The Mask

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

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

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

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

Hugs Michelle

Advice

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

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

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

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

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

Lesson of the day: Start taking your own advice.

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


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

Shame on me

I am still fighting this never ending battle with cancer.

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

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

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

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

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

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

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

Spring has arrived

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

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

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

Happy May! Tulips make me smile.

Keep thinking about Elsa and her beautiful life with us.

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

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

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

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

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

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

Because, honeslty I am happy.