Friday, November 21, 2014

Life After Cancer: Eating Like a Hobbit


     Apparently I am Hobbit.
     While not exactly what one could call short, you might have noticed my hobbit-like tendencies earlier before it became official.  I have lived most of my life in the mid-Willamette valley of western Oregon with only a brief (8 years, but who’s counting?) journey to the Misty Mountains of Alaska,  and I currently live in Greenville so you might think I would have noticed myself, but no.
      I’ve had another week with a ton of medical appointments.  First was my appointment with our new cardiologist on Monday.  Since the survivorship oncologist caught my heart failure from my symptoms in mid-October, I’ve had 2-3 doctor’s appointments every week.  With Matthew being so little and still nursing and no family near to abuse for baby-sitting, we’ve been trying to schedule all these appointments in the morning so Josh can come with me and watch Matthew and still have most of the day to head back into work.
     Some times that works perfectly, we get in and out before 10 and Josh doesn’t have to stay too late at the office or work Saturday to make up the time.  This week has been a total failure of that previously successful system, at least in terms of Josh getting to work on time.  On Monday we were hours behind our projection because the cardiologist was wonderful and spent so much time with us talking about heart failure.  Wednesday I had an appointment for a CT scan of my heart.  This was to make sure the chest pain I have been having is not the result of the chemo or radiation I had for breast cancer treatment frying my coronary arteries.  Fried coronary arteries is bad.  Just in case that wasn’t completely obvious.  We still have not received the results of that test and are going on the no news is good news.  In the mean time we weren’t prepared for the “you can’t nurse for 4 hours after a CT with contrast” and after we left the hospital had to run to the store for bottles and formula and Josh didn’t get to work until after lunch.  Again.
     Today we had, drum roll… another heart test.  This test was like one of those Facebook polls: answer these questions to see which book character you are most like.  Apparently the doctors earlier were leaning toward Mrs. Bennett from Pride and Prejudice but just in case, they wanted to run another test.
     The test is run in the hospital in the same area other heart procedures are run.  You come in and after verifying your name and birthday more than 100 times they take you back to a room that is like the triage area of the ER.  There was heart monitoring equipment and a bed and a surprisingly comfortable chair.  First they get an IV going.  Today I had Nurse Joy, for all you Pokemon fans.  Then they strap you to the bed and the fun begins.
     So here’s the test part: it’s called a Tilt Test and after you are strapped to a special hospital bed and hooked up to this machine that monitors everything and they take your blood pressure like a million times, the nurse tilts the bed up so that you are essentially standing up on the footboard of the bed.   And then the staff wait to see if your heart stops.
     Seriously!  This is a bonafide medical test: 10 minutes of lying flat to ascertain resting pulse and blood pressure and then about 15 minutes of standing up.
     And, it turns out that I’m not Mrs. Bennett after all.
     I’m a Hobbit.
     Because, after only a few minutes of being upright, my blood pressure of 95/50 starts to climb and my resting pulse of 50-60 does as well.  After about 15 minutes of standing my blood pressure hits 130/70 and my pulse has rocketed to 150 beats per minute.  Just from standing.  At this point I am having difficulty breathing and am dizzy and then a little medication to mimic my beta blocker and, WHAM!!  My pulse and blood pressure start to fluctuate and at that point they discontinued the test to lay me down with my feet elevated because I was going to throw up and pass out at the same time, and my blood pressure was dropping past 70/40.  I end up laying with my feet elevated for 15 minutes with a raging head ache, nausea and a slowly recovering heart.
      NOT a Mrs. Bennett, drama queen, quick I need a fainting couch and a white handkerchief to wave, “no one knows what I suffer with MY nerves” kinda woman.
     After a few minutes of head down, feet elevated, my pulse and blood pressure start to even out again.  Nurse Joy calls the cardiologist to interpret the findings which is “neurocardiogenic syncope”, just a fancy way of saying I pass out when my head and my heart stop talking to one another, and for me this is entirely position related.  (Josh thinks this is all very funny and says he always knew that I was messed in the head!)
     We aren’t quite sure what this will mean with my congestive heart failure.  Neurocardiogentic syncope, also sometimes called vasovagal syncope, is a very generic term for the most common cause of fainting.  You stand up too fast and pass out, or pass out at the sight of blood, and they will call it one of those two terms.  Typically this type of poor regulation of blood pressure is not a big deal.  The doctors would tell you to eat more salt and drink more and to be careful not to stand up too fast.
      When I ended up in the emergency room 2 weeks ago I wasn’t dizzy from standing up too fast, and after laying down my symptoms were worse.  Nurse Joy said that what happened on the Tilt Test was a sort of forced version of what probably happened that afternoon.  My pulse was elevated as I took all five kiddos on a field trip to the Greenville Animal Shelter.  We finished by walking up the hill to our truck, me lugging Matthew and a diaper bag and arguing with a child who was mad we weren’t staying longer.  Everyone gets strapped in, I sat down and started to drive home and my heart, which has been damaged, and weakened by the damage, can’t handle the stress and started to shut down.  I got a head ache while we are driving, a really weird and wrong kind of head ache and the first twinges of “I think I might pass out.”
     We got home.  After sitting in one position for 25 minutes I got out of the car and started unloading 5 kids and 5 kids worth of field trip stuff.  I started to feel really bad at this point and decided to go lay down to nurse Matthew and rest; I walked up a flight of stairs to our bedroom and lay down.  Game over.  My heart can’t cope.
     So, yeah, what exactly does the doctor tell me to do for this?  My prescription: eat like a hobbit.
Seriously!  He’s like, you need to start eating at least 5 meals a day and no salt but try to drink lots of water, but drinking water can be really bad for your heart so try to space it all out through the day and then we will see from there.
     By my reckoning that means I need to eat breakfast, second-breakfast, lunch, snack, dinner and dessert.  In other words, eat like a hobbit.  Josh thinks I’m wrong and it’s really dinner and supper, but I told him I am sure I the doctor really meant I have to have dessert.  For my health.
    
     So now we wait.  I will start taking my beta blocker at night instead of in the morning and see if that helps.  November 30 I will take my first sojourn to Florida, to the Jacksonville area Mayo Clinic, to see if they can shed light on this whole deal and in the mean time I embrace my hobbit-like status. 

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