Mirror Mirror

I was looking in the mirror today and noticed that my eyes were hollowed.  I looked a little funny ... perhaps ghostly.  My mind searched for the reason - was it my skin color?  What's wrong with me?  No... it wasn't my nose ... it's always been funny.  I was beginning to worry when it dawned on me - my eyelashes are thinning.  I seem to still have quite a few small blond lashes, but it looks as though my lashes are gone.  Here ... see for yourself.

A couple months ago, Eric and I were talking to a woman in the waiting room before chemo.  I asked her about hairloss; she had lost all her hair both times she went through chemo.  The first time she wore a pair of glasses to help frame her face because her eyebrows were gone.  This time she went to a makeup store and bought fake lashes and an eyebrow pen because she was sick of wearing glasses she didn't need.  I didn't quite grasp what she was talking about until my eyelashes thinned.  The glasses really do help me look more "normal," or at least more like me.  Alright, I look weird in both pictures, but trust me on the glasses thing ... they help.

So yes, my hair is still falling out all over the place.  There were several squirrels stuck to Brennan's pajamas this morning, and a big squirrel in the shower.  I have heard chemo patients say that such squirrels bothered them enough to cut their hair short, but I guess I like rodents because I'm not phased by them (my family ... well they're another story).  Here's a fun fact; the time of the chemo cycle I notice my hair falling out most is one week after treatment.  It's not right after treatment like you would think.  or ... it could just coincide with the time I get around to taking a shower ...

I think I've mentioned the "Assholes Live" concept.  It's the same concept as "The squeaky wheel gets the oil".  I most likely embarrassed my husband to death, but I definitely took this concept to heart today.  I was meant to get two tests today.  The first is the Pulmonary Function Test (to test lung function)and the second is the MUGA (to test heart function).  I had each of these tests back in December as baseline tests, and this second round is meant to see whether or not the chemo has had a negative effect on my organs.  The Pulmonary Function Test (or PFT) was a breeze.  This is the test that I struggled with in December because they lock you in a tiny phone-book-sized, clear box and shut your air supply off!  Turns out that they can do the test without the box, so this one was a breeze.   (I haven't been looking forward to being locked in the box, and have actually been practicing being zen in tight spaces for .... umm... a couple weeks now.  Eric even came with me for moral support.  Alas, the first time I had the test, the woman was merely trying to torture me.)

Back to the Assholes Live story ... the second test was meant to be the MUGA test, but when I checked in, I overheard the woman at the desk say to another woman that my doctor's order for the test was from December.

Assholes Live Lesson Number 1 - Don't hesitate to easedrop. 

It has been my experience that not everyone at the hospital shares information with me ..  the patient, so I've been finding ways around it.  If I think they aren't telling me something, I keep asking people until someone spills the beans.  My two advocates who know I like information and tell me everything are my doctor (he's awesome) and my chemo nurse (she's aweseme too).  So, when the woman at the desk gave me an order from December, I told her that it was an old order and that she needs to get a new one.  AND next, I paged the chemo nurse. 

Assholes Live Lesson Number 2 - Don't hesitate to page hospital staff - doctors, nurses, anyone. 

The chemo nurse told me that the order in the system was actually for an Echo cardiogram.  She confirmed that the MUGA order was from my first MUGA ages ago.  While I was talking to my chemo nurse, the woman at the desk (who already hasn't performed her duties well) called my doctor's nurse (not my chemo nurse) for a new order for the MUGA and she sent one.  The front lady at the desk is now relieved that her job is finished and tells me to wait for someone to call me.  Of course, my question is "WHY?"  When they paged me (I was busy looking up the difference between the echo and the MUGA on my phone), I asked the radiation nurse "why?" and she rambled on and on about it not being her job or some crap like that.  She finally offered to page my doctor's nurse.  The doctor's nurse called and told me that their was no difference between the MUGA and the Echo.   I didn't believe her, but I wasn't getting anywhere, so I told the nurse I would move forward with the MUGA only to ask the next person what the difference was between the two tests.

Assholes Live Lesson Number 3 - If you aren't getting straight answers, keep asking questions until you understand what is happening with YOUR treatment.

I finally got a real answer; the MUGA is more accurate, but it comes with a price - additional radiation - she told me that it comes with half of the radiation of a CT scan.  I don't want additional radiation (I'm going to have lots of CT scans and PET scans in the upcoming years ... I don't want more radiation).  SooooMUGA." He told me what I already knew.  I asked him if he preferred that I get one test over the other and he said that he does not care in the least.  If the Echo is at all abnormal, he will immediately order a MUGA.  Finally!  I walked out of the hospital and scheduled an Echo for the next day.

Am I a nightmare patient?  Yes. Eric was even wondering about my sanity half way through the process.   Am I an Asshole?  I don't think I have that title yet.  However, I do feel comfortable with my treatment ... and if there's a news report about concern over the amount of radiation given to patients during medical testing, I'll feel like I did the right thing.  Now if you'll excuse me.... I have to go all the way back to the hospital for my Echo!!!!!!!!!  he he......