Don't show your face again

I’d like to preface this entry with a disclaimer, I’m a bit of a negative-nancy today.

I went for my routine blood tests and scans (bone, chest, ultrasound) last Friday. It should be a few days before I get my results back, until that time I’ll be doing my best to remember to breathe.

When I was still being treated at the hospital, I felt so safe there. When I’d be home puking up my innards, running a high fever, mouth shredded from chemo – and my doctor would tell me that I had to be admitted in-patient, it comforted me. I’d whine about it externally, but honestly it was comforting knowing that I was in route to be in the hands of people the cared and had the knowledge and calm demeanor to settle my rattling nerves. It was exciting to see which nurse would be mine for the night, always hoping for a favorite and catching up with them.

Cancer can make you feel independent and singled out but the hospital gives you a common ground. You’re surrounded with other families dealing with the same worries, and seeing the children was no longer as heart breaking for me as it was initially. And maybe that sounds cruel but I just mean that I looked at them more like allies rather than something so foreign and sad.

Having said all that, going back to that place post-cancer has had the opposite effect on me, which I didn’t expect at all. My sense of smell has heightened ten-fold since chemo. If someone has the slightest tinge of body odor or a warm, greasy scalp – I can smell it from across the room. The second I walk into that hospital I’m engulfed with scents that bring back uncomfortable memories. The bathroom soap, hand sanitizer dispensers, latex gloves, kitchen, paper towels – everything makes my mouth salivate in that about-to-throw-up kind of way.

When you are checked into the hospital, even for just scans, you are given a white band with your name and ID# to place around your wrist. When you walk through the halls with your family or visitors, I noticed that it’s common for other passer-by-ers to drop their eyes down to your wrist level to see who it is that has the unfortunate diagnosis of cancer. I’m guilty, too. I noticed that after people see your band, they will give you a smile and a tilt of a head with eyes that say “I feel sad for you, but I am going to treat you like a normal person and acknowledge you with this sincere smile”. Which is a nice gesture but actually infuriates me sometimes. Like smiling at someone with an obvious disfigurement or handicap. I think maybe this bothers me because society today is not normally as friendly under normal circumstances. Example, many times if I am just walking down the street or holding a door for someone I will smile and I find that it’s not uncommon to not get a “thank you” or a smile back in return.

I sound bitter today huh? This is obviously some kind of inner battle I have going on inside of myself. I thought it would help to put it to words. During my treatment I did my best to react to everything gracefully. In terms of my appearance, attitude, words, etc. In public I think I hid the fact that I was sick very well. I don’t like pity or “aw eyes” directed at me. So by looking “normal” in the hospital and wearing that wristband, it’s like my secret was out. That wristband is my gossip, my story. No matter how much weight I’ve put back on and how full my eyebrows and eyelashes grow in, I still have to wear that wristband each visit and people will know the truth. And not that I am ashamed of the experience or think that it is a top mission secret, but I think I am uncomfortable with the fact that this is something I can never get away from. Something that is out of my hands and not something I chose to participate in. I didn’t sign up for this.

I think what sparked all this hostility was learning about the health condition of a girl that my family became close with. Previous to cancer, she already had a full plate with other health complications. Her body didn’t handle the chemo well and she wasn’t able to go through with surgery to remove her tumor and the cancer has now spread. It makes me sick to my stomach and angry at how unfair all of this really is.

I think that attitude plays a huge part into the wellness of anyone with a beating heart, and it’s no different for someone with cancer. When I was battling cancer I gave it a somewhat non-chalant attitude. I basically covered my ears and made “La La La not listening” sounds. Kind of ignoring the fact that I had this beast growing inside of me with the power to demolish my existence in a short period of time. I filled my days with family and friends and read a lot of books, wrote a lot. Etc. Now that the cancer is out, I find myself finally being able to be angry about the experience. Like the attacker is out of sight and I am not afraid to tell him how I feel.

If you return, I will kick your ass. (again)

Anyway, as you did for me – please keep positive thoughts for this girl and I will surely do the same.

PS,
Smile at a stranger today. If someone smiles at you, smile back. Say please, say thank you.

If there's one thing i've learned it's that one step at a time can make all the difference in this world...

Neil Armstrong said it best.

=)

…4, 3, 2, 1 – DONE!

Yeeesss sir, all of my chemo treatments are complete. I’ve finished up the last one this past week and even though the skin is peeling off of my lips and tongue as I type this, it feels great.

It’s been almost a year since my diagnosis (April 13 – Friday, the 13th…) and some people say to me “wow, can you believe it’s over already? this past year flew!” but for the first time I can say no, no the year did not fly by and yes I can believe that just about 365 days have passed. This year resembled tortoise speed and I couldn’t be happier that treatments are over.

A lot of people ask me what it feels like to get chemotherapy and the best way I’ve ever heard it put to words was by Melissa Etheridge (breast cancer survivor). She said it is like bringing your body as close to death as possible and then bringing it back to life, repeatedly. I feel like I’ve died and resurrected thirty times over, but at the same time – I’ve never felt more alive.

I can’t really say that this experience taught me a huge lesson in life and that now I won’t take everything for granted because I don’t really feel like I was ever a person who took things for granted. I’ve always appreciated the little things in life and the people in it. I am not sure why cancer happens and how certain people are selected to experience it but all I know is that it is unfair and really just another test in life.

I feel bad when people around me feel afraid to complain about a headache or something that they feel is tragic going on in their life. They immediately apologize to me and say that they know it is nothing compared to what I’ve been through. I don’t want my experience to trivialize anything that anyone is going through. Every one has their battles and this was mine. Maybe life’s way of evening things out is just by giving you more headaches than me ;)

Leaving the hospital was a mix of emotions. I wanted to throw the chemotherapy pole through the window and also hug every family and doctor that I’ve met during the past year. As thrilled as I am to be done, I really will miss certain things about going to that place…

Will not miss:
Hearing bad news about patients I’ve become friends with, nausea, the smell of the hospital sheets, daytime television (with the exception of Ellen), the teal blue containers that hospital entrees come in, collecting my pee for testing, seeing new patients’ hair slowly disappear, seeing new patients in general, mothers’ hands shaking, yellow vomit buckets, baby blue latex gloves, finger sticks and children’s band-aids, wheelchairs, cancer, etc. etc.

Will miss:
Seeing the friends we’ve made regularly (Kizzy, Elizabeth), success stories, not having to care about what I look like daily, a slew of favorite doctors and nurses, getting visits from friends and family, the sound of children laughing despite everything, having a lot of time to read books, etc etc.

Wow, I have a lot more “will not miss’s”. I think that’s expected though. Really the thing I will miss the most is all of the friendships I’ve made at that place. Everything that goes on in that place just feels so much more real than anything else. You are seeing families in the raw. Raw emotions, raw skin - raw everything. You have real conversations with people and you know it’s not the routine “oh good morning how are you doing?” when you know the person isn’t all that concerned with your reply. When you are in the hospital and are asked “how are you doing?”, they really want to know. You have everyone’s attention and in a way that feels good, not selfish.

Although I am done with treatments, I am not completely done with that place. I’ll return this Wednesday to remove the metaport from my chest. It is a quick surgery, only 30 minutes – no biggie. Each month I will have to return for blood work, every three months I will go for chest and bone scans. And each time I am sure I will be nervous and ready to throw up at the thought of bad news, but it is something I have to do. There are some people that are too afraid to return for their scans and believe that their treatment is over with on their last day of chemo and they couldn’t be more wrong. I personally knew a woman that was afraid to go for her scans and when the pain was too much to handle she finally went and by that time the cancer had spread and she was gone two months later.

I’ve been given a second chance at life and I intend on keeping it. God forbid the cancer should ever return, I intend on getting a third chance. Please people, if something hurts – go get it checked out by a doctor. I don’t care how minor you think it is. Even though my case was a success I could have a lot more usage in my arm if I had went to the doctor three months earlier when the pain had first started. If you tell me something hurts, I am going to yell at you to go see a doctor. A lot. Thank me later. :P

I will be having a benefit/end of treatment celebration and I’d like everyone I’ve ever met in my life to come. The plans are still in the works but I will be posting the info on here when I have it, and also sending out evites. Please come! Even if you read my blog and I don’t know you, you’re invited too. Details to come…

This blog has been a great friend to me throughout my ordeal. It’s nice to have a place to vent and know that people that care about me are reading and staying updated on my journey. I do intend on keeping this blog and updating it here on out, but how often I am not sure.

30 weeks of chemo and seven surgeries later, I am here closing out my countdown. This bump in the road has certainly left some marks on my body, but I think scars can be a beautiful thing. They’re proof of everything I’ve felt but wasn’t able to put to words, proof of success, and proof that experiences in life really do have a long lasting impression.

Thank you to everyone who supported me endlessly throughout this experience. The love I’ve felt is almost overwhelming, I feel very lucky. I promise that I will be there for you, too.

My last surgery

My surgery has been completed for almost a month now. I was a little hesitant (and exhausted) to update, but I think it’s about that time. I’m going to add a slight disclaimer to this entry, when I update I try to stay light and add some positivity. But this surgery was no picnic and I don’t plan on sugarcoating all that much. It friggen' sucked.

The morning of the surgery we drove into the city very early. My sister woke up bright (dark) and early, and drove to our house to accompany us. When we walked outside to get into the car, every light was on inside of our neighbor’s house and her ADT alarm was going off. I was still sleepy but remember feeling really awkward about it. A few years ago her house got broken into (hence the ADT system now) and ever since I’ve felt really nervous about walking to my back door late at night. It’s silly but when coming home in the dark I actually pop my car key out and place it in between my knuckles in case the thief should return. I just KNOW he’d be terrified of a twenty-something year old girl with beefy guns and a Volkswagen keychain in between her fierce knucks.

Off track huh? The whole point was that I still feel bad about not calling the cops or sticking around until the ADT patrol came or something. Regardless, I had my own battles to worry about that day.

We got to the hospital and I was given my brand new stiff papery gown. Even though it was extremely uncomfortable, I was happy that it was new for once. A few months ago I watched a special on TLC called Crazy Sexy Cancer, and one of the girls that is featured was getting her regular scans done. She approached the huge stack of gowns and said something along the lines of “…a lot of people have used these gowns, I bet they are old.” She pauses, thinking for a moment…and says, ”I wonder how many of those people are dead now.” I can honestly say that I’ve had that exact same thought all too many times. Hence, my excitement over a crisp gown.

Meghan met up with us at the hospital to wait which was really nice. She was such a sleepy lamb that day. If anyone knows Meghan, you know that this is a rarity. (<3 best way possible!). I think I was just about as calm on this day as the day of my big arm surgery. But the thing that had me shaken was the thought of the epidural.

After a really long wait, we went down to the operating floor. The anesthesiologist came in and of course, unsettled me. Not only was I shaken from my last experience but why on Earth is it that every anesthesiologist I’ve met with comes off as the strangest human being on the planet? They all remind me a little of Dwight from The Office (the show). Just characters that make you very uncomfortable, but at the same time you know that they know how to do their job well. Does the job attract a certain breed that get off on sending beings off into a comatic state? They always find a way to look at you oddly right before you drift off, too. They may as well sing you a demonic lullaby and shout “bwahahahha” right before falling asleep.

A team of three people came in to perform my epidural and my family was asked to leave while it was performed. They had a fairly large lady wheel a tiny table in front of me and place a towel on it. Kind of like a pillow. She asked me to lean my head and arms down on it. It kind of alarmed me, I got the gist that she was there to hold me down in case I were to freak out during the procedure. I didn’t really plan on jolting around while they had a needle in my spine, but hey – whatever works! The first step was to inject me with a sedative to calm my nerves and my body. As soon as they injected it all three of them immediately looked into my eyes, I guess waiting for my pupils to dance or something. I felt nothing, and so I avoided their faces by awkwardly looking around the room and at the ceiling. Was about to whistle when one of the Dr’s said “huh, not feeling anything are you?” “nope.” So they gave me a 2nd injection and that did the trick. I really don’t like that I am getting so immune to all of these medications. Anyway I felt woozy and the large woman placed her arms over my head and upper body. I don’t remember a pinch at all but I do remember an extremely uncomfortable aching feeling jittering all around and up my back. Not so much pain but more-so where you want to kick the person causing this feeling and just scream “STOP!” A little like electric volts. I remember groaning and felt the woman’s weight pressing down on my body. It was over before I knew it and they left the room. I was scared to lie down on my back, thinking I’d push the spine catheter in further but I soon realized that my torso was completely numb. What a godsend, pregnant momma’s, have no fear. Epidurals are amazing. (Kim, Jaclyn – you were right, thank you.)

Shortly after it was the same routine that I am kind of familiar with now. Kissing the family goodbye, being pushed in my wheelchair down the hall, passed “surgery room 1” “surgery room 2” etc., all the while the person wheeling me is slapping five with his co-workers and laughing about some inside joke that I’ll never know the meaning of. I got into the stark white room and practically ran to the surgical table. I just wanted to be put out already, I always avoid looking at the screens around the room. Yeah, lots of video camera’s in there. Odd. Maybe I’ll make it onto Discovery Health. That would maybe make a small dent in my med bills. Maybe...

What felt like seconds later I awoke, thankfully without the breathing tube in. No real “episodes” this time, thank god. However waking up in that recovery room was no picnic. Anyone who told me that this would be a piece of cake is living in opposite world. And I did expect that.

Before you can be released from the recovery room you have to be able to rate your pain somewhere between 3 and below. This usually takes an hour and includes a few injections of dilotted or whatever else they want to drug you with. It took about 4 hours to get my pain under control and more doses than I can count. Near the end I could tell that the nurse was getting frustrated and so I said “three” even though I really meant eight. I thought I handled pain well until this surgery.

When something hurts, it is easy to dull it with some pain meds or by simply not moving the part of your body that is in pain. When your lung hurts, tough luck. You can’t not breathe. Shortly after I gave the fibbed “OK” they wheeled me off to my room. Yeah, MY room! The one I always end up in, even after my arm surgery. I’m being serious, this made me really happy. Being a nurse, we thought it best that my sister spent the night with me. My parents stayed down the street and Michelle and I camped out in my bedroom #2. I barely slept that night and can honestly say that I have never felt so much pain in all my life. Each time I took a breath it felt as if an exacto knife was shifting in and out of my lung. My ribs felt tight and almost as if they’d snap if I breathed too deeply. Because of this, I formed a bad habit of taking frequent baby breaths, rather than normal long patterns of breathing. For my entire stay I felt like I was breathing through a straw. Asthma felt infantile in comparison to this. I remember waking up and being too afraid to speak in order to wake my sister up. I needed my nurse and did have the button on my bed, but knew that any talking would take away the breathing that I desperately needed to save. Finally I couldn’t take it anymore and after deciding not to throw things at my sister in order to wake her up, I whispered “shell” as many times as it took for her to hear me. She woke up and called for my nurse. Pain meds really did nothing, the only thing that worked decently was an anti-inflammatory. I can’t remember the name of it but I remember fiending for it. The nurse would arrive and I felt like an addict, so ready for my relief.

The next day they had me up and walking and coughing. It was painful but I knew I had to do it. I did an amazing job at not once looking at the huge drain tube sticking out of my ribs and emptying into the box on the floor. I had my family cover it in pillowcases. I knew that one glance would cause my body to jellify, and I needed to save up all the strength I had for my baby breaths.

A few days later the moment I dreaded came, the time to pull out that drain tube. They sat me up, counted, and pulled it out. To my surprise it actually wasn’t too painful. Again just a very odd feeling. Like pulling a fat snake out of my side, I could feel it gliding past my insides. Once it was out they just placed some bandages over the wound. The team left and I felt something trickling down my side. I was leaking. Yeah, pretty disgusting to see your inner fluids draining down your hip and into a huge wet spot on my bed. It looked like fifteen children had pee’d my bed. We called them back and they placed more bandages on top and finally I stopped wound-peeing.

The following day they removed my epidural catheter, again not painful in the least. However the effects of not having those meds delivered directly into my spine were terrible. The pain was back and fiercer than ever.

The part that really stunk was that the woman that came to instruct my breathing exercises was not very compassionate. She resembled Sara Silverman and as much as I’d try to let that give me some comic relief, it didn’t really do the trick. She asked me to lie on my side and basically slapped the crap out of my back. This is to break up any phlegm and gunk in your lungs. The part that I think she forgot was that I mentioned that she needed to be careful because of my back incision and also because of the fragility of my shoulder from the last surgery. This chick was a gestapo and showed no remorse! She ended up dislocating my shoulder and at that point I was about ready to slap her around as well.

Since this was right before Christmas, we decked my room out in Christmas lights. It looked really cute, and just as I was getting excited about my new décor – I got booted out of my room and sent to the lung floor with the adults. Turns out the floor had filled up and they needed my room for a child. The good thing was that my nurse felt bad about me having to move all my stuff to the new room, and so she told the lung floor that I had some sort of infectious disease or something along those lines, so that I could get a private room. Niiice! The nurses came in with long gowns, masks, and gloves. It was kind of funny but at the same time – even though I knew I didn’t have anything weird, I felt offended! Like I was some foreign experiment that was leaking rabies and emitting radon or something.

My surgeon came into my room and delivered the news of my biopsy results. Hearing the results, I broke into tears and hysterics…

The first nodule was absolutely nothing, a little pocket of benign junk. The second, however, was not Sarcoma (which is really good), but it was a completely different type of cancerous tumor that was growing. I don’t remember the name of it, but when the Dr saw my reaction he immediately belted out that it was nothing to worry about. I forget the name of it but he said that it was in the extremely early stages, that I wouldn’t have even noticed it was there for another 6 years or so. He also said that it was the most benign form of cancerous tumor there is, if that makes any sense. That really if it was up to him, he wouldn’t of even told me that it was cancerous, but that he had to (obviously) because he is my surgeon. He explained that this doesn't require any extra chemo and that the only thing that needed to be done was removal, which was all done. I asked if he’s seen this is any of the other kids he’s operated on and he sad yes. I asked if he’s ever seen it return, and he said no. My oncologist also explained it the same way, and said that this was all GOOD news. That it is nothing to worry about, it’s not Sarcoma – and because of that, my prognosis has just gone UP. This calmed me greatly and I was able to breathe again.

Soo, these are good things. And because it’s not Sarcoma, I will not need that second lung surgery. Thank god.

I have four more treatments left, and then I am done. Countdown starts…

NOW!

Hello there...

I’ve finally received my surgery date, it’s 12/17/07. I have “off” until that date, this is so that my body has time to heal itself up from this weeks round of chemo in prep for the surgery. This date does kind of stink, being that it is so close to Christmas and also because a good friend of mine (who I haven’t seen in forever) is flying in from Okinawa Japan on that exact date. Frustrating, but I know that putting it off or trying to get the date moved is not an option for me – because I realize that timing is everything when dealing with cancer. When dealing with anything, really. If I have to spend Christmas in the hospital, so be it. If I am home, fine. I just can’t wait to get this over with. That is a Christmas present in itself for me.

I met with a (not “thee”) surgeon the other day that performs this lung surgery regularly. I do not particularly like this man. It probably seems like I have formed some sort of hatred for males in the medical industry after reading my last post, but I swear I haven’t! This man performed my metaport surgery back when I first started treatment, and messed up. The port would only work when I would lie down flat, if I got up to do anything it would occlude and become completely non functional. Receiving chemotherapy is difficult enough without having to lay down on your back the entire time in order for it to be delivered. My nurses would get frustrated and would even go to him and ask that he come by my bed to speak with me about what could possibly be wrong and how to fix it. Two months go by and the man would walk by us in the hallways with his head down and ignore us. Two months went by before he actually came by to talk to me. And when he did come by, he came off as very defensive. I asked him why he didn’t test the port out in the OR with me sitting in an upright position. He literally laughed at me and said “well because this never happens.” Well guess what buddy, you made it happen. The part that irked me the most was that snide chuckle. There is nothing funny about anything that goes on inside of that building. Do not laugh at me when you’re the one that can’t perform your job accurately.

Back to the surgery discussion. I told my Oncologist that I refuse to let this man perform the surgery on me due to a history I had with him. He did arrange for a different surgeon (this guys boss – he’s amazing) to do the surgery, but for some reason they still wanted me to meet with chuckle-master. Which I found to be really awkward…

I went into that room chock full of questions for him. I already knew the answers to most of my questions because I had done my research and have also grilled the patients that have had this surgery performed already. But still, it feels better if you vocalize them. The Dr. pulled up the latest c-scan of my chest. What a weird sight! Previous to my diagnosis I loved watching graphic operations on Discovery Health and was fascinated by the inside of a human body. But when I am forced to look at my own insides, not so much. He showed me the spots in my right lung, there are only 2 and they are indeed, very small. As weirded out as I was to be looking at my own ribs, lungs, and heart suspended in an x-ray, it was almost comforting to see how tiny the dots were in comparison to my other organs, and to know that they are being removed.

I also have [potentially] good news. Originally I was told that I will need 2 lung surgeries. Now I’ve found out that if the spots are benign, then I do not need a 2nd surgery. However if it’s not benign, then I would. SO kids, the word of the day is – BENIGN! I am not kidding when I say that I ask you to think of this word often, in conjuction with the words “Kelly” “Lung”, etc. ☺ I am all about positive thoughts and forcing that word into my own galaxy.

The surgery will take about 3 – 4 hours and I am happy to report that they will not be going in through my chest, but through my back via the incision line that I already have from my last surgery. Where they removed my back muscle. What they do is deflate your lung so that it is flat and use their fingers to literally pinch around the tissue to feel for hard spots. They will obviously remove the two that they see in the scan, but often there are more hiding out. If the spots feel hard and boney, it is likely Sarcoma. If they are soft, it is likely not.

Once they’ve removed everything, they either stitch up your lung with dissolvable stitches, or use surgical staples. I asked if the staples dissolve, they don’t. Weird to think that there could be metal living in the area that passes oxygen.

He explained that after the surgery is performed, he will not have answers for us. That the specimens have to be sent off to the lab for testing, and we will not get the results back for a few days. That is the most frustrating part for me, the waiting and wondering. It’s almost worse than the actual surgery.

Due to my horrific “waking up” experience from my last surgery, I asked for him to detail out the waking up and recovering scenario for me. He assured me that I should not wake up with a breathing tube in my esophagus again and that I will not have that line in my jugular vein. Thank God! Instead, when I wake up I should just have an oxygen mask on, and will actually have that on for 2 or 3 days. I was curious as to how the lung inflates back to its normal size after the surgery, so I asked. And he said it’s a combination of them pumping oxygen into me, and myself actually breathing on my own. When I awake they will ask me to take big breaths of air in order to pump that sucker back up to size.

I asked if it will hurt to breathe, like in my actual lungs - and he said not so much. But it will feel more like someone kicked the crap out of me. My back muscles will feel extremely sore. Because of this, they will be giving me an epidural. Yep, just like the screaming mothers that are about to pop out a human receive. I asked if it can be done while I am asleep, unfortunately it cant. There’s something about people poking near my spine that really unsettles me, y’know? Either way I’m sure I’ll appreciate the effects of it.

The most important thing that’s stressed with lung surgery is movement. The day after surgery you must get out of bed and walk around, dragging every bit of medical machinery that is attached to you. They will ask me to cough, spit, gag, hack, and every other unpleasant activity you can think of to remove any excess fluid from my lungs. This is to prevent pneumonia.

When I had my last surgery they had placed 4 drains into my body to remove the swelling fluid, the fluid drained into small bags. This time, there is only one drain. But I’m told that this bad boy is almost the width of a hose, and doesn’t drain into a bag – but into a BOX that sits on the floor. It extends out the side of your body, under your arm. It’s not placed into your lung, but next to it. To be honest this is what I am dreading the most. The sight of it all and also the removal of it. When they remove it, they ask you to scream before they even pull it out. Good times! At this point, for me – a lot of this has become comedic…

You know when you’re having a bad day and things just spiral out of control? You get a flat tire on the way to work when it’s snowing, the jerk of the flat tire causes you to spill your medium-hazelnut-cream-&-three-sugars on your brand new white D&G sweater, your cell phone flies into the back seat and explodes into a million tiny pieces. Causing you to wave down a fellow driver in what looks to be a promising car.

…It’s kind of like that. Where you feel so overloaded with tragic events that you become numb and nothing really surprises you. All I can do is remember to breathe, keep calm and most importantly – stay positive.

Physical therapy and upcoming events

I met with my surgeon about two weeks ago and he had a look at my arm. He is happy with the results, but said that it is still pretty swollen. He said that it could take about 9 to 11 months for the swelling to completely go away. Weird because it doesn’t look all that swollen to me, a tiny bit just above my elbow - the lower part of my upper arm. However in the hospital my arm resembled something of the elephantiasis-nature, and most of that has clearly vanished. Now that it’s gone down I can see the difference in my two shoulders and arms, blatantly. The very top area of my arm is very thin, then fattens out towards the bottom – kind of like a pear. And since the shoulder has slouched a little, you can see the head of the prosthetic at the very top of my shoulder. They explained that over time, it should smooth out as my own muscle begins to develop and grow around the prosthetic. I am not all that concerned because A. I never wear tank tops B. I haven’t worn bathing suits in a good decade or so. And most importantly, C. I have my arm.

Originally I was not supposed to start physical therapy until December, but I can move my hand and lower part of my arm very well. And so this week I started physical therapy on the lower portion of my arm.

My dad and I were sitting in the waiting area, with a group of people with canes, slings, soft casts, etc. It’s kind of funny, each time a new person walked in and sat down, we’d all survey the person simultaneously to see what was wrong with them. I felt like I was sitting in a room with a bunch of innocent children that don’t know any better but to stare at deformities or anything out of the norm, myself included.

An older gray-haired man limped his way over to me. One leg was shorter than the other and so he had a thick platform underneath one of his shoes so that he could even out his stance. He said, “Hello”. I said, “Hi.” and kind of looked away. Then he says, “come with me!” then I realized that he was my physical therapist. I really thought he was a patient too, and found it a little unsettling that my physical therapist walked with a limp…

Again, the child in me comes out.

We sat down in his office and I explained my “situation” to him from beginning to end. I think these people are used to sprains, pulled backs, maybe a broken bone here or there. Because the entire time I spoke to him, I could tell that he was trying to mask his emotions and facial movements. His eyes would widen when I mentioned the words “cancer” and “chemotherapy” and the fact that I have had the majority of my arm removed and replaced. His eyes always snapped back quickly as if he wasn’t phased, but I have a pretty decent knack for reading people.

There was something about this man that really annoyed me on that first day. He kept using really big medical terms, one after another – in sentences. And not in a descriptive or educational way, but more like “so when your surgeon was doing the operation how did he go about removing the androclavicsophicous?” I made that up but you get the point. I must have had to stop him at least seven times and say, “I don’t know what you are asking me”. Also, my dad came with me but was for the most part, silent. Which was totally fine, but when I would speak to this man and ask him questions that I was concerned about, he’d immediately turn to my dad and provide the answer to him. It’s like, hellooo – my mouth moving, fathers is not. Look at me, I am an adult and I am the one paying for your services.

I will stop ripping this guy apart now. Anyway, we did some basic physical therapy on my first day. He was extremely gentle and almost seemed afraid to touch me. Rightfully so. I offered to bring him in a letter that my surgeon wrote to my insurance company, describing the surgery in detail so that he could get a better understanding. He seemed really relieved about that and so it made me feel better too.

He took some initial measurements of how far up and down I can bend my arm, how strong my grip is, etc. He seemed impressed with what I could do already, and kept saying “Wow!”…I was beginning to like this man again. This was all so that we can track my progress after each session and see the improvements.

The second day was a little rough. Since my arm has been in a sling since June and cocked in an angled position, the muscle has since atrophied and hardened and it is impossible for me to stretch my arm out straight right now. It is not that big of a deal because gravity will fix the issue over time once the sling is off, but the problem is that it is extremely painful. So what he does is supports my arm but very slowly lowers it centimeter by centimeter. Very tiny increments. But there came a point where my arm wasn’t having it anymore and just literally refused to stretch out any further. That is when the pain set in and it feels as though I have about 200 thick rubber bands in my arm that just refuse to budge.

I asked him if heat or simple massage therapy before treatments could help, and he said it can help – but he is hesitant to use it on me because those types of things cause your cells to speed up and divide quicker. RED LIGHT, not something someone with cancer would ever want to participate in, for obvious reasons.

As I talked more with him I came to like him a lot better and trust him very much, I’ll return tomorrow for my 3rd session.

And now, I have to spill the beans on some upcoming events that I’ve been holding off on bringing up. Turns out that I am in store for two separate lung surgeries. A lot of times, Sarcoma can spread to the lungs. From the very start of all of this, they noticed 2 or 3 small pea-sized dots in my lungs in reviewing the c-scans.

It could be nothing, or it could be something.

They explained that normal people can get this, that they could be pockets of pneumonia or phlegm. Or, it could be from the Sarcoma. The good news is that they haven’t gotten any larger, and don’t see any more than originally spotted. But at the same time, they haven’t gotten any smaller. Which sounds bad, but almost calms me because the chemo demolished the lemon-sized tumor in my arm. If it was “something”, wouldn’t the chemo have demolished those as well? I am not sure, but it’s my small spec of hope.

The surgeon said, “there is going to come a day when your chemo treatment has ended, and we send you off into the world. And we are not comfortable letting you go without removing those specs and seeing what they are.”

And I fully agree, whatever it is – get it the hell out of me. They see the dots in my right lung only, but also want to check out the left lung just to be sure nothing is hiding out. A friend of mine that I’ve made at Sloan just had this surgery last Friday. She is fine now but the recovery process sounded brutal. I am very scared, due to my fear of not being able to breathe and the thought of something slicing through my lungs.

Still, I am holding strong and will not let this change my spirits. Whatever it is, just get it out of my body.

Extremely long [and detailed] post

I haven’t found much time (energy really) to write, but it’s 7 am and I cannot sleep. First, thank you all for your loving words and prayers before and during the surgery. I mean this to close ones, and even strangers that have contacted me out of the blue who’ve stumbled upon my blog. I grant a lot of the success of the surgery from your well wishes and positive energy. …And of course, western medicine played a big part too ;).

My BFF did a fabulous job at updating everyone in the last post (thanks girl!) but I feel like I should probably write something about the surgery too. This may be a long post…

Well, the day finally came and I was more than ready. However walking the streets of NYC at 4 am and hearing only the scuff of your shoes is very eerie. For the most part, my parents and I were silent. I do remember a cockroach skittering in front of my feet and screaming. Okay, so there were 4 of us awake at that time. Sorry little guy, but you’re crispy and gross.

We got to the hospital and everything got started pretty quickly. The longest lull was waiting for the girl who works the am shift in pediatrics to arrive to get me started with my gown. Even that was only about 20 minutes or so. The silence in that place was odd too. Apposed to the usual movement and noise in there from all of the children and parents. There was one other family waiting too. We didn’t speak to each other, but throughout the building there’s an unspoken compassion in everyone’s eyes. It says, “I know. But everything will be alright for you too.” And you hope to God that he has enough miracles for us all.

The [extremely tan and fashionably high heeled] girl arrived and I got changed. My surgeon came by shortly after, reassuringly chipper and bright – not usual for the normally stern-faced man that I know. He quickly recapped the events for the day, and for some strange reason my only concern at the time was that the catheter be placed after I was asleep. Ridiculous, yes. He assured me that this was the process, and his parting words were, “I’m confident about this surgery. You’re my only patient today and that is for a reason. If it takes longer than 12 hours, that is OK. I’ll be there. My goal is for this to be the last surgery you ever have in your life. All you have to do is sleep, I’m the one that has to work!” His words soothed me and I was ready to get started.

I was wheeled down to Anesthesia and placed in a very tiny bed. A bunch of people entered and had me verbally “OK” a bunch of papers I had previously signed (AKA scribbled with my left hand). The anesthesiologist came in and explained how I would be “put out”. For the most part, I got her gist but I remember being distracted by her man-hands and abnormally hairy arms. Especially since her voice and facial features – soft blond hair, blue eyes - were so dainty. She left, and it was the three of us again. At this point, my mom had broken down into tears. And rightfully so, as much as this sucks for me too, I can’t imagine what it must feel like to be a parent of someone going through this. When you have no control or say over what happens to your child. It’s OK ma, it would have almost been weird if you hadn’t done that. I was abnormally calm on this day. Probably because I knew that this was the day that Satan was being removed from my body. It was something to celebrate!

The time came and I was wheeled to the surgery room. I kissed my parents goodbye and got out of the wheelchair. For some reason, they always make you walk into the surgery room and to the surgery table, which I find discomforting. It’s like, “here, walk yourself to your doom!” If it were up to me I’d had my surgeon carry me to the table in his arms like an infant. That’s really what you feel like, a feeble child taking small steps into a big room of strangers. Anything you’ve heard about operating rooms, its true. They are all too large and white. Lights are everywhere. And although the voices are always friendly and comforting, the fact that their mouths are covered with masks makes it odd. It’s like they are overwhelmingly covered in their battle gear, and I am the enemy. They are ready to lie me down on this table and start bloodshed.

I walked to the table and laid down. They started the anesthesia “slowly to take the edge off” but before I knew it, the large UFO of lights above me were dimming, and I was out.

10 and a-half hours later, I awoke with what felt like a plunger down my throat and into my esophagus. I couldn’t open my eyes yet, and realized that I was not breathing. I immediately started convulsing around the bed, and pulling at the breathing tube (which they stress NOT to do if this should happen) out of sheer fright. I felt hands holding me down and heard a voice say, “its ok dear, calm down and just breathe through your nose, you’re alright – we just need to take a quick x-ray then we’ll take the breathing tube out.” I tried my best to calm myself into a state of Zen and just focus on my breathing. But that is hard when you have a deviated septum with only one nostril to breathe out of, especially after all of that movement. I am also an asthmatic, so even shallow breathing terrifies me. I refuse to swim in the ocean simply because of the fact that I am afraid of drowning. (Ok and partly because I don’t know what critters and pollutants are crawling around in those murky Atlantic waters)

Finally they yanked it out and I took the biggest breaths of air I ever had in my life. And then, I cried. Straight up broke into hysterics. Over everything. Over the breathing tube but mostly over the fact that I have to go through all of this. For the most part I am tough but there are moments that overwhelm you and you realize that it is OK to feel sorry for yourself and weep yourself into oblivion.

During my episode is when they decided to bring my family in to see me – bad timing. My vision was dim but I recognized my sister, dad, and aunt. I couldn’t speak and mostly whimpered in tears. I am glad that my mom didn’t decide to come in at that point. The staff realized that it was all too much and asked my family to leave me alone to rest. I am sorry that my family had to see me like that.

I woke up on the orthopedic floor, sharing a room with someone – that wasn’t supposed to happen. I was supposed to be placed in the intensive care area of the pediatric unit, in my own room. Turns out that the rooms had “filled up”. The thing that stinks about being an adult with a pediatric cancer is that when they want to pull the age card, they will. I guess it makes sense but hey, I am going through a lot too and you tend to find comfort in routine and familiar surroundings.

Well, I must be honest, I didn’t just “wake up”. I was awoken at 5 am by a team of 5 people yanking me in an upright position, and violently tearing the bandages off of my body. Anyone who has had a taste of chemo knows how sensitive your skin gets. A quick poke of a finger or simple removal of a band-aid can feel excruciating. They also pulled two very long drains out of my arm. My mother had to leave the room in tears because she couldn’t stand to watch me scream in pain. I really think this was the most traumatizing experience during my 3 week stay. When the team left my mother screamed at them, calling them animals. We did report this to the higher beings and they did get scolded. Their defense is that it was going to be painful anyway so they figured the speed of light is the best option. I’m sorry but no, have a little compassion and at least wake me first and explain what you are about to do.

The event left me with painful blisters and wounds all over my body. My nurses were shocked and I had to be treated by the wound care team that normally treats burn victims.

As you can tell I am still really bitter about this. Moving along…

I forgot to mention that I also awoke with a tube poking through my jugular vein in my neck. I had no idea what it was and why it was there and neither did my parents. We inquired and found that the anesthesiologist had placed it in case of an emergency. If god forbid something happened and a main artery needed to be accessed quickly, that this is the best route. It makes sense but we were annoyed that the woman didn’t explain this to me much before the surgery. She just mentioned that if they needed to, they would be accessing another vein. She made it sound uncommon and certainly didn’t mention my JUGULAR. Anyway, a few days later a woman came to remove the tube. I was pretty nervous, and she had me count to three. Oh my lord, this was the longest thing I have ever seen. Here I am thinking it’s this tiny tube. No sir, it looked about a foot long and the wound began to spray blood (like in the horror movies) so she pressed a gauze pad on the hole for quite a bit of time. Yes, this beast was definitely in my jugular and extended down into a main valve of my heart.

The sight of the catheter bag and the two drains left in my back grossed me out, so I avoided looking at all costs. The long trail of stitches down my arm and back, however, didn’t bother me all that much. It looked more like victory to me. A very wise young man that has always inspired me just said to me, “better to have scars on the outside than the inside”. I think that’s perfect.

After a few days I was finally moved to the pediatric floor, and I felt very at home. Unfortunately it wasn’t a private room, but it was a room that I am all too familiar with. Whenever I have to be treated in-patient, I somehow always end up in this room. I shared the room with a young girl that had to be awoken each morning for radiation treatment. When she returned, it was like clockwork that she would vomit repeatedly for hours. I felt awful for her. The poor girl has been unable to eat for weeks so each time she would try to, um…”evacuate”, only bile would come up.

She spoke with alarming intelligence for such a young girl, and had eerie piercing blue eyes. I noticed that not once did she turn her hospital TV on. I came to realize that her father is a very wealthy neurosurgeon and she was only allowed to watch educational programming on a portable DVD player. Even at her sickest moments, they had teachers coming in to go over her school subjects. Kudos to this child for being so amazing but I must say I was pretty annoyed at her parents for putting extra stress on her. I wanted to play cartoons on her TV and feed her Twizzlers. Come on people, chillax a little!

Each morning I was awoken at 4 am, then 5 am, then 6am, then even sometimes again at 7 by the orthopedic, plastic surgeon, oncology, and resident teams. They would poke and prod at my body, ask me a few questions, then leave. Every day.

The orthopedic team noticed that my new shoulder kept slipping out of its new socket. They explained that this is happening because they had to remove the majority of muscle in my arm. This includes the muscle that holds your shoulder up. The hope is that as I heal, the scar tissue will hold things in place. This also means that each morning I had to have my shoulder popped back in place by my surgeon. It sounds awful but actually wasn’t too painful, I found that the pain would come a few hours later. Now that I’ve been home, it’s slipped again. Sometimes it just never stays in place and will heal slouched, I have a feeling that I will fall into that category. That is OK, I am lucky to even have my arm at this point.

The day came when I had to have my catheter and last two drains in my back removed. The catheter was nothing but the drains, holy hell. The most disgusting feeling ever. I didn’t realize how long they were until they started slithering out of my body – they started just below the back of my neck and ended at my lower back. But yeah, the best way I can describe it is as a slither-fest. Blagh!

About halfway through my stay, I started having “episodes”. My ears would fall silent, eyes would blur, and I began sweating and was unable to breathe. A team of doctors stormed in, frightening poor Meghan who was just outside my door – waiting to come in to visit. They placed an oxygen mask on me and took my blood pressure, which we found had sky-rocketed, along with my heart rate. During the attack, a priest peeked his head in from around the curtain. It was such perfect timing, but at the same time I thought, is this the end? Is that why he’s here right now, to send me off? With all of the craziness and hands on my body, I focused my blurry vision on that man for some strength. It is not exactly a miracle that he appeared, it wasn’t out of the blue because when you are treated at Sloan, they ask for your religion. I put down Catholic because technically, that’s what I am. I am not a practicing Catholoic and the most experience I’ve had is being baptized. Because I filled out that form, they have the priest come to your room every other day or so to see how you are doing, and to ask if you’d like a blessing or communion. I’m rambling here, the point is that I feel like there is a reason that he chose to visit me at that moment, very eerie. It gave me some faith and makes me want to learn more about the religion.

After things got back to normal, my oncologist came by with a very concerned look on his face. I’ve never seen him look at me like this so it frightened me a lot. He ordered for a chest scan and doppler ultrasound ASAP. His fear was that I had formed blood clots from the surgery, and that 1 or more had detached and gone to my lungs. Just what I need…

Sure enough, I have a blood clot in my jugular from that damn tube that was placed, and not even used. The good thing is that it is not completely obstructing the flow of blood and it seems to be latched on pretty firmly.

I failed to mention that my hand and arm had swollen up to a freakish size. My hand resembled the Hamburger Helper hand. Because of this, they think another clot may be in my arm from surgery. Unfortunately we don’t know because my arm was too sensitive to get an ultrasound reading. When they do these, they press very hard. Regardless, the treatment for that clot (if it’s there) is covered by the blood thinner med I am on. This entails two needle injections a day. I dread this time of the day. The poke of the needle isn’t bad, but it’s the actual medication that is injected that hurts like a mother@%&! It’s a burning sensation, and I am left with little spots left to inject, from all of the bruising from these pokes. I will have to do this for three months.

I think that wraps up the events of my surgery. I apologize if I have grossed anyone out, and I just realized that this entry is massive, so I will end it kind of abrubtly. Also because i have typed this entire entry with one hand so my fingers are killing me and patiece have worn out!

Well kids, I am getting there. The first half of chemo and major surgery is now complete. A few more months of chemo and I am done! I miss you all terribly.

[EDIT]
After publishing this post, i realized that i left out the most important news. And it's good news! They tested the tumor after it was removed and found that it was about 98% cancer free - practically dead. Also, the margins of the removal (edges of the speciman) were 100% cancer free. My surgeon and I couldn't be happier. The chemo has been effective and all the pain and suffering is well worth it when you hear news like that. The last words from my surgeons mouth before i left the hospital were, "you've come a long way, and you're right where i want you to be."

:)

Surgery It’s OUT!!!

Hi everyone. I’m the friend with the updates. I’ll try to do my best.
I’d first like to say that the surgery went extremely well. We got one update at the midway point to say that the cancer had been fully removed and all was going as planned. Dr. A said it was a good thing they waited the extra couple months for the bone to heal after the break because if he had not the bone would have shattered while he tried to take it out. Scary. The surgeon also said the tumor was seeping out of the pores in the bone, so it appeared to look more like cauliflower. Well, now it’s out!!

More good news!! It looks great. We were worried about the extent of deformities (although that’s a minor matter), but it reeally looks great. It’s swollen and once the swelling goes down it may be smaller than her other arm, but her shoulders are perfectly symmetrical! The plastic surgeon did a pretty sweet job. I think they counted 68 stitches just in the front.

The important thing is that the surgery was a success! Yay!!!
Now… after surgery… The one thing Kelly was worried about was the breathing tube, moreso than the actual surgery, believe it or not. There was a 50% chance she would wake up with the breathing tube in, but the Rosie O’Donnell nurse said she probably wouldn’t even remember because it would only be for a moment. As soon as the anesthesiologist woke her up, they would take it out. Well she wakes up from this massive surgery, breathing tube in place and is actioning best she can to the nurses for them to take it out. These nasty nurses are like oh, your fine, just breathe, we’re going to take an X-ray and then take it out. 15 minutes go by, the poor girl is gagging on a breathing tube that’s not even on, breathing out of one nostril because the other one’s stuffed and she has asthma. Then they give her an 11 inch needle in her neck when they could have used her metaport. Then the nurse pricks herself with the needle and they have to give her an HIV test. It was kind of a nightmare to wake up to. Since there were no beds available in pediatrics, she was stuck on this unfriendly floor. Her mother wasn’t allowed to stay with her. : (

It took almost a day to control the pain. Morphine wasn’t working. Not to mention it’s incredibly itchy. Finally they put her on Fentinyl, which I believe is a hair away from heroine. Kel can’t stand being dependant on drugs. She has control of her dose by pressing a button and she’ll hold out on pressing it until she has to. Ah! About that… when she was on morphine and pressed the button it would give out 3 pushes and you can hear it. When they switched her over to the Fentinyl they forgot to tell her that now it’s not 3, it’s more like 20. Plus it’s stronger, so when she pressed the button, she obviously thought the machine was broken and wouldn’t stop. She was sure her heart was going to explode. Terrifying.

One more complication. Her arm had started to swell, as well as her leg. Dr. Meyer came in to look at it and was concerned. Seeing the concern in his face…I could not imagine...knowing what an infection could mean. They did some tests and their instinct was right. They found a blood clot in her jugular. They immediately put her on Heprin blood thinner. But then Dr. A was worried because it hadn’t been 5 days after surgery and blood thinner could prevent the transplant from healing, so they took her off the Heprin. Of course it was nerve racking knowing that now nothing was being done about the clot. After the 5th day, the clot specialist put her back on blood thinner - two shots a day. Yikes!!!! There still may or may not be clots in her arm. They can’t press hard enough on her arm to get an accurate ultrasound reading.

Most recently, the surgeon felt that the arm was slouching a bit. The arm had slipped out of the socket. He has to lift her arm to snap it back in. OUCH :( but it's getting a lil better every day.

Man, my first two paragraphs were so pleasant… what happened?

It’s hard to put into words how brave and positive Kelly’s been. The first day she was moving her hand in a direction the surgeon said would take a week of physical therapy to accomplish. Even though it hurts, she’ll get up to walk around. I think a nurse trainee said it best. I was outside her room and this girl was so moved by Kelly’s attitude. She said “Kelly is just the best person.” I said, I know. And she said “No, I mean the best person in the whole world.” We never know how we’re going to react in a crisis, but she’s an absolute phenomena. It can be so ridiculously frustrating, but she finds a way to smile. And in a few months we’ll be able to say, yeah, she killed that bitch with a smile. : )