Viola!

GRRR Today!

Walking into the hospital I was determined to get out of pain. I would of went to urgent care if the doctor didn't do anything for me. I said to myself and to him, What will make Michelle happy today? Get me out of pain and a handicap sticker for my car.  I couldn't even sit in the car driving into the city. My back! GRRR!

I am not out of pain yet. But, I did get him to give me a nerve block and a shot of steroid/cortisone in my spine. Ouch.  He said he was proud of me because I use to cry and beg to be knocked out for this procedure. Today I got on the table (slowly, like a little old lady) and took deep breathes. I drooled all over the un-soft blue pillow. Squeezed his hand and viola (mom that's for you!) it was over. Felt the nerve twitch and that was a great sign that he got it. Hoping to be out of pain for at least 2 months.

Doesn't matter. I am going to do more radiation and surgery. Games begin on Monday!

Get ready for my happy out of pain blogs. I am hoping to get some sleep tonight. Paul too! He got a flight home this morning and looks so tired after the long day we had.

Pillows!

Good evening, morning...what time is it???

I don't even know what to do with myself right now.  I am lying in bed, which is the worst because I only feel the pain more.  My back is so bad that I can't even catch my breathe. My hands are completely numb from rubbing this lydocaine cream into my lower back, the spots that I can reach. Shooting nerves up and down my spine and now into my lower back, cute butt and legs. I can tolerate a ton, not this. I gave in to the pain pill gods and hoping they kick in soon. I need relief from this. Every movement hurts. I look like I am being eaten by my bed pillows. Not even kidding you, I must have 10 surrounding me. Rolling around in my sleep or moving makes me jump up. You should check out my adorable wedge pillow! Highlight of my evening.

When my brother stayed with me, I loved that he would listen to meditation to sleep. It was very peaceful. Better than watching t.v.  I need to do this. He is a smart boy!

I am begging my doctors tomorrow to help me. I am seeing them to sign consent for another radiation and nerve block. I am not even sure what's going on.  Going with the flow on this one.

Today was a nice day. I saw my adorable cousin Mary Margaret. It was wonderful catching up with her. She came over and we had a nice time hanging with the doggies in my house.

Exciting to see again. My vision is great! What a difference. This I am grateful for. Patience and good healing on my lovely blue eyes.

Please send a big hug to my friend Frank. He is struggling with eating. He did get some good news this week from the doctors. We are very happy Frank.


Back to my wall of pillows and sleep ( not sheep!)

Doc's in a BOX!

Doctors in a BOX


A few weeks ago my Oncologist suggested that I send a piece of frozen tumor to a place in Boston for some testing. Just like the Wiesenthal clinic.  Knowing that chemotherapy hasn't helped and radiating the same area over & over is not  the greatest, I decided to give it a shot. Can't hurt and I had the little sucker floating around the great walls of Mskcc. 
They test it against chemotherapy cocktails, drugs and a mixture to get some sort of result in fighting, killing, shrinking or even to keep them stable in my body. 
My results......sit down for this one!  ZERO! Nothing would or can help me right now. ZERO!  
Out of 236 mutations.....ZERO! I would like to say I am surprised, but no I am not! 
I just need time. Time will go by and some day soon they will find something to help. 

This week I was privileged to have a room full of amazing doctors stare at me in a small closet like room to go over their suggestions. More radiation, nerve blocks or my favorite back surgery.

My bone scan came back great. It has not metastasised anywhere else. This is great news. The ones that I have higher in my back and lover in the T9 are getting bigger and need to be adressed pronto. They are pushing into my spinal canal. Not a good thing.

My liver, lungs, pancreas & pelvis seem stable. I can't ask for more than that. 

Thinking I was going to try a new clinical trail called Mobic, I had to taper down from my steroids. I could not do the trial and be on them. It was wonderful! My puffy cheeks looked less squirrel like and I was starting to feel better. HOW can this be...what would it feel like to not take medication daily!?? Am I normal now???? NO, I wouldn't be, but close! I've excepted that I am a little wacky! I like it! 
Then the best thing in the world happened. My Brain swelled, again! I was walking down the street in my beautiful nude colored pumps when I lost all feeling in my left leg. First thought, Ah crap I broke my heel. I leaned a against a rough brick dirty wall (fabulous)  to discover that I didn't. I just couldn't walk and had no feeling in my body. Seizure, stroke...broken heel. Imagine a broken heel? What a disaster. 
I felt better after a few minutes and didn't even think about it until it happened again the next day. 
Then 3 days later I woke with another painful headache, vomiting and pure exhaustion. 
These episodes happened 5 times. 

I went into the hospital last Wednesday to have my cataract's fixed and a lens replacement in my right eye. Horrible damage from 3-4 doses of radiation that blinded me.  I was so happy knowing that I could see again very soon. Of course the anesthesia was a thought in my little brain. What damage am I doing with swelling?? It did something. Paul and I walked in the door and as I climbed the stairs in our home I lost feeling in both my legs. This time he was a witness. I couldn't lift my left leg to clear the step. I dragged it up. Banging it against the soft carpet, unable to feel a thing. I didn't get upset, I was way to hungry and tired. 
Brain swelling & now I am back on the steroids and looking like that hungry little goat at the zoo looking for the quarter hand food you get from that little bubble gum machine filled with whitish pellets. Poor little goats. I understand your puffiness. 

Surgery on my back with radiation plaques is the thing I am thinking about. It has to be done soon and I need a few days to really think things through. 

Oh JEEZ! I can't do this right now. I just heard a fast buzzing bug fly past my head! It's because my computer light is attracting something in my room. It's that time of year. Lady bugs, big yellow bees and stink bugs flock to the sunshine on the windows and house. GO TO BED you little sinkers. Now I will be in bed with blanket over my head hoping they don't crawl into my ears or nose! Yuck! 

Getting my garden ready. I had my friend Elizabeth over today to plan it out. This is so exciting for me!  We have a great veggie love thing going. EARL'S GARDENS! She has a blog, so google it. Actually, she's one of my freinds. Scroll through and find her green thumb. 
It will be  filled with the love of fresh  string beans, kale, radishes, carrots, zucchini, and more. 

Wishing everyone a wonderful Spring. Isn't nature amazing. I think of flowers and my friend Elsa somes to mind all the time. She passed away and had the most beautiflul love for flowers. I miss you. 

I am thinking about brining the beeper back in style! I think I want to start a support group for anyone that wakes up after 3 a.m. and can't sleep. We can meet and have meditaion and decaf tea. Just send me a page and we will find a nice quiet place. I am not kidding! There is nothing to do from 3-7! Nothing! 

Off to find the bug and sleep.  Wait.......AHHAHA I found him! Wow he's fast and loud! Sorry everyone...he went to toilet heaven. I am not throwing him out the front door tonght. I don't lnow if I'd make it back up the stairs! I need one of those electric chairs for my staircase.

Ok...thought of the day. Is it aweful for me to ask for a handicap sticker?? I'm 34 & drive a convertable. Hmmm.  I can't walk! How bad does that look if I roll into a blue spot and someone worse needs it. Give me the truth people! 

Goodnight & Love to all

Spring 2013...and more snow?

Yesterday I finished 5 Radiation treatments to my arm. We zapped the tumor that has been bothering me. It hurts more now than  it has over the past few weeks. It's because it's in the bone. It's swelling and has no where to go. Tumors/legions that are in the soft tissue swell and they aren't as painful. For me anyway. I am also using my arm which doesn't help. 

Thank you Paul,Wayne, Mary & my support team for getting me through another fun city Radiation week. Boy, we have been through many adventures! 

I will now wait patiently for some relief.  This pain is aggravating. 

Spring? It was snowing a few minutes ago here in N.Y. 
I do remember having a beautiful Easter outside in the sunshine a few years ago. I am hoping for another beautiful day. We are hosting Easter Sunday and I am up to 18 family members! Don't worry I am asking for help. Paul and I want to enjoy the day and me fussing over dishes is a pain. I know that he is happier when I ask for help. 
He already does the dishes, laundry...and I love when I see him sweeping! I think I have him trained. Is that possible? I don't want to fake pain...but, this is wonderful. 

I wanted to post a great picture of these stunning flowers Paul brought home for me. He picks them out himself at the florist. I think that is so much more special and sweet.  

Off to get a million things done. 

I need to put the Jelly Beans down. Every flavor is amazing. 

Have a great Thursday

It's GLOW TIME again!

Thank goodness my computer and cell phone automatically adjust to day light savings time. I just looked over at the clock and was totally confused. Come to think about it, who does that in cyber world? I would say it's enabling me to be lazy! 

This is going to be a quick blog entry.

My left arm (bone) has been giving me grief. I finally found out why I am in so much pain. I have a tumor in my arm! Can you believe that one? It feels like it's broken. 

I have to patiently wait while the Doctors figure out another plan of attack. When I left the hospital on Thursday I was all set up for Radiation. They started the process and simulation. I unhappily received 4 more tattoos to my left shoulder/arm. They gave me a schedule for treatment along with an appointment for a bone scan. I decided to try a clinical trial instead of chemotherapy. I had a plan Friday. Things always change. The Doctors are talking and that's alright with me. They don't ignore me, they know better! 
I am sort of on hold. Tomorrow morning I will find out my plan. Doing the radiation may disqualify me from the trial. We have to make sure this is done the right way. 

My goal is to get out of pain. 

Oh...Good news. The Pazopanib may have helped me. I am off the drug because of my high liver enzymes. But, my recent scans showed shrinking and stable tumors in my liver, lungs and pancreas. The tumors on my vertebrae and arm did grow. The news that my organs have no growth is great. 

I will let you know what I decided.  
How much Radiation have I had and why am I not a walking GLOW stick?