Tuesday, November 29, 2011

Stick Chair

This is a stick chair at ABC carpet! Not too cozy...but, I was warm and Happy!

I have been waking up again so early and can't fall back to sleep. I have so many things running through my head.  Going to see Doctors...the drive, waiting..is mentally exhausting. I can't even absorb the details. Yes, I write things down. I am starting to feel stupid, I forget everything they say. It's because I don't want to believe what's going on, right?
Today we talked about Chemotherapy. Sniff, Sniff. A pill form and Sutant. Sniff. I can't even type about it.  Just to keep my alive. Right? This is how it works now. Just give Michelle meds to control the cancer so she can stick around. I don't get any of this. What kind of life is this? Miserable....I already see it coming.

December Seventh. Waiting patiently for the last part of radiation. I need this large rib tumor out! It's torturous knowing it's there. Imagine walking around in pain, knowing. I wouldn't mind a nice stabbing right about now. Good old fashion purse robbing.  I'll be in town tomorrow. A couple of good dodgy alleys. Aim for the left rib......go deep it's in the back. Then WALLA...It could come out quicker!

I am in bed with my little one Bandit snuggled next to me. The best things are the smallest & furriest.

I am looking forward to some nice party's this Holiday season. Pushing myself to go. I am excited. I have a few beautiful dresses that I bought and have. Last year there was drama that I am happily leaving behind and thankfully pushed out months ago.  Girls are stupid.  Much lighter in that department. Amazing how your life can change when you clean house.  I may be feeling awful, but I will make an effort to attend all. I like feeling normal and getting dressed up.

I am putting the summer so far behind me.  Everything that it holds. Sadness, disappointment, anger, jealousy, my non-tan and anything else that is negative. Positive...I hold in my heart. My family visiting, Balloon heaven...Kristine and Diane :) Paul taking care of me :) Such a good husband. Girls should be envious!
I still look back at my struggle. What did I go through? Not weeks...months of that. I am still feeling  it in my mouth and skin around my face. I go absolutely bonkers  thinking about what this Radiation does to you. Now I have tattoos all over my body, getting ready for more. I am BONKERS! Why the hell am I not running??? Not, doing this for too much longer. I too have an expiration date.....Chair, beach...alone. That's my goal. Decided the Eat, Pray, Love is bullshit. I want Sand, a great book and Bikini's!

Trying to sleep again.

Thank you to everyone who has donated to Cycle for Survival. It means more than you will know. It's the first time I have ever asked for a donation to help me. A fundraiser to support my rare cancer.

Much Love Michelle

Tuesday, November 22, 2011

Tatoo me

I will start at the beginning and even though I would not like to make this sound so dramatic....it's going to be. 

The nurse's ( all male ...awesome!) told me exactly what was going to happen. It doesn't prepare your body or mind for the discomfort and pain. I was face down on this weird table with my ankles locked into place. They had two handles to grip onto and my face buried in a pillow! It was a mix between The Young Frankenstein movie ( that one is for you Jessica!) and a strange Porn! 
The table was designed to tilt your body, so the spinal fluid moves up and down. 
I didn't even touch the handles.. ewe.  The numbing wasn't bad, baby needles. It was the pressure when they take fluid out and inject in that's strange and slightly painful.  I listened and watched on the screen as they injected the needle, 10 cc into my lumbar.  When they tilted my body, I felt the fluid moving up and down my spinal canal. It was pure torture and pain. I can't even tell you how painful it was. And, they kept tilting me over and over. The fluid just moving.  I cried like a baby. I tried the happy place on the beach. That turned to dust  pretty quickly. I then did what I usually do and what always works. I say to myself," Little children do this! I can do this! I am strong! Children do this!". 

We moved on to the stretcher next and I was told to keep my head down. Headaches. Great just what I needed. This is the best part. Out of all the technology they have. I was asked to roll over three times from one hard stretcher to another. This was to get the spinal fluid moving! I was just hoping I didn't fall in between the cracks of the stretchers. 

They strolled over on the flat stretcher to get a CAT scan. I made Paul move me in the hallway. They kept putting me under the big lights, right in my eyes. Ok....I can't get up because I will get a headache. The light's idiot?
In the CAT scan room I  was asked to roll again three times. 
Just remember I have tumors in my back that are killing me.  Pain medication is now wearing off.  Lights. Spinal fluid pain! 

Third stop Simulation.
I was kind of prepared for this. Maybe not mentally, but I knew what they were going to do. Didn't realize I was going to be topless the whole time! I was now on another table, this time on my back. They made the foam mask for my back. It felt like a warm down comforter molding to my body. Then another facial mask. Oh the love I have for those. My fourth mask. Two in one year! Boy, I am a lucky girl! 
I took a deep breathe and waited for everything to dry. Meanwhile, fluttering around me are the nurses who are drawing with marker all over my stomach, chest and neck. Mind you I am topless and they didn't have a problem working around my girls. They got a lot of action!
I figured out what was going to happen and
I am starting to get upset again. I  feel the tears building. It's hitting me again and at the worst time. I can't speak and they start tattooing my body in five places. Small little dots that look like normal little marks. NOT BEAUTY MARKS! Nothing beautiful about them. I couldn't speak and wanted to scream NO so badly. 
A reminder of my nightmare treatments.  This is real and I have to face it. Something I am having a hard time doing, again. I cry too much. I guess I am facing it. I just still can't believe that this is my life. 

Chemotherapy. Can't even think about it. 
I am seeing another Doctor tomorrow about his plan. Crazy. 

I am sitting in bed and want to scream I am in so much pain. They can up the meds all they want...doesn't help! I am up to 3 patches..and now  I can't get my shirt off with pain in my upper neck shoulder area. Stupid silly tumors. Don't they know that they are going to be destroyed by the evil laser beam! 

I am not scheduled back for the blasting until December 7th. Pain will continue even after treatment. Maybe it's better than 6-8 weeks of hell. Only time and goign through it will tell. 

I am exhausted. Good night to all. Sweet dreams. 

Monday, November 21, 2011

Myelogram & simulation

Waiting to be called in for the myelogram and simulation. I had to make myself look pretty because they are taking a picture of me....extra blush to my puffy steroid face. Really...squirrel holding acorns!
I'm nervous about the spinal injection. I know they numb me, never seems to work or be enough.

Paul is calming me and my friend Kristen took a ride in with us. She had to come in to city....timing was perfect. She is an amazing supportive friend that makes me smile. My day is was already calmer not thinking about the procedure this morning. Brings me peace...and she makes forget about me crap. I love that.

I won't be out of pain until they blast these spinal suckers....really sticking onto my little vertibrea bones. I don't like them.

I am sleeping better. It's amazing not being tired all day. What a difference. Changes everything...especially my mental state. No more coffee for me. I didn't drink it anyway.( sometimes!) Tea lover :) keeping the liver clean

Chemo...next. That we can talk about in my next blog journal. Deep breathe.

Love to all...one step closer.

Michelle :)))

Friday, November 18, 2011

Dashing away

Dashing into the city this morning to talk about Livers! How interesting! My body knowledge is just expanding. As the necrosis eats away at my short term memory, I soak up everything about spinal surgeries, treatments and now liver cures. Hopefully, we will be discussing cures. You never know with this Doctor. That is why my love blogger, Michelle has Three....Did you hear that...THREE Sarcoma oncologists at different hospitals. Not for different opinions. They all say the same thing. Because, one may offer an extra bonus or a clinical trial. One may not stare at you and say, " Oh you have back pain, it will go away."

 I have my sleeping schedule figured out.  " Rub, Rub on my eyes!" I think! Last night I slept very well with little pain. Every day is different and I am just patiently pushing through without complain. Ok, so complain.

Ok...I am off... Dashing. I love this new word. I am using in before Christmas. It's not to be confused with a reindeer.

Have a fantastic, peaceful Day.

Keep those prayers going that my insurance company sees the light.

Sunday, November 13, 2011

Never liked liver!


I have been in and out of bed for hours, trying to get comfortable. The pain has been so unbearable at times. Actually......it's awful all day. It's downright mean and my body stinks right now for hurting me like this! Tonight, it's shooting through the whole left side of my body. The past few days have been worse and I have been taking pain medication to get me through it. As much as I hate taking them, they help. I am so exhausted daily from the struggle of just sitting down for lunch, or leaning over the sink to do dishes. Yes, I do housework! Don't look in the dryer, I can't even fold the lovely spring scented sheets I just washed. Because, I can't bend down to get them out. I have limitations, and I hate it.  I have to stay busy and by 6pm I can't even think about sitting on the couch to relax. That is more like torture to my whole upper body. I eat standing, it's great.
Again, I am sleep deprived. This just leads to a whole mess of emotions.

Tomorrow I start the process of the Image Guided Radiation Therapy. I read the book they gave me. Paul went online to double check the procedure. He did this to put my mind and his at ease. I am petrified. I hate that they are putting a needle in my spine. I've had this done before and I wouldn't say it was one of my most favorite moments.  I was strapped sideways to a metal table while they removed blood from my hand, spinal fluid from my back. Then they did a lumbar drain patch. They inject my blood  into my back to heal up  the spot.  A nice young man held my sweaty hand while I screamed in pain, I didn't forget that! I still from time to time have pain in the area of my lower spine that they touched. Trauma, you never forget. My body didn't.


WOW...I almost forgot the news that you have all been waiting for. My PET scan results.

Doc Bilsky called Friday to talk about my scan results. Everything looked lovely except my  funny looking Liver was lighting up in a few spots. A glow that was significant enough to be a problem and needs to be addressed. It was a nice happy glow "8".
Let me deal with spine tumors and then the liver. Things can be treated and fixed. And If they can't...we join the circus.

This whole out of the head and neck cancer is new to me. I had to figure out where the hell my liver was! Right side of the street! Knowing it's not a local problem for me is beyond frightening. It changes the whole ball game. I always knew that it was going to happen. I thought the lungs, something closer, maybe my trachea, Jaw or lungs.  I forgot about the spine. I have to brush up on my, "Where does sarcoma cancer like to vacation?"  I can't sit back and just think that this is it. It may like to island hop, then I will be pissed. I am not giving it  a boat!

I will deal tomorrow and this week with the Spine. Making a plan to see a few of my many oncologist Doctors that I have.  Dealing with Sarcoma of the Spine and Liver. I wonder what they will tell me. I do know that there are many treatments out there.  A plan of attack needs to be made!


Go to www.cycleforsurvival.org

Co-founded in 2007 by Jennifer Goodman Linn and her husband, Dave, Cycle for Survival is the national, indoor relay-style team cycling event that has raised more than $9 million in support of lifesaving research on rare cancers at Memorial Sloan-Kettering Cancer Center, and in the past five years has funded twenty-five clinical trials and research studies.

That was just a little bit to read about Jennifer and her amazing story. I also have had a connection with from sharing a waiting room for many years. Our Oncolgist Dr. Maki was cycling for her, raising mony for the hospital in which he worked. A cause to get his patients on  clinical trials and  a better shot at cancer free life.  
This year a bunch of cancer support group members who walk the halls of MSKCC  joined forces to raise money for this great casue. We are patients at Memorial Sloan-Ketterin Cancer Center. These donations are going to us! They are helping us! 

I am  Cycling for Survival in  2012! 



To make a donation go to:

1.  TEAM
3. FRANKS CYCLERS  (Frank is amazing!)


Wednesday, November 9, 2011

It's BACK!

Is everyone sitting down? I'll wait. I'll stand...ouch.

I have had about 3-4 weeks of sleepless nights and painful back aches. I tried massage, acupuncture
 (almost killed the lady, so painful), Ice and heat packs. This can happen since  I went back to dancing, Ballroom. I was feeling great and I figured a pulled muscle, maybe a broken rib.  I was and still am dealing with little issues from the summer fun radiation to my face. My energy level has been great and I have been starting to feel normal.  Then this back pain started that twisted into the front of my belly. I swore I had another hernia. I was just about to go back to working out and yoga. But, stretching made it worse.

I was going to make an appointment with an orthopedic spinal doctor on LI.  I knew (& Paul told me over & over) to get it done in the city. Then it's on record and my Doctors have a good scan on file,  just in case if I even needed to look at a reference in the future. I also could use a scan of my body.

That's when I called and  got MRI of the spine appointment with one of my fab doctors at Msk. The nurse didn't like that with all the steroids I was on, I still had pain and inflamation. I shouldn't have that.
I went in on Thursday at 10am.  After the scan, I walked my way up to  the Mskcc main building to get my results.  I was trailing the beautiful aroma of Ben-gay ointment all over the city. I smelled so nice!

My lovely Sarcoma Cancer non-friends have metastasized into my back :(

I have three tumors on/in the bone. Two little ones and a medium size on the lower back that's attatched to the rib cage. That's the one that hurts so much. The pain is unbearable. I haven't slept in weeks and when I do I have to sit up. It's so hard to do anything, sitting is awful.
Pain managent dropped in and I have been dealing better with it. Ok...that's a lie...I told them what to give me! Want to hear my nightly routine? Paul puts Lidocaine patches on for me so I can get some sleep. I have a pain, sleeping pill mix...with Ativan, Lyrica, Mobic, steroids....All of the above! I barely take the pain pills, they don't work. But, my friend and support told me how to take them so I stay out of pain. I am listening!

Learn about your medication. Ask the nurse what it is. I google everything and try to figure out if it's worth taking. Sometimes to many meds together, don't work. One pill sometimes does the trick. Unfortunatly, I have brain, inflamation and pain issues! But...I know the Ativan will knock my butt to sleep. So, I don't take the sleeping pills.  I drink sleepy time tea with Melatonin. Steroids I take during the day...they make me hyper at night. Same with the Pain pills. It's like caffiene in my system.

They also gave me something to balance....My white cells were off. Where are those perscriptions? Paul. Meanwhile...I will be balancing all by myself.

I am looking in any new or old ways to cleanse and to keep my immune system up. Nance sent me a great link about Natural oils that break the blood brain barrier and can cure :) I will post the link. Any suggestions out there? Willing to travel for some good body energy.

Image Guided Radiation

I may be starting my tumor removal on Monday. Dr Josh Yamada will be performing Image guided radiation on the tumors and making them POOF...dissapear. It is an amazing non-surgical procedure.

Google this, read and tell everyone!!        image guided radiation, Mskcc

Bloggers & friends, please pray that my Pet scan is clean. I may not be NED anymore! Actaully, I never was. Funny...I told you! It's the pathetic waiting game and I wasn't wrong. My poor body just won't fight! I knew I was off. That is why I fought for my Doctors to pay attention to my head and look....I was right. I hate being right.
I will not be taken over by my stupid  body cells that refuse to listen to me! Ned will happen again, oh yes it will.

I didn't blog about this right away. I should. I get so much support from all of you. My dilema, maybe you can help. I know some close friends that read it and I wasn't ready (and still not) to share. How do you continue the best therapy...blogging without dealing with the annoyance of a town news flash? I only want and wanted to tell those close to me.

The saga continues..........