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.