Aquarius, Please Bear With Us

How To Manage Hydration During Prostate Cancer Radiation Therapy

“Are you ready?” every one of us hears in the waiting room of the prostate radiation treatment center. “Do you feel the urge?” the nurses frequently ask, trying to sound sympathetic but within earshot of everyone in the waiting room. And when these guys are older and their hearing is failing, these beleaguered medical professionals have to repeat themselves even louder. Then it sounds like an exasperated parent dealing with their three year old who is in-between meltdowns with an eminent bladder accident.

“Are you ready?” even the receptionist asks the guy standing before her who is leaning against her sign-in counter, with his eyes nervously darting back and forth from her face to the therapy room door beyond.

That’s what we are all reduced to in the mandatory task of keeping our bladder filled with water in order to tighten it up with water in order to keep it from sagging down over the prostate during the radiation delivery.

We never saw that coming and there aren’t even Cliff’s Notes or “Hydration Preparation for Dummies.” Since grade school when we were frantically waiving our hand, trying to get our teacher’s attention for permission to pee, it has always been the same. Through the years, we’ve rarely got caught short, having to urinate but having no place to go. Whenever we felt the call, we just went to the nearest restroom. Like our ‘videos on demand,’ we are used to urination upon demand.

Now, having been told to drink one-and-a-half 25 ounce plastic containers of water one hour before your therapy, it seems like a setup for failure. Through the years, we have had no practice in ‘holding it.’ We’ve always just gone when we’ve had to go. That’s why every building structure in our society invests in ample restroom facilities. ‘When ya got da go, you’ve got da go.’

So suddenly, within one week’s time of being told that you’ve got a diagnosis of prostate cancer, you’ve got to learn how, for the first time in your life, to make yourself have a full bladder and not urinate through your pants and look like a complete idiot. Every guy going through radiation therapy for prostate cancer finds himself in this predicament. You’ve got to do this for the initial cat scan and MRI alignment of the radiation equipment. You’ve got to do this every day for each of the ensuing 45 days of treatment. Every day! Rain or shine, snow or hail.

So this is a new experience for us with no prior training. We essentially have one week from the diagnosis to the initial equipment setup to get this right.

On the day of diagnosis, we’re told, by a cheerful and well-experienced nurse practitioner, that “my guys drink one-and-a-half these containers one hour before treatment; . . . you want to feel the urge before you go into treatment.”

As you hear her refer to “my guys” it sounds endearing. It sounds somewhat comforting, like a nurturing hen gently but confidently gathering her chicks under her protective wings. And when you’re getting used to your new cancer diagnosis, perhaps even “intermediate” or “advanced” cancer diagnosis, you’ll take all the nurturing that’s available.

But that’s essentially it in terms of instruction. Having heard the level of fluid you’re supposed to down, you want to be like the rest of “her guys” so you put that in your daily check list. But you have no idea what it means “feel the urge” other than feeling the need to urinate.

The first time you try it, you discover there is a range of “feeling the urge” from ‘Oh my gosh, I better be near a bathroom’ to ‘Holy shit, how am I supposed to not wet myself in front of all these people?’

This is totally new ground. You wonder if they did this to prisoners of war to break them down. No matter accomplished you’ve been in your career; no matter how close you are and have been to your friends and loved ones, you are now forced to be in a miserable and potentially socially embarrassing circumstance seemingly beyond your control. Make your self have to pee but you can’t and you’ll have to wait!

One thing that lurks in the back of your mind is if you don’t have enough water suspending your bladder up away from your prostate, the radiation could burn your bladder if it didn’t have enough water and sagged down in the way of the radiation beams aimed at your prostate.

Actually, this fear is unfounded, I’m told by Christ, the radiation technician. “We can see how full your bladder is as we begin and we simply wouldn’t do it if you were not amply hydrated. We’d make you go out and drink some water in the waiting room so you’re always safe.” (Which happened to me at my 3rd treatment.) But more on that in a minute.

Having to drink more water before therapy begins apparently happens so frequently, that they’ve got a water cooler in every waiting area. We are the water bearers – this is the age of Aquarius – at least for next several weeks.

This, of course, is better this than a slow and miserable death, some years later, by prostate cancer that has metastasized to your vital organs – right when you were starting to enjoy your relationships, your life, dance at your kid’s weddings and attend your grandchildren’s graduations.

So what are the tricks to “mastering” your bladder control for the sake of your radiation therapy?

If you ever participated in a competitive sport, you’re in luck. You had to do a lot of things to make the team and thrive on the team. You had to:

  1. Get in shape and exercise
  2. Pay attention to your diet
  3. Practice, practice, practice
  4. Keep it constantly in your head that you can’t do it alone but are on a team that functions interdependently

Here are some straight-forward bits of advice that embody the above four tips.

Whatever shape you are in is what you’ve got. Remember, you have a matter of days from the time you’re diagnosed until you’ve got to get used to having enough water in your bladder to push it up out of the way of the instrumentation. But regardless of your physical condition, at least start walking. Get your muscles and body, in general, to the point of having oxygen and blood going through it to get as good a circulation as possible. You already know you should have been doing this for years but start now if you haven’t already. It makes a difference on a number of levels. Our bodies are complex chemical and nutritional exchanges, all of which helps every bodily, emotional and intellectual function that makes up who we are.

You already know what irritates your bladder – coffee and any drink that has caffeine. There’s caffeine in chocolate. Immediately eliminate all of them from your diet (at least until after you’re cancer-free). Get a grip and take aspirin if you get caffeine-withdrawal headaches but discipline yourself to do it. It makes a huge difference in helping you go through this therapy.

The practice part of it has to start immediately. Being told to drink 1.5 bottles of water one hour before therapy is almost no help unless you put yourself on a timed schedule and record how many oz. you drink; what time you drank it, what time you first realized you felt you have to urinate and at what time you could no longer hold it. That’s three points in time.

You almost have to do this once a day as an experiment because you can’t really do this two or three times in one day. You’ll be hydrated from your first try and any time you try it later that day will not be helpful in your calculations. It will probably take you 4 or 5 days to figure out how long it takes you to feel your bladder full, how many ounces it takes and how long you can hold it until you must relieve yourself.

This obviously takes a disciplined focus and commitment to learning how your body handles water. Each of us are different and it has to do with our level of exercise, when we drink the water, our weight and our level of anxiety.

For my particular body weighing in at around 170, it took me 7 days to find out that if I drank 28 ounces of water, in 40 minutes it would trickle down and my bladder would feel full and I could hold it for another 30 minutes.

The Breakthrough Fact About Hydration

Once time early in my therapy, I was waiting for my turn and I absolutely couldn’t hold it any longer and went into the restroom and let out what I thought was most all of my bladder. I fully expected they’d tell me to go back out to the waiting room and drink 3 cups of water and wait for about 15 minutes. But they didn’t.

They had me come in and get on the table and they could see how much water was in me with their imagery equipment. It was enough, even though I thought I had urinated out everything that was in my bladder.

“It’s because you were hydrated enough. And don’t forget, it takes a while for what you drink to make its way down to your bladder.”

“You were hydrated enough” was the pivotal phrase that turned everything around for me. This is because at the beginning, all I thought was involved was drinking a certain number of ounces of water so many minutes before the therapy. Instead, it’s about hydration. It’s about having getting your body hydrated, having enough fluid running throughout your system so that when you begin drinking your water at a certain time (before the therapy), you will not be starting from zero hydration.

That’s why they say that most of the time, guys come in there on Mondays, after a weekend of not drinking their usual daily fluid for therapy, they are less hydrated than the rest of week when they’ve been consciously drinking for their therapy sessions. Mondays see the most incidences of patients being sent back out to the waiting room to drink more water.

So how to you maintain hydration? In your experimentation, drink other fluids earlier in the day before you drink your water before therapy. You might ordinarily have a protein-blueberry shake at breakfast. You might have a glass of water or green tea with you your eggs or cereal. Whatever you drink at the start of the day, keep doing it and also practice drinking your pre-therapy container of water.

Ideally, by the time you go in for your first session where they calibrate the radiation machine, you should have a pretty decent sense that when they do it, you will be in the zone where your bladder has a lot of water in it but you’re not going crazy trying to hold it. You should be hydrated and that you could hold it another ten minutes or so.

And suppose you can’t? Suppose you have to urinate and you just do?

No problem. If you’ve been drinking fluids throughout the day, you’re already hydrated. IT ALL DOESN’T ONLY DEPEND ON THE WATER YOU DRANK IN THE LAST HOUR TO FILL YOUR BLADDER.

This was startling new information to me that I didn’t get when I was initially told to drink so many ounces of water so minutes before the therapy. After a while, I confidently urinated right before my therapy time and because I was hydrated enough, it was usually determined that I had enough water in my bladder for the treatments.

But I got to this point only with help from the radiation technology team. If you are not hydrated enough, they’ll send you out for a few drinks of water and a few minutes wait. But in the process of experimenting, perhaps by the 2nd or third treatment, you’ll learn exactly how much water (or liquid) before treatment you’ll need and the timing. Learning to fine-tune this process truly takes a team effort. It is a training task that you, primarily, have to do yourself but you have to have the radiation technicians helping you make those final adjustments.

That’s why I’ve used the sports analogy. Most all of it is on you to get in shape and discipline and do what you have to do in order to get hydrated and be in touch with your own bladder. But you need the team around you to make it happen.

As I Transition Out of Your Care …

Dear staff members,

Today is the last of my 45 treatments for prostate cancer. The Maker should have recalled these defective parts centuries ago but a successful class-action suit has yet to be achieved. One out of six males – one out of four on African American models.

Then there’s the design flaws. The main fluid draining conduit runs right through the middle of this walnut-shaped little part but integral to one of the higher orders of human experience. Location, location, location. If you get any swelling or irritation in this flawed part, you’re stuck with the ridiculous drama of having  to know the location of every public drainage facility for miles around. Clearly Google and all of silicone valley partners should have resolved this problem by now.

The same should be said of breast cancer and those who blithely and casually dismiss the worthiness of 99% of the rest of humanity who don’t measure up, in their judgment, to their station in life. Didn’t society move beyond the 19th century classism portrayed in PBS’s Upstairs Downstairs?

But you work at Cancer Care of Western New York and you are doing significant things to resolve these parts of the problems. You serve on a team of gifted individuals who are successfully battling cancer.

Now all of us are compensated for what we do in our careers. No matter where we go, they’ve got to pay us to work there. What is different about what you do is that you are called to be present in healing encounters. Those of us who come through your doors come with some brokenness. We are in transition, having learned that something in our bodies is in need of repair. Surgery, chemotherapy, radiation or a combination of them all.

We come into your office, as you well know, with a the waterfront of fears, unknowns, anxieties and sometimes depression being expressed by all the personality types of humanity.

The cancer, with which we’ve been diagnosed, lingers on like a giant outdoor billboard plopped down on our front yard. It says YOU HAVE CANCER! To our dismay, the giant billboard also appears in our living rooms, kitchens, certainly our restrooms, our cars and at work. CANCER no less. . . . Me, for cripes sake.

So your patients are jumping in and out of all of Kubler-Ross’ s stages of On Death and Dying. Denial, Anger, Bargaining, Depression and Acceptance. Regardless of our grasp on reality, everything is temporary. No matter how many years we’ve enjoyed the comfort of our personal lifestyle and all of its familiar coffee shops, dollar stores, local pubs, favorite shopping malls and TV shows, ‘we’re just a passin’ through.’ Everything changes.

As patients, we also carry into your office a real sense of loss. As we are jolted into realizing that we are in the ever-shortening last stage of our lifetimes, we sense that our lives are going to change. Our lives will never be the same as before.

What we all don’t immediately realize, after our biopsies, is that while you provide care and services for us, we become part of the Cancer Care of WNY team. The closer we follow the play book (the protocol advice of each module’s specialist), the smoother and more effective the results will be in bringing about our healing. But we’ve got to become team players ourselves.

In any spoken or printed words of what would help us, we are not quickly seeing all the work that has produced it. Unless we have benefitted from medical training, we don’t see the thousands of research and practice hours behind each aspect of treatment. We don’t know about the published and collegial-scrutinized research papers, the doctoral dissertations, the measured and evaluated clinical trials, the blind and double blind tests that thousands, before us, have undergone to determine the best courses of treatments. We don’t hear any of that but in a way, we trust that all of those things are behind everything we experience.

Trust. That’s something all of us patients cling to with a lot of motivation. Your white coats are actually not necessary. You’ve got 5 million dollar IMRT machines buzzing their merry way around our bodies like R2D2 on steroids. So we know your competence must precede your responsibilities amidst the mammoth financial investment in this life-sustaining infrastructure around you.

Hope is the holy grail of the healing process. Every one of us is looking for hooks on which to hang our hope for our futures.

By now, we know life will not be the same from this point on. Our frantic but unrealistic hope for lack of change always must yield to reality. “Life is what happens when you’re making other plans.” Reality always trumps and holds all winning cards. With whatever cards we hold, we optimistically call the other side of our transitions “the new normal.”

At Cancer Care of WNY, you are essentially working in a battle zone. You see a lot of suffering and pain. You see, on our faces, the fear, the pain, the depression. Sometimes the brokenness. You see some of us shuffling in and wonder how it is that we are still ambulatory. In nanoseconds, you can sadly see other eminent medical problems that will necessitate care in other clinics.

The other day, in the waiting area, an elderly woman was brought in for therapy in a wheelchair. Shortly after arriving, she began to cry. She was weeping from her unbearable pain. Whatever was the cause, the enormity of her internal pain could not remain silently contained in her frail body.

Fortunately, your staff colleagues rushed to her side and helped her into an examination room for immediate pain support.

Despite all the suffering you see in your patients, you stay focused and resilient. Your energy and fortitude in the midst of the suffering is remarkable. You are thoroughly professional and somehow you remain personable and caring.

But here is where you shine, not only here at the Cancer Care Center of WNY but on into your future.

Not only are your patients in the midst of transitions themselves, all of us experience transitions throughout life. You already have and will definitely undergo changes of your own. You’ll experience transitions in your relationships, in your careers. You’ll change your thinking on some of the things you once valued above all else. Some of the things you pursued will be left behind for other matters you will come to value as more important. As the old Simon and Garfunkel song said, “When I think back on all the crap I learned in high school, it’s a wonder I can think at all.”

As much as we like to embrace our seemingly unchanging world, it changes and we simply can’t control most of it. As do those of us who are patients, you, will go through transitions in your life.

Most of us already have migrated through changes, however old we may be. But when you think back through your transitions, you know there were some difficult ones. But who were the people who helped you most during those transitions?

Significant others. It was a friend or relative who was particularly present in your life when things got out of hand and were most scary. They listened to you when you made no sense. They stayed with you to help you get more information. They were there for you to take in and absorb your frustration, your denial, anger, bargaining, depression and ultimately your acceptance of the way things landed. They were “your person” as the Christina and Meredith characters portray in ABC’s Grey’s Anatomy.

As the same time, that’s not what your job is at work. You have a very medical, technical or clinical responsibility. Certainly the pain and uncertainty you witness on a daily basis causes you to sometimes leave work with your batteries totally drained. You’ve undoubtedly experienced burnout. You may have seriously wondered if there is another line of work that would call forth from you yet untapped yearnings and dreams without leaving you emotionally shredded and run through the wringer.

I was a Protestant minister for fifteen years. I loved the work. The teaching, the counseling, the writing and the many opportunities to be creative were at the center of my academic, intellectual and emotional career life for 60 to 80 hours a week. But I was burned out. I had to get away from the endless hours amidst funerals, crisis counseling and the usual petty skirmishes over which color to paint the lavatories or whether investments on the youth groups should triumph over architectural repairs.

One year, I changed careers. I went into marketing, advertising, writing, technology and videography.

At first, people were utterly shocked that I’d make such a change. Early on, though, I discovered nothing had changed in me. I found the obvious truth that customers (seeking my marketing or technological support) needed the same focus and caring as those who were once my  parishioners. Obviously different contexts and delivery of services but the same focused listening and human caring is needed.

So how is that relevant to your truly brief daily interactions with those of us who are your patients?

It’s clear that your patient encounters are not lengthy sessions on helping us sort through the problems and hardships of our lives. Your job is to empower the therapy and to teach how how to make adjustments that support the therapeutic protocols for our healing.

Your presence in the tasks at hand is the same as how you and I relate to a neighbor when we’re handing them a poorly aimed newspaper. It is the same when we exchange a few words with our mail carrier or a clerk at the store. We’re looking them in the eye and relating to them in an unconditionally accepting and open way. We are taking them fully in, in the moment, however brief the exchange may be.

Your patient encounters all seem to transpire in brief moments. It’s not the duration of the exchange. It’s about how present you are in those moments, even though there are many moments and many of us patients who interact with you throughout the day.

It can, and should, become routine because of the limitations on time and the narrow focus of your work. But the magic ingredient in every one of your patient encounters is you.

The magic that is taking place is in your extending of yourself. Your non-verbal communication. Your tone. Your full presence in those moments, as short as they may be.

In each of these moments, you have been genuine and friendly. It’s when you are being kind and patient with the guy who feels woefully inadequate because he doesn’t think he’ll be able to retain the water he consumed in order to suspend his bladder up out of the way of the soon-to-be radiated prostate. It has been years since he was frantically waiving his hand in second grade to get the teacher’s permission to go to the rest room. The feelings are still the same.

In each of your patient encounter moments, you are being flexible and open for any question that might come your way. When you use your energy and focus beyond your job task to be responsive in these moments, you are being truly present in the moments in this transition period of your patients. You’re putting your personality and humanness into the mundane acts. That makes our experience here, with your team, transformative and healing.

The way you are responding in these moments makes us feel that we are not just in a drive-through medical center, ordering up a cancer cure to go.

Instead, we feel that we are fortunate to be a part of a greater team that is committed to our personal healing. It makes us feel more whole, even though the hand we were dealt is not optimal. You make us remember that however brief the moments we are with you, we are part of something that is much bigger and more embracing than the smaller concerns that are just contained in ourselves. You are making us feel, and reminding us always, that we are all intricately connected to and part of the wonderful human race. You are doing this with your presence.

That’s what I want to thank you for. For what you do, I am grateful. But for who you are and have been, in the 45 days of treatments, for your personal presence in this segment of this transition for me, thank you.

Cherish the abilities you possess and are using in this current career. They are embodied in in your DNA. And nobody, no transition, no circumstance, can ever take away from you the unique aspects of who you are.

Thank you for your presence. I’m sure that many others will feel the same gratitude from your presence in the years to come – wherever you choose to live and work. It is in being mindful of this sense of presence, that you possess, that you will find the meaning of your life. Cherish it.