, nut/candy dishes, and large jello shot molds. I may just hang them on a wall. If located in the living room, they would make excellent conversation starters.

The collimator precision is wasted if the beam isn't aimed accurately. First I settled into the body mold that was prepared for me before treatment started. Then laser beams, pre-programmed for me, were aimed at a target on my hip, marked with permanent marker and covered with a 1" diameter plastic film. The marker locations were established the same day the body mold was prepared, using an x-ray to first establish my exact prostate location (using gold markers previously installed in my prostate). The green marker is used to adjust the proton beam so that hits to within a millimeter or so of its intended target in the prostate. The beam where it enters is offset from the marker. In the picture below, the reddish patch that is mostly below and to the left of the marker, and about three inches across, is where the beam actually hit. This is the "proton sun burn" and various from man to man, depending on skin type and sensitivity. Mine is hard to see without looking carefully, but some men have much redder patches that may itch and flake off. Like a sun burn. The "proton sun burn" will fade away before long, leaving me with only the plastic modulators as souvenirs.

Next post: I'm the center of attraction in the futuristic treatment area.

Reducing the Risk of Initial and Recurrent Prostate Cancer

One of  our Wednesday Lunch Bunch meetings featured a talk by a PTI doctor about prostate cancer risks, both initially and after treatment. He discussed a variety of research studies, and noted that some were contradictory and some recommendations have changed over time. From out of the data he pulled his own current recommendations, and put them into a handout. They don't come with any guarantees, and his recommendations may change as new research is completed, but here they are for now:

Measures That May Help Reduce Risk of Developing Prostate Cancer

• Daily Enteric Coated Aspirin
• BMI less than 30 Kg/sq m (Get Slim)
• Physical Exercise, Adequate Sleep, Frequent Safe Sex
• Plant-based diet with Tomatoes, Soy, Broccoli, Nuts, Berries, Fatty Fish, Green Tea, Coffee
• Vitamin D
• Avoid Large Doses of Vitamin Supplements including Vitamin E, Folic Acid, Zinc
• Avoid Whole Milk (Dairy) and Processed Meats

Measures That May Help Reduce Risk of Recurrence After Treatment

• No Smoking
• BMI less than 30 Kg/sq m (Get skinny)
• Exercise- ≥3 hour vigorously, or 7 hours of brisk walking, per week
• Plant-based diet that includes cruciferous vegetables, nuts, olive-oil
• ≤2 servings of meat per week, and avoid red, processed, fried or grilled
• 4 cups of coffee per day
• 1 glass of red wine per day
• 1 glass of Pomegranate Juice
• Daily 85 mg Enteric Coated Aspirin (AKA baby aspirin)
• Avoid Large Doses of Vitamin Supplements, especially Selenium
• Avoid Whole Milk (Dairy)

Graduation Remarks

Newbies, Graduates, and Alumni are invited to speak at each Wednesday Lunch / Meeting at PTI (the Proton Therapy Institute). Three days ago I attended my last Lunch as a patient, so I was officially a Graduate. Here is what I said. If something doesn't make sense to you, well, the other prostate cancer patients knew exactly what I was talking about.

I’m Gordon Morgan and this is Ursula, my wife and traveling companion for four decades.

I worked in the Florida Department of Transportation for a long time, so I often think of life in transportation terms…

Not long ago, life for Ursula and me was like a fun trip rolling down a highway (think I-10 between the pines, not I-95 between the construction cranes).

Suddenly, there was a detour sign: Prostate Cancer, Exit here.

Following the exit, I saw several more signs: One was This way to radiation, it will work for a while. Another was Turn here for seeds, they’ll probably work. The biggest sign was: Straight ahead for surgery (that sign seemed to lead to a steep drop-off at the end of the road).

Finally, I spotted the path to Jacksonville and proton beam therapy. It was not heavily traveled, but it looked promising.

That path took me through a region of X-rays, MRIs, bone scans, CT-scans, and more. But finally, I got to my destination—which turned out to be... a cruise ship! The SS PTI! I had never been on a cruise ship, but I could tell what it was.

The Admirals of the Fleet (The Executive, Physics, & Medical directors) got the ship built and outfitted. Thank you, especially Dr Mendenhall.

The Captain, for me, was my doctor: he learned where I’d been and where I needed to go, and set the course for my personalized treatment. He also arranged to give me a special OAR, but I never had to help row the ship. That’s good, because the Space OAR is stored in a place that I can’t reach. On the other hand, he took away a hormone--but I’ll get it back later. Thank you, Dr Henderson.

The First Mates (my Case Managers) made sure I followed the Captain’s orders, answered all my questions, and were always available if I needed anything. Thank you, Petro and Alicia.

There were special sailors in the ship dispensary, AKA the Nurses’ Station. They took vitals, helped with procedures, and greeted me cheerfully when I arrived. Thank you, Maggie, Tia, Evelyn, and all the others.

A variety of specialized deck hands staffed the Blue Deck and the Yellow deck (I never saw the Red deck). They were friendly as well as efficient as they helped me settle into a comfy place to lie down every morning…although they only let me stay there a few minutes. And they didn’t serve drinks...but there was plenty of water. A LOT of water. Thank you, John, Jeff, Donny, Loren, Courtney, Laura, Hannah, Dominick, Michela, Tasha, Kelly, Devin, Cindie. Hope I haven’t left out too many.

The SS PTI has many kinds of accommodations for the passengers…Ursula and I were on the Third Deck in the Main part of the ship (Third & Main) quite near the heart of the ship. The smiling stewards there made sure we had everything we needed…and threw an occasional party for everyone. Thank you, Melissa & Debra.

Below deck were the unsung heroes, the physicists, mechanics, and electricians who kept the ship moving. I never saw them, but I appreciate them. There were a few issues, especially on the Yellow deck, but they always got us moving again…sooner or later.

The other passengers on the USS PTI have been amazing. We got to know each other, traded stories and tips for dealing with occasional rough seas, and we made some valuable friends. Without them, it would have been a much longer trip. Thank you to all of you.

The SS PTI encouraged us to get to know each other by providing a large and comfortable waiting room (with Gerri, and now Stacy), support group meetings, and free lunches. Our Social Director hosted meetings, introduced speakers, and answered questions. He also selected and coordinated visits to various ports of call…Italy, Mexico, several sea ports, and other tasty places. Thank you, Brad.

Ursula and I have reached the end of our voyage now. We’ll remember all of it fondly…well most of it…and we’re certainly glad that we got the chance to join so many wonderful people on the SS PTI.

Done!

That's it. I'm finished. It's complete. 39 out of 39. No more getting up at 5:00 am (necessary for the 6:30 am treatment time that I wanted). No more restrictions on beans and cruciferous vegetables (although Ursula cautions me to not rush into anything she'll regret).

My last treatment was at 6:30 this morning. Ursula brought delicious brownies and pecan muffins to distribute to the other patients, the nurses, the therapists, the helpful lady at the waiting room desk, and even the man who watches over the car parking out front. I rang the ceremonial chimes at 7:30. Then it took a while to say goodbye to the other patients/friends, what with all the handshakes, hugs, and well-wishes. Many of the others are also getting close to completion, and everyone was happy.

We still need to pack up and clean the apartment, but we're not in a great hurry. The hard part is over...and it wasn't really even hard.

I'm leaving PTI feeling great, with a lower PSA (as of yesterday morning). I was told that the PSA often takes a while after treatment to go down, but mine has already. In fact, it's so low that I want to wait until my next PSA test results to confirm it before publishing the number. That will be Monday, in Tallahassee.

Much has happened in the last couple of days that I want to write about, including the little speech I gave at my last Lunch Bunch meeting yesterday. I didn't get a standing ovation, but more than a few people told me it was great, both more humorous and more interesting than most. I'll include it in a later post.

Also coming up: pictures! Nothing too graphic, I promise. That post will be mostly G-rated, with maybe a PG picture or two. Stay tuned!

The Final Week

Today, I had my 4th-to-the-last treatment. I also had my last weekly visit with my doctor, and got my discharge instructions: what to do and not do after treatment. That will take an entire post, later.

Tomorrow, Ursula and I will go to our last group lunch with our PTI friends, a seafood restaurant near the beach.

Wednesday, we'll attend our last Wednesday Lunch Bunch / meeting at the PTI, 2nd floor, where I'll be one of the graduates (those who have completed treatment, or will complete it before the following Wednesday lunch). As a graduate, I'll be invited to say a few words...I've been working on my remarks, which I'll publish in a later post. After lunch, I'll join the other graduates in the atrium for a group picture.

Thursday, I'll have my last treatment. Soon after, I'll go to the atrium and swing the rope connected to the large chimes hanging from two stories up. The chime-ringing is usually well-attended and accompanied by applause, congratulations, a variety of photo ops, and even a tear or two.

Everything afterwards will probably feel anti-climactic. We'll say good bye to our new friends, pack up our belongings, and make the bare apartment presentable (we have guidelines from Third and Main on what we need to do). Then we'll be ready to go back to our "real life."

Day-Specific Activities

Following up on my previous post, here is a day-by-day summary of things I don't do every day.

Monday: I have a weekly appointment with my doctor and one of my case managers. The case manager asks me a series of questions about specific areas of my health, including things that may occur because of the testosterone blocking shot (to weaken the testosterone-feeding cancer cells), the SpaceOAR (the insert that separates my lower intestine from my prostate), bladder irritation (due to the proton beam hitting the part of the bladder that's not pushed away by the quart of water I drink before treatment), and other possible issues. I've had no few or no problems in each of these areas, but they keep asking in case something develops. Then my doctor reviews my records and asks if I have any questions. I seldom do, because the case manager covers everything so thoroughly.

Tuesday: Brad, the Patient Services Director for the Proton Therapy Institute (PTI), selects a restaurant in the Jacksonville area to meet for lunch. Brad works with the restaurant to make reservations and make sure there is room for all of the patients and care-givers who want to attend. We all pay for our own lunch, however. Along with waiting-room conversation, this is a great way to get to know others at PTI.

Wednesday morning: Brad hosts a men-only meeting of men getting prostate cancer. We each talk about how we were diagnosed, how we came to be at PTI, and any issues that may concern us. Sometimes Brad will supply answers (he was a therapist at PTI before he became the de facto social director). More often, other patients will chime in with how they have dealt with similar issues. We all learn from each other. One thing we learn is that while we have basic similarities in our history, treatment, and reactions, we're all a little different in subtle areas. These discussions provide a more in-depth picture of what we're doing and how to deal with issues that may come up.

Also Wednesday morning: At the same time as the men's prostate meeting, there is a meeting for care-givers (typically spouses or parents). They share information and ideas about how to support their loved ones who are getting treatment for cancers of the prostate, head, neck, spine, and other areas. Many of those getting treated are children with cancers that are difficult to treat by other methods, and their care-givers can especially benefit from these interactions.

Wednesday noon: PTI hosts a free catered lunch on the second floor of the building for all patients and care-givers. In addition to getting a meal that is balanced and tasty, we hear PTI people (doctor, therapist, researcher, etc.) give an illustrated presentation about an issue related to his or her area of expertise. Then we get to hear from each other. Brad invites Newbies (those who haven't been to a previous lunch) to introduce themselves. This is one way we learn about the variety of cancers being treated. We also find that many patients are from other states (as far as Hawaii), England, Wales, Australia, and other countries. They often talk about how their doctors didn't mention proton therapy, and how their insurance didn't want to cover it (although PTI works with them to find a way). Then Brad asks for input from Alumni, those who have returned for a quick follow-up check and don't want to miss a Wednesday lunch. They typically tell us how glad they are to have been treated at PTI. Finally, we hear from Graduates (those who have finished or nearly finished their treatments and are at their final lunch). They tend to give heart-felt thanks to PTI doctors, therapists, and other staff, and to the other patients with whom they have shared friendship and ideas.

Wednesday evening: Occasionally, the management of Third and Main (where many PTI patients stay) will host a dinner get-together on the premises. They invite all PTI patients and care-givers, even those not staying at Third and Main. Pot-luck contributions are invited but not required, and there is always plenty of good food. These meals can last for several hours before everyone is talked out. They also coordinate a group dinner near the site of Jacksonville's first-Wednesday-of-the-month Art Walk in the Springfield area.

Thursday evening: Same as Tuesday, except it's for dinner at 5:30 and may be at a fancier restaurant.

Friday, Saturday, Sunday: Time to get shopping, museum visiting, and others things done that we didn't have time for earlier in the week. Those who live close by may go home for the weekend; we've been getting back to Tallahassee about every other weekend.

By the way, I've now had 32 of my 39 treatments. I'll have three more this week (the Fourth is a holiday), and four next week. Last treatment: July 13.

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.

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.

Short-term Planning

This morning PTI notified me that my Simulation visit will be on May 2 and 3. This will include a couple of somewhat invasive procedures during which they will inject the liquid that will become the SpaceOAR (a semi-solid substance that separates the prostate from the lower intestine for three months or so). During the same “visit” they will implant the fiduciaries, three small gold markers on my prostate (so its location can be precisely located during each day’s treatment). The next day they will build the body mold that will hold me in the same position for each treatment, design the collimator that will shape the proton beam to match my prostate, and finish my treatment plan.

The Treatment phase will begin about two weeks after that, and will last for either 5 1/2 or 8 weeks. By May 3, I will know which.

Meanwhile, it’s been a month since I got the ADT (Androgen Deprivation Therapy Shot). It hasn’t been as bad as I feared it might be. I’ve had a few “hot flushes” and I’m a little fatigued now and then, but I’m still doing my daily two-mile run or walk. The pituitary gland has shut down my testosterone production as much as it’s going to, so I shouldn’t feel any worse for the duration.

Hip-Hip-Hooray!

Well, today wasn't a shot in the arm for me (my sore hip attests to that), but it was worth celebrating. By getting the ADT shot in Jacksonville today, I now (finally!) have started treatment for my prostate cancer. I haven't experienced any fatigue or hot flashes yet; that may start in the next few days. Or maybe in a week or so; they say the side effects vary quite a bit. In any case, I'm glad the first phase of my treatment has begun.

A Shot in the Arm

At least I hope it’s in my arm. I’m going to Jacksonville tomorrow to get the ADT (androgen deprivation therapy) injection. I was going to get it from my urologist in Tallahassee, but then I thought about all the scheduling difficulties and delays I’ve had with his office. The UF Health people are much more efficient and organized, and I’m sure to get the right shot, sooner.

As for scheduling, all I know now is that my next trip to Jacksonville (for the “Simulation” visit) will be in about two and a half months, with the proton treatment starting a couple of weeks after that. They don’t do exact scheduling this far in advance, but I should know in a couple of months what the exact dates will be. Stay tuned.

Good Test Results, and Progress

The unofficial report today from my PTI case manager is that the CT scan and MRI results from last week are just as problematic as the ultrasound was: that is, not at all. As soon as the PTI doctor makes that conclusion official, he will issue a referral for the next step: the ADT (androgen deprivation therapy) injection. I’ll be able to get it in Tallahassee, saving me a trip to Jacksonville for a 5-minute procedure.

After that, while the drop in my testosterone is busy starving and weakening the prostate cancer cells, all I have to do is wait two and a half months before my next visit to Jacksonville in mid-May. That will be a two-day session of preparation for the actual treatment—which will begin at about the end of May.

When I get more exact dates, I’ll post them.

Last of the Scans?

Well, that was a busy two weeks. While in Houston for Winston’s mother’s Celebration of Life, I got a call from PTI. I was scheduled for the last (hopefully) three scans on Thursday the 16^th, the day after I got back from Houston at 8 pm. So, at 7:30 the next morning I drove to UF Health’s Emerson facility, in South Jacksonville, where I could get all three scans in the same day.

First, the thyroid issue. The endocrinologist did a thorough ultrasound and found two nodules. Both were tiny and “not suspicious.” He said they were too small to even do a needle biopsy, and advised me to get a repeat ultrasound in a year or so.

Next, drink about a quart of barium solution to prepare for the CT scan. It wasn’t as bad as I expected, much like a mocha milk shake made with skim milk.

The barium takes about an hour and a half to spread out inside me, so I went for the MRI of my chest to check on a possible issue with my upper spine and a rib. I put on the hospital gown, and after the tech mentioned I’d get a shot of contrast dye part way through the scan she put me on the MRI bed and moved me into the machine. The usual strange MRI noises started, and then stopped. She moved me back out of the machine, and told me I wouldn’t be able to get the MRI because I was going to have a contrast shot for the upcoming CT scan, and I couldn’t get both contrast shots in the same 24 hours without overloading my kidneys.

So, I waited until the barium was ready and then got the CT scan. This will let us know if I have a problem with my liver. No results yet; perhaps there will be by early next week.

What about the MRI? The MRI machine at the Emerson facility wasn’t available again until next week, but the good people there arranged an appointment for me at the main UF Health campus near downtown. It was scheduled for 24 hours later, of course, so I drove back to Tallahassee. The next morning I drove to Jacksonville again, got the MRI with no problems, and drove back home again. The MRI results also won’t be available until next week. Again, I’ll be patiently waiting.

More Waiting, and Still More Scans

I won’t be going back to Jacksonville this week, but maybe Monday. Or maybe in a couple of weeks.

First, the good news. Apparently they've ruled out any problem with the "hot spot" between my eyes, as they've not scheduled a follow-up to the head x-rays to investigate it.

But now I need three more scans to investigate other possible issues found in the results of earlier tests: an ultrasound of my thyroid, a CT scan of my liver, and a PET scan for my spine. The first two scans are cleared (that is, Medicare will cover them). They’re still working on the PET scan insurance coverage, and that may take a while. 

So, I may go back to Jacksonville for the first two scans on Monday--if they can be scheduled in time.  I’ll be out of town from the 7^th through the 15^th, so the next possible date for the next Jacksonville visit will be the 16^th or the 17^th, or some time the following week. If it’s one of the later dates, I may get the PET scan on the same visit. After all three tests are completed it will take a few days for the results to be reviewed, and if everything is okay I’ll get the ADT injection on still another, later, visit. Then I'll wait two and a half months after that before going back again to begin preparing for the actual proton beam therapy.