Extremely long [and detailed] post

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

:)

Surgery It’s OUT!!!

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

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

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

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

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

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

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

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