Tuesday, December 27, 2011


The JOLLY days of December! 
Merry Christmas & Happy Chanukah. 

I think Paul and I just recovered from the Christmas weekend. I have such a great time every year....this one was a little different. For one, I feel awful. Driving around Long Island was not the greatest for me. There was no pressure from our families. If I wanted to sleep all day, it would of been fine. They understand. It's me that over did it. I was completely exhausted Christmas Eve getting home super late. I felt it creeping up all day. How many times can you swap out the pain patches and move them around. Christmas morning was nice waking up and enjoying the moment with Paul and our doggies. It really is may favorite to curl up on the couch with the tree lit. 

Moving on... all the decorations are down and the tree is getting kicked out on Friday! 

The New Year is beginning. It's also the first time that I don't believe that a new year will bring better things. I need to make things good in my life. I make my path. It's not the year or date, a number change. It's me that makes the change. Some things we can't change. Roll with the punches and try to smile. That's with everything. Our daily choices, diet, negative energy, positive energy...all the decisions we make. 

Do not go where the path may lead, go instead where there is no path and leave a trail. 

I think I need a new pair of heels. They make me smile and I need a new pair to walk around the house in. The weirdest things make me happy. 

I thought my throat was getting better. NOPE! I just tried to eat and it hurts too much. I force myself because I don't want to be hungry. Right now, I give up. I would rather be hungry. I have been getting shakes down with my good vitamin mixture. I am not malnourished or lacking anything. I just can swallow whole food. Soft with sauce or something that can coat my throat. 
My back and rib pain is worse now than it has ever been. Tomorrow will be 3 weeks since I had my first treatment. Last night was one of my worse nights. Paul begs me to take the pain meds. I have been trying to avoid them. I am back to loving them...my friends. They also keep me home more and I relax. 

Frank you are so right! Water is the worst...actually most liquids are. I wish every restaurant had milkshakes on there menu! Ok..coconut, almond milk shakes. I started traveling with them. I premix and take them to go. 
Please! Please! I need some love and good support sent to my friend Frank. He is my SPOHNC buddy & Cycle leader and is going through a very tough time right now. Dealing with a very difficult change in his life. Just know that we are all here for you. You may feel alone.....but you are not.  I , WE have all been there.  Maybe not the same...but many have been. Cancer will not define us! You are allowed to be upset....go with it. This totally stinks for you right now and will for a while. 
Frank....we can head south and just tell the Doctors to go away! I have a passport that could use some stamps! 

I will post in a day or two about my 2011. What I learned in a year! What I wish I could have avoided. 
This will be fun and I'm not holding anything back. Stay tuned. 

Love & Peace,
The Grinchness
MichellefromLongIsland (love this)

Wednesday, December 21, 2011

Blend it up Baby!

Holy........you know what! The doctors were right about one thing. Give it two weeks and the side effects will kick in.  I can't even drink water without the feeling of choking.  I have thrown up almost everything. That feeling of something getting stuck in you throat, ten times worse. Like razor blades going down and then Crap it's stuck and you can't swallow. I have been using the lidocane, mallox mouth wash. I put it on a spoon and let it glide down my throat. YuCk! YUck! YuCK!
My back feels ten times worse than it did when the tumors were there.  I am still using the patches all over, its the only thing beside Ativan that gets me to sleep. They must be really pissed off. My nerves are like lightning bolts of sharp pains. I have never felt so awful. Wait....Boston...Chemo and Radiation combo, that was the worst. I would take another brain surgery! When will it end?? It's been months. Could you beleive I was stupid enough to think it was a pulled muscle! I was so stupid. My stupid bones and liver! 

Eating.....I am getting use to it and finding things that work for me. Frank, I know you said don't worry about my diet.  I have to worry, because my body isn't use to eating somethings.
I can't do it anymore! I tried the milk thing...yuck. Ice cream ( Rocky Road was my best friend) and anything like it makes so much mucus and my mouth is worse. 
I just finished treatment to my face and I am still in recovery from that. I have so many issues.

Coconut milk (yummy), frozen fruit, banana....that's a nice blended breakfast.  I made taco's! Remember this is all made possible by my magic bullet! Black olives, cheese, veggies and sour cream ( I need it to mush and help swallow), in a bowl. Yummy. Earl made me yummy soup. Kerry Ann made me...what are we calling it?? Veggie happiness. Tonight I mushed some  brown rice (bad idea, gets stuck) and slowly chewed edimame until it was mini to swallow. 

I know understand what it feels like to not be able to eat. I have dropped  a few pounds this week. Dare I tell the doctors? They are still trying to figure out why I have nickle size bruises all over my body. I just got one on my hand. All over one side of my body. It's really strange. 

I keep thinking about what to do now. Chemotherapy? My poor body! Why is this happening, when do I get a break?  I can't even hold the tears back...I just want to be left alone. I feel helpless about this decision. I want to do nothing. I am doing my Cellect everyday, 4 times. ( go to bottom to get Cellect info) No more coffee. I eat good. Lot's of supplements. I will get off this gross medication when I am out of pain. I cleanse my liver with teas everyday. Wellness center helps with digestive stuff.  I have to find something else to keep my energy & immune system strong. I can't control the cancer if it spreads. I can't fix myself! When people ask what my plan is I try to ignore it. I don't want a plan or another pill schedule.
I am getting these stupid 5 dot radiation tattoo's off of me. They are small, little reminders and I hate them. 

AFM...Fart Man...Buddy...I am doing good. Getting through it. Thanks for checking in with me. How are you doing? 

Christmas Weekend
Tomorrow my brother Robert is graduating from the NYC Police academy! Congratulations! It's so amazing and I am the proudest sister! 

I am working Friday at Rexer Parkes in Huntington if anyone wants to visit or shop. I can help you shop! Beautiful women's clothing and we now have Custom Tailored Men's Wear by Josephs. 

Saturday will be another long day. Looking forward to spending time with my family, everyone will be there. Happy Birthday to Brian! My brother was born on Christmas.  Double the gifts. Then we will head to Paul's brothers house  to see everyone too.  Our nephews have gotten so big. I can't even shop for them! Toys are not even a thing, Cash! Perfec, I have no idea what ot buy for anyone any more. That's why no gifts is the best idea. Just food and laughs. Blended of course. Great for me! This really stinks! Really! Thanksgiving I had no taste buds and now this! UGh! New book idea , "How to keep a  cancer girl skinny! " 

Sunday is relax day. Christmas morning is my favorite. I love waking up and being super excited and I am not sure why I still get that way. It's exciting. The build up till Christmas, the tree and stockings.

I keep busy, better than feeling the torture inside of me. I smile all day...I am living!
Pain medicine will be my holiday eggnog. 
A new year of nothing but making it about healing me. 

Check out me and my  Cycle Team!  Franks Cyclers are kicking butt! I have to get my outfit ready for cycling in FebruaRy! I will make sure everyone has the deatils. I am floored by the love and support. 
Copy and Paste:   http://mskcc.convio.net/site/TR?pg=team&fr_id=1602&team_id=16652

Goodnight Everyone :) The biggest Hugs

To learn about CELLECT
Call National Cancer Research Foundation. 
www.ncrf.org or toll free 1-877-cancer-free or 631-584-3100 (Ny Call)
It's a powder I take with a ton of good things. Worth the call, ask for Steve. 

Monday, December 12, 2011

Tumors are gone! Blown Up!

I woke up in the morning to two beautiful pink roses next to my bed. My husband picked them for me, December roses in N.Y. I don't know how I did. I couldn't of gotten through the past month without the patience and love from my amazing husband. I have been unbearable at times.  Pain running though my whole body. He covers me in pain patches at night and tucks me in. He has to listen to me cry and wimper at all hours, waking him up. I am still doing the same routine of it, yet I feel calmer knowing it's coming to an end. Spinal tumors are gone...poof! 

Paul and I had a Christmas , Holiday Party Saturday evening. I was so happy to get dressed pretty. I wasn't going to let a silly treatment hold me back! It's nice to be able to enjoy life. I had two pain patches on under that dress! 

I had a very emotional , exhausting week with the radiation treatments. I was so scared that it was going to be painful.  They did tell me that I wouldn't feel anything. From my radiation hell background, I knew this was true.  I did feel nerve twitching and that was annoying when you can't move. 

Where do I begin.... Wednesday I got myself to a very calm drug overload. One of the doctors spoke with me on Tuesday to go over what I would be doing. It was over an hour on the table. Twenty five minutes of the treatment to the lower tumor on my T9 vertebrae.  I was so exhausted, I feel asleep. Twitching nerve feelings happened towards the end and woke me. I held back tears, I hate when they fall down the side of my face. I want to wipe them so bad and I can't move. My hair gets all wet and once....right into my ear. Tears in my ears, so very annoying.  
Paul and I got dinner after at our new place in Flushing, Korean Bbq.  I really hate trekking into the city just for doctor appointments. Grab a tea.... a stop at my favorite store, Anthropologie.  Paul made it a nicer day. Wiped my tears and was so supportive. 
Yes, I cried most of the day. I still couldn't believe that I walked into a room, fell asleep and WOL-LA, Tumor was exploded! Amazing. Overwhelming. 

Friday was the same kind of day. Treatment on the table was the same, 25 min.  This time  I came home and slept for hours. 

I was told that I would still feel uncomfortable for sometime.  It takes time for the pain to go away. Nerves are involved.  The tumors are dead, dying. I think of them like mini chocolate lava cakes. The melty ones in the middle you get at a restaurant.  When you put your fork in it starts to fall apart. I was thinking the tumors getting zapped are dying from the inside out. Takes a little time for it to disappear and my body is absorbing it. Tumor, not chocolate. It actually grosses me out. I am overdosing on Charcoal supplements. Yuck tumor in my body. Where is it going? 

I have been having more pain in my side and back. Different pains. The radiation field, 6 beams went through my body to get to the middle of each tumor. Doing this will  hit other areas. My lungs were touched and my throat, tracheae. This will cause a sore throat, problems swallowing, cough, feelings of a cold.  I feel stinky when I wake up in the morning.  Froggy and Groggy ( for you Paul) . The last few days I have been wiped out. Today I came home after being out only for a bit. I needed to relax and do nothing. My body was yelling at me. It's always yelling, I just don't listen.

That was gross...I just coughed up something beautiful! I am so disgusting.

Healing beautiful energy into my body! Loving every inch and feeding myself goodness. Peaceful days :)

Jingle Jingle!!!   

Tuesday, December 6, 2011


 Blogger Buddies!  I love all the comments and meeting new friends.
 Hello my Texan friend, Welcome. 

Tomorrow afternoon will be my first of six appointments that will continue over the next two weeks for the IGR. 

Nervous, petrified, alone....scared....just a few words. I am scared  to death. I just want a hug. 
I thought I would be happy that the day arrived. I don't even want to go. I know I will start walking through the halls and try to turn back. I am only doing this because I have pain and I want some relief.  

I am tired of pain patches, medication and heartburn! 

I taking a break after this and letting my body heal. I know I will get mixed reviews from friends and Family. I am exhausted! My bones, muscle.....every inch of me is screaming for a break. Back to back radiation is not good for my body. It can take years to recover.
I have been on a constant,"Lets kick Michelle down and beat the crap out of her pretty little body).  I am sick of everyone saying I look great!  

Look inside..  I am a HOT MESS. This is what I told Dr. Maki yesterday when my chart said diagnosis was  Sarcoma.   HOT MESS with a side of Sarcoma!

Wish me luck
Love a nice pretty girl who is a HOT MESS!

Sunday, December 4, 2011

Three more days

I have nothing to write about. I have been in so much pain. It wraps around the whole left side, constant!
I feel like my ribs are broken. Three more days....and I was told that even after the tumor blowup it takes time for the pain to go away. My whole month of December will be spent at the hospital dealing with my spine....." my bone cancer." Ha! 
I can't do this anymore...I cry (like now) all the time, it just hurts so much.  I am very good at controlling  the agony. Keeping my mind busy....but it's just there all the time. 

I am seeing my other Oncologist tomorrow to talk. Very different opinions from all of them. Not really sure what my plan will be. Not even thinking about it right now. Absorbing some of it.

More positive blogging tomorrow. Very sleepy. 

Saturday, December 3, 2011

Cycle for Survival 2012

Cycle for Survival 2012

Dear Family, Friends and Supporters,

Many years ago I was diagnosed with a rare form of Sarcoma Cancer. I am writing this letter to bring awareness to Rare Cancers and help me reach my goal while I Cycle for Survival in 2012!

Cycle for Survival is the annual, 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 Center, the nation’s preeminent center for cancer research and care. Research on rare cancers is often drastically under funded resulting in fewer opportunities to gain essential insights- the type of groundwork necessary to make new, lifesaving advancements and discoveries. In general there are fewer treatment options for patients with rare cancers because funding for drug development often lags behind more commercially viable drugs. Go to www.cylceforsurvival.org for more information, read Jennifer’s Story and the History of Cycle for Survival and studies.

For many years I have been walking the halls of Memorial Sloan- Kettering, my journey starting in 2002. The past few have been the real battle for me, testing my strength. My husband Paul, family and friends have been right beside me pushing me along, helping me through the struggles. Smiling on the great days and thankful for every moment I have been given. 
I am currently treating my new diagnosis of a rare Sarcoma metastasis to the spine and liver. Although I will be undergoing treatments, I am very much dedicated to cycle on February 4th, 2012 at the Equinox, Long Island New York. Together with my fellow Cancer survivors and fighters we are making a difference. We will not let anything slow us down!

Michelle’s 2012 Cycling Team
To make a donation, please copy and paste


You can also look under current teams, Franks Cyclers. You will see my name to donate.

Thank you for your love and support. Your donation will go a long way in helping find a cure for these challenging diseases.

 From the bottom of my heart,
Michelle Sabella Paternoster

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..........

Friday, October 28, 2011

Doctor Bully & Exhaustion

I don't think so Doc!

We've been sticking up for ourselves since we were little, getting pushed around on the play ground. Why do things change as we get older? I am sitting here blogging looking at an outpatient survey that I got in the mail from the hospital. I have filled them out before, honestly and returned them. 
Today is a little different.  

Today I made the phone call to gather my troops. I did what all patients MUST do when they feel that things are just not right. I don't feel good!  My body is telling me that something is wrong. Yes, I may be NED. That's fantastic....but, I don't feel right.  It may be that I have been pumped with more drugs to balance me out. My poor body and my brain is so tired. 
What's even better, the hospital gave me the wrong medication dosage to take daily! You have to love the local ER!

Was the last head-pain-trauma-ache from lack of steroids or brain swelling?  I want an answer. I want an MRI.  I am not waiting until November 14th to see the Dr. I will get this done sooner. This is my life, I am NED and will stay NED! 

Why the heck did my Neurologist put me on anti-headache migraine meds (when I clearly stated NO). Why did I let him?? Because, now when I said I don't want to be on them.... I have to wait. I may get a seizure. What? I have never had a seizure! Why the heck would I get one now! What is going on! I am a Fu**in guinea pig to some of these doctors! 

Today an email went out to my Neurosurgeon, My Head and Neck Surgeon, Radiologist...maybe even my Dentist. I want everyone to figure me out! Get me a scan. Find the problem. I will not sit around and wait for another in the middle of the night attack. 

I am already seeing my vision getting blurry...off...I know what happens next. 

Be your own Advocate! Speak your mind to your doctors. Don't be scared. Tell them how you feel and if one can't help you....find one that will. 

Now my anger has turned to sobbing tears. I am letting this take over my life again. I thought getting passed this summer would be  great. I started to dance again. I got my eyebrows re-tattooed. Yes, I lost one during radiation a few years ago. It was so traumatic for me. 28 years old and one eyebrow. Sounds silly, but you really don't understand that our face says it all. For a head and Neck Patient, Survivor, we struggle with our appearance. Scars are more visible than those on a breast or belly. I have them running down both sides of my ears, neck. My port scar, the 10 inch beauty on my stomach. Beautiful reminders....battle wounds! Red burn looking marks on my forehead and eye (bloodshot) from treatment. Bumps, pins and screws sticking out from surgery. 
I'm crying because yet again I am at a standstill. I am cancer free and still weighed down by this horrible disease. It just lingers in the air. 

I don't want to be tired anymore. 

Tuesday, October 25, 2011

Eat a Banana

Another one....

I was so super excited yesterday leaving the Neurologist. I came home and started to blog about how happy I was that I was OFF the  crazy steroids. I was finally feeling like myself again. 

All good things come to an end....  

1:00 a.m.  
I woke up with yet another extreme headache. The same screaming kind, and I can't even move it hurts so much.  I tried the medicine the Doctor told me to take if I felt a bad headache coming on. But, this wasn't even close to a bad headache...this was worse.  Paul called the Doctor and after some time we agreed that I needed to go to the hospital. I just couldn't make the 45 minute trip to the city, to MSkcc. I went to Huntington Hospital instead. I don't even remember getting in the car. It was a quiet night in Emergency.  Within minutes they had me hooked up to an IV.  They gave me 10 mg of steroids, a little nausea med and happy morphine. I had relief almost instantly. They  also gave me a CT scan.  Then sent me home to sleep and to continue on steroids! 

It was a very long morning. I am feeling better, just exhausted. Back on steroids :(  I have to figure out what's going on with my brain. It's not happy and it's making me miserable. I can't keep having these silly head pains. They are so awful. 

P.s. My potassium is low. 

Wednesday, October 19, 2011

A Letter

Dear Everyone....but Cancer, 

I am so happy that I am almost off the steroids!  I am down to  taking 1mg a day. That's nothing compared to the 12mg I was taking  a day! 
I haven't been getting headaches. As much as I have been dying to get off these meds, I have been a little scared. 
I see the Neurologist next Monday. I will talk to him about a future plan.  Notice how "I " will be making decisions about my brain and the drugs I put into my body. I haven't been too happy being on all these drugs (even though they helped)  the past few months. 


A Doctor was at the  SPOHNC meeting talking to the group about Radiation treatment/side effects on head and neck patients. Most of what he was saying, I have experienced.  It was the recovery part that he spoke about that made me smile. Which is funny, because it's my third time doing radiation. I guess my brain just put up a wall and I forgot how uncomfortable it was. When your doctor tells you that you are doing six weeks of treatment, you don't add on the extra weeks for recovery. But, we should add it on. It's important to take our time to heal. 

I am still having issues with my mouth and it's been 2 months. My doctor told me to give it 2 weeks!  I'm just starting to get my taste buds back. At night my mouth is so dry and it's the complete opposite during the day.  I don't have any pain, just little twitches in the area where the nerve was radiated. My teeth are ultra sensitive and cold things are bothering me.  

Cancer Care

I went on Monday to the Long Island office to talk with a counselor.  I filled out a questioner and then sat with an Oncologist Social Worker for about an hour. She asked me a dozen questions. We talked about my diagnosis, the feelings I have against cancer and few other cancer questions.  She asked me at the end to do her a favor and to write a letter  to my cancer! WHAT! To tell my cancer how I feel. I had a big problem with this. At the time I wasn't sure why. 
I  realized driving home that this place wasn't for me. Maybe I needed to see a different social worker.  I believe that Cancer Care would of been great for me years ago when I  newly diagnosed. Not at this time, I am past the Cancer letter. I have been dealing with Cancer for way too long to take the time to write it a letter. Does it even have an address?  What is it like Santa?  Instead of Coal, you get radiation burn! 

I am not saying that it won't be right for anyone else. Please..... Go...try. You may find a connection and it can help you get through a rough patch. They have group sessions too. 

I hope everyone is having a wonderful week.

Peace and Love

Wednesday, October 12, 2011

Travel Blog

This is fun....I am travel blogging from my dermatologist office! I got sick of looking at my fifteen year old acne skin and called this morning for an emergency appointment.
Ok...let me tell you how to do it. I call a few days before the weekend and beg to see the doctor. I explain ( fib) that I'm in a wedding this weekend and totally broke out and need help! Always works! But, now when I see him I have to tell him the truth about the nasty steroids. He knows I don't usually look like this.

I will be waiting to hear back from my oncologist about the clinical trial. She is going to test my tumor ( a frozen lump that I have stored at the hospital) for this certain protein. She will present my case to the board and will call me in ten days. Which really means, I'll be stalking her in ten days. I left the room thinking...ugh aren't you running this trial?

I'm 33 doc, give a NED girl a chance!

I did some research and other hospitals are running the same trial. I am sending out emails to see if they started and if there's any room for a beautiful sarcoma free NED like me!

Tapering off the meeds. Maybe a clinical trial. Meeting a therapist from cancer care. Meeting tomorrow for SPOHNC. Hopefully clear skin soon. Feet are still numb :( oh, I get my massage today. Things are getting better, my body is getting stronger.

Thank you for all your emails, blogs and support. They mean a ton to open my computer and read so many wonderful words from people I don't know or have met once.

Hugs Ned

Monday, October 10, 2011

Vaccine for Sarcoma

Blogger Buddies

City again tomorrow....for something good.  I will let you know how things work out.
I am seeing one of my Oncologists  at Mskcc about a clinical trial that I really would like to be a Guinea pig for.

I am feeling better about being NED. It's wonderful to get great clean news from the doctor. I have this fear always floating around me. I usually get 3 months tops and then I am back on the operating table. Bummer :( Thinking positive.  Because, like most of you know and have posted/blogged back to me, we have to love the momemts of a clean scan and live everyday to the fullest.

I am throwing myself back into Ballroom Dancing and loving it.  Staying busy... decorating my new beautiful home. Enjoying this beautiful Fall weather.  And now that I am 10 pounds lighter, I got to shop for new clothes, pants!  That's fun!

Hugs, Peace and Love

Trivalent Vaccine for Sarcoma
MabVax Therapeutics is actively recruiting patients for a Phase 2 sarcoma vaccine trial who have recently been treated for metastatic sarcoma and whose status is “No Evidence of Disease” or NED. The patients in the study will be randomized to receive either a vaccine that is combined with an immune system stimulant or the immune system stimulant alone. The immune system stimulant is called OPT-821 and is an immunological booster. If the trivalent vaccine can stimulate the patient’s immune system to develop antibodies which recognize and target the GM2, GD2 and GM3 sugars that are over expressed on the surface of most sarcomas, then the patient’s antibodies could attack and kill any remaining sarcoma cells potentially preventing the recurrence of sarcoma. For more information about the trial, please visit the clinical trial overview.

Thursday, October 6, 2011



I had a  CLEAN SCAN !!!!!   

I was trying think about how to start this email. Getting the drum roll going. Maybe blow up some balloons (kristen knows I love them).  But, heck...you guys just want to hear the good news.

Last week my Radiologist informed me that after 6 long weeks of treatment on the nerve in my face looks great and so far clear of tumor. I go back in a few weeks to double check. 

Tuesday I had my Neck MRI in Commack at 8am.  Then Paul and I drove our  little butts into the city to see Dr B. He's my Head and Neck Surgeon (love him). Paul and I laughed because we was dressed liked a priest! OR could of been a Ninja. 
He was able to only look at the films because,  radiology didn't finish the report.  His words to me, "I am really surprised to see no findings of tumor anywhere on these films." I know we were all shocked. Those pesty lymph nodes in my neck went away. 

I haven't had a clean scan since 2007

You can now start calling me NED. NO EVIDENCE OF DISEASE! 

If all works as planned. I am trying to get on a clinical trial next week for Sarcoma. You need to be free of disease. This could be amazing. 

Why do I still have such a hard time believing that I could  ever be cured? I feel like I'm not that happy. Because I've heard this before. And, two months later I was prepping for Brain surgery. 

You can get wonderful Cancer free happy news and still feel like the loneliest girl in the world crawling up the mountain alone. I just feel like I'm allowed to take a quick brake on the hillside before the thunderstorm. I want this to last and I want my life back. And I know it won't. And this makes me sad. This is why I feel Lonely. I know many feel this way and I am not alone. 

It's just always there in my head, no matter where I go or what I do. Stupid Cancer and the fears. 

I started Ballroom Dancing again and even did a little show case kind of act at a restaurant. We got a round of applause. No toes were stepped on!  I had a blast. 

Goodnight sleeping chickens

I'm actually getting tired! 
Peace, love and remind yourself of what's important. 

Thursday, September 29, 2011

Steroid Support Group

This is my new support group to talk about my new drug that drives me bonkers! I am sick of apologizing for acting like a crazy lunatic...but really people.....try a pill!!!! 

Group in Session

Michelle The President (for now)

Drug Dexamethasone - Steroid

Dexamethasone, a corticosteroid, is similar to a natural hormone produced by your adrenal glands. It often is used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Dexamethasone is also used to treat certain types of cancer.

  • upset stomach,stomach irritation, vomiting, headache, dizziness, insomnia, restlessness, depression,anxiety, acne, easy bruising, irregular or absent menstrual periods,skin rash, swollen face, lower legs, or ankles, vision problems, cold or infection that lasts a long time , muscle weakness
    I shall add snappyness and bitch like remarks to all!
    If anyone would like to join. There is no fee and complaints are welcome. 

Wednesday, September 28, 2011

GoodBye Today, See You Tomorrow

What a medication adventure.  I have never felt this way before in my cancer career.

It has been a very difficult time for me. With all my left over energy I  just try to keep a semi normal day going, its tiresome. I can't keep my eyes open.
I really am so happy that the steroids have controlled the horrid brain swelling, vision problems, vertigo and most of alll the killer knife machete head pains.  

My poor body is braking down so fast and I feel that everything that I add to it is not strong enough to balance me out internally.  I'm juicing, eating veggies, salads and eating good healthy meals for a healthy immune system.

The past month has been pretty much the same.  Wakie Wakie between 4-7 am  Hyper all day, followed by a couch lunch time nap.  Again... 6mg steroid in Pm.  Antibiotic because my immune system is broken down and I can get pneumonia very easily.  I started a  Caeser -Migraine pill every day to help with the headaches and nerve/eye issues. Add sleeping pills to the sheep and lambs that do cart wheels in the other half of my brain. Of course a normal  33 year girl would go nuts  with out her nightly prune juice, miralax drink :) 

I basically feel like I am constantly dipped in and out of a pot of Starbucks coffee! My heart is constantly racing and my intention span is.....ugh I don't have one. My jaw hurts from talking too much! I am sick of apologizing for my rude outbursts...or what the doctor told me last year, the radiation desttoryed my "Filter" 

My Neurologist did drop me down to a lesser dose of steroid over a week ago. I made a phone call today and explained that  I don't think I can keep doing this for a month till my next appointment. The happiest nurse called me back is letting me taper down the steroid and see how my head feels. I am very nervous. I was in so much pain and can't even imagine getting to that point again. Any twitch and I popping them like pezz candy!  I also learned from the lovey nurse that the hospital gave me the worst instructions! Don't take the steroids at night! Really! Breakfast and Lunch. 

Urgent Care is my #1 Speed Dial

Radialoist News from Todays Appt

The scan looked great. The nerve looks nice and the Radiation seemed to have worked :) It's still a work in progress. I have some tightness in the area, normal. I will see her in two months. Have a few more scans and hopefully  we will see full positive improvement as time goes by.  It needs to shrink back to normal and let's pray it didn't spread anywhere else. POSITIVE!

I am concerned about my Brain and the Necrosis. I am scared that the swelling is going to be something that I have to deal with forever. Which means head  & nerve pains and daily medicince. I just don't want to be a paitent. I don't want to be on medicine. I don't want to have cancer anymore.

The Pill Box!

Knowing I have been able to handle my body with natural beautiful earthy ways, it's killing me to live with a SMTWTFS Blue plastic box filled with pills! 

That's my Medical Journal! Other good news...Paul and I are looking forward to getting back into our new renovated home! It's been a very long, stressful summer. Tile, Furniture, lighting...all the fun stuff is keeping me busy. A little dizzy too!  I am very excited! I want Paul to have some happiness and not worry about me so much. Easy to say...but he always worries...because he loves me so much. Awe. 

SPOHNC FOR A CURE !!!!!!!!!!!!!

Please join us!!!!   TEAM SPOHNC   I will be signing up and would love for my friends, family and love Angels to donate to an amzing cause!!!! 

Please go to the website cycleforsurvival.org and look for Team Spohnc for more information on how to participate and how to give donations.
I will be sending out emails and updates in the next week or two. I would really apprecaite the support and my fellow fighters would too! Every DIme helps. I don't think people really understand the impact that Cancer of the head, oral, mouth and  neck   have on patients and our loved ones!  It's not only visual and  emotional...but we get silly issues that are damaging. Support for a cure..HELPS!  Thank you for listening to me. 

I love all of you to pieces. I have such tough days, but know my life is a blessing and I am grateful. I cry because I am sad, and for the good things too. I picked some beautiful September flowers that were wilting and thought....hey...they still need to be in my home being adored. I am wilting, but I will stay precious to myself. Stick me in water and I will keep blooming, and make a room pretty. 

My Blood is still pumping gently along my pink heart and 
Every day  I awake is a box wrapped with blue ribbon filled with love....and 
hopefully a pair of new shoes : 

Goodbye today, See you Tomorrow
I love my husband