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. : )
Sunday, October 7, 2007
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.
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