Who Am I?

So, who am I? This is actually a question I think I have the answer to. I’m Hope – I’m me, and I’m pretty happy with that.

I am 19 years old, 4’10” in my favorite (at the moment!) pair of heels, 75 lbs, and currently bald, although there’s a bit of fuzz starting to come back. I guess none of this may be too typical of a normal 19-year-old, but hey, I never claimed to be a normal 19-year-old. I have many of the same interests as any other 19-year-old female, but I also have something else many of those same teenagers lack: cancer.

It started when I was 7. I would complain to my parents about feeling sick, but it wasn’t very frequent yet. Plus, it usually happened at night, and I was notorious for trying to get out of my bedtime! But then it started to become more frequent. I would have bad stomachaches and I threw up a lot. By the time I was 10, I was starting to feel sick almost every day. There were foods I couldn’t stand to eat. I couldn’t gain weight. I was 60 lbs.

I was taken to many doctors and never received any answers. Some said it was all psychological – but I continued to throw up. I even went to psychologists, and they couldn’t find anything wrong with me either. I went to nutritionists and food therapists – but the weight continued to drop.

At age 11, I was in physical pain every single day, and I was very weak. I continued to go to school and see friends – almost all of whom didn’t know anything was wrong because I was very good at hiding it – but I did have to quit two of my favorite activities: soccer and horseback riding. I saw more doctors, who often threatened to admit me to eating disorder clinics because they couldn’t come up with a better reason for my extreme weight loss. They refused to believe that I ate without intentionally throwing up, and they even blamed my parents for not noticing the “real issue”.

Then finally we found a pediatrician who believed us when we said that there was something physically wrong. He agreed to send me off for more extensive medical tests, including a colonoscopy/endoscopy, x-rays, and an ultrasound.

It was the ultrasound that did it. Maybe that’s why I’ve never liked getting ultrasounds, even though they’re supposed to be one of the easier tests. No, actually, that’s probably not it; I definitely don’t like them because I’m the most ticklish person in the world and having that wand rolled over my stomach is torture for me. But maybe they’re even worse because my very first one resulted in the worst news I’ve ever received.

We didn’t get those results immediately. The doctor is given the results first, to go over them. Since then we have learned that, generally speaking, the longer it takes for you to get the results, the worse the news. If it’s bad news, the doctors have to consult with other doctors and specialists to make sure they’re reading it right, and they usually are.

Our pediatrician called us and told us to head to the hospital. He only told us that they found something on the ultrasound and that we should get it checked out at the hospital – but not to expect anything good. We left that night. I didn’t return again for quite a while.

After a biopsy of the mass, we were told it was cancer. My parents were crying while they tried to explain it to me. I understood. I also didn’t cry. There was sadness, and fear, but there were also two things you might not expect: relief, and hope. Relief, because finally there was a name to what I had. It was not an eating disorder; it wasn’t all in my head; it was real. We didn’t yet know what kind of cancer exactly, but cancer was still a name, and things with names can be treated. And the hope – I don’t know where that came from. Where does hope ever come from? I don’t really know if it’s something that’s always there, or if it springs up with the bad. Or maybe, because I AM Hope, it’s something I in particular just can’t escape! But I think there’s more to it than that. In any case, it was there, and I felt like I could keep going. That feeling really comes in handy.

Eventually, we learned it was neuroblastoma. “Neuroblastoma.” What the heck is that?? Even today, I’m not sure I can completely answer that. I do know that it is a cancer of the nerves, not the brain, as you might think from the “neuro-” part. What it meant for me was that there was a very big tumor – the size of a grapefruit – mostly in my abdomen, pressing against many of my organs. There were many small bits of cancer in other parts of my body too: legs, back, neck. I was kind of littered with it.

Since then, I’ve been through many, many, many treatments. I don’t think I could even write them all down. There’s been chemotherapy and experimental treatments and radioactive medicines and oral chemo and more surgeries than I could ever remember. I still have to work to keep up my weight, and it’s not as simple as “eat a donut!” Because of the way the cancer was pressed against so many of my organs, pretty much everything inside me is all screwed up. I literally can’t seem to gain weight. My body doesn’t seem to absorb fat right. I also didn’t go through puberty because of my low weight and the many chemos I have had. That’s why I’m still the same height I was in third grade. I lost a good portion of my hearing from a certain chemo that destroys the hair in your ears that feels vibrations. I will never be very strong and I will always have to work on my stamina and energy. But even with all that, I still feel good. 75 lbs. is better than the 60 lbs. I used to be. I can swallow pills now. I am no longer scared of needles. And I know that I am stronger in spirit and mind than I ever thought possible.

So, who am I? I’m me: 19, short, skinny, bald, and living with cancer, but I am really truly living.