I have been in and out of bed for hours, trying to get comfortable. The pain has been so unbearable at times. Actually......it's awful all day. It's downright mean and my body stinks right now for hurting me like this! Tonight, it's shooting through the whole left side of my body. The past few days have been worse and I have been taking pain medication to get me through it. As much as I hate taking them, they help. I am so exhausted daily from the struggle of just sitting down for lunch, or leaning over the sink to do dishes. Yes, I do housework! Don't look in the dryer, I can't even fold the lovely spring scented sheets I just washed. Because, I can't bend down to get them out. I have limitations, and I hate it. I have to stay busy and by 6pm I can't even think about sitting on the couch to relax. That is more like torture to my whole upper body. I eat standing, it's great.
Again, I am sleep deprived. This just leads to a whole mess of emotions.
Tomorrow I start the process of the Image Guided Radiation Therapy. I read the book they gave me. Paul went online to double check the procedure. He did this to put my mind and his at ease. I am petrified. I hate that they are putting a needle in my spine. I've had this done before and I wouldn't say it was one of my most favorite moments. I was strapped sideways to a metal table while they removed blood from my hand, spinal fluid from my back. Then they did a lumbar drain patch. They inject my blood into my back to heal up the spot. A nice young man held my sweaty hand while I screamed in pain, I didn't forget that! I still from time to time have pain in the area of my lower spine that they touched. Trauma, you never forget. My body didn't.
PET SCAN FUN! MY POOR LITTLE LIVER :(
Doc Bilsky called Friday to talk about my scan results. Everything looked lovely except my funny looking Liver was lighting up in a few spots. A glow that was significant enough to be a problem and needs to be addressed. It was a nice happy glow "8".
Let me deal with spine tumors and then the liver. Things can be treated and fixed. And If they can't...we join the circus.
This whole out of the head and neck cancer is new to me. I had to figure out where the hell my liver was! Right side of the street! Knowing it's not a local problem for me is beyond frightening. It changes the whole ball game. I always knew that it was going to happen. I thought the lungs, something closer, maybe my trachea, Jaw or lungs. I forgot about the spine. I have to brush up on my, "Where does sarcoma cancer like to vacation?" I can't sit back and just think that this is it. It may like to island hop, then I will be pissed. I am not giving it a boat!
I will deal tomorrow and this week with the Spine. Making a plan to see a few of my many oncologist Doctors that I have. Dealing with Sarcoma of the Spine and Liver. I wonder what they will tell me. I do know that there are many treatments out there. A plan of attack needs to be made!
CYCLE FOR SURVIVAL MSKCC
Go to www.cycleforsurvival.org
Co-founded in 2007 by Jennifer Goodman Linn and her husband, Dave, Cycle for Survival is the national, indoor relay-style team cycling event that has raised more than $9 million in support of lifesaving research on rare cancers at Memorial Sloan-Kettering Cancer Center, and in the past five years has funded twenty-five clinical trials and research studies.
That was just a little bit to read about Jennifer and her amazing story. I also have had a connection with from sharing a waiting room for many years. Our Oncolgist Dr. Maki was cycling for her, raising mony for the hospital in which he worked. A cause to get his patients on clinical trials and a better shot at cancer free life.
This year a bunch of cancer support group members who walk the halls of MSKCC joined forces to raise money for this great casue. We are patients at Memorial Sloan-Ketterin Cancer Center. These donations are going to us! They are helping us!
I am Cycling for Survival in 2012!
PLEASE DONATE AND HELP ME REACH MY GOAL! NO GIFT IS TOO SMALL.
www.cycleforsurvival.org
To make a donation go to:
1. TEAM
2. CURRENT TEAM LIST
3. FRANKS CYCLERS (Frank is amazing!)
CLICK ON MY NAME TO DONATE " MICHELLE PATERNOSTER" thank you so much xoxoxo
2 comments:
Be strong and get through this ordeal. Get that radiation in there to fight and kill the cancer!
Every new experience is scary, I cried when I signed the consent forms for my recent radiation. But it's over and I'm glad I did it. I may be doing it again for my lung mets. We'll see... chemo, rad, or VATS? What will have the best outcome?
I hope your outcome is that the evil Sarcoma is gone, once and for all, gone. Thinking and praying for you Michelle!
Hey, MichelleOnLongIsland. Even though some other things might seem a little shakey, your sense of humor still good and zingy.
Guess what I'm doing right now? Right this very moment, I'm sitting in the very crowded waiting room of the Radiology Dept at MD Anderson hospital waiting to get a full body CT scan, drinking the very berry-flavored barium cocktail. Mmmmmm. Dee-lish! Did you know we really do have something in common now? Bugs in the liver. How I wish we didn't have that in common! Actually, they told me I was NED at my last scan, that all my liver bugs had been cut out or were dead, so this scan is a big deal--my first serious scan since I went off chemo in May. They already cut out 2/3 of my liver in the last surgery in January, so if there are new baby bugs in my liver (or anywhere else), I dunno if more cutting is an option. So a clean scan would be nice, but I'm trying not to let my hopes get too high.
I met my new onc today. She definitely did NOT like me. She was brusk on the edge of being rude. Apparently, my reputation preceded me! Or maybe she's dating my former onc. Oh well, I wasn't all that crazy about her either.
I'm thinking about you, MichelleOnLongIsland.
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