Wednesday, May 23, 2012

New Phases

When I was eleven years old, I began my first job.

Yes, I said eleven; that wasn't a typo. Back in the days when dinosaurs roamed the earth, as in modern day China, kids actually had jobs and salaries. Lots of children went into sales, putting together lemonade stands or community newspapers, mowing neighbor's lawns or babysitting their children. A few, like me, went into retail.

Back then, people lived dangerously. They drank out of plastic cups that contained BPA and might have been washed with a garden hose. Beverages weren't made in commercial kitchens that were overseen by OSHA. That entrepreneurial lemonade was made in homes where there was possibly be a dog or even two, and a cat who was allowed on the counter, by kids who wiped their noses with their hands before opening the package of kool-aid and who then stirred it with a spoon so short they had to put their grimy hands in the drink. The water to make this .25 cent lemonade came out of the tap, shockingly unfiltered.

Mothers routinely left their infant children in the hands of the pre-teen next door, and they didn't require a teaching credential or day-care permit or anything. This was long before cell phones, so the moms would post the restaurant they were going to on the fridge door, leave potato chips for their employees to eat, and hope for the best. They got the best too, because the girls babysitting knew their own moms would beat them silly if they accidentially killed the neighbor's kid. You knew if your charge died on your watch that your parents weren't spending money on a high-priced lawyer - you were going down. You might even have to apologize, unheard of today. Babysitters were paid the princely sum of .50 an hour, which definitely is not a living wage, until you realize you could buy a candy bar and a coke with that amount and sometimes you worked four hours and got a dime tip. That could keep you in candy and soda all week, which is pretty much all any kid really needs to live.

Nowadays, of course, pre-teen children have not finished breastfeeding themselves and therefore can't leave their own mothers long enough to babysit somebody else's children. They are so busy being driven from sporting event to ballet class that they don't have time to go work for a living.

Babysitting was my side job. It was barely work, since once you got the brats kids to bed (which a good babysitter did by tossing candy in their room and blocking the door) you could watch all the TV you wanted. Johnny Carson in black and white, baby!

Fun as that was, my real job was working in a dry cleaning store. Every Saturday, my dad would take me to the store, drop me off, and leave me alone for the day. There, I would handle customers, check clothes in and out, run that cool clothes conveyer belt with a foot pedal, try to explain what "martinizing" meant, and put large, dangerous pins in drapes. I even put the stuff I found in pockets into a little bag to turn in to the owner. I have no idea what people thought when they came into the store and saw a skinny, knock-kneed, bespectacled, frizzy-haired eleven year old who barely looked nine waiting on them, but to their credit, nobody ever called the Better Business Bureau. Child labor wasn't that unusual back then; it's not like today when you have to write a contract promising to buy your kid a new car to get them to throw away the soda cans in their room.

Wait, I don't mean throw away, I mean recycle.

I loved that dry cleaning job. I used to take my lunch minute and go next door to the liquor store, and buy a coke and some sunflower seeds and then come back to the cleaners and sit in the back at a rugged wooden table filled with spools of thread and boxes of safety pins. I'd read a book and spit out shells, only getting up when the bell on the door rang, alerting me to a new customer. There were times when I violently hated that bell. Rhett Butler would be about to kiss Scarlett in the most romantic scene possible and I was completely swept away in the saga, and then "ding ding ding." I'd have to leave Tara to pin tags on dirty clothes, write up a receipt and tell the customer it would be ready on Tuesday. But, I did get up every time that bell rang, and greeted the customer with a smile on my face, even if I didn't mean it.

Even today, the smell of "perc" (perchloroethylene, dry-cleaning chemicals) takes me instantly back to the carefree hard labor days of my youth. Being the toxic chemical that it is - now banned in the State of California - it may also have ended up taking me to a lot of doctor appointments.

I made $3.00 every Saturday for six hours work. I was rich.

I don't need to tell you that I learned how to have a work ethic at that job. I wanted to watch cartoons on Saturday like everybody else, but making money and getting out of the house was more fun. Admittedly, since I love to read, I hated that little bell that announced the door had open and a customer needed me which required me to put my book down and go help them, but I did it anyway. I was terrible at math and am today, but I learned to count change (this was the days before cash registers did it for you) and occasionally the till would balance, I wouldn't get screamed at, and I knew I'd done a good job. I learned to make up fantastic stories on the fly, about Martinizing being a special method of cleaning clothes that leaves them cleaner and fresher than any other dry cleaning method, and why "One Hour" was not possible despite what the sign said. Making up answers quickly has been invaluable in every job I've ever had, and it all started with the phrase "One Hour Martinizing".

But that job was only one day a week, so when I was 16, I got an after-school job at a place called Woolco. It was pretty much the same as Walmart only everything there was made in Taiwan instead of China, and, you know, there was no "people of walmart" clientele back then. (Nobody had even invented the store scooter yet). I worked in various departments, and one Christmas I got the plushest job in the store. I got to man a little booth and make personalized Christmas stockings for people who had spent a certain amount of money. I would take Elmer's White Glue, write the name of the child on the white fuzzy part of a stocking, and then sprinkle the glue with the glitter color of their choice (red, green, or multicolored) and let it dry. If you could see my handwriting now you would not believe anybody would let me do that job, but I swear it is true.

Maybe somewhere, in some attic, one of my stockings is packed away carefully, the glitter all fallen off and the red felt filled with moth holes, but my childish handwriting faintly visible.

I'm 54 now, and in the intervening years I've had many jobs. I've done everything from Bartender, to Cruise Ship Sales Girl, to Keno Runner, to Network Manager at the DAs office, to Principal's Secretary in a High School, which is my current job. And, it has been my favorite job, even though I am not the boss like I have been in the past. I like it because it's perfect for my ADD self. There is something new every single day, a lot of variety, interesting people to talk to, lots of stories you have to make up quickly, and teachers and school personnel are pretty nice people.

I have stayed home with my children when they were young, and that is a busy job too; I don't care what Hilary Rosen says. It counts as hard work, and important work. But, when the kids went back to school, I have always returned to the workforce. I like to work; I like to feel like a contributing member of society. I have noticed over the years that on days when I don't go to work, I tend to lose all track of time and suddenly, my husband will walk in the door and I'm still in my pajamas with my teeth unbrushed. And, that was when I was healthy. Work keeps me sane, it keeps my ADD under control by giving me structure, and it gives me purpose.

When I was home recovering from c-diff, struggling to even stand, I looked ahead to the days when I would be back at work. There were times I felt that I would never be able to get well enough to go back, but I was wrong. Since February, I have been working.

But, only half days.

I have been trying to get back into the groove of a full time job again, but I have sadly come to the difficult conclusion that it is not possible. I don't have the strength or energy to be anywhere at 7:00 a.m., and it's looking like that might be a permanent condition. I struggle to get up by 9:00 and it takes an hour before the pain meds kick in and I have a hot, soaking bath and I can begin to function. I have about 4 or 5 good hours in me, and then I start to get tired and less effective.

My boss, my district, my substitute, all of them have been wonderful in giving me time to get healthy again, to try to come back. They have done more than I could have ever asked. I can't say enough good things about the way everybody has handled my illness and the way I have been treated - with kindness and consideration.

But, despite my best efforts, despite hearing that bell in my head that says "get up now, somebody is waiting" I am physically not able to do it.

I have faced the reality of my disease but it is much harder to face the reality of my decline.

So, I have given notice. I will work out the school year and work as long as they want me during the transition to a new secretary, but I sometime in the month of June, I will - forever - join the ranks of the unemployed.

Then I begin my new life - staying at home and trying to make meaning within these walls. I am going to be as productive as I can be but with my personality, that is going to take some doing. Without definite tasks that need to be done and some accountability, I usually find myself doing nothing.

Maybe I should look for one of those bells to put on my door.


Sunday, May 13, 2012

Happy Mother's Day and New Forum

Happy Mother's Day, especially to all the women who are raising families while dealing with a cancer diagnosis. I'm not sure there is much harder in life, and especially those of you with little kids - you are amazing. I must include all the mothers who take time to help their daughters and sons through a cancer diagnosis - you are amazing too.


A few weeks ago, I alluded to a new method of communication I was setting up. Now that I have a number of users, I thought I would let everybody know about it.

If you like forums, please go to Conversations about blog topics can be expanded beyond what the comment section allows, and it also will allow people to bring up topics unrelated to what I say and get to know each other.

It is also not only for cancer patients. There is a section where caregivers can talk, and also an off-topic section so anybody can go chat.

Feedback is welcomed. If it becomes active I will pay to upgrade to no ads but for now, you have to bear with some ads at the top.

Hope you enjoy it. And, Happy Mother's day!

Sunday, May 6, 2012

The Bedroom Door

So, you think a lot about where you are going to die when you have terminal cancer. All the obituaries say that people who lose their "battle" with cancer die at home, surrounded by family, which has always sounded vaguely ominous to me, kind of a threat. Who wants to be surrounded at the end?

I picture lying on my bed, looking up at all these blinking coyote eyes, all of them waiting for me to expire. Even creepier, in my fantasy, there is somebody, possibly my sister, urging me to "let go, that it's okay, you can go."

Lord help me. My family wants to kill me.

In reality, I think I'll probably end up all alone in my bedroom, and I think that people might even forget about me until that dead chicken smell starts wafting through the house.

Since I live with only men, maybe not even then.

I have precedent for that idea. My house is configured such that my bedroom is at the very back of the house, connected only by a long hallway buffered by a bathroom. It was an addition, done years before we moved in. If the bedroom door is closed, it's almost like being in a different home. You cannot hear anything that goes on out in the living spaces, and more concerning, nobody can hear you, alone in the bedroom.

Even my internet doesn't go that far - I had to put in a repeater so I could get wifi in that room.

When I got c-diff, I spent two days seriously ill at home before I went to the ICU. The first day, I stayed in bed all day, weak, in pain, unable to get up, and very very thirsty. The only thing that happened was at some point, my husband closed the bedroom door, cutting me off from the world and leaving me helpless and alone. I took the opportunity of him being close to yell at him to come and help me (I really needed water) but he didn't hear me. While my yell is often quite strong, possibly strong enough so that the neighbors would be able to hear me, at that time it sounded more like a whispering kitten. I was too weak to really do anything, and that included sitting up. Naturally, my husband didn't hear me, and he didn't check on me. I didn't see him the entire day, until he came to bed that night at about 10:00.

I scolded him as much as a person full of sepsis poisoning her bloodstream can do - reminded him to please check on me during the day if I was ill; that I was not a normal sick person who just needed extra sleep. He got me some water that night, which I managed to take a sip of before I passed out.

I was not able to get up the next day either, and he forgot me again until about noon, but after I did what nagging I could in my debilitated state, maybe with a tear or two, he came in and checked on me every hour or so thereafter, bringing me a cut up apple and more water. Of course, nobody knew how seriously ill I truly was, we just thought I had the flu. But, isn't that possibly the way it can go when you have cancer? You can be fine one minute and then you die of a flu the next?

When my temperature climbed that afternoon, diarrhea started, and I called the doctor, we went to the hospital, and that's when we knew how bad off I'd been and how close to death I really was.

Death had been standing at the foot of my bed and nobody came to chase him away.

Afterwards, we had a little talk about this situation. Me and my husband, I mean, not me and death. I reminded him that I do not have a normal healthy body, and that I don't think I should be left alone all day if I go to bed sick, and that the bedroom door should be left open so I can hear things and call if necessary. If I'm sick enough to stay in bed, than I think somebody should check on me once in a while; make sure I at least have water, am still breathing, those simple things you do for each other in a marriage.

I realize he got the short straw in this whole deal and he probably does want to just shut the door and forget it all, but I'm still here so the door has to stay open.

He seemed to understand my nervousness about this; how very helpless I was being critically ill and not able to care for myself to any degree. It happened so quickly too - I was entertaining guests for Thanksgiving dinner Thursday night and Friday morning I was near death. We learned, or I thought it was a "we," that there are no more guarantees and caution should be the norm.

But learning is difficult in some people who shall remain nameless but who wisely did not make the career choice to be a nurse, and we have exhibit A: this weekend. I am having my normal stomach pain, for two days now some new spinal pain, and some constant low-level nausea. This morning I woke up with a headache. I got up at noon-ish, drank some coffee, took some headache and nausea meds, and went back to bed. My husband came, and I heard the bedroom door close, and once again, I was locked away from the family with no way to call for help if I needed it.

Fortunately, I am not as sick as last time so I got up a couple of hours later when the headache subsided, and here I am, picking pieces of my hair off my keyboard.

But, if I hadn't gotten up, I know I wouldn't have seen him until a) he wanted to know if I wanted to watch a TV show with him or b) bedtime.

I am a unique combination of person who horriblizes everything and also feels like she's going to be fine. So, while I lie there I think that this spinal pain is probably mets and if I move wrong I'm going to be paralyzed, and that's why somebody needs to check on me and bring me water - I also am planning for guests next weekend and putting together my wardrobe for the week. Maybe that confuses my family; I don't know.

Yes, I do realize that death is typically a long process, and it starts with not being able to eat and drink and ends up with the coyote eyeballs, but after having an experience like fulminent c-diff colitis and being in septic shock (and fully awake and aware the entire time) I also know that there are can be sicknesses in between in which the person needs help, and during those times, a gal gets thirsty, even if she can't walk.

So, I'm going on record in saying that if I have to go to bed in the middle of the day because I don't feel well, I want somebody checking in on me every hour or so to make sure I am a) breathing b) have water c) cancer hasn't broken through all my bones and left me lying helpless as a jellyfish.

Also, if you know who to call to have this family surround sound system put in, let me know.

As long as it's possible to turn it down.