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! 

Puff Girl Flys Home

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

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!

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