Tuesday, February 26, 2013

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. 

Sunday, February 10, 2013

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 

Friday, February 1, 2013

Pazopanib kicks off the New Year!

Michelle took a little brake from everything and enjoyed life for a while.  I was able to take a break because  I needed some time to pass to determine if the radiation worked and to see if anything shrunk/spread. I began my trip back into the strange world of Sarcoma. 

Checkup & Scan 

My liver tumor shrunk! It's  from the radiation treatment I did in October. That was really nice to hear. We know that radiation works to help shrink and hopefully kill these things inside me. 

What did they find this month? Let's take a guess. Why is it that I don't get upset anymore? Am I  that numb to  my cancer spreading? I  always say, " It could be worse". Then I think....Umm it's not that great is it?!!! 
I do have some more tiny tumors in the liver. A few more spots in my lungs and they think in my Pancreas. We are going to watch that one very closely. This year I have newness in my Pancreas. Great! That's all I can say about that. 
The tumor on the vertebrae ( T(9) , rib cage got bigger and has been hurting so much. I knew that one grew, I could feel it. I tried another ( 3 times a charm!) Nerve Block  last week. The tumor is just loving my nerve. If I don't get relief they asked me about having a pain pump. Has anyone had one? I believe surgery is not an optiion because it's close to the spine. The other spinal tumors are the same, no growth.  

What's next??? 

My Oncologist recommended a drug called Pazopanib. I take pills at night before I go to bed.  Tiredness in one of the side affects. It's nice to sleep and not feel the exhaustion during the day. I have had so much energy. High blood pressure is another. I take it everyday and so far I am still my normal low. The other day I felt uncomfortable pains in my fingers and feet. My fingernails are red and feel bruised. It's like walking on blisters. Oh...and I feel like I am going to throw up every day! Mouth sores are fantastic!  Side effects are awesome. 
Paul and I  went to Commack, MSKCC for blood work today. They need to keep and eye on my liver. We don't want anymore damage to my poor body.
More Doctors next week to go over more scans. 

Hairy Details

My Hair is growing so fast. It's baby soft and curly! I have been playing around with it and trying to make it spike! I got tired of the wigs and now just wear hats. I am starting to look like myself again. It's nice to get back into the groove of living a normal life. 
I just wish I had normal people around me! Wait, that would be boring. I do love my unique blend of friends that cheer me on. 

Juicing so much more and eating better. I think my freezer has about 5 different organic veggie soups! I wanted yummy things to keep me warm during the winter days.

I am happy that there is a drug for me to try and let's hope it works.
Have a Happy & Healthy New Year!