Tuesday, October 29, 2013

That's Not Chicken!!!


Well, I just saw the image today, and my tumor is not a chicken breast! I was quite shocked by the size of the thing! I only imagined it was that size - (which in my book is quite large enough!) Then I get shown this! I didn't realise that it went on forever. It actually ends about 2 inches from my knee. It's pretty much in it's own compartment in between the quadriceps set of the Rectus Femoris and the Vastus Lateralis. The problem with doing surgery there, is, that there's no way to get clear margins without cutting into muscle. But that's not the main problem. I suppose there is no way of telling where in my body the next bit of cancer will be showing it's ugly face. There are likely a jillion cancer cells floating around just waiting to erupt - so there's no point in trying to cut this one out.You cut things out so they won't spread, and  I guess I'm past that point. I noticed that the doctors have taken up saying things about making the quality of my life better. They don't really talk about extending my life anymore. Humph!
Surgery on the tumor may become an option if the radiation doesn't work and the tumor keeps growing. But surgery would delay any upcoming chemotherapy. Yes! I said the dirty word! Chemotherapy! To me that's, "Something, I always never wanted!"
Somehow I've had it in my mind that as long as I didn't do radiation or have chemotherapy then I wasn't a true cancer person. I was special because I was doing all the front-running forms of immunotherapy!

I know I said this in my last blog but it's true! And it's my worst fear!
When people hear the word 'Cancer' the image that comes to mind is the frail bald crumbling person on chemotherapy and radiation doomed to death in what could be days.
I DO NOT WANT TO BE THAT PERSON!!!! I WILL NOT BE THAT PERSON!!!!!

Yesterday was my 9th day of radiation. I guess it hasn't been too bad. I was getting really tired from it and I've had to have naps afterwards. But the worst thing for me was, and is, the reaction to the steroids I'm taking! I'm now trying to ween myself off of the evil things. They ruined my sense of taste! Evidently steroids causes something like thrush, a (nonsexual) Candida that grows in the throat. The bacteria causes everything to taste terrible! Bad! Yucky!
My mouth tastes sooooo bad......it tastes like the bathroom floor of the old CBGB's! It tastes the way a really bad poo smells! A metallic slice of moldy toast?  B*I*T*T*E*R!!!!! B*A*D!!!!! It's been going on for a few weeks now and the only thing I can eat without any ill effects is Butter Pecan Ice Cream. Something about the salty/sweet combo levels out the pallet. One (especially one with cancer) can't live on Ice Cream alone. I'm on antibiotics now - And thank god I can drink alcohol with no adverse effects! We got company coming!!!!



I only have 4 more radiation sessions - I stop on November 4th! Hooray! I just have to be there every day! That's hard to do in itself. That's the machine pictured above. It revolves around but doesn't really make any real sounds or emit any lights. And it's pretty quick. I just don't like the idea of having to have it. Who wants radiation????! I think it will be a month before we know if the radiation worked. It'll take some time and another MRI.

Yesterday I had some crazy fever 99.9, 100.4, 96.7, 101.2. So I went in early for my radiation appointment and they topped me off with some saline. I guess I was low. I felt very dizzy and lightheaded. They said it could be tumor fever. Where the tumor is dying and is pushing out toxins of sorts into the bloodstream. This can bring on low grade fever.

As long as I get this taste thing fixed, I'll be happy! - Dan and I are going to have some company!!!! And we plan on going to all the yummy great food places around town. My faves are Chicken Liver Tacos at Nana's Tacos!!!! I used to hate Chicken Livers. I've changed. And Only Burger! Yummy Fried Green Tomato Burger. And Fishmongers! It'll be a lot of fun! I like showing off Durham. It's such a cool place.


Anyway I'm hanging in there, and I want to say thanks to all the people that have ordered my new record. I really hope everyone likes it. For anyone that hasn't gotten one, you can get them direct from us at Dan's website. Of course the money goes direct to my cancer fund. So thank you all!!!


Marsh Of Sleep from Handbook for Mortals by Letha Rodman Melchior

Love to everyone! Letha

Tuesday, October 15, 2013

Breast or Thigh?

Well...It's been two months since I've updated my blog; and there's been quite a few things going on with me. It's hard to stay on top of it all. I had a PET scan on July 9th, 2013. There wasn't too much to report then; a small fracture in my rib (god knows how that got there?) and some linear glowing FDG uptake in my quadriceps. My doctor didn't seem to be too concerned, and since my brain isn't as sharp as it used to be, I totally was thinking it was small bits of cancer in my left calf. DUH!  So, I was compulsively feeling up my left calf, finding no lumps and no changes. Then in the latter part of August, something out of a Three Stooges comedy happened to me. I was in a Food Lion (a supermarket we have down south) and I was picking up some lettuce, walking as I was stuffing it into the plastic vegetable bag; when my hand went straight through the bag and a bit of wet lettuce fell on the floor in front of me. My left foot went sliding out right in front of me, surfing on the small green wave. I realized I was out of control and I had that feeling of hitting the point of no return. I did try to stop my embarrassing fall by turning it into a deep lunge; but there was too much force in it and I rolled on my back with my feet in the air like a water bug trying to flip itself over. Two shoppers came over to pull me up (none of the watching Food Lion staff moved an inch). I felt I was OK . Mostly embarrassed with a sore thumb and a throbbing thigh. I filled out an incident report, and the manager said he would view the video tape. I'm waiting for it to show up on YouTube or in some kind of Fail stream, it was true comedy.

I was all up in arms about my new brain tumors, and as some time passed I felt I needed to re-read my old PET scan. My next scheduled PET was weeks and weeks away at that time; and I was getting really antsy. I read that the suspect spots on the PET scan were actually in my left QUADRICEPS, and a THIGH is the same thing as Quadriceps! My Thigh had doubled in size. All that time I thought I'd snapped a muscle that had recoiled into the upper region of my thigh. But it hurt in a very specific way that was similar to the way my first tumor hurt. Strange shooting nerve pain that comes on strong and with no warning.

September 13th I was going to the Duke clinic for a meditation session, in what they call the Quiet Room. It's a room that reminds me very much of the Round Bar that used to be at the Royalton Hotel in NY. Remember, if you stood in the middle of the Round Bar you could whisper and it would echo and people along the sides could hear it as if you were talking in their ear.
Round Bar
Quiet Room

Anyway, I got my doctor to fit me into his schedule, then he called in a surgeon to have a second look. They both said it could be a hematoma because of the way I fell. Blood collected and trapped inside the muscle. They'd have to do a thigh MRI to really know! Christ! I'm an expensive person to have around. There's always something wrong. Long story short: MRI + biopsy = Chicken Breast sized melanoma tumor in thigh. 10cm x 6cm x 3cm! Yikes!! Plus a dime sized melanoma spot in my pelvis!

Then I went in for for my scheduled PET scan on October 8th that confirmed the two cancer spots and a bit of right lobe atelectasis, which is a slightly collapsed lung. I don't think that part is all that serious, thank god!
 

Then on Monday I went to the airport to pick up Dan from his shows in Boston - one at Weirdo Records (hello Angela!) and one at Cantab Lounge in Cambridge. I know everyone enjoyed it - (he's so great) and we went straight to the clinic for me to have this crazy styrofoam box with hot rising foam that surrounded my body to make a cast. It's all so I won't move during radiation therapy. That scares me, it's my first (real) radiation. I've been pretty freaked out by it. Mainly because, when you think of cancer, the image you think of is a bald withering person, going through radiation treatments and a chemotherapy drip stuck into a port! Christ! That hasn't been me yet - but I've been super scared about becoming that person. 

I'm on steroids now, and I upped my dose of Zelboraf - so in just a week the swelling has gone down, and in my opinion my leg tumor is shrinking. But I don't have real proof. I will tomorrow though, because I'll have my first bout of radiation and I hope that they let me know what the scan from Monday looked like.

NEWS FLASH!! I HAVE A NEW RECORD OUT!!!!! ON VINYL - BUT IT ALSO COMES WITH DOWNLOAD CARD FOR ANY OF YOU WITHOUT A TURNTABLE!!! 

(ps: refresh your browser if you have checked out the website lately)
IT'S
 NOW AVAILABLE ON 
our Website!!
Go to  Dan Melchior's WebStore. The sales direct from us will be linked to my cancer fund through Paypal. It makes me very happy to present this record to the world.



I'm so lucky, number one, for having a loving husband that sticks with me through thick and thin. And really great friends from all over the world who really care about me, who are helping me immensely!  I also have Suki and Mike, and their girls living down here now. They make thing so much better for me. They got me to get out of my slump and get creative with my video for my new record on Siltbreeze Records! Which will be out so soon! Thanks so much Tom!!! Plus check out the new Siltbreeze website

Also Suki and I went to Pittsboro to look for Peignoir Sets. That's fluffy double chiffon lingerie. I'm really into it because it makes me feel purdy! This beautiful set came from Candace El's Kitsch And Canoodle! I love it Candace, I'm floating around the house in my pretty pretty Peignoir.
Pretty pretty Peignoir


I posted the photo below on Facebook a while ago. The funny thing is that, Suki and I happened to be in a thrift store/charity shop in Pittsboro and there was this old lady laughing it up about my purple mohawk. I'm supposing that Lemmie (not his real name) was her son, and right at that time he was trying on a red wig (for halloween?). So I quickly shoved my face next to his for a funny photo! Suki snapped the pic and we all had a laugh! That was the first and last time I saw my (friend for a moment) Lemmie. I named him when I posted the photo. It was a fun day.


And I'm wearing my WFMU shirt! As you all may know this is the silent marathon month. WFMU is asking for pledges so they can set up a performance space venue for the station. Great idea huh! Let's all make that happen.



Well, time to go. I have to be on the radiation table at 8am, so I'm ready for a rest! I want to thank everyone who has put on past benefits, as well as recent ones thank you Dylan and Karen. And all the bands that played:

BLOOD STEREO
"a pair of ill-kempt roosters, fighting over a doughnut. The guy rooster is jibbering in some unknown tongue, turning his face inside out, while shoving the microphone slowly through a hole in his cheek. The girl rooster appears to be pecking at him, either that or she's picking at various trash they have strewn around the stage." - Byron Coley


OCCULT HAND
four hands brew up "the creeps"
now hemorrhoid free!

ONMACHT
maiden voyage of dutch ralf & wild man bills new band
harsh hardcore punk

MEN OH PAUSE
wonky garage witchery
their hex, your brain

HAIRHOLE DJs
no ones favourite night at the penthouse returns
with grease for yr lug nuts

all for a worthy cause
Lethas Cancer Fund


And thanks for the horsey necklace Hayley gave me - that was very sweet.

Red, White(my hair- ha!) and True Blue Friends!


Thursday, August 15, 2013

Dark vs Light

Please play this music by Haley Fohr's Circuit des Yeux while reading this post.
You can buy her new record 'Overdue' @ http://www.circuitdesyeux.net/
I'm in love with this record. Buy it, you'll be happy you did.
video





Fear. Paralyzing fear. This is what I've been struggling with these last few months. It sneaked up on me slow like the kudzu that takes over a tree. I didn't realize it until I was so over-taken, that all I could do was lay on the bed, unmotivated and shivering deep inside.

I was sort of buzzing, but at the same time I felt lifeless. I had the computer on my chest for days as I laid in bed, the only movement was from using my mouse to scroll through Facebook to see how other people were living their lives; then clicking ‘Like’ here and there.

I don't want to be afraid - but I am. I’m very afraid. I got a relatively good PET scan on July 9th. Tiny bits of melanoma in my left calf but nothing to worry about too much. And I was thinking - 'I’m really beating this thing!'

But that’s when the black ball of fear started to grow in me. I had a MRI scheduled for August 6th; I'd been having slight headaches and walking to the right a little more that I want to. I'm a like a car with unbalanced wheels, always pulling to the right; hitting door jams and grazing the refrigerator as I walk by.

It was really interesting - as soon as I was told I had two brain tumors, I felt such relief from the fear. I see now that most of the fear stemmed from the unknown. Once I knew what was going to happen, and a plan was in place; the fear subsided quite a bit.

I’m going back into the mask on August 22nd with the laser pointed at the dreaded spots. I've had Radio-Surgery done before, so I'm not too worried about the outcome this time - but three months from now when I get a follow up MRI; I'll be in that black space again, because if anything shows up then I'll have to do whole brain radiation (WBR) and that scares me to death. No one knows the complete effects of WBR - it’s different for each person. My brain surgeon can't give me an answer on how much I'll be affected by it. Most people lose their short term memory; which I already have some issues with. It can make people more susceptible to stroke, and Neurocognitive function impairment. Decline can be expected four months after treatment. To what degree is unknown.

I can see the pinpoint of the black mass of fear slowly opening again. I have been thinking of death in abstract ways. Life is abstract. Existence is abstract. The meaning of life is elusive - some say the meaning of life is just the task of living.



Viktor Frankl concludes that the meaning of life is found in every moment of living; life never ceases to have meaning, even in suffering and death. People who have some reason to reach for, some hope to achieve something will live longer. When a person loses hope, he is doomed.

 It’s an amazing thing that no one in the world knows what happens when consciousness ceases to exist in a person. By all means it is the definition of death - but what then? Nothing? Something? Reincarnation? Do I exist in a parallel universe, and if so will that be enough for me? I suppose I wouldn't know because I could die in that universe too! All this thinking makes my tumors throb.


 I’m trying to put in order what I think and what I want to do once I'm gone. I am leaning towards a green funeral. You can find out what states have facilities for green funerals at the Green Burial Council. Lucky for me, there is a place in Raleigh where you can be buried without embalming fluid and without a grave-stone - just some trees and natural wilderness to grow around you. I want to be minus the coffin too! Just a burial shroud and it doesn't have to be a fancy one - just one that will biodegrade.

 I had my wonderful beast friend Rufus cremated when he passed six years ago. I would like him to be buried with me; his ashes laid out along my side. I think that would make him happy too! He’s been cramped up in a little white plastic box on our fireplace mantle far too long. Then we could play 'patty cake patty cake' together forever and ever. And maybe hook up with my first love, Slash. He was a black version of Rufus, and my first special furry friend. I was 13 when he died, it was tragic.



I had thought I was going to die early on in my diagnoses, and a few times since. So behind Dan’s back, I contacted local funeral homes. Yikes!!! I asked for a break down in prices. Coffin vs Cremation. I thought cremation would be cheaper - but you have to buy a body box. It was $400.00! For a cardboard box!! I called the manufacture of body boxes, and they were selling it wholesale for $19.00! My God! That’s a mark up!

I asked them if I could order just one. They said no, they only sell to funeral homes, not individuals. So I called the funeral home and asked if I could use a refrigerator box. No - not allowed! Crazy! They got us all over a barrel! If you would like some fact's about the true cost of end of life services refer to this website: Funerals and Rip-Offs.

Some good news: I found out that I get my burial paid for by the Osage tribe for up to $3,000.00 - and I can be buried anywhere in the United States. That's the bit of land we American Indians get back from the genocide of the Indian Wars and the land that was stolen from the indigenous people by the white immigrants of the "New United States".

 So, awhile ago I saw this great talk on TED, by Jae Rhim Lee, about cremation and how it releases toxins into the air, and Jae came up with a death suit made of dirt, mushroom spores and bugs. That sounds appealing to me, you get a jump start on giving back to the world. I’d rather be a tree than be under one.


Another interesting thing about what happens to the brain when near death, is that there is a defense system in place inside the Pineal Gland called Dimethyltryptamine (DMT). When the brain is in danger the pineal gland releases DMT creating white light and psychedelic epiphanies. This DMT can be found in most living things and is easy to find in certain plants. It is used in ceremonies in the Amazon jungles, to see the reality of the world. 

I found this interesting - because while watching You Tube videos of people's experiences I recognized that I too had that experience in the hospital when I was in my first round of IL-2. What I wrote back then mirrors what these many people experienced in their life changing epiphanies. 

Written on March 27th, 2011.

The Meaning Of Life Between Each Blink

I kept the DVD player going day and night - it got easier to watch, it became great company. The thing about it was, that as the days went on - I started to see things behind the images. There were bright yellow, trimmed in black, triangles and rectangles holding all the images in place. Each particle of an actors face was hinged on one of these geometric shapes. I could only see them when the scene changed or when I blinked. I noticed as I reached the higher numbers in the amount of doses I took,  I could see there was something behind everything that existed when I blinked.  Maps, formulas, and equations squashed in-between the spot where your upper and lower eye lid meet. These images showed how everything is put together, how all things work - the secret to life if you will.  I kept thinking that's so much information for one person to know. How could I possibly retain it all. So when Dan popped in to watch over me I tried to forget about it and instead told him of my animal friends waiting for me at home. Dan asked which friends? And I replied, " Beaky (our sweet parakeet),  and you know, the furry hippo!"  Dan just laughed!

Quotes on Death

I'm not afraid of death, I just don't want to be there when it happens. - Woody Allen

I'm strongly against it! - Woody Allen

What if everything is an illusion and nothing exists? In that case, I definitely overpaid for my carpet. - Woody Allen

From my rotting body, flowers shall grow and I am in them and that is eternity. Edvard Munch

Never, never, never give up. Winston Churchill






I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear.


So I guess I'm just doing my best to live and keep on the edge of excitement and creativity, and confront my fear to make friends with it, and learn from it. I've been practicing meditation, I find it hard - but I want to learn to be with myself and be aware of the world around me - I'm sure there are so many things I've paid no attention to in the past.


Funeral stills from Who are you Molly Magoo


Love to everyone who has been so caring - it's been very special to know I have such great support  around me. It's one of the things that keep me going. Thank you!

I would love it if anyone that reads my blog would become a member of my page - but don't feel that you have to.
And if anyone wants to share about their feelings of how they want to go or what they think what happens at the point of death. I'd love to know your views. Just make a comment. I'd be interested in what other people think. Love!

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:     help@patientadvocate.org 


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?!!!!


OL' BLUE EYES!


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!