Discouraged

It has been a LONG day. Dryden and Parker are improving but still have slight fevers, stomach aches and general malaise. They have pretty much just laid on the couch watching movies all day long (thank you Grandma for the new Peanuts Christmas movie!). I spent most of the morning doing laundry and cleaning bathrooms even though it will all need to be done again when I am sure that people are healthy. Then I went to Magee to see Dr. Ahrendt's nurse practitioner (or PA... not sure which she is...), pick up some scripts for repeat scans and talk to a researcher about the latest trial in which I am going to take part. Unfortunately, none of that brightened my day at all. It seems that I do, in fact, have lymphedema - to which Dr. Ahrendt said, "I really worried about that in light of how many lymph nodes we took". Interesting since I don't recall it being portrayed to me like that at all! It was my understanding that there was a very small risk and I was at the very low end of the small risk (being that I don't smoke, am not obese and am pretty active). Regardless, this means that I need to track down a physical therapist who specializes in treating lymphedema (and the NP emphasized to me that it had to be a specialist not just someone who thinks that they know what to do. That should be easy to find... "so, does your specialist just THINK that they know what they are doing or do they ACTUALLY know what they are doing?". Should go over well when I start calling around...), get treatment and instruction on home exercises & massage techniques and get a customized sleeve to help encourage proper lymph drainage. In addition, no one liked the looks of that lesion on my shoulder that still hasn't healed (remember the MRSA scare in October??) so I have to see my dermatologist (sure, no problem... it usually takes 6 months to get an appointment but they have suggested that I just tell them that I am a cancer patient. That oughta do it! I'll keep you posted...) and get it biopsied. "Hopefully" it's not cancer. VERY encouraging!! Not to mention the added copays and time drain of all of this craziness. Top it all off with waiting for the research chick for over half an hour (I think that I forgot to mention that Audrey called during my first appointment to let me know that Parker had woken from a nap crying that his ear hurt, afterwhich my phone promptly died and I noticed that one of my favorite shoes was missing the plastic heel support... did I mention that it has NOT been a good day??) so that she could not really answer any of my questions and try to refer me to a financial counselor to discuss whether or not my insurance would recognize the study's needs (bloodwork, etc.) as necessary for treating my disease. By the time that I left there my bitterness, discouragement and despair over yet another Christmas season lost to vomiting and illness (before you think that I am exaggerating our plight, recognize that we are going on 7 Christmases in a row of such disruption. It used to be my favorite time of the year but it is fast becoming something that I dread due to the incredible disappointment that it brings...) was compounded with the fact that instead of emerging from cancer craziness, I am just sinking further and further into its mire. I can't find the sunny side of the street, I'm over just putting on a happy face and I usually just find myself crying out the Lord for mercy. I try very hard to remind myself that there are worse circumstances and greater evils that people (some of which I know and love!) are enduring every day, but somehow, this time, I can't seem to pull myself back from the brink of despair. The one thing that I have asked for this Christmas is health (and not even for myself...) but it's looking like even that is out of reach.

I heard from a very dear friend today, who while completely sympathetic to my sad plight, offered insight into what I know to be true even though I can't quite grasp it... she said,

"Remember…while sickness can take away the quiet family time sitting by the fire sipping cocoa, it cannot take away the real reason we celebrate."

so, I guess what I ask tonight then is rather than praying that it will all just go away, pray that I can remember the real reason we celebrate...