My Real Statistics!

So, during my middle-of-the-night worries, I emailed Tuscano and asked him some questions about my new situation. writing the email made me feel instantly calmer, hoping to receive some soothing words back from him. How many times do you think I checked email today? Take that number and triple it. Kim is at the movies with the kids and I was enjoying the quiet twilight when....Tuscano called! He wanted to make sure I was okay emotionally and he gave me his cell number in case I had any questions while Joseph is away (isn't that nice?!) He referred to the study I read and explained that some of the things they don't tell you are the ages of the patients who died from bleo toxicity....they weren't just over 40, they were "well over 40". He also explained that they had acute forms of the toxicity, whereas he described mine as "relatively mild". He is still putting my overall survival rate at 90%. Okay, so it dropped 5% since my PET scan, but I'll take it over the 65% the publication sited. I know I need to let go of these silly statistics and just live my life. No number can dicatate my outcome. I'm the one who's going to do that. So, no more cancer abstract reading for me! I'm through! These big girl panties are working...

update

Joseph's sister, Kim, is spending the week with us while I recover from treatment #8 (yahoooo!) and while Joseph is at a Pepper meeting in Morocco. So, she took me to the center this morning and Tuscano met with me to explain the results of yesterday's tests. He said that my lung function has lowered 20%, meaning my lungs aren't floating oxygen past the membranes of the lungs and into my bloodstream efficiently enough..... and it is from the Bleomycin. So, I will no longer be needing that lovely chemical in my regime. What does that mean? I just read a depressing publication in the Journal of Clinical Oncology. The Mayo Clinic studied groups of Hodgkin's patients who developed Bleomycin Toxicity and compared them with patients who weren't affected. Shall I relay the good news or the bad? Okay, let's get the bad out of the way....This study found that the overall survival rate of patients with toxicity decreased from 90% to 63%. Shit. And they didn't die from Hodgkin's, they died from pulmonary syndrome. Shit again. The good news? I am under 40 (by the skin of my teeth), which statistically is a good factor, and I don't have an acute form of the toxicity. Chances are I'll stay in remission and my lungs with recover. I think I'm going to leave reading these abstracts to Joseph. He filters for me so I don't FREAK OUT. Now I get to stay up all night, high on steroids, and think about these new developments.

I'll put my big girl panties on tomorrow.....

No, I'm not singing. I'm sucking carbon monoxide and methane in a glass booth. Cool, hu? What's a little more poison to this body o' mine? I had to go in for a pulmonary lung function test and 3 chest x-rays today because of some lung pain I've been experiencing lately. 10% of people receiving bleomycin in their chemo regimes are affected with interstitial fibrosis of the lungs, yikes! They compared my lung function with the baseline they took in September and there was a 15% decrease. So, tomorrow I find out what that all means. I might have to stop the Bleo if Tuscano determines that's what's happening. Hopefully it's something else like an infection or scar tissue from the dead cancer........

Okay, Joseph has been in Mexico for the past week, leaving the kids and I to fin for ourselves. Last night was a perfect example of what our time together entailed......
I was in the kitchen preparing custom dinners for the three of us. Scrambling eggs, baking french fries, warming soy sausage, cooking rice, chopping broccoli and heating up stew pour moi. I'm an octopus with all burners going, feeling quite proud, when all of a sudden, Zoe comes into the kitchen looking sheepish. She says, "Mom, come into the bathroom. I put too much toilet paper in the toilet." I reluctantly turn my back on the stove to check out her trouble. Sure enough there's half the roll in there. Hoping that it just looks like half the roll, I flush it. Wrong! Water starts overflowing everywhere! I sprint for the garage grabbing a handful of rags and the plunger. Zoe is following me frantically whispering, "I'm sorry, I'm sorry, I'm sorry." As I'm racing back through the kitchen, the eggs are smoking, and the oven beeper is going off. I turn off the eggs and run down the hall. The phone is ringing now. After a quick fix in the bathroom I try to salvage the food. In the midst of this, Kai is scooting along the kitchen floor on his butt exclaiming, "I pooped! Mom, change my diaper!!!!" Deep breaths are happening at this point. Neither of the kids would touch their food, so they had cold broccoli for dinner. I left the dishes in the sink, the rags on the floor in the bathroom and called it a night. Other highlights of this week included milk spills, a flour spill, burning my arm with steam, Kai falling off his chair not once, but twice resulting in goose eggs, and a multitude of fights, time-outs and tantrums (thrown by all three of us).

Natalie

Natalie....is an amazing friend. She has a gentle spirit, and a huge heart. When I need to talk, she listens with her entire body, responding thoughtfully, and honestly. She is sensitive to people and their energies, intuiting moods and emotions with incredible accuracy. She's got the best poker face of anyone I know, allowing her to fool even the most alert. Her laugh is genuine and deep. She's the only one who would be crazy enough to drive to Oregon and back with me in the same day at a moment's notice. Her door is always open for tea, especially in the wee hours of morning when neither of us can sleep. She's got a wild side, which I love, that only comes out when she feels safe. During the beginning of my treatments as my hair was getting shorter and I had a fierce fight in me, she said, "Lymphoma becomes you." Recently when I opened the door to invite her in, she looked at my shaved head and laughed loudly saying, "You're lucky you have a beautiful face!" Only she could get away with that without receiving a black eye. I thank her from the bottom of my heart for the help she's given me so far....organizing meals, collecting quotes, throwing me a kick cancer's ass party, the almost daily phone calls checking on me, popping over when she thinks I need a break in the routine, making sure I have rides to my appointments, and giving me encouragement to see the end.

Goin' Kojak

Mom and Dad have been here for the week of my 7th treatment. It's definitely getting harder on my system. I'm the horizontal mom from some strange hairless planet. I am so ready to blow this pop stand. Hawaii? Paris? Le Grand Canyon? Something exciting and rewarding...... Anyone want to join me?

Hey Bear Cousin, what do you think of this spiral for my scalp?