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...


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