Thursday, November 26, 2009

I was bald....

...and I was sort of freaking out. Chris drove me back up to school, it was a Monday. I am the kind of person who gets to class super early, I hate being late. Well, going back to class as a newly baldheaded person wearing a wig weirded me out. Mostly, I felt awkward because I was wearing this wig, and it wasn't the fact that I was bald, it was that I knew my "hair" was fake. I wore this brown wig. The color was a few shades darker then my original color. It had bangs, I never did. It was longer and had a slight waviness to it. I felt really fake. I delayed leaving my apartment because I didn't want to see every one's reaction to my hair. Would they act like it was normal? Would they stare? Would they avoid me? Who knew, I didn't want to deal with it. I finally manned up and went to class. I walked in on the 8th floor through the shop. I remember I saw some friends and I immediately teared up. They obviously knew I looked different. They complimented, and one guys said he swore he thought it was my real hair. I don't know why I continued to cry. I walked through the shop looking at the floor, passing more people, feeling awkward. I got into the classroom and tried to make it look like I wasn't crying. I couldn't fool anyone, but everyone made me feel better by saying they loved the look, and it honestly looked real. Like I said early, I'm not a vain person, but I felt so fake. Whatever. I wore it. When I left school that day I was scared my wig would blow away in the wind. I had to wear a hat over it to keep it from flying off. The wig was SO hot, SO itchy, not comfortable. That night I refused to show my bald head to my roomies. They kept reassuring me that I couldn't possibly look as scary as I described myself, so I finally took off the wig.

What a relief.

It was pure comfort not to have it on. I showed them my bald head, well, it still had a tiny layer of peach fuzz. After I showed them I still felt embarrassed, so I put my famous blue hat on. We watched Project Runway, and life seemed to continue. I got through the next few days, and started to get used to the wig. It wasn't easy, but I managed. Anyway, I was really excited because my old roomie, and wonderful friend, Ashley, was coming in from New Jersey to visit me! She got in @ O'hare, and Chris and I went to pick up her and her sister, Stef. I was so excited to see them! It was St. Patty's weekend, and we were going to hang out alllllll weekend. We hung out that first night. Even though I was sick, I still tried to lead a normal life. The next day, me, Ash, Stef, and my sister Meg, oh and Chris, went to Giordano's in Roger's Park. We got pizza, it was great. Later, the girls all stopped by Ash's friend's place near Roger's Park and hung out. Later that night we were going to go back to my apartment to hang out. It was a Friday night. I remember it being freezing, what else would you expect for Chicago in March? I begged Chris to come pick us up so we wouldn't have to take the bus/train duo home, and of course he said yes. We parked in Little Italy by my apartment and walked up the stairs to our front door. I was the first one to open the door, and on my entrance I was SHOCKED. I walked in to a HUGE crowd of all my friends wearing the craziest wigs ever. Chris and Meg had thrown me a surprise wig party. I was in total shock. I had no. idea. at. all. All my friends from Columbia came. All my friends from back home came. It was pure happiness. That surprise then and there made me feel awesome. The night was great. We all traded wigs throughout the night, I had a pink one, green, yellow, short, blond, dark, mullet, spiked, curly...every kind of wig you could possibly imagine. It was great. I no longer felt embarrassed. Someone even showed up with a wig-mustache. The night was perfect. I never thought of celebrating something like that, and I guess you wouldn't call it a celebration, but it was fun. We made my situation as fun as it could be. The next day was St. Pat's day. We went to the parade and hung out all day. I had the best time. I didn't sit around my apartment feeling sorry for myself. I led my life in the most normal way I possibly could. The next day I was talking to my mom on the phone. She said she had talked to her friend on St. Pat's day and she was telling my mom how she couldn't take treatment anymore (I'm not sure what kind of treatment and for exactly what cancer). It broke my heart, but my mom told me that she told her friend to be strong and optimistic and you'll be able to overcome this. She told her friend that her daughter was out at the parade, enjoying life with her friends and not letting the disease consume her. I would never judge anyone for feeling bad or needing/wanting sympathy through treatment, but my mom's statement made me feel really proud of myself. I'm not saying it was easy, I'm saying I a huge support system alongside which enabled me to live my life to the fullest despite my disease. I took excellent care of myself, but I didn't sit in bed all day expecting sympathy, and I truly believe my optimistic attitude it what got me through everything.
...Times were not always peachy. Shortly after St. Patty's day passed, Ash & Stef went home, I started to feel really sick. I started to feel like I was out of breath, and honestly it felt like I was drowning. I couldn't catch my breath, and I couldn't walk more then 3 steps without gasping for air. At first my oncologist thought it was anxiety, as did I. I am somewhat of a nervous person, and I do worry a lot, so it seemed like the right diagnosis? I continued treatment for the next session and continued with classes, but I kept feeling worse and worse. It was Easter weekend. Saturday night, April 6th. My mom and I were at home coloring eggs. I could not breath. She said screw it, we're going to the ER. She took me to St. Joe's, and luckily this time I was admitted a lot faster then the previous experience with my back. I went into the little room with curtain walls and my mom and I watched crappy TV. Actually, I think Jaws was on. I was hooked up to all sorts of machines, and we thought it was funny because whenever something exhilarating would happen, my heart rate would rise and the machine would start to beep....hehe :) Around 1 am I still hadn't been brought to an actual room, and I couldn't stay awake. My mom felt horrible leaving, but I convinced her to just go home and get some rest. The hospital is always lonely. The next day was Easter Sunday. I didn't even know when I'd get out, but I knew I wouldn't get to see any family, we probably wouldn't make an Easter dinner, and my dad was in Florida still, alone. It was pretty heartbreaking. I was finally brought to a room around 3 am. I was freezing. They kept piling on the heated blankets, but I couldn't warm up. To be honest, I can't remember the tests they did. I did get x-rays, and I think a pet scan, and I know I had this breathing test I had to do, and failed miserably. Basically the doctor come to the conclusion that I was developing lung disease.
I pulled this from a website for a better description of the drug and its side effects:
Patients who receive certain forms of oxygen therapy while taking bleomycin or who receive anesthesia while taking bleomycin are at increased risk for developing serious lung problems.
Patients given bleomycin may develop an acute allergic reaction that may be fatal in rare cases. Therefore, a patient should only receive a small test dose of bleomycin the first time the drug is administered. After this initial dose the patient is observed carefully for one hour. Assuming no further problems appear, the patient may then receive a standard dose.
The likelihood that lung damage will occur increases if a patient receives more than 450–500 units of the drug during an entire lifetime. So, it is
prudent to limit the amount of this medication given. Furthermore, it may be unwise to give bleomycin in regimens containing cyclophosphamide, as this combination also increases the likelihood that lung damage will occur.
Side Effects
Lung problems are a serious side effect affecting some patients who receive bleomycin. While lung problems can appear regardless of how much of the medicine is given, they are more likely to appear if a patient receives more than a certain amount of the medicine—250 units according to some authorities and 450–500 units according to others. The appearance of a
dry cough may indicate the development of lung problems. Lung damage can be assessed by measuring the rate at which the patient is able to transfer gas across the lung membranes (DLCO or diffusion lung capacity).
Other side effects of bleomycin may include skin problems and alteration of skin color, allergic reactions, Raynaud's phenomenon, and hair loss (
alopecia). In addition, headache, and nausea and vomiting may occur. Rheumatoid arthritis may worsen during bleomycin therapy. Patients with testicular tumors who receive multiple chemotherapy agents including bleomycin may develop Raynaud's phenomenon and cardiovascular disease. Raynaud's phenomenon, which affects the fingers and toes, may involve pain, pale color, and abnormal sensation (for instance, burning or prickling).
Approximately 1 out of every 100 patients who takes bleomycin experiences a reaction that involves chills,
fever, wheezing, low blood pressure, and mental confusion. Unlike many other cancer drugs, bleomycin is not likely to cause any damage to the bone marrow.
Patients may be given steroids before bleomycin therapy is started in an effort to reduce the side effects of the drug.
I guess I was a rare case who did experience this awful side effect. I left the hospital on Easter Sunday, and was given a huge list of drugs to bring to the pharmacy. I needed a nebulizer, and we couldn't find anywhere that had them for rent on this holiday, and I needed it then immediately. Luckily my mom sort of knew the pharmacist at the Jewel in Joliet who helped us out. He found us one to buy so we didn't have to rent. It is this little machine where you put the drug in the top tube thingy....and you turn it on and I guess it pulls the medicine inside you like a vapor. It helped. I had an inhaler, a nose spray, pills, two nebulizer drugs, and needed to get an oxygen tank. This medical company came by with lots of stuff. First, there was this HUGE machine which closely resembled R2D2 (if you're familiar with Star Wars....). It was my own personal oxygen machine. It pulled pure oxygen out of the air at whatever purity percentage you set it at. I believe I had to set mine at 80%. I had a mini tank to carry around with me at all times, that could be refilled with R2D2, and a 3 foot tall larger tank that was for emergencies- like if the power went out and I couldn't fill my small tank. Chris was so sweet and hauled all this equipment up to my apartment. R2D2 weighed a ton, and we had about a 20 step walk up to our front door @ my apartment. Ohhh, I forgot to mention that Easter never really happened that year. My mom and I were so tired we didn't have the energy for any family traditions, like church, Easter Baskets, Dinner...etc. :( Chris dropped me off that night, and I was sad for him to leave. I felt helpless, and I could not breath. I continued to take my meds, and as soon as Chris left, I got extremely nauseous. I ran to the bathroom and could not stop throwing up. I didn't know what it could be because I hadn't eaten that day, but it felt like food poisoning. I called my doctor and we realized that I was sensitive to Augmenten, the antibiotic I was taking. Great. I still had to take it. I felt extra horrible. Puking and not being able to breath sucked.
I had class the next morning at 8 am. I still went. I didn't miss any. I hid my oxygen tank in my hot pink JanSport backpack. I was so embarrassed to have to use it in front of anyone. I walked up the stairs out of the blue line into the thin cold Chicago air. I almost passed out. I had to stop and bust out the tank. I hated it. I had this huge cannula which I had to stick inside my nostrils and wrap around my ears and string back into my backpack. I thought I looked like a freak. It also hurt. It really dried out your skin near the cannula, so my nose was all chapped. Once I got near my building, I took it out and hid it back in. I went up the the third floor. I couldn't walk, I had to take the elevator. Maybe it was just me being paranoid, but I swear I got dirty looks for riding the elevator to the third floor. That is what lazy people did. Also, everyone at Columbia smokes. The block leading up to the entrance to my building is a cloud of smoke. It's disgusting. I couldn't stand it, especially when my doctors STRONGLY advised me to stay away from any smoke. I got upstairs and of course, couldn't breath. I had to bust out the tank again. Great. I remember tears welling up because everyone was watching out of the corner of their eyes. I hadn't told anyone in that class what was going on. It was this ridiculous computer gen-ed that I had to take as a requirement from Columbia, so I didn't know anyone in it. They saw, and knew something was up. I finally felt like I had to tell my teacher. He was cool about it. A couple people came up to me on the break from class to ask if I was ok, and I just told them. They gave me the saddest looks. Ok, maybe I looked like I was really sick. I had no eyebrows, pale skin, baggy eyes, a crooked wig, and I was hooked up to a tank. I guess now I understand why they looked at me like they did. Ok, I got through it. My next class was Form Analysis on the 8th floor. I took the elevator up. I busted out the tank again. I felt no shame. This class was full of all my friends. I knew they wouldn't make me feel uncomfortable. I remember my teacher actually joking and asking if he could have some oxygen from my tank, and he called me awesome cancer girl. Maybe some people would be offended by that term, but it made me laugh. I was very light-hearted about cancer lingo. I wasn't touchy, and definitely made the situation as fun(ny) as possible. I was able to joke. Laughter really is the best medicine. I got through that day, just like I got through every other day. After class was over, Chris and I had tickets to home opener for the Cubs. He didn't want me to go, but I insisted I would be ok. It was snowing, freezing, and somehow I thought I'd be ok. I did not tell my mother I was going, I knew she'd freak out. Now that I look back, it probably wasn't the best idea, but it's passed....We took the Ashland St Bus down to Addison, and then got a cab to take up to the park. Chris wrapped me up in tons of blankets and get me hot cocoa. It was so much fun. I went home and went to bed. I was exhausted...............

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