Noisy Nora

big time consuming

2009-04-16T18:25:00.010-05:00

There are too many things in this world. Too many choices for us. Too many things to buy and eat. That is how people consume free time- consuming, to make up for their full days of outputting. Maybe it sounds right to balance these things. Except no one does. There's always a portion of people who mostly just consume and then there's the portion that outputs all their life. My perspective of the world is an overwhelming one. I feel like I haven't lived enough to be ready for now. But that's a waste of time to think about. I always seem to save things for later-put them off. But if I keep doing that, I'll never get them done. Things are being wasted just sitting there. Time is being wasted. Time that I could use doing the things that I need to have done. Of course, I could pretend that all time is not wasted, and that all time is special and we are so lucky to have it.

yellow yellow

2009-03-14T11:41:00.004-05:00

Just so ya know, I haven't been all too expressive for about a week now. Here's why. I've been feeling like a sick floppy rotten fish! Yes, I did go to Arizona at the beginning of the week and have whole tons of things to say about that, but a rotten fish doesn't seem to have much flop enough to even say "hello" sometimes. I had a doc appointment Thursday that I was dragged to, and they said if I wasn't feeling better over the weekend I might have to check myself in. I'm trying to avoid that. I've been having weird aches in the liver regions and people who look at me say I look yellow. Yellow jaundice yellow? Something is going on with my liver is all we can figure. If I keep feeling this way, I oughta be checked out by a professional. But for the time being I will just be sipping on water and beet juices. So there's a little magenta in the yellow.

writer's block

2009-02-27T13:05:00.002-06:00

Help me! Help me! Help me!

This message will remain short because I really don't have much to say. That is why I am asking for advice, actually, to cure my writer's block. I want to write more, but can't seem to get started or feel any inspiration for it. Any pointers from all you writers out there? Please do tell!

*This entry is also a good excuse to show off this random bunny photo of a bunny with writer's block.

In-Between News

2009-02-19T16:28:00.002-06:00

I had my monthly scan today. It's funny, I went into it feeling pretty neutral and came out of it feeling the same neutralness. News is, things are still stable and look the same as they did in September. But this time, the plan is different. Since my hemoglobin was too low again to do any chemo today, I didn't. And my doc has decided to give me a month long big 'ol break from chemo altogether. I need to get my appetite back! Goodness! I don't think I weighed this little even in junior high school! I'm just bones. My shoulder blades stick way out and I have chicken little legs. Give me some FAT! My mom even went to the Goodwill to stock up on size 2 pants for me to wear. I have no hiney to hold my pants up! Hopefully my new Goodwill pants won't fit me in a month-they'll be too small, please.

During this three week break of no treatments, you can bet my mom will be doing lot's and lot's of research. It's a whole new opportunity once again to "explore the options". In fact, she has already found a clinical trial to look into down in Scottsdale, Arizona. Looks like we might be flying down there soon to check it out. I'll keep you posted on that.

In the meantime, try to think of the fattiest foods you can think of and tell me what those foods are. It's best if you can think of things that taste good. I love cheese, you know.

Valentines

2009-02-16T13:13:00.004-06:00

While all of you were out sipping wine by candlelight with your sweethearts on Valentine's Day, I was at home slaving away at my Valentine-making factory.

texting and trespassing just don't mix

2009-02-05T20:01:00.007-06:00

I've discovered a new T.V. show that I like and think is funny. The two main characters of the show are Bret and Jermaine. After watching a few episodes this afternoon, I took a sort nap and woke up feeling delirious, as expected. I lied there in my delirious state of mind and came up with my own "Flight of the Concords" scene. It's not all that funny, though.

Bret wakes up from a weekday afternoon nap completely delirious. He walks out into the apartment living room and there's a girl sitting on the couch grinning at him. She has braces. He says,

"Wha. Whaaat?"

The girl keeps on grinning in her kelly green polo shirt and short black cropped bobbed hair. She speaks but it is hard to understand because her accent is Korean. Either that or because she has a retainer that keeps flipping into view as she talks. But she keeps saying,

"Yeah. I was texting."

"Texting wha?" Bret responds.

"I was texting."

"And wha were you texting?"

She starts saying something about student housing, but then a tall dude wearing all white duds with a red rhino on his shirt and some gold chains walks in with his arm around his girl.

"Yo man. We just here 'cause she trying to find us a place to stay, man. We just wanna make out, but them folks won't allow us at student housing."

So they heap up on a chair and start making out while Bret picks up his guitar and starts playing a song about trespassing and text messaging and how they don't mix. Then Jermaine appears wearing an orange dashiki and his hair is braided into corn rows. He sings back-up to Bret's song.

Now remember. This was thought up at a time when I was more unconscious than conscious. It's not very funny, just very odd.

2009-01-21T23:05:00.006-06:00

I had a most wonderful acupuncture appointment today. What is so great about these appointments is that they are not just acupuncture alone. My acupuncturist is also sort of like a therapist in that he has incredible intuition. He has a manner of speaking with his words that is very poetical and a delight to listen to. He also has a unique sense of humor and he is great when his giggles about things. So it is doubly delightful to be at his appointments.

As he placed the petit thin needles in various points of my chest, arms, legs and feet, I asked him about his last name. He went on to explain that yes, he is Polish, like me. When he went to Poland to meet relatives of his for the first time, he said he got a real kick out of recognizing some of their traits as his own. His first cousins all walked around like pigeons, slightly slouched in the back and bobbing their chins out. They also had a tendency to want to interrupt conversations. When he walked around in the city of Krakow, he noticed that a lot of people bobbed around like pigeons and had a slight grouch-frown face. He said he walks around like that to. Now I know why people ask me sometimes, out of the blue, "what's wrong? Why are you frowning?" to which I say, "what? I'm not frowning. I'm perfectly fine." I asked if Poles have piercing blue eyes like my mom, and he said, why yes, that seems to be true, too. He himself has very blue eyes.

Back to the appointment . . .

The main organ he focuses on is my lungs, because that is what has been causing me the most grief lately. He said as an organ, the lungs have a sort of characteristic as being organizational and wanting to be tidy and clean. He told me to imagine a library with all the books tumbling off the shelves and loose pages flying about. Right now, there are a lot of excess tissues in my lungs and there is little room. They are untidy and clogged with extra tissue. He told me to, when I meditate and do my breathing exercises, let my lungs know that they do not have to feel responsible right now to tidy up. It is too much and too overwhelming for them to worry about that extra work. It is the chemo's job to tidy things up and hopefully dispatch all that extra tissue swirling around.

As I lied on my stomach so he could place needles into the lung points on my back, he brought up another idea. He knows how the forest is a place I think of when I am feeling anxious. I think of being in the forests near the cottage or in British Columbia (Saturna Island especially!) often when I am am feeling out of sorts. He is the first person I told about my dream of the old woman in the forest in the mountains, meeting her old bear friend. So he told me to place a tiny drop of pine scent essential oil in my palm and breath it in while I meditate and focus on breathing. He senses that I like the feeling of the crisp, cool pine air I breath deep into my lungs when I am hiking or cross country skiing in the forest. You can be sure I will be spending a lot of time in my forests now!

Ecstatically ECSTATIC!!!

2009-01-15T17:44:00.002-06:00

Now I can really say, YES! REALLY (??!!???!!!????!!!!) Well, YES! It is! It is Good! My CT scan I had today is what I mean! I couldn't be more ecstatic, or, rapturous (which is another word for ecstatic, according to the thesaurus). This is what it is to be happy! The low down (or should I say the "high up"?) is that things are still all stable. This meanings really nothing has changed since September and that's four months. So the plan is to continue on with chemo, but we're adding a new one to the "cocktail" that has some potential to start shrinking stuff, or so thinks my oncologist. I don't know what to do with myself tonight. New episodes of "The Office" and "Thirty Rock" are on, but I feel I will be too distracted with happiness to keep my seat. I could work on my rug, but same thing, my rumpus will just want to jet off the couch. I guess I'll dance. Stevie Wonder would want me to dance, and so I think I'll dance to Stevie Wonder tonight. I won't be taping myself dancing to Stevie Wonder for YouTube or anything, but you can imagine it if you want.

2009-01-13T11:41:00.002-06:00

I always, always get real antsy the week leading up to a CT scan. But this time it is more than usual. I think it is because in the past, mostly the news from a scan has been less than desirable, and so that is always the news I expect. Since I have been given little glimpses that the treatment I've been on lately might actually be doing something this time, I have more of a reason to feel more hope about the results. So this makes me all the more uneasy about it. Should I hope more this time? Or does that just lead me to be more disappointed when the news comes out bad?

But just think how different my life could change all of a sudden if the news were good! I've been waiting three years for good news!

Well I'll Be Darned!

2008-12-27T13:14:00.003-06:00

I'm back already. And this is because I feel almost entirely opposite as I did the last time I checked in. And isn't it amazing! I think a bit of holiday cheer with my wonderful family, looking forward to seeing old friends who are in town, eating marvleously . . . and . . . my best x-mas eve gift, blood from a Type A positive donor! Thank you donor, where ever you may be! You have made worlds of wonder for me! I feel like the old self, the one I like, is back in me again.

Here's what happened. Feeling lousy upon waking on X-mas eve morning, I had to really drag myself out of bed that morning, panting, to get myself to the clinic for chemo. Chemo for X-mas! The clinic and the nurses were all jolly enough, but I sure wasn't, huummmpiff. My oxygen level was really scary low, like in the early eighties. I was so sore and weak all over. I asked for extra fluids because of how dehydrated I've been. When my blood lab results came back, the low level of hemoglobin was low enough for another blood transfusion. My mom was overjoyed because she asks for this every week and for some reason they never thought I needed another blood transfusion. So after my chemo was done, they sent me upstairs to the blood transfusion floor where it is like an old hospital and very quiet-like a secret infirmary. Everyone gets their own room with a bed, bathroom, window, and T.V. set. I settled in and the nurse-so kind, too- brought in a big floppy bag 'o blood for me. The blood was the darkest, richest maroon ever. They had a movie list and mom picked out "Office Space" from 1999- doesn't seem like that long ago, but you should check out how old school the computers were back then, and internet was still hardly used yet, too.

Another nice surprise was that a hemophilia patient has been donating turkey dinners every X-mas eve to the blood transfusion floor for several years. So the nurse brought in steaming turkey dinners with real mashed potatoes for me and my mom to eat. I looked over at my mom eating her turkey mash and watching "Office Space" and realized my bag of blood was slow dripping right next to her head. I asked her if she thought it was weird, but she said no, and so we continued eating and watching.

Later that evening, we had my dad's side of the family over for dinner, but I was so conked out on Benedryl and drugs that all I could bear to do was sleep, pretty much. I could hear the chatter downstairs, but I couldn't manage to join them for long.

The next morning is when the miracle started! I got out of bed very willingly for the first time in weeks- and not just because I had presents waiting for me downstairs. I had energy like no way nooh how! I even skipped around for a while without the darn oxygen tubes up my nostrils! I felt like me! The me I like! I had a great morning with my folks, sisters, Emma-dog and sister boyfriend. We all seemed to be doing great.

Then it was time to rest up a bit in prep for the BIG family (mom's side) who would flood the house in the evening. I was a bit nervous, I have to say. i hadn't seen people in a while, and I knew how negative I have been, and sickly, and I know that I look very different these days- skinny bones me, and no hair- including eyebrows and eyelashes, which really contribute in a large part to a person's facial features. I worried about whether I should try to doll myself up to look super silly (since dolling myself up to look any good, like, perhaps pretty, would be a ridiculous idea) or just go naked bones and not give a umpff. My dear cousin had been very thoughtful earlier this week and brought over a sparkle sweater and some false eyelashes. I tried out the eyelashes and they were so Tammy Faye and obstructive to my eye sighting that I just couldn't pull that off. I'm not so good in the dolling up department when it comes to makeup. But I did wear the sparkle sweater. Pizazz. When people started arriving, I felt no reason to feel awkward at all. These were all people I have known and loved my entire life and nothing had changed. I laughed and talked with everyone like always, with no flinching flinchings what-so-ever. No one looked at me weird, either. For those hours everyone was here, I forgot I had cancer, and it was the most wonderful feeling to have had. My new blood carried me all over the house grinning like the old idiot that I like.

So there, what a difference. And I'm still feeling the effects right now this very minute!!!!

My mother, my father and Hannah have been taking very very good care of me.

2008-12-21T11:41:00.000-06:00

drugs are no good

2008-12-18T12:59:00.004-06:00

There's too much going into being a cancer patient. It's too difficult to keep up with it all and there's no rewards. I'm starting to lose it. I take all these drugs now- drugs to get the cancer out, but then along with that, drugs to try to make me feel normal since the cancer drugs make me feel like I've died already. Drugs to cure the pain and aches, but then more drugs to cure the constipation I get from the drugs that cure the pain and aches. Drugs to keep me from getting other infections, like shots to boost my red and white blood cells, or anti-biotics to keep me from getting pneumonia. Shots to give myself so I don't get blood clots before it's too late. Drugs to keep my brain sane, knowing that I have a chronic and terminal "cancer" and all. Drugs to make me eat- everything tastes like grainy metallic paste. There's a headache. Drugs for headaches because all these drugs, well, they mess with your body and head and make you loopy with headaches. Drugs to keep the incessant cough and tickle in my throat from making me hack everytime I want to say something. How did I ever get into this? Yeah, so I'm more than fed up with this. I wish I could hibernate from it all and come out again brand new feeling, with no tubes in my nose, and eyes that have eyebrows and eyelashes so I don't scare the kids so much with my sallow Gullum-like glower. I'm beyond the sob my eyes out now. It's just glare at things, hold my body tight together so it doesn't fall apart and break and try to read or something- even that tastes bad, though. This unlucky capsule is where I have to live in day to day until a miracle let's me out. This all sounds like Gothic sludge, I don't know what else to say. I can't even see that the sun today is it's usual color. That's why I am apologizing now for putting a major hold on the blog-writing for now. No one wants to read a blog like this! And this is what I'm afraid it's going to be like for a while. Go check out fun, inspiring websites, like boingboing, or something or other. Don't worry, it's the same me writing this awful slop, but I just don't want anyone to have to drudge themselves into it. I'll come back later, maybe next year, even.

Irritations and a little pleasure, too

2008-12-07T13:09:00.004-06:00

I have not opened my email for days and days, and now I have this big fear of doing so. I have instead cut myself off of communication (which I am really good at doing sometimes) and crawled under a big heavy blanket, still attached to the oxygen leash, of course. I like to be in touch, yes, but I have an anxiety of phone communication for some reason- I've always never liked it. It's always seemed a waste of long periods of time. The phone is for quick plan-making, not ceaseless, never ending jibber because there's really not much to talk about. If you wanna talk, come and talk in person, is what I say. Mind you, on the other hand, phone calls from a long lost friend who I physically can't see in person so often are always lovely. I won't bite any one's head off for calling me on the phone, since that would also be physically impossible, wouldn't it? Now I've really done it, no one will call me 'cause I'm nasty or visit me 'cause I might bite their head off. But email, that's communication, except when I let it pile up over days. And I so much want to respond to everyone, which could take three hours or more today, time I have and shouldn't complain about, yes.

Can't you tell that I woke up a lump of a grump today? It's really true. I slept nearly until noon, which my mom has never let me do since high school. My dreams were too heavy to come out of. My aches and pains were pinging too much. Overall, my 99% level of sleepiness was too much to come out of to leap up and greet the dawn. I would be in my mostly asleep state and hear my mom's loud, authoritative clogs marching around the wood floors of our house and beg for them to not to come towards my door. Every fifteen minutes or so, she would clog up to my bedroom door and tell me to get out of bed, but I just couldn't rationalize why that would make any sense, since it felt so good lying in the warmth and comfort of my far away, obscure dreams. So the morning went like this- fifteen minutes of peaceful bliss and uninterruption to the dreaded sound of loud clogs and her banter, "Get UP! It's almost NOON!", back to fifteen minutes of peace, and so on.

A truce was made when she brought up a miracle custard and served me in bed, being I was being such a brat. "And you can go back to sleep after that for all I care," she said. I ate the custard, which is miracle because it was all I really felt like eating and it tasted splendid, and then let Moe-cat like the bowl. Then I turned on my heating pad and toasted awhile while listening to "A Prairie Home Companion." I only ever listened to this show in the past as background noise that my folks had turned on in the car. The voices then were all like how the adults talk on Charlie Brown, with Keillor's being very distinctive in tone, of course. But this morning I listened with undivided attention and he did indeed tell a story about ice fishing on Lake Wobegon and the annual church lutefisk dinner gone bad. There was some nice Gershwin music, played on the piano and sung, as well, and a sad ballad of Tom Wait's, sung by someone else, a woman, in fact. During this, my mother would intermittently interrupt me by bringing old junk of mine into my room to add to the junk mountains in my room. She has decided to clean out the attic, part of which is a small room with boxes of my old apartment stuff. Why she decided to open those old boxes and take out junk that I don't need right now and that won't fit in my small junk-heaped bedroom I don't know. Maybe she thinks these old things from my free past will be a pleasure. Really, though, it makes me groan to have more junk to add to the heaps. Pleasure, right now, is coming from listening to "A Prairie Home Companion" on the radio while toasting my back. It is a comfort, just like how my pillow is a comfort.

So now you know what irritates me, and a little bit about what I might call a pleasure. It will be a pleasure when my mom finally gets those slippers she wants for Xmas, and she won't have to clog about the house. I will more likely greet her with a smile, then.

hey you kids

2008-11-27T14:39:00.002-06:00

Huh. I didn't realize how strange that last blog entry was. Oh well. I'll leave it there anyway.

But here's something different, and it still comes from my very own strange grey matter. This is all very pleasant, though. It's from a dream I recall from last week. I dreamt about Bomma. For those who don't know, that is what the Parker cousins called our Grandma. I dreamt that I came home and Bomma had left a message on the answering machine. It was very Bomma-like. My mom got a kick out of it when I told her about it. Bomma said, in her way, "Where are you kids? Where are we going to have Thanksgiving this year? Have you kids figured that out yet? I thought I would get one of those turkeys on sale at Cub."

She hasn't called back since, but I suspect she might call again soon, because good heaven's, what on earth will we do for X-mas? Ham? Lamb? Beef tenderloin?

Rugging in November

2008-11-23T20:44:00.002-06:00

I'm working on a rug and listening to a jazz recording that my dad has been playing a lot lately- always when I'm working on this rug. So since he isn't home and I'm about to work on this rug some more, I've got to have the music, too. The music is very 1963 movie/New York City. There is one song, the third track, that is of a melancholic note, and about a third of the way into the intro, a flute gives it more of that sixties element, or shopping in the carpeted frozen foods section at Byerly's element- it does take me right there, too. Wait, isn't all of Byerly's carpeted? Maybe jars of pasta sauce don't break as easily when they fall, but when they do . . . .

Anyway. This sure is pleasant. I'm making a memory right now, which makes me think of a thousand little memorable moments right from the one I am in the process of making. I think of rainy November nights in my old studio apartment in downtown Vancouver- big windows facing down onto the dumpsters where the bums dug in the rain. (I once threw a banana down, but the bum was offended or something and didn't want it).

I think of the shabby Steven's Square apartment in Minneapolis of my first-ever, jazz-loving, conceited boyfriend- same dark rain, but looking down onto the street near Nicollet where a cop car light was whirling.

I think of my old high school friend who lived downtown St. Paul in a tall, tall apartment building with her mom. Same type of dark November night, but it was a Friday and we were trying, as highschoolers, to convince the bartenders at the Artist's Quarter on the corner to let us stay just for the music- really, truly, we just wanted to hear music. We were not there for the booze or the old guys older than our fathers.

Good Heavens! Here I've dug up this memorable set of moody memories and suddenly the music goes to church! Abbey choir of some sort. What is it? "The Rose Ensemble. Really lovely, but entirely different mood. Ahh, they sing at the Basilica in Minneapolis. Now maybe I should watch "Elizabeth" or something. I guess it's good to know I still have imagination enough to take me out of this house, away from the now. Who says it is no good to live in the past?

Old Woman and the Bear

2008-11-11T17:05:00.003-06:00

Yesterday I had chemo, the rougher variety, the mustard gas one. I had been nervous about it all last week- mostly afraid of the uncomfort, the potential vomiting, losing my appetite and feeling overall lousy again. They gave me a lot of drugs that made me feel drowsy and keep me from throwing up. When I got home, I wanted to watch something pleasant on T.V. so I watched an episode from "The Planet Earth" dvd about seasonal forests (the fourth disk in the series). It starts out in the taiga with footage of a moose and a lynx. It also looms in on the Northwest coast forests, which made me nostalgic for British Columbia. I fell asleep during the program and when the program finished out it went to the main menu screen which played the same peaceful, less-than-one minute orchestral piece over and over again. This pleasant melody got into the background of my dream. My dream was beautiful, too. It featured an old woman with long, bright white hair that was loosely piled on her head. She was very tall and wearing a long heather gray sweatshirt over jeans and black rubber galoshes. She was hiding halfway behind a pine tree. It seemed she was all alone in a forest in the mountains and there were melting patches of snow here and there. The sun was very bright, and it seemed to be about mid-day and springtime. She was looking across to another pine tree where a tall grizzly bear was halfway hiding behind, standing on it's hind legs. They were looking at each other for a while, and then the woman slowly stepped away from her tree and moved towards the bear. The bear did the same. The two walked towards each other and the woman had tears in her eyes. She hadn't seen her old friend in years, and she knew it was her friend from long ago. They had found each other again. It was such a nice dream!

more about food!

2008-11-09T20:45:00.002-06:00

Every day after work at a job I held one summer, I would dream on the bus ride home of the block of cheese in my refrigerator. As soon as I got in my door, I would pick up into a run to the refrigerator. I would shred of the Saran wrap from the day before, grab a blunt knife, and slam that cheese block onto the cutting board. As I sliced, my jaw would lock and I would salivate like a Pavlov dog. As soon as a slice of cheese was in my mouth, my jaw would function again, my heart rate would slow down again and I would really taste that cheese. Soothing a ravenous appetite is such a joyous sensation. So, what a shame and uncomfort to have to eat without an appetite for what you are eating. Or worse, to have no appetite to eat anything at all.

I love to eat. I love to just think of eating. One of my favorite hobbies has been to read cook books- no need for pictures, just reading the recipes gives me a rush! I borrow cook books from the library and copy the recipes by hand on to recipe cards. As I hand write each recipe, it is like I am actually tasting this or that dish- I taste each ingredient listed one by one. Then I toss those same ingredients together with the olive oil and garlic in a sizzling hot pan and taste those same ingredients all in a different way.

Before I knew I had cancer, I ate considerably well, as I was raised eating a variety of foods, mostly health consciously. But I also didn't have a stopper to eating deliciously "bad" foods, either. In college, when I lived in Canada, I ate a considerable amount of such "bad" delicious food. It was a habit to eat very late, when my appetite flared the most, and alcohol sometimes tended to add to the effect. I lived downtown near a wild, raucous street that served food to the after-bar crowds. Appetites were unstoppable, and the foods were just what we wanted most- ninety-nine cent pizza by the slice, take-out Chinese, swarma and deep-fried samosas, and poutine, which is a Canadian specialty of French fries smothered in gravy. All of this may sound like what you would find in a pig's slop bucket, and it is, but believe me, at the time between two and four AM, there could be nothing better.

That was before cancer. Everything changes when you get cancer. You think of everything differently and you become overtly hyped-out concerned about everything you do. For me, of course, the way I thought about food changed drastically. I strongly believe now, with much common sense, that diet plays huge in health and recovery from disease. How could it not? What we put into our bodies accounts for so much of what we are made of and how the body maintains and repairs it's self day to day. So, naturally, my diet became a huge obsession, and I constantly want to know what is good and what is bad for me to eat.

I turned from reading pleasurable fiction novels to reading books about nutrition and diets. I've read about and tried such diets as the Paleo diet, macrobiotic diet, all vegan diet, and I have even tried the raw food diet, which is just about impossible. The raw vegetable based diet appealed to me because of the miracle stories I kept reading about how people had rid their cancers from the raw vegetable diet alone! People hold great claims on such diets as the Hippocrates diet, of the Gerson therapy. I wanted to believe these stories to be true so badly, especially since none of the twenty or so chemotherapeutic drugs have done a thing for me within the past three years I've had this cancer. But a big part of me can not help but be skeptical about it. All the same, I took on certain elements of these drastic diets- it could only help, right? This meant I would eat fruit in the morning, but nothing else, because you never combine fruit with another food! Vegetable juices throughout the day consisting of kale, spinach, chard, dandelion greens, beet greens, burdock root, parsley and sprouts. Very bitter! NO meat, NO dairy (that means no beloved cheese) and certainly NO sugar- cancer cells thrive on sugar. I was really starting to limit myself, and from the foods I had always enjoyed eating so much. Eating wasn't fun, it was a chore, and I only did it because I had to.

Lately, eating has become very difficult for me, due to the super toxic chemotherapy regimen I am now on, of which one of the drugs has the components of mustard gas! Think mustard gas and try to eat a broccoli stir-fry at the same time. Think of when you had the flu and a well intentioned caregiver was trying to force you to just eat, just eat something! This is how I feel now. I know how important it is to eat, but just thinking of it makes me have strong gag-reflexes. Drinking my all-green vegetable juices at this time is out of the question!

It is strange, then, that there have been a few bouts where I actually could imagine myself eating from a spare menu of choices. These food items have cheese in them. Mac '' cheese spirals, string cheese, or a spaetzle with cheese casserole. The other night, however, after trying to eat a healthful bowl of brown rice with tofu and edemame, all I had a hunger for was a cheeseburger and French fries, and they had to be from McDonalds. I could imagine exactly how the thin cheeseburger would taste, with it's tiny diced onions, thin meat patty, three ripple dill pickle slices, a little mustard, a little ketchup, a rubber slice of cheese, and, if I was lucky, there would be a single greasy thumbprint on top of the bun from whomever wrapped the little burger into it's pale yellow paper wrapper. I thought about how this burger, and it's accompanying French fries, would taste for three hours after attempting to eat my rice bowl dinner. Finally, I revealed my hankering to my mother, who laughed and said she would take me to McDonalds to put an end to it. It was about ten o'clock PM when I finally sat down to eat my dream food, and my mom was just so happy to see me eating like a normal person.

2008-11-02T12:38:00.003-06:00

This is Caitlin's new kitten, Henri. I feel partly responsible for him. What I mean is, Caitlin was over here last weekend and after the usual "How's it goin's" I asked her if she still wanted to get a kitten to keep Emma dog company. Caitlin looked suddenly a little sad, a little distant, and said, "Yeah . . . I can't afford a kitten right now though." Then she went downstairs for a bit and left me up in my room where I had to sit for a while to wait for my Niagra Falls bloody nose to let up (that's a different story, though). When Caitlin came back upstairs after eating a muffin, she said, "Well, I'm going to the Humane Society now . . . just to look." We know how hard it is to go to a Humane Society "just to look" at kittens. Especially when there is a kitten there like little Henri. He is an orange tabby, and they tend to be of the silliest company. Very loving to you, as a person receiving the love. And the purrs never stop. He purrs loud, loud I am told.

Now Emma has a new friend to follow around and be curious about. And it seems that Henri will warm up to her and they will be really good companions.

2008-10-29T14:30:00.001-05:00

pampered people, pampered pets

2008-10-21T15:51:00.003-05:00

Here is a picture of Auggie the cat after he had been stuck down in the basement.

The other night as I was going to sleep in my bed, Auggie plomped down with me. He started purring by just being there- I didn't even pet him. He is very loud when he purrs, like an engine. We could both hear in the distance my mom scooping out his litter box. Auggie's lazy big head perked up from his paw rest and his ears stuck up wide to get a better listen. Then he rested his big head back down onto his paw rest and purred even louder. He was one satisfied cat. I love how pets know when they are being taken care of and they really love it and toast in it. I think it's alright for human's to be like pets- to let other human's take care of us and then bask it up, no regrets. Just appreciate it.

The darn thing is us humans always think we have to return the favor- but you don't always have to.

So much to think about!

feeeling lousy

2008-10-19T18:04:00.003-05:00

Here's another complaining message. First I will say that I have never really experienced the "typical" chemo super-sicklies, like what you think about when you think chemo, and I've tried an awful lot in the past two years or so. For the first time, I think chemo has managed to really dunk me under. The narcoleptic fatigue I had last week was annoying- like I would be sitting here at the computer, for example, and then wake up disoriented because I had unknowingly been snoozing sitting up (like how horses and cows sleep!) for who knows how long? And the screensaver on my computer would be going. When this fatigue is combined with nausea, well, what can I say but ick, ick? Then I just can't imagine doing anything at all! No reading, T.V., music. Everything is a huge awful over-stimulus for me. The worst part is my appetite is none. My parents ask me what I feel like eating and it is a headache even thinking of food. The smell of food takes me over the edge- especially sesame oil! But I looooooove to eat! The only thing I've really felt like eating is string cheese! Even swallowing pills makes me gag- or drinking water, for that matter. This morning I air-barfed several times. Then I sat up in my bed and stared for what seemed like all day.
I think my day of staring and feeling really sorry for myself is starting to let up. I can make a short list of things that I find somewhat appetizing, string cheese (of course), chicken Mcnuggets with honey (which I have not had in years), fizzy water with cranberry juice mixed in, spaetzle casserole from The Black Forest and, actually, the turkey pot pie my mom is making does smell really good. Notice the lack of vegetables in the above list. Not much color, either.

never mind that

2008-10-11T11:18:00.003-05:00

It's been rude of me to keep people hanging since last Wednesday when I brought the bad news to this blog. But since then, the things are tilting back towards good again! It turns out, after talking to my oncologist again about the scans, the radiologist who had originally made the report had not compared the right scans. He compared my recent scan with a scan from June or July and so he thought the lung spots had grown. But that is not the case when the recent scan is compared with the last scan I had, which shows stability. If this wording makes no sense, pay no attention, just listen to this: the scans were not rightly compared and in truth the lungs have been stable for two months. So I get back up and continue. Splash!

Not so fast

2008-10-08T11:09:00.005-05:00

It's amazing how quickly news can change- and so drastically. It's like being in super air conditioning cold and then hopping off the bus and being hit by hot hot 99 degree heat. In your face. Really really good news can make you dumbfounded just as much as really bad news can. I feel smacked. I still don't know what to think, or how to think about it. Yesterday I was gleefully bouncing off the walls and telling everyone I know that news is good, and my chemo was booting out the cancer. But that was yesterday.

It's so hard to tell this bad news. I had another appointment with two radiologists early this morning to go over my scans again to see if the Cyberknife procedures I had done this past spring worked- they did, which is good. However, what no one has ever told me is that there are tumors near my right kidney. They have been lurking there all summer and no one noticed or, if they had, they never brought it up with me. So that's a new surprise. Also, my oncologist yesterday did not do as thorough of a scan reading, and it appears that the lung tumors have been progressing. This is all such extreme opposite of what I was sailing on yesterday, and telling everyone. I'm still taking this in, and have yet to talk to my oncologist about it. So what happens now I don't know. It goes to show you can't always, and never should, just rely on one single source for information like this. There are many other doctors out there, who all have such different approaches. So that is what I am looking forward to now.

I must also say that I love, LOVE getting all these heartfelt emails from everyone. I most want to respond to everyone, too. But right now I'm so overwhelmed, I only feel like communicating to everyone in one single message for now, in this case, through this blog entry. So if I don't directly respond to wonderful email notes to me, please, please know that I am thinking about the lovely ones who have written them. In time, I'll get more energy and gump to write to people more. More hemoglobin, please! And thank you . . .

Good, no, GREAT news!

2008-10-07T17:48:00.002-05:00

Oh how to say it? Usually bad news is hard to tell, but now I'm finding it hard to tell good, extraordinary news! I'll just say it! No need to get fancy! My dread of the past few weeks has come to an end. I am at a new turning point in this whole unpredictable, unFAIR situation. Okay, here it is, I'll just say it.
My scans were good! The tumors in my lungs are stable, so for once in my life, chemo is working! It is a miracle, really. This has never happened, and frankly, I really thought it never would considering all the different chemos I have tried (almost twenty, I think!). My doc says this is good, but he wants them to shrink! I say, ALRIGHT! Now I can rest assured that all this feeling like a sick lumox is worth it. On Thursday I'm going back into the clinic for a red blood cell transfusion so I won't feel so tired. Things are looking up! I strongly believe a big part of this miraculous news has been made possible by everyone's good wishes, prayers, and thoughts. Boy am I lucky for that.

Birth of Nora Day

2008-10-04T14:18:00.000-05:00

Thanks for all the Birthday greetings, folks! I am having the best of days!

Look who I found! Again!

2008-10-03T19:43:00.002-05:00

Big Lumox

2008-10-03T19:25:00.004-05:00

I guess I've really checked myself out of my blog life lately. Lack of motivation, any sort of creative thought and especially eeennnnnnn-aaaaaaaarrrrr-gggeeeeeeee (energy) are the main culprits. I have been a big lumox. I never knew about the word "lumox" until I was a teenager. I remember learning this word clearly. It's a great thought to think back to. I was sitting on a fold-out beach chair at my cottage down by the lake. It was a weekend when my cousins and second cousins from next door were all out enjoying the hot sand and blue sky, the jet ski's out on the lake in constant hum-hum zzzzzz hum. Little blondie Doug, about six years old, his relation to me I'm not sure what it would be called (2nd cousin once removed or something or other) was busy busy playing in the sand with his buckets. He wanted his grandma to go swimming with him and kept bugging her to. She was, like me, completely luxuriating in the hot sun, eyes closed, no chatting. When she wouldn't leap right up and dive in the lake with little Doug, Doug said, "ohhh, Grandma, you big Lumox!"

Well, I still don't feel like saying anything about my past week. What is there to say? I've just been a big lumox myself, is all. And I guess I still am.

and,

2008-09-23T17:55:00.002-05:00

there are big, big bunnies.

There are big dogs,

2008-09-23T17:38:00.001-05:00

There are big dogs,

2008-09-21T13:48:00.002-05:00

I never wanted this blog to be a chore, or a pain in the arse. No pressure and it will all come out and flow more freely. This all seems so easily said, but when you're exhausted and in pain and all the other little pings and pangs of discomfort (tickles in the throat, too cold, belly ache, itchy head) it's not easily done. I've let myself put it off for a long time now- I don't know how many days (or weeks?). To fill in briefly, I went to Durham, North Carolina about a week and a half ago to have my liver dumplings fried away at with tiny nano particles of radiation. They did their job and it went well- should just be lot's and lot's of dead tissue there now! I stayed in the hospital there for two nights and I didn't need to use that pain pump-thing they give you to administer morphine at one's leisure all but once. The nurses all called my "honey" and "sweet thang", as is their ingrained customary way down south. The hospital was uncomfortable and served horrible food, as is typical, but when I got out, it was all the more relieving. I was so hung over from drugs that I didn't feel like doing much in the charming little city of Durham- City of Medicine. My ever-so-patient dad spent time lolling about with me at the hotel. It was 94 degrees outside much of the time, so neither of us really felt like being outside anyway. But at one point, we did get into the rental car and cranked the air conditioning and drove around. My dad has my grandpa's GPS, so we were able to do this with no fear of getting lost. Both me and my dad would never have done this otherwise. So, we drove over to the old Duke University campus, which is beautiful. We also found an old bungalow neighborhood with very wide-trunked, wide-leaved trees arching over the residential streets. The bugs (many cicadas, I would assume) were ten times louder than I ever heard them at my lake cottage in Wisconsin. There were very few people on the sidewalk- TOO HOT! At one corner, however, the fire hydrant was spewing water out for some little girls with ruffle-bottom swim suits. They were trying to collect all the water in little sand buckets. After we had figured we had circled around every street in that neighborhood and were assured we hadn't missed out on viewing every single charming bungalow or magnolia tree, we decided to GPS ourselves and find us a place for some refreshment. You can GPS any common chain business and it will direct you to the nearest one. We GPSed CVS pharmacy and Dad got a cream soda and I got one of those vitamin waters. It was pink.
The following day was traveling home day. I had to borrow a wheelchair at the airport because I was too exhausted to walk. It was a real relief to be back home under my own sheets again.

Going down South where they call me "Honey"

2008-09-09T09:00:00.003-05:00

I'm headed off to Durham, North Carolina this morning. Just so you know. I'll be having an unusual procedure done at the hospital there. In my words, a radiologist will pierce a tiny hole in my groin and send a small catheter/tube up through an artery and into my liver. The tube will deliver tiny nano-particles into the liver vessels that feed the nasty tumors lurking in there like dumplings, and clog those feeding vessels up, up, up so the dumplings die, die, die. That takes care of that. What about my lungs? Any ideas there? According to the CT scans, I have galaxies of tumor speckles all over them. Couldn't I just take an x-acto blade and scrape them off? That sounds so good to me right now. ahhhhh. Well, we shall see what the chemical poisons they inject me with do. That, and my magenta juice and all the other vegetables I stuff myself with every day. Are there any tasty ways to eat cauliflower?

Housebound!

2008-09-05T13:28:00.002-05:00

So it's been a few weeks now since I've had to rely on oxygen from a machine. I have to wear one of those nose-things you see people wearing in hospitals. Mine is attached to a long tube so I can walk around the house, dragging the long cord around everywhere with me, like a I am a dog on a leash. I trip my family members with it. I don't always need it, because sometimes I sit around without it. But if I walk upstairs, for example, I have to stop and sit on the top stoop and pant like a dog. It would be so nice to be able to just run out of the house and get in the car and drive away. I guess that's how Emma Dog felt when she ran out the door like a stallion grey hound around the neighborhood and we would just have to wait for her to eventually run back home, sometimes a few hours later, or because someone else found her and brought her back. So me and Emma share a certain affinity right now. We're both on leashes when we don't want to be, we're housebound, we desire to run fast as the wind without stopping. How much longer I will be living this way is hard to say, really. But let's hope not for too much longer. Emma, give me an Emma-huuuug.

Beets-Magenta-Marimekko

2008-08-31T10:55:00.006-05:00

In an earlier post, I described a beet juice drink that I love. I said that it reminded me of Marimekko. But the two, beet juice and Marimekko, seem very out of context from one another. Let me explain my strange little headworks. Marimekko is a Finnish design company that made big headway in the 1960's with their bold prints used on textiles. They made and still make clothes, bedlinens, curtains, upholstries, etc. There is one print in particular which is very popular that has big bright magenta flowers all a-burst. Even when I think of the text spelling out "Marimekko" in my mind I think "magenta". So, beets-magenta-Marimekko.

Good Lickin's

2008-08-29T09:56:00.004-05:00

Me and a friend of mine (in Canada) have a little notebook that we send back and forth with stories and notes in it. I just got the notebook back in the mail from her this week and looked back at a story I had written last November. It's entirely gross and entirely true. Here it is.

Last Sunday my folks went out for the afternoon and I stayed home. I settled in for a nap. Before mom left, she told me to do her a favor. She said, "When you hear the timer go off on the stove, could you turn off the burner and put the lid on the pot?" I knew she was steaming a cow tongue we have had in the freezer for ages. She grew up eating tongue and tried to make us kids grow up eating it, too. We wouldn't have it. Tastebuds on tastebuds just isn't pleasant. So I tried to rest without passing out because I had to be attentive for the timer. The whole while I smelled the tongue steaming. After a few hours, the buzzer went off and I leapt downstairs, turned off the buzzer and put the lid on the pot. Then I went all the way up to the attic and poked around on the internet for a while. The rancid smell was getting worse and stronger- the steamed tongue, that is. I didn't really think much about it, though. My folks came home and I heard them come in downstairs. I didn't feel like talking to them. I heard my mom yell, "DAMN! NORA!" and that's when I realized I forgot to turn off the burner. That damn nasty tongue had licked up all the water in the pot. I ran downstairs. "I'm sorry! I'm sorry! Dreadful me!" Mom forked the tongue, about as big as a size 7 women's shoe, and plopped it back in the pot. It was gray. So sick. Mom said, "Well, you know, maybe it's okay."
At dinner I had to watch and listen to them smack their lips eating the gray, fleshy tongue. They would not dare offer me a piece.
A few nights later, I had left-over soup and there were little gray chunks in it. My mom said it wasn't tongue, but it's totally something she might do. I don't think it was, though, because there's still a Tupperware container labeled "TONGUE" in the fridge.

Eat Up Your Beets!

2008-08-25T18:25:00.003-05:00

Earlier this summer, I decided to try a light detox for my poor liver. I found a recipe for a juice that I was to make and drink every morning first thing when I got up. The juice is called "Beet Juice Express". Beets are a good liver cleanser! Unfortunately, although I do love beets either cooked or raw, this juice was not so lovely.

Here is the recipe:

Beet Juice Express

5 medium carrots, scrubbed well, green tops removed, ends trimmed

1 small or 1/2 large beet, with green top, scrubbed well

1 cucumber, scrubbed, or peeled if not organic

2 stalks celery with leaves, scrubbed well, ends trimmed

1 handful parsley, rinsed well

2-inch piece ginger root, peeled

Bunch up the parsley and push it through the juicer feed tube with the carrots, beet and beet greens, cucumber, celery, and ginger. Stir the juice and pour into a glass. Drink as soon as possible to maximize the nutritional benefits.

Ewwww! Bitter!

Then I found a glorious recipe for a beet juice that is a magenta miracle. It's like drinking Marimekko out of a glass.

I'll call it Marimekko Miracle

2-3 tart apples, washed, sliced, NO seeds (they are poisonous)

I cup frozen raspberries

I small beet or 1/2 large beet, scrubbed, sliced and diced

Juice the apple and beet slices in the juicer. Add juice to the frozen raspberries and add a few ice cubes if you want it slushy.

Ahhhh! Better!

So now I like to drink this in the morning! It's better than a cherry Mister Misty! I swear!

2008-08-21T22:44:00.000-05:00

I thought my first entry would be about my first hospital stay almost three years ago, when I got my right adrenal gland removed. It does and it doesn't seem like a very long time ago . . .

My First Ever Hospital Stay

I had to be at the hospital at five am the next morning for the scheduled seven am surgery time. It’s like catching a flight. That is what I compare it to. Remember that my cortisol levels were frantic. I was pretty excited. I couldn’t wait. I had never done this before- such an ordeal. The biggest emergency I had ever had was a broken wrist when I was eight years old. This would be something else. I knew I would not feel the pain during the operation, so I wasn’t really afraid of pain. And I wasn’t afraid that I wouldn’t make it through, either. That wasn’t a possibility in my mind. My parents were a nervous wreck. Was I crazy not to be scared? There must have been some fear, but the excitement and curiosity I felt seemed to override it. Maybe it was a protective thing. I don’t know. Yes, I was crazy.
Checking in at the hospital seemed so normal and routine. I stood in line, signed some papers, and then waited in a lobby with other people, magazines, and a fish tank. It certainly didn’t seem like I was about to undergo a life changing, possibly life threatening, experience.
Prepping me for the surgery took a good amount of time. The nurse had me put all of my clothes (everything) into a plastic bag. I wouldn’t see those clothes again for seven days. I was going to be bare-naked for a bunch of strangers for the first time since my birth twenty-four years before. I tried not to think about it.
I remember lying in a bed waiting. Occasionally, a nurse would come in.
“Still doing okay?”
“Yes,” I nodded. Two people came in together and sat down by my bed. They had pleasant faces and they smiled calmly at me.
“Nora, hi, we are your anesthesiologists.”
I wanted to hug them. After explaining how I was going to be put under soon, they offered me an epidural. I knew what this was from hearing about women in labor. They would stick the needle in my spine. I said, “No. Thank you.”
Shortly thereafter, a small group came in to take me away on a gurney. I don’t remember paying attention to their faces, nor did I know who they were, but I said, “You better take pictures of this.” As if I was going on vacation! I had better remember to smile.
Then there I was! In an operating room! It was cold! Machines with tubes. Very bright, and white. The floors reflected the bright lighting and sterilized steel. The nature of the room was calm. The anesthesiologist who had offered me the epidural said, “I think you may want the epidural.” I said, “Alright.” I hardly felt a prick of a pin on my back and that was it.
***

I was being wheeled down a hallway, passing by many others along the way, into a big crowded room of beds. The beds were all next to one another and each bed was filled. It was like a war zone infirmary. The room was bustling. I found myself in one of the beds, with a nurse checking my blood pressure. In the bed next to me was a full-grown man screaming and squirming. He was cussing like no other. Spitting profanities. I don’t know when he left, but I was later woken again by a new bedside neighbor. This time it was an old woman and three nurses were trying to calm her down and put an IV line into her arm. She kept saying, “You’re trying to kill me! You’re trying to poison me!” One of the nurses said, “I’ve been working here over fifteen years, and so far I haven’t killed anyone yet.” I thought, “Gosh, am I dreaming? Or watching a movie?”

The next time I woke, my aunt was peering down at me in her big poofy light blue shower cap. The staff in the radiology department wear those silly hats. I don’t know why. My aunt, who happens to work at the hospital in X-ray, had snuck in.
“My goodness! How are you? My goodness!”
I blurted back to her, “There’s hardly a foot we can’t fit!”
My aunt was most likely dumbstruck. I must try to explain why I said this, although I don’t know exactly why myself. What I can say is that I was reciting the slogan of the shoe store down the street from the hospital. The weeks following up to my surgery, I had frequently gotten off the bus at that corner to walk to my appointments with Dr. Tierney. That’s all I can say about that. Then I was on to talking about a party and whether my aunt was going to it or not. My aunt did not know what to say, I am sure. So she tucked a stuffed lion into my bed. She explained that this was the same lion that my cousin (whom I had lived with the previous summer) had squeezed when she was in labor. And, in fact, my cousin was out in the lobby with my parents, and the new baby, Arthur.
I was later told that while I was happily chatting away with the nurses in the recovery room, my family was in the lobby, still, where they had been for the last four or five hours. Waiting, waiting, waiting, and waiting. My surgeon had come out to tell them everything had gone very well, and at that moment, one month old Arthur smiled real big. My mom loves to tell this story.
My aunt, in the meantime, (who was playing hooky), was running back and forth between me in the recovery room, and my parents in the lobby, delivering updates. Her report to my parents:
“Well! I guess she must be all right because she won’t stop talking about some party. And she said something about shoes. I don’t know what that was about.”
Back in the recovery room, I was still being chatty. Some nurses tending to other patients around me wanted to chat, too. One nurse said, “I want to have that patient.” She came over and talked to me and somehow we got to talking about Neenah, Wisconsin. "That is where the manhole covers are made." I said.
“Yep.” The nurse said. “That’s where I’m from.”
I said, “ That town stinks! I call it Stink Town!” And that is true. It literally is true. It's because of the paper mill. I know from driving through on warm, humid summer nights with the windows rolled down. That’s when I must have passed out lousy, because the next time I woke up, I was somewhere entirely different with no one to talk to.
***
What is it like to wake up in a large dim room with IV lines coming out of your arms and tubes stuck into your nose? The real deal? Did I feel like a hospital patient yet? No. I didn't. It was like I disassociated myself from it. It was so foreign to me. That, and I was pickled with drugs by now.
Walking through hospitals used to make me feel faint- the thick smells and eerie air that made me walk unstable. Here I was, a patient in a hospital. Somewhere I never pictured myself to be. And I just had intensive surgery. This is all very serious. It was hard to move. I didn't want to move. After thinking about how I didn't want to move and staring at nothing for a few minutes, I peeked down the front of my gown to get a glance of my massive wound. "Ugh, I don't want to see that yet." I thought. "It's not a part of me."
My first nurse in the ICU was just my age. Just my age! I would later realize that nearly every nurse I would meet during my seven day stay would be nearly my age, some younger. The nurse was wearing magenta and she had long slick blond hair that swished on her back when she walked around. She wrote her name on the board: HI MY NAME IS ☺. She bubbled about how it was so great to have a patient her own age, and did I watch "The O.C."? "The O.C." would be on that night and we could watch it together. Wouldn't that be great? I didn't like "The O.C.", but she was nice. As it goes, I fell asleep during "The O.C." and she didn't have much time to watch it while on duty anyway.
At some point (same evening? Same day? Next day?) my surgeon strolled in, in his scrubs. Last time we had met, it had been in his office and he was wearing a suit and tie. The mood had been dire. It was different this time. He walked in pleased, almost a bounce in his step. He was pleasant and unassuming, humble in his scrubs, and me, I was more humble than ever in a hospital gown and squinty face. My surgery had gone miraculously well. The tumor was about the size of a grapefruit (a grapefruit? Yes, really). He had removed my gallbladder, too. Better now than later. No need for a gallbladder, anyway. As he explained all of this, he inspected the fresh new monstrous gash lining my stomach. It went from just above my belly button and around to my right side.
"This should heal nicely." He said. Then he ripped something out of my side, which sent shots of pain through me. It felt like he had just pulled a dagger from my side. Maybe it was a tactic to distract me with chat while he yanked the wretched thing from me. It's hard to be distracted by knife-like pain. But he was able to do it quickly and with no protest from me. All it was, really, was a small tube that connects to a bag to collect all of the funk and bile-matter my body needed to get out. Kind of a cleanse of the gut. I now have a very tiny polka dot scar on my hip to remind me. I still think my surgeon is a pleasant man, even with all the pain.
My first unexpected visitor was my great godfather, the God Bob. He bounced on into the room. He is always a presence. Even if I had been fast asleep, I would have known he was there.
"Hey Nor! Hey! Hold on a minute."
He couldn't have been gone long, only a minute or two. While he was gone, out of nowhere, I had a sudden shot of pain surge through every nook and crook to the tips of every point in my body. I couldn't control it. I was shocked and stuck in one place and all I could do was just hope for the pain to stop. It was horrendous. I moaned like a cow giving birth. No one heard me. I was all alone and I could not move. I thought for sure this would be the end all. It probably lasted less than a minute. It subsided by the time God Bob came back. I didn't say a thing about it.
God Bob pulled up a chair.
"Man oh man. I just can’t believe all this crap you have to go through. Remember when you were telling me about all this? This mysterious woman thing. Now here you are. Man. I remember when I had a hernia, not too long ago. It sucked . . .it was . . ."
I couldn't keep up with him. My eyelids were hovering and no matter what, I couldn't keep them up. I don't know what else God Bob said or when he left.
I had a long, unaffected slumber on into the next day. It was a sunny day. There was my dad at the foot of the bed reading the newspaper. He was quiet and chewing on his thumbnail. He saw that I had woken up and smiled, asked how I was, told me to keep resting. He handed me a copy of "Harper's" magazine, which I could only stare at- not read or comprehend in any way. There were not very many pictures, either. I nodded off again with "Harper's" in my lap. Next thing, there was Dr. Tierney. He was not in his usual white doctor's coat, instead he was wearing a sharp orange dress shirt and he had a black shoulder bag. Quite appropriate. It was so good to see him. Familiarity is always such a comfort. And he was peaceful and spoke softly. He asked how I was doing. I looked down at the "Harper's" in my lap and read one of the headlines out loud. I don’t think he knew how to respond. He would, in time, discover that I was full of random comments and flighty, nonsensical witticisms. Hmmph.
***
After being in the ICU, I was moved up to Ward Four. It was crowded with many rooms, all of which were filled, most of which had two patients to a room. The patients had all types of ills and aches and moans. I, myself, would meet nearly twenty different nurses and five different roommates during the rest of my hospital stay.
I was mostly free from excess tube matter except for an IV line in my arm, which continuously juiced me with drugs. Drugs to keep me mellow and sane, or maybe to keep me in just the right state of oblivion. I would be attached to the IV pole and would have to drag it with me where ever I went, which was mostly a ten-foot expedition to the bathroom. I say expedition because it was, for me at least. I had to learn how to get out of bed with the least amount of pain. It was a process. Unplug the IV plug from the wall socket (it runs on batteries temporarily), adjust the mechanical bed to an upright position, move the guardrail back, brace my elbow on the bed to stabilize my body, take a huff and a deep breath to lean up to sitting, fly my legs fast (to avoid a longer amount of pain) to the edge of the bed and push myself off the bed with my palms. OWW. You cannot imagine how tedious and routine this became, trying to eliminate the literal gut-wrenching pain. At first, I could only do this procedure with the help of a nurse. I hated having to use the bathroom. The night nurses were not as gentle because they were at their busiest. They didn't have time for my elaborate procedure. They would sort of yank me out of bed and say, "Call me if you need me." Then I would hobble into the bathroom, my feet shuffling, dragging the IV pole, with the back of my gown flapping open. When I finally, and ever so slowly, set myself down on the toilet, I had to brace myself by holding onto the side rails. Now I knew how crucial those handrails were. I would not have had the strength to hold myself up without them. I could have fallen into the toilet and gotten stuck. I thought about getting stuck in the toilet and having to pull the string and call a nurse, or a bunch of nurses, to tug myself out. POP! This whole ordeal made me feel over ninety years old. I really have some sense of where the irritability comes from at that age. Imagine trying to do all of this on top of being deaf, with Alzheimer's and having an ingrown toenail to boot.

Nights in a hospital are anything but peaceful or sleep inducing. Even with all the drugs loosening my consciousness, I would have to be whacked on the head with a pan to fully pass out into slumber. For one, there is always the pain to avoid thinking about. And the urgent, constant need to get up and take the trek to the bathroom. Lying in bed, I listened to the nurses bustling around, answering calls from the patients' buzzers, propping pillows, and emptying bedpans. Random beepings at different tone levels sounded throughout the ward, coming from IV poles needing IV bag re-fills. Then there was the occasional moaning of roiling, toiling patients. When, and if, I began to nod off, a nurse would come in, throw on the light and check my vitals. Either that, or a lab assistant would wheel in a cart and collect my blood. They were always so friendly, so I couldn't be upset. I would give them my arm and hope they could find a vein that had not yet been spent. Before I knew it, it was early morning and a janitor was in my room mopping the floors, leaving behind the heady linger of Lysol scent steeping up the room.
During the daytime I tried to catch up on sleep. The trouble was, I had visitors. Then I would get jazzed up to see people. Friends from work, my sisters, my sister's friends, some of my friends, aunts, uncles, and cousins. They spoiled me with treats. I got in trouble when a nurse saw me eating a chocolate when I was supposed to stick to a liquid diet. I got calls from Canada, which turned into long bouts of explanation and their shocking disbelief. Having visitors was wonderful and exhausting. The attention was wonderful and overwhelming.
My parents came every day. They sat and sat by my bed for hours. On occasion, they would rise up and find coffee or food. They felt guilty when they had to leave at night to go home to their own beds. They came back as soon as they could the next morning. I love my parents. I really, really love my parents.
I had many roommates during my stay, some of which I got to know and others who never said a thing. I believe I had five altogether. The very first roommate only stayed about twenty minutes. It was about two in the morning when she was wheeled in. I don't think she even made it into the bed. She put up a huge fuss in a scratchy, whiney voice.
"This is intolerable! I will NOT share a room. Completely out of the question. I cannot believe this. Who is in charge here? I will get my own room!"
The nurses, trying to keep calm and unfettered by this selfish woman, kept saying there was nothing they could do. The hospital was full. She would have to share a room. Luxury was not an option for this woman. Everyone was in the same boat, and lucky to be taken care of. She would not accept this. I don't know how she got her way in the end. Maybe they wheeled her off to the psych ward. I kept thinking,
"This is not a hotel. You're lucky you have a room and you will be taken care of."
Some people, even women in their capable, mature, forty-something minds, just don't understand the outside world.
I had a roommate who stayed a few days. We got to talking a lot, and it turned out that she knew someone I knew. We laughed about how quirky our acquaintance is and how funny it was we both knew her. She was a remarkable woman who had opened her own art gallery in Minneapolis in the late eighties. She then moved to Maine to be near the ocean air. She was back in Minneapolis to take care of her mother. Lo and behold, she landed herself in the hospital because her leg, which had been previously broken, had given her an aneurism. She was in a lot of pain. We could both relate to that, too. She had been very reluctant to accept all the pain medications she was given. We talked about drugs and we talked about pain. I got to know her well and it was too bad when she left.
I had a roommate who never said a thing and I never saw her face. We never even said "Hello". She only stayed about a day.
One of the nights, I awoke to the arrival of another new roommate. She was having a panic attack and was pleading for more drugs. She kept saying she couldn't breathe. She needed more drugs. In the morning, she wanted to make sure her two sons, now at home alone because she was at the hospital, were all right and were getting ready for school. Had the dog been fed? Were the boys dressed? Her voice was frail and wavering.
"Nurse, nurse. I need a doctor. I need drugs. How are my sons? My boys, how are my boys?"
Later on, during midday, her doctor came in. He was very short with her. She wanted to get an AIDS test. Her doctor said,
"No. You don't need an AIDS test. You're just fine."
"Then give me my pelvic exam."
"No. You don't need a pelvic exam. No pelvic exam."
It was so awkward for me. I could not avoid hearing their conversation that should be private. The doctor was so far removed from any sort of compassion. He was barely there five minutes. It was awful.
Further appalling was when a psychologist came in to speak to her. Both of them were capable of leaving the room for privacy. But they stayed, and everything they said I could hear. I was ashamed. I could not believe that this was going on. What happened to patient confidentiality? The patient seemed not to care and she launched into how her oldest son, who was twelve, might be involved in a gang, but she wasn't sure. She was afraid he would be shot. She was afraid she had AIDS. She was always sick. And this made her have panic attacks and she just needed more drugs. And who was going to feed the dog? She said all of this in the same frail, gasping voice. I did not fully know her story, only what I had heard, but I knew it wasn't something that should be talked about in front of a stranger. I felt ashamed that I was there and that I had heard.
Stranger yet, after the psychologist had left, the woman picked up the phone and called someone. Her tone of voice changed entirely. She spoke clearly and straightforward into the phone,
"Hey man. Yeah. I'm all laid up in the hospital. Should be out soon. Yeah man, I'll call you when I'm out."
I did not question. The woman sunk back down into her cradle of bones.
An elderly woman took her place. This woman had led a solitary life with a chronic illness. I didn't know polio still occurred. I had thought it had become a by-gone disorder; a condition from the time of Franklin D. Roosevelt. From the age of fifteen, she had been unable to use her legs ever again. She had been schooled at the Sister Kenney Institute back when it had been a school for disabled children. Since then, she lived in her sister's house. Her income came from social security. For past-times, she crocheted and enjoyed collecting dolls. To me, this life sounded so dismal. I imagined she hadn't traveled, had a romance, or had much of a chance for a social life. Regardless of how she said she had gotten along just fine, I couldn't help but think how very secluded she must have felt from the world.
Many doctors and residents came by- I'll never remember all of them. My sleepy, crumpled face would awaken from my periodic dozes and I was never able to recognize anyone. I didn't exactly know why it was necessary for so many doctors to poke in. The nurses were caring for me very well. If I had known they were getting paid for these two-minute visits, I would have put a 'Do Not Disturb' sign on my door. I thought perhaps I was a spectacle for them to peer at- a medical curiosity. They always, always inquired about my bowels.
"How're you doing? . . . (uncomfortable pause, but trying to act totally casual) Have you had a BM yet?"
Having a BM became a huge deal. In fact, it would be my ticket out of the hospital. I went for daily walks in the hallways to get my bowels to move. My walks were very slow paced. I was a complete annoyance for anyone trying to get past me- people who had important places to be. I made big goals to get from my room to the nurses triage. Sometimes I couldn't make that goal- too painful in the gut. I hobbled along hunchbacked and gripped onto the IV pole, pushing it along like an old crone. Here I was again, an old crone. I sought encouragement and approval from nurses and doctors I slogged by in the hallway. "Look at me!" If I could only get those bowels moving, then they would be really proud!
There was one doctor in particular, Dr. Adair, who came around and stuck around. I couldn't recall ever meeting him before, but he seemed to know a lot about me already. He spoke to me as if we knew each other. His visits were more like real visits, the kind one would make to a friend. They were not just "part of the job". We joked some. Talked about movies. I showed him a funny clip from a movie on my laptop. It had Bill Murray in it. We both agreed that he might very well be one of the most effectively funny actors out there and from then on, when I ran into Dr. Adair outside of the hospital at the clinic, he always asked what good Bill Murray movies were out there. I had been no expert, but it became the thing we had in common. I guess I became "the Bill Murray expert" after that. "Groundhog Day".
Dr. Adair had an awful lot to say about the current healthcare situation in the United States. I hadn't thought too much about it until now, and I was very much out of the loop on such a matter. But I had better pay attention because now I was seriously involved in it, and I had no health insurance. I had had major surgery and now I was soaking up expensive drugs and paying for time in a hospital bed. I said I had better get a job WITH health insurance to pay for all of this. It was lucky enough my parents were already trying to help me pay for college. They couldn't afford this, too. It was a real predicament. Dr. Adair said, "No. Don't get a job! Stay unemployed and you'll be better taken care of." I had no idea what he meant. I did not know that there were programs for uninsured and unemployed citizens. I would have to remain unemployed or else I would not be able to pay for my major healthcare costs. What an oxymoron. He went on to lament about how so many people my age were in my boat- millions. I believed it. People I knew didn't have health insurance because they didn't think they needed it. They were not going to be the ones to come down with some crazy ailment, or land themselves in a horrific accident. They had two part time jobs, for example. Or, they had just gotten out of college and they could only find entry-level positions that paid enough to rent a cheap apartment, live on a scrimpy diet and pay the monthly college loan bills. If offered health insurance by their employers, often they would opt out because it didn't seem worth it to take that extra chunk out of their paychecks every month to pay for it. Or, in the case of a job I had once held, I had to work a ridiculous amount of hours that would equal up to about a year before the company would even offer me health insurance. Then there were deductibles to pay before the insurance could really kick in anyway. Health insurance seemed unnecessary, too complicated, and not worth the extra "hard-earned" cash.
Dr. Adair came by my room frequently. His character was completely unassuming. All his focus was on me and how I was doing. He really paid a lot of attention to how I was actually feeling, even if I played up my stoic act and said I was fine, while grimacing through edging pain. If he was not satisfied or assured that I was absolutely comfortable, he would track down a nurse to adjust my pain medications. His kindness was completely unrestrained. His conversation was not air filling talk about the weather; it was about what is interesting to talk about.
Dr. Adair was there when I had my major BM trauma. It was about five a.m. when an older nurse, one I had not met, came in and asked me if I needed a little something to speed up my bowels. I was barely awake. She told me to turn away from her and so I did. She shoved something that felt as big as a super ball up my bum. I yelped and curled up like a shrimp. I did not know what would happen later that morning, around eleven a.m. It was dramatic. I got a stomachache that grew to an extreme. I revealed to my mother what the nurse had done earlier.
"Oh Nora, you better get to the toilet. Quick."
Oww. My stomach. Once I was on the toilet and gripping those handrails, I bobbed up and down and back and forth on the seat. I shook and sweat and had chills. I kept rocking back and forth to ebb the pain and nausea. I could hardly see. It got really bad. I was cross-eyed. I started crying and rolled onto the floor gripping my stomach. Rolling and crying. I would never get through with it. I could hardly breathe from hyperventilating. I could hear Dr. Adair outside the bathroom door. He was furious when he found out what had happened. That nurse never should have done what she did.
The next time I had a BM, it was naturally and on my own. This allowed me out of the hospital. After seven days, I had had enough fun. It had been seven days of not feeling the sun. My skin was like chalk. It was time to go.
Before I left, I met with my future oncologist. I had never acknowledged that I could have cancer. I thought all along that I was done with all this sickly business and all I needed now was to recuperate from my surgery and then I would be back on my feet again, working, living in my house with my friends, dreaming about what my life would be like in the next few years. Cancer or anything like it was out of the picture. I was not done being young yet. Cancer didn't fit into my lifestyle very well and I was not willing to accommodate it. I pushed the possibility away.
On the drive home, wearing my own clothes again, I opened the sunroof and felt the cold air. It felt so good. It smelled cold and good. I was done at that hospital. Soon this would all be a story to tell, not a present reality.