It's been a month. I've taken off a month in order to try to separate the "Cancer-Self" from the "True-Self". You can ask me how that worked and I'd have to be honest and say, well, not that great.

See, I read an article recently where this woman spoke about not wanting to be part of the "sorority" of breast cancer; how she didn't want to be a survivor, she just wanted to be. I thought, yes that's a fantastic idea. I want that to. So, I went about my days reflecting and politely not discussing my disease. That was until:

Until there was a Lifetime Movie where the woman gets cancer and is considered a saint by all that knew her. And then she died.
Until there was a CSI episode about this boy with Leukemia and his sister who was his donor on almost everything from bone marrow to a kidney.
Until there I was, reading a book called Hit Reply , an innocuous enough novel until one of the characters gets Hodgkins Lymphoma, which according to the author is a great relief since this is the good one. The other one, ahem with the Non-has no hope. Gee, thanks for the mindless entertainment!
Until I realized that this election wouldn't focus on the ever deteoriating environment and I found out that due to a toxic landfill by my childhood home, I probably got this disease
Until I realized that I would always have to make sure I was employed or else without insurance, and a health care plan that helped those without employment, I'd be screwed
Until I saw my brother's play, and a central character was dealing with the loss of his partner
Until Elizabeth Edwards was diagnosed with breast cancer. Until it was revealed that Melissa Etheridge had breast cancer. And Edie Falco.


So there it is. There is no denying that it is integral part of who I am. A forever part of who I am. It's one of those life experiences you can't just shrug off because you don't want it anymore. It's shaped who I've become. And while I may lament of how I wish I could go back. Go back to those moments when I didn't know, but I can't. But now it's time to move forward on the living piece as opposed to just surviving. Because it doesn't go away; I just need to learn how to let it stay.

There are things worse than cancer. Seriously. For instance, I have been put into collection by one of the hospitals I have received treatment at. However, no one can tell me specifically why. The hospital tells me that my bill has been paid in full. They can not find any outstanding invoices or what not and yet, I am getting letters from MCS telling me I owe money. And they can't tell me for what. In fact, I was instructed to "show proof of payment" and I couldn't make them understand that the amounts that they are asking for do not show up anywhere, so I don't know what I'm providing proof of payment for. It's like talking to myself.

Or how about the PET scan place that billed the wrong insurance. This is the greatest. I get a letter of denial from Aetna, and I'm like, Aetna, that's not my insurance. I call up the place and sure enough they say this: "Oh, yes, it would seem that we did have your correct insurance, however, someone here didn't put it in correctly. SO YOU'RE GOING TO HAVE TO CALL THIS NUMBER AND GET IT STRAIGHTENED OUT. But not until Monday, since it's past five and they're gone." This was their patient relations person. Admitting, that they're the one that screwed up and yet, I still have to resolve it. Un-freakin-believable. I spend half my day doing other people's jobs and resolving mis-information. It's not a joke. People are like, why do you get so upset and I'm like--because this is a constant thing. I am always following up and nothing works right.

ugh. I need a personal assistant.

Ahhh. Early birthday present.

My lease on life was renewed for another three months. :-) Which means in exactly three months, I'll also be about one year out of chemo and one year from my first all clear. Which is really exciting and I'm praying that the good news keeps up because I can never get enough of hearing "We don't see anything!"

Now onto those last ten pounds. I can only tackle one hurdle at a time.

One year. Your whole life can change in one year. I know that new parents say it takes nine months, but for me, it's been one year. And I wonder which is harder: to create life or to sustain it.

One year ago, I couldn't walk five steps. And then, over the weekend, I walked 13.1 miles with my best friends. They endured the blisters, the hurt ankles, the painful knees (and yes, we're only in our mid-twenties and former athletes) and a lot of wind, and sprinted with me across the finish line. It hurt. I kept thinking that maybe I should slow down, and then we'll make it. But everytime I started to slow down, something would happen that would make me want to speed up again, and then there we were. At the end. Done.

I had decided to walk the race last January once I finished with my steroids from Chemo and pneumonia. I figured a labor day race at the beach would be a great vacation mixed with a purpose, and somehow managed to convince my two best friends to come along. The race also benefited Leukemia-Lymphoma and I have to be honest, as corny as it sounds, there was so much positivity. People had the photos of loved ones on their shirts but there they were smiling and pumping fists, saying "I can do this" and I'm doing it for something. I mean, the Kenyans came in first, and they were like on mile 9 when we were on mile 2, and everyone was screaming and cheering them on from the other side of the track, amazed at how fast and determined and pretty incredible they all were. Everyone was just cheering on everyone else; those that were really good runners actually stayed along the course cheering on the walkers and not a snicker in the bunch. It was just the attitude of "You can do this" and finishing was more important than just finishing in a certain amount of time. And it was an amazing place to be. My body, ravaged by cancer and chemo and radiation, just kept on pushing and I was saying, this is for my friends who never stopped believing and my parents who needed me to believe, for the patients that are suffering setbacks and who are having a hard time, for everyone who ever wanted to tell me that I was facing a death sentence. For that doctor who informed me that I wouldn't be able to walk a marathon, ever again. I was buoyed up by my two friends (who let's face it are in much better shape and even at the end looked way better than my sweaty self did) who didn't complain, didn't whine and were just as happy to get to the finish line as I was because we did it together. I was still with them at the end of it; they didn't have to walk it in my memory.

And that's the point I guess. At this time last year, I was full of uncertainty. The tests were coming at me rapidly. I had gotten home from a friends' wedding and my mother was standing there telling me how horrible I looked. I couldn't understand the cough, the sweats, the itching, the unbelievable fatigue. This weekend I coughed from the cold air, was sweaty from the heat, itched from the sand and was only tired because we laughed too much, drank too much, ate too much and then walked for 3 hours straight.

Before I complain/write/dissect/analyze any part of my life, I want to say that I'm saying a prayer for all those in Florida and anyone else who might be affected by Hurricane Frances. I honestly can't imagine what it would be like to be staring at all the things that are in my apartment and thinking that they might be gone the next day. My father, the most giving person ever, owns a bunch of cottages in upstate NY. A family whose home was devastated was brought to his attention, and he's letting them stay there until they can get their lives back together. So Big Ups to Pops from Brooklyn.

So in light of the tragedy that could be taking place in Florida. The hostages in Russia. The suicide bombers that have been in both Russia and Israel (and the photo on the front page of the New York Times really made me cry while I was getting coffee and I couldn't focus on ordering and I wanted so badly to be somewhere else, doing something worthwhile). My friends and family sitting in a tent somewhere in Iraq. What am I to complain about? It just feels like the whole world is going insane, and where I would want to take refuge would be in my apartment, but then I'm locked to just my petty problems. My father was like, why take on the world's problems when you have so many of your own? And I'm just like, well take the environment. I grew up in Staten Island, home of the largest garbage dump in the world. I remember learning in 3rd grade that you can see that and the Great Wall of China from space. WAHOO! But how do I know that growing up there didn't contribute to my cancer. That all this destruction that we're doing to the environment isn't causing the hurricanes and anything else that seems "abnormal" weather-wise and isn't the reason that my body decided to turn on itself. They have no origin of Non-Hodgkins Lymphoma. There's no gene, no definitive fact-only theories. I think as humans we're always rationalizing how things got where they are. Connecting to where we're from. I hardly anyone say that they're American. They're Italian-American, Irish-American, African-American. We yearn to be connected to where we believe our families originated. If a red footed hawk is in Martha's Vineyard, the first question is how did he get there? How did this all start? The beginning, the reason. And yet, they can't tell me how I got cancer. They can't tell me what I did that might have contributed and what I could definitively do different in order to ensure that I'm okay. So I wait and see and hope that before I get to the end, someone can tell me more about the beginning.

Sometimes I feel that there are tiny little cliques within the cancer community. Groups that don't want to share their struggle with anyone else. I remember when I was starting my website, well to be honest still starting my website, that the reaction I mostly received was "Yes, well we only deal with breast cancer" or "We already donate to breast cancer projects" and I realized that although there are a lot of young men and women out there with other types of cancer, there is no voice. There is no united cancer community. We are silos of disease, focusing on our own type of cancer, negating the fact that others have also gone through chemo, radiation, the loss of a body part or a loss of freedom, a loss of youth even. As a young woman, the focus is mostly on breast cancer, or any type of womanly cancer. And here I am, with Non-Hodgkins Lymphoma ( a decidely "old man" type of cancer, but growing in the younger population at an alarming rate) and feeling so left out. There are no scarves dedicated to my disease. No magazine articles. No products that will benefit the funds that fuel the research that will get me well. Isn't that sad? That for some reason I'm looking for acceptance inside a community that no one wants to be a part of in the first place? The other frightening thing is the belief that so many people have that whatever is out there, addressing the needs of a young survivor. Or a young patient. Also when attempting to start my website I found myself constatntly saying "But I was the person looking for the information, I couldn't find it. Show me where it is, " and they couldn't but still refused to believe that what I was doing was filling a need. Tell me where are the websites that tell me how to date again? Or to help my parents deal with the fact that their daughter who has been living on her own for sometime now needs them but also needs to retain some level of freedom? Or those people in college or grad school and where to they pick up? Where's the websites that tell me how not to look so sallow and pale or how to find the perfect headscarf? What about helping me with the weight gain? Something? Anything. Something that addresses me as the whole person and not the type of cancer. And I can't even imagine what it is like for young men.

the funny thing is that radiation leaves me at risk for a myriad of problems: breast cancer, lung cancer, skin cancer and heart disease. And is that fair? that once in my life I had to deal with losing a part of myself only to discover that what cured me of one has left me prone to others? that someday I just might be giving myself up piece by piece. And yet, I find myself constantly around the competition of "whose pain is worse." And i would gladly lose because I don't want to be in pain. I don't want to have the suckiest day or the hardest news to take. I would happily hand it all over. And yet, the ironic part, is that I wind up fighting for the recognition. The recongition of what I went through and what I feel and what I'll continue going through. So a part of me wants nothing more to forget, to have the scars on my body disappear and the only remnants of the disease can be found in the get well cards stored in my closet. And another, wears the scars like a badge, screaming for the attention of "Look what I went through" and remembering that there is no forgetting. At least for me. I can't escape it and I'm learning to embrace it. And someday, I'll be able to tell all survivors and patients, "We are all truly in this together. "

It's a club that I'd happily turn my membership in but it looks like I've got the lifetime membership anyway.

There's something odd about having been sick and then seeing people again. This weekend, I visited my parents up at their lake house, as a surprise. On the way, the car that supposedly had an oil change three weeks ago, ran out of oil and made oh so lovely noises. When we took out the dipstick and looked and saw it was dry as a bone, my father's friend said, "Wow, you're lucky that you even made it here" and I said, "Yeah, well God owes me one." And while I don't necessarily really feel that way, because I'm not entirely sure how God fits into the whole thing, but if he can throw me a non-seized engine now and again, I'll take it. My father was so happy to see me; I swear, if he could find a way to have me in his sight at all times he really would. But it was interesting to see how these people who I haven't seen in ages, reacted when they saw me. Some were really excited and wouldn't stop hugging me. Others, well, they kept me at arms length or wouldn't look me in the eye. I get that a lot more than I expected I would. People who don't know what to say, are afraid to ask "how are you feeling" so instead, just kind of barely acknowledge my presence and then look awkwardly around for the quickest exit. I mean, really, if someone asks me how I'm feeling, as purely a conversational piece, I'm always going to say "Great!" And most of the time, I mean it. I do feel great. This weekend I'm going to be walking a half marathon with my best friend Laura in Virigina Beach. People keep asking "what for" and the answer is (and it does sound pretty selfish): Me. I'm doing this for me. A year ago, I couldn't walk a block without feeling out of breath. Now, I'm going to attempt to do 13.1 miles. I mean, it's got to be just as hard as that block was last year. I might not finish, but if I do, and actually no matter how far I get, I'll know that it's much further than I ever would've dreamed possible at this time last year. And that at least is something.

I had my first post-sickness, celebration of good health trip. My mom and I went to Key West. It was so beautiful. The weather was fantastic, the food was unbelievable and the sunsets really are something. Swimming in the water at the Dry Tortugas, snorkeling and checking out the coral reefs really reminded me why we fight so hard to get through life. I had never snorkeled before, never saw coral that was waving with the current, sapphire blue water and fish that were a rainbow of colors. I sat on the water staring at the horizon and thought that getting through chemo was worth this. I firmly believe that chemo might have been nine hundred times more bearable if a picture of it was on my chemo chair instead of well, just the white walls. Key West was also perfect because it was so laid back. I still don't have all my strength back. I have a lot of it back but I still need to relax during the day which kind of takes away the partiness that I once had. But there it was so unnecessary. You could just lay by the pool, walk up Duval Street (COACH OUTLET!!!), and everyone was really nice and friendly. Plus like I mentioned THE FOOD. Fantastic sushi, key lime pie frozen and dipped in chocolate, salmon, macademia and coconut encrusted scallops, mmmm. I miss it already. I'm so lucky that my mom could take me away for a while. It was so something that I didn't even realize that I needed. Some people were like, but you weren't at work for a while, isn't that like a vacation. I stare at them and think, "uh, chemo is not a vacation." "Pneumonia is not a vacation" Needing to take a day off because radiation has kicked my ass a bit--not a vacation! Taking time off to heal is not necessarily a vacation it's a necessity. Sometimes I felt like I didn't deserve to take time off because i had been sick. But it was important to take a few days just to reflect and relax. And because I wanted to. Not because I had to. It was good for my mental health as well as my physical health. Getting up late and doing nothing but relaxing and soaking up the sun (with 45 sunblock, a rashguard to swim in and a tree to sit under ofcourse) and reading a good book just gave my body time to recoup from all it's been through. Two days after i got back I was bike riding 20 miles with my best friend. I just felt so renewed. Corny, I know. But there's got to be something to it.

I miss my long hair. I really do. I find myself being very self-conscious about my short hair. It’s in a similar style that Winona Ryder had at one point only she has a prettier face than I do, so she carried it off better. I’ve never really had a desire for short hair. Trendy styles were never my thing; my hair was always straight, maybe a little layered and at my collar bone or longer. The one time I had short hair before this, was when I decided to cut my hair to my shoulders. Only somehow from “shoulder” the hairdresser heard “chin” and I walked out hysterical crying and vowing never to get a “trim” there again. Now I’m overly cautious and descriptive with my hairdressers. I was a ponytail queen; I have a drawer full of unused holders and clips and hundreds of dollars worth of haircare products. Don’t believe me? Currently in my bathroom I have the following: MOP Pomade and Molding Crème; Garnier Fructis Putty; Got 2 Be Glossing Crème; Mastey shampoo; Philosophy Remember 3-In-1; Sebestation Potion #9; Dove Foaming Conditioner; Thermasilk Conditioner; Herbal Essences Shampoo; Frederick Fekkai Shea Butter Treatment and Tocca Crema. Okay, maybe not hundreds of dollars worth (I do tend to exaggerate) but certainly more than someone of my shorn locks needs.

But why the obsession with my hair today? I asked a close friend of mine what he thought of my short hair. He responded that he doesn’t think any woman looks good with short hair. My heart plummeted and tears welled up behind my eyes. He wasn’t saying it to be hurtful; I truly don’t think he even thought about what he said. It was one of those immediate response things, that’s his opinion and that would be his answer at any given time. But as soon as he said it, I found myself reaching for my hat and putting it on my head. I hide behind my hat, I know I do. I hate how exposed I am with short hair. I like my hat as some kind of shield; similar to probably how I felt about my longer hair. I was constantly playing with it, pulling it up and down. If I’m nervous or upset I find myself mimicking those same motions. I’m always disappointed when I run my hair down the back of my head and it ends at the base of my neck.

I read in a magazine that a survivor had said, “Any day with hair is a good hair day.” I wish I felt that way. I wish that I could just put it behind me and accept that someday it’ll be back and I’ll be able to use all those potions and products lining my bathroom shelves. But the problem is that I sometimes feel like a stranger to myself. I look in the mirror and feel just so lost. “Who is this girl?” I ask. My short hair makes me look so much older; but sometimes I feel like this whole experience has also taken the youth out of my eyes. I can see it. I can see it in pictures (which I almost refuse to take across the board these days). I look at these pictures, where I’m smiling and laughing and think, “I would give anything to be back in that moment.” When I was in the hospital, I made my mother bring in pictures of me from my friend’s wedding. When I was being brought to the ICU, and I wasn’t entirely lucid, I was begging the nurses to look at the photos, so they could see that I didn’t really look like this. I wish I was a better person. I wish it didn’t matter to me. I really do. I just can’t make it go away. I can’t turn it off. I can’t help that sometimes I collapse into tears and as much as I want to believe that the heaviness in my chest will go away, at that moment it feels like all I can do is hide behind my hat and try to face the world underneath the rim.

At 1 a.m. my doctor emailed me to inform me that my scan had come back clear and that I could rest easy. Needless to say, I'm overjoyed. Happy beyond happy. It's the type of news that will sustain me until I go away at the end of the month and until I have to do this again in 90 days. Or as my friend Juliet says, "It's just four times a year. It sounds better that way". So, that's how I'll put it. 4 times a year for two years. Which sounds much better, she's right. Although I still have the back pain. The type that happens when I'm eating. It feels like general muscle soreness but one of my oncologist was like "Set up an appointment with the secretary and come in for tests." But the problem is that she's in SI and it takes over an hour to get there and I'd have to leave work early or not go to work and I don't feel like doing that anymore. I wish doctor's had more convenient hours. But I think I'll just find a specialist nearer my house. Cause it ain't worth it to travel all the way out there, particularly when she said, "Well, I'd like to examine you to make sure that where you're telling me the pain is, is where it is, location-wise" I was bewildered by that remark, because, uh, I'm pretty sure I know where it hurts BECAUSE I CAN FEEL IT! Giving her the benefit of the doubt, I thought she meant if it is bone or muscular but no she meant where I was saying it hurt. Maybe she knows something I don't and I shouldn't bad mouth her.

So for now, while I'm clear, I have to ask everyone that I know to pray and send good thoughts to someone that the Lymphoma organization set me up with as a buddy. She's so sweet & so positive and is having a bit of a rough time; and it sucks because she's one of the nicest people I've met in the recently. And I truly believe that the good wishes that I received from everyone are what allow me to train for a half marathon in September, learn how to surf this weekend & go to the mall (which I wasn't allowed to do on chemo). So if you're reading this, send all the hope and wishes over to Cranford, NJ.

My cat fell out of a window today. And then he was subjected to being in a standoff with the stray cats that live and create havoc in my backyard. Thankfully, by chance, my mother had been coming over today to drop off groceries. She noticed the cat didn't come running to the door as he always did. And then she noticed the screen was out of the kitchen window. She saw the cats that were hissing and growling and screamed "Coyote!" And apparently he reacted like "Help me!"
My mother rescued him and he's a little traumatized at the moment.

But why is this story important? Well, it's midnight and I have to get up crazy early for this test, but I'm having trouble sleeping. And I just keep thinking how amazing it is that this cat isn't even scratched or hurt or has anything broken. He fell two stories and he's still here. Which means that it's possible to pick yourself up and be okay after something that should've killed you. And which gives me a lot of hope about tomorrow.

Tomorrow is my first post-cancer follow up test. A low-carb day, followed by no food after midnight then being in this place for two hours, assuming that they do everything on time (which they never do). And then a full-day of work and waiting for the results, which I’m hoping don’t take too long. I actually discovered something this weekend—I can no longer drink. I had a beer and a half, and was not only a little drunk but also woke up the next day not feeling well. I’ve become that girl. The one who has a bit of Coors’ Light (although I was drinking Summer Ale) and is dancing on tables and going to her friends, “OMIGOD I am so drunk”. Well, not that girl specifically, but that type of girl. I used to be able to drink a couple of beers, do a shot or two and be fine. I mean, I played Rugby. I guess I should be happy that I didn’t have this problem in college, because I definitely would’ve been left home on many occasion or had my Amstel switched out for an O’Dool’s by my friends who would be embarrassed of my behavior.

Being in the hospital was horrible. I hated it. That’s not to say that there were not amusing moments. They paired me up with a 90 year old, morphine addict who was surprisingly lucid given her age.

When we got there, and were put on an oncology floor, I was surprised that there were few nurses who could access my port. My mother sternly told the nurse manager that she did not want someone to “practice” accessing my port. The woman assured my mother that this would not be the case. And then they brought in a fairly new nurse, and three managers and a doctor to watch her access my port. At first they said that she had done this “loads of times”. It turns out it was the third time she had ever done it. I felt bad for the nurse, because she looked so scared and nervous but at the same time, I wasn’t very happy about being lied to by the nurses. It also wasn’t the first time that my mother would wind up staring the woman down with a smoldering anger behind her eyes.

The thing about hospitals is that I’m unsure how anyone gets better there. I slept a maximum of four hours a day, which I’m pretty sure is not helpful to my immune system. My mother stayed with me practically the whole time. She would catch her sleep on a “sleeper chair” at the foot of my bed. And I’m sure that she got little sleep as well, and it’s amazing that we didn’t kill each other at the end of it. I love her and all, but that tight of quarters for any amount of time, with anyone, and under such stressful circumstances really tests the limits of your patience and your ability to keep your annoyance to yourself.

The doctor’s had no idea what was wrong with me. They weren’t convinced it was PCP, although I had exhibited all the signs. The pulmonologist came in one day to discuss with me the options—I could go for a gallium scan which would almost definitively give them an answer or “We can shove a rubber tube up your nose and then down your throat and collect spewtum. It’s very invasive, and quite uncomfortable, and it might not even yield any results.” What the hell kind of choice was that…again? I opted for the gallium scan, particularly because the doctor presented it in such a way that was like “Cake or Death?” And it’s “Cake, please.”

Apparently I lit up like a Christmas Tree so yes, I had PCP. But they still wouldn’t say it definitely. But they treated me for it with Bactrim and Steroids and within hours my symptoms began to subside. There is a catch here though—the doctors, most of them, were completely confused as to why I had PCP. On normal regimens of CHOP, it was basically unheard of. So because they were so confused, they tested me for HIV and kept asking me if I was HIV Positive and not telling them. And they treated me like I was HIV+. I was so disheartened to know that they were so confused but also because they didn’t believe me.

My oncologist however was convinced it was PCP and told me from the beginning. How did she know when all these other docs were so confused? Ahh, the catch. When I went to Sloane-Kettering they told me that on the every two weeks of CHOP, they had seen a lot of PCP, so they were giving Bactrim as a preventative. Shocked, I passed this information onto my doctor, thinking she didn’t know. However, she did. Her answer as to why I wasn’t made aware of this: MD Anderson doesn’t give Bactrim as a matter of practice, so she didn’t. She put me at risk without telling me about it. I was so devastated and angry. It should have been my choice as to whether I could take the antibiotic. I almost died, because she didn’t feel it necessary to give me something that would’ve caused no real ill side effects.

The dying part. I forgot about that. The night that I was put on the Bactrim and steroids, I was also put into the ICU. My pressure was dropping fast and significantly, my Pulse Ox was at 88 and my pulse was racing above 145. They wheeled me up there and placed me into this room. I had an oxygen mask on. I had already begun to feel better and let me tell you—ICU is not a place for anyone aware of their surroundings. First, they started by placing all those cold, sticky things all over me. Then I was hooked up to every machine conceivable. Then, they told me anytime I needed to use the bathroom (a commode type of thing in the room with me) that I needed to buzz for the nurse. They sent my mother home. The front of the room is all glass, with a not completely helpful curtain across it. So once I had to pee, I called for the nurse. A nurse’s aide comes in and says “Okay, I’ll get you a bucket.” I panicked. What the hell did I need a bucket for. I could walk to the bathroom it was five feet away. I was like, no, no bucket please stop robbing me of my dignity. So, she allowed me to use the bathroom and shut the curtain (as much as it would go). Eventually I figured out that the wires would let me go all the way to the bathroom so I didn’t need to call the nurse. People’s vents were going off all night, there was screaming and crying and needless to say I didn’t sleep at all, even with Resterol (sic?) in me. The nurses were very rude. Apparently one of the doctors had called to find out of if I was there, and if I was okay, and they told her that they couldn’t say. Which seemed to make no sense to me because shouldn’t my doctor be able to find out if I was alive?. By five a.m. I had apparently drifted off. At six a.m. the phlebotomist came in to draw blood, and was grabbing my arm aggressively. I woke up enough to tell her that I had a port accessed and that they didn’t need to draw blood out of my arm (which was still sore from being injected at the gallium scan). She flipped out, telling me that only a doctor could draw blood. So they paged Dr. Doogie Howser (he literally looked nineteen) who said that he’d draw it later. The phlebotomist glared at me and told me she was writing “Patient refused blood-work” in my chart, which wasn’t true, but whatever. At seven o’clock I took myself off oxygen. I waited until nine to call my mother, growling into the phone to get me off the floor. By twelve I was back downstairs.

The best was when I asked the doctor why he had put me in ICU. He said, “Well, we didn’t know which way you were going to go. We needed you turn a corner. And here you are!” And then I regretted asking because I didn’t want to know that I had been near death at all. Because I hadn’t felt like I was dying. I would think that I’d have an inkling or an idea and the fact that I didn’t feel like that made me more nervous. It was the same thing as finding out you had cancer. I hadn’t felt well, but flu-like unwell, and did not feel like it was something as serious as cancer. And then to find out half the time there are no symptoms, it’s frightening to think that as your body is shutting down you’re mostly unaware that anything is so very wrong. And now, if I have a cough or a backache or anything that is generally just part of living, I feel like it’s a symptom of something far more insidious and that they’re going to turn to me and be like, “That backache that you thought was just from sleeping kind of weird is really your lymphoma returning.”

Because I was so susceptible to getting sick, my roommate had been moved out. She had caught a horrible cold in the hospital and they were worried that she’d get me sicker than I was. So for two days I had the room to myself, which was nice. My mother and I watched a lot of TV, which you had to pay $6 a day for. One night we watched “The Christmas Shoes”. Not being country fans, we weren’t truly prepared for this movie. I kept saying “Oh she’ll get a heart now” or “Those shoes can’t be it, they’re horrid” or “Rob Lowe dies and donates his heart” but that never happened and in the end, the kid gives his mom these horrible shoes on her deathbed and Rob Lowe doesn’t get divorced. It was such a horrible movie and we were looking at each other like, what kind of Christmastime crap is this! And then I got a new roommate. She was a few years older than me, and dying. It was horrible. The room was always quiet and I hated to walk by her bed on the way to the bathroom. But she didn’t want to be moved. She liked to be in the room with my friends and family coming back and forth and I really felt bed for her but I was afraid to go to sleep because she was so close to death and looked like she was going to code any minute. She also didn’t have a DNR, so I was petrified at what might happen. She refused treatments and to be intubated and she had so much trouble breathing that it would come out in raspy whisps of air and she would inhale gulps of air and cough and I just wanted to help her. I don’t know what ultimately happened to her, but I think she passed away. I hope it was peaceful.

Finally, on Christmas Eve, I was let out of the hospital. Apparently the doctor that was supposed to write my release two days prior, was in India for a month and no one had bothered to inform anyone else. So two extra days of watching bad t.v., and eating hospital food (or not eating it) because no one could write a friggin’ memo?

Sometimes it hits me at weird times. The overwhelming part of all this; the utter loneliness of being in this classification of cancer survivor. My weekend plans had been shot after my friend’s car failed to work. Something about a computer chip. So, I was looking at a weekend at home with my books, my t.v. and my cat. This wouldn’t have been so bad if I hadn’t really been looking forward to going out and doing something for a change. I was excited to be going somewhere and getting away. But there I was on Friday night, watching the end of Gia on HBO. And I know that she had AIDS and it’s a movie, but I watched her in the bed, a shadow of who she was and I had to shut it off. I couldn’t think about it. And I went to go into the kitchen to get myself a glass of water, but I suddenly couldn’t walk any further and slid down the wall and just cried. I needed to be distracted for a while, but I was only met with silence and the fact that half my friends were at the Shore or with their boyfriends and I was here, contemplating the fact that I didn’t want to be dying; I wanted to be just fine and if I was going to die I wanted it to be quick and I didn’t want to know about it. It wasn’t an existential discussion at a bar over martinis about life and death. It was this internal dialogue, a raging debate inside me: how do I go on with what happened and how I’m going to deal with what has yet to be? What if it comes back? Before I was diagnosed, there was no “what if”? It simply wasn’t part of my consciousness. Sure, I wondered if I would get married and have kids—more so out of the fact would anyone be willing to make that type of commitment to me, rather than would I be around long enough to entertain the option. But now, I panic when I feel tired or a little back pain. I know what has come before and I know what could come again. And I don’t to have to do it all again (and I truly applaud the people that do. It’s amazing to me. The strength and resolve and spirit). I didn’t want to be worrying about lying in a bed with IVs and living out my days knowing that when I went to sleep that night I might not wake up. I wanted to be laughing and dancing and forgetting about the fact that I have to go for a PET/CT Scan the next week. A lot of my friends don’t even ask me to do stuff anymore; mostly because they don’t think that I can do anything because I said that I couldn’t for so long. They feel bad to ask and have me tell them that I can’t. And I can’t keep having my friends change their plans because I’m tired and can’t do much. And I hate after a long weekend being asked “So whaddya do?” And I have to admit to nothing. Shopping and cleaning. Got to watch The Manchurian Candidate, The Hudsucker Proxy and Bowling for Columbine. And the silence on the other end, like the disappointment that I didn’t do something better; that I’m not totally living life to the fullest as I should be. “How about you?” I’d ask, and I’m met with “I had a really good weekend.” And they sound like they mean it. They went to the beach, went to parties, went to a cabin with their families and I was home, putting together my new bathroom accessories. It makes me feel like I’m failing at my twenties, some unknown barometer of how well you know how to party and live. So I’m stuck in two places at once. On one hand, I’m dealing with the fact that I just got over this huge life ordeal and should be proud of the strength and resolve that I had to do so. Reconciling with myself that it’s going to take time to get back into the normal swing of things and that dating and going out and all that stuff was put on hold so I could like, live. And then to realize that I am getting my life back and I can be a normal 24 year-old again but I’m not even sure what that means anymore. I’m not sure what I should be worrying about. Should I go and get this great dream job because who knows for how long I’ll be around and why waste my time filing and faxing? Or if I approach life like the news that I’m going to be dying is coming, does that mean that I’ll live life to the fullest any more or less? What should my priorities be? Does it even matter? You know what I wish? I wish I could put my hair in a pony tail. Maybe something that simple would make it better.

After I had finished six rounds of chemo, every other week, I was getting set to take my PET Scan to determine where I stood. I thought that the general battle was over. Almost ten days after my last chemo, my friends visited me from England. We sat in my apartment and watched E! and then a soccer game, through which my friend Karen continually rolled her eyes as her husband Chris watched with excitement. When we got hungry, Chris begged to get Subway, because he really loved Subway. And I had coupons. All in all it was a lovely visit. And then, for some unknown reason—not because I felt sick—I took my temperature. It was 100.4. I couldn’t believe it. I didn’t feel unwell, but knew that a temperature above 100.5 was a reason to call the hospital. First, I called my mother and told her. I swore it was that I was just tired and needed to drink more. She said okay, and to take it again in a little bit and we’ll go from there. When I called her a half an hour later, she was already on her way in. We called the Oncology Center, and after not hearing back for over an hour, we beeped my doctor. She told me to head to the ER and get a CBC done. It was probably nothing. Happily, I got in the car and went to the ER; I had to call ahead of time to tell them that I was coming so that they could put me in reverse isolation. The first time I had gone to the ER was about a month into treatment. I had spiked a fever, had a runny nose and a cough. I cried when they put me in the room and told me I might have to be admitted. I begged and pleaded not to be. Because of a mysterious outbreak of something or other in the hospital they thought it would be better for my overall health if I went home. So, they put me on Cipro and Augmentan (sic) and sent me home. I was better in a few days; I had just a cold but on chemo a cold could kill you. But this time I wasn’t so lucky and it wasn’t a cold. But more on that. So I walk into the ER, tell them all I need is a CBC and that was it. However, they were like “uh, there’s protocol on a chemo patient.” And I was whisked away to a private room that had been recently scrubbed and told to put on a gown. And the inevitable “pee in this cup”. Damn! And then sitting on the bed, my best friend who happened to be the PA on duty that night wandered in. She looked sick to see me. They accessed my port and then drew blood for cultures. I had to take a Chest X-Ray. I was put on IV antibiotics. I so very badly wanted to go home. I kept insisting that I didn’t feel sick, I wasn’t sick, that I was just tired and needed to get out of there. But more than that, I wanted them to call my oncologist and tell her what was going on. She had told me to have them call her as soon as I had gotten there. I kept insisting that it was important and I was being ignored. I didn’t want any antibiotics or medicine until they cleared it with her. “It’s protocol,” the smug, self-satisfied bastard of a doctor told me. “I understand that, but I need you to call her.” “We’re not calling her until we know something.” “She asked me to have her called. She needs to know what is going on.” “No,” was the simple reply. He told me that my chest x-ray showed a “haziness” and that I had pneumonia, case-closed and was going to be admitted for overnight observation. I was put on Avelox and that was the end of it.

The next day, I woke up with a horrific cough. Just to note: this was one that I hadn’t had the day before. My hospital room was freezing. I had hardly slept. The oncologist on call visited the next day, told me he wasn’t convinced that I had pneumonia (the X-ray was apparently not as definitive as the ER doctor had said it was) and that I could go home on PO medication. Yay! Or so I thought.

The next few days were hard. The symptoms ebbed and flowed. One minute I couldn’t breathe walking to the bathroom. Another I was fine. At some points I couldn’t even talk. I had become very tachycardic and tachyptnic. My mother kept calling the Oncology Center, and at one point was told “If she gets any worse, bring her in.” My mother’s response, “What like when she’s dead?” Frustrated, they took me in anyway. At the office, my pulse-ox was 95 and my heart rate was 144. Still, I wasn’t admitted (apparently no beds). But we waited there for 6 hours. Eventually we went home, were I was put on a different antibiotic and labored upstairs to bed. That night, my fever spiked at 103. I was freezing and begging my mother to make me warmer. She said I was burning up and held me and rocked me back to sleep. The next morning, she said that there was no way I was getting better and needed to be in the hospital. As soon as a bed was ready, they carried me downstairs to the car and I was gearing up to spend my holidays in the unit.

On my way to work, or out to lunch, or even on my way home, I'm always amazed at how many people actually smoke. And I have no problem with anyone who wants to smoke. Me--I don't. Never did. I can't. Smoking would be signing a death certificate right now. It would negate all the chemo and radiation and besides I'm not really a fan. It smells. My neighbor's downstairs are chain smokers (she was recently diagnosed with non-operable lung cancer) and my apt. smells like I smoke. My clothes reek. I have to go buy special expensive laundry detergent to get the smell out. But I digress. I really don't care if people want to smoke. Because while it's a proven fact that it causes a myriad of diseases, I don't think that line will really work to deter people. Why? Well, new research shows that soda causes cancer. Apparently tampons cause cancer. Nutra-sweet causes cancer. The sun causes cancer for crying out loud. So basically at any point in any day you can be exposing yourself to some sort of risk.

But there is an annoying thing about smoking. I can not be around someone who smokes. It really can hurt me. I get nervous that second hand smoke will do more damage to my lungs or create problems. And whenever I tell a smoker, "please don't smoke in front of me," they get angry like I'm preaching to them. When I'm not. I'm simply asking not to increase the rate in which I might die by blowing smoke in my face. One time, when I was just getting over pneumonia, I was online for the bus. This woman was smoking and it was going in my face. But I had a bit of a nasty cough left over from the pneumonia so I was coughing in general. And because it was so cold, I was holding my scarf across my mouth so that I didn't aggravate my lungs with the cold air. She got so mad at me and started cursing at me and telling me how disrespectful I was and if she wanted to smoke and blow it in my face she could and if I didn't like it to get to the back of the line. First, I was so taken aback that she would flip out like that. And then I calmly said, "Yes, you have every right in the world to smoke. I'm not lecturing you. However, I just finished chemo and being in the hospital with pneumonia, so between the cold and your cigarette smoke, I'm going to be coughing. And if you have a problem with that, then I suggest you stand somewhere else."

Sometimes reading about other's struggles is a good idea. I was just on planetcancer's forums, lurking as it were, and reading about those who are in remission, and have been for quite some time, and thinking "yes, that could be me." Only, just as often, I find myself staring at the words that have come to haunt me: "this is dedicated to (his/her/their) memory." My stomach drops, tears well up behind my eyes, and the sadness sets in. Because it's a reality. I try to act like I'm not living with cancer; the disease has been eradicated from my body and there are no more remnants of it to be found. But then I think, no, it's still there, waiting for a moment when I let down my guard, when I'm happy again, just to come back and take me down again. I pray that my name is never in that empty slot of "Dedicated in loving memory. She left us too soon." And soon means young. Before I have time to lament about crow's feet and kids. Before I can receive an invitation to my tenth high school reunion; and promptly turn it down. Before I can bitch about gravity doing a number on my body and how my eyesight is failing and that things sure ain't what they used to be. Before I can get married and have a house on the beach and stare at the ocean while on a swinging on a hammock. Before I can learn to surf or mountain climb or go to an exotic island. Before I can buy my own car and not have to worry about the payments because I actually saved enough. Before I can forgive myself for whatever mistakes I've been able to make in the short time I've been an actual adult.

I try not to give my fears any voice. Because it feels like if I say it, it makes it true. Which means that if I say "It's not coming back" that will make that true, but for some reason it never seems to work like that. It doesn't mean that I live everyday waiting for the other shoe to drop. That I'm not "Staying Positive" (see cliche post). It just means that there are moments when the idea of death, of dying, of having an epitaph comes and sits next to me. But I once told my father "You can't live your life afraid of dying." And that's what I tell myself when these nagging thoughts come to play mind games. And sometimes I'll take an Atavan to make sure that I can make it through. But just as often, those words are all I need to remember that all those things I mentioned above are still within my reality.

Well, same day but two different posts. The surgery went very well; apparently the post I had from yesterday didn't go through and well....here we are. I am very sore right now but so very happy. Not from the Vicadin (which I always spell wrong I think) either. It was everything that was to be expected; got there at 7 and as soon as we walked in there was a woman behind the counter waiting. I walked over. She looked up at me for a split second before lowering her head. I said my name and she didn't acknowledge me with her eyes, or a smile, just a "yeah." Sign this, mark here, insurance card please, sit there and we'll call you. All without making eye contact once. Pretty impressive. I really like that the people that they have behind the desk welcoming people before they go under the knife is so pleasant.

And then the waiting. I'm convinced that if I added up all the times I've waited in the past nine months, I could get a whole three days back. Walked into the back room ; my mother came with me. She's a nurse at that hospital, so everyone addresses her instead of addressing me. Half the time they think I'm 16. It's actually really annoying. Not that I mind my mother speaking up and giving information that I may have left out, but I do mind when they speak with her instead of me as if I'm incapable of giving an accurate recount of my health history. But eventually I tell them to please direct their questions to me and they respect that although they do sometimes think it makes me a little difficult.

Then you have to take the pregnancy test. Now, since all that has happened to my body, they tell me my chances for getting pregnant at some point in the future may be the same odds as the Bills winning a superbowl. However, and without fail, every time they hand me the illustrious cup to pee in, a nurse must tell me the story of how her friend/sister/neighbor/cousin/coworker/friendssister'sneighbr'scousin'scoworker also had cancer and low and behold now she's got three kids. It's very sweet; but funny because everyone does it. Plus at this point in time I'm like--uh, no kids is fine by me!

Then the inevitable IV for the anesthesia to come later. I always tell my mother she can not come to recovery until I am completely coherent. I do not need her asking me about whatever questions she has about my teenage and early college years. Or now even. Not that she would, but I would think that it would be tempting for a parent to find out exactly how many parties were held in their home. I remember one time my friend L and I both told our parents we were staying with the other one for a week. And then both sets of parents went away. I'm lame and wouldn't let anything happen to their house but sure had fun with the freedom at L's house. :-) Well, she didn't even need to ask me under anesthesia. She could just read this.

Then you walk down the hallway. Now you only have those horrid hospital robes on and you have to take off one of them. So trying to maintain your dignity is a little hard, clutching the back and lying down on the table to make sure nothing is showing. Because in five minutes while you might be lit up like a Christmas tree and not care, at that moment you do care, because there's a cute tech in the room, you have that horrible blue hat thing over your head and the hospital booties and the mumu (sic?) hospital robe is not helping your chances. Well, there was no chance anyway, but still...then you're on the table having things stuck to you and strapped in and it's all well and good because they're starting to sedate you and you're not having a care in the world. You feel like you could get up and walk out of there towards freedom just the way you are--much like Barbara Streisand at the end of "Nuts". Only there's still a receptor in your brain stopping that from happening. Then you're out but then you're back! And the OR is hopping. I can hear the chatter but not sure what they're talking about and slowly I came to and realized that they wanted to put music on in the OR but it might be Eminem. Hmmm. Okay as long as it isn't Britney or Jessica Simpson massacring a perfectly good Berlin song, I'm fine. One, two, three the port is out you're in the recovery room being hooked up to the final monitors of the day. Yay! But you know what is always inevitable with me. They always forget to take off one of those stickies. Always. So today as I was changing, there was one last sticky thing, which I don't mind them taking off when I'm feeling no pain, but now I'm feeling all the pain and it just sucks ripping it off your skin. But now it's time for lots of water, good ER reruns, sleep and some sympathy. And the port is GONE!

Since I basically am recapping my entire eight months with cancer, but things that are relevant are happening now, this is my break from the past and to talk about tomorrow. I am getting my port out. I am really excited about this. People told me to keep it in for months, maybe even years, because “just in case”. And for a while, I thought this was a good idea. But then it occurred to me. Why would I keep it in “just in case”? Just in case what? I got cancer again? Because that could never happen. And I’m putting all my eggs in one basket and saying it’s not. And then if I keep it in, I’m allowing for the notion that it could be a reality again. Well, in my eyes anyway. And I just don’t want to do that. I don’t want to let it be something hanging over my head. I don’t want to have to go to the hospital every six weeks to have it flushed for the next X amount of years. I don’t want to have to worry about bathing suits or dresses or shirts that show off this bump under my skin. I don’t want the last remnants of me being sick to be something I carry around with me for awhile under the assumption that I am going to get cancer again. I’m prepared for that event should it come darkening my doorstep, and if I do relapse it’s going to be a whole new set of issues anyway. So for now, I’m taking the damn thing out and that’s that. Apparently it’s supposed to be a ten minute ambulatory surgery, but I have to go into the dreaded operating room, get put under, wear that stupid plastic cap and do all the other things that go along with getting surgery. And universe-willing, it’s going to be the last time I go through this rigmarole for quite some time. Even though it’s a short surgery it doesn’t make it any less scary for me. It’s the same way that I feel whenever I get in a car now. Even though I’ll probably make it there and back in one piece, I’m hyper-aware of all the things that could go wrong: someone could swerve into our lane; someone could be yammering on a cell phone and not paying attention; someone could go too fast; and a myriad of other things. I watch the way people drive and I’m always afraid that if I could get cancer at 24, the chances are good that one of these idiots cutting in and out of traffic could sideswipe me. It’s a horrible way to be. I also have had to stop watching Law & Order because I’m always freaked out about that show. But I digress. I’m also scheduled for 8:30 in the morning. Which means I have to be there at 7:00. Which also means that I'll have less time to stress by the time I get to bed and the time I get surgery done. Which is definately good for someone like me. Crossing fingers and hoping for the best. The remnants of me being sick will be gone!

Cliches become a shorthand for people when you become sick. While some are helpful (though I'm at a loss right now for which ones actually don't make me want to scream) there are those, such as "Every cloud has a silver lining" that should remain unsaid. Some other favorites that people ought to not say *although they have:

1. This too shall pass
2. Whatever doesn't kill you makes you stronger
3. Time heals all wounds
4. Everything happens for a reason
5. Turn that frown upside down and let a smile be your umbrella
6. Only the good die young
7. Life's a bitch and then you die
8. Anything you need, just ask
9. What goes around, comes around

I'm sure there are more but those are the ones that come to mind. I also hated it when people were like, "You have to be positive." ALL THE TIME. I know that it's important to keep a good attitude, but there are going to be times when the world is just overwhelming. You're going to cry. So many people were telling me to be strong, not get upset, and so on and then I would actually feel guilty for crying and started to count how many times I cried. I was proud for not getting upset. As if this is a contest of who can handle it better. Some people would be like, "don't be self-pitying" if I lamented about my appeareance or what not. Okay, if there's ever going to be a time when a little, I didn't say a lot, of self-pity is going to be okay, now is about that time. A lot of people don't realize that they're doing it, they think that they are being a good influence. But they wind up invalidating your feelings or making you feel worse. Then you start to not want to talk about things in front of them. I felt that I was depressing people or angering them and I couldn't be truly honest about how I felt because I was worried about their feelings. It just became a mess. I'm not even sure that it's all resolved because I'm not sure that there's any real set list of rules for this. But I guess we try on a daily basis to just make sure that we don't take all our anger on those who care about us and they try to be mindful of our situation. And there's a tentative truce set up that will eventually become the working vocabulary for all those involved. At least that's the best to hope for. No one is ever going to say the perfect thing, unless they whip out index cards or rehearse it beforehand (and yes that has happened) so I learned to be a little more forgiving, although I really wish more people would be like, "what the hell?" or "damn, this sucks." It's a little more honest and a lot less trite.