Friday, May 3, 2013

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


Anonymous said...

goodness, get the handicapped sticker. btw, it is hard to read your blog. distracting background. sorry you are going through so much. so unfair

Jennie's Beans of thoughts said...

Get the sticker! Who cares about what others think?

Anonymous said...

I love you so much. You inspire me in every way to fight and never give up, to be myself and smile.. every time I said I love you, you would say I love you more.. and we would go back and forth.. I miss you.. peace love and happiness

Your lil bro. Brials. Aka smiles. Love you