Getaway

Hi all!

It has been a little while since my last fun, positive post! 

I wanted to let everyone know that I have 12 radiation days left and since my last post, I started to lose my hair, like a lot of it, since Sunday, every stinkin' day. So far I have managed to part it wayyyyy over to the right and cover up my, oh so beautiful bald spot/receding hair line. Pretty much all that grew back since surgery on the left side is gone and literally dead center of my head back is just bald.

And the left side of my forehead is getting really red. It doesn't really burn or anything but it's called "radiation burn." It just looks really irritated and red and blemished and obviously I can't put any make up on it at all. 

And I noticed my left eyebrow, a few hair falling out here and there each day. I'm really trying SO hard to not let it all bother me but it's tough. I really don't know how I will handle a missing eyebrow. Probably have my second emotional break down. But until then, the thinning calls for a little brow pencil.

It's all a little more frustrating because even though I "expected" it, it doesn't matter. It's totally different once it actually happens. And the doctor said it will probably just thin. Yesterday the nurse said "yeah we weren't expecting you to lose that much." Like that's great to hear people. They need to be more negative at the get go. Tell me I'm going to lose it all so when I lose a little I'm happy not surprised! I also went to Jean Paul to see what they could do to cover it and he said I'm doing a pretty good job and I should leave it alone for now because you never know what else might happen. He's right. At this point, pretty much everything people "expected" wasn't this case so I'm going to stop expecting and just let shit (please excuse my language) happen and deal with it!!

And the fatigue has been unbearable! I feel like a zombie. But I still wake up at like 4:45am and can't fall back asleep. It's crazy. I wake up like wide awake, ready to get the day going and then later in the day I'm exhausted! So this morning, the new standard 4:45 hits so I decided to shower and be to work by 6:30am instead of just laying in bed with my eyes wide open. So my mom picked me up at the office and we went and I was done by 8:25 (they took me early) and back to work I went. By 2pm I was literally about to take a nap out in my car. And of course I can never fall asleep by 10 either. 

Anyways, the purpose of telling everyone all of this is because I decided that I am not going to participate in the race this weekend. I appreciate everyone who bought t-shirts and signed up and I apologize if anyone was coming to see me but frankly, this weekend, I don't want to be seen. I want to RELAX. Maybe hiding a little but just let me for one weekend. I have been doing way too much. And the minute that John found out about my wishes, he booked us a little Inn at Saranac Lake where I have never been! I'm really excited to go there and just relax. Don't want to, don't have to, see, talk or answer to anyone! (Except my mom- she gets special treatment, especially after that slap.)

Anyways, things are moving along. Just can't wait for it to be over! These moments I have been having are the ones that really make you realize how silly and insignificant it was/is to stress over the small stuff. It's okay to care about things but it can be taken too far. Remember that things can always be worse. Always. 

Thank you guys again for the t's, race and all other donations and gifts! It really shows how great people can be. It makes me tear up every time :-) 

I hope everyone has a great weekend!

<3 Erica

Time to take a chill pill...

Hola!

I wanted to clear up a few things that I have been asked by more than 1 person over the past couple weeks:
(1) Radiation treatment is Monday-Friday, NOT one day a week but five
(2) I take a chemotherapy pill, every day of the week, all seven
(3) I am not sensitive to loud noises anymore (unless I'm trying to sleep of course)
(4) I am back at work full-time, with the exception of my daily treatments, appointments or any other medical situations

So even though I may or may not have said I didn't want this to get too "personal," I think it is a little late for that...

Let me begin by saying, this weekend was the first time that I actually had an emotional break-down. I'm talking Saturday 1am until I fell asleep, Sunday at 8am immediately when I woke up, Sunday on my drive to Hudson and Sunday on my drive back to Albany. I think a total of 3.5-4 hours. BUT from what I have read and heard, everyone has to have these moments, then you let them pass, and MOVE ON.

I think I was so scared since I started on September 3rd (15 days ago - 30 left) that I just kept everything bottled up. I was making myself more anxious over everything that I had to go through and making it harder for me and some people that I really love a lot.

For example, I was FREAKING out about having to take the medicine on this strict schedule and have "special" toiletres. So I would be over dramatic and say I can't go ANYWHERE or do ANYTHING without having to deal with all this medicine and toiletres. WHAT IF I GET SICK? Complaining about "never being able to have a sip of alcohol again or go out with friends." I mean - that's not even true. Not even close.

And I really realized that this past week. I think I went out to dinner 5+ times, went to a bar, went apple picking, hung out with friends, etc... Yeah, it was a little different than I would have been 3 months ago but not in a bad way. It's actually kind of fun being sober and realizing how "funny" (that's my word of choice over my original word I thought of) everyone else acts and it's also kind of nice going home by midnight and not staying out until 3am and having a really crappy following day. Maybe I'm growing up a little, a little more mature, and I don't hate it!!

And, as it turns out, it's really not that big of a deal to bring the medicine along with me, my extra 'travel' case of meds really comes in handy. I just keep it on me at all times so now I even think I could do some last minute stuff. As for the timing of taking it, I have been lucky that I don't get sick so as long as I have my cell phone on me to remind me of the time, I can take them really anywhere, not ONLY while laying in MY BED at MY APARTMENT. Talk about dramatics. I would probably make a pretty good actress, you can ask my mom. One time she "slapped" me and by slap, I mean she put her hand on my shoulder, and I threw my entire body across the room, onto the floor and started crying. The woman has never even really raised her voice let alone slapped us. Mind you - I think this was the time I got caught sneaking out of my house in high school with my partner in crime, Breanne.

And as toiletres goes, I mean, I normally would just have to bring my regular toiletres anyways. Get over it, Erica.

As you're reading this, you might be wondering where I'm considering "traveling" to and from. A lot of this is all related to spending the night at my boyfriend John's apartment, which is less than 10 minutes away. A lot of it also has to do with me complaining to HIM mostly about all of these negative things. Making it seem like I will never be the same Erica as I used to be and that going out is unacceptable. AND I realized, that he has also been dealing with a LOT, not just me and we haven't been together for all that long and he still is here. We both need to compromise, not just him. I am actually really lucky that I have him and I love him for putting up with all of this so far. I love him either way but still.

Anyways, this is where, "Time to take a chill pill..." comes from. I have had no extreme negative side effects yet. Why am I acting like I have every possible one? Now is not the time to be anxious, stressed or dramatic. I need to save it. As treatments continue, I will be more tired and most likely need to sleep a lot more, relax more, etc. I will also most likely lose at LEAST some hair in the treatment areas. My skin will get worse on my forehead. BUT IT ISN'T RIGHT NOW. TODAY. Which is how everyone should live, in the moment, not constantly thinking about the future. That is no fun for anyone. It causes more stress than needed.

Truly Medical Update
Speaking of side effects, I have started having some minor ones. I am starting to feel more tired/fatigued than normal but nothing that I have been worried about yet. But the more major of the minor side effects is that I am already starting to have the irritated, red, itchy, sometimes burning feeling, on my scalp and forehead. I guess radiation acne is also something that can occur, or at least that's what I am calling it. It's like a rash but red bumps. Not too bad yet, but for me, 1 bump is like the end of the world. AND I can't put my make-up on it. Too many chemicals and other ingredients. I think fragrances are the enemy. Yikes!

My next goal is to research fragrance free, organic products; make-up, dry shampoo, lotions, etc. I have a gift card to Sephora. They have to have SOMETHING I can use. I'm also going to this Look Good Feel Better class tonight at the American Cancer Society's Hope Club.
http://lookgoodfeelbetter.org/

Ok, so I feel better now that I got all that out. Also, if anyone is wondering, I am going to Woodstock this weekend with my mom, Aunt Nikki, Lexi and Nonny and I'm pretty excited about it. Rain or shine, we're going. That's why rain jackets, boots and umbrellas were invented!

I have also been receiving some really thoughtful, amazing, kind, generous (I could go on forever with adjectives) donations, letters, thoughts, gifts & other support. Each one means SO MUCH to my family and me. I can't even express it enough. I feel like I say that a lot but I really mean it.

My mom also is in the process of moving today and during this move she must have sent me at least 20 old pictures that she found. Most of them are really funny/cute. They also include her and Rich back in the day. Those are classic. I think this is my favorite one so far that she found of Bryan and me.

Ok, peace everyone. Love you all.

Forgot to say...

I saw my radiation doc today. Last week my blood pressure was really low so they said to drink even more water, if possible. And today it was back to normal!

And also it's crazy how the process of going into the "Grave Danger Very High Radiation" room, laying down and being positioned on the table, clipping down the mask, moving the table all 6 times and moving the machine, then taking off the mask and putting the table back down to a step-down level, takes about 90% of the whole time it seems like.

Work update- Today I'm going out in the field to work at a client which I'm excited about. Get some client interaction in :-) Just patiently awaiting some co-workers to meet me.... 

Also, I'm over the headbands for right now. While my hair is still intact. They're kind of hot and itchy and make my scalp where the surgery line is really red. No thank you!!!! Free for all!

Belated Birthday Blog

Hi all...

Medical Update

I still have not had any major side effects from the radiation and chemotherapy treatments. My hair seems to still be fully in place. I'm noticing my skin is changing
a little. A bit more red and kind of dry, sometimes itchy. Hopefully wont be too much worse.

I also have not been sleeping well at all. Since Monday I think I was unable to get more than 4-5 hours per night. Not only have I been unable to fall asleep early, I wake up several times per night, but anytime I wake up after 3:30am, I can't fall back asleep because I have a bad stomach ache. Not really nauseous but not good. It has happened Tuesday - Friday. Then, last night up until about 3am and woke up at 8am. Just really the tiredness & fatigue is getting to me. Making me a little stressed, anxious a little, edgy, really trying to work on all that!

I was able to enjoy some nice dinners and time spent this past week for my birthday with my family and friends. Just had to remember to take my meds with me; annoying but doable.

Also for the record, loud noises don't bother me anymore. Common misconception that I have noticed. That was a post-surgery side effect. Now the only time noise bothers me would be if I'm exhausted and trying to sleep. 

The hardest part so far had been the timing of the medication and the fear/anxiety of how it might affect me if I'm not home. For example, I went to Philly Bar on Saturday to see some friends and try to enjoy myself. I got myself a nice seltzer with lime. No alcohol is really growing on me and I'm realizing how much more grown up/mature I feel already. But anyways... I had to remember to pull out my handy sandwich  baggies that I had to prepare prior to going with the meds inside, sneak them back at the table, two different times because its on the strict time schedule. Hoping I don't get sick because it was my first time taking it and not going right to bed after. I didn't get sick! Thank god. But still look forward to never having to go through this again. 

The radiation is going by quicker it seems like maybe just because I'm getting used to it. I'm becoming good friends with the technicians. I brought them cookies which they said were gone within one hour. I also counted this last time, the one kid comes in 6 different times to move the table. It's a button on the end of the bed, and he moves it to the right angle, each time the machine also moves around. So I'm in 6 different angles, getting radiated on for what seems to be 15-30 seconds each time maybe 10 times. That could be totally wrong because I'm just counting in my head. 

My birthday was really awesome though because I have some amazing people who really made that happen. And they know who they are :-)

Now I'm going to take the meds and try to go to bed by 10 so I can get some real sleep tonight! Wish me luck people... 

Countdown until my little no treatment break - about 4 weeks and 1 day! Someone actually got me 45 days worth of scratch off tickets that I scratch 1, each day closer to being done. I have won $3 so far. 

Also got this amazing thing in the mail..

Loved it! Thank you! 

Also, wanted to thank everyone else as well for all the birthday wishes, gifts, kind donations, and as always, support. Love you all for that. 

Sleepy Saturday

Top of the morning to ya,

I started, what I would call, an awesome post on Thursday night that included lots of updates, thoughts, feelings, pictures, etc. Then I kept adding to it as things came about, like when we had to pull over on i90 last night because we thought we ran out of gas and the next rest stop was 26 miles. Then... I accidentally deleted it. 

So anyways- it started about how much I normally hate packing to go away for a weekend but how now it's even worse when you have to think about, scarves and/or other head coverings, special shampoo, special face wash, special lotion, 8 medications (9 if you count two separate doses of Temodar), what there will be to eat at the wedding, what if I get sick, f---, I just want to enjoy myself. But then I thought, I can at least make packing toiletries and medicine more fun. So I went to a craft store and Marshall's and bought these little containers, bedazzled them like a child, and labelled them. And bought this cute Steve Madden case to carry them all! 

Also, I started thinking, "special" toiletries aren't actually a big deal, especially when you can just purchase them all, OTC, at your local neighborhood pharmacy. They're just a little more expensive than I am used to but thats why I love CVS coupons (saved $10 on Thursday). I just got a little dramatic while packing, to say the least. The worst part of the medications is the TIMING. I have to be on top of it at all times because I'm pretty sure missing a dose is frowned upon. I got this app called RxmindMe. It's actually so awesome and helpful. 

Quick side story- on the way to Clinton last night we had quite the gas scare. John, who insisted on taking his car instead of mine, pulled off the highway in the middle of nowhere (minus the beautiful lake to our right- see pin drop location below) and said "I'm literally on E right now, what do we do?" so I said "I have no idea, do you have triple A?, I've never run out of gas before."  And he said "I haven't either." Then I see a HUGE sign in front of us "Next Rest Area 26 Miles". GREAT. I wasn't mad at all, nor was I surprised, but I was actually laughing to myself a little and decided to take some pics. It seemed really typical even though "he hasn't either." So we called his mom who sensibly asked ok rest area 26 miles but what about exit. So I googled it, 9 miles ahead, Canajoharie. Thank god Betty Beavers, cash only, fuel stop was open for business....oh by the way, found out at dinner that this was not actually his first time running out of gas on a highway. Maybe his first time doing it where Dickie couldn't come save him but not his first time. "I haven't either," that's really cute. 

Oh and the time on our way home from Boston at 1am, on E, pull off the Watertown exit (not long after the awful marathon happenings), every gas station was closed and it was pitch black. Finally found a Hess after arguing over it. But for the record, he was driving in his vehicle, each time. Maybe I can invent an alarm that goes off when you have 1/4 tank. I still love him after all that. Also, for the record, AAA does come in handy. I have personally used them 10+ times, including several instances of locking my keys in my car (sometimes running, sometimes not) during my Siena days.

Now that I'm really off on non-medical tangents, let me get back to it.

Overall, my first week (only 4 days but still) went pretty well. I only got really tired on Friday around noon-ish but instead of going home, I decided I would sleep well that night instead. My hair has not started falling out yet. I have not been sick one night. I have a legitimate excuse for my current, over pale, some might say ghostly, skin. I guess the Cuban doesn't always come out in me. And it seemed like each day, the actual radiation process, got better, quicker, easier. That's enough positive in itself because if anyone watched that video, they would know, it's freaking creepy. 

Like heyyyyy- (Not me by the way. I haven't worked up the guts yet to creepily ask the technician to take my picture while I'm in there but I think I will. We're becoming besties.)

And the reason for the title of this post and for me not wanting to stop writing is because currently, John is still sound a sleep next to me and I'm bored and kind of hungry. I've been up since 8:30. 

Maybe I will just start getting ready for the Wedding now. It's never too soon!

And Laura, your most recent fundraising post was amazing and so are you. I love you and everyone for helping and supporting me so much. Currently working on that life size, cardboard cut out of you at the event. Anyone know someone who could assist?

Thank you SO MUCH for everything!!! What would I do without all of this amazing support?!

<3 Erica 

Thursday Treat(ment)

Third day of treatment. No side effects from either radiation or chemo quite yet but I don't think it's expected for at least a couple of weeks. The hardest part for me is deciding when to take the anti-nausea (Zofran) because they said an hour before the Temodar and the Temdoar right before bed but some nights I go to bed at 10 and some 12. Maybe 2 hours won't make a difference? Add it to my list of questions!

Today they put on country music for me (remembered from last Friday!) and the mask fit better and it was super quick. They called me in at 7:55 and I was done at 8:25! Once I start driving myself, I could be to work by 9 for sure :-)

I wonder if they have house music. That's what really used to get me going on my way to work!

Also, started the twice a week hair washing. How pretty.

And I have my first follow-up appointment with Dr. Weaver next Thursday, the 19th. Probably will have to have blood work done, maybe a scan, definitely some talking! She's great. 

I'm so happy that the Temodar hasn't made me sick yet! I think I will really enjoy my weekend now! Maybe a little cha-cha slide at the wedding. YOLO right.

(To that quote- every minute except when you're packing to go away for a weekend and unpacking when you get back- that I don't enjoy. lol) 

You'll hear from me soon!

<3 Erica

First day was a-ok!

So, radiation was fine this morning! It took about an hour and a half in total by the time I got called in, radiated on, moved around, talked to, etc. should be quicker as we do it daily. The mask was really tight and they had me listening to a little ACDC. I didn't mind that at all. As long as its not silent! Oh yeah, and it smells funny when they radiate. Almost like metal. And a few people have asked, there is no pain during the treatment.

Overall, thumbs up...

Now, I'm off to work. 

To add, the extremely nice technician, Kyle, moved my time to 8am as originally planned. I told him I wanted to hug him I was so happy. He said the water works on Friday really made him feel so bad so he moved the schedule around to get me in at 8! Thank you, Kyle! (He's very cute too for any single ladies out there...)

Medicine starts tonight... Pray for no negative side effects 🙏. Then I know I can take it on the weekends and not have to worry about anything going wrong. I have a wedding to attend this weekend in Syracuse so I'm really hoping it all goes smoothly! I am actually for the first time I think in my entire life going to wear a dress I bought for the night before graduation, again. Wearing a formal dress twice is just not heard of for me. We will see. 💃

Then a few weeks in the red skin, burning, irritated, and hair loss begins.. The joys of radiation therapy combined with chemo. I wish you could choose where the hair loss took place, that would be some business. People would be lined up for radiation. Legs, armpits, bikini line, where my eyebrows grow in too thick, yes please! Sign me up! Can I keep my head hair, brows and eyelashes? Great, thanks. 

Does anyone know of a way that I can post something to look for other grade 3 brain tumor patients in their 20's? You know like post it somewhere to have them reach out to my e-mail or something, which is en11word@gmail.com if anyone is wondering. Lemme know!

Peace and Love.

<3 Erica

Happy Labor Day

So, tomorrow I start radiation and chemotherapy. My time slot is 8:15am and will last through October 15th. I'm actually finally starting to get really nervous but I think it's going to be a-okay. Usually when I get nervous/anxiety, I just try to get as much stuff done as I can, even if the time doesn't permit it. So today, on Labor Day, a day to relax and celebrate working hard for the remainder of the year, I went grocery shopping, pharmacy shopping, did my laundry, did John's laundry, cleaned John's apartment, cleaned my apartment, went out to lunch, went to the car wash, went out to dinner, prepared my lunch for tomorrow, planned out my dinners for the rest of the week, laid out my outfits, cleaned my apartment again, cleaned out the fridge, walked home in the pooring rain from Dinosaur BBQ (that was fun) AND last but not least, I really cheated on my low sugar diet by splurging in a little froyo. I think it was worth it.

On Friday, I had a mini-tragedy/sob session after my dry-run. To start, everything was 30+ minutes behind schedule, they didn't have my mask ready in the room, two of the technicians went back and forth on whether or not I should take my lanyard/badge off (I think they should be on the same page there- I shouldn't be the one wondering), they never put music on even though they asked me what type I like to listen to twice, then to TOP IT OFF they said "see you at 3 on Tuesday to start your sessions" when I was specifically told on the phone last Tuesday that I would be seen at 8am so I told work that and when I have a plan in my head, that is IT and when things change I get a little, what should I say, emotional. You can ask John, plan changing is my absolute least favorite activity. Then they said, "why, does 3 not work for you?" and I'm thinking, well it's not convenient and I wish I wasn't told 8am but I mean, it has to work, doesn't it? But instead I just started sobbing and left the room. Then, 5 minutes later, the very nice tech came in the room I was in and said that they could squeeze me in at 8:15am because the woman who has the 8:30am slot is always late. TALK ABOUT A SIGH OF RELIEF. Also, talk about those technicians being lucky because I already had an entire e-mail written up in my head about to be sent to the office manager regarding my awful visit which quickly turned into an awesome visit as soon as the time changed back to first thing in the morning.

So, I plan on working through it all if anyone is looking for me.

http://youtu.be/xQ_73QgWlvI For anyone interested in the process of brain radiation. Around 1 min, 30 seconds, you can see the mask that they put on you, that clips into the bed so you can't move. I think that is my favorite part of this all. When it is over, I might have a metal bed like this installed into my bedroom and see if I can borrow the mask to clip in every night. I hope those of you who don't know me that well realize that this is the sarcastic paragraph of tonight's blog.

BTW- creepiest package I have ever received...

AND, something else I thought of tonight that I really didn't think of until tonight is the extremely poor timing of this whole thing. Although I realize that no time would be a "good" time to go through cancer diagnoses and treatments, check out this timeline.

Friday, June 28th - primary doctor finally orders a cat scan and let's me know on Friday afternoon that there is a "spot" on my brain that is most likely some form of growth/tumor but that we would need to have an MRI  on Monday, July 1 to find out more detail... "HAVE A GREAT WEEKEND THOUGH"

Monday, July 1st - MRI shows a definite growth but seems benign but will need to meet with an neurology oncologist and surgeon to find out the options which were (1) wait and see what happens, (2) needle biopsy which may or may not lead to surgery or (3) full on surgery... "HAPPY 4TH OF JULY THOUGH"

So, I chose the surgery to be done on July 16th which ended up being July 17th and pretty much from July 1st - today, I missed most of the summer, some of my best friends birthdays, planned work trips, vacations, etc. But no more holidays, which was good, oh WAIT, then it wasn't benign...time for treatments.. what better time to start then the week before my BIRTHDAY... of the 365 days of the whole year, my birthday has to fall in the 6 weeks of radiation. To be precise, there is a 11.5% chance of that happening.

At least after the 6 weeks of radiation, I have a 4 week BREAK (from about the 16th of Oct to November 12.) Can't wait fot that! During the break is Halloween, finally, a holiday off and the fundraiser. That is pretty cool actually. Then onto the definite 6 months of a higher dose chemotherapy, alone (through around May 2014) but up to a year. The doctor said I should be able to schedule things around the chemo days though, which was also good news. Like she said I should still be able to go to Italy with my mom, aunt Nikki, Lexi and co. in April 2014 which was quite the relief because it is in the process of being paid for and it is not cheap and per usual, we didn't sign up for insurance and it is (for me at least) a once in a lifetime opportunity.

Note to self and others- sign up for insurance for all trips. ANYTHING can happen even though you really don't think it will. 

Now that this was my most depressing blog yet, I wanted to say that I am still very happy and positive and have still been smiling and laughing EVERY day. Even when I think of all of that negative stuff, things can always be worse. Remember THAT people!!! You really should appreciate the little things in life.

Ok, hope this update was good for everyone. And thanks again to EVERYONE for all of the support/donations/gifts/love. I don't know how to thank you all enough. 

And thank you to everyone who have really gone out of their way to see me over the past couple months. It means more than you know. :-) 

 

Love you all! 
<3 Erica