Side effects of cancer treatments can be devastating for patients and watching them suffer from adverse events has unfortunately become a big part of cancer care for nurses. Setting expectations for adverse events such as hair loss, nausea, and fatigue can often be difficult. Men with prostate cancer, among other precautions associated with treatment, are also having to take special concern for their bone health. The risk of fractures can continue to rise, first while receiving androgen deprivation therapy (ADT) and then later in those patients who unfortunately progress to castration-resistant cancer. A major bone fracture can be devastating to a patient’s health with long recovery times that often require stays in rehab and nursing facilities. 

Communicating with men about bone health and osteoporosis can pose quite a challenge as this is something many men have often associated with women’s health. Educating about bone-directed therapies as well as encouraging compliance becomes a key nursing objective in the prevention of adverse skeletal events as the patient’s disease progresses and also their risk of fracture.

When combination therapies are used, it is important to educate patients about their risk and how to manage their medication. For example, the Flatiron Health prostate cancer registry showed that men with castration-resistant prostate cancer who were treated with radium-223 dichloride (Xofigo) and abiraterone (Zytiga) with prednisone had a lower risk of pathologic fracture if abiraterone acetate was not initiated until 30 or more days after radium-223 instead of both medications being started simultaneously. We may be able to keep patients active and feeling healthier for longer by discussing how fracture risk can be reduced by layering therapy, as well as by working with a multidisciplinary team toward the goal of overall decrease in skeletal-related adverse events.

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Communicating with men about bone health and osteoporosis can pose quite a challenge as this is something many men have often associated with women’s health.

Discussing Skeletal Events for Men With Prostate Cancer

This summer I went on a run, although in my current state of fitness, it may have turned into more of a walk, for prostate cancer. Next month at work, we are making cupcakes for breast cancer in our own competitive in-house version of the cupcake wars, and today some friends of mine raced dragon boats for another similar good cause. We also have Coach bag bingo coming up to try our odds at getting an expensive bag, and recently, we kept the Philadelphia tradition of a beef and beer event to raise money to fight death and disease or to support a family after the fight is lost. 

Why do we want to make things that are so deadly so much fun?

There does seem to be a lot of precedent for making the fight against death terribly fun. The history books are full of events where we all celebrate life while simultaneously trying to defeat death and diseases. Just look up most holidays. Halloween is coming soon, which is an entire holiday devoted to death and the things that scare and frighten us. Somehow, it is all fun. And just after Halloween, there is the day of the dead, which I highly recommend participating in if you are ever given the chance. I was in Peru once for the day of the dead, and I can say that I’ve never had so much fun around a graveyard in my life. Thanksgiving comes next, the day we all pig out on as much turkey and pumpkin pie as we can eat to celebrate the pilgrims cheating death and figuring out how to grow and raise food in their new wold, evading starvation.

Not to be morbid, but the most wonderful celebrations of life are perhaps the moments when we feel most like we have defeated death. And what does this mean for daily life, for the daily life of a nurse? I’ve left work pretty beat down some days, busted up from a long day and just tired. Some days, it does not feel like we are winning much of a fight. I confess, I had a pretty rough week. A friend of mine offered to take me to happy hour, and I was like, yes, please, let's go and relax. We chose a place and were seated at a great table outdoors and then, there, on the other side of the restaurant was a patient with whom I had spent quite a bit of time. At first I thought that this was not ideal for trying to relax. And then I realized, the last time I saw this guy, he was pretty sick. Like really sick and not knowing what to do, bad news sick. And there he was, healthy again, looking phenomenal. And yeah, my long week felt a little less important. Things felt a little more worthwhile. 

The bad experiences tend to stick with us, but what about the good ones, which most definitely outnumber them? What about the people we do not see as patients anymore because they are better? Every day is Halloween or Thanksgiving as a nurse. Considering the fact that these are two of my favorite holidays, that’s not a bad situation in which to find myself. 

Every day is Halloween and Thanksgiving when you are a nurse.

Halloween Actually Lasts All Year for Nurses

One of the things I love about geriatric care is they get to be the only group that really does not have to make too many long term plans and that’s OK. It is not morbid, it is freedom. When my 89 year old patient tells me they will not be getting their surveillance imaging done until much later than is recommended because they would rather spend the summer in their vacation house enjoying themselves, I really am quite proud of them. If a 90 year old’s goal is to be in a cross country bicycle race over receiving chemo, I say go for it. Stay healthy as long as possible and do not let medical people get in your way. 

The professor for my geriatrics class in nursing school had us all read the famous poem “When I Am Old” by Jenny Joseph. In the poem, Joseph dreams of learning to spit, wearing purple with a red hat, spending her pension on brandy and doing all the other things she feels unable to do as a young person who has rent to pay, but she will finally be able to get away with after retirement. At the end of the poem, she thinks perhaps she will start with the purple-wearing now just so nobody is too surprised by her planned post-retirement activities when they actually happen. It is probably one of the most age-positive things I have ever read.

Healthy goals and expectations change as time passes. I might have less treatment options to offer you in your 90’s, but at the same time, you made it that far, and that is quite impressive. For the reason that I love caring for the elderly, no long-term goals, it can also be quite hard. Things will be ending soon which is hard to face. Fragility and frailty is a hard reality to deal with at any age, and it can be difficult for them as well as difficult for us to walk them through it. Confused 90 year olds throw some of the strongest punches I have ever felt and a confused 90 year old in pain is one of the hardest challenges for a nurse.

Caregiver burnout is a real issue we all face and as we are all still young with “rent to pay” so, like Joseph, we cannot be totally carefree yet. In the 2011 ANA Health and Safety Survey Report, the top 3 concerns of nurses were first the “effects of stress and overwork”, second “disabling musculoskeletal injury” and third “contracting an infectious disease”. It’s like the ANA was in my head and labeled my concerns about being a nurse in order. 

I think there is something about starting to wear purple in the here and now that makes Joseph’s poem not only relevant to geriatric care but also relevant to our own personal care. There is something quite beautiful to be gained from observing our well-balanced geriatric patients. It is OK sometimes to go for a bike ride instead of working ourselves into the ground. Take a break and go to the cabin on the lake and don't worry about what the future holds. It is OK to say no to something super stressful and take a day off.

Wear some purple this week, my friends, and maybe learn to spit.

There are lessons on burn-out to be learned from geriatric patients.

Live like you were born in 1925

My favorite kind of pathology reports are probably the same as yours. Obviously "Benign" is our top choice, but let's be honest, sometimes you know that’s not an option and the runners-up tend to be also quite reassuring: "Negative margins," "Non-Invasive," "Low Grade," "no lymph node involvement," "encapsulated," etc. And then, there’s all the other reports: "invasive," "metastasized," "lymph node involvement," "vascular involvement," etc. Pathology reports, like most of life's big events, sometimes offer a definitive answer and sometimes just offer up more questions.

Personally, I find ambiguity to be the biggest challenge. Waiting is hard. Waiting is harder when you don’t know what will happen next. It’s the gray areas of life that are the most difficult. Whether it is a pathology report you are waiting on, news of a job, a pregnancy test, a loan approval, an annual bonus, a phone call, or to finally graduate — the list is endless. We are all moving forward whether we want to or not. Never back. Sometimes we have help, and at other times we feel quite alone.

My husband and I were recently listening to Tracy Chapman sing Dylan’s, “The times they are a changin”, which I would highly recommend. Take for example the first verse:

And if your breath to you is worth saving

Then you better start swimming or you'll sink like a stone

The whole point of this song and I suppose this post is this, things are changing in all of our lives. Whether we want to move from here and now or not, change comes anyway and we have to figure how to swim or face the alternative. Later in the song, we hear “Your old road is rapidly aging”. None of us remain stagnant and in the same place, sometimes despite our best efforts. I suppose the good news is that even the worst points in our life will also be part of this change and we can move past them.

And there in front of us, people in the middle of all our own personal changes, sit our patients in the middle of their own changes, and we find ourselves assuming the role of caregiver. How do we help them and ourselves learn to “start swimming”? Perhaps the most unambiguous part of my life as a nurse is to help somebody else navigate through a tough time. Sometimes a patient just needs to spend some time expressing frustration, doubts, or anger even. We listen to them. We answer their questions, offer advise, create a plan, deal with the pathology report whatever it ends up saying.

We have this gift we can give, relief and help. We get to help somebody else learn to swim in this particular part of their lives, and illness, just as many others have helped us to swim in ours.

Dealing with the ambiguity of life and cancer, inspired by Bob Dylan.

Negative Margins

Medical errors are common, so we are told. I’ve read studies on error rates or lawsuits that made me lose sleep. Medication errors, missed diagnosis, overlooked symptoms. It’s hard to figure out how to balance not wanting to miss anything with the constraints of the day-to-day care of real people in the real world where everything isn’t always available or covered by insurance. We could give all our patients total body scans Star-Trek-style on a regular basis and solve some of the problem, but the fictional has not become reality as of yet.

Sometimes I miss the old days when I catered weddings and the worst error I ever made was bringing the fish when somebody wanted the chicken. I smushed in the side of a wedding cake once too. I’ve made medical errors too, we all have. The sinking feeling when you realize you didn’t double check that dosage, or you accidentally overlooked that one abnormal lab which became a big deal is definitely not my idea of a good day. I once poked myself with a used subcutaneous heparin needle as I quickly slapped on the safety. A lot of good that “safety" did me.

But why do we all keep doing these stressful jobs? Jobs without much room for error. Near misses and close calls and mistakes that get bigger the more we think about them. I certainly hope the satisfaction gained from the successes amidst all the stress is as worth it for you as it has been for me. Nothing beats telling a patient that everything looks good and what we did worked. We go into battle every day and we fight the war against cancer, disease, infection, and death even. That’s pretty amazing, especially on the days you win.

What about the days you do not win and you really mess up and somebody gets hurt?

I need to say that in front of a mirror because among other things, I’m a perfectionist. What did you learn? What can you improve? What will you always look for from now on and never miss because you missed it this one time? We are humans and we make errors. Errors that span from poking our fingers with needles to missing the culture that led to sepsis. Have a little grace for yourself and take the time to be kind.

The best teachers I’ve ever had were immensely kind to me when I made mistakes. We talked about it, maybe they freaked out initially but at the end of the day we constructed the situation into what it really was: learning and humanity. Our patients are not cared for by robots for a reason. With all our errors, nothing replaces the touch and watchful eyes of another human being.

Accidental smashing of wedding cakes is not the kind of stress I’m made for when all is said and done. I’m the kind of gal that, for whatever reason, likes the problem-solving involved in treating urologic diseases and cancers. Explaining that at a family get-together is a whole other story.

How can nursing professionals take medical errors and learn from them?

I Made a Mistake

If you are anything like me, the thing that bugs you the most is the problem yet to be solved. I’ll stay awake at night when I’m super anxious and simply worry about all the little things that need to be fixed in my house. How will I find a mason to fix my crumbling porch steps or my counter top that is wobbly? How much will that cost? Can I afford it? What if I get the wrong person? '

there is no reason to worry about something so solvable in the middle of the night

'now here is another item that I’d like to bring to your attention…'  

What did I worry about before I had a mortgage? I certainly found things. And I doubt I am alone in knowing this feeling. 

You may not worry about home repairs, but you may worry about money, or relationships, marriage or your kids, or, well, your health. And I think the patients we care for are often in the last category on top of all the others when we are interacting with them. Under duress and intense anxiety everyone you meet will have a different coping strategy. Anxious questions, worrying, stony silence, internet research, ignoring the problem, finding a surrogate to worry for them. The list is long. 

I remember one of the first patients I ever did a history and physical on as a new student, who told me quite proudly and confidently that he had no previous medical or surgical history. He was in a nursing home, and I inquired how he had found himself there. 

"Well, back when I was on dialysis, I got really weak and I needed physical therapy."

  "Oh, well you seem pretty active now," I told him. 

"True, but I still need help with my insulin injections every day." 

So I’m guessing he had diabetes and renal failure with a possible transplant?! I admit, part of me envies being able to forget your own medical history. My sage professor chuckled and said I’d meet a lot more people like that, and she was most definitely right. 

For most of our patients, the very real looming cancer diagnosis hangs over their head and escapism is not usually a valid option. Maybe they cope by trying to forget or maybe they cope by planning out all the possible scenarios or somewhere in between but either way, we have a person, in our presence who has something a bit unbearable dangling over their head.  Something we’ve asked them not to walk away from but rather deal with in ways they will likely find very uncomfortable and often painful. 

Even stage I cancers, while they carry a sense of relief that we got it in time, require so much surveillance. It’s like we can never give our patients a break from all the looming what-ifs. And maybe we shouldn’t because after all, they really are there. Cancer recurrence is a very real subject of discussion and how we measure treatments, the 5-year and 10-year marks seemingly so important for research. 

We have all these patients walking around healed, and not yet cured. A very real example of how we all live our lives -- there is always something that can hang over our heads no matter what. Yet, we all wake up in the morning and go about our day. The fragility of life always there and with us, reminding us how precious waking up in the morning actually is even on our worst day. Because, after all, there is always something to conquer and something to look forward to at the end of that battle. 

For patients with cancer especially, dealing with anxiety in a world of unknowns can be difficult.

You Mean I've Got to Live With This?

I recently read an interesting article about an actor who, after playing a role, spoke as though he had actually been his character for six months. He talked about the things he gave up that this character would have given up and the love he felt that this character would have felt. It all seemed quite real to him. It was as though he had stepped into another person’s life just long enough to enjoy and appreciate something only they could appreciate. It was interesting how much joy he seemed to find in this, especially as the character he played had gone through some tough times. 

I think most of my favorite books and movies have been those where somebody steps into another world and experiences the adventure of a lifetime and then, in the end, go back to their ordinary life with a whole new set of eyes for it. In some ways, traveling far from home has a similar effect. One minute you are you and have your same old life, and the next you are stepping off a plane in a whole new world with all new people in it.  The best stories, in my opinion, are the ones we totally get sucked into, where there is a bit of tragedy, a bit of joy, and a stellar ending which leaves room for a whole new story. I totally get into stories. Perhaps that is why I get so into people. 

I do not think I’m off base when I say that we all sit at our desks and nurses' stations with our coworkers and talk. We talk about stories. We talk about our stories and our patients' stories. We process the terrible things we see and the most beautiful. For example, I once played on my smart phone a Sinatra song for an old widower in hospice. He and his wife once danced to this song, throughout their marriage. His family and I watched him gently slip into a sleep, which became a quiet passing.That song seemed to call him back to the one he loved. I still cry when I remember how beautiful it was. On the other side, I can still vividly recall a patient with end-stage cancer, whose life I felt all along that I could not save. He suffered through the administration of every treatment in the book while his family pushed on for everything. Sometimes we do that for the peace of mind that comes from knowing we have tried everything and still failed.  

We nurses think and talk about our own deaths. It is unavoidable and unfortunately can make some of us a bit cold when we are around something we do not especially want to experience firsthand. But what about this "empathy thing" that we see with this actor becoming another person? Are the best stories really the ones which can only occur when we see the world a whole new way? I could be romanticizing what we do, but what a gift to be a part of so many lives, and walk in so many shoes, and thereby receive the gift of seeing our lives from all new eyes. I hope to be like the actor who could do all this and find so much joy from the experience.

The best stories bring us to see our lives with whole new eyes

What if it were me?

So, they are here again, the holidays. Depending on how you grew up, your current relationship status, your current family drama or lack thereof, and a number of other variables usually outside of your control, this is either a great time of year, a stressful time or both. On top of that, let's add the nursing holiday schedule with all its trades, split shifts -- don't forget that Christmas and New Years are both on a weekend this year which always adds an interesting twist to who works what day. And what about the shopping… There is a 6 year old in my life whom I could watch open gifts all day. Her favorite gift I’ve ever bought for her is apparently a roll of glitter tape from the dollar store. If only all the people on my list were into glitter tape.

And then there is cancer. And regardless of how I feel about life, the holidays, relationships, plans, glitter tape, cash flow, family, and schedules, cancer is still there. Now that I think about it, so are a lot of things I’d rather not think about this time of year. Cancer doesn’t seem to take a break for the holidays, at least not that I’ve seen. Which means, we, the nursing community, don’t get to take a break from it either.

Cancer reminds us that life can be, and actually is, a bit out of control. You can pursue the perfect well laid out treatment plan with the most carefully chosen doctors and still find the cancer has metastasized. You can have a recurrence right before your kid’s wedding. You can lose your ability to eat, to eliminate, to sleep without pain. You could pass with family and friends holding your hand or alone in your bathroom. You can even beat it against all odds and walk away with a few surgical scars or a radiation tattoo. You could never have recurrence, or it could come back all over your body.

And while unpredictable holiday drama is nowhere near as important as whether a tumor has metastasized or not, we all find ourselves in situations where the unpredictable has happened. The sinking feeling of hearing bad news or of wondering how did it get to this, or how did it go so far? I’m stuck with this tumor, this debt, this bad decision, this major mistake, something has happened and I can’t make it unhappen. And then there are the wins, often just as unpredictable, when nothing looked like it would turn out and somehow, it just did. Cancer free, out of debt, interpersonal difficulty solved.

We are all a community of people going through this unpredictable life together. Whether you are a patient, a nurse, or both, you are not alone. We are all finding what we most look forward to and what we most wish to avoid in this unpredictable world. So, this holiday season, as much as possible, I plan to hold my loved ones, spend time with my friends, and buy more glitter tape.

The holidays are here again, and cancer hasn't gone anywhere

Oncology for the Holidays

What is acceptable to a patient on palliative care?

I reassured an end stage cancer patient recently that now that he was on palliative care, comfort was our goal, not cure. No more uncomfortable procedures, tests, or chemotherapy. Comfort measures only.

But what if these “comfort” measures don’t give comfort? What if, for example, that foley catheter to drain a bladder that no longer can empty on its own is the worst case scenario for our patient? Uncomfortable with it, uncomfortable without it. What if side effects of pain medications are making the rest of our patient’s life unlivable and unmanageable? Again, uncomfortable with them, uncomfortable without them. Our patient has come to expect that his primary diagnosis will lead to the end of his life, but what about secondary health conditions that he did not count on happening?

The loss of control at end of life feels so real and raw and it is often, as a clinician, hard to face.

We like to fix things, to troubleshoot, to send somebody home in better shape than when we first met them. 

I fixed your bladder drainage problem with this catheter. See, all better now and fixed. 

And yet, we are dealing with a whole person, their spouse, their family, their expectations. It just isn’t that simple.

We are affected by those we treat as we affect them. Many of us often go home after an interaction like that, drained and sad, with the overwhelming feeling of just not having enough to offer. We give ourselves mental-work arounds to prevent burnout and taking too much home with us from work. 

A catheter isn’t that bad, they’ll adjust. 

But there are always cases that stick with us, patients we felt helpless to relieve of their discomfort.

How do you stay in a job that demands you see the hardest part of life: cancer, death, pain and still stay relatively sane and well adjusted?

I would like to say I have the answer, the perfect thing to say, the holistic solution to helping a patient accept what has always been unacceptable in their mind; for example, a catheter. The perfect thing to say to you, a caregiver who takes home that feeling of not enough. But I don’t have that answer. I can only say to my patient, 

This one more thing, an unexpected thing, an uncontrollable thing, on top of all that you have already gone through and endured.

And I can offer to you and to them the suggestion to go home, look around you and see what makes you feel most grateful, what makes you feel most loved and alive. What are your happiest memories and what are your most important conquests. These things make the catheters in life more bearable and maybe even worthwhile.

How can nurses walk through the challenges of palliative care when comforting is uncomfortable?

Accepting the Unacceptable

Lindy J. Jones is a Board Certified Acute Care Adult Gerontology Nurse Practitioner with over ten years of experience in the nursing field. She received her Bachelor of Science degree in Nursing from Immaculata University, then went on to earn her Master of Science degree in Nursing from University of Pennsylvania. Prior to joining St. Mary Comprehensive Urologic Specialists - Langhorne, she has worked as both a House Nurse Practitioner in the Emergency Department and also as a Critical Care Staff Nurse at St. Mary Medical Center.

Lindy J. Jones MSN, CRNP-BC