Tuesday, March 4, 2014

It's Time To Think Of Others




This is the time to think about others.  I would love for people to sign my petition to

have all US hospital Food Services to be required to serve healthy nutritional food to patients receiving care.

This is such an important matter! Very sick people are given substandard food. This keeps them sick. Without nutritional food it is very difficult to get better. This problem is nationwide, and though changes are slowly being made in some hospitals, health, nutrition food should be a standard of basic care in every hospital. 

Please sign my petition. It really matters. You don't even have to join anything - just go to the link and add your signature - you could also say why you think this petition is important. Please, you can make a difference in what sick people are given as food!

Why should anyone have to eat this!???


Thank you everyone!!!!

Wednesday, February 26, 2014

Letter To Chef Gordon Ramsay

During my stay in the hospital, I was quite traumatized by the food. It was so, so bad. I imagine it's much worse than prison food. Duke Food Services heard of my complaints and sent three different people on their staff to talk to me, as I laid in my hospital bed. When talking with them, I told them I would get Chef Gordon Ramsay on the case; He could change the system where they couldn't. They laughed. But they don't know me. When I have an idea I'm a lock-jawed terrier that won't let go of a chew-toy! I become so obsessed, I won't stop trying until I've exhausted every nook and cranny, every alley that I can think of, that will lead me to success in obtaining what I want.

Dan and I are fans of Kitchen Nightmares, Masterchef, and Hell's Kitchen; so we know very well what the production company is called. At the end of each episode, I'm assuming it's Ramsay's young child, who says "One Potato, Two Potato!" Dan and I can't help cringing, and then repeat it over and over, to irritate each other.



So I immediately looked up 'One Potato, Two Potato' only to find that it's quite impossible to contact anyone on the staff directly. Aside from that, I really wanted Ramsay himself to read my letter. So, I thought of other ways to get my message to him. Facebook! I wrote a private message to whoever handles Gordon Ramsay's Facebook Page. I pleaded with them to forward my message to Ramsay himself. I got no response from this attempt.

Next I thought if I applied for a job at Ramsay's restaurant in NY on 151 W 54th st, I could attach my letter as the CV on the application. I filled out the application using all open fields to get my message forwarded to Chef Gordon Ramsay. I don't know if a human actually looked through the submissions - but it seems unlikely.


___________________________________________________
And this:
                                                 No one read my CV it seems.

___________________________________________________

So, after a day or two I got an email saying I wasn't right for the job.


________________________________________________

I thought of doing an open letter on facebook in hopes it would somehow be brought to his attention. Then I noticed a casting call for a health show that Optomen Productions was set to do in the future. I thought this is the only way I can be sure that someone will really read what I have to say. So I emailed the casting department at Optomen. This is the letter I wrote:

________________________________
Dear Optomen Casting,

My name is Letha Rodman Melchior, I’m very very ill. I have both breast cancer, and melanoma stage IV, which of course, is the worst of the two. I've just been released from Duke University Hospital where I've endured a 7 day stay. While there, I thought that I would present Optomen Productions and Chef Gordon Ramsay with a challenge. A challenge which could be quite impossible, but if anyone could be successful it would be Optomen Productions and Chef Ramsay. I would like for your team to take on Duke University Hospital’s food system and reconstruct it into something that's nutritional and something that the hospital can be proud of. Duke University Hospital is one of the top 10 rated Hospitals in the USA; why it lacks in nutritional food is beyond me. I know Food Services is a problem in a lot of hospitals worldwide; I also know that now is the time to meet with Food Services at Duke University Hospital, because they are going to try improving their system in May 2014. I don't have much faith that they'll get it right. The 'Triangle Area' in North Carolina has an abundance of local farms and resources to pull from. Please think about coming to Duke University Hospital and help them make the right choice.

As it stands now all hospital meals for patients at Duke are contracted out to a company called Aramark. I can not tell you how bad that food is. I know there are many hospital food jokes out in the world - but this is not a joke. As I laid in bed for 7 days the food was inedible. I tried to think of things that they couldn't get wrong; like macaroni and cheese. It was if someone had regurgitated on to a plate. One piece of breaded fish; it came as paper-thin deep-fried bit of rubber blackened on all sides, so hard that it couldn't be chewed. There was only one bite in that, that was edible. A bagel, that if thrown up against the wall would shatter into a million slivers. I actually lost over 10 pounds by being given inedible food.

A friend of mine happen to bring me some food from Whole Foods, with a bowl of fresh fruit to start. One bite of a beautiful strawberry and I was sent to heaven! I couldn't believe how my body responded, I could feel it helping me get better - out of one bite!! I realized there were other people who may have been sicker than I was, who are depending on nutrition to help them get better. Not anything fancy, just basic nutrition!

The Duke Nutritionist came by and I had to ask her why the hospital food had no nutritional value. She said that the food was contracted out by Aramark and the food was cooked off site; flash frozen, then sorted at the hospital, reconstituted and reheated, then sent on rounds to the rooms. By this time, the food ceased to be food. I would hardly call it stomach filler. Truly most people wouldn't feed this food to their dog. I couldn't understand why a hospital would contract food out unless the food was nutritional. The woman said that most cancer patients can't taste their food and complain anyway. She said they couldn't make everyone happy.

Cancer patients NEED nutrition to stay well! I got very mad. I said I would get Chef Gordon Ramsay to come to Duke and get things changed! So I'm pleading with you to come to Duke University Hospital in Durham, NC and take over. Make this very great hospital and cancer clinic better by bringing basic nutrition into the program. I know it would save lives. Truly. I didn't start to get better until I had my friends bring me real food and real fruit.

The Duke Food Services sent about 3 other people around to take my complaint. I’m not the complaining type - but I do want to stand up for myself and others to get basic needs. Nutritional food in a hospital is a high priority for me.

Please consider this. Whoever reads this, please present this to Chef Gordon Ramsay, or Stephanie Angelides or one of One Potato Two Potato development, or one of the Optomen production staff.

Please, I beg of you, it is wrong for sick people to be given un-nutritional food.

I can get contact names and numbers for you and I know that Duke Hospital is going to try to ‘tweak’ the food system in May, 2014.

I can go into more detail if needed. Please help.

Thank you!
Letha Rodman Melchior cancer warrior!

_______________________________________

This was the reply I got:


__________________________________________

I don't know if they really did forward my letter. I'd like to think that they did. I'm still thinking of the open letter on Facebook. Wouldn't it be great if Gordon Ramsay did come to Duke University Hospital and change things? I don't know how long, or what it's going to take to have better food worldwide in hospitals, and schools.

It's appalling that these big companies are doling out substandard food. Lord knows what deals are made with suppliers to Aramark. And what kickbacks and deals Aramark and other companies like it are making with the US hospitals.

I was sent some great links and found a few others online. It's going to be so hard to change things.

http://www.healthyfoodinhealthcare.org/pledge.php

http://www.organicconsumers.org/articles/article_10136.cfm

http://freshadvantage.com/tag/healthy-hospital-food-2/

http://www.psr.org/environment-and-health/environmental-health-policy-institute/responses/food-matters-in-hospitals-and-for-prenatal-health.html



If anyone knows how to get this letter to Chef Gordon Ramsay, Please let me know.

Thanks!

Love,
Letha

Friday, February 21, 2014

Goodbye Cruel World

That Tuesday afternoon, after Dan left , I closed my eyes and slept. I still had low blood pressure - but at least it was detectible. 84/59. I had a very low grade fever, nothing over 100.4. The oxygen in my blood was also low. It was below 85%, so I had plastic tubing up my nose and around my ears.

You know when you see really old people dragging those oxygen tanks around? You're bound to think to yourself, "You silly smoker, look at you now! Why didn't you quit?"
As a smoker myself, who quit, I'd be so embarrassed if I had to wear oxygen all the time. I'm so glad I stopped when I did, and I'm glad the hospital didn't send me home with oxygen like they threatened to.

In room 9315, at Duke University Hospital I was once again labeled a fall risk. That meant if I ever got out of bed, I would need a nurse to stand watch, just to make sure I didn't break my neck. They weighed me while I laid in bed. A button was pushed, an alarm was set, and the whole bed was turned into a giant scale. Anytime there was a change in weight a high pitched beep would go off. This way they'd know if I'd escaped to take a piss.

I have to say that it was the most uncomfortable bed I have ever laid on! It was designed especially for people that couldn't move. It would automatically adjust to take pressure off of the places on the body where people get bed sores. It drove me crazy the whole time I was there. The bed could be puffed up to 'maximum inflate', but it was designed not to hold it. After 20 minutes the bed would swallow me up, trapping me into one position, though my legs and feet felt like they were floating where the bed had puffed out like a balloon. It made it impossible to get any leverage to move properly. To make matters worse the controls to this part of the bed were completely out of reach for me. I had to beg nurses to press the key button, then hit the inflate button. Most of the nurses didn't want to bother, because they knew the inflate wouldn't hold, or it was just one more thing for them to do. Truly the bed was a form of torture. It felt worse than a half filled waterbed, or a half deflated plastic pool mattress.

Remember These??
In the first day and a half I didn't have the energy to even think about getting up. I hardly moved at all, and it was my first experience in using a bedpan! Horrible! This may be thought of as crass potty-talk, but using a bedpan is humiliating. It feels so wrong - I can't tell you. Only people who have used them know the shame, the disconnect of the mind and the bowel movement, and the embarrassment of having onlookers hovering over you during what should be a very private time. I'm going to go out on a limb and say that for most people, consciously or unconsciously, there is an instilled ending in the whole restroom/bathroom procedure; the sound of the water interacting with the number one, or number two, whichever way it happens; and the action of the flush, with a possible glance to make sure it all goes down. And the grand ending with the sound of water rushing down the sink drain during a brisk washing of the hands. I couldn't make it to the sink, so I was given a can of Steris Foam Sanitizer, as if that would be enough! It was all so wrong! It's disconcerting when you don't experience those familiar bathroom sounds. It's haunting!


I had thought that I would've been home by Wednesday, but no. Somehow I wasn't getting better. I still had fluctuating fever, low oxygen and now there was a rasp in my lungs. They arranged for a bedside chest x-ray. It showed that there was fluid on my lungs. When the doctors made their floor rounds, they told me that the fluid was either from an infection that I came in with, or when I was in the ER they had topped me off with too much fluid. It had nowhere to go but in my lungs. They said it could also be a possible Pulmonary Embolism. That's a clot or blockage that doesn't allow proper breathing. And it can be lethal. Was this the beginning of pneumonia? In the last few years there have been people I've known of, who either died or remained hospitalized for months by having Pneumonia! How did my illness get to this point?

I don't really remember too much of those days in the hospital. Though somethings stand out. Like the first breakfast I was brought. Scrambled eggs (cold), toast and an unripe banana! Sometime in 2010 when I first entered the Duke Cancer Hospital and Clinic System, I was asked if I had any allergies. For some stupid reason I wracked my brain for things I was supposedly allergic to. Most of these allergies were self diagnosed. Now every time I check in at the clinic, I have to go over these three things. Dan and I just roll our eyes, because I never ever should have said Green Banana, Monosodium Glutamate, and Lidocaine. It's true about the Lidocaine, but the banana and the glutamate, I was just reaching out for something to put down. My cancer counselor had come to visit me that Wednesday morning and even she noticed the Green Banana on my breakfast plate.  We both looked on in disbelief and laughed. That banana could have killed me if my allergy were true and I was delirious enough to think a banana was safe to eat. What were the food service people thinking? It was even listed on my menu slip that I had three killer allergens.

The days went on and on. I had graduated from bedpan to bedside commode. I still had to be watched, and had to wait for what seemed like ages for someone to arrive after I pushed the nurses call button.  Before my feet touched the floor the nurse had to put on my grip socks for me because I couldn't sit up to reach my feet. It was all so tiring. It's really hard relying on other people especially for the most basic things. It wasn't until a week after I was released that I realized I could have used some slippers. That would have made the bathroom trips so much easier! I bought a pair for next time I'm admitted.

I was named 'Pretty Toes' by the beautiful, and very sweet Lorna who cleaned the rooms every day. I can't express how much a smiling face with a bright and cheery attitude helps when you're chained to a bed, and at the mercy of the people working the floor. Thank you Lorna for being who you are, and spreading your warmth to all the people that need it.

I did have pretty toes, too! I had my first manicure in years just a week or two prior to my hospitalization.

One day the doctors came in to tell me that they wanted to do a Bronchoscopy. This is a procedure where a camera is threaded through your nostril until it reaches your lung. So they cart me, bed and all down to the basement. I talked to the nurses down there and told them that I didn't do well with Lidocaine, that it was pretty much ineffective. If they were going to use it to numb my throat, it may be hard going. This I knew already from an endoscopy I had done last year.  Interestingly, they took no notice of what I said, and with what looked like a caulking gun, a nurse began making a thick swirl down my throat like she was doing some 'Good Housekeeping' cake decorating. She was smiling as she did it, and I about choked! I forgot to say that I was strapped into a gurney chair that could've been one taken from Guantanamo Bay.

                                                
                                         


I gagged, coughed, spat and my watering eyes clamped shut. I said 'is this some kind of torture?' I asked why they didn't put me under before doing that. That's when they told me they were going to do "Twilight". I pleaded with them to put me somewhere between "Twilight and Midnight!" I told the doctors who were doing the procedure that if they didn't put me under deep enough that I might possibly fight back. They chuckled. I don't remember too much, thank god - but they had put a wet washcloth on my forehead; it kept slipping toward my traumatized nostril. I opened my eyes and saw my arm being swatted down by a nurse every time I tried to pull the dangling washcloth off my head. It was like a sissy cat fight, every time she swatted, I swatted right back. I was trying to talk and explain what I was doing. I just wanted the washcloth off my face. I couldn't speak through the apparatus in my mouth - it was way worse than trying to talk at the dentist. They kept telling me not to talk. After it was over, I think I might have said, "I told you so! I told you I'm a fighter!" to the doctors in defiance  - but that may have just been a 'Twilight' hallucination.

Eventually I got put on a long leash of oxygen tubing in my room which allowed me to get up to go to the real bathroom. I had to make sure I didn't pull the IV from my arm, and all the tubing, plugs, and machines had to be pulled around in just the right way. It was a lot of work for someone that was still shaky on their feet.

At first I didn't really want visitors, even Dan, because I was either sleeping or having some test or having blood withdrawn. I didn't even watch TV. I slept. It was the day after being admitted that Dan came to visit the first time, he walked all the way from home to the hospital to bring me a real hamburger! I felt bad for Dan because after I ate it, I wasn't good company. Then poor Dan had to walk all the way home before it got dark.  I think that's the day he caught the terrible cold that really knocked him down for over a week!

I can't remember what day it was when Dan and Suki came to visit together. Maybe it was the third day. They both had to wear face masks while in the room. All doctors, nurses and hospital staff had to wear yellow gowns and face masks when in the room too. It was written on my closed door that I was contagious. After a few days they took the sign down.

While Suki and Dan were there that day, the Duke Hospital nutritionist came by for a visit. She asked how everything was, and I had to ask her why the hospital food was so bad and un-nutritious? All food was overcooked and over seasoned, the salads (mostly iceberg lettuce) were brown around the edges, and all fruit was jellied, or covered with sugar laden fruit flavored syrup. Dan had brought me a real salad from one of the cafeterias designed for visitors and hospital staff. That food wasn't that bad. The food served to patients was really, really bad. WHY?

The nutritionist said that it was hard to please everyone. And that cancer patients sense of taste is messed up so they don't like anything. I got mad! I thought 'so what!' I know, I've had certain times where my taste buds were all mixed up. But I and every other sick person out there needs nutritious food!
What you see on this menu is far from what you get. Think of dumpster diving...the images of food you'd come up with would be more accurate than what's depicted here. 
Though some of these things sound appetizing - I assure you none of it is! 

I became a crusader for better food, especially after my friend Melissa brought me homemade Pho soup and squash,and the best of all, fresh fruit!!! I ate a strawberry and my body woke up screaming for nutrition. I immediately felt better than I had in all the previous days. Thank god for friends! Thanks Melissa! I had Suki bring me food too! Real food! It was marvelous! Thank you Suki! Eating real food brought me back to life and started me on the path to recovery.

After I told the food services lady not to bring me any more trays, I had visits from three other people on the food board at Duke. They said they had been told I had a problem with the food. One woman actually sat down and wrote down my complaint. I told them it was wrong to serve people the food they were serving. It was keeping people sick. I told them I was going to sic Chef Gordon Ramsay on the Duke Food Services. I can't understand why food can't be prepared on the premises - or at least close by - and why the food can't be healthy.

So, I did, I did contact Chef Gordon Ramsay's production team with this challenge. Change Duke Hospitals Food Services into something healthy. I'll post the letter I sent out to Chef Gordon Ramsay as well as the response I recieved in my next post.

If anyone out there knows Gordon Ramsay personally, please contact me.


To bring this long post to an end, I want to give my thanks to some outstanding people that took care of me. I had a great nurse named Cary, like the town between Durham and Raleigh. She really cared about what she was doing. She was so attentive, sensitive and just great at thinking ahead. She was my favorite. There was Grace, Susan, Nicole, Lila (who was sweet and had amazing stories) and Julie. Thank you all for taking care of me.

Thanks to my doctors, Dr. Reidel, who I've deemed my favorite, in place of Dr Scott Pruitt (who I miss terribly); and Doctor Verma who was very thorough in trying to find out what was wrong with me. In conclusion, the source of my illness was never found. Since I was released from the hospital on February 11th, I've been getting stronger every day.

Thanks to my sweet husband who keeps me going. Seems whenever he's not around, I get into some kind of trouble. If it weren't for him coming home when he did I  really could of been a goner. And Suki, thanks for bringing and watching 'Totoro'. It was very special for you to share that with me. Melissa thanks for the yummy healthy food and the great company. And lastly, thank you Shawn for making that trip before the snowstorm to bring me and Dan healthy good food that lasted us through the week of the storm. I love you all dearly!

One more thing...Starting Tuesday is WFMU's 2014 Fundraising Marathon! Be sure to help our world favorite freeform radio station stay alive! There will be all kinds of prizes and exciting music to hear. If you want to pledge or donate early to WFMU go here.



I'll have more updates coming soon, including my collage art show that Michael Galinsky and Suki Hawley put together for me. And the amazing benefit that Rebecca Gaffney, Jen Rogers Anderson, and Laura Rogers put together for me. Also I had some great reviews of my record Handbook For Mortals. I'm excited to write about all these great things. So look out for more to come...



Monday, February 17, 2014

Warning - A Graphic Descriptive Tale

  

This particular post isn't for the faint of heart. So reader beware! So much has happened in the last two months, it's become a blur! I think I'll have to break up all the happenings into chunk events, and in no particular order. I'll start with the most current event that sent me into the hospital for 7 days.

Thursday, January 30th, Morning:

We got up early to get Dan packed up and off to the airport. He was playing a show in Philly over that weekend, as well as doing a radio show. It wasn't even really 5 days that he'd be gone; he was due back Monday.

Once we got his things packed in the car, we stopped off at Biscuitville so I could get a cuppa Joe with a sausage/cheese biscuit. I ate and drove at the same time. The airport isn't far and the drive can be done in about 35 minutes. We'd done this a million times.  I'm always happy for Dan to escape the drudge of being home taking care of me. He does such a great job - it's a bit unfair. I always wish him the best time he can possibly have on his trips; and I know it's hard for him because he worries about me all the time while he's away.

I knew how quiet it would be without him around, it made me a bit melancholy.  I thought, me and the Beak would spend quality time together. I'd get to know his feminine side. (We found out that Glen is a true Hermaphrodite - he has one testical and one ovary; and has layed 3 eggs!) We could watch our movies on the computer and try to learn some new phrases. Like, "I'm a vulture!" It would be fun.

About halfway through my drive home, I felt hot, sweaty and chilled - Oh! Christ! Some sickness was wrapping it's boney finger around me, and fast! I hadn't been anywhere outside my house for days - so it must have been squirming germs on my sausage and cheese biscuit! Was it intentional? Did someone hawk up something onto my biscuit bun? No - That would be a bit over the top. Someone likely came to work sick, because they can't afford to take any time off, so a sneeze, a cough, "poof," a light coating of germs on my breakfast bag! I was done for! God knows how many germs were spread, and to how many people that day, via Biscuitville.



As soon as I got home I fixed dinner for Glen, and myself. Dan and I were trying to change Glen's eating habits. He's such a picky, junk food junkie. He slightly pecked at his new bird food, and mainly ate the pasta I was eating. We watched TV. I was feeling so tired. I kept nodding out, it was no use trying to stay awake. I decided to go ahead and sleep the sickness off. I was sure I'd feel better in the morning. I did feel better! That afternoon, I went to get soup and veggies at the local chinese restaurant down the road, just to make sure I was eating and staying hydrated (It's so hard to make yourself eat and drink properly when you feel lousy) I had such horrible sinus congestion - I had a pretty nice layer of kleenex going on the floor where I had missed the trash bag. I was amazed how much stuff came out of my nose! It was unlike anything I'd ever seen before. This stuff looked like it had been up there collecting dust (and gunk) since I had my pituitary surgery in November 2011.  Overwhelming chunks of what looked like sinus lining mixed with old rubber cement mucus and blood - It just kept coming! I looked it up on Google, and it looked very close to Rhinoliths which are a rocks, or solidification of mucus and nasal debris. Yuck!!

I settled down to watch one of mine and Dan's favorite TV shows, Monk, (on Friday's at 8:00 - 2 episodes back to back). It was going to be a cozy evening, just Glen and me. I flipped around to channel 28, and that's when I realized something was wrong. I checked the online TV guide, and "what the what's?" I lost a day! I lost a whole day! It was Saturday, and Monk, was not on!!! What happend to Friday? I don't remember having conversations, or being on the computer or any of it! I do remember hazy moments of trying to talk to Dan and Suki - but my throat was so dry and scratchy I wasn't good at keeping my end of the conversation up. And I can't be sure which day that was. It was quickly turning into The Lost Weekend - but with no drinking! I did notice that Glen was still out of his cage, and now had 'no prob-lem-o' eating his new food. He must have caved in on that lost Friday, it was the only food left out for him...


I took my temperature and it was 100.1 (Not too high I thought) I took an extra prednisone and went back to laying down. I thought for sure I'd feel better Sunday. I don't remember Sunday much either. I tried to do the dishes and some straightening of the house. I was so weak. I had bouts of diarrhea that whole week (unfortunately it's a typical side effect of the cancer drug Zelboraf), with Imodium it's usually manageable - not this time. I didn't even realize I was hitting the bathroom hard - because it had become so routine for me. Take 4 giant Zelboraf pills and you're off, unless you take an Imodium in the nick of time. Then it's another 4 before bed. 8 each day! Imodiummmmm!!!!!  Them Z's there, ain't no piddly small pills neither! 

I was drinking water by the gallons. I went to sleep after putting Glen to bed, knowing Dan would be back the next day and everything would be better.

When Dan called to say what time he'd be back, I asked him if he wouldn't mind taking a cab home; I didn't think I could drive. I was so glad I was getting Dan back. He arrived. I could hear him in the house, he open the bedroom door, and I really wanted to run into his arms and give him a great big hug and kiss - but instead I told him I was sick, possibly contagious, and that he should stay far away. He walked through the door into the sea of used kleenex on the floor. All those days laying on the bed, my aim just got worse and worse, and I soon gave up even trying to get a dunk shot into the trash bag.

Tuesday, February 4th, Early Morning:

All through Monday night Dan kept checking in on me. I was always thirsty. It seemed I couldn't get enough water. I had sweaty chills. I felt terrible. I would go as far as to say, I was delirious. Dan poked his head through the cracked door. I woke up and all of a sudden; I knew I was going to be sick to my stomach. I felt sweaty and feverish, I pulled myself up out of bed and ran to the bathroom.

Ocupado, damn!

I headed to the kitchen and in a split decision, decided against barfing in the sink and hovered over the kitchen trash bin instead. Dan came out the bathroom door as I ran him over. "What's going on?" he said, as I pushed my way past.

This is a disgusting part - but it happened. I had to run for the toilet because I was about to erupt like a Flaming Wheel Of Destruction! Both ends were about to blow.



My mother had always taught me to wear clean underwear in case you got hit by a car.  This went through my mind as The Flaming Wheel Of Destruction blew out at both ends. Cripes! I mean really CRIPES! That was a new one for me. I had barfed all down my new baby blue t shirt, into my underwear and pants! Say again...! Anyone have the guts to admit something like that ever happening to them? I was so sweaty and tired. Dan said my head was wobbling around like a bobble head with a broken spring. My head had two positions, backward or forward. When forward I was forced to look past my puke top into my pukey panties. Backward was a better view - the medicine rack and the ceiling. I couldn't move - all my muscle power was drained. Dan asked me to get up and get back in bed. I just couldn't do it. I couldn't move, at all. I could hardly talk. I could see Dan's frightened face as he asked if he should call an ambulance. I whispered, "Yes." Dan was on it. I somehow managed to kick the up-chucked pant and panties off. I was left in my pukey blue t. We could hear the sirens off in the distance getting closer all the time. Dan tried to urge me off the toilet - but no way! I was going in rock'n'roll style, the way of the "King!" Elvis.

Fun Fact: Judy Garland also died on the throne. I didn't die; but Dan and I didn't know then how close I'd come.


The sirens were overwhelmingly loud - out in front of the house. I still couldn't move, I had used up all my adrenaline. I have to take prednisone to keep me going. I can't make adrenaline because of my damaged pituitary. So I was dragged off the throne by some really nice people, who didn't seem to mind that I had a vomity blue shirt and no panites on. They just mumbled that they'd seen worse. Dan is asking them questions and answering questions as to how I ended up in such bad shape. They hoisted me onto a plastic body bag and swung me up on a gurney. It was all very fast and I couldn't see around me much. I did see a firetruck, and I noticed my neighbor, I think. Dan told me later that it was 7AM and everyone was on their way to work. Fun for all commuters, a bit of excitement, and a real eyeful. Not something you see every day, a half naked, pukey old lady, with a purple mohawk being shoved into an ambulance. 

Once I was locked in the back and Dan was in the front cab, we took off like a shot. It was my first ride in an ambulance. The EMS guy kept slapping me, saying the things you hear on TV shows. "Stay with us!", "Don't go to sleep!" I remember he was injecting me with things and saying he couldn't find a pulse or get a blood pressure reading. The sirens were so loud. The guy was trying to keep me distracted telling me the names of the different siren sounds. I thought, I might be on my way out of this world; but I'm not 10 years old! Duh!
No, they saved my life, and were very nice. The ride felt like it took forever. Dan said it was like two minutes tops!

I was wheeled into one of the partitioned rooms and suddenly there was a crowd over me. People saying things like, "I still can't get a BP reading!", "I can't find a pulse!" 10cc's of this 10 cc's of that. I could see Dan sitting next to me, making faces at me, and holding my hand; and being very very sweet to me. A doctor jabbed me with a huge needle of adrenalin. I remember his face asking me questions - but I couldn't make out what he was saying.
After a CT scan - the doctor with the big needle said I was being admitted to the hospital and I needed to sign some papers. I found myself in a hospital room on the 9th floor with no underwear, no shoes, no socks.                                          
Dan stayed with me until I felt comfortable. People kept popping in every few minutes for tests and such; so I told Dan to go home and rest. I was seconds from sleeping anyway, while hooked up to a bazillion liquids through a painful IV. Dan asked if he should take my shirt home. He left and I imagined him walking home with my Pukey Blue T in a Duke Hospital "These are my personal belongings" bag. Then I thought about how bad things could have gone if Dan hadn't come home when he did. He truly is my hero, my rooster, the one that keeps me going! The one that keeps me living.

I will continue this story in the next few days. Stay tuned!

Friday, January 17, 2014

Gyros With Tzatziki Sauce, Anyone?

This is how I feel when I think of all my friends in NY and all my friends all over the world.
I feel such gratitude; it's hard to put into words. The support you all give, emotionally and financially, has kept me going when times have been rough. My psychiatrist asked me how I do it? How do I remain positive when dealing with all the medical issues I've come up against. I've had such difficult times, that when I look back, even I can't believe that I got through it all! My answer to him was, "I know people care about me. I know I'm loved. I have such a network of support, that I have to keep going, I can't give in to this illness. I have people I love that are rooting for me. I can't let them down by giving in to cancer. I can't have it rob me of my life."

I tell him that the people around me keep me positive, and encourage me in so many ways to never give up, and never give in to negative thinking. He's amazed. I'm amazed! I'm sure I'd have lost my will to keep living at times. I know I'd be way worse off without the love of my friends. So, thank you all so very much. I've said it before and I will always say it; I couldn't do it without you all.




I'm elated to have such great friends!
Every time guitars are strummed a birdie gets his wings!


Gosh! I've let another two months slip between writing. I haven't written in a while because I've been feeling worn out. I had stomach cramps that hurt just enough to make doing anything kind of a drag. Sitting up to write emails, facebook messages and just anything was hard. I'm now taking Ritalin - boy it's made a difference! I'm up and out of bed. I can type without too much trouble and I feel more like my old self. I'm so glad.

December 3rd I had my brain MRI and I was so relieved that I wouldn't have to have Whole Brain Radiation! I do have two spots that are active; but they're small.  They just need to be watched. March 7th they'll take another look - I'll be so upset if anything is found. I'm sure my brain surgeon will strongly suggest the thing I'm most terrified about, WBR! I feel that it will be the beginning of the downhill slide of no return. 


My leg radiation went well, I suppose. It was pretty ugly; my thigh had turned black, and then peeled, like when you have the worst sunburn EVER! 
Greek Gyros sandwich with Tzatziki Sauce, anyone?
or how about'a

My thigh looks almost normal, now. Well, except for the cancer is coming back. So much cancer shit happens in such a short amount of time; its really hard to stay current. The radiation did work, when I had my check up PET on December 18th it was evident how much the leg tumor had broken up. I was very happy about it! But then there was this great big glowing blob on my right breast! My oncologist swore it was cancer. He just didn't know what kind of cancer, breast or melanoma.

I immediately asked for a biopsy. The breast people didn't want to give me a biopsy - they wanted to do an ultrasound.  I'm thinking, 'How can you tell if it's cancer just by doing an ultrasound!' Anyway, I had my oncologist set up an appointment with a breast surgeon. The breast people didn't call.
Then the holidays went by (Me, Dan, and Glen had a wonderful Christmas Day!)

So, when January 2nd rolled around I told my oncologist that I never heard from the breast team and also that my leg tumor seemed to be coming back. I eventually met with a breast surgeon and had a FNA (fine needle aspiration) and was told within 20 minutes that it wasn't cancer in my breast. You'd think they could've told me that before the holidays! It's a sebaceous cyst. Now, don't go looking up sebaceous cyst unless you have a craving for gore and love vomiting at the sight of revolting things. Just take my word for it, it's gross. I'll have surgery to take it out because these kind of cysts don't go away on their own. Surgery is slated for February 13th. I'm not afraid, it's a piece of cake!

Back to the leg...You know when you break a thermometer, and all the mercury spreads into little beads? Well, that seemed to be the case with my leg tumor - but mercury also gathers back up into a mass. I'm a pretty good judge of my body and when things are going wrong. So I felt that I had to have it looked at again. I saw my radiologist and he said I had the highest dose of radiation that I could take, and I'll have to look at other options to treat it if it is cancer. Doing a FNA on my leg wouldn't do any good - it'd be like finding a needle in a haystack. He said it'd be safe to wait until the 29th of January when I see my oncologist. 

I'll have a full assessment then, to talk over new paths to take in my cancer treatment. It'll likely involve real chemotherapy. I'm not excited. 
This PET is not current (Not from 2 days ago). My slab of chicken is coming back! Damn!

  

And one more bit of medical news:  I bashed my front teeth through my upper lip a few weeks ago. My big toe got caught up in my pajama pants leg. I bent over, hopping on one foot. (That's something I should never do anymore) Oh man!!!! Nothing like the floor to straighten your smile. Dan was just coming in the door as I realized I was face down on the floor; and as I got to my feet I got very afraid of what happened. There was blood everywhere. I didn't know how bad it was, so I called out to Dan, and said, "Darling! Something really awful has happened!" It was on a Saturday and I wasn't about to go to the ER! No way!!~!!! So, I just constantly iced it and swished saltwater in my mouth until that Monday. Thank God they didn't break in half! The dentist said that there maybe hairline fractures, and possible nerve damage. I'll go back on January 22nd to see if the nerves are dying. If so, the teeth will have to be pulled. But I have a good feeling that I'll be able to keep them. 


They still hurt, and I've only just now been able to close my mouth. When I eat I have to use my back teeth only. This means every bit of food has to be cut in to tiny bits, then thrown down the ol'gullet.

For those of you that missed the comparison photo I made and posted on Facebook, take a look at this.

I don't know...I think it's funny! I have a sick sense of humor! I'll have you know the swelling has gone down and the two punctures aren't even noticeable anymore.

So in closing on this post; I just want to say again how grateful I am to have you all rally around me. The benefit that's going to happen tomorrow is so touching to me - so many people have come together to come to my aid and help me out with my medical bills and also just to keep living. Thank you to Rebecca Gaffney, Jen and Laura Rogers, and to all the people that have helped to make this benefit happen. So many bands/so much fun! 


https://www.facebook.com/events/721038087915201/

Please go to support the bands! 

NURSE AND SOLDIER-(BOBBY FROM ONEIDA)
REBECCA GAFFNEY AND ADRIAN AUSTIN
AUGUST WELLS
THE ROGERS SISTERS-( REUNION SHOW!)
LOVE AS LAUGHTER
CRYSTAL STILTS
ENDLESS BOOGIE
DJs Bruno, Brad Truax, and Greg Anderson

389 Melrose StreetBrooklyn, New York 11237-








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!