SPOHNC

SUPPORTING PEOPLE WITH ORAL HEAD AND NECK CANCER

www.spohnc.org


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

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

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

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

Enjoy your day

Happy Almost

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

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

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

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

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

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

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

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

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

The Mask

          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.