Thursday, May 13, 2010

Radioactive!?!? Seriously?!?!

I have given up on sleep for now - the super duper controlled substance sleeping pill does nothing for me. It doesn't make me drowsy, it doesn't lull me to sleep and it doesn't knock me out. The only thing I have found is that once I do actually fall asleep I will get 2-3 hours of a deeper sleep but that is it and then I am up. Needless to day those Disney-esque mice images were just a figment of my imagination - still waking up to my normal day to day messes. Guess I had put too much hope in that scenario.
Going back to how I am convinced the computer flashes some warning to the doctors and nurses that I might have some anxiety issues - I think I can be assured of that today. The doctors and nurse while explaining the PET scan to me yesterday said it was a similar machine to the CT scan, that I would need to be on a low carb diet for the remainder of yesterday and nothing except water for 4 hours prior to the test. They said they would inject a glucose serum in my vein and I would have to be still for about an hour. That is where they stopped and I took their words as truth so I didn't come home and google PET scan - I thought it was a simple little test - they lied, or they didn't tell the whole truth or they neglected some big parts of the story.
When I woke up this morning I was starving and water was doing nothing to squelch my bellowing tummy noises. Poor Ellie went to wait at the bus stop in the pouring rain and luckily our neighbor pulled up and offered her a ride. I was watching from the window as she crossed onto the grass and was nearing the puddle at the curb that stretched out about 5 feet and was saying, "No, no walk down a bit further." but no, she walked right through the huge puddle in her crocs. I got Nick dressed and went over to drop him at Mom's. We had a huge breakthrough today - Nick normally cries (for about 30 seconds) or glues himself to my body and won't release when I try to leave but today I said, "Give me a hug and a kiss - I have to go to the doctor but will be back at lunchtime." He gave me a hug and a kiss and just calmly watched me pull out of the driveway - no tears, no struggles - makes it so much easier on my heart.
I have now been to 3/4 of the Northshore hospital locations in less than a week - I know there isn't a prize involved but I would have taken a sticker. I have to tell the people of Evanston/Skokie that the old Rush Northshore is not like it used to be - very nice, free parking and ER parking right adjacent to the entrance. I checked into radiology and was told someone from nuclear medicine would be with me shortly (1st clue I was suffering from non-disclosure). Jun was my guy today and as we walked through a maze of halls he told me a bit about the PET scan. As we walked further and further I started noticing the radioactive signs (2nd clue). After passing through about 4-5 doorways with the signs we arrived at the PET waiting room. Not glamorous, no pictures on the wall - just a recliner and a typical medical cabinet. Jun reviewed my questionnaire which had asked my test, biopsy, chemo, and radiation history. I had to sign a form saying I wasn't pregnant or nursing (3rd clue). I liked Jun, I told him I had rolling veins and he said it wasn't a problem because he had rolling needles.
Jun then disappeared for a couple minutes and came back with his rolling cart - gauze, needle packs, two syringes full of clear stuff, alcohol wipes and a metal box that he put on the opposite side of the room (strange - clue 4). It took him a couple minutes to find a viable vein but he did and then he told me he was going to start to inject the first vial of radioactive serum (what - I saw the signs but really this is what I am here for?). It was a weird feeling almost like the liquid was going over speed bumps in my vein. He then went and opened his locked (clue 5) metal box and got out a over sized metal syringe that looked like it should be in Ironman - not being injected into me - it was radioactive glucose. Finally the remaining vial of radioactive serum was pushed and the IV needle thing pulled out. Jun then kindly told me in a regular, calm voice that he was going to leave me alone for the next hour because I was radioactive and he really tries to minimize his exposure?!?! He assured when he was turning off the lights and closing the door that I wouldn't glow and that I should try to fall asleep. Seriously, sleep - I have a controlled substance sleeping pill that can't knock me out but hey maybe radioactive crap running through my veins will do the trick.
I closed my eyes and I swear my eyelids were having a rave with glow sticks and psychological inkblot slides - I know it was just my imagination but they looked very real. I sat in my recliner, in the dark counting in my head, thinking about what I need to send with Rob and Dean to Michigan but not sleeping. Jun finally knocked on the door to let me know my hour was up and I could go to the washroom, remove any clothing that has metal and any jewelry I was wearing. He escorted me through another one of those radioactive warning doors and into a very spa like room - except for the big honking machine in the middle of the room. He had me lay on the machine and he covered me with a blanket, removed my bandage and then while strapping me onto the table he explained how important it was to keep very still during the 25 minute test - wait, why I am being restrained onto this table (lost track but another clue). He did the laser test to make sure I was aligned correctly and then once again left to minimize his exposure. I have found it is way easier to just close my eyes and not keep track of the machine - the PET scan machine is open (neither end is closed) but they raise you almost to the top of the underpass and it is much wider than the CT scan machine - almost encompasses your body. I let my mind take me back to Rob and my honeymoon to Sea Island - there was a soothing noise to the machine and there was an air conditioner shooting cool air on either end. Unfortunately, Murphy's law says when you are told you cannot move and restrained so you really can't that is when your eye starts to twitch and feel like ants are making their way to a picnic on your nose. I worked my way through it. Jun came over a speaker and told me only 5 more minutes left.
The scan was finished and he told me the results were already on there way to Dr. Marsh - I should have news this afternoon. Jun walked me through the maze of hallways again and explained I would probably do this scan at least once more but possibly twice. It seems odd to me - I already have this gross tumor in my body and now we're adding radioactive serum, radiation, chemotherapy - I know it all has its purpose but still seems odd.
I called Mom to find out if I could pick lunch up but she had it covered. I somehow was on auto-pilot and that led me to Jewel and I was running in to get some of those breyers brownie ice cream sandwiches and look they have strawberry ones, too. I also ended up with fritos which I had to open in the car because I was pretty sure I wasn't going to be able to drive home without something salty in my tummy. Nick and Tony were a hoot this afternoon between sitting in boxes to watch Toy Story to running around with Gladware containers on their heads - too funny.
When I got home there was a message from Dr. Marsh - so I tried to call him back but ended up leaving a voicemail for my friend Margaret. Not too long later Margaret called me back to say the scan yielded exactly what they expected with the "hot spots" where the tumor is and NOT ANYWHERE ELSE! She also had the results from the cancer marker test - I was 1.1 and the allowable results range all the way up to 5 - another positive.
The sun in shining, Ellie just got off the bus and she pulled another tooth out at school today (she doesn't like when they get loose enough to fall out by themselves). Uncle Dean just arrived, the phone is ringing- its the clinical social worker asking if its a good time to talk...life is back on the fast track.
Rob and Dean are going up to Michigan to start cleaning the house in preparation for Memorial Day weekend and to finish whatever construction is left to do. Got the kids to myself and I am looking forward to a perfect weekend. Tree

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