Saturday, April 03, 2004

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.

Tuesday, March 30, 2004

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.