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.