Friday, October 28, 2011

Doctor Bully & Exhaustion

I don't think so Doc!

We've been sticking up for ourselves since we were little, getting pushed around on the play ground. Why do things change as we get older? I am sitting here blogging looking at an outpatient survey that I got in the mail from the hospital. I have filled them out before, honestly and returned them. 
Today is a little different.  

Today I made the phone call to gather my troops. I did what all patients MUST do when they feel that things are just not right. I don't feel good!  My body is telling me that something is wrong. Yes, I may be NED. That's fantastic....but, I don't feel right.  It may be that I have been pumped with more drugs to balance me out. My poor body and my brain is so tired. 
What's even better, the hospital gave me the wrong medication dosage to take daily! You have to love the local ER!

Was the last head-pain-trauma-ache from lack of steroids or brain swelling?  I want an answer. I want an MRI.  I am not waiting until November 14th to see the Dr. I will get this done sooner. This is my life, I am NED and will stay NED! 

Why the heck did my Neurologist put me on anti-headache migraine meds (when I clearly stated NO). Why did I let him?? Because, now when I said I don't want to be on them.... I have to wait. I may get a seizure. What? I have never had a seizure! Why the heck would I get one now! What is going on! I am a Fu**in guinea pig to some of these doctors! 

Today an email went out to my Neurosurgeon, My Head and Neck Surgeon, Radiologist...maybe even my Dentist. I want everyone to figure me out! Get me a scan. Find the problem. I will not sit around and wait for another in the middle of the night attack. 

I am already seeing my vision getting know what happens next. 

Be your own Advocate! Speak your mind to your doctors. Don't be scared. Tell them how you feel and if one can't help you....find one that will. 

Now my anger has turned to sobbing tears. I am letting this take over my life again. I thought getting passed this summer would be  great. I started to dance again. I got my eyebrows re-tattooed. Yes, I lost one during radiation a few years ago. It was so traumatic for me. 28 years old and one eyebrow. Sounds silly, but you really don't understand that our face says it all. For a head and Neck Patient, Survivor, we struggle with our appearance. Scars are more visible than those on a breast or belly. I have them running down both sides of my ears, neck. My port scar, the 10 inch beauty on my stomach. Beautiful reminders....battle wounds! Red burn looking marks on my forehead and eye (bloodshot) from treatment. Bumps, pins and screws sticking out from surgery. 
I'm crying because yet again I am at a standstill. I am cancer free and still weighed down by this horrible disease. It just lingers in the air. 

I don't want to be tired anymore. 

Tuesday, October 25, 2011

Eat a Banana

Another one....

I was so super excited yesterday leaving the Neurologist. I came home and started to blog about how happy I was that I was OFF the  crazy steroids. I was finally feeling like myself again. 

All good things come to an end....  

1:00 a.m.  
I woke up with yet another extreme headache. The same screaming kind, and I can't even move it hurts so much.  I tried the medicine the Doctor told me to take if I felt a bad headache coming on. But, this wasn't even close to a bad headache...this was worse.  Paul called the Doctor and after some time we agreed that I needed to go to the hospital. I just couldn't make the 45 minute trip to the city, to MSkcc. I went to Huntington Hospital instead. I don't even remember getting in the car. It was a quiet night in Emergency.  Within minutes they had me hooked up to an IV.  They gave me 10 mg of steroids, a little nausea med and happy morphine. I had relief almost instantly. They  also gave me a CT scan.  Then sent me home to sleep and to continue on steroids! 

It was a very long morning. I am feeling better, just exhausted. Back on steroids :(  I have to figure out what's going on with my brain. It's not happy and it's making me miserable. I can't keep having these silly head pains. They are so awful. 

P.s. My potassium is low. 

Wednesday, October 19, 2011

A Letter

Dear Everyone....but Cancer, 

I am so happy that I am almost off the steroids!  I am down to  taking 1mg a day. That's nothing compared to the 12mg I was taking  a day! 
I haven't been getting headaches. As much as I have been dying to get off these meds, I have been a little scared. 
I see the Neurologist next Monday. I will talk to him about a future plan.  Notice how "I " will be making decisions about my brain and the drugs I put into my body. I haven't been too happy being on all these drugs (even though they helped)  the past few months. 


A Doctor was at the  SPOHNC meeting talking to the group about Radiation treatment/side effects on head and neck patients. Most of what he was saying, I have experienced.  It was the recovery part that he spoke about that made me smile. Which is funny, because it's my third time doing radiation. I guess my brain just put up a wall and I forgot how uncomfortable it was. When your doctor tells you that you are doing six weeks of treatment, you don't add on the extra weeks for recovery. But, we should add it on. It's important to take our time to heal. 

I am still having issues with my mouth and it's been 2 months. My doctor told me to give it 2 weeks!  I'm just starting to get my taste buds back. At night my mouth is so dry and it's the complete opposite during the day.  I don't have any pain, just little twitches in the area where the nerve was radiated. My teeth are ultra sensitive and cold things are bothering me.  

Cancer Care

I went on Monday to the Long Island office to talk with a counselor.  I filled out a questioner and then sat with an Oncologist Social Worker for about an hour. She asked me a dozen questions. We talked about my diagnosis, the feelings I have against cancer and few other cancer questions.  She asked me at the end to do her a favor and to write a letter  to my cancer! WHAT! To tell my cancer how I feel. I had a big problem with this. At the time I wasn't sure why. 
I  realized driving home that this place wasn't for me. Maybe I needed to see a different social worker.  I believe that Cancer Care would of been great for me years ago when I  newly diagnosed. Not at this time, I am past the Cancer letter. I have been dealing with Cancer for way too long to take the time to write it a letter. Does it even have an address?  What is it like Santa?  Instead of Coal, you get radiation burn! 

I am not saying that it won't be right for anyone else. Please..... Go...try. You may find a connection and it can help you get through a rough patch. They have group sessions too. 

I hope everyone is having a wonderful week.

Peace and Love

Wednesday, October 12, 2011

Travel Blog

This is fun....I am travel blogging from my dermatologist office! I got sick of looking at my fifteen year old acne skin and called this morning for an emergency appointment.
Ok...let me tell you how to do it. I call a few days before the weekend and beg to see the doctor. I explain ( fib) that I'm in a wedding this weekend and totally broke out and need help! Always works! But, now when I see him I have to tell him the truth about the nasty steroids. He knows I don't usually look like this.

I will be waiting to hear back from my oncologist about the clinical trial. She is going to test my tumor ( a frozen lump that I have stored at the hospital) for this certain protein. She will present my case to the board and will call me in ten days. Which really means, I'll be stalking her in ten days. I left the room thinking...ugh aren't you running this trial?

I'm 33 doc, give a NED girl a chance!

I did some research and other hospitals are running the same trial. I am sending out emails to see if they started and if there's any room for a beautiful sarcoma free NED like me!

Tapering off the meeds. Maybe a clinical trial. Meeting a therapist from cancer care. Meeting tomorrow for SPOHNC. Hopefully clear skin soon. Feet are still numb :( oh, I get my massage today. Things are getting better, my body is getting stronger.

Thank you for all your emails, blogs and support. They mean a ton to open my computer and read so many wonderful words from people I don't know or have met once.

Hugs Ned

Monday, October 10, 2011

Vaccine for Sarcoma

Blogger Buddies

City again tomorrow....for something good.  I will let you know how things work out.
I am seeing one of my Oncologists  at Mskcc about a clinical trial that I really would like to be a Guinea pig for.

I am feeling better about being NED. It's wonderful to get great clean news from the doctor. I have this fear always floating around me. I usually get 3 months tops and then I am back on the operating table. Bummer :( Thinking positive.  Because, like most of you know and have posted/blogged back to me, we have to love the momemts of a clean scan and live everyday to the fullest.

I am throwing myself back into Ballroom Dancing and loving it.  Staying busy... decorating my new beautiful home. Enjoying this beautiful Fall weather.  And now that I am 10 pounds lighter, I got to shop for new clothes, pants!  That's fun!

Hugs, Peace and Love

Trivalent Vaccine for Sarcoma
MabVax Therapeutics is actively recruiting patients for a Phase 2 sarcoma vaccine trial who have recently been treated for metastatic sarcoma and whose status is “No Evidence of Disease” or NED. The patients in the study will be randomized to receive either a vaccine that is combined with an immune system stimulant or the immune system stimulant alone. The immune system stimulant is called OPT-821 and is an immunological booster. If the trivalent vaccine can stimulate the patient’s immune system to develop antibodies which recognize and target the GM2, GD2 and GM3 sugars that are over expressed on the surface of most sarcomas, then the patient’s antibodies could attack and kill any remaining sarcoma cells potentially preventing the recurrence of sarcoma. For more information about the trial, please visit the clinical trial overview.

Thursday, October 6, 2011



I had a  CLEAN SCAN !!!!!   

I was trying think about how to start this email. Getting the drum roll going. Maybe blow up some balloons (kristen knows I love them).  But, guys just want to hear the good news.

Last week my Radiologist informed me that after 6 long weeks of treatment on the nerve in my face looks great and so far clear of tumor. I go back in a few weeks to double check. 

Tuesday I had my Neck MRI in Commack at 8am.  Then Paul and I drove our  little butts into the city to see Dr B. He's my Head and Neck Surgeon (love him). Paul and I laughed because we was dressed liked a priest! OR could of been a Ninja. 
He was able to only look at the films because,  radiology didn't finish the report.  His words to me, "I am really surprised to see no findings of tumor anywhere on these films." I know we were all shocked. Those pesty lymph nodes in my neck went away. 

I haven't had a clean scan since 2007

You can now start calling me NED. NO EVIDENCE OF DISEASE! 

If all works as planned. I am trying to get on a clinical trial next week for Sarcoma. You need to be free of disease. This could be amazing. 

Why do I still have such a hard time believing that I could  ever be cured? I feel like I'm not that happy. Because I've heard this before. And, two months later I was prepping for Brain surgery. 

You can get wonderful Cancer free happy news and still feel like the loneliest girl in the world crawling up the mountain alone. I just feel like I'm allowed to take a quick brake on the hillside before the thunderstorm. I want this to last and I want my life back. And I know it won't. And this makes me sad. This is why I feel Lonely. I know many feel this way and I am not alone. 

It's just always there in my head, no matter where I go or what I do. Stupid Cancer and the fears. 

I started Ballroom Dancing again and even did a little show case kind of act at a restaurant. We got a round of applause. No toes were stepped on!  I had a blast. 

Goodnight sleeping chickens

I'm actually getting tired! 
Peace, love and remind yourself of what's important.