Yes that's right, I came home today! I was a little nervous at first but I realized I just have to be careful. At the hospital, it was easy, they did all the work. Here at home, I'm the one that has to be more proactive in my health care. They gave me some face masks that I was advised to wear if I was going to be in a crowded area. Not looking forward to that but oh well. My dad bought me an air purifier/allergen remover which actually has done alot to ease my anxiety. And more than anything I'm so happy I'm not on the low bacteria diet anymore! But I'm suppose to avoid fast food which is cool.
I asked my doctor if we could push the date up for my other transplant and he said he would get back to me. I figured I feel well and I don't need a month to recover when I never really got sick. Even though I was discharged early, I'm still going to be monitored closely as an outpatient so I already have an appointment on Friday. I have a swollen lymph node on the right side of my neck, right above my clavicle, that I can feel and which the doctor uses to monitor my progress. When it doesn't feel like it's changed we can tell the treatment hasn't made an impact. Now, I don't know whether I'm imagining it or not, but it feels smaller and softer than before. It gives me so much hope. I hope I'm not imagining it.
Today I bought one of those mini file boxes, they're plastic and they look like a toolbox but you keep files in it. I have to say, organizing my paperwork was among the highlights of my day. I've been wanting to do it for weeks. I'm really organized but I used to use folders and they were getting too full and ratty and using multiple folders was getting complicated. I love knowing that all of my medical paperwork, student loan info, and past tax returns are in one place.
Say no to germs, viruses, and bacteria! And if you're sick, don't you dare come visit me!
Tuesday, August 28, 2007
Sunday, August 26, 2007
Day +10
To clarify, the day of the transplant is called Day Zero, the day after Day +1, and so on. Today is Day +10 for me.... and I've been doing really really well! Almost TOO well......
This whole time we've been waiting for my white blood count to drop and so far it hasn't. Instead my counts have stayed at normal and above normal! You'd think I'd be happy about it but it gave me a different kind of paranoia. Everyday I'd wake up thinking, "Is today the day my counts will drop and I'll get sick and feel like shit?" After 5 days of waking up feeling completely fine, I started to think maybe it hadn't worked. So for 3 days I worried that maybe the chemo and transplant hadn't worked and that my cancer was still going about its spreading business. Finally I decided to stop stressing it. I expected the worst but I got the best so I should be damned happy about it!
So basically no pain, no sickness, no mouth sores, no extreme fatigue.... no nothing. I'm like the rock star patient here, lol. So anyways, my doctor today said that I might be discharged tomorrow or Tuesday. I'm excited and worried. I'm looking forward to my freedom but I'd gotten used to the close monitoring. What if I get sick at home? What am I going to do?! This goes back to the old theme of getting used to the abnormal as normal and vice versa.
I have all of September off and then I come back in October for more chemo and another stem cell transplant. I've been warned that that one might be more difficult because I'll get 3 chemos instead of just one. I figure I coasted through this one so I can't complain about the next one. That hospital stay is suppose to be longer, like 3-5 weeks. If I get discharged Tuesday, I'll have been here exactly 2 weeks. Surprisingly, I'm not that scared of the 2nd one. A part of me wishes I could just do it sooner and get it over with.
Sometimes it feels like I'll never go back to a normal life. Granted, not my old normal (I wouldn't want it anymore), but a new normal. I realized cancer will always be in my life. I will always worry about a relapse, I'll always have to have at the very least a yearly scan, I'll always perk up at the mention of the word. It's neither a positive nor negative presence, it just is. Right now everything is still treatment. I'm waiting for the time when treatment is finished and I have the clean scans to prove it. Then I can go on with my new normal life.
On another note, the open wound from my port removal has finally completely closed. It's a little scar but it's ugly. And it's still that angry red color. I wanted to start using Mederma on it because I had really good results before but the 2 times I put it on, the area started to itch like crazy. It was so bad I had to just wash it off like 10 minutes later. I don't know why it's irritating my skin now, kinda sucks. I really don't want to not put anything on it so I'm gonna have to find something else to aid the healing process. Anyways, my chest now has 2 fairly visible scars. They are definitely not pretty or subtle. You'd think it would bother me but it doesn't. I just added them to my growing list of scars on my body.
And before I forget, I now have a new laptop! Mind you, it's just a basic laptop but I love it because it's all mine and it's perfect for my needs (downloading music, surfing the net, and word processing). I went all through college without one and we have one at home but it's the family computer, we all use it. This is like my first personal, only for me, myself, and I computer. Isn't that crazy! I'm such a dinosaur, lol. This will definitely aid me on my journey towards computer proficiency (I don't even know how to use Excel..... yet).
It's all part of my grand master plan towards self-improvement. I've also vowed to get my license in September. And this time I mean it! I have to have to have to! I swear I'll just refuse to drive for the rest of my life if I don't do it in September. Then I'll have to move to NYC where it's socially acceptable to not have a license.
So that's about it for now! We'll see how the whole moving back home thing works out. I'm such an exagerada, it's only been 2 weeks but I act like I've been living here for months. It's just so safe and secure here. My house is like one giant germ city. We just have too many pets and even though my mom is deep cleaning the house and forbidding my brothers from bringing the dogs in, I'm still worried. You have to understand, people who visit me here have to wear gloves and a face mask in my room. Once, a nurse came in and saw that my sister had taken her mask off and gave us all a big lecture about how it was for my protection so that I don't get sick. So, that's what I've gotten used to. God, and I used to love germs too!
This whole time we've been waiting for my white blood count to drop and so far it hasn't. Instead my counts have stayed at normal and above normal! You'd think I'd be happy about it but it gave me a different kind of paranoia. Everyday I'd wake up thinking, "Is today the day my counts will drop and I'll get sick and feel like shit?" After 5 days of waking up feeling completely fine, I started to think maybe it hadn't worked. So for 3 days I worried that maybe the chemo and transplant hadn't worked and that my cancer was still going about its spreading business. Finally I decided to stop stressing it. I expected the worst but I got the best so I should be damned happy about it!
So basically no pain, no sickness, no mouth sores, no extreme fatigue.... no nothing. I'm like the rock star patient here, lol. So anyways, my doctor today said that I might be discharged tomorrow or Tuesday. I'm excited and worried. I'm looking forward to my freedom but I'd gotten used to the close monitoring. What if I get sick at home? What am I going to do?! This goes back to the old theme of getting used to the abnormal as normal and vice versa.
I have all of September off and then I come back in October for more chemo and another stem cell transplant. I've been warned that that one might be more difficult because I'll get 3 chemos instead of just one. I figure I coasted through this one so I can't complain about the next one. That hospital stay is suppose to be longer, like 3-5 weeks. If I get discharged Tuesday, I'll have been here exactly 2 weeks. Surprisingly, I'm not that scared of the 2nd one. A part of me wishes I could just do it sooner and get it over with.
Sometimes it feels like I'll never go back to a normal life. Granted, not my old normal (I wouldn't want it anymore), but a new normal. I realized cancer will always be in my life. I will always worry about a relapse, I'll always have to have at the very least a yearly scan, I'll always perk up at the mention of the word. It's neither a positive nor negative presence, it just is. Right now everything is still treatment. I'm waiting for the time when treatment is finished and I have the clean scans to prove it. Then I can go on with my new normal life.
On another note, the open wound from my port removal has finally completely closed. It's a little scar but it's ugly. And it's still that angry red color. I wanted to start using Mederma on it because I had really good results before but the 2 times I put it on, the area started to itch like crazy. It was so bad I had to just wash it off like 10 minutes later. I don't know why it's irritating my skin now, kinda sucks. I really don't want to not put anything on it so I'm gonna have to find something else to aid the healing process. Anyways, my chest now has 2 fairly visible scars. They are definitely not pretty or subtle. You'd think it would bother me but it doesn't. I just added them to my growing list of scars on my body.
And before I forget, I now have a new laptop! Mind you, it's just a basic laptop but I love it because it's all mine and it's perfect for my needs (downloading music, surfing the net, and word processing). I went all through college without one and we have one at home but it's the family computer, we all use it. This is like my first personal, only for me, myself, and I computer. Isn't that crazy! I'm such a dinosaur, lol. This will definitely aid me on my journey towards computer proficiency (I don't even know how to use Excel..... yet).
It's all part of my grand master plan towards self-improvement. I've also vowed to get my license in September. And this time I mean it! I have to have to have to! I swear I'll just refuse to drive for the rest of my life if I don't do it in September. Then I'll have to move to NYC where it's socially acceptable to not have a license.
So that's about it for now! We'll see how the whole moving back home thing works out. I'm such an exagerada, it's only been 2 weeks but I act like I've been living here for months. It's just so safe and secure here. My house is like one giant germ city. We just have too many pets and even though my mom is deep cleaning the house and forbidding my brothers from bringing the dogs in, I'm still worried. You have to understand, people who visit me here have to wear gloves and a face mask in my room. Once, a nurse came in and saw that my sister had taken her mask off and gave us all a big lecture about how it was for my protection so that I don't get sick. So, that's what I've gotten used to. God, and I used to love germs too!
Sunday, August 19, 2007
Day +3
.... and I still feel fine!
My fear is that this is the calm before the storm.
Today the doctor told me that if I continue to do well I might be discharged by Labor Day. Instead of comforting me, it reminds me that I still have a ways to go. So 2 more weeks....
Sometimes I make myself laugh by singing "Eye of the Tiger" in my head and pretend punching the air. Makes me feel strong, lol.
I miss the outdoors, the fresh breeze. There's a Japanese garden on the campus and it's cool because you can buy fish food and feed the koi and the turtles in the little pond. My sister, Diego, and I would go there after my stem cell collections but the koi would annoy us because they would knock the turtles out of the way so the turtles wouldn't get any food. So the 3 of us would find ways to just feed the turtles. It was a pretty spot.
For my last birthday Danette gave a crochet kit which I still haven't used. I think I'm finally gonna use it though, lol. I just don't know what to crochet! Maybe I'll make a scarf, lol.
I guess everyday that I wake up feeling great is a great day. I hope I keep waking up that way!
My fear is that this is the calm before the storm.
Today the doctor told me that if I continue to do well I might be discharged by Labor Day. Instead of comforting me, it reminds me that I still have a ways to go. So 2 more weeks....
Sometimes I make myself laugh by singing "Eye of the Tiger" in my head and pretend punching the air. Makes me feel strong, lol.
I miss the outdoors, the fresh breeze. There's a Japanese garden on the campus and it's cool because you can buy fish food and feed the koi and the turtles in the little pond. My sister, Diego, and I would go there after my stem cell collections but the koi would annoy us because they would knock the turtles out of the way so the turtles wouldn't get any food. So the 3 of us would find ways to just feed the turtles. It was a pretty spot.
For my last birthday Danette gave a crochet kit which I still haven't used. I think I'm finally gonna use it though, lol. I just don't know what to crochet! Maybe I'll make a scarf, lol.
I guess everyday that I wake up feeling great is a great day. I hope I keep waking up that way!
Thursday, August 16, 2007
Day Zero
So how cool is this? I'm blogging from my hospital bed at City of Hope Hospital in Duarte, CA.
And yup, today was Day Zero! I got my stem cells back today.
So much has happened since I last wrote. Basically the fevers stuck around for 10 days and then they mysteriously left. They took out my port but neglected to tell me they left the wound open because they thought it was infected so imagine my surprise the day after when a nurse changes the dressing and I've got a gaping wound in my chest. It has since healed and there's a slightly ugly scar left but I've discovered the powers of Mederma (scar cream) so I'll be using it on the scar. Then I did my last round of salvage chemo. Then I had a Hickman catheter put in, which is the type of catheter they need for the transplant. Then they collected my stem cells for 8 days and finally I checked into the hospital this last Tuesday.
Yesterday, Wednesday, they gave me that high dose chemo (which I slept through). And today they gave me half of the stem cells that they collected. It turns out I'll be doing this transplant 2 times. This being the first one and then I come back the beginning of October for transplant #2. This time I'll be in the hospital for 2-3 weeks and the second time for 3-5 weeks. And then hopefully not at all! So basically I'm here so that they can keep an eye on me to make sure I don't get too sick. I feel fine now but they said it'll change in a few days so we'll see.
My room is pretty sweet. I'm definitely hooked up in the entertainment material. I have my ipod, portable DVD player, a stack of magazines, a trashy novel, a nice TV in the room, and for now my sister's computer with internet access. They even have a low impact exercise class for patients that are well enough to take it. And my siblings come visit with boardgames that we all definitely get into. So all in all, it's not so bad. All of these things do a great job of distracting me from the stuff that's going on around me.
I'm slowly getting there. I'm in the middle of this transplant and then it's just one more.
One gross detail. So the preservative they use on my stem cells smells like garlic creamed corn! And when they were giving them back to me, I could taste it in my mouth....... it was absolutely awful, thank God it only lasted like half an hour. So yeah, garlic creamed corn, just thought I'd share that.........
On another note, my brother Sergio got a motorcycle like a month ago and today was in a motorcycle accident. I haven't seen him but my mom assures me he's ok, just scraped up. It was a little crazy, I was in my hospital and then my mom calls to tell my sister and I that she's across town in another one with my brother. My poor parents.....
My sister came home from Seattle and she has totally been everywhere with me. I've missed her laughter and witty humor. She leaves next Monday and........ I'll miss her terribly.
Today I spoke to 2 friends of mine from Ithaca, Angie and Christina. They told me they were going to Las Vegas next year sometime between January and April. If I can be well enough to go........ I almost can't wait! I've missed them alot. They remind of wine-filled Ithaca summer nights.
So I really want to clean up my credit. Today I opened a savings account over the phone and actually put money in it. I'm intimidated by the task but I really really want to do it. I wish I knew who to call for help with something like this. I looked on the internet but there is so much stuff and apparently some of those companies aren't legit so I'm pretty much on my own. I guess first step is getting copies of my 3 credit reports and going from there.
I decided that after all this cancer business is over, I need to change my life. Be more proactive, more independent, more responsible. It's not that I was unhappy, I just wasn't satisfied.
It's weird because I look out the window (I have a view of the freeway) and I see all these twinkling lights, of cars and homes, and imagine all those people living their lives, with all the love, sorrow, anger, and joy that comes with living. And here I am, here we are, in this hospital, living ours the best way we can. And I look around the room that is mine for the next two weeks and I wonder what I'll go through here. And I think of others who have lain on this bed and been grossed out by the garlic creamed corn smell. I think of my poor brother at home, laying in bed all scraped up and probably in a lot of pain. I wonder what he's thinking right now.
And yup, today was Day Zero! I got my stem cells back today.
So much has happened since I last wrote. Basically the fevers stuck around for 10 days and then they mysteriously left. They took out my port but neglected to tell me they left the wound open because they thought it was infected so imagine my surprise the day after when a nurse changes the dressing and I've got a gaping wound in my chest. It has since healed and there's a slightly ugly scar left but I've discovered the powers of Mederma (scar cream) so I'll be using it on the scar. Then I did my last round of salvage chemo. Then I had a Hickman catheter put in, which is the type of catheter they need for the transplant. Then they collected my stem cells for 8 days and finally I checked into the hospital this last Tuesday.
Yesterday, Wednesday, they gave me that high dose chemo (which I slept through). And today they gave me half of the stem cells that they collected. It turns out I'll be doing this transplant 2 times. This being the first one and then I come back the beginning of October for transplant #2. This time I'll be in the hospital for 2-3 weeks and the second time for 3-5 weeks. And then hopefully not at all! So basically I'm here so that they can keep an eye on me to make sure I don't get too sick. I feel fine now but they said it'll change in a few days so we'll see.
My room is pretty sweet. I'm definitely hooked up in the entertainment material. I have my ipod, portable DVD player, a stack of magazines, a trashy novel, a nice TV in the room, and for now my sister's computer with internet access. They even have a low impact exercise class for patients that are well enough to take it. And my siblings come visit with boardgames that we all definitely get into. So all in all, it's not so bad. All of these things do a great job of distracting me from the stuff that's going on around me.
I'm slowly getting there. I'm in the middle of this transplant and then it's just one more.
One gross detail. So the preservative they use on my stem cells smells like garlic creamed corn! And when they were giving them back to me, I could taste it in my mouth....... it was absolutely awful, thank God it only lasted like half an hour. So yeah, garlic creamed corn, just thought I'd share that.........
On another note, my brother Sergio got a motorcycle like a month ago and today was in a motorcycle accident. I haven't seen him but my mom assures me he's ok, just scraped up. It was a little crazy, I was in my hospital and then my mom calls to tell my sister and I that she's across town in another one with my brother. My poor parents.....
My sister came home from Seattle and she has totally been everywhere with me. I've missed her laughter and witty humor. She leaves next Monday and........ I'll miss her terribly.
Today I spoke to 2 friends of mine from Ithaca, Angie and Christina. They told me they were going to Las Vegas next year sometime between January and April. If I can be well enough to go........ I almost can't wait! I've missed them alot. They remind of wine-filled Ithaca summer nights.
So I really want to clean up my credit. Today I opened a savings account over the phone and actually put money in it. I'm intimidated by the task but I really really want to do it. I wish I knew who to call for help with something like this. I looked on the internet but there is so much stuff and apparently some of those companies aren't legit so I'm pretty much on my own. I guess first step is getting copies of my 3 credit reports and going from there.
I decided that after all this cancer business is over, I need to change my life. Be more proactive, more independent, more responsible. It's not that I was unhappy, I just wasn't satisfied.
It's weird because I look out the window (I have a view of the freeway) and I see all these twinkling lights, of cars and homes, and imagine all those people living their lives, with all the love, sorrow, anger, and joy that comes with living. And here I am, here we are, in this hospital, living ours the best way we can. And I look around the room that is mine for the next two weeks and I wonder what I'll go through here. And I think of others who have lain on this bed and been grossed out by the garlic creamed corn smell. I think of my poor brother at home, laying in bed all scraped up and probably in a lot of pain. I wonder what he's thinking right now.
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