Alright, So Maybe Today Wasn't So Bad

I can't wait until I'm told that, at least for the moment, I am Hodgkin's-free. Today I had my weekly check up and my doctor told me that I wouldn't have to come back for another two weeks, at which point he'll order a PET and CT scan. I just can't wait! I know this sounds crazy, but I've always trusted my cancer instinct. Every time I had a scan, although I talked about how positive I was, I never admitted that I didn't think the results would be good. I know people say, oh stay positive, think positive thoughts, mind over matter, if you don't really believe it, it won't happen. I wanted to believe that I would get better earlier. I prayed for the miracles, and I don't pray. But I would get this gut feeling that, no, things were not getting better. This is the first time that I've felt, yes maybe it's gone. Maybe I don't have to do this anymore. Maybe in a year things will be very different. The thing that hurts me is that, I wonder, what if I'm wrong? What if I'm just getting my hopes up for nothing? I'd just like to get good news for once, concrete good news, not just, you LOOK great, you have such a great attitude. Blah, blah, blah...........

Today I didn't feel so well. I just didn't eat alot, today or yesterday. I want to eat, but food still grosses me out. And if I just make myself eat something I don't really want to, it just comes back up. It's just depressing me. I'm trying, I wish my body would try harder.

I decided I've had enough. I've started petting my cat again. I tried with gloves but she wasn't having it. So I just put on a mask, scratch her, and then run to wash my arms thoroughly. I don't care. But I have a feeling my mom, my doctor, and Clay won't like it.

Well Clay's birthday is coming up in 2 weeks. If he didn't read my blog I could talk about what I'm getting him. It's the 12th of November, a Monday. That weekend before, we're going up to San Francisco to watch the USC vs Cal game with his sister and his parents, who are flying out from Virginia. I was nervous at first but now I'm looking forward to it. It'll be nice to get out of LA for a few days.

So I've been bald since the beginning of July. I have a wig but I hate using it. When I had some hair, I didn't mind putting it on, but now that I'm bald, I hate wearing it. I guess it makes me feel as if I'm hiding something. I don't want to hide the fact that I have cancer. It's not something that embarrasses me or that I'm ashamed of. Not having hair is the least of my worries. I feel like this is how I am now. It's not how I'm always going to be, but it is what it is now. Wearing a wig will not make me feel better or fix anything. And this isn't me letting cancer define me. I have cancer and cancer treatment made my hair fall out. And that's it. I'm not going to hide it. Now, this isn't a critique of women who choose to wear the wigs and the hats and the scarves. This is why I don't, but if women want to wear wigs to help them feel better about their image, then they should be supported, I understand why. It's not like I haven't felt robbed of my femininity, my privacy, my "beauty." But you need to do what makes you feel best about yourself. For me, that's going bald.

Now, lol, after having said all this, my bald head is getting cold! So, I may have to purchase a hat or two, maybe even a scarf......... Strictly for heating purposes, I swear!!! Don't judge me!

So this evening my friend Erasto gave Diego and I a ride to Target so that we could look for Diego's costume for tomorrow. Since he's going to be in a mini play in his Religion class, he's dressing up as Jacob. As in Jacob from the Old Testament who has like 10 kids with 4 women (2 sisters and each respective sister's slave)..... that slut............ Anyways (Diego had me read the passage he was in and then I got caught up in the story), tell me how creative we had to get to make a male biblical costume. So, 2 bathrobes, the first one worn backward and tied with a piece of rope (we cut up one of those drawstring backpacks), then the second one over it like a coat (a la Joseph's technicolor dreamcoat), then a shawl over the top robe, and finally brown leather flip flops (borrowed from Erasto). I have to say, it looked pretty good.

So my dad did the candy shopping and he bought cheap nasty candy! I'm talking about 2 bags of cinnamon hard candy. He did buy 2 small bags of the type of candy you fill pinatas with (tootsie rolls, doctor's office lollipops, Dubble Bubble gum, Sweet Tarts, Smarties...... you get the picture) but it'll only be enough if only a few kids come. Or if I only give out 1 small piece per person. I hope I don't have a candy fiasco!!! I might have to go to the store and buy more........... Oh and he bought me a lavender witch's hat that was covered in silver fringe. Of course it's awful but I didn't want to hurt his feelings so guess what I'm wearing tomorrow??? I'll make sure I wear lavender eyeshadow to match...........

She's Back!

So after moping around for 2 hours after posting my last entry, Diego decided to check under the house again. There's a tile we can remove in the bathroom so Diego lifted it up and put more food in her food dish. Since we suspected she was under there, we had put it there and filled it with food every night, but the problem is that other cats also roam around and under our house (because we keep feeding them, we're suckers), so we didn't know if it was her or them. Anyways, Diego barely finished putting the food when the cat showed up right away! Isn't that a coincidence? I only wrote about how she was gone a few hours ago and now she's back. I gave her a stern lecture about going out of the house. Tomorrow I'm gonna figure out all the possible ways she can get out of the house and block them. This was stressful!

Please Come Home

Halloween is almost here! I can't remember if the kids in my neighborhood trick or treat around here so I don't know if I should buy candy to give out. I don't want to be that house that doesn't give out candy. I'll just buy it, my brothers will eat it if I don't give it all away.

I remember the last Halloween party I went to, I dressed up as a trailer trashy housewife, lol. That was 2 years ago. I can't wait until I can dress up and go out for Halloween again.

So on Friday I went to City of Hope for a check up and when my dad and I were walking back to the car, this lady came up to me and said, "A year ago when I was where you are, someone in the parking lot hugged me and told me that in a year, everything would be much better. So don't think I'm weird, I just want to tell you the same thing. It will get better!" And then she hugged me! But before I could even say anything, she immediately walked away really quickly. It happened so fast, lol. I now call it, the Hug & Run, because she hugged me and ran. Weird but nice?

Well, it's time that I came clean about something I've been hiding. It started a few months ago, during my first transplant. I did it once and yeah I felt good but I didn't think I would do it again so soon. However, the opportunity came up again and again and I just couldn't stop myself. And I try to justify it but...... I need to finally admit that I have a problem. I am addicted. I am addicted to giving to charity. First it was $20 to St. Jude's Children's Hospital, and only because they sent me address labels and I felt bad not sending anything after they sent me something (which I use by the way). And I figured, hey it will help kids with cancer so why not? But they must have put me on some kind of list because then I got letters from an LA mission that feeds homeless people during the holidays, the World Wildlife Fund, and Habitat for Humanity. So my donations will feed 15 people Thanksgiving dinner ($24.60), 15 people Christmas dinner (another $24.60), and will provide a door for a Habitat for Humanity home ($50). I ran out of money by the time the World Wildlife Fund sent me a letter, so they got nothing :( . I know I know! Clay thinks I'm crazy to be giving when I myself receive help (I get state disability and I've gotten a grant from the Leukemia & Lymphoma Society). But I can't help it! People need to eat and live somewhere! By the way, I gave more to Habitat for Humanity because they sent me Christmas address labels. They always get me with the labels. I need help! Charities, stop sending me letters! I can't say no!

On another note, on Sunday I had breakfast with my high school Academic Decathlon coach. It was really great seeing her. She's married now with 2 kids and I'm just happy that she has her own little happy family. I always admired her and liked that she really challenged me to push myself always. We made plans again for this upcoming weekend.

My mom comes home in exactly one week! I have to say, I really missed her when she left because she did everything for me. Although my dad and my brothers have been helpful, they do not even come close to doing everything my mom did. Which means I had to do quite a few things on my own, which I didn't like at first but now realize that it's made me a little more active, which is good. I still can't wait for her to come home though.

Bad news: I think my cat ran away. Sometimes when she gets mad at us (when we try to bathe her or take her to the vet) she hides somewhere all day. So several days ago I couldn't find her and I figured maybe she was just hiding because I would put food out and hours later it would be gone. But two days later I still couldn't find her anywhere in the house. Diego thought he heard meowing under the house one night so he went under the house with a flashlight and still no cat. The problem is that if she got outside, our pit bull Snub probably scared her or chased her somewhere and now we can't find her. It's now been 4 days. I'm scared she's gone for good and I don't know what I should do. I love that damn cat and if she doesn't come back.......... I hated that I had to move her out of my room because I liked sleeping with her. I couldn't even pet her anymore. That doesn't mean I stopped loving her. I hope she's ok and that she turns up soon.............

At Least Tyra Is Still On :)

How the hell is it almost the end of October and it was in the 90s today? Tomorrow too, predicted 90 degree day.

So apparently these fires are really going at it. Earlier today my dad told me that the sky was hazy because of all the smoke from the fires. I didn't really believe him though because I thought, those fires are so far away, how are we gonna get the smoke all the way out here? But then I went outside and I realized he was right. That and the sprinkling of ashes on top of the cars made me think about what it's like for the people right next to the fires.

Today I had another check up with my doctor. I thought that I would get a PET and CT scan in a few weeks but it turns out the clinical study I'm in says it has to be 2 months after the transplant and so far it's only been one. So it won't be until near the end of November that I'll find out how effective the transplant was. I wish it was now!

So in the beginning of my cancer treatment, I didn't lose weight, I gained weight. A good 10-15 pounds. But I didn't care because I just thought, hey I have cancer, I'll eat what I want. But after this transplant and the whole not eating and no appetite drama, I've lost that weight and then some. To be honest, it would be the perfect weight here in LA, but I'm not comfortable at this weight. I'd like to gain at least 5 pounds back, that would put me back at the weight I was when I started. The nurses at the clinic gave me this look like, are you crazy, lol? It's because they told me how great I looked, how thin I was, and I was like, I'm trying to gain weight ok. Their advice: eat a baked potato with lots of sour cream and cheese, lol.

I wish just one or two channels would cover the fires instead of nearly all of them. Hello, I'm missing I love Lucy, The People's Court, and Oprah!

Who Am I? Why Am I Here?

So for awhile there, all I was reading was US Weekly and People and all I did was watch TV and follow celebrity news. So I decided that I wanted to learn more about what is going on in the world. I think I've been pretty successful in becoming more aware of what is going on in politics, although I don't think I'd really discuss it alot just because I think there is still alot I don't know. But I'm happy that I'm making the effort.

Another thing, I love history and learning about the world. When I was in school I knew so much stuff but over the years, lack of use of that knowledge has caused me to forget it. So I've also started researching things I knew about once but forgot the details of. My recent searches have been about what caused WWI & WWII, Pinochet's rise to power in Chile, and biographies of Richard Wagner, Hitler, and Nietzsche (not his work, just his life). I just feel like there is so much to know. I like learning about........ everything really, lol. So my next searches: Nelson Mandela, the Cold War, Nicaraguan history, Francisco Franco, and Coco Chanel.

I've always been really into astronomy and I think that if it didn't require so much damn physics, chemistry, math........ so much damn science(!), I would have wanted to become an astronomer. There's just something about realizing that, what is one person in the enormity that is the universe, with it's stars, planets, solar systems, galaxies, black holes, quasars, etc. I mean I sit here and think about how I'm just watching TV while somewhere out there stars are dying, planets are forming, the universe is continuing to expand, and who knows what whatever other life forms are doing. It's just so beyond me.

Anyways, so today I'm reading this month's National Geographic (which also has a great article about memory) and there's an article about the Hubble Space Telescope and how much science has benefited from it. I tell my brother Diego about it and he's like, "I don't really care about that stuff. It's just not important in my life." This really surprised me and I realized that a lot of other people hold that same point of view and it just........... I don't understand why. He said that scientists who research that stuff just question life too much, they try to look for meanings about life too hard. His example was the idea of parallel universes. He was just like, "Who cares? How would knowing about that affect my life?" But we wouldn't even be here if everything in space didn't exist (like our planet!). I would still want to now about parallel universes if they did exist, even if it didn't affect my life.

But then I wondered about me. Actually, I do question the meaning of life. I wonder about the purpose of our existence, why we live, what is beyond our comprehension. Maybe I just don't want to think that it's all meaningless. Do we just live, have babies maybe, and then die? I want to think that there is something greater, not in the individual sense, but in the...... I don't even know how to phrase it. I want to know about the things that are greater than us, bigger than us. I guess I could only care about what happens in our planet and try to find the meaning of life there........... But there's something intriguing about the chaotic, straightforward, unprejudiced, even seemingly random activities of the universe.

Even if I'm a grain of sand on the beach, I'd still like to know that my beach is part of something bigger, like an ocean, or next to a city, or on the planet Earth. Clay's favorite South Park episode is one where someone gets lice and they show how the lice don't realize that they live on a human's head and that soon they'll all die because the kid's gonna wash his head with lice killing shampoo. He likes it because he's like me, what do we know about our existence? He's like, we could be lice on someone's head and not know it because it is beyond our comprehension. Now, of course I don't think we're literally lice on someone's head, but I mean, we can't claim to know, with certainty, where we stand in all of existence. (In my Valley girl voice) So yeah, I like to learn about space and stuff because I'm like awed by things way bigger than me.

But does that make me someone who questions too much? Who rejects the simple explanations because I'm looking for "deeper meaning?" I don't know, because I think that the people who don't ask questions, who don't want to look at the bigger picture, who don't take ideas and ponder them, who don't want to be open to that which is different from them.......... I think those people miss out on so much. They'll never understand the role they can play in the grand scheme of things.

I wonder if I'm speaking too broadly and generally. I just don't think I can make my argument more specific yet. I also didn't think I'd write so much about this, lol.

So, my mom is gone, of course I was sad when she left. But Clay, my dad, and my brothers have been really sweet in the way they've offered to help me if I need help. Clay took me to get the only craving I've had recently: a beef bowl from Yoshinoya, yum! Sergio made me lunch one day, Diego made me a cereal dinner (lol, that's what he had so it was kinda funny), Eduardo has offered to help with the cleaning, and my dad takes care of the dishes, lol. He also takes me to my doctor's appointments and he always offers to take me for a drive or a walk somewhere, but I still don't want to so I haven't. I know, I know, I need to get up and out. To tell you the truth, I think I just feel alienated from society now and just don't want to interact with the outside world. Pretty simple, but not healthy. I don't know why I feel that way but I do. However, I need to start going for walks and rides so maybe I'll start working on that too. Too bad I've said this before and it still hasn't happened.

So I updated my Netflix queue and I'm excited about my upcoming movies, Super Troopers and Diary of a Mad Black Woman. Yes, I want to laugh, I always get serious movies. My recent music downloads? Keeping it old school (US) with old Ice Cube (Today Was a Good Day) and old school (en Espanol, lol) with Los Bukis. I know ya'll remember Tu Carcel! And if you've never heard it, you're missing out...........

By the way, I still love Grey's Anatomy and Brothers and Sisters (swear, even though we're completely different, reminds me of my family), really really like Pushing Daisies (I love Kristin Chenoweth!) and Big Shots, and am so so about Private Practice and Dirty Sexy Money. I still really like Men In Trees but they moved it to Friday nights! Seriously, I can watch it because I'm always home on a Friday night but what if I had a life? That makes me wonder that maybe the ratings weren't that great but good enough to still keep it for now but still headed towards eventual cancellation. Now, for no apparent reason I never got into Ugly Betty. You think I would have considering how much I used to love my old novela with the same storyline. I never even had the desire to watch an episode. Of course, now that I've missed all the back episodes, I like the damn show! It's pretty funny, I don't know why it took me this long to jump on the bandwagon.

I realized that I'll probably never become addicted to novelas again. When I was in high school, I was a big novelera. Going away to college killed it though because Ithaca didn't have Univision. After a few months of having my mom tape the daily episodes of my favorite novela to mail to me, I realized I had to give it up, at least while I was in Ithaca. Now, the problem is that they run at the same time everyday Monday-Friday. This is problematic when you also have favorite shows on prime time English channels. When I was in the hospital, I started watching Destilando Amor because of my mom and because the new episodes and new shows on prime time TV hadn't started yet so I didn't care about not watching reruns. But once my new seasons started, Destilando Amor went out the window. I'll just never be able to fully keep up with it. Too bad, it looked pretty good.........

By The Way, My Fish Is Still Alive!

Not much has gone on the last couple days.

My mom is going to Nicaragua to visit my grandma. She's leaving this Saturday (10/20) and coming back 2 weeks later (11/5). She's really worried about leaving me, according to her home alone, but I reminded her that my dad is here, my two brothers who drive, and Clay. Not including my friends and her friends who have volunteered their help should I need it. I'll be all right, although I will miss her ALOT.

I met with my doctor on Tuesday and told him the following story. So my hands have been peeling lately, like they're extremely dry. It doesn't bother me but I can pick my skin off, actually like a bad sunburn and you can pick at the skin. Anyways, one night I was watching Ben-Hur (my mom got the VHS from the library for 50 cents months ago and I felt bad for not watching it) and in the movie, a mom and her daughter get leprosy. Can you see where I'm going with this? First thought, "Oh my God, what if I have leprosy?" Second thought, "What if I gave leprosy to my whole family?" But of course, being the intelligent woman that I am, I decided not to freak out and went online to do some research. Not too long into my research I had my third thought, "Maria, where in the hell would you get leprosy from?" So, my doctor laughed, reassured me it wasn't leprosy and that it was normal, a result of the chemotherapy. He said it was almost like a chemical peel and that would go away.

It's kinda crazy that side effects from the chemotherapy are still popping up weeks later.

So I always go through music phases and lately its been disco. Not alot but most of the Saturday Night Fever soundtrack and some other random songs. I've been neglecting my netflix movies so I need to pick that back up.

Anyways, that's pretty much all the recent action. I know, it hasn't been much. But the weekend is coming up and I kinda want to go watch Across the Universe. I figured I need to get back out there. I've been kinda scared to leave the house but I need to start taking steps back to normal life. Well, I guess that's it. Maybe something exciting will happen so that I can blog about it later, lol.............

I'm In A Weird Mood

Today is a chilly gloomy overcast day. It's so weird. When I entered the hospital, it was first in mid August and then again in mid September. The days were still so hot and suffocating. Now that I'm home now, the change in weather just seems so sudden. I totally missed the dog day's of summer. Today I realized it was time to put away the shorts and take out the sweaters.

So today I found out that my grandma does have pneumonia but that she is doing well. However, they are keeping her in the hospital to make sure it doesn't get worse because it's been raining alot lately there. I think my mom wants to go visit her soon. I wish that I could go but it's impossible right now. We'll see how the next couple weeks go.

Uh oh, expect some grandma stories soon....... Just because I think she was the best grandma ever. Actually...... let's share some now.

My grandma (my mom's mom) lives in Nicaragua and has come to LA to visit several times over the years, usually when my mom was pregnant with one of my siblings. My earliest memories of her are when I was about 7 or 8 (when Sergio was born). She had tried to teach me the rosary at that age and I remember I would pray with her at night. But then in order to get us to go to bed early she would tell us that if we didn't go to sleep early, a monkey would come and steal us by putting us in his bag where he would take us to another city and sell us as slaves. Of course we believed her and rushed to go to sleep.

Then when I was about 12 or 13, she came again (for Diego's birth). This time she always made my favorite food, mini meat patties flavored with lemon served with rice. She used to go to church twice a day, early in the morning and then again in the afternoon at about 5pm. Because we never had anything to do, Eduardo, Fatima, Sergio, and I would usually go with her in the afternoons. They were always memorable experiences. We would walk to the church because it was like a 15-20 minute walk from our house. Now, my grandmother had a bad habit (that my mom has too, to our embarrassment) of stealing plants. From other people's houses, the metro station, the bank..... anywhere. Not the entire plant, just like a branch. But she would make us cover her and we would always get embarrassed and yell, "Abuelita!" She would just laugh and say, "Escondanme," hide me. By the time we got home, she would have 2 plastic bags full of plant parts. We still liked going, however, because we could run and play on our way there. And nobody goes to church at that time so we were usually the only ones there, except for maybe another old lady with a veil.

I liked that she was always cheery with us. Always laughing and playing, chasing us around the house with us yelling, "Abuelita!" And she would just giggle and keep doing it. She just made me laugh. And she was old school abuelita. Always wore dresses with a big cardigan and penny loafers with knee highs. And at night she slept in her silky slips.

The last time I saw her was I think my collage year freshman Christmas break. They didn't tell me she was in LA and when I got off the plane, I saw her at the airport and I was just so happy to see her I started to cry. That's what I miss about post 9/11 travel. Before, as soon as you got off the plane, people were right outside waiting for you. Now if people pick you up, they have to meet you in baggage claim instead. It's just not the same.

So that's a little bit about my grandma. I love her and I'm glad she was just the way she was because my memories of her are beautiful and happy. I hope she gets better soon.

Well, I was thinking about religion today. To be honest, one of my problems with religion is the way that people manipulate it. I feel like religion, let's take Catholicism because that's what I was raised with. Anyways, I feel like some Catholic doctrine does teach one how to be a better person. Ideas like community, charity, forgiveness, love instead of hate, these are great ideals for humanity. What I don't like is when religion is used to exclude, to condemn, to criticize, and to punish. Do this or you're going to hell. Do this or you deserve bad things to happen to you. I admire the people who aren't hypocritical and encourage others to help themselves and others. It's the people who say live this way or be punished, but they don't live that way. They don't practice forgiveness, or understanding, or love. They are the people who alienate others from religion.

My other problem with religion is blind faith. I feel like I'm that type of person who looks for proof. When things happen, I like to know why and how. I used to pray, I used to go to church, and I used to believe. But believing without ever hearing or seeing anything in response became hard. So now, it's not that I don't believe, but I also don't see any proof that shows me that I should. Anything could be true or not true. There is so much we don't know about life, existence, our beginnings, and the universe. How can we say with conviction that a certain spiritual view has to be true, without any way to prove it? In this world, there is good and bad. And it both happens to good and bad people equally. I see decent people experience hardships and then great things happen to the people who least deserve it. Why should I think that I will have a better life just because I believe in God or Jesus or Mary?

It's complicated, my relationship with religion. I don't think less of those who believe and strive to be good people. I respect people's faith. I have a harder time with the hypocrites and the people who blindly follow them. I'd like to have faith, but I just don't. So I follow the doctrine that I believe helps me be a better person. I'd like to help people selflessly just like people have helped me selflessly. When I have kids, I'll still want then in Catholic school, like I said, because I feel that overall, the pure teachings teach positive qualities. My kids can decide for themselves what they want to believe.

I think this has been on my mind so much because so many people tell me they're praying for me and that reminds me of how religion teaches positive values. I am touched by everyone's concerns and prayers. Thank you to all who are praying for my recovery. Then I guess I feel bad that I can't sincerely say, "I'll be praying for you." What can I do instead? I do care. But how can I show it? Sending food, giving money, and telling people I'm here for you just doesn't feel like it's enough. Sigh..... don't think this will be resolved soon............

What A Long Day!

Before I forget, I got my sense of taste back!!! I know it seems like I just wrote about how it was gone, but I didn't have it for a good 3 weeks. It's been these last couple days that it's been coming back quickly because when I was in the hospital, I still didn't have it. So, kinda cool. My stomach is still picky about what it likes and doesn't like so I'm still staying away from spicy and acidic food.

Well, these last 2 days have been... somber somewhat. I mentioned my godbrother died of leukemia not too long ago. Well his family actually lives here in the LA area so my mom and I have been in touch with them. Sometimes I think about how unless you have cancer or have been a caregiver of someone with cancer, you'll never really understand what life for us is like. In that same respect, unless you've lost a sibling, no one can understand what that is like. I look at my siblings and I can't imagine not having one of them around. So I think of my madrina's kids, who really aren't kids anymore because they're 27, 24, and 19, and my heart goes out to them. I don't know what it's like to lose a sibling. So the best I can do is tell them that I am here if they need me and if they ever need to talk or vent, I'll be a good listener. We grew up together as kids, went to each other's family parties, and generally ran wild whenever we were all together. My mom once told me that when you lose someone, you never forget them but that with time, it gets easier to remember them. I've never lost someone extremely close to me, I wonder if that's true.

*********

Ok, I wrote the previous intro a few hours ago. Then I had to leave to visit my madrina and her family so I just came back. It was really really great seeing them. Like I said, we were all close as kids. As adults we never see each other anymore. The last time before today that we saw them was over a year ago. I hadn't been diagnosed with Hodgkins yet and their brother was walking around, laughing and joking. Things were very different.

Anyways, Clay blogs on My Space and weeks ago he wrote something that for some reason I totally clicked with. Not the events but the feeling. I told him I would steal his blog entry and post it on mine because I liked his so much so here it is, no punctuation and all:

I usually like to remain positive by attempting to put usually irrelevant twists on generally negative situations however recently this practice proved futile and I was forced to abandon. Last night the Association I am employed by conducted a regular Board Meeting which I luckily was allowed to attend for no additioinal pay while my assistant sitting next to me was racking up double overtime and all I could think about is the fact that I was recieving $0.00 for the 5 and 1/2 hours I was presenting well researched, diagrammed, analyzed and re-analyzed bullshit to a group of people incapable of making a decision between the five of them while the person nxt to me whose job it is to write down what I say and the incapable people say is making more money than I make while I work for my regular hours of 9-5 during the time when I am supposed to be working before 5 o'clock in the afternoon when I am supposed to get in my Volvo and cart myself thorugh an hour of traffic so I can have an egg sandwich and drink myself to sleep like any other self respecting American. Nonetheless after 5 and 1/2 half hours of listening to attornies yell at doctors with my head face down much like a poker game to hopefully not let anyone even consider that I might have an opinion it came time to discuss my raise which i had requested sometime in July however everyone was too tired so my General Manager promised me that it would be discussed and done in an Action Without a Meeting (which never happens) so I got in my champagne Volvo put on some talk radio ran a quick errand to drop something off for an employee who will be filing for disability whom I watched have a stint yanked from his penis earlier in the day by a tube and a video camera I hopped on the 90 freeway to get to the 405 and reminded myself that hey "at least when you leave work at 1 o'clock in the morning you don't have to sit in traffic" I put a smile on my face and accelerated to 110mph for a brief moment until the loom of red was at my forefront and I was forced to slam on my brakes and come to a complete stop at 1 o'clock in the morning for upwards of 45 minutes. During this time I smoked nearly an entire pack of cigarettes, had several minor strokes, contemplated suicide on minutes 8, 24, 37, and 42, and hit the old stress relief button on the steering wheel about 6 or 7 times for a good 30 seconds to a minute to each time soliciting reply honks and strange looks but it helped sooth the soul somewhat. Nonetheless (strage word "none the less" why are you allowed to do that, Ican'tdoit in other situations or I am illiterate, I digress) I eventually made it home swapped the egg sandwich for ramen in the interest of time and drank myself to sleep thinking the somehwat disturbing thought that there was absolutely nothing positive about this night. I have never had this thought before and hopefully it won't happen again in the future. And now I am at work so instead of editing this Blog Masterpiece I think I will return to the regular bullshit and leave the spelling errors for you to pick out and comment on while you are at work or school or wherever you may be.

-twos [Clay]

I think I read it the day of my meltdown and it just clicked with me. I guess it's something about having a bad day and and realizing at the end of the night that the only way to fix it was to go to sleep.

My maternal grandmother is sick. She lives in Nicaragua and they think that she might have pnemonia. She's been to LA many times before and all my memories of her are happy and laughter-filled. I might have to become a prayer. So many people pray for me and it's touching. And when things like this happen I feel helpless. Is that why people pray during illness? Does it take away that feeling of helplessness because you're actually doing something? I'm not trying to offend prayers, I wish I was one of them. But my faith just isn't that committed yet. Too bad. I hope my grandmother is ok.

Finally done! This entry has been interrupted by too many phone calls, room visits, and visits to other people. I mean, all those interruptions were really important but still, it feels good to finally finish.... and it wasn't even that long!

Nice and Extra Long

Ok….. I know it’s been awhile. To tell you the truth, I’ve just been so tired and it really has taken this long for me to get my energy back. I think today was the first day in about a month that I’ve walked around and gone for a ride. Oh and today I was discharged from the hospital too. I guess the best place to start is where I left off.

So I had the mouth sores, the cool morphine shot machine, I wasn’t eating, I was getting a fever every other night, but I felt like at least I wasn’t throwing up anymore. Anyways, 2 days after I last wrote, I noticed that I started getting these little red dots on my arms so I showed them to a nurse and she told me not to worry. The next morning I received a platelets transfusion for the first time ever but I had an allergic reaction to it. So my whole body broke out in hives and they gave me Benadryl and the hives went away. But the little red dots I’d noticed the night before only on my arms had now spread all over my body, including my face. Like clusters of tons of little red dots. I try not to freak out. My doctor sees me that day and tells me not to worry that actually it’s completely normal and that by the time I leave the hospital, they’ll be gone. By the way, this is a Thursday morning. So later that day a nurse tells me that the dots are a sign of having a low platelet count, which makes sense.

So, this is what happens Thursday and Friday that makes me have a meltdown on Saturday. The dots itch. Benadryl doesn’t work for the itch. So Thursday I scratch all day because the Benadryl doesn’t work. Also, I’m still getting the fevers so Thursday they tell me that it’s because my Hickman catheter is infected so they’re taking it out on Friday. Friday rolls around. My doctor prescribes a steroid and a hydrocortisone cream for the itch. It doesn’t work. So Friday I continue to scratch all day. They take out the catheter and they tell me that now they have to start a new IV line on my hand to give me my 8 antibiotics, morphine, and IV nutrition (since I’m still not eating). If you’ve read my blog you’ll remember all the troubles I’ve had with IV lines on my hands. Basically I’m paranoid and have a tendency of crying. But of course it turns out I need 2 IV lines because one is for my medication and the other one for the nutrition. By the way, they had to be in the same hand to leave the other hand free. As soon as the nurse puts in the first needle and I feel the sharp pain of her moving it around to get it in the vein, I turn my head and start to cry. Of course she feels bad and she apologizes for hurting me and I tell her it’s ok. Anyways, the 2 lines get put in my right hand, you know, the hand that does everything that I can no longer use.

So it turns out the potassium in the IV nutrition is irritating to the nerves by the vein. My hand starts to hurt but the nurse tells me that there’s nothing she can do about it since I need to be given the medication and nutrition. So once she leaves and I’m left alone, I just start to cry because I feel so miserable. Literally miserable. My mom gets there later and she tells me it’s ok to cry and that makes me feel like maybe I’m not just overreacting. So Saturday morning rolls around. Mind you, I’ve spent 2 days scratching like crazy because nothing they give me works and my hand still hurts. Now, I hope that I’m correct when I say that I am a logical, intelligent, and reasonable adult. Except this particular Saturday morning when I look in the mirror and the red dots are still everywhere. I knew they would go away eventually but that Saturday I started thinking, what if they’re wrong? What if they NEVER go away?! What if I have to live like this forever! I’m never leaving the house!!!

As you can tell, I am headed towards the breakdown. So my doctor walks in that morning and asks me how I am. Now, I love my doctor by the way, yes he’s my doctor crush, and every time I see him my face totally lights ups and I’m always cheery and smiley around him, I‘ve never cried in front of him. But this morning I start trying to talk and I just start crying. All this time I’ve tried to stay positive and yeah I’ve gotten sad and I’ve cried but I’ve never felt that feeling of just complete misery. I was just completely miserable and unhappy. And I tell him it’s because of the itch and the IV. He hugged me and told me he’d try to make me happy again. Have I mentioned how I’ve turned into a child? So he orders that the morphine be removed, cuts my antibiotics in half, orders a stronger steroid, and tells me that if I start eating he’ll remove the IV nutrition that night. He thought maybe I was on too much medication. Isn’t that funny? Uh oh, she might be on too many drugs, hence the hysteria. By the way, my morphine machine? I was sad to see that go.

Needless to say, I started making myself eat that same day and the new steroid worked! No more itch. Then I get this new nurse who is super nice and practically insists she take out the offending IVs. By the time she took them out, my hand was swollen and I could barely move it. So she calls this nurse who it turns out is an IV genius and she gets a new line started on my left hand with no pain and no crying. By Sunday I had no more itch, the dots looked like they were fading, no more fevers, no more IV pain…. life was looking up. The doctor comes in and he’s happy to see that I am happy again. Then he cuts the rest of my antibiotics until there’s only one left. Monday morning he tells me I can go home the next day.

At this point I’m torn between thinking I just want to get out of here and I don’t think I’m well enough to go yet. But the former beats out the latter so I go home on Tuesday. According to me, my only problems are that I’m still really weak and just want to sleep all day and I’m still having problems eating. This is why I’m having problems eating: I lost my sense of taste. Yes, you read right. No taste. I’ve now had 2 discussions about the relationship between taste and smell. I can smell, but I can’t taste. So texture has become extremely important. The worst part is eating something you love and realizing the texture grosses you out. Examples: pizza, lasagna, and my favorite candy in the world, salsaghetti. Salsaghetti is a kind of Mexican candy. It’s watermelon flavored ropey gummy candy (like spaghetti) and then it comes with a separate package of this tamarindo and chili flavored sauce that you’re suppose to pour on. It is delicious!!! Except when you can’t taste so it just feels like slimy gummy thing. Pizza texture: gross. Lasagna texture: gross. I haven’t felt like eating any of them since. So my all time favorite, Flaming Hot Cheetos with real lime juice poured over it? I refuse to eat it until I know it’s safe for me to enjoy. That’s one experience I can’t ruin.

So anyways, I went home Tuesday, which actually was last week Tuesday. Oh and he was right, Tuesday I woke up and the dots were all gone. When I got home I literally ran to my room and feel asleep for 4 hours. Tuesday, Wednesday, and Thursday were all the same. As soon as I got home, I started getting splitting headaches, 1 in the day and 1 in the night. I started getting chills that never developed into full on fevers because of all the Tylenol Extra Strength I was popping for the headaches. My stomach always hurt. All I did was lay in bed all day, I neither the will nor the energy to do anything more than watch TV. Finally Thursday night I developed a fever but my head hurt so much I just took some Tylenol to get rid of it. They’d told me before that anytime I get a fever I need to go straight to emergency. But I didn’t listen and I just called in the morning and told them what happened. They told me to just come in and that my doctor would see me. I get there and tell me why I start throwing up while I’m with the doctor. So he suggests that maybe I was let go too early and that I just need to be admitted again. So Friday I was readmitted to (or is it into?) the hospital.

Kinda sucked because my friend Adri was coming to visit that same weekend. But of course she didn’t care and she spent the weekend with me at the hospital. It was really nice and it felt really good to have someone to joke with about my hospital experiences. She left on Monday. Anyways so this whole week I’ve been back on tons of antibiotics, apparently I had an infection. I forgot to mention, while I was home I also started getting another weird rash. They would start out as red circles and then they’d dry out in the middle. When I was home I had it on my chest and then realized Friday morning that it had spread to the back of my head. While I was in the hospital it spread to my stomach, my arms, legs, and my back. What sucks is that some of them itch, the bigger ones. They could never really tell me exactly what it is. They assume that I’m having a reaction to sulfur based antibiotics. Well, yesterday they did a skin biopsy and they’ll let me know hopefully in a few days. Yes I actually still have it. I’m not worried though, I assume it’ll eventually go away.

Let me try to organize myself again. The headaches went away sometime on Tuesday. They just mysteriously left. I think they were stress headaches. I’m just glad they’re gone. The rash spread but again, I’m not too worried. I’ve already freaked out once over a rash. Eating has become much better. A nutritionist gave me good advice about what to eat and what to avoid to help my stomach get back on track and it’s worked. Plus my sense of taste is coming back (they actually told me it was a common side effect of the chemo and that it would eventually come back but that I just had to be patient and keep eating). Today I was even hungry! I’d lost my appetite this whole time but today was the best day so far.

So slowly my energy has been coming back to me. Again, today being the best day so far in about a month. Like I said in the beginning, I didn’t come home to sleep and I actually went for a ride too. This one nurse totally gave me a lecture while I was waiting for a room. She reminded me that I’d just had a transplant and that I needed to take fevers seriously, they were signs of an infection. She also reminded me that I didn’t have to grin and bear uncomfortable feelings or sensations (headaches and stomachaches), but that I needed to call as soon as I had a problem. I realize that she’s right. Really, my problems don’t get better, they just get worse.

So I haven’t mentioned how I’ve lost all shame. The hospital has made me shameless. At first I was really into privacy and keeping the more embarrassing problems secret as long as possible. But I realized even if I whisper it into the nurse’s ear, she tells my doctor who writes it in my chart and then every person who walks in asks me about it. It happened both of these last 2 times and it is just so embarrassing it’s become funny. I’m always like, that is no longer a problem so stop asking me about it! I’d get into detail but I’m trying to regain some of my decency back so I’ll just stop at that.

I have to be honest, this was rough. But then one day, a nurse told me about a guy who’d been at the hospital for 3-4 months for an allo (not his own, mine was an auto, my own) bone marrow transplant and how few people would come visit him so she and other nurses would go visit him during their breaks to cheer him up and give him pep talks. Apparently that was 2 years ago and he’s doing much better and just got married recently. All I could think about was how lucky I was to not have to be in the hospital so long and how my mom was with me the whole time. I thought about all the times I’d said that I couldn’t have done it without her and I thought about the nights I wouldn’t go to sleep until she got there. Then there were the nights I’d wake up and look over to make sure she was there and it would put me at ease to see her sleeping form. And I thought about how lucky I was still. Things could always be worse. They can always be better, but in my situation, they can be a whole lot worse. I’m not there and for that, I’m lucky. Anyways, it was actually an inspiring story and made me realize that I shouldn’t throw myself pity parties because others have been to darker places and they’ve come out all right.

You never realize how bad you felt until you feel much better. This time that I’ve been discharged, I just feel so much better. And it’s nice to realize that as time passes, I will continue to feel even better.

On a sadder note, last week I found out that my godmother’s son died of leukemia. He had been diagnosed at 18 and he died I believe a couple weeks before his 22nd birthday. His death I think haunted me last week. Could explain what triggered my stress headaches, his brother called me the day after I was discharged and that same day I had my first headache. Maybe I finally dealt with his death and realized that just because he was young and he still died doesn’t mean that I will.

It’s been an eventful couple of weeks. I even forgot what Day + number it is. I’ll figure it out tomorrow. Think I’ll go to bed now. My bed.