My cup runneth over

Wow, guys. I don't know what to say. In the midst of transplant crap, vomiting, headaches, lack of sleep, you all have brought me to a level of happiness, love, and humility that I have never felt before. You have shown such an outpouring of love, caring and concern, and humor in the face of not-so humorous things. I am confident in confirming, once again, that I have THE BEST friends and family anyone could ever ask for. Thank you.

If you're curious about what brought on such a feeling in me, I'll tell you a few stories. Over the past few days, some friends have come to visit and have been happy to just sit and keep me company - no entertainment required. I did provide minor entertainment in the form of Uno, but it was obvious that they did not come over simply to play Uno. One friend, who feels like family, brought me a beautiful, cheery poster to brighten the walls of my otherwise drab room. And she brought dinner for my mom (her favorite sandwich noless), which I thought was just delightfully generous and selfless. My aunt did a cute thing too - she knows I can't have live flowers in my room, so she sent beautiful virtual ones, along with her love.

Then, today, an envelope arrived addressed to a good friend of mine c/o me at my address. I was confused at first, needless to say. Then, I opened it, and tears welled up in my eyes. He had sent me two silver bracelets from the Maureen's Hope Foundation - one that says, "Moving Forward Looking Up," and another that says, "Expect Miracles." The story that accompanied them explained that while the Foundation's honoree fought cancer "her bracelet became a symbol of normalcy and represented the fun spirited person she was." My bracelets will not only remind me of the strong, fun-loving person I am, but also of the wonderful friends I have rooting for me. Thank you.

Then, if you can believe it, there was more. My friend Kristina showed up to visit today at the most inopportune time and stayed. I had just gotten a tickle in my throat that caused a coughing fit, which in turn caused some mild tachycardia, and simply caused me to get pretty freaked out. When she walked in I was still coughing and trying to catch my breath. Just the fact that she stayed makes my heart feel full. But she didn't just stay. She knows that I love flowers, and knows from recent experience that I can't have real flowers in my room, so she brought me pictures of beautiful flowers (pictures that are actually cards), with the most loving and supportive things written inside. And then, she stayed more and we played Uno.

And I'm even expecting more loving things in the near future. My friend Sarah is coming tomorrow, Florencia and Brian are coming one night this weekend, and get this - my friend David is flying down from Boston to visit me and help my parents finish getting my room ready for my return home. And on top of all that, my friend Nate is also flying down from Boston sometime soon to pay me a visit.

I have a wall of love now, in my no-longer-drab room. It has things all over it that remind me of the things and people I love. And I sure do have a lot of people to love.

T-Day (+ 1)

Well, folks, I'm the proud owner of a brand spankin' new immune system. It's new to me, anyway. It's been tried and proven effective over a 49-yr trial period with a man. (Men are dirtier than women, so you know that's a legitimate test.) He's never had any health problems, so I am looking forward to experiencing the benefits of this excellent immune system.

Some of you may be wondering how this whole "transplant" thing works. When I first heard about the ominous transplant , I thought I would be sliced in half lengthwise to have my bone marrow scooped out, and then be smushed back together again after squirting the new bone marrow in. I envisioned the bone marrow having the consistency of peanut butter. In a word, No. I was waaaaay off base. It's actually very anticlimactic, although I felt more emotional about the whole thing yesterday than I expected I would.

My friend Jon was here to witness it, although I don't think those were his intentions when he chose yesterday to visit. My mom, of course, was here, too. We were all crowded around my little tube, watching the cells move around. I was pretty amazed at the ease of the procedure. Literally, I lay there with a bag of pinkish/yellowish cells hanging at my side, waiting for them to make their way through the tube and into my body. There was no funny sensation once they entered, and I don't feel any different today than I did yesterday. But I am different. I have a new set of cells inside me that will soon make up an immune system that will protect me from illness in ways mine couldn't. (That's the part where I got emotional. I'm just so looking forward to putting cancer behind me.) I'm also a B+ blood type now, instead of an A+ (no big deal).

To celebrate my rebirthday, as they call it, the nurses surprised me with a cake and some candy. Unfortunately, I still can't keep food down, so we put the cake in the freezer to enjoy it another time. It was a nice gesture. So, now you all know, my official rebirthday is January 19th, 2010, at approximately 9:45 pm. I excpect cakes and presents from here on out.

After the procedure was finished, Jon and I played Go Fish, but pretended we were members of the Russian mafia. "You don't 'chave a seben forr me??" "No, I don't 'chave the sebens. GO to the fishes." You know, like, go to the mattresses, from The Godfather? Go to the fishes?

Anyway.

Today was pretty uneventful. I was really tired, so I slept most of the day. In the evening, my friend Florencia came and we went on a little walking adventure to find a vending machine. Then, while I got an infusion of platelets (my level was 12, when it should be at least 50) we played Uno, a game which I have not played since I was a little kid. It's a fun game! I think I will add this Uno to my game repertoire for future use.

I'm sitting here now contemplating going to sleep, while getting a couple units of red blood cells. When your red blood cells get low, you can get very lethargic (which is probably why I was so tired earlier today).

Oh - big news. I ate a whole 2 saltine crackers and haven't puked them up yet. Here's hoping for less puking in the coming days!

Oh, AND, a few posts ago, I credited my friend Mari with sending me this wonderful box full of books and games and puzzles. Turns out it was a group effort, organized by Mari, but with contributions from MANY of my friends at Yale and a couple from DC. You all know who you are - thank you.

Also, I realize many of you are sending me emails, and I do appreciate them very much. Please understand, though, that it might take me a while to get back to you because I have to work on blogging and email replying at times when I'm feeling well enough to do either (which isn't particularly predictable). Just know that I love getting your emails, and please do not be offended if it takes me forever to reply.

May I reuse a blog title? If so, OOF.

If not, then the name of this blog post would be "Vomit," and I'm not sure how much you all would have appreciated that. So, it's probably best that we stick with Oof.

The last two days have been a blur. I woke up the day before yesterday vomiting, and the following days have continued as such, with the exception of a few hours of drug-induced sleep, woven in between fits of nausea. Sorry - not so interesting. I hope you didn't read this right before dinner. Perhaps I should have prefaced this with another warning?

All of this nausea/stomach-upset-stuff can be blamed on cytoxan. I found this out as I leaned over the side of my bed and puked all over the floor, only moments before my doctor poked his head in the room. "I guess this is a bad time," he said, under his face mask. I adore this man, and I haven't seen him since before I was admitted last week, so I was eager to talk to him about the week's events. He'd been staying away (and still donned the face mask) because he'd been flighting the flu. "Sorry," I said, "I just threw up on the floor." He assured me that I did not need to apologize, and that this could be expected from cytoxan. Apparently, this drug likes to trick its subjects by saving its nausea-inducing side effects for the very end and springing them on its unsuspecting patients on the last day of its infusion. Patients can then expect to experience general miserableness for the next 24 to 48 hours.

I, fortunately, am at the 36-48 hour mark of this miserableness, and can feel it slowly subsiding. Up until a few minutes ago, I had not eaten or had anything to drink for about 2 days. Who knew a person could go that long? A few minutes ago, I tried to eat some cherry-flavored jell-o. Not only was it lacking in the delightfully jiggly-yet-firm constisitency that comes with the stuff in the real Jell-o tubs, but also it was mushy, kinda falling apart, and altogether not up to my jell-o standards. Instead, I ate a whole italian ice bar, which was lemon flavored, and quite refreshing, actually. So far, it's still in my stomach. Here's hoping it stays there.

Tomorrow is the big day, you know - transplant day. Or, as I will henceforth refer to it: T-day. In preparation for T-day, I'm getting a daily dose of cyclosporin, an immune suppressant to keep my body's immune system (what little of it remains) from attacking my shiny new one when it arrives tomorrow.

In the mean time, I'm watching the Food Network (as usual), reading all your emails you so kindly continue to send, and maybe taking some walks around the area to keep everything moving the way it should.

Hope you're all having more exciting, less pukey days. :-)

Hello again.

WARNING: The author of this post is under the influence of lorazepam, and can barely read the words on the screen. She therefore shall not be held accountable for any nonsensical sentences, misspellings, misplaced modifiers, run-on sentences, or any other offenses to the institution of the written word that may appear in this post. Editorial discretion is advised.

Sorry about flaking on my posting obligations yesterday. I was feeling pretty cruddy, and figured you all would understand if I missed a day. I'm still not entirely sure what was making me feel so bad, but I got so anxious and yet so tired at the same time, I didn't know what to do with myself. I couldn't sit still, but all I wanted to do was go to sleep. It went on like that all day. I tried walking around, sitting in a chair, lying down, but nothing worked to calm me down. I'm usually a pretty laid back person, so in my personal opinion, we can blame this on the anti-emetic (aka anti-nausea drug) they gave me, called Reglan, which can sometimes cause anxiety-like symptoms. After I stopped taking that and got some of the good drugs to calm me down, I was able to fall asleep for most of the night. I awoke in the early morning with a fever, but the doctors and nurses think that's likely still attributable to the Campath. By the way, tonight will be my LAST dose of Campath! Good riddance to bad rubbish, I say. Also, tomorrow is the last day I'll be getting the chemotherapies I've been on all week. I think my body will be very happy not to have all that stuff being pumped into it anymore.

I am feeling ok right now - much better than yesterday. The fact that I can even sit down and write this tells me I'm better than I was. But I have been just bursting into tears for no apparent reason. I think I'm just a little overwhelmed with all the new stuff going on. This blog is sort of therapeutic for me, I'm finding.

This afternoon, someone came in from the recreational therapy department. They offer reiki, massage, pet therapy, arts and crafts activities, and lots more to try to make the patient's stay here a little easier. The therapy dogs are coming on Tuesday, so I'm looking forward to that. I might try this reiki thing, too, although I'm still not 100% clear on what it is or how it works. But I hear it's great. Have any of you tried it?

The end of the day was full of nice surprises! I was walking out my door to go for a walk and escape the inpatient unit for a little while, and my friend Kristina was at the door! She joined my mom and me for a walk and we sat in a pretty part of the building with lots of windows to just relax for a while. She brought me the most beautiful flowers! Unfortunately, I can't keep them in my room, so she is going to take care of them for me until I get out of here and can take them home. She took pictures of them for me with my BlackBerry so that I can look at them even though they're not here.

She also brought my favorite lip balm (yay Burt's Bees!), and a hand sanitizer spray that doesn't smell like "hospital." I also received two boxes of wonderful books from my friend Mari! I'm very excited about my reading list ahead of me! Thank you SO much, Mari and Kristina!

My friend Florencia is coming to visit tonight, as well, and is going to bring real food! Now I just have to decide what my (currently) sensitive stomach can handle.

Did I mention that I have the best friends in the world? Ever. Ever Ever.

Take THAT, Campath!

Well, yesterday turned out better than I expected! I thought the side effects caused by my nemesis...er...Campath would taper off slowly over the week. But I was pleasantly surprised yesterday night when, after both doses of it had finished, I had not experienced any of the side effects that I had the night before! (Except a little fever, but I'm not counting that.) I'd like to give my body a pat on the back for adjusting so quickly and not causing any more trouble yesterday! Can we get a round of applause?

Thank you, thank you!

Ahem, erm...moving on...

After Christina and I had dinner and she left for the evening, I watched the season premiere of American Idol. The terrible singers on that show never cease to amuse me. It's definitely not quality television, but hey, it's entertaining! I slept through the night without any interruptions, which was really nice. I do miss my lovely bed at home, and my sweet kitty Cali (see below), who has apparently been sleeping on my bed in my absence. But in the hospital, a full night's sleep is not to be taken for granted!


What a face, right!? Love her. So anyway, after a good sleep, a nurse woke me up to deliver breakfast. And by breakfast, I mean this:


I know what you're thinking. "Yum! Why can't someone deliver a breakfast like that to me every morning?" What's that? You don't want to swallow pills the size of bricks? Fair enough. Those pills are all for prevention of possible infections. There's bactrim in there, to prevent pneumonia, fluconazole to prevent fungal infections in the lungs, acyclovir to prevent herpes (ew...), and a couple others I don't remember off hand. I gulped all of those down and have just been hanging out since then. I don't have much going on today, other than starting chemotherapy (cytoxan and fludarabine, with some mesna to protect my bladder from damage from the cytoxan). I'm a little tired, and am starting to feel the "chemo brain" coming on, but other than that I'm alright. I plan to have a quiet evening, with the exception of the screeching coming from the mouths of the (in)eligible American Idol contestants.

Oh, also, someone said something really nice to me today. The social worker, whose name happens to be the same as mine, said with a smile, "You're really going to bring some life to this place." I was touched, and I hope she's right.

Oof. What a night.

Well, the first night proved to be more interesting than I expected! Here's a painting I saw at the MoMA in New York City last year that does a pretty good job of summing up the last 24 hours.



OOF. (Yes, that's a real painting. I don't remember who the artist is.) That Campath stuff I talked about really messed with me. (For my fellow science geeks: click here for more information about Campath.) I was fine for most of the infusion, but then the weirdest things started to happen. Apparently everything I experienced was normal for someone receiving Campath, but they weren't normal for me, personally, so it was a little scary.

First, at around 10 pm, I started getting a fever, chills, tingling in my finger tips, and the shakes. Normally fevers are treated very seriously in oncology units, because they can be a sign of infection. So I got really scared initially. But since I was getting that Campath crap, they weren't too worried about it. Like I said, for the nurses it was normal. I got some drugs to treat the shakes and the fever, and they gave me a warm blanket to stop the chills. They took some blood samples, just to be sure that there was no infection - and there isn't one. Things started to look up after that. But then later in the night, I started getting really itchy and realized that I had hives all over me. Ugh! I got a syringe full of Benadryl, and that was that. I fell asleep for a few hours, finally. But a few hours was all I got. I woke up with a rapid heart rate in the wee hours of the morning. Campath can cause this and other heart problems, such as arrhythmia. My heart rate was above normal, but it was beating regularly (no arrhythmia), thankfully. Apparently some people have ended up in the ICU for heart and blood pressure issues while taking Campath. I have a few more days of it, but everyone says the first day is the worst, so I think things will get better. I started my next infusion of Campath moments ago, and am hoping for an easier night. The doctors and nurses check on me regularly, and have all been great.

Today I mostly just stayed in bed and rested. Last night left me pretty worn out. I'm watching the food network (my favorite) and thinking about all the things I'm going to cook when I get out of here. :-)

My friend Christina is coming to visit me tonight. She and I met at work several years ago, and have been good friends ever since. She's planning on bringing me some food from the outside world (gasp!) to have for dinner, while I can take advantage of such luxuries. And by luxuries, I mean an appetite, and being allowed to eat whatever I want...these things won't last long in here!

Hope you're all doing well. Much love.

P.S. A friend sent me this article today, and it's definitely worth a read. The author does a great job of articulating what it's like to go through some of this cancer stuff.

In it to win it!

So, I made this blog a long time ago, thinking I would use it as a sort of journal. Then, because I've never really been into keeping a journal or diary, I promptly forgot about it. But now that I'm in the hospital for my transplant, I figured this would be a good way to keep everyone updated on my progress. Feel free to read or not read, post or not post - whatever you like.

Anyway, like I said, I'm in the hospital. And I'm in it to win it! I'll be here for about a month, and hopefully, after this procedure, I'll never have to deal with stupid cancer again. Today is Day -8. We're counting up from -8 to zero; Day zero will be the day my immune system is completely demolished and I'll get the cells from my donor. I don't know who my donor is or where he is from, but I know that it's a man and he's 49 years old. It's funny to think that after I get his cells, my blood will be composed of his cells, and so if you were to do a blood test on me, it would look like I'm a man! Don't worry, I won't be growing hair on my chest!

Right now I'm sitting on my hospital bed getting my first infusion of a drug called Campath. It's not a chemotherapy; it's actually an antibody. In order to prevent a reaction (like an allergic reaction) against a foreign antibody entering the system, they pre-medicate me with benadryl and tylenol. So far, so good.

The bed here is pretty comfortable. I guess it does make a difference being in a bed that's made for adults and not just kids. My room is big and my window looks out on a pretty courtyard. I have a TV, DVD player, and phone all to myself. Obviously I also have WiFi. There's a room here that has a pool table, big screen tv, and foosball table in it, too. So if you're in the area and want to come visit, we can pretend we're in a pool hall instead of a hospital. :-)

My mom is going to be here pretty much every day, but in the evenings I have friends coming to visit (hi guys!). I have the best friends in the world. Seriously.

Anyway, that's all that's happening now...nothing too exciting. Feel free to send pictures, so I can hang them in my room and think of all of you!

I miss all of you who live far away, and am looking forward to seeing those of you who live nearby!

Much love to all.