I wrote this a few days before my 1 year anniversary...
Early morning June 14th, 2003 I jumped up in great pain. Looked at the clock - it was 3:40am. I couldn't breathe. Well, I could, but when I tried to inhale, sharp pains shot through my ribs. I thought it was a muscle cramp and tried to massage it out. No such luck. I hate asking anyone for help, but I didn't know what do. I called my boyfriend at the time and luckily he was still awake. I explained what was wrong and he rushed right over. He tried to massage it out for me, and again had no luck - which made us both believe it was something more serious and we rushed off to the ER at UCSF. . .
It was now about 4am, and fortunately there was no wait. The doctors decided to take x-rays and I thought for sure I must have developed a tumor or something in my lungs. At this point I had been an avid smoker for 8 years. I had no insurance yet - it didn't begin for 2 days and all I could think about was how much this was going to cost me. The results showed my lungs were clear. They diagnosed it as a muscle strain or something of the sort. They gave me Ibuprofen and called it a night. I suddenly was very sleepy and I could breathe without pain. Thank you . . .
At the time, I was working as a personal fitness trainer so it made perfect sense that I could have pulled a muscle. I never even really questioned it. The next day I told my boss what had happened and that I had limited lifting capabilites. He was completely understanding and I worked the front desk for the next few days. On my next day off, I spent the day in Santa Cruz, basking in the sun. Being in a bikini for the first time of the season I began to notice bruises. Though I thought nothing of them at the time because I was so active.
My ex boss loved to play around and play fight with us all. One day playing around he kicked my co-worker Vally, and she later replayed it for me pretending I was her. She didn't even kick me that hard - barely tapped my shin. I remember distinctly saying - "Watch, I'm so pale and because I smoke, I'll have a huge bruise because of that . . ." Little did I know. The next day, I woke up with a bruise the size of a golf ball. It was upraised and darker than any bruises I'd ever received in my life (and I had been a tomboy so they were nothing new to me). I attributed it to the aforementioned factors and again thought nothing of it.
As the weeks went by, I kept getting sick. It made no sense that I should have a cold for so many weeks, especially during summer. Dayquil did absolutely nothing for me. Mike and I drove north to Marin to go swimming almost every day I had off, and we both started noticing new bruises everytime we went. He even made a joke saying that people must have thought he was beating me or something. It was that day that the right side of my throat began to hurt. My glands were everso swollen and my right ear began to hurt. Something was wrong. Not wanting to miss work, I woke up extremely early and went to the UCSF walk in clinic. The Nurse Practioner took one look inside my mouth, without even using a tongue depresser or taking any tests and told me I had a bacterial infection which couldn't be treated. All they could treat were my symptoms. She gave me a prescription for 90 pills of Ibuprofen with 1 refill. I took almost all of the pills in a week. I later found out that this had contributed greatly to blood condition, DIC, I was soon to be diagnosed with.
4th of July. I wanted to watch the fireworks downtown - something I'd never done. My parents and sister were gone - went to Vegas I think. We bundled up and drove down to Aquatic Park, alcohol in hand. I felt very dizzy and nauseated and I had barely drank a thing. It was actually a warm summer night (for San Francisco) and I was freezing cold. I drank so that the alcohol would warm me up. Which of course, didn't work. My boyfriend and I decided something was seriously wrong and that the NP was an idiot. He slept over that night, and the following morning we made yet another trip to the ER. This time, I had my insurance card in hand so the whole money issue wasn't on my mind. The doctor felt my glands, took one look in my mouth and saw what she deemed "white stuff". She never bothered to test it though and diagnosed me with Strep Throat, wrote me another prescription for Pencillin and sent me on way. Finally I had the medication to cure this annoying problem. Unfortunately I had to take 4 days off work because of it. I would be contagious until then and had to stay away from people. My boss said he understood and hoped I felt better soon.
Friday, July 9th - I got ready for work, excited to finally return because I really enjoyed my job and had been extremely bored at home. I walked into the gym and put my stuff down. Matt came out of his office and told me not to get settled in. His boss, Aaron had suspended me for missing so many days and we'd discuss it on Monday. He told me to enjoy my weekend off. I did stress a little thinking I may be fired, but was reassured by everyone that that made no sense since I was a wonderful employee and had missed only 6 days total in the 4 months I had worked there - all within the past 2 months and excused by doctors. I was legitmately sick. I hadn't called in faking a cough. I had written orders from physicians. However, before he sent me home, I looked at the schedule for the following week to see what time I was supposed to come in and I wasn't on it. I asked Matt why, and that I had no clue what time to come in. He said he knew nothing of it, that Aaron had done the scheduling. We agreed on 12pm.
I walked in Monday afternoon, and Matt had a blank, sorry kind of look on his face... The look he gets when he doesn't want to deal with something. He took me in his office and told me that he was sorry, but Aaron had decided that they "had to let me go". I have never been fired before. Far from it. I was extremely upset and embarassed. I asked why. He said because of my unexcused absences the past 2 months. I then asked about the doctors notes and the fact that he had told me it was fine to take those days off. He then told me that Aaron had still expected me to show up to work regardless. He then said that Aaron had also told him it was because of my "bad attitude", which Matt knew was complete and utter bullshit, but I understood he saw it as his job or mine. He then told me that if it were up to him, he'd keep me, that I was a star employee but Aaron held more weight. I later found out that apparently some girl - the new assistant manager, had lied to him and told him I was walking around the gym trashing him and the whole system. She was later fired for stealing money and surprise! Lying about things. I was still sick and now really worried because I had no insurance and no job to pay my bills. It was so wrong and unfair and I had the biggest tantrum once I got outside. But just to shock them, I later went to workout with Mike once he got off work. Aaron was there and couldn't even look at me.
I now had no job, and a lot free time on my hands. I went to Six Flags Marine World the day after being fired. Again, wearing shorts I noticed that my newly aquired bruises hadn't healed and gone away, but that new ones kept appearing. They seemed to be breeding. On the 16th I went to dinner with the girls for Heather's birthday. Jasmine made the announcement that she was pregnant and I remember thinking I shouldn't be near her because I was still sick. It was good to get out and see everyone but I couldn't get over how dizzy and lethargic I felt.
The following day, my ex called me. I hadn't talked to him in awhile and hadn't seen him for about a month or two. He came over and we watched Black Hawk Down. We then found out there was a dead beached whale and drove down to the beach to check it out. As we began to walk from the car, I felt as though he was speed walking, and I grew extremely irritated that he wasn't walking with me. I then realized that it was me. I was walking in slow motion. It was just like a bad recurring dream I've had over the years. No matter how fast you attempt to move your legs - you just can't. I tried and tried to keep up and couldn't. I felt out of breath. Not breathing hard, just breathing and feeling like there was no oxygen in the air.
I was planning on going to New York the following Tuesday. I prayed that I would get better by then and thought it was a simple mind over matter thing. Friday morning I woke up feeling different and upon getting out of bed, I saw what looked like a blood blister on my bottom lip. I had noticed these sorts of marks in my mouth over the past few days but they went away. No matter how hard I squeezed or how much I rubbed, I couldn't pop it. I had also developed little pink "freckles" on my forearms. . . Petichea as we later learned them to be. My mom forced me to go back to the doctor. She had been telling me I looked gray and pale for weeks. I was born with a VSD (Ventricular Septum Disorder) - 3 holes in my heart. Not a huge deal, murmurs as some people call them. Because of this, the doctor decided that most likely I had Endocarditis (what the woman died of in "Beaches"). It wasn't too serious - I just had to have IV antibiotics for a few days, but just to be on the safe side he sent me to General Hospital for blood tests.
Driving home, my mom scared me. She told me to change and dress comfortably in sweats and pack a few essential items, just in case I had to spend the night. Packing seemed surreal. I kept telling myself I'd be home in a few hours but deep down something told me I wouldn't. I walked into General Hospital not looking forward to being there. It's the City hospital so that's where everyone with no insurance goes and there's often a long wait. Last time I myself had been seen by a doctor there was at birth. Looking back, I find this quite interesting. The triage nurse listened to my story and symptoms and told me it'd be about a half hour wait and that she no clue what was wrong but whatever it was, it'd be interesting. This couldn't be good. I considered going outside to smoke a cigarette with a weird feeling that it may be my last one. I decided against it. My energy level was extremely low and I was afraid of losing conciousness should I go outside. The whole previous week, everyone had scared me. All my symptoms led to one conclusion - AIDS. My sister kept taunting me with it everytime one of those "One in 3 Americans has HIV and doesn't know it . . ." commercials came on MTV. I was scared. I was too young to die. How had I contracted it?
Inside my room, I received my first IV, which of course hurt unbelievably. Much more than giving blood or getting a shot. Having all the saline dumped into my veins made me have to pee every 10 minutes. Everytime I came out of my room the nurses yelled at me saying I had to stay in, but wouldn't tell me why. I was extremely bored browsing through my college course catalog - I decided to re-enroll and go back to school the next semester. At one point I snuck outside to call my boyfriend and let him know where I was. 9 hours later, they decided they were keeping me overnight for tests and such. No one really told me what was so wrong that they had to keep me though. I was rolled in my bed to my new room on the 5th floor in none other than, the AIDS unit. How appropriate . . .
While trying to put a new IV in, the nurse bursted my vein and huge hematoma formed. This hurt like hell, and they decided to put me on a Morphine drip. This was my first time having any super heavy drugs and I was everyone's entertainment. Great stuff. My boyfriend came by and was a huge combination of emotions. He looked mad, worried and confused. After everyone but him left (he spent the night), he told me my parents had told him I had no white blood cells (no immune system). Why had no one told me this? I called my mom and she told me he was lying, that she had never said that. I didn't know who to believe but what he said made perfect sense. Looking back, I realize she was trying to protect me from the truth. Kellyx, my old boss, mentor and somewhat surrogate mother had called me a few days before and I decided to return her call. My boyfriend was in a weird mood and I let him sit in his corner and think. I didn't feel like dealing with his moodiness at a time like this. They hadn't yet told me I didn't have Endocarditis and I prayed that that's what it was so I'd still be able to go to New York come Tuesday. I told Kellyx where I was and what happened. She was in the city on her way to Monterey but said she'd stop in and see me. I hadn't seen her since Christmas.
Upon her arrival, I immediately cheered up. It was great having her there and she was her normal self - didn't look worried at all. I was extremely mad at my boyfriend because he was rude the whole time she was there, saying only "Oh, hi. Nice to meet you." After she left I passed out from the drugs while Mike layed across the room on the opposite bed staring at the ceiling.
From then on things are very hazy...
The next morning someone woke me up. I remember them telling me I had to have a bone marrow biopsy. What in the hell was that? They said it would be painful, but that they'd give me tons of drugs beforehand so hopefully I'd feel nothing. They had confirmed that I didn't have endocarditis. Well, there goes NY I thought. I still didn't realize how serious things were. I wasn't completely worried. I suppose in a way I almost enjoyed being in the hospital as odd as that may sound. Growing up, my sister was in and out of the hospital. She has had 4 open heart surgeries. Perhaps it was the kid in me coming out, but it was almost fun to be away from home, eating whatever I wanted, getting special attention from everyone and hopped up on morphine too? It was great until this point.
The biopsy was the strangest, most painful thing I'd ever felt. My eyes filled with tears. My vision was already blurry from the drugs and now everything was like a nightmare. I squeezed my mom's hand until it turned blue and screamed so loud I swore they could hear me on other floors. I felt as though they had removed my leg bones and were sticking metal rods down my legs, controlling them and making them jump. I was their puppet. And the bleeding, it wouldn't stop. I now had been reduced to wearing a diaper to soak it all up. They had given me Dilaudid and told me I could not get up for an hour because of it and because of the bleeding. I pressed my call button to ask for a bedpan. My nurse (an asshole) told me I didn't need one, that I could go to the bathroom to pee. I explained to him that I had only been lying down for 30 minutes and that I was so drugged I couldn't walk. He assisted me to the toilet and sat me down. All of a sudden I felt nauseous and fell over throwing up all over myself. There was blood all over the floor from newly pierced pelvic bone. I screamed for help. I hated it. This wasn't me. I'm strong. What was wrong with me? My nurse came in and I kept apologizing for throwing up, asking if he could help clean me. He threw a wet washcloth at me (literally) and said "Here, clean yourself and then I'll get you back in bed."
My mom came in, found out what happened and was pissed. She told the NP that she didn't want him as my nurse anymore and said she was going to write a huge complaint letter because that wasn't how patients were supposed to be treated. That night I had blood and platelet transfusions. The platlets helped to stop the bleeding a bit, but they kept disappearing and never stopped it completely. At this point they had diagnosed me with DIC (Disseminated Intravascular Coagulation). It's a disorder common to my type of leukemia. In DIC, platelets and the proteins that make blood clot are activated abnormally . . .Once the blood clotting mechanism is turned on in DIC, blood clots may form inside the bloodstream. These tiny blood clots can damage tissue by blocking blood flow through blood vessels. In addition, if the DIC persists, all of the blood clotting proteins may get "used up" or destroyed. This may lead to abnormal bleeding. Basically I was screwed. I had to have transfusion after transfusion . . .
I passed out and woke up to see my ex awake in a chair at the foot of my bed and my then boyfriend in a chair next to the bed, sleeping. Whoa! They had never met and wow. I didn't want to deal with it and went back to sleep. The next day Jasmine, Michelle, Heather and Regina came to visit. Regina brought a huge bouquet of flowers that I never even got to see. They were confiscated from her by the nurse as she reached to open my door. Apparently, plants carry bacteria and I wasn't allowed to have any in the room. We talked and laughed for a few hours and they left.
The next day I was sent down to radiology for more tests. Echos, catscans, the works. As I was rolled back up onto my floor from a catscan, I heard my mom. I don't remember her words but I knew she was upset. She was crying as she walked up to my bed and grabbed my hand. I propped myself up to look at my ex and Melody (my sister) and they both had sad looks on their faces. I was dying - I had AIDS. I knew it. This was the end, but no! I'd still try . . . My Mom said, "Risa don't worry, we will get through this. I know you're my fighter. You are so strong and we will fight this." Then she took a step back and made a kind of sad smile and said "leukemia" with a sigh of exasperation.
I actually let out a sigh of relief and my brain started working overtime. My relief was because this was something that could be cured, AIDS could not. What was leukemia? I mean, I'd heard of it of course, but what was it? What did this mean? I was scared and fearful yet hopeful and determined at the same time. Strange combination.
My boyfriend and I fought that night. This is where things went downhill with him. I explained to him what I had and his first response was "Well then why don't I have it?" SO many thoughts went through my mind. I thought "you idiot! Cancer isn't contagious." I also thought "How selfish are you, that I tell you I have cancer and all you can think about is yourself? And why you DON'T have it?" We argued and argued and from then on my Mom officially hated him.
The following 24 days I had a lot of "firsts". Later that night I got to ride in an ambulance to UCSF. How exciting! My sister videotaped the whole thing. I had to wear a mask because of all the possible infections I could catch. Only once I was in my new room with the door firmly shut, was I allowed to take it off. My nurse Lisa Ramsey was an angel. She sat with my family and I and explained what I had exactly (APML) and how it's normally treated. My oncologist would discuss it with me the following day.
I woke up to the floor's Nurse Practioner telling me I had to have another Bone Marrow Biopsy. Why? They just wanted to "be sure". It was so unnecessary and so painful. A few hours later, they came to get me for a central line. I had no idea what they meant. I had never heard of a central line and thought I was being taken for more tests. I was delivered to an operating room. Everyone was in scrubs and masks. They didn't tell me what they were doing, just started covering me with blue towels, face included. They had tipped my head to the left so that the right side of my neck was exposed. The towels were itchy on my face and I reached up to scratch it. One of the nurses swatted my hand down saying I couldn't touch, that it had to stay sterile. They said I'd feel a bee sting. The needle went into my neck and I screamed. They seemed to get mad at how I was reacting to their procedure. They next told me I'd feel pressure and proceeded to stick a catheter down my jugular vein. This seemed to take forever and I screamed the entire time. They then sewed it into my skin and slapped some tagaderm over it. I went back up to my room traumatized.
Later that night, one of my old coworkers from the Academy, Yves-Langston, came up to see me. While he was there, Dr. Martin walked in. He began to ask Yves and Antonio to leave since they weren't family and I said no, that they could stay. He then began to explain my options. Looking at me directly in the eye and looking to my family every now and then to answer their questions. I couldn't for the life of me understand why he was talking to me. I didn't understand anything he was saying. By the last word of each sentence, I had forgotten the first. My mom and Yves got a horrible first impression of him, thinking he was more interested in my being a research subject than saving my life.
The next day, I received my first dose of chemo. I don't even remember it. At this point they had me on a Fentanyl basil drip. Fentanyl is used as anesthesia so this was super strong stuff. The next thing I remember is being sent down to Radiology for an Echo. After 3 days and 3 doses, my heart had failed for a brief moment. They had to see what the damage was. It was decided at this point that I was far too sick and that my body just couldn't handle the 5 doses I was supposed to have.
The view from my room
Every morning I woke up with a pounding headache. The light . . .the noise - everything made it that much worse. I couldn't stand the smell of food and didn't even want to think about eating. They had neglected to give me any laxatives and because of all the pain meds, I was literally "blocked up" for 9 days. My hips blew up. I had gained about 25 lbs of water weight. I went from wearing a size 5 underwear to a 9 in a matter of days. For any pain, my nurses would tell me to "push my button" which dispensed yet more Fentanyl into my bloodstream. This did absolutely nothing for the headaches and the end result left me so drugged I could barely move or speak. My hair had started to slowly fall out but I was in denial. I was too weak to get up to the bathroom so I went without a shower for a little over 2 weeks.
Everday I got mad at my mom for opening my food trays. Even from all the way across the room, the second she lifted the lid a centimeter, I could smell the most nasty metallic scent. The nutritionist came by and told me I had to eat or they'd feed me through a tube. I cried and explained that I couldn't help it. They explained to me that I'd become anorexic and I pleaded that I wasn't doing it on purpose, I couldn't help it. My weight began to drop rapidly from the lack of eating and the chemo. All my proteins from my muscles I had worked so hard to get and mantain were used by my body to repair itself from the damage the chemo had done. I dropped about 15-20 lbs of fat and all my muscles had atrophied by the time I was discharged 3 and a half weeks later.
The headaches continued and they thought I may have brain damage and needed me to drink some dye so they could do another catscan or something. Cranberry juice will never taste the same again. My nurse came and gave me an IV saying that they also had to inject dye, but couldn't do it through my central line because of risk of infection. I got downstairs to radiology and they were complete assholes. Oh! I also forgot to mention, a few days after arriving at UCSF, I got my period. It normally lasts maybe 5 days. This one just kept bleeding because of the DIC. They had put me on birth control pills to make it stop but it didn't. Downstairs I went to pee before the procedure and was bleeding everywhere. It looked like someone was murdered in the bathroom by the time I left. My hip was still bleeding from the biopsy and my period wasn't helping either. I wasn't allowed to wear tampons because of risk of infection. I only wore pads and they were soaked within 30 minutes. I staggered back to the lab covered in blood and explained. They said it could wait and reached for my central line. I asked what they were doing, and they said "injecting the dye". I explained to them that they couldn't and that was why I had an IV. They told me not to question them and shoved the dye into my neck. 2 hours later my neck was sore and the area around where the catheter went in was bright red.
Later that night, the shaking began. I ran a fever at 104 degrees. Within minutes it jumped to 106 degrees. I couldn't stop shaking. It was horrible. Everyone was telling me it was mind over matter and to stop it. I closed my eyes and tried to focus - nothing happened. It felt as though my muscles were involuntarily clenching and releasing over and over. I tried to joke with my ex through my chattering teeth that I felt like I was getting the work out of my life. I was picturing myself all cut up the next day from all this. I opened my eyes to look at him and he was crying. I was scared. I tried and tried - completely exhausted with seemingly no choice in the matter. Finally after about an hour, the shaking lessened and eventually I passed out. What I think was the next day, I was sore, yet thankful to still be alive. I had got a bacterial infection in my central line from them injecting the dye. The solution was to yank it out of my neck. They tilted my bed back in ways I didn't even know it could move and told me to hum. I screamed while they cut the stitches. It felt as though they were cutting my skin. I later learned that they had indeed had to cut my skin, which had grown over the stitches. It felt as though I imagine acid would feel poured onto skin. They instead decided to put in a pic line. It's actually kinda cool what they do. They stick a catheter in your arm and literally thread another catheter through your vein, into your heart. This too ended up getting infected days later. The day they pulled in out, I set a floor record. It took them 26 times before they could get an IV in. My veins kept rolling and bursting. I remember closing my eyes and seeing a kaledescope of colors somewhat like the flares on top of a nudibranch. The image pleased me. It was a nurse from peds ICU that finally got it in.
I'm not sure when all the rest happened but I remember hallucinating horribly. Because of the infections, they had put me on steriods which made me nuts. I saw people in the wall. My nurse came in and asked where the bathroom was. I pointed to a portable toilet next to my bed ( though I had my own bathroom). She asked me if that was the only bathroom in the room. I was convinced it was. She pointed to the bathroom and asked me what that was. I truly didn't know. A closet? I had never been in there. They called psych down. They asked me my birthday and I didn't know. An easy question and I felt so stupid and flabbergasted for not knowing. I had been all excited about being tested at first since I love mental games. I was sent for another Catscan and nothing was wrong. I screamed at my ex that night, convinced he was plotting against me. I don't remember that part, but it's what I'm told. He couldn't take it anymore for that night and left. Later that night I woke up, and was convinced I was in an evil hospital. After not having walked for weeks, I got up, grabbed my IV pole and ran out of the room. A nurse said I had a glazed over look in my eyes and she tapped my shoulder and told me to go back to bed. I passed out.
The steriods I was on had made me nuts and it wasn't a pretty sight. They finally took me off of them but I was still drugged. Everyday my mom urged me to get out of bed and walk. I had my first shower. I sat in the shower stall with the hot water pounding down on my back/neck which had been killing me from being so tense. I felt battered and bruised as though I'd just been through a war. My body hair had grown disgustingly long and they didn't allow me to shave because of the risk of infection should I cut myself. I also started receiving shots of Neupogen in my stomach. Well, not my stomach exactly, but the little fatty tissue I had left in that area. It was supposed to help stimulate my marrow to produce more white cells and aid in boosting my immune system. My mom and I joked about it because every shot was $700, which blew our minds because in the course of my stay I had at least 12 shots of it. Later that night, it was my sister who pleaded with me to walk - for her. I obliged and when we got out into the hall I swerved from one wall to the next and these weren't thin hallways. I hadn't realized how drugged I truly was. From then on I stopped pressing my button everytime I had pain and began demanding tylenol for my headaches instead. I began to wake up.
The drugs made me a bitch . . . to everyone. No one was spared. I vaguely remember waiting in my bed outside radiology. The lights were so bright, I felt as though I didn't have eyelids. My mom and sister were with me and we were waiting for someone to bring me back upstairs. I was extremely uncomfortable and screamed about it. "Where are these motherfuckers? What the fuck? Don't they care that I'm in pain. I fucking hate this!" My sister laughed and my mom whispered sternly "Shut up. You are not the only patient here Risa. You're disturbing other people." I screamed back, "Who cares about other patients. I'm your daughter. You should care about me and that I'm in pain. Fuck the other patients." At this point an old man was being wheeled by. All I heard was this nasty snorkeling /snoring noise. I screamed "what the fuck is that annoying noise? Someone please turn that shit off" My mom was very embarassed and apologized to the people walking by. I fought with my boyfriend daily. I'd sit there for hours and tell him everything I disliked about him, every little thing that bothered me. I knew I was being a bitch but didn't care. I held nothing back. I saw it as being honest. He saw himself too perfectly and someone had to put him in his place. Everyday he came in he looked pissed. He'd crack his knuckles and clench his fists. He rarely showed an ounce of emotion aside from anger. No fear, no sadness, nothing. Just anger.
But I couldn't take the daily attitude and negativity. My mom didn't want him there while she was there because he had screamed and fought with me when I was first diagnosed. He came as much as my mom would allow, but was growing angry with the situation. My ex was there everyday and almost every night with me. My boyfriend was extremely jealous and hurt. I understand that now. I told him I wanted him to act like my friends that had came to visit. Cheerful - even if it was fake and they were shocked by how ghastly I looked. He replied with "If you want me to act like your friend, then I have to just be your friend. You have to worry about yourself right now and not out relationship. It's not a priority. When you get better we'll discuss everything."
He never came out and said he was breaking up with me and with all the drugs in my system - it didn't click. He eventually said he broke up with me so that I didn't feel obligated to worry about him at all. So I could focus on myself, and my recovery.
August 20th my counts finally came up. I once again had an immune system. It was weak - but I still had it nonetheless. We celebrated. I finally was allowed to eat fresh fruit and my nurse brought me an apple. I have never tasted anything as refreshing and sweet. I called my Mom to tell her the news and she rushed over to the grocery store to buy me nectarines (my favorite). My nurse snuck me off the floor and outside for a few minutes. This was my first breath of fresh air in 21 days. The week before I had glared at the people 11 floors below waiting at busstops. I was so mad and jealous of them. They didn't think twice about the wind caressing them. They had the freedom to do whatever it was that they wished and were taking it all for granted. It just wasn't fair. When I stepped outside it was windy and a bit cold, but I embraced it. The wind lifting my hair into the sky delighted me. It was this that I had craved.
My counts stayed stable and 3 days later I was discharged. I was actually scared to leave the hospital and had a huge anxiety attack when they told me the "good" news. I was scared that something would happen and I didn't have the security of my call button. I had grown so dependant on the doctors and nurses that I couldn't even begin to imagine living without them nearby just in case . . . I didn't even know I was being discharged. They just surprised me with it one morning. I began to cry. I wasn't well enough I thought. I took the last of my daily pills with applesauce and 30 minutes later threw it all up. I was nervous. I still can't eat applesauce a year later . . .
The ride home was scary. I had never in my life felt this fragile. It was cold outside. The breeze went straight through me. Walking down to the car I felt as though people were looking at me weird. I was 22 and walking like an 80 year old. The car ride did nothing but make me nauseous. The bumps from the potholes hurt me. I no longer had the fat to cushion my body.
Arriving home I was obsessed with looking at myself in the mirror. I hadn't seen myself in nearly a month. I was disgustingly skinny. My ribs stuck out in the front and back and my hip bones were more prominent than ever. My boobs had gotten slightly smaller yet looked humungous on my newly tiny body. All of my muscle and most of my fat was gone. It took me 5 minutes to walk up our 13 stairs. My muscles had atrophied from lack of movement. I immediately went looking for my nose rings. They had made me take mine out along with all of my earrings during my hospital stay. My piercing had partially closed. Being used to enduring pain the past month, I figured that popping it back through couldn't hurt that much in comparision, so I did it. Looking back, it was a stupid thing to do with such a low immune system but whatever.
From then on out, for the most part, I got physically better. I spent the first month mainly in my mom's bed. My room is downstairs while the rest of the house is upstairs and I was too weak to climb the stairs everytime I had to use the bathroom. I had a doctor's appointment every week and that was my big outing for the most part. The first 2 weeks were tough. I saw Mike for the first time and obsessed about my weight to him. And my hair. It was coming out quicker now yet I was still in denial. September 16th I went to Norma's competition and saw everyone for the first time. I had no energy by 8 oclock and asked Mike to take me home. The following day I decided to try the gym again. Mentally I was still in workout mode. I thought I was stronger than I was. It killed me to be tired so quickly and to lift half the weight I used to.
I had been going to the clinic at General because I hadn't yet been approved for medi-cal and UCSF doesn't see patients with no insurance. Once my medi-cal got settled I began to go to UCSF instead. At this point, when my oncologist saw me, he restricted me from using the gym. Too many germs. He said to wait until December after my last round of chemo. No one was sure when I was going in for my next round and it was nerve wrecking.
We went shopping for wigs and did research on healing meditation and imagery. I took a yoga class for patients and tried to calm myself. My second round began on October 8th. It was a very different experience. I was only there for 3 days and for the most part I was sober. Also, because I had somewhat of an immune system, I had to share my room. I was given a different type of chemo (daunorubicen) which made me sick, but wasn't as bad as the previous one (idarubicen). I still went to the clinic once a week but was getting better and better. I was bored. I had good days and bad days and couldn't work, go to school or to the gym. I went on lots of walks and slowly got back into being online. I tried to read and couldn't focus. I'd read a few pages a day of Lance Armstrong's autobiography. Although it wasn't written by him, it gave me hope. To read about everything that he accomplished after the fact and how much stronger it had made him ignited the fighter in me even more.
My "boyfriend" and I were drifting apart. I spent days sleeping and felt crappy so I didn't always call him. I didn't have the energy to speak. People don't realize how much energy is required to have a conversation. I saw him on October 30th. We spent the day at the beach and it was just horrible. We fought the entire day and ended up getting up and just leaving. That weekend there was a competition in Sacramento. I couldn't go because I had plans already. My third and final round of chemo.
My last three days in the hospital were as great as they could be considering the circumstances. I had a wonderful roomate and my mom was there a lot. My uncle came by to see me finally 4 months after the fact but whatever - he still came. November 6th - The last dose left me sick but thankful to still be alive to feel sick and relieved that I was done. My 23rd birthday was on the 18th and it was probably the best one yet. My mom and my ex threw something together last minute. My closest friends; Jasmine, Michelle, Sabrina, Regina, Tiffany and even my ex-best friend Sandy came by. We ordered pizza and drank wine. I was allowed one glass to celebrate since I was still taking Oxycontin.
December came and I had made a new friend - Ashley. I needed her and she needed me. It worked. I needed the positivity in my life that she brings and she needed me as a reminder to stop stressing over the little stuff. I went out for the first time on Regina's birthday. Not just "left the house out", but out to a club. It was a last minute decision and I was self concious the entire time. At this point I had accepted the fact that my hair was falling out and it was extremely thin. I had half of one drink and it was too much. My tolerance was gone. Which I found quite amusing since I could handle 40+ milligrams of Oxycontin, yet less than one glass of alcohol had me tipsy. Christmas came. I got what I had wished for and was happy . . . my hair had started to grow back. Another "milestone" as I saw it. I figured if I could make it to Easter I'd be okay. Jasmine's babyshower was after Christmas and I found myself slowly making my way into the world again. I was getting better. I had my fourth biopsy.
At this point I felt some pressure. The spring semester of school would be starting and everyone around me thought I could just jump into life again. But my mind and body weren't ready and people didn't seem to understand this. They figured I'd be even more ready and raring to go after everything I'd been through. Shortly after New Years - January 7th I believe, I went back to the gym. I say this as though it were an "event" but in actuality, for me it was. Though I had been given the green light to return in Decemeber I stayed away because of the boyfriend that broke up with me in the hospital who frequented the gym. I just couldn't handle seeing him. I realized I had no choice though. After months of being super skinny and doctors telling me to eat whatever wanted - just eat, I had gained weight. The last dose of IV chemo had worn off and my new habits of eating everything I wanted finally caught up with me. The oral chemo pills which I take started to kick in to help me gain yet more weight.
Going back was hard. To face the same assholes who had fired me for being sick. And I was scared. I was afraid to push myself at all. Lifting weights was fine, but I was afraid if I did too much cardio I'd have a heart attack. I figured my heart was still weak from the chemo. This tore me apart. I'm naturally competitive and athletic and I wanted to push myself as Lance Armstrong had done, especially that I no longer smoked. I worked my ass off. Since I had nothing better to do with my time, I went everyday for hours. I started to gain more definition but the fat wouldn't come off. Very frustrating to say the least.
January 9th. My doctor's appointment. The doctor's appointment. Everyone around me was worried. This was the appointment that would tell all. My biopsy results were back and I'd find out if I was in remission. I remember not really understanding the hype everyone was creating. I didn't see the big deal. I was already taking oral chemo meds, so if it came back I just had to get another round of chemo - been there done that. Luckily, the results were negative. It was official.
I had developed a much better relationship with 2 women from the gym, Gemma and Norma. Gemma's birthday came and that was my first "real" outing. (The last time I hadn't been prepared) I had come to accept my hairloss and started wearing hats everywhere. Gemma bought me a hairpiece to add to my thin pony tail. We had a good time. But towards the end of the night, I was faced with what I now refer to as "the question". Some guy started talking to me. After a few minutes of conversation, the question was asked. "What do you do?" A seemingly innocent question. I considered lying and telling him what I used to do, and realized there was nothing wrong with telling the truth as real as it is. "I don't do anything. At the moment I can't." Then comes the "why?" "I'm a cancer patient. I have leukemia." He didn't believe me because I had hair. I replied that yes I had hair because I bought it. I think I shocked the shit out of him. I shocked myself a bit too because of how open I was being.
I decided that I would finally take the trip I was supposed to take in July. To my second home, New York city. My friend Gigi was going to fly to San Francisco for a few days. We'd go to the Britney concert, then I'd go back to NY with her for 2 weeks. I ended up staying for 3 weeks and it was one of the best trips ever. It was also very trying. To look at me, you'd think I was healthy. Half the time I myself forget. Too many people had unrealistic expectations of me. I don't think most people get how badly chemo screws with you. Though I went out, I slept a lot and had to cancel plans with people because of my lack of energy. The only person who I felt truly understood was my bff/"wife", Liz. She took care of me. I went to visit my Aunt and her girlfriend in Boston. That weekend was my saving grace. Though I love all my friends and know they mean no harm, it gets tiring explaining my situation and why I can't do everything I used to be able to do. My Aunt and her girlfriend were both cancer patients so we were all on the same page.
When I returned to SF, I had yet another bone marrow biopsy. This one left me unable to walk for a few days and I began going to the gym less and less. I spent most of my days sleeping and on weekend nights I'd go out with Gemma. I bought another plane ticket to return to NYC in June. Before I left, my oncologist warned me that I might get sick because my immune system's memory was gone. Every virus I came into contact with I would contract again. My first 2 weeks I was there I was sick. I thought it was just a cold and that my body would fight it. I finally went to the ER where I was diagnosed with an Upper Respiratory infection. Great. Vacation ruined. But it wasn't. I still got to see people and relax which was my reason for going. I was asked "the question" quite a few times while I was there. Getting sick reminded me once more that I wasn't yet done with all of this.
On my last day there, I had an anxiety attack. I suppose I'm scared about returning to "normal" life. Scared about having to go on interviews again and explaining the year gap in my resume. Scared that employers won't hire me because I'm an insurance risk. Mostly I'm scared of failing. I still feel everyone's expectations around me and I have expectations of myself. Now that I've "overcome so much" failure in any form is not an option.
In 6 days, it'll be my year anniversary and it's been one hell of a ride. I'm not through with all of this yet but I'm getting there. I fight my energy levels everyday and still am in great pain from the biopsies. I will continue to have chemotherapy (in pill form) until September. On July 28th 2008, I will officially be cured of this disease. In many ways I am actually greatful for what happened and thank the disease, as awful as it may be, because I now have a new outlook and a greater appreciation for life.
Please go visit http://www.lookgoodfeelbetter.org and if you can donate! If you know someone going through chemo, this is an amazing program they should know about so spread the word! :)