Friday, March 15, 2013

"If it walks like a duck...

...looks like a duck, quacks like a's probably a duck..." stated my newest Sloan doctor as he was explaining that the tumor behind my knee was most likely LMS.

We headed into the city a little early on Wednesday (March 13th, 2013) so that we could stop to eat before my 12pm appointment with my Orthopedic Surgeon. My PET Scan was scheduled for 6pm that same day and I would not be allowed to eat or drink anything (other then water) six hours before the tests. We figured we would get to the city early and eat a large brunch in case we wouldn't be able to eat for the rest of the day/evening.

We arrived at the hospital a little before 11am and my mom ran in to see if they had any cancellations for PET Scans so that I would be able to get it sooner then later. As luck would have it, they were able to get me in almost immediately (wowzers!). A little Asian nurse took me back (with my mother in tow) to get started. I informed her that I was needle phobic (as I do every single nurse or tech that I come in contact with) and to please make sure she gets everything done on the first try.

Because they inject you with a radioactive glucose thingamajig, they need to test your sugar prior to the scans. She pricked my left pointer finger...and wouldn't you know, not enough blood came out so she had to do my middle finger. do this for a living and you couldn't even push a little freakin pin into the tip of my finger correctly?! I, of course, started freaking out and crying and speaking at probably a much louder volume then I should have, that she better not fuck up my injection since she couldn't even prick my finger correctly.

Wouldn't you know a different nurse came over a few minutes later to do my injection. That poor woman was probably traumatized by my ranting...but I can't help it! Notice the elated look on my face after that wonderful well as the Contrast Drink of Torture next to me. Yum.

An hour later they took me for my scans and 45 minutes later we were heading up to the 4th floor to meet my Doctor of the Month. We were able to get some hospital cafeteria food prior to my appointment and finally, after both a nurse and a Resident talked to us, my doctor came in, clad in a blue plaid bow tie. Ha. I liked him already.

No sooner after shaking my hand he turned to me and told me I immediately had to go back downstairs for more scans. Uhh, what? In an Erin-like fashion I instantly thought the worst. I figured I needed more scans because it was everywhere and this was the start to a bigger nightmare then I was already living and I was doomed.

We raced downstairs where the tech was waiting for me. I guess he could tell the look on my face as I was laying there getting scanned for the second time that day that I was freaking out because he came over to tell me what was happening. Ready for this? They didn't scan my legs.

I would like to just pause for a moment and state that it's really my fault that I get so worked up all the time. I should just accept that these kinds of things ALWAYS happen to me and then perhaps I wouldn't be so frazzled constantly.

The main purpose of my visit to the hospital that day was because of my leg...and yet, my legs weren't scanned. I must be living in Delutinoid World. It just makes no sense.

Of course the tech stated that it wasn't written on my paperwork that I needed my extremities scanned as well so they didn't think they needed to do them. Whatever. I don't care whose fault it was, I just find it extremely humorous and a little ridiculous that no one ever has their shit together. I will say, however, I was pretty relieved that that was the reason for my second set of scans.

A half hour later I was heading back upstairs to finally find out what the fuck was happening. Although I really enjoy this new doctor, I practically need a hearing aid to hear the guy as well as the patience of a saint since he legit pauses for a full minute in between each thought. And if there's one thing I don't have, it's patience.

He finally told us that I would need another surgery. The tumor is attached to my left calf muscle. Joy. He said it's near a nerve but he believes he will be able to salvage it. I expressed my concern about walking and being able to do regular activities and he said that although it may take some time, I will be able to walk on flat surfaces fine but the spring in my step will probably not be as strong. I will still be able to climb stairs and jog and whatever else, but it will probably be more limited and definitely not as strong as my right side. I'll be on crutches for a while and will most likely need physical therapy.

At this point in the appointment I was (of course) upset, but at the same time a little less distressed. At least it wasn't like he needed to amputate or something crazy. I'm obviously still not happy. Why aren't the meds working everywhere? There really is no answer as no one really knows how to treat this type of Cancer. I'm an experiment. A lab rat. It blows.

I asked if the rest of the scans looked ok to which he stated that there was a suspicious mass in my upper right butt cheek. He touched the spot it was around and wouldn't ya know it's directly on my tattoo. Grreeeaaaat. He asked if I had any injections recently because that might cause the activity in the area. I did - I had my last Lupron injection a little over a month ago but I couldn't remember which side they injected me on. I thought it was my left, but I really wasn't sure. We briefly spoke about finding out and going from there.

Overall, I guess it was the best outcome it could have been knowing it could have been a lot worse. We tentatively set my surgery for Friday, March 29th since apparently he is not supposed to have an operating room on Friday's...but he said he would grovel and do his best to get me in. We scheduled pre-op and post-op appointments and left. For just two appointments, we were there approximately 7+ hours, not counting commute time. Unreal.

Today my Oncologist called (of course the one time I wasn't next to my phone) and stated on the message that the tumor is most likely Cancer, my lungs haven't changed (thank God - the ONE positive thing in this whole shabang) and that there was a questionable spot in my "buttocks". They are probably going to remove that as well while I'm under the knife, just like the "questionable" spot that was in my pelvis when I had my second lung surgery.

I cannot help but laugh at this piece of the puzzle. In my butt cheek? Seriously? Not to mention OF COURSE it's in my RIGHT butt cheek and not my left...the opposite side of my leg surgery. Depending on how invasive my ass cheek surgery is going to be, how am I supposed to move? I'll be putting all my weight on the right side gimping around with crutches...but I can't do that if my donk is healing too! This is my life!! Heaven forbid it was on my left side to make it a little easier for me! But noooo. Thanks Life. I appreciate it.

I'm praying (begging) to God that it will only be a simple laparoscopic surgery and it'll heal quick (and have minimal scarring and not ruin my tattoo and not deform my butt cheek...). I mean, how am I going to get around or sit or pee or do anything? I won't be able to lean on my left side for comfort and now I won't be able to lean on my right side either! I was joking to my coworkers that I would have to be pushed around on a wheeled cot so that I could lay on my stomach the whole time. This is unreal. Who else would get a mass in their ass cheek on top of everything else. I have to laugh about it.

Aside from, once again, thinking the worst about this new found other spot, who the heck even covers that area? Will I get a fifth doctor at Sloan? "Hey, I'm the buttocks surgeon who will be doing your surgery." Cool.

So now thoughts of having chunks of my ass cut out are dancing through my head. My boyfriend says I have a flat ass as it is. What if they can't do a small surgery and I wind up lopsided? And even flatter? I wonder if my insurance would cover butt implants. And how absurd would that be. I mean, I guess it would have it's advantages because I could choose a ridiculously good looking ass. But talk about not being able to do anything - I would assume that kind of cosmetic surgery wouldn't be all that pleasant. At least guys can pee standing up. I have a peanut sized bladder and pee probably 25 times a day. I can't imagine sitting on the bowl being comfortable after having work done on your ass. But I digress.

The "good" news is that they were able to schedule the surgery on the 29th so at least it will be over a weekend and my mom can stay with me at the hospital so I'm not sitting there alone, bored and in pain. Now I'll have someone to complain to on a ten minute interval basis (yay!).

Other then being freakin pissed and upset that now I have to worry about yet ANOTHER part of my body being inhabited by this fucking fucked up fuckity fuck-fuck disease, I'm more concerned about being as mobile as I am now. I don't want to walk with a limp and I want to be able to walk for extended periods of time without discomfort and have the option to hike up a mountain or do whatever other vigorous activities I feel like doing. I'm not so much concerned with the cosmetic difference I'll have (although he did say it will look different because he needs to remove a chunk of my calf muscle) because whatever. It is what it is and I can't change that. But I don't want to be limited able-bodied wise. Blah.

Anywho, I guess I'll be filing for Disability next week for the third time in less then two years. If I was a betting woman I would put a shitton of money down that they claim to not receive the third page of my paperwork again (for the third time), delaying my payment. But again, I guess I should just start accepting that this is my life and shit like that will alwaaays happen. As for me, I have two weeks from today to run around and appreciate being fully functional and mobile. Being that I'm not exactly the most graceful of people, the weeks depending on crutches should be fun...

Tuesday, March 12, 2013

Is That All There Is?

I think Peggy Lee said it best when she sang that song. There are times I really wonder to myself, is that all there life, to work, to disease, to love, to everything...?

Approximately three weeks ago I found a lump behind my left knee slightly smaller then the size of a golf ball. If I didn't have Cancer I would've just let it go, thinking it was a cyst. But now every bump, lump, dark spot, erratic hair, flinch of pain, strange noise, weird sound, blah blah blah, I need to worry about. So we called my Oncologist. She ordered an ultrasound for a few days later.

As I was getting probed by a large Russian lady with wiry hair and velcro sneakers, she asked how long I've had the lump for. I told her I wasn't sure but I noticed it about a week prior. Of course I asked her if it looked bad to which she replied in her thick accent, "I'm not doctor, I only take picture."

She did both of my legs so when we walked out of the room, I turned the small screen to me and saw both legs, one with a fairly large looking oval shaped mass. Great.

The following day I got the kind of call no one wants - there was hard mass in the lump so I needed to get an MRI to be sure. I already knew what the outcome was going to be. The lump in my leg feels just like the one I had in my vag years ago. This blows.

The MRI showed the same thing. It's a tumor.

If LMS wasn't so common to show up in limbs I might be a little more on the positive side but being that I learned all about the new advances in prosthetics and replacement joints and bones and whatnot during my last Sarcoma Conference, I'm pretty sure I can say this fucking shit is back and now inhabiting the area right below the crease on the back of my left leg.

What. The. Fuck.

I can't help but sometimes wonder if this is all my life is going to be. A series of doctor visits and surgeries and treatments. I freakin' hope not but the last (almost) two YEARS have proven to be a practically nonstop medical nightmare.

Tomorrow I'm meeting my fourth doctor at Sloan - an Orthopedic Surgeon. I've been joking that I'll have a doctor on every fucking floor of that place soon enough. It's slightly comical. I know I should be thankful I'm at a great hospital but to be quite honest, if I never set foot inside that Building of Doom again, I will be one freakishly happy woman.

Seeing as though a little over a month ago my meds were shrinking my lung tumors, I'm kind of stumped and, well, pissed the fuck off, that out of nowhere this lovely disease has now decided to make an appearance in my fucking leg. And, of course, with all the wonderful thoughts racing around my head, I can't help but drive myself almost over the edge wondering how little, or much, this doctor is going to have to remove.

With my incredibly backwards life, I'm seeing this doctor at 12pm and then getting a PET Scan at 6pm. Joy. A six hour gap. Not to mention the waiting period of the time between the test and the results to find out if it's anywhere else! Yay!

I'm obviously hoping (praying, wishing, begging...) that this will be a simple removal and I'll be back on my feet in no time. However, who the hell knows anymore! I'm getting pretty tired of this bullshit - not gonna lie. If this is all there is then maybe I should just get over it and break out the booze and have a party, as the song suggests. Maybe that's my best bet to staying sane.

As I sit here and listen to delightfully, matter of fact delivery of this wonderful song, I figured I'd share it with you. Let's keep dancing, my friends. Let's keep fucking dancing.

Is That All There Is?

I remember when I was a very little girl, our house caught on fire.
I'll never forget the look on my father's face as he gathered me up
in his arms and raced through the burning building out to the pavement.
I stood there shivering in my pajamas and watched the whole world go up in flames.
And when it was all over I said to myself, "Is that all there is to a fire?"

Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is

And when I was 12 years old, my father took me to the circus, the greatest show on earth.
There were clowns and elephants and dancing bears
And a beautiful lady in pink tights flew high above our heads.
And as I sat there watching the marvelous spectacle
I had the feeling that something was missing.
I don't know what, but when it was over,
I said to myself, "Is that all there is to a circus?"

Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is

Then I fell in love, with the most wonderful boy in the world.
We would take long walks by the river or just sit for hours gazing into each other's eyes.
We were so very much in love.
Then one day, he went away. And I thought I'd die -- but I didn't.
And when I didn't I said to myself, "Is that all there is to love?"

Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing

I know what you must be saying to yourselves.
If that's the way she feels about it why doesn't she just end it all?
Oh, no. Not me. I'm in no hurry for that final disappointment.
For I know just as well as I'm standing here talking to you,
when that final moment comes and I'm breathing my lst breath, I'll be saying to myself,

Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is