I wish my life were more "normal"

In about ten days it will be six months since my transplant, and it's been about eight months since I found out I relapsed. Eight months since I put my life on hold, again, for the third time. The third time I've had to withdraw from classes, the third time my plans have been moved from the "in progress" box to the "indefinitely suspended" box. The third time I've found myself with nothing meaningful to fill my days - no work, no school, just medical stuff. Otherwise my time is mine and I can choose between internet, books, movies, TV, and the Wii for diversion.

Last time around I got completely stir crazy six months after my transplant and this time around it's the same thing. I'm ready for a change. This is why I don't really mind going to the hospital nearly every day of the week - it gives me something to do! People to interact with! A place to go!

I wish I were living the life of a "normal" almost 26 year old. Over the past six years the only time I felt somewhat "normal" was for a few months about five years ago, before I relapsed for the first time and had my first transplant, and the period from about two years ago until I relapsed in the fall. What do I mean by "normal?" Mostly not having my life be consumed by health issues all the time. Being able to go out and do things - grocery shopping, the post office, restaurants, which I can do now but since I'm not living on my own I don't have to. But mostly I mean the things that people in their 20s do - work, go to school, go out to bars, meet people, make friends, date, travel, have fun!

This is not to say that I've been miserable for the past six years. Obviously not. In fact I've made opportunities for myself that most people never have the balls to pursue, like living in France for two years. I just wish that my time in France didn't feel like an anomaly, like I had a break of two years bookended by years of treatment and hospitals and doctors. I feel so old. While most people my age only worry about what bar to go to this weekend and how to pick up a guy or girl, I worry about my blood tests and chemotherapy sessions and if I should make a living will or not (the answer is yes but I honestly don't know what I want to put in it. To be like Terri Schiavo or not?).

I just wish I could be more like everyone else. I would like my life to be less serious. It would be such a luxury to worry about homework or boy drama instead of my pulmonary function or getting rid of the leukemia in my CNS. To go out every night instead of spending every day at the hospital.

Someday?

Appreciation

This week was an ECP week, so I spent the afternoon yesterday and today in the four chair ECP room getting treatment. Sitting across from me yesterday was a man who was so terribly emaciated and weak that he couldn't even get into and out of his chair by himself, someone had to lift him. Today a young woman sat across from me, a lung transplant recipient whose body had recently begun to reject her lungs. She's also on the list for a kidney transplant and may eventually have to get another lung transplant if they can't control the rejection reaction. She goes back and forth between three different hospitals in two states, is on a long list of medications, and did I mention she also has steroid-induced diabetes?

This afternoon I was angry. I wasn't angry at the other patients, I was angry at the majority of people in the world. You know, the ones who complain about everything - work, sleep patterns, internet problems, etc. The people who in all seriousness think their lives suck. We all know them, we all put up with their whining, we all nod along sympathetically as they continue to list the minor problems that make their life one big FML every single day. I looked at these poor people in front of me and was angry at the people in the world who live great lives and still think they have problems. Seriously? Seriously? Let's see, life threatening illness and the daily issues caused by it versus having homework or annoying coworkers or noisy neighbors. I wonder which one I would choose? People like that should get down on their knees five times a day and thank whatever power they believe in that they have their health, that their lives aren't like these people I met in ECP. Or like mine, for that matter. It makes me furious. It makes me furious that there are so many people who can't put things in perspective, shut their mouths, and be grateful for what they have. Do they really think their life is that hard? They should try spending one day like the lung transplant patient and then see how terrible their life looks. Why do we find it so hard to just appreciate what we have?

Then I calmed down, and I felt sorry for those people, those people who can't put their lives into perspective. I feel sorry for them because they will always be unhappy, because they can't see how good they have it. They look around them and all they see is the next thing that can go wrong, the next thing to complain about. They have no appreciation for life and so cannot fully live their lives the way someone who knows how precious every day is can live their life. They don't know how to take advantage of every good moment and appreciate how good life can be.

My friend T, Theresa, is dying of leukemia, as I shared with you a few weeks ago. This past weekend she posted a really beautiful guest blog post here. Theresa is the kind of friend everyone should have. Not only is she amazingly thoughtful, caring, beautiful and kind, but speaking with her makes me want to be a better person, and her words inspire me to be better. The world will be a little less bright when she is no longer in it. I hope that you will find the same inspiration in her words and life as I do.

Off the top of my head

- had some friends from college visit this weekend. It was very nice to see them, but they definitely tired me out! We were always out and walking around and doing stuff. It was good to see that I've regained strength and can do these things without wanting to fall over, but by the time they left last night I was ready to veg.

- still processing the Lost series finale and deciding what I thought about it. Yes, I am a Lost fan. True to form the show of course left more questions than it answered, so many plotlines were just left hanging without any explanation, but a lot of elements of the ending were very satisfying. I like that they didn't force an "everything happens for a reason" type of ending on us, that would have ticked me off. We make our own reasons.

- over the course of the past few months I've realized that at least four people have defriended me on facebook. I don't really care, because none of them were ever close friends or anyone I am currently in touch with, but it kind of bothers me that they went through the trouble of deciding to remove me from their friend list. Do they have something against me or am I just too boring to stalk on facebook? I mean really, why would you go to the trouble of unfriending someone who is just sort of benignly on your friend list?

- we finally have sun! And now it's too hot! Just can't win when it comes to the weather.

To Life

I had all of these ideas for posts in my head the past few days but didn't have time to write about them and now I've forgotten all of them! Let's see if I can remember some...

First good news is that it's finally sunny again here. The weather doesn't really get me down, but I do get tired of gray and rainy for weeks on end. The sun just brightens everything!

After my first transplant I didn't get readmitted to the hospital. Period. The first time I was readmitted in almost four years post first transplant was this past fall when I had gall stones and we found out that I had relapsed. That is basically unheard of for bone marrow transplant patients. Everyone gets readmitted for something. This time I'm less than six months out and already have two non-serious, short readmissions under my belt. What's the difference? Well, the first time around for the first year after transplant I literally only left my house to go to the doctor and take walks outside. Only a few visitors, no stores, no restaurants, no nothing. I had a different doctor and was at a different cancer center, and he had very strict rules and scared me into submission. At the time I really thought that it was better to be bored OUT OF MY MIND for a year than to risk an infection that could kill me. This time around, I know how miserable that kind of life is and refuse to do that to myself again.

The medical details were different too; I was still on fair amount of immunosuppressants at this time four years ago (actually didn't get off of them until I relapsed) and already after this transplant I'm off all immunosuppressive medication. Your immune system works better when you aren't layering medications on top to stop it from working. Amazing, huh? Also the philosophy at my current hospital and of my current care team is very different. They really encouraged me to go out and do things once I was post day 100. I think a lot of that is because I'm being seen in pediatric care now (young adults still count as peds for transplant at this center) and of course it would be completely impossible to keep young children inside for a year. In general the pediatric view of care, from what I've encountered, takes quality of life into account much more than the adult teams do for many different aspects of care. They realize that it's good for the spirit to be out and about, as long as you're being careful and not doing anything too crazy. For the amount I've been doing, it's pretty amazing that I haven't been back in the hospital more often. I've been going to trivia night at a bar since they went smoke free on May 1st, I've been going out to a cafe for my French conversation group nearly every week, last night I was out at a fundraising event for a local cancer support community, I'm seeing friends, going shopping, going to restaurants... it's amazing compared to the first time around! And my spirit is noticeably better. I remember four years ago after my first transplant around this time I was miserably bored and trying to force myself to be content with the life I had. I felt so uncertain about my future and could barely think ahead a few days because I was so focused on my health, living by my blood counts, hoping to dodge the next bullet. I couldn't envision anything interesting ever happening to me again. It was a long, boring, uneventful life lived three or four days at a time. On good days, maybe a week at a time. I was trying to just be content with what I had, which was uneventful nothingness and being unable to imagine a different future. I felt dead on the inside.

And now I'm out, I'm doing things, I'm seeing people, I have plans, and I enjoy thinking long into the future and thinking about things I might plan for the future. Of course I have good days and bad days, but I'm so much happier in general than I was four years ago at this time. And on the bad days I can go buy myself something to improve my mood.

I discovered towards the end of my year of enforced solitude that in order to feel alive, to feel as though all this shitty treatment I've been through was worth it, I have to feel emotions and I have to be a part of life. I'm sure some people look at me and think I'm a little extreme and crazy in my absolute passion to live and do things and be part of life, but that's how I'm happy. I am not happy giving up things and renouncing life and trying to be content with what I have. I always want more, I always want to go somewhere new, do something new, feel more, experience more. That is what life is all about! Life is meant to be lived, not merely existed, miserably trodding through like a drudge.

So I dream ahead. I make plans and alternate plans and alternate alternate plans. I think far in advance - to the end of the month, to the summer, to the fall, to possibly applying to go back to France again, to maybe enrolling in school, to places I want to travel, to trips I will take. I may not be able to do these things yet, but someday I'll be free again, and I want to be prepared. In the meantime, it makes me happy to plan and imagine a better future.

So to close today, some quotes:

"Feel, feel I say - feel for all you're worth, and even if it half kills you, for that is the only way to live, especially to live at this terrible pressure, and the only way to honour and celebrate these admirable beings who are our pride and our inspiration." In letters to friends, again and again he urges them to feel. Feeling would stir up empathy and would remind them that life was worth living.

"Live all you can; it's a mistake not to. It doesn't so much matter what you do in particular so long as you have your life. If you haven't had that what have you had?"

Both from Reading Lolita in Tehran by Azar Nafisi

And finally, my favorite quote:

"But I can't give up wishing," said Philip, impatiently. "It seems to me we can never give up longing and wishing while we are thoroughly alive. There are certain things we feel to be beautiful and good, and we must hunger after them. How can we ever be satisfied without them until our feelings are deadened?"
George Eliot, The Mill on the Floss


P.S. I might be a little crazy, but I like my crazy.

Sprung!

Luckily I didn't have any positive cultures, my symptoms were clearly cold-like, I didn't run any more fevers, and my doctor saw reason and let me out this morning about 12 hours shy of the full 72 hours. I'm back at home. Let's hope I don't have to go back again, even though I like visiting with everyone up there. Hopefully the weather will be nice tomorrow so that I can enjoy being out!

I just watched a fabulous movie tonight, Penelope. It's a really adorable story about a girl born to very wealthy family, but because of a curse put on her family, she is born with a pig nose and ears. To hide their shame, her family has kept her locked away in the house her whole life. In order to break the curse, she has to marry someone from another wealthy family. It's a very nice movie, beautifully filmed, with a great message about loving and accepting yourself despite any perceived flaws. I really related to the character of Penelope. I highly recommend it. Anyone else seen it?

Jinx!

.... and then I ran a fever and bought myself three days in the hospital!

Last night I started running a fever. The rule post-transplant is if you run a fever of 100.5 or higher you will get admitted to start administering IV antibiotics and whatever else. The danger is that the brand new immune system may be too weak to fight off an infection so they want to jump on any problems right away. So I spent the entire night in the ER - sorry, emergency department - finally got a room on the transplant floor at 6 AM, slept for a few hours, and am just hanging out here getting IV antibiotics. Of course I'm not running fevers anymore, and my symptoms are all consistent with a simple cold. But the rules are you have to stay in the hospital until you've had negative cultures for 72 hours and no fever for 24, so I may end up spending my weekend here. I say may because they are hard up for rooms right now and it doesn't make much sense to waste a room on someone with a cold, especially because I live very close to the hospital and can easily come back if my fevers return. We'll see.

I definitely jinxed myself though because I came up to the floor to visit the nurses last week, and here I am, back as an impatient, able to visit with them as much as I want!

Finally, some good news!

I was scheduled to have more intrathecal chemotherapy (chemo injected into the spinal fluid) on Monday, but my doctor decided to hold off on the chemo and just check the spinal fluid for leukemia. Chemo lowers my white blood cell count, and he doesn't want me to run super low counts, so he was hoping we'd be able to hold chemo for another week if the spinal fluid came back clear. Otherwise I would have gotten more chemo later this week.

Good news: only 1 white blood cell per mm3, and none of them were leukemia cells!

Chemo is rescheduled for next Monday now. Why do I have such annoying cancer? Seriously, it keeps coming back to bite me, but then it dies off quickly. The dying off quickly is good, but can't they just stay away in the first place?

It turned out to be a good thing that I had so many problems with my platelets for so many months. The reason I had a lumbar puncture when I did, at the end of April, rather than the end of March, like I was supposed to, is that my platelets were low and they had trouble getting any fluid out. When I finally had the LP in April, we caught the leukemia really, really early when there were very few cells around. In March they likely wouldn't have seen anything, and I wouldn't have been scheduled for another LP until June at my six month post transplant check up, by which time I would have been FOL - full of leukemia.

I am a lucky girl.

My Mom

Mother's Day calls for a special post about my mom. My mom and I have a great relationship. I know that I can tell her anything and she'll always listen and give good advice without judging, she has always been there for me, and although it was very hard for her while I lived in France for two years, she never complained and supported me when I went back for a second year.

My mom is a remarkable woman. She struggled against a lot of sexist attitudes in her desire to be a scientist and has been remarkably successful. She kept her maiden name despite societal pressure to change it and has always been very strong her feminist viewpoint. She has fought tooth and nail for all of her kids to succeed in whatever they wanted to do.

All of this would be amazing in anyone, and then you add on top of that the fact that for the past six years one of her children has been fighting a life threatening illness, and she becomes even more amazing. When I was first diagnosed she stayed in the hospital with me every night during my month-long hospital stay. She moved across the country with me to get my first transplant, living apart from my dad for four months, and somehow their marriage is stronger than ever today. Because I have near constant immune problems she has changed the way she cooks and cleans just for me, just to keep me safe. She goes to all of my appointments and procedures and always asks good questions to make sure everything is working the way it is supposed to. And did I mention that the type of research she does is on cancer, and types of drugs she works with (nucleoside analogs) are the drugs they use for my type of leukemia? I can't imagine what a nightmare it must be to know exactly what can go wrong with your kid, but my mom believes that knowledge is power and that makes her the most powerful mom in the cancer center.

I love my mom, and I can never show her enough how much she means to me and how much I look up to her and hope to be just like her someday.

Some pictures

I finally uploaded some old pictures from my camera, and was surprised to find some remnants of winter!

This is from my front porch, looking to the tiny park across the street. You can just barely make out the bench:


This is looking across the street the other way:


Yes, we get a lot of snow in Michigan. This was nothing.

Right after these flashback pictures were the pictures I took a couple of weeks ago when the leaves first started to come out and the flowering trees were in bloom.

This is the park across the street - what a difference a couple of months make!


I love flowering trees




In France I would complain sometimes about the fact that there aren't enough trees. You can see why from these pictures. I'm lucky enough to live in a neighborhood and city where there are lots of big, mature trees all over.




Now it's even more green and beautiful because we've had so much rain in the past couple of weeks. And yes, it's raining again today. We need it for the crops, but I really wish we could have more than just a few days without rain!

Connection

I'm fully off of twitter now, and I am really happy. The only reason I got involved in the first place is my friend J was using it to update about his transplant last year, and since I was out of the country and dealing with the time change, I needed to be able to check in on him. A lot of people I know in France were on twitter too, so it was fun to see what people were up to. I quickly got tired of it, however, because it's a suck pit of nothingness. Quite honestly, I don't need to know what you are doing every second of your life. Sure, sometimes someone posts something that is actually worthwhile to read about, but most of it is how frustrating work is, getting a coffee, trying to sleep or unable to sleep, being tired, or other similarly meaningless things.

I was thinking yesterday about this culture of up to the second updates we have created. As my mom has always said, we all love to talk about ourselves. We love sharing everything that is going on in our lives, no matter how trivial, and sites like twitter and facebook make it easy to share with the entire world. Someone out there is going to read your constant updates. Someone out there cares.

The reason the Amish are against technology is that it separates people. The internet is a perfect example of that. You never, ever have to leave your house in some areas. You can order anything you want online, work from home online, watch TV online, and even interact with people online through sites like twitter and facebook.

It's incredibly ironic that we are increasingly isolated by the internet, and yet we use it to connect to people. Yet most people don't use it to make real connections - we connect through surface level sites like twitter that allow us to see what coffee shop you're working at, or through facebook which shows us what your cause of the month is. There's nothing substantive at work through sites like this, and yet they are among the most popular sites out there.

On the other hand, you can use the internet for meaningful interactions. Blogging being a perfect example, naturally :) All kidding aside, many people meet through blogs, dating websites, social networking sites for diseases. If you're looking to make a real connection with someone on the internet, you can do that too.

I know so many lonely expats who have been helped by "knowing" other bloggers, being able to commiserate about the common problems of moving abroad, and I know how helpful Planet Cancer is to isolated young adults with cancer searching to connect to someone who can relate to having to move back in with your parents after living independently for years or trying to figure out balancing class schedules with chemo schedules. The internet can be amazingly meaningful for those feeling lost and alone.

And then there is twitter, which I would argue is used as a way to connect and cure loneliness and isolation. You may feel more connected by being able to tell everyone about the fact that you overslept or have to get a root canal. But are you really connecting, or just creating the illusion of connection? Will anyone register that you have been there and contributed, or are you just putting another lonely blip onto the internet?

Everything's coming up stinky

I had a great weekend. Wonderful to see my friend, so nice to just relax and feel like I was in college again. Nothing like seeing good friends to put you in a good mood.

Nothing else is going well.

I had a lumbar puncture (spinal tap) a couple of weeks ago that showed a few leukemia cells in the spinal fluid. At the time I really didn't see it as a big deal - literally they found seven cells, and though it technically counts as a relapse, I was already slated to get more chemotherapy as part of my maintenance plan to prevent another relapse, so I just saw it as more of the same with a variation. The treatment for CNS (central nervous system) disease is chemotherapy injected directly into the spinal fluid, which sounds really creepy and does freak me out a little, but with some good sedative drugs isn't terribly anxiety inducing. You can get headaches from it but luckily I didn't. I had some low grade nausea and was a little tired but that was it. I'll get that twice a month for a certain period and eventually go down to once a month with treatment to continue for a year.

We decided to move ahead with my maintenance chemo, which is this drug called Vidaza that also has very minimal side effects. I get it for a week once a month. It's a short infusion and I will spend more time waiting around to get it at the outpatient infusion clinic then actually sitting in the chair getting the drug. That's nice. I started that yesterday, and I feel fine.

Fast forward to this morning when I got a call from my nurse at clinic. I had a bone marrow biopsy last Friday because with the relapse they have to check everywhere the disease could be hiding now to see if it's coming back. Remember, I haven't had any disease in my marrow (the main spot where leukemia likes to live) since before my first transplant four and a half years ago. There are no signs in my peripheral blood counts that there's disease in my marrow.

Biopsy came back inconclusive. There are some abnormal cells, not enough to qualify as a relapse, but too many for it to be clean.

I don't even know how to react to this.

I'm really upset. I feel like the walls are closing in on me. Granted, I will probably feel better about this in a few days when I get my fighting face back on and put things in perspective - not a full out relapse, I'm getting chemotherapy, I know my doctor is fighting for me and doing everything he can.

But is it going to be enough? Or is this just the beginning of more bad news?

I really hate it when the reality of my situation breaks through. I hate writing negative posts, I hate feeling negative about things, I hate not being cheerful, I hate feeling this vulnerable and putting it out for the entire world to read about. But I also hate lying, and I would be lying if I tried to pretend that I wasn't having a bad couple of weeks.

For now, I'm going to go take a walk outside in the sun to a cafe, get a smoothie, and then head over to the hospital for a blood draw, infusion, and to see my nurse.