We live in a society where 3-letter acronyms strike terror in the hearts of us all: IRS, FBI, CIA, UTI, and MRI, to name a few. For men, and especially for prostate cancer patients and survivors, one of the most fearsome threesome of all is PSA: prostate specific antigen. Too much of it can mean prostate trouble. But for those of us who were treated for prostate cancer with proton beam therapy, there is a totally different PSA that awaits us, lurking in the shadows after completion of our treatment. It sneaks up and engulfs us while our attention is elsewhere, and suddenly we realize we have become a victim of the other PSA: proton separation anxiety.
The First Sign
We finish proton therapy feeling great, revitalized, triumphant, on top of the world. As we pack up and head home, the elation lingers. The next day at home we awaken full of eager anticipation, as has become our habit after many weeks in treatment. We proudly hang our ID card around our neck, check the clock, look at the back of the card for our scheduled gantry time, and then without warning …
… ecstasy turns to agony as we realize it doesn’t matter what time it is because there is no gantry time …
Our euphoria vaporizes, and our ecstasy turns to agony as we realize it doesn’t matter what time it is because there is no gantry time today. No one is going to invite us to empty and drink. We will not be ushered to a private room where our beloved team of caring, loving, competent, professional radiation therapists attend to our needs. Nobody will ask us how it’s going “back there today.” Those days are over, and we have just had our first dose of proton separation anxiety.
The unanticipated feelings of loss, letdown, and longing that occur in the days, weeks, and months immediately following proton beam therapy at facilities like The University of Florida Health Proton Therapy Institute (UFHPTI), where patients are treated as royalty.
Other Symptoms
After the initial onset of our new PSA, we experience other reminders that our radiation vacation is over. We find ourselves aimlessly adrift in a sea of sorrow on a solitary ship with no cruise director. There is no one planning our day for us, no restaurant sign-up sheets, no cultural activities, no group outings, and no social events. Not even a meal or an innocent game of bunco. We have rung the victory chime and left the building. We’re on our own for the first time in quite a while.
… we visit many restaurants, hoping and even expecting them to gleefully provide our usual free lunch, but … not even a ten percent discount.
Each Wednesday we visit many restaurants, hoping and even expecting them to gleefully provide our usual free lunch, but in our world at home there is no such thing as a free lunch. Not even a ten percent discount. So we pay and we eat. And we are further disappointed that none of the restaurant patrons are invited to stand up and share their personal insight into what makes life great, nor do we stand up to fill that void. We just finish our meal and move on.
For those of us not yet retired, another shock awaits us upon our return home. Having grown accustomed to and fond of the relaxed rhythm and pleasant pace of that special place we left behind, we are totally unprepared for the harsh reality of our job. We find that our employer does not understand that we are fundamentally different than before proton and cannot be expected to re-adopt old habits. So we are expected to show up at work each morning. Every day, day after day. And once again, we feel the presence of proton separation anxiety.
Coping Techniques
There are a few things you can do to recapture a tiny taste of the glory days at UFHPTI in Jacksonville, or wherever you were treated in a similar fashion. You can still go online and check the gantry scoreboard. Mine was the blue gantry, and as a blue gantry guy I still get a thrill when blue is ahead of schedule, especially if the others are behind. So I check it a few times a day even now, four years later, and feel a bit of nostalgia and pride when I can privately fist pump a “go, blue!” for the good guys.
… the single most therapeutic technique for relieving proton separation anxiety is simply to wear the robe.
If you are lucky enough to have one of those stylish two-tie open-back robes (I was given one as a gift), you are in luck. Perhaps the single most therapeutic technique for relieving proton separation anxiety is simply to wear the robe. It works anywhere, anytime. Frontwards or backwards, tied or not, as soon as you put it on you will feel relief. Close your eyes, and you can imagine all the magical moments you miss.
If you are still in the midst of proton beam therapy, my advice is to enjoy the experience while you’re there, appreciate the free lunches, and be prepared to miss it at least a little when proton separation anxiety occurs, as it inevitably will.
Please email me (privately) to share your personal experience with proton separation anxiety and coping techniques that worked for you. Stay in touch with your other proton brothers, tell them about proton separation anxiety, and help each other fight this new PSA. We’re all in this together.
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