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...............

Friday, November 6, 2009

January.... a little hazy.
(when I said I had my bone marrow biopsy the week I started chemo, I was wrong. I don't know when it was, but it was a couple sessions in)
I also forgot, I have some pics from Florida. Here is Chris & I. This is pure happiness.

January 2006.
I had just gotten used to my chemo treatment, or as used to it someone can get? I finally had a consistent nurse, Jamie. Jamie was a.w.e.s.o.m.e. Remember how I told you about the "butt-burner" anti nausea med? Well, Jamie made it hurt a lot less....She "pushed" that drug through my IV so slow that I didn't really feel a thing....that much. She was very patient, and I was very thankful. I got into a routine, I remembered what was next. I remembered to eat, I remembered to drink. Speaking of drinks, the chemo room at JOHA had a fridge stocked with lots of fun stuff, including juices, sodas, water, and even a hot chocolate machine that also made fun coffee drinks. There was oatmeal, pretzels, and soup. It was nice, but my mom would usually go to Babe's hot dogs and get us soup (it was still freezing out!! brr). We made it the best it could be, and Jamie certainly helped.

The chemo room at JOHA was huge. I swear there were almost 30 chairs in it. The chairs were this hospital-y pink and blue. They all reclined, and had a little plastic tray on both sides of the arm rest that would extend out for drinks/magazines, etc. They were ok....I could of used a lazy boy...I felt bad for my mom and Chris because they had to sit in the uncomfortable "waiting room type chairs". yuck...but they never complained once...or maybe they did, but I was usually asleep. I never knew chemo was so "public". I always thought you'd go into some scary dark room away from everyone. It was open, lots of windows, everyone hanging out together. Most everyone at the facility receiving treatment was a lot older than me. I actually only saw about 2 young people ever receive treatment. Lots of young people came in to hang out with their parents/grandparents while getting treatment. I'm not going to lie, I sometimes wished I could switch places. I didn't want to be the one in the chair, I wanted to be the one waiting....sorry for the dismal-ness, but I'm speaking the truth of my thoughts. But I somehow knew I would be ok. It didn't make it any less scarier, but I told myself that there was no way I could stay sick. I stayed positive, mostly. I remember it was the third or fourth treatment in when I would BEG Chris to not make me go. It was always the night before, so a Thursday. Every Thurs I remember going to Chris's and we'd rent movies. After the movie would start to beg and haggle. I was serious, but Chris never gave in. He always talked me into agreeing to go. So my third treatment passes...and my fourth....and finally, I get to go back to school.

This was so exciting. I missed my classmates SO MUCH.

Chris drove me to my apartment on a Sun. night. I got back to my normal life. I hung out with my roomies that night. I was really excited to go to class the next morning. I remember getting there fairly early. It was freezing that day, and very snowy. I remember walking out of the Congress Blue Line stop, walking down Harrison to school. It was so good to be back. I remember my cheeks turning bright red. Whenever I get really cold my cheeks flush a bit. I hate it. So I got into the back elevator and took it up to the eighth floor. I saw all my friends in the hallway waiting to get into class. I was crazy happy. I got lots of hugs. It was great. All my teachers told me that if I needed anything they would be there for me. The head of the product design department at Columbia actually emailed me right after the accident/diagnosis and told me that he would be there to help with anything I needed. The support was nice. I was just really happy to go back and show everyone that was still me. I wasn't a sickly fragile looking person...yet. It also gave me a personal happiness because I was proud of myself for not letting the cancer overcome me. I still didn't quite know how to deal with it, but Chris really kept me optimistic when I was feeling low or weak.

School went on. I had to finish all my previous semester's work in this new semester. I was a little overwhelmed. Actually I was a lot overwhelmed. Finals in the product design major aren't like regular finals. They're huge projects. You have to compile you whole semester's worth of work, create a design brief, scan in a million sketches, render a million models, make a million sketch models and CAD models, and make a final model. It's a lot of work. I was freaking out. Luckily, like I said, my teachers were all patient.

So this takes me to about February-ish, I think. I was very happy because I still had hair. Doctor Siv told me I'd be bald by January. I wasn't. I always checked, and by always, I mean every hour I'd pull at my hair to see if it wouldn't fall out. I convinced myself it was falling out, but I know now that it wasn't, I was just being crazy. I remember one night this band was going to hang out at some bar in Chicago. Meg and I decided we must go. We got ready and headed out. I loved going out and hanging out. I loved that people didn't know I was sick (strangers I guess, but still...). We went to some "lounge", Cabaret, I think. It was fun. Some guy who looked like Chandler from Friends was hanging around us, a little creepy. When we decided to leave we gathered up our stuff and made way to the #29 state st bus stop. It was really cold, and I remember Meg made me wear her hat. When she bought it I was always eyeing it. I knew she hated it when we borrowed her stuff, (she usually wouldn't get it back), so I never wore it. That night though, she let me wear it. She was very protective. She said I'd get sick if I didn't. It was thoughtful, and needed, because I obviously hadn't thought about bundling up. I was always at risk for anything, and any little cold/virus could send me to the hospital.

The next weekend I got that same hat. I went to Ragstock on Belmont Ave and got the blue one. I wore it all the time. It was good timing because my hair was starting to fall out. This brings us to about my fifth treatment at the end of Feb. I definitely knew it was falling out this time. Clumps would fall out at one time. I would wake up and have this layer of hair on the top of my pillow. I would take showers and chunks of hair would fall out. It was hard. I'm not a very vain person so I was prepared for this, but no matter how prepared you are, you can't prepare yourself for this. It's hard seeing your hair fall out. I had this white hoodie that I loved. The inside of the hood was this fuzzy material. I wore it all the time. My hair would fall out and entangle into the lining of the hoodie. I couldn't get it out. It was so hairy I couldn't wear it any longer, not matter how much I washed it. :(

I started to shampoo my hair less. I thought I could preserve it. It never got dirty, but I couldn't make it look nice. This is where that hat came into play. I never took it off. It was really warm, and sometimes too warm when I was in class, but I didn't care. I didn't have to deal with my hair. Chris had been preparing me all along for when I would have to shave my head, but I kept putting it off. School went by, and I'm proud to say I didn't miss one. class. As bad as I felt from that wretched Nuelasta shot, I pushed through.

Doctor Siv gave me a couple pain killers to assist with the pain. First he gave me vicodin. It made me really sleep, and a bit nauseous. I didn't notice it helping any with the bone pain. Then he gave me darvocet. That made me feel even worse. I couldn't stomach any of them, so I stuck with good old ibuprofen. It worked very little, but better than the pain meds. I luckily didn't experience all of the chemo side effects. This is a little explanation I pulled from a website about ABDV Chemotherapy:

The ABDV regiment is usually administered in four-week cycles. The four drugs are administered intravenously on days 1 and 15 of each cycle, with the remaining days left for patient recovery. Dosing differs based on a person’s body mass.

Adriamycin side effects
Adriamycin can cause many side effects, including nausea, alopecia (hair loss), and neutropenia (depletion of white blood cells). It can also cause heart problems, such as arrhythmias, in some


Bleomycin side effects
Bleomycin can cause a fever, rash, alopecia, and Raynaud’s phenomenon (a discoloration of the fingers and/or toes). However, the most serious side effect is the occurrence of pulmonary fibrosis, which impairs the lungs.

Vinblastine side effects
Vinblastine can cause neutropenia, ulcers, blisters, and nausea.

Dacarbazine side effects
Dacarbazine causes severe nausea in some patients, as well as neutropenia, headaches,
fatigue, and diarrhea.

Other Side Effects and Common Medications
Chemotherapy can cause frequent urination because of the high amount of fluid entering the body intravenously during treatment. Catheters might be used to allow for stronger doses in some patients. Extra fluids should be consumed during treatment to help prevent kidney damage.

Treatment can also cause constipation; if this occurs, your doctor should prescribe a laxative.
Anti-nausea medicines, such as
Zofran or Kytril are usually given during chemotherapy treatments to help with side effects. Pain relievers may also be prescribed.

All chemotherapy agents can cause birth defects in babies conceived or carried during treatment. There is also a risk of infertility. You may want to discuss your options, such as sperm banking or egg harvesting, with your medical team prior to starting treatment.

I only experienced a few of those side effects. I was very tired, all the time. I ALWAYS felt nauseated to the extreme, but didn't really throw up much, only twice actually. My fingers turned this really dark yellowish color. (my hands looked really silly). I always had a very strong metallic taste in my mouth, it was disgusting. Lastly, I experienced the hair loss. Actually, I did experience the pulmonary fibrosis as a side effect from the Bleomycin, but I'll get into that later. I dealt with everything ok. For some reason also, my senses were all heightened. I could see better, taste better, and most of all smell better. It wasn't so good though. Certain smells made me want to puke, and everything smelled differently then they ever had smelled. It was way stronger, and not always good. I felt even sicker. Luckily, the doc gave me some medication I could regularly take to regulate nasuea. It was called compazine. I carried the bottle around with me everywhere. I guess it helped, but I think half of the things I was feeling were psychosomatic. After a while, anything that I got used to during chemo made me sick. The texture of the compazine pill started to gross me out. I didn't even want to take it because it simply reminded me of being sick, how screwed up is that? I manned up though and took it, mostly.

So I'm dealing with all these crazy side effects, and trying to concentrate on school, and trying not too look so pale. I noticed my skin started to look washed out. I was worried I would start to look sick, and that's not what I wanted.

One day I'm walking to school. I am right underneath the green line tracks at Harrison and Wabash. This salon salesman comes up to me trying to sell me some salon package. He looked about my age. Have you ever been stalked by the magazine salesmen in the Target parking lot? Well this guy was that guy's brother. I usually always give in and buy whatever they're selling me. This time though, I had the confidence to say no. So I said no. He kept following me. He followed me to my building. He wouldn't take no for an answer. I finally said, with tears in my eyes, "I'm going through chemo and my hair is falling out. I can't go to a salon and get it done, don't you understand!!!!". I said this in a halfway mean way. He apologized immediately and then some. I said sorry, but now maybe you'll listen to me. I was a bit proud of myself for saying no to a salesman, but of course, if you know me, you know I felt SO BAD for yelling at this guy.

After my sixth treatment my hair was shot. I had two bald spots, and a very thin layer of brown hair. I never took my hat off. I couldn't wash it. I was scared I would wake up bald, but still took pride in the little hair I had. It was March now. March 10Th. I had had my last treatment about a week prior, on March 2ND. I was at Chris's that weekend. He brought me to the upstairs bathroom and told me it was time. Before I forget, I want to tell you that the week before this happened, he shaved his entire head. I had longer hair. He said if the Bears don't win the Superbowl, he'll shave it, but he said he was really shaving it for me. I wouldn't be the only baldy. He took out his razor and told me I needed to do this. I was crying, pleading not to. He said "Kate, it's all falling out. You'll feel better, I promise". He knows me so well that he knew I had accepted it, even though I don't ever remember giving him the ok. He first cut my hair. It had been longer, almost to my shoulders. I didn't look in my mirror. I saw on the toilet and faced the wall. Tears were falling from my eyes. Chris is very brave. He made a few cuts and I started to cry harder. He said with a little smile, "Kate, look!". He had cut a mullet into my hair. I got up, saw, and started crying and laughing at the same time. It was really funny. Even though I was still crying, I couldn't stop laughing. At that moment, I accepted that I was going to be bald. I shaved it all off. I refused to look in the mirror. I sat there looking down into my hands, embarrassed of what I would see. I looked, but quickly looked away. I went into Chris's room and crawled underneath all the blankets. I thought I could just ignore it for a bit before dealing with it. When I finally went downstairs I put the good old hat on. Chris's parents didn't even know I was bald yet, or they were really good at pretending they didn't hear my crying like a baby. :) I watched TV with his family, and then retreated into the other room, still freaked out. I sat on the bottom of the stairs. I remember some members of Chris's family walking by. I said to them "I hope you guys aren't offended if I don't wear my hat". They said something along the lines of "oh my gosh, not at all. You look fine". I was calmed down, and happy that I wasn't scaring anyone away. I made myself show other people, and Chris's family is like my second family. I knew that they wouldn't make me feel stupid/ugly/bald.

They made me feel like me still, so I stopped crying....

Thursday, November 5, 2009


....and I feel like my memory is failing me right now!

One big thing I forgot to mention was my family! Right before I got into the accident, my dad resigned at his job and decided to move to Florida, where he had a new job (less stress). Well, the market was beginning to crash. My mom put our home up for sale, we had lived there since 1989 I think. Well, my dad went down to FLA to start @ his new job. My mom was going to stay back home til our home sold. My mom just recently reminded me of some key dates: November 29th was the day my dad moved to FLA, and December 10th was the day I got into the accident. As you can see, the situation kind of sucked!!! My dad was in FLA when everything happened, which made it really hard for everyone, including him. My mom still kept the house for sale, but said if it sold, she would not leave for FLA til I was ok. She is the best.

Back to where I left off at now....

So I had just had my port implanted. I couldn't move my arm. Actually, I couldn't move my entire right side, and my back was hurting bad still, so I really couldn't move at all. I couldn't shower because I was covered in bandages and stitches and all that fun stuff. The night after my surgery, which was Tuesday (I believe Dec. 19 2006), my boyfriend's family went out to dinner. I think it was for Chris's little brother's birthday which is on the 10th. Well anyway, I wanted to go so bad. I hadn't really left my house, and I wanted to get out. I remember my hair being really nasty because I couldn't shower. My mom went to Jewel and bought this stuff called "psssst". I laughed. Her and Meg (my sis) sprayed it in my hair, and it looked clean again! Then Meg had to help me get dressed. I remember being really picky because I didn't want to wear anything that showed this HUGE bandage on my upper chest, but whatever we tried still showed it. That made me sad, but Meg was awesome and really dressed me up. Chris picked me up that night and he brought pillows in his car so I had something to rest my arm on, and also to prop me up. He was so sweet. We went to On the Border in Naperville, a Mexican restaurant. I was so excited to go out, it was hard to eat though! I got tired really easily, but that night was awesome. I took it easy for the next two days, because on Friday the 22nd, my mother's birthday, I had my very first Chemotherapy appointment scheduled.

I was freaked out. I had had two surgeries in the past 5 days, and then I had to start Chemo!? All I kept thinking about was some movie I saw on Lifetime, which kept bringing these visions of pale bald women, very frail. I was scared, and didn't know what to expect.

Well, the day before I had my chemo I had to get a bone marrow biopsy, just to make sure that the cancer hadn't spread there. I went to JOHA, Joliet Oncology and Hematology. I went into this little room, Chris and my mom by my side. When they take a biopsy, they take it out of a bone near your side, low near your hip/butt area. I was on this table laying on my side. I was drugged up, and had some topical anesthetic on my skin. I couldn't look at the needle. From what Chris and my mom told me, it was huge. They started hammering it into my side. I swear I started crying. Either the drugs weren't working, or I needed more. They gave more anther injection of pain meds. I felt really dizzy. They went back to the biopsy, and started pounding this needle into me. They had to puncture my bone. It still hurt. I could feel the needle in me. It got so bad that they had to stop. They didn't get the sample. (Luckily the surgeon who did my back surgery had gotten some marrow, and tested that, it hadn't spread). I think they wheeled me out in a wheel chair. I couldn't walk. I hurt, but was numb at the same time. I was scared. Chris and my mom told me that there was a lot of blood. The needle was about a foot long. Well, I survived that, but did not look forward to the next morning.

My appointment was at 7am. My mom brought me. I didn't eat that morning, I didn't know what I should've done. I got there and the nurses were very nice. They asked if I ate, and I said no, I didn't know if I could. They said "yes! The more you eat the better you'll feel!" This was 3 days before Christmas, so there were cookies EVERYWHERE. The nurses brought me cookies, and I had them for breakfast. They had to remove the bandage from my port surgery early to access my port. I still had stitches. I was scared to see the scar. I was crying. I'm sure my mom was terrified, but I don't remember her freaking out. She was calm, which made me feel better. They took this GIANT needle out, and told me they were going to stick it in my port on my chest. I almost passed out. She took out this can of freezy stuff, and told me she could spray my skin to numb it. I took her up on it. They put the needle in, I swear my heart stopped beating I was so scared. Once it was in I said "whoa, that was it?". It wasn't that bad. Then she hooked up all these bags of all these fluids to a big pole which was right next to my chair. She took a little syringe and said "this is called the butt burner. This is a med for anti-nausea, it makes you feel like you're sitting on fire for a second, are you ready?" What else could I say but yes. She injected it into the tube, and it felt like I was sitting on flames. Horribly. Never want to ever feel that again. It went by really fast though. Then for the next hourish I got to hang out while the two big bags of stuff dripped into me. Eeew. I think I fell asleep. My mom sat beside me patiently. I remember it being really cold. They had the nice warmed up blankets like the hospital did, that made me happy. The nurse came back with lots more syringes. She explained what they were, Bleomycin, Adriamycin, Dicarbazine, Vinblastine. I was like, ok lady, I really know what they are. She was cool, and told me what other patients refer to them as. The only one I remember was Adriamycin, which I guess people called the Red Devil. It was the drug that made your hair fall out, and made you pee red! Eew. She injected two HUGE syringes. They made me sick at the site of them. They were Hawaiian Punch Red. To this day I cannot drink anything red, and if I see Hawaiian Punch, I have to leave.

I get the drugs all "pushed" through me. Then I have to pee. I have to wheel this giant pole with bags hanging connected to me into the bathroom. I peed red, it was nasty. I had to go back to the chair for some more meds, and then they took out the needle. The whole process was abut 3.5 hours. Took forever! They had to "flush" my port next, meaning taking a fluid and pushing it through my port to make sure it didn't get clogged with any fibers, or whatever else was in my aorta. yuck. They used heparin, which has no taste or smell. Well it did have a taste, and a nasty smell. As soon as the pushed it, I tasted these gross vapors in my throat, smelled this toxic-y smell, and heard it bubble near my throat. yuck. yuck. eew.

I was done. I saw my oncologist, Dr. Sivarajan, Dr. "Siv", who is awesome. He told me I did great, and I should probably start shopping for a wig because I would probably lose my hair by January. I cried. I wasn't ready to hear that.

I went home. My grandparents were there again. That made me feel so much better. I got home and I fell asleep. I couldn't eat, all I could do was sleep. I don't know if I was tired, or just to the point where I couldn't take it, and sleep was the only thing that made everything go away. I remember that Mrs. Whitgrove, a friend of my mom and a mother of an old friend of mine, stopped by my house. She had grocery bags full of food for us. She made mashed potatoes, and some other fun stuff. I hadn't really been home at all, and obviously grocery shopping was the last thing on my mom's mind. It was the sweetest thing. I ate mashed potatoes that day. That was all I ate, but they were so good. I think the next day my friends Julie and "Wruk" came over. Julie brought me Joliet Monopoly and they baked me a get well cake. It was so sweet. They hung out with me, we played monopoly for a little bit. Of course I started to feel really sick. I was so nauseous, I couldn't leave the bathroom. I couldn't even come down to say bye to them. They still waited for me. They were awesome. Eventually they left, because I still hadn't come down.

I ate mashed potatoes the next day. I lived in the tv room, with my wedge pillow.

My mom had the fire place on, so it was always really warm. I was always cold. Our dog, Ricky, a wonderful shi-tzu hung out with me non stop. We had just got him the year before. I think he knew I was sick because ever since I came home from the hospital, he never left my side. He followed me everywhere. It was nice to have constant company like that. I really believe dogs can sense things like that. He was, and is, the best dog ever!

I remember Christmas Eve came. Every year I celebrate Christmas Eve with Chris's family. They had it at their house that year. I was excited to go. Chris came to pick me up. He brought me my gifts. He always gets me lots of fun stuff. He got me an iPod to listen to while I was sick. He got me and old school sega and nintendo, with a million games to play. He got me movies, books, tons of stuff. He was so thoughtful. I love him. When we got to his house, I remember not really being able to leave the couch, I was in a lot of pain. I ate dinner, we opened some gifts, but then I had to go upstairs and sleep. I was always so exhausted. Chris drove me home that night. The next morning was sad. My dad was in FLA still, all alone. Christmas sucked without him. I don't remember what we did.

My parents are wonderful. For Christmas, they got Chris and I plane tickets to go to FLA to see my dad. We were going to leave January 2nd, I think, and stay for about a week. It was perfect. I was so excited to see my dad. It was also nice to get out of the nasty winter weather here.

My mom insisted that the airlines provided me a wheelchair at the airports. They never came with one. I was ok to walk, but my mom was so mad at them. She is very sweet. Chris had never flown before. The airlines screwed up our seats, and our seats weren't together. I was so mad. We had to pay extra to get to sit by each other. I remember being really mad at my old room mate because she "borrowed" my flat iron, and I didn't get it back in time for Florida, I thought it would be the last time I could do my hair. Grr, I was so mad, but Bess (my sis) let me take hers. The flight was nice, we landed in Orlando. We got on a shuttle that took us to the town my dad was staying in. It was so great to see him.

He took us out to an Italian restaurant that night. We stopped at Walmart, and he got Chris and I all kinds of food, stuff he knew we liked. Florida was great. We went to Tampa Bay, and swam all day. Ate all kinds of good food. One day we drove down to Cocoa Beach, on the Atlantic side. We swam all day. Chris had never seen the ocean. We even saw sharks, swimming about ten ft. away from us. Scary. It was perfect. I remember that night we ate at a seafood restaurant on the beach. Chris had to get grilled cheese, he doesn't eat fish. It was perfect. We went out for gelato later. I remember being really cold, even though it was probably 80 out. One day we went cameoing, and our boat capsized. It tipped into the water, everything spilled out. We were in jeans and t-shirts. My shoes floated down the river with our cooler. The canoe guys managed to save everything. I was freaking out because there were gators and snakes in the water. My dad and Chris convinced me to get back in. I was so scared, but it ended up being pretty awesome. We went to an animal sanctuary and saw sea cows (manatees). They were so cute. We had so much fun.

FLA went by too fast. It was so hard to say bye to my dad. I didn't know when I would see him next. We went out for breakfast before our flight, and then he dropped us off. I couldn't stop crying. Once the plane took off, Chris handed me an envelope. It was a card from my dad that said "Kate, don't cry. It will be ok. Love you, Dad". Somehow, I didn't cry.

We got home to the nasty weather, and my third round of chemo. I had to go to chemo every other week. It wasn't that bad. I went every other Friday, and the day after each chemo I had to go back for a shot. It was called Nuelasta. It promoted white blood cell production, which boosted my immune system.

"Chemotherapy (also known as chemo) works by killing fast-growing cancer cells. Unfortunately, chemo can’t tell the difference between cancer cells and fast-growing healthy cells, including red and white blood cells. As a result, one of the most serious potential side effects of some types of chemotherapy is a low white blood cell count.1,4,5 Chemo that causes this side effect is described as myelosuppressive (my-eh-low-suh-PRESS-iv), because it suppresses your production of white blood cells. A low white blood cell count—also known as neutropenia (new-tro-pee-nee-uh)—can place some patients at risk for severe infections and interruptions in cancer treatment.1-3 In fact, complications associated with a low white blood cell count are the most common causes of dose reductions or delays in chemotherapy. 6-8 Neulasta® is a white blood cell booster to help support your natural defenses and help reduce the risk of infection in patients with some tumors receiving strong chemotherapy. "(taken from Nuelasta's website)

White blood cells are produced in your bone marrow. This shot stimulated the growth of marrow, which in turn caused tremendous pain. I went back to JOHA at 8am every other Saturday morning. It was always cold and grey. I got the shot in my stomach. It hurt bad going in, and drastic pain followed pretty quickly. It felt like all my bones were throbbing, like they were going to explode. They felt brittle. I couldn't move. All I could do was lay there. It was the worst part of chemo. I also had to get a shot for my red blood cells the day of my chemo. I forgot about that. That hurt worse going in, but no side effects. I didn't mind that shot.

That's all for now.

Tuesday, November 3, 2009

I think....

...I want to remember all that I can about my experience. I remember bits and pieces, but if I get it all down in writing, I think it'll all come back to me. I'm doing this for me, I'm sorry if anyone finds this boring.

I remember...December of 2006, unfortunately I can't remember the exact day, I packed my stuff from my parent's house in Joliet, and was ready to go back to my apartment in Chicago. Chris was driving Meg and I back, and on the way we stopped to go sledding. We have always loved sledding, and usually go at least once each winter. We went to Dellwood Park, in Lockport. It was dark out. I was wearing Chris's snowsuit, and the boots my grandma got me for Christmas the previous year. I remember seeing the 'no sledding' signs everywhere, should of listened, right? Well, it was cold, and the snow had iced over. We had four sleds with us. I was scared, but went down the hill. The first time I went down I swore I broke my hand. I was crying, and if you don't know this, I am a HUGE cry-baby, and usually exaggerate pain. Chris and Meg told me I was fine, and quickly realized that my hand was totally fine. I was ok, but way shaken from the fall. They kept going down the hill, they were having so much fun. I was sitting up top, not too close to the STEEP edge, watching, freezing. They said, "Kate, just go down, but don't let go of your sled this time! Stop being a baby..." (Or something of that nature...). I muscled up the courage, jumped on the red sled, with these cheap black handles. I just kept thinking, don't let go Kate, just don't. The hill was slick, basically ice, and very steep. I remember going down thinking "ok, it's fun...", and then I hit a bump. From there, I don't remember what happened. All I remember was opening up my eyes laying back down at the bottom of the hill. I couldn't even move. I couldn't talk, I was so scared. Chris and Meg were still at the top. I yelled up that I couldn't move very well. I was able to move my arms and legs, but it hurt SO BAD. I was basically scream/crying. This horrid, annoying sound. They came down on these shoddy steps built into the hill, which were barely showing from the snow. They're looking down at me, bird's eye, and I tell them something is seriously wrong. They didn't really believe me at first, and I don't blame them. I always exaggerate. They convinced me to walk up the hill on those barely there steps, and somehow I made it. I got into the Rendezvous passenger's seat and couldn't sit up straight. I had to recline the seat totally. I told them I need to go to the ER. We left. We got to Joliet quickly, and I said I need to go to St. Joe's right now. I told them not to tell my mom, she would FREAK out. I knew I hurt myself, but I thought that the doctor could magically crack my back, and I'd be fine. I waited in this stinking nasty ER waiting room for what seemed like hours. I was still in my snow gear, sweating, and basically laying face down on the floor, because I couldn't sit any other way. They FINALLY got me into this curtain-off'd area, and on a table. I was screaming from the pain, still, and this shortish guy came in and told me was going to give me a shot for the pain.

I am terrified of shots, like most of us, right? He said give it 5 minutes, and it should feel better. Crazy me honestly thought he meant he was going to leave this giant needle in my leg for five minutes, which caused me to become even more hysterical. Chris calmed me down, explaining to me what the man really meant, and I took the shot. I felt immediate relief, but not total. I got some x-rays, got wheeled around in this hospital bed, and was brought back to the little curtain room to watch some bad tv. I remember seeing my mom there, Meg had told her. She was basically freaking out. I was semi-sedated from the drugs, but still mad that someone told her. I didn't want her to freak out, and I thought I'd be out of the hospital that night. I really did. By 12 am I told Chris to leave. He had finals the next morning, very early. My mom stayed all night, and around 3am, I was brought to an actual room. That's when I knew I wasn't leaving anytime soon. This is where I can't quite remember when or how I was told about my back. But, I was told that I had a compression fracture in my T11 vertebrae. It should normally be shaped like a cube, but mine was shaped like a wedge. It was just about in the very middle of my back. I don't really remember the next day, only having my mom, Bess, and Chris at my side. I shared a room with this girl who seemed to be my age. I felt bad because she had no visitors. We shared magazines.

I remember getting wheeled around for a million tests. I had to get an xray for my back, and I couldn't walk. The xray lady was very mean, and she made me get up and hold this giant film window against my chest. I could barely hold it, let alone hold myself up. I don't know why they never helped me...I remember the MRI. I've never had one before this. I've had CT scans, but MRI's are in a smaller tube. Even if you're not claustrophobic, you will be during this. The nurse put a towel over my eyes so I couldn't see how tiny of a space I was in. Of course, the towel fell off, and my arms were strapped down. Not like I could even lift them up to fix the towel, but it was not fun. The machine was VERY loud, and took forever. I also couldn't move, but was laying in a position that was very painful. I got wheeled around a million more times, for many more tests.

So many people sent flowers, and mugs, and cards. My mom brought me every magazine that was out. Chris brought me the best tofurkey sandwich ever. It was kind of nice, but got very boring, very fast. The tv sucked also.

My mom new all the nurses there, so they got me moved into my own private room, with apparently, a nice view. It was huge. We could fit so many people in there. I remember being on a morphine drip, and it made me feel really sick. The nurses were so sweet. The next day, hour, whatever it was, is a totally blur. I remember a doctor coming in asking me how long I had had this lump in my neck. I didn't know I had one. Then another doctor came in and told me he was going to take a biopsy of the lump in my neck. He was going to do it bedside, with me awake. I had never had surgery, and said "hell no. Bring me to an OR, and sedate me if you're going to cut out part of my neck!!". He talked me into letting him do it bedside. I guess it wasn't a complicated procedure. I think my mom almost passed out. He put a nice little curtain up in front of my face so I didn't have to see any blood. I got some stitches, and was fine. Now, all the while, I am missing school. I was in the fall semester at Columbia, trying to finish my projects and presentations up for finals the very next week. I still had no doubt that I'd be back in time to finish them, but that quickly changed. My family tells me what happened, but I don't remember any of it. I remember being woken up by a woman doctor who I had only met twice. It was 5 am (ish). She told me that I most like have Hodgkins Lymphoma, and I need to see an oncologist. I said, "what's an oncologist, they work on your feet?". I didn't know, maybe because it was 5am. She said something blah blah blah cancer blah blah blah, and I broke down. Around 6 I immediately called Chris. His dad answered, asked how I was, and I just started crying. Chris came to the phone, I don't remember what either of us said, but I just remember feeling scared.

I don't remember much else. I remember my family all being very sad, and seeing their sadness made me even more scared. It was 100% confirmed that I did have lymphoma, with many tumors in my chest and neck. I had no symptoms.

I remember texting my roommate, telling her to tell my teacher that I couldn't make it to class the next day. I remember people crying, and I remember the food. I was on so many diet restrictions because of tests, but I'd still order the hospital "room service" for my sisters and Chris. They kept bringing us food, thought I was crazy also for ordering so much. Chris brought a portable dvd player and we watched something. I don't remember. Friday night, ( I was admitted Sunday night), tons of friends came to see me. It was weird, they all came at once. It was awesome. They hung out, brought me flowers, smiles, food, games, magazines, so much. It was good to see them. I remember my mom tried to comb my hair for me because I couldn't move to do it myself. It was bad, all ratty from laying down for a week. My sister brought me my pillow. I remember Meg went to sit on the ledge near the window, and accidentally knocked over a Mug of Flowers and broke the mug. I remember falling asleep while they were still there, I think. I had my back surgery the next morning. I was scared, but realized I should get over that quickly. I was wheeled into this FREEZING waiting room. The nurses bundled me in a million warmed up blankets. It was awesome. I remember going into the OR, I remember them putting the mask on me. I remember waking up in the elevator being wheeled by 3 young kids. I started talking gibberish. I got back to my room, saw Chris and my mom, and I think I fell asleep. When I woke up I felt amazing. My back hurt, but nothing compared to the previous pain. They performed a kyphoplasty on me. Normally it's a procedure done on the elderly, due to bone breakage from osteoporosis. It was either that, not knowing long term side effects, or wear a back brace for 6 months and be bed-ridden. Obviously I chose the surgery.

I got to go home that day. It was awesome. I still didn't know what to expect in the next few days, but I was focused on going home, seeing my dog, checking my email, and watching some good tv.

My mom got me this wedge pillow, I couldn't lay on my back, and still cannot to this day. My grandparents came over that day, and I was so happy to see them. I was so tired. Chris brought over tons of movies, (he worked at Blockbuster then, :) ).

On Monday I had to meet with a surgeon who was going to put my port in. It's a silicone piece implanted near my shoulder, with a catheter connected to my aorta. I didn't understand it. I went to Silver Cross for that. Chris brought me, and he got to wait in the little room with me while I was prepped. I liked that hospital better then St. Joe's. The nurse who was helping me was getting married the following weekend. I remember feeling a bit jealous, wishing I were her. They brought me in, and apparently when I was done, and still a bit drugged up, I was telling the nurses that my boyfriend was going to get me mint chocolate chip ice cream that night. They found him, and told him he better take me out for ice cream. It was funny. On the way home he did. It was freezing out, and I could barely move my arm to eat it, but it was soooo good.

I think I'll stop for now...