Amazing new friends

This photo is a good friend of mine who has helped me through the roughest periods of my cancer. He is one of the most loveliest people I am priviledged to have met. He'll never let you know it but he is a real sweetheart and one of the most intellectual persons I have ever met. Each of my friends hold a very special spot in my heart.


Through my time with cancer I've seen some friends come and I have seen friends go. People say that when times are difficult is the time you see who your real friends are and who aren't really your friends. I've have some amazing friends...I really have to say that. I've also have met some really amazing new friends which I hope to incorporate them into my new project.

It amazes me how many people come up to me asking me if I have cancer. I enjoy having a bald head and wearing a scarf on my head is what I want to say to them but in reality on one respect I don't mind but on the other it's odd. I really don't like all the attention that my scarf attracts to me but it's basically the only thing that's comfortable enough for me to maintain. I really hate wearing my wig.

Anyway, I was at the bookstore today to get some books for class and this lady comes up to me asking me about art supplies. Then she starts talking to me about her cancer. Turns out she's had brest cancer too. Out of nowhere she tells me her situation with school. Apparently school kicked her out of school because of her cancer. Shocked and amazed that there was more than one person with this problem with school I am severely disappointed in the lack of compassion my school has for thier students with cancer.

When a person gets cancer it's not an easy thing to deal with. The pain, suffering, and the constant thought of death surrounding you. Her story reminded me of my situation. Atlease I had it easier and school didn't forbid me to come back...but, seriously she had her childred to keep her going everyday as she recalls her disappointment from school I really had nothing to keep me going. I kept recalling ow depressed I was. You see, at the time of my diagnosis I had just started my divorce my whole life just seemed like it was falling apart. And then I was diagnosed with breast cancer. It seemed as I was down I was kicked in the teeth again with the whole situation with school but at the time it was just one teacher.

I remember how suicidal I was...I basically felt I had nothing and the one thing that was keeping me going was finishing school. My whole life seemed like it was on a path of distruction. Had I not had some of the fabulous instructors in the spring of 2008 I really don't think I would have been alive.

Radiation started

My first day meeting with the radiologist and preparing me for radiation treatment.

I've had three rounds of Radiation so far and I can say that it's kinda blah. Like Oh, That was it?!

I first started out by going through a simulator which is a two day process. I am first scanned and then marked up by tattooing my body. They do this so that I can shower and not have to repeat the hole process over and over again. The pin in inserted into my skin and then she poured ink on the areas leaving a tiny pin needle tattoo. I've seen the same tattoo larger and in a shape of a cross over the breast on the chest. I guess I'm lucky that I didn't have to deal with that. One of the nurses mentioned that they didn't tattoo like that cause I liked wearing lower shirts. I thought that was rather sweet of them.

The nurses are nice and sweet, they rack me up everytime I go, I suppose it's the Chicagoan banter that I enjoy the most. It's just nice to be able to joke around the way we do. the hardest part of Radiation is the EVERYDAY. the constant going to Radiation every day and it's only for 10 mins at most and it seems like it's a waste of time.

I do have some skin irriation right now and there is muscle pain but the radiation people are saying it's not because of the radiation however, the nurses from the hospital is telling me that it could be and I should talk to the radiologist. Well, I suppose I'll wait and see.

Thursday I had what everyone in calling Chemo...but found out it's called Biotherapy. Why is it called bio therapy instead of Chemo? Well Chemo is basically anything chemical being pumped into your body for medical reasons. So technically it is chemo however, it's a biological reasons is to alter my hormones and block it from my cells as opposed to killing my cells.

School saga continues

I truely hate that people don't understand how difficult cancer can be for someone. My struggle with school continues to dumbfound me in new and incredible ways. I know I need to learn to deal with the burocracy of it all but COMMON, this is ridiculous.

I have taken my case to the BOE (Board of Education) and as much as I have faith in my countries justice system I am beginning to move towards the injust.

For the past month I've been fighting Financial Aid (and get this) soon after I filed my complaint to the BOE Financial Aid begins to lose my paperwork. Then I nearly lose my financial aid because of this ridiculous class. Apparently ALL "I" or incompletes turn into an F by the end on two semesters. I didn't know this but apparently it's standard procedure and yet NO ONE knows about this including the dean. No one except the financial aid department who promptly rejected my financial aid because of the loss files and this class. I had other incompletes and they tried to say it was because of the other incompletes however, I have turned in all other incompletes and explained why I haven't been able to complete Dr. H's class. I've turned in ALL other paperwork for financial aid that they requested and yet I still do not have my financial aid.

SO, the BOE calls me for the past 3 days. I've been busy jumping through hoops going to doctors appointments and trying to get Radiation treatments. So I return thier call and apologise to them with my late responses. The person who called me asked if I made a deal with school...basically if I would take the course again with Dr. Zanca. Which I told them yes I would however, this doesn't stop the fact that I was discriminated against and that I'm not really satified with the results. On top of which things have changed since the negociations had concluded...

1) the "I" turning into an "F" I was told the "I" would remain and "I" until I completed the requirements

2) It should not effect my financial aid...it explicitly told them I was concerned about it and they told me something completely different

3) I had NO IDEA how much brain damage I would have to suffer. I've have noticably difference in retaining information. I dont know if I can remember everything. I fear that my comprehension will no be up to par. I had a taste of what to expect this past summer when I took intro to Cultural Anthro...GOOD GRIEF I had such a hard time reading. I absolutely had no idea where that came from. And THEN when I had to regurgitate the information after reading the material the NIGHT before THAT was a nightmare. Exams and classroom work I am terrified right now. I've been trying really hard to rehab my brain but somehow I fear that it's not going to go back to normal.

- SO, this means if I had been given the exam BEFORE my second surgery and Chemo Dr. H and the school would not be having this problem...and it's not really the school's problem...it's mine and they could care less about what Dr. H did.

- BOE apparently is siding with Dr. H reading to me the handbook for absentses...I can't find the exact school policies but basically students have to attend all classes with the exception of excused absentese...How is surgery and recovery from surgery not excuseable?

This person from the BOE told me well you have to do the work...SO the three classes were more important than my health...I asked him. At this point Lets just call him Mr. O was rather upset and said nothing to me...I carried on and asked if he actually read my complaint? For some reason he got it in his head I didn't want to take the final. I had told him in the complaint I had requested Dr. H to allow me to take the exam on three separate occassion and Dr. H refused me. I further told Mr. O that I had ALL of the conversations documented Via Email.

Suddenly Mr. O, rather pissed off still but, started to change his tune about the rightousness of Dr. H then started insisting I change the topic back to what I wanted from the school. At this point I have no idea. I KNOW I can't simply take the exam at this point. I have to take the entire course again to be able to take the final. I'm reluctant because I don't know if I can handle it at this point. So what can I do to take this course so it would be easier on me given the brain damage I suffered?

I can not wait for another semester because GUESS WHO is teaching it, That's right Dr. H. I've already asked if I could take it in another school but NO OTHER SCHOOL has an equilivant course.

Anyway, I got in my head why does he think that cancer is NOT an excuseable absence? So I asked him...by the way I'm sobbing at this point...I HAVE NOT IDEA why, just suddenly I got really upset and started crying. I guess my fustration with finanical aid, cancer, and this WHOLE BS with Dr. H was driving me nuts. His response was he wasn't going to argue with me. Then he told me to get off the phone with him because it seemed like this was a bad time for us to have a conversation and to call him back next week to deal with this. BUT, I really wanted him to explain why he thought that cancer was not and excuseable absence...is that so much to ask?
"

Confusion fustration and oddities...

I am having a hard time figuring things out lately. The most simplest things, tasks, and even movement confuses me. My first Chemo I didn't notice it as much but progressively after each chemo I started to notice it more and more. People who had Chemo tell me that's normal and though my memory and cognitiveness (is that a word) most probably will come back as for now it's very fustrating...

The odd pain that I get on a regular basis is also a fustrating thing. I notice that I ache for no particular reason and that it's somewhat random day by day. My feet are still swollen and I can't even beging to tell you my fustration with that. Swollen feet are not sexy. Not that I'm seeking sexiness but, I like to try to look attractive.

Another odd thing that I've been experiencing is the lack of desire. I'm rather passionate person in the things I'm really interested in and the last 4 months I've not really been too passionate about anything. This who thing with Dr. H and school currently, normally I would be knocking on doors and taking care of business but, I have no desires to do it. I'm taking care of business but, it's tedious and I'm forcing myself to do it.

Sexual desire is kinda out the window too. I really have no desire to have sex which is an oddity...and to be perfectly frank, this topic is very difficult for me to talk about. Being of asian decent Sex is a taboo topic to disscuss but, it's part of something I noticed and thought I should mention.

I have this thing where I have a tremendous amount of pain in the morning with my feet and legs. I don't notice it until I actually get up and walk on them. WOW, the searing pain to the point where I nearly fall down and a tear come out of my eye. In actual fact it's more of a Stabbing pain than a searing pain. The ironic thing is, like a charlie horse, you need to basically walk it off. The more I walk to better it feels to a certain point. Forcing myself to walk is a struggle. This is the catch though...the more I walk the less pain I get to a certain point HOWEVER, the more I walk the bigger swelling occurs. Caryn calls it elephant feet. It's Kinda crazy how big my feet get. SO, I am self conscience of this and it scares me but apparently my doctor says it's normal. Frankly it's normal that's fine in a medical stand point however, in a vain way it bothers me and freaks me out that it could be permanant.

Which is an odd thing for me. I've never been a vain person. I love knowing beautiful things like in art, music, nature, etc but, never one who cared too much about how I looked. I care now. Which is really odd. I notice my hands are looking older and older. It seems like an excelerated rate. Imperfections in my face and skin. I have no hair right now but, you know if I had it it would bother me too...I'd probably find something wrong with it. I find this peculuar and unnatural. I supose it's another annoyance and fustration that I'm dealing with.

Herceptin

This photo is of me just out of my second surgery. My sister Caryn took the photo...

Well, I've am done with Chemo however, I have a year of a drug pumped into me that I have to have once ever 3 weeks for an entire year called herceptin. I just found out, after just having it once, what were the cause of my aches, pain, odd odor I am secreting (no one seems to smell it but, I can), and the unfortunate constipation. I'm not really enjoying it all that much but I guess it's better than the dosage of chemos I was getting. I'm supposed to start radiation this week but I really don't want to. It seems tedious and time consuming. SOmething I have to do every day for 6 weeks seem alot to do. Fall session comming up and the fatique that's involved quiet frankly scares me.

Yesterday, I went to school and took care of some office business I had to deal with and saw Mark, my instructor that is instructing me on my independant studies. We had an awesome conversation...a little awkward since I asked about his relative that just recently passed from cancer. But, we had a conversation that mad me realize people who don't have cancer or don't have a loved one who went through the treatments that I've gone through really don't understand the suffering cancer patients go through. Alot of the cure is hope and a positive attitude. It's hard to remain positive and have hope when things all around you is so negative. What do I mean by that.

1) You got cancer...not really something positive

2) I was fortunate enough to have a medical team that was very positive and help me maintain my positive and hopeful attitude. BUT in most cases and certainly at the beginning of my treatment my medical team was less than desired. Uninformed and pressuring me the tumor removed...people don't realize how doctors can intimidate a person into pressuring them into doing something they don't need to do in such a hurry. People really don't realize they need to get a second opinion and find a doctor team they are comfortable with when you have a life threatening diease.

3) Friends and family thier all upset some crying...not really positive. I understand thier upset because thier afraid of loosing you and all but really even if they are trying to be positive for you it's really hard for you not to see the concern, fear, and panic in thier eyes

4) Jackasses who really don't know anything about how horrific cancer is to a person and thier loved ones. They think you're faking it or doing this for some alterior motive (like Dr. H). Just the other day I realized that I need to get a handicap placcard. I really can't walk to far before I get reall fatigued or sick now. So I went to the DMV to get a form. The DMV has two lines for for Disable persons and one for normal people. I walked into the disabled line.
This man comes up to me and asks me "you know you're in the disabled line right?"

I looked at him with my head wrapped in a bandana, obviously with no hair and said yes.

As if he didn't believe me he then asked me what's my disablity?

I told him I have cancer...

THIS is what shocked me, he then commented sarcastically, "OH, is THAT a disablity?!"

I responded, like an idiot, "yes it is". What I should have said was... "you know you actually should stand infront of me because you're mentally handicapped" But I didn't instead I went and got my paper and walked out.

5) THE pain involved. The side effects. The nausea. memory loss. ETC. It makes you wonder why we go through this. Is it really worth it?

6) The Fatigue...Goodness the fatigue. Days of lying in bed unable to move because of the fatigue and the pain all you can do is stare up to the ceiling. So tired of TV (hate TV myself useless waste of my time) can't even sit up to play on the computer.

7) WEAKNESS...all the physical strength you have simply goes away. My muscles are jelly right now. Every movement I make now takes alot of effort. I feel like I have 20 lbs bricks strapped to my feet. I ride my bike with my family once a week (thinking of doing it more often) before just two and a half months ago when I was in Michigan 20 miles not a big deal, I really enjoyed it...NOW, 2 miles is extremely painful, I push myself to ride my bike because I need to build my stregnth again. As a result of my weakness and the acknowledgement of this weakness I REALLY hate to socialize. I fear my weakness shows. I turn around and think WELL, I got to do it. People want to see me.

8) Limited time...I'm more busy now than I have ever been. Why is that? I kept asking myself that...Isn't it obvious?! Because of the fatigue. I have so little time in the day where I'm conscious which is the reason why I have so little time to do things. Which goes back to the socializing thing. I realize now more than ever that I don't like someone or if it's a nonsence person I just don't have time to deal with them. I spend my time with people I enjoy spending time with. There are alot of people I like and in my past life I would have spent time with them because I didn't want to be rude and say no. NOW it's more like I really don't have the time to deal with just ANYONE so I limit my time with people I really like to spend time with. I know that sounds so cruel but it's true.

9) Memory loss...Everyone has memory loss right? This is different. Memory loss in cancer patients makes you feel like you're a nut job. Seriously. The airport incident. I drove my sister to the airport and went to McDonalds to feed them before thier flight...ordered food and paid and literally the food magically appeared. Atlease in my mind it magically appeared. Both Caryn and Clayton saw me take the food and hand it to Caryn. I don't remember any of it. Yesterday while I drove to the doctor's office, a trip I've driven a thousand times even before I got sick...I had NO idea where I was. I felt like I was driving somewhere else like some country rode in Indiana. I was actually on the interstate. My only thing that kept me calm was the signs. I was reading the signs and showed me I was headed the correct direction and on the correct interstate. Other than that I had absolutely NO idea where I was.

There are more things than this that I've written before so I think you get the idea. People ask me why I'm always smiling, and I'm so happy even when I'm going through what I'm going through and I simply tell them I have to. What choice do I have? Really the alternative is to die. I have a few more things I want to do before that happens so, I do what I have to do to keep me going. Is it difficult, YOU bet...is it worth it? Awaits to be seen.