Another long delay between posting.  I have been dedicating a lot of my energies towards my job, a lot of extra time devoted to exploring ways that I might be able to affect changes in some of our processes.  I come to this job, to this organization with a pair of fresh eyes.  The organization is large and growing still, extending its reach across the state.  But with its growth comes an increase in complexity – of systems, of challenges, of administrative structure.  More levels, more problems.  There is a concept called empowered nursing.  Something I subscribe to.  A concept my organization professes to value also.  So even though it is dark outside, windy and wet.  And even though I am struggling to shrug off a persistent virus that drains my energies.  Even so I will continue tilting at windmills…

A couple of new bloggers have contacted me recently.  We passed the 150,000 visits mark almost unnoticed.  RoniLynn writes about her mother’s battle with lung cancer at optimism and me.  Not too many lung cancer bloggers around.  I have excerpted from a recent post below.

Removing The Stigma

Being diagnosed with lung cancer doesn’t make you a bad person. It doesn’t mean you’re awful or mean or irresponsible.  Being diagnosed with lung cancer shouldn’t make you a piranha. Lung cancer patients are loving mothers and fathers, dedicated teachers and giving spouses.  Smokers, even former smokers, who get lung cancer, are treated like the scum of the earth.  The difficulty in changing minds and building tolerance is that there are two different ‘groups’ affected by lung cancer…non-smokers and smokers.  Between those two groups, though they suffer from the SAME disease, one group sees the other group as ‘different.  One group feels they are different because they got lung cancer in a different way (even if they don’t know HOW they got it).  What saddens me is that the end result is the same, yet no one seems to focus on changing that outcome.

Each day I see signs of discrimination against smokers and non-smokers who have lung cancer. It’s not only discouraging, but it’s sad.  Some individuals make decisions based on their dislike for smokers and smoking.  None of us like being around smoke-filled environments, but we don’t know each person’s story.  The blatant discrimination is why there isn’t as much funding, awareness or research being conducted on lung cancer compared to other types of cancer, despite the fact that lung cancer ranks number 1 in cancer deaths.  No one seems to understand how addictive cigarettes are and how hard it is for many smokers to quit.  Granted, there are some smokers who choose not to quit and haven’t tried.  I suppose that’s no different than those who choose to have unprotected sex despite the warnings that doing so could possibly expose them to sexually transmitted diseases and even worse, HIV.  Some people you just can’t reach, no matter how dire the consequences.

Having said all that, let’s not shame or ignore those smokers and former smokers who have had a hard time trying to quit.  I’ve seen what lung cancer can do.  I don’t know how much longer my mom has or how much fight she has left in her. But what I do know is that I plan to do all I can to help remove the stigma surrounding lung cancer so that those who suffer from it don’t have to die premature and painful deaths.

~ optimism and me

I was just looking through my blog stats when I came across this remarkable post from my nursing colleague’s blog oncRN.  I don’t know how I missed it last year.  I hope my fellow nurses at the medical center will have an opportunity to read it.

hope

hope is the thing with feathers that perches in the soul …
emily dickinson

…and in the pleading eyes of your patient that look to you to make something positive out of their bleak circumstances. i can tell him what the physician already has – that the medicines we’re trying aren’t working, that we don’t know of any that will, that we will support him in any way we can, that we wish it could be different. i will tell him all of that and he’ll still say, “but you’re not giving up hope are you?” and i’ll wonder if i’m any better than a politician when i talk my way around that very difficult question. because i do hope for you, kind soul,
that you get to your grandson’s school play
that you’re given a respite from nausea this weekend
that you don’t need to stay for transfusions on tuesday
that the snow doesn’t keep your sister from coming to visit
that your blood counts look a little better today
that your football team wins

i hope for a lot. and, no, i’m not giving up.

he is in leukemia limbo hell where you’re not dying, but you’re something short of really living. where your blood counts keep you tethered to the hospital with bleeding and infection and transfusion needs lurking around every corner. where, medically, there’s very little to do except react to a variety of flares the body throws up. where, as providers, you’ll be saddened but not surprised when things take a turn for the worse.

it is in just such periods where physicians can be rendered impotent from lack of things to ‘do’, that nursing care moves to the front lines. and as sad and exhausting as it can be some days, it’s a gift to be connected to people in this way. a gift that i’d like to take back some days and exchange for something a little funner or slightly less gut wrenching. because they count on us so much – for conversation on long days, for encouragement, for helping them navigate increasingly difficult terrain. they need us to ask them about how they’re feeling and to sit and listen to the answer. they need us to help them process what they’re hearing from their doctors, what they’re seeing happen to their bodies, and what they can expect in the weeks to come.

passing by my colleague’s desks i see that december’s cookies and chocolates have been replaced with january’s power drinks and protein bars. trying to start anew…to get stronger…to purify. or maybe they’re just trying to lose 5 lbs. we here at OncRN choose to ascribe deep philosophical meaning to ev.ry.thing. that’s just how we roll.

and we do, each of us, need to find ways to stay strong in body and spirit, because some days it’s really just a job – like any other – full of hassles – where the printer won’t work and people can’t seem to agree on the details of your job description and there’s more work to do than hours in your day. but what makes it unique is that each day holds the possibility of something unfolding in front of you
that makes you confront your own mortality
and everyone else’s.
and makes you ponder the meaning of life
and specifically, the meaning of yours.

and it can rock your world – with sadness, yes occasionally. but more often than not it’s hope rising out of the physical rubble left in cancer’s wake that makes me catch my breath.

it is that hope perched so delicately in the souls of patients that guides and humbles and sometimes saves those of us entrusted to care for them.

~ oncRN

My beautiful granddaughter??!!

When I started my new job as a nurse in the bone marrow transplant clinic, I knew it would take time away from this website.  I did not realize how energized I would feel.  I am part of the generation that was going to change the world, that was going to make a difference.  During my coming of age years the Civil Rights movement was born; the ecological impulse, Earth Day, Going Green all emerged; the Sexual Revolution ensued following by a re-energized struggle to advance Women’s Rights; and, perhaps overriding all, the protests to end the war in faraway VietNam, a war which would claim the lives of 58,000 Americans.

I love my job.  I love the hours.  I like having the time during the evening to sit down with my patients and have them tell me their stories.  On the evening shift there is time for quiet, reflective moments.  I have always been a better person when I am in my role as a nurse.

Soon I discovered that the impulse to “make a difference” could not be contained by my clinic job alone.  I had returned like a pilgrim in the desert, after a long seven year absence.  I had high expectations of the medical center.  These expectations were too high perhaps.  So I now see it as my responsibility, springing from that same 60’s impulse, to work to try to make a difference.

I have had a very blessed career, with many opportunities to act upon the national and international healthcare stage.  One of the things that my leukemia stole from me was seven years of professional life.  I am always reminded that I am blessed to have even had that seven years of Life period.  And I do value the work that I have been able to do with my two websites, with other cancer survivors, especially those with my rare leukemia.

But there was something missing.  Perhaps it was the immediacy, the directness of patient care.  I am 64 years old.  I don’t necessarily feel old.  But I don’t know how much longer I will be able to continue to work.  I don’t know for sure if my disease will ever return.  If it does, it will certainly be more vicious this time around.

So I feel that I will need to compress those seven lost years into just a few.  I have had extraordinary opportunities in my career as a nurse.  It feels that now is the time to focus all of that collective experience as a nurse, as an educator, as a leader into improving the conditions and programs of which I am now a part, though a minor one.

This week I am speaking at a series employee forums.  I am the opening act, sharing in just three or four minutes, some patient stories underscoring the meaning of working in healthcare.  I have worked to revitalize the department virtual community, an on-line webpage serving as a source of information, professional growth, mentoring, and sharing.

I have my sights on some larger projects:  improving various service delivery processes, building a cancer nursing community across a vast healthcare enterprise, and looking for ways to improve patient education, survivor empowerment, and the “patient experience” as a whole.

Now it seems to me is the time to gather together all of the themes of my past twenty-five years – the subjective experience of illness, the importance of narrative, the role and nature of relationships in healthcare, the influence of culture on interpretation, the sustainability of professional development.  At the far end of my career it is time to synthesize all of these elements into a focused and sustained effort to again “make a difference” and to pay back the grace and blessings of my life.

In the process I will try not to neglect this site, recognizing the unique function that it serves for cancer survivors.  I need to find ways in which to integrate this work into my work at the hospital.  So bear with me as I work to improve this formula.  And, as always, I love to hear your ideas, suggestions, and reactions.

Take care,

dennis

I am back in nursing and it feels good.  I am working at the Bone Marrow Transplant Clinic, just across the hall from where I received a life-saving stem cell transplant seven years ago next month.  I arrive at work at five in the afternoon each weekday.  Somedays I leave as early as seven while others I am there until almost midnight.

A good number of our patients are either preparing for or recovering from a transplant.  Others have cancer diagnoses but their treatment does not call for a transplant but rather chemo and radiation, or surgery.  Still others have a neurological or rheumatoid condition that calls for some kind of chemo drug.  Many patients are there to receive blood transfusions.  We are the only clinic at the vast medical center open past six in the evening and one of the few places offering outpatient blood transfusions.

Many cancer therapies can be time-consuming.  Typical patients need two units of packed red blood cells as well as a unit of platelets.  The actual infusion can take five to six hours.  A type and crossmatch lab test must be done and this adds one to three hours.

Previously I had worked seventeen years as an inpatient nurse.  I knew the medical and social histories of my patients.  Though days were busy, there was a predictable rhythm.  Moving to an outpatient clinic on the dayshift was quite an adjustment.  Patients are not categorized according to their disease but rather what treatment they are there for that day – chemo, blood, immunoglobulin, restoring chemical imbalances of potassium or magnesium, receiving an injection or maybe just having blood drawn for lab tests.  Patient turnover can be high.  The pace can be frenetic.

On evenings the pace is more laid back, like myself.  I have a greater opportunity to get to know my patients, their families, their stories and histories.  Many times I can sit on my short stool and talk with them eye-to-eye as they relax in their lounging chairs.  Most of you know what I am talking about, have been there, have done that.

It didn’t take long before I was witnessing examples of grace and courage like those that have sustained me through decades of what can be a difficult profession.  While I was still in orientation, I was on the elevator one day going to the cafeteria for lunch. There was a couple and an older woman on the elevator with me.  We exchanged a few comments about the hot weather.  When we reached the first floor, the door opened. As I was stepping out, I heard the man say “God bless you for the work that you do.”  The door closed just as quickly as elevator delivered its remaining passengers to some basement department.  A man whom I had never met, would never see again – a man with whom my entire relationship consisted of perhaps 28 seconds – this man had succinctly and precisely underscored the value of the job to which I had so recently returned to after a seven year absence.

On several consecutive evenings during my first week off orientation I had to give a single, subcutaneous injection to an older woman who was preparing for her own autologous transplant.  The medicine would stimulate her body, her bone marrow to manufacture more than the normal amount of stem cells, progenitor cells that would later form into an effective immune system.  These millions of cells would be mechanically “harvested” the following day through a procedure much like dialysis.  This lady, a former school teacher much like myself, would always be accompanied by her husband.  The “shot” is pretty straightforward – thin, short needle…over in five seconds.

The scene was pretty typical.  Patient in a recliner.  Husband in an armchair beside her.  Everyone chatting lightly.  Take and record her vital signs.  The bring out my tray with a syringe, an alcohol pad, and a bandage.  But when I set the tray down on the arm-table, the husband immediately rose from his chair, knelt down on one knee, and held his wife’s hand, letting go only when I had finished my task and was applying the bandage.  Less than ten minutes and their visit was over. They headed out into the humid night air and back to their “normal” life, leaving me with this simple, exquisite memory.

Take care, Dennis