Monday, November 30, 2009

Back to the Big House

Today I will be readmitted to the hospital for my bone marrow transplant. I will have five days of chemo and will have my actual transplant on December 8th. Here is a brief primer of what actually happens with a bone marrow transplant.

First step: identify a donor. Every cell in your body carries a protein marker called a human leukocyte antigen (HLA) that identifies it as being uniquely yours. It is important to match these proteins as closely as possible between the donor and recipient to avoid problems like graft versus host disease and rejection of the transplant. These proteins are determined genetically, so the logical and easiest place to find a donor is in the family. My brother and sister were tested the first time around, but of course they don't match me. They've never been of much use to me anyway. Only about a third of people needing transplants actually do find a match in the family, and the rest of us go to the national donor registry to see if someone there matches us.

Step One has been accomplished. A 27 year old male donor from America has been identified as a perfect match and has agreed to be my donor (I know I told some of you that he was 25, but I was given incorrect information). What are the chances that when we're allowed to meet we'll fall in love and get married? I should get some kind of benefit out of this!

Step Two: Recieve chemotherapy to kill off and kick out current bone marrow to make room for new bone marrow. I'll be getting two different chemotherapies, clofarabine and busulfan, Wednesday through Sunday. Monday will be a rest day. We have to get rid of my current bone marrow before I can get another one, and the chemo will kill off some of the remaining cancer cells. Even though I had a complete response to chemo, that doesn't mean all the cancer cells are gone. We know that some are still there, we just can't see them.

Step Three: recieve the actual transplant. December 8th is the big day, Day 0 in transplant speak. The transplant itself is just a simple intravenous infusion, exactly like a blood transfusion. No surgery. I will start taking immunosuppressive medications to prevent graft versus host disease. Then the fun part starts.

First we have to wait for engraftment, which is when the new bone marrow starts growing and producing cells. The bone marrow cells will actually find their way into the bones on their own, but sometimes they don't. This is a critical step. Engraftment usually happens around Day 10-12. Once I have a high enough white blood cell count (produced by the new, engrafted marrow) they will discharge me from the hospital and I can go home. Last time I got out on Day 17.

While waiting for engraftment I won't have a functioning marrow, so I won't be producing any white blood cells (immune system cells), red blood cells (carry oxygen around your body), or platelets (clot the blood). I'll be getting transfusions of red blood cells and platelets but you can't get white blood cell transfusions (see above about HLA typing) so I will be at very high risk for infections and will have to be extremely careful. LOTS of Purell.

In fact, I will have to be extremely careful for a very long time after transplant because my new immune system will be like a little baby - very weak and not knowing what to do, and I will loose all of my immunizations. Any infection could kill me, so for the first 100 days after my transplant I will not have visitors and I will only leave the house to go to the doctor. After Day 100 I will have some visitors again and perhaps venture out a little bit more. I haven't really decided what to do after Day 100. Last time around my doctor had very restrictive rules and told me not to go out for a year after transplant, so I didn't. I hardly saw anyone outside of my immediate family and I only left the house to go to the hospital for an entire year. It sucked a lot, and once was enough. I don't want to do that again, but it's hard to know how to balance the whole not wanting to get sick and die thing with the not wanting to die of boredom thing. To be determined. I'll also have to follow a low microbial diet (aka neutropenic diet) for the first 100 days - no restaurant food, no raw fruits or veggies, no raw or undercooked meat, no moldy cheeses, etc.

See why I spent so much time going out to public places and eating things this past month?

This is just a rough overview and I'll go into this in more depth later. For now I am going to enjoy my last few hours at home as a free woman and spend as little time thinking about the transplant as possible.

Wednesday, November 25, 2009

I am thankful for...

... my couette, aka my duvet. It is fluffy and warm and I love it.

... ice cream!

... The Confessions of Georgia Nicolson series of books by Louise Rennison. Like Bridget Jones but with teenagers instead of 30-somethings. Absolutely hilarious. Not great literature but for those days (and I'm having a lot of them right now) where you just want something light and funny that you can pick up and put down easily.

... the wonderful doctors and nurses at my hospital who take excellent care of me, especially my doctor, Dr L. I saw him in clinic on Tuesday and not only was I yet again impressed by how intelligent he is and what a wonderful command of the literature he has, but also by how hard he is working for me. Late relapse after transplant is not very common (although as more people are surviving transplant they are finding that there are more and more late relapses) and then add to that the fact that the leukemia relapsed outside of my bone marrow in my digestive system, which is extremely, extremely rare. He is dealing with nearly unchartered territory and making up what to do as we go along, while always basing his recommendations in very sound science. As he said to me on Tuesday, I'm pretty much getting an individualized treatment. There isn't a lot of standard procedure to work with here because this kind of thing happens so rarely. I am so thankful that I have such a caring and competent physician who is willing to do absolutely everything he can to give me the best chance for a cure.

... My wonderful friends, who stick by me through thick and thin.

... My amazing family, who are stuck with me through thick and thin.

... being alive.

Happy Thanksgiving to everyone!

PS I made my students make little turkey hands and write "I am thankful for ..." the past two years. They were so adorable! A very successful activity. They had a little trouble with the hand tracing part because I demonstrated it on the chalkboard first for them, but I am left handed, so the right handed kiddies were always a little confused. Kids are so cute!

Monday, November 23, 2009

Things I've done since my last post

- Ate ice cream at Sanders! Sanders is a classic Detroit/Southeast Michigan ice cream parlor. They are famous for their AMAZING hot fudge and for inventing bumpy cake. Of course I was too busy scarfing down my absolutely enormous double sundae with milk chocolate hot fudge and bumpy cake ice cream to bother taking any pictures, but this gives a pretty good idea of the deliciousness that was consumed. They make the best hot fudge you will ever eat - super thick and rich, and kind of chocolatey-caramely in taste. Yum!

- Tried more cupcakes! Cupcakes were available in large and mini sizes, which I like because that means you can try a bunch of flavors without overstuffing yourself. My favorite was the chocolate petals flavor, a rich dark chocolate cupcake frosted with perfect buttercream (just sweet enough, not super sugary, good texture). This time I actually did take pictures of all the cupcakes we tried.

From top: pumpkin cupcake with cinnamon frosting, carrot cake with cream cheese frosting, chocolate petal with buttercream frosting, vanilla with coconut frosting

Close up of the chocolate petal and coconut. I'm a terrible photographer, but this one turned out okay.

Bumpy cake!

From top right: chocolate cupcake with peanut butter frosting, coconut, cookies and cream with oreo frosting, and candy apple or apple pie (something apple-y and seasonal)

- Attended a funeral. Ayanna was a beautiful, very well behaved, dancing, Disney loving two year old girl. For part of the time I was in the hospital Ayanna, her mother and I shared a room. Her mom and I hit it off and spent several nights staying up very late talking and joking and trying not to wake the baby. Ayanna passed away very suddenly a week ago. The funeral was on Friday.

- Heard some people talking after the funeral about what a bad idea health insurance reform is and how the Democrats want to turn America into a socialist country. Of course these nutcases didn't stop to think that a public insurance option might have really helped this little girl and her family out. Some people in rural Michigan are pretty nuts.

- Had my first cavity ever filled. I was kind of nervous. I just don't have room in my life to deal with extraneous health issues. Cancer, fine, I'm used to it, I deal with it somehow. Cavities freak me out a little bit. Happily everything went smoothly, I didn't feel anything, and it took 30 minutes including numbing time. Recovery time was basically zilch; I felt like I had a fat lip for a couple hours and then it was fine and I only have a little bit of soreness. I'm actually pretty amazed at how quick and painless it was.

- Was introduced to Firefly. I had never heard of it before, but supposedly it's a cult classic. It was fun, I liked it.

- Tried to not think about transplant as much as possible but that's hard to do that when they keep making me come in for appointments and cut down on the amount of time I can spend going to dirty public places and eating food. I will be there alllllllllll day tomorrow. Ugghhh.

Thursday, November 19, 2009

I did it, but I blew it

I'm sure most cancer patients do it, because I definitely do. We imagine situations where someone bothers us about our hair and how we would respond. I've never actually been in a situation where someone gave me a hard time about being bald, so none of these imaginary things to say have ever been necessary.

Today I was at the mall because I'm trying to visit every germy public place that I can before I have to go into seclusion for my transplant. One of the delightful parts of being at the mall is all of the little kiosks where people try to sell you whatever weird product they are pushing, usually some kind of perfume or lotion or nail thing. I don't like being harassed in the hallway of the mall. I'm usually in a hurry, and no, I don't want your silly nail strengthening product.

As usual, a salesgirl harassed me today. I tried to avoid her by peering intently into the Banana Republic window display as I rushed by, but no, her incessant calling of "Miss! Miss!" forced me to pay attention to her. I really hope she doesn't spray me with perfume before I can say no, I thought to myself. And then she asks a question:

"How long does it take you to straighten your hair?"

As I've said before, I'm not actually bald yet. I have very, very thin hair that I'm keeping in a ponytail, which mostly conceals bald spots and makes it look like I still have a mostly normal head of hair. My hair is pretty thick normally and I had chemotherapies that aren't too hair toxic, so the two combined mean that I have been able to pretend I still have hair, even though I don't really. But I'm the only one who knows that, and it's complicated to explain why I still have hair despite having had chemotherapy, or I did actually have chemotherapy despite the fact that I still have hair. It's confusing. And I know that eventually I will be completely bald and have no hair, so in my mind I basically don't have hair right now.

There are so many ways I could have responded, and I chose the most illogical one.

"I have cancer. I don't have hair." Then I walked away. I immediately felt bad.

There are so many ways I could have responded. A simple "not interested" or "no thanks." Or just walking away without saying anything. Or if I really wanted to bring cancer into the discussion, I could have said "I have cancer, I'll be bald in a couple of weeks." That is actually a true statement. But I chose to say that I have no hair currently, despite the fact that I do have hairs attached to my scalp on my head that everyone can see. She probably thinks that I was lying about having cancer just to get away from her. Awesome.

What really bothered me though, and what bothers me now, is that it really wasn't necessary. She was just trying to do her job, it isn't her fault that I have cancer or that I'm mostly bald and won't have to worry about straightening my hair for a very long time. She probably feels badly, and there was no reason to say something like that to her. I'm also irritated that I blew what is probably the only chance I'll get to say something like this to someone. It will always be a bad story about how I screwed up and was unnecessarily mean to some poor salesgirl.

Now I had to do something to make myself feel better, so I decided to get some Starbucks and grab a cupcake from a new cupcake stand in the mall. I had to do a taste test for Leesa, who is famous for her cupcakes! I highly recommend the seasonal Gingerbread Latte at Starbucks, and my cupcake was AMAZING. See how good it looks:

I chose the Samoa Cupcake, which is "Coconut graham cracker bottom below our coconut chocolate chip cake topped with our coconut graham cracker crumble then drizzled with caramel and our homemade ganache." This cupcake was fantastic! It was super moist, the chocolate chips were yummy and melty, the coconut was just sweet enough and not too sweet, it was just super delicious and huge. It's from a local, family run bakery and I highly recommend stopping by one of their stores if you are ever in the Southeast Michigan area. Note: their location information is not up to date, they have at least one other location, and I know because that's where I was today!

Sunday, November 15, 2009

An Evening Spent in French

Last night I was invited for crepes by one of the other girls in my French conversation group. She is French, and her two French friends were also there, so I spent the whole evening speaking French. I was ravie to have the opportunity to really speak in French again! It's been almost two months since I've spoken French for an extended period of time. I could tell that my French has suffered since I've been back in the US - my accent has gone downhill, I'm starting to forget words, I don't speak as quickly as I used to. Overall though I felt pretty good, I didn't have to search for words too often, I felt like I switched into French pretty easily, I wasn't constantly thinking about how to conjugate verbs and making nouns and adjectives agree. I know I made mistakes, but I haven't totally lost it yet.

Of course we had to talk about my impressions of France and their impressions of America! It was interesting to me to see a little bit of our culture through their eyes and how after being in America for a while they had changed their ideas about certain things. Some interesting discussions we had:

- they seem to think we have a lot more bugs in the US than in France and therefore we need mosquito screens more than they do. I disagree! If I left my window open at night during the summer in France my room would be full of bugs! I eventually learned to pull the curtains closed over the window opening so that the bugs were fooled, but I still spent a lot of hours killing things that got in my room.

- we talked a lot about how accueillant Americans are vs how cold the French can be. One girl said that she likes how Americans are so friendly and welcoming, but at the same time it makes her a little uncomfortable because it's not the type of behavior she's used to.

- they have all decided that the French are pretty ridiculous about always having to be made up and dressed to leave the house, no matter for what or at what time of day. They said that after being in the US and getting used to the idea they are OK with leaving the house less than completely perfectly dressed. One girl sent a set of velour loungewear to her sister in France. The sister had called her up and demanded what she was supposed to do with these things!

- how great it is that stores in America are open ALL THE TIME - Sundays, holidays, after 8 PM, you know, whenever stores in France are closed.

- they think that Americans take more advantage of their time off than the French. We don't take vacations, but we do try to take advantage of time spent not working, for example, going out with friends on weekends and weeknights, finding things to do, joining clubs, going bowling, etc. They think that the French take their vacations and free time for granted because they have so much of it. I don't know how much I agree with this one, but it's an interesting observation.

It was a great evening, and I hope that there are more to come!

Monday, November 9, 2009

Ice cream and France/America comparisons

A few weeks ago, while I was out on a day pass from the hospital, we stopped at a local ice cream place (which I just realized I can't link to if I want to maintain my thin veneer of anonymity). At this point I had been rapidly losing weight and had just been put back on a normal diet, so I decided to gorge myself on ice cream because I love it. It might be my favorite food, and if you look at Leesa's blogs, you'll see that I've eaten ice cream all over Europe, so I have a strong base for comparison of flavor, texture, and of course the amount of ice cream they give you.

I ordered a medium cup, so two scoops of ice cream. Not anything excessive, right? Well, I had forgotten how big American serving sizes are! I was handed a massive mountain of creamy goodness. I don't think this size exists in Europe, unless you can find XXL ice cream sizes there somewhere. Not only was this thing enormous, it also cost a mere $3.50. Dollars! $3.50! A medium anywhere in Europe will set you back an average of 4 euros, or $6. Not to mention the fact that it will be much, much smaller, approximately what we would consider junior size. This ice cream was so big that I had trouble finishing it. I know people say the serving size difference between the US and France is part of why we are all so fat, but I have to say I don't really think it's a bad thing. We get so much more bang for our buck here! I would much rather eat an enormous thing of ice cream that I find well priced than a tiny little thing for a lousy 5 euros.

Of course I don't have pictures. I'll just have to go back and get another one to prove how different the ice cream sizes are. The ice cream was of course delicious, but I think should have been stored at a less cold temperature because it was very hard. You don't want to have to chip away at your ice cream for ten minutes until it melts to the desirable consistency.

Another comparison: ease of getting things done. A few days ago an alert popped up on our TV, something about the switch to digital and that we need to get some equipment from Comcast to preserve our service. I don't really know what the deal is because we have new digital capable TVs and I don't know what the problem is. Anyway, the boxes we have to hook up to the TV arrived today. My parents set them up after dinner tonight, and they kept griping about how annoying it was that the boxes wouldn't just start working on their own once they had been hooked up, that they would have to call Comcast to activate them.

I burst out laughing.

I couldn't help it! How easy is this! We get these boxes that we hook up ourselves, then call Comcast, they push a button, and the problem is solved! Can you imagine how it would work in France? First you would have to call France Telecom to get the boxes sent. Then you'd have to call the guys from Neuf or Orange to come to your house to hook them up, but it would take a month to schedule it. Then they would tell you that France Telecom had sent you the wrong boxes, so you'd have to start all over from square one. You'd finally get Neuf to come attach and activate the boxes, but then your cable, internet, and phone would stop working. You'd call Neuf again, you'd have the same problems scheduling them, and it would take another month to get them to come out a second time. They might finally fix it, but chances are you would have some other problem crop up that might finally be resolved six months after you called France Telecom for the stupid boxes in the first place!

I really laughed at my parents tonight. They have no idea!

Saturday, November 7, 2009

Skinny Jeans

As I said earlier, I lost quite a bit of weight back in the days when I wasn't allowed to/didn't want to eat. More than 10 lbs. I wasn't overweight before but you know, everyone has a little extra something they want to loose, right? I'm actually skinnier than I can ever remember being, and I am kind of delighted. Best diet ever!

Of course, the down side is that even though I'm out of the hospital, I'm not really going anywhere, so it's all a waste. I'm not showing it off to anyone. I'm shlubbing around my house in PJ bottoms all day. I'm mostly bald - errr, have very thin hair cleverly arranged in a ponytail to cover my scalp. I'm not really in the position to run around town all dressed up showing off how skinny I am. Even if I was, the only pair of jeans I have that fit me right now (that I bought at the end of my first year in France when I was almost as skinny as I am now, so they are a little big on me anyway) have a fly that won't stay up and has never stayed up. I have three no goes here - no real reason to leave the house, no hair, and the high probability of humiliation from being seen in public with an open fly.

What on earth is it with French jeans anyway? I have a few pairs of jeans that I bought from French clothing stores and NONE of the flies stays shut. One that stayed shut for a while, until that fly stopped working too. Isn't France supposed to be known for fashion? Why can't they make a decent pair of jeans? Anyone else have this problem?

See, even though I'm in America now, I can still blame France for all of my problems!

Just kidding. I know that the obvious solution to, well, two of my three problems, is to go out and buy a new pair of jeans, but it's considerably less funny to be rational than to just blame France.

Wednesday, November 4, 2009

Second Birthday

Not only was November 4th my first full day out of the hospital, but it was also the 4th anniversary of my first transplant, or my second birthday. I didn't actually tell anyone this, which is weird because I spoke to many friends today and yet I didn't say anything about it being my fourth second birthday to anyone, even though it was on my mind all day and is kind of a big deal. Maybe it was just too complicated to get into.

It was a day of very mixed emotions. On the most immediate level, sucks to be contemplating my second transplant on the anniversary of my first transplant. How many additional birthdays does one person need? I already have two, I really don't need or want a third. Instead of continuing to move on with my life and progress in all of my plans for the future, I'm back where I was four years ago, staring a major medical procedure in the face with my future on hold and uncertain.

On another level, it's a great day, because in the four years since my transplant I've done so well. I graduated from college and lived in France for two years. I lived in France for two years! I became pretty fluent in French, managed my way through French bureaucracy, traveled all over Europe, met amazing people, and generally had this wonderful experience teaching children how to speak a little bit of English. Even for someone who has been healthy every single day of their life that is pretty incredible, and I wouldn't trade that experience for anything. In fact I would almost certainly never have done the assistant program if I hadn't had a transplant. Going through the transplant and the year of isolation afterward made me want to do something more than just continue through to graduate school like a drone. It made me want to do something bigger, something insane like go live in a foreign country. Funny how life works out.

Even though my last transplant wasn't the ultimate fix, it still did a pretty good job for four years, and I have a lot to celebrate, regardless of what is to come.

Monday, November 2, 2009

Pediatric Hospital = Free Stuff! And some good news!

I got my first transplant four years ago in Boston (four years ago on Wednesday the 4th, actually. Happy 4th second birthday to me?). I lived in Boston with my mom for about four months, through the first 100 days after my transplant. The first 100 days is the most critical time, when your new immune system is the weakest and when you can get some pretty serious complications. Anyway, after 100 days when everything had gone smoothly we were given the OK to go back to Michigan. My doctor in Boston is BFF with the head of pediatric bone marrow transplant here, I think they went to medical school together, so he wanted me to be seen by him. I have been a pediatric bone marrow transplant patient ever since.

There were some immediate differences I noticed between adult and pediatric care. Peds doctors are much more concerned about thorough follow up care and quality of life issues. It makes sense; pediatric patients have their entire lives to live out, adult patients might be 50 years old when they go in for transplant and not have to worry about things like early menopause and how that affects their body. Almost as soon as I showed up in the pediatric clinic I was scheduled to for appointments with an eye doctor and a gynecologist, both of whom deal almost exclusively with transplant patients. I was also scheduled for a litany of tests - cardiac, pulmonary, I don't even remember what other tests. This was all done to make sure things were functioning well and to have a base line in case anything changed in the future. It kind of irritates me that these things aren't done for the adult population. More and more people are surviving cancer for longer periods of time and oncologists need to start thinking more about long term living issues, like if the lungs are working properly and how women younger than menopause age are managing being in menopause.

As an inpatient I notice the same difference. Physical therapy came up to see me one of my first days in here and gave me several different exersizes to keep me from sitting around like a lumpy potato during my hospital stay, and then came up to do a special work out with me once a week. Of course much of the difference I notice is just the fact that it is a children's hospital so they have an activity room with art projects, video games, pool, air hockey, a Wii, TVs, all kinds of toys for little kids. There's a lounge upstairs with similar stuff. Art and music therapists will come by if I want them to. I've had a few sessions with the art therapist where I made some embarassingly bad silk paintings that my mom can display proudly like the lopsided pinch pots I used to make in elementary school art class. There's a dog that comes around to visit every week, and even though I can't pet it because it's probably full of diseases, it's nice to have a puppy come in my room. Athletes from the university come by every Thursday to visit with the kids and give out autographed hats and t-shirts. I haven't had them come visit me (they always ask if you want to be visited) because I feel weird being so much older than them. It isn't as if it's always the football and basketball players either, it's usually the crew team or something random like that. Although I did think I saw the football coach up here last week....

Then there's the free stuff. You make out like a bandit in the kids hospital! Everyone likes sick children so there are all of these volunteer organizations that make things for the patients. Part of the difference between the two hospitals in this case might be geography rather than adults vs peds - I am in the Midwest, we're nice and we do crafty things that East Coasters don't do, like quilting. Yes, today I was given a quilt. I've also gotten a fleecy pillow, about 15 pillow cases, and a ton of stuff for Halloween. Best of all, they have a book cart. Unfortunately, the books are all for children or teenagers, but if I wanted I could get a free book twice a week. How cool is that?! One time some guys came by trying to give away toys and t-shirts. It's like a continuous stream of presents, and you know, it really does brighten your day to know that all of these nice people are trying to help you feel better.

Moral of the story: if you have to get admitted to the hospital, get admitted to a peds hospital. You'll be glad you did.

We had some GREAT news today! I had a PET/CT scan this morning to see if the chemotherapy did its job and killed some cancer cells. Result: Complete Response, which means they didn't find any disease! Good job chemotherapy!

The other excellent news is that they are planning on discharging me tomorrow, provided I don't start running a fever or speaking in tongues or something. Tomorrow will be Day 36. This is officially my longest hospital stay ever. I will be so glad to be out of here! Fingers crossed it goes off without a hitch.