Why I Think Hospitals Suck

This list is in no particular order.....

Food. While the food at Northwest Hospital is the best hospital food I've ever had, it's still hospital food.

Piss and shit inspections. I had to pee in a "hat" so they could measure my output. I was also not supposed to flush the toilet, but did anyway. When they discovered this I was reprimanded, but that didn't stop me. I was willing to pee in the nasty, stinky, hat, but I draw the line at shit inspection.

Every couple of hours they come in and take your blood pressure, your temperature, and your pulse. Notice I don't blame the Nurses Aides that have to do this; it's just lame that it has to be done.

Hooked up to IV’s. After so many rounds of chemo you'd think I'd be used to it, and to a certain degree I am, but it still sucks. Especially at night.

A really, really uncomfortable bed that makes lots of noise. Despite wonderful advances in bed technology, they're still lumpy and made my back and neck ache like crazy.

Nurses and/or assistants who have only a limited understanding of English. I know this sounds racist, but after what I've been through I can't help but be a little peeved. It just seems wrong to put someone in charge of your health and well-being who can't understand most of what you say to them.

Said before, saying again....people employed to take blood draws that can't find a vein to save their lives. I've decided they're sadistic and like to watch people squirm.

Entire staffs of people who have no clue what's going on and yet are entirely in control of your existence.

Being told that you'll have surgery at 12 and not able to eat until afterwords, and then being told the surgery will be later and you'll still have to wait to eat.

Being told day after day that even though you feel better you will have to stay another day.

Loud people in near-by rooms who hoot when the Mariner's score, say "rock on" when their food is delivered, and tell every person that comes into their room about their cool iPhone. I wanted to walk in his room and explain to him the concept of an "inside voice".

Crappy televisions. What's the point of giving me a bunch of channels I don't have at home (Animal Planet rocks!) but on a blurry TV with terrible sound?


....and that's the small corner of hell I've been living in since July 13th. Home now and hoping never to go back but know it's bound to happen sooner or later.

Stingy Nettles

When I was young I frequently went on weekend excursions with my best friend Jamie, her mom Lisa, and her little brother Mikey. One weekend in early summer we all piled into Lisa's Chevy Blazer and we took off for Whidbey Island, a frequent destination. This trip we were picking up Jamie's older brother Jesse, who lived with her dad, and bringing him back to the mainland to stay for a few weeks while her dad took an extended trip. When we got to the house we were immediately dispatched outside and out of Lisa's hair for the rest of the afternoon.

With little else to do, we agreed to let Jesse lead us on a hike through the rolling pastures and evergreen forests that make Whidbey Island so picturesque. The weather was sunny and warm but windy as the island typically is. Jesse took us straight into the pastures, weaving over, under and through barbed wire fences. Despite the barriers, we didn't see any livestock, so I wasn't paying very close attention to where I was stepping until I planted a foot into a slick pile of manure. To step in manure is embarrassing enough, but as I tried to step out of it I slipped and dropped a knee into the mess. Now thoroughly mortified and smelling not so pleasant I desperately wanted to return home. I was afraid of getting lost and since no one else wanted to turn back I reluctantly continued on the trek.

I was relieved when we finally reached our destination, a lovely evergreen forest smelling of pine and moss and blessedly free of piles of cow manure. My relief shortly turned to dismay as the skin on my hands, arms and legs began to sting like crazy and white bumps began to appear. It felt like I imagine acid would feel on one's skin, and that in fact was the case for we had just tromped trough a patch of stingy nettles, a short leafy plant native to the Northwest. I had never felt their legendarily painful sting before I was shocked by the agony and immediately began crying. I was not alone in my misery; Jamie was also in pain although not crying as I was. Mikey, who was very little at the time, was wailing at the top of his lungs at the pain. Jesse was indifferent to our discomfort, and seemed to have conveniently managed to avoid the vicious plants. Now I definitely wanted to return to the house as quickly as possible, and was not alone in the sentiment. Jesse assured us that it would take as much time to get home if we continued on so we did. Needless to say no one was having fun anymore. I had managed to stop crying, but just barely. Mikey was inconsolable and hysterical. Jamie was irritated with all of us.

Jesse led us to a shallow icy cold stream that numbed our skin and dulled the pain. Mikey finally calmed down but continued to cry and I was simply relieved to wash some of the cow manure off of me and lessen the pain. Unfortunately we faced a new problem. Mikey wouldn't leave the stream bed because as soon as the water warmed up to our body temperature the pain returned just as painful as before. We still had a ways to go and Mikey wouldn't budge. With sunlight fading fast we knew it wouldn't be long before it would be too dark to see well in the depths of the forest so we spurned Mikey on despite his reluctance. The rest of the journey was a blur of pain, frustration, and bad tempers.

Upon returning, Lisa was furious with Jesse and accused him with intentionally taking us through the nettle patch. He spent the rest of the night in his room, but that didn't seem like a suitable punishment to me. Mikey was immediately placed in an oatmeal, baking soda, or some other equally soothing home remedy bath. I was forced to remain a stinky mess but Lisa did offer to wash my pants for me. Eventually Mikey finished his bath and since neither Jamie nor I wanted to go third, Lisa made us bathe together. I felt a little awkward taking a bath with someone else because that wasn't something I normally did, but the relief from the stingy pain was worth it. I have never been so reluctant to leave the bath tub in all of my life.

Getting Poked

When you're sick you get poked with needles a lot. Before my first treatment I had a port-a-cath surgically implanted in my body. It's this donut shaped device located over my right breast just under my skin that's attached to a tube that is inserted directly into my artery. It makes chemo infusions way easier and as a result there's less damage to the veins in the arm and less chance that the toxic chemicals will do tissue damage. So, after I got the port I thought I wouldn't have to get my arm poked anymore, but alas, I was wrong. Every time I go in for treatment they have to take blood samples to determine if I'm healthy enough for chemo. Every time I get a scan done I have to have an IV so they can inject me with dyes.

And here's the heart of this rant. Why can't they ever get it right?

Lab technicians are specially trained to draw blood, and most hospitals now employ people who are specially trained to insert IVs and rove around the hospital doing just that. So if these people are specifically trained in the fine art of needle poking, why do they still mess up my veins? Don't get me wrong, there are some who are masters of their craft. One tech at the Cancer Center ("Dann the Mann") has never once missed my vein, but of the two others one has missed it every time and one has missed it a couple of times. Today for my CT scan I had an IV inserted by one of those roving specialists, and this was the third time I'd seen this woman and the third time she's missed my vein.

Missing the vein or poking all the way through a vein hurts, some times it hurts a lot. Once about 10 years ago one of the nerves in my arm was pricked and damaged by a needle during a blood draw. It took about a year, a painful year, for the nerve to heal. Things are worse now because ever since my mastectomy I'm not allowed to have any pressure put on my left arm. No blood pressure cuffs and no turnicates allowed. So my right arm takes the full brunt of constant poking and frequent mishaps.

Today, as I'm nursing my aching arm and watching the bruise appear I wonder how it is that hospitals continue to employ people so completely incompetent at their job.

Spermologer

A person who studies sperm? Not exactly. It's either a person who collects and studies seeds or a person who collects trivia. I am well known for collecting bizarre, random, and often useless facts, for example, there are twelve different ways to break a $1 bill. The fact that perplexes me is whether or not it is correct to call a single fact a sperm. If this is so then why are sperm called sperm? Are they also random, useless facts? I imagine all the facts I know swimming about my head, their little tails propelling them through the fluid of my brain searching for something to impregnate. In a standard deck of playing cards, clubs is the only suit in which all three face cards have two eyes. Does this fact mean that I am already pregnant? Am I continually pregnant, each fact pushing me further along until some moment in the future when my swollen brain expels everything it knows? Or do I become pregnant with every single fact and give birth to that fact every time I impart it on others? Is one of my children the fact that Illinois Ave is the property landed on most in Monopoly? I've begun to feel the oppressive weight and responsibility of the facts. It is important that people know that the average person spends roughly three years of their life watching commercials, for knowing this fact might prevent it from actually happening. Trivia has also ruined my social life. When friends are up for a night of Trivial Pursuit, the first person they invite is the one that knows that Beethoven's 9th symphony is roughly 70 minutes long, and that's why the maximum recording time on a compact disk is 74 minutes. For every other social gathering, I'm the last on the list. No one wants to be around someone pregnant with facts for the fear that one of them might burst into an otherwise lighthearted conversation. I've begun hiding my facts, refusing to let them out. I'm dying to tell someone that Pez was originally a peppermint candy invented in Austria, and is short for pfefferimnz. I've become a secret reservoir of forgotten knowledge that the world is better off not knowing. My head is overflowing with sperm.

Fat and Puffy

Whenever I see another woman who is obviously undergoing chemotherapy I can tell just by looking at them whether they have breast cancer. It's not mystical; it's physical in that many of us look more like we've gorged on one too many McDonald's hamburgers then like we're undergoing chemo. This is due to many factors, the largest factor being that the chemo drugs used to specifically treat breast cancers tend to cause weight gain. In addition, there have been great strides in developing medications that ease or prevent the stomach problems that cause so many cancer patients to lose weight. I take four medications designed to make my stomach problems less severe. While I'm grateful to have these drugs, there's one drug I wish I didn't have to take. It's a steroid called Dexamethazone, and like many steroids, weight gain and swelling are unavoidable side-effects. In addition, chemo causes many pre-menopausal women to go into menopause with all of its related symptoms. On the plus side I no longer have periods on the negative side I have hot flashes and weight gain. If that wasn't enough, many of us suffer from Cushing's syndrome, a condition that causes swelling and puffiness. The end result is a chubby, puffy, and usually bald woman who can hardly recognize herself in the mirror anymore. For those of you participating in the Race for the Cure, be prepared to see a lot of women chubby, puffy, bald and decked out in pink.

What brought all of this on? A bizarre experience. I have a lot of those now. I'm like a pregnant woman that gets her stomach rubbed all the time by perfect strangers. They see my baldness and think social standards of personal space and privacy don't matter. My most recent bizarre experience happened in the middle of the mall. I was sitting by myself, resting and people watching while my sister-in-law finished shopping, when a woman came up to me and put her hand on my shoulder. "Do you have cancer?" she asked. It was a dumb question, and the answer in my head was, "No I'm making a fashion statement by shaving my head and my eyebrows and plucking my eyelashes." What I actually said was, simply, "Yes." Then she said, "I just saw two other women who have cancer." I knew who she was talking about because I saw them too. They were both fat, puffy, and bald like me. The woman continued, "I have cancer too." She was not fat, puffy, or bald and therefore either was just beginning treatment or she didn't have breast cancer. "It's rampant," she added. I was dumbfounded. Where had she been all her life that the fact that so many people have cancer was shocking to her? "Yes," I said, pausing for effect, "it is." To this she responded, "Well, God bless you." As an atheist I didn't really care if God blessed me, but out of politeness I was about to say, "You too," when she added, "And me too." Then she wandered off leaving me stunned. I couldn't believe she actually blessed herself.

Note: My friend Stephanie has pointed out to me that I should have been more sympathetic to the poor woman, who might have been recently diagnosed and a little overwhelmed. Stephanie is right and now I feel bad, but I promise to be more considerate in the future.

I Hate my Kitchen!

Let me describe my kitchen. I live in an old house in Seattle that is roughly 800 sq ft; in other words TINY. The kitchen is the largest room of the house, taking up about a third of the space. Large kitchens are usually a great bonus, but not in this case…in this case the kitchen is ineffectual and utterly irritating.

To start with, it has only one counter and the space is taken up by the sink and the dish rack I must have because there's no dishwasher (oh the agony!). The counter is also pretty useless because there is not a single outlet anywhere near it. No place for a toaster or a microwave. No place to make waffles or smoothies or mix cookie dough. So my appliances are scattered throughout the room on various pieces of furniture not intended to be in kitchens. The only viable work space for preparing anything is the small table we eat on, and it has to be dragged near the back wall to reach the outlet.

The second source of my frustration is the stove, an ancient 1960s retro monster. It has two small burners (one doesn't heat up all the way), one large burner (crooked), and instead of a second large burner it has a crock pot built in. The oven is small, has only one shelf, and doesn't maintain a constant temperature because the heat escapes from the door. The only thing that is good about the stove is that it is so large it has extra drawers to store pots and pans.

The third issue I have with the kitchen is that a portion of it is completely taken up by the back door, which must be open at all times. What? Let me explain. This lovely old house has the luxury of a laundry room because the owner decided to convert the back porch into an enclosed space. Unfortunately, they took two short cuts when they built it. The first is that they left the original back door in place, doorbell and all, and simply added a second back door. The second is that they didn't bother to insulate the room. So, the door from the laundry room to the kitchen has to be open all the time so that the pipes don't freeze (don't even get me started on what an expensive waste of energy this is). Now we could, theoretically, shut the door during the summer, but we'd need to open it to get in the house so the space behind it would still need to be left open.

My final complaint, and this is really what spawned this rant, is that this relatively large, spacious kitchen has a vast expanse of white no-wax floor. Dirt sticks to it, molds to it, becomes one with it, and it seems that no amount of scrubbing on ones knees for hours will ever get it clean. I have to use a special cleaner and within hours of cleaning it's dirty again. We could get rid of the cats and use the front door to come in the house, but even then I doubt it would make a difference. I spent a good part of today trying to clean the damn floor and I gave up with exhaustion after getting to about a quarter of it. Does that quarter look sparkling and new? Hell no! There's still dirt and grime that no amount of scrubbing can clean. As a perfectionist I find it exasperating that I can't get it clean, and I can only imagine how frustrated I'd be if I had OCD. As a chemotherapy patient I have to be satisfied with how it looks now because I simply do not have the energy to do any better. SIGH

Good news...or is it?

Okay let me recap; about a month ago my CT scan results were questionable. In the words of the specialist who looked at them: "The same or worse." Monday I had another scan and got the results on Wednesday, which are "The same or better." It is clear that the tumor is not growing out of control, and that's a good thing, but what the hell is going on? Well, it's tricky because the two remaining tumors on my liver are each about the size of a pin head. In my doctor's words, "The same person could look at these scans seven different times and get seven different measurements." I've progressed into a gray area where there's no way of knowing if the tumors are active or not. Even though they show up on the CT scan does not necessarily mean that they're alive. They could be empty husks left behind when the large tumor died, or they could be a few resilient cancer cells that are resisting the treatment but too starved to spread out. So, the plan now is the same as it has always been…same treatment and the same schedule with scans every couple of months. If there continues to be no change for several more months then I'll have to decide if I'm ready to stop the chemo and just do maintenance therapy to keep the cancer in remission. It's a scary concept because as soon as my body is no longer toxic soup, whatever cancer cells are still hanging around could then flourish and spread. Many cancer patients have a great deal of trouble transitioning because the fear is always there. The chances of a stage 4 cancer returning are extremely high, so learning to live with that reality will be a challenge in itself. I remember after I was diagnosed with Epilepsy in my teens that I spent a great deal of time in fear of my next seizure. To some degree I've come to terms with the fear, but every morning I still feel a twinge of it (I have waking seizures). The same will be true of cancer, but the difference is that a seizure is unlikely to kill me but cancer is definitely deadly.