I´m going to isolation and I´m taking with me...

• my laptop to watch Netflix and DVDs and write this awesome blog
• an internet stick so I can actually watch Netflix and write this awesome blog ;)
• complete DVD seasons Lost (thanks Heli!). I´m always open for any other suggestions which series to watch!
• my Boombox cause I have a single bed room and I wanna rock isolation station. \m/ Since my iPod is not working anymore (somehow it didn´t like taking a bath quite as much as I do) I´m using Spotify right now. I have a chemo playlist but since I´ve already had a lot of chemo I´m kinda fed up with it. So if you have any suggestions for good music lemme know. Doesn´t necessarily have to be metal. ;)
• Metal Hammer magazine (this month there is a poster of Sabaton in it. Oh yeah, I will put it up. Cause the last time the nurses encouraged me to hang some pictures or posters. Well, no "Hang in there" kitties for this cancer patient, nope! :))

Aww, maybe yes. Look at that cuddlywuddlycutesiekitty!

• Nintendo 3DS with Pokemon and Harvest Moon (thanks Markus!). Gonna catch em all!
• Drawing book for adults and pencils (thanks Sandra!)

This drawing book is absolutely awesome. Even though I get mosly irritated looks from the nurses "Aw, how beautiful, what are you drawing? What does it say? "Fickschnitzel"????" ;)

• some books, though I´m pretty sure I won´t be reading too much. It´s kinda exhausting when tired and stupid.
• some card games and Kniffel. The simpler the better ;) 

Since I have cancer I totally rock Kniffel. Or they just let me win cause I´m so pathetic. I don´t care cause winning is awesome! ;)

• my Chewbacca pillow (thanks Susi!) and my Chemo bunny (it´s holding my IV lines while I´m sleeping :))
• a clock. Cause that´s on the list of suggested items to keep you occupied. Oh my, how much fun I can have with that! Erm... yeah...
• most importantly: My cell phone! I´m not sure how many visitors I´m allowed to see so pleeeease write me! Every day! I might not answer on the first few days cause chemo´s taking me down but I´m always glad to read messages and see that you care. :) Being in isolation is one thing, feeling alone in isolation is a quite different one. 

I guess that´s lot of entertainment options. But I really hope I´m allowed to see as many of you as possible. Cause that´s the best distraction from being in hospital. Being surrounded by friends and family. :)

So today I´ve had my last exams so I´m all ready to go. I´m waiting every day now to get a call from hospital telling me that they have a free bed. So I guess the next blog I´ll write from hospital.

BEAM me up, Scotty! Wait, or was it down?

I´ve spent my valuable freetime not only with fun things but also with visiting several doctors. The dentist, cardiologist, gynecologist and ENT doctor all checked me from top to bottom (I almost died on the ergometer!). So now there are four letters lying around on my desk saying that my body´s fit and able enough to take on a stem cell transplantation (it´s so funny how doctors love their letters. I sometimes feel like a postman carrying paper from doc to doc. That´s sooo like last century, ever heard of something called "e-mail"?). I guess now it´s time to talk and think about the next (and hopefully LAST) step in my treatment plan.

Oh well. Have a lollipop.

Here´a quick recap of what we already did:

• Four times CHOEP to get rid of most of the cancer- check!
• Restaging to "something like remission"- hehe check.
• DHAP and Neulasta to stimulate stem cell production- blehh yes, check, thank heavens.
• Stem cell harvest- "like a queen" according to my doc. So, royally check!
• Getting physical check-up- check.

So the last flight of stairs will take me to BEAM, an even higher dosed chemo than DHAP. It will destroy my stem cells completely, leaving me behind without an immune system, blood coagulation or oxygen transport in the blood. This state is bearable for the body for approximately five days before it dies. Because we don´t want me to die (duhhh!), I get my own harvested stem cells transplanted back after two days. It´s like a reboot of my system- first we format my hard drive only to then install a new OS which shouldn´t have the same problems and bugs as the old one. 

Without an immune system I´m very prone to any kind of infection which means I have to spend the time of the treatment in full isolation on Nazi station. If I´m lucky and don´t catch anything I can probably leave the hospital after 3-4 weeks. But the duration of my stay can easily double if anything goes wrong (and there´s a lot of stuff that could go wrong...).

I don´t know yet any more details what to expect from BEAM only that I will be very, very tired. And since two of the four meds have already been part of my first two chemos (E- "Etoposide" from CHOEP and A- "Ara-C" resp. Cytarabine from DHAP) I kinda know what I can expect from them. Which doesn´t make it any better cause they both seriously suuuuucked. ;)

That almost makes you miss CHOEP doesn´t it? ;)

I have several appointments at the clinic the next days where they do the final checks before we can start chemo (another CT, ultrasound, lung function test, one thousand blood tests at least ;)). And I will also have talks with my docs and the nurses where they explain to me in great detail what it means to be in isolation so I can prepare better. Cause there are even more and stricter rules in isolation than on normal Nazi station. And I heard the chief nurse is even more evil.

Wahhhh! Chief nurse Adi

P.S.: I just read this about the side effects of Etoposide on Wikipedia and I really wanted to share it with you cause it made me laugh so hard- "Less common side effects: Acute myeloid leukemia (which ironically can be treated with etoposide itself)". That looks like a vicious circle if I ever saw one! ;)

My eyelashes: An obituary

I have been thinking very long about how to appropriately say goodbye to my wonderful eyelashes. I had several ideas to express my deep feelings but then I noticed I´m neither a poet nor would interpretative dance transport to this blog. And curiously enough has Taylor Swift never written a ballad about that topic. So I just want to say a few words about my loved lashes that I now have almost completely lost (some are still defiantly sticking to my eyes, but oh my, I can count them using only one hand...).

In Germany we believe that when you lose an eyelash you should pick it up, make a wish and blow it gently away. The wish is then bound to come true. If only that were true I would still have my lashes cause that would´ve been my first wish (and the next few hundreds, too. Okay, one would´ve probably been to not have cancer anymore. Talking bout perspective here! ;)). But it´s just a superstition and so they are gone. And if you knew them you also know why I´m taking it that hard. They were beautiful lashes and I got a lot of compliments for them. And don´t tell me "They will grow back", I know they will but I already have lost so much during the course of this illness and I really really reeeeeeaaaally hoped that they would be spared. But I guess being spared is not part of having cancer. So farewell my beloved lashes, at least your passing away is for a good cause.

I just need a few moments to mourn. And adapt to the thought that I now look like a naked mole rat.

I have less hair but better teeth

Stem cell harvest or "I have a garden hose in my neck!"

There´s an easy way to do things, there´s a hard way and then there´s the Anja way. Which is basically the hard way but with more glitter. :) 
I could´ve just gone to the DRK (German Red Cross), get two venous accesses into my arms for stem cell harvest and go home afterwards. All in one day, easy peasy. Instead my horrible veins decided that we missed hospital too much for that. And anyway, where´s the drama when using the arms? Boring! So it was back to hospital on Monday cause I needed a so-called Shaldon catheter for stem cell harvest.
But first we had to check my blood values- are there enough stem cells in my blood and are the values for Hb and thrombozytes good enough? Well good news- I was basically bursting with stem cells. I mean I have been given G-CSF shots worth a small car so that was to be expected (but still- yay! :)).

If we just sold the G-CSF shots on ebay we could´ve bought that car. Believe me we were tempted ;)

The other two values however... They sucked. My thrombos were down to 4k (just as a reminder- a healthy person has ~400k). I actually started to have little hemorrhages on my skin. So I really needed a transfusion (or two...) before they could place the catheter.
The Shaldon catheter is one veeeery long tube that´s being pushed through your jugular vein right to the heart atrium. The procedure is done under local anesthesia only. Which is quite unpleasant to say the least. The result looks like this:

Creepy, right?

The washing mashine

The next day at 8 am I was off to the DRK with my garden hose and my huge amount of stem cells. After a kinda forced breakfast I was connected with the "washing mashine" (that´s what the doc called the harvesting machine). I mentioned it somewhere earlier but for harvest my blood was pumped out of my body and through the washing mashine. In this machine is a centrifuge that separates the stem cells/leukocytes from the other blood parts. To prevent the blood from clogging in the mashine it´s mixed with sodium citrate which exchanges the calcium. Since the calcium poor blood was pumped back into my body I started to get a tingling in my lips and my face. So I had to suck calcium effervescent tablets. Well, I could´ve also drink them but I already needed to pee, like reeeeeally, so I tried to avoid any unnecessary liquid uptake. ;) I was very lucky cause after just two hours we already had harvested enough stem cells.

Back in hospital I got another thrombocytes transfusion so they could finally remove the catheter (it´s really difficult to sleep and move and basically do ANYTHING with this thing in your neck). Since apparently you have to be monitored for 24 hours after harvest I had to stay until the next day (which was so nice since I was in a four bed room with cranky old women). After receiving another erythrocytes concentrate because of my Hb value (was around 7) I was allowed to leave the following day.

Now somewhere in the freezers at my clinic are my stem cells waiting to be transplanted back into my body. They won´t need to wait long cause in about two weeks I will be back to get them. But until then I´m free and will savour every single day.

Hell week

Hell week usually describes a particularly hard week of training for Navy SEALs. Not that I have been doing anything more exhausting in the week after DHAP than moving from bed to sofa to toilet and back (often enough even barely able to master these distances) and instead of sleeping only four hours during the whole week I usually slept around 17 hours per day but still I feel like most of the top ten hell week phrases apply to my week after DHAP:

• Pain is good; extreme pain is extreme good
• You people are pissing me off
• Pain is weakness leaving your body (haha, really love that one!)
• Stop what you´re doing
• Say goodbye to the sun, gents
• (and five more very manly and not so fitting phrases ;))

Like I mentioned in my past posting the high-dose Cytarabine really knocked me out leaving me in a coma-like state until Wednesday. It is also a cytostatic used for brain tumor treatment and therefore able to pass the blood-brain barrier, f***ing with your brain and giving you depressive episodes. That means when I was not sleeping, I was either crying or really really really pissed off yelling at my Mom and my hubbie for just being there and obviously doing everything wrong. (How could they even THINK about opening the window shades to let the sunshine in? I mean, seriously they should know better. Right? ...Right?)

The three aggregate states of Anja during Hell week- sleeping, crying, angry (the sleeping baby has more hair than me, dammit!)

It´s really horrible when you´ve got no control over your thoughts and emotions and you´re helplessly tossed about by the biochemistry gone wrong in your brain. It´s like watching yourself from outside wondering "Who is that person and why the fuck is she so angry? And now sad. And now angry again. Whatthefff?". It doesn´t help that my doc confirmed that a lot of patients are having an emotional low after DHAP or to know that it´s just the side effects of chemo why you´re suddenly that (let´s be nice and call it) "person". Thank heavens for the apparently infinite patience of my Mom and husband otherwise they would have been running from me. I know I would have. As fast and far as I could.

This one goes out to my Mom and hubbie for being the angels they are

Trying to wear off DHAP without any casualties surely was hard. But hard enough to call it hell week? Mehhh, maybe not. But then there was also Neulasta. Never underestimate the side effects the Granulocyte-Colony Stimulating Factor (G-CSF) shots twice a day can have on your body. I know we´ve been there before but that was about one shot in like two weeks. Now we´re talking ´bout two shots daily for nine days in a row. Aww yeah, that´s a whole lotta bone pain and muscle aches and aching joints. Also my belly hurt after being used like a pincushion day after day.
Oh and the best thing? I couldn´t take any painkillers because my thrombocytes were around 20k only because not only DHAP but also Neulasta are destroying thrombos (having the side effect that I got to experience the so-called spontaneous bleeding after brushing my teeth for example). So I tried to breathe through the pain. Cause I read somewhere that that worked. Well, it doesn´t.

Breaaaathe in, I have no pain, breathe oooooout, pain is just conceptional, breaaathe in, ohmygod that hurts, breathe ooout, fuck where are my pills?

Hell week after DHAP- sleeping, Netflix, depression, pain, absolute weakness, bleeding gums and needles in the belly. Or in a nutshell:

Vacation in Naziland

I told you I would report back on the weekend. Never said which weekend though. :) I´ve been more Zombie than Unicorn in the past two weeks but don´t call the butcher just yet! I´m back among the living (well, almost) and want to catch up with my blog before it´s back to hospital tomorrow (more on that later). It´s quite a lot to catch up on, so I´ll start where I left you- going to hospital.






New neighbors on Nazi station
It was back to Nazi station which kinda felt like coming home. Well, if your home was filled with unmotivated Nazi nurses, painted in urine yellow and you had to share it with a very grumpy stranger. I´m no ray of sunshine either but oh my did that woman have a temper! I´ve heard curses that make me blush just thinking about them! And she let her TV blare 24/7 which was also very annoying. Oh and she was also the reason why we had to be in half-isolation (she had a resistent germ), meaning we weren´t allowed to leave our room and all people coming in had to put on the complete safety equipment. Somehow, everyone was taking heed to these ridiculous rules but her, she was still walking out like she wanted to for smoking. Such. A. Nice. Person.

Getting started
Bureaucracy went surprisingly smooth. Same questions as usual, blood here, urine there, and while you´re at it put some cotton swabs everywhere. Then we let the young, inexperienced nurse put the needle in my port. Cause she needs to practice. And I haven´t suffered enough apparently. She put it in tilted so it hurt and we had to re-do it the next day before the chemo started. But I´m glad I could help a Nazi nurse in training. Meh.




Hospital food
The food was exactly the same as the last time. And I mean exactly the same. That´s how you know for sure you´re seriously sick and spent too much time in hospital- you have ordered the one and same meal for the third time... And then the horror! They cancelled pudding for breakfast!

Isn´t it bad enough to have cancer, do they have to take away the one good thing in hospital?? Chocolate pudding for breakfast! You devils! Shame on you!

Let it drip!
I have no idea how many litres of liquid really went through my port in the time I was there but I was hooked up to always at least one bag of infusion from Tuesday afternoon to Friday night nostop. There were of course the chemo meds- 250 ml of highly concentrated Cortison every day, 500 ml of Cisplatin over the course of in total 30 hours (watching it drop was better than every meditation technique it was sooo sloooow) and two times 1000 ml Cytarabine for three hours. Because Cisplatin is highly toxic for the kidneys and I really like to keep my kidneys it was also scheduled in parallel to give me 4 litres of sodium chloride solution every day to rinse them (four days of hospital- do the math ;)). And now and then 500 ml sodium bicarbonate solution to help them pass the toxic chemicals better. And don´t forget the two bags of blood because my Hb dropped below seven again. All this liquid caused water retention so I additionally receceived some infusions against that. Fight water with water or something like that.

Side effects
Cisplatin is said to be causing severe nausea and vomiting- this med is probably the main reason why we all associate chemo with throwing up. I was warned of this side effect but interestingly I didn´t feel sick for one minute in hospital (besides hospital food induced nausea of course)- thank you antiemetics! My kidney values were monitored closely during therapy and all that rinsing did its job. However, due to the water retention I totally felt like a water-filled balloon close to exploding. Heavy legs, swollen fingers and still you have to pee every five minutes. But all in all, Cisplatin was just boring and a lot of peeing.

I also had the typical puffiness you get from taking Cortison.

The Cortison was so highly dosed that it sent my blood sugar values through the roof (yes, it was the Cortison and NOT the Chocolate Marshmallow S´mores Frappuccino from Starbucks my Mom smuggled in for me! ;)). So those values were also monitored every few hours and oh my, I can seriously never be a diabetic! Stinging your fingertip huuuuurts! If the values were too high I got an Insulin shot.

And then came the Cytarabine- and I was gone. Like totally. It was running for thirty minutes and I fell asleep and kept on sleeping for the next like 5 days. Since this med is excreted not only through skin but also through the eyes the nurses had to wake me up every two hours to give me eyedrops so my eyes wouldn´t take permanent damage leaving me blind in the worst case. Originally, I wanted to write my "Blog on a Block" (cause that´s so retro!) during my hospital stay and just post it when I come home. Yeah well, did you know that the "H" in DHAP stands for "high-dosed"? So after Cytarabine I was knocked out and didn´t write jack. :)

Going home

I was counting the minutes together with Willie my SpaceStation until the last infusion was finally done on Saturday. My blood values were all ok enough and with the promise to drink the amount of the rest of my scheduled infusions I was allowed to go. It was such a good feeling to get the needle finally out of my port, it felt like it was going to break soon!

I packed my stuff, grabbed my discharging papers, waved my sunshine neighbor goodbye and with flying unicorn balloon I was out of there (instead of flowers which are not allowed on Nazi station. So great. Tysiąc pocałunków, Ilona!). But I was told that I took the chemo surprisingly good. Usually the blood values or the general state of the patient get so bad that the chemo has to be paused or even cut short. So yay me!?