Monday, June 29, 2009

Hair, Hair Everywhere

Hey Guys!

Two big things... I got my wig, and I decided to cut all of my hair off...

I went to Allusions on Friday and picked up the wig that I had ordered two weeks ago - it was supposed to look pretty much like my hair - red and curly, with a little bit of brown at the roots.

When I got there, the hairdresser (wig dresser?) piled all of my hair under a wigcap with a LOVELY chipstrap underneath :

As much as I loved this look, I REALLY wanted to try on the wig.

It was so weird seeing it being carried around and laying on a table - it kind of looked like a little animal.

Anyway, the wig was so soft! It feels just like hair (probably because it's made out of human hair) and the scalp is a little latexy feeling so it was pretty much like skin.

When she put the wig on, I could believe it! It was damp when I tried it on, and at the time it looked just like my hair (when it was wet) - it fit perfectly as well... It was a little puffy on top because it couldn't sit right against my scalp (because I'm not bald yet), but otherwise it didn't even look like a wig!

The wig dresser did a little bit of trimming so the ends would be even, but I decided that I wanted it to be a little bit longer than it has been recently (more like my hair always has been), and that I'll probably have it cut shorter once my hair starts to grow back.

We were really happy with it, and all was well until we got home and it dried completely. I was at work, but my mom was keeping an eye on it and noticed that when it was dry, it was a little off.

We had agreed that they would do a pretty bright red (like my hair normally is) for the all over color and a little bit of brownish (my natural color) for a little bit of root... It had looked like that in the salon, but when it was dry, my mom noticed that they had confused the colors - the base was brown and the roots were red. Also, it had been wavy when it was damp - much like my hair is. I'd assumed that as it dried, it was going to curl up (like my hair does). However, that wasn't the case - it stayed wavy.

I called the salon back and they told me they'd do what they could to fix it - I have another appointment on Thursday so they can hopefully re-color and curl it... More on that when it happens!

Saturday was a big day as well! I had decided that once I had my wig, I was going to cut my hair short so that when it started falling out for real (it started falling out a little bit a few days ago, but has kind of stopped for the moment) it would be less traumatizing and messy. Instead of going and paying for a haircut, I decided that I'd have my mom give me a buzz haircut.

I called a couple of my friends who live closeby - Molly, who I've been friends with since we were 1; James, who I've been friends with since high school; and James' mom, who is hilarious and friends with my mom...

My mom had wanted to make mimosas, (since it was Saturday morning) but we decided against that since I had to work that afternoon AND I wasn't sure if alcohol and haircuts should mix...

And now... here is the ridiculous mini-slideshow of photos that my dad and my brother took during the process (most of them are self explanatory)


Thanks so much to Molly & my mom for giving me what turned out to be a really fantastic haircut...

although... now that it's all cut off, it's stopped falling out! i can't imagine it's going to stay in much longer, but we'll see...

Tuesday, June 23, 2009

and so it begins...

Well guys,

it looks like this treatment ended up being a little worse than the previous one - I was especially disappointed since yesterday was my birthday - I had hoped that since it was supposed to be a two-hour appointment that I'd be able to maybe go to dinner with my family and then meet up with some friends this evening.

It all started out pretty well - I didn't have my usual doctor because she wasn't working until later (she eventually came in to say hi, but more about that later). Instead another guy, Dr Weiss, came in to do a quick exam and sign off on all of my drugs. He was really cool, and talked to us about the bands he's in and was happy to talk to Andrew about South Jordan's recent managerial successes.

My nurse this week was a little slower, which was annoying because it took MUCH longer to get started than it should have - but from then on, we tried to make sure to keep on top of things so that as soon as the chemo was started we could move through quickly.

and some exciting news! Dr. Adams had told me several times NOT to keep touching the lump in my neck because sometimes lumps take a long time to shrink and that continually feeling it would just be aggravating and nerve-wracking. However, being as impatient as I am, I felt it a couple of times throughout the week and each time I thought it might be a little smaller (but was also figuring I was probably just imagining it). BUT! When Dr. Adams popped in later on her rotation to say hi, she did a quick feel of all of my lymph-node areas (especially my neck) and did a little cheer! So, even though I'm pretty sure that the enlarged node in my neck isn't gone, it's definitely SIGNIFICANTLY smaller! I'm really happy to not be able to feel the Hodgkin's anymore - that was really bizarre, knowing it was right there under my fingers. I'm also extremely happy to know that the chemo's already taking effect! I was sure that I'd have to wait several weeks to see any real/physical proof that the treatment was working.

On the other side though, I think today is the day that my hair started to fall out a little. Not in huge clumps, but I had noticed that individual hairs had been falling more frequently this morning, and then when I was in Target, I reached up to grab what I thought was a stray piece off the back of my neck only to find that it was a small handful - and another small handful a couple minutes after that. So far, it's only been that tiny bit - but even that I wasn't expecting to happen so soon! My mom thinks it's probably because of the week of oral chemo I was on - even though I've only been in the hospital twice for treatments, I'd basically had 8 days of chemo in a row. I'm crossing my fingers that it only falls out slowly until I can pick up my "cranial prosthesis" (wig) on Friday morning!

Yesterday and today have been really weird days. Mostly, I've been feeling ok - some sporadic nausea that I've been taking some really great drugs for, so that hasn't been too bothersome. By far the weirdest thing has been just a sense of being unsettled - I had wanted to go into work today, but between my mom and Stephanie, I was convinced that staying home was a better idea. My mom also persuaded me that going out with my Cinci friends for my birthday should probably wait until Wednesday night. It's frustrating because I only feel a little sick, but I have a whole feeling like something just isn't right. I can't wait til the end of the week so hopefully I'll start feeling like normal again.

Other than the slight nausea and a general feeling of strangeness, I have gotten the most bizarre taste in my mouth. I'm really hoping this goes away soon! It makes everything taste slightly sour, even when I'm just sitting here typing. My mom was prepared for this and (at the recommendation of several friends) has stocked up on peppermint altoids - good for nausea AND this weird taste. I made sure to rinse my mouth out before dinner - that helped things taste basically normal, which was GREAT because my mom made the most delicious chicken and my dad and brothers helped with what ended up looking like Thanksgiving. It was the first entire meal I've actually had the appetite to eat in almost a week - and much more nutritious than the boxes and boxes of cartoon Kraft Mac&Cheese that I've been craving (for some strange reason)

As for my birthday yesterday, despite being a little sick and tired for most of the day, it was really nice to be able to have a day and lay around with my family (and cats!) My dad went out and got some Graeter's ice cream because I was nervous about mixing nausea and cake, and I opened some presents - one thing I love about my family is that they're always so great about knowing the right things to pick! Brian's gift was especially thoughtful - he took a professional-looking "portrait" of Winnie (the kitten) to go with a similar picture of my older cat (Madeline) that I have in my apartment at school. He even picked out a frame that matched and had it setup for me when I woke up from a nap! As an extra surprise, my Grandma sent me a quilt she made - it's so beautiful! She had mentioned something about making one a few weeks ago, but I had no idea it was going to be finished so quickly! She used really colorful patches backed with fleece... it's SO WARM and adorable! (at some point I will post a picture of me under the quilt - probably with a cat)

I want to thank EVERYONE who called and sent me messages yesterday - my voicemail isn't working (I need to reset it), but I do have a list in my received calls box to call back! So thank you all very much and don't worry - You'll be hearing back from me soon!

Lots of Love,

Saturday, June 20, 2009

First Treatment (with photos!)

Hey Guys!

Sorry it took so long to get all of this posted - I just got a new laptop & I've been playing with it & trying to figure out how to get everything to work (including loading new pictures)


Back to Monday - I had my first chemo treatment, and it went just about as smoothly (maybe even more so) than I had anticipated! Unfortunately, I had to get there at 7:30am, which kind of sucked, but later on in the day I got to nap, so that made u
p for the missed morning sleep.

I was surprised at how quickly I got taken back to my room - everything was all setup and waiting for me, with a little bucket that I referred to as my "Welcome Basket" - with all of my IV paraphernalia and bags of fluids that they were planning on giving me that day.

I met with my doctor and the fellow who would be following my doctor & helping her keep track of everything. In a coincidence, the fellow's name is Sarah and we happen to have the same birthday! So this coming Monday when I go in for my treatment, I'm planning on bringing a couple of cupcakes for a little morning celebration (and hope that I can get out early enough to have a real celebration!)

The most nerve-wracking part of the entire day was having my port accessed. Earlier in the morning, my mom had put some numbing cream (Emla) on it so that the skin over my port would be completely numb before I was accessed, but since I'd only had it put in a few days before, it was a little swollen and raw and I was really afraid it was still going to hurt.

However, it was so quick I probably wouldn't have even noticed it if I hadn't had to lay in a kind of awkward position. The nurse was fantastic - she was only a couple years older than I am, and she was really cool about getting everything done quickly. Basically, when she put the IV in my port, it just felt like she was pushing down on the cap of a jar that had already been opened (which was a weird but kind of cool sensation under my skin):

After I had my port accessed, it was a little sore and would be sore on and off for the rest of the day, but my nurse told me that it had to do with the fact that it was new and tender - she's right... it's been over a week now since I had it put in and now I basically forget that it's there...

For the rest of the day, I mostly just hung out with my mom and my brother. My brother had been at a sleepover the night before, and was a HUGE source of emotional support from his place on the recliner next to my bed:
He basically slept the entire day! I was extremely jealous...

One thing that I wasn't expecting was how easy the treatment was. When they came and changed my bag from saline fluids to the chemo, I was expecting to be able to tell the difference... Maybe start having some side effects right away or getting more tired, but for the most part I couldn't tell the difference. Until I started sweating. That was the only side effect that I experienced for the majority of the day - I felt like I was going through menopause and having hot flashes! I was sweating SO MUCH and was really happy that I wore layers. The sweating wasn't bothering me too much though until I had to get a shot in my bottom (which didn't hurt at the time but felt SO bruised for several days afterwards). It was totally worth it though because the shot makes it so I won't have my period for three months... I'm thinking people should ALWAYS have this shot!

Another interesting thing about being at Children's is how accommodating everyone is - the nurses and doctors are so kind and were really great about explaining everything to me, not just assuming that if I wanted to know something that I'd ask a question. A lot of the time, I didn't even know that I wanted to ask a question until they had already answered it! It was awesome, too, that I had a room service menu that I could order off of and they'd bring me almost anything I wanted within 45 minutes. The menu was HUGE and had everything from cereal and gummy bears to spaghetti dinners and pretty much anything you can think of - especially fun kids food like teddy grahams and chicken nuggets... I took full advantage of that and ordered two lunches.

I also got to leave a lot earlier than I had been anticipating. I had assumed I'd be there til about 8pm, but was home by about 5:30 - it was great, because I was able to have dinner at home and relax a little. The doctor and nurses had also been preparing me to get pretty sick that morning and the next day, but I felt almost perfectly fine. I had a little bit of nausea, but they gave me some great medication called Zofran that took that away almost immediately.

I was feeling so great for the first couple of days after I had my first treatment, but I probably should have looked a little closer at what I was eating. I'm taking a couple of oral drugs, and I knew the oral chemo had several food interactions, so I was being very careful to stay away from cheese, bananas, coffee, soft drinks, wine, and beer (the coffee, wine, and beer are especially hard when I'm working with so many fun people who I love going out with) - but I hadn't realized that I had to stay away from spicy as well. I made the terrible mistake of having some incredible pad thai that my wonderful boss Stephanie brought for dinner on Wednesday, and unfortunately, I'm still paying for it. I was supposed to start a mouth-care regime when I had my first treatment, but I'm pretty sure they forgot to give it to me until I called my nurse on Thursday because I've started to develop mouth sores. They're not sores yet, but they're raw spots all around my tongue and at the back of my throat. They weren't expecting me to get them so soon, but since I LOVE spicy food and didn't know to stay away from it, they've started earlier. I'm on something now, but am very disappointed to be having to stick to a bland diet until it all heals up (my mom assures me that this will happen soon, and if I stick with my mouthwash, they hopefully won't be a problem again). You'd be surprised at how fast a mostly ice cream and milkshake diet starts to suck.

Another side effect I've started seeing is the weight loss - although I can't tell if it's from the chemo directly or from not wanting to eat because of the sores. I'm afraid that they're going to put me on some kind of special diet because I've lost a few pounds since Monday, but I guess things could be much worse.

I've also been keeping up at work really well - I love my job and I've been making some new friends with the chorus people that I didn't know before and with some of the other interns. I want to give a HUGE thank-you to Deb Van Engen and all of the lovely chorus members who gave me a mani-pedi from Mitchell's yesterday, along with a very sweet card. You guys are so fantastic, and thank you so much for thinking of me!

That's basically all for now - I go back in on Monday, and will definitely be updating sooner! It'll be my birthday, so hopefully things will be a little more festive! Also since I've been less tired, I'm planning on attending more opera events, so look out for some fun tidbits about all of the crazy people I encounter coming in and out of this building...

As a sign-out story, I'll give you a quick story about a character I met last night.

As the rehearsal department intern with the opera, I do a lot of sitting in a converted dressing room and answering phones and questions. Last night, after the piano tech was over and the production people were having the post-rehearsal meeting, I was approached by one of the older first-time supernumeraries. This is not an area which I have any answers for. He begins by arguing with me about the call time for the Dress Rehearsal tonight. When I finally convince him that he does indeed need to show up at 5:30 instead of 6:30, he proceeds to ask me if he will be allowed to bring his clothes and his wallet into my office tomorrow for me to hold onto for him. I explain that that is something he will have to discuss with the Supernumerary Captain, and that I am not responsible for his belongings. Finally, he leaves me with this lovely mental image: he asks if he will be allowed to have his makeup applied in his underwear, and then "hang out" in his underwear until he is required onstage since his costume is extremely hot.

I had no words.

Talk to you soon,
Lots of love,

Tuesday, June 16, 2009

Done with Day 1

Hey Guys!

I got home from the hospital MUCH earlier than I expected Monday and so far I'm feeling pretty much fine.

I have some pictures that I will upload later today, but I've been getting texts/facebook messages so I wanted to give everyone a quick message to let you all know that everything went well!

Before I load the pictures and let you guys know what all went on Monday (I'm waiting to get my mom's camera from her so I can upload said pictures), there is something that I want to share...

I mentioned briefly before that Dr. Adams (my oncologist) had decided to change my course of treatment based on a newly-completed study at Vanderbilt - it hasn't been published yet, but over the loooooong course of study, they found a new treatment that had a 98% success without relapse rate for patients who had almost the exact same stage and location of Hodgkin's that I do.

Unfortunately, this treatment is much more spread out - instead of the three 21-day cycles I had originally been planning (which would get me back to school on time in the fall), I now have to do six 28-day cycles (which means I'm going to be missing fall semester at BW). As much as this sucks, I'm glad it has such a high success rate, but I'm going to miss all of you BW and Oberlin people A LOT so PLEASE feel free to come visit whenever. Since I'll only have two "in hospital" treatments a month (on days 1 and 8 of each cycle), I'm hoping to be able to come up and spend a week or so at a time with you guys up there so I don't miss out on too much of my super-senior year...

I wanted to give you all an update on that, and there will be more about my hospital visit soon!


Saturday, June 13, 2009


Hey Guys,

Here's a little bit of news that I hadn't put in my last entry - Wednesday, I had my port put in... for those of you unfamiliar, the port is a small compartment (inserted under the skin) with a catheter that is inserted into a vein (or in my case, the heart). The port helps hook up IVs more efficiently and less painfully and also helps the drugs be distributed throughout the body more quickly.

if you want to know more, here's the wikipedia link

AND here's a picture of a port (without a person)

usually the surgeon puts the port in the chest, right under the collarbone... However, I was able to get the surgeon to put my port under my left arm, so it's hidden right under my bra! So basically, I'm just going to have a tiny scar under my collarbone where they threaded the catheter into my chest... and when I woke up, I had a nice little heart-shaped bandage over the incision! (Thanks, Dr. Brown!)

That's all for now... I start treatments on Monday, so I'll definitely have lots more pictures and stories to share that afternoon!

Thanks to everyone who's already left me messages, it's great to hear from all of you!


Friday, June 12, 2009

Catch-Up Time

Hey Guys,

I'm pretty sure if you're reading this, you basically know what's been going on. BUT just in case, I'll do a little catch up.

Two(ish) weeks ago I went in to have a lump on my neck biopsied... a few days later I got the news that I had Hodgkin's Lymphoma (very treatable but still scary...)

Last week, I met with my oncologist for the first time (Dr. Denise Adams @ Children's here in Cincinnati) and found out that I am at stage IIA, which means low-risk with relatively small tumors/enlarged lymph nodes and no secondary symptoms. Originally the plan was to do nine weeks of several low-dose chemotherapy drugs, but today I got the news that Dr. Adams has changed her mind and I'm going to be having about four months of therapy with a couple more drugs than originally anticipated. Unfortunately, this means that I'm going to be missing a significant portion of the fall semester (sorry, BW people!) - but hopefully I'll be able to do some correspondance work and keep up on classes even if I'm not there...

As unhappy as this makes me, it's a little more comforting to know that I'm going to have more treatments because I was slightly nervous at having so little chemo... The new course of treatment Dr. Adams is perscribing is better for cutting down the risk of relapse in people who have enlarged lymph nodes in the chest (like I do)

On a higher note, today I got to order a wig! My mom's friend Sue set me up with a couple of wonderful ladies at Allusion's in Kenwood - a hair loss treatment facility that works especially with women who have lost their hair due to chemotherapy. In two weeks, I get to pick it up (pictures will be posted) - it'll be made out of human hair, dyed and permed to look like my own hair... Will you guys even be able to tell the difference??

I'm also going to get a little help from the hair and makeup dept here at the Opera - James Geier, the wigmaster, has offered to help me with false eyelashes and drawing on eyebrows so I can look as good as possible through the entire process...

SO all in all, I'm hoping to get a lot of valuable lessons out of this experience (good, bad, and funny) and I plan on posting most (if not all) of them on here to share with you. I'll keep trying to be pretty vigilant about updating (especially when I'm bored) and providing pictures to accompany posts (as soon as I figure out how to do that...)

I'm going to post the link to this blog on Facebook so I can keep as many people updated as possible... Also, don't be afraid to pass the link along to people who I may not be connected to on Facebook!

Lots of Love,