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.

Again a break from the cancer thing. I hate when it rains in the city. Not because I hate the rain. Because I hate the people with the umbrellas. How they have the ones that jab you in the eye. Or How fewer people can walk on a sidewalk with the extra bulk. Or how there's that one guy, with a friggin' golf umbrella taking up half the street and wielding it around ensuring to knock you several times. It's annoying. I'm starting to become a fan of ponchos. Not that I'd wear one, but I see their appeal (although it is weird to see a whole family of tourists in a matching one in a place not Disney World).

I feel like I've always been at war with my body. That fight hasn't changed much. Although now the stakes are higher. I feel somewhat betrayed having got cancer. Trying to think if it was the countless diets I went on or the Burger King I love to indulge in now and again. Was it really the diet soda or frozen yogurt? I've always been on that weight roller coaster. The sick thing is that when I first found out that I had one of five things (but only two of them with names) and I realized that the treatment for sarchoidisis (sic) was Prednasone, I freaked. Like, no way am I going on a steroid for a month. I was like, at least let me get the thing that makes you skinny. Hey, I said it was a sick thought. And when I was first diagnosed I lost so much weight and was happy. Okay? That's how warped my mind is about this weight thing. People complemented me on how good I looked--one person actually said to me "You look like you did at your Sweet 16". And I was like "Thanks!" when I really needed to process and be like, uh, I'm a grown ass woman and I don't need to look like I'm 16. Plus, I'm so pale I'm almost translucent now and back then I had the nerve to be tan. The weight didn't stay down. I put it back on with the steroids. But I didn't gain more than five pounds over what I was, so that was fine.
And then when I went into the hospital with pneumonia and I was put on massive steroids for three weeks. I gained about twenty to twenty five pounds. I was devastated. Clothes I had bought in December, a mere month before, no longer fit. My face was bloated. I had to go buy new jeans. I was going back to work in elastic banded black pants; none of my suits fit. It was so hard for me. First my hair and then my weight. People couldn't understand. they were like--but you're better! you're living! I wish I could explain it, I really do. I wish i was better than that, not worrying about the petty pieces of life. But I'm not. They are still the things that bother me. I hated not fitting into my favorite clothes. I hated that I was bald and chunky and not looking like myself. I hated it more than being sick.
Radiation came and then I couldn't eat for a solid week. It hurt to swallow--first in my throat and then I would get a weird pain in my back. And for the last two weeks of radiation and then for about a week or two afterwards, I really didn't eat very much. I find, even now, that I have a reduced appetite. I've taken off about half of what I put on. And yeah, it's great to fit into my clothes again but I feel like I've won the battle but lost the war. Because, it should be that I'm healthy--walking four miles a couple of times a week--and that should be what i'm focused on. And i'm trying. I'm trying to not care about my fat jeans being in permanent rotation. Because the truth of the matter is that whoI am goes way beyond what I see in the mirror. Who I am, in my heart, is how i beat this disease. And I just can't let that self-doubt and self loathing win. because then the disease wins too. And I just can't let that happen.

When I was in High School, or even now, I’d always have this fantasy that I’d be walking down the block and someone who I broke up with or moved away or whatever would be standing there waiting for me and it’d be all romantic and movie like. That never really happened. But, there was this one time when I saw my best friend and he just looked so happy to see me. We hadn’t seen each other in a while although we talk all the time. And believe me, I was beyond happy to see him. It was the closest to that movie moment that I’ve ever gotten. And it made me realize how important he was to me. And how happy I was to have him in my life. He’s probably one of the only people that sees me for who I am and still thinks I’m fantastic. Like that I watch Angel and Buffy; that I have a Spongebob Squarepants water bottle; a good glass of chocolate milk at a diner can solve any problem I’m having; that when I’m happy I skip down the block, even in heels; that I get angry at people who do not observe elevator etiquette; and a million other quirks that basically add up to the fact that I’ll never be that perfectly put together career woman. When I was sick, he was the person who wouldn’t let me use that as an excuse. Who never saw me as sick. And who made the day not revolve around my illness and would talk endlessly about whatever problem was bothering him and allowed me to be his friend. It was so easy with us. I don’t know what I’d have done without him. So this is his shout-out.

I bring this up because I was speaking with one of my friends yesterday, and she and I were discussing a couple of things. While I’d like to think that this whole experience hasn’t changed me fundamentally, that’s unfortunately not true. I used to be one of those people who just gave and gave, forgave any slight and continued to be hurt and disappointed by people, but I never stopped. I am not like that anymore. I’ve been so hurt by people I considered my friends, and I walk around with this weight on my shoulders. I feel that I’m not a perfect person, have made many mistakes, so who am I not to forgive these people. I have spoken to them about my hurts and though they swore up and down that they would change and now that they knew what I needed that they would be there for me. But things haven’t changed. I’m still the one to call. When I finished radiation, the phone didn’t ring with a question of “how are you doing?” In fact, it still hasn’t. And when I do talk to them during the week, I get irrationally angry and annoyed and wind up getting off the phone more bitter than when I hadn’t spoken to them at all. I realized that I can’t forgive them. I simply can’t. There’s this part of me that is like, you want to go back to the way things were, yakking about the O.C. or Friends or whatever other mindless things we can talk about, but I can’t do that. And it’s affecting my relationships with the people who have been there for me. By focusing on the negative people that have been milling around my life, I’ve forgotten to focus on the people who sent me weekly cards, showed up to my house with movies and to watch Gilmore Girls, who bought me a funny book on cancer or a book that they thought would help me get through this, who traveled a million miles to get here. Those people are the ones I should be focusing on. And I’m going to have to drop the baggage. I liken trying to be friends with these people again like getting back with an old boyfriend. Yeah, you had some really good times and you were good together once upon a time. But there’s a very tenuous thread holding you together now; you’re kind of only back together because it’s comfortable and you feel like you owe it to your history to try again. But all the “I’m sorry’s” wind up not outweighing all the negative feelings and pretty soon you’re fighting over what movie to see like it’s the greatest decision in the world. For some reason, in relationships we’re always trying to salvage something, to fulfill our obligations to those that we profess to love and we have (I have) a hard time accepting that this person is just not someone that should be in my life. I just don’t have the patience and tolerance for people like I once did. And I’m going to have to accept it. They tell you that forgiving is cleansing, but holding on isn’t. We need to be able to let go of the people who weren’t there for us and continue to not be. It’s not holding a grudge. It’s taking out the negative influences that are holding us back from moving forward. Because it’s time to accept that I’ve changed and that the person I once was, no longer exists. But I’d like to keep the good in her and move forward from there. And I want to do it with the people I love and trust. Because those are the people I want to now dedicate this to. The friends and family that truly are selfless and caring individuals. And I’d also like to thank them again.

I never realized the power of smells until I got sick. I can't smell popcorn anymore without wanting to throw up. My mother was sitting in the back seat of the car, eating a whole bag of it when I got diagnosed. She also had this weird purple thing tied to the back of the front seat which she proceeded to put the totally not empty bag into and leave it there so every time we drove to the hospital, I smelled popcorn. I have some trouble at the movie theatre.

I also had to get rid of many of my once-favorite perfumes. The very thought of them often led to some time of bought with an upset stomach, but the actual smell of them completely set me off. So I sold my J'Adore, Versace Baby Rose Jeans, Dyptique L'ombre Dans Eau (I think that's how it's spelled) and Bvlgari on ebay. I named them so you can see that I actually had nice perfumes. and it wasn't because I was spritzing on some Jean Nate that I was in a dire need to get rid of them. I couldn't stand the smell of my mother's favorite perfume, Clinique Wrappings, either. It made me so sick. I would beg her to not put it on when I was at their house. But the worst part was that a coworker wore it, and has this tendency to be a close talker and I am pretty sure the revulsion would show on my face when she was attempting to be kind to me. I'm pretty sure she hates me now.

I also couldn't stand the thought of foods. Pasta? Ew. Pizza? My Brooklyn roots were betrayed cause absolutely not. Eggs? Not a chance in hell. I wasn't getting enough protein so my mother was sneaking some Atkins protein powder into my shakes. The problem was that the powder was Cappuccino flavored and she was giving me fruit shakes and it was the most horrible, distinctive taste you could possibly imagine. Once I refused to touch them, she started giving me ice cream shakes and then, I could only barely taste the protein powder. My mom was sneaky like that. But truthfully, so many things would have a strange effect on me, it was amazing that I ate at all. I hear that some people wind up with an aversion to meat. Not me. I wanted meatballs, like all the time. And rice pudding. I was living on those two items for quite some time. Then my mother bought some Boost and that was okay, if a bit thick. then she tried that Carnation Instant Breakfast, in Skim Milk, and just...no. It was pretty horrible actually. I appreciated the effort to make sure I was getting nutrients but the experiments were starting to make me feel worse than the chemo.

The best was when I was in the hospital and I simply would not eat the lunch or dinner they brought by. People would be in my room saying, "But it looks so good! I'm sure it's great" and I'd be all like, "Sure then you eat it." And then the shifting in the seat and the averting of the eyes would start and they'd hem and haw about how they just finished eating or were heading out to eat and I'd be like, "Yeah. I thought so." However, my uncle, who is notorious for eating everything and everything and being very protective of his food is a different story. He called on his way to visit me and asked if I wanted any outside food. He had discovered early on in my illness that we had a love of food in common (he actually said, "wow this is great. We can talk about food!" and I was like, "uh, yeah, I have other interests too, but food! yeah! safe topic"). i told him I was craving some Burger King. He promised to show up with a Whopper and Fries. I was so excited! However, when he arrived he had no food with him and I had just sent the food tray back. I looked at him (and he had come with his wife) confused and somewhat betrayed. The poor man was so hungry that he beligerantly asked me where my hospital food was. When I told him I had sent it back because it was gross and I wouldn't eat it, his wife was said in a really snotty tone "Well, he would've; he's obviously very hungry. Why would you waste food like that?." Lady. I've got a million drugs in me, have a 90 year old morphine addict for a roommate, have had people waking me up every three hours, so I haven't gotten a decent night's sleep in almost a week and you're berating me for sending my food tray back because you and my uncle (who I love dearly) arrived empty handed? The hell? And that whopper was something I was really looking forward to. I have yet to decipher the mystery of why the burger and fries did not come with their visit, and I probably don't want to know the reason. However, the moral of the story is this: ALWAYS BRING FOOD. It'll always be welcome and when someone in the hospital specifically asks for something--stop of and get it. Because there is only so much Jell-O, yogurt muffins and very unique looking lasagna that one person can take.

Sometimes I would love to blame all my idiocy on chemo. Unfortunately, I can’t. But I will say that chemo has made me much more forgetful. I used to never forget a birthday; now I actually have to put reminders in my Outlook and on my phone and send emails to myself. If I walk away from something, it takes me a lot longer to remember what I was doing. I forget what I’m saying midway through a really good argument. I repeat myself several times before I realize I’ve told the same story to the same audience. My excuses for things while creative, are unfortunately also true. They sound like a “My Dog Ate My Homework” type of thing but I couldn’t make this stuff up if I tried. For instance, I once got out of the shower and was getting ready for work when I put on a camisole and then my skirt. I slipped on some shoes and was out the door. I kid you not, I was halfway down the block before I realized—I didn’t have underwear on. I ran back to my apartment and was like, “Really, who forgets underwear?” I guess that I was planning on putting on after I put my skirt on, but truth be told, have no real idea what my thought process was on that.

But this morning, well, I don’t think I can blame it on chemo. I had taken my wallet out of my bag to go to the dry cleaners. When I got back home, I forgot to take my wallet out of my everyday bag and put it in my work bag. So, this morning all proud that I’m up early enough to get the early bus and all, I get to the bus stop only to realize my wallet was not with me. I had to walk all the way back home to retrieve said wallet and then in a fit of fiscal irresponsibility brought on by my utter stupidity (and if anyone asks I will stand by my statement that my hip was bothering me) I took a $4 cab ride back to the bus stop. The cab didn’t even leave me off as close as I really needed to be to the stop, so I had to cross 5 lanes of traffic and run to catch the bus anyway, and then I couldn’t get my Egg and Cheese on a bagel this morning because I had already spent that money. I almost didn’t get my coffee either, but seeing as I had already had such a horrible morning and knew I would need the fortification to deal with my coworkers scrounged up enough change to get my caffeine fix. And no, I can’t blame this morning on cancer or chemo or fate, just blondeness, I guess.

But it was hard to be on chemo and work and deal with the forgetfulness. Mostly because I wasn’t entirely sure if it was really me or my colleagues or my boss; sometimes, it was like they were gas-lighting me. “Oh, I definitely sent that to you,” they’d say after a third request for a document. “You did?” I would ask puzzled. “I’m telling you. I sent that on the 3rd of November, I mean, I even wrote it down on this piece of paper. I can fax it to you. The piece of paper with the date I mean. Are you sure you didn’t lose it? Or misplace it?” Considering that my desk was piled with paper and I had the recent tendency to misplace and lose things, I couldn’t say with certainty if I had done that or not. I would mumble an apology and ask for it to be resent. And then my boss would recount conversations that I didn’t remember having. “I told you that I want it in this type of font and size.” Again, I would say “You did?” He would bark at me in the affirmative and I would be left wondering why I wasn’t walking around with a tape recorder so that I could stop embarrassing myself. Sometimes I really did misplace the papers. But just as often, they were never sent. And in a discussion with a friend later on she confided something about my supervisor to me. “He changes his mind all the time and then tells you that you weren’t listening or you didn’t hear him or whatever. He kind of gets a kick out of doing that to people.”

I’m taking a break from writing about cancer to describe the supreme idiocy of some people that populate an office. These are the people that constantly complain that the copier is broken and when they walk away they leave a trail of staples and paper clips to get into the tiny parts of the machine. But besides that, I have to go over to the copier to make ONE copy today. Just one. In doing so, I notice that there is an error. It tells me to open tray one. In tray one, there are two stacks of paper. Grimacing, I take out the right stack. Why? Because under the pieces of paper it says in huge, purple marker: DO NOT PUT PAPER IN THIS TRAY. I just…no. I have no words for that.

The thing about experiencing a major life event is that people will inevitably disappoint you. And at the same time, people will surprise you. For instance, before I knew what was really going on, my friend S and I were hanging out. I spoke with her the night before my biopsy. I called her when I got the news, got her machine and told her to call me back. She didn’t. Three weeks went by, and I called her once or twice more and didn’t receive a return phone call. Finally, on my birthday, I wrote her an email asking if everything was okay with her. The response I received was one I would have never anticipated. It would seem that my cancer was a bit much for her to handle. At the current time, her life (mainly her work) was too overwhelming for her and she didn’t feel that she could be there for me. I was an inconvenience, really. However, when I was better she’d love to get together for coffee or a movie. I kid you not. Someday I might have to reproduce the whole email here. But to her credit at least she was honest about it. At least she told me right at the beginning, “Hey, I know you’re under the impression that we’ve been pretty good friends for a couple of years, but that’s not the reality. And I have to save all my “being there” time for people who I consider important. So don’t count on me. Kay?” I didn’t have any expectations after that. But the people who I relayed the story to would be all indignant and angry and “who does she think she is!” and then they turned around and did something similar, that really hurt. These were people whom I had been there for during their difficult times. People whom I counted on, really and truly, as my friends, all of the sudden weren’t there. They were too busy with their boyfriends/fiances, with work, with taking a test, or anything else in life, to even stop by. Or on a far lower commitment level, to even call. There were some who I called out on this. And when I did, the answer I mostly got was that they just could not fathom that I was sick. They did not want to deal with it. They wanted to believe that everything was fine. When they did see me, I looked okay. When they talked to me, we didn’t even talk about cancer. So, they figured it wasn’t that serious. And then there were others who simply didn’t call because they were sure I didn’t want to hear about their trivial problems when I had such big issues to deal with.

So I wound up in a unique situation. I didn’t want people to treat me like a special case. I was all for boyfriend problems or crazy coworker stories. I wanted to feel as normal as possible. I didn’t want every conversation to be a philosophical debate about life and death. But at the same time, I needed my friends to acknowledge what I was going through. I needed them to realize that it wasn’t a bad cold (which if I did get, would put me in the hospital). I needed them to understand that I was very sick and that I needed them. Again while trying to convince myself that I wasn’t all that sick. Some people came around. Others, I’ve pretty much cut out of my life. I can forgive them for their selfishness but I just can’t care enough to want them as my friend.

Which leads me to the pleasant surprises. Friends that I hadn’t kept all that much in touch with became great parts of my life again. They constantly called or came by with goodies. They would sit and watch a movie with me when I couldn’t leave the couch. They would offer to come to chemo with me. I had a friend from work, who was truly amazing. It’s funny, because a lot of people believe that it’s the grand gestures that matter most. But he would call me at home and give me the office gossip. Or because I couldn’t share food, would stop by the store on the way to work and bring me a personal container of milk and a box of cereal. And just those little things mattered so much. I had other friends who sent weekly cards, which were really cute. My best friend from Boston came down to stay for several days. When I was in the hospital with pneumonia my friend from Pittsburgh stayed with me for the full eight hour time of visiting hours. My friend from San Francisco flew in and brought with her some Lush products (which I promise I will dedicate much more time to later). My friends from London also came in. My brother and his friends were constantly bringing me scarves. My aunt would send care packages almost every other week with home-baked goodies and the entire Bath & Body Works line. My best friend since I was little was at my apt. every weekend. When I first got sick, she came and did my nails. She bought a hat I had been coveting. She cleaned my apt. when I was too weak to do so.

But out of everyone, I have to say it was my mother was the most amazing person. She read every book, came to every appointment, researched websites. She let me get angry, she let me be sad, she came with me to the mall and bought me ridiculous perfume and sat with me at chemo and watched movies. She stayed with me at night when I was so scared that I wouldn’t wake up to see the sun. She made me smoothies. She supported me in every decision I made. She told me when I was being rude. And one day I asked her how she could always be so good through this whole thing and she gave me the greatest compliment ever. She said to me, “I get my strength from you. You are fighting this and you are usually so positive and believe me I wouldn’t be handling this as well if it wasn’t for you.” And I say this and really mean this. By having such wonderful parents (although yes, my dad did cry a lot) I was very lucky in an unlucky situation.

After three rounds of chemo, where my arms and hands were sore from all the needle sticks, my doctor persuaded me to have a port put in. She, as well as the other nurses, assured me of the following: that it would be under the skin; I wouldn’t even notice it was there; and that it would make chemo a lot easier. The first and last thing was true; the middle one—one big lie. Yes, it was under the skin, unlike the ones that have tubes coming out of your chest. And yes, it made chemo a lot easier because they didn’t have to access any veins and I could walk around while attached to a huge pole with bags of chemicals. But the “I wouldn’t even notice it” part. Come on, like I’m not going to notice that there’s this huge metal thing in my chest. Under two big scars. Right. For the longest time I was worried I was going to set off metal detectors. I had no idea how I would explain that one: “Um, all my jewelry, keys and belts are in the tray and I’ve now taken off my shoes and hat and everything but see, the reason I’m setting this thing off is that I have this round disc thing in my chest, hooked up to a major vein and I’m pretty sure that’s what’s doing this. Oh, you want me to show you? Take off my shirt? In the middle of the airport? Am I being Punk’d? Cause I really do not like Ashton Kutcher at all. Stupid trucker hat trend. Oh I’m sorry did I just go off on a tangent?” Happily, it does not set off the airport detectors. Now, come to think of it, I don’t know if that’s a good thing or a bad thing. Anyway, the surgery was short. I hate surgery. I hate all those people in one room who are inevitably going to see you naked on a metal table and they’re trying to talk to you and make you feel more comfortable. And I’m like, no you’re all going to see my breasts pretty soon and not in a sexy way, so stop talking to me. And then to make matters worse, my surgeon tells my mother in the waiting room, “Well your daughter has a small frame, but a really big chest, so it was a little difficult. And I know that she’d probably want to wear a bathing suit, so I put it as far down as I could, but man, it was well,…” To my mother. In the waiting room. With other people around. Who were listening. She relayed this entire conversation to me later when I was on pain killers so that news went down much easier. Otherwise, I think that I would’ve freaked out a bit. I imagined the conversation that they were having in the operating room, “wow look at those! What the hell are we going to do?” And I’m sure it’s much worse than whatever I was imagining and should be happy that he didn’t say “Well, we gave her a reduction so now she can both have the port and wear those shirts that only B cups and lower can wear without looking like hookers. I’m sure she’ll be happier. Plus, it’ll be easier to find a bra!” God. This wouldn’t be the first (or last) time that cancer took a shot at my dignity. I remember when I asked my doctor the question that I’m sure lots of young people at least think, even if they’re too embarrassed to ask. “When will I be able to date, or you know, kiss someone again.” Her answer? “But you don’t have a boyfriend.” I said, “No, no one at this time.” “So why are you caring about kissing someone?” I was thinking, well for the future or in case some ex-boyfriend who I don’t despise takes some pity on me and wants to make out. Seriously, it was just a question. I wanted to make sure I wasn’t headed for some asexual existence. She continued, “As long as these people aren’t sick, you can kiss whoever you want. But just don’t go having sex with random people that you pick up of the street.” Yeah, because that’s always been my MO. Especially now that I look and feel ultra-sexy. The hell? She continued to lecture me on safe sex and I was suddenly transported back to high school, when one of the nuns cornered me in the hallway. We had a sex-ed quiz and I had done the big Taboo of answering the question, “What are the forms of birth control” with actual answers of condoms, the pill, diaphragms, etc. Apparently, she said to me, I hadn’t done my homework and I was ignorant. The answer, according to the Catholic Church, is Abstinence. That is the only form of birth control. What was I thinking? She saw me at the play rehearsals laughing and joking with boys. I was too boisterous for my own good. I swear these were the words she used. Because I knew that there were other forms of birth control. But my experiences with Catholic High School are a whole other thing. Anyway, I let my doctor finish her speech, and laughingly relayed the story to the nurse later on. She said to me very seriously, “Well, we all have needs.” Not wanting this discussion to go any further, I smiled and said, “Oh, I really need some water. Thanks.”

I know i write alot. I just have so much that I'm trying to catch up that I'm putting too much down at once. Chemo lasted three months. Every other week. I worked as much as I could. I cut off my hair as short as I could stand it and then would pull it out and watch it clump in my hands and then fall to the floor. One time, I was sitting on the porch and was absent-mindedly (sic?) pulling my hair out. When I looked at the grass, the mass I had created looked like a tumbleweed. It was so gross. Whatever hair was left was really blonde and I started to look like a little old man with a combover. I became an expert at scarves and hats. We bought a crazy expensive wig. I never wore it once. Mostly because the fall was so wet and windy. The last thing I needed was to be chasing my hair down the block. Cause that'd be cute. And not at all embarrassing. I thought that the hair thing would be the worst. I had really long hair, and I loved my hair. I never had to fight with it and was one of those people who hardly ever had a bad hair day. And then it was gone. But it wasn't as bad as I thought. I think because I had hyped it up so much in my mind. And it never all fully fell out. I was left with this white blonde baby wisps that would stick out from my scarves or hats, giving the appearance of hair. I hated seeing myself in the mirror bald, but I could deal with it.

So, I had Non-Hodgkin Lymphoma, Diffuse Large B-Cell, Stage 2B. The odd thing was, about being diagnosed, that was all these seemingly unrelated things were really part of my illness. I’d been sweating constantly during the day. Apparently, you’re supposed to get night-sweats, but I was lucky enough to be going to work each day, and showing up soaked. I tried different deodorants and told my mother, “I really need to see a dermatologist or endocrinologist”. It was embarrassing. I also had become really itchy, particularly in my legs and arms. I thought that since it was the summer I’d come down with a bad case of dry skin, so was buying tons of lotions and seeing if they would work. I bought new sheets, praying that I didn’t have bed mites (cause that would have just been gross). I was constantly sleeping. I thought I was depressed. My mood was like a pendulum. My best friend started saying it was like dealing with Jekyll and Hyde; he had no idea what would set me off. And if I didn’t eat—it was horrible. So the good thing about being diagnosed was that I realized: I did not have some freakish sweating problem (which being a vain woman I was happy to know); that I did not have dry skin or bed mites (however the 20 some odd bottles of lotions varying from Suave to Clarins still stand testament to the fact that I spent way too much $$$. And now I have about fifteen sets of sheets.); that I wasn’t depressed and that I wasn’t going to be one of those woman who fly off the handle for any or no reason. Ofcourse this whole thing gave me a whole new set of problems to deal with but at least the things that had been bothering me for months seemed to make sense.

I went to work after my diagnosis. I didn’t tell anyone, except for my closest coworker and my boss, for at least a week. I didn’t want to become “that girl with cancer”. I didn’t want the pity looks to start or the tiptoeing around me. I already got them whenever I went into the treatment center. I’d have these people who literally looked close to death, staring at me with such sadness because I was so young. And I hated it. I hated being sick more than anything. I hated having this thing that I felt other people would define me by. I was no longer me; I was a disease. I wanted to keep working because I felt that if I could keep some sort of normalcy I’d be able to make it through. My doctor kept asking if I was sure; chemo was going to take a lot out of me, and even though the shortness of breath and the other symptoms would go away, I would have to get used to the fact that I would experience fatigue like nothing I’d ever experienced before. I didn’t care. So there I was at work, and I felt like a lump had started in my throat. I was having trouble swallowing. I went into the bathroom and saw that my neck and chest had gotten really puffy. My father had been picking me up early and driving me back to my apartment but he wasn’t due to get me for another two hours. I called my mother, a nurse, and told her what was going on. She hung up and called me back two minutes later. “Your father is coming to get you now and he’s taking you right to the hospital. Do no panic. Everything will be fine.” A half an hour later my father was downstairs, and I was in the car, crossing the Brooklyn Bridge on my way, for what felt like the hundreth time in a week to the hospital. “Do you know why you have to go?” my father asked. “No, I think it’s for some sort of checkup thing. I don’t know. I’m really puffy.” I answered. He wouldn’t look at me the rest of the way to the hospital. When I got there, my mother was waiting and helped me walk inside. They ushered me in, and the doctor (Dr. Mary) sat me on the table. I had to put on one of those gowns that I had come to hate and she went to touch my skin. It hurt so bad when any amount of pressure was applied. I kept flinching. My breath had become ragged. She stood there and looked me in the eyes. “You have developed Vena Cava syndrome. I can give you steroids to stop the swelling. But I really think your choices are this: start chemotherapy today or you might die.” That was a choice? Start chemo…or die? I was completely unprepared to start chemo. I was supposed to see another doctor to get a second opinion. Blinking back tears, I stated. “Well, then that means we’re starting chemo I guess.”

I was brought into the back room, the treatment room. The chairs were all in a circle. Big, comfortable recliners. There were T.V.s in every corner, and I was definitely going to be sitting next to one of those. Everyone was running around frantic, putting in the orders for my chemo. I went into the bathroom to collect myself, using a barred cell phone and called my best friend. “Where are you?” He asked. “Chemo.” “What? What happened? Are you okay?” I started crying and saying, “I don’t know. I have something that they haven’t quite explained to me yet, and I have to start today.” “Okay. Well, it’s earlier than you thought, but look at it this way: there’s no anticipation. You just have to do it. You don’t have to worry about it all day before you go, and it’s going to save your life. You’ll be fine.” I could hear light knocking on the door and knew I had to go. I collected myself and told him I’d call him tomorrow. When I opened the door, there were three nurses and my mother standing there. “Ready?” asked a nurse named Kathy and she led me to the seat that I had claimed as mine. I nodded and scanned the room. “Where’s Dad?” Everyone exchanged looks. “Your father is in a room in the back. He’s very upset.” Apparently, my poor father had been in the waiting room the entire time this was going on. Then my mother had to go out and explain to him what had happened. He just didn’t understand. I had seemed fine. And then, my father, the huge firefighter who ran into burning buildings to save others and risked death for a job, collapsed into himself. The weight of what was happening just seemed to do him in. In an instant, three social workers descended on him and they took him into a private room. There he just cried and spoke of his confusion, and apparently had the whole room in tears near the end. I wasn’t there and heard about it later. I think that if I was in that chair, listening to the story of my father feeling so lost and confused, I would have been a mess too. It was better that I heard of it later, so that I could process it in its own moment and not have too much going on at one time.

I was thankful, for once, that I had good veins. They inserted the line, which was painful, even though it was with a butterfly needle. Why do nurses always say, “Now this won’t hurt?” and then seem surprised when you flinch that it’s just a bit painful? I hate that. I was given this huge packet of information, and told step by step the drugs I was getting for my CHOP. Cytoxin, Adreomyacin (sic), Vincristine and Prednasone (the drug I would come to hate). I would get Zofran and Decadron first. Then I would get the other chemo drugs, with the exception of Prednasone, which I would take PO for five days, 100 mg a day. And normally I would get Rituxin, a relatively new drug, but since they have to gauge how you handle that I wouldn’t be getting it until Friday. So all in all, a regular chemo day for me would be about five hours. This was when they first brought up the subject of a port. It was a small, metal thing inserted in a main line in your chest and you could get your chemo through there. They could also draw blood from it. I couldn’t think about that right then. For now, the veins were fine. So I had my first chemo, basically without incident. I was craving McDonald’s, so my father ran out to get me a big mac and fries. I basically inhaled them. We got home and I felt fine. I was like, I can do this. No problem. Chemo was easy; I had to go back the next day for hydration so figured I’d get to sleep. Not so. Within an hour of taking the prednisone, which has a really awful taste, I threw up all my McDonald’s. I was up the whole night peeing because I get the drugs out of my system. I finally fell asleep at 7:30 a.m. At 9:30 my mother woke me up to go the hospital for our 10 a.m. appointment. I was very, very unhappy. I also had to take the Prednasone again. I stared at the little pill which had already come to despise, and asked for some YooHoo and a cough drop. It would seem that taking Prednasone with YooHoo made it bearable. I didn’t even taste it. And the cough drop ensured that no lingering taste would make it either. Miserable, sick and tired, we put me in the car and headed to the center.

I was diagnosed with non-hodgkins lymphoma in september. i was sitting in my office at work, with this horrendous cough, and it had gotten so bad that my coworkers had started popping their heads into my office telling me that they're starting a petition to get me to go home and get to the doctor. i was stupid; not wanting to leave work early just to find out i had a really bad cold. And i might not have, had my mother not gotten my father to call me crying basically begging me to go to the doctor and have a chest x-ray. I did not like hearing my father cry. I'm Catholic and Irish so guilt works wonders. the mental image of my father on the phone bawling his eyes out telling me that my grandfather would still be alive had he only listened to my mother gave me enough incentive to head out the door and sit in my doctor's office. I should've known something was up when it took me a half an hour to walk two blocks. I simply couldn't breathe. So, there I was in his office, coughing so that people were moving several seats away from me and then I was called in. He listened to my chest and heart and didn't say anything. I pointed out the small lump on the side of my neck, "Can you tell me what that is? I think I knocked into something in my sleep." He pressed it and asked me if it hurt. I said no. The look of panic crossed his face and I knew, right then, that something bad was happening. he sent me to another place to get a chest x-ray. Five blocks away. I just said how hard it was to walk two right? Okay, five, was no picnic and I was in a race against closing time. so, the girl who can barely breathe, rushes her way to the "imaging" center. I get there, finally, completley winded. I hand her the form to get the chest x-ray and she goes "okay, that's ten bucks". i go to hand her my debit card, and she says "um, no. we don't take debit. cash or check." remembering that I had treated myself to lunch that day, and never carry my checkbook, i stared at her and my sad three dollar bills. "can you bill me?" No, was the reply. for a lousy ten bucks? anyway, i had to walk another three blocks to the ATM and the girl's parting words to me were "hurry up, we're closing soon and you have a stat x-ray." So, finally after the $$$ was taken care of, I took the first of many chest x-rays. Then I had to carry the films back to the doctor's office and as I got there a fax was coming through and he was reading the pages with a worried look on his face. He hurried me back into the examing room and left me in there for twenty minutes. I really thought I had pneumonia. He comes back in and asks me is there anyone I'd like to call. uh, no. He then puts his hands on my shoulders, stares me straight in the eyes and says "you have one of five things. first, it could be sarchoidosis (sic). or, lymphoma. the other three i haven't even thought about yet." i stared at him and started to tear up. "no, you have to be with me here. you have to stay strong." so i nodded, took my films, went outside and walked home. the next few days I got sicker and sicker. it was as if my body now knew that the cancer had been identified so it could continue it's downward spiral. I went for CT Scans (drinking that stuff is disgusting) and finally a biopsy. I had the biopsy on a weds. by friday I knew i had non-hodgkins lymphoma. They had done a frozen section on that weds to find out what exactly it was, and so, I knew I had cancer. I never thought I'd be rooting for a specific type though (hodgkins). by the next weds i had started chemo. everything kept happening so fast, and all i kept thinking was, but my birthday is soon. i'm going to be 24. something isn't right.