Surviving Non-Hodgkins Lymphoma--at 25

2005-08-18T09:35:00.000-07:00

Edited: There is one more post after this; it got switched with the July 28th post.

The past two years have proven to be quite a battle. On the fronts that I haven’t even really expected. When we all see movies about cancer, it’s the chemo and the radiation that do the character in. Or what they triumph over. I don’t know—to me that was the easy part. There were medications to combat the nausea. Creams to help the dry skin. It was finite—six rounds, here’s what you’re getting and on this day it would be over. Scan shows your clear, we’re done treating you.

It’s the after. It’s the “what now?” part that I struggle with. I bridge two worlds—I feel like I carry the pain and the fear of having gone through the cancer with the reality that I’m not in a chemo chair but a work chair and the only radiation I’m getting is from my cell phone or computer. I don’t have cancer. The only vestiges of it that I have to deal with are the scars on my chest and my neck and the six month CT Scans.

My doctor told me that getting through cancer is like experiencing a loss, as real as losing a sibling. And I thought of the way that we often handle the death of a loved one. We hold on to them and bring them to the forefront as much as possible because we simply can’t, or won’t, forget. You know that life has to go on, but how can you honor and remember while still moving forward? How do you get to the next step when you’re still stuck in some of the pain?

I don’t know if there are any answers. I think we first have to acknowledge that any grieving process takes months, years, to heal through. There are some things we get good at, some things we find ourselves always working on, and some stuff we’ve decided we simply can’t change. I have spent the past year thinking I’m somehow damaged in ways that can’t be repaired. I’ve been so critical on myself—I should look like this, I should feel like this, I should be doing this—because of this unrealistic notion that there is no room for imperfection. That in order to erase the cancer, I have to prove that I’m more than what I was. But I’m not. I’m no more damaged than anyone else. I’ve been playing into the very things that I’ve asked people not to do.

So, I think that it’s time that I stop this phase of my life. The past few weeks have been so much upheaval for me and in a lot of good ways. I’ve been forced to look at the person I’ve become and why do I keep trying to get back to something that probably wasn’t even there in the first place. And stop focusing on all that I’ve lost and look at what I’ve been able to gain. I’m not going to be making any more entries for now. I’m not cured. I’m not 100% fixed. I’m not anywhere near where I hope that someday I will be. But I think in dwelling so much on what is wrong with me, I’m damaging a relationship that I really treasure. And if anything, I need to mend my heart and move on, before I lose something else. And the only way to do that is focus on the now and who I am today, and be positive about all that I’ve gotten through and all that there is out there. The possibility of more.

Thanks for reading. I hope that you find something useful in the other entries, for other young cancer survivors or someone experiencing the illness, or friends, or just life in general.

2005-07-28T11:13:00.000-07:00

This is a post that I want to dedicate to my friends and family who have seen me through the ups and downs of the past year. Who have shown me that there is so much more out there and whose love for me has really made me who I am today.

Love is a funny thing. We hear the word and depending on who we are, we associate a million different things with it. My doctor was talking about it with me. She was discussing how crucial it was for cancer patients and their families. How sometimes just walking around the ward can make people feel better. Why sites like ChemoAngels are so successful; it makes people feel connected and ultimately cared about. I mean, love is so many things. And everyone has a different definition for it—some liken it to a flutter in the chest, a flip-flop in the stomach, romance, friendship, family, trust, loyalty, caring, the list can go on and on.

Our life experiences color the word too. Some of us take love in the form of money; others will have the life beaten out of them because that’s what they were taught love is. Some of us hide from it; some of us embrace it. Some of us run from it, while others of us constantly find ourselves chasing after it. It’s elusive, it’s intangible and can be as healing as it is destructive.

But for me, and I believe like so many of us, love is friendship. It’s comfort. It’s caring. Love isn’t some mystical and magical movement in your heart. It’s the feeling that you get when you know that someone means a lot to you. When I was sick, I remember feeling the need to constantly tell everyone around me how I felt about them. And I was lucky that I was surrounded by people who would love me back; I can't imagine how lonely someone would feel if all they had was themselves to rely on. And I've met people through my work with the Lymphoma society that did feel all alone and unloved and confused and unlucky. And I kept thinking, "how unfair is that?"

Because this whole experience taught me a lot about life and love and friendship. It changes how you look at the people in your life that you care about. Who you let in. It changes how much of yourself you’re willing to give to any one person; I've been accused of giving too much to friends who don't seem to give much back. But it also gives you a certain freedom in not keeping around people you only have lukewarm feelings for. And you just want to constantly surround yourself with love. Because it’s what gives you the reason to fight the disease that has infected your body and to make sure that it doesn’t come back. When it seems like your world is just going to be surrounded by so much darkness, when your body fails you, and all your left with is hope, you truly believe in the fact that love—the way your mom holds your hand, the way your brother sits at the end of your bed, how your friend brings you over a ton of movies, and your dad just sits in a chair and looks at you—will make it all better.

I could’ve been very bitter after I got better. The person I had once been in love with had skipped out. Best friends since college, whose wedding I had read in just months earlier, had bailed out. I had no hair, scars on my chest, pounds added on from steroids and a complete lack of direction. On one hand, I might only have a few years left. On the other, I may have had just as long a lifetime as anyone else.

They say that having cancer is a grieving process. Most of us suffer something akin to a broken heart or losing a sibling. Imagine, at 23, you feel that you have your entire life ahead of you. Then at 25, feeling that you’re not sure how much life you have left in you.

So, first you shut yourself off. You look through old pictures, crying about the past, the memories, thinking, “If I could just recapture that feeling, I’ll be okay.” But then you realize that isn’t why you were given a second chance. So, you start to go out again. Remember what it’s like to smile, to laugh, to dance, to have a good time. All that stuff you were in that hospital bed fighting for comes rushing back. You start to remember how good it feels to be open to possibilities.
But see, your heart can still be broken from being sick. You feel betrayed by your body, by God, by things that are out of your control. You cry for no reason. You don’t trust anyone, including yourself.

We forget that we tell our parents, our siblings and even our friends we love them all the time--because we do. They’ve become such a fabric of our being that we just simply love them. They’re a part of us.

But being able to be to love, means being able to be vulnerable. If you’re not willing to be vulnerable, to be open, you’ll always be scared. You’ll always be looking for something that isn’t there. If you’re going to embrace the good in life, the good in the people that care for you, you must first let go of all your anger, all your hurt, all your confusion and all your pain. Let go of your expectations, your comparisons, and your conviction that you know how it should be. I know that life will work itself out and show you that there are things that will be surprising. No one person can fix someone else’s broken heart—but they can make you see the possibility of more. And if you’re willing to take the time, to let yourself heal from this sickness, to accept that right now there are no real answers, then you have a shot. Because there are some things in life that are very rare—and a friend, a good friend, a great friend, a friend who loves you for all that you are and all that you can be—is one of those things.

2005-07-25T06:46:00.000-07:00

I think that experience is our greatest teacher--and our worst enemy. It gives us the tools survive but at the same time can make us jaded and wary; cynical and distrustful. It shapes who we are in ways we're sometimes not even aware of.

Because of my experience, I know that I have trouble with trust and having faith. Fear--of what I can't control, of being vulnerable, of opening my heart--rules who I am these days. I find myself constantly uneasy with just BEING. Everything has to have a plan, a purpose. I need to know EVERYTHING & ask a million questions instead of just letting the answers make themselves known. I subconciously test people--pushing them to the point where they are looking at me and saying, "Is this really even worth it?" Once something takes on meaning to me--I feel the need to question it. Confidence becomes uncertaintly because now it has weight and value and the potential of loss is really...well, there you go.

But I know that these thinsg aren't who I am. They're simply my experiences getting in the way. Shielding me from getting hurt but at the same time blocking me from being 100% happy. We guard our hearts for lots of reasons--but ultimately we are all terrified of getting hurt. Because when we didn't know any better we handed all that innocence and trust over and said, "this is important, don't break it." But we're all only human and for one reaon or another we find our hearts, our innocence, and our trust shattered into a million pieces. And whoever wants to go through that again? If you're me--you shut yourself down, away, find something wrong with every guy you meet, swear to your friends that love is a myth, a joke. And then three years later, you realize how much has gone by. How by not taking the chance on being disappointed, you've accepted just being empty. Using a broken heart as an excuse. And it never heals because you've forgotten what it means to connect. Experience has kept you from experiencing anything--pain, misery and ultimately happiness too.

I may have a ton of hang-ups. A relationship with me is uncovering all those land mines, those things that I've been very good at forgetting about and running away from. Opening up old wounds and healing them--but ofcourse first it's got to sting a little bit. And not hiding behind my illness anymore. I believe that I have the capacity somewhere to let it all go and start over. To not bring all my disappointments with me. To allow myself to be vulnerable without being insecure. To trust the good stuff. To stop questioning everything because I'm so scared that if I've not thought of every scenario, every angle, then I won't be prepared. I need to appreciate the unexpected and be open to all the possibilities. Because if experience has taught me anything--I deserve to be happy.

2005-07-07T12:31:00.000-07:00

Trust has to be the most loaded word in the English dictionary. Way so more than love. Probably because love is sometimes contingent on trust and if you love someone and they break your trust then that is probably the most devastating thing.

Anyway, the thing about having cancer, going through cancer, surviving cancer is that you have to have so much trust: in your doctor, in the research, in the medicines, in yourself and ultimately in some unknown force that you are hoping is watching out for you. The lack of control that cancer bestows on us leaves us vulnerable to so many outside forces—chemo makes it so that even the tiniest cold germ can have us taking up space in the ICU, sucking on oxygen. You have to believe that the doctors know what they’re talking about, that the researchers have stumbled upon the right combination of drugs, and that the medicines won’t kill you when they’re trying to make you better. That was the hardest part for me. I couldn’t look at the statistics, I couldn’t listen to the success stories—stats can be altered and truthfully for every success story is a sadder story of loss. So, I’d have to go on blind faith and the notion that whatever will be will be.

So one would think after becoming completely dependent on forces outside my control, that I would have far less trust issues. After all, it worked! But I don’t. I constantly question the good news, wondering why I should make it through and be okay; the unfairness of it all is something that I dwell on. I was never like, “Why me?” when I got sick, but I’m completely like, “Why me?” now that I’m okay. I can’t trust the present. I’m petrified to let my guard down and be that vulnerable again. When your whole world has been shattered and rebuilt, you tend to put up better fences this time around. But it makes you a hard person to have a relationship with. The constant doubt, the constant questions, the insecurity, the fear, the tears, the confusion—I can only imagine that it would become too much. Or maybe that’s one of the walls. Make it hard enough and then there’s your excuse and you get to say, “see I knew you couldn’t handle it.” I don’t know. Some of it is probably real and some of it is probably a defense mechanism.

2005-06-15T13:59:00.000-07:00

Saying the right thing. It’s so much harder than I thought it would be. And I’ve learned I have very little patience for people who say the completely wrong thing.

For instance, I was talking with my mother today. A friend of mine may have a serious condition and I was a little upset about it. She goes, “Why did she even tell you if she wasn’t sure what it was yet. Why didn’t she just wait?” And I’m all like, what the hell does that mean? And she proceeded to tell me that ofcourse, she would wait until she was certain before unloading that on “someone like me”. Which put me through the roof. And I was like, “What the hell does that mean? Because I would think that if you had a friend who had been through a serious illness, that that would be the first person that you turned to because they would understand. So, now people are supposed to avoid telling me unpleasant news because at one point in time I was sick and they should only tell me things if they’re certain?”

She had no reply and she just couldn’t answer, just kept going on and on and about how what this person did (by telling me, mind you) was inconsiderate and wrong and blah blah blah and I had to say to her, “You know what? You’re making this worse. I have to go.”

I’m sorry, I love my mother, but I’m going to disagree with her here. But at the same time, I don’t know if I should take her advice. So, when I feel sick or if the doctor tells me, “I’m going to do some tests” I should just not tell anyone? Just kind of go through that alone? Wait and see what comes down the pike? Keep it all in? Be scared and nervous and just say, “Well, I mean I’m a nervous wreck and talking about this with someone might help but since I’m not 100% sure what’s going on, I’m going to keep it to myself”. Which I’ve been accused of doing. And told not to do. I don’t know, I don’t like to be thought of as fragile, as not being able to handle certain things. Not true!

2005-06-14T11:10:00.000-07:00

I’m a very superstitious person. I mean, sadly so. Recently, I haven’t been feeling all that great, so I was staying away from putting anything down on paper. My fear was, I put it out there, completely out there for me to read again and again, and I might make all my fears real. Saying something makes it true I suppose in my warped world.

But the good news is that what seems like it really just a little fatigue (probably from the heat) and allergies, really is not signs that my tumors are back. This time I was extremely nervous. I kept playing out all sorts of scenarios in my head. How to break it to my parents, what would I do with work, etc. I thought to myself—this is it. I have to do this. But being overdramatic has its benefits since it would seem that I was not only fine, but really fine, and I was able to spend a weekend without the threat of needing to get thrown back into that life that I happily left behind. I always feel guilty for feeling like it has come back, and then there are other people who have already gone through that moment, and I get to be like, “whew, worried for nothing.”

My anxiety hasn’t totally gone into remission though. Like right now, I still have butterflies in my stomach. Why? I’m not really sure. My friend says it’s because I refuse to let anything good happen to me. I’m always searching for the loophole, the way out, analyzing everything to death until I’ve come up with every scenario and have gone through the gamut of emotions so that I wind up tired and empty and totally don’t remember what the happy part felt like.

See happiness is so much more like trying to catch water. Whereas misery is much more visceral, much more lasting, and ofcourse, loves company. It’s not that I’m miserable; I’m just realistic but am a generally contented person. It’s the excitement piece that I’m not so good at. I remember my friend Alessandra used to say every time she started dating a new guy, “Hope for the best but expect the worst.” God, I remember that since the 9th grade. Anyway, I cant’ tell you how many times I’ve heard that since then in almost every capacity. Maybe that’s what we train ourselves to do. Hope for happiness but expect to be let down. Then if it works out you’re pleasantly surprised; but still expecting it all to come crashing down around you. So, hmm, maybe that’s a really crappy philosophy.

I don’t know. Like, I get the all-clear and I’m already panicked about the December one. I think we all do things like that—for women waiting for your period to confirm that you’re not pregnant, only to spend another month waiting for it to come again because this month might be different. We’re always walking on eggshells. Waiting for something to happen that will upset the balance we’re trying to create. Life is compartmentalized, broken down into manageable units of time, either by months or weeks or milestones and events. We spend our time thinking of how what we do now will affect our future; and then if when we look back on what we did, if we wasted any time. There’s so much planning and Monday-morning quarterbacking, that I’ve forgotten how to live in the moment. Like to enjoy this exact moment in time, to think that this is perfect for right now—and if I wind up sick in December it takes nothing away from those two years that I was okay.

2005-05-25T04:32:00.000-07:00

Sometimes people surprise you.

After dealing with the extremely rude office staff yesterday, I emailed my doctor. I didn't out and out say what a horror the woman was, but I said, "unfriendly and unhelpful". Oh well. Needless to say, he writes back, apologizes for them, takes full responsibility and will be having a chat with them later on. Nice. :-)

On a separate topic--yesterday was a bit rough for me. Besides dealing with idiot office staff, I occasionally have to deal with idiot co-workers. Let me say this: I love my job, I love my boss and I love about 80 percent of the people I work with. It's the 20 that is driving me up a wall these days. Some people are neverhappy, they love to complain, they think it's their job to give everyone "feedback" (which is just cattiness disgused as criticism to help you "improve") on every little thing that they do and it's just so frustrating.

A lot of people work with an agenda. I don't. I may talk about work an awful lot, but I certainly don't spend my day plotting and thinking about "why are they ahead of me"? Because seriously--I DON'T CARE. I go there to do work, do a good job, the intermitent "good work!" is great, but I'm not gunning for anyone's job, or to be anyone's boss or anything. It's just not where my energies are. I know that I'm just trying to make the most of the time I have on the planet. But other people want to spend their time trying to figure out how to bring you down and then I have to waste my energy, my time, my thoughts, my everything, to deal with this. Then I get stressed. And then I get upset that I'm stressed. And then, all anyone sees is not my strength, not my "I can do this" attitude, they see my tears, my frustration, my mini-breakdown, cause man, everyone has their breaking points and sometimes I'm just not up to hanlde the stress, because there is such a thing as too much.

My boss says that stress is a choice. I believe her--but it's also hard to escape your conditioning. I used to not pay too much credence to "feedback". Then I was told I needed to care more about what other people had to say, listen, not ignore it and use it. So I did that. Now, I'm back to the "filter" stage. But if I'm filtering I've still got to listen to that crap! And I'm telling you, when it's time for you six-month scan or your friends have been sick or whatever, listening to the petty, small things makes me want to lose it. Which I guess is just one more thing I've got to work on.

2005-05-24T08:46:00.000-07:00

Ugh.

Okay, reading the paper this morning and it seems like it’s always a back and forth, “If you believe in blah blah blah” vote Republican or Democrat. Whatever. I don’t care about your party affiliation but what ever happened to being NICE to people. Seriously, does one party get the stake on that? Is one better at being decent and NICE to people? I honestly don’t think so. I don’t walk down the street and think, well that person looks happy so-they must be a heathen. It’s so frustrating. Political views are one thing, but try being a person who is kind and courteous and who doesn’t scream at someone for disagreeing with you, who isn’t dismissive, who doesn’t make clucking noises when you feel “crowded” by someone one the train, or make fun of someone who has a disability or at least have enough self-awareness to realize that driving an SUV and making fun of all the “liberal eco-nuts” who recycle is complete hypocrisy when you crave sandy beaches and blue water because you need to get away from the dirty city. NATURE IS WHERE YOU GO TO VACATION! I mean, I’m not saying that driving and SUV or whatever makes you any less of a person but just because someone recycles or plants trees doesn’t make them crazy. So if you don’t want to be accused of not caring, don’t yell at someone for caring too much.

I call my doc’s office to get a referral for a CT Scan. My oncologists had decided a PET/CT wasn’t necessary and that a regular CT would be fine. The receptionist was so rude, I couldn’t believe it. I mean, out and out dismissive and condescending and had the nerve to say (I couldn’t make this up), “Can you please explain to me again WHY you’re calling me?” I don’t understand some people sometimes. I’m a heathen because I’m pro-choice but you’re a good person who thinks that telling someone that they’re not worth your time when they need to get checked for re-occurrence simply because you vote another way? That’s what this has come down to? “Guiding moral principles” are generally subjective—you’re no more evil just because you can’t say that you have blind faith in something if it’s simply not what you believe in but volunteer on weekends because you want to help those that you can have a conversation with. We’re all different and yet we fight so much to have people think the same way we do. It’s very frustrating. We teach kids to “celebrate diversity” but at the same time we lambaste it in the media. It’s terrible.

Here’s the truth: cancer is the universal equalizer. It can strike at any time, any place, any religion, any faith (cause they are not one in the same), any gender, any age, any race, any location on the globe, those who are good, those who are bad, pedophiles, pastors, moms, singletons, women who have had abortions, those who are opposed, recyclers, bicyclers, SUV drivers, blondes, brunettes, red-heads, blue eyes, brown eyes, green eyes, those who have lived charmed lives, those who have seen so much tragedy, couch potatoes, exercisers, vegetarians, meat-lovers, carb addicts, carb avengers, Democrats, Republicans, Libertarians, whatever, you’re not immune.

So maybe, just maybe, we can just all work on being nicer. Being more kind and caring. Not finding the differences as an excuse to be rude and say unkind things to each other. Because I’ll tell you this much—if you can save my life, I don’t care if you worship eggs or think that the President should have his face carved into a mountain. If you care enough to make me better, then I’m sure we can come to some sort of compromise.

2005-05-19T20:03:00.000-07:00

This week has been nuts. I mean, completely crazy. I was co-in-charge of running a conference for 180 people. Demanding people. But a good group none the less. Needless to say, major freakout last night. I was on the dance floor, and all of the sudden I was having some trouble breathing. And for the past week, I've been sweating during the day. So, if you've read the other posts, you can see where the freakout is coming from. I'm not saying I know what's happening or that its' even anything, but I'm so wiped right now. I'm scared. I have to go for my regular scans, and well, I'm not saying that it's anything and that any of this is even real. But well, maybe if I put it out there, I'd learn to stop freaking out.

2005-05-15T20:42:00.000-07:00

My friend from HS has been sending me emails. Not the personalized ones, but the forwards. the one today was "how well do you know so and so" and it had a bunch of questions. usually, I delete them, but i figured I'd answer these, cause what would it hurt.

But it's such a good concept--how well do you know a person. And what does that mean? Not just what their favorite color is but how they'd react, respond, relate, feel to certain topics, movies, television shows, events, etc. That I suppose is really knowing a person. And I don't know if I get that far with most of my relationships. I know that most people would know who I think is cute, and my favorite movie, but could they guess that I am outraged by the genocide on the African Continent. That I often feel helpless by not feeling like I can do enough to help people? That my life often feels incomplete for a variety of reasons: that I'm not doing enough with my talents, that the love of my life is far away and unattainable, that i spend my stressors on work events and not LIFE events?

That was always the hardest thing when faced with death for me: who really knows me? Have I had any time to make a difference? Do I just not say anything because I'm afraid of a confrontation and I am letting myself down? Am I afraid of risk, of chance, of fate, of LIFE because I'm afraid that once someone gets to know me, the real me, that they'll be disappointed? I don't know. I think we all struggle with that reality. That having someone know all about you--not just the trivia facts--is daunting because they're in your head, they're a part of you. And I don't know how many of us are truly ready to relinquish that much control to another person. I think that's why we hide, why we tell tales, and jokes, and avoid answering questions that speak to the things we're afraid to admit. I don't know. I know that when I'm out, I'm not thinking about my next CT scan. But it's there. It's in my heart. It's something that I wish someone just understood, instead of me having to say it. But if I don't voice it, if I don't make it real, how can I blame anyone for not understanding how hard it really is?

2005-04-24T20:06:00.000-07:00

Convictions. I think that they are the most important thing we have. They are what keeps us moving, going, living, breathing, interacting, finding meaning, finding hope, believing on a day to day basis.

Yet as important as they are, we're often told to silence them. Distrust them. I was at a party last night and someone made a racial remark. I choose my moments; I don't care if they make me unpopular. And that moment was mine to choose. I made my displeasure at that unknown. And the worst thing that this person could throw back at me? That I was a liberal. well, with a few explicatives in there it sounded harsh, but at the same time, it was a pathetic attempt to single me out and create a mob mentality around "get her, she's different." Am I? I don't think so. I don't need people to agree with me; but I ask them to respect my right to disagree with them. But, it occured to me that this segmenting off of people is something that seems to follow us all our lives. The stakes are higher when we're older. But this constnat need to brand people, to label them, seems to start in kindegarten and follow us straight through adulthood.

I'm distrustful of labels. Liberal is a label; and not something I would even call myself. Cancer survivor is a label; it seems to sound like I'm not living, but just outrunning cancer, hoping that I can survive it, as opposed to leave it behind. It implies something the minute you say it. But I have convictions. I believe in equality. I believe in affordable healthcare and social programs that might help end the cycle of poverty. I believe in education as an important investment. I believe in saving the environment. I believe in the freedom of choice--and not just choice in the politicized sense, but the power to choose in all aspects of your life. I believe that we are a far too litigious society. I believe that we no longer want to accept blame. I believe that everyone has the right to love. I believe in fiscal responsibility. I believe in giving back to society and knowing everyday how truly lucky I am and paying my wage back to the common good. I believe that having strong beliefs is the only reason I am here today. If I was apathetic, if I just went with the crowd, if I could not find strength to stand up to an idiot, how on earth was I to find strength to fight for my life? I find that everyday is an opportunity to be a better human being, and given the limited time that I may very well have, I'm not going to waste it. Some would say not to make waves, to let it go. And like I said, I choose my moments. Because if once again I feel my body slip away, I need to know that I always tried as hard as I could to be true to myself. Because we never know when the opportunities will just stop being there--and we're left with the legacy that those opportunities have created.

2005-04-17T00:26:00.000-07:00

I think that a lot of people have the mistaken impression of what strength is. I have a lot of friends who never ever discuss their feelings. Every time you ask them about it, they give you that Pollyanna b.s. that feels the need to spin everything in the most positive way OR they say nothing and cite their inability to talk about it.

Well, here's my take on strength. It takes a very confident and strong person to admit that they need to talk--to discuss their fears of dying, of how overwhelmed they are, how scared they are, how much they don't know, etc. Keeping it all to yourself does not make you strong--it means that no one can know you, no one can help you and you are making sure that you are going to crack under the pressure.

And also really think about why you are afraid of opening up. Is it because you have people in your life who can't just listen--but take every remark you make as an opportunity to give their opinion? Or every time you have a reaction you're surrounded by people who also give their feedback on how you reacted wrong or how they would react? Is it just hard to have an honest emotion because you're afraid of how you'll be judged?

I speak from a place of experience on this one. For some reason, I think a lot of us offer judgement without realizing it. I recently got a new car. Someone said to me, "Cute but I don't really like two doors." Automatically, I did not want to talk about the car with them anymore. That remark alone made me shut down. It was encased in a negative comment and a judgemental vibe. And it goes for a lot of things in life, "I know you feel like what's happening to you isn't fair, but you know, it's just life and sometimes you have to accept it." Again--it'll lead to complete shut down. Every time we make a choice (a doctor, a treatment, a hospital, a vacation) do we need commentary? Do we need to question, feel invalidated at every turn and then start leading to emotional shutdown that is definitely detrimental to our well-being?

Don't feel the need to look for the silver lining in EVERY FRIGGIN SITUATION. If you have a co-worker that sucks--they suck. Plain and simple. No need to constantly be thankful that you even have a job--particularly if this person regardless of your efforts winds up consistently ruining your day. You can be pissed, annoyed and irritated that this person is basically making your 45 hour week in an office a bit unbearable. Because the truth of the matter is, that sometimes these people are toxic and no matter how Zen-like you try to be, they can really make you tired, sick and affect your work. And it might be a situation you can't change--so I say, don't feel like you have to be thankful for the other things, complain about how much they suck to a friend who'll let you vent without making you feel bad about it. It'll be your first step into emotional freedom because you've found a safe place to let it all out. And yes, it's a fine line between constant complaining and discussing your frustration and I walk that fine line every day (and often step off of it) but it's better than putting it somewhere else. Because eventually you'll get to the place that you want to be.

If you are dealing with doctors who are rude and impolite and standoffish--DO NOT think that you have to say, "Well, they're doing a great job with my body" because your heart and your soul are part of that, and if they feel that they are above taking care of those two things, then you'll never feel free to be completley honest with them and you've effectively done yourself a major disservice.

2005-04-13T06:32:00.000-07:00

I'm in Florida for business. Besides the requisite, "ooh, Florida" from New Yorkers because we usually associate the locale with vacations (Disney World, beaches, Spring Break) I have to tell you that it's nicer down here because I don't feel as stressed. As tired. As worn out. I'm doing the same amount of work--and here is where my boss is located! But it's the atmosphere that's different too. There are "Relay for Life" signs all over the building. Not a single thing in the New York office but here, they're everywhere. It's so comforting. For those who don't know, Relay for Life is sponsored by the American Cancer Society and is an all-night event that people camp out and do stuff with. You can go to cancer.org to learn more about it (omg, I sounded like an ad. Not good).

I personally have never done the event. I was seriously considering it this year. I'm not very into those types of things. Not that I don't donate the money, but sometimes it's harder for me to be surrounded by so many reminders. And then I remember that it's also a community that needs to be reminded that it's not always hopeless.

But, I'm also one of the luckiest people when it comes to friends who get involved. Last year, our Team Goonies raised $2000 for Light the Night. My best friend Nikki did a MARATHON in Arizona--and not only did she honor me, she honored my friend Lindsey, a person she had never met. And in a few months, my Aunt Chris will be running as well, and baked LOADS of biscotti to raise the dollars. I'm always amazed and the love and support I get.

2005-04-11T19:16:00.000-07:00

Update on the crappy doctor.

Okay, so I go in to pick up a copy of my bloodwork (and I have something to say about that too. I won't forget) and she's there. Grr. Anyway, I'm waiting behind the door at the receptionist desk and here is the conversation I had the pleasure to witness:

Terri's Fave Doc: Let's get going! (claps hands) Hello Mary, happy Saturday!
Terri's Least Fave Doc: (groan)
Terri's Fave Doc: That doesn't sound like a very good Saturday response
Terri's Least Fave Doc: All I'm going to look at today are stupid canker sores, it's gorgeous out and my kids are home having fun without me and I have to be here, and I'm so done with work (noticing that I'm there and that the door is opened behind me leading out to the waiting room where a dozen patients are listening to what she's saying) But, um, not that I don't want to be here to help these lovely people (trails off)

Terri: You know, a lot of people work twelve hour days. Sometimes more.
Terri's Least Fave Doc: Yes, I know, I'm not saying that I work more than anyone else, it's just that.
Terri: Oh no, I'm not saying we can compare jobs. I mean, I put in about 65 hour work week--but no one's life is in my hands. (and I say Ciao! to the crew and head out leaving Least Fave Doc to try to come up with something to say).

Ha! And I couldn't have made up that exchange. Ahh, lovely. I hope the canker sores are contagious.

2005-04-11T18:59:00.000-07:00

There are a lot of things I still don't know. But I really wish people would give me credit on the few areas that I would say I have A LOT of experience in.

For instance, one of my doctor's called the other day, left a message and said to call her about my test results. I call back, the doctor's gone and the nurse was like, "I guess you can talk to her on Tuesday." This was Friday morning.

Here's the deal--THE DOCTOR DOES NOT LEAVE PERSONAL MESSAGES JUST TO CALL HER IF IT'S GOOD NEWS. Never. They'd tell you everything was fine, not to worry and they'll see you at your next appointment. I told the nurse, "Look, I know something's up. I've been through enough, so please just tell me what's up." She was hesitating, and put me on hold for like five minutes. When she came back, she told me a test was abnormal. It's probably nothing, but I lost it a bit anyway, and then she's going, "Oh, my god, I never should have told you," to which I had to reply, "No, me getting upset for five minutes is way better than anticipating what could be wrong for five days. I know you can see my health history--the cancer and all, so I can take bad news. And this is just run of the mill bad news." I hang up and tell her to have a good weekend.

Then it occurs to me to call back and give my cell phone #--they only had my home phone # so I'll never be able to connect with the doctor since she'll mostly call when I'm at work. I leave a message and then I get a call back telling me that the nurse paged the doc and she'll call me in a bit. She does. And i now in a lovely game of telephone she says, "Why do you think you have cancer again? Why did you tell the nurse that?" She was being very kind, but at the same time, I couldn't help but be a little agitated at the nurse because I hadn't said that. But I often find that people goto the extremes of conversations. Do you know what I mean? I make a few statements about certain American policies, and all of the sudden I hate America outright. I apparently want to live in another country and well, can I come up with another country as good as America? I'm like, wah? I didn't say that. "Oh, no, but that's what you were thinking." And I'm like, no I wasn't. And then it goes on and on and I find myself defending a position I hadn't planned on even taking about Saudi Arabia and other random nations and I'm so confused because by the end of it I've been deamed a self-hating, pessimist, America-bashing liberal when all I was saying was gas prices seemed really high and it sucked and should I buy a hybrid instead of the car I got? I really wish I had a tape recorder so I can see the exact point that a conversation takes that terrible turn where it no longer looks like what you started out with.

Back on topic, I had told the woman that given my cancer history I'm used to doctor's dancing around the issue, and I'd be better off if she just told me. Ugh. So now the doctor is talking to me like I'm twelve, because she can't believe why I had immediately jumped to that conclusion and I ended all this with "No, I think we just have to do the test again." She was like, yeah, that's what I was going to say! Imagine what would happen if people just didn't always assume that they knew what the other person was thinking--the conversations that could take place! The arguments to be avoided! It would be revolutionary.

And for the record: I do not hate America. I do not hate Americans. I do not make blanket statements like that. So the next time you have a disagreement with someone on a certain issue, refrain from calling them names and questioning their loyalty to a country. Geezus.

2005-03-18T21:25:00.000-08:00

I was away for business last couple of weeks. I wound up with an excrutiating sore throat and a swollen gland on the right side of my neck. I was exhausted, glassy-eyed, nauseus. I had to stay for meetings but the day I got home, I headed straight to the doctor. My regular doctor wasn't in, so I had to see one of his colleagues.

Let me explain--I was really sick. I mean, I could barely move. So, while I'm there at 11:30 in the morning, the nurse's aid pitches a fit that she'd been there since 8:30 a.m. and didn't feel like seeing anyone else. She's tired and annoyed. Whatever. The doctor comes in and doesn't take my blood pressure, my temperature or my pulse. Asks me what's wrong, looks at my throat and says "Yup, you've got tonsilitis". I said, Okay, well, I also was hoping to get some bloodwork. "No, not until you're better". She said. The real reason: the nurse's aid refused to draw anyone else's blood and threatened to hurt people if she was forced to. I had been quite sick the past couple of months on and off, and I was like, "Wow, I just can't catch a break." And that rude doctor turned to me and goes, "Well, given what you had gone through last year, I'd say you're doing quite well, so I don't know why you're complaining." I stood in shock and then the doctor just shooed me away, gave me a prescription and a curt "Take whatever you want" when I asked if I could take Tylenol for the pain.

How is this acceptable? I'm truly amazed. I really had no words. This doctor didn't want to be there and it showed. I mean to the point of potential malpractice. I am seriously just confused. I would love to show up at my job at around 11:30 declare, ya know, I'm just not feeling it right now. I mean, I potentially could, I work in training so it's not like anyone's going to DIE if I did that, but there's this thing called responsibility that stops me and no one's life is in my hands. Geez. Scary isn't it.

2005-02-20T21:10:00.000-08:00

It's amazing how a cheesy movie, with horrible acting and very lame editing, can stil manage to make me cry and put an end to my going-out plans. Let me explain.

I am about to admit that I'm a huge Ryan Reynolds fan. Yup, I mean, like fourteen years ago, I actually watched the show Fifteen when it was on Nickeolodean and had a huge crush. So there you go. Yes, I know he's marrying Alanis Morrisette and well, his movies aren't always the greatest, but he has this ease and charm that I can not help but find attractive. Anyway, he was in a movie on ABC Family and I just happended to TIVO it. After catching up on all my shows this evening, I cliked my now playing and turned on.

It was horrible. It really was. It was overdubbed, the dialoge was horrific and well, I didn't really want to watch it but I was sucked in. And there I was, enjoying the cheesy goodness and yup, it turns out that this loveable, young, wonderful teacher had terminal cancer. Throughout the movie you get glimpses--that he doesn't want to have relationships, he's kind of cut off from his world outside is job, yadda yadda yadda, and seeing him in the chemo room kind of jolted me. And I was literally in the chemo room that I had received treatment in two days ago, so I have no idea why this moved me. Maybe because there I had been visiting, on my way to somewhere else, and I had gone back just to say hi, to show off that I have hair, that I look normal. I don't know. But here I am, blotchy faced and a tension headache hitting between my eyes. Needless to say, I won't be getting dressed to go and sit at a bar and watch the crowd go by.

2005-01-26T06:29:00.000-08:00

Insecurity. I’m pretty sure that we all deal with some measure of it. Me, I’m pretty bad. I know I’m extremely insecure, mostly about how I look. The worst part about it is, I studied rhetoric and cultural theory in college, with Susan Bordo as a frequent book selection, and Leslie Heywood a teacher and advisor, so truly I should know much more than the average person about the damage of the conventions of beauty. And while I’ve been able to dissect the social constructions around beauty, I’ve still never been able to reconcile it within myself. I give good speeches, but I’m not sure if I ever truly accept even my own words of wisdom.

Ah, so how does this at all play into this game of survival? I think this part of me is genetic. When my grandmother was dying (of brain cancer) she was talking about seeing my dead grandfather and a biker angel. She had become obsessed with Ricky Martin and Joe Pesci. But even though her mind was slowly slipping away, her vanity remained intact. She still wanted to wear makeup, and nice clothes, and she was so concerned about how the steroids and treatment was making her look. My nanny was a beautiful woman. She was absolutely stunning. She was a kind, good-hearted person who gave of herself and any definition of beautiful—in regards to both the aesthetic and personality—applied to her. While others questioned why she would care what she looked like, I didn’t. I understood even then. She would’ve been beautiful to me no matter what; and I know that she knew that, but it didn’t mean that she didn’t want her lipstick applied perfectly day in and day out.

What happens is that we become attached to our outside persona. We recognize ourselves in photographs and the mirror. It’s how we reach our identity. But this sickness, this disease, takes that away bit by bit. You’re subjected to countless humiliations and all of the sudden you’re completely dependent on everyone you come into contact with to help you get well and not lose your mind. And you look in the mirror and you wonder: Is this who people see? Is this who I am now? It’s not even fitting into some idea of beauty that Hollywood has created. That’s why I don’t understand plastic surgery; why would you want to look like anyone other than who you are? I would think that would completely screw with your head. Believe me, I wasn’t even thinking, damn I wish I could look like Kate Bosworth. I was thinking, when can I look like the girl smiling in the photos of my trip to California? When can I look like me? If I don’t look like me, and I certainly don’t feel like me, who am I? And if I can’t connect to that, do I lose that part of myself?

I am readily admitting I am insecure. I try to be better than that, I’ve written about it, and I wonder when I’m going to grow up and be comfortable in my own skin. When I’ll stop comparing myself to other people, and feel confident in knowing who I am.

2005-01-11T13:55:00.000-08:00

This is a new year, and I suppose we’re all making resolutions. Or the smart ones of us aren’t wasting any time making them, which means that in one month there will be no guilt about not sticking to the excel spreadsheet that lays out the year’s budget. I actually signed up for a program called Builders of the New World, which mentors homeless children, sometime ago. It just so happens it gets kicked off in the New Year, which makes it seem as if I’ve resolved to do more charity work. But it’s not a resolution, it’s a conscious act, and it’s one I’m actually committed to.

I had my first training session on Weds. night, and I had a great time. It seems as if it’s a really great program. We had to go around the room and tell why we were involved. I had to write something similar on my application and I found myself then saying trite things like “I can learn so much more than I can teach” blah blah blah. But when my time came to speak it out loud, I found my reasoning much different. I had always worked with children and when I was sick, I wasn’t allowed to be around the disease-spreaders (I love them, but kids are gross and pass germs around like cookies) and it really sucked. I find kids to be very refreshing. For instance on Christmas my aunt had come to the house but didn’t want to hug me because she had a cold. I said, “Well, I’ve already had bronchitis this year, so don’t worry about it,” and my neighbors 7 year old daughter turns and says, “And cancer.” The whole room fell silent and I burst out laughing. I said, “Yes, and cancer but I don’t have that anymore.” And she said, “And bronchitis you don’t have anymore either.” It was such a random exchange but it really stuck with me. Anyway, back to the training session, I’m up and I said, “Well, last year I was diagnosed with cancer and when I was going through treatment, I wasn’t allowed to be around children. Now, I feel ready to connect to them again and I think this program will really be helpful. Plus it’s a creative outlet, so I’m not just raising money and removed from the situation.” And I found myself being much more honest. It’s probably really selfish that I want to do this program. I want to get back to doing things, and not feel so disconnected from people, from life. And also to get myself out of my own problems. It’s easy when we have something happen to us to get dredged up into it. I find that a lot of my recent charity work has to do with cancer. But I don’t want to neglect the fact that there are a lot of varying degrees of terrible situations and that I can’t just be like, “wow, this happened to me, so poor me” because that’s not really how I feel about it. And it’s not bad to be reminded now and again that I am pretty lucky all things considered.

2005-01-07T19:01:00.000-08:00

Awhile back I wrote about how people tend to not really treat you all that different when you're a "survivor". I re-read the post and realized that I sounded pretty angry and felt some sort of entitlement to be treated differently; like I shouldn't have to put up with the same shit that everyone else does. Sort of like, god damnit be more careful of my feelings!

I've thought about it, and I guess that if everyone was hyper aware that I had been sick, and dealing with all this stuff, then I'd hate that too. I'd hate to be treated differently at all. What I was getting at is that probably what we all deserve is to treat each other better. I don't think you have to be sick or have a traumatic event or anything, I think that in each and every way possible, we need to make a concerted effort to be better human beings, for the sheer fact that if in some small way we can make someone, anyone's day better, we're reshifting this screwed up planet consumed by anger, money, power and violence. But on a day to day basis we forget occasionally forget to be kind or honest or thoughtful. We carve out days to do so, or hours, or events. I think I was just so frustrated with someone that day, I wanted the special treatment. But in general, nah, I don't want kit gloves just for being a survivor.

For instance, we were all at the bar the other night and my friend D notices something on my neck. He starts to go, wah uh, what's this. And I spun around, confused and was like, it's a scar. He freaks out, going, on my god, I thought it was a hickey. I start laughing, and said, no, no, it's not a hickey but do other people think that too? Hmmmm, that might not be helpful when I'm out and about. He finally relaxed and realized that I wasn't going to get upset or freak out or be like, you insensitive jerk it's a biopsy scar. Hey, maybe if I didn't like him I would, but in general, that's not my style. I don't like to make people feel bad for things that they didn't know.

There is no specific way to deal with a person being sick, or going through a family crisis or a traumatic event. The best way is to ask what they need and want from you. Explain that you're new at this, or that you want to be there for them, but they also need to express to you what that means. We as the patients shouldn't be expecting everyone to suddenly know what to do and read our minds. We're all different, we all handle things differently and if there was a great catch-all, as the magazine articles would like to suggest, then there would be no need for conversation at all. We could take their lines and use them in everyday life and be done with it. But life, illness, death, injury, war, anything is messy and painful but we owe it to each other to start to talk about it, be honest about it, have real conversations about it. That's always my theme--just be honest. On all ends. Walking around on eggshells is how we distance ourselves and makes for miscommunication and anger.

2005-01-03T13:27:00.000-08:00

I used to write poems when I was younger. I’m pretty sure that they were horrible. I was always writing about some boy who may or may not have liked me and how my love was unrequited and while I’m sure it felt meaningful at the time, I look back at that and think, “was this for real?” The problems we create in high school seem so much bigger than us, and no one understands, no one can possibly be going through the same thing, yadda yadda yadda. As time passed, I found that I had less words to put into rhyming couplets. My problems had become deeper but I was also more removed from them. If someone asked me to write a flowing poem about the death of my grandmother, I wouldn’t be able to do it. She was far more meaningful and special to me than any high school boyfriend. But while I could compare the hurt of being broken up with to a gaping black hole in my soul (hey, I never said I was original) I really couldn’t find the words to deal with her dying. I know that a piece of me died when she did, but at the same time, I couldn’t put into any sort of form of what that really meant. I still probably can’t.

When I started this blog, I was hoping to get out on paper what it felt like to be going through cancer, surviving cancer and then just, well, surviving. I never felt that no one knew what it must felt like. Quite the opposite—I figured there would be tons of people with whom I could nod my head and say, “exactly”. My friends who never heard me express anything about my illness would read about my experience and gain a deeper insight into not just my journey, but their own or anyone else that they would meet along the way. But sometimes, just like above, I find myself falling short of the words to truly express either the joy or the pain of what is happening. And again, I find myself with endless paragraphs about unrequited love, although not as poetic but at least much more realistic. It’s funny, I’m so excited to not be writing about cancer, even if relates to my cancer in a tangential way, because I feel as if it’s something others beyond this little world I’ve created can relate to. But I wonder if it’s because I want to put all my effort into something that in reality doesn’t really matter all that much to me. I think we all do it. Put up those fronts to the rest of the world, hoping that if we can find those commonalities, we’ll never have to really discuss what makes us so different. I mean, I refuse to believe that people only think about the most shallow of bar discussions on a constant basis, even if that’s all you ever hear them talk about. But these barriers we create, hidden by topics of no substance, but are things that we can go on and on about, things that always provoke some sort of endless conversation. That’s always what attracts me to people. The minute they let down that barrier, even for a brief moment, that softening of their persona, I’m intrigued. It’s like you’re really seeing someone and they’re really seeing you and all the pretense and the lies are gone, and I feel like, yes, finally, I can say something to an actual person instead of just writing it and being removed from it. But the moment passes, and the walls go back up and maybe I spend the rest of my time looking for that moment again when you can really connect about things that matter. But it’s probably not appropriate to discuss with most people that you meet. It doesn’t even necessarily have to be depressing, just meaningful, but it doesn’t matter, I guess. Not all the time anyway.

So, that’s just something I’ve observed lately. As I start to participate more, I’m also finding myself saying less. Becoming obsessed with talking about those topics that have little relevance in the grand scheme of things, but then I don’t have to worry about discussing the latest test or the how I had to go for an echo cardiogram on my day off. But I don’t think I’m doing anyone any favors by forgetting the reason that I started this blog. Or maybe, this is what happens when you become more removed from treatment, your cancer becomes the core section of your life, but you also become less and less attached to it. It doesn’t rule your life, it just touches it. I’m not sure.

2004-12-28T19:29:00.000-08:00

As 2004 is almost ending, a world-wide event has proven that no matter what our personal tragedies, there is always room for something greater in devastation than we could possibly imagine. I have no words to write about what I've gone through or am going through or anything like that at the moment. All my thoughts and prayers are halfway around the world, hoping that those areas devastated by the tidal wave and earthquake will be able to receive the aid they need in order to get through this horrific ordeal.

I donated to OXfam america (an organization that I'm familiar with after working with Amnesty International UK and also doesn't make me question like the Red Cross). If you want to donate to the relief effort, please go to networkforgood.org to see a list. I'd suggest going directly to the charity though. . I'm not big on solicitation but for this I'll definitely have to make the exception.

2004-12-25T19:56:00.000-08:00

Merry Christmas! It seems to get shorter every year--I think when I was little the season seemed endless. But it's still nice. This holiday was no exception; I must say it was leaps and bounds better than the last one--no oxygen tubes! Which as we all know, sets the stage for a very merry holiday! No, seriously, I had a lot to be grateful for this holiday season and well, I can't really complain (I'll save that for the off nights). It's been a very up and down season but at the same time, it's always more up than down. I actually went to Midnight Mass. I felt that since so many people put me in their prayer circles and lit candles, that I should go and pay homage. And the priest had a very nice sermon about how this season is always about looking forward. And how it represents hope, renewal and promise. And I know that with each passing day, I am closer to believing in those three things. And being around friends and family and good food, it makes you really feel as if anything is possible. So no truly valuable insights or gripes. I think for at least the next week, I'm just going to believe that there's much more that I can be, and wish for and know how much I am truly blessed.

Merry Christmas! Happy Christmakuh or whatever it is you celebrate!!!!

2004-12-23T21:39:00.000-08:00

So there is a unique lesson that I've learned over the past couple weeks. No one really cares that you were sick. No, no, I need to amend that. That's not a fair statement. Some people simply do not care; not in an evil way, that's not what I mean. They do not care that you've been through hell and that you simply deserve better than what they can give you. Do I sound bitter? Sorry, it's just that for some reason I'll be honest--I thought that being a "survivor" kind of gave me the status of: you know she's been through enough, I really don't want to screw with that. But at the end of the day, well, we're all only human. And any time you put yourself out there--in any regard work, friends, romantically--you're still going to be on the same playing field as everyone else. Just because you have a port scar, doesn't mean that you can't get hurt. I honestly think that at 25 I've been through enough. I've buried two best friends, saw the Twin Towers collapse and had to walk through the rubble, and got through my own serious illness. I just want it not to be so hard. I don't need anymore life experience.

2004-12-21T08:27:00.000-08:00

Last year, as we all know I was bald except for a few stray wisps. I got a very expensive wig, that I never wore except on two occasions. One was for a photo. I had on my very expensive wig and my brother put on the wig I had received from the American Cancer Society which honestly looked like, I’m not sure how to put this nicely, but that if you were going to have a crack-whore character in a movie, she’s wear it. Anyway, my brother and I posed for a photo, which my mother put on a Christmas card. Yes, that was our Christmas card that year. However, do you know what my mother forgot last holiday season? To put my name on the Christmas card. So there’s a picture of me and my brother and it says, “Happy Holidays from (insert mom), (insert dad), (insert brother #1) and (insert brother #2)” and no Terri. I know she felt very bad and I was laughing because it was like, uh, are you preparing for something? Because one year we got a card from our parents friends which was the three of them, plus the headstone of their father. Which the sentiment was nice, but it was kind of morbid to have it on your fridge.

2004-12-20T10:29:00.000-08:00

Today it is absolutely freezing out. Bitter, bitter cold. What the hell? A few days ago it was so nice out. I was saying to someone how it was a mild winter, and then today I’m bundled up like Yukon Cornelius, rocking my black snow boots (not Uggs or anything that resembles them—these are in fact quite functional) and thanking that I had the wits about me to replace the scarf and gloves that I had lost two weekends ago. Cause, damn! And I love all my coworkers who are exercising their right to not come in and be like, "I'm working from home" simply because it's too cold for them to travel in. Yes, I'll admit it, I've done it when it's been really rainy. So rainy in fact, that I could not cross the street. However, I feel that in this day and age, we will not call out for being sick, but it's much better to call in for the weather. That's awesome. Let's show up at the office, nauseus and feverish and coughing and sneezing and show how dedicated we are to our jobs. And let's not mind the fact that there are about 30 people that we're coming into contact with and who now we're gettng sick, because we're dedicated! Stay home, rest properly, not infect the whole office--NEVER! It's all about dedication to spreadsheets! Give me a freakin break. And right about this time last year is when I had the PCP and it wasn’t this cold, and can I tell you—thank god, or else I’d probably be dead.

Speaking of being dead; yeah, I’m not always good at the segue. I’m working on it though. It was nice to talk to the ex this weekend, as I’ve mentioned below, because I’m a sucker for compliments and also it’s nice that when your 15-year-old boyfriend (who has grown up quite nicely) still thinks your cute. Hee. Blushing right now! Anyway, we were talking about our experiences (his in the war) and he told me how a missile landed right by his camp and somehow didn’t go off. He tells me that he doesn’t know the chances of that, but for some reason the man upstairs wanted him to have a second chance. I think a lot of us feel that way in our lives. Because there’s so many opportunities for us to be graduation photo on the front page of the Daily News, and yet somehow a little to the left, ten seconds late or completely missing the bus, makes all the difference. It’s an odd thing to ponder.

2004-12-19T20:00:00.000-08:00

So it's bound to happen--the ex-boyfriend run ins. Sometimes they can be good. Sometimes they can be horrifically embarrasing. Sometimes you aren't even there. Well, for the first and the last related to my cancer-survival experience.

This weekend seemed to be blast from the past time. I have the remarkable ability of recall. I can remember names, faces and events (even with the chemo-fog) pretty well. So here I am, not drinking per my mantra of last week (btw, more below), and across my line of vision are these two birthmarks on the side of a guy's face. Don't ask how I remembered this but I was like, "Hey!" He turned around, and yes it was my high school (the early years) boyfriend. He didn't recognize me at first--oh I should explain what I looked like on this outing. I was dressed well enough, but I had decided to not wash my hair (sexy I know) and throw it back in a headband and I was too tired to put on my contacts and makeup, so I was completely without makeup and wearing my glasses (hot, I know). Yes, it is true, you will always run into people when you look absolutely like you are in your living room on a Sunday, eating a bagel and watching football. Needless to say, he looked really really good. Damn! Anyway, we chatted for a while, and he says, "So, I heard you were a little sick" and I know he knows that I wasn't a little sick, but he obviously wanted to bring it up and he's never been a master wordsmith. Anyway, I replied, "Yes, I had that whole cancer thing, but I'm fine now. Don't I look fine? I mean, in general, not tonite, because I really don't look all that great tonight," and he started laughing at my babbling and he was like, you look great Terri. Short hair is really becoming on you. And yes, I melted. It was nice to see him and to chat with him and it was just the pick-me-up I needed to feel more like myself. Particularly, after well, see below paragraph.

Anyway, so me and my mom chat all the time about stuff. It's honestly what happens when you're joined to the hip with someone. When she had to help me through some really embarrasing nights, and then all that time in the hospital and the chemo room--I mean, you might as well talk because there's a lot of hours to fill up. Anyway, I call her the next day to tell her who I ran into. And she counters with, "OH, I forgot to tell you I ran into J. on Friday night in Pathmark". I was like, WHAT? It's already Sunday--that warrants an immediate update! She told me that he walked by her, and he lost weight since we dated (swearing he reminds her of Nick Lachey. I don't know, I don't trust that comparison. And if he does--it doesn't make me feel any better). So he walks by, she's like, hmmm, I think that's him and she decides to follow him and say hi. Don't ask--we dated like 7 years ago (high school--the later years and into college). So she's like, hi, there it's me, Terri's mom, yadda yadda yadda. He's all like, "Oh, how is she?" and my mother proceeds to say this, "Well, she's a year in remission" and he was like, "Wait, what?" And then my mother didn't know what to say next. She had believed, for some reason, that everyone knew what had happened. I had to remind her that people do have lives, and since there wasn't a billboard up, that people might not know. So she throws him for a loop, and he basically doesn't know what to say and can I tell you--awkward. So he then introduces her to his fiance. He is marrying the girl that he dated after we broke up. Which is very strange to me. I'm pretty sure she followed up with a quick synopsis of my job, my brothers and all that stuff, but I could not imagine what that is like. The girl you had a horrible break up withs mother (it was like a bitter divorce) tracks you down in a supermarket and you try to make polite conversation only to find out she had cancer. Ugh. But still--makes a great story.

2004-12-19T19:56:00.000-08:00

I'm having a lot of trouble sleeping. Right now, I'm all cozy in my bed, and I can hear the wind whipping against the trees which is throwing them into my windows. Earlier today I saw the backyard cats, all snuggled up together and sleeping. And now, I can't get the vision of them alone and cold and with this weather the way it is. It's honestly making me so upset, that I'm having a hard time getting to bed.

Because I always think of how much I have. Maybe in comparison to some people, I don't have that much. But honestly--I have a good job, a nice apartment, nice clothes, spending cash, great friends and family. I also have my health, which is something that I put at the top of the list. This season is so hard, because I think of those that don't have what I have. I struggle with that notion; like I could be doing more but at the same time, I'm not sure what that is. I couldn't really take the cats in and I'm not sure if I should have something built in the backyard for them, because then it might just house fleas and vermin and I might be doing a disservice. But this "cycle of life" thing is really hard to accept. Why there are those who are out there suffering--either from illness, or poverty or abuse--and I'm not. What lucky straw did I get to pull out in order to be here and be so well taken care of?

2004-12-16T18:04:00.000-08:00

I'm not attempting to be a constant downer. I had hoped that with each revelation about the difficulties of simply existing, never mind being a cancer survivor (or survivor of any life-altering event) that I had infused a bit of humor into the struggle. I was watching the O.C. tonite, yes, I love that show, and Seth (the boy that beat my brother out for the part so we're not to mention the name of the show in front of him, even if him and Adam are friends) was consoling Lindsay. I could tell you about what but then this becomes a whole recap of who is who and what is going on and that's not going to really help. Anyway, he says that they joke after traumatic events, or even during traumatic events, and even though she looks skeptical at the time, she catches on and throws one in herself. I would hope that I do the same here, and in my life. My friend accuses me always of being self-pitying, I prefer witty with a side of self-deprecating. I know the limitations of a situation and it's hard to be honest in a forum when you don't know who's reading it and what they're thoughts of you are. I'm always concerned about how people view me, what they think of me, and how I come across. So being here behind words doesn't really help to gauge the reaction of those who may or may not be looking this over in either agreement or snide giggles. I guess that's the chance we all take when we agree to be honest about what goes on. And I guess that's the chance that I'm taking when I decided to not just write about my illness in and of itself. That will always be the safer route because most people won't mock cancer patients. But when you choose to be honest about life after treatment, or life in general, you open yourself up so much more. And I find that here I am, making jokes about the fact that at this point in time, I'm so confused, so lost, so searching and at times, so lonely. Lonely because I feel that every action needs to be reasoned and explained. I'm always concerned about the deeper meaning behind each choice I make. It makes you guarded; and when you let down your guard and become vulnerable, even for a minute, you're more likely to freak out obsess. It's so much easier to be closed off, to not tell anyone what this is like, but then that's only because no one can know of the embarrasment or the questions or anything that can't be tied up with a pretty bow.

I'm not going to say I have any answers. It's obvious from reading through this I don't. I am struggling with my new life. I hadn't ever thought that I didn't have to leave home or move across the country in order to start over again. Although now, I feel that it's exactly what I'm doing. I'm reestablishing things that most people my age have already done. They've navigated the unsure world of where I'm at just now, and whether or not they've actually come to any conclusions, they at least know somewhat of where they're going. A lot of my friends can't understand my constant overanlyzing or seemingly strange behavior. Who cares if you got drunk? You had a good time! Who cares if your boss yelled at you? They'll forget about it tomorrow! Who cares if your bank account isn't all that high? You're only 25 and single! I know how to handle the big stuff, the actual life crisis. It's the little stuff, this everyday stuff, that I just can't seem to get a handle on.

2004-12-16T15:10:00.000-08:00

Oh wow. So you write something and then before you can hit the delete key, it's published. It's out there, and you can read over and over again about your a. lack of dating skills and b. fear of death. Nice. But I'd be going against the rules I set out for myself when I started this whole thing if I deleted what I wrote. So I'm stuck with the whole world (or the handful of people who read this) knowing how lame I truly am. But in the new spirit of "LIG" (let it go), I will and allow for the fact that I am not as cool or as detached or as together, I might have wanted to appear to the world at large--and in that instance I might not have been fooling anyone anyway, so it's really not that much of a loss, right? Okay, moving on.

But I guess that's what this is all about--fear. Our fear of being human. We always are consumed with it, even if we try not to act like it. Yes, I am very scared of dying. Of being the friend that has left the group, to be talked about in the past tense, and after a week of intense crying to be an afterthought on holidays, and anniversaries of birthdays and deathdays. The moments in between where you may have been a thought in someone's head when you were alive, you no longer are. You're no longer an active participant in anyone's life, and because you're alive to know you're going to be forgotten when you're gone, it's a scary thought. Not that I think about this all the time, but I'd be lying if I said it didn't cross my mind on more than one occasion.

Okay, more fear. The fear of actually caring. I feel that I have this pattern of having guys fall really hard for me, only to then have them turn around and coldly leave. Often with no explanation. So, I'm always left with the "what did I do wrong" "what can I do differently" and "what the hell is wrong with me." I'm tired of all this. It's so exhausting to be in a relationship, to fall for someone and then to have them decide to move on (regardless of the fact that this is normal and human and how life actually progresses). See because caring can lead to getting hurt, and I am just done with getting hurt. I'm done with not knowing what to say when, what to do when, worrying about if I'm too aggressive, too shy, saying the wrong thing, doing the wrong thing and all that other stuff that comes with it. I'm done with getting hurt and disappointed, because I feel as if I have enough to last me a lifetime. But I guess you can't be in a relationship, or a semi-relationship, or a casual hookup that takes place at 4 a.m. drunk and tired, without the possibility of getting hurt. So, quite a dilemma. I hate monday morning quarterbacking about my weekend and where it went wrong, but I guess it's better than recapping all the t.v. shows I watched. I don't know which I'm more afraid of--dying alone or analyzing alone.

2004-12-16T13:57:00.000-08:00

I've mentioned that I'm horrible at dating, right? I can't read signals--good and bad--and like most things in my life, I tend to make a mess out of any and all potential boyfriends. I think that I also have this problem that I'm trying so hard to erase last year in the end, I wind up making an idiot out of myself. And in my lame attempts at being 25, I find myself constantly questioning every single decision that I make. And I have a hard time dealing with my mistakes. I feel that everything should be better, I should be more enlightened, and yet, I can't seem to get my life back on track, where it was. When I was completely confident in a career, when I had no problems meeting guys, when the world seemed like it was full of endless possibilities. Now, I feel like I'm pressed up against the starting block, waiting for the gun to go off, so I can make the mad dash before it's all over. I'm petrified of dying young. I'm so scared of not having lived, that I make rash and stupid decisions.

When it comes down to it, I guess, I never really admitted my ultimate fear of my untimely death. We had to do a visualizing exercise over the week at a leadership and we had to see ourselves in a year. Okay, why did I see a headstone? Is that not fucked up. I think that's unbelievably depressing. What am I thinking? It's not as if I've been given just a year to live. But here I am, scared of getting to close to anyone in case I do die; and then scared of not getting close to anyone in case I do die. I really am a headcase. I have serious issues.

2004-12-06T08:23:00.000-08:00

On November 13th, I received an email from my friend Lindsay, which told me how she got my call but that she was really not feeling well and things aren't going well for her at all. She wasn't in the mood to really talk about it or write about it.

"All I have to say is--you are so lucky that things went smoothly for you. I would give anything to be in your shoes. I will try to give you a call back when I am feeling better or when I actually have good news."

I cried over this email for about an hour. I was sad that she was not feeling well, sad that talking to me wouldn’t make her feel better. I knew she was dying and I wanted to help her, but I wasn’t sure how I could. So I went to the store and stocked up on DVDs, an angora hat, Skittles lip gloss, a care bear canteen & key chain, a book on tape, a quick read that I really enjoyed, some other stuff that I’m forgetting right now. I packed up a box and sent it out. A week before she died, Lindsay sent me a Thank You note that she’d call when she was in better spirits. Seeing as how this box cheered her up, I went out and bough a bunch of new stuff—Christmas pajamas, fun tee-shirts, a conch shell that I had from my trip to Key West. I was waiting for a box of makeup from my friend Karen, so I didn’t get a chance to send the box out yet. It’s sitting on my windowsill. I guess in retrospect it’s a blessing that I didn’t get a chance to send it out. Because that would’ve been awkward for her parents to receive; but it also sits there and makes me feel sad and angry and guilty. Sad that she’s gone; angry that she’s gone and guilty that that box represented my efforts to make not just her feel better—but myself feel better. It was selfish really. Sending those gifts made me feel less like I couldn’t do anything and more that I was a good friend. It was as much for her as it was for me, prompted by that email that I was “lucky that things went smoothly for {me}.” When in fact they did. I’m here. I can write this all down. I am still alive to feel guilty about it all.

It also makes me cry that she probably felt so alone. I know that a lot of her friends had dropped out of her life. We make excuses for people, talking about how hard it is to be around people that are sick and we’re asked to forgive them. I call bullshit. I do not care how busy you are or how hard it is to be around a sick person, you just do it. A lot of this girl’s friends just stopped calling. And at the end, because I had gotten better, she probably found it hard to talk to me. And I mean, god, how is that fair? You don’t get to say you’re sorry when the person is gone. And she was so sweet and I know she didn’t tell her friends how they made her feel. She didn’t get a chance to stop and say, “You know, I really need you at this point in my life.” And we all do it. We all forget and we figure we have time to make it up. A year later attempts to visit do not make up for the fact that when that person was sick, and alone, and scared that we weren’t there. It makes me so angry. Especially at this time of year. Look, we are human and when horrible things happen, you know what, we’re not going to stop worrying about our hair, our weight, work, or any of that petty stuff. It’s always going to be there and it doesn’t make us any less of people because it upsets us. It’s life. But it really is time to appreciate the people in our lives. And to appreciate the value of life. To stop wasting it on past hurts and realize that there are so many people out there that need us. By being in a holding pattern and dwelling on loss, we forget those that are out there now, and we become skeletons of our formal selves. Maybe I did everything I could—I called, I emailed, I sent gifts, I attempted to visit (usually thwarted by a medical emergency) and maybe I didn’t, I probably could’ve listened more, complained less, just been a better friend. Maybe I will never get over the thought that my friend died questioning: “why this had to happen? And why are all those people who didn’t even call me on a regular basis going to be crying over me now?”

Why does it always take a person to be gone before we celebrate their life? Why do we always think that tomorrow is the day we’ll get the time? Who are we kidding? There will never be enough time, but there are always those seconds that it takes to jot down a quick “hey there.” I know I’ve ranted on this before, but it’s one of those things that I think I can never get through enough, even to myself.

So in honor of my friend, I want everyone that reads this to send out a note to everyone that they consider as their friend. Not a mass email—individual notes that say hi, how are you and what have you been up to. Send a regular card, or a holiday card with a personalized note. If you’re peeps don’t have email, then call while you’re commuting or if you have five minutes at your desk. If you have to leave a message, hey that counts too. If you can get everyone together not for someone’s birthday or the holidays but just because. I’m donating the gifts that I got for her to the hospital; not just the cancer unit but if there’s anyone there that’s in that “in-between” age because they often get left out. Usually there are tons of gifts for kids but everyone older gets a bit shafted. Let’s make sure that as many people as we can don’t feel alone because those extra five minutes might mean the world to someone who’s searching for a reason to face the day.

2004-12-04T18:46:00.000-08:00

My friend Lindsay died on Weds. Her mother called me tonight. Lindsay was a 21, and was diagnosed with Non-Hodgkins Lymphoma three months after me. We never met in person--instead we were Lymphoma buddies, trading emails and hours long discussions on the phone. She was a fantastic person--so fun, so positive, so full of life. We'd gossip and commiserate about stuff and talk about basically everything. She made me want to be a better person about this because she never complained, not once, and then I got an email about how things weren't going well and that she'd call me once things got better, but I never heard from her. well, actually, I sent a care package with DVDs, and care bear stuff, and flavored Skittles lip gloss and two weeks ago I got a thankyou note. So last weekend I bought a bunch of new stuff for her, shirts and christmas pajamas, fun stuff because I thought... I don't know. She deserves much more than I can write here. There are some people who profoundly touch your life. That just you can't believe that they exist--they are so nice and kind incredible people and you strive just to be good enough to know them. I was blessed that Linsday was in my life as my friend. And I so devastated that this world will not know more of her. And my prayers go out to her parents and her brother, and anyone who was lucky enough to know her. I really just don't think I can say anything else that will truly do my sadness justice at this loss of such a unique and wonderful person.

So Lindsay:

I will really really miss you.

Terri

2004-11-28T20:36:00.000-08:00

I'm still waiting for my epiphany. I believe I deserve it. So that in some way I can take what almost dying really means and apply it to not caring about petty ridiculousness that accompanies trying to nagivate my way through life. Alas, I can not. I am just a silly girl who waits for a boy to call her, as she also waits for the receptionist at her doctor's office to get back to her with a PET Scan appointment. Is that warped? That in the same moment of waiting for an "All-clear" I'm waitin for a date request? Ugh. I'm frightened for myself. I used to be hyper-aware, above the stupidity but now since I've been locked up for so long I've turned into a parody of the catholic school girl who gets to go to college (and no, I don't mean that in the utterly trashy way it can be interpreted. I mean it on a much more basic, clean, sadly chaste level). I think I've written that I my tolerance has gone down (and if one more person says, "Well that makes you a cheap date" I'm gonna clock 'em) and it has. It's gone back up, but I also take longer to recover from a night out of a rolicking THREE BEERS! Yes, I am actually sick for two days, ill to the point that I'm reminded of a horrible instance in college when I got completely loaded on my 20th birthday only to be picked up by my parents the next day to go to my grandmother's funeral. Yeah, I was really sick then--and that's not a story i'm all too proud of. And I get chatty when I drink; yikes, very very chatty. I don't shut up. And well, I have to say, I'm that girl that just loves everybody! Wahoo! Not in a sloppy, gross way, just in a "I'm so happy to be here way" but still, I can't seem to live that down. So here's the thing--don't I get to beat cancer and have a knight in shining armor? So that I can not find myself talking incessantly to boys who might be looking for the nearest exit and shaking my hips to My Goodies? Do I not deserve to be above all that? Have I not suffered enough humilation--what with the baldness, the weight gain, the request to pee in a bucket (accompanied by the curtains for doors and HDTV of me in various states of embarrasment), the puking, the constipation (and my mother constantly asking if I've taken my stool softener--at inappropriate times), the parties I missed, the devestation and the constant state of panic? Come on fates, give me something--not just a non-seized engine. What is the state of customer service these days?

2004-11-24T11:52:00.000-08:00

OK, yes two posts, one day, but I've got a lot to say (and geez, that rhymed). Anyway, another discussion with my brother's friend led him to say, "I don't know what to say when people recognize me and come up and talk to me. Usually, I just say thank-you. That's something they don't teach you in drama school. There's no handbook for it." To which, I laughed because he was definately baffled by the whole concept and then I got to thinking--a handbook. yes, that would be nice. People complain about there not being a handbook for raising children, but yet there are so many on amazon. For this, this survivorship/patientship when you're in your twenties, there truly is no handbook.

Let's take dating. Let's look at that bestseller, He's Just Not that Into You. Why is this book flying off the shelves? Instead of deciding that we should decipher all those crazy signals that the men give off, let's just put it simply: Everything would be a whole lot easier if someone would just tell the truth. And that is why game playing for me, at this stage of my life, is off the table. I know that with dating comes the inherent cat and mouse, will he, won't she, but geez, I just don't have the time or the energy to expend. Seriously, I know some people will counter and say, "No one does" and I'll agree. The whole lying pieceof the dating jungle. But here's this--do you know what it's like to have your doctor look you in the eye and tell you she's 100% sure you'll live and then like a year later you find out from your slightly tipsy mother that this wasn't the case. That the doctor, in fact, thought you might not live at all? Ahhh, but no, please tell me you really think I'm great and can't wait to see me again. Because, really, I want to spend my time wondering what I did wrong for you not to wave back to me at the bar, and not at all concern myself with the nagging pain in my back. It's a matter of courtesy. People think that lies will soften the blow, when they just enhance the delusion. Tell me you really don't think you want to get together after this--I'll be pissed but I won't wonder. I HAVE TO SPEND THE NEXT FIVE YEARS WONDERING IF I'M GOING TO DIE I DO NOT WANT TO SPEND EVEN FIVE MINUTES WONDERING IF YOU'RE GOING TO CALL ME BACK! Goodness, serioulsy that's the book that should be on the shelves: all those who are dating, and or married, please stop fucking lying to each other and be honest. Stop staying in relationships just in order to be with someone, and/or not die alone. Don't tell me you love me if you don't. Don't be with me, if you dread the sight of my face. I need to be able to live life to the fullest, and when we lie to each other--all in the name of caring, then we're not doing anyone any favors! And it shouldn't take a life altering event to make us act better.

Back to the other sides of dating. I don't want pity. I also don't know when it is appropriate to tell someone and should I be angry if it scares them off? I had friends for years who drifted away, can I blame someone who just wanted to hang out for having some apprehension? I met this guy once who told me he dated a girl with cancer, I think she had leukemia and she kept relapsing. I asked him, "Is it hard to date someone with cancer?" And he grabbed my shoulders and looked me in the eyes and said, "No. It is not hard to date someone with cancer. Geez, why do you guys think that--she said the same thing. Anyone who makes it about them isn't worth it in the first place." But at the same time, I know it's hard. I know that it's not easy to be on the other side of the mirror. I would love to just date for the fun of dating, but I know that most guys see the baggage behind me and wonder if getting involved with me immediately means a committment.

I have this huge scar over my right breast and it makes me very self-conscious. I've started to wear spaghetti straps because I'm trying to be like, "HERE I AM" but at the same time, I am wearing a blazer over said top. I can't really drink anymore, and I hate that the only line any guy can use is "Can I buy you a drink" and if I say "No, I really don't drink" they get insulted and/or feel that they have to push said drink on me...note to all those that do that: you will not get any more charming the drunker I get and I will not sleep with you no matter how many Amstel Lights I have. I can't be around cigarette smoke, so when we're walking from bar to bar, sometimes my friends have seriously guilty faces about smoking and want to walk next to me and tell me how sorry they are and then I feel bad because I don't want them to feel bad and not want to be around me, and even this sentence is making me dizzy so imagine how I feel after a shot of Soco and Lime! Dating is hard in general; there's so much PR that we do. I'm petrified of becoming emotionally invested in anyone--I'm afraid that the minute I'm happy the sky will fall.

2004-11-24T10:24:00.000-08:00

I was talking to a friend of my brother's last night, who's an actor, and he said that the one thing that is true among all people is that they all want to be special. And that's completley true. So when I was reading a review of a book in the New York Times of the Book, "Janet and Me" I was very taken with a line from the reviewer, Joyce Johnson: "''A Story of Love and Loss''? How often have we heard that one? As if all human tragedy is becoming Oprahized, memoirs of disease and dysfunction endlessly appear on publishers' lists. Personally, I refuse to equate memoir writing with therapy; nor do I believe that it rewards one with transcendence." As an aside, she does say that the book got to her.

"How often have we heard that one?" So many times because it's not simply a story of a single couple's struggle with cancer but it's now become part of the human condition. We all want to believe that our struggles are unique while at the same time searching for the commonalities so that we have someone to relate to. Though the treatments and the side effects can be pretty much standard, there are still so many ways, that each diagnosis, each day, each "dealing with it" is different. There are some of us who are blessed to have the chemo work; others who stare at their collapsed veins wondering why if they were willing to poison their bodies to get better that the sacrifice wouldn't be enough to get well. Some who pick up and move on; some who can never seem to shake the trauma of being diagnosed. Some who seem to have found every single good person on this planet to be their friend or relative and are constantly surrounded by love and support; some who find themselves lost and alone. Some of us can walk around and proudly wear our survival in a yellow band around our wrists; and there are others who are ashamed, feeling that this has tarnished who they are and hide their disease like a bad test grade. I don't think that anyone diagnosed with cancer is lucky, there are just different degrees of unluckiness. No that's not pessimism--that's just well, realism.

Ms. Johnson gives a quick thought about transcendence, and her lack of regard for this being valid. This notion that being sick somehow gives you a new vision into the world at large. Ha! As if that's at all true. Movies would love for us to believe that due to the fact that we've become afflicted with something horrible we will be rewarded with some type of knowledge the rest of our brethren don't have (cue the Lifetime music). But well, it's probably more along these lines. Shall I remind everyone of a very memorable quote by the hilarious Bill Murray in Caddyshack:

So I jump ship in Hong Kong and make my way over to Tibet, and I get on as a looper at a course over in the Himalayas. A looper, you know, a caddy, a looper, a jock. So, I tell them I'm a pro jock, and who do you think they give me? The Dalai Lama, himself. Twelfth son of the Lama. The flowing robes, the grace, bald... striking. So, I'm on the first tee with him. I give him the driver. He hauls off and whacks one - big hitter, the Lama - long, into a ten-thousand foot crevasse, right at the base of this glacier. Do you know what the Lama says? Gunga galunga... gunga, gunga-galunga. So we finish the eighteenth and he's gonna stiff me. And I say, "Hey, Lama, hey, how about a little something, you know, for the effort, you know." And he says, "Oh, uh, there won't be any money, but when you die, on your deathbed, you will receive total consciousness." So I got that goin' for me, which is nice.

Unfortunately for this reviewer, who may feel that the stories that get to the heart of the human condition can only be told by those great writers who can weave a fiction tale around words and schemes that the "ordinary" person is far too well, ordinary to convey, human tragedy has become Oprahized. Not because it's just than any old hack can write something about their life, but because disease and dysfunction has become so prevalent. We search for the discrepancies that give us the stories but they top the best seller lists because everyone has been touched. Or if the story is far to terrible to even imagine happening (i.e. Augusten Burroughs) then people will say "that boy was far more unlucky than me" but at least he got to write a bestselling novel about it. When you're fighting for your life, or fighting to die with dignity, you are not thinking that there is some critic out there who is going to call your specific story banal. Because when it's your struggle, your fight, your body writhing in pain, there is nothing that ordinary about it.

2004-11-17T09:34:00.000-08:00

Okay, I decided to put away about 10% of my salary into my 401 (K). Here's the thing--planning for retirement is a good and positive thing. However, and this doesn't mean I'm not optimistic about a long and happy life, but I wonder if putting that money away into something that I won't technically be able to touch for another five years, is such a good thing. Should I be keeping the money in savings, and use it for a trip? Or should I take advantage of being able to live on a lower salary and take comfort that the money is being put away for the future? I'm very undecided on this.

2004-11-15T13:46:00.000-08:00

Hmmm, so I don’t know if I’ve given any quick tips/hints out to all those who are going through the chemo/radiation suckiness. But, here goes some:

1. For avoiding mouth sores during chemo: Definitely get the Hurricane Solution off the bat. Then try to rinse your mouth with Ulcer-Ease (you can get it at CVS) after every meal. Suck on sugar-free lemon candies. Also—I got one of those Oral-B oscillating toothbrushes with soft bristles and I had no teeth problems. DO NOT USE anything Listerine.
2. Taking Prednasone: try taking it with Yoo-Hoo. It definitely cuts the taste.
3. Yogurt has a lot of potassium. Try the Yoplait Whips since it has a fluffy consistency and is easier to eat than the other yogurts.
4. Also with yogurt—smoothies! Get a large bag of frozen fruit (since you can’t have regular fruit). 1 cup of orange/apple/grape juice in a blender. I like the Kirkland yogurts, but any swiss style yogurt will work. Put a handful of fruit in (being sure to wash your hands first) and it’s a really good way to get something down that’s healthy and that you need to be eating.
5. Big fan of Zofran for nausea. Also, peppermint tea is good for settling your stomach.
6. A lot of people aren’t fans of the Aquaphor for radiation. I liked either the Udder Cream or the Dream Cream by Lush (www.lushcanda.com). Also, the Aveeno Baby Oatmeal cream for cradle cap did wonders on the back of my neck.
7. Rosebud Lip Salve ($5 at sephora) helped my lips a lot. I still wind up with dry lips.
8. For drinking water—I really suggest investing in a water bottle to carry around. I had a Spongebob one, but hey to each their own!
9. I used Johnson’s Baby Shampoo on my bald head. I also occasionally put some conditioner to keep it from drying out.
10. If you are running out of eyelashes, line your lid and put on a thickening dark colored mascara on—be very wary of spider lashes though because when they clump together and you don’t have that many it looks soooooooo much worse. No eyelashes—they sell them pretty cheap at the drug store.
11. If you find you’re running out of eyebrows—you can definitely draw them in. I’d recommend using an actual kit because they’ve got all the tools, the powders, and what not and you can still use it to sculpt as they come back in.
12. I used the Dove clothes or foaming cleansers when my skin was really sensitive.
13. I know I sound like an advertisement but Paula Dorf blush in Candy Apple gives the appearance of healthy cheeks. It really rocks. Also if you want to put on makeup use a tinted moisturizer—not a foundation, a bronzer and the blush. Under-eye cream and concealer works wonders, I kid you not. Definitely liked the Bobbi Brown stuff. It’s expensive but it kept me from looking sallow. I didn’t want to go to work looking sick and well, I would spend hours in front of the mirror doing my makeup until I came up with a quick and easy routine.
14. Sennacot (I think that’s how you spell it) and Coalasce each night before you go to bed will really help with all that stuff you might not want to talk about.
15. Be wary of buying any new perfumes—the best bet is to have people get you little samples of stuff that are very light scents or use scented moisturizing creams from Bath and Body works. They’re cheap enough that if you wind up realizing you hate them, you can just throw them away and not feel too bad.
16. You're pretty much not supposed to take any supplements, except for a multi-vitamin. please ask before you take anything. Ask about any and all preventative antibiotics as well.
17. I walked around with my hand wipes at work and the Bath and Body Works Anti-bacterial hand thing. I hardly ever got a cold.
18. Ask the doc which items to always have on hand, in terms of over the counter meds whether it be Robitussin or tylenol or Claritin. No one wants to be running around late looking for all this stuff. Definately invest in a humidifier.

2004-11-15T07:23:00.000-08:00

So that last entry was a bit of a downer, eh? I'm working on moving out of that darker stuff, even though cancer (past or present) doesn't really elicit many jokes. However, I do believe that there is humor to be found.

For instance, I went to my first real family party this past Saturday. Have I announced that my brother is an actor? Well, he is. He's very good and is getting quite a career going. He's been on Broadway (as a lead), off-Broadway, and t.v. Oh and a film on PAX. Anyway, we go to this party and here's the awkward part. There are some family members who really dropped off the face of the earth. I haven't heard from them since around January. So I think that when I show up, I definately throw them for a loop and they're all like, yeah, sorry I didn't call or send you a birthday card. But um, here's some cash! Don't be mad. And I'm like--alright. Money will buy me some new stuff to make me happy. Heh. Like one time I was in Sephora with my mother, and we ran into my father's best friend wife. Anyway, so she's there and gets so frazzled about seeing me. I'm trying to say hello and that I'm doing fine, just looking at some stuff and she's seriously gunning for the exit. Recognizing that I don't want to be the girl that makes everyone freakin' uncomfortable, I say "Oh, I really need to get some moisturzer" and walk away. She runs out and then runs back in and hands me $40. Here's the evil part--I was pretty much like, no no thanks this is fine but secrety was like, yay I don't have to pay for the moisturizer! Wahoo! But no, I don't like to take advantage of people's guilt. It's not good karma. And do I need all the good karma I can muster up. Those who are saintly can pass some on. Don't be selfish.

And here is when you know you've been talked about. I'm being introduced to my aunt and uncle's friends and here is how it goes:

Aunt/Uncle: Here is my niece and nephew
Friend: Oh, hello!
Aunt/Uncle: This is Terri.
Friend: Oh. OH! (head tilt) How are you? (Internal Monologue: Hey, she's alive! How come she doesn't look like those people on t.v. all pale and shadow-eyed.)
Anut/Uncle: And this is John.
Friend: (internal monologue: oh thank god. not sick. wait. famous!) HELLO. You're the actor.
Push Terri out of the way, clamp John on back and say: So what was it like to get naked with Lorraine Bracco (internal monologue: sigh of relief. naked women--definately much better than talking to sick girl about dying. Yikes--good thing they've got more than one kid or that would've been awkward).

So, um, yeah. That moment of recongition with their friends is always bizarre because you can tell that they just don't know what to say and fear that I'm going to be like, "Happy to be here for another day." or rant on about something having to do with appreciating life. Sorry, not going to do it. Most likely I'll bitch about the season the Giants are having. Or the excellent-ness of Desparate Housewives. I still know how to have regular conversation. Pick a topic, I definately have an opinion. Just steer away from politics--because on that you may not want to hear my loud, and lengthy opinion.

2004-11-13T20:32:00.000-08:00

Anytime I talk about my illness, I hear myself get slightly self-pitying, slightly whiny, slightly angry. I hear the words tumble out of my mouth, the things I tried so hard not to say when I was actually going through chemo. Part of me wonders if I would be more at peace with it all had I allowed myself not to be so "even" during that time. Because suddenly I feel guilty for being okay, for being alive and complaining about what I went through. Comparatively I'm lucky. I'm here, I can walk around, I can do things. In one year I went from being fine, to being sick, to being fine again. Those with long, protracted illnesses would surely envy my struggle because it was relatively short and pain-free. So who am I to lament about any of it? And what do I have to contribute by writing about it? Do I sound spoiled? I feel spoiled. I am so confused because I am supposed to feel grateful, which I am, and then I still sometimes feel robbed, which I supposed I was, but maybe I'm just supposed to move on to acceptance at this point. Just accept it and realize that there are those who are much worse off than me. I should wear my luck like a charm, and feel blessed and just contented. Maybe I spend so much time pondering the whys and the hurts, that I'm lost in them and alienating those who want to scream at me "Shut up Shut up! This is now my pain, my struggle, my hurt."

When do we get to own our pain? When there's no hope? When we're in the land of those with completely perfect lives and no one can say, "well, no, see in the competition of whose life sucks more, I win". And when do we become jealous of someone else's struggle just because ours is so much worse? What kind of fucked up logic is that? "Yes Paul, I know you don't have a left leg, but I don't have either of my legs so clearly..." I get angry at the lack of understanding of my friends who stare blankly like, oh...but then I get angry that I didn't have a harder time because I feel like a punk for even bitching about whatever it is that bothers me. It's almost as if this warped part of me wishes that I had it worse--if my tumors didn't respond, if I wound up in the hospital 4 times instead of 2, if I don't know, something anything. Then I would feel right in my occasional sadness, the twinges of anger, and I wouldn't sound ungrateful. Because maturity is about perspective and while I think that I've gained a lot of it, maybe I haven't gained quite enough. I think of those children who've been in and out of hospitals since they were babies; young men and women who have no clue when this is going to be over; the women who find out the cancer has spread and have whole families to leave behind. I think of them and feel sick and sad that I even write this all down because who I am to feel any sense of regret or pity? Who am I?

2004-11-05T08:36:00.000-08:00

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.

2004-10-04T17:54:00.000-07:00

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.

2004-09-09T18:10:00.000-07:00

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.

2004-09-07T20:16:00.000-07:00

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.

2004-09-02T21:39:00.000-07:00

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.

2004-08-31T19:34:00.000-07:00

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.

2004-08-30T18:42:00.000-07:00

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.

2004-07-10T20:45:00.000-07:00

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.

2004-06-15T13:00:00.000-07:00

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.

2004-06-09T16:54:00.000-07:00

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.

2004-06-07T20:54:00.000-07:00

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.

2004-06-07T16:07:00.000-07:00

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.

2004-06-07T16:06:00.000-07:00

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?

2004-06-03T15:51:00.000-07:00

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.

2004-05-26T18:04:00.000-07:00

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.

2004-05-23T13:17:00.000-07:00

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."

2004-05-19T13:07:00.000-07:00

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.

2004-05-18T11:46:00.000-07:00

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!

2004-05-18T11:40:00.000-07:00

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!

2004-05-13T15:16:00.000-07:00

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.

2004-05-12T19:31:00.000-07:00

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.

2004-05-08T15:22:00.000-07:00

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.

2004-04-28T15:50:00.000-07:00

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.

2004-04-24T07:27:00.000-07:00

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.”

2004-04-23T05:18:00.000-07:00

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.

2004-04-22T15:57:00.000-07:00

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.”

2004-04-20T16:46:00.000-07:00

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.

2004-04-03T07:28:00.000-08:00

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.

2004-03-30T18:10:00.000-08:00

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.