Hello there...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Physical therapy and upcoming events

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

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

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

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

Again, the child in me comes out.

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

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

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

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

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

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

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

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

It could be nothing, or it could be something.

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

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

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

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