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....

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