so sorry for our loss.

As many of you have figured out by now, our beautiful Michelle passed away last Sunday June 23rd at 7:07 AM. it was her favorite type of day, hot, sunny and humid, the first such day of summer which was her favorite season, hence the name "beach girl"

From following her posts you are all aware of the strength, humor, and stubbornness she faced down this disease with, until the very end she was fighting and never wanted to give up, because as she told me last week, i love you to much to quit. so she bravely took on another round of chemo which was 4 days in a row, each day 11 hours. Sadly, her brain swelling became to much, and she suffered several seizures and never recovered from them. In between the seizures she told me she loved me, I whispered in her ear that it was okay to let go, that she had fought to long and endured to much suffering for one person. I told her I loved her and that we would all be fine. At this point she began to breathe more easily, and passed the following morning.

I was going through her things from the hospital, and i found a slip of paper of notes she was jotting down, she told me about this "Invention" she had for gag gift scented candles that actually had awful smells. on the note the was the following:

MY STINKY SMELL INVENTION

1. onions or scallions and Garlic
2. Rotten eggs (already done in a stink bomb but may be a good seller)
3. Fish-clam (ask Boo) that was her nickname for our dog bandit who loves clams
4. smell of gas
5. Garlic (again)
6. Blue bathroom sanitizer on planes
7. Nail polish remover
8. Hamster cage.

She wrote this out two nights before she passed, once again humor was the fiber that ran through her entire odyssey. if any of you care to bring this dynamic invention to market, be sure to name it after her.

We all loved her very much, please keep her as an inspiration to all who are suffering through this awful disease. The main purpose of her blog was to help others in this struggle with information on clinics we went to, treatments that were effective and how to keep a positive attitude while suffering through this ordeal.

After being diagnosed with Sarcoma in 2007, she endured 23 surgeries, 120 radiation treatments,  3 cycles of chemo, an assortment of clinical trials and holistic treatments. we tried it all, but in the end it just wasn't in the cards. Through it all, her friends, family, loved ones and blog followers is what kept her going, and for that I thank you. your comments and support made it easier for us to find the strength to get through this.

She jotted down the following quote in her diary "in three words I can sum up everything I've learned about life: It goes on" Robert Frost.

that exemplifies her spirit, and we should remember that as we recover from this terrible blow we suffered. she was a dynamic spirit, who cast a bright light, so we all have a very large void in our lives. But she would not want us to remember her with sadness, but instead only focus the thousands of hysterical and loving moments she brought to each of us.

thank you again for your support, her adoring, and loving husband Paul.

I'm sorry.

Who's your Super Hero?

May Heat

We had the heat on today! It was sho chilly in my house. It didn't stay on for long. I hope it warms up.


I just woke up with the good old list in my head. It's nice that my list has good things on it. It's getting longer and longer as each day passes.
Mich you are in for a treat! I can't wait to show you my sdorable scary blazer I am returning. I think I may make you do it. It's embaressing that I even ordered it! Online shopping can bring color blindness!

Started the simmulation yesterday for radiaiton to my upper back tumors. I wasn't aware of the milogram. They did another one on me at 11 a.m.  I had to lye flat on a uncomfortable stretcher for house out in the hall. I think that moth on the round bright light is dead. It didn't move while I was visiting. Wait a second, I didn't move either.

Fartman, you will enjoy this story!
I did and always try to make light of my situations. While I was in the room getting turned up & down I did something funny. I Farted! Close your eyes for this one to visual. The fellow was just finishing up and looking at the xray screen at my spine. He was close enough to understand what that noise was. I couldn't blame it on sneaker rubber or my chair! It was me!
I am always curious. Sometimes I want to know everything about what they are doing. Most times, I don't. Lickety split, get it over with. Yesterday, I was asking a million questions. I have had this procedure before. I was nervous and annoyed that I wasn't given any information on my day. That's another long blog entry. I will have to throw some people under the bus for that one.

Control. I wish I had more of it.  Good control. Control over my body, health is a big one. I can't stand when someone else is driving my car. DRives me nutso! Food shopping, shopping in general. Clothes, not so much. Buy me anything pretty. I need to get everything on my list. If it's not right, I am so annoyed. I can go on. I will stop now.

Here's another story. I got beat up by a little kid in the bagel store a few weeks ago. He was growling at me and pushing me. He said her was the HULK. I giggled and told him I was Iron Man. This made him smile and mad. Iron Man is a boy and you are a girl. You can't be a super hero. I was asked what color Iron Man was and his little face lit up when he realized I knew my comics. Then I mentioned Wonderwomen and he lost it. HULK was attacking me! His dad laughed and ordered him a spiderman cookie! Super heroes are back. Which one would you be???

I have these beautiful ideas for my home, decorating. The other day I went insane over a house magazine that I just got in the mail. My foyer and living room was in it! The same wall colors. My rug that I have been obsessing over too. Sometimes I wonder if I have good taste for decorating spaces. I do get great compliments. Are they fake. NO WAY! I just got the nicest pat on the back....owe tumor.
I have great taste. Exspensive, great.  Rug...........part of my list.

Bandit dog is limping again. She's our little one. If I take her to the vet, they say the same thing. Give her time. Don't let her jump from anything.  My mom, Paul and I tried carrying her around to help her. She needs to walk it off. The vet doesn't do anything but slap me with a bill. I am tired of bills, even from the dogs.

Have a fun Wednesday!
All my best
Sincerely
Love
Hugs and Kisses
Michelle

Viola!

GRRR Today!

Walking into the hospital I was determined to get out of pain. I would of went to urgent care if the doctor didn't do anything for me. I said to myself and to him, What will make Michelle happy today? Get me out of pain and a handicap sticker for my car.  I couldn't even sit in the car driving into the city. My back! GRRR!

I am not out of pain yet. But, I did get him to give me a nerve block and a shot of steroid/cortisone in my spine. Ouch.  He said he was proud of me because I use to cry and beg to be knocked out for this procedure. Today I got on the table (slowly, like a little old lady) and took deep breathes. I drooled all over the un-soft blue pillow. Squeezed his hand and viola (mom that's for you!) it was over. Felt the nerve twitch and that was a great sign that he got it. Hoping to be out of pain for at least 2 months.

Doesn't matter. I am going to do more radiation and surgery. Games begin on Monday!

Get ready for my happy out of pain blogs. I am hoping to get some sleep tonight. Paul too! He got a flight home this morning and looks so tired after the long day we had.

Pillows!

Good evening, morning...what time is it???

I don't even know what to do with myself right now.  I am lying in bed, which is the worst because I only feel the pain more.  My back is so bad that I can't even catch my breathe. My hands are completely numb from rubbing this lydocaine cream into my lower back, the spots that I can reach. Shooting nerves up and down my spine and now into my lower back, cute butt and legs. I can tolerate a ton, not this. I gave in to the pain pill gods and hoping they kick in soon. I need relief from this. Every movement hurts. I look like I am being eaten by my bed pillows. Not even kidding you, I must have 10 surrounding me. Rolling around in my sleep or moving makes me jump up. You should check out my adorable wedge pillow! Highlight of my evening.

When my brother stayed with me, I loved that he would listen to meditation to sleep. It was very peaceful. Better than watching t.v.  I need to do this. He is a smart boy!

I am begging my doctors tomorrow to help me. I am seeing them to sign consent for another radiation and nerve block. I am not even sure what's going on.  Going with the flow on this one.

Today was a nice day. I saw my adorable cousin Mary Margaret. It was wonderful catching up with her. She came over and we had a nice time hanging with the doggies in my house.

Exciting to see again. My vision is great! What a difference. This I am grateful for. Patience and good healing on my lovely blue eyes.

Please send a big hug to my friend Frank. He is struggling with eating. He did get some good news this week from the doctors. We are very happy Frank.


Back to my wall of pillows and sleep ( not sheep!)

Doc's in a BOX!

Doctors in a BOX


A few weeks ago my Oncologist suggested that I send a piece of frozen tumor to a place in Boston for some testing. Just like the Wiesenthal clinic.  Knowing that chemotherapy hasn't helped and radiating the same area over & over is not  the greatest, I decided to give it a shot. Can't hurt and I had the little sucker floating around the great walls of Mskcc. 
They test it against chemotherapy cocktails, drugs and a mixture to get some sort of result in fighting, killing, shrinking or even to keep them stable in my body. 
My results......sit down for this one!  ZERO! Nothing would or can help me right now. ZERO!  
Out of 236 mutations.....ZERO! I would like to say I am surprised, but no I am not! 
I just need time. Time will go by and some day soon they will find something to help. 

This week I was privileged to have a room full of amazing doctors stare at me in a small closet like room to go over their suggestions. More radiation, nerve blocks or my favorite back surgery.

My bone scan came back great. It has not metastasised anywhere else. This is great news. The ones that I have higher in my back and lover in the T9 are getting bigger and need to be adressed pronto. They are pushing into my spinal canal. Not a good thing.

My liver, lungs, pancreas & pelvis seem stable. I can't ask for more than that. 

Thinking I was going to try a new clinical trail called Mobic, I had to taper down from my steroids. I could not do the trial and be on them. It was wonderful! My puffy cheeks looked less squirrel like and I was starting to feel better. HOW can this be...what would it feel like to not take medication daily!?? Am I normal now???? NO, I wouldn't be, but close! I've excepted that I am a little wacky! I like it! 
Then the best thing in the world happened. My Brain swelled, again! I was walking down the street in my beautiful nude colored pumps when I lost all feeling in my left leg. First thought, Ah crap I broke my heel. I leaned a against a rough brick dirty wall (fabulous)  to discover that I didn't. I just couldn't walk and had no feeling in my body. Seizure, stroke...broken heel. Imagine a broken heel? What a disaster. 
I felt better after a few minutes and didn't even think about it until it happened again the next day. 
Then 3 days later I woke with another painful headache, vomiting and pure exhaustion. 
These episodes happened 5 times. 

I went into the hospital last Wednesday to have my cataract's fixed and a lens replacement in my right eye. Horrible damage from 3-4 doses of radiation that blinded me.  I was so happy knowing that I could see again very soon. Of course the anesthesia was a thought in my little brain. What damage am I doing with swelling?? It did something. Paul and I walked in the door and as I climbed the stairs in our home I lost feeling in both my legs. This time he was a witness. I couldn't lift my left leg to clear the step. I dragged it up. Banging it against the soft carpet, unable to feel a thing. I didn't get upset, I was way to hungry and tired. 
Brain swelling & now I am back on the steroids and looking like that hungry little goat at the zoo looking for the quarter hand food you get from that little bubble gum machine filled with whitish pellets. Poor little goats. I understand your puffiness. 

Surgery on my back with radiation plaques is the thing I am thinking about. It has to be done soon and I need a few days to really think things through. 

Oh JEEZ! I can't do this right now. I just heard a fast buzzing bug fly past my head! It's because my computer light is attracting something in my room. It's that time of year. Lady bugs, big yellow bees and stink bugs flock to the sunshine on the windows and house. GO TO BED you little sinkers. Now I will be in bed with blanket over my head hoping they don't crawl into my ears or nose! Yuck! 

Getting my garden ready. I had my friend Elizabeth over today to plan it out. This is so exciting for me!  We have a great veggie love thing going. EARL'S GARDENS! She has a blog, so google it. Actually, she's one of my freinds. Scroll through and find her green thumb. 
It will be  filled with the love of fresh  string beans, kale, radishes, carrots, zucchini, and more. 

Wishing everyone a wonderful Spring. Isn't nature amazing. I think of flowers and my friend Elsa somes to mind all the time. She passed away and had the most beautiflul love for flowers. I miss you. 

I am thinking about brining the beeper back in style! I think I want to start a support group for anyone that wakes up after 3 a.m. and can't sleep. We can meet and have meditaion and decaf tea. Just send me a page and we will find a nice quiet place. I am not kidding! There is nothing to do from 3-7! Nothing! 

Off to find the bug and sleep.  Wait.......AHHAHA I found him! Wow he's fast and loud! Sorry everyone...he went to toilet heaven. I am not throwing him out the front door tonght. I don't lnow if I'd make it back up the stairs! I need one of those electric chairs for my staircase.

Ok...thought of the day. Is it aweful for me to ask for a handicap sticker?? I'm 34 & drive a convertable. Hmmm.  I can't walk! How bad does that look if I roll into a blue spot and someone worse needs it. Give me the truth people! 

Goodnight & Love to all

Spring 2013...and more snow?

Yesterday I finished 5 Radiation treatments to my arm. We zapped the tumor that has been bothering me. It hurts more now than  it has over the past few weeks. It's because it's in the bone. It's swelling and has no where to go. Tumors/legions that are in the soft tissue swell and they aren't as painful. For me anyway. I am also using my arm which doesn't help. 

Thank you Paul,Wayne, Mary & my support team for getting me through another fun city Radiation week. Boy, we have been through many adventures! 

I will now wait patiently for some relief.  This pain is aggravating. 

Spring? It was snowing a few minutes ago here in N.Y. 
I do remember having a beautiful Easter outside in the sunshine a few years ago. I am hoping for another beautiful day. We are hosting Easter Sunday and I am up to 18 family members! Don't worry I am asking for help. Paul and I want to enjoy the day and me fussing over dishes is a pain. I know that he is happier when I ask for help. 
He already does the dishes, laundry...and I love when I see him sweeping! I think I have him trained. Is that possible? I don't want to fake pain...but, this is wonderful. 

I wanted to post a great picture of these stunning flowers Paul brought home for me. He picks them out himself at the florist. I think that is so much more special and sweet.  

Off to get a million things done. 

I need to put the Jelly Beans down. Every flavor is amazing. 

Have a great Thursday

It's GLOW TIME again!

Thank goodness my computer and cell phone automatically adjust to day light savings time. I just looked over at the clock and was totally confused. Come to think about it, who does that in cyber world? I would say it's enabling me to be lazy! 

This is going to be a quick blog entry.

My left arm (bone) has been giving me grief. I finally found out why I am in so much pain. I have a tumor in my arm! Can you believe that one? It feels like it's broken. 

I have to patiently wait while the Doctors figure out another plan of attack. When I left the hospital on Thursday I was all set up for Radiation. They started the process and simulation. I unhappily received 4 more tattoos to my left shoulder/arm. They gave me a schedule for treatment along with an appointment for a bone scan. I decided to try a clinical trial instead of chemotherapy. I had a plan Friday. Things always change. The Doctors are talking and that's alright with me. They don't ignore me, they know better! 
I am sort of on hold. Tomorrow morning I will find out my plan. Doing the radiation may disqualify me from the trial. We have to make sure this is done the right way. 

My goal is to get out of pain. 

Oh...Good news. The Pazopanib may have helped me. I am off the drug because of my high liver enzymes. But, my recent scans showed shrinking and stable tumors in my liver, lungs and pancreas. The tumors on my vertebrae and arm did grow. The news that my organs have no growth is great. 

I will let you know what I decided.  
How much Radiation have I had and why am I not a walking GLOW stick? 

The Shuffle

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

That was the short version. Here are some details.

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

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

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

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

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

Brain's & Kisses

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

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

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

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

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

The Brain! Abby-Normal! 

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

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

Love Hugs Kisses 
Michelle

Pazopanib kicks off the New Year!

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

Checkup & Scan 

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

What did they find this month? Let's take a guess. Why is it that I don't get upset anymore? Am I  that numb to  my cancer spreading? I  always say, " It could be worse". Then I think....Umm it's not that great is it?!!! 

I do have some more tiny tumors in the liver. A few more spots in my lungs and they think in my Pancreas. We are going to watch that one very closely. This year I have newness in my Pancreas. Great! That's all I can say about that. 

The tumor on the vertebrae ( T(9) , rib cage got bigger and has been hurting so much. I knew that one grew, I could feel it. I tried another ( 3 times a charm!) Nerve Block  last week. The tumor is just loving my nerve. If I don't get relief they asked me about having a pain pump. Has anyone had one? I believe surgery is not an optiion because it's close to the spine. The other spinal tumors are the same, no growth.  

What's next??? 

My Oncologist recommended a drug called Pazopanib. I take pills at night before I go to bed.  Tiredness in one of the side affects. It's nice to sleep and not feel the exhaustion during the day. I have had so much energy. High blood pressure is another. I take it everyday and so far I am still my normal low. The other day I felt uncomfortable pains in my fingers and feet. My fingernails are red and feel bruised. It's like walking on blisters. Oh...and I feel like I am going to throw up every day! Mouth sores are fantastic!  Side effects are awesome. 

Paul and I  went to Commack, MSKCC for blood work today. They need to keep and eye on my liver. We don't want anymore damage to my poor body.

More Doctors next week to go over more scans. 

Hairy Details

My Hair is growing so fast. It's baby soft and curly! I have been playing around with it and trying to make it spike! I got tired of the wigs and now just wear hats. I am starting to look like myself again. It's nice to get back into the groove of living a normal life. 

I just wish I had normal people around me! Wait, that would be boring. I do love my unique blend of friends that cheer me on. 

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

I am happy that there is a drug for me to try and let's hope it works.

Have a Happy & Healthy New Year! 

After the Storm....

Long Island Michelle made it through Hurricane Sandy!

I wasn't preparing for the storm. I was getting ready for my Radiation treatment. I was scheduled for Tuesday and knew it was going to be cancelled. I just wanted to get it stared and over with. Instead of stocking up on water and gas, I needed Gatorade, soup and crackers! 

I counted and was trying to figure out how many single treatments over the course of my hospital career  I have had. Over 90! I am like a glowing radiating flashlight. No! It doesn't work that way or stay in your body. After the beam is casted from the machine, it's over. I don't walk around like a light bulb. That may be my super hero....Radia-Gal! 

Wednesday, I went in and found out  that I would be doing 5 treatments in a row instead of every other day that was planned.  GREAT!  I would be done sooner and get the vomiting and every other belly issue completed quicker. Then the Mayor applied the storm rule. We couldn't get over the bridges without 3 or more people. The tunnels were under or should I say filled with water. Then the GAS issue. The lines to fill your car or gas can was ridiculous!  

Thursday I felt sick. Friday, I pushed through the treatment and just wanted to get home and hide in bed. The weekend I was so tired and still really am. Monday and Tuesday went by too slow. I had a lot of pain during treatment and into the night.  

I am feeling good right now. The nausea is getting to me.  Staying hydrated. My stomach hurts and  I don't have not much of an appetite. I make myself eat.  

What else? It's been very boring. We got snow yesterday. Lost power again last night.  The weather has been very interesting. 

If anyone wants to send donations to help here, it would be great. People need clothes and blankets. Many parts of Long Island, N.y. and  N.J. still don't have power. Homes are either gone or freezing. Look online to find a place to send items you are not using. Every bit is helpful. 

Peace & Love to all 

I'm looking at my two dogs. They need a walk and I need to stretch my legs. They can walk me!
That's what I'll do after my fascinating update.

Monday I had my second part of this fabulous round of radiation....I had the simulation. Started my day with oatmeal, headed into the city and got doped up on a lovely sedative to help me relax during the scans. They wanted me calm and relaxed. I was wearing a belt that fit under my rib cage. It fills with air and tightens. I take very shallow breaths. I will be wearing this for thirty minutes for five treatments. I do my yoga breathing and think happy beach, sandy feet thoughts. It's uncomfortable and makes my belly area sore. Only five, I can do it. Then I received five more tattoos and a warm foam body mask. Oh the joy of it all! Is it sad that all of the technicians and nurses know me by name? They don't even ask my birthdate anymore!

I don't start the radiation to my happy liver for another two weeks. Maybe sooner if they change my schedule.

I have a friends wedding coming up. I have so much to look forward too. It's nice to have happy plans. I also love to get dressed up and wear beautiful shoes!

Family is good. I made my nephews Thomas the train costume! It's fantastic. I'll post a picture.
I'm really crafty. My friend is having a murder mystery night, Victorian theme. I'm making the hoop skirts. This will be fun to design and sew.

I guess you can say....I'm back. Nothing is keeping me down. I'm feeling like myself again and I'm happy.
Thanks again for the great comments

Side note:   Fartman...you need to blog more! I want to leave posts for you!
                    Jessica....Blooka! You will always be my one armed friend. 
                     Some friends are starting chemotherapy and please say a nice peaceful prayer for them.          Kelly and Erica, you're always in my thoughts.

Liver Love

It's not whether you get knocked down, it's whether you get up 

~Vince Lombardi

Anyone awake at 3 in the morning? Give me a call. I wake up at the same time every night and have such a hard time falling back asleep. I think we should start a nighttime call center. It could play soothing music or read a book until you fall asleep. 

I did eight weeks of the trial drug. I saw my oncologist the day I quit. My liver tumor that was shrinking, got a tad bigger during this time period. I was aware and worried about the tumor getting bigger. I didn't want my options for treatment or surgery to be a problem. Quiting the trial was the easiest decision to make. The drugs didn't make me feel that good. But, what is funny is that I had things going on that stopped and started up again a week or two after I quit.  The chemotherapy had pushed me into early menopause. I am 34 and having HOT flashes all day long. I didn't even realize that the trial drugs had paused the midnight pajama change. Now I am back to turning red and removing layers of clothing. Part of the reason I stopped wearing  wigs. 

Liver Love :)

I got the phone call today  from Dr. Radiation's nurse and wasn't prepared for my treatment to happen so quick. I was still making sure the insurance company gave me pre-approval.  I start another radiation treatment in two days and this time it will take three weeks to a month from start to finish.  It's similar to the one I did on my vertebrae tumors. Image guided radiation. It's called something else. I am upstairs and the paperwork is downstairs. I will gather the information and get it out to everyone. It's very interesting.   I am going to wing it and give you the quick version of what I know they are doing. Mind you that I listen, soak it in, read about it and then forget. 

This Thursday they are going to give me some happy gas and a pill to make me calm and forgetful. They will numb an area and guide a needle with three gold balls into my liver tumor. 

Then in 3-5 days scanners will MRI my liver and will see if the balls stayed in place or floated around. I will then be fitted for a body mask, another set of tattoos ans some more scans.  For the record these will be my third body tattooing. I already have black and green ones all over my chest and belly. They are like beauty marks that remind me of all the fun I go through!  A few days after that I will be starting 5  Radiation treatments. Since it will be at a high dose, It will be every other day.  

There are side effects and it's really how my body responds. The tumor is pushing against my stomach  and the Radiation blasts will be hitting it. I may be sick for a day, week or month. I know taking the medication and watching my diet will help me get through it like a champ. I also gained 20 something pounds and would like to wear pants that don't have an elastic waistband! 

Has anyone done Radiation on the liver or Organ? Advice?? 

I want everyone to know that I am doing good. Some people think my humor is a coping mechanism. I am actually pretty funny! I just can't help but laugh my way through this junky time. I had the depression and anxiety hit. It wasn't fun for me or anyone around me. I still feel horribly guilty at the way I spoke to my husband, family and friends.  Michelle just wasn't Michelle.  I was an  angry girl! I look back on the amount of drugs in my system. It's gross thinking that Dr's just want you to take a pill for every symptom. I am down to 3 pills a day! I was on 6-10 at one point in my cancer career. 

Chat more soon. Biggest hugs to everyone.

Thank you for your support & love.

This is my little dog Bandit (nickname Boo). I wanted and needed to get her groomed this week. I have a buzzer and figured I could do it myself. Well, it wasn't that bad. When she walks away from you she has a buge chunk of hair mising. It's very funny.

It's my 8th week on the, "I have no idea what I am putting in my body drug trial".  I love that everyone around me thimks it's so easy to take pills and injections,you  have no idea what it is. The exhaustion has started again. Yesterday and today I have felt sicker than ever. Delirious and unstable. Sick to my stomach. I have felt an odd change. I can hear when I talk that I can't form a sentence. And you wonder why I'm depressed!
I will continue taking these unknown pills and smile  at everyone. I really just want to run. I have my gut telling me this is complete bullshit. But, hey everyone else is convinced.

My Dad and I park the car in the city and scout (stalk) the food trucks. My favorite so far has been the lobster truck. Mexican is awesome.....yummy tacos. Pizza, hot dogs, Greek. Italian pasta truck. It's amazing. You wait a a little while and Mr Softee ( best ice cream cones) or the yogurt trucks that have fresh fruit.

Tips!! Please.
My hair is growing and and I have no idea what to do with it. Let's find a picture to show you . I will post one. What kind of gel should I use. I look like a boy!


Positive thinking. I am manifesting good energy. I have good people around me that make me smile. My father told me to stop thinking about the past. I did the chemotherapy, months of that nonsense. Radiation sucked the life out of me. Now I am doing more that just I feel I have missed out on so much.
But, what did I miss out on.

My Love to do soon List: a few silly things

1. Coney Island trip
2 Met Game
3 Dance again
4. A montauk week (Paul and I use to go every summer)
5. Take my dogs for more walks

I am going to get better and that is really what my list should be.

Having a Young Frankenstein movie night if anyone wants to pop over. You have to dress like Egor!

Signing onto my blog I saw that it says "my fabulous journey". What the heck was I thinking when I wrote that. How about, " Not so Fabulous" Then again I know some miserable humans that I,

     

A. keep my disitance from      

B. would never want their life.  

I guess I have no choice in living this one out. I still laugh at something everday. That's really nice. I"ll say semi-fabulous. Because I look around at the miserable and boy are they not smiling. I still am!

NEWS BRIEF ON HEALTH ( boring!)

I have an MRI this week. I have been feeling very off when it comes to collecting my thoughts and getting words out right. I attribute most of this to the medication. I have a hard time doing a few things at the same time, something that was never a problem. I would give you a few example's... way too embarressing. I decided to get a scan to check things out.

Liver, I hope is still shrinking from the last procedure. That was fabulous news.

Lung is clear! My back is killing me! 

Thursday Paul and I went to Mskcc to see the back Doctor. I had the nerve block done and wanted to visit other options to dull some of this horrible pain without pain medicine. 

At the elevator leaving the hospital a sharp pain started at the tumor site in my back shoulder area, spread around under my armpit into my breast and ribcage. It felt like someone threw gasoline on me. I know what radiation burn feels like.  Like a fire spreading across my left side. I  have been unlucky enough to have it a few times on my face. To me it's like a feeling deep in the body. This burn brought out screams of torture. 

Paul wisked me away to Urgent Care. Thankfully we were steps away. I couldn't sit, stand...breathe. 

They pumped me with Pain relief in an Iv. Thanks for the bruised arms little nurse who wears glasses and I swear they are all blind. Never can get it in right!! 

I stayed the night for pain management. Loved my roomate. Always the same. I never sleep because of the beeping and oxygen tanks constently falling every five minutes. Not luck with roomates either.

Pain is throbbing in my back 24/7.  I guess your body gets use to it.  I am exhausted from it and just live like this everyday. I keep going. If you keep your brian busy, you don't think about it.  What did the nurse call me.....stage 4 metathasis cancer patient. Great name stamp to have. How about...your going to die and we can't help you. Perfect, feels great. 

I have been feeling this awful uncomfortable pain since November. Nothing seems to relieve it.

REQUEST! Please someone just help me with laundry and the dishes! I have to wait until maybe 10 a.m. for it to subside. Then at night....oh you'd love my bedtime getup. I have a wedge pillow! Helps with swelling too. My face and eyes are not as puffy!  I cut back on steroids too! Found a great I eye cream.  I will share the product if you do my laundry, help me make my bed up in the morning.

Everyone promises to help you. Then the phone calls stop and it's like crickets.

MY COMMUTE

Paul and Wayne ( dad) drive me to the city Mon-Fri. This trip everyday for weeks is not new for us.  Robert has this Friday...a good brother. They are all good. 

Radiation that I did in 2007 was the same. Everyday! This is for a drug clinical trial. Don't even bother asking me what  it's for. I begged, cried not to do it. I have no idea what I am putting in my body. Three pills and a shot in the belly. The pills I call my veggies, carrot, broccoli and lima beans. Paul wants me alive. 

What would you do to stay alive??? 

I have been feeling good. Energy is great. 

I am going to start dancing again. Doing the things I love to do. Setting up my sewing room. Pushing through the pain in my hands. 

Took a good look around me. Thankful for many things.  Yes, things are difficult. I have more on my shoulders that many. 

FOR JESSICA!

Jessica! I have something for you. Ok, maybe I don't. I had a GC and I am almost postitive that someone, gee who???? took it. Let's just say...it was around 50! 

HAIR!

Curly, light brown (Blonde was from highlighting) and funny....I'm Gray!! It's awesome!

I am 100 percent naturally beautiful!

Peace 

I wasn't going to write on my blog. I decided that I should because I need some support and love from my friends in my blogger world. I also wanted to check up on all of you. I realized that I'm allowed to complain. I need to complain and I don't care. I think everyone gets tired of hearing about it. My problem is that it's been going on for way too long. I have little to talk about. Here's my update, my complaint. I'm in the city all week trying a clinical trial. They accepted me in on Monday and I have to be here everyday at different times. I can commute the hour train ride back and forth everyday from home. After this week, I'm doing that. I'm lucky enough that my brother in law has an apartment that I can stay in. I'm grateful for their support and help. It's blocks from the clinic. It's perfect. Problem....I'm totally uncomfortable. I know it's only been 3 days. It's just not home. It's not my bed and I can't fall asleep. Every night it's 2-3 am. I want to go to the beach. I want, I want. That's all I think in my head. I want to go home. I want to be happy & healthy. I want to not feel depressed and angry. I'm very angry. I'm angry at not making my own decisions. I want to have surgery to fix my head and my back and my liver! It's my body and I'm in pain. All day! I barely eat. I just haven't food shopped. I'm so embarrassed by my looks, I don't want to go out. Take note....it's 3:07. I just had tomato soup and half of an almost rotten avocado. Great midnight snack! Actually, it was yummy. I feel sick though. I'm waiting for my pain patches to kick in so I can sleep. I'm scared to take sleeping pills when I'm alone. Even the pain meds make me so wacky. I can't stop crying. My eyes are two big puffs. I lost my hat and can't hide under it. I feel like everyone is glaring at me. My wig is hot and itchy. I'm just not a happy girl right now. My birthday is this Friday the 13th. All I want is to curl up in my bed, cry and sleep. That's it. No balloons, cake or big deal. This is coming from a girl who loved her birthday. I'm miserable Michelle. Just went through twenty tissues. Now I'm tired. Goodnight.

My liver tumor SHRUNK!

Hated the last few procedures. They took so much energy from me. I really had a ton of pain. Felt like I was going backwards. It worked  and I hope it conntinues to shrink. This is very good news. If you look you can see the tumor in my liver, it's  the darker circle towards the top. It sit's above my stomach (white blob in middle).  Amazing! I will get a scan in two months and we will watch it shrink up! Keep dying little tumor! I am feeling so much better and getting energy back. Working out again to get my muscles stronger. Medicine, hasn't changed. Bummer. Summer is here and I am so happy! Doing everything I can to make it a good one. I miss the beach, sand...sun!

one very long year

It was a year ago that I started the decision making and jumping into a long sad summer of daily radiation treatments to the right side of my face. The usual began, dry mouth, trismus, and the symptom that has lingered in my system for months....exhaustion.From the treatment and also medication. Headaches started and more back pain. That's when the fun began. I am not talking about catching up on reality shows. I did enjoy flipping through mindless tv and then switching over to CNN when Paul came home! 




I did the IGR treatment on my back in December. Continued to be uncomfortble for months. Subsided and started back up in march-ish. 
Dealing with that and my lovely weight gain. Joy of  stretch pants! I started the nasty chemotherapy. The second one made me think of quiting. Paul had to take me to the hospital after every treatment. The third chemo, I pushed myself. I knew I needed to just keep trying.  Looking back with regret was not an option. I was already so weak and tired. The bed was my only friend. My medication list was getting bigger. Steroids galore! 
After the second treatment, my adorable husband got me a buzzer and we did the head shave. I couldn't look at my hair fall out anymore. It was making me sad. I have video...I will post it. 


And then it happened again....my pains got worse. I slept way too much and felt like the chemo was destroying me. My scan showed stabilization. But, not in the liver. My back tumors exploded (not literally) with pain again. More lydocaine patches. The best is I can never sleep. I wake up with these sticky patches stuck in the strangest places. Once one crept up to my ear, stuck to my shirt! I had no ides what it was. Felt like a slimy slug, Gross! 


That funny Gut feeling floated around me until I asked for more testing. My body didn't feel right. I don't think I blogged about this. It's somewhat new. Tumors have been camped out in my lungs and liver. Add a few blood clots. I had a lovely scare from being on blood thinners that gave me the brain hemorrhage. Back in the hospital! They put in a filter to collect the clots. That was super uncomfortable. No sedation. A metal piece being pushed down into your body. I cringe at the trauma and tears! The tumor in my lung has a little blood clot buddy too. 


A few weeks later I had a liver biopsy done to determine if the large tumor in my liver was cancer or just something trying to scare me.  I begged for a local and to be knocked out. I can't handle these little surgeries. I need an IV pole and some medication love. Not a painful procedure, I am a big baby sometimes. Oh wait, maybe I am like everyone else and can't stand being poked all the time. My body, my rules. 11 years of this crap, I get a say! 
It came back as the same spindle cell sarcoma. I decided (and everyone else. I feel like I don't get a say anymore) to do a Hepatic Embolization. 

Embolization for Liver Cancer

The hepatic artery delivers oxygen-rich blood from the heart to the liver. Tumors need the oxygen and nutrients supplied by blood to grow. Embolization stops blood from flowing to the tumor by injecting substances that plug the hepatic artery. Meanwhile, the healthy liver cells continue to get oxygen and nutrients from the portal vein, which brings blood to the liver from the intestines. In most cases, the procedure only stops the blood flow temporarily, but it can sometimes block the hepatic artery permanently.

Like ablation, embolization is a good option for certain tumors that cannot be removed by surgery, especially if the cancer has not spread to other parts of the body.

• Hepatic artery embolization - The doctor threads a catheter (thin, flexible tube) into an artery in the inner thigh and up into the hepatic artery. When the catheter reaches the liver, the doctor injects small particles to plug the artery.

I am now spending another month back and forth to Docs. Trying to determine a plan. No more shots! NO more medicine! No more stupid clinical trials that don't help me.

I want this tumor out of my liver. I will take weeks of healing and pain. I have already endured so much. Fartman....what did you do to your liver. HELP ME figure this out. I need opinions. 

As the Chemotherapy was coming to an end (my choice), Paul (did everything) and I moved back into our  beautiful home we renovated. A whole year! I can't stand the look of boxes. I don't even have energy to open them! 

I hope everyone is doing well.....good...fantastic. If you have had and still deal with the crummy hard days. Just push along. One hour may be bright. I think that's all I need for now. Just an hour or two of no exhaustion. That's when my depression, anxiety and sadness disappear. Then the tears start to flow all over again. I am really feeling better as I detox this chemo out. I am also  trying to let more people into my life. I push and ignore. I get self conscious and scared. I learned that we all have something going on. I am over talking about it! 

love lots bloggers. 

I couldn't of gone through any of this without Paul, my love. Take care of that TOE!

Chemotherapy, Great wigs and A Puffy Smile!

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!