Wednesday, June 26, 2013

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.


Monday, May 27, 2013

I'm sorry.

Tuesday, May 14, 2013

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


Thursday, May 9, 2013

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.


Wednesday, May 8, 2013

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!)




Friday, May 3, 2013

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

Thursday, March 21, 2013

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

Sunday, March 10, 2013

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? 

Tuesday, February 26, 2013

The Shuffle

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

That was the short version. Here are some details.

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

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

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

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

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

Sunday, February 10, 2013

Brain's & Kisses


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

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

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

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

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

The Brain! Abby-Normal! 

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

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

Love Hugs Kisses 
Michelle




Friday, February 1, 2013

Pazopanib kicks off the New Year!



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

Checkup & Scan 

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

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

What's next??? 

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

Hairy Details

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

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

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