hello again

it has been a while since i posted, mostly because i've done a pretty good job of kicking cancer's ass and i haven't had any new news for anyone in a while. ok, i'm lying. i have honestly just been to lazy to post.

well here is a quick update.

1) my petscan came back all clear, yay! i can finally get some much needed rest and relaxation without having to see a doctor every other day now. i am feeling great, except that my immune system is still weak and my body isn't back to normal so i am still experiencing many off days.

2) i finally received disability payments! about friggin time...but at least i know now that the government is doing something right with the money i've given them for the last god knows how many years. now i can pay off the bazillion copayments and other crazy medical bills i haven't been able to pay yet.

3) i gained back all the weight i lost...and then some. so i at least look healthy again, but i'm having trouble fitting some of my clothes now. maybe some that disability money can help me pay for a membership to the NYU gyms...hmmm....

last but not least, i wanted to share an interesting article about funding for a cure for cancer that i thought was an interesting read.

http://www.nytimes.com/2009/04/24/health/policy/24cancer.html?_r=1&src=twt&twt=nytimes

oops!

i know i haven't written in a while despite so much happening. for those of you who don't already know, i am technically in REMISSION! for the most part, i feel amazing, except that i had the worst petscan experience ever last night.

i'm not sure if it was because i ate so many carbs the night before (the nurses asked me to not eat 6 hours before the procedure and remain on a low carb diet the day before... but that's really hard to do when you're at a birthday party and there are cupcakes and cream puffs in plain sight waiting to be eaten), but i got disgustingly sick. after my shot of radioactive isotopes and chugging down 2 mixed berry barium shakes, my stomach went all to hell and i was sick for the next 7 hours. i want to believe that the cupcakes and cream puffs were worth it...but really, it wasn't. i haven't felt as miserable as i was last night in a long ass time.

anyways, i finally succeeded in downloading the pictures off of my camera onto my comp and will post the pictures of the radiation machine soon. a lot of people have asked me what it looks like and what exactly happens, so i hope i can explain well enough through the pictures i took. until next time...

radiation graduation

i graduated! again! this time from radiation. i even have a certificate to prove it (really! the staff at Nassau Radiologic Group gave me one). by the way, NRAD ROCKS!!! thank you melanie and tom for being such awesome radiation technicians and always putting a smile one my face every time i came in. don't take this personally, but i hope i never have to see you guys again! i just don't want to have radiation ever again! but if i do, i actually do hope i get to see you two and dr. pollack who has been MIA for the past 2 days (at least whenever i'm there).

and just to let you all know, i unfortunately have not gained any super powers, and luckily no extra limbs. i also have yet to show you the radiation machine that i got treatment from every day for the past 4-5 weeks, but i still can't find the damn cable i need to connect my camera to my mac. i wish my camera had bluewire...

by the way, celebration to come soon.

statistics

i decided to look up some statistics about cancer tonight. i was curious to see how i related to the information (as an asian-american woman in her 20's who has non-hodgkins lymphoma) and here is what i found courtesy of the American Cancer Society - www.cancer.org

- there was an estimated amount of 1.4 million cases of cancer diagnosed in the US in 2008

- out of those 1.4 million diagnosed cases, more men were diagnosed than women (men - 745,180 : women - 692,000)

- out of the estimated cases of cancer in the US in 2008, non-hodgkins lymphoma made up 4%

- between 2000-2004, asians and pacific islanders have the second least amount of incidences of cancer amongst other races and ethnicities

here is a particularly scary statistic

- approximately one in three women in the United States will develop cancer over her lifetime. The leading sites are breast, lung, and colon and rectum.

ONE IN THREE WOMEN!

- the probability of developing non-hodgkins lymphma from the previous statistics is one out of 53.


i was trying to find more statistics about people my age and around my age developing cancer, and if i find anything more, i will definitely post it up.

something that rhymes with remission...

i feel completely off center today. it all started after i woke up from a strange dream where i got a phone call from my best friend jess who recently passed away. she was talking to me about how someone's pet something, named fang, was still alive. but the strangest thing about the dream wasn't about fang, it was that she thought my name was roberta or maybe that she was speaking to someone named roberta. i don't even know anyone named roberta. but maybe jess does and that she's trying to give me a sign from beyond to give to roberta??? at least she sounded happy when she was talking to me and that in turn made me a little bit happy too.

maybe what ruined my day was hearing jess's voice in my head and realizing that i will never truly hear it again . every so often i get those days when i feel completely defeated, and i guess this is just one of those days.

it is another day of feeling like i've accomplished nothing. i'm sure at this point that this blog is not sounding very inspiring to those who have cancer, but the truth is, there will always be ups and downs and it's totally ok sometimes to be down.

i just got through my 13th treatment today. luck 13! and if you have all been counting as impatiently as i have, that means i only have 5 more left. FIVE!!! and if you haven't already figured out, this also means that i will be in remission by next week! at least i hope i will be. i have to get the thumbs up from my docs first.

i hope on celebrating...not sure when, but as soon as i find out i am in remission. it was decided by me and my friend stephanie that the name of this celebration should rhyme with remission, but so far the only word that we both considered cool was "ignition." but remission ignition, nor ignition remission really makes any sense. so if anyone knows a really cool word that rhymes with remission that would be a good name for my celebration, please leave me a comment.

oh and if you're have trouble leaving me a comment, e-mail me at fay.serafica (at) gmail.com. i hope you all know that the (at) means to put @.

farewell my metaport

my metaport is finally gone! woooo!!! at first i welcomed having one, but now i'm glad that it's finally out of my body. i probably wouldn't have minded keeping it a bit longer if it wasn't giving me strange sharp pains every so often.

i want to write more, but i feel pretty nauseous from post-surgery pain meds...

so here's an old post from my facebook notes -

a new scar

Wednesday, September 10, 2008 at 8:45pm

so it seems i will be stuck at north shore for quite a bit longer. tomorrow i will have to have what doctors call the "chamberlain procedure." basically they're gonna slice me open in my chest (unfortunately in my tattoo area) and try to remove better tissue samples.

it turns out that harvard came up with the same results in one day that it took north shore's pathology department a week to figure out - that the tissue samples from my biopsy were not enough to properly diagnose me. so i'm back to square one with not knowing whether i have hodgkins or not.

sooooooo....i dunno....i think my brain got fried after my last fever this afternoon.....

so far, so good

sorry for not posting anything in the last few days. i haven't been taking to my best friend's death very well and i'm still in disbelief. i still think that jess is going to call me any time now and ask me how i'm doing. what upsets me most is that i didn't get to share finally reaching remission with her. but i guess she's watching over me, wherever she may be.

tomorrow i will be having surgery to finally remove my metaport. jess had one too which is what led to so many complications to her health recently. when i started to feel strange pains in the area of my metaport, i would tell jess that they were sympathy pains because her port had gotten infected which is why she was in and out of the hospital so much in the past few months. i can't wait to get my metaport out. not only do i still feel strange pain there sometimes, but it always reminds me of jess.

and for those of you who have no idea what a metaport looks like from the outside, here are some pics of mine (it's the weird round lumpy thing on the left side of my chest) -

LYLAS

my head is so far from writing a decent post right now so i thought i would just mention that i will be leaving for arizona on wednesday to attend jessica's wake and funeral and will be back on sunday. i unfortunately will be missing 3 days of radiation, but seeing jess one last time and being there for her family is far more important to me right now.

goodbye jess

last night, my best friend, jessica yeager, passed away. i can't bring myself to say much more right now other than i love you jess, and i will miss you more than words can ever describe...

3 down 15 more to go

today i decided to write an early morning blog...or somewhat early morning blog, before radiation because i usually feel pretty dead after the procedure. i had my third dose yesterday and have only 15 more to go. if i don't miss a day, i should be finished by the second or third week of february.

i had to cancel my pre-admission testing for my metaport removal yesterday due to the crazy weather which means i had to push the surgery till next thursday. at least now i have a little more time to try to take a pic of my metaport and post it online before i say goodbye to it forever.

ok, my brain still seems pretty fried, so here's another old entry from my facebook notes -


tomorrow tomorrow tomorrow

Tuesday, September 9, 2008 at 4:08pm

So I'm still here...in North Shore Hospital...waiting for results...

The pathologists could not determine from the tissue samples of my biopsy whether i actually have Hodgkins or not. So my doctor fedex'd overnight my tissue samples to Harvard Medical Center, whom they claim are the best of the best, to have pathologists there look at them. Hopefully I will have answers tomorrow.

For the past week they have been saying tomorrow, tomorrow, tomorrow. I will get my results tomorrow...I will be getting chemo tomorrow...I will be able to leave tomorrow... but tomorrow just keeps on coming, and I am still here...waiting...for them to just tell me that I have cancer.

It still hasn't really hit me yet. I know and can obviously feel that something is wrong, but I am still in disbelief. Cancer is something that I thought i would never have to face in life...or at least not at this age. My 20's have proven to be a life struggling experience; from breaking my neck in car accident in 2001, to this. What next?

If the pathologists at Harvard cannot determine what I have from the tissue samples they received, I'm going to have to undergo a media stenoscopy (I think I spelled that right). Basically I will have to be cut open again in order for them to retrieve a better tissue sample from my tumor. I think i'm more worried about my tattoo being destroyed than actually being hurt myself.

Well that's my life so far...just waiting...

snoozin and losin

today was my first day of radiation therapy and i'm already feeling the side effects. i feel absolutely lethargic right now and could probably fall asleep before i finish writing this sent...zzzz....

ok ok, i'm still awake, but not by much.

this morning was pretty crazy. i got around 10 phone calls before noon all from nurses and doctors explaining to me what the rest of my week will be looking like and confirming my gazillion appointments. not only do i have radiation every day this week, but i'm finally getting my metaport out on thursday. woot!

but blah blah blah about my morning. i should be talking about my radiation experience. so what was it like? well, i had to go through the whole lying on my back with my arms raised flat behind my head and my bare chest hanging out for all the male technicians to see again in a cold, cold room. then there's the crazy radiation machine that hovers and moves in semicircles around me shooting its invisible rays. i also got some weird taste in the back of my throat...can't really describe what it's like except that it's similar to the metallic taste you get in your mouth when you get injected with radioactive isotopes for a catscan. the whole process actually takes only 7-10 minutes and it really does feel that short. i was up and out in no time but a whole lot weaker and slightly dizzy.

i'd write more, but i'm seriously about to snooze out this time. zzzz....

and now let me get back to battlestar galactica and knitting

i was going to write a bit about my interesting night last night which ended up with me being stuck out in the cold and locked out of vlad's warehouse 3am in the morning, but i'm too busy watching battlestar galactica (thanks will for getting me addicted to yet another tv show) and knitting of course.

so here is my second entry from my notes on facebook about me seeing waaaay too many doctors in waaaay too short a time.

3 doctors in 5 1/2 hours

Thursday, August 21, 2008 at 10:51pm

and still...no results.

so today i saw an internist, cardiologist and lung specialist. the internist told me there was definitely something wrong with my lungs and also wanted me to get my heart checked. so i saw a cardiologist, got a heart sonogram, and was told that i have extra fluid in the lining of my heart. he told me that this is probably because i have an infection somewhere in my body, most likely from my lungs. he didn't make it out to be anything life threatening, but extra fluid in the lining of my heart still doesn't sound so pleasant.

next i see the lung specialist. after spending almost half an hour doing breathing test after breathing test he tells me that my lungs are abnormally small. not sure what that means other than its obviously not helping me breathe so well, but it doesn't sound good. he's worried that i might have a blood clot in my lungs so now i have to get myself a catscan...on monday.

sooooo...i'm still here, coughing my mini lungs out wondering what the hell is wrong with me...

bananas

yesterday was a pretty crazy day which is why i didn't get to post anything. first off i had 2 doctors appointments. one at 9am in which i waited 3 hours to get my metaport checked out. second, i decided to go out later that night and had an interesting time. but before i get to that, let me start off with the metaport problem.

i've been experiencing strange sharp and stabbing pains in my metaport area and just wanted to make sure i didn't have an infection or something. it turns out i might have busted one of the sutures from the surgery and my doc told me that i just need to wait the pain out. it doesn't hurt so bad now, but i'm still afraid of moving my left arm the wrong way which is what caused the pain the first place.

i also saw my radiation oncologist at 1pm so they could once again take films of my chest before they start radiation on me next week. it's a pretty embarrassing procedure which makes me believe that radiation will be too. basically i lie down flat on my back with my arms raised flat backwards and my hospital gown opened from the waist up with my bare chest exposed. it makes me feel really vulnerable and slightly uncomfortable especially when there is a male technician around. i realized though this is what women with breast cancer must go through as well. at least i'll only have to be in that weird position for 15 minutes long compared to sitting in a chair for 5 hours getting chemo.

so the second part of my story begins with me trying to enjoy myself a little before i'm once again knocked out by radiation. i'm staying in brooklyn just for the weekend cause queens is making me seriuosly depressed. i went out to the winkel and balktick's cotillion event at the glasslands which was pretty friggin awesome. it was my first time at the space and i really enjoyed the setup. i met some really awesome people too (finally! i've been super socially awkward lately, but slowly getting over it). but when meeting knew people there always comes a lot of issues especially when it comes to personal space.

i generally have to stay away from weaving through large crowds so i spend most of my time cooped up in a corner where i know i won't be at risk of being near anyone who might be sick or could bump into my metaport. i also have to tell people that they need to talk a distance from me because i have a weak immune system and cannot afford to catch their germs and get sick. at that point, i usually have to spill the beans that i have cancer and that i'm not a hypochondriac in order to not make people feel awkward. people seem to be more understanding when i'm just bluntly up front.

my metaport is coming out next week so hopefully some of these weird space issues can be resolved. bah...ok...i think i'm writing too much so i'll stop right here.

the beginning

here is my day, short and sweet - it sucked. today is a down day...it happens.

but here it is, like i promised, the beginning of my story about cancer.

note to self
Saturday, August 16, 2008 at 10:34am

this note is not really to myself. it is more like a note to all of those who might be wondering what the hell has happened to me.

it was only 2 weeks ago that i had realized that the physical and mental decline that i have been experiencing in the past 2 1/2 months was a little more serious than i had thought. since this realization, i've seen my doctor 3 times in the past 2 weeks, landed myself in the ER twice, and have a list of specialists i need to see. i have taken so many blood tests that i feel that my anemia is almost being caused by so much blood loss, but even after test after test, doctors still have not received any conclusive results.

what is wrong with me? i don't know. my symptoms keep on growing and the extent as to how long i have felt like this is puzzling my doctors. i'm not contagious. whatever i have is solely in me.

to all those that i've tried to make plans with to hang out, i apologize for constantly having to cancel. there are times when i feel fine and think that i will make it, only to realize that after walking half a block i am already feeling out of breathe and dizzy. i miss everyone and wish that i could see you all again soon.

the good, the bad, and my birthday

the good:
i have goiter! not thyroid cancer! woooooot! not that goiter is necessarily a good thing, but hell, it's better than cancer. from what i understand i'm not getting enough salt in my diet. i guess that means i can eat all the bacon i like guilt free. or at least till i get a heart attack.

the bad:
i thought my visit to the doc today would be as simple as a metaport flush. and of course it wasn't. my doc came into the room i was waiting in with a pretty concerned face and i knew that shit was going to be good.

since monday evening i've been experiencing really painful, sharp pains during random moments throughout the day around my metaport area. dr. donnelly was poking around it during my check up and it seems pretty tender. he says it's possible that i might have an infection and if at any point throughout today and tomorrow i have the chills, a fever, or night sweats, to call him immediately. so on friday i've been scheduled to go back to the last place i wanted to be - northshore hospital, in order to get some testing done on my port.

as if my bad news wasn't bad enough, i just found out that my best friend, jess, also arrived back in the ER on my birthday. her metaport has been infected for a while and she's been in and out of the hospital for weeks now. i spoke with her today and told her that i might be feeling some sympathy pains for her considering that its possible now that i might have an infection as well. i just hope she's ok and that we both get better soon.

my birthday:
two words - deliciously sexy! if you went to my birthday dinner at monkeytown you'd understand. thanks for all those who came out. as for those of you who didn't come because the inauguration was way cooler, i totally understand because i've accepted the fact that obama is way cooler than me. way way cooler :P


oh and i know i said i was going to post the beginning of my facebook notes about cancer here today, but i decided i wrote too much already so i'll do that tomorrow. here are some of my birthday photos from sarah -

it's not too late at 28

i've been telling myself for years that i would do this, and at 28 on my birthday i finally gave in and decided to start my own blog. as if my notes on facebook weren't enough, i felt that since i will never actually publish my own book about my crazy experiences in the last year (as was suggested by many friends), i figured a blog should suffice. what crazy experiences you might ask? um...how bout i start with having been diagnosed with non-hodgkins lymphoma in september 2008. for those of you who have no idea what the heck non-hodgkins lymphoma is, it's cancer. yes cancer.

i wanted to start off simple today so every day beginning tomorrow, i will start posting my past archives from my facebook notes about my experiences with having cancer along with some thoughts for the day. i hope by opening up my life to a more public atmosphere i will have the opportunity to reach those who have similar experiences or those who want to know more about having cancer at a young age.

i welcome questions as well as comments even if it's just a simple hello. thanks for reading :)