Things that irritate me

In the spirit of tapering off steroids, which makes me a major grump, and in the hopes that airing these frustrations with the rest of the world will help me stop obsessing over them, here is a list of things that irritate me. No serious things, like poverty and hunger, just the funny ones.

Twitter
Yet another genius way for people to tell me things I don't care to know. I'm at the end of my rope with twitter right now. The majority of the people I follow on twitter are people from France, and reading about their escapades and watching them banter back and forth all day long just reminds that it's a world I no longer belong to, and that I do not have anything interesting to tweet about. Last week and this week I'll be spending four days at the hospital getting transfusions and testing and what not. Fun topics to tweet about, right? It makes me insanely jealous. I will be taking a twitter break for at least this next week to try to keep myself sane. We'll see if it lasts that long. As much as twitter is poisonous, it is amazingly addicting.

People who complain about things that are their own fault
This is another reason why twitter irritates me. It's yet another forum for people to complain about everything, no matter how trivial. Facebook, are you listening??? I hate it when people complain about things they could easily fix if they just sat down and thought about it for a couple of minutes. First on the list is, of course, money. I know that the economy is terrible, that most people my age are working crap jobs and not making a lot of money, but if I have to listen to another person who is constantly going out to restaurants, bars, movies, etc complain about their finances I am going to scream. You want more money in your pocket? Cut out your daily coffee, that'll save you a bunch every week. Go out to a restaurant only once a month, go to happy hour for drink specials instead of spending an arm and a leg at the bar, or pre-game it at your house college style.

Related to this is when people complain that they can't travel because they don't have enough money. Well, in order to travel you need to save up for it folks! I traveled a bunch while I was in France but I saved the money to do that by buying cheaply at the grocery store, usually not going out for coffee or drinks or anything more than twice a week and even then limiting how much I consumed, watching how much I spent shopping, and taking advantage of travel sales and my Carte 12-25.

Related to this is when people complain that they don't have anyone to travel with. It's true that for some destinations traveling can be prohibitively expensive if you're only traveling with one person, and it's great to have a travel buddy, but don't restrict yourself just because you don't like being alone! You will certainly meet people if you stay in a hostel, and you'll regret not traveling a lot more than you will regret traveling alone. Sure, it's a little awkward to eat dinner by yourself, but who cares? You will literally never see those people again. If it bothers you that much get a take out kebab and eat it on a bench outside or in your hostel. I'm so glad I took a chance and went traveling by myself: Strasbourg, Bruges, Brussels, Chartres, Rouen, and kind of London and Nice (had friends who lived in both places who I hung out with for some of the time I was there). And of course most of the times I went to Paris I went in by myself for the day, did whatever I wanted and then went home in the evening. You will miss out on so much if you can't just get up and go on your own.

Steroids
Duuuh.

When I don't get my food right away at a restaurant
When I go out to a restaurant to eat, I'm hungry. I'm ready to eat right after I've ordered, not 45 minutes later! I understand that it means they're making my food nice and fresh, or that they're backed up in the kitchen, there are many reasons for the wait. I just want my food! I don't want to fill up on bread, I just want the food. I don't like it when it doesn't come out right away, which is of course, never. Now, when we went to Macaroni Grill on Sunday night to load up on pasta before Pesach they were very fast, so they get big points for that. And weirdly, the restaurant was more full when we got there at 6:20 than it was when we left over an hour later. It was very bizarre to me, very different from France.


In other news my scans and tests came back clean, so I am still NED: no evidence of disease, also known as remission.

Chag Pesach Sameach!

Or Happy holiday of Passover!

Pesach is the time when we remember the exodus from Egypt, you know "we were slaves to Pharaoh in Egypt... and we built cities for him, Pithom and Ramses... then God with a mighty hand and an outstretched arm freed us from bondage..." Including appearances by Moses, the parting of the Red Sea, and the 10 Plagues.

Pesach is also famous because we eat matzah, which is a very dry cracker without much flavor. You aren't supposed to eat leavened bread, and the rabbis took it even farther (like they always do!) by prohibiting beans, corn, and rice. That's only for the Ashkenazi, the Jews from northern Europe. The Sephardim, who come from southern Europe, North Africa, and the Middle East, and probably the Indian Jews too, get to eat rice because it's such an important staple of their diet. My dad always says that one of us kids has to marry Sephardic.

So the poor Ashkenazi suffer through a week of matzah, maztah meal, and whatever you can do to make them palatable. The answer is basically just eat a lot of meat, because dairy dishes are where you miss the real food options the most. I never feel that we suffer from bad food during the week of Pesach. And you'd be amazed at how good the candy they make for the holiday is.

We also change over all of our dishes because the ones we use from day to day are "contaminated" by chametz (leavened bread). I think that part is kind of fun. Don't get me wrong, it's a huge pain to switch over everything in your kitchen for just one week, but it makes everything seem new and clean and special.

Pesach is mostly defined by the Seder that we have on the first two nights. You have a bunch of people over, you tell the story of the exodus (which I have pretty much memorized over the past 25 years and have reproduced sections of it for you above), you sing songs, and you eat a huge festive meal. Jewish holidays tend to revolve around eating. That's my kind of holiday!

Happy Passover, Happy Easter, Happy whatever you celebrate at this time of year.

P.S. I have also added a button to receive new posts by email, after a certain mountain goat (to be specific, an ibex) requested it. It's on the right by the followers area.

Title-less

The bad news I received a few days ago was really, really bad news. I've been in a funk about it ever since. I learned that two of my leukemia and transplant buddies relapsed. One had just had his first transplant and still has a lot of options open to him. The other one, my terrific two time transplant twin, relapsed and has elected to receive palliative chemotherapy. Meaning that she is no longer seeking a curative treatment, that the chemo she is receiving now is just to make her comfortable, and that she is going to die.

I am completely heart broken.

I could try to convince her to continue to look for other opinions, other options, that she can't just give up, but that would be wrong for several reasons. First of all because it isn't necessarily realistic, and second of all and most importantly, because it is her choice and I have to accept that.

When someone is dying, it isn't about you, it's about the person who is dying. This is the time to stop being selfish and self-centered and think about them. Do whatever you can to make it easier for them.

When my first cancer friend, Chris, got really sick and it should have been obvious to me that she was dying, I couldn't accept it because I cared so much about her. I couldn't bear to think of her dying. But by being unable to accept it, I think I made her own dealing with her impending death harder for her and I really regret that. When Sean, Tali, and Steve died it was more sudden and shocking; I didn't have a chance to get used to the idea. I knew they were sick, but their health deteriorated so quickly that I didn't find out how bad it was until they were already gone.

I am closer to J and T than I have ever been to any other cancer friends and it hurts so much more to know that they have more bad times ahead. With J, he still has more time and options, even though I know how shitty the chemo and second transplants are. They suck.

But with T... I just can't even begin to imagine a time when she won't be in my life. It makes my heart hurt to think about it. At least I know that I will be a better friend to her than I was to Chris. I accept her decision, I know how important it is to spend as much time together as possible, to enjoy whatever time is left and not take one second for granted. I'm going to do whatever I can to make this easier for her.

It just hurts so much.

J and T, if you read this, I love you both.

Not much envie to write a detailed post. I've been taking full advantage of my freedom by going out to eat several times and shopping a bit. Tonight I went back to my French conversation group for the first time since before my transplant. It was good to be back and speaking in French. I was kind of tired from being out all day and very much out of practice speaking French so after about an hour and a half I started forgetting words and mangling my sentence structures. It will get better with more practice.

Thursday and Friday I have a bunch of tests - pulmonary function, EKG, echocardiogram, CT scan, bone marrow biopsy, and lumbar puncture. I was supposed to have a PET scan as well but my insurance has denied it and we're in the appeal process. Supposedly they will almost certainly say yes, it's usually something about the disease code or some silly bureaucratic garbage like that.

I had some really bad news from two friends today. Makes all of this being able to go out and do things seem terribly artificial. I would trade it and so much more in a second for them to not have to deal with this.

It's here!

First of all, thanks for the lovely comments on my last post. They were much appreciated.

Many new things this week!

1.) I'M OFF STEROIDS. I'll probably still have the sleeping and crazy emotional side effects for another couple of weeks, but then those will be gone and my chipmunk cheeks and water retention will go away within a month. Yay!

2.) Since getting off of steroids, my glucose levels seem to have stabilized and I think I'm pretty much done with insulin and carb counting. Yay!

3.) Day 100 is tomorrow!

So what's the plan for the big day? I will start out at the hospital with a blood draw and probable platelet transfusion. Then I'm going out to lunch with my mom. Then... ? I have several things I want to do. I want to get a big, sugary, fatty coffee from Starbucks, buy some fabric for more headscarves, and go shopping. Maybe get a super sugary frosted donut or a cupcake. And of course enjoy the beautiful weather! It's been in the 60s and sunny almost all week.

P.S. I have added a followers tab to the right. Please make me feel like I have friends by signing up to follow my blog :) I also added a subscription tab. I have no idea if it will be useful to anyone, but if you would like to subscribe using some kind of online reader, it's there for you.

Appearances

My hair started growing back last week. It comes in like peach fuzz at first, so right now I have some peach fuzz on some parts of my head. It will probably be another two or three months before I have enough hair to stop wearing a scarf. It's taking a lot longer to come back than usual, probably due to one of the chemo drugs that I got before my transplant.

One of the harder parts of having cancer are the changes it brings to your appearance. Not only are you dehumanized by all of the tests, exams, blood draws, your life reduced to a series of numbers on a page, but your appearance changes so much that when you look in the mirror you no longer recognize yourself. Yes, the hair on your head falls out, but a little known fact is that ALL of you hair falls out. It's pretty awesome to not have to shave for months, but not having any eyelashes or eyebrows makes you look like a lab rat. Chemotherapy can cause changes in your skin, either darker hyperpigmented portions or red rashes. GVHD causes the same skin changes. You lose and gain weight depending on your treatments. Some treatments even make your face break out. Steroids (yes, I am going to complain about steroids again) make you gain water weight and they redistribute the fat in your body, so you get a big belly, your collarbones disappear, and you get a huge moon face. You get scars from central lines and surgeries. You can feel as though you have completely lost the person you were before you got sick.

The first time my hair fell out from chemo I was so upset. I had cut it short in a kind of Beatles-esque style because I had been told that it's less messy. It starts with just a few extra hairs coming out in the shower for a few days, and then it starts coming out in clumps. I didn't realize that there were that many hairs on a head. I used to stand over the garbage can at night before bed, shaking out the hundreds of loose hairs and sobbing. I covered the mirror in my hospital room because I didn't want to look at myself. My nurse would tell me that it would grow back, trying to comfort me, but at the time it just made me angry because what good does that do me now? I want my hair now, I don't want to wait all those months for it to grow back!

Eventually though I realized that she was right - hair grows back. If I had to loose my hair for a few months in order to get better again, that was fine with me. And then I stopped worrying about it. It's just hair. Even though it was still hard to see all the commercials on TV for shampoo or hair dye, or to see all the ads in the magazines, or all the page space magazines devote to "Hot hair for the holiday season!" or "Best haircut for your face shape!" or "Quick and easy ways to get fabulous hair!" You never realize how many of these things there are until you don't have any hair to do anything with.

Baldness is easier to deal with because my dad has been bald for as long as I can remember and he's very funny about it, it doesn't bother him at all. I never felt compelled to buy a wig. They seem like a lot of work, and I hear they are itchy. Besides, you can always tell it's a wig (or maybe I just hang out with cancer patients too much). I just wear hats and scarves. It's kind of fun, another way to accessorize your outfit. Good thing I wear so many boring, solid colored shirts because that means I can wear fun, patterned scarves! The worst part isn't the baldness, it's after the hair has grown back enough to take off the headscarf. You still have to wait a long time before your hair gets back to the length it once was, and in the meantime you have some really vicious looking hairstyles. The growing out phase is really, really awkward.

The second time my hair fell out, a year later, I was totally over it. I knew my hair was going to fall out, I had already accepted that fact, and I just wanted it over with. My Marine friend came to the hospital to give me the official armed forces buzz cut. Even though I had cut my long hair short the first time, it was still long enough that it was a pain in the butt - hair all over my room, and it actually hurts when your hair comes out, your scalp gets really sore. I figured shorter must be better. And it was, it was so much easier because there was less mess and fuss about the whole hair falling out thing. Between that round of chemo and my first transplant my hair had grown back really short and butch, so I didn't have to do anything to cut it the third time I was bald.

The fourth time my hair fell out, starting in October when I was getting chemo, I decided that I wanted to keep and enjoy my hair as long as possible because it would be a good two years before it would grow back to the length it was (seriously, two years). It eventually got pretty thin so I wore it up in a ponytail all the time to cover up the bald spots. Then during my transplant when what was left started falling out I took a pair of scissors and hacked off the ponytail, then cut the rest as short as possible. This is probably my favorite way that I got rid of my hair because it was very empowering. I did it exactly as I wanted - I kept my hair as long as I could, and when I was done with it I hacked it off. Quick, painless, and I was totally in charge. Screw you chemo, I run this show.

I have a few friends who for whatever reason think that I should be dating, not necessarily right now but sooner rather than later. I usually try to stop them with a joke about having to find guys with a bald fetish if I want to date anyone. I mean really, the way I look right now, no way I could ever get a date. I have a big red flag that screams "CANCER!!!" flying over my bald head. I have this hairless, wide-eyed alien look without eyelashes and eyebrows. My cheeks are chipmunk-y from the steroids (not quite up to moon face status). No guy would touch me with a ten foot pole, no matter how many things we had in common or how funny and charming I was when we met. He would be totally blocked from thinking of me as anything because of my appearance.

But isn't that what we all want? Someone who will love us no matter what, no matter how ugly we are, because they care more about what's on the inside than on the outside? We are all searching for, and we all deserve, someone who cares more about what kind of person we are than what color hair we have, someone who cares more about what we have in common than about how much time we spend in the hospital, or even better, someone who makes time spent in the hospital something we have in common. Someone who will wipe away the vomit and sit in the waiting room with you for two hours because they love you and the person you are. Not someone who is put off by the ugliness and the baldness, not someone who doesn't want to hear about the bad times you've had, not someone who is only interested because they like your appearance. And ladies and gentlemen, we all know there are lots of people out there who are more interested in looks than in personality. Don't tell me you haven't met at least one person like this.

Unfortunately, it's pretty unrealistic to think that people don't take appearance into account at all when thinking about dating someone. No one can completely divorce mental attraction from physical attraction, it always plays in at least a little bit.

I can't see many people thinking I seem like an interesting person and wanting to get to know me, in any capacity, because of the way I look. In a few days I'll be at Day 100 and I will be able to go out and do things and make friends and meet people. But will they want to meet me? I feel like I would just scare them. I've never met people while still in treatment or still bald. I'm kind of nervous about how people will react to me.

The Reason

Note: this post deals with a philosophy that many people hold very dear. I don't mean to offend anyone, I am simply explaining my own take on the randomness of life. Everyone is entitled to their own opinion, so feel free to disagree.

I was tidying up my room the other day, letting my mind wander to things that I might do or might happen to me in the future when I can get out and do things, and I found myself slipping into what used to be a familiar image. You see, when I think about "destiny" or things that are "meant to be" in my life I always associate them with this image of two comets colliding in outer space (yeah, I'm weird like that). The idea is that the paths these two objects take lead to their inevitable collision, like a person and the path set out for them in life. The word "destiny" even popped into my head. And then I immediately stopped that line of thought.

You know this is bullshit, I said to myself.

"Everything happens for a reason" and "destiny" are lies that we tell ourselves to try to make sense out of a very confusing world, to help us when we are hurting emotionally or down on our luck. It makes us feel better to think that there was a reason these terrible things happened. The idea that life is random and that sometimes bad things just happen is scary. We prefer to think that there is some kind of grand plan, that God or The Universe or whatever deity or power you happen to believe in is looking out for you and plotting the course that your life will take. Even if this higher power doesn't influence every small action that each person takes, we like to think that the big things are planned out, destined, foreordained.

This is, quite frankly, a load of crap.

Let me illustrate my point with a few examples. A few years ago a mother and her two children were killed in the middle of the day by a drunk driver, leaving a grieving father behind. More recently a house burned down, killing three children. The mother had gone out with her sister to get a space heater because their heat had been turned off, leaving her seven children alone. According to the "destiny" theory those poor, innocent children were always marked for termination by the higher being. What possible reason could there be for that? What purpose does that serve? What about my friends - Tali, Steve, Sean, Chris, Ayanna - who died of cancer? Why did they get cancer? Why did they get cancers that killed them? Why did I have four friends relapse last year? What reason is there for the suffering, both physical and mental, that they, all of them, have had to endure time and time again? What about construction workers killed in work accidents, or a woman whose husband leaves her for his secretary after 30 years of marriage?

There is no reason. These things just happen, and they suck. There is no divine plan behind it. God is not poking His or Her finger in our lives, dictating who will be hit by a bus so that they can meet the love of their life in the hospital, or who will lose their job as a factory worker and later find fulfillment as a gardener. The events in our lives do not happen in order to bring about something better. They just happen.

I used to be a card-carrying member of the "everything happens for a reason" camp. Even when I got cancer I could find reasons why it had happened, that the path my life was taking post-cancer would eventually lead me to a better life than I would have had without cancer. It is true that I have met amazing people because of cancer and that I probably wouldn't have lived in France for two years had I never been sick, but I did not get cancer in order to meet them and end up in France for two years. Those are the ways I made lemonade out of lemons; they are results entirely of my own making. There is a scientific explanation for why I got cancer that involves random genetic mutations and the like, but no grand cosmic plan that required me to get cancer in order to lead me to my destiny. There is never a reason for suffering.

The only "reason" for any of the bad things that happen to us in life - illness, heartbreak, loss of a loved one, loss of a home - is the reason we give to it. We can try to make the best of a bad situation, as I did by making friends within the cancer community, and we can use these events to change ourselves and our lives. THAT is what gives meaning to tragedy, THAT is what gives a reason to these events. Rather than think that this bad event happened in order for you to find your destiny, go out and find it on your own! Don't just wallow and trust in fate to show you the way. Be proactive in making a reason for what has happened to you!

The best example of this philosophy are Sean's parents. Sean passed away a few years ago after battling cancer for seven years. I can't even imagine how painful it must be to lose a child. But his parents took their grief and turned it into good, setting up a foundation to research treatments for Ewing's Sarcoma. The foundation also sponsors many programs for teenagers and young adults at the hospital where he was treated.

I have resolved to live for the ones who are no longer here. There is nothing fair about the fact that they are dead and I am not. I am not better or nicer, I don't have more people who love me or who are praying for me. It could just as easily be me. So I try to live for them, too. If I have a difficult decision to make I often think of what they would do. The answer is almost always "go for it! Take every opportunity you can to be happy and experience life!" This may make me seem a little crazy to some, but I believe very strongly in this principle, for everyone. I also know that whatever I end up doing as a career it has to be something that directly helps others. I have been given a gift of a third chance at life, and I have to prove that I deserve it. I cannot waste my life doing something that has no impact on anyone; I feel obligated to work for others. That's part of the reason why I liked teaching so much. I could see every day that I was making a difference in the lives of those kids.

That is my reason. I try to help people and live life to the fullest so that they didn't die for nothing and to prove that I am worthy of the fact that I'm still here. Of course the fact that I'm still here is random, too. The good things are just as random and inexplicable as the bad.

I find the idea of a God who creates good destinies for some people and unhappy destinies for others to be wrong and nauseating. How horrible and unfair that would be! Especially when the destiny is not at all connected to the goodness or badness of the person (I think we can all agree the world would be a better place if Hitler had died of cancer at 22 instead of my friend Steve). Because I believe in a kind and caring God I have to reject this idea of "reasons" and "destiny."

The imagery of the two comets on a collision course is perhaps not entirely wrong. Perhaps my new paradigm should be two space ships, dodging comets and asteroids, constantly self-correcting, eventually colliding through their efforts to not crash into Pluto. Totally random, totally by chance, completely unforseen, occuring because of other decisions they made independently.

This is not meant to be a negative post. I'm just explaining a bit of my own philosophy and how I live with all the tragedies that constantly surround me. I'm looking forward to reading your comments.

I love the internet, and for shut ins it's a wonderful window to the outside world. You can watch TV shows, youtube, read the paper, shop, email, everything. Without the internet I would have a much harder time following post-transplant infection minimization rules. Then there are the social networking sites, like Facebook and Twitter, where I can keep up on what people I know are doing and let them know what I am doing.

Except that I am doing nothing, and they always have something interesting to share. I am always acutely aware of what "normal" people are doing and what I am missing out on.

It's strange to watch life around you continue while yours is on pause. I know that all of my friends are going out to bars, museums, concerts, working, volunteering, doing normal things that normal people do. They get to see each other and have fun and meet new people. I hear about it and think about how I used to do that and wouldn't it be fun to do it again? It's a sort of weird state of limbo and disconnect from the "real" world. I know that whatever life I'm living right now is "real," but it's so uninteresting. There's no excitement, very little variety, and I have very little face to face contact with anyone who is not a member of my immediate family. I may as well have moved to the moon.

Yes, I know that my 100 days of prison are up in less than two weeks. I'm not here to complain or look for comfort, but merely to share what it is like to be cut off from the "normal" life of a "normal" 25 year old. Please do not leave comments about being almost done because it will irritate me. That isn't the point. I know I'm almost done, believe me!

The irony is that I have so much passion for life and for living it because I've been fighting the cancer beast for the past five and a half years. There are so many places I want to go and things I want to see and do. I'm alive and I should be living, not stuck in my house! Sometimes I think I'm going to burst because I want so much to go out and experience everything. But even after my 100 days are up I can't be on a plane until a year has passed since my transplant because of the infection risk, and I can't go crazy doing things just around town for the same reason. I still have to be careful. Shouldn't I be using this time to do all the things I ever wanted? I've missed out on so many things already because I've spent so much of the past five and a half years in and out of the hospital, recovering from chemo and transplants, and I'm tired of missing out on life. I'm so glad that I had the opportunity to run off to France for two years and travel around Europe and become fluent in another language but it's made me want to do even more. I can't even put into words how much I want to go out and experience things. It's like there's a firecracker inside my chest that is ready to explode from all the wanting and wishing and hoping.

It's also hard to think about my friends having fun without me. Of course they should have fun and go out, and I don't begrudge them that at all, but I'm so jealous that they get to do things that I can't participate in. I want to do all the things they are doing with them! I wish I were with them, I wish I could see them, I wish we could go out together. That's something that won't change at 100 days for me and my friends in Boston and France.

It's also hard not to feel a little invisible when you don't see people. Even if I know it isn't true, and I have wonderful friends who have made a point of keeping in close contact with me, emails and the phone aren't the same as being able to sit down and have real face to face contact with someone. Then there are the friends who don't make a point of checking in on me. I know they are busy with work or school, but they are also busy being able to go out and have fun and do "normal" things that "normal" 25 year olds do, and just can't seem to find the time to leave a comment here, or a quick email, or even a short phone call. Which makes me feel even better about not being able to go out and do anything.

On the list so far for my first days of freedom: restaurants, French conversation group, maybe a matinee, and shopping!

More commercials

Michigan will be electing a new governor this fall and Rick Snyder has already started advertising to get people familiar with his name because he's not a politician or someone that people have heard of. He's a successful business man and he's trying to appeal to people as a guy who knows business and can help turn around our economy, which, quite frankly, sucks. He doesn't have a ton of information on his website yet but a lot of his principles sound good.

One big tick against him: he's running as a Republican. We know what that usually means: cut taxes, cut government services, run up the deficit.

One big tick for him? He's running a campaign based on being a nerd. I love it! I love the idea of someone selling the fact that they are intelligent and did well in school, rather than just appealing to fears and prejudices and so-called "values" issues.

I'm definitely interested, but we'll see if he ends up being someone I can vote for. So far he doesn't seem so bad. He even wants to increase Medicaid reimbursements. The Democrats, of course, are in near complete disarray. *sigh*

Don't you love these commercials?

Some commercials I like

I spent a lot of time watching the Olympics and saw a lot of commercials. Here are some funny ones that I really like.

Napkins, napkins!



Anaesthesia?



I think this one is adorable, and it makes my mom cry