I have never been asked to share my story by someone before. Although, I have been working on a Photo mural book since I was diagnosed, no one has ever really cared about my story. In reality, most people I meet are surprised to hear I am in remission even though I have never hidden it. I assume it is strange to see someone happy and healthy after dealing with a baseball sized aggressive tumor. I have never met another Glioblastoma brain cancer survivor in person, only online. When I discuss it, the topic always turns to someone losing their battle with GBM and with the statistics as bad as they are I am not surprised. I struggle to think of words to describe my life at times. I went from an overflowing creative Fine Arts student who thought I should get paid to write my Term papers (I really did, they were that good!) to a student who stresses to get even the most weakly poetic words on the page. My husband is a writer and I only wish I could flow as smoothly as he does. However, when Meaghan asked me to share my story I was both surprised and greatly honored. As I lay on the MRI table earlier this week and they struggled to try and “SAVE” my vein *which means wiggling the IV inside my arm around until they actually get it into the vein* and finally settled on my hand, I knew I should be sharing it. Many times in my life I forget I had cancer at all, no one mentions it, and no one acknowledges it anymore. Only as I lay in pain, having a panic attack, struggling with a cold I never used to get, or everyday as I take two 1000 MG pills am I reminded that I am a survivor. I celebrate all my anniversaries but if I stopped to think about how many people in my life actually remember why I am celebrating, it would be a depressingly small number. I knew I would not be able to write up my story from scratch. You see I am completing my second bachelor’s degree in Media Arts and Animation and currently my class is killing me! This is primarily my reason for not having my book completed; I take on too much for one small person. I work a full time job, I intern and do contract work for a studio in New York, I go to school part time and I try to do as much charity work as humanly possible. I wanted to share my story from my book. Here is what I have written so far (hopefully one day you will see it and the website that will accompany it out there in the real world! ^_^):
“While I studied in Tokyo Japan in the fall of 2004, I walked several miles a day to and from my university. I rarely took the subway and chose to walk as much as possible. It was not the concrete scenery that kept me going, but the lack of funds and a will that I would study in Japan, and I would do it no matter what it took. Japan was amazing. There was so much life in Japan. I made numerous friends, and I maxed out a credit card on food and art supplies. During my times there I was introduced to an excellent photography instructor named Shinya. It was my first step into the world of Photo books, and I jumped head first into my projects. It was costly and time consuming, but it was the easiest way to communicate my feelings. I left Japan in December and settled back into my normal university life that following year. On April 4th, 2005, the first nice day of spring, I decided to start walking the 45 minute hike through the city to my home much like my hikes in Tokyo. The sun was blinding, and it had just started the unseasonable heat wave. I made it home perfectly fine, and decided to go to the library down the street for free movie rental since they have the best foreign film selection. The movies that I wanted were checked out, so my friend and I made our way back to the house. When I walked in the door it was so dark. It felt as though my eyes would never adjust to the light. I could hear the trickling of the shower in the one bathroom located through my bedroom. My then fiancé, Kris, was taking a shower, having a weird sense of humor I decided I should bang on the door.
“Come out of there! It’s the police! Open up!” What a funny joke, right? A few steps later, I was walking in a circle and laughing like a mad man with tears streaming down my face. For me, I could hear the strange laughter and knew it was coming from my mouth, but it seemed unreal. I could not think about the laughter for long, my head was cricked to the left side and I was seeing flashes of objects. Ceiling, dresser, friend in the doorway. Ceiling, dresser, friend in the doorway. The same repetitive images over and over as I twirled in place. The sounds were worse. I could hear that Kris had come out of the bathroom having finished his shower, and he was talking with my friend.
“What happened” “I don’t know, I think she hurt herself.” (I laugh and cry when I get hurt sometimes). “Honey, are you ok? Honey, stop doing that! Honey?” The last thing I remember was the simultaneous “I’m calling an ambulance!” When I woke up, I was on a gurney and the sun was once again shinning in my eyes. Two paramedics were attempting to talk with me but my voice was missing. I felt helpless. I could see the environment around me. I remember glimpses of my neighbors standing outside. Groggily I tried to explain that I am scared of needles. I started crying uncontrollably and searching for Kris. When I found him in the front seat of the ambulance, and I begged him to make them not stick me with the needles. From my place on the gurney, I could not go anywhere. I felt like I weighed a ton, every movement of my head felt like it took more effort than I had ever exerted before. The paramedics were asking me questions and engaging me in dialogue that to this day I do not remember. The lights from the emergency room were almost as bad as the blazing sun light. I remember lots of faces and flashes of images, but the next full memory I have is sitting in the ER room 19 with Kris and my friend in the chairs next to the bed. As a art major I remember the art work being so terrible in the rooms, single block colors with a white matted border hanging from the walls, not even fit to call it art. My body felt fine, I have no idea why I felt ok but had lost a chunk of my memory and was ok with that. I told everyone that I was ok, and that I was dehydrated. I apologized for not drinking any water on the way home and reassured them that I would be more careful next time. I told them these were just routine tests. I begged and begged for some water. When the doctor entered the room she has a striking resemblance to my eldest sister. She even had the start of the same birthmark my sister possesses but not as drastic. She has curly happy hair, but not a smiley disposition. Her name was Dr. Bohn, and my mind raced to the old Bevis and Butthead response of “heh heh heh heh, her name is Bohn. Heh heh heh heh!” When she sat on my bed, it was not with a “dehydration is a serious matter look”, it was much more grave.“You have a Tumor.”
You have a Tumor.
Have you ever had such a ground breaking string of words said to you that at the time seemed insignificant, but the more times it echoes in your head, the more it occupies your thoughts? These are my ground breaking words, but I did not respond the way a “normal, well adjusted” adult would respond. There was no worry, there was no sorrow. My mind jumped to Kindergarten Cop with Arnold Schwarzenegger echoing “It’s not a Tumor!” It made me smile. I must be the only patient that upon diagnosis, smiles. I was run through a series of tests, which to me seemed to take a mere second, but in fact I was under observation and study long enough for my family to commute the two and a half hour trip to join me at my bed side. It was nice to see my family, but I did not see what the big deal was. They never came to see me, so it must be something big. I just wanted some water, I was dying of thirst! When Dr. Bohn (still makes me smile as I write it, think about what it would have been like to be name Bohn during the Bevis and Butt head era where everything was funny) came back to my room, she stated that the tumor was fast growing and I would need to be admitted. I was scheduled for surgery the next day. My room was a normal hospital room but I had no roommate. The rest of the night is very cloudy to me, I remember laughing with my sister about my thoughts during diagnosis, and I remember getting woken up by the nurse early in the morning, but only for a few seconds of ultra bright light. I remember having to chew on ice because I was not allowed to have any water. At some point during that day I remember complaining about my catheter and having the nurse remove it. Later that night, I had to go to the bathroom very badly, but I knew that I was hooked up to what felt like every machine possible. I felt wobbly and I did not want to cause more damage by trying to do things myself. I pushed the nurse button and informed her that I had to go to the bathroom. I waited and waited and waited and no one came to me. I tried again and informed them that I needed to go to the bathroom. I could hear the nurses chatting a short ways out of my room, but it sounded like I was underwater. I still to this day think it was from not being able to go to the bathroom, and not that I was drugged up. When the nurse finally answered the call she answered now fully annoyed that I had a catheter. I informed her that it had been taken out and that I had to go to the bathroom. She checked like I was some kind of lying scam artists that likes to play in the ICU. She reluctantly placed a container under me and told me to go. I did and then I had to push the button three more times before she came back to help me take it away. When she did, she spilled it on my bed, and I ended up spending the rest of the night in a soggy, nasty bed. Now I could have left this out, but this is my strongest memory of my hospital experience. This one rude nurse, made that big of an impression on me that she blocks out all other memories. When I awoke later that day, my head was covered in a really soft rag hat. I had several IVs in me now, and I was relieved that I did not remember them sticking them into me, especially the one that went to my heart. My mother informed me that the old woman in the room next to me in the ICU was also named Jetty, but it was spelled Jetti. She told me of the woman’s happiness to hear that there was another Jetty in the world who was young, but I wondered how much happiness she could have knowing that the other Jetty was sitting in the ICU. Not exactly the best place to be at the young age of 21. From my bed I could see the flowers and balloons from my friends and co workers. Kris had brought my monkey that I sleep with every night, and my cow blanket. The first thing that crossed my mind was to get my camera which I carried around with my every where (a habit I picked up from Japan). While a strange request, Kris brought me my camera and I started taking pictures of everything: IVs, self portraits, get well presents, everything to document my time. When my batteries died, they were replaced and more pictures taken. I was still on plenty of drugs, and the soft hat was eventually taken off which exposed my bandaged half shaved head. The earliest pictures of me are smiley peace sign pictures or me making faces. There is no sorrow or depressed feelings. I was moved to another room where I had a roommate, and I started to feel strange. I was on anti-seizure medicine and I was feeling funny in my most intimate places. I tried to complain but no one would listen to me. It was another time during that week where everything was discussed with everyone but me. My voice was not heard by any doctors. I was released from the hospital five days later and was happy to be home. The next day I went to see an oncologist at the cancer center close to my house. The doctor blew off my uncomfortable feeling and told me to get some over the counter medicine. Later that night, I was freezing. As I brushed my teeth, Kris touched my back, his hands felt like pure ice. As I lay on the bed, I knew he was scared because he was frantically looking for the thermometer. My sister who was staying to take care of me, sat with me as Kris went to the local Walgreens to buy a thermometer. After about 45 minutes, I began to worry about him; I was so cold and could not get warm. When he arrived, he carried with him a $20 thermometer that upon placement in my mouth failed to give an accurate reading even though the packaging said “Guaranteed accurate”. We finally decided we needed to go to the hospital and have them do it. Another waiting room, another nurse, same old questions, same old room, it was becoming my routine. When they took my temperature it was 102 degrees. As I was taking off my shirt to change into the ohh so flattering gown, I let out a small gasp. My whole body was covered in little red bumps. Once I had caught site of them, they started to itch. That was my first, but not even nearly my last encounter with hives. I was miserable when they took me to my room. My legs were weak; my whole body ached and itched at the same time. I was freezing but they denied me any kind of blankets. It took my parents a while to get to the hospital and once they arrived they informed us that they could not stay but one night because they had a pre arranged trip. Since my fever was so incredibly high, I suffered through ice baths all night long, with not a blanket in sight. My teeth were chattering from the cold, but at the same time it eased the burning itch of the hives. It was a love hate relationship between me and the ice water bath. It took a full week (seven days) for my temperature to return to normal. I spent more time in the hospital for this than for my tumor! It seemed like every doctor that came in started his conversation with “Well, we think it is the Dilantin, but to be on the safe side…” I even saw an infectious disease doctor. I got a spinal tap, and several blood drawings. It was incredibly miserable. The pictures from this time are of a very miserable Jetty. It turned out the uncomfortable feelings I had been having were the starting signs of my allergic reaction. “Dilantin Hypersensitivity” it is called. If one doctor had stopped to listen to me, I would not have spent a week in the hospital being poked and prodded looking for an answer. In the end I was happy to leave the hospital, but it left my seizure medicine issue up in the air. I needed the medicine to handle the seizure matter, but which one to put me on. The next batch was Depakote. Depakote is a monster sized gray pill that didn’t even last two days before I awoke with full body hives. This time I was told to stop taking the medication and start taking Tegretol instead. Tegretol is a small white pill that worked for about two days on me. The hives that had started to subside were going strong now. I met with my Neurologist at this time to find me a medicine that had no known rash reaction, and that is when I found Keppra (which I still currently take). The list of my allergies is still constantly growing and it seems that with every new pill I take I get a horrible rash. I am even allergic to Priloseq and Zantac. That even stupefied a local dermatologist! I now own a huge vat of cream that is “10 times stronger than cortisone” this was only after I emptied over 15 tubes of Cortisone 10.
Treatment: One step at a Time
Radiation is one of those experiences everyone is curious about but you just can’t put into words. When I went to my first session, I got to lay bolted onto a slab and my face was covered in a wax like substance that began to harden while on my face. The pictures of me during this time are very strange with half of my hair gone and the beginning effects of steroids. I am still smiling, but I have not yet accepted that I have cancer. Even though my first meeting after my surgery with the neurosurgeon called for cyberknife treatment (a radiation knife that “cuts” out the cancer without actually cutting), my oncologist said we would see after my treatments how we would proceed. So, I began my treatments. They were scheduled during the end of my school year on into the beginning of summer. I did my homework using the internet and having friends turn in my homework for me. Radiation is like nothing of this world. Treatment is different for every person, but it is also the same for everyone. Unless you have been through it before, you have no idea what it will be like. My cancer was strange. I did spot treatments (focused on my right frontal lobe) for almost two months. I was worried about how I would feel afterwards. For the treatments which were 9 sections of 5 minute I was strapped into a machine which spun around me and made the craziest noises, like creepy animals in the woods, I was fine. I was reading an excellent book at the time which consisted of several flesh eating horrors that I imagined those sounds coming from. It was not until after I had finished my first month that I started to get very tired. I was on steroids which not only caused me to feel like I was starving and eat everything in sight (causing a 40 lbs weight gain), but also made my legs and arms incredibly weak. I would fall for no reason. I feel going up the steps, I feel walking on the flat smooth flooring on the local library. My legs would just give out and I would go down like a ton of bricks. My face swelled up like a balloon. I was informed that these symptoms were known as “moon face” and “noodle legs”. Sometimes Doctors have the strangest names for the worst symptoms. It was like I was not in control of my muscles. One moment I am up and happy, the next I am lying on the ground like a fish out of water. The actual radiation treatments were not bad. When I went in for my treatments I was placed on a slab, I had a triangle of foam under my legs to keep them from getting tired and I had a blue ring to hold onto to keep my arms from getting tired. The mask was placed over my face and then bolted to the slab. It was not comfortable, and as I gained more weight they had to cut the bottom a bit so I could fit into the mask. When I left the treatments I had little triangle marks where the mask had pushed into my face. Radiation makes you tired and weak and when you finish a treatment you just want to go home and sleep, which is what I mostly did during those days. It was mainly after my treatment was over that I really felt the whole strength of the treatment. I would try and take a bath and Kris would have to help me out of the tub or he would have to help me dry off after a shower because my arms were too weak to hold a towel. If I got up too fast from a chair, I would almost pass out. It was very difficult to get around by myself, without my fiancé I would have been lost.
I had a few seizures when I changed my dosage and was taken off of steroids. They were minor and occurred only in the face, but it has such a draining effect that I am shot when I have one. Chemo is one of those things that affected me the worst, but that is different from most survivors I meet. My chemotherapy was in a pill form called Temodar. I took 4 1000 mg pills a day in which I had to take 3 stomach medicines to over come the nausea. I would take them in the early morning (sometimes I would go to bed afterwards). They had to be taken with a full glass of water and on an empty stomach and I couldn’t eat for an hour afterwards. It was rough to be on steroids which severely boost your appetite and a pill that doesn’t allow you to eat. The morning dose was not so bad, I would take it and go back to sleep and then wait until I woke up to eat, but the night time dose was horrible. It would be 3 in the morning and I would be eating because I had to wait until my stomach settled in order to attempt to satisfy my hunger pains. The one time I did not take my lifesaver stomach medicine, Kytril, I was vomiting non stop for two hours. I threw up so much I chocked on it. Chemo made me so weak for so long. At my yearly gynecologist appointment I bled during my examination and the tiny pin prick to check my iron came back with a very low number. As the finger test is not very accurate, I was forced to wait in a calming room while they called my oncologist to get advice on what to do. My oncologist was not available but the oncologist on call informed me that since I was on chemo I would be anemic and the doctor gave me a sheet on how to boost my iron intake. They scheduled a meeting with my chemo doctor for a week or so later.
About three days later, my best friend (a wonderful Korean boy whom I had known for couple of years) became very sick and wanted to go to the hospital. I pestered the ER administrator if it would be possible to merely ask the doctor a question I had or would I need to check it. Subsequently, I had to check in. No free advice in the ER. The night before I had noticed some red marks all over my body like a bad prank, they were under the surface of the skin and did not itch, so hives were out of the question. I was not concerned, just curious as to why it looked like an instructor went to town on a failed test all over my body. I waited in a different, smaller emergency room this time, and spent my time convincing Kris that this would be the first time I was in the hospital that I would not have an IV or have any blood drawn. Too bad I didn’t know on any wood then! After taking one look at my chest they decided to drawn blood. The first blood drawings were not so bad, they hurt a bit but at least I didn’t have an IV. Wishful thinking on my part! After the blood somehow became unusable they were forced to draw more. This time it was horrible. When the results came back, it was once again Dr. Bohn (who did not remember me but I remembered her) who came to tell me that I was staying. I received a very harsh lecture about how much danger I had placed on myself and how no matter what my symptoms were I needed to come to the emergency room immediately if anything changed with my body. A normal human being has a platelet count between 150 and 400 (thousand) A normal cancer patient has a count between 25 and 45. My count was 7. Yes, 7. I felt fine. I came to the hospital because my best friend was sick and he could not drive.
I had to get a platelet transfusion. This meant another stay in the hospital, another round of misfortune. The platelets were administered and I was told it was going to be an all night thing. I sent my husband home because I didn’t want him to lose his current job which he was striving to keep while still being my caretaker. After he left and the bag emptied, I found out that all the platelets I needed were in that one treatment but that I needed to stay over night for observation. I started to feel funny so I asked the nurse if I could be allergic to the platelets. She told me it was impossible. I then asked it I could be allergic to saline because it always makes me feel horrible, I was once again told this was impossible because our bodies are composed of salt water. I tried to explain to her that I did not feel right and something was wrong. She told me to try and sleep and everything would be better in the morning. I went to the bathroom before going to bed (quietly as I had a roommate that was probably already disturbed by my 10:00 admittance to the room) and I pulled down the front of my gown to reveal full body hives. I called the nurse again and she reluctantly came in the room. When she saw the hives all over my body her mood changed abruptly. She gave me a Benadryl shot and I went to sleep. The next day I was informed by the Doctor that you can in fact be allergic to platelets.
I visited my Chemo Dr. for the appointment a couple days later and he took more blood. He decided that with my counts so low, I should cut my treatment two months short because I was so anemic. I was weak, and tired after that point. Strange that I was fine when I checked in, but horrible when I checked out. Hospitals have a way about them that makes your feel worse first.”
If you have read all of this, then I applaud you! ^_^ I couldn’t find a way to edit the writing to take out some of this long winded writing. Now, you know everything about my story and I hope that it helps someone feel better about theirs! If you have any questions or need anything from me, please feel free to contact me through Meaghan!
Love Love Jettychan
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