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? 

The Shuffle

It was a good day.  I have this new feeling of freedom from so many things. I feel a pull, a change. Jumped on the train  and met a friend for coffee/tea at Penn for an hour.  Took a cab to Mskcc for blood and a scan. Then walked 10 blocks to meet Wayne and Mary for a Greek dinner. The Restaurant and food was great. Tasting was a little off. My taste buds are still swollen. It was fresh and delicious. 
Restaurant :  Yafsu on York and 78th Street. Worth the trip. 

That was the short version. Here are some details.

I had the nicest conversation with the gentleman who drew my blood this evening. I see him all the time and we have the best laugh. I think he was reading my mind.  We asked each other how things were going. We both noted that we haven't seen one another for a while. I told him I took a little break until I needed a scan. He opened the drawer next to us. He said, " Only open the draw and let out what you need to. Then shut it. You don't need to spend your life worrying about results and appointments until you have to. Keep the draw shut and you will live your life. This should not takeover your life."

I couldn't believe he said this. Taking that break for a month was fantastic. Now I knee deep in it again worrying. I do have to stay on top of things. I can't hide it in the draw.  Pain makes me see the doctors  more. Everyone knows how it works. Ouch something hurts or you feel something is off. You see the doctor who sends you for a scan. Then you wait for the results. It's the Ouchie shuffle. 

Today was blood work to check on my liver. Last week something was off. I think a new medicine changed my enzymes. I know it's fine...my cute liver. 
Then I headed upstairs to my  MRI that was backed up due to a machine going down. Story of my life. The shuffle and the waiting game. THe 2-3 hour wait! I sat in the kiddie section debating if I should watch a Sponge Bob episode or play with a puzzle. Instead I met Tom. 
A great guy who was at the hospital for the first time. He was getting a scan for his Prostate. You men and this prostate! It's like the ladies version of Breast Cancer. 
I am sure  tons of money will be raised for Testicles now and  we watch Cancers like mine  and others get left in the dust. No wonder all my friends have passed away from Sarcoma or some type of Head and Neck Cancer. Sorry, I just feel like all money should go to research  for all types. Even though I do feel everyone has a different immune system and maybe a special individual cure. That's another blog and hot topic. 
Jessica we have spoken about this (lung cancer) a million times. 

I should get the results in a day or two about my shoulder pain. Blood  results will be in tomorrow.  I will then know if they want me to stay on the Pazopanib. 

I hope everyone is doing good. I know I am happy. Paul is away and I have two dogs cuddling in my bed! They never do anymore. It's just warmer and nice to have them next to me. I feel so loved by them. 

Brain's & Kisses

Is someone screwing with me? Really, what is going on?

When I started the Pazopanib I actually felt great about it. I made a promise to myself last summer that I wouldn't be forced or pushed into something that I didn't feel right about. No more surgeries or trials. It has to be my choice. Listen to your gut instincts. 

I didn't even blink when my Doctor suggested this drug. Why? Maybe because I know there are little options for me. I need to try things to see what works.  But, experimenting like a guinea pig means I need to feel o.k. about it.  I started this drug already feeling exhausted both physically and mentally. I've been feeling more like myself. Now I am back to square one. Being pushed back and hit pretty hard. I just keep thinking that once my body gets use to the medicine, things will change. These night sweats better change. I am sick of doing laundry!

It has a long Santa Claus list of side effects that have been beyond annoying to me.   Why would I just get one? My body likes to have all of them at once! I am back to the swollen tongue and having a hard time eating. I have been brushing my teeth with backing soda and water. Toothpaste burns my little popped up swollen taste buds. Any ideas??? I have really tired everything. Peroxide mix with sea salt (oh the pain) , mouth washes. I even just hang out with a spoon full of organic, raw honey. The worst was the other day when I thought Ambesol could just numb it! People.....don't ever do that! It's like sticking your tongue to a cold pole and screaming! Nothing minty, salty or garlic-y! Tomatoes and  sauce is the worst.  Paul got me gelato, because the cold is good. Soups that are perfect for this snowy time are awful. I am getting back into cold apple sauce. 
Hey....MOM! You make the best. I am putting my order in. Add a little cinnamon.

I  have to talk to some of my SPOHNC friends. I need some other ways to brush my teeth before people stop wanting to talk to me!  Oh boy can I talk! A sales lady in a furniture store the other day handed me a mint! I am going to think she just wanted me to have one. 

The Brain! Abby-Normal! 

The  MRI of my AMAZING brain showed good results.  No tumors and the bleeding is gone. What a relief.  The swelling in my face is down and I am starting to see my  cheek bones. One great thing...I am coming off Keppra! Silly medicine! I am very excited. One less drug running through the halls of my digestive system. I am thankful for a good scan. Thank you Brain for being good. Now tell the rest of our body.

Sweet Heart day is almost here. Have you chosen your Valentine???

Love Hugs Kisses 
Michelle