Have You Been Having Chemopalooza Withdrawls?

Hi everyone, just a little update on what's been going on -- I've been avoiding thinking about my scans and all of the what-ifs, that's why I haven't posted in a few days. So here's my update:

I'm STILL waiting on getting approved for long term disability, so yeah, I'm broke.

After talking with Tina last week, I decided that I should go see Dr. Fisher at Dana Farber, just to hear what he says about my scans, and see what he thinks about the potential for it to be thymus rebound since many people on the lymphoma message board have mentioned it. After asking Tina if the spot is in the area of the thymus, which she said it was, I have gained a little more hope that it's just some inflammation. My appointment is for Tuesday the 7th.

I've had a few beers this week, and dealt with them perfectly fine! I'm still having lots of muscle aches, especially in my back, and I've been feeling crappy ever since I got back from the Dr's on Monday. I was hoping to be in some sort of work out routine by now, but this whole relapse scare has demolished my motivation. I need to do some swimming, maybe tomorrow I can go. I don't want to go to the gym with lots of people, or bump into people I know, so I'm just avoiding it -- I know, I know, I need to get over it!!!

Tomorrow I'm going to the dentist for the first time in a year! I played the cancer card and they found room to squeeze me in :) My next stop was having my uncle call for me, since he's friends/neighbors with the dentist, and then of course, have him also play the cancer card - but unnecessary, hooray! I have a feeling I'm going to have a lot of fillings to get, but cross your fingers for healthy teeth! Oh and, I'm happy to report that I'm finally able to drink cold juice straight out of the glass, or even an ice cold beer out of the bottle, without a straw!! I still have to be careful, but the teeth are MUCH better!

It seems like I'm going to go ahead with chemopalooza next weekend. I guess everyone is right, I should at least celebrate the end of chemo, and there's no better time to surround yourself with friends than now. So bring on the entertainment! Oh and if you have any suggestions for fun things to do at chemopalooza, let me know :)

Oh yeah, and my eyebrows have almost totally filled in!!! There are still weird blondish hairs, especailly the ends of the hairs, but still, they're MUCH better!

I think that's all I have to report for now. I'll write more soon. XO

Some Pictures

I just thought I would post some pictures that I forgot to post earlier, mostly I'm just doing this to keep myself busy :)

Me and Mom

Me and Dad The fam - open your eyes!!

Joyce and Charlie in their new fabulous kitchen!

Joyce and Mom - two short ladies, notice the fanny pack!

Joyce's Hydrangea's


Joyce's alternative to the chocolate cake - chocolate brownies with melted Hershey bar!

Blah

Well I'm checking back in. No real updates for me to report, I'm a little better than I was on Monday, but honestly, not much. I'm really cranky and just plain annoyed! I feel like I'm back to square 1, just finishing up chemo and starting to feel better, and now, I just feel like crap again, mentally and physically. All my muscles are hurting, and I'm just so cranky and lonely. I don't want to do anything, including getting out of bed :( And I still haven't made a decision about my party, and most people don't know, and it's not like I'm going to call them all and tell them. Ugh. I just hate cancer, lots! So like I said not much of an update -- but I did manage to get out and mail Wullie's package yesterday, 9lbs of candy!! They're going to be super excited when they get it. Oh and by the way, I'm still fighting with the bitch from Sun Life, now she's just avoiding calling me back. UGH!! Pay me, damnit!!!!!

I'll write more soon, thanks everyone for the support.

XO

Fuck You Cancer!

So incase you didn't know, I hate cancer, a lot! Today I went to the oncologist, thinking it would be just a fun social meeting, telling them about random post chemo side effects and talking about the upcoming Chemopalooza slated for August 4th. Well unfortunately, I was wrong. I also need to add that I'm stupid and I went to the onc by myself because, again, I thought everything was fine. So after chatting with Tina with about 15 minutes, Kellie (my onc) came in and in a few minutes we were discussing scans. "They're not perfect." Yep, that's what I was told. My CT was "perfect" but my PET was not, I had a spot that lit up on my chest, and they don't know if it was inflammation or if it was the hodge. My options: wait a month and do another PET scan, or do a biopsy which entails slicing open my neck and sticking a camera down there and then doing a biopsy - which of course means, invasive surgery and ANOTHER scar on me! Their suggestion was just to do the PET in a month and hope it's just inflammation, but if I can't wait that long, we could find out exactly what it is with a biopsy. So hypothetically, if I do have the hodge in my chest, then we will most likely do radiation since we didn't do it after chemo - it's like my "salvage treatment" or something like that. In other words, I'm not going to go back to work until I know :( The worst thing that could happen would be to finally get approved for long term disability, go back to work thinking cancer is gone, finding out it isn't, and not being able to go back on disability. So, now starts the waiting game, ugh. And so, long story short, I'm crying in the office and wore my sunglasses on the way out and got weird looks from everyone. The next thing that crossed my mind, should I cancel Chemopalooza? Afterall, it's supposed to be a celebration of the end of cancer, not waiting to find out if I still have it.

On a brighter note, I came home to my parents house today and got a package from Veronica and Wullie that cheered me up a bit -- the package included some fun candy, a picture of their dog drawn by one of their kiddies - and the dog's name is KELLY!!, a Celtics "football" shirt aka soccer shirt, that's fun and green and it says Kelly on the back :), oh yeah, some fancy scotch nips, a cute bag that says Scotland all over it, some canned lamb (sad lamb!!), I think that's it, but it was fabulous and just what I needed today, thanks guys!!

That's all I got right now. I might go have my first beer in 7 months now, I think I earned it.

PS the wedding with PET scan guy is totally off, if he can't give me good scans

we're totally breaking up!

XO

Phew!!!!!

Wow, guess what I just did for the first time in a billion months!!! I went to the gym!! I did the elliptical for 20 minutes, and didn't want to have a heart attack, so that's all I did. But still, I'm soaked in sweat and I'm feeling pretty good. I think I could get into a habit of going. I have to figure out what the off time is at the gym at my apartment complex, it's pretty small so it seems like it's always busy. It bet I would get back in shape in no time if I went for like 30 minutes every day or so, of course, I'm getting ahead of myself, but it would be nice to get into a routine. I'm going to do some googling when I'm done with this post- but if you know the answer please share -- you know how the machines tell you your target heart rate? Well it said something like 127 for me, but I was between 170-180, is that good or bad? It freaked me out to have it so much higher than my target, so I'm confused.

I had my CT and PET scans yesterday - I was at the hospital from 9:30am until about 3:30pm, loooong day of no eating! My arms a little painful now from the IVs. The PET scan guy (who is super cute and we're totally getting married) who never has a problem doing my IV, and of course right after we were talking about how he never has a problem, HAD a problem! Ha. He was fishing around in my left arm and couldn't get the IV in, so he took it out and tried the right, which he got. Now the left one is painful -- sad lamb. After my scans I went back to my apartment to eat and settle my stomach, the CT scan barium stuff always gives me an upset stomach - oh and they switched from OJ to vanilla smoothies, which is a little better, but still yucky! After I got semi back to normal I went and hung out with Meg for a little while, then came back here and was totally exhausted! I was in bed by 11, which is pretty early for me. I was supposed to hang out with Nicole today, so I set my alarm for 10:30am and couldn't get myself out of bed. My plans fell thru, so I took a 5 hour nap this afternoon! Another reason I thought it was a good idea to hit the gym :)

Oh and how hilllarious is this, someone posted on the Lymphoma board that there is an online dating site for people with cancer - I totally blogged about how there should be one months ago, but was totally kidding. So anywho, it's called C is for Cupid. I played around on it the other day, which meant I had to set up a profile, but there were only about 5 people on it. Still it entertained me for an hour or so, so it was worth it. As fucked up as this sounds, I don't think I would ever want to marry someone that had cancer as well, I feel like that would give our kids even more of a chance to get cancer. I mean don't get me wrong, if I fall head over heels for a guy that had cancer, oh well, but still I don't think I would go looking for one. Still it would be great to have someone understand what I went thru.

Well I really need to shower because I can't stop sweating (thanks cancer!!). Chemopalooza is coming up soon, if you have any ideas for me, please let me know. Or if I forgot to invite you, let me know :)

XO

Hooray, It's Done Falling Out!!

So I'm back at my apartment now, got home a few hours ago. I went to the monthly lymphoma group meeting at the Wellness Community on the way home from Block Island, then dropped my stuff off and decided to order some food and hit up CVS for some small hair ties while I was waiting - got some new small clips and small hair ties, since it seems to be how I wear my hair now. I've got lots of little baby hairs poking thru - most of them are a very light yucky brown, but I figure soon they'll start growing in dark, and if not, I'll color it - ha! So after I bought my hair supplies I went to pick up my pizza, and the girl showed me the pizza before giving me it and asked if it looked okay - and it kinda just looked so-so, they hardly put any cheese on it (ya know the fresh mozzarella ball kind) and I said eh it looks kinda crappy - so they made me a new one that was MUCH better -- AND they gave me the first one too since they were just going to throw it out, so I've got dinner for tomorrow as well!!

Also, on the hair topic, I have to share my excitement that it's been 5 weeks and my hair seems finally back to normal - I can take a shower, wash it how I used to, and know that I won't come out of the shower bald!! It's so exciting! I just took a shower for fun before bed, and I haven't done that in 7 months :)

Anywho, I gotta hit the hay, I'm sleepy doodles and I have a PET and CT scan tomorrow. I'm not sure what I'm going to do with myself for 3+ hours in between each scan. Feel free to call my cell if you want to entertain me :) I'll post more soon. Oh yeah, and think happy, clean scan thoughts for me!!

Oh yeah and I have more pictures to download, maybe tomorrow at some point, so stay tuned for an updated photo album.

XO

My Last Night Here

Yesterday was another awesome beach day! I went swimming for 45 minutes or so and even got a little "tan" -- in other words, I'm probably the color you are in the winter :) Even my mom went swimming and she NEVER goes! I was walking her out into the ocean and she wouldn't listen to me to go out further, so instead she got hit by a few waves and fell down, ha ha ha! It was funny, remember always listen to your daughter :)

Last night after the beach festivities we had Ron, Judy, Joyce and Charlie over for dinner. Judy even brought some strawberry daiquiris which were yummy, yep, I had some with booze in em, but not a lot because I could feel a tummy ache slowly approaching.

Tonight is my last night here, I can't believe my vacation is already over :( I'm starting to look tan for me too!! Damnit! I was also told last night that my face has deflated a lot since I first got here, which is always exciting! It's kinda gloomy right now, looks like it's going to rain - probably not going to be a good beach day. I've got to pack up my room soon too, ugh. We're going to Joyce and Charlie's house for dinner tonight too.

Oh yeah and I have to vent about how annoying long term disability is... this woman managing my case is NUTS! She keeps giving me false deadlines for when I'll be approved, doesn't understand ANYTHING and expects me to do her job! It's sooooo frustrating! I sent in all of my paperwork in April and I still haven't been approved and it's mid-July! They're having trouble with the records that from my primary care dr - which really isn't my primary dr anymore since she sucks at life and I haven't seen her since I have been diagnosed - oh yeah and she doesn't work there anymore. The records they sent (which I had to go and request IN PERSON!) were vague and they don't like some of the dates since they're trying to make sure I didn't have a pre-existing condition, which is SOOO ANNOYING!! My oncologist sent them a letter saying I've never had cancer before or symptoms, but apparently it's not good enough! They also told me last week they needed lists of my prescriptions from all the pharmacy's I went to - yeah thanks for waiting until I'm in Block Island for 3 weeks to tell me this! I got half of them, and the rest should be waiting for me when I return, but it's so frustrating! This is their job to get this stuff, why am I stressing about this, and why the hell didn't they tell me in MAY that I needed this stuff! Ugh. So of course this also means that I haven't been paid since May 23 - yep it's been a LOOONG time. I feel like I'm getting punished for having cancer, what the fuck, I paid my dues, did my chemo, now pay me what I'm owed! I don't know what else to do with these people, it's just not fair, they don't believe me that I didn't have a pre-existing condition, and it's not fair!! Ugh! I kinda wish I got rid of my apartment when I started treatment, it's sooo much money and I could be more stress free if I didn't have it - of course I would be looking for a new place, but at least I wouldn't be anywhere near as poor :( Ugh, I hate cancer.

Sorry for the vent, but I'm sooo annoyed!

Anywho, tomorrow I head to my apartment, get my PET/CT scans on Friday, then go to the doctors on Monday - hopefully it's just a social visit :)

I'll try and get some pictures of me tonight, since I took the main one here, so I'm not in it. This is the only recent one of me (and mom), and it's terrible. XO

Cute Slideshow!

Here's a cute slideshow that Joe from the Lymphoma board put together with pictures that everyone has shared over the past few months - it's amazing! After you click the link, click the page and it will start to load.

I'm Just So Lazy!

Ugh, I can't shake my laziness these past few days. I've got super ADD and I'm staring at my computer doing nothing a lot lately. I'm probably recovering from my weekend as well, but still! Friday Julia and Lynda got here, we went out to dinner and then just hung out at my house - woke up early the next morning, had breakfast then walked all around downtown (which kicked my ass) and then went to the beach...we only stayed for a few hours even though it was an awesome day, and boy am I glad we left when we did because my nose was/is totally burnt and my cheeks and shoulders too - so good thing we left when we did - we had lots of fun though. I'll post a picture when they send me them :)

After hanging out with Julia and Lynda all day, I went out to dinner with mom, dad, auntie sue and uncle rich that night, and stayed up pretty late - boy was I exhausted! Ever since then I've been lounging around the house. Of course, I now have a lil sunburn on my face and the weather hasn't been as nice lately - so I've got some excuses other than just being tired.

I feel so weird lately - like I'm slacking off and just being lazy, I have to keep reminding myself that I had cancer and chemo and it's totally normal to be tired and want to be lazy! I just wish I was more motivated to become skinny - I thought it would just happen as soon as I felt a little better, but I find myself eating ice cream and being sorta lazy :( I know it takes time though, and I just gotta remember that. It's just so frustrating when I go to the beach and see all these skinny people, I get so jealous!

As for the other chemo side effects - hair loss and teeth sensitivity, they're both starting to slow down! I don't have that much hair left, but I've been pulling it back so I don't have to look at it or fuss with it -- and when I pull it back, it looks like I have more hair. I wonder why I never pulled it back during chemo - my guess is it probably would have fallen out more, so it's gotta be slowing down now! I haven't had any big chunks come out in the last few showers and I've been showering more which is also awesome - for everyone! Oh AND I found some baby hair sprouts, so soon maybe it'll start to fill out - I'm interested to see what it'll look like!

I also can't believe that my vacation is almost over :( Sad lamb!!! I'm leaving here on Thursday - probably in the afternoon so I can try to go to the monthly Lymphoma support group at the Wellness Community. I'm pretty bummed about leaving vacation mode - and I'm also bummed that our weather hasn't been as awesome as it usually is - don't get me wrong, it was nice here, but usually there are a lot more perfect beach days during our stay -- I also haven't gotten as many pictures as I wanted to. Oh well, there's a chance our house isn't rented the week of August 25, so maybe I can come back, if not maybe I'll come back for the big 2-5 in September.

Oh and PS I think I'm fighting an ear infection, cross your fingers it goes away soon!

XO

Friday the 13th

Dun dun dun, it's Friday the 13th! It's also another super beach day, hooray!! I actually woke up pretty early for me today around 9ish and helped mom do some cleaning in the house since we have guests coming tonight. I was drenched in sweat by the time we were done, yuck! I had to take a shower to cool off. Soon we'll be going to the beach, but we don't want to go too early and burn! I got a mini sunburn yesterday, it'll probably be gone in a day or so, but defintely want to take it easy on the sun.

I also want to share my pal Ryan's latest news (ya know the guy that made me the chemopalooza shirt!) I'm sooo frustrated for him. Here's his story, he finished chemo a few weeks before I did, got his scans last week and got the results yesterday - he still has cancer!! Apparently, his oncologist was giving him chemo for a 170lb, 5'11 man (chemo doses go by your weight/height) and he's actually a 6'3, 350lbs, BIG DIFFERNCE! I'm just so frustrated for him, now he has to do 4 more rounds of chemo - ugh! Stupid oncologist!! Nothing like spending 6 months doing chemo, thinking you're done and then told just kidding, 2 more months!! Grrr. Anywho, please keep your fingers crossed for Ryan to officially make cancer his BITCH and for bad things to happen to his oncologist :) Also, leave him some love on his blog!

Okay, that's all for now!

XO

A Super Nice Beach Day!

Today was a great beach day! Hooray!! I even went and took some pictures and drove around the island a little bit this morning before we went to the beach :) When I was off taking my pictures, there were these 2 women in front of me, they had just rode their bikes to the bluffs and were walking down the path to also take some pictures - then I noticed the funniest thing, one woman was wearing heels!! I mean come on, you ride a bike and walk down dirt roads in heels !? So I secretly took a picture of her, you'll have to look closely to see her shoes, but I have the proof!

So after my picture bonanza I went to the beach with mom and dad, I even went swimming for about 45 minutes! The water was much warmer than a few days ago and the sun was hot! I kept reapplying my sunblock, but I still got a mini sunburn - but it was worth it! Then we went home, showered and went back to the beach for a bonfire at Joyce and Charlie's which included SMORES! Hooray!

So yeah, it's been a pretty busy day. Oh and the other day me and mom went shopping, and I got a new belt, it's got the shape of block island on it, and the belt buckle is also a bottle opener, how crafty!?! I have some pictures I'll share in the next few days, but they take forever to upload.

Oh and Julia and Lynda are coming to visit me tomorrow! I'm excited, it should be funtastic. Cross your fingers for good weather!

XO

Scans Scheduled

I've gotten word that my post chemo scans have been scheduled for July 20th, PET and CT scan on the same day. I'll be one hungry broad that day! So I'll be leaving Block Island a day early on July 19th, it's better that way, I don't like to be around when my parents are closing up the house for the renters. Then I'll have my doctors appointment on July 23 - which is good, not a lot of waiting for my results! Just thought I would share!!

XO

The Size Of A Dime!

Hi Everyone! Not too much excitement going on here, but wanted to post an update. I guess there is a crazy heat wave going on at home (in the mid 90s) but here on Block Island, it's about been about 77 and breezy. Yesterday was really gloomy most of the day, then around 4 it got bright and sunny out, very weird. All in all, there haven't been many super beach days, you're hot where you're at our house, but once you get to the beach it's super breezy and not so hot that you want to go swimming. Me and mom walked around downtown yesterday and did a little shopping. I got a new hat, a belt, some flip flops and we replaced our broken beach umbrella :) I noticed a little color on my chest when we got home - good thing I wore spf 45!

Oh here's something funny - I went with my mom to get her haircut at the salon here I used to be a receptionist at - when I was like 19 - anywho, I asked the owner if she could spare any of those tiny (we're talking the size of a dime) rubber bands that they use for up-do's - ya know the kind that could hold maybe someone's bangs or something....anyways, ALL of my hair fits in it pulled back, and wrapped around TWICE! How depressing! I've been wearing it pulled back lately so I don't have to fuss with it and don't have to feel some embarrassed when it blows around. But unfortunately, it's still falling out. It's been 3 weeks and 5 days. I did go swimming underwater the other day though, because I just am sick of worrying about it.

Hmm other than that, not too much is new and exciting. I'll post more soon!

XO

Please Vote For I'm Too Young For This.com As One Of Time Magazine's Best Websites of 2007

Hi Everyone -

Please check out Time Magazine's article on I'm Too Young For This.com and place your vote for them (towards the top of the page). This is pretty cool because not only is it a helpful site, it also lists my blog on their site, so maybe I can make more cancer friends.

Also check out the list of all 50 sites, kinda cool that a cancer site is ahead of sites like LinkedIn!

XO

Some Bad News

Leon died today :(

I Love Free Cancer Stuff

Today I was looking at the July/August issue of the Wellness Community's calendar of events and the La Residencia Spa in Newton is giving away free services to Wellness Community participants the week of August 6-10 -- one hour facial, Swedish massage, relaxation massage of choice, manicure, makeup consultation and application. I was torn between the Swedish massage and the facial, but decided on the massage since it's more difficult to do a bad job on that :) You know me, I always jump on free cancer stuff! So if you live in the Boston area and are a Wellness Community participant, then be sure to take advantage of this - by the way, I just looked at the site and they're pretty expensive, so that makes it even more exciting!

Other than that, not much is going on today. The weather is still kinda "eh" and it's cloudy. Mom's friend George and his wife Elaine came this afternoon and are staying until Saturday. We'll probably go out to dinner tonight. That's all the excitement I got for today, unfortunately it's not a beach day :(

Oh and I just read this article in WIRED about Dean Karnazes who has become a running machine, an interesting and motivational read, though I don't see myself doing any marathons anytime soon.

XO!

Happy 4th!

Happy July 4th everyone!! I slept late today and woke up feeling kinda crappy, my back really hurt and it still does :( I keep having really weird dreams too! I went to the parade this afternoon with my parents -we walked there because it's less than a 10 minute walk and parking is a nightmare, but our house is at the top of a giant hill - and it wasn't really hot today, but it was humid and I was sweating like crazy. Mom and dad stayed downtown after the parade ended, but I walked back to the house because I was hot and my hair was making me self-conscious. By the time I got back to the house I was completely soaked with sweat and exhausted. Gross! The parade wasn't as good as usual, there are usually tons more floats, but it was still fun. The rest of the day was pretty much just lazy time. It wasn't a beach day, it was kinda gloomy and then eventually rained. I watched crappy TV and took a nap on the couch. My dog Bailey is sitting next to me on the couch right now, and he still stinks! Hopefully we can give him a bath this week sometime.

I'm starting to hate my hair. As grateful as I am to still have some hair, it's not enough to do anything with and I always feel like I look weird. I've been getting frustrated with it lately. I kinda just want to cut it off, but I don't think I would look good with short hair. Anyone a photoshop genius and want to show me what I would look like with short hair? Maybe I'll get a wig for those days I want to look nice. I dunno. It just bothers me lately. When it's flying around in the wind, ugh I hate it. Oh yeah, and it still hasn't stopped falling out! Fingers are crossed for soon!

Cross your fingers for some good beach weather this week - I really need to get some swimming in!

XO

My First Drink

Today was a busy day -- I went to the beach and then to Ron and Judy's for dinner and fireworks. We brought my pink champagne for fun, I thought I was ready to have a drink, but after a few sips, I knew I wasn't. I got buzzed off just a few sips and then got a stomach ache, and now I'm feeling dehydrated and tired - and drinking lots of water :) Ahh well, hopefully I'll be able to have a couple drinks at chemopalooza, and maybe when Julia and Lynda come visit in a few weeks.

I've been watching Michael Moore's new movie, SICKO - my internet is slow here, so I've tried a few times, but it's online and totally free, so feel free to check it out - in fact, I don't even think it's out in theatres yet. It makes me a bit nervous though - for those who don't know, it's about the US health care industry and how fucked up it is - that's the jist, I've only watched about 20 minutes so far. But it makes me nervous because I still haven't gotten an invoice from my insurance for ANY of my chemo, surgeries, or anything. Pretty crazy!

Anywho, I'm going to get back to watching the video. I'll post some firework pictures soon.

XO

Here's A Slideshow Of My Pics

Check out my slideshow I made of the pictures I took yesterday



Block Island Summer 2007

My Pup The Surfer!

Today was pretty uneventful - I helped my parents plant some plants in our yard this afternoon, then everyone had nap time for a couple hours. I woke up and went to the beach with my dad and pup - took some good pictures too! It was kinda annoying at the beach though, there was no breeze so all of the nats were flying in my face and eyes!

I'm uploading my pictures onto my webshots site, but the files are pretty big so it's going to be a while until they're up and running. You can see them here when it's done uploading :)

I'm gonna go finish being lazy. Hopefully tomorrow is hot and I can go swimming again! :)

Oh and incase you're wondering, Leon is doing fantastic! He's in the middle of our kitchen table so he can eat with us - he's an attention whore! :)

XO

Meet Mary Jane!

I just wanted to tell you all about Mary Jane who found me on the Lymphoma board. She's just about to start treatment, same stage as me, and she's already ready to make cancer her bitch. The funniest part is, we have the same birthday (September 9 - start shopping for presents soon!!!) and we're 5 years apart. Please check out her new blog, and if you think of any cancer tips, make sure to share them with her :)

Thanks!!!
XO