02 – Week of Waiting

Okay, it’s the weekend and I am scheduled to work at the hospital. There is no need to panic. One of our surgeons is seeing a patient on our unit so I ask him to examine my abdomen.  There is no mistaking the “fullness” as it is clinically called.  He says I need a CT scan – he would like to have it done today.  Okay, so now I am a little panicky.  I tell him I need to see my primary care physician.  My insurance has contracted with a different hospital, Methodist.  I cannot have any testing done at Community Hospital unless I pay for it myself.  And CT scans are not cheap, probably around $1500.  As I work through the weekend, I am even more aware of how tired I am.  Could my fatigue be due to something other than aging and hard work?  On Sunday night I am sitting in front of the television.  Aaron, my youngest son, tells me that I look terrible.

My wife, Tish, is out of town, having driven her parent’s car to their little winter home in Florida.  She is planning to stay on for a few days holiday.  She calls me at home on Sunday night.  I sound funny?  No, everything’s all right.  I’m just tired from the weekend. I saw no reason to alarm her.  There is nothing that she could do.  Cutting her holiday short and flying back home early made no sense at this point. What would I say anyway?  I found a mass.  I am going for tests.  She should come back and be anxious and wait with me? No, better to wait and see what we are dealing with.  There will be time enough to wait and worry together – if that is how it turns out.

Early Monday morning a GI doctor, a colleague of mine, shows up on our unit to see a patient.  I ask him to take a look.  He agrees with the proposed CT scan and concludes after a more thorough abdominal exam that the fullness is an enlarged spleen.  I call my primary care physician and grab an 11:00 appointment.  The other nurses volunteer to watch my patients.  Tom Moretto, my doctor, agrees with the proposed CT, and as soon as possible.  By the office scale I have lost 6 pounds since September.  We also draw some blood – a complete blood count and metabolic panel.  By the time I return to work, I receive a telephone call informing me of a CT appointment for the next day, Tuesday. The rest of the day drags on as do I.  By evening I feel incredibly tired.  One of our new RNs notices a rash on my arms.  My temp is 99.4 – my baseline is 97.4.  I go home and sleep for ten hours.  It would never occur to me that this will be my last day at work in months.

I have to go to an outpatient diagnostic facility on the other side of town because it is the only one that can get me in today.  I realize that this is my first day as a patient.  But subconsciously my persona is still that of a clinician.  I drink three big glasses of contrast medium – sweet but bitter at the same time.  Is it just my imagination or does my abdomen feel incredibly full?    I sit in the waiting area, watching afternoon television.

Then I am called back.  I talk with the technician – I think my left AC (antecubital) has a good vein.  Actually my friends and I checked both arms yesterday.  I have lots of good veins – right now.  Is that an 18-gauge needle you are using?  Wow, this is kind of interesting! All this clicking, the revolving sounds.  But what will the scan reveal?  What is it seeing, seeing deep inside me?

I am more anxious than I thought I would be.  I decide to rent a movie, stopping at the grocery to buy a frozen pizza.  I have not eaten since supper at the hospital the evening before.
Later I go home and try to keep busy.  On the Internet I look up “spleen,” “splenomegaly” and “splenectomy”. I call friends from the local Oncology Nursing Society chapter.  Who can you recommend as a surgeon?  I don’t even think about asking for a recommendation for an oncologist.  Maybe I am not ready for that.

Tuesday is a long night. My mind starts to wonder.  The spleen is not my big problem.  My biggest problem might be what’s causing it.  I focus again and again on the differential – lymphoma, leukemia.  But there are other possibilities – viral infection, malaria.  I have traveled in the developing world and once came down with thyphoid fever.  Maybe it could be something like that.  At 2:00AM  I take a sleeping pill.

If Tuesday was long, Wednesday is even longer. Last night I called the unit to check on staffing.  We had too many nurses scheduled for Wednesday so I decided to take the opportunity to be off.  I can’t concentrate anyway.  A couple of my Methodist colleagues return my phone calls.  By the way, what about an oncologist?  Who would you recommend, I mean, just in case? My doctor’s appointment is not until 4:30.   Maybe they will give me my CT films to take to my doctor, or maybe even to my new surgeon.  Why do I get a sharp pain in my lower abdomen whenever I take a deep breath? I call and make an appointment to get a haircut.  Don’t want to get caught in the hospital with bad hair.  What am I talking about!

After the movie I leave for the CT clinic to pick up my films.  The sun is bright.  The day is warm.  Maybe this is something innocuous after all.  I really feel too good today, driving down this sunlit road, to imagine that I might be seriously ill.  At the clinic I give my name and they hand me the large manila envelope with my radiology films.  Back in the car I decide to glance at the films even though I doubt that I can read them.  Two typed pages fall out – the radiology report.  I sit staring at that report for long minutes: “Impression:  Massive splenomegaly.  A hematologic abnormality be it leukemia or lymphoma must be considered in the differential diagnosis.”

In a daze I drove across town to my doctor. Dr. Tom had spoken with the radiologist late the evening before, insisting on a reading as soon as possible.  He was starting to worry about me because he assumed that I would be there for a morning appointment.  We talked briefly about splenic rupture and splenic infarct.  He showed me my labs.  White blood cells 27,000 – 78% of those lymphocytes (both too high).  Platelets only 69,000 which explain those bruises everyone kidded me about over the past month.  Tom said that he was leaning toward a non-Hodgkin’s lymphoma.  I needed to see an oncologist as soon as possible.  I had the name of the oncologist, Raymond Markham, that I had selected after consulting with my cancer nursing colleagues who practiced at the hospital that this oncologist was affiliated with. I told Tom that I needed to wait until Tish came back tomorrow afternoon.  I left the office and had trouble finding my car in the nearly empty parking lot.  I never lose my car, not before this.

Still in a daze, I drove to the library.  I took out a lot of videos.  There’s way too much on my mind.  I needed diversion.  I stop at the grocery because for some reason the idea of clam chowder sounds wholesome and warm to me.  I have not eaten much this week.

I get home and my youngest son, Aaron, runs out to tell me that he has had three calls from doctors in the past 10 minutes.  Two from Tom, our family doctor, and one from a new doctor who told him that I have a Friday morning appointment.  Aaron is getting ready to leave for a four day National Catholic Youth Conference in downtown Indianapolis.  He had noticed on Tuesday the bandage and cotton ball on my arm.  And he now realized that I had taken the day off from work.  I have not thought this through and vaguely worry that I may be in the hospital by the weekend, before he returns home. Immediate hospitalization is often the case for leukemia patients.  So I sit Aaron down on the front steps and tell him that I might have a type of cancer.  I start to get tearful which I did not want to do – not now.  I regain control.  I tell him to pray for our family during his retreat.  Then I send him off.
As soon as they drive away I worry that I have made a mistake in telling him like that.  I try to call out to them as they back their car into the street.  I want to tell Norma, the group leader and our neighbor, what was going on and what I had told Aaron.  But they do not hear me.

Working as a cancer nurse is special.  I particularly like to work with leukemic and lymphoma patients on the “Protective Environment Unit” on our floor.  Over the years I have helped many new patients through their first anxious days.  I have stood by them, watched them flourish or fail. They are discharged after weeks of hospitalization and are there when they are readmitted with fever or relapse of their disease.  Occasionally I visit our patients on the Critical Care unit where they are sometimes transferred when their organ systems fail and crash.  Many of these patients are my age or younger.  They are single mothers or young, married mothers and fathers, or patriarchs or matriarchs of great devoted, sometimes dysfunctional tribes.  Too many of these patient-friends eventually die.  We are there for that to.  I sometimes attend funerals. One summer when I was in London in a cyber-café I read a sad e-mail message sent by a colleague about the death of a favorite patient, a young woman with acute leukemia who we had sent for a transplant at the university.  So sometimes I feel the need to cry from this occupational sadness.

I have accumulated many wonderful stories over the years.   Once there was an elderly lady  admitted to our unit for symptom management.  She was not someone familiar to us.  Some patients and families we have an opportunity to know over months or years even.  But not this lady – she was new to us.  I became acquainted with her two grown daughters.  She was a nice lady but quiet – nothing particularly special or outstanding.  The shift report on Saturday morning was that she seemed to be getting weaker.  She had end-stage cancer though that is not why she was admitted.  She had a “Do Not Resuscitate” order.  Her vital signs were a bit lower than usual – something to watch but not to be alarmed about.
My LPN partner checked on her again at mid-morning.  She was not as responsive as earlier and her vital signs now were markedly lower.  The LPN called me in and I concurred that she was actively dying.  I went to telephone the daughters.  The other nurse stayed in the room, holding this lady’s hand. I got no answer from my calls.  I checked on our other patients, then tried to call the daughters again.  I went back to the room and told the other nurse, who was stroking the lady’s hand, that I had been unsuccessful at locating the family.  She suggested that if everything was okay with the other patients, she was going to stay with this lady.  About ninety minutes later the daughters arrived on the unit.  They had gone to the public library book sale to buy some novels for their mother to read.  I took them aside and told them of their mother’s deteriorated condition.  I walked them down to the room.  They went inside and spoke with the nurse a few moments.  She gave them each a hug.  Only then did she let go of this lady’s hand.  She came out to help me to continue to care for our other patients.  We could not let that lady die alone in that room on a dreary Saturday morning.

My wife, Tish, was still in Florida until the next day.  I sat on the screened porch.  It is an unseasonably balmy evening for December in Indiana.  The wind is blowing through the now leafless trees.  Periodically I seem to notice how incredibly beautiful and fresh the night seems.  I imagine that already I am starting to see the world differently, that I am experiencing things anew and with great intensity and a newfound sense of appreciation.

I drive to the neighborhood video store and rent “Planet of the Apes” not because I was dying to see it but because it is the most non-reality based, escapist movie that I could find.  By 11:00 PM I am able to reach my neighbor,Norma, at the hotel downtown.  I tell her what is going on with me and what I had told my son, Aaron.  She promises to talk with him in the morning.  The movie is over.  For one hundred and eighteen minutes I did not think about my cancer.  It’s almost midnight.  I feel better, I feel exhausted, but I cannot sleep.
Tish flies in around noon tomorrow, Thursday.  I had consulted with several women friends about the idea of waiting until Tish arrived home before I told her about the events of the week.  I really wanted her to enjoy her holiday.  I knew that after I told her that I might have cancer, that her life too would never be the same. If I called her tonight, she would not sleep.  I could not imagine that night how many friends I have and how much support would soon be offered to me.

I know that I cannot sleep.  I try to quiet my mind.  This can’t be true.  It can’t be.  This can’t be happening to me.  What’s the reason? Why would it happen?  Why would it happen now – I’m only fifty-four.  Why me anyway? My clinical mind answers: But this can be true.  This is exactly how it happens to everyone with cancer.  It’s never anticipated.  It’s never fair.  And there seldom is a reason. At 2:00 AM I take a sleeping pill.  I sleep somewhat fitfully.  Each time I stir and start to awaken, a single word comes floating to the surface – “cancer”.

Comments

Comment from Renita
Time April 11, 2012 at 11:42 am

I am reading this, and am so deeply engrossed that I can hardly work. I’m so grateful that this was shared.

Comment from anjana temple
Time May 2, 2012 at 11:47 am

when my brother was first diagnosed with cancer every time I woke up I saw his face in my mind and the word cancer. It was very aggressive cancer of the lung, he had never smoked but he was an industrial chemist in india, where it is common to be exposed to carcinogens as health and safety are non existent. I thought of it all the time, it was , like always there, till his suffering ended. It took me such a long time to accept it.
Reading your account just brought it all back so vividly. My younger colleague at work was diagnosed with T-PLL yesterday. I wish you all the very best.

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