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

This may well be the longest I have been away from my blog – 26 days!  When I started my new job working as a nurse in the Bone Marrow Transplant Clinic, I did not know to what extent it might affect my blogging activity.  Now I have a better idea although things should improve.  I am working three ten hour days a week during orientation.  There are many things I need to learn: new drugs, new equipment, relearning old skills, remembering many of the facts and procedures I have forgotten, new computer software systems, operations and systems specific to the IU Health in general and the BMT Clinic specifically.

These things can only be learned on day shift since I will be working solo when I switch to my evening hours.  The pace has been a physical, mental, and emotional strain.  I am going from being “disabled” to working ten hours shifts, spending most of the time on my feet.  I am used to getting 9-10 hours of sleep and getting up around nine in the morning.  Now I am at work by 7:30.  And because of the parking situation – 22,000 university students and staff competing with 10,000 health system employees – I have to park a ways from the hospital, leaving home early to take a shuttle from the outlying parking lot.

Of course, this was all complicated by being in the hospital for five days.  We just received the $30,000 bill yesterday.  My body always takes a while to recover.  But I felt like a needed to get back to my orientation quickly.  So I probably pushed myself.  I received extra doses of corticosteroids during hospitalization.  I was discharged with transient hypertension which persisted for three days.  Over the first two weeks I had several more periods of high blood pressure while at work.  My hands started trembling, my heart seemed to flutter and I felt lightheaded.  I went to my doctor, for the second time since discharge, and got started on a “beta blocker” to straighten out the pressure problem.  Only now my pressure was getting too low and I began to feel faint.  So we are still fine-tuning the dose.

Eleven hours makes for a long day.  I get home around 7, retire to the recliner, remote in hand.  I try to arrange my schedule so that I only work every other day – Monday, Wednesday, and Fridays.  I usually feel wasted each day following a work day.  Hopefully I will get strong and build my endurance.

One is tempted to think that returning to nursing would be like riding a bicycle – everything would just come back somehow.  I have discovered that returning to nursing is more like riding a unicycle while juggling six balls, balancing a spinning plate on your nose, and knowing how the repair the bike when things go wrong.  Working as a nurse automatically means multi-tasking.  People on disability don’t do a lot of multi-tasking.

So here I am, back at the keyboard.  I have Father’s Day in front of me.  It’s too rainy to work in the garden.  I plan to publish this post.  Then I want to troll the cancer blogging community for more examples of excellent writing about our collective cancer experience.  I go to my evening shift in two weeks.  Then I will have more time and hopefully more energy to devote to the network.

Take care, Dennis

I guess it’s one of life’s little jokes, its persistent sense of irony.  Since I was declared no longer disabled by my insurance company in January, I have been struggling to put together a new sense of identity. I needed to begin seeing myself as more fully enabled.  Given my restrictions it was more difficult than I thought it would be to find a suitable job.  This despite or maybe because of my rich career history in nursing.

I did some seasonal work grading statewide elementary school tests, scoring the same seventh-grade essay question and then the same fifth-grade math question thousands of times over.  There was a kind of enlightened tedium to the work and, at the same time, a sort of nobility.  Many of my co-workers were between real jobs or otherwise struggling with the economy.

When I was called in for an interview for a part-time position at the university bone marrow transplant clinic, it seemed an ideal opportunity.  Less than five hours a day, evening hours to leave my days free to care for my granddaughters and mother, minimal exposure to infectious patients and the large masses of people that populate the medical campus during the day.  And most of all the chance to return to what I knew – both as a professional and as a patient – that hard-won experience.  This was a chance to share my knowledge and the lessons of my suffering.

The first week of general hospital and nursing orientation was full and exciting for me, especially after my seven-year sabbatical.  Two major health care system had recently completed their merger.  Each day we parked at one hospital, then rode the overhead monorail system to the new training center.  Continuing on the route takes you to the medical campus with its various hospitals, outpatient clinics, research centers, and schools of nursing, medicine, and dentistry.

Except for the stress of getting up early each day (like most normal people) and spending eight hours a day at something (again like normal people), it was an invigorating experience.  I was beginning to feel empowered again.  That I had to spend a few more hours each day getting the house and garden ready for the baby shower probably took its toll.  My immune system seems sensitive to stress.

By Saturday after that first week I had developed a strep infection.  This turned to scarlet fever and then to sepsis, followed by acute renal failure and hypokalemia.  I haven’t been sick enough to be hospitalized in over a year.  But this turned out to have been sicker than I have been in a long time.  I rarely end up in critical care.

Life turns so quickly.  One day I was feeling empowered, restored.  Then overnight I found myself debilitated and in danger.  Things stabilized quickly enough but it is a long slough.  My new manager was great but it was embarrassing to have to call in sick on my first day.

This is maybe two steps forward and only one back.  My new nursing scrubs are still packed in bags, sitting on the dresser.  Later today we will work on rescheduling my orientation at the clinic.  I did take the opportunity as I lay on carts and beds transitioning through the various levels of a modern health care system to reflect on what was happening to me, to observe how my new institution’s mission and values were interpreted and practiced from my own ceiling-focused vantage point.

We humans have always been able to find the good in the bad.  I will use this experience to further inform what I bring to my own practice of caring.  Along the way I will write about it here.  Thanks for all the good wishes.

Take care, Dennis

On Monday I start orientation to my new job working evenings in the Bone Marrow Transplant Clinic at Indiana University.  I am looking forward to everything but getting up at 6 in the morning.

As part of my job search, I had subscribed to a number of nursing sites and discussion groups.  Just after you offered me this job, I saw an announcement on the site NurseTogether.com for an essay contest.  The prize was a $250 gift certificate at Tafford Uniforms.
I put together some of my thoughts about returning to nursing after my illness-imposed sabbatical.  I am proud to say that I was informed last week that my essay “Resurrection” has been selected as the contest winner.  The essay is featured on their homepage.

When I left nursing, first in 2001 and then again in 2004, I thought that I might die.  As this spring season ebbs, I find myself returning to nursing, and to the place of my re-birth.
Just before Christmas, almost ten years ago, I was diagnosed with a rare type of cancer – T-cell prolymphocytic leukemia, described in the literature as “aggressive” and “invariably fatal.”  I had been an oncology nurse for fifteen years, ironically caring for inpatients fighting some kind of leukemia or lymphoma. I guess I had forgotten to sign up for the dispensation.

I responded to a new biotherapy and achieved remission, only to relapse, as promised by the same literature, twenty-six months later.  More biotherapy and then on to what may have been a curative treatment for an incurable disease – an allogeneic peripheral blood stem cell transplant.  My immune system transplant, a literal re-birth, took place at the university hospital.

Seven years later I find myself returning to the same hospital, to the same transplant center – this time as a clinic nurse.  An appropriate symmetry.
I had always said that I was a better human being as a nurse.
While I was fighting active disease and then enduring my prolonged recovery, I morphed into a different kind of person.  My journey turned increasingly inward, familiar, and safe.  My contacts with the world faded and become less immediate.  For me there has been nothing quite like nursing for prodding my natural tendency toward introversion into an outward direction.
During my recent interview with the manager of the bone marrow clinic, I found that our conversation was punctuated by stories from my professional past, stories of patients and their families, stories of hope and fear, of tears and laughter.
I worked plenty of overtime over the years and was heavily involved professionally so my life was always dominated somewhat by cancer.  That, of course, was nothing compared to the immersion into the world of cancer that has been my experience for the past ten years.
Throughout the trajectory of my illness and treatment, I have spoken about my experiences, both in person and in print.  I have made my illness narrative inordinately public.  If you google the name of my disease, you will find me in the first three entries – usually below the Wikipedia reference but just above that seminal article that predicts “invariably fatal” results.  Consequently many people have contacted me over the years, patients or their families, about my leukemia and transplant.
I maintain two websites that I share with cancer survivors.  One site has had over 108,000 visits.  So I keep in touch.  I thought I had my hand on the pulse of cancer.  But that contact, though rewarding, has been mostly virtual.
Many of my fellow survivors refer to cancer as the “Beast.”  Returning to nursing, this time as a survivor, is like returning to the belly of the beast.  In working at the transplant clinic, I feel as though I am venturing into its heart.
I have been on disability for a long time.  I will be working only about half-time, four or so hours five evenings week.  I think that I saw this job opportunity as a gradual reintroduction to my nursing career.  But in the days after my interview I realized that there was no such thing as returning to nursing halfway.  If I want to be truly effective, I feel that I must be able to present myself wholly and authentically.
My return to clinical nursing may be marked by contradiction.  I will need to formulate a healing identity that draws upon the best lessons of both worlds, that of professional care provider and that of cancer survivor.  I was reminded just this morning that I am bound in each of those spheres.
I was awakened by a telephone call from a nurse at the occupational health center at the university hospital.Yesterday I went for my pre-employment physical.  Blood was drawn since I will be giving chemotherapy in my new role.  The nurse called to alert me that my blood count values were “off,” not diagnostically low but certainly on the far side of the bell-shaped curve of normalcy.  An immunocompromised nurse working in the land of the immunosuppressed.
I have long said that I was at my best as a human being on this earth in my work as a nurse.  With the experience of having faced the ultimate uncertainty in life, my approach to treating people with cancer will surely be “evidence-based.”
I have faced the “Beast”.  I have won my battles.  And now I am back.  I am a nurse once more.

Gateway to a future...

Job News:

Just about seven  years ago I was reborn at Indiana University Hospital.  With my brother as my donor I underwent an allogeneic peripheral blood stem cell transplant.  My twenty-two days there remain hazy, a vague kind of dream from which I awoke with a new life.  Part of the time I was fighting the predictable infections that accompany the procedure – that period when my immune system in defenseless while engraftment is taking place deep in my bone marrow.

I remember well the night I got up to go the bathroom.  Yes, the nurses said to put on the call light first.  But I was an adult.  I was a nurse so I was capable of assessing my ability to walk unaided.  Then the room began to spin.  I whirled and crashed in to glass-fronted cabinet, bumping my head on the corner.

Dejected and embarrassed, I sat down on the bed and put on my call light.  Two nurses rushed into my room, examined the small cut on my forehead and scolded me gently.  My wife came in at 3:30 in the morning.  I went downstairs for a CT scan.  I remember being bald at the time but for the rest I would have to consult my Caringbridge entries.

Today I accepted a position working part-time evenings in the Bone Marrow Transplant Clinic at the same hospital, just down the hall from my original room.  This will be an ideal job.  I will be the only person in the clinic after six.  My patients will not be there for active infections.  The rooms are Hepa-filtered. And I only work 4.5 hours a day.  So my exposure risk (my immune system is still immature at six years old) and working hours are minimized.

I will still have days free to care for my granddaughters and my mother.  But the biggest excitement is   being able to share with my patients the kind of additional legitimacy conferred by our shared experience, in addition to my twenty-five year background in oncology.  So in returning to IU there is an appropriate kind of symmetry.

We will have to see how this new schedule affects my ability to keep up with the blog.  On the other hand, having the opportunity to work so closely again with people struggling with cancer will certainly give me more to write about.

Book News:

Sheryl Crow – Rockstar.  Singer-songwriter.  Record producer.  Actress.
Cancer survivor.  Activist.  Mother.  And now Cookbook author has written a new book  – IF IT MAKES YOU HEALTHY–written with Chef Chuck White–is filled with over 125 seasonal, locally grown and delicious recipes as well as notes from Sheryl about life on the road, home, and stories of her childhood & path to stardom.

Ashley Murphy, fellow blogger (Ashley’s Art Closet) and liver cancer survivor, announces publication of her book Daddy’s Briefcase.

Check it out at http://ashleysartcloset.blogspot.com/2011/03/daddys-briefcase.html

Drug News:

Pharmaceutical Research and Manufacturers of America (PhRMA) is offering  a new report that details 887 new medicines in clinical trials or under FDA review for Cancer. Go to Cancer | PhRMA and download the 92 page PDF file at the bottom of the page.  Drugs in development are divided according to kind of cancer.

Earlier in the week I was buying gas at the supermarket filling station in the middle of a large parking lot.  As I climbed back in my truck, I noticed a middle-aged man walking across the lot.  Actually “hobbling” would better describe his gait.  While his left foot seemed to proceed normally, he  “dragged” his right foot at right-angles behind him.  He wore a stylish light winter jacket, slanted woolen cap, striped scarf and glasses.

For some reason I imagined that he was gainfully employed but possessed of some physical handicap, perhaps a cerebral palsy-type disorder.  Yet he seemed to be moving purposefully.  But the extra effort and concentration required to drag his affected limb was obvious.  I felt that he must be a stalwart individual, someone to be admired.

This was the image that I strove to bring to mind since Wednesday.  On Wednesday I finally got a telephone call from Unum, the insurance company that has been sending me a disability check since my bone marrow transplant in 2004.  They have been reviewing my case since early last summer.  If you recall, the review was precipitated by my starting to work ten hours a week at a local specialty wine and spirits shop – a move inspired by a desire to get out of the house and to earn some “pin money.”

Bruce, my disability benefits specialist who has always been easy and civil to work with (as I have striven to have been also), called to tell me that, effective that day, I no longer met Unum’s definition of disabled and consequently my monthly payments would cease.  An eight page follow-up letter is in the mail.  We spent about twenty minutes on the telephone as Bruce elaborated on the review process and answered my questions.

All of my hospital and doctors records had been reviewed by various personnel, including a nurse, a family practice physician and a hematologist.  These evaluations were shared with a vocational counselor.  In the end it was determined that I could perform at least three types of sedentary nursing positions – a medical case reviewer for an insurance company, a tele-triage nurse, or a nurse consultant.  Wages were calculated for each of these generic jobs.  These potential wages exceeded Unum’s determination of what constituted “gainful employment” for someone with my education and experience.

An appeal procedure is still a possibility but one that I am unlikely to pursue.  The phone call came as something of an expected shock.  The process had lingered so long we had begun to think that the decision might be leaning on my favor.  My reaction was stronger than I imagined.  How would this change my life?  Will I succeed in this next phase of my career?

Actually I have been trying to be proactive.  I had updated my resume and posted it on several sites.   Over the past two months I applied for six positions at three hospitals and a pharmaceutical company.  The result – two interviews but no job offers.  My nursing license expired five years ago.  So I have been doing on-line CEUs before applying for renewal.  I alternate between excitement and dread at the possibility of returning to nursing.  I still have a certain measure of disability – blind in one eye, no sense of smell, fatigue, difficulty reading, chronically marginal blood counts, and a propensity to get every infection that comes around.  I have had to call in sick a number of times for my very part-time wine job.

But then I think of the man in the parking lot who seemed to have a more pronounced disability than I.

Over the years I would occasionally question my disability.  But I was not feigning anything, I was not being dishonest.  I have spent an inordinate amount to time in hospital over the past six years.  And years after my transplant I am still seeing the clinic physicians on a regular basis.  In fact the joke is that no matter how I try to extend the time between appointments,  I always seem to need doctoring on a more frequent basis.  I never felt guilty about receiving my checks.  It was insurance after all.  I paid disability premiums for years even though I was healthy and never expected a serious illness until I was in retirement age.

So here I am, once more in the position of having to redefine myself, a prospect suggesting both hope and fear.  But then you think of the alternative, especially in wake of fellow-blogger Daria Maluta’s death, your life is cast in a different, brighter light.

waiting...

There are a number of limbos that we cancer survivors endure – waiting for test results especially biopsy results, wondering when remission will end, worrying if the treatment will take hold.  By that measure the limbo I currently find myself in is not so much a big deal.  You can always count on cancer to put things into perspective.

Where I am is waiting for Unum, my disability insurance company, to decide on extending or terminating my claim.  They have heard from all the doctors, six in number.  But how the dermatologist or otolaryngologist or urologist can shed light on the state of my disability, I have yet to fathom.  Unum have looked at all my recent $50 – $200 pay stubs and the income tax returns for the past two years.  I am just waiting to hear their decision.  Whatever that decision, my Social Security portion will probably follow suit.

An argument can be made in either direction.  Maybe it is time.  I don’t have a classic disability.  And I haven’t been admitted to the hospital since May.  And I do work those 5-10 hours a week at the wine shop.  But … I have lost vision completely in one eye.  I have no sense of smell.  These both permanent.  My muscles are still somewhat atrophied from years on steroids.  The skin on my hands and arms is still paper thin, prone to bruising and bleeding.  I bump into things and have depth perception problems.  And I catch about every bug that goes around.  My immune system is only partially developed, being only six years old.  Fatigue is still an issue.  Refer to the study posted here in November 21, revealing that clinical symptoms persist in survivors, even in remission.

The standard in my disability contract with Unun is that I must be capable of earning about 70% of what I would be if I had not been disabled.  Most of the time this has to do with performing in the profession you have trained in.  In my case, nursing.

So I have started looking into returning to nursing.  Sometimes I get excited about the prospect.  Other times I am a bit scared by it.  Could I manage the energy and stamina to work full time?  And I will have to be careful in selecting a venue.  A bedside hospital environment with its abundant drug-resistant super-germs would be too dangerous for me.  Reading is fatiguing with only the one eye. Who will care for my young granddaughters while their parents work and go to school?  And my mother is needing more attention as her mild cognitive deficits are more rapidly in decline.

I have begun working on my resume – which, at least it seems to me, is impressive.  Twenty years in cancer care – clinical work, nurse management, health education, pharmaceutical consulting, public speaking and teaching in dozens of countries on four continents.  Feel free to read it yourself on my LinkedIn page.

I am trying to plan ahead.  I have the impression that once the decision is made, if it is not in my favor, the monthly checks will cease abruptly – no transition period.  So I have even sent applications in for a couple of interesting jobs in clinical research and multidisciplinary care coordination.  Haven’t heard from either yet.  I hope that age is not a factor.  Shouldn’t be, legally speaking.  Nor should my cancer history and transplant status.  But it is all there, if not in the resume that must include the dates of my degrees (1969 for one – ouch!), then in my cover letter that needs to explain my lack of employment (with minor self-employment) these last six years.  I did include this website, Being Cancer Network, as evidence of my continuing commitment to the cause of cancer, however humble the effort.  (your chance here to offer uplifting comments…)

So here I sit, waiting.  Lying in limbo which, uncomfortable as it is, might be something I look back upon fondly.  I could face a greater dilemma.  Which would be worse – getting denied disability then not being able to find a suitable job? …or… having my disability status affirmed then being offered the perfect job, the crowning achievement of a long, worthy career?

But let’s put this all in a cancer-generated perspective – I should have been dead years ago.

Take care, Dennis