The Break after Round One: A Retrospective (Blood Hurts)

Today I started my second round of CHOEP so I thought this would be a good opportunity to reminisce about the break after the first round. And since I´m a scientist I couldn´t resist but make a nifty diagram *nerd alert*!

About the interesting parts of my week I have already written in the past threads (well concering my sickness, the rest is private mind you ;)). However, you may have noticed the drop in the Feeling curve on the Easter holidays (when else?!). I labeled it "Bloodbuilding" and you also may think "Well, bloodbuilding sounds good and healthy!". No, no it´s not. Well maybe healthy but for suuure not good. At least for the patient. Lemme explain.

My blood values have been horrible especially the erythrocytes, hemoglobin, thrombocytes and LDH. For all the non-medical readers- these are all relevant values for the quantity of blood and for the blood building (the alert reader of my blog may remember that I´m anemic and needed blood infusions twice. Of course you all knew that ;)). I think the ONLY parameter that was okay were my leukocytes which are very important for the immune system. But we fixed that anomaly with chemo *pheeew* Since we like me having a good immune system I get one leukocyte shot with every chemo round (called Neulasta). At this point I would like to cite directly from the patient information leaflet of this wonderful medicine (comments in red):

"Like all medicines, this medicine can cause side effects, although not everybody gets them (as if!).

Very common side effects (may affect more than 1 in 10 people):

• bone pain. Your doctor will tell you what you can take to ease the bone pain. (check. Doctor: "Take these painkillers for light to medium pain you get without prescription in the pharmacy" Oh well, let´s guess how THAT worked out for me!?)
• nausea and headaches (check, check but who knows anymore from which meds I get these symptoms).

Common side effects (may affect up to 1 in 10 people):

• pain at the site of injection (check, and a wonderful addition for my collection of thrombocyte injection bruises!).
• general aches and pains in the joints and muscles (check. Huh, maybe that´s where my sore muscles came from?!).
• some changes may occur in your blood, but these will be detected by routine blood tests. Your white blood cell count may become high for a short period of time. Your platelet count may become low which might result in bruising  (check, my white blood cells have been skyrocketting today in the blood test. But I thought that was the purpose of this injecton?! You know, this being a leukocyte shot? No? Anyone wants to enlighten me? I know some medical doctors are reading this blog! Please step forth and explain! ;))."

So now you know, building blood hurts. A looot. Taking this and adding the usual chemo side effects (numb fingertips, trembling hands, no sleep) and losing your hair you can imagine why there´s a drop in the curve.

But still, overall the first complete round one has been alright for me. So let´s wait and see what round two has in store for us!

Mountain Med is getting bigger every week!

There are many more fun side effects to discover! More sleepless nights (Bets are still open after how many days of no sleep I turn into Godzilla)! How often can my phone survive being dropped out of my numb and trembling hands (do you know how f***ing hard it is to navigate a TOUCH screen with no feeling in the fingertips and shaking hands?? Every message I write is hard work dammit, I hope you appreciate that! ;))? When will Mountain Med have grown high enough to actually be acknowledged a mountain (soon, I promise!)?

So stay tuned if you just cannot wait for an answer to all of these exciting questions! I promise you won´t be disappointed! :)

Is this USB compatible?

My veins are at least as mean and wicked as I am. They just like the smell of cold sweat and the sounds of desperation that nurses and doctors make when they have to draw blood from me. Because everytime someone approaches me with a syringe my veins decide to just go over there, you know, just around that corner, where no one can find them. I mean sure, I also found it quite funny when Dr. Ranjit was almost close to tears when he had to get blood samples from me in the middle of the night but the incompetent tries were also always connected with pain and bruises for me. And THAT I didn´t like.

And you know what is a very bad combination? Bad veins and chemo. Because there is this thing called extravasation (if you want to google it please do yourself the favor and don´t click on the "Picture" button! o0). This means that the injection that was supposed to go into your bloodstream is going into the surrounding tissue. And do you know what is very bad to have in your tissue? Toxic chemo meds!

So to end this misery with my bad veins for all of us I had a so-called port installed. This is a little device that is sitting right beneath my skin under my right collar bone:

That is how the port is installed under the skin and how it is used.

A catheter connects the port to a vein which makes it easily possible to inject any kind of drugs almost directly into the heart or to also draw blood. In "sleeping mode", that means in between treatments, you almost don´t see anything from outside. You can feel the port as a small hump on my chest but that´s it (yeah, you can touch it if you´re that curious, just ask! ;)). But when the treatment starts and I get my everyday blood samples and infusions a needle is inserted into the port which can stay in for a week. Then you can see a little tube from the outside where the infusions will be connected with.

The port was installed in a small surgery (lucky me under full anesthesia :)) and I´m very glad that I have it because it makes everything way easier and safer. On Wednesday I will start my next round of CHOEP in the oncology doctor´s office here in the city. So then, when the doctor puts in my needle, it´s again time to call out

O´ZAPFT IS! :)

 (and yes I did that the first time in the hospital and my doc was very irritated by it, dunno why...)

"You don´t look that sick?!"

Update on side effects I´ve been having from chemo:

The usual like sickness, tiredness, pain and hairloss (not yet though!). More interesting like changes in taste, sleeplessness (it´s 5 am as I´m writing this and I am NOT awake early), lack of appetite, stomache cramps and bitchiness. No wait, the last one´s just me being me when I´ve only had two hours sleep every night for four days straight. ;) But now, NEW and UNEXPECTED! Sore muscles on my whole body (there are actually muscles I didn´t know about because you just don´t use them enough to become sore o0) and Neuropathy (it means my fingertips are turning numb so now I´m even more clumsy than before)! Isn´t it nice how there´s always still something new to discover? :)

Apparently I´m not looking like someone who´s having cancer. Many people and even doctors are irritated that I don´t look like a cast from The Walking Dead. After two litres of blood transfusion I even have the tan from my vacation back (yes!).

Rick Grimes and me- good times!

And to confuse them all even more I went to my hair stylist Jenny and got meself a new hairdo. Soon my hair will fall off anyway and I prefer to let it go with a bang! No matter that we had to leave the blonde dye in for over an hour and still couldn´t get rid of that mouldy green touch I got from my last hair colour (who knew that purple would become persistent green in combination with Caribbean salt water?). We had a mission and followed it by any means necessary!

Byebye Mouldy Dark Chocolate, helloooo Unicorn Ombre!

The tranformation took almost four hours and I enjoyed every single minute of it. Jenny and me were mighty proud and when I told her that the next appointment I will be making with her would be to shave my head she somehow had the strong urge to hug me.

So next time you see me and think "She doesn´t look that sick?"- I may not, and the hell I never want to. Because having cancer doesn´t mean you have to look like you have cancer. This new hairdo is not only totally awesome but also a big "F*** you" to chemo side effects and my way of saying YO-wait for it-LO! :)

P.S.: The other option to deal with impending hair loss would have been to reenact every third episode of Germany´s next Topmodel ever made (this is the episode where the girls get their do-over, duhh). I will keep that in store for the moment my eyelashes fall out.

The barfing Dutchman

Dealing with cancer not only is getting chemo and taking thousands of pills like antibiotics, aciclovir and pH regulators to protect the healthy parts of your body from getting chemo (Fun Fact: Did you know that I could get cancer from chemo in the next 10 to 20 years? Yes, that´s actually a possible side effect of chemo. Cancer. Is it just me, or is this seriously missing the mark?). Let me tell you about the daily routines.

As scientist I know how science and especially chemistry can be wonderful and intelligent and just breathtakingly awesome. Chemo meds however... Yeah, they´re not. They´re... "Gifted" :) They are rampaging through my body killing everything on sight- the good cells, the bad and the ugly, leaving behind dead tumour cells (yay!) and a fucked up immune system (booo!!). Don´t get me wrong, I don´t want to be ungrateful but a little more sensitivity would be very much appreciated. ;)

So to avoid any additional infections I have to take care to stay away from known disease herds. Like salads. Raw fish (that´s really mean). And children. ;) And that´s exactly the things my doctor told me. Seriously. He also told me not to go to any festivals. I have no idea why he thought that would be important to tell me?! XD




However there are not only viral infections lurking around. There is also a whole spectrum of fungal infections that could befall my digestive tract. To avoid that I have to keep to a daily mouth hygiene routine four times a day including brushing teeth and using specific mouth wash (in hospital I had a different mouth wash that made my tongue go numb and swollen and I couldn´t taste anything. After complaining about that to the doctor he replied " Well this is no gourmet restaurant!" Awww, empathy your name is Dr Klein).

But all of this is nothing compared to my arch nemesis for the past two weeks:

Der pürierte Holländer!!
(you know, orange like oranje? Well in my head it totally makes sense)

This my friends is the reason for many, many, many Gollum-like debates with myself ("Noo, me needs to barf from it!""But me wants it. Me needs it! Doctors says is good for us!").
This antimycotic dispersion paint keeps me awake at night and my tongue in a constant interesting pink-orange colour scheme (my tongue usually is almost white at the moment due to my anemia). I think it´s so nice that some pharma dude really made the effort and at least gave it that nice colour, just fitting the wonderful taste. With Vodka it could become the next best trend drink.

 

The most fun thing of this hygienic routine (besides making me want to throw up four additional times a day)? Gummibears tasting salty, Ginger Ale (no Jameson though *sniff*) tasting bitter and the constant surprise of not knowing if things you loved still taste the same. Thank god I still have a healthy appetite and eat enough. ;) 

So my friends, raise your glasses four times a day for me. To health, to life and beware of the barfing Dutchman!

Prost!

First round of chemo or "I have to pee!"

Today I´ve finished my first round of chemo. No additional body parts have grown, no obvious superpowers so far. Disappointing. But let´s start at the beginning, shall we?

For all of you who don´t know jack about chemo, here´s a short tutorial of my first stage :)

The almighty Lymphoma Board

Generally speaking, my cancer is a quite rare form of Lymphoma. Y´all know I´m way too special to take your everyday Lymphoma. That´s why only treatments are available which are still called "studies". Assuring, isn´t it? :) Anyhoo, the almighty Lymphoma Board (and yes, when I think of them I see a picture of the Jedi Council) decided to treat me following study "DSHNHL 2006-1A (AATT)". Say WHAT?

This means I will get four rounds of CHOEP. That´s just the intial letters of my chemo meds in a fun sounding way. The first round I got the past days in hospital and finished today by just taking Cortison. These cycles I will repeat three times in the next approximately 40 days. Luckily not in hospital but at a doctor´s in the city. Yay!

One of the meds is a beautiful devilish red and has fluorescent properties. Hell yeah, I will take a UV lamp to my next treatment and make that bitch glow! XD Science, bitches!

The side effects of chemo have been alright so far. Thanks to strong antiemetics I didn´t have to throw up though feeling veeeery much like it. Been tired a lot. Including sudden coma like states o0 But you know me, I just love to sleep so keep the excuses coming :)
Had also strong headaches, but nothing that couldn´t be made better by taking moar pills. After that I had a... well.. drunken episode. That was actually funny. I hope this one becomes a regular thing! ;)

Since dead tumor cells are passed through the kidneys I have to drink a lot. In hospital they additionally gave me NaCl solution infusions. They called it "Bewässern". Like a plant. So, my new favorite hobby is peeing. All day long. And always waving the little bastards goodbye before flushing! ;)

Guess I have a Blog now...

It´s been over two weeks now since I´ve been diagnosed with Peripheral T-Cell Lymphoma (PTCL, and yes, that´s fancy for cancer ;)). On Friday I was finally allowed to go home after spending almost 4 weeks in hospital. I won´t talk no more about the wonderful time I had in hospital especially not on Nazi station, I think I have been telling you enough about the great food, the "slightly unpleasant" treatments and all the nice doctors I´ve met ("Are you scared??" "What´s your diagnosis? Oh Shit! That really sucks!" Immaculate bedside manners! o0).

Now a new episode begins. Living with cancer in daily life. That starts with sorting pills everyday and ends with chemo sideffects like sickness, pain and hairloss and all the fun things in between. Since apparently there are a few people out there that care about me and want to know how I´m doing and what the current status of my treatment is, I decided to write this blog.

This won´t be about me and my feelings (even though I have very deep thoughts now, I call it "cancer wisdom" and writing fortune cookie texts is definitely a second job option!) and I won´t be writing long texts crying YOLO and CARPE FUCKING DIEM! This is for all of you who are interested in the relevant stages of my treatment, medical wise and what it´s been doing to me.

I have a long and hellish road ahead of me. So if you want to join this hellride, take a seat and hold very tight. And never forget... YOLO BITCHES!! XD