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............
Monday, October 15, 2007
Sunday, October 14, 2007
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.
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!
Friday, October 12, 2007
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.
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.
Monday, September 24, 2007
Ok, Maybe Not Lucid Enough
I got as far as a title but then I fell asleep!
So today is Day +4. I don't even know how to explain what the last 10 days have been like. They weren't joking about bringing out the big guns. Everything pretty much from Sept. 15th (a Saturday) to about Sept. 21st (a Friday) is really hazy. I was sooooooooooooooooooooo sick. Like dying a slow and painful death with razors sick. I couldn't keep anything down. And it wasn't like hungover throw up, it was like green bile and insides rearranging themselves throw up. I know, TMI. So they kept me drugged up most of the time but of course I didn't realize it then. It's only now looking back at it that I realize I don't remember anything but sleeping and throwing up. My mom was with me almost the whole time and she told me it was pretty bad. At some point I gave her my cell phone and told her I didn't want any contact from anyone. But she let Clay and my sister know why I wasn't picking up.
My nausea isn't as bad anymore but now I have mouth sores! I think sometime during the hazy period they put me on one of those IV nutrition things and I'm still on it, now because my throat is killing me and I can't eat or swallow anything more substantial than applesauce.
It's weird because I'm happy I'm feeling better, mouth sores and all, but it's still nowhere near being ok yet. But it's better than the nausea period........... One kinda cool thing is they gave me this thing where when I press it, morphine comes out for my throat pain. I still can't eat anything but the concept is cool.
It's so weird. It's like I can't believe I was that sick. But I was. And I was pretty loopy through most of it. But I'll remember snatches of memory and they'll remind me I was that sick just a few days ago. And today my doctor even talked about when I would get to go home, and I'm like, I'm not even eating and drinking on my own yet, how can we even talk about when I'm going home?? It was weird.
Anyways........ I'm kinda tired now so I think I'll take a nap. My mind sometimes feels foggy still.........
It's funny because my doctor said I actually had extreme side effects to the chemo. Of course I would.......... I almost smiled.................
So today is Day +4. I don't even know how to explain what the last 10 days have been like. They weren't joking about bringing out the big guns. Everything pretty much from Sept. 15th (a Saturday) to about Sept. 21st (a Friday) is really hazy. I was sooooooooooooooooooooo sick. Like dying a slow and painful death with razors sick. I couldn't keep anything down. And it wasn't like hungover throw up, it was like green bile and insides rearranging themselves throw up. I know, TMI. So they kept me drugged up most of the time but of course I didn't realize it then. It's only now looking back at it that I realize I don't remember anything but sleeping and throwing up. My mom was with me almost the whole time and she told me it was pretty bad. At some point I gave her my cell phone and told her I didn't want any contact from anyone. But she let Clay and my sister know why I wasn't picking up.
My nausea isn't as bad anymore but now I have mouth sores! I think sometime during the hazy period they put me on one of those IV nutrition things and I'm still on it, now because my throat is killing me and I can't eat or swallow anything more substantial than applesauce.
It's weird because I'm happy I'm feeling better, mouth sores and all, but it's still nowhere near being ok yet. But it's better than the nausea period........... One kinda cool thing is they gave me this thing where when I press it, morphine comes out for my throat pain. I still can't eat anything but the concept is cool.
It's so weird. It's like I can't believe I was that sick. But I was. And I was pretty loopy through most of it. But I'll remember snatches of memory and they'll remind me I was that sick just a few days ago. And today my doctor even talked about when I would get to go home, and I'm like, I'm not even eating and drinking on my own yet, how can we even talk about when I'm going home?? It was weird.
Anyways........ I'm kinda tired now so I think I'll take a nap. My mind sometimes feels foggy still.........
It's funny because my doctor said I actually had extreme side effects to the chemo. Of course I would.......... I almost smiled.................
Sunday, September 23, 2007
Friday, September 14, 2007
Eeeek!
So today I start chemotherapy. I'm getting nervous! I've been drowning in pills since I got here and recently they gave me Benadryl and Ativan so pretty soon I'll be conking out. I swear I have more to say but the meds are starting to kick in. I'm getting so sleepy..................................
Thursday, September 13, 2007
Short Update
This will be super short just because I want to write but I think I should go to bed instead.
I am back at the hospital. Yup, I checked back in today. I am excited and anxious all at once. I feel like my last transplant experience was anticlimactic. So although I've been warned that I should stop wishing that I'd gotten sick, I feel like I won't believe I'm getting better unless I suffer a little. I'd be posing as a bad ass otherwise. I need my suffering cred to be able to join the post treatment cancer survivors clique. Otherwise they'll just shun me!
Anywhoo, so I got my PET scan and CT scan results back. Let's see if you can guess the results........ nope didn't get better......... nope didn't get worse........... ding ding ding, that's right! No change whatsoever. It is disheartening to say the least. So they're bringing out the big guns this time, which they assure me will show no mercy. Good! As I always say, pain is pleasure! Er......... I mean, no pain no gain! Let's just hope they also kill the cancer and not just my will to live.
Well, it starts tomorrow................
I am back at the hospital. Yup, I checked back in today. I am excited and anxious all at once. I feel like my last transplant experience was anticlimactic. So although I've been warned that I should stop wishing that I'd gotten sick, I feel like I won't believe I'm getting better unless I suffer a little. I'd be posing as a bad ass otherwise. I need my suffering cred to be able to join the post treatment cancer survivors clique. Otherwise they'll just shun me!
Anywhoo, so I got my PET scan and CT scan results back. Let's see if you can guess the results........ nope didn't get better......... nope didn't get worse........... ding ding ding, that's right! No change whatsoever. It is disheartening to say the least. So they're bringing out the big guns this time, which they assure me will show no mercy. Good! As I always say, pain is pleasure! Er......... I mean, no pain no gain! Let's just hope they also kill the cancer and not just my will to live.
Well, it starts tomorrow................
Monday, September 10, 2007
F*%#!
So at about 8pm I started a new entry and I ranted and raved for 2 hours and when I pressed Publish Post, poof! It disappeared. And of course I didn't think to save it when I was almost done, so all I was able to recover was the opening paragraph.
Forget it! Just forget it!
And of course I'd decided to get all deep and talk about the meaning of life.......... Guess I'll give it another go tomorrow...........
Forget it! Just forget it!
And of course I'd decided to get all deep and talk about the meaning of life.......... Guess I'll give it another go tomorrow...........
Sunday, September 9, 2007
Wasn't Tired
My song for today was Blaze of Glory by Jon Bon Jovi.
So today my sister Fatima, my brother Diego, and I went to play miniature golf, which I love. I had the bright idea of going to a mini golf place I'd been to before but wasn't sure where it was. I knew it was by Disneyland so I figured, how hard could it be to find it? Problem was, we didn't realize until we were on the road that none of us knew how to get to Disneyland. So needless to say, my sister wasn't a very happy camper after being lost in Anaheim for an hour and a half..... oops, my bad! Thank goodness the place was actually really big and cool. We had fun after we all calmed down. Usually I play with my boyfriend Clay and he's really good so I always lose, but today I actually did really well so I was happy about winning. Then we headed home and it only took 30 minutes. At least I know how to get to it now........
I had my PET scan on Friday. I was so nervous the night before that I couldn't sleep and then I woke up before my alarm went off in the morning. Then when I got there, I fell asleep during the exam! I had a crazy dream, I hope I can explain it well. I dreamt that I was getting the PET scan but feel asleep and had a dream that I was in Nashville with my BFF Danette and that she was showing me her boyfriend's house. I dreamt that I woke up from that dream and was sitting up in the PET scan table.In my dream I realized I had been dreaming and that I woke up in the middle of the scan. The technician came over and told me to lay down because I wasn't suppose to move and they weren't done. Then the PET scan machine malfunctioned and threw me off the table onto the floor. But the technicians ignored me and started leading the new patient in instead. I was mad because I had thought it was so unprofessional that they hadn't even asked me if I was ok so decided to just leave the hospital. That's when the technician woke me up in real life to tell me the scan was over. So basically I had a dream about having a dream while doing exactly what I was doing in real life, it was weird. I was almost disoriented because I was like, I'm still doing the PET scan? I thought it was over! But that had been in my dream. It was crazy, almost Twilight Zone-ish.
Tomorrow my sister is finally leaving back to Seattle. It is going to be very hard when she leaves..... I think my mom and I are especially going to take it hard.
Then the 11th I have a CT scan, the 12th I meet with my transplant doctor, and the 13th I check back into the hospital.
And I realized yesterday that.......... 9/11 is coming up soon........... it was the day I found out I had Hodgkin's Lymphoma. What an unlucky day!
Uh oh........... I am going to have to ponder the significance of this further............ but not tonight.............
Till next time, same bat time, same bat channel!
So today my sister Fatima, my brother Diego, and I went to play miniature golf, which I love. I had the bright idea of going to a mini golf place I'd been to before but wasn't sure where it was. I knew it was by Disneyland so I figured, how hard could it be to find it? Problem was, we didn't realize until we were on the road that none of us knew how to get to Disneyland. So needless to say, my sister wasn't a very happy camper after being lost in Anaheim for an hour and a half..... oops, my bad! Thank goodness the place was actually really big and cool. We had fun after we all calmed down. Usually I play with my boyfriend Clay and he's really good so I always lose, but today I actually did really well so I was happy about winning. Then we headed home and it only took 30 minutes. At least I know how to get to it now........
I had my PET scan on Friday. I was so nervous the night before that I couldn't sleep and then I woke up before my alarm went off in the morning. Then when I got there, I fell asleep during the exam! I had a crazy dream, I hope I can explain it well. I dreamt that I was getting the PET scan but feel asleep and had a dream that I was in Nashville with my BFF Danette and that she was showing me her boyfriend's house. I dreamt that I woke up from that dream and was sitting up in the PET scan table.In my dream I realized I had been dreaming and that I woke up in the middle of the scan. The technician came over and told me to lay down because I wasn't suppose to move and they weren't done. Then the PET scan machine malfunctioned and threw me off the table onto the floor. But the technicians ignored me and started leading the new patient in instead. I was mad because I had thought it was so unprofessional that they hadn't even asked me if I was ok so decided to just leave the hospital. That's when the technician woke me up in real life to tell me the scan was over. So basically I had a dream about having a dream while doing exactly what I was doing in real life, it was weird. I was almost disoriented because I was like, I'm still doing the PET scan? I thought it was over! But that had been in my dream. It was crazy, almost Twilight Zone-ish.
Tomorrow my sister is finally leaving back to Seattle. It is going to be very hard when she leaves..... I think my mom and I are especially going to take it hard.
Then the 11th I have a CT scan, the 12th I meet with my transplant doctor, and the 13th I check back into the hospital.
And I realized yesterday that.......... 9/11 is coming up soon........... it was the day I found out I had Hodgkin's Lymphoma. What an unlucky day!
Uh oh........... I am going to have to ponder the significance of this further............ but not tonight.............
Till next time, same bat time, same bat channel!
Thursday, September 6, 2007
Feeling Dreamy
So I'm sitting here listening to a little Frank Sinatra, Ella Fitzgerald, Diana Krall, Louis Armstrong, and some Moon River. :)
So I've mentioned Sex & the City is my favorite show ever. Well, I once wrote down my favorite quotes from it and I think I'll share them.
So I've mentioned Sex & the City is my favorite show ever. Well, I once wrote down my favorite quotes from it and I think I'll share them.
- Maybe some women aren't meant to be tamed. Maybe they need to run free until they find someone just as wild to run with.
- The most exciting, challenging, and significant relationship of all is the one you have with yourself. And if you find someone to love the you YOU love, well that's just fabulous.
- In a city of infinite options, sometimes there's no better feeling than knowing you only have one.
- Maybe the past is like an anchor holding us back. Maybe you have to let go of who you were to become who you will be.
- When will waiting for the one be done?
- "Soul mate." Two little words. One big concept. A belief that someone, somewhere, is holding the key to your heart and your dream house. All you have to do is find them. So where is this person? And if you love someone and it didn't work out, does that mean they weren't your soul mate?
- La Douleur Exquise!: Did I ever really love Big, or was I addicted to the pain, the exquisite pain, of wanting someone so unattainable?
- When a relationship dies, do we ever really give up the ghost, or are we forever haunted by the spirits of relationships past?
- Time and Punishment: Can you ever really forgive if you can't forget?
- Do we need distance to get close?
- I am someone who is looking for love, ridiculous, inconvenient, consuming, can't live without each other love.
This one is from the movie How to Deal:
- Life is worth embracing.... Here's to a lifetime of big, messy, wonderfully out of order moments.
And my last one:
- Para expresar lo que siento, me falta espacio, me falta idioma, me faltan idea y pensamiento. - son popular
You know, I think of myself as a passionate person. When I love, my love is.... everywhere and everything. When I get angry, I'm like an erupting volcano. But thank goodness I've learned to control that a little more, lol. When I feel hurt, I admit, my perceived despair can be a little extreme, lol. I think that's why sometimes I can be dramatic or an exagerada. Maybe sometimes it's too much, too much emotion. But you know, I don't think I would want to be any other way. As I've gotten older, I like to think I've calmed down a little more, in the sense that I don't let my emotions run away with me and rule my life. But I'll always cry at movies (and sometimes books), I'll always write down quotes or poems that touch me, and I'll always feel love songs deep in my heart.
Mmmmmmmm...............
Wednesday, September 5, 2007
Just Don't Yell At Me
So I had a very spirited discussion with my sister's boyfriend over how to deal with anger or an argument.
My Argument:
I think that when people get angry, they become irrational, illogical, and they almost always say things that they don't mean. And this includes me. So when I start fighting with someone, I almost always don't want to talk about it or resolve it right then and there because I know I'm angry and I'm not going to listen. I prefer to take time off to cool down so that I can figure out what my real feelings are about the situation. I don't want to discuss things when I know I'm being irrational. Worse, I hate it when I yell or am being yelled at. That's probably the worst thing I hate. So when someone starts yelling at me or I realize that we are both yelling at each other, I immediately just want to walk away to cool down. How are we resolving things by yelling at each other? So I'm a big believer in each person needing their space to think about things rationally. My problem is that sometimes it takes me a day or two to cool down. So I realize how this might piss the other person off. But in the same respect, I'm not going to sit there thinking that the argument is going nowhere.
I am like this because I remember when I was younger and I used to have these big fights for hours with my exes that didn't go anywhere. In almost all my past relationships I used to yell and I was irrational and arguments would go on for hours. I think it's a waste of time trying to talk when you're furious. And I don't want to be THAT couple that's always fighting in public or yelling and cursing at each other.
His Argument:
Problems need to be resolved immediately. If you are angry and you are the person who has been wronged, you should be able to yell at the other person for wronging you. You should not have to swallow your anger, you should be able to express it to the other person. If the other person doesn't want to resolve it immediately, then they obviously don't care. Why would you let the person you love spend an entire day being miserable and angry instead of talking (or yelling) things out?
He comes from a family where you don't go to sleep angry and arguments are resolved right away. He says that emotions, even anger, should be allowed to be expressed. He doesn't think it is healthy to swallow your anger.
So you can see, two very different points of view. About an hour later, neither of us had budged from our corners. We wouldn't even concede small points. Then I told Clay and he pretty much said we were both stupid, lol.
Clay's 2 cents:
People focus too much on the anger and not enough on the emotions that created the anger. We become angry because we have been hurt. So instead of saying, "You did something that pissed me off," which focuses on the anger, it's more accurate to say, "You did something that hurt my feelings and that's why I'm pissed off," which focuses on the emotions, which is really the root of the problem. Having your feelings hurt is what causes you to be angry. He agreed that yelling and trying to talk when you're pissed off is counterproductive. But that taking a day or two to cool down was being selfish. He said that yes people should take a step back to cool off but that that step should be no longer than 30 minutes. He agreed that problems should be resolved at least the same day.
But you know, things can be circumstantial so my point is that what if you feel that you have been greatly wronged, can you really get over it in one day? Or if it's something insignificant, do I really deserve to be yelled at? Tito (my sister's boyfriend) brought up the point that if you are the one who did the wronging, you should expect to get yelled at and that really you should be putting in more of an effort to resolve the issue since it is your fault. I don't know how I feel about this. Even when I've been wronged, I still don't want to yell at you, I still want to take a step back to get over my anger to think about what happened, and to rationally figure out how I really feel about it. And I'd prefer to do it away from you so just give me my space. If I've done the wronging, granted I realize I'm in the doghouse but I guess I assume that you're angry so I give you your space (that's what I would want) until I think you've calmed down and want to talk to me. Tito said that this was a cop out, selfish, and me trying to work only on my time schedule (in both instances). But what would be accomplished with you yelling at me, or me yelling at you, for hours?
Although Clay agreed that yelling doesn't produce any positive results but he did agree that ignoring someone for a day or more was being selfish. He also is quick to point out that in the majority of arguments, there is no such thing as one person being right and the other wrong. He thinks that both parties should be open to examining what they did wrong. I feel like this is a great way to avoid the blame game but it's hard, especially when you think you're right. It's hard to admit to yourself that maybe you've done something to cause the other person to do what they did, or react the way they have.
I think sometimes I have a problem admitting when I'm wrong, mostly because sometimes I can't get past my own viewpoint to see how I've hurt someone else. So I think I'm right, but I'm really wrong. Or maybe not wrong, just unintentionally doing something that is hurting someone else. I feel like that's an important detail, whether you do something intentionally or unintentionally and I guess I want to be given some credit when it's unintentional. But that doesn't really matter when you're the one who's been hurt, intentionally or not. So really, I should just say I'm sorry and stop there. Just don't expect me to beg for forgiveness, unless I know I've done something REALLY bad.
It was quite an interesting conversation.
Yesterday I hung out with my friends Nicole and Patrick. Patrick is a visual merchandiser at the Bloomingdale's in Newport Beach so we met him for lunch. It was nice, except half the mall was closed because of a power outage caused by the heat. I bought a cool grey sweater jacket from Forever 21. Nicole totally showed me up and bought these really cool bronze Gucci peep toe pumps and matching Gucci purse. I was like, nice, I spend $30 and she spends $1,200. My jacket wouldn't even cover half of her tax, lol. It was still fun.
Today, Fatima and Tito took me to the hospital where I had an appointment for a MUGA scan. It takes pictures of my heart. Afterwards we went to the Grove so I could browse at Nordstrom while they waited with me until Clay got out of work. Clay and I then went and had dinner together in Little Tokyo. Again, I had a really nice day. I'm trying to enjoy the little time I have left until I go back to the hospital.
Friday I have a PET scan. I'm nervous and excited. My last one was in June and it showed that my cancer had really not changed since I was diagnosed. I also have a CT scan on Monday so these 2 tests......... they have to be more positive than previous ones. They just have to. I almost wish I was more religious so that I could believe that just by praying alot the results would be great. I'll find out the results by next week.
Too bad I also don't believe all that botanica superstition, otherwise I'd be burning candles and powders and oils for good luck. Guess I'll just hope for the best.
My Argument:
I think that when people get angry, they become irrational, illogical, and they almost always say things that they don't mean. And this includes me. So when I start fighting with someone, I almost always don't want to talk about it or resolve it right then and there because I know I'm angry and I'm not going to listen. I prefer to take time off to cool down so that I can figure out what my real feelings are about the situation. I don't want to discuss things when I know I'm being irrational. Worse, I hate it when I yell or am being yelled at. That's probably the worst thing I hate. So when someone starts yelling at me or I realize that we are both yelling at each other, I immediately just want to walk away to cool down. How are we resolving things by yelling at each other? So I'm a big believer in each person needing their space to think about things rationally. My problem is that sometimes it takes me a day or two to cool down. So I realize how this might piss the other person off. But in the same respect, I'm not going to sit there thinking that the argument is going nowhere.
I am like this because I remember when I was younger and I used to have these big fights for hours with my exes that didn't go anywhere. In almost all my past relationships I used to yell and I was irrational and arguments would go on for hours. I think it's a waste of time trying to talk when you're furious. And I don't want to be THAT couple that's always fighting in public or yelling and cursing at each other.
His Argument:
Problems need to be resolved immediately. If you are angry and you are the person who has been wronged, you should be able to yell at the other person for wronging you. You should not have to swallow your anger, you should be able to express it to the other person. If the other person doesn't want to resolve it immediately, then they obviously don't care. Why would you let the person you love spend an entire day being miserable and angry instead of talking (or yelling) things out?
He comes from a family where you don't go to sleep angry and arguments are resolved right away. He says that emotions, even anger, should be allowed to be expressed. He doesn't think it is healthy to swallow your anger.
So you can see, two very different points of view. About an hour later, neither of us had budged from our corners. We wouldn't even concede small points. Then I told Clay and he pretty much said we were both stupid, lol.
Clay's 2 cents:
People focus too much on the anger and not enough on the emotions that created the anger. We become angry because we have been hurt. So instead of saying, "You did something that pissed me off," which focuses on the anger, it's more accurate to say, "You did something that hurt my feelings and that's why I'm pissed off," which focuses on the emotions, which is really the root of the problem. Having your feelings hurt is what causes you to be angry. He agreed that yelling and trying to talk when you're pissed off is counterproductive. But that taking a day or two to cool down was being selfish. He said that yes people should take a step back to cool off but that that step should be no longer than 30 minutes. He agreed that problems should be resolved at least the same day.
But you know, things can be circumstantial so my point is that what if you feel that you have been greatly wronged, can you really get over it in one day? Or if it's something insignificant, do I really deserve to be yelled at? Tito (my sister's boyfriend) brought up the point that if you are the one who did the wronging, you should expect to get yelled at and that really you should be putting in more of an effort to resolve the issue since it is your fault. I don't know how I feel about this. Even when I've been wronged, I still don't want to yell at you, I still want to take a step back to get over my anger to think about what happened, and to rationally figure out how I really feel about it. And I'd prefer to do it away from you so just give me my space. If I've done the wronging, granted I realize I'm in the doghouse but I guess I assume that you're angry so I give you your space (that's what I would want) until I think you've calmed down and want to talk to me. Tito said that this was a cop out, selfish, and me trying to work only on my time schedule (in both instances). But what would be accomplished with you yelling at me, or me yelling at you, for hours?
Although Clay agreed that yelling doesn't produce any positive results but he did agree that ignoring someone for a day or more was being selfish. He also is quick to point out that in the majority of arguments, there is no such thing as one person being right and the other wrong. He thinks that both parties should be open to examining what they did wrong. I feel like this is a great way to avoid the blame game but it's hard, especially when you think you're right. It's hard to admit to yourself that maybe you've done something to cause the other person to do what they did, or react the way they have.
I think sometimes I have a problem admitting when I'm wrong, mostly because sometimes I can't get past my own viewpoint to see how I've hurt someone else. So I think I'm right, but I'm really wrong. Or maybe not wrong, just unintentionally doing something that is hurting someone else. I feel like that's an important detail, whether you do something intentionally or unintentionally and I guess I want to be given some credit when it's unintentional. But that doesn't really matter when you're the one who's been hurt, intentionally or not. So really, I should just say I'm sorry and stop there. Just don't expect me to beg for forgiveness, unless I know I've done something REALLY bad.
It was quite an interesting conversation.
Yesterday I hung out with my friends Nicole and Patrick. Patrick is a visual merchandiser at the Bloomingdale's in Newport Beach so we met him for lunch. It was nice, except half the mall was closed because of a power outage caused by the heat. I bought a cool grey sweater jacket from Forever 21. Nicole totally showed me up and bought these really cool bronze Gucci peep toe pumps and matching Gucci purse. I was like, nice, I spend $30 and she spends $1,200. My jacket wouldn't even cover half of her tax, lol. It was still fun.
Today, Fatima and Tito took me to the hospital where I had an appointment for a MUGA scan. It takes pictures of my heart. Afterwards we went to the Grove so I could browse at Nordstrom while they waited with me until Clay got out of work. Clay and I then went and had dinner together in Little Tokyo. Again, I had a really nice day. I'm trying to enjoy the little time I have left until I go back to the hospital.
Friday I have a PET scan. I'm nervous and excited. My last one was in June and it showed that my cancer had really not changed since I was diagnosed. I also have a CT scan on Monday so these 2 tests......... they have to be more positive than previous ones. They just have to. I almost wish I was more religious so that I could believe that just by praying alot the results would be great. I'll find out the results by next week.
Too bad I also don't believe all that botanica superstition, otherwise I'd be burning candles and powders and oils for good luck. Guess I'll just hope for the best.
Monday, September 3, 2007
If You Ask Me In Person I'll Deny It!
Remember Naked Guy on Friends? Lol, I love watching reruns! And if I haven't said this enough, Sex & the City is still the best show ever. Sorry, I've been watching alot of reruns lately.
So there's been this heat wave that just doesn't seem to know that it's time to quit. It was hellish yesterday and today. What's made it worse is that it's also been kinda humid too. So can you imagine 95 degrees with humidity? It was awful I tell you. Thank God for air conditioners!
So these last couple of days I've realized that..... my hair is growing back! My hair is fuzzy with the new growth, lol. It should make me happy but instead I'm whatever over it. So this is what happened. Apparently, it was too good to be true that I didn't have any reactions from the high dose chemo so my doctor says they're investigating/doing an analysis of the chemo they gave me. Doesn't that suck? I'm like, don't do this to me! I don't even know what I would do if something had been done wrong. I really really hope that I just did really really well. Anyways, this relates to my hair because supposedly it should have fallen off again. But that's what they said about my ABVD chemo and it didn't so just because it didn't fall out again doesn't mean it's a bad sign. But then again they are conducting an analysis so that worries me. To continue, I still have another round of high dose chemo so it could still fall out again. So, I'm trying not to get attached to my new hair growth just in case. Too bad, it's so cute!
Two days ago a friend of mine asked me why I blog. Did I blog just to get my feelings out and if so, why didn't I just write in a journal? Or did I blog because I wanted people to read it? It's kinda hard to put into words why I blog. I've written in journals off and on for years. It's never something I stick to for very long. Actually, I usually stop because I realize I'm being too honest and I get scared someone will find my journal and read things I didn't necessarily want someone else to read. Which makes it strange that I should decide to blog instead.
The truth is that I blog because, like writing in a journal, I can be as honest as I want to be. More so than I am in person. Not that I'm a liar, lol. I mean it in the sense that, especially with the cancer stuff, sometimes I'm not very honest about my true feelings, even with some of my close friends or my family. I tend to act like everything is great, things are cool, I'm fine, nothings wrong, etc., etc. But sometimes thing's aren't fine, sometimes I'm not fine. I act much stronger than I feel sometimes. I'm trying to be brave and happy all the time, I guess to ease the fears of those around me. I don't want people to worry about me more than I know they already do. But then the times that I do worry or get scared or feel unhappy.... I'm not comfortable revealing that side of me, saying it out loud to someone. So when you ask me, I'll say I'm fine, even when I'm not. But when I write.... I am completely honest. Yes I still get scared, yes I worry about dying, yes I overreact sometimes, yes I get lonely, yes I am needier than I thought, yes I still cry about having cancer sometimes. But I won't say that out loud and I won't tell you that in person.
So why do I blog? Why don't I just write it in a journal? I don't know. If I really wanted it to be public, I would just use MySpace or at least mention it to everyone I know but I don't. And I don't think I'm less honest because it's online. Maybe I just like to type. Maybe this is my way of opening up. I used to get embarrassed when I would reread old journals (I couldn't believe I actually felt that way and actually wrote it down) but I don't feel that way when I read my old posts. I write for me, to put into words my thoughts and fears. And I don't care anymore if other people read what I write.
This blog strikes the perfect balance of personal and public. Maybe I like knowing that I can be as honest as I want to be but still hold back what I don't want to divulge. With journals, the whole point is that you're supposed to be completely honest about everything. That's why they're private. I like that I feel like I have a choice with the blog. I can say I don't have to be that honest because other people are reading it. I know, it's all psychological because I can do what I want with either medium. I'm actually going in circles with this now so I'll just stop. Suffice it to say that I am honest when I write about how I feel, especially in regards to my cancer. But I probably won't be writing about fights with my boyfriend anytime soon.
That being said, I am doing well, really! And I really am genuinely happy and fine most of the time. But when I'm not, you'll only know if you're reading my blog. Ha! I'll see who my TRUE friends are! Lol, I'm just kidding........... Whether people close to me (or strangers even) read or not doesn't bother me. Hell, my own sister hasn't read my blog! And that's ok.
Anyways, enough about that, so lately I've been listening to The Beatles Sgt. Pepper's Lonely Hearts Club Band album over and over again. God they were great! It still amazes me that I actually never got really into them until I went to college.
Last movies I saw: Remains of the Day (liked), The Lives of Others (loved!), Wayne's World ("Are you mental?!"), Alice In Wonderland (recently bought), and Cinderella (yeah I love Disney movies, and what!). Next: The Devil's Backbone (same director as Pan's Labyrinth) and Ben-Hur (lol, my mom bought the VHS for 50 cents at the library).
By the way, my new laptop has revolutionized my life. I don't even have to get out of bed to use it! One negative side affect: too much internet window shopping. I've already bought things online (a dress from anthropologie.com and a pair of shoes from urbanoutfitters.com) but it's gonna get worse unless I can get to a mall soon!
By the way, today was Day +18!
So there's been this heat wave that just doesn't seem to know that it's time to quit. It was hellish yesterday and today. What's made it worse is that it's also been kinda humid too. So can you imagine 95 degrees with humidity? It was awful I tell you. Thank God for air conditioners!
So these last couple of days I've realized that..... my hair is growing back! My hair is fuzzy with the new growth, lol. It should make me happy but instead I'm whatever over it. So this is what happened. Apparently, it was too good to be true that I didn't have any reactions from the high dose chemo so my doctor says they're investigating/doing an analysis of the chemo they gave me. Doesn't that suck? I'm like, don't do this to me! I don't even know what I would do if something had been done wrong. I really really hope that I just did really really well. Anyways, this relates to my hair because supposedly it should have fallen off again. But that's what they said about my ABVD chemo and it didn't so just because it didn't fall out again doesn't mean it's a bad sign. But then again they are conducting an analysis so that worries me. To continue, I still have another round of high dose chemo so it could still fall out again. So, I'm trying not to get attached to my new hair growth just in case. Too bad, it's so cute!
Two days ago a friend of mine asked me why I blog. Did I blog just to get my feelings out and if so, why didn't I just write in a journal? Or did I blog because I wanted people to read it? It's kinda hard to put into words why I blog. I've written in journals off and on for years. It's never something I stick to for very long. Actually, I usually stop because I realize I'm being too honest and I get scared someone will find my journal and read things I didn't necessarily want someone else to read. Which makes it strange that I should decide to blog instead.
The truth is that I blog because, like writing in a journal, I can be as honest as I want to be. More so than I am in person. Not that I'm a liar, lol. I mean it in the sense that, especially with the cancer stuff, sometimes I'm not very honest about my true feelings, even with some of my close friends or my family. I tend to act like everything is great, things are cool, I'm fine, nothings wrong, etc., etc. But sometimes thing's aren't fine, sometimes I'm not fine. I act much stronger than I feel sometimes. I'm trying to be brave and happy all the time, I guess to ease the fears of those around me. I don't want people to worry about me more than I know they already do. But then the times that I do worry or get scared or feel unhappy.... I'm not comfortable revealing that side of me, saying it out loud to someone. So when you ask me, I'll say I'm fine, even when I'm not. But when I write.... I am completely honest. Yes I still get scared, yes I worry about dying, yes I overreact sometimes, yes I get lonely, yes I am needier than I thought, yes I still cry about having cancer sometimes. But I won't say that out loud and I won't tell you that in person.
So why do I blog? Why don't I just write it in a journal? I don't know. If I really wanted it to be public, I would just use MySpace or at least mention it to everyone I know but I don't. And I don't think I'm less honest because it's online. Maybe I just like to type. Maybe this is my way of opening up. I used to get embarrassed when I would reread old journals (I couldn't believe I actually felt that way and actually wrote it down) but I don't feel that way when I read my old posts. I write for me, to put into words my thoughts and fears. And I don't care anymore if other people read what I write.
This blog strikes the perfect balance of personal and public. Maybe I like knowing that I can be as honest as I want to be but still hold back what I don't want to divulge. With journals, the whole point is that you're supposed to be completely honest about everything. That's why they're private. I like that I feel like I have a choice with the blog. I can say I don't have to be that honest because other people are reading it. I know, it's all psychological because I can do what I want with either medium. I'm actually going in circles with this now so I'll just stop. Suffice it to say that I am honest when I write about how I feel, especially in regards to my cancer. But I probably won't be writing about fights with my boyfriend anytime soon.
That being said, I am doing well, really! And I really am genuinely happy and fine most of the time. But when I'm not, you'll only know if you're reading my blog. Ha! I'll see who my TRUE friends are! Lol, I'm just kidding........... Whether people close to me (or strangers even) read or not doesn't bother me. Hell, my own sister hasn't read my blog! And that's ok.
Anyways, enough about that, so lately I've been listening to The Beatles Sgt. Pepper's Lonely Hearts Club Band album over and over again. God they were great! It still amazes me that I actually never got really into them until I went to college.
Last movies I saw: Remains of the Day (liked), The Lives of Others (loved!), Wayne's World ("Are you mental?!"), Alice In Wonderland (recently bought), and Cinderella (yeah I love Disney movies, and what!). Next: The Devil's Backbone (same director as Pan's Labyrinth) and Ben-Hur (lol, my mom bought the VHS for 50 cents at the library).
By the way, my new laptop has revolutionized my life. I don't even have to get out of bed to use it! One negative side affect: too much internet window shopping. I've already bought things online (a dress from anthropologie.com and a pair of shoes from urbanoutfitters.com) but it's gonna get worse unless I can get to a mall soon!
By the way, today was Day +18!
Saturday, September 1, 2007
What Not To Do On A Friday Night
Definitely definitely not read the blogs of people who have DIED of Hodgkin's, definitely definitely not.
Why didn't I just watch Jimmy Kimmel?
So yeah, what's the deal man? I hate that either I hear about the people who went into remission after 2 months of chemo (Stage I or II) or I hear about the people who have relapsed 2-3 times, even after their transplants! Or worse, DIED!
It all started innocently enough. I went to my favorite cancer blog, Cancer is My Bitch (www.cancerismybitch.com/), and after rereading some of the past posts (I never get tired of them, they're either funny or deep) I decided to check out some of the linked blogs on his page. Tell me why the second one I go to is like, "So and so died peacefully of Hodgkin's with their family by their side." So of course I decided to read their blog. And guess what. They were only 23 and they'd received treatment at City of Hope too! I was like, Oh....My....God.
Then I was like, what the hell am I doing? Am I really freaking myself out like this, on a FRIDAY NIGHT! I needed to blog it out.
Anyways, today was another long day spent at the hospital. I had blood work at 10am and an appointment with my transplant doctor at 11am. However, my Hickman has been causing trouble lately. They used to be able to draw blood from it but for some reason they haven't been able to the last 3 times they've tried (once today, twice during my hospital stay). Apparently there might be tissue buildup blocking it so today I had to get medicine for it and it took a while to order and then after, it took an hour for it to work. Before that I had an EKG and my mom and I grabbed lunch while we waited for the medicine. We got to the hospital at 9:50am and didn't leave until 3:30pm. I complained about it being a long day and then realized, almost every time we come it's a long day, so actually, it wasn't that unusual. And actually, it was better than the last day of my stem cell collection. That day we'd gotten to the hospital at 8am and didn't leave until 5pm because I also ended up getting a blood transfusion too, my first ever.
I just realized I never mentioned that. Yeah, the last day of my stem cell collection (it was my 8th day) I also had to get a blood transfusion because my red blood count had been too low. Oh, that day I flipped out. Mind you, I've given blood before but the thought of getting a stranger's blood kinda grossed me out. I know, weird. So I was like, oh my God I'm getting some stranger's blood! I don't know anything about them! What if they're weird? What if it's some pimply high schooler's blood? What if all of a sudden I pick up someone else's personality because of their blood!!! I practically threw my hands up in the air and ran around in circles screaming. But of course I was fine and the stranger's blood has not caused any trouble. But my poor sister had to wait in waiting rooms that whole day.
My sister is still here, she decided not to leave until September 9th. She will have been home for over a month by then, almost a month and a half. I've said it before, I am going to miss her so much when she leaves. I think she feels better knowing that she's done more cancer-related things with me. Each time she comes home I'm on a break from treatment. Or she leaves right before I have surgery. This is the first time that she's been home and I've been in the middle of treatment so she's been able to come with me for just about everything: doctor's appointments, stem cell collections, and my hospital stay. Great, now I realized she won't be here for my second and supposedly longer hospital stay........
I never really felt lonely when I was at the hospital, only 1 day and it was because nobody had spent the night with me for 2 days straight. By the 3rd night I did feel kinda lonely. Thank God my mom called me that night, I think she heard it in my voice even though I kept insisting I was fine, so she came over and I felt better. I don't think I realized until then how much I really need my family's physical presence sometimes. I mean, that night it was already late but knowing that my mom was in the same room as me and would be for the rest of the night, made me feel not as lonely anymore. It's times like that when I don't feel 27.......... more like 7.
My mom......... what would I do without her?
Anyways, before I forget to mention it, my 2nd transplant was moved up. Instead of going in Oct. 4th, I'm now going in Sept. 13th, so in about 2 weeks. I know, again! But this is good, no sense in waiting. So..............this is it! The last one hopefully!
Oh and............ this means I won't have time to get my license. So I am hereby releasing myself from my oath to never drive again if I didn't get it in Sept. Uh oh, my grand master plan is falling apart! But the license is just going to have to wait, I just don't think I can do it before the 13th. But maybe my permit??? We'll see...........
Ok well, it is now 2:30am, time for bed!
Why didn't I just watch Jimmy Kimmel?
So yeah, what's the deal man? I hate that either I hear about the people who went into remission after 2 months of chemo (Stage I or II) or I hear about the people who have relapsed 2-3 times, even after their transplants! Or worse, DIED!
It all started innocently enough. I went to my favorite cancer blog, Cancer is My Bitch (www.cancerismybitch.com/), and after rereading some of the past posts (I never get tired of them, they're either funny or deep) I decided to check out some of the linked blogs on his page. Tell me why the second one I go to is like, "So and so died peacefully of Hodgkin's with their family by their side." So of course I decided to read their blog. And guess what. They were only 23 and they'd received treatment at City of Hope too! I was like, Oh....My....God.
Then I was like, what the hell am I doing? Am I really freaking myself out like this, on a FRIDAY NIGHT! I needed to blog it out.
Anyways, today was another long day spent at the hospital. I had blood work at 10am and an appointment with my transplant doctor at 11am. However, my Hickman has been causing trouble lately. They used to be able to draw blood from it but for some reason they haven't been able to the last 3 times they've tried (once today, twice during my hospital stay). Apparently there might be tissue buildup blocking it so today I had to get medicine for it and it took a while to order and then after, it took an hour for it to work. Before that I had an EKG and my mom and I grabbed lunch while we waited for the medicine. We got to the hospital at 9:50am and didn't leave until 3:30pm. I complained about it being a long day and then realized, almost every time we come it's a long day, so actually, it wasn't that unusual. And actually, it was better than the last day of my stem cell collection. That day we'd gotten to the hospital at 8am and didn't leave until 5pm because I also ended up getting a blood transfusion too, my first ever.
I just realized I never mentioned that. Yeah, the last day of my stem cell collection (it was my 8th day) I also had to get a blood transfusion because my red blood count had been too low. Oh, that day I flipped out. Mind you, I've given blood before but the thought of getting a stranger's blood kinda grossed me out. I know, weird. So I was like, oh my God I'm getting some stranger's blood! I don't know anything about them! What if they're weird? What if it's some pimply high schooler's blood? What if all of a sudden I pick up someone else's personality because of their blood!!! I practically threw my hands up in the air and ran around in circles screaming. But of course I was fine and the stranger's blood has not caused any trouble. But my poor sister had to wait in waiting rooms that whole day.
My sister is still here, she decided not to leave until September 9th. She will have been home for over a month by then, almost a month and a half. I've said it before, I am going to miss her so much when she leaves. I think she feels better knowing that she's done more cancer-related things with me. Each time she comes home I'm on a break from treatment. Or she leaves right before I have surgery. This is the first time that she's been home and I've been in the middle of treatment so she's been able to come with me for just about everything: doctor's appointments, stem cell collections, and my hospital stay. Great, now I realized she won't be here for my second and supposedly longer hospital stay........
I never really felt lonely when I was at the hospital, only 1 day and it was because nobody had spent the night with me for 2 days straight. By the 3rd night I did feel kinda lonely. Thank God my mom called me that night, I think she heard it in my voice even though I kept insisting I was fine, so she came over and I felt better. I don't think I realized until then how much I really need my family's physical presence sometimes. I mean, that night it was already late but knowing that my mom was in the same room as me and would be for the rest of the night, made me feel not as lonely anymore. It's times like that when I don't feel 27.......... more like 7.
My mom......... what would I do without her?
Anyways, before I forget to mention it, my 2nd transplant was moved up. Instead of going in Oct. 4th, I'm now going in Sept. 13th, so in about 2 weeks. I know, again! But this is good, no sense in waiting. So..............this is it! The last one hopefully!
Oh and............ this means I won't have time to get my license. So I am hereby releasing myself from my oath to never drive again if I didn't get it in Sept. Uh oh, my grand master plan is falling apart! But the license is just going to have to wait, I just don't think I can do it before the 13th. But maybe my permit??? We'll see...........
Ok well, it is now 2:30am, time for bed!
Tuesday, August 28, 2007
Home Sweet Home
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!
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!
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.
Monday, July 9, 2007
Oh They Got Me! The Chills, They Got Me!
You know, you never realize how much hair you have until it all starts falling out. My hair literally all fell out in a span of 3 days. I won't lie, I did freak out the first 2 days. It was just sooooo much hair. I was pulling clumps out every time I touched my head and every morning my pillow was covered in hair. My brother Eduardo (who just recently shaved his head) swears I'm trying to copy him. I must say though, the breeze feels good on my bald head.
That's the thing though, it fell out so fast, I only had like 2 days to mourn it before it was all gone. Then it was pointless to cry over something that was done. I liked that. The first time my hair fell out, it thinned out slowly over 6 agonizing months. And even then I didn't have any bald spots. This was done and over in under 5 days. I don't have to worry about it or think about it anymore.
These last 5 days have been crazy. My hair fell out, I got an eye infection, and I developed another infection that my doctors think is from my port. The eye infection is actually starting to go away now (I was scared it was pink eye but it wasn't), the doctor gave me a prescription antibiotic eye cream that's really working. Of course I had to deal with the pink eye jokes first but at least it's going away.
Then came the unknown infection. The fever and chills started on Friday night. I tried to ignore it because I thought I was just tired but by Saturday night I realized it wasn't going away. By the time I got to the ER I had a fever of 103 and was shivering from the "cold." The nice thing about being a chemo patient is that they don't mess around! Usually it's first come-first serve (I can't decide if I agree with that, I think more critical patients should be seen first but then who's considered more important? tricky dilemma), but being that I'm a chemo patient I was helped right away. 4 hours later they sent me home with antibiotics, instructions to keep taking Tylenol if the fever persists, and with no idea as to what I might have.
So since early Sunday, I've been taking the Tylenol because the fever is not going away. The worst part is the chills. It feels as if the cold has settled deep into my bones and refuses to leave, no matter how much clothing I put on or how many covijas I put on top of me. It just drains my energy. Because every test has come back ok they think it might be my port so they're taking it out tomorrow. I had gotten used to the little guy, I'm actually going to miss it. Isn't that weird? I was going to have the last cycle of chemo before the transplant this week but because of the infection, it's being delayed for a week. And I don't regret it! Although, the whole month had been carefully planned out, this pushes everything back so now I have to change all the appointments.
I swear, all in 5 days, the things that can happen. I was surprised I got sick. They warned me that I might but I guess I never actually believed it until it happened. Just like my hair.
Aside from this, I saw 2 movies that I was glad I saw back-to-back: All the President's Men and Dick. I really liked All the President's Men. It had Robert Redford and Dustin Hoffman playing the 2 reporters from The Washington Post that exposed the Watergate scandal. Then I watched Dick and it was a funny counterpoint. In it, Kristin Dunst and Michelle Williams play 2 girls who go to work for President Nixon as his dog walkers and become involved in the Watergate scandal. I don't think I would have liked it as much had I not seen All the President's Men first. I'm not really saying much about this, I know, but suffice it to say that I enjoyed both movies.
I can't wait to watch the new Harry Potter movie! I have to wait though, until this infection goes away. Hopefully by next weekend!!!
So I read this quote by Roger Ebert when he reviewed Apocalypse Now (which is next on my list):
"If we are lucky, we spend our lives in a fool's paradise, never knowing how close we skirt the abyss."
Word.
That's the thing though, it fell out so fast, I only had like 2 days to mourn it before it was all gone. Then it was pointless to cry over something that was done. I liked that. The first time my hair fell out, it thinned out slowly over 6 agonizing months. And even then I didn't have any bald spots. This was done and over in under 5 days. I don't have to worry about it or think about it anymore.
These last 5 days have been crazy. My hair fell out, I got an eye infection, and I developed another infection that my doctors think is from my port. The eye infection is actually starting to go away now (I was scared it was pink eye but it wasn't), the doctor gave me a prescription antibiotic eye cream that's really working. Of course I had to deal with the pink eye jokes first but at least it's going away.
Then came the unknown infection. The fever and chills started on Friday night. I tried to ignore it because I thought I was just tired but by Saturday night I realized it wasn't going away. By the time I got to the ER I had a fever of 103 and was shivering from the "cold." The nice thing about being a chemo patient is that they don't mess around! Usually it's first come-first serve (I can't decide if I agree with that, I think more critical patients should be seen first but then who's considered more important? tricky dilemma), but being that I'm a chemo patient I was helped right away. 4 hours later they sent me home with antibiotics, instructions to keep taking Tylenol if the fever persists, and with no idea as to what I might have.
So since early Sunday, I've been taking the Tylenol because the fever is not going away. The worst part is the chills. It feels as if the cold has settled deep into my bones and refuses to leave, no matter how much clothing I put on or how many covijas I put on top of me. It just drains my energy. Because every test has come back ok they think it might be my port so they're taking it out tomorrow. I had gotten used to the little guy, I'm actually going to miss it. Isn't that weird? I was going to have the last cycle of chemo before the transplant this week but because of the infection, it's being delayed for a week. And I don't regret it! Although, the whole month had been carefully planned out, this pushes everything back so now I have to change all the appointments.
I swear, all in 5 days, the things that can happen. I was surprised I got sick. They warned me that I might but I guess I never actually believed it until it happened. Just like my hair.
Aside from this, I saw 2 movies that I was glad I saw back-to-back: All the President's Men and Dick. I really liked All the President's Men. It had Robert Redford and Dustin Hoffman playing the 2 reporters from The Washington Post that exposed the Watergate scandal. Then I watched Dick and it was a funny counterpoint. In it, Kristin Dunst and Michelle Williams play 2 girls who go to work for President Nixon as his dog walkers and become involved in the Watergate scandal. I don't think I would have liked it as much had I not seen All the President's Men first. I'm not really saying much about this, I know, but suffice it to say that I enjoyed both movies.
I can't wait to watch the new Harry Potter movie! I have to wait though, until this infection goes away. Hopefully by next weekend!!!
So I read this quote by Roger Ebert when he reviewed Apocalypse Now (which is next on my list):
"If we are lucky, we spend our lives in a fool's paradise, never knowing how close we skirt the abyss."
Word.
Monday, July 2, 2007
To My Body
You know, at first, I looked at my body and I wondered, "How could you betray me? How could you let this happen?" I've had this body all my life, and it decides to let me down.
But then I realized, this body, my body, is also strong and it has taken it's fair share of beatings. This body has withstood everything I have done to it. And yes, it's not perfect and it will have scars, but those scars will be a testament of its survival and tenacity.
I felt like that about my hair too. It did make me sad when I would look at the clumps in the shower. But not all of it fell out and I admired the hair that stayed, that didn't give in.
So this body, my body, will continue to exercise it's will to live. Yes it'll be weak sometimes, but I know that this body doesn't give up easily. This body has tried its best to protect itself and will continue to try its best.
So listen body, I know we'll make it through this all right. Don't you give in to the effects of the drugs, I need you to keep it together. Remember, this cancer is suppose to be the pussy cancer. We don't want to look back a year later and be embarrassed at how weak we were. So we gotta stick together and stay strong.
I promise I'll try to treat you better.
But then I realized, this body, my body, is also strong and it has taken it's fair share of beatings. This body has withstood everything I have done to it. And yes, it's not perfect and it will have scars, but those scars will be a testament of its survival and tenacity.
I felt like that about my hair too. It did make me sad when I would look at the clumps in the shower. But not all of it fell out and I admired the hair that stayed, that didn't give in.
So this body, my body, will continue to exercise it's will to live. Yes it'll be weak sometimes, but I know that this body doesn't give up easily. This body has tried its best to protect itself and will continue to try its best.
So listen body, I know we'll make it through this all right. Don't you give in to the effects of the drugs, I need you to keep it together. Remember, this cancer is suppose to be the pussy cancer. We don't want to look back a year later and be embarrassed at how weak we were. So we gotta stick together and stay strong.
I promise I'll try to treat you better.
It's My Life and I'll Shop If I Want To!
I realized today how much going shopping makes me feel good. I used to say it was because it distracted me. I like shopping, especially alone, because my mind is free of all other thought except for those crucial fashion choices. It was my time to get away, to be alone. Just shoes, purses, dresses, sunglasses, etc. But now, shopping is not just a distraction, it's an affirmation of normalcy and life.
I am normal and I still love shopping! Cancer cannot take that away from me. And I will use those things I purchased when I go out to do things just like everybody else. And when I can't leave my bed, these items will stay in the closet, waiting for the day when I can take them out and use them again. Months later, I will still be alive and I will use my purchases again! When I shop now, it's not just a distraction, it's me saying, "I am still the same Maria. And even when I can't wear my sunglasses because I'll be in the hospital for 3 weeks, I'll use them on the car ride home. And I'll use them when I fell good enough to leave the house." Ha! Cancer cannot make me stop spending my money frivolously.
You like how I just justified going shopping? So here's what I bought: underwear sets from Victoria's Secret, a stripped linen dress from Forever 21, a really cool green top from Anthropologie, and a brown leather tote from Banana Republic. The purse is the only thing I actually feel guilty about because it was the most expensive. Granted it's cool, holds all of my stuff (without being too big), and was on sale (major plus)....... but still. Depending on how guilty I feel, I'll either keep it or return it.
I'm always torn between feeling bad and feeling lucky. Let me break it down.
Feel Bad Because:
I think shopping helped.
I am normal and I still love shopping! Cancer cannot take that away from me. And I will use those things I purchased when I go out to do things just like everybody else. And when I can't leave my bed, these items will stay in the closet, waiting for the day when I can take them out and use them again. Months later, I will still be alive and I will use my purchases again! When I shop now, it's not just a distraction, it's me saying, "I am still the same Maria. And even when I can't wear my sunglasses because I'll be in the hospital for 3 weeks, I'll use them on the car ride home. And I'll use them when I fell good enough to leave the house." Ha! Cancer cannot make me stop spending my money frivolously.
You like how I just justified going shopping? So here's what I bought: underwear sets from Victoria's Secret, a stripped linen dress from Forever 21, a really cool green top from Anthropologie, and a brown leather tote from Banana Republic. The purse is the only thing I actually feel guilty about because it was the most expensive. Granted it's cool, holds all of my stuff (without being too big), and was on sale (major plus)....... but still. Depending on how guilty I feel, I'll either keep it or return it.
I'm always torn between feeling bad and feeling lucky. Let me break it down.
Feel Bad Because:
- I have cancer.
- My hair is super short.
- I don't work, which means I have less money.
- I hate chemotherapy.
- I worry that I'll have a hard time with the details of life after treatment. For example, getting another job (should I tell them?) and what if I get another job, will they have medical insurance that will label me uninsurable?
- What if I get rid of it and it comes back, or worse, I get something else?
- Boo, no more drinking :(
- I worry that I overreact.
- The people I love worry about me.
- I might become infertile (I never did the egg freezing business).
- I have Hodgkin's (the most treatable and curable with 80-85% survival rates).
- For the most part, I FEEL good, if not great. The side affects have been manageable.
- I still have hair.
- I get disability (and obviously enough to pay my bills and still shop, lol).
- I have a great support system of family and friends.
- So Kaiser isn't Ceders Sinai, it's still covered the bulk of my cancer costs. I feel lucky to have health insurance.
- I don't work, which means I have time to sleep, watch movies, spend quality time with my family, and blog.
- People don't expect me to do anything other than rest.
I think shopping helped.
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