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!

Only One Leg To Stand On

I’ve been told I need yet another surgery. This time, a rod is to be put through from my ball socket of the femur down through to almost the knee. It appears my leg is about to break in pieces and the radiation I withstood to soften the cancer has taken its toll. I’m of a small percentage where people with radiation like that never recover. I was going to x-rays every 3 months, then 6 months, and this was my first one in a year. I thought it was all going to be fine since I got pushed to a yearly check-up after the last biopsy and MRI. But no. It’s so bad I’m supposed to be on crutches right now until the rod gets put in.

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A few people have asked and I need to clear some things up:

No, I’m not going somewhere other than Cleveland Clinic. I have my oncology surgeon who did my leg originally; my botched surgery 6 months ago was a whole other department and team. And really, that fiasco was down to shitty nurses who didn’t listen.

No, I’m not going out of state to another medical center. How on earth does anyone think I will get home with limited mobility, let alone the paperwork nightmare and the fact insurance doesn’t cover you out of network? Where will my husband stay? I had to cancel a DRIVING vacation to Canada because I couldn’t afford it this summer, ferchrisake. I mean, come on.

No, calcium and drinking milk won’t make it better.

No, the bone won’t heal itself (that’s kind of the whole point) and radiation after effects complicates the situation when metal gets involved.

Femur fractures are somewhat common, so this isn’t a dodgy operation like my first leg surgery was.

No, this has nothing to do with my knee or my missing muscles; this isn’t going to make me walk “better” it is just reinforcement to make sure the bone doesn’t shatter inside, because if it does, that means the leg gets amputated.

I know people have good intentions, but don’t you dare send me any related articles, WebMD posts, or lecture me about an all-natural organic hippie diet.

To be honest, I know I handle this crap with humor most of the time, but I’m tired. There are more things I’m getting checked up on in December and this came out of nowhere disrupting everything. I’m done. I don’t even know what to say anymore. I guess I shouldn’t have thrown out my walker last year.

Art in Medical Arts: Show It, Don’t Tell It

Studying anatomy was never something that I took seriously or practiced much in art school. In fact, I kind of sucked at it. So as a result I’ve gone with a very mannerist approach with distorting anatomy of my figures here and there.  It is all very strange, considering my new fascination the last four years is with detailed and gorgeous medical illustrations of the 17th and 18th centuries. They reveal what fragile beings we truly are, and yet the macabre and gruesome nature of the subject is surrounded by baroque columns and fussy drapery worthy of an aristocratic country house. Although they might be gorgeous, these illustrations were meant only for an elite set of physicians, not the patient. Today, technology has made it easier for patients to have a doctor show them what is happening, not just tell them. This is especially helpful for someone like myself, who thinks in pictures, not words.

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My work changed drastically in two ways in 2010. The first was when I found myself creating surreal biomorphic organisms. Although I started from a place of abstraction, they became filled with strange hybrids of flowers, cells, and symbols that appeared like organisms from another planet. It was only later that I found out I had a tumor that had grown tentacles crawling through my body at an alarming rate. When my doctor showed me the scans, it looked almost identical to what I had been painting – tentacles and all. In the process of being treated for what was a rare and aggressive cancer, I wondered what it would have been like to endure the cures and surgeries of the past — especially as a women. Here at Cleveland Clinic I got used to being poked, prodded, getting naked, and having fingers in…well, all the places you could imagine! But, a few centuries ago if I were a woman of means, doctors wouldn’t dare do such things except a very superficial examination. Modesty over accuracy.

After having a chunk of my leg removed — as well as some interesting restructuring– my work changed a second way. I began researching medicine from the Middle Ages onward; finding paintings that showed even the “cure” for my particular cancer was still amputation. Artwork depicting Saints Cosmas and Damian were the first I came upon, and none of it was reassuring. This all bred a series which I called “Ephemeral Antidotes” was a good way for me to work out my anger and be even more thankful that what I was going through is nothing compared to old remedies and techniques. It makes one wonder which medical practices today will be viewed as cruel and obscene to future generations. Will we be lambasted in 20 years for chemotherapy? It is injecting poison directly into a person’s veins, after all, so how is that different from the doses of mercury people took for syphilis? The emotional content was too much to resist.

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Both series bring together a new interest in medical illustration, microbiology, disease, and the evolution of cells. I explore the particular roles that organisms, medicine, DNA, and hybrids play, all while creating from my own imagination and instinct. I have since painted yet more tissues and masses that resemble what is found to be growing inside me; perhaps this is a bizarre way of attempting to control the cells and viruses in my body.

Transforming those emotional impressions and having it stare back at me on an MRI has been quite an experience and highlights the importance of images for both medical professionals and patients. What the patient says is the truth, might not be what the body reveals as the truth. Perhaps this is why more medical schools are looking at applicants with artistic skills such as drawing and painting? Medical illustration has enlightened us that the human body is a machine; enzymes, cells, viruses, and tissues. I don’t know if each of these entities has a mind of its own, but I have learned to look objectively and be slightly detached when it comes to the viewing of human bodies and their inner workings; it lessens the rage I feel at times whenever my health takes a bad turn (a regular occurance these days), and helps me to understand my own body better. This is especially useful when I come upon an imaging tech who assumes I don’t know what I’m looking at. In fact, these days I’m often asked if I work in radiology, or am a nurse myself.

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A new section of my library is forming.

Once my surgeons and oncologists learned I was an artist, they steered away from saying in words what was happening to me in too much detail. Instead, they say, “Come over I want to show you these images because I know you’ll understand.” And it is true, it will be something I spot right away but would have been difficult to explain over the phone.

By the way, after all these years painting people and looking at medical art, I still suck at anatomy.

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Down To the Wire!

I finished the paintings and the stories!

I could still spend another few weeks “correcting” and tweaking them, but I guess that won’t be happening. I have never, ever, worked this close up to a show. I don’t like the feeling at all! Good thing I use Gamvar varnish that dries quickly.

Big thanks to CoolCleveland.com for the interview, and The Plain Dealer for the highlight on the show opening this Friday! And, if you are not able to make it to the opening reception, never fear, as I will be giving a gallery talk on Wednesday the 9th which is sure to be entertaining. I’m considering getting a skull cake for it (or maybe a heart or a spleen), but we’ll see.

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“In Scorpio” 20×20 inches oil on linen.

 

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.

Science and Surrealism

A few books I’m reading, and some paintings I’m painting.

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The irony is not lost on me that I went in for a consultation about an elective surgery, and now, it’s turned into a very needed oncology surgery — all while prepping for this show. It’s been a sucky week thus far, and yet I’m not bothered by pictures of anatomy and cadavers. I don’t know what else to do, really.

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My surgeon never calls me unless it is something…important. Bad important. He called me on Monday and said he couldn’t explain over the phone, but I had to come in right away to get more x-rays and so he could show me in person what he was talking about. After my MRI that went wrong (torn vein + allergic reaction), the results came back. The are unsettling to say the least.

I could see it on the x-rays before he even said what it was. I have a hole in the lateral cortex of my femur, it looked about an inch long. It looked like a dark lesion, and it is about where the tumor was taken over 2 years ago. It appeared out of nowhere — like everything else — since my last x-ray in the fall. But the hole isn’t the part that is unsettling, it is what is inside of it. A white dot. It isn’t communicating with the outside and they have no idea what it is. Several meetings, a dozen other experts, and more radiology opinions — no one knows what the hell it is! My surgeon/oncologist doesn’t like not being able to explain what something is!

I am staying off the leg as much as possible (I knew it was fragile, but Jeez) and am prepping for a procedure to have them go in and see what the white dot is. A biopsy-like thing, but not quite, since there is nothing that they can take to put under a microscope. I’ll get put under while they poke through my bone and see what this thing is. I was told it would be benign, but I heard that before, remember?

This has set me off into a depression and freak-out that has already caused a chunk of my eyebrows to fall out; I missed a lot of events this week, have had a cold for 2 weeks, and to top it off a funeral planning service called me at home not 30 minutes after I got the news! Until they go into my leg, however, I can only wait. If this is something that keeps occurring I know that full amputation isn’t far off.

Below is a CBS piece on  my dad and his battle with cancer, that also came quick. It’s my TV debut at age five! I wish I could tell you it had a happy ending.

Have I Mentioned Cancer Sucks, Lately?

I have a few friends who have had their own cancer battles recently. They are keeping track of odd anniversaries they way I did, except now, I’m trying to forget those anniversaries. Obviously the day I was told I had a tumor in my leg is hard to forget, because it was on my birthday. But the rest, I try to forget and I don’t want to keep track anymore. Let’s just say September is a month I have grown to loathe;  it’s not only when I had the surgery to remove my thigh, but when my father died of cancer as well. I understand they want to keep track as a form of achievement, but I guess I just don’t want to be reminded. I get enough reminding.

Since June of 2010 I feel like I have been to a doctor’s office or the Cleveland Clinic main campus at least once every 2 weeks — that’s not even counting the daily visits I had for a summer. I’m sure if I look through my appointments, it would average out to that. I have had complications with my lady parts thanks to the cancer, as well as invasive procedures and more testing of my DNA. Did I tell you that my new exciting cancer syndrome may eventually be named “Proffer Syndrome”? It’s true, because they can’t keep saying “it’s like Lynch Syndrome” for long before the insurance company wonders how they hell they are supposed to bill it. We’ll know it’s official if you go to Wikipedia and there’s either a picture of me, my dad, or a close-up of cells from my samples given. Oh yes, my DNA is in an official database now, too. Maybe they’ll engineer some cancer-proof wolverines or something. I’m due for another preventative procedure on top of surgeries being discussed for down the line, but I decided against it. Frankly, I’m too middle class to afford this ongoing medical maintenance anymore.

Everything was going fine lately; I opted out of using my cane a lot of the time because it’s a real pain in the ass to carry everywhere. Have you ever tried to hold a cocktail glass, a purse, a cane, and try to shake people’s hands? I started swimming, doing the treadmill, I was doing more things in a normal way. My back has been a real problem (like having to leave events early because I need to lie flat somewhere), but aside from that my only mobility issues still being that I won’t ever be able to run, inclines hurt, and doing stairs like a toddler. Seeing a long flight of stairs still gives me a scare — especially if I’m in high heels.

Everything was dandy, until late Friday night. All I did was get up from a chair and then pop-pop-pop-pop-pop-pop! And suddenly I was half standing while everything inside my knee and my re-structured hamstring fell apart. It felt like the opening scene from Prometheus when the alien DNA starts to melt and unravel. As I stood, I realized my knee was not aligned, and as I was sobbing in a fit of panic, it suddenly shifted back into place. My hamstring has been in pain about as bad as it was post-surgery. Thank God for my doctor answering a page to get me vicodin until my x-rays tomorrow. So much for me trying to forget and pretend I don’t have something missing from my leg; and it’s true that almost anytime I try to act like nothing is wrong or be a hero, it will throw something in my face to show me all is not normal.

On the phone today, my surgeon’s nurse said, “knees are a problem, and it only gets worse the older you get. You can’t act like you can do anything normal from now on, and you aren’t even old, so imagine later down the line”. This was exactly why I was sobbing so bad as my husband held me not knowing what to do after the whole episode — what am I going to do when I’m older and he’s not there? The whole thing happened so fast, and really all I needed at that point was something to make me sleep through the pain of the trauma, but what if I hadn’t caught the table and had fallen? Hell, what am I going to do when my surgeon retires? Because he’s the only one who knows specifically what he did to that leg! My surgery was not a normal one by any means, and I was lucky to have the best man in the world to do it. I’m told my case is unusual in that he made it so I can feel my foot!

If this is the kind of thing I am going to deal with at 34, what about when I’m 70? 80? My husband is 14 years older than me, and I can tell you right now that there’s no way I’ll have a retirement stashed enough to be at a robot cabana boy retirement home after he’s gone. He said to me that night, “well, I just won’t die then”, which was actually kind of romantic. He sort of is a vampire (anyone who has met him and then finds out his age can attest to that), so maybe he can pull it off?

Have I mentioned that cancer sucks, lately? Well, it does!

Attitude and Cancer? I’ll Take Science

One thing that has irritated me for the past few years is when I get advice or remarks from people about how “mind over matter” or holistic approaches may have/may aid in all the cancer bullshit I’ve had.

I’m currently waiting for my DNA results (no, unlike the movies you have to wait 6 weeks) to see what the diagnosis is with which syndrome I have. My mom and I already know, but doctors need it to assess the situation as far as my continued care. I’m already needing an organ removed as a precaution, and other complications have popped up that will always have to be monitored. It’s a DNA issue all around; it was pre-programmed, and getting cancer was going to happen to me no matter how I tried to avoid it.

As well meaning as it may sound, flippant remarks and pontification with regard to someone who has a pretty severe case of an advanced disease is just plain idiotic. I’d like it stop. That my “good attitude” saved me, that “God” had something to do with it; that maybe I got cancer because I smoked, drank, did drugs in high school and college. Keith Richards says you are wrong. Maybe I ate too much processed foods, too much meat, or my milk had additives. Monsanto didn’t give me liposarcoma! When I get people telling me, “I hear coffee helps prevent cancer” or “tomatoes are supposed to help fight cancer” I want to smack them with a 2×4. Listen, I eat tomatoes almost every fucking day (it’s weird, I have a thing for tomatoes), and I’ve been drinking coffee since I was 21. So no, it didn’t help. Acupuncture, ginger root, reiki and all of the crap that the Whole Foods going crowd tells me to do? Guess what, I had it all done at some point in time. It doesn’t now — nor did it then — aid in fighting cancer cells. I’m not going to go and spend money I don’t have (thanks to medical bills) on your Chinese medicine hoo-ha or color therapy practitioner in hopes it will stave off anything. It won’t. I actually had someone tell me I should try to avoid radiation because it was *bad for me* and try a more holistic approach. Clearly this person was an idiot with no understanding about aggressive cancers, and they didn’t seem to get that having a massive tumor with tentacles crawling through my leg, then dying, was also bad for me. “Maybe you should meditate”, no I’m pretty sure wine helped me not have a freak-out during my treatments. It was either that or Xanax, and my oncologist said wine was an awesome choice.

A sense of humor and a sassy attitude didn’t save me. In fact, I’m pretty sure timing, lasers, the top surgeon in the world for my case, and SCIENCE saved me. Attitude had nothing to do with it. Radiation and slicing me open = winning! In fact doctors kept telling me youth was a major factor as well.

So the next person who tells me about their herbalist, or an article they read in some stupid magazine about what foods I should be eating? Well, they can suck it. Would you tell someone with a broken spine to drink mint tea and get their chakras aligned? No.

Viva la SCIENCE!

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.