Monthly Archives: February 2013

Day 215 – Uncooperative Glands

My name is Rick and my cancer status is unknown.

It has been a pretty rough run these last few weeks.  And to be perfectly honest, it has been pretty rough since December.  You see, I believe there is something wrong with my pituitary gland and the doctors haven’t been addressing it.  Instead, I keep going back for more blood tests and each one is inconclusive so the do nothing trend continues.  All the while my health seems to be deteriorating.  I suppose I dissuade them with my consistent anti-drug stance but at the same time, my symptoms should have been compelling enough to do something about it sooner.  Now I have become a bit incapacitated and it is not fun.  Let’s rewind.

My particular immunotherapy drug has inflammation as a side effect.  The major rash I had after my first dose was basically skin inflammation.  The docs love the “ipi rash” because that’s how they know my body is reacting to the drug.  The drug can also inflame the digestive system (colitis) or cause liver problems or other scary things.  It might also cause the pituitary gland to swell and therefore not function properly.  There have been hints that the gland is not functioning properly for months but there hasn’t been anything overt in the blood work.  Specifically, there are 4 different markers taken from a blood test that denote pituitary function.  For me, 2 have been consistently normal, one has been borderline and 1 has been slightly out of range.  As of the most recent test, they are all normal.  The endocrinologist assigned to my case keeps asking for more tests and hasn’t taken any action preferring instead to wait and see.  My head CT scan shows a slight inflammation of the gland but nothing significant.

Since the pituitary is some type of gland overlord, symptoms can be wide ranging.  In my case there has been lack of energy, slight dizziness, chills and skin sensitivity.  For the past couple of weeks, it feels like I have the flu without any upper respiratory distress.  You know that achy, hazy malaise where all you want to do is lay in bed all day?  Well, that is the way I have felt for 2 weeks and to some lesser degree since December.  Basically I feel terrible with no end in sight.

I went for yet another blood test on Friday morning and finally spoke with a healthcare professional on Friday night.  The nurse was the first person to validate that perhaps my blood levels are a problem that are worth looking into.  Of course nothing can be done about it until Monday.  So, here I am with more days of feeling terrible without a solution.  What a waste.

UPDATE:  Here it is Tuesday and I am finally getting calls back from doctors.  The endocrinologist feels that all is OK given the latest blood test and is not inclined to do anything.  That was the outcome of a call I had with the nurse in that department at around 11am.  I just got off the phone (5pm) with the NP from the oncology department.  They feel that even though the blood markers are normal, the ipi has done this to others in the past.  So, they will put me on a low dose of steroids for the next few days to see what happens.  In the past, I would have been against the speculative use of drugs but at this point, I am willing to try anything.  The hope is that the steroids will calm down the possible immunotherapy drug side effects.  I’ll hope for the best.

These last few weeks have been busy as always.  I have been working and taking meetings in order to get more work.  It feels great to be earning again and even better to be contributing.  Regardless of how lousy I feel, I am still engaged with the family.  While I tend to avoid late night activities I am still cooking and having fun.  The big thing I have not been doing much of is exercising.  I stretch each morning and not much else.  I have been on a few long walks but no more than once per week.  I really want to get back to a daily routine.

One physical sensation of note is pain in my neck.  No, I am not talking about being a father here I am talking about the remnants of surgery and radiation.  The surgery killed a bunch of nerves in my neck and it appears some are starting to come back.  I can tell the nerves are coming back because pain and weakness from the surgery is also coming back.  On top of that, are the internal burns from the 30 radiation treatments.  During radiation I was on pain meds but as you know I weaned off them very fast.  In the months since, I have worked hard to regain mobility and strength.  Now as the nerves start to light up so is the pain from radiation.  The sensation is like when your foot or hand falls asleep; if you touch it it kind of buzzes with pain.  That is what I feel all over the neck and shoulder area.  There is also considerable stiffness with a lot of different head and shoulder movements.  To make matters worse, the flu-like symptoms make my skin very sensitive.  That makes any type of upper body movement painful.

Nuff said:  It has not been a very good couple of weeks but I am certain things are going to get better!