Some days you gotta dance

What changed? Nothing good.

That "stomach bug" I thought I had in my last post turned into massive, unbearable pain two weeks ago, causing me to call my doctor (transplant doctor, of course, because I don't actually have a primary care physician, oops). I ended up being admitted to the hospital with elevated liver enzymes and strong suspicion of gall stones. I wasn't allowed to eat for the next three and a half days because eating aggravated the problem. A couple of days later, sure enough, tests confirm gall stones, which had passed by that point. I had an endoscopic ultrasound (ie they stick a tube down my throat while I'm under sedation to get a picture of what's happening on the inside) to make sure things had cleared out, and at that time they took some tissue samples to see if GVHD was aggravating the problem.

The next day my world came crashing down around my ears... again. At the very end of the day the doctor came to give me devastating news. The tissue samples had revealed a hematologic malignancy in my gut - a blood cancer.

They weren't sure at that point if it was my old leukemia that had relapsed or a new cancer that had cropped up, the pathology lab hadn't finished their analysis. I found out last Tuesday that yes, I had relapsed, for the third time. Last week was a blur of tests and procedures - a PET CT, MRCP, bone marrow biopsy, lumbar puncture, and the placement of a stent in my bile duct to hold it open against the onslaught of rapidly growing cancer cells threatening to choke off the entrance to my intestines. The good news is that the leukemia is only in my gut; it is not in my bone marrow or my central nervous system. But how weird is that? I have leukemia in my gut, like on my pancreas and in my liver and stomach. WTF?!?

I started chemotherapy this afternoon. My mood has been pretty good today, I'm still in a lot of shock and denial, but I was not a happy camper yesterday. I was out of the hospital on a day pass and I spent part of the evening packing for my upcoming month in the hospital, just like I did five years ago when I was first diagnosed. I sat down on the floor of my bedroom and cried, just like I did five years ago, but I was not crying because of the unknowns and the newness of the diagnosis, as I did back then. I cried because I thought I wasn't going to have to do this again and I can't believe that I have to go through this again. I really thought that this time I was really safe, that I wasn't going to relapse again. I thought I was actually able to move on with my life, I was planning for the future, I was finally enrolled in classes to start moving towards the goal of medical school. Cancer has already screwed up my life enough, and here it is, back for yet another round. Jerk.

And here I am, back in the hospital. Again.

I'll get chemo for the next four days (five, including today) and then be in the hospital for a month as my immune system and the leukemia cells are killed by the chemo, which will make me extremely susceptible to infections. Then my bone marrow will grow back and they'll let me out. We'll probably do a second cycle like this in a couple of weeks later, depending on how many cancer cells we killed this time around, and then after that I will be getting a second bone marrow transplant. That is unbelievable. We can get into why BMTs are so intense another time, but trust me, they are very difficult. They have already identified 10 possible matches for me from the national transplant database, which is an amazingly high number. So far I feel OK - I'm not puking yet, let's hope it stays that way.

This will end up being my longest hospital stay ever. I will probably be in here for 5 to 6 weeks total, counting the week I spent here with gall stones and the week I spent getting testing done. I've done three separate month-long stays before, but this is going to be ridiculous. I just hope I will be able to keep myself from going totally crazy in here. I'm already thinking up ways to keep myself occupied and entertained, and suggestions are certainly welcome.

I will probably continue to update this blog during treatment, which is kind of depressing. This blog that I started to chronicle my time in France will become a chronicle of my third journey with this terrible disease. Instead of chronicling my adventures in Europe I will be blogging about the four walls of a hospital room. If cancer bothers you, you don't have to read my blog, see ya later. I like to think that I find the humor in the situation and can spin a funny story out of what happens in the hospital, so I promise it won't be all doom and gloom. It won't be exclusively cancer though, I still have lots of things to say about my time in France and observations about French culture and maybe other random tidbits of life when I eventually get out of here. You, the reader, should feel free to ask me questions in the comment section and I will try to answer the questions as best as I can.

One type of question I will not answer is any question or comment about my chances of "making it." First of all, I don't know what the survival statistics are for relapse of AML after transplant because I made a point of telling my doctors that I don't want to know and I will not be researching it on the internet. I imagine they are pretty bad and I don't want to hear it, I think that would be psychologically devastating. Secondly, the only numbers that actually matter for any individual patient are 0 and 100. You either live or you don't. I am going to try my very hardest to make sure that I live.

Fuck you, cancer.

I don't know why I am still surprised by the fact that life can change completely in just an instant.

Yeah, I know, it's been a while

Not only have I been busy trying to catch up with reading and homeworks and whatever else, I have also been knocked out by some terrible stomach bug. Yuck. Of course the illness had to hit before my first biology exam on Wednesday and when I have a problem set due and a big lab write up.... My immune system is definitely not worth all the money I paid (and am still paying) for it. Can I get a refund?

Classes are... interesting. In biology at least we're learning stuff. Chemistry, on the other hand, is mind-numbingly boring because we're going over all of this super basic stuff that I still remember from high school extremely slowly. I think it's going to get more interesting once we get done with this chapter and move on.

I like chem lab, bio lab is a completely different story. My TA is not terribly intelligent. I mean, she must be because she's a grad student, so somehow she qualified to get into a grad program, but she makes lots of mistakes about the subject matter we're learning in class. I'm in the first-year biology class, learning the basics of bio that support the rest of the discipline! She should know this stuff! Or at least have reviewed it before recitation!

The kids in my classes are interesting. They apparently have problems reading the instructions for the labs, so a good portion of the class did the lab wrong this week. Most people are not interested in making friends, which is weird, and I feel like a freak for trying to make simple conversation. Honestly, when did talking to the other people in your class go out of style? I mean, there are a certain number of us in the room, we're there together a few times every week, can't we at least make polite conversation with each other?

And then there are the clothes. I haven't seen anyone in pajamas yet, but wow, it's weird to see how differently people dress in the States. Well, let's say "In Soleil's America," because I live in Michigan, and the Midwest has a certain reputation for being, well, not terribly fashionable. Of course there's the typical "camisole + tshirt" combination that doesn't exist at all in France. Layering is an art form among French women, but they don't do it the way we do it. Flip flops are huge here and non-existent in France. Big sweatshirts or t-shirts with the names of universities or your high school sports team or a professional sports team on them. I really don't get why the French don't wear big sweatshirts. They are comfortable and warm. SNEAKERS! Everyone wears sneakers, and again, I don't get why the French don't. When walking long distances I like my feet to be comfortable and not screaming in pain because my oh-so-stylish-very-expensive-boots are pinching my toes, or cursing as the heel of the boot gets caught yet again in between the cobblestones. Clearly Americans win the Smart Shoe contest, even if uncomfortable boots are extremely cute.

Then there's the "I just got out of x sports team practice and I couldn't be bothered to change my clothes but I did put on make up" look. I really don't get the jock-chic look. You know what I mean. The girls who come to class in gym shorts, t-shirts, hair in a ponytail with a cloth headband around the crown of their head, complete with perfectly applied mascara. There are a few possibilities here. One, they did just get out of gym class and stopped to put on mascara but not to shower or change their clothes. Two, they are going to gym class later and will have mascara running into their eyes once they start sweating. Or three, they dress like that because it's some sort of fashion statement. It's mostly the makeup that I object to, otherwise I have no problem with gym clothes in the classroom. Do you really need to wear full make up to go to soccer practice?

Not that I prefer French fashion, because frankly a lot of it is ridiculous and I saw plenty of fashion victims at the lycee where I lived. And I am certainly not at all fashionable. I can barely make myself presentable in the morning, let alone be in style. I just think the differences between the two countries are very interesting. Actually, the people here who dress the most like the French are the Muslim girls who cover their heads and dress modestly, which is funny when you think of the French attitude towards the foulard.

Busy Busy Busy

Sorry for the lack of updates, I have been very busy this week! Mostly it's my own fault, I went to Boston last weekend to see some friends from college, didn't do any work, and had to scramble to get things done after I got back Monday evening.

Of course the other reason I've been so busy is my fault too... I'm terrible at math and it took me ages to figure out the chemistry problem set that was due on Thursday. I really try, but I'm just bad at math, my brain doesn't work that way, and I already know I got at least one question wrong on our quiz on Thursday. Scientific notation is my enemy. Of course the problem set had nothing to do with chemistry, it was all converting numbers. Ridic.

I'm trying to catch up on blogs from the past week and find time to write something more interesting here. I already know I have one coming about the way people dress in the US, it's a major culture shock!

This is NOT for grown ups

My classes are.... frustrating.

I had my first bio lecture on Wednesday. I looked around the room, saw that there were a good number of older-than-college-age people there and was glad to see that I wasn't even the oldest one there. There are tons of left-handed desks so I was happy about that too (yes, I am left handed, and yes, it is hard to use the righty desks).

Then the actual class started. We spent about half the class going over the syllabus, which I was annoyed about since we had already recieved it by email a couple days before, but you know, not a big deal. Then the professor asked for kids who were in their first semester out of high school to raise their hands. Only about 70% of the class did. The professor then asks the rest of us to bear with him for a few minutes. He changes the slide on the power point to one titled:

This is NOT High School

I almost got up and walked out of the room. Seriously?!?!?! Do the kids who just got out of high school even need to see this slide? He was just making the point that no one is checking up on them to make sure they go to class, do the readings, do the assignments, etc., but if they don't do them they will fail the class. Good grief.

Then we finally had five minutes where we actually discussed biology. The lecture on Friday wasn't much better, it was a simplified, glossed-over version of the reading. I have a feeling this is going to be a frustrating class.

The first chemistry lecture was similarly frustrating. Remember those old overhead projectors from elementary school? The teacher still writes on those while she's lecturing. I find that sort of endearing actually. BUT, we went over the difference between the English and Metric systems, which I can understand for maybe high school chemistry but all of us in the class have presumably already taken high school chemistry. And then we talked about the difference between a meter and a kilometer. And a centimeter and a meter. And a millimeter and a centimeter. And how to convert fahreinheit to celsius. And the abbreviations of common elements, like how oxygen is O and hydrogen is H.

OMG, shoot me. Or throw a brick at my head. Something to stop the inanity.

Maybe it will be better in a couple of weeks after we start getting into meaningful content? The frustrating part is that I have to keep going to classes to get homework assignments, and I'm too much of a goody-goody to just skip class. I might have to start a drinking game. Take a drink every time the chemistry prof has to review the abbreviation for carbon. Take a drink every time the bio prof has to remind us that we aren't in high school.

I hope the semester won't be as long as it seems like it will be right now.

School starts this week. I bought my books, some notebooks, a planner. I haven't bought an agenda planner in a long time, despite the fact that they definitely help keep me on top of things. Note to self: buy agenda planners every year. Having an extra tool to help organize my life is a good thing.

I decided not to take a French class this semester. I checked out the class books when I was at the book store today and decided that the level of French in the class will not be high enough for me and therefore not worth my time. Aren't I a snob? Hopefully next semester they'll offer something better. Until then, it will be my French conversation group, France 2 news, the books I bought before I left, and CM2 and 6eme cahiers de vacances for me.

I'm not so thrilled about taking classes with 18 year olds. I'm signed up for bio and chem and their labs and I know they are going to be stuffed with kids fresh out of high school. Hopefully there will be some other non-traditional students like me who I can make friends with, and then we can roll our eyes at the kiddies together. Or maybe I'll meet some freshmen with hookups to all the cool frat parties and then I can do research on the spread of STDs in the college population.

One or the other ;)

The Deal for This Year

I'm sure you've all been waiting with bated breath to hear the latest in my quest to return to France. The verdict is that unfortunately this isn't my year to spend in France. I couldn't find a job that would keep me there, or to be more precise, a job I was willing to take that would keep me there (meaning not a bilingual secretary position or one that would have required a student visa and only in the Paris region).

BUT, that does not mean I am never coming back.

The plan for this year is to stay in the US, take some classes, work a little, and spend some quality time with the American health non-system. I'll be enrolling as a non-degree seeking graduate student and taking biology and chemistry and their labs, and hopefully a couple of other classes in history and anthropology if the professors ever get back to me about getting an override so that I can get in despite the fact that they are already full. Job wise, I may be working as an ESL tutor in the public schools here. We have a huge population of international students because many adults with families come from abroad to seek graduate degrees at the university and then their kids end up in the public school system and need to learn English. There's an orientation/information session next Tuesday so I'll know more about it then. It probably pays pretty badly, but I'm used to being paid badly to teach kids English. At least I know that the English classes will be a priority here!

I will also be getting some neat-o high tech treatments while I'm home to make "my" immune system start behaving itself. For the past couple of months I've been experiencing a flare-up what is called graft versus host disease, or GVHD. Because the immune system I have isn't a perfect genetic match for the rest of my cells, it can start thinking that my cells are invaders and attacking them, and that is called GVHD. I have very mild GVHD, basically mild skin tightening and darkening. I'm lucky that that's all I have, it can get worse, for example, joint tightening and lung problems. Unfortunately there are very few options for bringing GVHD under control. The number one option for many years was high doses of steroids (prednisone specifically). Been there, done that, it SUCKS and I refuse to do it again. Now a new kind of space age medical treatment called extracorporeal photopheresis, or ECP is quickly becoming front-line treatment because it doesn't have all of the terrible side effects of high dose steroids. You can read about what actually happens during ECP in the link above, the most simple explanation it's a blood treatment and takes about 4 hours. ECP not only stops the GVHD reaction, it prevents it from occurring again, and improves GVHD symptoms, joints loosen up and skin regains its normal color. The mechanism by which this happens is not fully understood so I'm part of a research study that is looking at how my white blood cells change during the course of treatment. I've gotten ECP treatment before both in the US and in France (which was a complete disaster, thank you bitch nurses) so this isn't anything new to me. The annoying part is that it takes up so much time, right now I'm getting two half-day sessions every two weeks, although that will probably switch to one session every week once classes start up.

Why is it necessary to do anything about this mild GVHD that only makes my skin funny colors? Because GVHD left to its own devices will slowly but surely progress into more serious forms that involve joints and other organs, and that would be very bad. By going through treatment I will prevent that by nipping GVHD in the bud now while it's still mild. I'm also still on immunosuppressants from my transplant almost four years ago, and hopefully once the ECP has controlled the GVHD and I'll be able to finally get off the immunosuppressants..... and then get off my other meds ....... and then get some vaccines...... and then .... I don't know what comes next. Anyway, best not to count my chickens before they've hatched.

So how exactly am I planning to return to France? I'm going to try to do an internship in Paris next summer, maybe combined with taking classes. That way I could spend many months in France since classes here will be over at the end of April, I could visit my students before school gets out, and I would have the entire summer to travel, I could even take a whole month at the beginning or end to travel. Leesa, are you listening??!!! I have some ideas for spending the next school year in France as well, but it's all theoretical, at this point my first goal is a summer stage and then on verra.


In the meantime I will be here, trying to have a social life but also trying not to let my roots grow too deep in the ground. More about that next time, because this post is already too long and if you stuck it out to the end, good for you.