It is more important to know where you are going, than how long it takes to get there.



Monday, July 16, 2012

Michael Jackson...

Not only do I have issues with lymphedema, I also deal with fibrosis and neuropathy on a daily basis... and that is a whole bunch of syllables.  (Did you ever notice that the more syllables a medical condition has, the scarier it sounds?  With the exception of that two-syllable word....cancer.)

Neuropathy is when my arm tingles like it has fallen asleep.  It only takes a little cat nap, and tingles for a few minutes.  The one difference between neuropathy and when your arm falls asleep, is that neuropathy doesn't hurt when it wakes up.  There is something a little strange about this whole neuropathy thing...I kept telling my doctors , Dr. Dad and Dr. Banana Split that my arm felt like it was falling asleep and tingles, but they never responded with the name of the condition, the cause, nor asked me any questions about it.  It was as if I was telling them I had a bad cold.  I kept thinking, "Do they think I'm making this up?  Why aren't they commenting on my tingly arm?"    This is another example of the importance of asking doctors lots of questions, and don't stop until you get an answer.  Not until I attended the Livestrong Transitions program, did I learn that tingly feeling was an actual condition with a name.  Neuropathy can be a side effect of radiation.  Fortunately, this side effect has lessened quite a bit.  At one time my arm fell asleep several times a day, but not it only falls asleep about two times a week.

The other radiation-causing side effect if fibrosis.  There are several different types of fibrosis, and I don't know the exact name of my condition.  My fibrosis presents itself as hard rocks in my belly boob- the reconstructed breast.  Under the skin are some spots that feel like hard rocks.  I also have some scaring from radiation burns that won't heal.  On one spot the skin keeps turning gray -dies - then becomes red, and then the process.repeats ...not so pretty, and a little uncomfortable.  Most of the time I don't feel the fibrosis, but sometimes, for unknown reasons (Doctors don't even know the reason,) they fibrosis hurts.  You will not believe the treatment for fibrosis......hyperbaric oxygen treatment!  What is that?...keep reading... 

When Dr. Dad told me that I needed hyperbaric oxygen treatment, I immediately responded, "You mean, like Michael Jackson?!"  If you are old enough, you will remember when Michael Jackson slept in a hyperbaric oxygen chamber - a metal  and glass coffin-like machine.  I then asked, "Will my voice go up an octave?  Will my skin get lighter" - which seems like an impossibility since I am just this side of albino. Dr. Dad went on to tell me about "oxygen bars"  ... a place where people belly up to a bar with oxygen masks.  What?!  I have never heard of such a place?  Am I living under a rock? (Another rock reference.)  If I'm going to belly up to a bar, it better have something more than oxygen.  He went on to tell me that these oxygen bars don't provide pure oxygen and cannot replace hyperbaric chambers.  Again...What?!  Who in this world with a medical condition would even think of such a bizarre way to treat it?    I recently learned that Michael Phelps is using some type of hyperbaric treatment.  What is it with the name Michael? 

Hyperbaric treatments centers are usually called "Wound Centers."  People with internal or external wounds that won't heal undergo hyperbaric oxygen treatment.  Older diabetics can be found in these centers.  The side effect of hyperbaric oxygen treatment for me is pretty scary...  If a little rogue cancer cell is hanging out waiting to do its thing, the oxygen could feed it.  Yikes!  I've already had a couple of scares (next blog) and I don't want to go down that cancer road again.  So, I put off calling The Wound Center for 7 months.

I finally visited the local "Wound Center" about 8 weeks ago, and I still haven't booked the beginning of treatment.   I know, I know...it will be fine, but there is a little tiny voice in my head that sounds scared..  The treatment is EVERYDAY, Monday - Friday, for SIX WEEKS!  I takes about 2 hours each time.  In the chamber, you cannot bring anything with you...no book, not iPod, nothing.  They have a satellite TV and DVD player.  A friend of mine, Costume Queen,  has every "Sex in The City" on DVD and offered to lend them to me since I never saw a single episode.  However, I am worried that it might be too racy to watch with techs and old diabetics around.  Maybe I should go safe with PBS Dowton Abbey.  You cannot wear any perfume, lotion or other products that might interfere with the pure oxygen.  The chamber gets pressurized to 60ish feet below sea level.  This is as close as I will ever get to scuba diving!  No sharks or scary fish in the chamber.  My other fear is claustrophobia.  It is a clear chamber, but still I'm surrounded in this big glass coffin.
Lovely way to spend a couple of hours...

Whacky thought for the day...
Can jewelry shrink?
Do you think weight gain and jewelry shrinkage are related?