The Green gantry (Pencil Beam) is still having problems so yesterday and today my treatment is on the Yellow gantry (Scatter Beam). Transferring from one gantry type to another is not a simple task. Transferring from a scatter beam gantry to a pencil beam gantry requires input from your doctor, a physicist, and an engineer. […]
Fun Facts
The green gantry, where I am receiving my treatments, is the newest of all the gantries. It has its own dedicated cyclotron. Here are some pictures Taylor took from her computer using my iPhone. The equipment was shipped over from Belgium, and it arrived at the Jacksonville docks, and they had to truck it to […]
The Tour: Part Two
To see a detailed graphical presentation of how a cyclotron works, watch this YouTube video. Watch Video This is a two-hour YouTube video showing the behind-the-scenes workings of the Proton Institute. An institute engineer presents it. Watch This Video Part Three of the tour will be coming soon.
My Dream Team
One of the first messages I received from the UF Health Proton Therapy Institute included the names of the individuals that were going to be on “Your Dream Team”. This included the Radiation Oncologist doctor that was going to oversee my care and my Nurse Case Managers. Well, I’m adding some additional names to my […]
Part Two
Then I met my oncologist team for the first time. By the way, I failed to mention before that everything is color-coded at the Proton Institute. The doctors wear white, the nurses wear blue, and the oncologist team wear black. Breanna is the radiation technologist that met me. She told me that they want me […]
Preparing to Get Underway
Today I heard from Caroline, my care nurse, and she told me that I will receive my treatment appointment times on Friday. My treatments start on Monday, but I don’t know what time. I also heard from Melissa at Third & Main, and my apartment is ready for me. I plan to leave Vero sometime […]
To Be Determined
So, I will be under the proton beam for up to 8 weeks. These are short treatments every day except weekends. My next major decision is to decide whether to come home on the weekends or not. It is over a 3-hour drive from Jacksonville to Vero and I’m not quite sure how I will […]
Looking Ahead
I need to prepare for and move into my temporary residence in Jacksonville starting Sunday, March 12, 2023. On Monday, March 13, at a time yet to be determined I’ll go for a daily proton treatment at the Florida Proton Institute. The institute is about a 5-minute drive from Third & Main and these daily […]
Research
I was asked to participate in a research study. The purpose of this research study is to evaluate the effects of radiation therapy on my tumor and my quality of life. Currently, over 10,000 patients are enrolled in this University of Florida study. In addition, worldwide, it is estimated that by the end of 2019, […]
FINALLY
Today, Friday, February 24, 2023 I learned that the start date for my proton therapy will be Monday, March 13th, 2023. Because of insurance issues it has taken me a year and five months to get the treatment that I wanted for my cancer. There is something definitely wrong with this system. Nancy and I […]
Water
To prepare for today’s procedure I had to take two extra strength Tylenol before the procedure, nitrous oxide during the procedure and two extra strength Tylenol after the procedure. I am very appreciative of the nurse whose primary function during the procedure was to keep me distracted. I learned that she has twin daughters and a […]
Until Further Notice
After Thursday’s procedure, do not ride horseback, bicycle, or motorcycle. This will remind me what it is like and provide an incentive.
The MRI
Today I had the long-awaited MRI and I was in the tube for almost an hour. Four hours later the report was available on one of my portals and I forwarded this report to my nurse Caroline, and she shared it with Doctor Mendenhall. I imagine the doctor was pleased with the report and imaging. […]
Avoid COVID v2
Another reason to follow a tight COVID avoidance protocol. This just in from Scientific American: Many repeat infections are mild, but some studies suggest people who have been infected with COVID more than once are at a greater risk of severe disease or long COVID You can find the entire Scientific American article here: Scientific […]
Avoid COVID
I need to remind myself why it’s necessary for me to follow a tight COVID avoidance protocol.
Patient’s Portal
Today I was reminded to sign into my patient’s portal in preparation for an upcoming medical appointment. During this recent medical journey, I’ve had to set up a few Patient Portals. Of course, they’re all standardized, easy to use, and very accurate, and everyone uses them. (Is there an emoji for sarcasm?) I have learned […]
The Ambassador
In a previous post, I mentioned the Proton Ambassadors list. There was one person on the list of 300 from Vero Beach and I sent him an e-mail, but I never heard back. I wanted to talk with someone in Vero Beach because I had some questions related specifically to Vero. Fortunately, the list also […]
Proton Ambassadors
My dream team has provided me with a list of over 300 men who have agreed to be Proton Ambassadors. This list contains phone numbers and e-mail addresses. We are encouraged to contact them because they have offered to share their experience regarding proton therapy at UFHealth Proton Therapy Institute from their point of view. […]
A Delay Averted
Each time a scan has been ordered as part of my treatment there has been a major delay because of scheduling issues. After my emergency room visit, as I described in a previous post, one doctor ordered a CT Urogram scan. This could have delayed my proton therapy treatments another three to four weeks. After […]
Demoralization Syndrome
It’s not just the patients. “Doctors have long diagnosed many of our sickest patients with “demoralization syndrome,” a condition commonly associated with a terminal illness that’s characterized by a sense of helplessness and loss of purpose. American physicians are now increasingly suffering from a similar condition, except our demoralization is not a reaction to a […]