Waiting

The waiting is the hardest part. It seems that every time you go to Stanford you wait. Patients should be called waiters. That’s what they do. Wait. Sit. Wait. Maybe they should be called patience instead. You watch the clock. They put the clock on the wall next to the television that’s attached to the wall with a bracket. Why is the clock so near the television? It’s torture. Watching the slow moving hands make their way around. One…two…three… Some clocks have a sweeping second hand. Others have the tick, tick, tick of small movements. Either is equally slow. Monotonous to watch. Time passes so slowly. Sigh.

The television does not offer respite from the boredom of life in a hospital room. The remote control, attached to the bed is archaic. No inputting channels here. You must scan using the up and down arrows. Scan through seemingly hundreds of dull programs, looking for the least inane. God, something to entertain your brain while you wait. Wait. Wait.

You are sleeping. Sleep…finally. Throughout the night they come in to check vitals or clean urinals. How is a person supposed to get any rest with all these interruptions? Don’t people check into hospitals for recovery purposes? Is rest not a requirement for recovery? Ironic. They have a job to do. Everything it seems, is on their time. Awaking you from sleep to check your blood pressure, temperature, and urine output. “How much water did you drink since 10 pm?” You can’t remember. A minute ago you were finally a sleep. Not a care in the world. Dreaming you were home sleeping in your own comfortable bed, one cat at your feet, the other on the pillow. “Where am I?” you wonder. Oh yeah, Stanford getting chemo. Again. Cancer. Oh yeah. Sigh.

Why are nurses so available when you’re sleeping? When you’re awake and need something to help you sleep, you buzz the nurse button on your archaic “remote control” to the television. It’s the large button on top. The one with the outline of a nurse, wearing a hat. The little cross signifying an ambulance or something decorates her hat. None of these nurses wear hats. “Yes, may I help you?” says the receptionist. “Hi, can you send the nurse in? My machine keeps beeping.” It seems like it beeps ALL The time. “I’ll let the nurse know.”

Sometimes it seems as if you are calling Siberia. The nurse is just outside your room, yet it takes sometimes hours to get her to come in. Does she not know you’re asking for her? Did the receptionist relay your message? You press the “silence” button on your infusion machine. It will stay silent for 2 minutes. Heavenly. You are so tired. You drift slowly back to where you were dreaming. You want to go back to that place, your warm bed, under the down comforter. That’s it. You’re there. So comfortable. Sleeping. BEEP! BEEP! BEEP! Fuck.

“Keep the machine beeping and call the nurse again,” She says. Maybe the actual sound will make it real to them. What an annoying beep. Why is it so loud? In today’s high tech world, one might expect some sort of alarm to go off at the nurse’s desk. “Mr. Godwin’s machine is beeping.” The nurse can see what bag is empty on the monitor and bring in another saline dose. Where is the suggestion box? “I’ll let the nurse know.”

The nurse enters. She looks groggy. When does she sleep? Her hair is now in a ponytail and she is wearing an aqua sweatshirt over her scrubs. “Hi,” she whispers. She presses the magic buttons on your “chemo machine.” Ah, silence at last. Damn. You wish you knew that code. “I’ll be right back,” she says. You won’t know it though. It’s 3:33 in the morning. Once again surrounded by silence save for the slow cycling sound of the chiclets pressing the tubes to allow more poison to flow into your veins. You’re asleep again. Snoring even. That’s when She knows you are not worried, afraid, or in pain, when you snore. Music to Her ears.

Sleep comes in small spurts, so when it comes, you relish it. At 5:30, Colleen re-enters the room. She tries to be quiet. Depending on how much Ativan and Benadryl you have had, you may sleep through the routine blood draw. She’s considerate. If a noise rouses you while she uncaps the valves to collect your blood, she apologizes, whispering, “Hi. I’m sorry.” You mumble, incomprehensibly “s’OK.” You’re out again. See, it didn’t hurt. You almost didn’t know it happened. Colleen always leaves the lights off if she can. You both like her.

Every day, breakfast comes around 7. Once again, you’re asleep when they open the door (loud latch, the light sneaks in, eventually drenching you). All you want to do is sleep. While asleep, you are unaware of what time it is, what day it is, how many hours you’ve been attached to these tubes containing rat poison, and how many more hours it will be until you can go home and feel like shit. Something to look forward to. It’s bad enough that breakfast comes so early, but unless you eat the awful concoction now, it’ll only be worse later, after the eggs have become even more rubbery and the bacon is cold too. God. You don’t even want to make the effort to wake up enough to eat. They should know this. Maybe they need some input from a food stylist. If the breakfast was more appetizing, maybe you’d even wake up before the hair-netted man brought it in. It’s so institutional. The hairnet pulled too far down his forehead, the apron, a uniform for a glorified janitor. They should wear nice white waist aprons, and bring a tray with a silver lid-covered plate of china. The silverware would be real silver and not in a hermetically sealed baggy atop a too-thin, too rough, one-ply napkin. No, the napkin should be linen. Maybe a small bud vase containing a single flower. Different bloom for each day of the week. Oh but what if you are neutropenic? No fresh flowers. Fine, silk will do. A pansy, or poppy, or daisy to cheer you up and welcome you to another day. Another day inside Stanford Hospital. What will you do today? Maybe there is a concert. No, that’s Thursday. What day is it anyway? A newspaper would be good. This is supposed to be breakfast in bed, after all. Sigh.

After breakfast, brush your teeth. At least you have your Sonicare. Those sponges on sticks are useless; like brushing your teeth with a cotton swab, real effective. You look at yourself in the mirror as the Sonicare makes its gentle vibrations on your teeth and gums. Never far away is that chemo machine that you are tethered to. Sometimes the cord will reach and you don’t have to unplug it from its power source on the wall to get to the sink. Does it feel less confined when you are unplugged? There isn’t much room to roam around anyway. The room is so small. Barely space for the foldout “bed” She sleeps in. She has a pink blanket on the bed. She is now folding it, demolishing her temporary housing for the day. She piles the bed linens wherever She can find room for them. She folds the bed back into chair mode, ready for your mom to sit in and read Newsweek or do crossword puzzles. She has to go to work. You’ll be alone here. Sigh.

What if there was no TV? You would go insane. Daytime television is so bad, but you look forward to it. How sad existing in this room is that you must look forward to watching two people on a Blind Date, or sit through reruns of news stories by Sachi Koto on CNN. Sigh. It’s only 8:30. What do you do after the Today Show is over? Matt and Katie are your company until 10 am. They do not realize how important a part of your life they have become. They are as much a part of your day here as the cold breakfast you get every morning (sitting on your tray table).

When Katie and Matt sign off at 10:00, you wake up and realize you slept through it. Bummer. They’re entertaining at least, and now they’re gone. You still have 2 hours before Saturday Night Live starts on Comedy Central. Your mom will be here soon. She’ll be bored. She’ll sit here all day and help you to the bathroom if you’re too wobbly. You pretend to feel better than you really do when your mom is here. Sometimes you don’t want her to come. You want Her instead. You want Her to play hooky from work again. She says no because you won’t even know She’s there if She stays. She may as well save hooky time for when you really need Her, She tells you. You really need Her NOW. This is so boring and frustrating. You have cabin fever.

You look at the chemo machine. One of your bags is almost empty. Good. It’s the Cytoxan. Today is the last day for that, isn’t it? What day is it? The wall calendar says Wednesday the 22nd. The number on the calendar is huge. It mocks you, laughing, reminding you of the number of days you are stuck in this room. There will be no visits to Starbucks today. No Americano for you. No reading the papers in the sun, watching the people go. Where do they go? What do they do? Do they realize how lucky they are to not be trapped in this room? You won’t go to the Practice Place and play your horn. Not today.

The day passes. Slowly. Why does a day seem so long sometimes and so short others? They are always 24 hours long. Maybe they play a trick on you here and time passes slower. Can they do that? It feels like you should be going home today, but you still have one more day to go. One more day. So boring. You just want to sleep. Is it time for more Ativan yet? When was the last Benadryl bag brought in here? You hope that the day nurse knows you’re on round-the-clock anti-nausea meds. You do not want to get sick. You hate that. Hate it. Maureen walks in. Whew. A good nurse. Your mom will be happy too. Maureen glances at your unzipped fanny pack attached to the bed control panel. You hope she doesn’t see your hidden stash of contraband tucked inside the black leather. No, she doesn’t see it, or if she does, she says nothing. She looks at your lines, checks the toxic fluids and tells you you’re due for some Ativan. Good. Sleep. Ativan is good for a couple of hours at least. That’ll pass the time until SNL. Your favorite way to pass the time here is sleeping. If you could just come in on Monday and sleep until Thursday, you’d be happy. But there’s that peeing thing. No. You don’t want a catheter in THERE. You’ll do the usual. Just keep the anti-nausea meds coming.

The phone rings. You HATE this phone. It has no volume control and the ring pierces your brain. Your mom answers it just as you motion to her “I’m asleep.” She understands the motion and knows it well. She tells Bruce you’re out like a light so he will call back later. You are too tired to try and muster the energy to talk, and much too tired to listen…to…Bruce.

You fall asleep again.

(c) Catheroo 2002

I got to see my dad real quick in recovery last night around 7:30, and he was in a lot of pain and feeling nauseated. But he still had time to tell me to “Be good,” and throw in a joke or two.

This morning I called my mom to see if she’d called the hospital for an update and she told me that my dad called her. And he was doing great. Today he was sitting up in a chair and tomorrow they plan to get him up and about walking ALREADY. I’m going to visit him tomorrow and will tell him of all the support he got from people he’s never met. The internet is a beautiful thing. Thank you, thank you.

Next, after he’s completely recovered, he’ll begin more chemo and possibly radiation. This will suck. But for now, I am focusing on how incredibly he did in surgery. He has a great spirit and wants to kick cancer’s ass as much as I want him to. Also, I think cancer should be scared shitless of my dad, because it keeps trying to beat him down and he just kills it. I think it’s running away with its tail between its legs, right about now.

Thank you for your kind words of support this week too. XOXO.

Yes. The smell. That smell. Of stale coffee, microwaved Cup-O-Noodles and anti-bacterial hand soap combined with the stench of uneaten hospital food, freezer-burned ice cubes for making ice chips, and pink plastic pitchers. And suddenly I was there. At the oncology floor of Stanford University Hospital in 2002. In an instant I was transported to the kitchen, where caregivers would come to grab a popsicle for their father, mother, sibling or their not-really-a-boyfriend-but-I’m-sticking-by-him-through-this-because-I-love-him. Where caregivers could escape the rhythmic inhale…exhale…inhale…exhale sounds of the pump as it dripped a toxic but necessary concoction into their loved one’s veins. Sometimes I would come into this haven and want to cry. But I never did. Someone might see me and my reputation as “a rock” would be shattered. And we couldn’t have that, could we?

Depending on that day’s menu, I’d often inspect the neglected food trays to see if anyone left their Oreo brownie. (Nearly every day, I’d have nothing to eat but a Nuts Over Chocolate Luna Bar and a grande nonfat latte.) Most of the time I came up empty in my quest for the bland chocolate squares. But the Jello cup was still there. (How is it that hospitals can even make Jello taste worse?) And maybe there would be some mashed potatoes, or a wilted salad left on the plate. No thank you. I avoided the anti-microbial and liquid diet entrees. Nothing exciting on those trays. On the rare occasion that I did find an Oreo brownie or two, I horded them like a Chipmunk storing nuts for the winter. I never ate them though.

Since I had the 6 pm to 7 am shift, my caregiver uniform was a pair of pajamas. The pants were covered in a tiny leopard print and the black tank top had a cat appliqué made of the same print. I shuffled across miles of that plain white linoleum tile in my puffy leopard Dearfoam slippers. Rawr. Caregiver disguised as fierce feline. Oh, and that fashionable pilly gray fleece I wore. Why are hospitals so cold? How many times I asked that.

Some nights, if he was allowed, I would bring him food from the Outback. A baked potato couldn’t hurt, but stay away from the skin. Most of these fancy Outback dinners, barely picked at, wound up in the fridge on our very own shelf. Inevitably the square Styrofoam boxes wound up in a pile in the garbage can because of his vanishing appetite. But popcorn was always welcome. And it went nicely with American Idol. Some nights were 2 baggers.

For a second today I remembered the feel of the stiff white sheets on my makeshift bed (which was no more than a pink vinyl chair that collapsed flat). I felt the coldness against my shoulders. The unforgiving “mattress” that made slumber nearly impossible was more like a box spring. Those sleepless nights are long gone.

Those days were a lifetime ago. And I have worked to lock these memories in a part of my mind where I am safe from them. But today I was back there. Back in those dark days, all because of my keen sense of smell.

DearLook, you…you…no words can describe what you are,

So, you targeted my dad this time. I won’t ask why because there is no reason good enough. Nor was there reason to attack Julie, John, Val, or Jamie. With each of them, I tried to find a reason. I came up empty every time.

First, there was Julie, a new mom to a cute baby boy, and you infected her while she was pregnant. Have you no shame at ALL? A mother/wife/friend/aunt/sister/daughter, creating a sweet new life inside her and you poison her. With an innocent baby RIGHT THERE. She tried to kill you with doses and doses of chemo, staying positive and not letting you turn her into a bitter, resentful person because of what you put her through. But you showed no sympathy whatsoever. Instead, you took her. More than 600 people came to say goodbye to her. Did you feel at all guilty? No, of course not. FUCK YOU.

And what about my ex-boyfriend John? Just when he was newly married and the happiest he’d ever been? How long had you festered in his bones? Were you there when he and I went skiing in the 90s and his hip was hurting? Was that you? Did you just lie there waiting to strike until the best time of his life? Well kiss my ass, because despite all the chemo he had to endure to try and kill you, and despite the fears of becoming sterile, he still was able to create a new life…a baby boy. John’s memory lives on in that little boy, and in our hearts. FUCK YOU.

And little Val. How the hell did you find her? Stage IV Lung cancer in a woman who never smoked a day in her life? She didn’t party, or drink, or even eat unhealthy foods. She was the most sincere person with a huge heart of gold. She’d never hurt anyone. Ever. But you struck her body with a force so fierce that no one could handle, let alone a woman just under 5 feet tall. She couldn’t fight you, and she lost. She was my friend. FUCK YOU.

Jamie was there for me when Julie, John, and Val died. In fact, we were dating during some of that time. He consoled me on the loss of my dear friends at the hands of YOU. And then. Then you worked your way into Jamie’s abdomen. At first, you acted like an ulcer, or just a bad stomach ache. But then the sign…the enlarged lymph node near his collarbone. I recognized you right away. I didn’t want to believe it, but I knew it was you. He tried to fight you. Chemo, surgery, radiation, he did it all. But you are a relentless enemy and he finally grew too weary to fight. You won. Again. FUCK YOU.

Four times you won.

There are four people that I loved who I cannot talk to anymore because of YOU. I fucking hate you.

And yet, you persist.

This time, you’ve found my dad. Again.

Fuck.

My dad?

Do you not recall that you’ve been there before? In the prostate? Well, back then he cut you out and told you to fuck off and die, asshole.

Is that why you’re back? Revenge? Could you not have invaded someone evil? A terrorist maybe, or a mass murderer? The doctor got you out of his colon..most of you. But not before you spread your evil nastiness to other places, you sneaking, slithering snake. So now he needs chemo for six months. Followed by radiation for six weeks. And you couldn’t give a shit, could you? Do you enjoy this? Knowing that you are not welcome ANYWHERE. Knowing that everywhere you go, people want you gone. Dead. People will allow themselves to be cut open, just to rid themselves of your despicable presence. This time, you’d better look out, you fuck. Because my dad can kick your ass. And when there are times when he may not feel so much like kicking your ass, I will remind him of what you did to my friends. What you did to my grandmother, for whom I am named, when my mom was just 10 years old. You took my dad’s wife’s mother, and for even more reasons than just that one, my dad will not let you win this time. So just give up. Christ, can’t you just STOP?

If there was a way for you to become something human, someone that could walk on two legs, have a family you loved, and friends you adored…I would find you and I would torture your family. And I would abuse your friends. I would make you watch this, so you could see what you do to people. And I would physically hurt you more than anyone has ever been hurt before. And this, you would feel. You would suffer greatly. Because this is what you do. You ruin lives. But I don’t have to tell you this.

You are a sadistic piece of shit asshole motherfucker. Stay the hell away from people I love.

I hate you.

When he was in recovery, I went in to see him. He was groggy, of course, but he was coherent enough to hold a conversation, and to mention something about calling Britney Spears (they have similar hairdos, since my dad recently shaved his entire head…and his bearded face. I do not think Brit suffers from excessive facial hair, but some believe she did play the “beard” in her relationship with Justin).

Pre-surgery, the tumor must have been causing him immense pain, because he feels awesome now. He needed almost no pain meds the first day after surgery, and the only time he hit his pain meds button was when the nurses suggested he do so because they were going to get him up out of bed. On a scale of 1 to 10 pain-wise, he said the highest he got was a 2.

He’s already been walking around. Without pain. Dude, my dad rules!

He wants to go home, of course, but I’m sure he’s entertaining his nurses with his crazy stories. I talked to him tonight and he said he’d been telling his new nurse about my wedding.

His surgeon removed some lymph nodes to biopsy and the results will tell us whether he will need chemo, and how much. Obviously I’m hoping he won’t have to deal with chemotherapy, but I think now, after the surgery was so successful, my dad will opt to do whatever comes next. His morale is great. He’s still got a long road ahead of him, but it’s hard to be depressed around such a cheerful patient. Plus, he kind of looks a lot like Don Rickles now, with his bald head and shaved face.

We’re hoping he comes home by Sunday, and we’ll have a big celebration, complete with his favorite foods. Pureed, of course. Yummy! If he’s not home yet, we’ll visit him in his sterile hospital room, and listen to his machines beep. That will also be fun. Because my dad will be there.

Thank you all for your kind words, thoughts, and prayers. My family and I really appreciate it, and if you could keep it coming, that’d be cool. Look for an open letter to cancer coming soon. I’m warning you right now, you with virgin ears (or eyes, I guess) might want to rent Reservoir Dogs to acquaint yourselves with the language.

Except for one thing. The thing I didn’t want to think about. When we were first planning our Big Day, this was far from my thoughts, like galaxies away.

But a couple of weeks before the wedding, I learned that this uninvited guest, who I detest, would be at my wedding. This asshole has destroyed the lives of people I love, and the bastard had NO PLACE at my wedding, or anywhere near anyone I love. Not on that day, or any other day. Just leave people the hell alone.

But cancer doesn’t care that it’s not invited. And it doesn’t discriminate in choosing where it infests. This time, it is in my father’s colon. Never mind that my father already had prostate cancer, and beat it. (Take that, @#$%er!) Cancer couldn’t care less if and when it returns. It’s evil, hateful, and persistent and I wish it would stay the f@#$ away from my family and friends.

Before he knew what was making him feel so sick, my dad told doctors that no matter what it turned out to be, he didn’t want to do anything surgical until after May 25. He would walk me down the aisle. He has looked forward to that fatherly duty for years, and nothing was going to get in the way of that, despite my telling him he should do whatever he needed to medically, no matter when he needed to do it.

He was tired on my wedding day, and sat to rest quite a bit throughout the festivities. But you couldn’t wipe the smile off his face. He gave a toast that made me cry and made me laugh. He danced with me to Neil Diamond singing When You Wish Upon a Star, and smiled. My friend June took about 30 pictures of him that day, just to capture his emotions. Those are some of my favorite shots. I gave him a frame with these two, for Father’s Day.

Tomorrow he goes in for surgery, to remove the cancerous tumor from his colon. A tumor that has NO PLACE being anywhere near my father. His recovery will be long and difficult, and he may have to endure chemotherapy. I will not tell him what he should or should not do regarding treatment. Whatever he chooses, it is his decision. But personally, I would like him to kick cancer’s ass so hard, it will never come near him again.

He could use your prayers, good vibes, positive thoughts, and/or whatever special wishes you can offer. I am hoping for a surgery that is as uneventful as possible. And I can’t wait to see his smile again.