Friday, July 31, 2009

on the upside...

Hey Guys,

I've been thinking the past few days and I've realized that despite all of the really crappy side effects of the chemo, there are actually a few that I've been really enjoying! (I know that probably sounds really weird)

1) hair loss means ALL hair - not just on your head... this means that I haven't had to shave my legs or under my arms in a few weeks - which is great for the summer

2) hair loss also means shorter showers - a time AND money saver... especially when I'm used to having too much hair, which clogged the shower drains and took forever to wash & dry

3) freckles! I've always wanted freckles, and I've noticed in the past few days that the chemo has been giving me tiny little freckles on my cheeks - apparently they're only temporary, but I'm enjoying them while they last!

4) the BEAUTIFUL skin that is the result of a combo of chemo drugs & bactrum (the antibiotic I have to take twice a day on Mon, Tues, Wed to prevent a chemo-specific strain of pneumonia). My skin is fantastic - clear, smooth, and glowing like I've gotten a facial (but not)

5) people in public assume that because I'm bald, I'm either on chemo or really edgy (since I still have a tiny bit of hair as well as eyebrows and eyelashes), so they're always clearing the way for me to walk through or holding doors... nobody wants to mess with a bald girl

6) I don't have to worry about my hair messing up in the rain... I can just wipe of my head and be done with it! (I still have to worry about my makeup running, though...)

...That's my list for now. I'm not sure I'll come up with much more, but I'm glad there are at least a few good things coming out of this!

Also, I have a funny story to share...

Today I was at IKEA with my family, looking for a futon for Andrew's dorm. So far, I haven't had any issues with strangers commenting at my bald head, and few instances of anyone staring (even little kids). However, today there was a little girl that made me laugh so hard I started crying... I was walking through the store and passed a tiny girl and her bald dad... She was maybe two, three at the oldest. She starts pointing and yelling "That girl has no hair!" I smiled and waved at her, and her dad looked mortified - he picked her up, and she kept yelling - even AFTER he put a pacifier in her mouth and tried to take her around the corner. We ran into them later, and he looked so embarrassed, but I don't particularly care - little kids are basically uncontrollable with what they say! The fact that she was so insistent about it made me laugh so hard - I can imagine that I was probably like that as a
little kid. My mom says I would never stop talking.

Lots of Love,

ps here are some pictures of me decked out in a couple of wigs from the opera... Thanks to James Geier for letting me try them on!
Me as Susanna from the Marriage of Figaro

Me as Carmen from... well... Carmen - I look good as a gypsy

Thursday, July 30, 2009

who knew?

Hey Guys,

So today I was browsing CNN and MSN as I usually do when I'm bored (which is often) and I came across this article...

I had no idea that there were so many hilarious blogs out there documenting twentysomethings with cancer. I was THRILLED to come across it, thrilled that there were links to the blogs, and even more thrilled that there's an entire social networking site for people in their twenties who have/have had cancer... it's called, and I just joined, so I'm not entirely sure what it's about - I need to do some exploring.

I've been reading through some of the other blogs, and it's really cool (kind of crappy, but still cool) to see similar experiences with the nausea, the drugs, etc... they also make me realize how "lucky" I am to hang Hodgkin's instead of something else.

In other news, I've discovered that little girls and really cute guys are fascinated by my bald head. Little girls (in the 3-7 year old range) love to stare, but not in a mean way... it's like they're trying to figure out what's going on... like... "ok... that person is wearing a dress, makeup, and heels... but they have no hair..." I've started waving and smiling, which usually gets a big grin and a wave in response, sometimes with an apologetic look from the mom. I don't mind - I kind of like being bald (it's a lot cooler in the heat and humidity of southern Ohio), and I think little girls should know it's ok to look different! I love standing out - first the bright red hair, now no hair at all. And the cute guys - I have absolutely no problem with them staring. I keep getting hit on (not creepily) by really attractive guys. Why did I never have this problem when I had hair?

Now that I'm done working, I think I'm going to start writing on here more. Lots is going on!

Lots of Love,

Wednesday, July 29, 2009

3 am?!?

Hey Guys,

Apparently I have insomnia... it's 3am and the only thing on tv is infomercials and Whose Wedding Is It Anyway? on the Style Channel...

My summer officially began today - my internship is over (which I'm pretty sad about), and now I have almost two months to relax before classes (hopefully) start at UC on September 23rd. I've sent out emails to several professors about taking their classes in the fall, and now I'm just crossing my fingers that everything gets approved and works out the way I'm hoping it will!

This past week was pretty rough - definitely the worst one so far. I had a lot of nausea and joint pain, and I was exhausted most of the time, but I'm hoping that the next one won't be as bad since I'll be able to sleep a lot more and not be working. Also, with the new nausea medicine they gave me all figured out, I'm looking forward to being able to take it before I start feeling sick instead of after. I still don't fell 100% back to normal, but definitely much, much better than I was at this time last week. I actually had to go home early from work one day, which was really disappointing since it was the last week and there was a lot going on.

In better news, the prescription my doctor wrote for the hot flashes FINALLY kicked in, so I'm not sweating profusely and turning bright red every hour, which is awesome... hot flashes really aren't that attractive...

Molly and Dan got married this weekend - the wedding was so beautiful! They got married at Lake Lyndsay in Hamilton, which is about 45 minutes west of my house here in Cincinnati. The ceremony was supposed to be outside, but it rained all day so it was moved into the hall where the reception was being held. Despite the move, everything went really smoothly and the ceremony ended up being perfect and wonderful! I still can't believe that Molly's married! We had a small fiasco at our table when *someone* (me) knocked the cake over while cutting it... fortunately, each table had small individual cakes as opposed to one big fancy cake for the whole reception, so there wasn't too much damage, and not too many people noticed (of course the bald girl has to be the one to cause a scene!)

I should probably get going - now it's 3:17 and my mom just came in telling me that it's after 3am and my light is keeping her awake...

Also, I wanted to remind all you Clevelanders that I'll be in town Monday-Thursday/Friday, so let me know if you're available - I'd love to see all of you! Anyone in Columbus, I'll be driving through late morning on Monday and either Thursday night or Friday morning...

See you soon!

Lots of love,

ps Sydney posted this on her facebook today, and I loved it so much I feel the need to pass it along to all of you...

Tuesday, July 21, 2009

Pills Galore + a third of the way done (sort of...)

Hey Guys,

So the other day I've decided to take count of all my pills... there are sooooo many - I feel like an old person! I have one of those pill organizers that has all of the days of the week, with slots for AM and PM. So far, in the mornings I take between 10 and 15 pills (depending on what day it is) and about the same in the evening. It seems like every time I go into the hospital, I have a new prescription for some new side effect that has developed since the last time I was in.

So far, the worst side effects have been the nausea (ew) - with the first treatment of each cycle, it's not so bad (usually just a tiny bit that evening) but so far with the second treatment, it's been pretty bad. I had my last treatment on Monday, and I'm still having a lot of nausea. I have about four different prescriptions to help the nausea - each one is a little bit stronger, and some of them make me pretty confused & loopy (one I haven't even taken yet because it's supposed to be pretty potent), but between the combination of them, I've been able to eat pretty well and keep up my weight.

The other side effect that has been KILLING me is the hot flashes! When I had my first treatment, I got a shot called Lupron, which is supposed to stop my period for three months. What they didn't tell me was that it's basically putting me through menopause. I've been getting the most horrendous hot flashes that make me turn so red that it looks like I've got a really awful sunburn - so much so that Stephanie told me it looked like I'd been out in the sun a lot! I'm on a new prescription right now to help with those, so hopefully in a few days that will take effect and I can stop sitting around with a cold washcloth on my head!

Also, since my hair has mostly fallen out, I've got a new way of styling it - with a lint remover! It feels so ridiculous, but it's the only way I can keep all of the tiny little hairs from falling out and getting stuck on/in my clothes and itching a whole lot.

Today I also got some good news - I met with the Undergrad Dean at CCM about taking my fall semester here in Cincinnati. So far, so good - I just need to email all of the individual professors for each class to make sure that they're willing to take a "non-matriculated student," and I'll be all on course for making sure I can graduate "on time"(ish)

So far, that's all for now - Molly's wedding is on Saturday, so I'll have plenty to fill you in about & lots of pictures to post soon!

Lots of Love,

Friday, July 17, 2009

No More Hair!

Hey Guys,

For those of you who haven't heard yet, I am now officially bald! (well, except for a few stragglers that insist on hanging on & giving me a nice Alfalfa look when the light hits my head right)

(Tyler & I on our way to Ainadamar/Prom)
The Big Event happened all at once - unfortunately while poor Tyler was visiting. Last week, it had started thinning so I put off washing it until Thursday night's Ainadamar After-Party (I wanted to make sure I had a little hair to go with my awesome dress)... The next morning when I got in the shower, it all came out AT ONE TIME!!! For about 10 minutes I had a great "Little Old Man" look - about 20 pieces of inch-long hair scattered across my scalp. Needless to say, my mom was pretty shocked when I called her up to see it. Fortunately, she has the clippers and got right to buzzing the rest of it down to the scalp.

I was afraid that I'd be really traumatized when it happened, and I have to admit, there were a few tears - but all in all, I'm not hating the look. The worst part about being bald is that my head is ALWAYS cold! I haven't been wearing my wig because it's so hot outside, but it's freezing in my office! I've been wearing scarves occasionally, but they're kind of a pain sometimes (especially when I'm running around the building constantly). So far, I've gotten really good reactions about the new 'do... People (especially guys) seem to be fascinated with the fact that I don't have hair AND I'm not covering it up - the guys at the Opera (gay and straight) love coming up and touching my head (which I find hilarious and extremely unexpected)... It's also cool to be able to play with makeup and jewelry in a way that I wasn't able to when I had tons of hair... So far, the only person who seems to take any issue with my baldness is one of the Supernumerary Kids in Carmen - she keeps giving me weird looks, and I'm pretty sure she doesn't like my haircut...

On a different note, I started my second round of chemo on Monday (only 5.5 more to go!) and it went pretty much as smoothly as the first one. Well, after it FINALLY got started... When I got in on Monday morning, there was a HUGE backup in the Day Hospital due to a bunch of unexpected emergency kids, and I didn't end up getting started for about 2 hours after my appointment was supposed to start.
(Me & Tom)

After the chemo finally got started, though, everything was great. I was really happy to have a visit from Tom Jaworek and his mom (who is a good friend of my mom) - he's a couple years older than I am and is being treated at Children's right now also, so it was good to have him come up and say hi - we've never been in at the same time before... Also Molly and Dan stopped by with some games (that ended up not getting played), and it was fantastic to have Molly visit! She actually spent the entire visit in my hospital bed with me, which was awesome. Melissa came later on in the day, which was great - especially for my mom, who needed a break from the hospital room and was able to take some time to run down to the cafeteria and grab some food.
(Me & Molly!)

On the topic of food, Children's Hospital is great because they have "room service" that the patients (generally kids) can call and order from - it's a HUGE menu, with all kinds of kid-friendly foods that take me back to my childhood... Unfortunately, since it is a CHILDREN'S hospital, when you order off the "room service," everything comes in kid's portions... which gets EXTREMELY frustrating when you're 22 and have an appetite much bigger than the average patient. First of all, when I call, they always ask me for my child's information... and then expect me to order food for a kid... I generally forget that there will be a child's portion, and end up getting something like 3 fishsticks or 4 raviolis... not enough for a meal! The good thing, though, is that the cafeteria downstairs is FANTASTIC (although a little expensive), but we can also bring our own snacks.

...And even some more about food...

Originally, when I had my first treatment, I was given a short list of foods to avoid during the week that I was on oral chemo. The list consisted of bananas, citrus fruit, cheese, dark beer, and wine... all of which I was totally okay to stay away from - I hate bananas, I had mouth sores so citrus hurt, and I generally don't drink tons of alcohol, so that was cool to avoid. Unfortunately, because of the mouth sores, I lost my appetite and lost almost 10lbs in one week (don't worry, I've since gained it back)... Because of the weight loss, when I came back in for my treatment on Monday, they had a dietician come in to give me some options for healthy, high calorie foods (I was happy about this because I'd been eating a lot of high-calorie junk food, which was also making me sick since I was used to a healthy diet...) When she came, she also brought with her a list of foods that caused interactions with the oral drug I'm on. The list she had was MUCH longer than the list I had originally received, and includes things that are much harder to avoid. No foods that have been fermented or aged in any way (no alcohol, cheese, yogurt, soy sauce, ripe fruit, milk close to its expiration date, sausage, pepperoni, salami) and nothing that's been processed (lunch meat, meat treated with tenderizers, gravy, meat stock/broth, etc.) as well as a variety of things such as raspberries, avocados, chocolate, and caffeine (all of which I'm very disappointed about). Plus, I had to avoid all of those foods two weeks after I finished the drug - basically 3 out of 4 weeks of each cycle. We were immediately worried because I've been eating LOTS of those things and we were afraid that they had messed with my chemo.

Fortunately (sort of), we found out that while they won't mess with the chemo, they will cause a variety of other side effects that I'd been experiencing, but had no idea why - high blood pressure and plus, tingling in my extremities - all things that are kind of worrisome. So now I'm on a pretty careful diet of basically fresh veggies and chicken, with some extra stuff thrown in every once in awhile. I'm happy that I can still eat ice cream, because I'm worried that I'm going to lose more weight while I'm basically on this low-calorie diet for the next six months or so. The dietician gave me a bunch of high-calorie snacks and shakes I can make, which all sound pretty delicious (lots involving peanut butter, milk, and ice cream - I can't complain about that!)

Finally, I want to thank the Ross family for the BEAUTIFUL bouquet of flowers I came home to on Monday evening - they still look amazing, and my room smells fantastic... the smell and the flowers are wonderful to wake up to every morning! Thank you so much!

Also, I want to send good vibes out to Tom and the rest of the Jaworek family - Tom had his big surgery Wednesday, and Jacqueline called to say he was doing well, but I'm thinking of all of you and looking forward to seeing you guys soon!

Lots of Love,

ps - for all of you up in the Cleveland/Berea area, I'll be up at T in the P for a week or so starting August 2 or 3... give me a call/send me a message so we can get together!

Thursday, July 2, 2009

At the Opera...

Hey Guys,

Today I decided I'm going to do an entry about my summer job! I keep getting lots of questions from all you guys who are out of Cincinnati wanting to know how it's going, what I do, etc...

My official "title" is the Rehearsal Department Intern, which is an internship in the Production Department.

As the Rehearsal Department Intern, mostly I deal with scheduling - I work with Stephanie (who is the Production Coordinator) to obtain, write, publish, and distribute the schedules for any events, meetings, rehearsals, etc. that occur throughout the season. Usually what happens is that the Stage Manager of a particular production will bring the calls for the next day to Stephanie and she will put them into the schedule format. After this (as long as there are no last minute changes!) I take the draft of the schedule to Glenn (the Director of Production) and Marcus (the Director of Artistic Operations) to have it approved. Glenn looks for things like crew hours, space issues, and "production" based problems, and Marcus checks the artists' hours to make sure that no one is rehearsing more than their contract allows.

After Glenn and Marcus approve the schedule, I get to make enough copies of the schedule for everyone in the company - from the business side to the artistic side to the production side to the artists themselves, almost everyone who works for the opera gets a copy of the schedule in some form, and I get to pass out alllllllll of the hard copies.

For the rest of the day, I sit at a vanity (seriously, it's a counter in a dressing room with a mirror surrounded by lights...) in an "office" that I share with Stephanie (my boss)... we answer phones, answer questions about the schedule (and all sorts of random things) from artists, etc. ...

During performances, mostly I sit in my office, but people are always coming to visit - some of our chorus friends, Jared (the Associate Artistic Administrator) and his assistant, The Other Lauren... All kinds of fun people - we always have people coming and going, which makes things pretty interesting once we've gotten the schedule out for the day...

I've only got a few weeks left here, but so far it's been one of the best experiences I've ever had. A couple of summers ago, I sang with the opera chorus, and I had no idea how much work went into the rehearsals, etc.... Now I hope that when I was in the chorus that I was kind and courteous to all of the staff members! yikes!

On another note, I'm totally going to plug AINADAMAR (click on the link for the Cincinnati Opera's website & more info) for all you people who are here in Cincinnati - it's a FANTASTIC modern opera about the life of Spanish playwright Federico Garcia Lorca, Margaret Xirgu, and a few other key players... It's in Spanish and only 90 minutes long, plus the music is BEAUTIFUL - there's a guitar and a flamenco singer. It's completely different than any other opera I've ever seen before. If you've never seen opera, or if you've seen opera but not enjoyed the length/plot/music, AINADAMAR is the perfect opera to come see... 7/9 and 7/11 at 7:30 with a HUGE dance party in the ballroom after the 7/9 performance... send me a message or give me a call if you want tickets at half price!

Also my hair is coming out for real now... every morning for the past couple of days, I've been waking up with a liberal sprinkling of hair all over my pillow - I'm afraid to wash it because I'm worried it's all going to come out at once! My wig is getting it's last styling this Thursday, so I'm hoping a reasonable amount of my hair will stay in until then so I'm not walking around with what my mom and brother call "leopard hair"

Finally, I wanted to thank everyone who has sent me cards/gifts/etc in the mail... I have a whole shelf in my room now with beautiful (and some hilarious) cards that people have sent me... Thank you guys all so much for your support! I really appreciate it A LOT!

Lots of Love,