New cancer, week one

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I just reread my previous post.  Boy, did I leave it on a somber, teasing note.  I suppose we would call this post-op day # 8.  I am in the waiting and recovery mode.  The surgeon minimized the discomfort that I might feel – “maybe just a stiff neck” he said.  The pain hasn’t been that great, just nagging and persistent.  I rate it at a 4-5 on a 10-point scale.  Today is the first time I did not have have to take a pain pill when I got up.  Using I have been taking one pail pill3 to 5 times a day.  The pain seems to wander as the blood inside settles in various areas due to gravity.  Wherever it has settled, it feels tight and hard.  Much of my face still feels numb to the touch.  No feeling at all on the outside, definite pain lurking beneath.  It is my ear that gives the oddest of sensations or rather oddest lack of sensations.  It is so oddly shaped, especially now since it is swollen.

I generally sleep on my side, my right side.  So sleep, at least comfortable sleep has been difficult.  For the first few days I daren’t lay on my favored side –  too painful.  I tried sleeping on my back, a technique that seems to work better in hospital than at home.  I have trouble hearing on the right, due to the swelling.  So sleeping on my left side tends to drown out sound – generally a good thing, except when Tish is trying to talk to me.

I sometime feel a little uncomfortable when I am out, with small children running away, screaming in horror and that sort of thing.  Actually it is not that specifically noticable until I point it out.  The area is gradually changing color, progressing to a darker and darker shade of red.  There is an oblong streak of red, creeping down my sternum as if wanting to meet up with my vertical abdominal scar left over from pancreatic surgery last fall.

I have been taking naps in the afternoon.  Lately I have been working in the yard a little, pruning rose bushes.  This is steady, low impact, low energy work.  Except for the bend.ing over, my body might not notice it all.

I found out my surgeon only gave me a release from work for two weeks.  I also found out that FMLA denied my request because, due to my six weeks off in the fall for surgery, I have not worked 1250 hours in the past twelve months.  All that means if that IU Health is not obligated to hold my position while I am off work.  My position was in a state of flux anyway.  We moved out clinic from the hospital to the cancer center.  More isolated there I can not work later in the evening.  Coming in much earlier it difficult because my mother lives with us and needs pretty much constant watching over.  But I am not worrying about my job now.  I am past retirement age.  And this may be one of those points in your life at which you need to redefine yourself.

Next week should be interesting.  Monday is my 2 week surgical follow-up.  My surgeon is out on spring with his family.  So we are meeting with a partner.  Maybe he will be more talkative.  After all, I do have CANCER and we haven’t talked much about that.  Monday we hope to give a name to a specific diagnosis.  What type of several possible cancers is this?  How aggressive is my type?  What will the treatment recommendations be?  We know that most tumors such as mine require follow-up radiation.  In some cases chemotherapy is also suggested.

It is hard to do much in the way of homework with the pathology results.  But I have identified a radiation oncologist with more experience that most in head and neck cancers. So I have an appointment with him on Tuesday after own Monday meeting.  We did this mostly out of impatience with waiting 2 weeks for the surgeon’s recommendation.  Probably more important is the need to regain a sense of control over life and disease, to try to take back my rightful place in the driver’s seat of my life now under assault.

Two experts in the field have given me the same advice.  Advice that I asked for but did not welcome as it brought with it a sense of gloom and general seriousness.  The advice is to consider proactively having a G-tube or gastrointestinal tube, surgically placed in my abdomen.  This is not a big surgery as those things go.  But it is another thing done to me, another procedure.  It is a medical appliance, a tan rubber tube with a stopper on the end, connecting my outside with my inside.  It can be used to get part or all of my nourishment.

Even the the radiation will be very specifically focused, it will affect other cells in my mouth and throat.  People getting radiation there experience throat and mouth pain, making it difficult, sometimes impossible to eat.  And during this time of physical and emotional distress, sufficient calories are needed for healing.  I could take a chance and wager that I will be able to successfully maintain adequate nutrition and hydration.  But if I lost that wager it might mean interrupting the daily radiation therapy in order to recover for a week or so.  And then  might end up having to have a G-tube placed when my health, stamina, and immune system are at a low point anyway.

I may be putting the cart before the horse here.  But I would rather mull over it a week before the actual discussion than be surprised during the consultation.  All of this reminds me how much I prefer doing to waiting.  So many things are on hold – my job, my grant, the rest of my life!  What and how long with that be?  Time again for redefinition, for discovering agency.

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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.

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