Posts Tagged 'surgery'

A Guide for the Habitual Hospital Patient

After the very first surgery when my leg was sliced and diced, I came-to prematurely from my drug induced state, and I knew, this was not going to be my first and only time in this hospital. I wasn’t sure how soon or how many more times, but I knew within three seconds — in the most pain I have ever endured in my life — I knew this wasn’t over. I would not get out of having cancer this easy.

This same sentiment had occurred with my father, almost 30 years prior. In a morphine state after one of his brutal surgeries acting as a guinea pig at NIH, he saw the hallucination of neon words fall from the ceiling onto him YOU ARE GOING TO DIE. On his flight from Michigan back to NIH for further treatment, his plane lost two engines. The passengers panicked, and the woman seated next to him began to scream that they would all crash and die. My father sat calm and unmoved, he told her he had terminal cancer, and he wasn’t getting out of it this easy. She was stunned, but the plane made an emergency landing safely.

For seven years, I’ve been in bed enough against my will, that I have had a lifetime’s worth of vegging out to Netflix and scrolling social media feeds. But if you need advice on what to expect if you’ve never had to stay in a hospital, I can give you the lowdown on that. Welcome to Hell, I’ll be your tour guide!

In one surgery I tried to get off the table; in another I tried to pull the breathing tube out — which I vividly remember choking while the team of doctors kept slapping my hand away. In the recovery room after another surgery, I needed water desperately and tried to scream for help. I realized the room had emptied out because Oprah was on the floor and everyone wanted to see her; maybe they thought she’d give them a free car. Due to the fact I kept waking during surgery, I was then at times given too much anesthesia, which would result in my expelling black bile for up to ten hours. Around the sixth surgery, the portions were finally just right, and I was Goldilocks.

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If you think you will sleep in a hospital, I can guarantee that you will not. You will wake up every half hour if not more so. If you think you will even get two chapters into a book without being interrupted, you are also wrong. Vitals, tests, prescriptions, lung exercises, drainage tubes, and blood clot boots that I like to pretend are leg massagers, are just some of the things that await you. You’ll be woken by the gossip of nurses, the cleaning staff, and even hear screams in the distance from other patients having a rough go of it. You will be woken for meals you don’t want, and by counselors who ask an array of questions that you still can’t understand in a drug induced haze that never quite controls the pain.

One thing you will get very comfortable with after you’ve been a habitual patient is nudity. It’s hard to be bashful when dozens of people have had their fingers in every hole and crack in your body. The hospital gown that DvF designed for Cleveland Clinic patients is the least intuitive design that would confuse an origami artist let alone a medical professional. I had mooned my caretakers on multiple occasions and at one point limped along a hallway with my entire backside showing. This must have been a sad sight wearing my bright yellow hospital issue socks with slip grips that were two sizes too big. By the way, if you’ve ever considered yourself a fashionably dressed person, prepare yourself for those socks.

Nothing makes you feel worse than not being able to use the restroom on your own. It is a special act of humiliation no matter how many times you’ve been through it. The alternative of course, is a bed pan, but if you’ve been stitched up, this is hardly a painless act and you will opt for moving at a sloth pace to use a real toilet. After a few misfires – one of which ended with me peeing all over the floor – I learned to ease myself into hovering, which was a huge victory. The day you can use the toilet at will is the best day ever for one’s self-esteem.

When staying in a hospital overnight, be sure to have a plan of attack for when the food — and most importantly — the coffee, arrives at your bedside. If you think any of this is edible or that this coffee won’t destroy your insides, you are sorely mistaken. I learned to have a network of family and friends bring me Starbucks, milkshakes from a reputable source, and takeout from somewhere with a real chef. How are you to begin recovery if you are given a package of Dole fruit cocktail shipped in from China? I had learned to pack a small assortment of cosmetics, lip creams, and hand moisturizers. My nurses often wondered how it was I looked like a decent human after 3 days in a hospital bed on drugs. Maybe she’s born with it, maybe it’s dry shampoo!

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It took 3 hospital stays lasting 5 days each to finally get my cocktail right; a constant flow of Oxycodone, Valium and morphine. One nurse dubbed me the Morphine Rhino as my tolerance was ridiculous. In a morphine state I’d watch Bravo TV shows where everything was a fashion crisis. On one episode of The Rachel Zoe Project, the world was literally going to end because it would be raining during the Golden Globes red carpet event, and Camera Diaz might need a man in a tux to hold an umbrella. You would have thought this was worse than genocide, and I started laughing uncontrollably, “Your problems are HUGE!”

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When your cocktail is figured out, you can finally be comfortable enough to concentrate on your other problems. For me, it almost always came down to one: The Roommate!

I had a succession of roommates who irked me enough that I wanted to smother them with a pillow but killing a patient in a hospital probably wouldn’t go over very well, and besides, I am usually marked as a fall risk.

Sometimes you luck out and have a solo room. I was once installed in what I called “The Donatella Versace Suite” a room so large that I could have thrown a party ala Breakfast at Tiffany’s. However, this is an exception not the rule. When I hear the that Saudi royalty will reserve entire floors at Cleveland Clinic I think, man — they are really onto something. I wonder if that’s what the Kardashians do?

There was the roomie who had a parade of family members in our tiny space at all hours. A snaking line of teenagers slouched over texting, cousins and in-laws, most who clearly didn’t want to be there but felt a deep Protestant duty while wondering where the nearest McDonald’s was. There was the roomie who ignored every warning and instruction, then fell in the night rendering her new knee replacement useless — and earning herself another replacement. There was the roomie who wouldn’t stop talking about her ailments to me through a curtain; how many times her hips, knees, and ankles had been done and she had no intention of going on that diabetic diet. A salad?! What were they crazy?! My roommates wouldn’t stop asking for food, even straight from surgery screaming for chocolate cake, tapioca pudding, and salted crackers. It was sun up to sun down –- I mean, Jesus did these people ever stop eating?

My favorite roomie of my tour of hospital stays was the nurse. As you can probably imagine, nurses make the worst patients. She had decided she hated the entire hospital staff, and me. She blamed my regular vitals as the reason she couldn’t sleep. Everyone was wrong, and everyone was out to ruin her life. To say she was combative with medical professionals would be an understatement. When I dropped a pencil and her sweet mother picked it up off the floor for me, you would think her mother had committed treason! Though I was sleep deprived, I delighted in her misery as I showed off my good coffee, French hand cream, and agile ability to scoot to the toilet all by myself.

Your hell might be better or worse during your hospital stay, but at least now you can be prepared. I wish I could tell you that doing it often makes it easier.

 

 

 

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Bionic Leg

I had the rod put in from my hip to my knee. It has sucked and I’m still on a walker. It appears I had two fractures as a result from the radiation weakening my femur; one was right at the hip and it is a good thing it was caught. This time I had both my main squeeze surgeon and his son work on me.

For the first 9 hours after surgery I couldn’t stop throwing up. I’ll say nausea is worse than metal rod pain and knee reconfiguration. It appears morphine is like aspirin to me; I need 2-3x more than normal people and am super chatty and coherent if just on normal dosage. Maybe next time I can get Rhino tranquilizer?

I almost killed two of the three hospital roommates I had. If you ever want motivation to not be a fat piece of crap who guzzles tapioca pudding straight out of surgery, then hang out in an orthopedic recovery hospital floor for a day. Again, I was the only non-diabetic who hadn’t had my joints done multiple times over. I cried when I had to move to the edge of the bed the first time, but I was getting up (it took ages but I did it) to use the bathroom by day 2 because I wasn’t going to be humiliated by a bed pan production. Not these people! They wouldn’t even sit up! Or eat a vegetable. Or stop asking for butter. Or pudding. When one roommate was out for tests, her own family sat in her hospital bed eating her crap food (complaining about it, but still eating it) and watched “Cugo” on the TV at full blast while I was attempting sleep, until my husband got up and told them to shut the fuck up. It was a far cry from my Donatella Versace suite from 6 months ago. A lesson learned? Get surgery early in the week! The A-team nurse staff and weekend staff are two different experiences. Maybe 6 months ago I wouldn’t have almost died from kidney failure if my surgery had been done on a Monday.

Various family and friends drove and flew in. My husband is a bit exhausted from these things that keep happening so it was nice for him to not have to do EVERYTHING and then go to work on top of it while I can’t move much. My cats liked all the action, too. Thanks to those that sent gifts and made contributions, it has made me smile in-between my catatonic derpy state of being awake or asleep or reading.

Here’s some photos. I spared any hip photos because they are gross and bloody. FYI, this dry shampoo is a must! Nurses kept asking how my hair looked so good after all that time….

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This better do the trick!

Cancer Is Just Slightly Annoying

So as some of you may know, I’ve gotten sick again, and only now finally after almost 2 months is it being taken care of in full. I’m having 3 surgeries done at once (possibly 4 in the worst case scenario, and it’s a really bad one so I don’t even wanna think about it), and I’m hoping that will be the end of it. Sure, I’m going to have annoying side effects for some years to come, but I’ll gladly take them right now.

Despite the “greatest healthcare system” in the world, it still took the initiative of ordering my own ultrasound to find out I was in serious trouble even though I’m not even 4 years out of having cancer the last time. I’ve had 3 doctors more scared I would sue them than the fact I can’t stand up straight + am carrying a growing mass the size of a baseball in my gut; 2 oncologists; tests that were never ordered; scans that got delayed; scans that were read wrong; consent forms that went missing; orders not put in because someone went on vacation; surprise tubes shoved up my butt at 9am; giving my entire family medical history for the 6th time to a guy who was texting and getting snarky with me about the proper name of my syndrome; and having to fight to even get a prescription for the baby sissy Xanax when I freaked out crying in my car — and I’m not a crier.

Oh, did I mention I have more tests next week I have to do, and my surgery isn’t until the 28th now because someone forgot to book it? And, I was told not to pay attention to the online MyChart as for directions and schedules because it is “not accurate” and “kind of messed up” as opposed to what I’ll be getting via UPS from the actual surgical team. Man, when Cleveland Clinic can’t even have a reliable website, that’s kind of screwy!

ANYWAY, thank you all for the encouragement and mutual outrage you’ve been feeling along with me as I’ve been dealing with this bureaucratic nightmare. I don’t understand it; this has been an experience that is almost the opposite of when I had the liposarcoma. Mercury retrograde? Shitty start to the year?  Who knows? It’s actually been a really crappy 2 months for just about all of my friends. The running joke — although I’m serious about it — is for us all to take a Xanax, have a Botox party, and then go to a crappy dive in Cleveland for karaoke. That’s my idea of fun right now.

In the meantime, I’m just going to do what I need to do for my art shows and my husband’s book tour, and read some of these books. I’m so paralyzed by anxiety, anger, and a general “I Don’t Care About Anything Anymore!!!” feeling that the best I can do is just be like a catatonic 19th Century British aristocrat, and get on with it. I knew this disease wasn’t done with me the second I awoke after the surgery on my leg — I just knew it! I didn’t think I’d be back into the mix so soon, though.

Welcome to Hell, I’ll Be Your Tour Guide!

I’ve clocked in over 60 trips to the Cleveland Clinic Main Campus since June of last year. I find it horrifying that there are patients who have done even more than that! Most people have to travel a lot further than me — some from other states, or countries. When you have to go there often, and for many different things, you get to know the place really well. It has become routine, and it’s almost like a part-time job. The cruel irony is that I applied for a job in the art department — the whack-ass online system probably didn’t even register my resume, I doubt — and this was right before I got diagnosed!

Being that I still have to go there for the foreseeable future, I wish I could get a job with them that was like being an information desk tailored for grumpy people who are all, “oh fuck this being sick shit, I can’t believe I have to be here!“. You know, people like me who swear a lot and just want the real info, but with some surly humor, and maybe a little less of that fake compassion I encounter. I know the place too well, and being that it is laid out almost like a city, I think people would appreciate it.

You want diagnostic radiology? There it is, go see those motherfuckers, don’t bother locking up those lockers from 1977, they stick and you’ll never get your clothes back.

You want sushi? Go down to this floor by the valet dudes, it’s next to the fancy bathrooms that aren’t crowded. Oh, you want expensive sushi? There’s the fancy-ass restaurant. Maybe you’ll see a sheik, or Oprah in that bitch.

Want radiation? You want the old ass part of the complex on the 2nd floor. They’re real nice, they have the good magazines and some of the better art.

Parking that isn’t a bitch? You are shit out of luck on that one buddy, and all the handicapped spaces are taken with fatties who need a walker because they ate too much pie. But the parking garage on 100th street ain’t bad by the 3rd floor.

You need an MRI? here’s the fastest way to get there, those bitches are in the basement across the street and it’s all complicated to get down there. The TV doesn’t work in the waiting room. Bring an iPod too.

Need your eyes looked over? There’s the Cole Eye Institute across that street there, take the skyway!

Need a scented candle? The gift shop by the big Starbucks’s has all that holistic and organic bullshit.

Don’t bother going to the main Starbuck’s around noon, the line will be out the door.

Want to see droids in action? Go down to the basement of the Miller Building where you get the CT scans done; they got those fuckers hauling medical equipment and shit! They take corners and everything! Don’t get in the way, they might run over your foot.

Need to drop a deuce in a quiet area? There’s a tiny bathroom en route to the Taussig Cancer Institute, right by the creaky elevator, and the Andrea Joki artwork.

Wanna excellent view of the city? Go to the top of the Miller Pavilion, it’s fucking beautiful…for a rust belt town.

Wanna look at some photos of puppies in sweaters? In the main lobby by the electric tree — you can’t miss it!

Dying for a copy of Arthritis Magazine? Desk A41 waiting area has tons!

Need to park your RV? There’s a whole lot just for you off Chester Ave! You can BBQ and swap road stories with other RVing bitches who hang out at the clinic.

Need a cane?  go to the pharmacy hidden inside the Euclid Ave parking garage. They tend to be surly at that one, so watch out for those bitches.

Farmer’s Market? Yup they have one on the lawns in front of the Crile building. Go buy some blueberries or some other anti-oxident shit.

Getting surgery done? There’s a parking for the Surgical Center, it’s all hidden, and make sure your family members or spouse get a pager, because God knows the nurses won’t actually call their cell phone when you’ve been out of surgery for hours. FYI all the food is from Stouffer’s, and don’t get the pizza — that shit is tiny.

Wanna take a nap between appointments? Do it in the big ass lobby by the electric tree, the leather chairs are comfy; that’s where most people nap anyways, so don’t be a dick and talk all loud on your cell phone.

You want a banana? The Au Bon Pain in the Crile Building has tons. Go eat one of those motherfuckers.

Need a massage? Reflexology? A gym? Need to test your sperm? Chemo? A bone scan? Chest x-ray? Need your veins looked at? A good glass of wine? I know where you do all of that!

See, I think people need to know these things. Ask me where anything is, I’m like a damn rolodex of information and bitchy sarcasm when it comes to the clinic. Would you have it any other way?

Dusting Off the High Heels

One of the big things I was worried about after my whole knee/thigh surgery was that I would never be able to wear high heels again. Really worried! No, like, I seriously cried about it and was going to throw a serious fit if told I may as well sell or give away my shoe collection. Thankfully, wearing heels hasn’t been an issue…most of the time. It still pulls on nerves, and because my hamstring got moved (among other icky thing done to my muscles) there’s really no way I’ll ever be able to go out in tall heels and dance, or walk more than 3 blocks, or run across an airport in them with no problem like I used to. Stairs are an issue for me even in flats, so that’s something that takes an eternity as well.

I bought these super slutty Kelsi Dagger shoes right before I was handed the news of having leg cancer, so I wore them on my last weekend before the surgery. On Saturday for my birthday I decided to wear them again. I still had to use the cane — I would have fallen to my death otherwise — but to be honest, I probably walk better in these things than most women who don’t have a missing thigh chunk!

I did have to take them off at one point, when I realized I need to walk a short distance, but at least I did it long enough where I feel I don’t need to give them away or retire them completely. Just make sure you are hopping straight out of a cab or car on your way to dinner if you wear something like these. In fact, I recommend them for sitting as a rule. Lots and lots of sitting. They also keep your ankles quite warm.

Cancer-free

After over 5 days in the hospital and a complicated 4 hour surgery, I am now cancer-free but at a price I hadn’t counted on. Aside from the huge section of my thigh being removed, I have some empty spaces, muscles moved around, and ham-string repositioned which feels really weird. I can bend my knee in 10 days, and will be at full operating capacity in 6 months. I will, however, always have a bit of a funky walk, and may need a cane for the rest of my life. Hoping this will close my Summer of Suck for good.

I had no idea the stress and complicated nature of this surgery going in. I don’t think I have ever screamed or cried for 2 days straight like I did last Friday and Saturday. I remember 4 or 5 people standing over me at one point asking, “why is she screaming so much? This shouldn’t be making her scream like this.” It also took 2 days for nurses to realize my pain pump meds were what was making me throw-up and want to never eat again. They don’t mess around at Cleveland Clinic, they made me sit up and try to walk the next day — which made me faint. They also showed me the end result of what my leg looks like now — I fainted again. Thankfully I could watch HGTV and Bravo to rot my brain and laugh at what everyone perceived to be drama or a problem in their lives. Rachel Zoe freaking out because it was raining on the day of the Golden Globes — oh my goodness — her problems are huge. Which $435,000 condo will the couple choose on an episode of “House Hunters International”? The suspense! I tell ‘ya, morphine makes these shows even better.

My recovery would have gone better if it weren’t for the fact that sleep is something one never actually gets in a hospital. In my case, it was more so because of my awful roommates. Not only did the 1st one need the thermostat set to 85 at all times, had a need to eat crackers constantly, called for help because the helicopters landing outside “scared her”, and talked non-stop about her medical history, but she called on nurses for EVERYTHING literally every 10 minutes. This is on top of them waking you ever hour for vitals, and breakfast being served at 6am. Despite the signs posted everywhere to not get out of bed alone, she went and fell in the bathroom after her knee surgery; broken toe and head trauma obtained. She still got released before me. My second roomie was no better, in fact, worse. My husband was ready to smother her with a pillow. We thought she was 85 but turned out to be only 62 — proof you can be old in mind and body. She called nurses every 5 minutes and always needed an audience — especially when discussing football (kill me). “Are there always 2-7 people in your room like this? Every time I come here it is chaotic”, said my doctor. The staff in turn, loved me, because I was probably the most easy going patient on the floor, (okay except the incident where I accidentally pee’d on the floor but whatever) enough so that they gave me flowers and always wanted to just chat (and how they do their job without throwing a fit is beyond me, very admirable). There were fears of blood clots in my leg due to the fact my heart rate had never gone down since surgery; after tests and assessments of my hospital room and roommates, it was determined my heart rate never went down because I never got a second alone or more than 10 minutes of sleep at a time for 5 fucking days!

So I’m finally home and able to sleep. I’m doing well enough that I don’t need at-home care or physical therapy, or so I was told . My husband however, has had his hands full. I have a walker, but can’t do most things by myself and am stuck in bed. He has to change my bandages, drain my blood, give me injections, measure fluids, time my medications, and all while the cats are sick and shitting blood. That he has newly discovered nursing and cooking skills are a plus. In the meantime I will be reading lots, and showing work in a few shows this fall in DC and Cleveland; nothing new will be created for the foreseeable future until I can walk again.


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