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.
Thursday, November 29, 2007
Thursday, November 15, 2007
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.
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.
Wednesday, October 24, 2007
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."
:)
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."
:)
Sunday, October 7, 2007
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. : )
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. : )
Sunday, September 16, 2007
The countdown begins...
2 days until my surgery, wow.
The past three weeks have been chemo-free in order to build myself up for the surgery. I’ve been feeling great so I took advantage of my free time by eating a lot and seeing friends and family. I was weighed on Friday, I gained 9 pounds! Funny to hear a female getting excited about putting on weight. It is so nice to be able to eat without throwing up, I must say. Also, I will never understand bulimic people.
Had a bunch of testing done this week in prep for my surgery. Blood work, physical, EKG, xray, MRI. All came back good. We met with my surgeon on Friday to review my MRI and Xray, and to talk in detail about my surgery. Lots of good news and some news that did upset me.
Fortunately my Xray looked great and my bone has healed perfectly straight – finally! It’s amazing how slow your body heals while you’re on chemo. I broke my arm in the end of June, it just now has healed. He also reviewed my MRI and mentioned how great that is looking as well. When I first met with him and we reviewed my first set of MRI’s, my tumor was the size of a lemon. Literally. “Now,” he says…”it’s practically disappeared.” This relieves me beyond words. By the tone of his voice he almost sounded amazed, like normally people do not respond this well to the chemo, especially for a tumor of such size.
The details of the surgery are pretty gory. So I won’t get too descript but basically they are removing the majority of the muscle in my upper arm, shoulder, and even some from my shoulder blade. They have to remove more muscle now than they originally had told me because of the break in my arm. When I broke my arm some of the blood from near the tumor seeped into the surrounding muscle. To ensure that they remove all of the cancer cells that leaked, they have to make an extremely wide incision. Because of this, I will have much less usage of my arm than originally thought. But I will still be able to write with my right hand, eat, touch my eyes, ears, etc. It will be hard for me to touch the top of my head without leaning down a little though. All of the bone in my arm and shoulder will be removed as well. The long bone in my upper arm will be replaced by a cadaver bone, and my shoulder and shoulder socket will be replaced by some form of metal/steel. They’ll also be using a metal plate to connect the cadaver bone to my own lower arm bone.
To my co-workers: when I return to work and we travel, you may not want to stand by me when we walk through the metal detectors.
We meet with the plastic surgeon the day before surgery to talk about what he’ll be doing. He’s the one that will be removing a large muscle from my back, in order to sculpt my arm back into shape. The one part that did upset me that I did not hear about before, is that my arm will be pretty disfigured. I could care less about the size and appearance of the scar, you can easily cover that up. But my shoulder will not extend as far out as it normally should, only about halfway out –if that makes sense. It will be very close to my body. And it will also appear slouched.
Two days before I found out about this my dad and I were in the parking garage and I noticed a kid and his mother, waiting for their car as well. I recognized him from the hospital and although I wasn’t staring obnoxiously, I did notice something “off” about his appearance. Then I realized that his shoulder looked exactly like what I described, and I said to myself “oh crap, I bet he had the surgery that I am going to have.” Surely enough, two days later I found out that I was right.
I know this is minimal compared to the other worries that I have right now, but you try to catch a break where you can. Especially because this wasn’t mentioned to me until less than a week before my surgery. You need some time to process and accept these types of things. If any of you ladies have any old business suits from the 80’s, feel free to donate your thick shoulder pads to me! ;]
The surgeon discussed the chances of the cancer returning. Normally it is a 7% chance that the cancer could return. But because I broke my arm, mine are a little higher. However he said that he is still positive about the situation as a whole because of how well the chemo has performed, and also because of my age. God forbid the cancer returns, and returns in my arm – there is no choice but amputation.
I don’t really have anything witty or light to say right now. I am still brave and positive about everything, but the 12 hour surgery that will be happening on Wednesday has me pretty shaken, I can’t lie.
Please think positive thoughts for me! I will be out of commission for a very long time after my surgery. So I will be giving a friend of mine my UN & PW to this page so that she can update it and let you know how everything went.
Goodbye tumor! Here we go….
The past three weeks have been chemo-free in order to build myself up for the surgery. I’ve been feeling great so I took advantage of my free time by eating a lot and seeing friends and family. I was weighed on Friday, I gained 9 pounds! Funny to hear a female getting excited about putting on weight. It is so nice to be able to eat without throwing up, I must say. Also, I will never understand bulimic people.
Had a bunch of testing done this week in prep for my surgery. Blood work, physical, EKG, xray, MRI. All came back good. We met with my surgeon on Friday to review my MRI and Xray, and to talk in detail about my surgery. Lots of good news and some news that did upset me.
Fortunately my Xray looked great and my bone has healed perfectly straight – finally! It’s amazing how slow your body heals while you’re on chemo. I broke my arm in the end of June, it just now has healed. He also reviewed my MRI and mentioned how great that is looking as well. When I first met with him and we reviewed my first set of MRI’s, my tumor was the size of a lemon. Literally. “Now,” he says…”it’s practically disappeared.” This relieves me beyond words. By the tone of his voice he almost sounded amazed, like normally people do not respond this well to the chemo, especially for a tumor of such size.
The details of the surgery are pretty gory. So I won’t get too descript but basically they are removing the majority of the muscle in my upper arm, shoulder, and even some from my shoulder blade. They have to remove more muscle now than they originally had told me because of the break in my arm. When I broke my arm some of the blood from near the tumor seeped into the surrounding muscle. To ensure that they remove all of the cancer cells that leaked, they have to make an extremely wide incision. Because of this, I will have much less usage of my arm than originally thought. But I will still be able to write with my right hand, eat, touch my eyes, ears, etc. It will be hard for me to touch the top of my head without leaning down a little though. All of the bone in my arm and shoulder will be removed as well. The long bone in my upper arm will be replaced by a cadaver bone, and my shoulder and shoulder socket will be replaced by some form of metal/steel. They’ll also be using a metal plate to connect the cadaver bone to my own lower arm bone.
To my co-workers: when I return to work and we travel, you may not want to stand by me when we walk through the metal detectors.
We meet with the plastic surgeon the day before surgery to talk about what he’ll be doing. He’s the one that will be removing a large muscle from my back, in order to sculpt my arm back into shape. The one part that did upset me that I did not hear about before, is that my arm will be pretty disfigured. I could care less about the size and appearance of the scar, you can easily cover that up. But my shoulder will not extend as far out as it normally should, only about halfway out –if that makes sense. It will be very close to my body. And it will also appear slouched.
Two days before I found out about this my dad and I were in the parking garage and I noticed a kid and his mother, waiting for their car as well. I recognized him from the hospital and although I wasn’t staring obnoxiously, I did notice something “off” about his appearance. Then I realized that his shoulder looked exactly like what I described, and I said to myself “oh crap, I bet he had the surgery that I am going to have.” Surely enough, two days later I found out that I was right.
I know this is minimal compared to the other worries that I have right now, but you try to catch a break where you can. Especially because this wasn’t mentioned to me until less than a week before my surgery. You need some time to process and accept these types of things. If any of you ladies have any old business suits from the 80’s, feel free to donate your thick shoulder pads to me! ;]
The surgeon discussed the chances of the cancer returning. Normally it is a 7% chance that the cancer could return. But because I broke my arm, mine are a little higher. However he said that he is still positive about the situation as a whole because of how well the chemo has performed, and also because of my age. God forbid the cancer returns, and returns in my arm – there is no choice but amputation.
I don’t really have anything witty or light to say right now. I am still brave and positive about everything, but the 12 hour surgery that will be happening on Wednesday has me pretty shaken, I can’t lie.
Please think positive thoughts for me! I will be out of commission for a very long time after my surgery. So I will be giving a friend of mine my UN & PW to this page so that she can update it and let you know how everything went.
Goodbye tumor! Here we go….
Friday, September 7, 2007
Hi!!
Update coming soon! I've gotten lots of worried emails from my friends & family. I'm okay :] I just haven't posted anything new because of no other reason than I just haven't. I appreciate the love and concern. <3 Sneak preview:
I finally got my surgery date. Wednesday 9/19. Yay!...but at the same time...ahhhh!
I finally got my surgery date. Wednesday 9/19. Yay!...but at the same time...ahhhh!
Tuesday, August 7, 2007
Bounce
More and more I am asked how I am dealing with a life threatening disease so well. Oncologists and Aetna insurance courtesy calls seem concerned that I am not interested in talking to “someone”; aka a therapist. I wouldn’t say that I am exactly boasting with excitement these days, but I’ll just say that I won’t let myself get devoured by this foreign DNA living (and dying) in my body.
Last December I had a meltdown which, now, seems so trivial. In any case, at the time it felt tragic and so I went out for a comfort drive with a very special friend and she taught me a new way of thinking/being. It did help tremendously during that time and since my diagnosis I think of that night often. I wrote the following entry about 9 months ago. I thought this may help answer some of your questions as to how I am managing to cope with things. This is one of the ways...
---------
12.5.06
Tonight we spoke about the basics of quantum physics and other things of nature that seem simply out of your control, but they really aren’t. They don’t have to be unless you make them that way. The idea that what you put out there is what you get in return. Release negative energy into the universe, surround yourself with negative feelings and thoughts – it will throw it all right back at you. It’s always listening and ready to bounce, and in the end all you have is yourself. Your thoughts. Be careful because that body of yours. it’s listening. And then it reacts.
Think about how your body feels when you are stressed or upset. When you are going through something tragic or simply something that is out of your control. Can you feel the knot in your stomach and that lump in your throat? At the same time, your hands are sweating and your teeth are clenching. Why is it happening? And why all at once? A mini panic attack, if you will. It happens because you let it. Negative energy is flowing from head to toe and your body is physically reacting. It listens and your body puts a face to it.
It’s ugly and it stings. People see you and you feel thin and transparent.
Is it true? Can we really control all that? I typically laugh at new age bullshit and organics but if I boil some of the ideas down that I learned tonight, it makes sense. I get it.
Mind and body. The universe around us. Balance and gravity. Good in, good out.
I heard that there are no such things as coincidences in life, that you are in charge of it all. No one matters but your self, and for that – you make your own decisions. You predict that phone call and you called upon that stranger.
The people you meet and the places you go, you make it happen. Gain that control back.
There are points in your life where you have reached the end of your rope and it is then when you finally learn to appreciate the passion and beliefs of others. Where you finally open up because you feel like you have no other choice. It is sad, but opportunity.
It is refreshing to have a friend that is so spiritual, but not the least bit religious. It comes out in smiles and long drives.
Thank you, Shannon. ♥
Last December I had a meltdown which, now, seems so trivial. In any case, at the time it felt tragic and so I went out for a comfort drive with a very special friend and she taught me a new way of thinking/being. It did help tremendously during that time and since my diagnosis I think of that night often. I wrote the following entry about 9 months ago. I thought this may help answer some of your questions as to how I am managing to cope with things. This is one of the ways...
---------
12.5.06
Tonight we spoke about the basics of quantum physics and other things of nature that seem simply out of your control, but they really aren’t. They don’t have to be unless you make them that way. The idea that what you put out there is what you get in return. Release negative energy into the universe, surround yourself with negative feelings and thoughts – it will throw it all right back at you. It’s always listening and ready to bounce, and in the end all you have is yourself. Your thoughts. Be careful because that body of yours. it’s listening. And then it reacts.
Think about how your body feels when you are stressed or upset. When you are going through something tragic or simply something that is out of your control. Can you feel the knot in your stomach and that lump in your throat? At the same time, your hands are sweating and your teeth are clenching. Why is it happening? And why all at once? A mini panic attack, if you will. It happens because you let it. Negative energy is flowing from head to toe and your body is physically reacting. It listens and your body puts a face to it.
It’s ugly and it stings. People see you and you feel thin and transparent.
Is it true? Can we really control all that? I typically laugh at new age bullshit and organics but if I boil some of the ideas down that I learned tonight, it makes sense. I get it.
Mind and body. The universe around us. Balance and gravity. Good in, good out.
I heard that there are no such things as coincidences in life, that you are in charge of it all. No one matters but your self, and for that – you make your own decisions. You predict that phone call and you called upon that stranger.
The people you meet and the places you go, you make it happen. Gain that control back.
There are points in your life where you have reached the end of your rope and it is then when you finally learn to appreciate the passion and beliefs of others. Where you finally open up because you feel like you have no other choice. It is sad, but opportunity.
It is refreshing to have a friend that is so spiritual, but not the least bit religious. It comes out in smiles and long drives.
Thank you, Shannon. ♥
Tuesday, July 31, 2007
Home for...2 weeks?
One week ago today I had my 10th round of chemo – Cisplatin/Doxorubicin. Cisplatin is the rough guy that enjoys knocking me on my ass. It’s hard to avoid feeling ill during and after the drug. If there’s one thing they encourage, it’s LOTS of liquids to flush the drugs out of your system. Sounds easy but it’s not when everything you place into your mouth (including water) makes you want to throw up. Knowing this, we asked if we could take my IV bag buddy “Fred” home for 2 extra days of hydration. You can bring him home as long as there is someone that is willing to pull the needles out after you’re done. My mom shrieks and flails her arms in the air at the thought of it, but luckily my sister has just finished nursing school! How convenient. So we brought Fred home and Michelle came by to yank the needle (thanks Shell). I think the extra hydration helped a little, but I can’t lie – I still feel like garbage. I feel like there are a ton of books on my chest, when i walk it's hard to breathe. I've had this in the past, it's a side effect of the chemo.
This morning I had to go to my local primary care doctor to see how my blood counts are doing. The results came back very low, as expected. However the thing to look out for is a fever, so far I’ve managed to get a fever each time after having Cisplatin; which means you have to be admitted to the hospital and hooked up to antibiotics and fluids. So far so good, fingers crossed.
A few weeks ago they removed my makeshift “cast” and replaced it with some other contraption. That’s really the best way to describe it: a contraption. It’s this (hard) plastic white arm gear that snaps together over your upper arm, then there’s this sweet velcro piece that comes over my shoulder, up across my chest, and sticks together on the other side of my neck. It almost resembles protective football gear. Versace watch out.
I kid. I know it’s not meant to be fashionable. At first it was really uncomfortable but now I’ve gotten used to it. I no longer wear the sling so I am forced to use my arm a bit more, which is a good thing. If you don’t use your muscles for a long time your body simply forgets how to use them. It’s really scary – it happened to me. After the new gear was placed my surgeon told me to try and move my lower arm up and down a few times a day to keep the muscle active. I went home and tried. No dice. It just wouldn’t move, pure dead weight. It wasn’t even that it hurt it just did not want to move. But days have passed and I can now move it again little by little…phew.
Well originally my surgery should have been completed by now. It was scheduled for July 25th but the break has since shifted everything around.
Saw my surgeon again before leaving on Friday to discuss my arms progress. Dr. Athanasian is such a character. He is quiet but has so much presence. When he walks into the room you automatically feel the need to fix your posture and shake his hand. Our visit was pretty short this time, he looked at a new xray of my arm and reiterated how wonderfully the tumor is reacting to the chemo. He looked at the break as well, but is not as happy with the progress of that. It’s healing, but very slowly. I knew this, because when I would get up from sitting I could hear and feel the bones shift. The thought of it makes me nauseous – what else is new. So he decided to give my bones some more time to heal, and to do some more chemo in the meantime. Sounds like a plan to me. The key is to not break anything else during the surgery. The more bone that breaks, the greater chance there is of cancerous cells spreading – we do not want that. He also mentioned that in one of my next visits I will be meeting with the plastic surgeon as well. I’ll explain the surgery in detail in another posting, but here I will just say that it is intense and the room will be filled with loads of surgeons. The estimated time of my surgery is 10 – 12 hours. I’m still in shock about that one. Depending on my progress, my surgery will either be the last week of August, or the first week of September.
Ah, we did have another encounter with the infamous Dipsy Doodle. This time she had wandered over to the out-patient side. She wheeled her blood pressure machine over to us, big dopey eyes all lit up with an open smile, “HEY!! What are you guys doing here!?”…hmm well…
Anyway, overall I’m doing well. A little bored and a little house trapped – but otherwise ok! Once I’m feeling better some of you guys should come watch movies with me.
This morning I had to go to my local primary care doctor to see how my blood counts are doing. The results came back very low, as expected. However the thing to look out for is a fever, so far I’ve managed to get a fever each time after having Cisplatin; which means you have to be admitted to the hospital and hooked up to antibiotics and fluids. So far so good, fingers crossed.
A few weeks ago they removed my makeshift “cast” and replaced it with some other contraption. That’s really the best way to describe it: a contraption. It’s this (hard) plastic white arm gear that snaps together over your upper arm, then there’s this sweet velcro piece that comes over my shoulder, up across my chest, and sticks together on the other side of my neck. It almost resembles protective football gear. Versace watch out.
I kid. I know it’s not meant to be fashionable. At first it was really uncomfortable but now I’ve gotten used to it. I no longer wear the sling so I am forced to use my arm a bit more, which is a good thing. If you don’t use your muscles for a long time your body simply forgets how to use them. It’s really scary – it happened to me. After the new gear was placed my surgeon told me to try and move my lower arm up and down a few times a day to keep the muscle active. I went home and tried. No dice. It just wouldn’t move, pure dead weight. It wasn’t even that it hurt it just did not want to move. But days have passed and I can now move it again little by little…phew.
Well originally my surgery should have been completed by now. It was scheduled for July 25th but the break has since shifted everything around.
Saw my surgeon again before leaving on Friday to discuss my arms progress. Dr. Athanasian is such a character. He is quiet but has so much presence. When he walks into the room you automatically feel the need to fix your posture and shake his hand. Our visit was pretty short this time, he looked at a new xray of my arm and reiterated how wonderfully the tumor is reacting to the chemo. He looked at the break as well, but is not as happy with the progress of that. It’s healing, but very slowly. I knew this, because when I would get up from sitting I could hear and feel the bones shift. The thought of it makes me nauseous – what else is new. So he decided to give my bones some more time to heal, and to do some more chemo in the meantime. Sounds like a plan to me. The key is to not break anything else during the surgery. The more bone that breaks, the greater chance there is of cancerous cells spreading – we do not want that. He also mentioned that in one of my next visits I will be meeting with the plastic surgeon as well. I’ll explain the surgery in detail in another posting, but here I will just say that it is intense and the room will be filled with loads of surgeons. The estimated time of my surgery is 10 – 12 hours. I’m still in shock about that one. Depending on my progress, my surgery will either be the last week of August, or the first week of September.
Ah, we did have another encounter with the infamous Dipsy Doodle. This time she had wandered over to the out-patient side. She wheeled her blood pressure machine over to us, big dopey eyes all lit up with an open smile, “HEY!! What are you guys doing here!?”…hmm well…
Anyway, overall I’m doing well. A little bored and a little house trapped – but otherwise ok! Once I’m feeling better some of you guys should come watch movies with me.
Saturday, July 7, 2007
Hiatus
I feel like I am constantly being tested, like there is some bigger force laughing at me and throwing hardballs at my face.
Two weekends ago Josh and I took a trip to Albany so that he could sign his lease. He’ll be going to Albany Law starting in August and so I wanted to see his place and the town that he’ll be living in. It was a gorgeous day and drive. We pull up to the house, park, I get out of the car, turn around, and close the car door with my right arm…
…SNAP! I feel the bones in my arm glide past each other and settle themselves into an awful place. The sensation I felt is one I can’t even explain, I didn’t see stars but I froze for a while and knew right away what had happened and began screaming to Josh. By the time the paramedics came I was sobbing and shaking. And not so much because of the pain but because of what my surgeon told me in my consultation; “Whatever you do, do NOT break this arm or it will make it very difficult to save through surgery. “ His words just kept on spinning and spinning around in my head as they pumped me up with morphine and a stranger was rubbing my back.
They took me to the hospital and then they had me transported to Sloan. Being that far away from home in a hospital that doesn’t really know Oncology or my case had me pretty frustrated with everyone that handled me. “Oh its just a broken arm don’t worry we’ll cast you right up.” No, you don’t understand…
My surgeon came by my hospital bed the next morning to talk to me. He told me news that made me sick to my stomach. He explained that I broke my arm right across the tumor, which means that cancer cells are free to roam about my body and that I now have a greater chance of the cancer returning after my full surgery and treatment. He also told me that he will still try and save my arm but now there is a greater chance that it may not be successful and that amputation could become more of a possibility.
I lost it.
My Oncologist heard that I was having a hard time with the news and came by to comfort me. He told me to calm down because the case described by my surgeon is more likely for someone that hasn’t gone through chemo yet. I’d had 7 rounds of chemo at the time this happened. Some people even discover that they have Osteosarcoma by doing simple things like reaching up to put dishes away which results in a break. The bone on/near the tumor just becomes so brittle.
I will lighten this up a little…
I had a full round of tests done in prep for my surgery. This is routine to see how your tumor is reacting to chemo, and also to see if the cancer has spread. They do x-rays, a chest scan, and a full bone scan. The bone scan is the most telling for my condition since I have bone cancer. The wait for the results of these scans are pure hell.
Yesterday I met up with my surgeon again. He has a special office where he meets with patients. There are only a few chairs, awkward lighting, and a computer on his desk with a stack of dusty magazines that I would bet haven’t been read in years. The wait was all too quiet and I felt like my heart was going to jump out of my chest.
He came in, “Hey stranger!” and shook my hand. He sat down with his assistant and said “I have good news”, and smiled. My heart fell back into my chest. He said my bone scan was clean and that he is so happy with the progress of my arm. The tumor has shrunk even more and this will make the surgery so much easier to perform. He mentioned that even though I have a break, he is very positive and is confident that he should be able to work around the break. The only somewhat negative is that I am pretty much on house arrest until and after the surgery. I can deal with that. Also I have a nodule in my lungs that we are still uncertain of. They saw this early on too, but even “normal” people get nodules on their lungs that are absolutely nothing. He said he is not too concerned with that right now, but that we will look at it closer after my arm surgery.
Mom, dad and I left his office with color in our cheeks.
Lots of crazy things went on in the hospital for the 11 days that we were there, but the most memorable is from a woman we’ve named Dipsy-doodle. They have people that come in every few hours to check your vitals while you’re in-patient. They wake you up in the middle of the night with no shame to poke your ear with a thermometer, put that odd clipper on your finger to measure your oxygen level, and take your blood pressure. They had to take my blood pressure on my leg rather than my arm because both are out of commission. The right being broken and the left with huge bruises, swollen & sore, and a scary Amazon-rainforest-looking rash from my veins being infiltrated by the IV’s being left in too long. The crease of my arm is so bruised and punctured – I resemble a heroin addict.
Back to Dipsy-doodle…
DD: [Places the blood pressure thing around my leg] “WOW!!! You have the smoothest legs! They are so soft. What razor do you use??
Me: [stares at her quietly]: I don’t shave.
DD: [Eyes widen] Oh where do you get them waxed?
Me: I don’t.
DD: [“thinks” some more] Oh, laser hair removal?
Me: [Pause. Deep breath.] CHEMOTHERAPY.
DD: [Smacks her head] OHHH hehe.
Pardon my French but what a fucking dolt. You work at a cancer hospital, are you serious?
I couldn't help but share this with my nurses. I didn't know her name but they knew exactly who I was talking about right away and were cracking up. There are more incidents with her but this was the best.
Anyway, keep throwing hardballs at my face. I’ve got a big ‘ol mitt.
Two weekends ago Josh and I took a trip to Albany so that he could sign his lease. He’ll be going to Albany Law starting in August and so I wanted to see his place and the town that he’ll be living in. It was a gorgeous day and drive. We pull up to the house, park, I get out of the car, turn around, and close the car door with my right arm…
…SNAP! I feel the bones in my arm glide past each other and settle themselves into an awful place. The sensation I felt is one I can’t even explain, I didn’t see stars but I froze for a while and knew right away what had happened and began screaming to Josh. By the time the paramedics came I was sobbing and shaking. And not so much because of the pain but because of what my surgeon told me in my consultation; “Whatever you do, do NOT break this arm or it will make it very difficult to save through surgery. “ His words just kept on spinning and spinning around in my head as they pumped me up with morphine and a stranger was rubbing my back.
They took me to the hospital and then they had me transported to Sloan. Being that far away from home in a hospital that doesn’t really know Oncology or my case had me pretty frustrated with everyone that handled me. “Oh its just a broken arm don’t worry we’ll cast you right up.” No, you don’t understand…
My surgeon came by my hospital bed the next morning to talk to me. He told me news that made me sick to my stomach. He explained that I broke my arm right across the tumor, which means that cancer cells are free to roam about my body and that I now have a greater chance of the cancer returning after my full surgery and treatment. He also told me that he will still try and save my arm but now there is a greater chance that it may not be successful and that amputation could become more of a possibility.
I lost it.
My Oncologist heard that I was having a hard time with the news and came by to comfort me. He told me to calm down because the case described by my surgeon is more likely for someone that hasn’t gone through chemo yet. I’d had 7 rounds of chemo at the time this happened. Some people even discover that they have Osteosarcoma by doing simple things like reaching up to put dishes away which results in a break. The bone on/near the tumor just becomes so brittle.
I will lighten this up a little…
I had a full round of tests done in prep for my surgery. This is routine to see how your tumor is reacting to chemo, and also to see if the cancer has spread. They do x-rays, a chest scan, and a full bone scan. The bone scan is the most telling for my condition since I have bone cancer. The wait for the results of these scans are pure hell.
Yesterday I met up with my surgeon again. He has a special office where he meets with patients. There are only a few chairs, awkward lighting, and a computer on his desk with a stack of dusty magazines that I would bet haven’t been read in years. The wait was all too quiet and I felt like my heart was going to jump out of my chest.
He came in, “Hey stranger!” and shook my hand. He sat down with his assistant and said “I have good news”, and smiled. My heart fell back into my chest. He said my bone scan was clean and that he is so happy with the progress of my arm. The tumor has shrunk even more and this will make the surgery so much easier to perform. He mentioned that even though I have a break, he is very positive and is confident that he should be able to work around the break. The only somewhat negative is that I am pretty much on house arrest until and after the surgery. I can deal with that. Also I have a nodule in my lungs that we are still uncertain of. They saw this early on too, but even “normal” people get nodules on their lungs that are absolutely nothing. He said he is not too concerned with that right now, but that we will look at it closer after my arm surgery.
Mom, dad and I left his office with color in our cheeks.
Lots of crazy things went on in the hospital for the 11 days that we were there, but the most memorable is from a woman we’ve named Dipsy-doodle. They have people that come in every few hours to check your vitals while you’re in-patient. They wake you up in the middle of the night with no shame to poke your ear with a thermometer, put that odd clipper on your finger to measure your oxygen level, and take your blood pressure. They had to take my blood pressure on my leg rather than my arm because both are out of commission. The right being broken and the left with huge bruises, swollen & sore, and a scary Amazon-rainforest-looking rash from my veins being infiltrated by the IV’s being left in too long. The crease of my arm is so bruised and punctured – I resemble a heroin addict.
Back to Dipsy-doodle…
DD: [Places the blood pressure thing around my leg] “WOW!!! You have the smoothest legs! They are so soft. What razor do you use??
Me: [stares at her quietly]: I don’t shave.
DD: [Eyes widen] Oh where do you get them waxed?
Me: I don’t.
DD: [“thinks” some more] Oh, laser hair removal?
Me: [Pause. Deep breath.] CHEMOTHERAPY.
DD: [Smacks her head] OHHH hehe.
Pardon my French but what a fucking dolt. You work at a cancer hospital, are you serious?
I couldn't help but share this with my nurses. I didn't know her name but they knew exactly who I was talking about right away and were cracking up. There are more incidents with her but this was the best.
Anyway, keep throwing hardballs at my face. I’ve got a big ‘ol mitt.
Saturday, June 9, 2007
Round 4
Round 4…a week late. Unfortunately I had to push this week back because I had some lip/dental issues I had to take care of before the Cisplatin came in and made a royal mess of my mouth. Methotrexate treated me good the first time, but my 2nd round of it – not so good. The drug can settle in pockets of your body, for me it was my bottom lip. Swollen/huge/peeling/bright red (I’m talking 4 year old with a cherry ice pop in mid-July). My bottom lip has always been fuller than my top so you can imagine how frightening I was looking. Not only that, but it hurt! It is still not completely healed but I had no choice but to get some dental work done before going in for chemo this week.
Funny story…my friend Gina and I felt like having our summer toes pampered so we went and got pedicures. Here I am, all self conscious about my monkey-mouth but I thought hell, I feel like having cute toes. I am not trying to impress anyone. So we finish up, are sitting at the nail dryers and I notice this woman staring at me. Blatant stare-a-thon. I figured she must have noticed my headscarf or maybe my metaport and wanted to speak to me about cancer or something. Finally she interrupts us…”excuse me miss, I just have to tell you that you have got the most gorgeous mouth I have ever seen. And that smile! I am an art teacher and let me just tell you, you have a perfect T-line, all of your features are lined up perfectly and THAT MOUTH! It’s gorgeous! You are very blessed.” I guess I didn’t know how to react or was just in so much shock because in the car ride after Gina explained that I laughed in the woman’s face like a crazy person. I remember saying “HAHAHwwhhhat!!?? They are swollen and chapped and gross!!” And she just kept saying to me “don’t tell me that, no one needs to know that – I just wanted you to know how gorgeous I thought your lips were, I’d love to draw you.” I stopped laughing at the woman and took her ironic compliment. What I really felt like saying to her was “would you mind following me around for the next 7 months and please compliment me like that whenever I am feeling miserable and self-conscious?” Thank god for people like that. She made my day. Another lesson in not worrying about what people are thinking.
Back to the chompers…last Saturday was rough, but I got through it. Two cavities filled and two teeth pulled. Normally my dentist would have tried to save those two teeth but with the harshness of the chemo and the infection that were in them, it would have been a lost cause. I would have never healed. Luckily they are not my two front teeth or anything ☺. The pain wasn’t so bad in the teeth or gums but more so in the yanking/pulling of my poor cherry-ice-in-July lips. Ouch. I must say I have some luck with the people that take care of me. My dentist left it up to me as to when I wanted to make my appointment, pushed all his time aside and spent 3 hours on me. By the 4th tooth we both needed a break, I do need to get one more tooth pulled at some point. The office also wrote me a very nice letter and took 30% off of the cost of the work that was done. Here comes another plug - go see Dr. Midlige in Mountain Lakes, awesome guy.
Made it into NY for a dreaded round of Cisplatin/Doxorubicin on Tuesday and came home last evening. They drug you up good when you are on Cisplatin because it makes you 24/7 nauseous. I spent most of the week asleep and/or out of it. This time around I am going to be smarter about this drug. I need to force myself to drink at least 3 liters a day to flush this poisoneous life-saver out of my body. The first time I just slept and completely dehydrated myself to the point of a bad fever and was slapped inpatient for 5 grueling days. I definitely don’t want to go through that again.
Yesterday I had another x-ray of my upper arm and met with the surgeon for a 2nd time.Good GREAT news, the chemo is working ☺ (my smile is much bigger than this emoticon can show). You can see the difference in my shoulder and the surgeon can see it in the x-ray. I can feel it, too. I no longer have shooting pains down my arm, and my fingers no longer go numb. I feel very fortunate because there is a good amount of people/tumors that do not respond well (if at all) to chemotherapy. Thank God. If I weren’t responding to it, they would need to move up my surgery ASAP. I’m glad this is not the case, because my surgeon explained the situation very bluntly “I can save your arm, but the chemo will save your life”. And I am all about life.
Every year Sloan has a “Pediatric Prom” which is the cutest idea ever. Department stores like Bloomingdale’s donate tiny prom dresses that all of the kids can try on for the event, then they get to keep it when it’s over. It is a huge deal for the kids, they even broadcasted it on the news. Unfortunately I couldn’t snoop around the prom with my camera because I was asleep most of the day, but I woke up and saw familiar faces on the TV. My mom went down with my camera and caught a few shots:
That recaps my week. I can’t thank you all enough for your cards, emails, gifts, etc. etc. I am SO overdue with my thank you cards and return emails, so I apologize about that. But I will get to them. Love you's.
Funny story…my friend Gina and I felt like having our summer toes pampered so we went and got pedicures. Here I am, all self conscious about my monkey-mouth but I thought hell, I feel like having cute toes. I am not trying to impress anyone. So we finish up, are sitting at the nail dryers and I notice this woman staring at me. Blatant stare-a-thon. I figured she must have noticed my headscarf or maybe my metaport and wanted to speak to me about cancer or something. Finally she interrupts us…”excuse me miss, I just have to tell you that you have got the most gorgeous mouth I have ever seen. And that smile! I am an art teacher and let me just tell you, you have a perfect T-line, all of your features are lined up perfectly and THAT MOUTH! It’s gorgeous! You are very blessed.” I guess I didn’t know how to react or was just in so much shock because in the car ride after Gina explained that I laughed in the woman’s face like a crazy person. I remember saying “HAHAHwwhhhat!!?? They are swollen and chapped and gross!!” And she just kept saying to me “don’t tell me that, no one needs to know that – I just wanted you to know how gorgeous I thought your lips were, I’d love to draw you.” I stopped laughing at the woman and took her ironic compliment. What I really felt like saying to her was “would you mind following me around for the next 7 months and please compliment me like that whenever I am feeling miserable and self-conscious?” Thank god for people like that. She made my day. Another lesson in not worrying about what people are thinking.
Back to the chompers…last Saturday was rough, but I got through it. Two cavities filled and two teeth pulled. Normally my dentist would have tried to save those two teeth but with the harshness of the chemo and the infection that were in them, it would have been a lost cause. I would have never healed. Luckily they are not my two front teeth or anything ☺. The pain wasn’t so bad in the teeth or gums but more so in the yanking/pulling of my poor cherry-ice-in-July lips. Ouch. I must say I have some luck with the people that take care of me. My dentist left it up to me as to when I wanted to make my appointment, pushed all his time aside and spent 3 hours on me. By the 4th tooth we both needed a break, I do need to get one more tooth pulled at some point. The office also wrote me a very nice letter and took 30% off of the cost of the work that was done. Here comes another plug - go see Dr. Midlige in Mountain Lakes, awesome guy.
Made it into NY for a dreaded round of Cisplatin/Doxorubicin on Tuesday and came home last evening. They drug you up good when you are on Cisplatin because it makes you 24/7 nauseous. I spent most of the week asleep and/or out of it. This time around I am going to be smarter about this drug. I need to force myself to drink at least 3 liters a day to flush this poisoneous life-saver out of my body. The first time I just slept and completely dehydrated myself to the point of a bad fever and was slapped inpatient for 5 grueling days. I definitely don’t want to go through that again.
Yesterday I had another x-ray of my upper arm and met with the surgeon for a 2nd time.
Every year Sloan has a “Pediatric Prom” which is the cutest idea ever. Department stores like Bloomingdale’s donate tiny prom dresses that all of the kids can try on for the event, then they get to keep it when it’s over. It is a huge deal for the kids, they even broadcasted it on the news. Unfortunately I couldn’t snoop around the prom with my camera because I was asleep most of the day, but I woke up and saw familiar faces on the TV. My mom went down with my camera and caught a few shots:
Balloons balloons, party party
My nurse, Michelle. (my absolute favorite woman there)
Dr. Meyers (One of my oncologists. How great is that little yellow crooked polka-dot bow tie!?)
My nurse, Michelle. (my absolute favorite woman there)
Dr. Meyers (One of my oncologists. How great is that little yellow crooked polka-dot bow tie!?)
That recaps my week. I can’t thank you all enough for your cards, emails, gifts, etc. etc. I am SO overdue with my thank you cards and return emails, so I apologize about that. But I will get to them. Love you's.
Wednesday, May 23, 2007
Round 3
Week two of Methotrexate is almost over. I'm happy to report that i have kicked it in the butt again. You have to monitor yourself very carefully when you're on this drug, measuring your "input" and "output", making sure you take enough sodium bicarb pills to even out your PH levels, taking your "rescue pill" to create a barrier between the drug and your healthy cells so that your body does not shut down. I have learned a LOT here already, the body and medical industry amaze me.
Luckily, i have completely flushed the drug out of my body a day early, which is great. This means that i do not have to drag "Fred" home. Here in pediatrics they call the overnight pump/IV bag "Fred" for the children. He's placed in a stylish Sloan-Kettering blue canvas backpack. Fred and i have become very close. When he runs during the night, the sound of the pump makes it sound like he's breathing. Me and Fred are buds.
Any males reading may want to skip over this part. Chemo puts you into early menopause. I am still really upset about this, this means that i only have a 50/50 chance of having children after my treatment. I have always wanted to adopt at least one kid anyway, but i'd like to be able to have one of my own too. It's not entirely out of the question, but for a woman it's devastating to even think that there is a chance that i will be unable to. Even though the Dr.'s mentioned that i can stop taking my birth control pill, i have continued to take it, and even refilled my RX today. I am somehow trying to trick my my body into ignoring the fact that there is chemo in my body. Well maybe it's somewhat working? I had horrid PMS all week and got my "friend" yesterday. On top of that, the early menopause has started. Try PMS-ing and having hot flashes at the same time - holy hell! I feel bad for my parents and anyone else who's been around me for the past few days, lol. Mooooooody much?
Since i am doing well, i am going to get out of bum-wear tonight, put some jeans on and go out to eat with my parents. It'll be nice to not be laying in bed all day and night. Speaking of which...
I had my metaport surgery on Friday. They removed the temporary lines (where they take blood and inject chemo) and placed in a double metaport. This way you don't have wires hanging all over the place, and when they access it - they just push a needle through the top layer of your skin. They have cream that numbs it first so it's not so bad. The size of the device is about two-quarters wide and the height of a thimble. I woke up from surgery in a lot of pain. It feels as if they've implanted a brick under my skin. They place it under the skin beneath your collarbone, where there is not a lot of fat. It's feeling better today but i am pretty bruised up. The worst part is that there is a small percentage of people who have "faulty" wiring with these ports. Can you guess who falls into that percentage? Yours truly. The only way that my port works is if i am laying flat on my back. This means that when i sit up to eat or run to the bathroom, my pump beeps and the meds stop being delivered. I am trying not to let it get to me, but it's hard. Just another bump in the road, i will keep on truckin'.
Oh yeah, my head is officially buzzed. I was surprised that i was able to look into the mirror the entire time, and not cry at all. I think it's because i realize that this is the beginning of my path to recovery, and so to watch it go is not so bad. I will have plenty of time to have fun hair again after my treatment is over. My hair lady is so amazing. She came in on Sunday when the shop is closed, and opened it up just for me so that i did not have to have a ton of people around when she buzzed my head. On top of that, she took the time out of her busy schedule (running around in prep for her daughters graduation) to do this for me. Took my wig, chopped it up and dyed it and has not charged me a penny since all of this started. Oh i love my Maria. Since i am no longer a walking advertisement for her hair creativity and expertise (i am not shitting you that i would get stopped every 5 seconds) i just want to post here that if anyone is looking for a new colorist/stylist - go see Maria in Millburn, the name of the salon is Touche. It's right in the center of town, across from the park.
Even though i miss my hair, I must say it is nice to not have to shave every day! Vanity is fun but it is nice to have a break. I did put a tiny bit of make-up on this morning so as not to look like a corpse, and everyone at the hospital said "wow, you look great today! You must be feeling well" Heh, funny what a little foundation and eyebrow pencil can do.
Anyhoo, i can't wait to come home tomorrow! :]
Luckily, i have completely flushed the drug out of my body a day early, which is great. This means that i do not have to drag "Fred" home. Here in pediatrics they call the overnight pump/IV bag "Fred" for the children. He's placed in a stylish Sloan-Kettering blue canvas backpack. Fred and i have become very close. When he runs during the night, the sound of the pump makes it sound like he's breathing. Me and Fred are buds.
Any males reading may want to skip over this part. Chemo puts you into early menopause. I am still really upset about this, this means that i only have a 50/50 chance of having children after my treatment. I have always wanted to adopt at least one kid anyway, but i'd like to be able to have one of my own too. It's not entirely out of the question, but for a woman it's devastating to even think that there is a chance that i will be unable to. Even though the Dr.'s mentioned that i can stop taking my birth control pill, i have continued to take it, and even refilled my RX today. I am somehow trying to trick my my body into ignoring the fact that there is chemo in my body. Well maybe it's somewhat working? I had horrid PMS all week and got my "friend" yesterday. On top of that, the early menopause has started. Try PMS-ing and having hot flashes at the same time - holy hell! I feel bad for my parents and anyone else who's been around me for the past few days, lol. Mooooooody much?
Since i am doing well, i am going to get out of bum-wear tonight, put some jeans on and go out to eat with my parents. It'll be nice to not be laying in bed all day and night. Speaking of which...
I had my metaport surgery on Friday. They removed the temporary lines (where they take blood and inject chemo) and placed in a double metaport. This way you don't have wires hanging all over the place, and when they access it - they just push a needle through the top layer of your skin. They have cream that numbs it first so it's not so bad. The size of the device is about two-quarters wide and the height of a thimble. I woke up from surgery in a lot of pain. It feels as if they've implanted a brick under my skin. They place it under the skin beneath your collarbone, where there is not a lot of fat. It's feeling better today but i am pretty bruised up. The worst part is that there is a small percentage of people who have "faulty" wiring with these ports. Can you guess who falls into that percentage? Yours truly. The only way that my port works is if i am laying flat on my back. This means that when i sit up to eat or run to the bathroom, my pump beeps and the meds stop being delivered. I am trying not to let it get to me, but it's hard. Just another bump in the road, i will keep on truckin'.
Oh yeah, my head is officially buzzed. I was surprised that i was able to look into the mirror the entire time, and not cry at all. I think it's because i realize that this is the beginning of my path to recovery, and so to watch it go is not so bad. I will have plenty of time to have fun hair again after my treatment is over. My hair lady is so amazing. She came in on Sunday when the shop is closed, and opened it up just for me so that i did not have to have a ton of people around when she buzzed my head. On top of that, she took the time out of her busy schedule (running around in prep for her daughters graduation) to do this for me. Took my wig, chopped it up and dyed it and has not charged me a penny since all of this started. Oh i love my Maria. Since i am no longer a walking advertisement for her hair creativity and expertise (i am not shitting you that i would get stopped every 5 seconds) i just want to post here that if anyone is looking for a new colorist/stylist - go see Maria in Millburn, the name of the salon is Touche. It's right in the center of town, across from the park.
Even though i miss my hair, I must say it is nice to not have to shave every day! Vanity is fun but it is nice to have a break. I did put a tiny bit of make-up on this morning so as not to look like a corpse, and everyone at the hospital said "wow, you look great today! You must be feeling well" Heh, funny what a little foundation and eyebrow pencil can do.
Anyhoo, i can't wait to come home tomorrow! :]
Wednesday, May 16, 2007
Round 2
Back to NY. Monday I had my first dose of High-Dose Methotrexate (made a correction to my first post - i swapped the drug names, whoops) and i am so happy to report that i'm doing awesome. This drug is a bit weaker than the first two, so my blood counts are up and i'm feeling good and eating like a pig. I lost about 10 lbs. after my first treatment so this week i am taking advantage of my non-nausea and am trying to bring my weight back up.
I do love this hospital but the one thing i am having trouble tolerating are the vast majority of smells. The smell of coffee, alcohol swabs, and the absolute worst - saline. Before they draw blood from your lines or inject you with chemo, they always have to flush your lines with saline to clean them out. As soon as they inject it, you get a rush of the scent and taste in your nose, mouth and even eyes. It is the strangest sensation ever. I read a few stories of cancer patients that said the exact same thing. I always used to love the smell of "clean", sterile hospital-type things. But now, yyyuck. I guess i am associating these smells with the feeling of pain and the overall reason that i am here.
More and more hair is falling out, and so this weekend i think i am getting rid of it all. I wake up and find it in my nose, eyes, socks, pants etc. and it is just itchy and depressing (you guys know i am a hair fanatic). So it will be hats and scarves from now on. Also, the chemo effects your tastebuds. Anyone who knows me well enough knows my love for chocolate. Guess what guys? The thought of it makes me sick to my stomach! I can't believe it myself. All i find myself craving (candy-wise) are really gross sugary children's candy. Like gushers fruit snacks and lifesavers and all of the candy i've always despised because it tastes like pure sugar. How very strange...
I am getting more and more comfortable here in NY and at the hospital. IV machines beeping and children screaming start to swirl together and just form a backdrop of the daily visits. On my first day of chemo i was all set up in my room, IV started dripping, and all of a sudden we hear a child screaming bloody murder. My nurse comes in and says "don't worry, we are not murdering children over there! It is just the chemo". Turns out there is a type of chemotherapy that the nurses can inject directly into tumors with a needle and it is very painful for the children since it attacks the tumor immediately. They keep these rooms far off but the shreaking bounces all over and down the hallways. I can't put the sound to words but trust me, it is something you'd never want to hear. I walk down the hallways and study each patient, fingers crossed that i will see their hair start to grow back some day soon and that those tears will subside.
Just wanted to give a quick update to let you know that i'm doing well, it's nap time for me. I miss you all!
I do love this hospital but the one thing i am having trouble tolerating are the vast majority of smells. The smell of coffee, alcohol swabs, and the absolute worst - saline. Before they draw blood from your lines or inject you with chemo, they always have to flush your lines with saline to clean them out. As soon as they inject it, you get a rush of the scent and taste in your nose, mouth and even eyes. It is the strangest sensation ever. I read a few stories of cancer patients that said the exact same thing. I always used to love the smell of "clean", sterile hospital-type things. But now, yyyuck. I guess i am associating these smells with the feeling of pain and the overall reason that i am here.
More and more hair is falling out, and so this weekend i think i am getting rid of it all. I wake up and find it in my nose, eyes, socks, pants etc. and it is just itchy and depressing (you guys know i am a hair fanatic). So it will be hats and scarves from now on. Also, the chemo effects your tastebuds. Anyone who knows me well enough knows my love for chocolate. Guess what guys? The thought of it makes me sick to my stomach! I can't believe it myself. All i find myself craving (candy-wise) are really gross sugary children's candy. Like gushers fruit snacks and lifesavers and all of the candy i've always despised because it tastes like pure sugar. How very strange...
I am getting more and more comfortable here in NY and at the hospital. IV machines beeping and children screaming start to swirl together and just form a backdrop of the daily visits. On my first day of chemo i was all set up in my room, IV started dripping, and all of a sudden we hear a child screaming bloody murder. My nurse comes in and says "don't worry, we are not murdering children over there! It is just the chemo". Turns out there is a type of chemotherapy that the nurses can inject directly into tumors with a needle and it is very painful for the children since it attacks the tumor immediately. They keep these rooms far off but the shreaking bounces all over and down the hallways. I can't put the sound to words but trust me, it is something you'd never want to hear. I walk down the hallways and study each patient, fingers crossed that i will see their hair start to grow back some day soon and that those tears will subside.
Just wanted to give a quick update to let you know that i'm doing well, it's nap time for me. I miss you all!
Thursday, May 10, 2007
It starts here
I feel most creative and full of words when i'm going through hard times. Because of this, i've decided to create a blog to document one of the biggest experiences i will ever have in my life. I want to use this to share my experience with others, and also to keep friends and family updated on my quest.
On 4/13/07, i was diagnosed with cancer - Osteosarcoma (or osteogenic sarcoma) of the right shoulder/arm. Sarcoma is a very rare form of cancer, it is actually a pediatric cancer in which children battle. It occurrs in the connective tissues and joints in the body.
It all started with a tightness in my right arm muscle, nothing that was painful - it just felt very tight and i found it difficult to stretch out. A month later the tightness subsided and i started to notice some pain and swelling in my shoulder, and eventually noticed that i could do less and less with my right arm without pain. I knew something was wrong...
Everyone kept assuring me that it's probably just a torn rotator cuff or a pulled muscle. I was hoping for this too, but in the back of my mind i always knew it was something more serious because i am not the most active person, and i knew that i didn't do anything physical to cause such discomfort. One day i was talking to my sister and i jokingly/nervously diagnosed myself saying "watch i have a cancerous tumor" sure enough...
Needless to say, i am very careful with my words now ;)
Sarcoma is very random and rarely genetic. They really have no reason for it happening, and haven't done all that much research on it because it is so rare. However there are survivors and you better believe that i will be one of them.
In all honestly this still doesn't feel real, and i feel like time has stopped. There is no difference between Sunday night and Friday afternoon anymore, all I am focused on is the finish line and what i need to do to get there. I quickly learned that there is no time to feel sorry for yourself when you are in a sitution like this. I took a week or so to be incredibly upset, but now it is time to fight and get this s*** out of me.
I am so lucky to have such an amazing support system by my side. My friends, family, boyfriend, and "co-workers" have shown nothing but love and positive thoughts for me. It helps tremendously and i can't thank you enough. You keep me going.
I am being treated by one of the best cancer centers in America: Memorial Sloan-Kettering in NYC. Since i am a Sarcoma patient, i am being treated in the pediatric area. The area is bright and colorful with a young upbeat staff. There are clowns and craft time and kids everywhere. It does lift my spirits compared to the uncomfortable white walls of the adult cancer area...but at the same time the irony of children laughing and playing with tubes hanging out and no hair breaks my heart. The fact that children have to go through this overwhelms me and i end up being the big baby in the pediatric area! It gets easier each time i go, and my goal is to be the solid big sister there.
They informed me of the seriousness of this disease and grade of my cancer, but also assured me of the confidence in their treatment and surgical expertise. The doctors and nurses i have met are all amazing and incredibly positive. I will undergo 10 weeks of chemo, surgery will happen around the July timeframe, and then there will be 20 weeks of follow-up chemotherapy.
I had my first dose of chemo (High Dose Methotrexate correction: Cisplatin/Doxorubicin) almost two weeks ago, and it hit me hard. The hospital gives you infortmative cards on each of the drugs you receive, and i believe i caught every side-effect possible. I won't get into the details but i can firmly say that i've never felt so awful in all my life. However, this week i am feeling 100% - it seems like it will be waves of ups & downs.
I remember seeing cancer patients previous to my diagnosis and thinking "wow, this is horrible these people look so lifeless" thinking that the cancer is what was causing the constant look of fatigue and pain. When really, it is the chemotherapy. I'm sure there are some cases where the cancer is extremley painful, but for the most part the chemo does it. It really does feel like poison in your body, but i just keep in mind that if i feel this awful - then my tumor is feeling that as well. And that is a really good thing.
Two days ago my hair started falling out, it is sad, but i know it will grow back. Goodbye flat iron (for now!).
I think that's all for now. I just wanted a way of updating everyone all at once, so i will continue to update this page as much as possible. I was thinking about doing a YouTube Vlog of this experience as well, but i am still thinking about it. Since i can't imagine myself talking to a camera without laughing, but who knows - i may go for it. I will also try to document this through photography as well, however you are not allowed to bring camera's into the treatment areas, so i guess i can't bring my big Canon SLR camera, eh? Maybe i can sneak my small digital camera in...we'll see.
Thank you all for your love and support, don't you worry about me. I will beat this. <3
On 4/13/07, i was diagnosed with cancer - Osteosarcoma (or osteogenic sarcoma) of the right shoulder/arm. Sarcoma is a very rare form of cancer, it is actually a pediatric cancer in which children battle. It occurrs in the connective tissues and joints in the body.
It all started with a tightness in my right arm muscle, nothing that was painful - it just felt very tight and i found it difficult to stretch out. A month later the tightness subsided and i started to notice some pain and swelling in my shoulder, and eventually noticed that i could do less and less with my right arm without pain. I knew something was wrong...
Everyone kept assuring me that it's probably just a torn rotator cuff or a pulled muscle. I was hoping for this too, but in the back of my mind i always knew it was something more serious because i am not the most active person, and i knew that i didn't do anything physical to cause such discomfort. One day i was talking to my sister and i jokingly/nervously diagnosed myself saying "watch i have a cancerous tumor" sure enough...
Needless to say, i am very careful with my words now ;)
Sarcoma is very random and rarely genetic. They really have no reason for it happening, and haven't done all that much research on it because it is so rare. However there are survivors and you better believe that i will be one of them.
In all honestly this still doesn't feel real, and i feel like time has stopped. There is no difference between Sunday night and Friday afternoon anymore, all I am focused on is the finish line and what i need to do to get there. I quickly learned that there is no time to feel sorry for yourself when you are in a sitution like this. I took a week or so to be incredibly upset, but now it is time to fight and get this s*** out of me.
I am so lucky to have such an amazing support system by my side. My friends, family, boyfriend, and "co-workers" have shown nothing but love and positive thoughts for me. It helps tremendously and i can't thank you enough. You keep me going.
I am being treated by one of the best cancer centers in America: Memorial Sloan-Kettering in NYC. Since i am a Sarcoma patient, i am being treated in the pediatric area. The area is bright and colorful with a young upbeat staff. There are clowns and craft time and kids everywhere. It does lift my spirits compared to the uncomfortable white walls of the adult cancer area...but at the same time the irony of children laughing and playing with tubes hanging out and no hair breaks my heart. The fact that children have to go through this overwhelms me and i end up being the big baby in the pediatric area! It gets easier each time i go, and my goal is to be the solid big sister there.
They informed me of the seriousness of this disease and grade of my cancer, but also assured me of the confidence in their treatment and surgical expertise. The doctors and nurses i have met are all amazing and incredibly positive. I will undergo 10 weeks of chemo, surgery will happen around the July timeframe, and then there will be 20 weeks of follow-up chemotherapy.
I had my first dose of chemo (
I remember seeing cancer patients previous to my diagnosis and thinking "wow, this is horrible these people look so lifeless" thinking that the cancer is what was causing the constant look of fatigue and pain. When really, it is the chemotherapy. I'm sure there are some cases where the cancer is extremley painful, but for the most part the chemo does it. It really does feel like poison in your body, but i just keep in mind that if i feel this awful - then my tumor is feeling that as well. And that is a really good thing.
Two days ago my hair started falling out, it is sad, but i know it will grow back. Goodbye flat iron (for now!).
I think that's all for now. I just wanted a way of updating everyone all at once, so i will continue to update this page as much as possible. I was thinking about doing a YouTube Vlog of this experience as well, but i am still thinking about it. Since i can't imagine myself talking to a camera without laughing, but who knows - i may go for it. I will also try to document this through photography as well, however you are not allowed to bring camera's into the treatment areas, so i guess i can't bring my big Canon SLR camera, eh? Maybe i can sneak my small digital camera in...we'll see.
Thank you all for your love and support, don't you worry about me. I will beat this. <3
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