How I Am Surviving Hell


This is more about my disease, my experience and trying to help others understand.

"The Gods looked down and laughed. ~ "Crash! into the ground. . ." ~ "Grrrr . . ." ~ "Quicker than a ray of light" ~ FAQ ~ Message Board ~ Links

"The Gods looked down and laughed."

     

1999 started off pretty well. I completed the 8th grade with fine grades; was accepted to an art school I had been trying to get into since the end of elementary school; I was confident, well-liked and didn't care what anyone had to say about my looks, personality or me in general. I had never really had any health problems - the only time I was ever in the hospital was because I had broken my arm and I hardly even had colds.
      One day, in gym, we were jumping hurdles and like always, I tripped over them. Well, after I had picked my self off the ground I felt servere pain on my ankle that make it feel like I broke it. I looked down to see a lump about the size of a baseball, but didn't worry about it since I could still walk. Well, everytime I hit it on a hurdle it hurt for about a few minutes. A friend at the time even acidentally kicked my ankle where the lump was and it hurt like hell or the rest of class.
     Well, soon I was on a plane to Calfornia to visit my mother for the summer. My brother declined to come because he wanted to work. So, it was me and mom. The summer went pretty good until middle of July, I believe. The idiots at mom's office decided to send mom on a buisness trip when she was supposed to be off for 2 or 3 days. Thus, I was left with a co-worker of hers and her daughters. During this time, the youngest daughter decided to kick me on the ankle.(I need to start signing waivers)Her oldest then told her mom when she got home and told my mom to take me to get the lump examined.
      So, we did. Mom took me to an air force hospital in Fairfield, CA - a half hour from where she lives. The first doctor to see me was Dr. (what a cutie)Lyons. He had me walk on the leg, asked when it hurting, etc. And unlike some doctors might have done, he sent me to get an X-Ray of my leg(I'm sure you all know what an X-ray is). After I did that, he took to me to get an MRI done(sorta like an extended version of the X-ray but shows the muscle too).
      This 15 minute appointment turned into an all-day thing. At the end of the day after examining and meeting another doctor, Dr. Chenaille, I remember my mom and I sitting in a room in the Pediatric Subspecialty Clinic. And basically, Dr. Chenaille(who turned out to be a pediatric oncologist or cancer doctor) told us the X-Ray and MRI showed that the lump had eaten through my fibula(one of the two bones in your lower leg), what was going through my head was "OK, maybe it's VERY excessive swelling". But, what Dr. Chenaille said was that means cancer. By this point, mom and I were both crying. That night, we called my dad and he booked himself on the first flight here. I've never heard any of my parents that upset before.
      Within days, my dad was here for my 1st biopsy - in which they cut out a small piece of the tumor in hopes to find out what kind of cancer I got. I had this surgery done at Luicelle Pakard Children's Hosptial at Stanford which is the 2nd best hospital in the country. And yet the surgery waiting room was filled with screaming kids and frustrated nurses. I almost dyhydrated because I didn't get anything to eat until after my surgery which ended which was after lunch.
      I was in a cast for week but on crutches for only two days.
      When my dad came down he brought down my computer from home - I was much happier and was able to tell alt.teens and my other friends about what was going on. One in particular was my "boyfriend", let's call him "Mr. F." Well, I e-mailed all of them that first day in the hospital - I don't remember Mr. F. answerng that e-mail or even talking to him throughout finding out my diagnosis(And when he did finally show up - no expliantion). This is why several months later I dumped him.A new friend made though was a guy named Kurt who happened to have joined the newsgroup only a few days after I left for California. Since then we have become best friends and I plan on visiting him in South Carolina this summer.
Throughout the next year, this computer would be one of my only connection to the outside world.

Crash! into the ground . . ."

     

The first biopsy they had done had not identified what kind of cancer I have. So, my dad came down the next month when I was schedualed for having the entire tumor(rapidly growing cancer cells) taken out. But, when I had a CT scan down on my lungs to try to and spot any spread of the cancer - on one of the many pictures they found a spot on one lung. The oncologist at Luicelle Parkard thoutgh that it might have been a tumor growing and they wanted to try and take it out before it did damage. It turns out what they would have had to do to that was collaspe my lung and I'd be stuck in the hospital for 5 days. At the last minute though, the guy who was going to do that surgery didn't believe it was tumor and just a spot. Since it hasn't grown since then - he must be right.
      This second biospy saw me saying goodbye to my fibula. I found out that if it was on tibia(the main support bone) then they would have amputated my leg. Although they only took out my fibula, we were told I would be able to walk again but not run, dance or anything like that because I would not have full use of my leg ever again and would always be limping. Boy, I showed them. I do have use of my leg and I can run and dance.
     Well, after they took the tumor out they sent it out around the country to different cancer centers - finally the MAYO clinic diagnosed me with osteogenic/osteoblastous osteosaroma - basically bone cancer, two months later.
      Around the time my cast came off, they got the diagnosis and Dr. Chenaille wrote my protocol. I would be given a total of three chemotherapy drugs - Doxorubicin(Adrianmycn), Cisplatin, and High Dose Methotrexeate(MTX). This was about August and we were all planning to start. I went through another surgery, this time at the air force hospital. I was having permenent IV put in my chest - called a port. They put it under my skin and it was connected with a major vein. I would have to "accessed" which means sticking a needle through the skin and into the port. Very painful.
     Also during August, I met Joey Gambino through the newsgroup. He is also one of my best friends and I am also visitng him this coming summer.
     Well, as September rolled around - a week after my port had been placed, we had a appointment to talk about treatment. Little did we know that day I would be sent up to the pediatric ward to prepare for my first dose of chemotherapy. Whoopie.

"Grrrrr. . . ."

     

Ever seen the movie "The Exorcist"? Or at least the scene when the girl's head turns around in full and spits out green stuff and she's all evil? This is what the nurses and my mother tell me I was like during my very first treatment(I don't remember any of this and perfer to keep it that way). Halfway through the 76 hours of chemotherapy, the nurses finally gave me ativan - a traquilizer. This experience was very strange for me when I fianlly realized I was done and they were rolling me out in a wheelchair, that I had been moved to a completely different room the night my chemo had started. Go figure?
     After this, I had been given a two-week break. My dad had come down to visit but sadly, the day he had arrived, just a few hours later - I back in the hospital. This time with Mucasitus(a side effect that is basically really bad mouth sores). Mucasitus would be a repeated problem cuased mostly by the MTX drug that is always painful - that's why they invented morphine.
     The next chemo I got was High Dose MTX. It's called "high dose" because the dose I got was literally 1,000 higher the regular cancer patient dose. This makes it extrememly dangerous even though I only get it for 4 hours as opposed to 4 hours of Cisplatin and 72 of Adrianmycn put together. Afterwards, for about 5 days I would be in the hospital getting Leucovorin which helps getting the toxicity level in my body down and the MTX out(letting it stay in too long would result in my organs being destroyed).
     By Monday though, my mouth was so swollen thanks to the mucasitus, I could not speak, take my pills or even drink. Back to the hospital! This time I believe was much better since they gave me a Morphine(PCA)pump which gave me a continous stream of morphine and if I was in extreme pain, I could push a little button and get a little more. I would get this everytime until my mouth was better - getting me off before I became addicted.
     This cycle would continue(the Adrianmycn dose cut by a small percentage to prevent such horrible side effects.
     Unfortunetly, I got an infection in February. How did we know? I started "spiking" tempretures of 105 and lower. In other words, going up and down. The funny thing is when I peaked, I really felt fine - not too hot at all. None of the normal anti-biotics worked at getting rid at this infection so they tried this one that I wasn't too crazy about. Though there was no real danger with it, it caused convultions (uncontrollable shaking) in some people and sometimes nervous system damage. I got off with have aching hands and feet. This did not work either. Finally, they took out my port(surgery #4 connected to the cancer) and after three days of more anti-biotics, I went home. I was in the hospital for a month and was pracitically holding the doctors hostage while they wrote my discharge orders.
     About a week later, I got a new port but on the other side of my body then started chemotherapy again. I was about halfway through by this time if my memory serves.
     This cycle of treatments went well - until the methotrexeate. So, I got extremely sick early. The amout of morphine and ativan they gave me was so much I don't remember that week and was told I had bladder problems, hallucinations, and was mean to everyone. Of course not under my infuluence - it's the narcotics people!
     I didn't get my port taken out again that month happily. But, when I left the hospital I was very off balance and wobbily. I was at home for about three days and then had follow-up that Monday. I felt really weak, even to the point where I couldn't walk 5 steps without getting out of breath. OK, so maybe I needed a blood transufsion - no biggie, it's normal. Just my luck that I had a temp of 103. "Upstairs, my weaving friend." This time I didn't mind, Gloria was tired and the hospital is the place to get sleep.
     My ports kept getting clogged and I kept getting re-accessed everyday. I wasn't really hungry and they started this anti-biotic on me called Amfaterisyn(sp?) also called "Amfa-terrible." There was no real danger with this one but no one had given it for 4 years in the ward so they were nervous. My port was eventually taken out again. That time was the most awful surgery I've ever had.
     They gave us about a half hour's notice - and didn't even use the Operating Room, some other place. All the doctors from the ward came down to help and watch - the anestesia was local(just where they were cutting) and sedating me to the point where I was awake but didn't remember or care. Boy, don't I wish it worked out that way! I was awake and very unhappy might I add? But they put in a pickline - a temporary port that comes out in your arm.
     After the surgery, they noticed a lump on my neck had grown bigger - and more painful. They decided it was an "abcese" or basically a infectous lump filled with puss. So, they sent me down to surgery again even though I was still traumatized from the day before. This time they totally knocked me out. My responce? YAHOO!!!!!!!!!
     The after pain was bad though. I couldn't move my neck to turn my head straight or to the right even without extreme pain. This continued through Easter.

"Quicker than a ray of light. . ."

The day after we got a call from my mother's mom. My great grandmother had been diagnosed with cancer. My uncle also had relapsed with cancer sometime when I was diagnosed so this was a blow to both of us(especially since chemotherapy would only prolong his life). Granny's cancer was so far along they had no idea where it had come from and told us she would not live to her birthday in about week(May 5th, mine is May 6th). She showed them! She died around 11 am on May 5th, 1999. Way to go Granny!
     I still had no port on my 15th birthday wouldn't have one until 3 days later. This time we got a boviac. It's not under the skin like my first two but has tubes hanging out of my chest. They usually put these in younger kids because older people don't like the hanging tubes. Personally, I have no problem with it - beats getting stuck with needles everytime I'm admitted.
     Well, a week before my second to last treatment, I got a line infection had my broviac taken out - this just proves I am inhibited by the spirit of Charlie Brown. I then haa a pickline(like a broviac in the arm) for my last treatments. There is a light at the end of the tunnel!
Now, I am all done with therapy and all I have are my follow-ups.


Frequently Asked Questions

1) Are you going to die?:There is always a chance but I have a feeling I'm not and that my cancer is gone.

2) What is chemotherapy exactly?: Basically, just poision used to kill off bad cells(but some good cells too). That is why hair falls out, you get nasueated, and you can't go out a lot when getting most kinds of chemo.

3) Did you need a bone marrow transplant?: No, for the cancer never reached my bone marrow though it is weakened by the chemotherapy.

4) Why do you need a blood transfusion?: The chemotherapy kills off cells as I said. Thus, my red blood cell counts go down and I need a transfusion so I am not as weak. I sometimes need a plalet transfusion. Plalets are what clots your blood. Without them, you can bleed to death.

5) Are you going to get radiation?: No, radiation doesn't effect my type of cancer.

6) Can you take any medications?: Not any that my doctors don't approve of. I do take calcium(those Viactiv chocolate chews), Magnesium suppliments(those help your muscles to work) and potassium. Those suppliments ae thing I lose to chemothereapy. I also take GCSF - sorta like a white cell fertilizer. I take it every night(except while on chemo or two days before my adrinmycn in a shot. Yes, a shot with needles.

7) Will the cancer be totally gone when your done?: Depends. If my cancer doesn't come back within 5 years, then it won't come back again.

8) I had a friend with cancer and she didn't have any infections or anything like that so your doctors must be doing something wrong: I assure you my doctors are doing everything they can for me that is right. All cancers are different, and everyone reacts differently. It doesn't nessecarily mean the doctor is doing anything wrong if there is an infection.

9) What should I do if I or someone I care about has cancer?: SUPPORT THEM! Talk to them about it and it will make them feel better. People may tell you or you may feel that not talking to them may help them, but knowing what to expect is much better. You don't know how much it hurts when someone hardly acknowledges your existence when you are sick. In short: Be there for them.

10) "You went out without sunscreen didn't you?": No. That is skin cancer. There was no way I could have prevented this. Most childhood cancers do not have any factors that are preventable.

11) I heard that eating _________ could keep me from getting cancer. You must not have eaten it.: When magazines and commercials say something may help reduce the risk for cancer, the keyword is "may". Usually the only cancer it can help prevent are colon cancers, protstate and etc. The only *known*(proven) preventable factors is smoking and drinking. The only proven hereditary cancer is breast cancer. It doesn't hurt to eat those foods anyway.

11) Can a good diet help? (i.e. no junk food): It can help, but because you eat pizza and all that will not make you better or increase your risk really or else my doctors would be walking, talking cancers.

Teens With Cancer - A little Intro for You *** Cancer Patient Links***Melissa's Site***Diary of a 17 Yr. Old Osteosarcoma Survivor(Really good site)***The Oncology Connection

Any Questions?

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Copyrighted FOREVER by Gloria

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