We shall find peace. We shall see angels. We will see the sky covered in diamonds.

Chemotherapy, Great wigs and A Puffy Smile!

2012-01-29T19:18:00.000-08:00

I wish I had better news to share. I can't believe the strength I have to get through these horrible, exhausting doctor visits and scans. I am still completely wiped out. I wish I could be in bed all the time. My swelling pains are better! Things are detoxing out of my system. Perfect...now toxic chemo enters. I shake my head in shock. It's kind of funny now! Let's just keep kicking Michelle down.

My new scans showed growth. They found another lesion/tumor in my liver and a new one in my lung. I also have a blood clot in that lung and have been taking daily shots in my belly of Lovenox. I am a pin cushion.The spinal tumors are still acting funny. The larger one in my lower spine has shrunk, great. Then I have the two higher ones. One of them got slightly larger. It's still early to tell how the IGR effected the tumors. Sometimes tumors swell from radiation before they shrink down. We will scan again in February and wait for better results. Hoping some of the pain will soon subside. That would be nice.

I was happily introduced to my new fantastic Oncologist, Dr. Shwartz. Chief of Melanoma and Sarcoma.
www.mskcc.org/cancer-care/doctor/gary-schwartz. Here's a link.

We were so impressed with him. Not only does he have a wonderful demeanor, but he came in the room with a plan. He did his research on me, a thorough background check. Like a stalker and I loved it! The plan is not to keep tumors at bay and watch them stay stable.We are trying to cure me. To kick this cancer out of my body instead of the watch and wait game. He went back and read up on the tumors removed. Basically, every pathology came back with the same kind results that gave him the confidence on the type of Chemotherapy to administer. So, I am starting chemo :( I am not upset about it the way I thought I would be. I have to do something and I feel trying this is a positive thing. Whatever the outcome...I need to try. My body will heal. It will be difficult. I will be strong and get through it....I will!

Thursday, I will start my first round of Chemotherapy in the city. Then I will wait three weeks and do another one. We will then scan and see if there is any shrinking or a change. If so, I will continue on and kill it all!
It will hopefully be a great day for me and all of us.....It's Ground Hogs Day! No Snow Please! We are already closer to spring. I know it's been a wonderful Ny winter, warm. But, please let's get going. I don't like the snow! I spent this morning on the beach with my dogs running in and out of the water. It was such a great way to start the day. The morning sunshine was lovely on my face. I was smiling the biggest from ear to ear....Puffy face ear!

Groundhog Day February 2, 2012

Groundhog Day 2012 will be here soon! Phil will leave his burrow at 7:20 February 2nd at Gobblers Knob in Punxsutawney, Pennsylvania he will observe the weather conditions and look for his shadow he will then make his prediction for the remainder of winter.

Wish me good strength and no throwing up! Next stop....The wig store! I am going to rock a great wig!

I am doing just fine right now. Please....don't be strangers. I promise to blog. I would love vistiors when I am feeling crappy. Movies and ice cream.....come on over. I'll leave the hospital masks at the front door! NO SICK PEOPLE!

Cycle for Survival!

No mattter what..... I will be cycling Saturday!

Come support me! Equinox on Long Island 516-403-4444

90 Northern Boulevard, Roslyn, New York 11548

Wishing Peace & Love,

Michelle-Wigpuffness or wig-a-licious! Wait and see the new look I will Rock!

Puff Girl Flys Home

2012-01-25T21:15:00.000-08:00

Home Sweet Puffiness

Sunday morning I woke with a bit of flying anxiety. I was sort of calm knowing that I had so many steroids in me that my brain was relaxed for the plane home. We landed without any problems or headaches. I was happy to be home, but already missing the beautiful sunshine.

Monday morning bright and early I packed an overnight bag (just in case) and headed into Mskcc for Brain Mri and 4 hour pain management appointment. The horrible joint pain was throbbing throughout my body. Doctors are trying to wein me off steroids and pain medication. I wasn't have been able to bend, kneel or move normally without wincing in pain. The swelling is absolutely ridiculous and uncomfortable. I have been in bed sleeping since I got home.

The goal is to taper the steroids without disturbing the necrosis in the brain, that is swollen! I can't wait to hear this next plan. I can't come off them or taper without an incident. I have had three!

My Mri on Monday showed more swelling. Now what? Surgery?
Tomorrow is another fun filled day of CT scans and meeting a new Oncologist about my liver and the right plan of Chemotherapy or some ting else less toxic. U-toxic would be great.

Today was a good day...until 6 when I feel asleep on the couch sideways and delirious!
I had a breakfast of champs with my KF....I had bagel envy! My ankles were alive and bony! I was super happy to see some swelling n my face calm down (only lasted until about 4pm)...but I found my cheek bone!

Face Swell Puff Story!

Now for the laughter of it all! Ladies can understand this story...it is quite funny. I am self conscious about the chubby face steroid temp look. It bothers me to look in the mirror and I feel a bit of defeated from my body. Get it together face..no more puffy from this medicine crap! Only time with De-puff.
I went into a local store and saw the sales girl that I have known for sometime. She asked me how I was feeling.... I said great with smile. Walking closer to me her words were this..... OH! YOU'RE ON STEROIDS. YOUR FACE IS LIKE MINE WHEN I TAKE THEM!

How do you react to that one? Me? I looked at her and rolled my eyes. Made a point that I wasn't happy with that comment and walked away. Are you kidding me! Talk about making me feel better! My poor friend was speechless! Thank goodness for women like that. She made us laugh.

This story is better than my crying sleepy breakdown at Whole Foods the day before. It took me fifteen minutes to put five grocery bags in the car. My fat little fingers, back pains...etc couldn't understand the process of food shopping. Oh, and the thank you to the impatient lady in the white Camry. Waiting for the perfect spot is great and will not make me move faster. I put the cart back lady! She kept pulling her car closer to me, like I didn't see her. Strange birds out there!

I have another great story to share. But, right now my psychic mind is telling me to go back to sleep. The other psychic wants to go on television! I promise to share this one tomorrow!

CYCLE!!!!!!

Reminder... Cycle For Survival We raised.......... $32,353.00 !!!!!!!!!!!
www.cycleforsurvival.org Franks Cyclers! Go to Franks Team or Frank Marcovitz to check it out!

I have raised a beautiful amount of money that is going towards Rare Head and Neck Cancers and Sarcoma at MSKCC. Our cycle team would love any support, not just dollar bills. Love and care is so important. If you would like to join us we will be cycling at:

Saturday, February 4th at Equinox, Roslyn
Long Island, New York from 1-5 pm

For many of you that need an update about Frank. He is doing and looking fantastic! Carrie said he should be home Tuesday or Wednesday this week! I think you are home Frank! If anyone needs to send a gift or dinners, please email me. I want my friend to be super happy and loved by all. Come to Equinox to see my TEAM Captain!

SPOHNC

Thank you to all my SPOHNC Friends. I appreciate all the emails. Thank you Mary Ann for this nice quote. I am going to share.

Continue to be the strong, brave woman that you are and know that we will continue to keep you and Paul in our thoughts and prayers. To quote one of our famous poets Walt Whitman..."Keep your face toward the sunshine and the shadows will fall behind you!"

Wish balloons

2012-01-22T07:32:00.000-08:00

The sun has been softly warming my face all morning. It doesn't get sweeter than this. Watching the blueness of the water from a balcony in Mexico. I'm at peace.

I've been having horrible joint pain, running through my body. It started last week with my ankle, knees. And now my back and arms are throbbing. I can't sit still, I gave to be moving all the time. I wake up in pain, achey pain. The kind that throbs and won't go away...head to toe. It makes me shake and sob, like I have a fever. I'm walking like a little old lady. Moving around helps a little, just total soreness.
I know it's the medication, poison running through my blood, joints. I need to cleanse and detox this junk out.

Fire Wish Balloon

Paul and I had a fantastic evening to end our lovely trip. Do you know what a Fire Wish Balloon is?
You write down a wish and tie it to this big light weight tissue paper. Its lit and fills with air. Pushed our wish balloon out to sea last night. It was magical and lit up the sky. Flew like an angel across us and around. We watched it float into the night, a huge bright circle then slowly burn out far over the sea to make our wish come true.

Peace and happy wishes to all

Hola Brain Swelling!

2012-01-17T10:36:00.000-08:00

Another brain tale....but a sunnier one!

I suffered through the summer months without a glimmer of sunshine! This overdue vacation was suppose to be a completely relaxing! I begged Paul for this trip. Begged!
Weeks...months of radiation...We deserved this trip. Not a single person can stand in our shoes. It's absolutely ridiculous the pain and torture, emotionally and physically I have dealt with. Paul too! Get me out of New York!

I guess my brain didn't agree!

Paul and I were on the plane Sunday last week getting very close to Cabo San Lucas, Mexico! I got up from my seat and felt the oh so un-normal head rush. Kneeling in the row, I knew something was wrong. When we landed I felt the headache start immediately and it lingered too long into Monday evening. It wasn't a shock to wake up Tuesday at 3am with horrible sharp head pains. I was calm. I threw up the whole time and knew my brain was swelling. Paul called the concierge and we were delivered by Mexican doctors to the ameri-med. The doctor picked us up!
Paul was fantastic, telling them exactly what I needed. Start an IV with steroids, and something to help calm my stomach.
The hospital was so clean and because I was the only patient, very helpful. Amazing care from the staff.

I had my first CAT scan early in the morning. Since they didn't know my history, they told Paul I had a tumor that was bleeding! He was so scared, and had to explain my brain history! It was comical! He told the neurologist here to give me another scan with contrast. I had no tumor!!!! Silly doctors. It's the necrosis from the brain! I just needed a large dose of steroids to calm it. We stayed for ten hours, basically to calm them down. Sent my scans to MSKCC and was told by my doctors the best way to handle it. Then they gave me a pancake and apple juice!
I was told not to fly home right way. Ok! That's a hard one!

I am nervous to fly. Taking the larger dose of steroids and I will hopefully have a good flight home. But, why do I want to leave sunny Mexico!? I am finally having a relaxing time. I'm feeling less tired from the drugs and getting some sun. It's heaven for me right now, it's been a long few months. New York is too cold for a girl like me. Too cold. Waking with a warm breeze is the perfect healing moments I need.

Last night we went on a beautiful sunset cruise and saw lovely whales jumping around the sea. Peaceful and normal. Something our lives are not!

Back to the beach. My little toes need some love in the sand.

Wish me brain luck :)

Love to frank....send him good thoughts! He's doing great! A strong man! I'll post an update for all from him! Xoxo

Grinchness

2011-12-27T15:47:00.000-08:00

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)

Blend it up Baby!

2011-12-21T20:25:00.000-08:00

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.

Tumors are gone! Blown Up!

2011-12-12T21:44:00.000-08:00

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!!!

HOT MESS

2011-12-06T22:23:00.000-08:00

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!

Three more days

2011-12-04T20:59:00.000-08:00

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.

Cycle for Survival 2012

2011-12-03T23:35:00.000-08:00

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

http://mskcc.convio.net/site/TR?pg=team&fr_id=1602&team_id=16652

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

www.peacelovecancer.blogspot.com/

Stick Chair

2011-11-29T03:24:00.000-08:00

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

Tatoo me

2011-11-22T21:34:00.000-08:00

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.

Myelogram & simulation

2011-11-21T09:20:00.000-08:00

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 :)))

Dashing away

2011-11-18T05:16:00.000-08:00

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.

Never liked liver!

2011-11-13T21:59:00.000-08:00

HELP!!!! IT"S HORRIBLE!!!

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.

PET SCAN FUN! MY POOR LITTLE LIVER :(

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!

CYCLE FOR SURVIVAL MSKCC

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!

PLEASE DONATE AND HELP ME REACH MY GOAL! NO GIFT IS TOO SMALL.

www.cycleforsurvival.org

To make a donation go to:

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

CLICK ON MY NAME TO DONATE " MICHELLE PATERNOSTER" thank you so much xoxoxo

It's BACK!

2011-11-09T20:47:00.000-08:00

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..........

Doctor Bully & Exhaustion

2011-10-28T20:50:00.000-07:00

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.

Eat a Banana

2011-10-25T20:07:00.000-07:00

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.

A Letter

2011-10-19T19:02:00.000-07:00

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.

SPOHNC
www.spohnc.org
1-800-377-0928

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
1-800-813-HOPE

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
Michelle

Travel Blog

2011-10-12T12:17:00.000-07:00

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

Vaccine for Sarcoma

2011-10-10T18:22:00.000-07:00

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
NED!

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.

NED

2011-10-06T23:07:00.000-07:00

READY!!!!!!!!!!!!!

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.

Steroid Support Group

2011-09-29T21:20:00.000-07:00

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.

GoodBye Today, See You Tomorrow

2011-09-28T18:50:00.000-07:00

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

Radiation End Picture!

2011-09-18T19:28:00.000-07:00

"You only live once, but if you do it right, once is enough"

Poem

2011-09-17T07:12:00.000-07:00

Thank you Jessica for this poem. We all have our ups and downs and it's nice to read beautiful words and get back to the reality of life. Fartman....my friend....again your energy and thoughts make sense and help me get through things. I apprecaite it.
Wishing everyone a peaceful lovely day. Big Hugs.

The Awakening
Sonny Carroll

There comes a time in your life when you finally get it ... When in
the midst of all your fears and insanity you stop dead in your tracks
and somewhere the voice inside your head cries out "ENOUGH! Enough
fighting and crying or struggling to hold on." And, like a child
quieting down after a blind tantrum, your sobs begin to subside, you
shudder once or twice, you blink back your tears and through a mantle
of wet lashes you begin to look at the world from a new perspective.

..........This is your awakening.

You realize that it is time to stop hoping and waiting for something
or someone to change, or for happiness safety and security to come
galloping over the next horizon. You come to terms with the fact that
there aren't always fairytale endings (or beginnings for that matter)
and that any guarantee of "happily ever after" must begin with you.
Then a sense of serenity is born of acceptance.

So you begin making your way through the "reality of today" rather
than holding out for the "promise of tomorrow." You realize that much
of who you are and the way you navigate through life is, in great
part, a result of all the social conditioning you've received over the
course of a lifetime. And you begin to sift through all the nonsense
you were taught about :

- how you should look and how much you should weigh,

- what you should wear and where you should shop,

- where you should live or what type of car you should drive,

- who you should sleep with and how you should behave,

- who you should marry and why you should stay,

- the importance of bearing children or what you owe your family,

Slowly you begin to open up to new worlds and different points of
view. And you begin re-assessing and re-defining who you are and what
you really believe in. And you begin to discard the doctrines you have
outgrown, or should never have practiced to begin with.

You accept the fact that you are not perfect ,and that not everyone
will love appreciate or approve of who or what you are... and that's
OK... they are entitled to their own views and opinions. And, you come
to terms with the fact that you will never be a size 5 or a "perfect
10".... Or a perfect human being for that matter... and you stop
trying to compete with the image inside your head or agonizing over
how you compare. And, you take a long look at yourself in the mirror
and you make a promise to give yourself the same unconditional love
and support you give so freely to others. Then a sense of confidence
is born of self-approval.

And, you stop maneuvering through life merely as a "consumer" hungry
for your next fix, a new dress, another pair of shoes or looks of
approval and admiration from family, friends or even strangers who
pass by. Then you discover that it is truly in "giving" that we
receive, and that the joy and abundance you seek grows out of the
giving. And you recognize the importance of "creating" and
"contributing" rather than "obtaining" and "accumulating."

And you give thanks for the simple things you've been blessed with,
things that millions of people upon the earth can only dream about - a
full refrigerator, clean running water, a soft warm bed, the freedom
of choice and the opportunity to pursue your own dreams.

And you begin to love and to care for yourself. You stop engaging in
self-destructive behaviors, including participating in dysfunctional
relationships. You begin eating a balanced diet, drinking more water
and exercising. And because you've learned that fatigue drains the
spirit and creates doubt and fear, you give yourself permission to
rest. And just as food is fuel for the body, laughter is fuel for the
spirit and so you make it a point to create time for play.

Then you learn about love and relationships - how to love, how much to
give in love, when to stop giving, and when to walk away. And you
allow only the hands of a lover who truly loves and respects you to
glorify you with his touch. You learn that people don't always say
what they mean or mean what they say, intentionally or
unintentionally, and that not everyone will always come through... and
interestingly enough, it's not always about you. So, you stop lashing
out and pointing fingers or looking to place blame for the things that
were done to you or weren't done for you. And you learn to keep your
Ego in check and to acknowledge and redirect the destructive emotions
it spawns - anger, jealousy and resentment.

You learn how to say "I was wrong" and to forgive people for their own
human frailties. You learn to build bridges instead of walls and about
the healing power of love as it is expressed through a kind word, a
warm smile or a friendly gesture. And, at the same time, you eliminate
any relationships that are hurtful or fail to uplift and edify you.
You stop working so hard at smoothing things over and setting your
needs aside. You learn that feelings of entitlement are perfectly OK
and that it is your right to want or expect certain things. And you
learn the importance of communicating your needs with confidence and
grace. You learn that the only cross to bear is the one you choose to
carry and that eventually martyrs are burned at the stake. Then you
learn to distinguish between guilt, and responsibility and the
importance of setting boundaries and learning to Say NO. You learn
that you don't know all the answers, it's not your job to save the
world and that sometimes you just need to Let Go.

Moreover, you learn to look at people as they really are and not as
you would want them to be, and you are careful not to project your
neediness or insecurities onto a relationship. You learn that you will
not be more beautiful, more intelligent, more lovable or important
because of the man on your arm or the child that bears your name. You
learn that just as people grow and change, so it is with love and
relationships, and that that not everyone can always love you the way
you would want them to. So you stop appraising your worth by the
measure of love you are given. And suddenly you realize that it's
wrong to demand that someone live their life or sacrifice their dreams
just to serve your needs, ease your insecurities, or meet "your"
standards and expectations. You learn that the only love worth giving
and receiving is the love that is given freely without conditions or
limitations. And you learn what it means to love. So you stop trying
to control people, situations and outcomes. You learn that "alone"
does not mean "lonely" and you begin to discover the joy of spending
time "with yourself" and "on yourself." Then you discover the greatest
and most fulfilling love you will ever know - Self Love. And so it
comes to pass that, through understanding, your heart heals; and now
all new things are possible.

Moving along, you begin to avoid Toxic people and conversations. And
you stop wasting time and energy rehashing your situation with family
and friends. You learn that talk doesn't change things and that
unrequited wishes can only serve to keep you trapped in the past. So
you stop lamenting over what could or should have been and you make a
decision to leave the past behind. Then you begin to invest your time
and energy to affect positive change. You take a personal inventory of
all your strengths and weaknesses and the areas you need to improve in
order to move ahead, you set your goals and map out a plan of action
to see things through.

You learn that life isn't always fair and you don't always get what
you think you deserve, and you stop personalizing every loss or
disappointment. You learn to accept that sometimes bad things happen
to good people and that these things are not an act of God... but
merely a random act of fate.

And you stop looking for guarantees, because you've learned that the
only thing you can really count on is the unexpected and that whatever
happens, you'll learn to deal with it. And you learn that the only
thing you must truly fear is the great robber baron of all time - FEAR
itself. So you learn to step right into and through your fears,
because to give into fear is to give away the right to live life on
your terms. You learn that much of life truly is a self-fulfilling
prophesy and you learn to go after what you want and not to squander
your life living under a cloud of indecision or feelings of impending
doom.

Then, YOU LEARN ABOUT MONEY... the personal power and independence it
brings and the options it creates. And you recognize the necessity to
create your own personal wealth. Slowly, you begin to take
responsibility for yourself by yourself and you make yourself a
promise to never betray yourself and to never ever settle for less
than your heart's desire. And a sense of power is born of
self-reliance. And you live with honor and integrity because you know
that these principles are not the outdated ideals of a by-gone era but
the mortar that holds together the foundation upon which you must
build your life. And you make it a point to keep smiling, to keep
trusting and to stay open to every wonderful opportunity and exciting
possibility. Then you hang a wind chime outside your window to remind
yourself what beauty there is in Simplicity.

Finally, with courage in your heart and with God by your side you take
a stand, you FAKE a deep breath and you begin to design the life you
want to live as best as you can.

A word about the Power of Prayer: In some of my darkest, most painful
and frightening hours, I have prayed, not for the answers to my
prayers or for material things, but for my "God" to help me find the
strength, confidence and courage to persevere; to face each day and to
do what I must do.

Remember this:- You are an expression of the almighty. The spirit of
God resides within you and moves through you. Open your heart, speak
to that spirit and it will heal and empower you.

My "God" has never failed me.

Other things?

2011-09-14T20:39:00.000-07:00

Rule

If I stay positive, I will have a better chance.

Let me use my cancer for something good and light a fire under my butt!
It's time for some researching.

Calling all SPOHNC -ERS !!!!!
Suggestions on any sarcoma studies in other countries, states? I have tried the p53 gene study. What else is out there for me to try.
Please, Help would be great.

Astonishing fart man.....where are you? You've been missed.

Wonderful night to all

Xoxo hugs Michelle

Awaken

2011-09-12T20:10:00.000-07:00

I am living with the reality that my body may never be cancer free. I will slowly be tortured and maybe never cured. I may never feel complete and I have so many more things I want to do with my life. Which I will do, just not that fast. I sit wondering about the real meaning of my days ahead. I asked for love, I got it. Praying for peace & strength for all around me. I have been on my hands and knees begging god for a child. A painful time for a young couple to go through. How much can be taken away? I beg for a normal life, freed of cancer shackles that are weighing me down into the mud.

I am having a hard time floating back up into Zombie world...that's your land of blue skies.

I am looking for my awakening.

My Fall Cancer tumor update will begin in less that one month. A countdown to new dangerous lymph nodes that need to be ready to get their butts whooped.....by Me.

I am happy to be a young girl ready to say, " I have Cancer, I am Cranky. And you can't handle it!"

I have had this conversation playing over and over. A Cancer Card Cranky message that I received from a friend months ago. Something I haven't been able to forget. It made me realize the lack of care a person can have. Best thing to ever hear from the person...the truth and how they feel about you having Cancer. HOW can one be jealous of Cancer? What happened to comapassion?

I will leave it alone and move forward knowing that some things can not be mended. Ugly words run deep into my soul.

I don't want someone like you in my life....so I choose to be free.

Oops

2011-09-08T18:44:00.001-07:00

Paul just told me that I was wrong!

It was Chair, green & honesty!

My Brain isn't working that great....thank god his is!

Big Brain

2011-09-08T18:06:00.000-07:00

I am home from the hospital...No Headaches!

I knew something was terribly wrong on Saturday. I just waited because I wasn't sure if my pain was going to subside. It didn't.
I had the worst head pains. I mean...I couldn't even talk it was that bad. I thought I was going to die, really that's how horrible it was. Monday night I woke up at midnight....crawled to the living room...holding my head and then I threw up. The last time I felt that way was after my Brain surgery. I knew something was wrong and I needed to see a Doctor.

Paul drove me into Urgent Care at Mskcc. I did testing and an MRI. Neurologist tested my Brain functions. Remember these three words.... Couch, green & honesty. Piece of cake! I passed my test, now give me drugs....please.

The scan showed severe swelling in the area that I had radiated years ago. This was my diagnosis.... worsening leftward subfalcine shift from 10-14 mm. Meaning....my brain moved! Really it moved which has been causing the headaches, eye problems...dizziness. My recent treatment didn't help. The nerves go right into this area and the radiation tricked in. My brain got bigger....my fantastic smart brain does not fit in my pretty scull.
I have necrosis in this area, which hasn't changed. That's a very good thing. I got an IV and they pumped me with a bag of steroids.
I have swelling from Radiation. Even though my brain wasn't getting radiated, it can get some leftover that can cause problems. I was able to see my eye doctor today at the hospital. They were nervous about spinal/brain fluid in my eye. I was fine...but have cataracts.

I will be on steroids and belly medicine for a while. I see my Neurologist and Brain Doctor (love him) soon and will get on a plan of attack. I still have to deal with the lymph node bumps that I found in my neck. Cross your fingers that it's nothing. My track record.....It's most likely something. Good thoughts! No more surgery....I am taking it as it comes.

Good news! The scan showed that my nerve that I just did 6 weeks of treatment on looks great. The tumor cancer cells may be gone! The radiation worked! I still have to wait for another scan in a few weeks...but, that was promising.

I am back in bed. Being careful about my head. I can't even tell you how scary this is. My Brain is swollen and could be a problem. I am just so happy that I don't have a headache.

Brain love to all and to all a good night

2011-08-23T11:50:00.001-07:00

"If it is peace you want, seek to change yourself, not other people. It is easier to protect your feet with slippers than to carpet the whole of the earth." Anthony de Mello

Radiation Hell is Over!

2011-08-20T14:09:00.000-07:00

Healing!

I was very anxious to finish my last day of Radiation Treatment. It's been a long exhausting week, a long six weeks. I am so happy that it's over.

My mouth hasn't gotten any better. I pick at food, but barely eat. Soup is my favorite new friend. I lost a lot of weight and Paul keeps telling me that I am too skinny. I know once the side effects subside I will be eating again. I am going to try a milkshake later. The last time I did, I got super sick from the milk. I don't eat dairy and it was rough on my body.

I haven't been driving and usually spend most of my day in bed. The facial nerve pain and headaches are constant and if my stomach is empty it's hard to keep medicine down. I am so sick of being doped up on pain killers. I am so sick over being hungry all the time.

Blogging is making me dizzy. I am going to call it a day.

Thank you everyone.

I will blog more soon.

5 treatments left :))

2011-08-12T15:21:00.000-07:00

Five weeks into treatment and all I can say is, " ouchie"

I knew the side effects would catch up to me. My ear is killing me! It's dry from radiation and painful which has triggered the beautiful feeling of dizziness, headaches and vertigo. I have been waking up hoping my ear is still attached. So much fun!

SPOHNC ~ A great meeting last night. Paul and I went together. We both love that everyone in the room, understands. You don't have to go into such detail when your talking about treatment....they know what it's like. Paul has been by my side from the day we met, the beginning of this awful, sometimes hilarious journey. He can speak openly and is supported by everyone as well.
If you are on Facebook. Please go to the SPOHNC group page and hit LIKE. Thanks.

There are support groups for Oral, Head and Neck cancers all over the place.
Go to www.SPOHNC.org to find one near you.

Resting my dizzy head.

Peace and balance

25 down
5 left

Fifth week

2011-08-08T21:43:00.000-07:00

Moving along....faster than I thought.

I never made it out to Montauk. I was so uncomfortable all weekend. My poor mouth is bothering me so much. I have horrible sores and my taste buds are like huge bumps. I can't taste a thing and if I do...it's like soap!
I'm on my fifth week and have nine treatments to go! I am almost done!

I was talking with my neighbors oldest son about manifesting good energy and thoughts. His mom said that with all the crap that I have been through, she can't believe how amazing positive I am. I have to admit, I know am. I rarely get upset or talk cancer sadness to people around me. I have a few friends that I break down with and talk openly about it. I don't hold it in. I am fighting this! I've been dealt a tough hand...but hey most of us have.
I believe that is why I had such a hard time when a friend didn't quite understand my crankiness. What...?? Cranky because I have a hard time living with cancer? Yeah, you wouldn't understand that one.
When I am having a tough day I let everyone around me know. I see how people take things personally. It's absolutely ridiculous. I let them know ahead of time how my day is panning out. It gives them a chance to either run and hide or stick by my side and help me through the moment.

What I have learned during radiation treatment...

Patience
Italian ices make me hyper
Cranky is okay
I'm stronger than I think

SPOHNC meeting this Thursday evening! I am looking forward to my support group. A month is way too long! They will be so proud my strength and progress.

My dream ~ my Aunt Mary Ann passed away this time four years ago of breast cancer. She is my god mother, my angel. Last night I dreamt of her beautiful face. She looked like I remember her. A long braid and cute Irish freckles on her face. I reached out to her crying and asked her over and over, why did you leave me? She never spoke. I felt her arms wrap around me. My Aunt was so petite and tiny that I would have to bend down to hug her. I did this in my dream. I was sobbing and I could feel the nook of her neck and shoulder. It felt so real and comforting. I truly believe that she is with me.

Peace & meditating hugs

Day # 18 finished!

2011-08-03T21:21:00.000-07:00

I am totally feeling the affects of the radiation. I'm happy to say it's not as bad as I thought it was going to be. I say that as I knock on wood...I still have weeks left.
Soup and Italian ices are now my new BFF. My mouth is super dry all day long, like a lizard in Vegas. Sharp pains have been catching me off guard. I gave in today and took a pain pill. Nothing was working and It calmed me down a bit.

When I'm in horrible pain, I cry. My body just shuts down and I feel defeated. I really fall to the floor heaving with tears, mumbling how much this sucks.
My mind has been able to rid itself of garbage. I take negative thoughts and write them down. This may include a person who angers or stresses me, a comment, moths eating my good sweater...and I burn it. I let the fire destroy the papers....because I don't need that bad energy.
The good things...I love this! I write down three things in my life that I love or would want more from. Don't ask for wealth. My mom to recover nicely from surgery, Paul to stop snoring and good energy for the weeks to come. Then I dig a hole and bury it for it will blossom into something beautiful.

About me:
My throat is killing me. I found an enlarged lymph node ( pray no tumor) and will be watching it.I'm run down which can cause my lymphs to work...swell. Normal. Mouth sores are fun! Ear is feeling so weird, foggy. I feel a difference in skin temperature on that side of treatment. It's warmer and dry. Again, all normal.

Super tired.
Goodnight blog buddies.

Hitting the beaches this weekend in Montauk!

What a day!

2011-07-25T20:37:00.000-07:00

A ton of thanks to Ashley, Elizabeth & The Astonishing Fartman for your generous donation to SPOHNC.

This support group has helped me in so many ways. Being apart of this group and meeting these amazing people has completely changed my life. Donations make it possible for caregivers, patients and family to be involved with treatments and research. Getting updates and knowing I am not alone is a great feeling.

Update on little me...

I have been totally bummed out. Trying to snap out of it. Why am I still shocked that I have cancer?? Getting back on my feet and heading into another week of treatment. I am having some swelling in my cheek and neck today and a horrible sore in my throat. Paul made me a lovely cup of warm honey tea. Honey is amazing!

I am doing everything I can to keep my immune system strong! And.... to fight off the issues of radiation.

To my wonderful brother....You are amazing and truly an inspiration. Your strength and determination has always given me so much will to fight and live a long life. I love you for all of your accomplishments! Congratulations! It was an amazing night! Thank you for letting me be apart of your journey.

What to say/do when a friend is sick

2011-07-22T21:15:00.000-07:00

NYT article about what to say/do when a friend is sick

‘You Look Great’ and Other Lies

By BRUCE FEILER

Published: June 10, 2011

REPRINTS

MY friend sat down and ordered a stiff drink. I didn’t think of her as the stiff-drink kind. An hour later, after our spouses drifted off into conversation, she leaned over the table. “I need your help,” she said. “My sister has a brain tumor. I don’t know what to do.”

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Health Guide: Cancer

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Three years ago this month, I learned that I had a seven-inch osteosarcomain my left femur. Put more directly: I had bone cancer. That diagnosis led me down a dark year that included nine months of chemotherapy and a 15-hour surgery to reconstruct my left leg.

At the time, my wife, Linda, and I were the parents of 3-year-old identical twin girls, and we were often overwhelmed with the everyday challenges of having a sick dad, a working mom and two preschoolers. We survived with help from many people. Our siblings organized an online casserole club, so friends could buy us dinner through a meal service. Grandparents rotated in and out of our basement. My high school classmates made a video at our reunion.

But as my friend’s query suggested, some gestures were more helpful than others, and a few were downright annoying. So at the risk of offending some well-meaning people, here are Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick. And Four Things You Can Always Say.

First, the Nevers.

1. WHAT CAN I DO TO HELP? Most patients I know grow to hate this ubiquitous, if heartfelt question because it puts the burden back on them. As Doug Ulman, the chief executive of Livestrong and a three-time cancer survivor, explained: “The patient is never going to tell you. They don’t want to feel vulnerable.” Instead, just do something for the patient. And the more mundane the better, because those are the tasks that add up. Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.

2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché. It’s time to retire this hackneyed expression to the final resting place of platitudes, alongside “I’m stepping down to spend more time with my family,” or “It’s not you, it’s me.”

3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED? I was stunned by the number of friends and strangers alike who inundated me with tips for miracle tonics, Chinese herbs or Swedish visualization exercises. At times, my in-box was like a Grand Ole Opry lineup of 1940s Appalachian black-magic potions. “If you put tumeric under your fingernails, and pepper on your neck, and take a grapefruit shower, you’ll feel better. It cured my Uncle Louie.”

Even worse, the recommenders follow up! Jennifer Goodman Linn, a former marketing executive who’s survived seven recurrences of a sarcoma and is compiling a book, “I Know You Mean Well, but ...,” was approached recently at a store.

“You don’t know me, but you’re friends with my wife,” the man said, before asking Ms. Linn why she wasn’t wearing the kabbalah bracelet they bought her in Israel.

4. EVERYTHING WILL BE O.K. Unsure what to say, many well-wishers fall back on chirpy feel-goodisms. But these banalities are more often designed to allay the fears of the caregiver than those of the patient. As one friend who recently had brain surgerycomplained: “I got a lot of ‘chin ups,’ ‘you’re going to get better.’ I kept thinking: You haven’t seen the scans. That’s not what the doctor is saying.” The simple truth is, unless you’re a medical professional, resist playing Nostradamus.

5. HOW ARE WE TODAY? Every adult patient I know complains about being infantilized. The writer Letty Cottin Pogrebin, who had breast cancer, is working on a book, “How to Be a Friend to a Friend Who’s Sick.” It includes a list of “no-no’s” that treat ailing grown-ups like children. When the adult patient has living parents, as I did, many mothers in particular fall back on old patterns, from overstepping their boundaries to making bologna sandwiches when the patient hasn’t eaten them since childhood. “Just because someone is dealing with a physical illness,” Mr. Ulman said, “doesn’t diminish their mental capacity.”

6. YOU LOOK GREAT. Nice try, but patients can see right through this chestnut. We know we’re gaunt, our hair is falling out in clumps, our colostomy bag needs emptying. The only thing this hollow expression conveys is that you’re focusing on how we appear. “When people comment on my appearance,” Ms. Linn said, “it reminds me that I don’t look good.”

Next time you want to compliment a patient’s appearance, keep this in mind: Vanity is the only part of the human anatomy that is immune to cancer.

So what do patients like to hear? Here are four suggestions.

1. DON’T WRITE ME BACK. All patients get overwhelmed with the burden of keeping everyone informed, coddled and feeling appreciated. Social networking, while offering some relief, often increases the expectation of round-the-clock updates.

To get around this problem, I appointed a “minister of information,” whose job it was to disseminate news, deflect queries and generally be polite when I didn’t have the energy or inclination to be. But you can do your part, too: If you do drop off a fruitcake or take the dog for a walk, insist the patient not write you a thank-you note. Chicken soup is not a wedding gift; it shouldn’t come with added stress.

2. I SHOULD BE GOING NOW. You’ll never go wrong by uttering these five words while visiting someone who’s sick. As Ms. Pogrebin observes of such visits, don’t overstay your welcome. She recommends 20 minutes, even less if the patient is tired or in pain. And while you’re there, wash a few dishes or tidy up the room. And take out the trash when you leave.

3. WOULD YOU LIKE SOME GOSSIP? One surefire tip: a slight change of topic goes a long way. Patients are often sick of talking about their illness. We have to do that with our doctors, nurses and insurance henchmen. By all means, follow the lead of the individual, but sometimes ignoring the elephant in the room is just the right medicine. Even someone recovering from surgery has an opinion about the starlet’s affair, the underdog in the playoffs or the big election around the corner.

4. I LOVE YOU. When all else fails, simple, direct emotion is the most powerful gift you can give a loved one going through pain. It doesn’t need to be ornamented. It just needs to be real. “I’m sorry you have to go through this.” “I hate to see you suffer.” “You mean a lot to me.” The fact that so few of us do this makes it even more meaningful.

Not long ago, I reached out to my friend’s sister, Amy, who had endured three surgeries in the previous six months for a tumor in the thalamus. She was undergoing physical therapyand had just returned to work. What most annoyed her, I wondered?

“I liked having the family around,” she said, referring to her six siblings and their five spouses. “But I had a lot of issues with my room seeming like a party and my not being in a place where I could be down if I wanted.”

The most helpful tip she got? “People reminded me that I had a free ‘No’ clause whenever I needed it. Especially as someone who tends to please, that was helpful.”

So in the end, what would she say to someone like her sister who leaned over and asked for advice?

“Fully embrace the vulnerability of the situation,” she said. “I would never have gotten through it if I hadn’t allowed people in.”

That even included a new boyfriend, who became so intimately involved in her recovery that she allowed him access to her innermost self. The two became engaged in the I.C.U. and plan to marry next year.

4 more weeks!

2011-07-22T20:45:00.000-07:00

I am so happy that today is Friday! I get two days off from the hospital and

20 more treatments to go! I wouldn't say time is flying by...but I am moving forward. I love the staff at MSKCC in Commack. They have been so wonderful and have made this experience a little easier. I don't think I cried this week. I am doing better than I thought!

I have been keeping myself super busy, which has made me so tired. Birthday partys for friends and myself ( I had 3 of them), babysitting, spending time with my family. It's nice to continue treatment and still be able to enjoy my life. It's so important for me to have a full day, even if I have to nap every so often. I haven't been spending too much time in the sun. I would love to just spend everyday at the beach with a good book. Wow it's been hot out. I do love the heat! I know that I just have to get through the next few weeks and then I can go away and enjoy.

A friend told me today to think of my treatment like my full time job. Instead of getting frustrated with the daily routine, I need to think of it as something else. I have been driving to treatment alone. I enjoy the time to myself with my thoughts. I have been more relaxed in the room when I get there. I am not being stubborn, I will let other people take me. I just hate being late and like to drive. That's just my thing. I know as it get's harder I won't be doing to much.....then everyone can take over.

The pain has been bearable. Holding on as long as I can without take pain pills all day. I have even skipped the sleeping pills. I need to keep my immune system strong to get through the next few weeks. Today I felt my body run down....not really sure though. It is hard to figure out what's going on. My hair started to fall out on one side. I try not to blowdry or brush it too much. I have noticed that my mouth is so super dry, especially at night. I wake up so often to drink and put drops in my eyes. I hate waking up during the night.
All I think about is my friend Billy. I am in tears thinking about him. His voice, I can hear it now so clear when he use to speak to me. He was always drinking something to help with his dry mouth. Things got so horrible for him. I know he went through something different, but I just remember how hard it was. I don't want to be in pain like that...I am so scared that I will.

I don't like air conditioning and overhead fans. I start with the door open to get some cool air from the living room. Fan is on for a while, and I sleep with an eye mask because I can't stand the air hitting my dry eyes.
Within an hour the door is shut, fan is off and I am dripping wet from the heat. Strange, but I love it.
I should rethink the air conditioning, it's hot. I am missing my home more and more and can't wait for it to be done (it's being fixed :). I have been so uncomfortable and It's causing daily frustration. The little things. I would love room service right now, something that was fantastic in Boston.

We had our 8 year Wedding Anniversary this week. It's amazing that we have been through so much. How strong we have both been for one another. I have survived for my husband, I promised him I would. I would of walked away from all this pain years ago. He is my strength, because I couldn't imagine tears falling from his eyes for me. I can't bare to think of him heartbroken with loss. My gift to Paul is Six weeks of torture treatments, so I can keep him happy and smiling. Because all he wants is a healthy wife, and all I want is this cancer to be over and gone.
It's so difficult to want to fight for a life that seems to always want to kick you down. Go away Cancer cells!

Believe is wishes. Dream in color. Positive thoughts. Appreciate the living. Give back, do something nice this weekend for someone else.

Special News of the week:

Happy Birthday Kristen
Happy Birthday Sean and Baby Gigs Ryan!
Congratulations to Brian (aka Bman) and to Robert (aka Robbles, 2times, doorman)
Big Congrats to Nance for getting her framing grant! Good Job sister!
Boston Greg got married!

HAPPY BIRTHDAY TO ME!

2011-07-13T04:01:00.000-07:00

I have only one wish when I blow out my candles. Every year it's the same wish.....one day it will come true. I will keep wishing.

Today.....
They put me in early for treatment today so I could have the whole day to celebrate and do anything I want!
My day will consist of SPF 100, Zinc, something to help the pain, A Nap....and me smiling all day. I have been getting pain in my face ( Doc said this would get worse through treatment and then subside). It's very uncomfortable and only pain killers help. Paul is my chauffer!

We'll I now have two balloons. Congratulations and Happy Birthday!

A beaufitul day! I am going out to enjoy it!

Pinch Pinch from your Cancer (strange...zodiac sign) Crab.
I am going to the beach where I belong!

Congratulations!

2011-07-09T21:04:00.000-07:00

I got my CONGRATULATIONS balloon!
Paul surprised me with it after treatment. I love it. It says, " hooray, wow! And you did it!" He hid it in the back and I had no idea. I was so happy that he remembered. I have an awesome husband. He has been taking care of me from the beginning without one complaint. I appreciate every little thing that he does for me..... I love my balloon.

I had a lovely surprise party with candles, ice cream cake and pretty sun flowers. My niece planned it and did a wonderful job. She is adorable. Olive was super cute whispering to everyone before she led me into my party. Poppi, who is 93 followed us through the basement, reassuring me that he's fine on the stairs. Olive had the biggest smile on her face. I turned to Poppi and said....I think we are going to get cake!

And....yummy cake we had! Have a wonderful weekend.

Peace and hugs

Every life has a measure of sorrow.
Sometimes it is this that awakens us.
-Jack Kornfield

SPOHNC

2011-07-08T06:05:00.000-07:00

SUPPORTING PEOPLE WITH ORAL HEAD AND NECK CANCER

www.spohnc.org

I had the most amazing night. I woke up this morning with a new fighting attitude. I went to a support group for people with head and neck cancers. I have never felt so accepted and understood in my life. The love I received when I walked in the room was overwhelming.
I rarely have anyone ask me about what I have been through and understand. It's just known I have cancer and that's it. But, it's so much deeper and painful than just saying "Cancer Patient".
When I told my story and got into the details of all my surgeries, Chemotherapy & Radiation....I saw heads shake with agreement. They know what I have been through and couldn't believe what I have endured.

After the meeting everyone came over to me to wish me luck through treatment. The feeling of finding them made me cry and I did all the way home. I have a huge group of people to talk too and they totally get it!
I have been so scared and petrified to go through this again. All I have wanted to do is talk to Elsa. On the way to the meeting I cried thinking about her and how I would be on the phone with her. Elsa, I miss you so very much. I am so happy that I met new people that understand.

Radiation Day :( Wish me luck. After last night I am feeling like a dozen new loving people are helping me fight in my corner!

I am still counting down to my Birthday! Here is what I would like for a gift. Go to the SPOHNC website and make a donation.

Enjoy your day

Happy Almost

2011-07-02T21:56:00.000-07:00

I am usually more excited when July comes around. I am sad that I have to have radiation in the summer and of all months.... July! This truly can ruin a persons birthday spirit.

This year I am not going to let it take the fun out of my "Celebration" time. It's my Birthday and I am proud to be alive and kicking. Yippee! My Birthday! Balloons and cake!!

Happy Happy Happy Birthday to me! I made it another year.

That's what I think everyone needs to understand about how I really feel about my Birthday. It was always just a day to celebrate and have a good time (song lyrics). Now it means more to me than just a day. I just spent another whole year living, suffering & smiling to get to another birthday! I am alive and I get to celebrate my life on this day. My life, something people take for granted. To me, it's a triumph....Victory! I deserve a round of applause. This is a life long battle for me and I am super happy to be a year older. I am alive to celebrate it and that's amazing in my eyes. Another year of torture for cake....I'll take it!

I have so much in me right now that I want to spill all over my blog. My thoughts in the past few days have been so fogged with different emotions. I am feeling wonderful about my actions and decisions the past few weeks. Moving forward in treatment with hope that it will work. I gathered my team of lovely support angels. Everyone knows the deal on how to keep me smiling.
BTW.....Mich...Paige got me hooked on pretzel MM's! I may need a bag when I come over.

I walk the doggies everyday on the beach and find a ton of beach glass (Heineken bottles!). I have a little crystal bowl of my green clear and one brown treasures. I am amazed that I actually find so much. I also have beach duty cleanup in the works. Tons of plastic wash up on the rocks. It is so disgusting. Please stop throwing things out the window and off boats. I wish people had a little more sense. Totally gross to see it surrounded by beautiful shells and little crabs working their way back to the water. I will be picking up other peoples garbage because I care about the water!

Thursday was a bad health day for me :( I have been on steroids for days to help with my facial pain. Pain is still there..... along with beautiful steroidal acne that looks so darn pretty. I'm glad that I am super tan, it's not that noticeable. Of course, I took myself off of the meds due to the fact that I am still in pain. Living on clearasil and wondering how do teenagers deal!! My heart bleeds for you kids! Back to Thursday...the day of aches, dizziness, pains....puking.... check all on the doctors checklist! What a fun day! I pushed through and loved the feel of the cold bathroom floor! Why is that so comforting when you're sick??

I leave you now my little chickens..... careful of fireworks, appreciate all you have & love your friends.

2011-06-22T20:00:00.000-07:00

I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall togther ~ Marilyn Monroe

The Mask

2011-06-17T21:14:00.000-07:00

For those who get my blogs emailed to them....you have to go onto the real blog and see these pictures. www.peacelovecancer.blogspot.com

This is the process of Radiation treatment. This is really the worse part and I look like Hannibal! I did pretty good considering I new exactly what was going to happen. It was torture having the mask done. I had my IV in and laid on an uncomfortable rectangular head rest waiting for the mask to be fitted. They did some scanning and moving to position me for the mapping. They put this waffle looking flat board in hot water to soften. Then they put it over your face with just a nose hole. It's soft like pizza dough. They lock it down across your head and lightly mold it to your face. Over a few minutes, it hardens and tightens around your eyes, mouth and face. This is the time I started to cry. The smells just bring back so many horrible memories.
I now I have a long 6 weeks ahead of me. The burn, blistering, mouth sores...ear issues.
I see how and why people around me don't understand. Which I am glad they don't...it means they are healthy and hopefully will never understand. I don't want anyone to have to endure this. The first time I was doing Radiation, Paul drove me to the city everyday. It was such a low dose that I barely had any side effects. I also had very few friends supporting me. In Boston I was really alone. A handful of family and Jessica came to visit me. Paul was with me the whole time...but it was hard. You get to the point in this horrible journey that you don't want to ask for help. You just want it done. So, I sat alone a lot in Boston. Paul did his best and I love him for that. He is now going to be get me a CONGRATULATIONS balloon every Friday for my job well done!
The worst came at the end of the treatment. I couldn't shower, smile, sleep or eat without the burn hurting me to the core. It was so painful and uncomfortable. I didn't wash my face or hair for days, water was my enemy. This is what I am afraid of the most. The last two weeks...the recovery.
I now embark on another radiation nightmare journey. This time at home. Not hiding and not alone. I am
scared of the disappointment I will come across from friends and family. I do understand that everyone acts and deals with situations differently. With that in mind, I won't take anything personal.

I joined a new support group! Head and Neck Cancer! Yeah!
www.spohnc.org

I have my Mri on tuesday and I will get a phone call soon about my start date. Stay tuned, I will be bloggin this event!

Hugs Michelle

Advice

2011-06-07T21:50:00.000-07:00

I never thought that I would be fighting for my life at 32. I give everyone advice that I should be taking. Sweep out the negative in your life. Don't sweat the small stuff. Live without fear.

My mother in law brought up something funny. When we get to a certain age, we say whatever is on our mind, hurtful, honest...whatever. Nobody takes offense, because we're old. That's what old people do.
But, why are we not living that kind of way.....always. Honesty!

I will say it again....my favorite quote. Because it holds so true in my life right now.

Do what you want and say how you feel,
Because those who matter, don't mind,
And those who mind, don't matter

When you're going through tough times, you see matters and who truly cares. You don't forget and sometimes you don't forgive. For me...now in my life. I forgive, because my life is way
too short, too hard and at times it's just too much energy. Negative energy.

Lesson of the day: Start taking your own advice.

I don't know exactly what state I will be in. I will be starting treatment very soon. I'm sick thinking about it, so I will keep you posted. I'm starting to feel pain in my face :( I am avoiding that phone call to the doctor. I can't live on pain medicine. I am also looking into a holistic approach to treating this nerve/tumor thing.
My choice...leave me alone! I'm a fighter, but boy am I tired. I would do nothing and enjoy my summer.

Solitude and bliss.....coming from me this summer.

Shame on me

2011-05-23T20:39:00.000-07:00

I am still fighting this never ending battle with cancer.

I went into Mskcc with my dad to get the results from my last Mri. My brain looks great. There is one area in my face/neck that the doctors are concerned about. An enlarged nerve with tumor.

When I heard Dr B. suggest radiation I panicked. I could not imagine going through another treatment. The first time was awful. The second was painful,awful and depressing. One more time?
It reminds me of that saying...first time shame on you, the second time shame on me...the third time is just ridiculous. I made the last part up.

Why not take the chance....and just live.

I have the memories of my beautiful friends that keep me fighting. I find it amazing that they are gone from earth...but they are the ones that know me the best and gave me the most support. They lived the most, fought the hardest and took nothing for granted. Even now, they keep me going. I live for them.

Tomorrow I will see my radiologist here on long island. Where oh where will I end up? Boston? Long island? Hawaii with a frozen cocktail in my hand enjoying my life without pain and fear?? Guess which one I would pick?

This thought crossed my mind as I drove home today. How badly I wanted to drive....just drive on until I ran out of gas. Then I looked at my almost empty tank! I went home and watched a movie with my doggies. The next best thing.

I need a destination to escape too. Any suggestions??

Spring has arrived

2011-04-30T17:30:00.000-07:00

Another scan on Thursday and I am waiting for a good results.

I went to home depot today to get wood shelves for my closet. Driving home I had barely any feelings in my arms. Not pins and needles, no feelings. I did carry them through the store and blew off getting a cart. Yes, they were heavy and awkward to carry. I am pretty sure this is why my arms were disappearing. I also imagined a super tumor in my scull cutting off blood to my arms! This is what a cancer patient thinks about!

Tick Tock. Just waiting for news.
Wouldn't it be amazing if I had a clean scan and no surgery for a while. Actaully, that might be strange.

Happy May! Tulips make me smile.

Keep thinking about Elsa and her beautiful life with us.

2011-04-17T18:47:00.000-07:00

Wow! My life has been completely nuts! I am going to bed every night with a checklist in my head. When I open my eyes it's floating above me laughing. I just can't get it all done. A little at a time. I am sure I will always have a checklist.

Things have been good. We started renovations on our house last week. It's so exciting and frustrating at the same time. I can't complain because I am finally getting a beautiful bathroom! It's been fun picking out tile and toilets! Packing and unpacking!

I had a scan last week that I put off due to a horrible stomach ache. I couldn't even get out of bed. There was no way I was driving or getting on a train. I also have no interest in hearing bad news. I just want to go a six months with a clean scan. I will even take 8 months! It's been nice not to think about sickness after the stupid pills. I do know that I need to get a plan in order. I see Dr Doom next Friday. Hopefully he will have something for me. I am not getting my hopes up. I know how the conversation will start and end.

Tomorrow I am suppose to be in the city for an MRI. I am not sure if that is going to happen. A little screw up with my appointment.

It's still really hard to think about Elsa. Miss you a ton. I don't understand death.

It's also hard to hear about people around me complain about silly problems. If they only knew what a problem really was. I know everyone has their own daily stuff that they go through. Everyone complains. That is why I have been keeping my conversations light and happy. I just want Paul and I to get a break....I need a lucky streak to start! Please!

Because, honeslty I am happy.

Elsa

2011-03-31T21:01:00.000-07:00

I'm lying in bed thinking about my friend Elsa and the memories I have of her.
I can't stop thinking about her. She is an inspiration to so many of us fighting cancer.she was so brave and focused on getting healthy.

I cry for her and wish I could of helped her. I find life to be so unfair.

I love and miss her. I will miss our talks about getting on opera and discussing Sarcoma cancer! We both felt that not enough money went to our rare disease. Are we not good enough to do research on? Elsa and I had a whole plan....and a book waiting to be written.

Elsa if you can hear me in heaven....I will figure this out. One problem....opera is going off the air! But, I can write the book!!

I'll see you again Elsa.

All my love and in my heart forever.
You will never be forgotten.

Fog

2011-03-01T18:38:00.000-08:00

I'm trying to snap out of this funk that I am in. I'm floating through the days in a fog. I have so many things going on. My mind can't quiet itself at night and my sleeping is awful. I know the medicine is doing it to me. I haven't been feeling that great. I wake up every morning with a headache. I have a bumpy mess on my shoulders and chest....I'm kind of gross right

Today was wonderful. I spent the day with a friend who is pregnant. Today was her due date and I went to the doctor with her for her check up and sonogram.

It made me want so many things that I can't have. I realized that I need to make those things happen in my life.

Paul and I are moving forward with another exciting chapter.

2011-03-01T17:52:00.000-08:00

“It's really hard to walk in a single woman's shoes -- that's why you sometimes need really special shoes!”

Good Days

2011-02-19T19:44:00.000-08:00

Just letting everyone know that I am feeling good. I wasn't sure how I was going to feel after taking the pills. The drug fact sheet has a ton of interesting side effects.

I am on my second day of the 2mg Sirolimus pill. My stomach is bothering me, but I believe it's from a mix of anxiety and nerves. It really is a small dose.

I have so many things I could blog about right now. I just feel that I need a few days to get my thoughts together.

I hope everyone is having a great weekend.

Michelle

Sirolimus

2011-02-15T21:35:00.000-08:00

I'm up, it's late. I'm in bed watching my dogs sleep peacefully. I am also looking at my new prescription for sirolimus. I feel sick just thinking about it.
The day started out great. I just couldn't move this morning. I threw on some workout clothes and just sat in my kitchen.

I bottled up my anger and sadness all day. I thought I'd feel better after the doctor.

I can't stop crying.

I am exhausted.

Sarcoma Drugs

2011-02-14T19:29:00.000-08:00

Happy Valentines Day 2011

It was a beautiful day today. The weather was just perfect. I would of liked it about 30 degrees warmer...but I will take 53. Paul and I had a great evening. A random call to one of our favorite restaurants at 4pm landed us a table a 5pm. We then came home to a buffet of chocolate covered buffet that I set up in the living room! Watched a movie and we are heading to bed early. A perfect evening! I am married to the most loving man. When he tells me that I am beautiful...I know he means it.

This is a little note, question to my bloggers. Has anyone heard of RIDAFOROLIMUS ????

I did a little research about it. I would love to get feedback from anyone. I am going to talk to my oncologist tomorrow about it. I am hoping to start something soon. I can't wait for another tumor, sarcoma attack. I have been through so much. My poor body and mind, I totally exausted. I am actually excited to see the Dr's tomorrow. Strange even for me.

On top of that...I have confusion in my support circle. It kills me to push people away. I just don't have the energy to make others feel good about decisions they have made. Or chase them looking for love. It's getting ridiculous! You are either by my side or you're not. It's that simple. Honesty is easy and respected.

My mother gave me great advice today that I am going to follow through on.

Have a wonderful week.

Love Love Love

Home

2011-01-22T18:50:00.000-08:00

I'm home from the hospital.
Surgery went really good. They removed the tumor in my cheek and neck. Doc also took out a few other lumps and fifteen lymph nodes in my neck.
I have a ton of stitches in my mouth. I'm on my second day of mashed potatoes. I'm so swollen and bruised I can't chew anything.

I am heading back to bed. I'll blog more when I'm feeling better.

Moving forward.

Xoxo Thanks for checking up on me.

Squirrel Cheeks

2011-01-17T19:44:00.000-08:00

Swimming in Mexcian waters yesterday :)
Pre-op tomorrow :)
Surgery Friday :(

I did have a great relaxing trip away with Paul. I am getting mentally prepared for another surgery. I think this one is going to hurt a bit. I have a tumor growing in the muscle of my cheek. I am like a squirrel hiding acorns in my cheeks. That is what I feel like! It's been bothering me and I can't wait to get it out.

Hugs & Love
Michelle

Happy Holidays 2010

2010-12-27T18:46:00.000-08:00

I am a little late on the Holiday blog wishing.
I am really happy that it's over and I now have 3 months to be tortured by the cold. We got hit with a nice winter blizzard yesterday. I don't mind the snow. It's my excuse to do absolutely nothing. I am getting very organized around the house. The perfect time to clean out closets and drawers.
I had a great Christmas and spent the day making it disappear. I was able to get all the ornaments away. I want my house back to normal.

I am still dealing with the same old issues that I have been for years now. I have my surgical date set for January 21st. It would have been sooner, but Paul and I had to make some difficult decisions before I went forward. I changed the date three times!

I am getting tired of these horrible tumors!

It's almost a New Year. I am looking forward to the great things that will be happening. Hoping and praying that something health wise will change.

Winter Hugs
Michelle

Fortune

2010-12-13T05:45:00.000-08:00

"Happy news is on it's way to you" ~Fortune cookie 2010

As luck has it, I do have to endure another surgery at some point in the next few weeks. But, things have been balancing out quite nicely in my life. I have the emotions and sadness of another fight ahead, and my dreams of becoming a mother have been visible every single day. I finally wake up with a huge smile on my face knowing every moment we are one step closer.

Paul and I are ecstatic moving into 2011. Our Happy news is coming!

I am still doing my energy work & meditation. It really helps in so many ways.

I have an adorable Christmas Picture this year of Bandit in her Santa hat. She struggled for a while to get it off...poor dog! I'll post it.

Peace

No Turkey for me this year!

2010-11-28T09:03:00.000-08:00

Happy " A little late" Thanskgiving to All

I hope everyone had a peaceful day and filled themselves to the brim with a delicious meal. I didn't even have one piece of Turkey! I asked my Dad to Pardon his this year...poor thing.

Paul and I have so much to be thankful for this year. Everyday has been a gift.

Now we start the Holiday shopping!
I am going to make a list this year and give myself a budget. I try this every year and I fail to follow my own directions. We are really just buying for the kid, it is not that hard.
I just end up shopping for myself. I see glitter and sparkle and I can't contain myself!
I am off now to go pick up a few things. I am making Paul come with me. He can help shop and control me in some way!

Hugs,
Michelle

2010-11-08T19:15:00.000-08:00

Paul and I had the greatest trip out west. We got to see our precious new twin nieces. Paul was a natural holding them. It was wonderful. Our 6 year old niece Olive is beautiful. She has grown up to be an amazing little girl. I loved spending every minute with her.
We then headed to San Fransisco for a few days and then moved along to Napa. We spent time with some many wonderful friends. I am learning more and more about the West coast and hope one day I can get Paul to move. Nance...you have to help me with this one.

On another note.
I really beleive when you shed bad energy from your life, you let more positive in. Maybe it's that I started to look for the good things in my day instead of the the bad stuff. That might be the key.

I went to a scan in the city on Thursday and waited for hours. Long story short...The kid at the desk was a jerk, trama patients take priority ( I was one of those once) and I waited hours for a scan that never happened. It was a train ride, a trip to the hospital and dinner with a great friend. All in all, it wasn't a big deal that I rescheduled my scan. I promised myself to not let those things bother me. I promised to not let mean people bother me. It was just a long day.

I am so much happier letting things roll off my shoulders. It's eisier than harvesting negative-ness.

So many wonderful things are happening around me right now and I am honestly floating through my days.

I do have a lymph node that I need to remove. I am getting things done to make that happen. I am just enjoying the happy moments in my life.

Enjoy the good things today and tomorrow.

Tornado and Scans

2010-09-27T21:01:00.000-07:00

Good Evening

I was just going to bed and realized that I haven't blogged and so much has happened in the past two weeks. I guess I will just sum it up in a few lines. It's a very long story.

Thursday I went into MSkcc for my Brain ( maybe a blood clot headache mystery) Mri and a Tornado touched down in Queens. So I stayed in the city with some friends and Friday I ventured back to the hospital for 2 more Mri's. It was a fun filled two days!
Saturday, I supported a fantastic friend and slept in a Tent with 10 other girls! It was great and I had so much fun. The weather was perfect for a beach party and sleep over. A memory I will never forget!

It's been a very exhausting week. I have had so much on my plate. I spend my mornings on the phone returning Dr's calls. I am looking under every rock for anything new about Sarcoma. There has to be more out in the clinical Hospital world. I just want to make sure that this drug is really "It" for me.

On another note:
I just want some peace in my day to day. I am letting go of some negative-ness that has blocked my spirit this past week. It's now removed from my body and flying somewhere else. I am starting to clean up the house, frienships and my body of just crap that holds me down. It's nice to be clean!

Results:
My scans came back good and I don't have a blood clot! Lot's of scar tissue from the last surgery. They are still not sure what's causing the headaches. I have now had one for three days. The lymph node on my neck showed up on the scan. It's on the right side located near the one he removed last summer. Pray that it stays in it's comfy spot and doesn't travel. I don't know when I would even remove it. I couldn't imagine going in for another surgery. I am hoping this drug works.

Michelle

Alien Brain!

2010-09-12T09:05:00.000-07:00

Check out the strange alien head picture below! That's my brain with a tumor sitting under my scull!!
Look right above the white arrow and you can see it! I had no idea that it was that big. I wouldn't of been doing cannon balls in the pool right before surgery. Wait, that's not true...I would have been doing them.

It's been a month. I have to say that I really thought I was going to bounce back quicker. I am feeling so much better now and happy that I got through it. My headaches are finally easing up. I still feel weirdness in the area of surgery. That I know will take time. Getting back to my routine. Started dancing and working out (12 minutes on the elliptical counts) !!!!!

I went in last week to see Dr. Doom and to talk about treatments to keep the cancer calm. We came up with a good plan. I want everyone to know that I refused to get on the scale. The nurse just looked at me and shook her head. She then said, " How much do you think you weigh?" I told her to write that number down. She made me get on! I just closed my eyes and didn't look. Three weeks of caramel popcorn & Jersey shore re-runs adds up.

.
Hugs and Alien Brains,
Michelle

My strange Tumor!

2010-09-12T08:50:00.000-07:00

Silence is perfect

2010-08-30T22:33:00.000-07:00

I can't stop giggling at my last post. I was on way too many pain killers to be blogging. I will not delete or change it, I find it funny.

It's been over 2 weeks since surgery. Boy, did that one hurt. I am finally feeling better. I saw my surgeon last Thursday and had my stitches removed. I told him that I have a headache that's been constant since the surgery. He was puzzled. He put me on celebrex to help with any inflammation. It's been four days and the pain is still happily bouncing in my head. I hate popping pain killers every time I have pain. I want to just push through it, because eventually I feel better. But, this time I have no relief. I wake up and it's just lingering, waiting to get worse. They switched meds today and hopefully it will get better.
Moving forward. I see Dr. Doom on Friday. Wondering what he's going to try to plan for me. I am all ears, but difficult to convince. I am petrified. I just want this to be over.
This surgery scared me. I know in the pit of my stomach that I need to do something. I just feel like not moving, not breathing...just being still. Maybe it will all just go away. I wish it was that easy.

About my feelings....
I started my meditation today. I sat outside on my Yoga mat and just started to breathe all the good air back into my lungs.. It does help to be still. I need some help to clear my mind. I am constantly going. I am getting back to that place where I can not relax. I hate that feeling. I enjoy being quiet. I enjoy being alone, within the walls of my home. I find it so peaceful at times.
There are so many things going on around me. I need to stay focused. I am having such a hard time right now. I end up focusing on everyone else's issues...and not my own. It really was great to have the phones unplugged and my home silent. I need to start doing that more. Once I open my computer or turn on my cell phone my life gets complicated. It's like other peoples crap, jealousies, insecurities, drama, issues, and bullshit just fill all the good air that I have around me. I decided to wash my hands and thoughts of this nonsense. I need to get back and stay grounded to my true self. I want to start dancing again this week. My goal is to do more yoga and find some peace. Then I can turn the phones back on and deal with life. I don't have to do anything.....I have to get better. I have to and I need to.
From now until...We'll when I decide....I am silent. I am going to give myself the time to think. Time to heal and time to enjoy my private, quiet moments alone. Maybe my headaches will go away.

Big Hugs and Shhhh :)

My Lucky Helmet

2010-08-15T11:25:00.000-07:00

The surgery was the total opposite of what I and Doc planned. I got a phone call on Thursday after my scan that the radiation disc had a leak and will not be used. I was really looking forward to trying something new. Even though I haven't had a reassurance in any of the areas they have removed tumor from, I was worry about cell transfer. Transfer from instruments that has happened to me in the past. The disc was an extra comfort to me. I was going to put it off surgery this past Friday and change the date. I wanted to use the Radiation Plaque. My scan on Thursday didn't even show signs of growth. I realized it's better to get it out now. Not to wait for any kind of damage that would make it harder in the future.

Surgery was a success. Dr. B patched the Dura and reconstructed my scull with synthetic plaster. Because, we mapped my scull out with MRI from the night before he was able to use an incision I already have. That was great. No "U" shaped scars!! I wasn't happy about that. I know I don't have too many choices, but happy that it was done this way. And, I still have all my hair. They wrapped it tight with a Turban Bandage. I call it my Helmet! Everything was all snug underneath. Quite cozy.

I came out of surgery not feeling that great. The Anesthesia really wiped me out. I was so sick. The nurse called it, "Violently retching!" Lol! It did get bad. I had to hold my head because I thought it was going to open my incision. After they pumped me with every drub possible I had a feeling of the shakes and panicky. They gave me a anxiety pill that let me sleep for a whopping 2 hours. Then I sat laying with lights in my eyes, finger pricking and urge to puke. I never slept a wink.

Saturday, I was transferred out of the PAC Unit and onto the Nuero floor for observation. My screaming roommate provided me with no sleep. After her 20th HELP call , I begged the nurse to please check her. They got her Dr's in that did something right, she slept. Not me though! One nurse was so sweet enough to spill water on her. That's when I paged my doc and asked him to move me. It's horrible when you can't sleep and a restless roommate doesn't help my sanity. Worst part is that I know exactly how that lady Emily felt. I was there and it's not fun.

Last night I slept like a baby. Got off the Dilauded and heavy pain medicine. Pretty catheter came out. Yeah pee time! They took out 3 of my four IVs. My arms and wrists look awful, I can't bend them just yet. They let me eat and walk a little bit. I even did stairs, big accomplishment. Don't ask me how...I was a total mess! I just needed to get off that nutcase floor.

Paul and I had a romantic Percocet-comatose dinner last night. Nothing says I love you more!
I am feeling ...ok. Tired, sore and cranky. I got my lucky helmet off, and that was a funky mess of blood and nastiness. All the lovely bruising is coming to the surface. It's when everything hurts the most. Wait...scratch that...Friday hurt the most. Saturday was complete torture! Today I am sleeping!

Peace and Sleep
Michelle

Glitter

2010-07-27T20:50:00.000-07:00

Glitter In The Air

By P!nk

Have you ever fed a lover with just your hands?

Close your eyes and trust it, just trust it

Have you ever thrown a fist full of glitter in the air?

Have you ever looked fear in the face and said I just don’t care?

It’s only half past the point of no return

The tip of the iceberg, the sun before the burn

The thunder before the lightning, the breath before the phrase

Have you ever felt this way?

Have you ever hated yourself for staring at the phone?

Your whole life waiting on the ring to prove you’re not alone

Have you ever been touched so gently you had to cry?

Have you ever invited a stranger to come inside?

It’ sonly half past the point of oblivion

The hourglass on the table, The walk before the run

The breather before the kiss and the fear before the flames

Have you ever felt this way?

Have you ever wished for an endless night?

Lassoed the moon and the stars and pulled the rope tight

Have you ever held your breath and asked yourself

Will it ever get better than tonight?

Happy Anniversary, Happy Anniverary

2010-07-19T19:50:00.000-07:00

Seven Years ago

July 19th 2003

Today was the best day ever! We went to the beach, ran around in the ocean and relaxed. Had a great dinner and enjoyed each others company. It was cute...we sat next to one another at the table. It was booth...so it wasn't that weird!

My sis-in-law said it...we have a ton to celebrate.
Paul has been a strong loving husband to me. His compassion and strength is truly amazing. I love him so much and I couldn't imagine my world without him. Paul has been by my side from the beginning. He never complains about anything..scratch that...he's mad because he tripped over the vacuum cord that I left out and twisted his ankle...BE HAPPY I VACUUM!

We met in 2001...He had on an orange hat. We dated...went to Vegas a few months later. I dared him to marry me in an Elvis Chapel...He wimped out. We got back home and then I moved in. That's the quick version.
A few years into our relationship I had my first brain surgery. He held my hand 8 years ago .... Married me...and continues to take care of me. His patience is unbelievable...really it is! I am not the perfect patient!
I know I do so much for him too...and that is why we balance each other out so nicely. I have put up with years of snoring...and I finally found the perfect ear plugs!
You have my heart... I love you Paul.

Quick Blog Update

2010-07-18T21:09:00.000-07:00

Thank you everyone for the Birthday wishes.

It was tough this year to celebrate. I love Birthdays...and for some reason I lost total love for my own. What am I celebrating this year? I know that there are many things..good things. But, the weight of another sugery has clouded my head.

Let's move away from the Birthday Party..and step into the Anniversary.
Tomorrow (in One minute ) is my 7 year Wedding Anniversary! I can't believe that it flew by so fast. I'll post some great pictures tomrrow and blog more.

Hugs,
Michelle

The Great Fall, Boobie Milk and Surgery

2010-07-07T08:44:00.000-07:00

My Fall down the stairs...or off the stairs ....is now called MY FAILED SUICIDE ATTEMPT! I still have no idea how I ended up backwards. I am adding humor to it, because my back is killing me and I need to move on from the pain and humiliation. Call the house if you would like to hear Paul's version of me screaming!
Doctors visit was better than I thought. Past scans showed the cancer growing in this spot for sometime. It just wasn't ever big enough to pick up. Good news is that it's slow growing in this area. Dr's couldn't give me a reason to why it's there. They never really can. Silly Cancer likes hanging out in my head. The surgery will not be as invasive as we thought. My Surgeon (Brain Guy) and Radiologist (New Dude) will try something different. They will remove the Cancer from my scull and Dura ( gooey part around the Brain). Patch it all up.....clean what they can and then...This is great....Radiate me! New Doc will put a small radiation disc in the area where the cancer was to kill microscopic cells for 20 minutes. They will remove it and stitch me back up. It's like a double whammy surgery.

Mom....I lied this morning to you. I told you I ate breakfast. I know how worried you get about me taking care of myself. I can't eat today. Yesterday, I could of eaten my entire fridge. Condiments and all. I'm juicing...so technically I am just eating liquid veggies. I promise to eat lunch...I know it's too hot to not eat.
I am feeling it a little harder today. It's now a reality. Cancer stinks.

I am waiting to hear back from the Nurse to schedule the surgery for August. Brain Doc said 4-5 weeks. I said, " No, how's 6-8 weeks?" Paul just shook his head. It's slow growing..and I have a tan to keep up! I always cancel things and shift my life around for surgery. It can wait an extra week.

Sis..Nance..I left a message too. Hoping they get back to one of us.My sis-in -law has been doing research (awesome cancer sidekick family member!) on the positive affects of Breast Milk. Has anyone done any research on this? I need feedback. Calling a place in Sweden that she found.
Check it our Cancer fighters!

http://www.sciencedaily.com/releases/2010/04/100419132403.htm

Word of the Day
The dura mater (pronounced /ˈdjʊərə ˈmeɪtər/), or dura, is the outermost of the three layers of the meninges surrounding the brainand spinal cord. The other two meningeal layers are the pia mater and the arachnoid mater. The dura surrounds the brain and the spinal cord and is responsible for keeping in the cerebrospinal fluid. The name "dura mater" is derived from the Latin "hard mother",^[1] and is also referred to by the term "pachymeninx" (plural "pachymeninges").^[2] The dura has been described as "tough and inflexible" and "leather-like".^[2]

Big Hugs for Elsa...Thinking about you. We are strong fighters! Love you

Weekend Results

2010-07-05T08:41:00.000-07:00

Not letting crummy news completely ruin my weekend, I packed my friend Diane's car and headed out to OUR beach house out east. It's technically Sarah's house, but Diane and I tell everyone it's ours. I do have my own room key now...#7...so it's kinda mine too! The girls hung with the kids for a few days while we waited for our prince charmings to finish up the work week and rescue us. We just needed help with the beach chairs...and to bring us lunch.

It was a nice weekend, spent with great friends who helped me get through the shock process. Spent sometime with Paul's family out in Montauk on Sunday and then headed home to lounge on the Boat.

While we were getting the doggies squared away...I fell. Yes folks..I did a backwards dive off a 4 foot wall in the front of my house onto my back. Don't ask me how it happened. Paul is still trying to figure out how I was able to do it. I was running down the stairs and just slipped...my feet were moving faster than my brain!
Let me first tell you about the pain that ran up my back and butt..and then the burning of my legs, arms and back. I fell onto a 110 degrees driveway and seriously couldn't put my hands down to lift myself, it was so scorching. Like I said...Paul is still trying to figure this one out! He spent the rest of the day watching me very closely....telling me to be careful!

We made it onto the boat and watched a wonderful firework show out on the water. It was one of the best. The refection of color off the water was spectacular. I felt my cheeks hurting from smiling so hard. It was the perfect end to the weekend.

Birthday countdown: 8 more days!

Let me ruin your holiday weekend!

2010-07-01T21:13:00.000-07:00

News came as a big shock on Tuesday. I prepare for bad and good news. Really I did. I was in the shower washing my hair and actually played out getting the great news and clean pretty scans. Then I went over the shock reaction of the bad news. Followed by me saying no no no no no ..no. Things are going to be good.
I do this so when I get the bad news..I'm not that surprised.

Tuesday was a surprise. It's always still a complete shock.

I have sarcoma growing in my scull..hanging out on the inside. The scan showed a new nice size legion on the left side..kind of behind my eye..above my ear..up there somewhere.

July 6th I will learn more. Meeting the team for a game plan.

I feel as though my future was erased, again. This is how I experience my news. I see a big fat eraser moving over my July, my august..my year of 2010. I'm totally wiped out. I don't get upset about cancer. I get upset about what it is doing to everything else in my life. I'm again in a holding pattern above my body and I'm just going in circles.
It's getting harder to watch my husband tear up. He's so strong for me. But, I know it hurts him to watch me go through this. It breaks my heart to watch him try to hold it together for me. I know he just wants to scream as much as I want too.

I keep rubbing my head thinking that it was just a dream. I have to remember that I chose this path. I didn't want harsh drugs. Chemo is not an Option. Was I suppose to radiate my whole head? I made a choice and new that this might happen. I knew it was going to get worse. Stupid cancer cells are not going away without a fight.

But, I'm lost. I want to just throw it all in and walk away. I want to give up.
I know the strength is in me somewhere.. I'm waiting for it to emerge. I'm not there yet. I'm in a low right now. I'm feeling very angry and bitter. This is not the life I signed up for.
It's not what I had in mind at all!

Sorry, that I am totally being a fun-sponge and ruining your weekend. Doc said it perfectly Tuesday..... Never get results before a holiday weekend! Yes, totally crapped out the weekend....my birthday that's in july ( 13th, I'm a size 8 1/2 shoe... Hint) and my summer!
Having a drink on me. I'm sure I'll have a few too.

Hugs & peace

2010-06-26T07:38:00.000-07:00

Paul said it perfectly, "You are upset because you have lived a normal life since February"

I took one look at the hospital gown, the port in my arm and started balling my eyes out.
Over & over in my head I kept thinking, I don't want to be here. I don't want bad news, I don't want my life to change again....I don't want to add another page to my Hospital journey scrapbook. I have a weekend + 2 days to go.

I use to find it funny that I new every hallway, every floor of the hospitals. I know which floors have the hot chocolate machines! One time we were waiting to see Dr Maki and the machine was broken. People were standing around holding empty coffee cups. I said," Hey, let's take the elevator up to 8 and get it! I know they have a mocha latte's too!" I crowded in an elevator with a few people and we rode it up to coffee heaven.

I am taking a very deep breathe and look forward to a beautiful weekend.

Hugs, love and many smooches!

Cowgirls and Sunblock

2010-06-23T19:14:00.000-07:00

I realized that I haven't blogged in a while. I've been busy enjoying the outdoors.

Paul and I got our garden in and it has grown so much. I already have tomatoes. They are green..but growing. I think we put in eight tomato plants, one eggplant, two cucumbers, string beans, herbs...and peppers. I love watching everything grow. I'm going to have a wonderful salad in a few weeks.
I've been playing a ton of tennis and getting so much better. I look so darn cute in the skirts....how could I not play! Tom and I are proud to say that about two weeks ago we kicked butt on the courts against the sacksteins! Sorry di! Keep practicing Princess!

Last Friday was cowgirl night at dance. I've been pushing the cowboy theme for a long time. I Love boots! I Love cowboys too!
Kristen is a tropper..she totally rocked the dance floor dancing her two-step! I owe you darling!

My aunt diane has been having ceizures. Diane is 51 with down syndrome. I'm with her now hanging out. She just had a big bowl of ice cream and is looking at me with puppy eyes for more. I bribe her constantly. Have a glass of water ( does not like water) and I'll give you a muffin. She LOVES blueberry muffins. I'm surprised that she hasn't turned into one.

I'll post some great pictures of us cowgirls.

I'm feeling really good. I have my scans tomorrow in the city...53rd street if anyone is going to be around. I'll be the girl pacing on the 8th floor :)
Next Tuesday I will get the results....please keep your fingers crossed. It's going to be a long weekend. I already have an upset tummy thinking about it.

I giggle when I look in the mirror. My body is golden brown and my face and neck is pale white! Sunblock...it's hot out there! I am scared to tan my scars on my neck. And...I started to get my sun-stache! It's a mustache that comes out when I am too tan. No really...it's there! I wear zinc on my upper lip. I look like an idiot!

Rock the Cowboy-girl boots and please protect the stache from too much sun!

Yee-Haw!

Billy Robsky

2010-05-15T20:47:00.000-07:00

October 4th 2008

I met Billy Robsky for the first time at Kripalu in Massachusets attending a Crazy Sexy Cancer weekend retreat. We sat in a big circle with a group of about 50 people who have been touched or affected by Cancer. On the second day we had an excersize that we had to partner up with someone. It was like being picked last for kick-ball! We were the last two standing! Billy and I looked at one another and spent hours hula hooping and laughing! That was the day that I made a wonderful friend.

Billy was my Cancer buddy. We talked about our struggles, doctors appointments and dreams. We cried often and we laughed a ton. Billy taught me a lot. He taught me to not always listen to the doctors! I have to go with my gut! His advice has saved me in so many ways. I thank him for that advice. We both wished for things to change. Always hoping the bad times were behind us.

Billy, everytime I look at my hula hoop I will think of you. You will always have a place in my heart. You were my friend and my buddy. Thank you for listening and helping me through the hard times. Thank you for teaching me to fight and to kick this cancer in the butt. I have been blessed by angels to have met you. You were the kindest person I have ever met. You will be missed.

Please say a nice prayer or thought for Billy's wife Lynn and Family.

Hugs & Hula
Michelle

Mother Teresa

2010-05-09T14:05:00.000-07:00

My friend Diane gave me a book a while ago..." Don't forget to sing in the lifeboats."
It's a cute book with positive sayings.
Two of my favorites.. First, from Mother Teresa.... "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
and " Life's a Bitch, You have to go out and Kick Ass!"

Here I am on Mothers Day. Thankful to have a wonderful Mother. Greatful to have a wonderful Mother-in-law. Yet I feel so sad today. Because, every year I have only asked for a simple request. Cure me. Cure me , so Paul and I can move on with our lives. We want to enjoy the next step of being parents. Cure me, so I can be a Mom. Cure me, so I can give my husband the family he always wanted. Cure me, so I don't feel like such a failure.

Every year I say...next year will be my Mothers Day. Now I am watching this one pass by.
Maybe it is true. I couldn't handle anything else in my life. Taking care of my health was number one. I know it's made me a different person. A better wife, a better friend and I will be a better Mom because of my struggles. It's taking me longer than most...but, I will get there.

To all the Mothers out in this world, Happy Mothers Day. Give them a squeeze and let them know you love them. For every Diaper change, every tantrum, every time they make you stay up awake, waiting until 2 in the morning..past the curfew..wondering what in gods name they are they doing!....It's a Gift.

One more time...Next year I will be a Mom!

Happy Mothers Day

Concord, Mass., Votes to Ban Sale of Bottled Water - AOL News

2010-05-06T07:18:00.000-07:00

Concord, Mass., Votes to Ban Sale of Bottled Water - AOL News

Good Luck!

2010-05-02T16:08:00.000-07:00

I am nearing the end to my Portland, Vegas, California vacation.

I spent almost a week in Portland, Oregon with Nancy, Heather & Olive...and don't forget the TWINS! I was able to join them and there friends for the baby shower. It was a great day and I got to meet so many wonderful people. Saw an amazing Ultrasound of the baby's..TWINS! We drove through the country and visited a farm with those tall sheep looking animals..nancy help me out...what are they called...Alma-laca-things??? Alpaca's!!!

Tuesday I traveled to Vegas to meet up with my great friend Chandra. We drove through Nevada and spent 5 days at Newport Coast, California. The Coast is beautiful, Laguna Beach, Balboa Island..love it.
Slept, watched sunsets, walked the cute shops and spa-ed it up.

We just got back to Vegas and I am a little nervous. I have had this gambling itch since I landed. It subsided for a bit in Cali. That's only because I was busy trying to pick out my new home. Hint, Hint Paul!

Heading home tomorrow. Missing my Hubby and Doggies :) Can't wait to see you!

Wish me luck ! Hopefully I will come home as a winner!

Love,
Good Luck Charm!

Today

2010-04-10T09:28:00.000-07:00

Ok! I am not in hiding. I have been a very busy bee. I feel wonderful. Working out and getting my beach body (HA!) back into shape. I am not really sure what shape that is! Lot's of extra-ness happening on this body. If anyone knows a way of getting rid of leg and arm gigglies...let me know.

Spring cleaning today. I was going to plant flowers and work in the garden. Maybe later..it's a bit chilly here today in Ny.
Elsa...when do you start your beautful garden?? I know you love flowers.

What's new..so much and not much!

Enjoy this beautiful day. Love life and live!
Michelle

Spring!

2010-03-23T09:44:00.000-07:00

I was going to type up a nice blog..but have been distracted by my dog Bandit growling and barking at me for the past 10 minutes. It's because I have soup and she thinks she is getting some. I swear this dog is going to eat herself to death. Thanks goodness she's tiny..she can't get to the counter or into things. She is such a fatty.

Update: I am good, happy it's Spring time. Eating great and working out all the time. Dancing is the best! I learned the Tango! So much fun.
I am heading over to see my fertility Doc about options. I want a little baby. It's time for Paul and I to make some decisions. Nervous, but excited.
I am praying and believing that my cancer, my body will be at peace during this time. It has to let me live a little. I can't keep doing this surgery crap for the rest of my life.

I have been feeling a little distant from things and people. I feel very emotional and tired. Taking care of my needs, which is always a good thing. I turn my phones off a ton. I am not being rude, just selfish. It's nice to hear nothing.....quiet time.

Enjoy a moment of quiet time. Don't get mad if I don't answer :)

Blue

2010-03-05T19:18:00.000-08:00

I had a great week getting my life back after another shove backwards from the cancer fairy! I am becoming a expert patient. I may start saying that I am a Surge-aholic. Except I am not really a fan of surgery. I still like the fluffy blue socks they give me. Blue!

I posted a great picture that Paul took of me in my lovely unflattering Blue paper gown.
Speaking of Blue! I decided that if I want to do something ( that won't hurt me or drive Paul insane), I must do it! One life! One chance to do what you want!
I dyed a chunk of my hair electric blue! It looks Fantastic! Now, I am blonde with a stripe! It's permant (Thanks Janet!). Don't worry I can always dye it back.

Now what??
I am juggling chemotherapy options in my brain. I am not sure what to do. Do I wait for another tumor? More surgery? If anyone has an answer please let me know.

Still Breathing. Still Smiling. Still wishing I was on my own island with a frozen drink!
Blue Hair....checked off my list! I am not wishing for that anymore.

Love and Hugs,
Blue

Happy Valentines Day

2010-02-14T10:20:00.000-08:00

Love, Love, Love

I can see some of my Valentine today! My poor right eye is completely swollen! When I woke up I tried to pry it open! The beuty of healing. I'm not so beautiful right now.

I slept through the night and feel good today. I am getting ready for an afternoon nap.
Then my butler Paul will make me lunch. Talk about being pampered today! Surgery worked out great with this holiday. It's like double the love.

I hope everyone enjoys Valentines Day. Remember to tell everyone around you how much you love them. Life is busy...so use today as a reminder day. It's about loving everything around you.....your dogs, cats, friends and for me ADVIl!

Have a Sweet Day,
Michelle

Free Botox...kind of! Surgery for the stars!

2010-02-13T19:59:00.000-08:00

Surgery again....Whew!

I had another surgery yesterdy morning. Paul and I got to MSKCC at around 8 am and did the usual check in.
I was pretty calm until I got into the operating room. That's when I completely lost it. Oh the tears! I think I scared everyone. I was really contimplating about getting up and calling it a day. That's when they most likely decided to slip me the happy drug. I don't even remember feeling woozy from the pre-knock out cocktail. I just passed out.

Doc removed a tumor from my temple area. He got it all out and then some. About the size of a quarter. Unfortantly, my nerve was cut. Good news about that..Doc saved Paul thousands on Botox injections! I will now have a perma-brow! The right side of my face in wrinkle free! I am so swollen and I am bruising up pretty fast...but I may have a crowless eye! How amazing! Except I am wondering if I am becoming 1/2 angry...1/2 happy face?? Hmm I have to check that out in the mirror tomorrow.

I stayed one night in the hospital and now I am home recovering in my bedroom filled with Roses from my Valentine. Love and kissed to my wonderful husband. That man sleeps on pull out couches with metal bars digging into his back all night...for me! That's love.

The Future..... spaceships....
I am going to send out reports, scans and my history ( good luck reading that bible) to a few Doctors I have met along the way. To get a few ideas. Maybe a nice round of Chemo will help. Not really sure what anyone is going to say about me and My Sarcoma history.

Something has to change. These surgeries are brutal. I get through them like a champ...but, boy am I exhausted. One more day of percocet and then advil will be my new friend for the week.

Happy Valentines day everyone. Lot's of love and kisses to all.

Love,
Michelle
A 1/2 Botox-ed lady!

14? Is that a lucky numer...better than 13.

2010-02-04T11:05:00.000-08:00

We'll I am pushing forward...Doc gave me the rusults after my MRI's on Tuesday. It's a Tumor!

I don't even know why I bother getting these scans done. I know what's going on even before they tell me. I can feel them (the lovely tumors) growing. 3 weeks ago I felt a difference. I had a headache and I was rubbing my temples. I felt a small bump, like a piece of rice on the right side..by my eye. I knew..and even when Paul & everyone else said it was a pimple...I knew. I am getting better at containing my concern. I guess apart of me really hoped it was nothing.

Now what?? I will see Doc B. on Tuesday and schedule surgery. Lucky number 14!

Good news...my neck and other parts where I have done radiation or surgery are clean. This is great news.

Yes, I am disappointed. But, I have also accepted this as part of my Life. My journey through this world of endless MSKCC slippers (Free when you get a tumor removed)!

Hugs,
Michelle

Pep Talk

2010-01-26T19:46:00.000-08:00

I am only thinking positive this year. I think positivelyness (totally made this up) is coming out of my pores! That means nothing negative....I have my force field on. Ready to block it out!I And, I have been doing a great job.

Since I don't have a New Years resolution, I decided to start with doing the things that I love..or have put off. I have been religiously going to dance class ( quick mention......The Ballroom of Huntington) a few times a week. I got myself into an amazing workout plan. I have been dedicated to keeping my body happy.....and therefore I am happy. So, I jumped into a weekly schedule of fun-ness! Yoga, Dance and getting my butt kicked by my trainer Susan.

Paul is super excited. Not only do I have my days filled with wonderful things to keep me busy...I am not shopping!
Dance + Workout = Less shopping for Michelle. This equation makes Paul a very happy man!
The problem is I have a perfect spot in my shoe closet for the new spring collection. I hear my shoes crying when I close the door...Please Michelle bring us a new friend! Oh, it breaks my heart...my Jimmy Choo suede sling backs need company!

Getting fit may keep me out of the mall, but I still have a computer to do some online shopping therapy.

I am trying not to think about my scans that are next week. Ohhh..this huge gray cloud is just hovering over me. Everything will be fine. Even if I get bad news from Dr. Doom. I can get through it. I sat myself down ( no really I did..it was very interesting conversation that I had with myself!) and gave my heart, my brain, my stomach...every inch of my body a pep talk. I told myself this...
I will be dealing with Cancer for the rest of my long life. I will fight and continue to live. Cancer will not break me. I am ready
for anything. I am not scared, I am determined to beat this!

I hope everyone is having a wonderful January.

Shout Out:
Pepper and Bandit lost a Doggie pal, Bo. You will be missed my four legged friend.
Happy 32nd Birthday to Mary Kay!

Hugs & Kisses to All

Robert's 30th

2010-01-26T19:28:00.000-08:00

These are a few pictures from my brother Robert's Surprise 30th Birthday. We had the best time! Elvis stopped by and sang a few awesome tunes for us. It was so great to see my brother smile, he was so surprised. I love seeing him happy!
These are the times that I am so thankful for my family and friends. To have everyone together to celebrate a birthday...LIFE! It is so wonderful and beautiful.
I know a ton of people that say...Oh it's just a Birthday. What! It's a day that you get to celebrate your life...another year older. A Year! Don't take for granted those Birthday's. Blow out that candle. Congratulate yourself for being a year older...for living! I think Birthdays are wonderful.
Call me on your Birthday and I will make you a cake!

2010!!!

2009-12-31T21:06:00.000-08:00

HAPPY NEW YEAR!!!!

2010 HAPPY NEW YEAR!

2009-12-31T15:13:00.000-08:00

Dear Friends,

I have been walking around thinking about this past year. I love the celebration of a New Year. I love that tomorrow I can wake up and say that a whole year is behind me. I can pick apart the days, take the good out and leave the bad behind. Carry beautiful memories into the New year. Learn from mistakes and change. And in some cases, not change a thing.

My resolution... Continue being strong!! And...... a few other things! That's another blog entry.

Thankful – feeling or expressing gratitude; appreciative.

A word that someone recently brought to my attention. I have thought about the meaning of this word a ton lately. Especially since it's the Holiday season.
I am thankful to have survived 2009. Thankful for given the year. Yes, some parts were absolutely crappy...but it was my year! And...I loved it. I am thankful for everything and everyone in my life...and white wine (it helped!)!

Welcome new babies of 2009 & the ones joining us in 2010. Goodbye to those who have passed, now looking over us. Thank you to my friends who read my blog and for all that are apart of my life. For the support and love you have shown. Most of all... for listening.

Kisses to my love..Paul. You are still the reason why I fight...I love you.

Big thanks to my dogs. Pepper & Bandit. Bandit graced we with her presence after she rolled around in her own poop...and lovely Pepper thought it would be funny to wake me up this morning at 6:30. Finally after her pacing & barking I got up to find a nice gift of morning POOP on my bathroom floor. The irony...... even the dogs know how Sh*tty 2009 has been!! :) Ironic that today started off with poop!

Have a Healthy & happy 2010!

Hugs & Love,
Michelle

Happy Holidays

2009-12-23T18:57:00.000-08:00

See You Later 2009! It's almost OVER! I just have to get through Christmas!

Whoa I am so happy that this year is coming to a close. I thought it would end nicely...but boy the last few weeks have been stressful. Scratch that...10 days away from the nonsense was a treat! Nothing but sunny sky's & guacamole.

Now I am just finishing the last minute details of Christmas Eve. Wrapping..cooking!

Happy Birthday to my brother Brian and my wonderful friend Natalie! The Christmas Babies.

Paul and I want to wish you a very Happy Holiday.

Lot's of Love,
Michelle

Quiet Time

2009-12-06T04:30:00.000-08:00

Hola!

10 Days of peace and quiet in sunny Mexico! I left my cell phone and computer home and plan on having a very relaxing vacation. I can still steal Paul's computer if I need a fix. We haven't even left the airport and I have to update my blog!

Things (Dr's & cancer stuff) are still the same. I canceled all my scans & appointments for December. I figured I had enough for one year. I have been feeling more human since I stopped walking the halls of Mskcc.

Please send extra prayers to two of friends that I met in Boston, Cindy & Eric. Eric..we are chearing you on. xoxoxox

Love, Michelle

2009-11-10T18:46:00.000-08:00

I have had a busy week and it's only Tuesday! I called my Surgeons office and cancelled my appointment for today. It was really a routine checkup after surgery. I gave them a brief diagnosis over the phone. Incision is healing nicely and no complaints. I failed to mention that I ripped off the steri strip too soon ( It was suppose to fall off) and it bled for a day. It was dirty...and everyone knows how I feel about germs!

I have a fundraiser on Thursday for Good Samaritan Hospital that I volunteer at. I am Chairlady of the event. I really just like saying Chairlady...I am sooo important!

Tomorrow I say goodbye to my pretty car. Thanks for the nice driving and letting the wind blow through my hair on the sunny days that I felt like complete crap.
My car is really special to me...I know that sounds silly. I will explain. Three years ago I was having a really hard time. I wasn't getting along with friends, my family was driving me nuts and I had this unknown bump on my forehead. I was super sad for days when Paul told me to get into the car....we were going car shopping. My truck lease wasn't up for months and new I wasn't ready to buy another one.
We walked through the showroom and that's when I saw the love of my life....my soul mate! Alright...my second soulmate! Paul stood next to me and said the words every girl has been waiting to hear, " PICK ONE!!!"" I was speechless. I picked out a beautiful convertible. And, that beautiful convertable sat in my garage for 3 whole months while Paul drove me back and forth into the city every single day for Radiation treatment.
I would get home, go into the garage and sit in it. Waiting for a sunny day to take her out.

I disliked Paul's car. It reminded me of a time that I hated. Every single day was the same. I'd get up...get into Paul's car... sit in traffic...wait for treatment...smell burnt brain and then we would drive home and sit in more traffic. I don't like Paul's car! I would get into my car and breathe. Driving it made me feel like I had some control over my life. This car has been in my life during my worst times...Radiation...Chemo..Ugh Boston! I remember coming home on weekends from Boston. I couldn't wait to drive her....it was an excape...that made me feel good.

Friday, I am back in the city to see Dr. Doom. I already called and left a great complaint with the staff! I want a game plan when I arrive. None of this, let's see what happened nonsense. Figure it out Doom!

So that's my week.
I do get to celebrate with my gorgeous friend Michele tomorrow for her Birthday. I love Birthdays! Happy Birthday Mich!

Mrs. Potato head

2009-10-30T21:00:00.000-07:00

12 head surgeries! Amazing that I haven't turned into Mrs Potato head! I have to pop in my Angry Eyes!

We arrived 1/2 hour late this morning due to traffic. I loved that I was reprimanded for being late. He asked me what time it was...like I was a child. I also love Paul's come back response. He said, " OK, so the 10 times before this that we were early and waited around because you are never on time doesn't count?" It was very funny. After that the desk guy kept coming in to check on me. Ha!

After the nurse tapped my hand for 40 minutes looking for a vein....I walked into OR #2. I just have to add that I think it's so funny that the hospital has signs all over, WASH YOUR HANDS, STAY CLEAN. They give you a lecture about no deodorant (I don't use anyway), perfumes....because it's not sterile. But, then on the say of the operation you walk the nasty halls, use the bathroom in gray thin gross socks, jump on the table in them and its OK?? What is that?

Dr. Boyle said the lymph node came out nicely and he looked around the area to see any signs of spreading. It looked nice and clean. The biopsy did show spindle cell sarcoma. I am thrilled that it wasn't anywhere else. Not jumping for joy yet. I have learned not to get too excited. Positive, but realistic.

I am feeling good, sore. I am just taking Advil for the discomfort. I haven't felt any pain, just bruising and stiffness. My throat hurts more from the breathing tube...ugh I hate that thing.

I will get a scan most likely in 2 weeks, see Dr. Maki and then will start making decisions about the next step. I think it's time to get a little more aggressive. These bad cells in my body are having a field day!

Have a spooky Halloween!

Hugs, Mrs Potato Head

2009-10-23T07:03:00.000-07:00

I'm use to the surgery process...especially the mental part. I just hate going through the emotions. I especially hate when the shock becomes anger. Because, I know the next step is sadness & fear. Yesterday I was still upset. Today, I can feel it welling up in me. A huge ball of tears that will land me with puffy eyes all day. I can feel it breaking me down inside. This is the part that I hate. The worst part is that I have a whole week before surgery.

I hate this feeling that's turning my stomach. I hate surgery and I hate cancer.

It's Back!

2009-10-21T20:53:00.000-07:00

This part of my life is complete nonsense. I am over the drama of it all. I am over the saying, "Things happen for a reason." Frankly , they should not be happening anymore. I did my time!

I actually spent a month not talking about myself! I brought all the unhappy cancer talk to a halt. When someone asked how I was....I said great! I was able to put everything in the past.

I just knew it was going to be back. My gut told me that things were not right. This dumb lymph node felt funny. But, I really felt it would just go away.

It's the reason I missed my last appointment. I knew something was wrong. But, I needed some time to not think about it. I just wanted to relax before another surgery. I wanted to pretend that I was clean...that my scan showed nothing...that things were getting better. Yet, here I am back at square one. More anesthesia, more needles...more of everything I despise.

They took two biopsy's of the enlarged lymph node under my jaw. Doc had the pathologist come down to test it while I was still in the chair. Funny looking cancer cells were swimming around under the microscope. The best thing to do is to remove it.

I am scheduled for surgery on Friday, October 30th.

This surgery is screwing up my Halloween plan! I am going from a sexy german beer girl to a cut up cancer patient! Perfect! I guess I can keep my IV in and freak everyone out. Thank you lymph node for ruining my Halloween!

Chat soon....Michelle

We shall find peace. We shall see angels. We will see the sky covered in diamonds.

Chemotherapy, Great wigs and A Puffy Smile!

Groundhog Day February 2, 2012

Puff Girl Flys Home

Wish balloons

Hola Brain Swelling!

Grinchness

Blend it up Baby!

Tumors are gone! Blown Up!

HOT MESS

Three more days

Cycle for Survival 2012

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

Stick Chair

Tatoo me

Myelogram & simulation

Dashing away

Never liked liver!

It's BACK!

Doctor Bully & Exhaustion

Eat a Banana

A Letter

Travel Blog

Vaccine for Sarcoma

NED

Steroid Support Group

GoodBye Today, See You Tomorrow

Radiation End Picture!

Poem

Other things?

Awaken

Oops

Big Brain

Radiation Hell is Over!

5 treatments left :))

Fifth week

Day # 18 finished!

What a day!

What to say/do when a friend is sick

‘You Look Great’ and Other Lies

By BRUCE FEILER

Published: June 10, 2011

Fabrik-Studios Ltd./Getty Images

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