Getting DHAP or "I came for the great food but stayed for the marvellous service"

Just got off the phone with the hospital- yay they found a bed for me! I´m so excited!

Will I be on Nazi station? Or back to geriatrics (which was fun, fun, fun!)? Or even just on some corridor? :) I don´t know yet but either way I´m glad we can start with DHAP tomorrow. Cause today I will be just "rinsed". Which sounds like a looooot of peeing to me. ;) But the next two days I will be hooked up to some machine (Willie, how I missed you!) almost 48 hours straight. And a fun bonus- one of my chemo meds is cis-Platin! *wink wink to all my fellow chemistry friends from Heidelberg* :)

Looking forward to great hospital food, obsessive interest in my body fluids and almost no sleep. And unknown side effect of the new chemo! :) I know the anticipation will probably eat you up but I´ll report back on the weekend. ;)

It´s a beautiful day to save lives

This post isn´t about telling you about my treatment steps. I want to use my huuuge and widespread audience (haha) to make an important plea.

The next step for me is the autologous stem cell transplantation. That means I can be my own stem cell donor since my blood building system has not been affected by the cancer (lucky me!). For this purpose I will be harvesting my stem cells in the next weeks (that´s what DHAP is for) and they will be transplanted back after BEAM. If everything goes as planned I´m cancer free after that. And hopefully stay that way for five more years.

However, in case of a recurrence (which has kinda high chances with my kind of cancer) I would need a so-called allogeneic stem cell transplantation which means stem cells from a donor that is not me. And that is where you come into play! :) Unfortunately it is not easy finding a matching donor since the match has to be 100%. Good chances lie within the family because of the genetics but still only one third of all patients find a donor within their families. So the more people are registered in the databases for stem cell donors worldwide the higher the chance to find your "genetic twin" that has the matching stem cells to save your life.

Just say "Ahhh" li´l Biebs!

Registering is really easy, in Germany you can order your registering kit online (here: https://www.dkms.de/de/spender-werden), they send you cotton swabs which you put in your mouth (yeah, just like in CSI ;)) and simply send back. It doesn´t cost you anything but maybe ten minutes of your time. And just think that you could save someone´s life with that. I honestly don´t know how it works in other countries, so if you have tips for that you could maybe leave them in the comments. The database is worldwide connected and will be searched by the hospital, so it doesn´t matter where you´re from.

Pheeww, she´s back.

If I need an allogeneic stem cell transplantation I don´t have too much time to waste to be waiting for a matching donor, so my doctor suggested that my family should register now already. And I thought why just my family, I can also ask my friends. And THEN I thought why stop there in times of social networks and all that s....tuff. That´s why I´m writing about it here. And I also have reactivated my FB account for that (did you hear the huge sigh of relief from Mark Zuckerberg? Here´s the link https://www.facebook.com/sparkilicious). So share it, tell your friends and your family and your colleagues and all your followers on Twitter or whatever.

Cause saving a life (my life?) simply by sucking on a cotton swab? That´s a no-brainer.

P.S.: Okay, for the actual live saving you would need to do more than sucking a swab. If there´s a patient matching your profile you would of course need to actually donate stem cells. But don´t worry, I will tell you all about that in approximately two weeks when I´m done with donating my stem cells. :)

Honey, I shrunk the cancer

Today I had the appointment in hospital to get my MRT results. To quote my doc (who is seriously a ray of sunshine and always full of optimism. Not. He´s also having all of our talks on palliative station like I should start feeling comfortable there. Weeeird.):

"Everything´s looking just like we expected."

Wow, that is great! ... Erm, what exactly did we expect? Apparently still no superpowers (boo!) but just that my spleen and my lymph nodes are smaller (yay, but like I didn´t know that already, duuuuhh). So the chemo I got until now did exactly what it was supposed to do- good job CHOEP, attaboy! However, it´s not exactly partial remission nor complete remission it´s just... something like remission.

So that was "restaging". Alrighty, that was pleasantly unspectacular! Let´s just move on to DHAP, starting next Tuesday. If I get a bed in hospital, that is. Which I will only know Tuesday morning. Aww yeah, that´s how we roll here at the clinic. Take it easy, just go with the flow. It´s a 24 hour chemo which we all know I will need since mid-March- but jeez who needs to plan such things?? That´s like WORK! Chillax, there´s always room on the corridors! ;)

Just add Willie my SpaceStation to that picture and I guess we´re preeetty close to my hospital stay next week!

Keep Calm and Restage

 

I´m not supersticious. I´m a scientist. C´mon, I know better than to be nervous about Friday 13th. But I would still have preferred another date for my restaging MRT. Cause tomorrow at 8 am (bah that´s way too early for anything, especially a MRT!) I will be pushed into that narrow, stuffy tube for long loooong 45 minutes listening to the noise and rattling of the magnets moving around me and the occasional breathing commands coming from the medical technician over headphones. I don´t have claustrophobia, but it´s easy to feel a slight panic lying there, no room to move, no way to escape and then be told to hold your breath for 30 seconds or longer.

The MRT at my clinic.

We will take pictures of my chest and stomache to see how CHOEP has changed the status of my cancer. For my type there are no tumor markers in the blood or anything where you can see the stage, the only way to capture that is with imaging techniques. The reasons we´re doing a MRT and not a CT is that it´s radiation-free (wouldn´t want to get cancer from radiation now, would we? ;)) and with MRT it´s also possible to determine the cell density which makes it easier to distinguish between cancer cells and healthy cells. I guess for older patients they wouldn´t usually go all this way but my doc seemed quite determined to get the best imaging available (he would even make a PET-CT if necessary). Sometimes it´s good to be young and therefore recipient of that extra mile. ;)


I guess someday next week we will have the results. There are three ways it can go- complete remission (CR, cancer´s basically gone), partial remission (PR, cancer´s still there but detectable lesser) or no change (NC, well, that´s self-explanatory ;)). Funny thing is, it doesn´t matter which way it goes cause the treatment plan won´t change either way. I will receive the full-on, in your face, we won´t leave a trace of anything cancerous behind treatment no matter what CHOEP did. The answer to high recurrence rate is BEAM in any way but for sure I would feel waaaay more comfortable knowing that the past weeks with CHOEP weren´t totally in vain.

So to be honest, I´m nervous like hell about restaging and that it´s Friday 13th doesn´t help with that. At all. But as long as Jason´s not waiting for me when I get out of the tube, I think I´ll be fine. :)

And doctors and nurses, too, Jason. They really do.

P.S.: The last time I was in the MRT tube it was actually kinda awesome. In university I had a course called bioanorganic chemistry and so I know a few things about how a MRT works (it´s basically a proton NMR of the water molecules in your body *nerd mode off* ;)). So I couldn´t stop grinning like a mad girl because I got to experience this awesome science directly with my own body. I mean, that technique is genius! I did a lot of H-NMR in my days but to have the idea to use it for medical purposes? Awesome. Yay science and smart people who know how to make the world better with it! :)

The last round of chemo or "Are we there yet?"

 

That´s it. We´re done.

We had our good times, but to be honest most of them were really shitty. And I appreciate that you
did your best so I wouldn´t miss you at all. The last days you gave me extra nausea and coma states. Even though we completely left out Vincristin I have numb fingers. Just thinking about Cyclophosphamid makes me wanna throw up. Ohh, and those horrible flesh-colored Etoposid pills I almost choked on (I only could take them with truly epic music as support so I put on the "Ride of the Valkyries")!
So farewell, CHOEP, rest in hell where you belong, together with my demon.

But still...

You were predictable. I knew how I would feel and usually also when. I kinda liked the oncology office and being at home afterwards. You were simple, just a few infusions that dribble, dribble, dribble into my body. And you just tried to kill my demon and not me. That´s kinda cute. (Even though you didn´t always aim that good now, did you? ;) Or how my doctor would say "Schaade...!")

And now...?

MRT someday in May to see if you actually did anything useful in my body (called restaging). For sure you did, or I wouldn´t have felt so bad, right? Just gimme a big, fat "complete remission" and we can stay friends (okay, I can also live with a "partial remission" don´t want to be too demanding).

So are we there yet?

Nope. Life after CHOEP: Getting check-ups at various doctors to make sure my body is ready for the next steps (dentist, otolaryngologist, gynecologist, cardiologist). In two weeks time at least two days in hospital for DHAP, my new 24 hour high dose chemo. That´s actually not targeting the cancer but is supposed to stimulate my stem cell production so they will accumulate in my blood. And we can harvest them and freeze them for the last level of stairs waiting for me. Will be getting Neulasta also over a longer period of days for this purpose. But don´t worry, they are higher concentrated so the pain will surely be *mumble mumble*. Erm, wait, come again?
Fingers crossed until they break and hope that my veines are good enough for the stem cell harvest after DHAP and that we can do the harvest ambulatory (alternative: central venous catheter and in hospital, bleh!).
For harvesting the stem cells my blood will be pumped out of my body, the stem cells will be extracted through a centrifuge and then my blood will be pumped into my body again. And we will do this until my whole blood volume has been exchanged four to five times. That´s a whole lotta hours watching your blood circulate outside your body! If I´m lucky I´ll only need one harvest (I totally rocked "Harvest Moon" so I´m absolutely positive that one will be enough!).

And then...? Surely we´ll be there then!?

Nope. Cause then we bring out the big guns.

BEAM!

The Menopause Blues

Yeah, fuck that shit.

It´s not the same as losing your hair. Your hair will grow back. It will take time but sure, it will grow back. And you really don´t need it anyway. But what about your reproductive organs? Well, not that they fell off *ewww*! But two days ago I started to get the first menopausal symptoms. For all of you under 50 (and female obviously ;)) who had the same thoughts about menopause as I had until now- "I have at leeeeeast 20 more years to go!"- here´s what is expecting you 20 long years from now (well the ones I´ve been experiencing, in total there are 34 common symptoms of menopause and you can pick as much as you like, yay!):

You just keep telling that to yourself gurl!

• Hot flashes- like one moment you seem to burn up and your face turns red and the next it´s gone and you´re freezing. And that only lasts a few minutes. But don´t worry, these minutes return several times a day.
• Sleep disorders- ha, wouldn´t notice that anyway! ;)
• Mood swings- oh well that could also just be my usual charming self...
• Irregular periods- as in my case none at all for months. But I guess this goes on the "yay" side. ;)
• Night sweats- been there, done that as B-symptom of my cancer. Thank goodness now it´s not that bad. Always look on the bright side, right? :)
• Hair loss- bwahaha, that´s right up there with "sleep disorders"!
• Difficulty concentrating, Memory lapses- Broccoli brain says "hi!"

Actually, now that I´m going through the list of symptoms I notice there are a lot I already have from cancer and chemo- also like depressive moods, urinary urgency, dizziness, headaches, digestive problems, thinning skin...

But I was told it was coming. It´s a side effect of my chemo. Infertility. Becoming infertile as a woman means going through menopause. We all know that.
I prepared as best as I could. I had the surgery. I did the cryoconservation of my ovarian cells. Leaving me with a slight chance of still being able to have children when I´m healed.
Even if that means that we someday will have to have a very awkward talk with our child how Mickey Mouse is basically its father. "You know how you always wanted to go as Mickey for Fasching? And we couldn´t stop laughing? Yeaah, you see....*giggle*"
It is possible to attach the cells to a mouse if it doesn´t work with me. Aaand then the egg will grow on the mouse and will be fertilized... and after that I stopped listening to the gynecologist cause I couldn´t get the picture out ouf my mind. And we spent the rest of the day making fun of Disneyland holidays and fun names to give to your mouse kid.
But seriously, it´s amazing how far medicine has come and I´m sure we will be a few more steps further on once I´m ready to have children. Maybe I can have a bunny kid, cause that would be so much cuter! ;)

But this is far from now and right now I have to live through menopausal symptoms together with my chemo side effects and cancer.

Taking a break, drinking Muschinski

So I had to take a break. The last round of CHOEP has been postponed to Tuesday because of my thrombocytes. Meh. *KitKat munching* BUT after whining and complaining about this for two days straight I actually got to see the good side to this. I completely forgot that I could feel like a normal person, without constant pain or nausea who just wants to sleep all day!

I mean sure, I´m still anemic and stairs are my mortal enemy and my spleen is annoying me as often as he gets the chance and I tire quite fast. Oh, and all that sweating! But this didn´t keep me from going to work on Friday (of course not working I´m not allowed to do that. I just wanted to drop off the cupcakes I made the day before. ;)), followed by a nice dinner with my colleagues and a fun evening with my friends in the pub (drinking Jameson and Ginger Ale, we dubbed it "Muschinski". And nooo, our humor is not infantile. Well, no more than it was with 15... ;)). And today I´ve been shopping (aww, how I´ve missed the terror in the eyes of my husband when I return!) and visited some friends. That´s more action than the last two weeks combined and I knoooow I will pay for it tomorrow (I can already feel my feet hurt and throb) but I also haven´t felt that good in the past weeks! I will also take the great opportunity to finally visit my sweet little nieces again cause my leukos are up. Who knows when I will be good enough again to see small children?

That´s how I imagine my demon. A complete jerk.

While focussing on fighting cancer and bitching about the one week I lost, I kinda forgot that I needed to live a little also. In the beginning I always said I didn´t want the cancer to control my life, it was still my life and I had the control over it. Well that was a bit naive cause there are things that come with cancer you just can´t control. And you have to admit to yourself that you´re sick and your body just doesn´t work like before. And sometimes needs a break (yeeeeah, I finally got that into my thick head also). It seems I´m still trying to find a way to live and fight with my demon at once without neglecting one or the other.

 But you also sometimes have to get your ass out of Whiney Town even though it´s exhausting. And for that I may need a ride from you cause my car´s almost broken down. It makes strange sounds and I´m afraid the tires are flat. So pick me up, will you?

P.S.: I´ve been looking for fun wigs and bandanas for my bald head, cause that´s one of the good sides of being bald. :) Not all have been delivered yet and I´m pretty sure I will buy some more (oh my poor husband ;)) but here goes what I have so far:

Okay, I also have a real hair wig (that was quiiite expensive) but I just can´t get myself to wearing it. Please stop asking why I´m not wearing it cause that just makes me feel bad for various reasons.

P.P.S.: As you can see, I just discovered Meme Generator for myself and it´s aaaawesome! XD