FINALLY DONE!

Hey Guys,

Sorry it's taken so long to get this up, but my final treatment really kicked my butt! I barely got off the couch at all on Tuesday or Wednesday, and was in all day Monday because we had a meeting and then for some reason things kept getting delayed.

Instead of having my appointment at 8:30 am (which is when my appointments usually were), I had my appointment at 2 pm so we could meet with all of my doctors (and Brian's doctors) to kind of figure out a plan for the future.

Originally, they put me in the TINIEST room possible - an infusion room, which is usually used when a kid is just getting a quick infusion of something (an hour or less). Check out how crowded my giant brothers and my mom were in the corner of this tiny, tiny room (keep in mind I'm sitting in a dentists' chair barely a foot away from them!)

We had to fit my dad (who was out in the hallway waiting) plus three doctors and at least one nurse in the room for the meeting, so there's no way that was going to work! Fortunately, they were able to move me within a half hour so we didn't have to suffocate in the tiny room!

Part of being treated at Children's is that they have a great Child Life department that brings games and toys and gifts to kids for special occasions. For example, on my birthday they brought me a manicure set with hand lotions and really nice cream. And for my LAST CHEMO, they brought me a giftcard to Walmart so I can get myself anything that I'd like - I can't wait to go pick something out!!

I spent most of the afternoon reading a really fantastic book called Forever (I can't remember the author, but you should definitely try and find it... SO GOOD!)

My mom and I had eaten before we got to the hospital, but expected to be in and out pretty quickly (which didn't happen) so we ended up getting pretty hungry. My mom ran down to the cafeteria and brought back all kinds of "party" goodies that we wouldn't normally eat - chocolate covered donuts (my favorite snack) and cheddar chex-mix type stuff. I had to hurry up and eat mine before I started feeling nauseous, so I didn't savor it as much as I should have, but it was delicious nonetheless!

(yes, I am wearing a Where the Wild Things Are tshirt...)

As I was finishing up, Dr. Adams and Debbie came in to congratulate me - Dr. Adams even sang and did a little dance, but I totally wasn't expecting it, so I didn't have my camera ready, otherwise there would be a wonderful video of my oncologist doing her "Happy Last Chemo" dance!

(this picture was taken just post-dancing)

Starting to feel pretty sick from the end of the drugs, and totally ready to go home...

It was so amazing to get deaccessed for the last time - I think the only thing that will feel better will to finally get my port taken out. My nurse (Katie) was super-cool and just pulled the tape off as fast as she could (I've never had a problem with the tape hurting so I always get annoyed when it takes SO LONG for them to pull it off slowly!) and she also pushed the flush really fast so that it wouldn't taste as bad as long (the flushes they use make my mouth taste like rubbing alcohol and alway push me close to the edge of vomiting)

Monday night, I basically laid on the couch and slept it off - I was feeling pretty awful and not really wanting to go anywhere or talk to anyone. Apparently people were calling to see how I was doing, but I don't remember anyone calling!

Tuesday I felt REALLY awful, but I went to my piano lesson anyway, which was a little bit of a disaster. I played OK, but since I was on so much medication for the nausea, I couldn't quite focus on anything that my teacher was saying. I'm just practicing extra hard now to make up for it for next week!

Tuesday night I also noticed that my eyebrows and eyelashes started falling out A LOT! I'm hoping that they won't all fall out, but they're falling out more and more after each shower. The good news in, my hair will (hopefully) start growing back in soon, so there won't be much of a gap for my naked eyes...

Tonight I'm on my way out to celebrate a little bit downtown with some friends, so hopefully I'll be posting some pictures of that in the next few days!

Thank you all for all of your support!!!

Lots of Love,

Lauren

SO CLOSE!

Hey Guys,

So I'm thrilled to announce that I just took my last dose of Procarbazine (my oral chemo) - the final four pills! I've got a week more of steroids, and then I'll basically be done with all of my pills... Tomorrow at 2pm I have my appointment for my last IV chemo, and that will be it for the "hard drugs" (haha)

I've had a really great weekend - I got to spend a bunch of time with some of my friends, and even got to hang out with a kid I haven't seen since high school (normally I don't particularly like running into some of the people I run into from high school, but sometimes it can be a lot of fun!)

Friday I didn't really get up to much, because I wasn't feeling so hot and James was pretty tired after work, but Saturday was a TON of fun! William and I went over to the Cincinnati Nature Center, which is this amazing park with old log cabins and abandoned buildings and ponds to explore. We spent a good amount of time running through fields and climbing trees (something I haven't done in SO LONG). I'm disappointed that I'd left my camera in my car (and Brian had to drive it) so I didn't get to take any pictures - it would have been the perfect day! The sky was so clear and it hit just above 70 - perfect weather! After I got back from the park, my dad and I went out and had some dinner - everyone else was out (Brian at rehearsal and my mom picking up Andrew from Bloomington), so we had a lot of fun at Applebee's (where I hadn't been in years, probably). I ordered the "small portion" of steak, and I'm glad I did, because I got a giant plate full of steak (well, a small steak) and SO MUCH steamed zucchini. I'm always happy when the "seasonal vegetable" at restaurants is steamed zucchini or broccoli or something, because then I can fill up on veggies and not eat so much bad stuff. Plus steamed or grilled zucchini is one of my absolute favorite foods. When I'm in my apartment on my own, I'm pretty sure I have zucchini cooked some way with almost every meal (I recently discovered via Food Network that you can shred zucchini into super-delicious pasta - one of my new favorite things to do!)

Saturday night after James got off work, I drove him, William, Stewart (James' roommate from college and someone we went to high school with) out to Newport to Bar Louie for drinks. I don't think I've really seen Stewart since high school, so that was pretty cool to get to hang out with him! I like going to bars with a bunch of guys - it's a totally different experience than going with a bunch of girls. It's always interesting to see the guys' perspective bar culture...

Today I woke up surprisingly sore from my jaunt in the park yesterday - I'm so out of shape, and hadn't realized it until I exerted a little bit of energy to run around! I'm actually pretty embarrassed about how tired I got and how sore I was this morning! I spent most of the day just hanging out, but this evening my mom & I went to see the show that James has been working on at Playhouse in the Park. It's called Three Sisters, and if you're in the Cincinnati area, you should definitely go check it out! I was kind of worried that it would be over my head, but I actually enjoyed it a lot! It's not too long, and it's pretty dramatic so there's a lot to pay attention to.

I'll update you guys tomorrow and let you know how the FINAL DAY goes! Hopefully I'll also find out when my scans are and when I can get my port out! Dr Adams said as long as the scans are as good as they were the last time, I should be able to get my port out within  a week of having them done, which means probably sometime the week before Christmas (I'm waiting to have my scans til finals are over at school so I don't miss any more class).

Goodnight!
Lots of Love,
Lauren

Almost Finished!

Hey Guys,

So today I had my second to last treatment, and it was pretty rough. I started getting nauseous on my way to the hospital - I think it was a psychosomatic thing. Just anticipating the treatment is starting to make me feel sick, so that makes me even more happy that I'm almost done.

For some reason, the IV kytril didn't work getting rid of my nausea, and I had hoped that if I ordered lunch it might go away, but no luck. It took a few different pills (including zofran and pill kytril) and some ginger tea before I started feeling relatively normal.

I got a little bit of a surprise today - when my dad stopped by to drop off some lunch for my mom, he ran into the dad of a girl I graduated from high school with. Her mom was diagnosed with breast cancer recently, and they were at Children's because their daughter who's Brian's age has been having migraines. Once she was done with her appointment, they stopped by to visit, which was really nice! We got to hang out for a little bit, and it was good that they stopped by because I had wanted James to visit, but he wasn't allowed since the flu restrictions were put in place.

Child Life (the program that supplies toys & things to kids in the hospital) has kind of stopped visiting me since I never ask for anything from them. However, we were in Kroger the other night and found the most AWESOME Disney Princess coloring book that came with 600 stickers. I'm in the process of coloring pictures for all of my friends... I forgot how much I love coloring!!!

This weekend I went up to Cleveland and had a really great time seeing all of my friends - Marina came over on Friday night and stayed in my apartment. We went out to dinner with some of the girls, and then watched The Proposal and drank wine with Erin. Saturday morning, Marina and I had brunch at First Watch in Crocker Park and visited the farmer's market. I ended up going over to Oberlin & hanging out with Matt for a little bit, but I didn't get to see him long since his parents were in town. That night, I FINALLY got to hang out with Josh - it was so wonderful to see him after so long! We ended up at the bar (where another drunk guy kept rubbing my head!) and then went back to my apartment with Erin and watched The Matrix Reloaded (which is a terrible movie). Sunday I got to have lunch with Gene and then drove home. We had dinner at my grandparents, which was SO delicious - ham with green beans, AND a  roast, plus tons of veggies and an apple tart and a pumpkin pie.

I can't wait for the week to go by so I can finally be finished with all of this nonsense!!!

Lots of Love,
Lauren

Halloween pt. 2

Hey Guys,

Here are the rest of the pictures from my Halloween at Home... Enjoy!

Our fall trees are so beautiful...

the bushes in our front yard grow fall berries and turn BRIGHT red... such a fantastic color!

my mom's hydrangea...

the only red flower in a bunch of green leaves...

holly! I can't wait for Christmas...

my mom's last rose!

so many birds!

wonderful Halloween sunset

Finally, two weeks from today I have my last treatment! Unfortunately, I can't bring anyone with me (except my parents) because Children's has instituted a "No Visitors" rule because of the flu, but we can all celebrate later that week! I can't even believe it!

Lots of Love,

Lauren

I Can't Think of a Good Title...

Hey Guys,

I don't know if I've written about this before, but I STILL haven't lost 100% of my hair... I had a little bit of fuzz left, and it's super annoying! My mom has to shave my head every few weeks, and it's always a little bit of a terrifying experience - I don't know how men shave their heads every day (maybe they use an electric razor?)

Anyway, I'm pretty sure the only person I would ever trust to shave my head is my mom - but even so I get really nervous. We always make sure to use a new razor, and she uses some kind of astringent on my scalp with copious amounts of lotion to make sure that I don't get razor burn afterwards. So far, no major bleeding incidents - just a couple of tiny nicks here and there (nothing that even shows up unless you look really, really close) so I'm pretty impressed with my mom's head-shaving skills. I'm hoping to have her do it again tomorrow, so be on the lookout for some pictures of the process in the next couple of days!

In other news, Planet Cancer just announced that they are officially teaming up with the Lance Armstrong Foundation - even going so far as moving into the same office building as LAF! I think this sounds like GREAT news, because with these two foundations working as one, it'll be even easier to reach Young Adults with cancer that have needs (whether it be financial, medical, general support, etc...). I'm lucky enough to have insurance, access to amazing medical facilities, and a huge network of support, but not everyone has that. It'll be really fantastic to have one GIANT organization to help provide as much as they can (you can go read more about it at the link above).

Also, Holly was awesome enough to send me a link to her friend's science blog, Urban Science, where she recently wrote an article about H1N1. I checked out the article (pt 2 coming soon), and I think you all should as well! Holly's friend is a Doctoral Candidate in Biology, so she definitely knows what she's talking about (not just some random person posting about things they don't really understand). The rest of her blog is really consumer-friendly as well - it's easy to understand AND there are some really pretty pictures!

I've been feeling kind of crappy lately - lots of nausea and heartburn (as well as a few unmentionable issues you all probably don't want to hear about!) and my taste buds are still all wonky. I'm hoping that will go away in a few days, because I'm expecting to be out of class all next week and my mom and I want to go to Rouster's (an apple farm) and I want to be able to taste all the apples and the homemade cider (this is why fall is so amazing - I love apples!). I've also been having this really strange thing happening in my feet - my muscles will tense up compulsively and it wakes me up at night, so I haven't been sleeping too well. It's kind of like a Charley Horse but in my feet... I used to get them very occasionally before the chemo, and my dad gets them sometimes, but now I get them ALL the time! I've been wearing heels more lately, so I don't know if it's the heels or the chemo that's making them really bad. I talked to Dr. Adams, and she advised that I eat more potassium - I can't eat bananas with my Procarbazine, but I've been trying to load up on spinach and broccoli. So far, no change, but I'm betting it takes more than a couple of days for the vitamins to start working their magic...

Finally, I want to post a little bit of a shout-out to some of the other writers of cancer blogs (especially the ones I've been following). It seems like everyone I discovered when I first got diagnosed is successfully finishing treatment now, soon, or has recently finished, and I want to congratulate all of the great success, especially to Chris (who had his last treatment today) and Jennie, who just celebrated a month post-treatment. Congrats, guys!

Lots of Love,

Lauren

ps check this out :-)

Vaccinations (and rants about not wearing masks)

Hey Guys,

It's flu season again (well, I guess it's been flu season for a bit now, but it just seems like everyone's recently started to get sick) Knock on wood, I'm feeling pretty good - and I'm planning on keeping that way at least for another month so I can FINISH!

Anyway, I know a lot of people are really on the fence about vaccinations, etc. Almost every doctor will tell you that vaccinating your kids is perfectly safe (actually safer than NOT) and (I'm pretty sure - correct me if I'm wrong) kids legally have to be vaccinated before they can attend school in the US (excepting religious or "spiritual" beliefs). I know that some celebrities (I'm looking at you, Jenny McCarthy) are on this no-vaccinations kick, saying that vaccinations cause autism, etc. I get so mad every time I hear about this, because it seems like just because you (as a parent) would rather listen to a celebrity than a doctor, your kid could get REALLY sick and make other kids REALLY sick (babies too small to be vaccinated, etc...)

You might be wondering what all this has to do with me... I read this article on Slate Magazine today, and I never really thought about how unvaccinated kids could affect me directly. However, now that I'm a patient at a Children's Hospital, I'm wondering how many unvaccinated kids I come in contact with that could be spreading things to allllll the many immunocompromised patients at CHMC. It makes me so mad...

Another thing that makes me SO mad is coughing kids in hospitals NOT wearing masks. The new procedure at Outpatient where I get my bloodwork (and I'm assuming at Children's Main as well) is that if you come in even looking vaguely sick, you have to wear a mask. This is because so many kids come in with low immune systems that hospital staff doesn't want flu (or anything else) spreading and making the really sick kids even sicker. However, some parents don't seem to follow these rules... When I was coming home from my treatment Monday, I was stuck behind a kid and his mom - the mom was holding a mask and the kid was coughing all over his hands and running them up and down the walls... Another woman in front of us commented (pretty loudly) "This is a Hospital. That kid should be wearing a mask..." The mom didn't even flinch or acknowledge the comment. One of my nurses at Outpatient put it best: she told me that she has parents come in all the time who don't want to force their kid to wear a mask (because, let's face it, the masks suck) so she tells them "Your kid might get the flu and have a tummy ache and miss a couple days of school, but someone else's kid might be on chemo, and that kid on chemo can get the flu and die. Put the mask on your kid, because we don't want any dead ones." It sounds a little harsh, but sometimes that's the only way to get through to people. A lot of times parents just don't realize that not every kid they come in contact with is as healthy as their own.

For everyone's sake this flu season, GET THE H1N1 vaccine! Get the Seasonal vaccine! Help us sick kids have a better chance of NOT getting the flu!!!!

Lots of Love,

Lauren

Sick Sick Sick

Hey Guys,

I had my 10th(!!!!!) treatment yesterday - only TWO more (man, I can practically taste freedom). However, I've been feeling a lot more sick than usual... Sunday, I was super nauseous all day (which is unusual, because I don't generally get sick from my first treatment, and it had been almost a week since chemo...). Monday, I woke up STILL sick and was feeling pretty nauseous all through chemo (which only lasted about 2 hrs - thank God!) and came home realllllly nervous I was going to throw up in the car (I made it - whew!)

When I got home, my mom made some really delicious baked chicken with some pasta with mushrooms & spinach (sooo good for my poor tummy) and I spent the rest of the evening on the couch with TWO cat nurses. They don't particularly make it any better (actually they make it a lot hotter!) but they're sweet and the purring is comforting...

This morning, I was definitely still sick - I was disappointed because last cycle I had felt fine this Tuesday. I ended up not making it to my Song Lit class (which sucks because I love my professor!) but I did make it to my piano lesson. I enjoy my piano lessons a whole lot - my teacher is either a grad student or a doctoral candidate who's only a few years older than I am. She's really understanding and fun to talk to, so it makes me want to practice more than usual! I have another lesson Thursday (a makeup), and I'm hoping I'll be able to make it to my lesson on Tuesday even if my counts are low (I'm thinking it will be OK since it's a one-on-one situation...)

I'm going to go lay down some more now - I went out for dinner and now my stomach is turning! I'm crossing my fingers that I'll make it to the end of my treatment without ever throwing up, but yesterday's treatment isn't making it easy!

Also, my veins are kind of burning from the doxorubycin... it's making my chest feel really tight, which is NOT helping with the nausea. My whole chest just has this terrible feeling in it (like there's something wrong with my veins - I'm assuming that's just residual chemo still hanging around) and that's part of the reason I'm feeling so nauseous... UGH!

Lots of Love,

Lauren

1 more down, 3 to go...

Hey Guys,

I'm SO CLOSE to being done! Only three more treatments left!!!!

Today went really smoothly - my nurse, Anne, is the same one I had last time, and she's fantastic! Everything got started within about a half hour of our arrival (amazing) and she was so prompt at changing my fluids and my meds so that I hardly had ANY wait time - actually, I'm pretty sure that I didn't have any time where I was just sitting around waiting for her. The only time we really had to wait was when my last bag of fluids was finished and we had to wait for a different nurse because Anne had to sit in another patient's room for the first half hour of something. If the kids have bad reactions to a drug (like my little brother - his throat closed up after he started one of his chemo drugs) or if they're taking something particularly dangerous, the nurse needs to stay with them for a a bit to make sure nothing awful happens.

I slept most of the day, which was unusual for me - generally I stay awake and talk with everyone a lot, but I just couldn't keep my eyes open today! I was feeling a little nauseous in the hospital - the flushes that they put through my port after chemo makes my mouth taste like rubbing alcohol which always makes me feel like I'm going to throw up. So far, so good, though! I'm definitely going to bed early tonight - I'm exhausted after a busy weekend and then going out with James and his work buddies last night. That was probably a bad idea, but I never get to see James and his friends from the Playhouse are a lot of fun!

I also ran into a fellow "adult" patient on the hem/onc floor at Children's today. We didn't talk - he was in a wheelchair with a mask on and I was getting weighed - but we exchanged those little "what's up" nods. It's strange to see another big person amongst the sea of little bald kids (which can be really, really depressing - especially since Brian was one of those little bald kids at one point...)

I got an email yesterday from a girl (young woman?) named Tiffany - she lives pretty close to me in another suburb of Cincinnati (Fairfield, for you all in the area). She had Non-Hodgkin's Lymphoma six years ago, and was treated at a local hospital. Now she's involved with the local Leukemia Lymphoma Society chapter, and gave me some really cool information. She told me they're trying to start up a Young Adult group, which I'm really excited about! Lots of other cities have big YA support communities, but Cincinnati really doesn't. Hopefully that will take off and be something I can get involved with, especially when I move back to Cinci after I graduate in May.

She also told me about the First Connection program, which is a one-on-one support network for survivors to council/help newly diagnosed patients. From what I can tell, the pairs are matched up by age, sex, and diagnosis, which sounds really cool. There's a training session on October 24, so I'm really hoping that I can attend and help someone out (or even be paired with someone to council me!) I'm also in contact with a woman at Children's Hospital about their Children's Champions program, which is something similar, plus much more. I'd love to be able to volunteer at hospital events and even be on a committee to be a patient (or family) consultant. I'll obviously be gone for a few months in the spring, but it's most likely that I'll be back in Cincinnati for at least a while, so I'm hoping I can get more involved with things when I have some more time, and get started on them now!

To all of my fellow Cancer-Havers (I hate saying 'patient' because it makes me feel sickly), do you guys participate in any programs like those? If so, what kinds of experiences have you had? I'd love to hear!

Lots of Love,

Lauren

Guess Who's Back

Hey Guys,

I'm back from my jaunt in Cleveland, and it was really, really fantastic to see everyone! I spent most of the weekend with Tyler & Katie, with a little bit of time having some delicious brunch in Oberlin (of course! where else am I going to eat brunch?!?) and got to see Matt & Marina, which is always a good time...

My mom says Winnie cried a lot while I was gone - I'm worried about what's going to happen when I leave her here for spring semester (so she doesn't have to be alone in my apartment all day...). I also brought home all of my winter clothes, which is nice (because I haven't worn them in months) but also sucks because I hate winter! Fall is beautiful, but I'm NOT a fan of cold weather at all... At least I'll be in Cincinnati for part of it, which is good because it doesn't get nearly as cold as Cleveland (even though they're only 4 hours apart)

Anyway, I go in again tomorrow for another treatment (always lots of fun). Only four left, though! I can't wait to be done - it seems so close now!

I should probably go to bed now, since I have to get up so early! But I'm watching Knocked Up on E!, so I'll probably be up for a little bit longer...

Also, I wanted to thank everyone who's sent me emails in the past few weeks - it's really great to hear peoples' stories and get to know you all. Thanks so much!

Lots of Love,

Lauren

Intermission's Over - Time for Act II

Hey Guys!

Sooooo let's see... Saturday was the Survivor's picnic at the Cincinnati Zoo, courtesy of Children's Hospital. I feel bad because I was feeling a little grumpy all day (I'm not sure why - I also felt like I was on painkillers or something, but definitely haven't taken any in awhile!)

Anyway, we were able to meet up with some of Brian's old friends from the Little Star Foundation trips he'd gone on to Aspen and San Diego. We also ran into Debbie, my nurse, and Sarah, who is the fellow who works with Dr. Adams. She brought her boyfriend with her (who she'd talked about before when she would come to check on me in the hospital) and he was really cute! They made a great couple together, and it was really nice to see her!

We walked around the zoo for a bit - I'd wanted to do more, but I was super tired for some reason - I think it was the anticipation of starting treatment again on Monday. We did get to see some monkeys, some flamingos, the white lions, and a variety of bears. My favorite, however, was the zoo babies - a baby cheetah which was SUPER adorable (and acted just like a regular cat!) and a baby bearcat. Honestly, I had no idea that the bearcat was a real animal - I thought it was just something UC had made up to sound intimidating!

Me & Brian in front of a fountain on the zoo lake

(I cracked a lens on my favorite sunglasses so I had to make do with Brian's old ones - which are a little big for me!)

The zoo always has beautiful landscaping, so my mom likes to take pictures of it for ideas for our gardens... Sometimes she likes to put us in them.

The building in the back is (I think) the Reptile House... it's my mom's favorite building at the zoo...

I started treatments up again yesterday (yay....) and was a little bit surprised to be put in an infusion room as opposed to a chemo room in the Day Hospital. Mostly because there was a tiny, tiny half-bed type thing... not really a recliner, but not really a bed either. More like a combination of the two. I found out that the reason I got put into a room usually used for transfusions (kids only stay for an hour or so) is because there are so many kids who need to be in isolation rooms (the normal chemo rooms with a private bathroom so there's no contact with outside people) that they had to put the "less critical" patients (ie me) into the infusion rooms... which just have a public bathroom in the hall. This public bathroom was a little bit tricky to navigate connected to a giant pole, especially when I was getting so many fluids that I had to USE the bathroom every hour (or more) and parents from isolation kept using the bathroom (even though it was clearly marked "Patients Only") so sometimes I would have to wait for someone to come clean it before I could actually go.

My mom and I were thinking up ways that I could pretend to be sick enough to be ensured a normal room... All of them involved faking the symptoms they always ask if you have (fever, vomiting, diarrhea, cough, sore throat) but that always runs the risk of me seeming TOO sick and not getting my chemo, which would suck and push me back further!

Arielle came to visit, which was super fun - we ended up watching several hours of Wife Swap with my mom - what is it about chemo that makes you become addicted to really, really stupid TV???

I also had a funny experience with "room service" - I had read the menu, and seen that under soups they offered the following: Chicken Noodle, Vegetable, Chicken Broth, Beef Broth, and Vegetarian Chili. So, my mom called down to food services (the phone was too far away from my pole for me to use it without unplugging) and ordered me a bowl of chili. Since vegetarian chili was the only one listed on the soup choices, we didn't feel the need to specify. Unfortunately, when they brought my food, I got TWO bowls of Gold Star chili - no spaghetti or cheese or anything. Just bowls of chili. For those of you not from Cincinnati, Gold Star is a type of Cincinnati-Style chili, which is more like a sauce, and always (ALWAYS) served either on spaghetti or a hot dog (Coney style). This is not a kind of chili you want to eat plain (like regular chili). Needless to say, I ate a few spoonfuls and gave up, sticking with my wheat toast. Oh well... probably chili and nausea don't go too well together...

Me & Arielle stuffed into my tiny chair-bed

This week is UC's open house type thing where students can go and meet professors and such, so I'm excited to go meet some of the new professors I'll have. School starts a week from tomorrow! FINALLY!

Lots of Love,

Lauren

ps check out the previous post for content updates and NEW PHOTOS! wooo!

Lauren van Winkle

Hey Guys,

I am not a morning person, but somehow I managed to drag myself out of bed at 6am yesterday. Maybe it was the promise of delicious chemo that got me up & at 'em so easily. ...I'm going to have to say probably not, though.

We actually made it to Children's early yesterday - my appointment was at 7:30, and we were sauntering in around 7:20 - potentially a new record? (My mom and I tend to run late for things...) We made it up to the check-in desk at Day Hospital just behind a woman talking really loudly on her cell phone, with an adorable little boy curled up sleeping in a wheelchair. The woman (it's still unclear if it was his mom or not) just stood there complaining into the phone about how she had to take "The Kid" to the hospital and he was giving her so much trouble today, and he was such a handful... The nurse kind of looked over after she got off the phone and gave the woman a doubtful look, with "He always seems so sweet here, and he's sleeping now!"

I feel really bad for some of the little kids at Children's, especially the ones who are really sick and don't have a support system from their families. Most of the time, you see the little tiny kids in their rooms all hooked up but looking relatively happy because they're surrounded by family and toys and don't really know any different (which is sad enough on its own). It's even worse to see the kids who are all tiny and hooked up but being yelled at by their parents, because they're not even surrounded by the positive energy they need to heal more quickly. I guess that's why Children's has such a great system of social workers checking in all the time (heck, I even have a social worker come in and check on me - but maybe that's because the staff thinks we've lost our minds because we laugh SO much...)

Anyway, I got Kristy yesterday, who is my favorite nurse. She's about 3 years older than I am, and is by FAR the best nurse I've ever had. She never waits to be asked to do something and is always in as soon as my machine starts to beep - sometimes even before I have to press the alert button! Usually, the nurses wait until Dr. Adams comes in before they'll access my port, but Kristy always does it right away so that as soon as the chemo order is filled, all she has to do is hook up the tubes, instead of letting it sit there while she hooks ME up also. Because of all of her awesome prompt nurse-work, I was unhooked and on my way out of Day Hospital by 11:20 - I'm ABSOLUTELY sure that's a record for us.

I was feeling pretty crappy by the time I got home, and Brian was cool enough to run to McDonald's and get me a milkshake and fries (which sounded so good at the time, but now thinking about it is making my stomach turn!) I spent a few hours up in my bed, alternately sleeping and watching a couple hours of THS:Investigates Various Terrible Crimes Against Beautiful People (I believe it was a mish-mash of "Husbands Who Kill" and "Young, Beautiful, and Missing," because I managed to catch a bit of Elizabeth Smart at the end...)

Later on in the day, I was able to keep down some ramen (knock on wood, but I've managed to keep the vomit count down to 0... I'd like it to stay that way, although some days take more willpower than others...)

I spent basically the rest of the night sleeping on the couch or sleeping in my bed with Winnie (who normally hates cuddling, but makes the sacrifice when I'm feeling crappy) so I feel a little like Rip van Winkle - when I woke up this morning, I had absolutely NO concept of what time it was. And it's raining (which I love) but when I got in bed yesterday afternoon, it was really sunny out...

I'm feeling pretty good at the moment (all hopped up on Kytril to stave of the nausea) and even considering meeting a friend for tea before he goes to New Zealand for three weeks - this, however, could take a turn for the worst when I make the first attempt to get downstairs and/or eat anything. The digestive system on chemo is a delicate beast...

Thanks for all of the comments people have been leaving! I love to hear from you!

Lots of Love,

Lauren

Change is Good

Hey Guys,

I mentioned before that Sarah Sullivan came to visit me yesterday. Since she works for Children's, she's able to share a lot about what's going on "behind the scenes" - the parts of the hospital that the patients don't see, but that keep everything moving smoothly (well, as smoothly as a hospital can run!)

This morning, Sarah emailed my dad & I with a great article that had been published for Children's staff members. It's all about the changes the hospital is making to help things become more efficient, especially in the area of patient waiting times. My family has been in and out of Children's a lot over the past nine years or so (years of treatment and scans for Brian, and now myself...) and it's really great to be able to see all of the past changes occur, and even better to be able to see what the hospital wants to change in the future. I was so happy to read this article, because a lot of times you wonder if the people who run things even realize what the real problems are for the patients. I know for myself, the waiting time to start chemo is really frustrating - especially on my short treatment days. I've had to wait three hours for someone to write an order so I can get less than two hours of chemo! Now, I know that's still better than being an inpatient, but patients shouldn't have to wait longer than their treatment time to get the treatment started! It was really refreshing to see that Children's recognizes that wait times are something they need to fix, and have actually drawn up a plan to make that change happen! That's one of the many reasons I'm thrilled to have been taken on as a Children's patient!

Also, congrats to Children's for moving up from 5th place to become the 3rd best Children's hospital in the country! Woohoo!

In my world, I'm definitely reaching a point where the chemo's building up enough for the side effects to start getting a little worse... usually after this first treatment, I feel slightly crappy that evening, but fine by the time I wake up in the morning. However, it's 7:50pm and I'm still nauseous! Maybe I should start eating more bland foods... or some ginger ale! I've got some achy joints from the Vincristine, but nothing unmanageable - no trouble with stairs or anything, but I was a little stiff after the "Tour of Clifton" I gave my mom today. We drove around areas of Clifton she'd never really been to - especially the Gaslight District (so pretty!)

On a funny note, I'm definitely bald, but I'd say I've still got about 10% of my hair... and that 10% is growing... and growing... I'm going to have to ask my mom to buzz it off again, or it's going to start looking silly! My little chicken fuzz hairs that are left have gotten long enough now that they're starting to curl...

Finally, one of my friends posted this on Facebook, and I thought it was pretty funny/ridiculous, so I'm posting it here for all of you to enjoy. This guy watched every episode of Friends in one sitting - over 80 hours of TV! He broke the World Record for longest TV watching (or something like that...)

Lots of Love,

Lauren

ps the Leukemia and Lymphoma Society is holding a Light the Night walk at Sawyer Point in Downtown Cincinnati on Thursday, September 24. I'd love to be able to get a team of family and friends to walk, so anyone who's in the Cincinnati area (no matter how well we know each other), please feel free to send me a message or give me a call and let me know if you'd like to participate! Find more details HERE... Thank you guys all so much!

Another Day, Another Round of Chemo...

Hey Guys,

Well... I'm almost halfway done... today was, all in all, one of the best treatment days I've had (in no small part to my awesome visitors)

I can't remember if I've mentioned this before, but Children's offers free therapeutic massages to all their patients. I got my first one last week, and now I'm officially on the massage therapist's schedule, which means that every time I come in for a treatment, she's notified, and I get to have a massage! (woohoo!)

As you can see in the picture above, it's not like a regular massage - I lay in my hospital bed (fully clothed) and she works VERY gently so that nothing gets too sore. She asks what I want to have her focus on (usually my neck and shoulders - too much computer time!) and then she always gives me a little bit of a head and ear massage.

After the massage, my nurse came back in to access my port, and I made a terrible mistake. Usually I lay so that my back is to the nurse while she accesses me, but today she stood on the other side so that I was facing her. This was not a good plan. As I've mentioned before, I get numbing cream to put on my port before I get to the hospital so I won't feel it when they access me. Today was no different - except that it was the first time that I actually SAW the needle they use. It looks kind of like a plug - except instead of prongs for the electrical socket, there's a 3/4" long needle in it's place. 3/4" may not sound particularly big, but it is when it's a needle about to be stuck in your side! So, due to this unfortunate turn of events, I tensed up a lot before she put the needle in, and even though the skin was numb, it was the first time it's ever hurt to be accessed. I'm pretty sure that had something to do with me watching.

After this though, everything went really smoothly. I had some fantastic guests! William came around 11am, armed with the perfect selection of DVDs... among them were Angels in America, Arrested Development (one of my favorite TV shows), The Emperor's New Groove (thank you, Disney), and A Mighty Wind... we watched the second part of Angels in America (William commented a couple of nights ago when I told him to bring it "Are you sure you want to watch a miniseries about AIDS while you're getting chemo?" I responded with "Well... at least I don't have AIDS...") and later watched a little bit of A Mighty Wind... just to cheer the place up a little after an hour of depression.

Thanks, William, for being such a fantastic visitor and staying for almost my ENTIRE treatment - and being hilarious company the whole time! We managed to take a few pictures at one point - notice how much more tan he is than I am... (I guess that's what happens when he works at a pool and I work in a tiny office with no windows...)

Also, he was pretty tired all afternoon (apparently last night was a little crazy) and opted to "take a nap" while my mom was taking pictures... complete with a cuddly bear (courtesy of Sarah!)

Sarah Sullivan also came to visit - she works at Children's, and we met her a few years ago when she first started working there. I love seeing and talking to Sarah, especially now, because she's not much older than I am, and had Hodgkin's when she was my age. It's really wonderful to have someone who went through almost the exact same thing so close by to talk with! It's also especially encouraging because she's pregnant and due on October 11 - that really gives me hope that the treatments won't damage my fertility (which is something I was a little worried about before I talked to Sarah). She stopped by for about an hour, and brought me an adorable stuffed bear (which is awesome, since I hadn't been wanting to bring my "special friends" to the hospital for fear of leaving them behind - yes, I have "special friends" at the age of 22...) as well as a stress ball. I'm pretty sure that will come in handy - I get stressed a LOT and I've been having some pain in my right arm that relaxes when I squeeze a fist... the ball was helping me relax it a lot in my bed.

(me & Sarah... she looks a lot better than I do!)

I also have some good (I hope) news in regards to my tremors and tingling! I talked to the OTHER Sarah (my fellow) and she told me that people my age generally feel those side effects worse than others, and wrote me a prescription for something called Neurontin, which is a pill I take three times a day, everyday (boo to more pills) throughout my treatment. It's sort of like a painkiller, but won't make me groggy and I have to take it all the time for it to work. She says it usually works really well (and my mom's friend Sue agrees), so I'm hoping when I come up to Cleveland in a couple of weeks, I won't be so shaky and weird.

Finally, I wanted to thank Claire at A Little Piece of Me for sending me this fantastic sketch - we've been communicating through a blogger network, and exchanging stories - she offered to send me a sketch, and I told her about a joke I have with some of my friends about having the crappiest superpower ever... I think it's pretty funny!

Lots of Love,

Lauren

Before I Forget...

Hey Guys,

I wanted to post this quickly before I forget - I've been starting to get Chemo Brain and I've been forgetting things A LOT (even more than usual - I know that's hard to believe!)... for example, this morning I asked my mom twice within five minutes if she wanted to share some bacon at breakfast...

Anyway, I came across this when I was doing some reading on a Lymphoma information site (if you have any questions I haven't answered in my posts and for some reason you don't want to ask, definitely check out that site... it's got some of the most detailed info I've found on the web! But seriously - you should feel free to ask me ANYTHING)... I've definitely gotten off topic, and I wanted to share a really great e-card site with you all. These cards are hilarious! I love the humor - I saved some of the pictures to my iPhoto, and they totally give me a lift when I'm feeling bad. Check this one out - it's one of my favorites:

That's all for now, but you'll hear from me again soon! Also, a HUGE thanks to Dennis Pyritz from www.beingcancer.net for adding me to his blogroll as a resource for other Hodgkin's patients... I'm so happy to (hopefully) be able to help other people!

Lots of Love,

Lauren

Stars Without Their Makeup

Hey Guys,

So I've been getting a lot "Wow! You look FANTASTIC!" comments from people when I see them, especially if it's been awhile and they haven't seen me since before I was diagnosed. I think people mostly assume that I'm going to look all pale and sickly (well, I'm always pale...) but I've made a vow that no matter how bad I'm feeling, if I have to go out somewhere, I'm putting on makeup. There is absolutely no way I ever want strangers (or friends, for that matter) to ever think "Wow, that girl looks like she has cancer!" I even put on makeup to go to the hospital to get chemo! Thats really the same reason why I refuse to wear a bandana or a head scarf when I go out - I feel like wearing something like that makes me look more cancery - if I walk around bald, I feel like people are more inclined to think that I'm bald on purpose since I'm not trying to hide it.

Anyway, I'm offering you all a rare treat - a glimpse of me without all of the makeup I wear on a daily basis (much more now than ever before!)

With Makeup (smiling!)

Without Makeup (YIKES!)

You can't see them as well in this picture because of the giant flash, but in recent weeks I've developed some extremely attractive chemo circles under my eyes - I've started to look like the losing end of a fist fight.

I'd like to thank Sephora, Clinique, and Laura Mercier for their part in keeping me lookin' good (as well as significantly shrinking the size of my wallet)

In other news, I've had a couple of weird side effects sneak up on me the past couple of days. I'd been hearing ever since the beginning that dry skin would be a big problem. I'd been feeling pretty triumphant about the fact that I'd somehow escaped this, but starting yesterday, I've been feeling it. The skin on my arms and legs is peeling and tight - I kind of feel like one giant piece of dandruff or something. My mom got me some amazing moisturizing body wash and extra-thick lemon scented balm from Bigelow's, and I've been slathering it on, but it's effects are short-lived. Hopefully drinking massive amounts of water will help.

Also, I've been feeling the nerve effects of the Vincristine (which, annoyingly, are always delayed - I'd rather feel crappy all at one time). My calves are all tingly and burny feeling just under the skin - at first I thought it was from the dry skin, but it's definitely not on the surface, it feels like the nerves are all over-firing. I took one of my oxycondone pills (which are meant specifically for neurological pain), but all it did was make me groggy enough to run into my bedroom wall when I got up to go to the bathroom. Hopefully they'll be less tingly while I'm driving to Cleveland tomorrow, because pain meds + 4 hour drive = disaster.

Finally, enjoy this picture of Winnie I found when I was cleaning out the memory card on my camera. She looks like a little lion.

Lots of Love,

Lauren

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,

Lauren

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

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,

Lauren

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,

Lauren

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!

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)

Finally,

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,

Lauren

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)

ANYWAY...

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,

Lauren