EPISODE III: Revenge of the T-Cells

Though I would probably be on the Dark Side ;)

War! The Unicorn Universe is crumbling under attacks by the ruthless Cancer Lord, Count Non-Hodgkin. There are heroes on both sides. Evil is everywhere.
In a stunning move, the fiendish bacteria leader, General Infectous, has swept into the Unicorn capital and kidnapped Chancellor Healthyhorn, leader of the Glitter Senate.
As the Separatist Infection Army flees off the besieged capital with their valuable hostage, the mighty Lymphoma Board creates a courageous plan to save the Galaxy and Chancellor Healthyhorn.
One brave Unicorn named Glitterella leads the desperate mission to rescue the captive Chancellor....

What´s more fun than having cancer? Riiight, having cancer and being harassed by a bunch of Nazi nurses! I arrived on Nazi station (I think it´s really called "Station for stem cell transplantation and leukemia therapy" but I think Nazi station is way more catchy. I left them a proposal letter in the mailbox, let´s see what happens! :)) two days after my inital diagnosis. So far I was told I had a Hodgkin Lymphoma. Here´s a tip for you- block Wikipedia and Google on every available device from your family! This isn´t helping! They get scared and start annoy you and the docs. Well at least if they are a like my family. ;) My demon was still rampaging through my body giving me horrible night sweat and fever and pain. I still couldn´t eat and my spleen was big like a football.

It´s nothing, really, just a cough!

While I was waiting for the results of the bone marrow samples I wasn´t idle. I dragged myself to a CT, twice to the MRI (body and head separately), ultrasound and lung-function test. Okey, I got dragged. In a wheelchair. And to be honest... that was awesome. Especially since I got wrapped in complete body protection gear with surgical mask. Nothing lightens up the mood in the waiting room full of patients if you sit in your wheelchair, looking like Deathh himself and cough like a person with ebola! Gnahaha. ;)

And then on a bright sunny day, it was a good day cause none of the Nazi nurses had made you cry (in my case usually out of anger ;)) and you and your cell mate were laughing and making jokes about wigs ("Why are you laughing? What´s so funny? You´re making too much noise!"), Dr Asian Dude came in with a grim face. The results were back. It wasn´t a Hodgkin Lymphoma. It was a rare form of Non-Hodgkin Lymphoma. We had a therapy plan. And so much more to do.

I often felt like in an episode of House, M.D.!

So I started talking with many many docs. Anesthetists, surgeons, gynecologists, oncologists, hematologists, whatevergists, elucidating the procedures to be done, the risks, the benefits, the side effects, "infection, sepsis, death, ach you know the deal! Please sign here that you understood it all.". Uhuhuh. Sure. *scribble* Wait, did you say death?! Every day a swarm of docs passed through our cell, smiling and making optimistic comments at the side of the bed of my cell mate (she really did have a Hodgkin Lymphoma) and then turning around to my bed...falling silent. Staring at their feet. Shuffling. Say something. Anything. Please! But apparently they were fresh out of optimism and great statistics. And since I´m such an interesting specimen they also herded as much students to my bed as they could find. "Let´s have a look at that patient with this strange, rare disease!" I was a fucking freakshow. (They are lucky I didn´t start to bite them.)

I soon had my port implanted and my ovary cells extracted. I received a pre-chemo therapy, which was one administration Vincristin and 5 days Cortisone. On 16th March I finally received my first real chemo. I will always remember that the day started reeeeal good- chocolate pudding for breakfast! Aaaaaaawesoooooome!!! I was so happy on that day, I danced around my cell (receiving again stupid comments from the Nazi nurses). Finally I was taking up the fight against my demon! He had the power over me for too long now, it was time I punched him the face! Again and again and again.

Two days later I was done with the infusions and sent home. I couldn´t believe it. After almost four weeks of hospital, of uncertainty, sleeplessness, of being tested and probed like a lab monkey and of feeling weak and sick, I was allowed to go home. To my own bed! Delicious food (first stop- favorite Greek restaurant! ;))! My bathtub! No more Nazi nurses and docs!

I finally knew what I was up against. And I was ready to fight dirty.

EPISODE II: Attack of the Cell Clones

Delain playing at 70000 Tons of Metal (Jeeez, I really suck at taking fotos! XD)

It was during the second Delain show. I was there with friends when all of a sudden I got soooo tired I couldn´t even stand, my breath went away and I almost lost consciousness. I murmered something about not feeling well, that I needed to sit down. And so I sat down, still watching the show. Thinking. Thinking. Listening closely to my body. Trying to swallow the tears and the fear. Cause right at that moment I knew this wasn´t a cough. This was bad. My demon showed me his face for the first time and for sure he wasn´t going to let go. So yeah... I knew. But like we all do, I closed my eyes to the evil in front of me, begging for it all to be a bad nightmare I would wake up from. But I didn´t.

Close the door, please? I´m not here.

So that brings us back to me lying in hospital. To be honest I don´t remember much of this time. Just that I was pushed from station to station, from room to room. I had caught an infection so I was feeling really bad, I had high fever and a bad cough and pain when breathing. I couldn´t eat and what I ate made me sick. My demon was taking over and I felt like fading away. The docs were talking about viruses, have you been to this and that country, we need more blood, you need to inhalate, did we already test this virus? It felt like I was meeting every doc and baby doc (I think they´re called interns in real life, but they are so tiny and cute! ;)) the different departments could bring up. Since they usually didn´t care to introduce themselves I started to give them names myself. Like Dr Barbie (blond, very chipper intern with high pony tail that was always happily whipping around. Ugh!), Dr Pout (self explanatory, isn´t it? ;)) or Dr Rhanjit (colour me prejudiced but he just looked like an Indian guy). I got weaker every day so they started to give me antibiotics just to stop me from slowly going away.

After a week or so they probably had tested every virus there is. Apparently I once had an Eppstein Barr infection (oh how we were all hopin that it would be that! The symptoms are very similar). But no, not this time. We were through with viruses. So there were new words tossed around. Cancer. Blood disease.The next round of testing began.

"Are you afraid??" Erm... yeah, of spiders, and you?

If I start telling all the stories I had to experience in hospital, I would still be sitting here tomorrow. So I stick to the medical stuff (booooooring!), sorry. :) They did an ultrasound of my lymphnodes ("OH MY GOD THEY ARE HUUUUGE!" Ja, wow, thanks Dr 1985), after that they took a biopsy of the ones in my groin. The doc who did that talked to me like I should go and make my testament. Which I still haven´t done... Hmm... Note to myself...Make testament. Leave everything to Grumpy Cat. Cause he rocks.

After the lymphnode biopsy they also wanted to do a bone marrow punctuation where they would take samples both of my bone marrow and bone blood. I barely can talk about it, it was the most horrible and painful experience I ever had to make. My bone marrow had already been so damaged that they had to start twice and because they weren´t able to draw enough blood they had to make a sternal punctuation on the next day. Läuft bei mir.
After the first punctuation I was so weak and I had so much pain that I couldn´t move at all. In the evening I also received my first blood transfusions (but by far not the last! Thanks to everyone out there donating blood. you´re saving lives! :)). It´s funny, while I´m writing this I can feel the metallic scratching on my bone again. It still hurts sometimes and according to my doc it always will.

On 2nd of March it was clear- it´s cancer. The Big C. A lymphoma. What kind we didn´t know yet. There are over 200 kinds of lymphomas, most of them treatable with positive outcome. Don´t give up hope just yet! Apparently there are "nice" kinds of cancer! "If I had to have cancer I would pick this one!" Like shopping for the perfect dress.

For determination of my exact kind they sent my samples to four different hospitals which are the best when it comes to lymphomas. My Mom also knew someone who knows someone who is like the Godfather of Lymphoma so we sent my results to him as well.

In the meantime I had been lying around in hospital for about two weeks. Tested, pushed around between the departments until I had my diagnosis. The demon had finally revealed itself, hardening it´s grip on me. So I changed rooms for the last time. To my final destination. One might say Endstation.

P.S.: The first show of Delain on the Cruise was also very special to me. It was the opening show, and I was watching it, silently crying tears of joy, cause I was so fucking happy that I could be there. Doing what I love, listening to the music that touches my heart and being among friends. It really felt like coming home and I went back to that memory so very often when things got really bad in the past months. That´s also why you should live your life to the fullest. Cause the good memories can help soften the edges of the hard rocky road that is life (oh my, I´m doing it again, I talk like a fortune cookie!!).

P.P.S.: I was actually thinking about writing a little on-the-side blog called "Tales from the Hospital" because I have so many funny anecdotes about the hospital and their staff.

"What are you waiting for, I´m ready?"

P.P.P.S.:

Awww, I just love to see him smile! :)

A long time ago, in a life far, far away... EPISODE I: The Phantom Menace

There was a time I didn´t know what lymphnodes are for. Or T-cells. I believe to remember that there was an episode of "Es war einmal das Leben" about blood where they were depicted. But that was it. (Who else is now humming along? "Spürst du es in diiiir, das schöne Leben, das Hoffnung bringt....?" :))
I was blissfully uneducated about all this stuff and getting ready to spent the time of my life on a cruise ship in the Caribbean, listening to metal. This was in January 2016, just around my 31 birthday. Here the story begins, a story I feel like telling now, just for completeness. Cause diagnosing PTCL is in itself a journey through hell.

So it was in the middle of winter and the high time for colds. Of course I also was down for a few days with a light fever, sneezing and coughing. But I was feeling good enough to go working so it wasn´t that bad (it never really is for us workaholics, is it? ;)). The cold went away, feeling bad though didn´t.

Night sweat? What night sweat?

I was often asked how I noticed that I had cancer or that I needed to go to hospital. Well the truth is...I didn´t. I was putting all symptoms I had away and telling myself they were leftovers from the cold. I had an explanation for everything. Short of breath? Well, I´m not exactly Sporty Spice so whatever. Sweating like a Snowman in summer? That´s surely from the damned radiators! This pain in the left shoulder? Ach, I just slept on the wrong side. Dry, persistent cough? That´s from the cold! So I used Voltaren and eucalyptus pills and nose spray and all the other home remedies I could think of. Jeez, I needed to get better again for the cruise! (In retrospective it´s kinda funny that I tried to beat cancer with eucalyptus pills and Voltaren. Take this PTCL! The almighty power of EUCALYPTUS! Have you ever seen a Koala with cancer? Noooooo, see! They all die of chlamydia.)

When the pain got worse and I sometimes barely could breathe I was kindly forced by my hubbie to see a doc. So we did an ECG and a lung-function test, both came out clean. My doc also said that it all was surely from the cold. So there was absolutely noooo reason why I shouldn´t be going on the Metal Cruise. :)

So I was off to Miami, feeling like shit but determined to desinfect my body with lots and lots of alcohol. Unfortunately it got worse. I was tired and exhausted a lot. I fell asleep during concerts (during both Insomnium shows! Insomnium my ass, I slept like a baby!) but I just said "Of course you fall asleep suddenly. You´re barely sleeping and mostly use liquids as nutrition!" Because I didn´t really want to eat. I had lost my appetite shortly before the cruise (and with it also about 20 pounds so I was all like "Yeaah!" ;)) and also there was this strange feeling on my left side, just beside the stomach...

I returned from Miami feeling even worse. I fell asleep at work (I thought it was jetlag!), I woke up completely wet from sweat, the cough got worse ("unproductive" it´s called. Hihi, like me.) and I wasn´t able to eat properly. I started googeling and thinking about possibilities. I was- again very gently- convinced that I should see an internist. He drew blood, did another ECG and sent me to do a X-ray from my lungs. He also noticed for the first time that I had fever- 39.5°C ("Did you know that?" Ermm... Noooo...). ECG and lung X-ray came back clean so I felt better inside. No lung cancer. Thank heaven. So it was back to work, feeling bad.

Some days later my Mom got me to finally call in sick at work and recover (don´t ask how long it took her to get me to stay at home!). I had just put the phone down when it was ringing again. The internist. "Your blood works are back. Could you please come in? Immediatly?" Gulp. That doesn´t sound too good. Phone back in my hand, calling my Mom.

I was sitting in front of this very nice man and he was talking about low hemoglobin and high LDH and CRP and I don´t know what else. From the moment I put the phone down at home the rest of this day is blurred. I remember him saying that he could just give me some antibiotics and send me home, waiting for things to get better. But he didn´t believe that it would work. So he handed me a red paper. Emergency referral to the next hospital. I stared at this thing in my hand, close to tears. What exactly was happening here? Where is my cold?? He said goodbye to me "Let´s hope it´s nothing serious." Oh, how he already knew what I was facing, I´m sure of it.

We packed a few things in a hurry ("Nahh, I´m sure two underpants are enough! I´m not gone long!") and went straight to hospital. My hubbie joined us in waiting in the ER. Anamnesis, another blood samples, urine test (good news of the day: IT`S NO CYSTITIS!!!!! Thank heavens! THAT would have been horrible!) and another X-ray of the lung (Guess what- still clean!). Hours and hours went by ("Take an example of your husband, he´s quite calm!" HE`S ASLEEP, GNAAARF!) and finally they found a bed for me. On geriatrics.

OH MY GOD what is this? I want to go home!

This is how it started. Oh, that innocent and ignorant me, lying in that hospital bed, trying to ignore the stenches, surrounded by sounds like from the Walking Dead (somewhere in the middle of the night someone started screaming from the top of his lungs "Help! Let me out! They´re killing me!" Ermm.... Gulp.), listening to Alestorm to cut it all out, imagening being on a ship again, somewhere on the Caribbean sea...

I was scared. But also calm. Cause to be honest... I knew all along.

Daily life 2.0

Yesterday I officially exchanged metal shirts and yoga pants for business suit and high heels. After the second best week this year that I spent in a luxury resort on Crete (nothing beats a metal festival on a cruise ship in the Caribbean though,spending it in isolation in hospital comes in a close third!  ;)) I have started working again. Daily life after cancer begins... NOW!

It felt like first day all over again. When the new girl greets you with "Welcome!" you know you´ve been gone too long. And so many things have changed- different soap on the toilets! And we have an assortment of tea in the meeting rooms! Say whaaaat? But really, being gone for almost nine months now (other people get children in that time, well I get cancer. Both starts with a "C" I get that it´s easy to confuse, dearest universe!) I feel like I don´t belong. It doesn´t help that I´m still fighting the aftermath of shingles and a serious opium addiction (I´m already reducing the doses so I´m on luke-warm turkey. I need a drink goddammit and I´m not allowed for alcohol as long as I´m on opium!) so I´m mostly trying to keep up a smile while crying in pain on the inside.

It hurts like hell. Every muscle on my body is on fire even my face and tongue!

And don´t get me started on chemo brain. Mine now is also stuffed with opiates so I already found myself panicky searching for familiar names of colleagues while still trying to keep up that smile. Or passwords. Jeez I didn´t even know I had so many passwords that of course are aaaaall gone now.

I now it´s only been two days, but I have the feeling everyone expects me to go back to just as before. Like I´ve only been gone two weeks cause I had the cold. And also have a new hair style.Voluntarily. Most of them probably really don´t have the slightest idea what I have been through and how I have been fighting just so I could be back to work yesterday. And either don´t care or don´t know how to ask. So let´s just say "Hi Anja, nice that you´re back!" and be done with it.

P.S.: My fingernails are falling off. Late aftermath from chemo. Meeeh, I´m so sick and tired of body parts falling off! Read somewhere that gel nails could help so I let the nice Korean guy from "American Nailz" (yes, with a Z!) do that. Looks good so far. Thumbs up (with fingernails attached ;))!

P.P.S.:

If you say so, Cookie Monster, then where are my cookies!?? Kylo Ren you greedy bastard!! 

P.P.P.S.: I found a red hair in one of my drawers at work. I opened it and it was just there. A sudden reminder of a healthy version of me from one year ago. And somewhere between that red hair and now something went horribly wrong. It´s these little things that get you. You promise yourself to be brave and strong and then there´s a hair. And all your walls are tumbling down.