Leukemia- the aftermath

When I was in the hospital or at home in bed, I often dreamed about the things I wanted to do with my life. I dreamed of becoming a professional athlete like my hero Lance Armstrong and travelling the world to mention my big dreams. But I also dreamed of relaxing in the sun, going to school and the pool, eating ice cream, playing with my brother, having a boyfriend, seeing the ocean, having sleep- overs at my friend's house, running till my lungs beg for mercy, sleep as long as I wanted to without nurses waking me, eating a whole pizza, skiing, laughing till my tummy hurt, singing, dancing... The list could go on. I just wanted to do what every other teenager does.

But it was different. When my treatment ended there was no red carpet and nobody was there to tell my how freaking amazing I was. When I went home I was barely able to walk. I could not eat and a feeding tube was in my tummy. I still had to come back to the hospital quite frequently to get checked and I had to take a dozens of pills every day. Recovery is slow and painful. In the hospital I had patience. Now, I wanted to start living again NOW. But it is a slow process. First I only walked up and down the street and drank a chocolate milk every day and maybe some yoghurt. VERY slowly my walks got longer until I was finally able to jog short distances. Almost one year after I finished my treatment I was able to run my usual lap. The last time I had ran it I was 13 and a half, now I was almost 16. Like I mentioned before, school also was a slow progress. While I still exelled academically, my friends were foreign to me. They were so.... childish and careless. I had matured. I had lost that carelessness. I was constantly worried that the cancer might come back. You only plan your life until the next scan. Then suddenly the scans are half a year apart. You do not know how to plan that far. The concept of maybe having your entire life (60 years or more) ahead of you is ....strange and you have to get used to it again. While having cancer you have something to do, even if it is only vomitting and sleeping. Starting to live again is often so much harder. All the dreams I mentioned above do not happen instantly. It is a long, long (painful) road and it takes work and stamina. Natural things like hanging out with your friends have to be learned anew. In the hospital everybody knew what I needed and what I could do. Now, I had to learn how to be a teenager again. Sometimes I had to tell them to wait for me. I had missed the time where you start dressing up, start to do fancy stuff with your hair and fall in love for the first. To me clothes and boys were secondary. I was happy to simply be alive that day and usually to exhausted to even start to care about celebrities and clothes. Until today I sometimes just do not care too much about these things.

Sometimes I ask myself in how far my cancer changed me. Maybe I would be the more outgoing person I wish I was. But then I look at my brother who, apart looking completely different, is not very outgoing as well and believe that we are just that way. Yet, I am certain one thing was changed. I do have a fear in me that will never go away. I fear a lot of things. Often I am so scared I can not do what I am capable of. I have an immense fear of dying when I (hopefully) have kids one day and am generally scared of my friends and family dying. Like, I said, I lost that carelessness.

Yet, I was not the only one who was changed by this. My family, my brother, my mom and dad, have this fear as well. Maybe that's the reason we are so close. Whenever I get hurt, my mom freaks out. I can see it in her eyes, her body language. She is more relaxed whenever my brother is sick. I know that for many years my mom came into my room and to check on me and cry. I pretended to be asleep, but, to be honest, I cried with her.

Although my chances of getting any form of cancer are as high or low as of a normal person. This illness will never leave me. And if I ever should, there are still eight little pills every morning to remind me...for hopefully a very, very, very, very, very long time.

Family time

Yesterday my family (parents, brother and me) went to Frankfurt to visit my three cousins. They are my dad's sister's kids. My aunt died 7 years ago from breast cancer, about the time I finally started to feel like myself again after leukemia. Tough times for our family. But we make apont to meet once in a while.

So, after my brother finally got out of bed AND dressed we made the one hour drive to Frankfurt. We quickly checked out my youngest counsin's flat and then went to visit the "Main Tower" (the river Main flows through Frankfurt). In front of the tower they were shooting a scene for a film. They repeated this scene about a million times. They were shooting it as we went up and were still shooting it when we came down again after an hour. The scene basicly consisted of a guy standing in the open door of a truck and throwing money on the street whith the police following him. The whole street was covered with fake Asian money. Of course I collected some :)

Ok, so we wnt up and just enjoyed the view and the nice weather.

sky line

white shirt: my grumpy bro, my beautiful mom and my awesome dad

river main

After finally being allowed to leave the building (a swiss guy from the film crew was very stressed out by all the tourists constantly leaving the building) we went on a long walk through Frankfurt and to the Palm Garden. The flowers were nice and everything but we had really walked a lot so we just relaxed and enjoyed.

The day ended with cake and more conversations in the flat. When we finally got home I was exhausted.

PS: When am I finally going to buy myself a camera???

Chemo and food

The day I got admitted to the hospital to start my chemo therapy my new doctor friend talked about a lot of details of my upcoming therapy. I did not care. He told us that my immune system would be shut down so I had to be careful around people. Again I did not care. Then he talked about food. Because of my non existant immune system I was not allowed to eat anything that was not cooked and our fridge had to be cleaned once a week. He then listed the things I was not allowed to eat. He mentioned fruit that cannot be peeled and salad. I freaked out! Complete meltdown. I can loose my hair, be in the hopsital for months, but not being allowed to eat salad and fruit makes me cry like a baby. You have to know I love salad. There is hardly anything better than a salad bar and for the next months I was not allowed to eat salad and strawberries. I devour strawberries!!!

The first months or two I did not eat any, mom would not let me. Then one day as we were driving home from the hospital and I was in a particular festive mood. Suddenly my mom stopped in front of my favorite salad bar and told me to get out. I was confused and told her I could not go in because of the many people with their many germs and I was not allowed to eat salad anyway. She just informed me that we would go in, sit as far away from the other people as possible and eat salad. But I was not allowed to tell anybody. I.was. in. heaven. I got myself a large salad and ate it all (I hardly ate anything at all back then). Luckily, my body tolerated it all. This was a huge step for my mom who usually sticks very tightly to the doctor's rules. However, this became our new tradition. Every time my mom picked me up from the hospital we ate a salad. It became my motivation. I am so thankful that my mom disobeyed the doctor that day. Sometimes you just have to break rules :)

Towards the end of my therapy I completely lost my appetite and since I never had my fat to loose, I got a feeding tube. I hated it. It was constantly infected and I was so happy when it was removed after three months.

Hope

Leukemia and school

When I was diagnosed I was 13. Difficult age. I was in seventh grade and until 6th grade I had always loved school and had always excelled in this field. I was a very ambitous student, but not a nerd. I had quite a few friends. My best friend at this time somehow chose a new best friend in autumn (they later both became teen moms :)). I went through a little depression phase and stopped liking school because my former best friend and her new friend started bullying me. It hurt. A lot.

When was diagnosed I was not really sad that I would not be able to go to school in the next few months. In the hospital you can get about 12 lessons per week, depending on how fit you are (you seldom get all 12). I wanted them all. I was scared of having to repeat the class because of my illness. And I tried hard to get them. Even if I could not really concentrate and had to vomit 3 times during my lesson. My parents became my additional teachers who worked with me after the "real" teacher had left. In Germany you have quite a few subjects. Your main subjects in seventh grade are Maths, German, English and a second foreign language, in my case French. (Then you have biology, physics, chemistry, politics, history, music, art depending on which grade you are in. My dad did biology and chemistry with me, I skipped the rest.) I have always loved English and any other language. But at this time tried to get away from maths. In the beginning the teacher always asked what I wanted to do. I always wanted to study one of the languages. Soon she realised I was quite good at them and rather needed help in maths. Oh, how I hated it. When I was not in the hopsital a different teacher visited me at home.

School was my way of escaping from my illness. I could not really much sport except my walks. Some kids are not in the mood to do school during this time at all which is completely understandable. For me it was extremely important. Yet, I did not visit my school during that time. I did not want them to see me this weak and without any hair. My true friends visited me sometimes and brought cards. I always crossed the names of my bullies out.

I went back to school after Christmas in eighth grade. I was TERRIFIED. I was scared of my class mates' reaction. I still looked quite different and did not want to have a pity party thrown. For the past 10 months I had had the whole attention of a teacher and wa able to work at my pace. Now I had to sit still for the entire day. The beginning was tough. Everybody was very careful with what they said and did in my presence. And I just wanted to be normal again so bad. The teachers were amazed by how much I had managed to study during my time away and always praised me. For me this was hard since I my grades were not as excellent as before. I never really listened to them. Finally, in grade 9 things got normal again.

J's story

(I already posted this a month ago, but to have all the leukemia posts together I will post it again)

I was one very sick girl and one day while recieving more chemicals than I ever thought were good for me I met a very sick boy. OOOOH! I never felt inclined to make friends in my prison called hospital since I mostly spent my time sleeping, vomitting and driving my family crazy. Usually in this sequence. Sometimes they offered to do crafts in the afternoon where one could meet other kids, but crafts and me....does not work. However, J was a different case. We met and became best friends. Whenever we felt up to it, we visited each other's rooms. We talked about everything. Our families could only stay during the day, during the night we were alone. During our conversations we made plans what we wanted to do with our lives once we got out of the hospital and he was the only one I talked to about dying. This was probably because he was the only one who could completely understand what I was feeling since he was walking the same path. We also made up the vomit charts (what not to eat and what to eat during chemo.)

EAT: 1. apple sauce because it comes out easily 2. Banana but chew carefully 3. small noodles with a lot of sauce since they don get stuck

DON't EAT: 1.gummi bears since they get stuck in your throat or even nose. hurts! 2. chicken and fries (basicly any meat) because it is hard to get out and the smell makes you even more sick 3. fruit (except banana) since they get stuck and they burn like crazy in your throat

One day I sat in his room and we talked about the boy and girl thing. We both agreed that we never felt romantic about each other. He was just a VERY good friend. Still, he wondered how it felt to be kissed. He admitted that he had thought about it a lot recently and then, without me expecting it, he asked me to kiss him. I agreed. I can't say it was the best kiss ever, but it was nice :) We never kissed again. Our nurses would have freaked out if they had known we were basicly exchanging germs.

On my last day of chemo he came to my room (he had already finished his last round) and gave me a huge hug and said we would start living again now.

However, while I slowly started to participate in my normal live again, his cancer came back. His fight started anew. I went to visit him as often as I could and felt gulity for being healthy each time. J fought as hard as he could. He got a cell transplantation which meant that nobody could touch him for about a month. But after several months it became apparent that everything the doctors had to offer would not help. He was given 3 months to live. My heart broke that day. I told my mother that I wanted to die instead of him and I meant it. Living without him was not an option.
During his last weeks my parents took me to visit him every weekend (2 hour drive one way). It was, without a doubt, the most horrible time of my life. I. could. not. loose. him. Before he died he asked me to take care of his parents, whatever this meant. And I told him that I wanted to name my first son after him. I still want and it was one of the first things I discussed with Hendrik. He made me promise that I would still live my life without him and wait a very long time until I came to see him. He promised to watch over me until then. The day he died I lay on my bed crying all day. The pain was too much to bear.

At the next scan I did not care about my results. If they had shown that my cancer was back, I would have happily taken it. While my heart does not heal and the pain will never subside I learnt to live with it. I visit his parents on his birthday and write emails. I once asked them if they did not hate me for being alive instead of him. They replied that while it hurt them to see me and makes their heart ache for the things J is not allowed to experience, they always regarded our cases as two different ones. They said they were thankful that at least I got to survive.




It's never goodbye, it's always see you later!

Leukemia and God

Many people believe my relationship with God was totally changed by my illness. It was not. Of course I had my begging sessions with God . I asked Him to PLEASE let me live, to keep me from vomitting, to protect the other patients, give my parents and brother strength... But to me my healing is not a miracle and God did not heal me. At least not directly. I believe (and this was also part of my prayer) that He allowed us humans to aquire the wisdom to heal such terrible diseases. Yet, one thing totally changed. I lost my fear of dying. I am still scared of the moment I die and the torture I might have to face in the weeks prior, because I know it hurts. Watching J suffer in the weeks before he died are my darkest memories. But I know that afterwards I'll be safed. No more pain, just joy. That is why I believe having a relative with cancer is worse than actually having cancer, because I knew my future was bright either way.

One thing that bothers me and I feel VERY ashamed of is the fact that I somehow make God responsible for letting J die. I somehow thought it was His responsibilty to let him live, too. I cannot explain this and I really thought that this feeling would subside, but 7 years later I still struggle with it.

chemo

Part 2 of my leukemia story. If you are interested read part 1 first.

During the year of 2002 I was always either in hospital having a chemo or recovering from one. Chemo looks so innocent. Just like another IV. It makes you vomit, makes your bones burn, makes you loose your hair and makes the skin in your mouth turn sore so you could not even eat anything if you wanted to. Chemo therapy turned me into a child again. I was 13 and so proud of my independence. Now I needed my mom or my dad for everything. There were days when I was to weak to take a shower myself. So my mom had to shower me like a baby. I felt so ashamed. Yes, my mom had seen me naked many times, but still. I needed my privacy. When you have chemo your body does not belong to you anymore. It is public property all around the clock. The nurse wants to poke you with another needle. Another nurse cleans the port. The next nurse makes you take your medicine , takes your temperature and weighs you (Why do they have to weigh me every single day?)Your mother wants to change your jammies because you have worn them for far too long (in her mind of course). And if you lived through all this, the doctor comes to tell you that they have to do a bone marrow test. This is when you start crying. Ok, they give you some happy pills but it still hurts like hell to poke a needle IN your hip bone. A needle that is as big as your little finger. At least. Hell on earth. The rest of the day you watch your IV, vomit, cry or watch TV. In the beginning of my chemo I was not talking to anyone. I just stared at the TV screen. One day my dad had a brillant idea. He gave me the book of Lance Armstrong. And I turned off the TV and read it. The entire book on one day. I finished it at one o'clock in the morning with a small torch underneath the covers of my bed. The next day I read it again. I don't know how many times I have read it. 20-30 times sounds about right. I knew it by heart and recited it for everyone who would not believe me. Lance Armstrong (doped or not) became my hero. He was the living proof that you could survive AND have a great life afterwards. When I was strong enough again, I got a very nice Trek bike and rode (and swam) my way back to life.

Chemo in the hospital also means that you are lonely. Especially at night. My mom quit her job to be with me, but sometimes she had to go home and at night she could not stay. This was when I talked to J or had my crazy thoughts and dreams to myself. In my chemo breaks I was allowed to go home. If I was not running a fever because my immune system was non existant. Being home felt so good. No needles, no doctors, no nurses! Only mom making me take my meds. Like my hero Lance I went on a walk (almost) ever day. The rest of the day was spent in front of the TV or lying in my bed reading. (I cannot imagine how it would have been if I had owned my own computer. Probably not good).

My Leukemia story- how it all started

As mentioned before, I was diagnosed with leukemia ten years go. I have been planning to write it all down before, but I never really did. Only parts of the whole drama. So, I hope I can stick to my plan now.

In autumn 2001 I felt strange. I was in seventh grade. My best friend at that time was angry with me for reasons I never fully understood. Additionally, my body was changing; I was becoming a woman. I was not too excited about it. I felt not ready. I ran track, but I did not like my coach nor did my brother. Around Christmas we quit. I did not feel well. I was exhausted, always tired and I sweated like crazy, especially at night. I was ashamed of my body and tried to hide it. Around Christmas random vomitting was added to the fun. Once, I threw up at school. Extremely embarassing! In January I got pneumonia. I slept for almost two weeks; in my brother's room because I had vomitted on the carpet in my room= temporarily out of order. After I had battled the pneumonia, I went back to school and waited to grow stronger again. Instead, I kept feeling sick. We went back to the doctor who took blood and was very friendly and made a lot of jokes. When he called us back in after he had gotten the results of the blood test, the smile was gone from his face. He told my mom and me that I had leukemia. Acute lymphoblastic leukemia, the most common kind,to be exact. He told us to go to the hospital for further tests and treatment the next morning. When he left the room my mom started sobbing uncontrollably. She crumbled into a ball on her chair and cried like I never had seen her do before. Of course I knew what she was thinking. As a little child I had asked my parents if one could survive cancer. They said, no, most people die after some time. Eventually, we came home where my mom told my dad and my 11- year- old brother about our afternoon. I went to bed and slept some more.

The next morning we went to the hospital where I met more doctors, bald kids and needles. I was cranky, I did not want to talk to anybody and just wanted to be left alone because I felt so tired. Finally, I was allowed to lay in a bed. It was not my bed at home, but I did not care. I could sleep. Forget all this madness around me. While I was sleeping doctors decided that I was supposed to have four cycles of chemotherapie followed by radiation. When I woke up, a doctor in his forties sent my worn out parents out of the room and started talking to me. First, he asked me questions about school, my hobbies and my family. I told him that I felt that my parents did not believe that I would be healed. He then gave me the basic information about my sickness. He said that my survival rate was not bad at all. During this conversation I decided, with a little help from this amazing doctor, that I would live. As easy as it sounds, he told me to believe that I would live until, if, I was proved wrong. When my teary parents came back into the room, I told them exactly this. For the next months or years, the believe that I would be able to win this fight, never changed. I knew I had to fight like crazy (never did I expect that it would be so hard), but I was convinced and this is what I told everybody:" I have leukemia and it sucks, but I AM GOING TO LIVE!!!!

I wish that it would have been that easy for those who loved me. While I was mostly drugged up and sleeping during the next months, especially my parents and my brother had to deal with sleepless nights and the thoughts what if... ? To this day I believe it is easier to have cancer yourself than having a loved one who has it. This is pure torture on earth.