Wednesday, October 9, 2013


It's been a long week. And it's Wednesday. Monday was my appointment with Interventional Radiology. It's one of those departments that you have no idea exists until you need it.  It's a very Men in Black, Agents of SHIELD operation as when they schedule your appointment the instructions are this:

Go to 6th foor Mountainside. There will be a phone on the wall outside of the Intensive Care Waiting room. Dial this number and wait for further instructions.

That's where the sexy spy like feel ends because we are instructed to take a seat in the waiting room. This waiting room brings back fond memories(sarcastic face). The Mallory family collectively logged many quality hours in this room. This room was the site of the inaugural "the chairs here suck" campaign spearheaded by my mother in law. 
The good news is that the chairs were upgraded shortly after that campaign and now they recline and everything. But I digress. We are retrieved by a young gowned man who directs us to yet another secret door around the corner which opens to...duh duh duh- an exam room. It was overly anticlimactic. The Interventional Radiologist comes right in and apologizes profusely for us having to be here, read up on my file yada yada. I like him but he seems young. He starts talking about Li Fraumeni Syndrome and how he read up in it and it seems vaguely familiar from when he was back in school like 15 years ago. Now I feel old and not in the good- I made it to old age kinda way. So in today's medical education - Interventional Radiology(IR) is essentially an offshoot of surgery and is also known as surgical radiology. They are the manpower and brains behind procedures such as stents and ports. With small tubes and catheters- they use Xrays, CTs and ultasound to guide small wires and catheters through veins- avoiding major surgery.

 Ports(or medi port, or portacath) are a fact of life for anyone who has a chronic medical condition requiring blood draws or infusions. So when the doc started the basic background- in the interest of efficiency and full disclosure- I let him know we were familiar with ports- that our daughter had one for her chemo. He looked down- apparently that fun tidbit was not in the chart.  He shows us the mechanism which is very metal looking. This is a concern because I seem to react to things- not just emotionally but metals- adhesives- latex. He assures us it's completely non reactive, wont set off metal detectors, mris or anything- the kids can throw magnets at me all they like- they wont stick. Good enough. I ask if it's a power port- one of my good mutant friends said make sure it's a power port. It will be a power port. It's very Ironman. It's metalish, triangular with a round squooshy part the needle will go in when I decide which super mutant life saving regimen of toxicity I will have them pump into me.

We schedule the appointment for Wednesday. It all seems to be moving fast.  I see the fall break slipping away. I know it needs to be done, there is no good time- but it kills me the kids are off this week and I had so many things I wanted to do with them for fun and now it all seemed to be going up in a puff of glitter. That is cancer. But I try to remember- doing this is to make sure next fall break won't be a complete bummer.

Mind you the 4 kids had dentist appointments at the same time I had this appointment. The good thing about having a dentist nearby is that I made a call to the receptionist and she said she would make sure they were taken care of. In our world that means no xrays. In a family with cancer syndrome known for nasty brain tumors, no I don't think xraying your nugget every 6 months is a good idea. Dental hygiene should not include regular irradiation that could bounce around ones brain and that is another topic for another time. But yes it bothers me that my kids are already taking themselves to dentist appointments. But this is our reality. They were briefed on route, expectations and instructed to text us at every checkpoint. They did.

Today went well. The nurse took a couple tries to get the IV in- one of the main reasons a port will be a necessity- due to my other surgeries I'm down to one good side. I'm already nonstandard in that my port is on my left- it's usually put on the right. But- as the doc put it- since my right side is fairly devastated- lets go with the left. I've always wanted to be devastating. Well there you go.  The procedure is done under conscious sedation- which means happy drugs mixed with pain control. It also means shorter recovery and for me a crazy case of the munchies afterwards. I felt the tugging and was sort of consciously aware but not really.  I apparently have started to develop a tolerance to versed- the happiest of happy juice- but then again I have been making weekly sedation a habit here in the past month or so. Hopefully we can change that.

I am beyond thankful to have my sister in law here who made sure on day 3 of fall break- the children did not spend yet another entire day unsupervised.  Lily hugs me gingerly. I am never sure how much she remembers- but I know this brings back feelings for her.  She wants to see it. I pull the neck of my shirt over and her face goes white. She remembers. I hate that she remembers but she is my inspiration. I remember when she was diagnosed and everything was so bleak and every report screamed poor prognosis at me. But for every poor prognosis, there is one that can defy the odds. She is that one. Maybe just maybe- other than her Super mutant genes- maybe she gets that from her momma too.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)