My Anti-Crowdfunding Art Sale

I’ve been pestered to do a GoFundMe or something similar for the last four years since my cancer-related surgeries seem never ending. I just had my second one in 6 months months, and it sucks. My freelance job as a transcriptionist suffered when I lost my main client in March because, well, I was too drugged up or recovering from something every single time they needed me — I kid you not, every. single. time. My commissions were rocking this summer (thankfully), I was able to teach a few classes, and I did do a lot of transcribing work with my other writers and journalists. But, as you can see, my medical issues come out of nowhere almost all the time and it is nearly impossible for me to make up for it when I’m out for even a few weeks let alone the bills when they roll in. I’m on a payment plan with Cleveland Clinic and boy do they get nasty when you get new charges! What’s worse is my mobility is even more compromised now. Well, actually, no. What’s worse is that Rob Ford is now the poster child of my rare form of cancer. “What’s liposarcoma? Oh, the thing the drunken crack head Toronto mayor has in his ass”, yeah and by the way I’m really glad I don’t have his doctors because it has already been proven the last 5 years chemo doesn’t work on it. Poor Rob, what a character.

ANYWAY….

People ask what they can do to help (many of you already have so thank you!) and all I can tell you is support my work. I don’t like the idea of charity or whatnot without you getting something in return. So, for the short-term I decided….. I’m having a crazy sale and contest!

On Saturday, November 15th at 11:00 am EST I’ll be selling quite a number of drawings and paintings on paper for between $25-$50 (shipping included within the USA). These will be posted on my fundraiser page that will appear at www.ArabellaProffer.com  I’ve got some goodies in mind; fashion illustrations, oil on paper works, and even some small ink works I did under Raymond Pettibon!

For those who purchase, you will automatically be entered to win this framed watercolor, “Hoodlum” 13×18″….

HoodlumFramedProffer

IkeandArt

And a second runner-up will get my Ephemeral Antidotes 2012 catalog and a set of these new stickers….

ArabellaProfferstickers

So that’s the scoop. Mark your calendars.

And if you feel like it, I have other items and ways you can support my art. And, if you hate art, you can purchase a book, 7 inch, or CD from my record label, Elephant Stone!

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.

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.

Me in 2013, My Dad in 1983

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.

My End Result of Leg Cancer

I leave for Los Angeles and Orange Country tomorrow to visit friends and family (thanks to Knitgrrl for the hook-up!) and it couldn’t come at a better time.

After a follow-up oncology appointment I was informed that thanks to the radiation and scar tissue, my leg is pretty much as good as it is ever going to get. I have a horrible peg-leg wooden feeling, it keeps shifting shape, and my knee will never bend past what I can do now. No yoga for me it seems. This is on top of the fact I have to treat it delicate and make sure I’m not clumsy or let things slam into it. The problem I have going up and down stairs and pain it induces will also continue — always. When you have muscle and tissue removed, as well as rearranged and transplanted veins and such, on top of radiation, well, I guess nothing will ever feel, work, or look the same. My legs used to be one of my main assets (can’t tell you how many times even gay men have said they wanted me to wrap my legs around them!), and now that’s been taken from me too. Of course my doctor thinks I’m doing great and it was better than they had hoped it would turn out, but to me it is plain terrible and limiting. There are also other fun repercussions that I won’t get into, but you get the point.

So now I’ve become that person — yes that person — who gives YOU the stink eye when you take the last handicapped parking spot (I swear everyone in Ohio has a handicapped parking permit because they eat too much pie!) and strut out with your able bodied self because you borrowed your mother’s SUV and are a lazy piece of crap that you can’t walk 20 extra feet. I’m also now the jerk that stands there giving you the stink eye when you use the handicapped bathroom stall when others are free. Because yes, I sadly have trouble with normal toilet stalls. So there you go.

I hope someone like Daphne Guinness makes having a walking stick the new accessory. I really hate Edwardian clothing but perhaps that aspect could come back into fashion? Because really the rest is rather awful…

I’ve gotten very good at pointing at things and people with my cane. “You there!” and “What’s all this then?” have also been added to my lexicon. Now I have to practice being even snarkier and completely domineering. By the time I’m an old lady I’ll be as good as Dr. House, or perhaps Charlotte’s mother in “Now Voyager”.

From Invalid to Menacing Cool

I was totally floored to find out that my friend Josh over at the art website www.creepmachine.com went and wrangled up my friends, family, and collectors to donate money for one of these amazing and luxurious canes for me.

Thank you all who donated! Seriously! I still don’t know exactly what color of animal I’m getting, but it will have a sword inside (yeah-yeah I’ll detach it when I fly) and I’m assuming will be a feline of sorts, like this…

www.borispalatnik.com is located not far from here in Cleveland and does some amazing pieces. My friend Paulius actually has one with a frog head, it was gorgeous. Truthfully when I joked about getting one of these I thought the need for a cane would be a very temporary thing, but recently I was told I’d probably need one for real, always. So hey, if I’m going to have a cane the rest of my life, might as well be a fancy one. Pair it with my black trench coat, and I’ll look very Edwardian while being mildly dangerous. I promised Josh I wouldn’t leave in the back of a taxi cab.

So now for the bad news. After the thigh was removed and reconstructed, there was a close margin that was questionable: I need MORE radiation. Not as much as I had been getting, but still. There is also a chance that cancer cells already escaped into my blood stream and are hiding out in or near my lungs. I was given a 50/50 chance of the cancer coming back in my lungs over my lifetime. Frankly, I had a feeling this was true all along.

I also need to undergo a procedure where I am put to sleep while doctors bend my knee for me and crack it. It appears that if I were awake, the pain would be too awful and traumatic. Right now 45 degree angle is as much as I can barely do. So yay, another hospital stay overnight just for that, plus a machine I’ll need to take home. Who knew this would all turn into such a production? None of this will happen for three weeks for my skin might literally rip open. Three more weeks of sitting in bed and unable to walk or drive. I’m mad I’ll be missing a lot of events and my favorite time of year — I even had to turn down a teaching gig — but my main goal is to be better enough to travel to North Carolina in December. If I miss that, I will be very mad indeed.

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.

Getting Butchered

Not that I want to use this blog to be Captain Bring-Down about my situation, but it appears many people are using it to follow what is happening with my cancer bullshit — so here’s the new scoop.

After 8+ hours of testing this week, it was determined my tumor was more aggressive than expected, and has already begun to gain ground after only a few weeks off of radiation. It is an asshole. Chemo will not work for my type of cancer, so I was told the solution: they are cutting away half of my outer thigh, all the way into my femur.

I knew that some muscle and tissue would be taken, but I was not prepared for how much. This was the first time I ever started to cry in front of a medical staff and I am not a weepy chick at all. I was told the tumor will just keep coming back over my lifetime if they don’t remove everything around it as far out as they can. The tissue will never grow back because of the radiation, either. Needless to say I’ve been freaking out about this and am more wondering what it would look like after it is healed. Maybe it won’t be as large an area as I think? Maybe I can have reconstructive surgery within a year? If I will have a limp or trouble walking for the rest of my life remains to be seen until I find out how my other muscles compensate. If I am unable to wear high heels ever again, I will be pissed!

The concern at the clinic right now is how my skin will heal and how long it will take because of the radiation. I have an ace orthopedic surgeon working on me, so I’m just going to let him do his thing. I never thought it would come to this.