myhistiostory

For all of you that know how this all progressed don't really have to bother with this part ;)

November, 2010

It was a Thursday. I remember it like yesterday, a cozy Novermber Thursday evening. I was on the phone with a friend, laughing, talking, and playing with my hair. I felt a bump on my head. I told my friend laughing. I tried hard to remember if I had bumped my head lately. Nope, no memory of that. You know me, I’m a clumsy ass...I mean, I've literally fallen off a bus...yes..OFF A BIG RED BUS!!! So a bump here and there isn't unlikely in the life of me.

Christmas-January, 2011

Time passed and the bump remained and painfully so. I couldn't sleep on the left side of my head. After a well needed vacation in Egypt over Christmas, I went to the hospital and got a scan. I didn't think much of it.

February

Weeks later, I got a letter home. It was freezing that day, chilling. "bla bla bla....high suspicion of Langerhans cell histiocytosis or a neoplasmic mass." WHAT THE DUCK? (Yes, I love saying that expression!!!). I called my dad, read the letter. He couldn't believe it. I didn't understand. He made me read it over and over again as if he had no memory of hearing me the first time. "Come home immediately, H." In my world, he was just being dramatic. He wasn't.

All I really remembered was my dad showing me the scan of my head on the computer. As he scrolled down, he pointed out the piece of my skull missing. Imagine someone took a bullet and shot it through your head with no exterior wounds, just a clean hole through the skull. He explained what the letter said. Langerhans cell histiocytosis is a rare disease of the immune system. A neoplasm is a tumor. So basically, my alternatives were Bin Ladin or Palin for president of the world (JOY TO MY LIFE!!!). Let’s not even get into the fact that I got this letter sent to me, at HOME, ALONE!!! I was in shock, I couldn't speak. Every word I said was like talking under water. I cried. A lot. For two days straight, I cried.

So a few biopsies later, the Dr's confidently diagnosed me. Langerhans cell histiocytosis (yes it's a mouthful to read). At first I didn't really understand what it was...hell, I could barely pronounce the damn name. I was too busy dealing with the whole ordeal. Reading about it didn't really make any sense either. It took a while for me to understand. But I was naive at the time. I mean, if I was diagnosed with such a rare disease that could have serious consequences, surely the doctors were going to prioritize ME (HELLO!!! CENTER OF THE UNIVERSE SPEAKING!!!!). They would take care of everything. I laugh just thinking about it, I chuckle.

They did NOTHING!!!

March - June

So began the journey of frantically calling doctors, trying to find the right doctors to deal with this, and the worse part, having to explain the entire story from A to Z to every new person I spoke to. So, I did the research. After all, I am a researcher, that's what I do. Finally, I took all the most important research articles, from the high impact journals, the most cited ones, and highlighted the most important findings in each article. I walked up to my doctor and smacked the articles on his desk, and told him "There, I did this for you. Now what are YOU going to do?" Finally, I was immediately sent to the Oncologist and he did a full body scan of my bones and a bone marrow biopsy. The bone marrow biopsy was done to exclude the possibility of leukemia or lymphoma (LCH belongs to a family of diseases, usually diseases that derive from the bone marrow). The results came back negative, I was free of other cancers, and the scan came back negative of other lesions. I felt relieved, I could breathe again. All I had to do was to have surgery on my skull. I chose to postpone it for after August though for personal reasons. It would all be over soon. Or so I thought.

A couple of days after the bone marrow biopsy I started feeling an excruciating pain in my hip and leg. It was the kind of pain that takes your breath away. Every night, I'd feel the pain. I went to the ER, they waved it off as an inflammation from the bone marrow biopsy, "Don't worry, it will disappear, just take a few ibuprofens and you'll be fine." I went home thinking that would solve all my problems. It didn't. As time went, I kept calling the oncologists at the hospital and complained about this horrific pain, the pain that made me want to put a bullet through my head to spare me. "It's ok H, it's probably just an inflammation, it will disappear in time. But just in case, we'll prescribe you some codeine to relieve the pain."

July

Time passed. The pain didn't. It got worse. I had a gut instinct that something wasn't right. So, on my vacation in Egypt, I got a CT and an MRI scan done of my hip and pelvis. "H, your histiocytosis has spread to your hip, almost half of it has dissolved." I didn't believe what the Dr's there were saying. I honestly thought they were being stupid. They weren’t. I was in denial. "Nooooo, I'm telling you, I had a bone marrow biopsy done recently, it's an inflammation!!!" In the heat of my frustration, I grabbed the results and went to my cousin who's a doctor to take a look at them. "H, I'm sorry, but a bone marrow biopsy is usually very small and it's taken in the pelvis. This is your hip bone. They're far apart. And a bone marrow biopsy is usually just about 1cm wide, this lesion is 5x4 cm wide."

August

Nervously, I contacted my Dr over mail and sent him the scans. He booked me in immediately for an appointment the day after I arrived in Sweden. "This is not good, H. This lesion must have developed since your last scan. This means it's become malignant, it's spreading." He started talking, lingering around with his words. That's never good. "Just tell me, what is the treatment?" "Chemotherapy, 6 months". I cried.

I walked out of his office with four legs. He wanted to put me in a wheel chair first but I refused. So he gave me two crutches to walk on. He forbid me to go to London for one of my best friend's wedding. He forbid me to go on a work-trip to Croatia. "Stay put, stop moving. Your hip is ready to snap. You're 27 years old, you shouldn't have a hip replacement at this age."

I called my friend, I was in shock. I tried to laugh it off, but inside there was a child that was terrified. How did this all happen to me? When did this all happen? Why?

I went to the two people I knew could calm me down immediately. My professors. I cried, I talked, and I laughed. And they let me. It was exactly what I needed. They supported me, made me feel better. We talked about it all, everything. We joked about it. We talked about ways to cope with it. And it helped. And honestly, I think that that conversation alone, is what made me feel OK right now. Sure I still have ups and downs. But the downs aren't so far in the gutter. They pass. And I bounce back faster. I see things in a new light now. A positive light.

So here I am. 9 months stronger. Three seasons wiser. A lot more happened, trust me, A LOT MORE!!! This was the SHORT version believe it or not!! I'm writing this blog, mainly to vent and to express myself. I need to. It is what it is. I'm not the type that gives up easily. I will cry. I will laugh. I will think it's unfair. I will develop. I will have my dips. But the best part of it is that I will come out of this, stronger, happier, and healthier, better, and fit for fight. It's been quite the journey, but at least I'm half way through.

At least I can put it on my CV. I've had chemo before the age of 30. What have YOU done before you turned 30? MUUUAHAHAHAHA! Yes, get use to it. Anyone who knows me knows I have a very twisted humor!!

Good night!