Friday, May 3, 2013

The Many Faces of Cancer - These Are All Mine

Well, I got two new Brain Tumors, I found out on April 30th after my MRI. The next day I was re-fitted for my face mask. I have to say it was very tight! I can't think of many worse things than being clamped to a table with a plastic mesh mask clamped to my poor old head. At least this time there wasn't a fly landing on my nose every two seconds. I go in on May 7th for my radio surgery. Again the worse part is being clamped to the table. The radiation dosen't hurt. I may get a headache, but it shouldn't be too bad.

This is the MRI of my spots. Funny, I also noticed on these MRI's that my nose is crooked. When they went in for my Pituitary surgery in 2011 the guy said he fixed my nose - to me it looks like he twisted it - It's all out of shape! Anyway you can see on the new MRI circled in blue, is a new tumor - in the old MRI it's just beginning  to show. Then I also have a new tumor on the top of the ol' noggin. I'm lucky that these are small and shouldn't pose a threat. The doctors say they're too small to make a difference, but I swear I can feel them affecting my balance. It's also hard to type correctly - though I'm on a lot of drugs and my eye is still fuzzy from that detached retina - so, it's hard to tell where one symptom ends and another begins! 

This is the machine I'll revisit next week.
These days, I'm more concerned about my stomach issues. My upper intestines are always aching - but I'm getting that checked out next week. I hope it can get sorted, because if I wasn't doubled over with pain all the time - I'd be feeling pretty good!  Aside from the nuggets in my brain - I don't have cancer anywhere else. I had a scare in the beginning of the month. I had a hard knot in my breast ( the one that's always acting out and wanting attention) It was deemed suspicious, and biopsied and thank God; it was just an annoying cyst!

So, I've been dealing with some stressful issues regarding Medicare. I will be dropped by my insurance and go into the medicare system starting June 1st. I've had 24 months of SS disabilities, so I automatically get transfered. It's so confusing!!!! I have to get supplemental coverage plans, and I have to try to find financial aid to pay for my $10,000.00 per month drug, Zelboraf. Apparently I have to go through some $2,989.00 Medicare doughnut hole then, start paying co-pays on drugs. My co-pay for Zelboraf would be $585 per month. So now I have to try to get on their financial plan to get either free drugs or very cut rate prices. I'm filling out so many forms! And I can't see! Everything is blurry and I have short-term memory loss! YIKES!!! I find it so stressful! 

I have gotten someone to guide me and hold my hand through this amazing foundation called the Patient Advocate Foundation! They're a god-send!!! If you need help with any aspect of being a patient they're there to help! They'll make phone calls for you and keep track of what your next step should be. They are just great! Go there and find help!! 
Patient Advocate Foundation or Call PAF's case management team at 1-800-532-5274 or email them at: 

I would like to thank all those people who have contributed to my medical fund and to those who have thrown benefits in the past, and to those who have future events planned. Thank you to WXDU in Durham and the Pinhook, Greg Cartwright, Joint D≠ , The Dirty Little Heaters, and of course my wonderful loving husband Dan Melchior. It was a fun night! It took me two days to get back to my normal strength. I over extended myself. Here are a few highlights of the night:

My sweet Hero!

Greg was kind enough to humor me in some wiggy fun!

Joint D≠

We, Dan and I, found ourselves in the vehicle line at McDonalds since the inside was locked but they were still serving the cars. I guess you had to be there; but everyone was laughing, including the people behind us (about 6 cars worth)! It was fun.

It was goofy, but we were hungry!

Now, don't judge me; but I have gotten into a bad habit of trying to look un-cancery, and have gone beyond the pale! I'm now addicted to wigs, fake eyebrows, fake contacts, glittery-sparkles and photoshop! What can I say! It's fun to play dress-up and pretend that I'm a Normal.

Below are my brown contacts that hide the scars on my eye and make my iris's sharper.

The wig I'm wearing is an $8.00 wig I ordered in February off of Amazon. It was made in China and had free shipping so I knew it would take a long time to arrive. But it was getting ridiculous! It took many many emails from Yvonne (? - a US configuration of her real name I'm sure) to figure out what happened to it. Seems it had arrived in Durham but the postal person couldn't read the address, so it had got sent all the way back to where it came from. Then they had to boat it over again. Somehow it smells like a Chinese grocery, but it'll air out with wear!

Then there are the purple contacts I got just for fun!! Yes I look crazy - but in most light you can't tell they're purple and they just look like an odd brown, and not like a zombie's eyes when they see something tasty.

Violet Eye's don't happen in nature - but they're purdy!

Who is this person?!!!!


I thought the Blue eyes would off set the druggie round face! But no I'm stuck with a druggie round face for awhile!

I don't know who I look like, but it's not me. Dan hates these blue contacts.

Maybe this is why! I look hypnotized! Notice in the background, how lucky I am to have been sent Edward Gorey's The Black Doll made by Necessaries Toy Foundation . Thank you Two-bit Johnny! I look like one of the FAWN Candy Girl dolls!

more blue.

I've been possessed! I'm just looking for ways of taking control of how I look I suppose.

Hello, I am Hans, your tour guide on this cruise of the Rhine - next sausage break 18.00 hours!
Caption by Dan

Now this is the real me! I got tired of my real hair. It changed into an 15 year old wire-haired dog, named Tuffy's hair! UGLY!!! MANGEY!!! It was out of control, and made me feel like my old next door neighbor Margie, who's perm didn't quite take. AWFUL!!! I was so bald in some places and not in others. What to do?!!  We are taking back control over here, and cancer will not make my choices for me when it comes to hair styles! So Dan cut my hair in to a Mohawk!

I love my Mohawk! It'll be much cooler for summer and under wigs. (I'm very susceptible to the sun because of my drug) I'll be using Lots of sunscreen!!!!
I thought I could look like Gary Panters WFMU cat! And if I make my Mohawk into a flat top, I could go for the look of Jimbo! RAW!

I also have to let you know, that I was the lucky person that got to model the new Jim Krewson Tee for Brian Turners show on WFMU!  Listen to Brian's archived shows!

Here's spiting in your purple eye cancer!!!!!

PS: Monday, May 6th, is Melanoma Awareness Day - so get out your 80's black clothes and dress like a goth! Oh! I got it wrong you are suppose to wear Orange to show support. I'll have to get some orange contacts!

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