A post about France, to change things up a little

This weekend I got sucked into the suck pit of Facebook stalking. It started out innocently enough, and eventually turned into a full scale, internet-wide stalking of people I know in France. Let me specify that I was stalking French people I know in France, so don't get too excited France-dwelling anglophone readers. It was a huge, epic, legendary stalking experience. You can find out a lot about people even if you only know minimal information about them, like their first name, hobbies, and town in which they live. It's kind of creepy.

Anyway, obviously France is on my mind a lot these days, not only because I really enjoyed my time there, miss being there, and was hoping to be there again this year, but also because France is this magical place where I wasn't sick and was an independent adult, working, making money, paying my bills.

I wonder sometimes if I did enough while I was in France to meet French people and integrate into life in my town. Don't get me wrong, I'm happy with the people I knew and the things I did. Despite the notorious difficulty that anglophones have making friends with French people, I did make friends and go out and do things, but I wonder sometimes if it might have been different, if there was an alternate life I could have led with other people.

There definitely are other people who I could have met and hung out with, but I really can't think of any ways that I could have met them. I joined a choir, I took a pottery class. I could have joined other clubs but those were the ones that interested me, and I didn't have unlimited time, I did have to work and make lesson plans. I was friendly with the teachers I worked with, who were all at least ten years older than me with families. I went out with the two teachers who were close to my age or single and made friends through them. I explored the town on foot all the time, I went to local festivals and music events. I suppose what I regret is that there are some people who I knew casually and wish I had been closer to.

Overall I'm happy with the ways things were. I guess it's just human nature to wonder what if....

Epic Week

Or should I say, legendary?

Just had to work my new favorite show, How I Met Your Mother, in there somehow.

I had a super fun week! I was at the hospital Tuesday, Wednesday, Thursday, AND today!

Don't worry, I am fine, it was just for routine checkups and tests. Tuesday I had an appointment with my doctor, Wednesday I had an upper GI scope (read: they stuck a tube down my throat to look for GVHD) and colonoscopy, Thursday I had a PET/CT to check on my gut leukemia (there shouldn't be any), and today was another checkup with my doctor. They're keeping a close eye on me because I might have some GVHD cooking. Well, that's what they say, but I know they're really scheduling me for two visits a week because I'm so charming and amusing. I brighten up their days.

That's what I tell myself, at least.

For both the scope things and the PET/CT you have to take these preparatory drinks. For the PET/CT it's barium sulfate. It looks kind of like milk but more watery, and it has this nasty kind of chalky taste that they try to cover up with a little vanilla. You usually have to drink two bottles of it, but this time I told them I was having a lot of nausea and they only made me drink one bottle. Apparently they can still get a good picture with only one bottle of the stuff in you. So why on earth do they make you take two? From now on I am always going to tell them I'm nauseous so I only have to drink one bottle.

The GI scope and the colonoscopy were to look for GVHD and another virus, CMV, which is something that almost everyone has and can cause problems if it goes active. I thought I would be able to avoid a colonoscopy for another 25 years, but no such luck. To prep for the colonoscopy you have to drink this stuff to clean you out called "Go Litely" that comes as a powder in a huge gallon jug. You mix it with water and you can add flavor packets: cherry, orange, lemon lime, or pineapple. I chose lemon lime, thinking the acidic flavors would help cover up the taste of the Go Litely, which was certain to be terrible. Well, I don't know if the other flavors would have worked better, but the lemon lime didn't cover up anything, it just gave a sort of lemony overtone to a really gross flavor. I got through about half of the jug and then I vomited and didn't take anymore because I couldn't keep it down. Apparently it wasn't a huge deal because they were able to do the colonoscopy anyway.

Things I learned this week that I never wanted to learn: barium sulfate tastes better than Go Litely.

No definitive results back from those tests. My doctor thinks the PET/CT looks good, but he isn't a radiologist so we have to wait for the official word.

Last week I had a bone marrow biopsy. I am so glad I started getting sedation for those. I used to just do it with a local anesthetic, but let me tell you, being knocked out when you get a gigantic needle shoved into your hip bone to suck out the marrow is a really good thing. Especially since some of the doctors seem to have trouble getting into my bones. I drink too much milk, I guess. Anyway, that one came back with no leukemia and 100% second donor cells. So he is comfortably set up with a nice, healthy marrow. That's good news.

THIS is what I was talking about

Two posts in one day?! What?!

This is part of what I was yapping about on Monday. Cancer gets wrapped up in cute pink ribbons or posting the color of your bra in your facebook status. Seriously, WTF? Posting the color of your bra to "raise awareness" about breast cancer? That has absolutely NOTHING to do with ANYTHING. I'm sure it was very well intentioned, but honestly, putting a color in your facebook status does NOT DO ONE DAMN THING ABOUT CANCER, and as the woman in the first link points out, most breast cancer patients don't even wear bras because THEY NO LONGER HAVE BOOBS. How about taking five minutes out of your precious time on Facebook to call your representative or senator and tell them to pass health care reform? You know, something that might actually HELP people. Cancer is not pink ribbons and cutesy facebook messages and bike rides and walks. It is real people going through real pain. Stop making it seem like a trip to Disneyland: The Cancer Ward.

http://toddlerplanet.wordpress.com/2010/01/08/in-the-name-of-awareness/#comment-28736

http://blog.newsweek.com/blogs/thehumancondition/archive/2010/01/08/what-color-is-your-bra-facebook-s-pointless-underwear-protest.aspx

I'm actually in a pretty good mood today. I just wanted to post this to clarify Monday's post.

Now I'm going to bed.

Breaking News

I may be getting my taste buds back. Big emphasis on "may," but tonight at dinner I could taste the salt in the rice and the seasoning on the potatoes!

Yes, on Friday nights we sometimes have two starches because my dad has to have the special Friday night potatoes. I can't imagine what would happen if we didn't have roasted potatoes on Friday night. I think the Earth might stop spinning on its axis.

Because of the possible gut GVHD I'm not eating anything exciting these days, but stay tuned anyway to see if my very limited diet starts recovering flavor...

Maybe?

I had my weekly doctor's visit today. The mixed news is that I may or may not be working on some GVHD. GVHD, or graft versus host disease, is when my donor cells react against my body cells. All of the cells in your body have protein markers, called the human leukocyte antigen (HLA), and this protein identifies your cells as being "you." This is part of how the immune system identifies viruses and other infections and knows to attack them. I'm perfectly matched with my donor on the major antigens, but there are still some genetic differences between my cells and his cells, and this can cause his cells to identify my cells as "invaders" (whatever, he's the real invader). And because he is my immune system now, that means his cells (the graft) can attack my body cells (the host). Make sense? It's a little confusing. Basically, because I have the cells of someone else living in my body, there can be problems.

In the first 100 days after transplant you get what is called acute GVHD, with acute meaning it comes on quickly and can get serious very quickly, so it's really important to keep a close eye on things. The main sites for acute GVHD are the skin, digestive track, and liver. I might have a little bit of skin redness just starting, it's hard to tell, and I might have some GVHD in my gut; again, hard to tell. My doctor thinks it's 50/50 that I might progress to GVHD.

While this is an annoying problem, I'm wondering if it's secretly a good thing. GVHD oftentimes goes hand in hand with GVL, the graft versus leukemia effect. Part of the reasoning behind getting a bone marrow transplant is that the new immune system will be able to identify any remaining leukemia cells as being really bad and destroy them and keep them from coming back. The two effects aren't completely linked; there are people who never get GVHD and never relapse and there are people who get GVHD and still relapse (like me). In any case GVHD definitely indicates some kind of anti-my cell effect. My leukemia relapsed in my gut, so maybe if I get a little gut GVHD it wouldn't be such a bad thing?

See, I'm working on being optimistic and hopeful!

In other news, my brother is leaving to go back to school tomorrow. Finally! I will no longer be prisoner to the terrible TV shows he likes to watch! He likes to watch all of these gross boy shows, like this thing on MTV, I think it's called Wild Boys? Disgusting. Last night was the low point when he decided to watch Ultimate Fighting. It was truly revolting. Chick flicks and ANTM, here I come!

Resolutions and Realities

The last quarter of 2009 sucked. A lot. We all know why, no reason to rehash it all over again. 2009 was a terrible year for disease in general. I had three friends relapse, two friends received second transplants, two received their first transplants, and one died. Yikes. You can see why I was anxious for 2009 to just be over and done with.

Not that 2009 was all bad. I continued to enjoy my job in France and improve my French skills, I hope I made a difference in the lives of a few French kiddies, I traveled and especially enjoyed my vacation in Austria and Hungary with Leesa, I developed some very close friendships, and even though I didn't end up with a job that provided me with a visa to stay in France (which turned out to be a good thing), I did get called in for a few interviews, so the letters and CV that I put together were pretty successful.

Despite these good things, my memories of 2009 will always be shaded by the bad things that happened. I closed out the year ready for something new. I felt drained of optimism and hope, crushed by yet another relapse, the sheer number of pills I have to take every day (hint: over 30), my loss of independence, loss of an interesting life, and the lack of a job or classes or anything to motivate me to get out of bed and get dressed and showered on a daily basis (but just so we're clear, I still do, I just don't have a real reason to and most days I don't want to). I can't even use food as a crutch because it doesn't taste good or has no flavor.

There's a lot of "tyranny of positive thinking" out there when it comes to cancer. Sure, a positive attitude is important and you have to go in fighting for a positive outcome, but when it comes down to it cancer sucks a lot and both the patient and her supporters have to be able to be honest about that and acknowledge it. First, chemotherapy is absolute hell. You can't imagine that you could ever feel so bad. Then, not only is it totally dehumanizing to look in the mirror and not recognize yourself, but even more damaging are the changes you have to make to your life because of the treatments and not having a functioning immune system. The contrast between my life six months ago, when I was living in France, and my life now, living with my parents and unable to leave the house except to go to the doctor, is so absolute and soul crushing that it breaks my heart. Everyone thinks they want some time off, a little vacay to do absolutely nothing, but I can tell you, doing nothing gets really old really fast. There are only so many days in a row that you can lay on the couch watching TV and movies. And I do not have other options. I can't leave the house and go out in public because my immune system is still too weak. I'm not even supposed to drive. Stupid medications.

Not to mention, I'm going to have to start another chemotherapy regimen in the next couple of months because it is extremely probable that I will relapse again and we are trying to avoid that. But because my situation is so rare - a relapse in the digestive tract several years after a bone marrow transplant - there isn't any established plan of care so we're making it up as we go. I love my doctor and have absolute confidence in him and I know he's working really hard to come up with the best plan of action for me, but it also tells us something that he has to work so hard to try and keep me alive. That has a big hand in my lack of hopefulness and positivity.

And there you have it, the honest truth about being a cancer patient. Or at least a bone marrow transplant patient. I have no idea what kind of schlocky crap they are feeding to the nation over on Brothers and Sisters or Grey's Anatomy because I absolutely refuse to watch it, but this is my reality.

So my wish for the New Year is to have a little more hope for my future, a renewed outlook, more energy so that I feel like doing something besides lying on the couch all day, and fewer days where I feel emotionally blah.

Obviously a lot of the work towards a more positive me comes from me making positive changes in my life and actively working towards being happier, so I really don't need anyone to tell me that in the comments.

My other resolution is to be a nicer person. Not that I'm a mean person, but one can always be nicer.

Happy New Year!

A healthy, happy, and hopeful New Year to everyone! I am certainly ready for some new beginnings and a fresh outlook. Good riddance 2009!

Bonne année, bonne santé!