Many years ago, when I first started nursing, before the time when every other woman under 35 wore a tatoo, back when among men it was just sailors and bikers who sported tatoos, I had an elderly woman patient.  She was on the ICU on ventilator support – she could not talk.  This woman was covered head-to-toe in tatoos.  Her chart said that at a young age she had run away from home.  She had joined a traveling carnival.  A man convinced her that she could make a lot of money as a tatooed lady.  This would have been in the 1930’s.

I always wanted to talk to her about that experience and about her colorful life.  But she died while still on the ventilator.  So I never had the chance.  I still regret that.

Guest Post day has come around once more. I always like it when I find something different. I went to the “Uncommon Cancers” category in Cancer Blogs II. After looking at one or two blogs, I noticed this blog by an oncology nurse. I had put it on the list early last year and had not had a chance to get back since. This entry is a free verse story about one memorable patient and his family. Our nurse blogger writes at oncRN.

passage

i won’t ever forget the family from the Congo
who moved their patriarch’s head of the bed away from the wall so they could surround him.
who put on an impromptu display of voice and rhythm that pretty much shattered the myth of white supremacy in the first two notes.

they sang and drummed on various surfaces and kissed his head.
they laughed and cried and hugged each other and arranged his blankets.
they prayed and sang some more and pressed a worn olive wood cross into his palm.
i soaked it all in, all the while watching his chest rise and fall until it didn’t anymore.
they laced arms over shoulders forming a tight huddle around the bed crying and praying and thanking God for his safe passage.

the intern arrived and greeted the family, moving to the bedside to listen for heart sounds. one of the brothers looked at me and smiled – the absurdity of hospital procedure never being more evident.

‘time of death 3:45′, he said with a solemn nod.
i think he learned that from t.v.
and anyway, i beg to differ. i just witnessed the beginning of something – i’m not sure what – i just know it wasn’t an ending.

it was a celebration of life and family and love and of death, unlike any i have seen since.

i want those people there when i die.

from: oncRN

cancer

Just a moment for a real-time report from western Ireland.  We have been traveling with our friends to Traylee, the Dingle Peninsula, Cork, Killarney, Cachel, and today Connemera.  We seem to have brought record-breaking amounts of rain with us.  Roads are closed due to flooding.  The road from Galway back to Dublin may be flooded tomorrow.  This is wild, craggy country with gale-force winds and near-constant drizzle.  We have walked on paths carved out over three milennia.  The people are lovely,  friendly and helpful, but hard to understand at times – is he speaking English or Irish (Gaelic)?  Heading home, somewhat relunctantly, on Sunday.  Take care, Dennis

Journal: April 2002 One day the clinic was very busy, not enough chairs and rooms. Jane, a cardiac nurse with a new diagnosis of colon cancer and a neighbor of Hope, a nurse from my unit, arrived for her usual Wednesday appointment. On this day we shared a pole and discovered that we each like Dr. Pepper. After I finish the Dr. Pepper I said that I had to go to the bathroom and that since she was attached to the same IV pole and was a nurse anyway, that she would have to accompany me. But she made me wait until my CamPath was in and I was no longer connected to the pole.

On this day there were four of us nurses: Hope, Jane, Marie and myself. The staff was very busy that day, treating patients not only in the chairs but in the exam rooms as well. As Jane and I sat getting our drugs, Hope and Marie were passing out candy, helping the other patients, including comforting an older lady who was scared and crying. Cancer nursing, it’s not just a job, it is who we are.

Doug is another friend we met – Doug the “TV man” since he always brought a small TV. When I first met him he told me that he had been there several times when I had my infusion reaction. He said that he wanted to cry for me, he felt so badly for me. Doug loved to talk, he talked with everyone. We discovered that we had a mutual passion for boats and that we only lived a few blocks apart. Doug is about ten years older than I am. He has lung cancer complicated by congestive heart failure. I plan to call him to come over when we begin to commission the Bayfield sailboat this spring after he returns from a long-awaited trip to Florida. Sometimes we try to reward ourselves when a treatment segment has ended. Besides Doug is not doing very well medically and he knows it.

Weeks ago, as I became aware of the other patients and began to interact with them, I noticed an older man who always came to his therapy alone. We were talking to another couple in the waiting room. After I went back to the treatment room, I felt a little bad that we did not acknowledge him though I thought neither did he join our conversation. He always slept during his treatment after his premedication. The next time I saw him, I offered candy and spoke with him a while. We never spoke much as he seemed a quiet and shy sort of fellow. But I always acknowledged him when he came for his treatment. Even though he was at least ten years older, he always referred to me as “Sir”.

One day I asked to take his photograph, reclining in his chair and getting, as it turns out, his last dose of chemotherapy. But he said that he had an appointment to see his physician the following week. I could give him his copy of the photograph on that day. The following week he came back to the treatment area to be weighed. We caught his attention before he entered the exam room. I handed him his photograph. He thanked me and said he wished me well. After twenty minutes Dr. Markham exited the exam room, followed in a few minutes by this man. Marie said later that it appeared to her that he had been crying. His face was red. He walked straight over to my chair and took my hand and said that he had gotten good news – that they just needed to watch things now, no more treatments. He shook my hand earnestly and told me that he hoped that someday I also would get the same good news. I felt it a measure of honor that the very first thing he did after his momentous appointment was to share the news with me. This level of sharing is one of the reasons that I chose and continue to be involved in cancer nursing.

I have thought for a long time that, after working for fourteen years with cancer patients, I understood them pretty well, that I had some idea of what they and their families were going through. But now I have come to understand that my appreciation of that experience lacked an essential existential dimension. Now when I relate to people affected by cancer, it is not only as an oncology professional but also as a fellow sufferer, someone who has been touched most deeply and profoundly by this fearful set of diseases. There is a connection between us that unfortunately cannot be made in any other way.

I am aware that throughout these past one hundred or so days I have never stopped being a cancer nurse. I have never stopped wanting to learn more about cancer, treatment, and research. I have never stopped wanting to continue in what is actually a ministry of sorts. I speak of ministry in a broadly spiritual though not religious sense. The ministry of helping other human beings, of contributing to their welfare, of making a difference in their lives – and in doing so, affecting a profound and meaningful difference in our own lives.

cancer

little things

It’s the little things that seem to shape my life so much these past few weeks.  Little things that vex and uplift.  I first began to consider these little things in the fevered beginnings of my H1N1 infection several weeks ago.  Going to Las Vegas to speak about my leukema and its treatment with Campath was sort of a big deal – the opportunity to meet new people, to make some money, to perhaps begin a longlasting relationship with a pharmaceutical company.  Flying out to and back from Vegas was not such a big deal.  Each of the four segments of my journey was a little thing.  Yet during one of those segments I was affected by another small thing, something minute, sub-cellular even – a viral colony wafting down from the recirculating air duct above my head, right next to my reading light.  The viral colony took root somewher in my lungs and began to multiply.

And so a week later I find myself slumped in a wheelchair, facing the triage nurse in the emergency room of my hospital.  Between coughs I answer questions about my recent symptoms, my medical history, and my current medications.  Commendably I am efficiently wisked back to a treatment room.  My assigned nurse arrives quickly and begins her portion of the assessment process.  Under the cloud of my 104 degree fever, I again answer questions about my recent symptoms, my medical history, and my current medications.  Little things the first time around now growing somewhat tedious.  While labs are being drawn from my right arm and an intravenous cannula secured, someone from pharmacy arrives to review my current medications and, for the third time in ten minutes, my allergies.  Each of these set of questions are little steps in a more complex, and now somewhat unfathomable (to me),  series of processes designed to assure that my symptoms are  accurately and efficiently diagnosed.

Nonetheless when the medical assistant arrives to once more review the data, I am perplexed when she asks “So I see you have diabetes.”  “No” I mutter – where did that comes from?  “Sorry.”  A little later she asks “You’re allergic to phenergan? (a common antiemetic)”  “No,” my wife answers, “he is allergic to fentanyl ( a narcotic analgesic)”.  Each of these incidents are, in themselves, small things.  But their import is starting to build.  Having worked in healthcare for over twenty years, I am frequently in the position of defending our exceedingly complex healthcare system and its practitioners.  But now I am less sympathetic.  I have been out of the system for over five years.  Part of the current national debate about improving the healthcare system involves streamlining and digitalizing medical records.  And yet here I am in my fevered and weakened state, having to steer my way through a potential minefield of medical error.

My symptoms assuaged by morphine, Zofram, and acetamenophin, Tish having left for home a hour before, I am finally ushered up to the transplant floor.  My white count has dropped due to the viral onslaught and so I am put on neutrapenic precautions.  That small thing in itself brings the anxious spectre of relapsed leukemia to my dimming consciousness.  By the time I arrive at my room, my fever is returning.  I commence to shiver and shake.  The rigors increase in intensity as two floor nurses begin their own admission rituals.  My medical history, please.  Symptoms of this current illness.  Medications I am taking.  Allergies – duh!  As the rigors seem to rack my entire body, I feel less and less cooperative with these two women who I would normally regard as colleagues.  They have their admission procedures and they mean to see them through – tonight, this shift.  I can hardly keep my body still.  Yet I am asked to sign three separate documents.  I begin to feel bitter, angry.  What has become of my caring profession?  Obsessesd with procedural etiquette, their focus seems to have wandered from me, the patient.

And then  I feel the touch of a hand on my shoulder.  The nurse at my bedside begins to stroke my shoulder softly. My shaking seems to lessen in intensity.  The other nurse  sorts through her papers, occasionally asking questions.  “Any history of cardiac disease?  renal problems?  mental illness?”  My bedside nurse continues to gently rub my shoulder.  I feel myself sinking.  Finally I feel the courage to tell the nurse with the sheet of questions,  “Not now. please.  I can’t anymore.”  It’s the little things.

Shamelessly offered for sale - anybody interested?

The debate rages on. President Obama is scheduled to address the nation and both Houses of Congress next Wednesday evening. Debate continues among neighbors on my street. Earlier this week Tish and I listened to speakers at a rally at the local university. There was an article in this week’s edition of Newsweek (September 7) offering detailed explanations of the five biggest misconceptions about healthcare reform.  These are “You’ll have no choice in what health benefits you receive;”  “No chemo for older patients;”  “Illegal immigrants will get free health insurance;” “Death panels will decide who lives:”  and “The government will set doctors’ wages.” Note that NONE of these assertions are true.

Unfortunately nearly all of the debate concerns not how healthcare is actually delivered.  Instead most of the debate centers on issues related to how healthcare is to be paid for – a single payer system, private insurance by for-(mega)-profits, competition between government and non-government plans, or any number of sometimes odd mixtures of private insurance, public insurance, and proposed co-operatives.  How our care gets paid for is truly important for it has many implications about who is eligible, who gets left behind, what conditions and treatments are covered, how many citizens go bankrupt due to medical bills, as well as the general health of the citizenry, an issue with national security implications.

But in all this we hear little about reform relating to how care will be delivered, how costs (heading for 22% of GDP) can be better managed, and how we might improve the country’s general health.  As noted last week among industrialized nations, the U.S. spends more than any other nation, have the shortest life expectancy, the highest infant mortality rate, the highest obesity rate, and rising incidence of some cancers, diabetes, and heart disease in women.

Typical readers of this blog have all had experiences like long waits in the emergency room, waits getting admitted to the floor, answering the same innumerable questions each time we visit a doctor or hospital and sometimes several times to several individuals during a single visit.  We have gone to specialists who order tests that we know we have already had performed.  In hospitals we have to guard against being given the wrong medicine or the wrong dose.  We have had to wait to have our call lights answered because of overworked staff.

There is a nursing shortage that will get worse as we baby boomers continue to age.  Something that I  noticed when I practiced nursing – a significant number of experienced nurses traded their nursing uniforms and long, difficult hours at the bedside for a chance to wear nice street clothes, work nine-to-five, no weekends and predictable lunch breaks working for insurance companies, reviewing charts and pressuring physicians to discharge patients.  There are a lot of insurance companies and each needs its own “utilization review” nurses.  That’s a lot of nurses not contributing to people’s health but rather, by extension, contributing to insurance company profits.

In the dentist office last week I came across a March issue of Time magazine whose cover featured an article “So You Think You’re Insured – Think Again”.  A Time staffer wrote about her brother’s medical problems.  He had a $2500 deductible so he avoided going to see a doctor for months for mild but unusual symptoms.  After his primary care physician was unable to discover the cause, the man again put off going to see a high-priced specialist.  He was in medical debt $14,000 before he even had a diagnosis.  Then his insurance company, to whom he faithfully paid monthly premiums, decided that his life-threatening condition wasn’t covered.  The author cited a 2005 Harvard study of more than 1700 bankruptcies.  Researchers found that medical problems were behind half of them – and three-quarters of those bankrupt people actually had health insurance.  As Elizabeth Warren, a Harvard Law professor who helped conduct the study, wrote in the Washington Post, “Nobody’s safe … A comfortable middle-class lifestyle? Good education? Decent job? No safeguards there. Most of the medically bankrupt were middle-class homeowners who had been to college and had responsible jobs — until illness struck.”

I have had two bouts of leukemia, a bone marrow transplant, and a variety of treatment related health problems over the past four years.  I am now in fair health and am even starting to believe I may be cured of this hellish disease.  I have something new to worry about.  As I continue to live and to age, if I do become ill again with the same or even a different disease, could be coverage be capped off.  It is hard to say how much has been spent on my health in the past seven years.  My bill for the drug that saved my life, Campath, alone approaches $200,000.  All those weeks in hospital, all those transfusions, CT scans, biopsies, and hundreds of blood tests probably puts my total on the near side of a million dollars.  How much is a life worth?  I don’t know.  But all that was worth it to me, worth it to Tish, and to my children and grandchildren.

Some balk at the estimated $600 to $900 billion dollars.  Why was there not the same level of complaint at the $1 trillion we have spent on fighting in Iraq?  Why is there always money for wars and never enough for healthcare or education?

As I said last week, I have a more global view of healthcare system.  I have seen the good, the bad, and the excellent in a score of countries.  And again, I don’t pretend to have the answers.  No single person does.  The issues surrounding the delivery of quality care to 300 million Americans are enormously complex, nearly as complex as the human body of which we have just a partial and imperfect understanding.

If doesn’t take a genius to see that we have major problems with our current healthcare system.  But not having all the answers is no excuse not to actively participate in this debate, to study the issues and proposals with critical and inquisitive minds, to write to our Senators and Congressmen, and to demand the best plan that they can devise, that gives the best outcomes to the greatest number of citizens at a cost our country can afford.

cancer

Searching for Answers

Something that I have thought about, and I suspect that many of you have also, is what happens if my cancer should relapse, for me getting leukemia for the third time.  Each time a cancer returns the statistical chances of beating it are reduced.  This happens for a variety of reasons.  My body will be older.  My body and immune system will have been weakened by chemotherapy, radiation, multiple other drugs, and by the disease process itself.  The cancer cells that return (in fact they have never left but remain sequestered in some hidden part of my body) tend to return in strength.  These cells are the strongest, the most adaptable, the most resistant because they have survived all previous attempts to eradicate them.  It’s survival of the fittest at its worst.

This is not to say that I cannot prevail once more.  But it does mean that this battle will be harder than the others.  On the positive side, by now perhaps a new and more effective treatment may have been developed.  Or not.  But what if I do not prevail?  What if the tide begins to turn against me?  What if we reach a point where we have tried all the fighting strategies available?  If I come to the point where nothing is working and the cancer is winning, what do I want my family and healthcare team to do?

Do I want to be admitted to an intensive care unit?  Do I want to be connected to a ventilator?  Do I want to receive transfusion after transfusion?  If I stop breathing,  do I want a team of doctors, nurses, and technicians to rush into my room, start CPR, use a pair of defibrillator paddles to shock my heart into some kind of rhythm again?

Another option at this point might be to remain at home.  I could be with my family, lie in my own bed with my dog at my feet, look out my window at those familiar green trees.  We could set it up so that nurses, chaplains, social workers would regularly show up to assist my wife and family through these last stages.  If I were in pain, I would receive medication.  If I had difficulty breathing, I could be administered oxygen.  If I developed an infection, I could receive antibiotics.  This is what we call hospice.

So there are at least two options.  But the most important point is that I will have decided which option to take.  I will have made that choice ahead of time, made the choice when I was not in terrible pain, when I was not gasping for breath or was no longer able to think clearly.  I will have made my own decision.  My family would be be left with the very difficult decision of what to do next, of trying to guess what I would have wanted them to do.  This is what “advanced directives” or “living wills” are all about.

I have been there.  I have been in both capacities – as someone diagnosed with a terminal cancer, and as a nurse having to carry out those last wishes, whatever they were.  I have worked both in the ICU and in oncology.  Believe me, this is another area in which cancer can be a blessing.  The cancer diagnosis brings us closer to our mortality.  We all have taken pause to consider the possibility, at least, that we may not survive this.  While working in the ICU many years ago, I stood on the sidelines while families agonized over this decision, especially when the patient was taken early and unexpectedly by a major stroke, heart attack, and serious trauma.  For cancer patients our future seems foreshortened and we have confronted the possibilities.

I think we all have a responsibility almost to confront the possibility of losing our battle against the “beast”.  We need to spare our loved ones this potential added suffering.  We need to consider all possibilities.  We need to make our own decision, need to give direction to our oncologists and the healthcare team.

This is just my opinion.  But again I am a survivor and a nurse with twenty years of experiences.  I have been witness to more deaths than most people.  I have seen good deaths and bad deaths.  And my wish for everyone would be a “good death”.

The reason I am thinking and writing about this today is the continued hysteria and misrepresentation I hear related to the healthcare reform debate.  I suppose that I thought after countless clarifications in the media about this particular issue, the debate would shift back to more reasonable aspects of the national discussion.  But just yesterday I saw one young woman at a town hall meeting asking about what she perceived as “Nazi elements” in the reform bill.  Worries about the prospect of euthanasia if the government has any role in healthcare (as if the government did not already administer Medicare and the Veterans Administraion) seem to have developed a life of their own.  And Sarah Palin fans the flames of this hysteria with the talk of “death panels”.  What “death panels”?

The fact behind these fictions is merely a provision on one of the three bills that, if you wanted to make a separate appointment with your physician or oncologist to discuss advanced directives or a living will, then Medicare would pay for it. This is just a discussion between you and the doctor of your choice so that you can make the decision which is right for you and your circumstances.  You can change or alter your decision at any time.  There is no conspiracy here, no Nazi-style extermination plan, no death camps, no death panels, no one knocking at your door.

These end-of-life issues are personal, intimate, and, at times, painful.  It is a disservice to all of us with cancer to have these issues needlessly misrepresented in order to serve questionable political agendas.  The saving grace of the controversy is that it does offer us an opportunity to educate ourselves about these critical questions.  Hopefully in doing so we will discover some measure of peace.

cancer

Isabel and Sophia

As I was reading “The Light Within”, our August Book Club selection, I was struck by just a small anecdote.  The oncologist, Dr. Lois, had just gotten onto the hospital elevator.  She was followed by a nurse, then by an elderly man.  The two began an animated, friendly conversation.  The nurse asked the man about his wife.  He replied “I hope that God takes her today.  I just can’t stand to see her suffer anymore.” The anecdote ended there but the scene struck me as very familiar.  I have been there too…once.

And when I wrote yesterday’s post, I was also moved by author Deb’s insight that “cancer work” is “extraordinary in its engagement with the human drama.” I do miss nursing.  I was at my very best as a human being.  One of the thing that I believed was most important about cancer nursing was a thing called authenticity. Having and maintaining the requisite knowledge and skills is, of course, essential.  But to be an effective healer in the nursing role, you must be able to be in touch with your authentic self. And you must be able to let that authentic self shine through with patients and families.

If you have been reading “The Light Within”, you will have glimpsed authenticity in the physician/healer that Dr. Lois, the gynecologic oncologist, is slowly becoming.  Authenticity, I think, may be described as a merging the professional, knowledgable persona along with the genuinely real and caring component of the person’s personality.  This is different than a caring statement or caring questions that may be affected or, at least, rehearsed, something learned in a textbook or lecture.

For most of you, I suspect, you know authenticity when you experience it.  And that is when trust really happens.  What I am calling authenticity is when you sense that the nurse or doctor really does know you and cares about you as a person, not just the next patient to attend to.  All other things being equal, this is what defines a good nurse of physician.  It is not the same quality as empathy.  Empathetic statements can be learned.  Perhaps it is more like transcendent empathy.

I remember one day I precepting a new nurse.  We entered the room of a man in his late sixties.  When I meet first meet a female patient, I generally ask her about her family.  When the patient is a male, I ask about the type of work he does.  It’s generally how people define themselves in our culture.  This man had been a plumber.  As I was starting his IV, I started kidding with him about plumbers and the exorbitant rates they charged.  This man was very sick.  Soon, in fact, he would be terminal.  As we left the room, the young nurse questioned me about why I was making “insulting and rude” comments to the poor guy.  I told her that I sensed that the man was probably tired of people tip-toing around him, treating him like the pitiable, emaciated shell that he appeared.  Giving him a hard time about the work he did was appealing directly to how he thought about himself before cancer.  Treating him like one of the guys, not like a victim of cancer.

I remember another patient, an elderly woman.  Her daughter was there at the hospital every day.  But each summer on a certain weekend, she would take her two children on an excursion to the theme park, King’s Island.  The kids were expecting to go.  Their mom felt conflicted, not wanting to leave her own mother alone.  I told her I was working the weekend.  Her face brightened a bit.  “Then I feel okay about going.  You’ll be here to watch over her.”  It was one of the best compliments I ever received.  It meant she trusted me.  And I think the basis of that trust was that she saw me not just as a responsible member of the staff, but someone who would treat her mother as if she were my own.

The tricky part for us caregivers, we doctors and nurses, is to let a little of ourselves out and let a little of the people we are caring for in.  But doing so means letting hurt in.  So it becomes a gentle balance, letting hurt in without toppling.  We have to return to our cancer work the next day and the day after that and on and on.  So we learn to carry the hurt like medal.  We keep the pricks from being stabs.

You all have known many doctors, nurses, even housekeepers.  How did you learn to trust?  What drew you to your favorite doctors and nurses?  How did they help make your ordeal more endurable?  I would be very, very interested in hearing your insights, observations and stories.

Take care, Dennis

cancer

Working Hard

I officially started this blog in February although it was conceived much earlier.  A year ago I proposed to Tish that I buy a new computer.  Partially because it was my birthday and partially because I was ready to launch a new project, one of many in my life with some succeeding and quite a few failing.  It was also another period where I felt the need to redefine myself yet another time.  There was a yearning.  Yes, I did daycare for my two lovely granddaughters and that in itself was meaningful.  And yet there was a yearning on my part for something more.

My life before cancer was quite active.  At the hospital I was working to improve my knowledge and skills, becoming a better person and nurse.  The interactions that I was having with patients and families were rich and full.  Some of the most memorable moments of my life have been spent at the bedside.  And if that were not enough (and it was), I had been given the rare opportunity to be involved in fighting cancer on an international level.  I was teaching and conducting educational courses for cancer nurses in developing countries.  I was a project chair for the International Union Against Cancer (UICC) in Geneva and also organized nursing courses for the National Cancer Institute (NCI) in Washington.

Then came leukemia and my life took its inevitable detour.  Like many of you though, I wanted to turn this tragedy into something positive and I turned to the Internet.  It started with emailed journal entries to keep friends and family apprised of my progress.  Because of my professional associations around the globe that email list grew rapidly.  I soon found that people were sharing my journal entries.  College professors were assigning it a readings in a variety of courses.  Like many of you I began to receive emails of encouragement and support from people I didn’t even know.  People found something of value in my writing.

During my first remission I was at a reception at the annual meeting of my professional association, the Oncology Nursing Society (ONS).  Amid the food and comraderie was born the idea of publishing my journal online on the Society’s website.  The story of cancer of a cancer nurse.  At the time, in 2002, I was doubting that I would live to 2005.  Published research supported these doubts.  The longest-lived T-PLL patient survived 60 months.  So the journal was to be my legacy.

But life always proceeds according to its own plans.  I did indeed relapse after 26 months, but achieved a second remission and took the risk of consolidating that with a stem cell transplant.  I went through a lot – multiple infections, the loss of vision in one eye, chronic fatigue, the loss of the sense of smell (I am an avid gardener) and of taste (I am an enthusiastic cook) – but most importantly I was still alive.  I was allowed to witness the marriages of my children and the birth of grandchildren.

Returning to work remained a risky and distant proposition.  I seemed destined to disability or, at least early retirement from the profession I loved.  Left to my own devices, my naturally introverted self became less and less engaged with life and people.  I was adrift in my own wilderness.  And thus the necessity of redefining myself.  I needed to get back into the world.

All of this is prologue to the post topic.  Last August, my birthday approaching, I argued for buying a new computer, an iMac like my son’s with a 24″ screen to augment my diminished eyesight.  I wanted to create one or more blogs.  One for networking those transformed by cancer, and maybe one for networking healthcare workers in developing countries, a repository of stories and best practices.  I argued that with a large enough readership I might be able to carry appropriate advertising which would eventually pay for the computer and for the cost of maintaining a website – domain name, software, hosting server.

Last week I logged 10,000 visits to the site from its inception.  This week we are already approaching 11,000.  So now the question arises should I monetize a blog dedicated to building and strengthening a community of cancer victims?  Should I solicit advertising?  Most blogs on the blogroll are “pure” in this respect, seeking only to share and support.  But 10-15% do include advertisements.  Most of the time these ads are cancer related.  Most of the time these cancer ads are unquestionably legitimate.  Most of the time these ads do not detract from the aesthetics of the site design and presentation.

But I am interested in your, in the readers’ reaction to this.  What is you opinion about ads on cancer blogs?  I intend to exercise control over the type of ads.  They must be cancer- or blog-related.  No snake oil or fish oil miracle remedies.  No blog redesign resembling a billboard.  No flashing banners to distract from the serious or not-so-serious content.

The other thing is this.  I must confess to something personal.  Aside from the obvious rewards of being in a helping profession was something more practical.  I earned a living.  I worked, was rewarded, and contributed towards family goals and the family’s future.  When a new appliance was needed or tuition was due, I worked overtime.  The long hours, the double sifts were hard but I could see what I was working for.  I have not worked in five years.  I get disability checks.  They are smaller than “real” paychecks but that’s not such a big deal.  They are abstract.  They are not related to anything I “do” now (though, again abstractly, I relate them to a lifetime of labor).  There is little satisfaction in abstraction

Nobody ever made a fortune, or even a living probably, writing a cancer blog.  But I would like to be able to say that my work on the blog is valuable enough to pay for my monthly server fees, to eventually pay for my computer and office equipment.  I would like to be able to feel productive again in the financial sense, to be actively contributing to the family treasury.  And if the blog started to come a positive rather than a negative to our cash flow, I might not feel guilty about spending even more time adding and improving features.  But income or not, I plan to continue Being Cancer.  Hopefully there is a need, hopefully it can make a difference. Take care, Dennis

being cancer?

I have had a number of discussions lately contending the title of this blog – Being Cancer.  Some readers contended it, so did some family. The core of the argument is that cancer should not be allowed to define a life.  So I thought that it might be a good idea to go back and reexamine the words that I chose to portray the idea behind my blog.

In my very first post I spelled it out: Now before my diagnosis I thought of myself as a husband, a father, a nurse.  But since the profundity of my cancer diagnosis all that has become somehow secondary to the thought “I have cancer”   I am cancer.  So “being cancer” became the central preoccupation of my life.  It has pervaded everything, it has affected nearly every facet of my life – mentally, physically, socially, emotionally, spiritually.  It is a constant struggle, a tug-of-war between hope and desolation.  And now nearly five years from any sign of active disease this old theme – being cancer -still haunts.  I suspect that for many persons with cancer, and perhaps even for those caring for persons with cancer, this theme of “being cancer” resonates loudly.

Should cancer be allowed to define a life? or, to put it more personally, should you allow cancer to define your life?  Certainly we all have a choice.  How much will my life be affected (transformed) by my diagnosis?  If my experience is like many of your, cancer came like a locomotive, like a hurricane.  It rolled in and over everything.  It disoriented our lives.  It scattered our dreams.  In those first weeks our lives lay in ruins.  How much will our life be transformed by cancer?  We have a choice but how much of one?

In certain inexorable ways our range of choices becomes more limited, or, at least, more focused.  We are now on a different trajectory than we were before diagnosis.  We may or may not make it to the same goals, the same dreams.  But the paths we follow must be different.

“Being cancer”  It may be just a semantic issue.  But then there is that real question of attitude.  Once we reel from that first great cancer punch, how long will it take us to get back up?  How effectively and with what degree of conviction do we fight back?  Attitude can and does make a real difference.  And yet we do not want to suggest the cancer victim bears the primary responsibility for whether he or she wins the battle or not.  As an oncology nurse I have seen scores of strong, committed, courageous men and women lose the war not matter how fiercely they fought the battles.

“Being cancer”  To approach the semantic issue from another angle, cancer is not like an infectious disease.  Being infected means being attacked by an-other, by some organism foreign to ourselves.  Bacteria, viruses, fungi are the enemy from without.  In cancer the enemy is from within.  The enemy is ourselves, our distorted selves at a molecular level.  Our cancer cells are our own cells gone mad – unrestrained, uncontrolled, and dysfunctional.

“Being cancer”  No, my cancer does not define me, does not control me.  And yet, especially in the beginning, it did pervade my life.  It set me on a detour. It took me long way off course and it took me a long way to find my way back.  In fact, in some ways, I was lost before.  And now, since cancer, maybe because of cancer, I am found.

The subtitle of the blog refers to being “transformed by cancer”.  Transformation suggests the positive aspects of illness.  Having cancer, having become cancer has guided our lives down previously unseen, unappreciated byways.  Was cancer a blessing then?  Well, maybe, but one I would rather not have had.  I might have taken my chances in finding the right path.

“Being cancer”  No, I am not my cancer and my cancer is not me.  But it left a scar, a scar that will not go away.  Hopefully I am better for it.

Site-news: I have been busy.  I have added about 65 links to the Cancer Resources page and about 20 new links to the Cancer Blog Links page.  I finally published the new Being Cancer Book Club page.  I anticipate amending this as we learn what works and what doesn’t work regarding the book club.  This is the page where you can find out about the current month’s book as well as a list of past books.  I am having technical difficulty making the Amazon link for “The Last Lecture” appear in the margin.  I also started the Cancer Book List page.  I am anxious to hear recommendations from you, especially from those bloggers who have written their own books.  Finally I have added to the About this Site page to include the new posting “schedule” – Monday Book Club, Wednesday Guest Blog, Friday Cancer News Round-up.

Sophia

Missing Nursing

It has been over seven years since I last did “floor nursing”, that is, bedside nursing in a hospital.  I worked on the oncology unit from 1987 to December 4, 2001 – the day I left work to see my regular doctor about the mass I discovered in my lower left abdomen, what the CT scan would reveal as a massively enlarged spleen due to my leukemia.  Except for three years I spent as manager, I always worked at the bedside.

On Sunday night I noticed that my fingers and arm seemed slightly enlarged.  A 250cc antibiotic “piggybacked” into the main line had just finished.  I set my call button and waited for my nurse, Anissa.  When she arrived I showed her my arm and asked her what she thought.  “Looks like it might be starting to infiltrate” (fluids leaking from the vein into the tissue).  We made a joint decision to run the second antibiotic at a slower rate and then reassess the site.  A very simple and, for me, very familar interaction.  I tell her that I miss nursing.

In many ways I was at my best as a human being when I was nursing.  Normally a quiet, somewhat introverted person, in my role as a nurse I seemed to blossom over the years.  I became comfortable in those quiet, personal moments of tragedy and hope.  It is a special privilege to be a nurse, especially an oncology nurse.  You are a lead actor in some of the most dramatic moments in a person’s life.  Some of your most human of memories are those at the bedside.  Snow falling outside, or sunshine.  Late at night or early in the morning.  Alone with your patient or out in the hall with the family.

I miss nursing.  I miss being able to access a port or a peripheral vein on a difficult to access patient.  I miss doing a dressing change on a Hickman or PICC because it gives a patient the opportunity to talk to me about some small fear.  I miss teaching the family, deconstructing the technical explanation that the physician offered before he left the room.  I miss distracting my patient with jokes and small talk as they endure yet another bone marrow biopsy.  I miss creeping into a room at night with a styrofoam cup covering my flashlight so as not to disturb the sleeping patient.  I miss struggling to decipher the doctor’s Progress Notes so that I can put the patient’s orders and history into some meaningful context.  I miss the satisfaction of noticing some early sign of a change in condition or an oncologic emergency, saving the patient from “crashing” later.  I miss being able to touch the shoulder of an unconscious patient.  I miss it when the wife of my patient says “because I know you’ll be taking care of him on Saturday, I will go ahead and take the kids out of town to King’s Island like I promised.”  I miss being stopped in the hospital cafeteria by a person I don’t recognize because now they have hair and have gained weight and are in a solid remission.  I miss being the only one my patient will let me see without her wig.  I miss passing popsickles out to my patient’s young children.  I miss drawing little pictures on the edge of the Port dressing.  I miss visiting a patient in the ICU after I kept them from nearly ‘coding’ on the oncology floor.  I miss helping a man celebrate his daughter’s wedding in his isolation room.  I miss being there on the day of discharge when my leukemic patient has been there for over a month and has gone through some close calls and now is going home to his family with a “clean” marrow.  These were all good times to be a nurse.

I miss sitting in the room of my patient who just died.  I have cleaned up the body, removed the oxygen mask and IV line, put on a new gown, changed to top linens and made sure that his arms are arranged naturally and outside the linens so that the family can hold his hand when they arrive.  I sit in a chair at the end of the bed to catch up on my charting.  It is as quiet and as peaceful as a church.  This was a “good death”.  This also was a good time to be a nurse.

My day nurse is named Alyssa.  She is new, less than six months on the floor.  I quiz her throughout the morning as I always did with new nurses.  Gentle teaching.  I miss nursing.  When Tish arrives to pick me up, I ask Alyssa how many patients she has.  “Four” she replies.  No, I said, how many in this room.  She looks back at me questioningly.  “One?”  No, I say looking at Tish, you have two.  The family is always your other patient.  Her eyes widen a bit and she nods.  She pushes me in a wheelchair down to the car.  At curbside she tells me she is glad that she had me as a patient.  And I tell her she will be a good nurse.  It was a good day to be a nurse, even a retired one.

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