Pain and Waiting

The weather here in the midwest has been perfect.  The garden calls more loudly than the computer so no new entries and no work on my cancer blog links page.  But I have felt tired and sleepy the last few days, causing my mind to question again – anemia?  My clinic appointment is still a ways off.  Also I noticed a large bruise on my leg – thrombocytopenia?!  Well, I’ll not worry about it.  I’ve been doing heavy work in the garden after, a perfectly logical, likely explanation.  Still …..

Journal – December 2001

~ Pain and Waiting ~

Now I know why they call us patients.  It’s because we spend so much time waiting that we have to have patience.  We wait for appointments with doctors; then we wait in their offices to see them.  We wait in line to have our labs drawn; then we wait for the results.  We wait to have tests scheduled.  We wait in pre-op registration, in the Same Day Surgery lobby, in the pre-op cubicle, wait for the registrar, the nurse, the transportation tech, the surgeon, and finally the pathologist.  Waiting for pathology results is the most difficult yet. What specifically is wrong with my body? Where exactly has it failed me?  We cannot move to the next level until we have the results of the node biopsy.  And we cannot begin treatment until we know the answers to all of these.  I am in limbo.  My family and friends are in a state of suspended anxiety.  But I am patient.
When I get home from the oncologist’s consult, I have a call from his office. They have scheduled another consult with a surgeon on Monday morning.  So it will be a long weekend.  My fever arrives faithfully in the early evening – 99.8, never higher.  Sometime that night I am aware of increasing vague discomfort in my belly, broken only by occasional sharp, stabbing sensation in my lower left abdomen.  This pain gradually increases over the weekend, becoming more constant and more persistent.  I start to treat it with 1000 mg acetaminophen, Tylenol, though not too often as I do not yet know if anything is malfunctioning with my liver.  The pain seems positional, increasing whenever I move.  At times I grimace and clutch my side, somewhat embarrassingly.
Monday morning I feel exhausted, overwhelmed and depressed.  I tried to do too much on Sunday but I don’t regret it.
I drive to Tish’s office, which is only 5 blocks from the hospital.  We go in her car to Methodist.  We meet the surgeon, Larry Micon.  He does a short interview and exam, especially of the inquinal nodes – one is quite large.  He agrees that we need a biopsy as soon as possible.  When he asks, I tell him that
No, I am not nervous and don’t need any medication outside of the local anesthetic.    We get a surgery suite reserved for 2:30.  Larry says that I can have a Pepsi to drink– I am parched.  It is only 11:30 so Tish and I go to the cafeteria.  We both like the surgeon.  She asks me some medical questions.  I know the answers to some of her questions, but not to others.
We go to the information booth and ask for directions. The lady asks for my name and then refers to various printed lists on her clipboard.  Then she makes three or four phone calls before finally sending me down the hall to outpatient registration.  There I wait in line until my name is called.  The girl at registration is pleasant but also has to make several phone calls in order to figure out where I am to report.  I am ready to have her call the surgeon’s office since they obviously know where the procedure is being conducted, when she finally figures out that I need to go to Same Day Surgery.  Reporting to Same Day, the receptionist again consults her clipboard and cannot find my name and she begins her own series of phone calls.  It finally becomes clear that my case is in that netherland known as “add-ons” – unscheduled procedures that have been added on with short notice.
My name is called and I am led back to a cubicle.  The nurse, Irene, is nice and begins her pre-op assessment.  We go through my medical history quickly as I essentially have none.  She is ready to go through just as quickly the question Have you been out of the country in the last 12 months?  The flow of the interview is halted as I begin my listing of my last six trips abroad.  But she decides to interrupt me and to proceed to the next question.  As she places the ID and allergy bracelets to my arm, I recognize this as another rite of passage from personhood to patienthood.  After that of course comes the next rite of passage – the all too familiar patient gown.
About 2:40 we pressed the call light.  We share a funny paranoia, based on the day’s confusion at this hospital, that my surgeon was in some other part of the building waiting for me to arrive.  Another nurse answered the light and said that she would check.  Twenty minutes later Tish went to look for her as she had not returned.  That nurse had passed it on to my nurse who had not gotten around to checking yet.  I still do not know what happened actually but about 3:30 the nurse came to tell me that Same Day was really busy and that they decided to move me to an Outpatient Surgery section back in the Professional Building.  Ten minutes later I was on my way, down to the basement through endless hallways, across to the Professional Building, up to the first floor then around the corner to Outpatient Surgery.  My first ride on a hospital cart.
I talked with the nurses in surgery.  I knew one nurse slightly as she once worked at my hospital.  The doctor arrives.  Yes, he uses sodium bicarb to cut down of the sting of the lidocaine.  I am connected to a blood pressure monitor and another machine that monitors my heart rate and oxygen saturation.
Are you nervous? the nurse asked. No, why?  –  Because your heart rate reads 240!  –  I reply Now I am nervous! It’s just a bad reading.  Next she attaches the electrodes for the EKG monitor.  Then she apologizes as she wraps something cold around my ankle. What’s that? I ask her. Just your electrical ground for when the doctor uses the Bovie. So I tell her I’m going to stop asking you questions.  They strap my legs down but leave my arms free so long as I don’t move.  The nurses stretch a drape across my chest so that I am not tempted to rise up to see.
The surgeon injects the lidocaine (it burns even with the bicarb!).  After it takes effect, he injects more into the deeper groin tissue. I have a sensation of cutting but not pain later so he injects more.  I feel as if I am fairly relaxed but then I notice my upper body tensing up several times.  We talk throughout the procedure.  I tell a few physician jokes.   He asks me if I want to see the node –
yes – a pink fleshy piece of tissue about the size of a little finger.  It is 2 or 3 times as large as it should be.  And yes it is unnaturally rubbery.  But Larry declines to speculate on the significance of that.  Only pathology will yield the answers.
I scoot from the table to the cart.  Back in post-op I transfer to a recliner. The recovery nurse gives me water, crackers, instructions and a Lortab tablet, a mild narcotic analgesic.  After another 15 minutes Tish helps me dress.  I can actually walk pretty well.
Tish and I have had this discussion all day about whether I should drive my truck back home from her office.  I suggested that we wait and see.  Now I decide to try it.  Tish is still hesitant as I have to lift my left leg out of the car – it’s a bit tender.  I climb into my truck, buckle up, and start the engine.  When I look up, Tish is gone.  I am gratified by her sudden confidence in my ability to drive by myself.  I arrive home a few minutes before her.  Where was Tish?  She has been distracted by everything going on in our lives.  About halfway home, she suddenly realized that she had driven off without me.  So she pulled over to the side of the street (during rush hour traffic) and waited for me to pass, hoping that I was taking the same route home.  I did not notice her but she sees me and follows me home.  It gives us something to laugh about – then and now.  The tale will become woven into the fabric of this story of my illness.
Nothing to do now but wait.  Longer than we were supposed to, longer than we were prepared for.


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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Pain and Waiting — 6 Comments

  1. Thanks Dennis. I think Blood Cancers are hard for others to understand. Someone shared the article with me. So I decided to share. I have NHL /Small Lymphocytic Lymphoma b cell. My dx was in 97 as a stage 4. Due to bone marrow involvement. My situation was that it was a mix of b cell, small cleaved , mucosa/malt, follicular and mantle cell. My surgery was to the parotid area in the left side of the face the above was found.Like my surgeon said that is
    a rare place to find it. However had my primary really looked at my blood panel it was there.

    Bad situation no donor available for transplant.
    So we opted for for a clinical trial at the time.
    Of Fludarabine. That gave me partial remission.
    Till 2000 when they we did a I think Palcitaxel (sp) and it was stopped because it sent me to isolation on to many times. In 2001 I found an area on the skull that they would not do surgery for. So I had Radiation low dose to that area. Then it was one of those things more testing showed an area near the bowel and pancreas. So they did Leukine with Rituxan as I wrote about I have been stable since. They told me if I was lucky hopefully a 24 months then they would do the Ritixan again. But now they say if it comes back due to the length of time they could use both again. So though not easy possible.

    I will be back to read your story. Thanks for the link.

    Kerry

  2. Dennis,

    When you signed my guest book you neglected to leave your blog address. I appreciate your support.

    I’ve added myself as a follower of your blog. If you would consider doing the same, I would add you to my followers blog roll on the left side of my blog.

    Look forward to reading more …

    Daria

  3. Hi Dennis,
    I am so happy that you returned to my site – I tried to comment on your blog before, but was unable to. Also wanted to sign on as a follower but couldn’t do that either. I am glad that all systems appear to be go now!

    I am really grateful to be connecting through blogging. Take care Dennis! I am anxious to follow your progress!

  4. Hey Dennis,

    Thanks so much for stopping in, on my blog!

    So you like the verse form thats cool, I am glad.

    Hope to see ya around more, oh and thanks for adding me to your blog roll.

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