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 :-)

Paper Gown Book Club #1

Hey Guys,

I've decided to add a new aspect to my blogging - book club time! I got the idea after reading Kairol Rosenthal's blog Everything Changes and deciding that I really, really wanted to read her book. Unfortunately, I haven't had a chance to run out and get it yet (I'll be heading out to Barnes & Noble in Kenwood tonight!) so I'm going to write about an interesting book my mom passed on to me. Now, for those of you who don't know, my mom has had cancer (more on that in another post...) so she's a fantastic resource for any advice or questions I might have.

As I've written about before, I've had a lot of issues with my diet since starting chemo. I've got tons of dietary restrictions, and those mixed with the nausea and mouth sores makes a skinny girl even skinnier! I know that might sound appealing, but trust me... skin and bones is NOT an attractive look. Anyway, the with all of the diet problems, my mom dug out this book for me: The Cancer Recovery Eating Plan, by Daniel Nixon, MD. Dr. Nixon is a Folk Professor of Experimental Oncology at the Medical University of South Carolina, as well as a consultant with the American Cancer Society.

Now, I was a little skeptical at first - the book looked pretty dry, and it's also fifteen years old (published in 1994). I was also extremely skeptical about the part about "Folk Professor of Experimental Oncology." Usually I shy away from anything that tells me to use alternative-type medicine to cure my cancer. But then again, that advice usually comes from aging hippies in vintage shops, not popular books written by accredited medical professionals.

As I started the book, my skepticism lessened - especially when I came across this one particular quote: "Your goal is to eat adequately without feeding the cancer." That really struck me. Dr. Nixon makes the very important point that so many cancer patients are so absorbed with just trying to keep on weight they don't stop to think about what they're actually putting in their bodies. This hit close to home for me, because I've been struggling with the same thing. Before I was diagnosed, I was used to eating mostly organic, local foods from farmer's markets. After my first chemo, I was so nauseous that the only thing I wanted to eat was Kraft Macaroni (SpongeBob or Pokemon shaped, please!), which, I'm sure only made me feel worse.

Dr. Nixon dedicates chapters to specific types of cancers (such as breast, colon, and others), with dietary suggestions for each type. Unfortunately, he also lists Hodgkin's (along with NHL and Leukemia) as non-diet related cancers, which kind of made the book moot for me, but oh, well - I still learned something! And at the back, he wonderfully puts recipes high in "good fats" but low in "bad fats" - perfect for someone like me, who is trying to put on healthy weight - not just any old kind of fat. In addition, there's a "Get Healthy" menu at the back - helpful for jump starting a new healthy eating lifestyle.

All in all, I enjoyed the book. It was a little dry - I don't always have a lot of patience for mainstream books with too much medical jargon, but this one wasn't as bad as it could have been. I learned a pretty decent amount about how cancer is effected by diet (even though MY cancer, apparently, doesn't have anything to do with diet) and that was good to learn for the future.

Let me know what you guys think! Also - Book Club. Good idea? Bad idea? I feel like I need a little something else to do to fill my time before I (hopefully!) start classes at the end of September.

Next, I'll definitely be reading Kairol's book Everything Changes - click on the link at the beginning if you want to grab a copy and read with me! I'd love to get some discussions going.

I'm also open to suggestions! I'm going to try to lean towards books for YAs with cancer, but I might throw something else in the mix every once in awhile, just for a little surprise :-)

Talk to you soon!

Lots of Love,

Lauren

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

who knew?

Hey Guys,

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

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

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

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

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

Lots of Love,

Lauren