Hello again. Exciting news! Since I last posted, my white blood cell count tripled, and then tripled again! So I now have an ANC of 540, which means I'm no longer neutropenic (barely)! Have I explained neutropenia before? It's when your white blood cell count (specifically your neutrophil count) is below 500, leaving you extremely vulnerable to infection. Now that my ANC (absolute neutrophil count) is over 500 (as I said, barely), I'm less vulnerable to infection. For a comprehensive - and hilarious - explanation of the whole ANC thing, see Saif's comment on the previous blog posting.
So, Dieter (see Saif's comment) is growing up quite nicely so far. With the help of some more GCSF, he should be churning out a few thousand more neutrophils within the next week or so. The doctors here will be happy when my ANC is above 5000. One doctor explained to me today that they like to see my counts above 1000 for at least 3 days, and then above 5000. Once I reach that point, I can stop giving myself the daily GCSF shots, which will be nice.
My friend David (who lives in Cambridge, MA) visited me in the hospital today with his mom, who is my mom's best friend. After visiting, they went over to my house to assemble an Ikea dresser I had bought, but not gotten around to assembling. Can you imagine a nicer thing to do for someone?? I mean, Ikea's assembly instructions are often enough to make one not just pull one's hair out, but possibly scream a string of swear words that can only be found in the Urban Dictionary. Apparently, it's going well. Anyway, thank you so much, David and Betsy, for your help.
I have friends coming tonight, too, and maybe we'll play some taboo and go on a walk or something. It'll be fun. :-)
Hope you're all well!
Friday, January 29, 2010
Wednesday, January 27, 2010
A post without a story
Hi, friends! I'm sorry I haven't posted anything in a few days. I had this silly idea that to write something, and to let you all know how I'm doing, something interesting had to have happened. But maybe it's interesting that nothing interesting has happened in the last few days. After all, the doctors do say that usually in the oncology clinic, interesting isn't good. Maybe each post doesn't have to tell some exciting story. What do you think?
Let's give it a shot. So, as all of the above implies, nothing particularly interesting has happened! I have had some wonderful visitors, and that is always really fun for me, but maybe not as interesting for you. I don't know - you tell me. I do feel like I'm getting stronger every day. I did my usual walk this evening with my friend Kristina, but with two additional laps! I even walked at a pretty good clip...not speed-walking or anything, but faster and with more stability than before. We also watched the State of the Union address, which I thought was wonderful. I really loved what Obama had to say about just putting the pettiness and partisanship aside and getting the job done.
In other news, there was a blip on the radar today in terms of the lookout for my impending immune system. I think I have about 40 neutrophils per some measurement of cells. I'm not really sure how they calculate it, but they always refer to this "absolute neutrophil count," or ANC, to determine the strength of my immune system. Just to give you an idea, I think a normal ANC is around 5000. Saif, any bits of wisdom you can add here? In any case, I'm still giving myself 2 shots per day of a medicine called GCSF to boost my white blood cell count. Hopefully it'll start kicking in soon, and I'll suddenly have some semblance of an immune system!
I'm still on track to go home mid-next week. Keep your fingers crossed for me!
Let's give it a shot. So, as all of the above implies, nothing particularly interesting has happened! I have had some wonderful visitors, and that is always really fun for me, but maybe not as interesting for you. I don't know - you tell me. I do feel like I'm getting stronger every day. I did my usual walk this evening with my friend Kristina, but with two additional laps! I even walked at a pretty good clip...not speed-walking or anything, but faster and with more stability than before. We also watched the State of the Union address, which I thought was wonderful. I really loved what Obama had to say about just putting the pettiness and partisanship aside and getting the job done.
In other news, there was a blip on the radar today in terms of the lookout for my impending immune system. I think I have about 40 neutrophils per some measurement of cells. I'm not really sure how they calculate it, but they always refer to this "absolute neutrophil count," or ANC, to determine the strength of my immune system. Just to give you an idea, I think a normal ANC is around 5000. Saif, any bits of wisdom you can add here? In any case, I'm still giving myself 2 shots per day of a medicine called GCSF to boost my white blood cell count. Hopefully it'll start kicking in soon, and I'll suddenly have some semblance of an immune system!
I'm still on track to go home mid-next week. Keep your fingers crossed for me!
Sunday, January 24, 2010
Another day of friends and eating!
Today has been a great day.
First of all, I am most happy to report that, for a second day in a row, I have not puked and I ate real(ish) food! Applesauce...check! Canned pears...check! Bring on the bacon cheeseburger! Or, maybe I'll wait a while for that one, but you get the idea. Maybe I'll try macaroni and cheese next, light on the cheese.
In other news, I had lots of visitors today! Aside from my wonderful mom, who sits here with me tirelessly every day, three other groups of people came. First my friends Tracy and Wendi from Team in Training at the Leukemia and Lymphoma Society came. Just a few minutes later, my friend Rebecca arrived. She is one of the mentors from the triathlon team for which I am an honored patient, and she brought with her a huge bag of goodies from the team! What wonderful people they are. And Team in Training (TNT) is such a great way to get in shape and do something good for yourself with a whole lot of support behind you, while also doing something good for people like me. Check it out.
Anyway, then, my friend Kelly came and she, Rebecca, and I went on my daily walk. My walk consists of taking a lap around each oval-shaped level of the building, from 7 down to 3, finally ending up back at my room. Like I said before, it gets my lungs pumping, my legs moving, and I like to think it puts some color back in my face.
Finally, in the evening, my good friends Florencia and Brian came, and they brought Taboo! So the three of us sat and played for a few hours, even though the game requires 4 players. Florencia was our double-teamer, and it worked out just fine! In fact, it was a lot of fun. I always love seeing them.
All in all, it's been a great day of friends and real food. I'm looking forward to more days like this very soon.
First of all, I am most happy to report that, for a second day in a row, I have not puked and I ate real(ish) food! Applesauce...check! Canned pears...check! Bring on the bacon cheeseburger! Or, maybe I'll wait a while for that one, but you get the idea. Maybe I'll try macaroni and cheese next, light on the cheese.
In other news, I had lots of visitors today! Aside from my wonderful mom, who sits here with me tirelessly every day, three other groups of people came. First my friends Tracy and Wendi from Team in Training at the Leukemia and Lymphoma Society came. Just a few minutes later, my friend Rebecca arrived. She is one of the mentors from the triathlon team for which I am an honored patient, and she brought with her a huge bag of goodies from the team! What wonderful people they are. And Team in Training (TNT) is such a great way to get in shape and do something good for yourself with a whole lot of support behind you, while also doing something good for people like me. Check it out.
Anyway, then, my friend Kelly came and she, Rebecca, and I went on my daily walk. My walk consists of taking a lap around each oval-shaped level of the building, from 7 down to 3, finally ending up back at my room. Like I said before, it gets my lungs pumping, my legs moving, and I like to think it puts some color back in my face.
Finally, in the evening, my good friends Florencia and Brian came, and they brought Taboo! So the three of us sat and played for a few hours, even though the game requires 4 players. Florencia was our double-teamer, and it worked out just fine! In fact, it was a lot of fun. I always love seeing them.
All in all, it's been a great day of friends and real food. I'm looking forward to more days like this very soon.
Saturday, January 23, 2010
A pretty good day
I actually don't have that much to talk about today. But I think that's a good thing. Excitement in a hospital is generally not a good thing, unless of course, it's about babies or other generally happy things. But for the transplant unit, today was a fairly good, not overly exciting day.
It certainly had some fun parts, but not many un-fun parts. For example, I did not throw up today. At all. Not once. AND I even ate real food, if you can count apple sauce and canned pears as real food. Right now, I'm considering them food, because they're about the only "solid" thing I can stomach. I also went on a nice, long walk. I got the lungs workin and the legs movin, and it felt pretty good!
Also, I had some lovely visitors! My friend Sarah came and chatted for a couple hours. I've decided I'm going with her to Honduras in July. Then, later, family friends Betsy and Arthur stopped by for a bit. It's always nice to see them.
Now, I'm waching reruns of House (one of my favorite shows) and settling in for a good night's sleep!
Love to all.
It certainly had some fun parts, but not many un-fun parts. For example, I did not throw up today. At all. Not once. AND I even ate real food, if you can count apple sauce and canned pears as real food. Right now, I'm considering them food, because they're about the only "solid" thing I can stomach. I also went on a nice, long walk. I got the lungs workin and the legs movin, and it felt pretty good!
Also, I had some lovely visitors! My friend Sarah came and chatted for a couple hours. I've decided I'm going with her to Honduras in July. Then, later, family friends Betsy and Arthur stopped by for a bit. It's always nice to see them.
Now, I'm waching reruns of House (one of my favorite shows) and settling in for a good night's sleep!
Love to all.
Friday, January 22, 2010
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.
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.
Wednesday, January 20, 2010
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.
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.
Monday, January 18, 2010
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. :-)
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. :-)
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