Chimmies

Argentina has come to Fitchburg, WI. Recently, an argentine sandwich shop named Chimmies opened near my house. The menu isn’t extensive, but my parents were both quite pleased with their sandwiches; I stuck with the humita empanada (corn). The filling was quite different from the humita empanadas from good old Lo de Fercha, but it was still very tasty. They seemed to be fried, but were not the least bit greasy, and were nice and crunchy. Overall, definitely a place to visit again!

Empanadas (humita and beef)!

Empanadas (humita and beef)!

– Maddy

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MVM: Say Something

This song really has nothing to do with anything in particular, but it’s been stuck in my head for days and I also kind of love it. And I may have grown up during her Genie in a Bottle years, but this song always reminds me how truly talented Christina Aguilera is. That’s right, I’m Team Xtina, baby!

– Maddy

Update: So it turns out that my whole creeper eye thing (actually called 6th nerve palsy) will likely need surgical correction. Awesome. I can only hope that I’m able to get in with the strabismus team (surgery team) with enough time to schedule surgery and heal before Pitt in August – fingers crossed!
I also learned that I may never be able to wean off steroids… I have a 3 month plan to titrate (periodically lower) my dosage, but that may not work. Oh well, what’s 1 pill that I still have to take? I’m getting rid of many, so I could deal with 1 sticking around.

Inspired

Disclaimer: This post is slightly lengthy and only moderately content-filled until the end. If you’re short on time, I’d suggest reading the latter part.

It’s amazing how many blog posts I write; in my head, at 5:00 am, that is. Clearly, most of them never see the light of day. This one did. So, I realized that I wrote about my whole cancer saga, but it was a completely picture-less post. And honestly, what’s a post without pictures? Well, what kind of picture could I have included? Why, a before and after shot! And please note, this should be considered a great honor as the after picture is one of very few (eg. can count on one hand) pictures I’ve allowed to be taken of me since the pre-cancer days.

Before

Before


After

After

Obviously some things have changed, but it’s still me. I’ll definitely try to keep the weight off, but my hair could start coming back a little faster… any day now, any day. The creeper, lazy eye-like situation that I have going on is almost certainly temporary; but while it’s still around I get to enjoy double vision and scaring small children; okay, the second part of that I actually do sometimes enjoy. Also, note the necklace in the after picture – I wear it almost anywhere I go as it’s made with my sister’s ashes. This may seem creepy to some – and rightfully so – but it really does help me feel closer to her. To each his own, I suppose.

In the after picture I’m clearly smiling, but that’s mostly just because that’s what people tend to do; and because I wanted to show that I still have all my teeth. Yeah, apparently you can lose those from cancer too. I got a small chip from the breathing tube in my first surgery, but that I can handle.

Anyway, another reason I’m smiling is because I couldn’t think of an expression that properly conveyed sheer and utter boredom. I know that almost the entire country is dealing with lots of below-average temperatures, but let me remind you that I’m in WI. When I went to bed last night the “real feel” was -18, which is pretty representative of how it’s been. The issue is, since it’s so cold, I am even less motivated than normal to leave the house; but then there’s not much to do in the house. Enter: hibernation. Why leave the house or even go downstairs when I have a comfy queen bed with flannel sheets, fleece blankets, and a down comforter with flannel cover? I can’t think of many reasons. But then I get bored. Obviously. I am, after all, writing a post that talks about the weather, for goodness sake.

Besides the cold, I also get bored because there’s not much that I can do at the moment. I went shopping the other day, and just a few hours of standing and walking had me just about falling asleep at the dinner table. Good thing I’ve mastered the art of online shopping! I had tried rock climbing maybe 2 months ago, but found I was so much weaker than when I was rock climbing before that I just got discouraged. I did make it to the top of a wall, at least.

Like I said, the top of a wall...

Like I said, the top of a wall…

What I can do, and have been doing, to pass time is read or watch TV and movies. Consequently, though I may be back, future posts from me will probably be few and far between, since I think the only thing I could write might be a movie review or the like, and there are already plenty of those sites.

Now, there was actually something slightly more interesting (I hope) that inspired me to write this post. I was watching a TV show (shocker), and the people were at a coffee shop for a spoken word open mic night. I’m not sure if all of you are familiar with this type of thing, but my high school used to have some amazing slam poets (spoken word can also be called slam poetry) that we’d occasionally see perform during fine arts week, or the like. It’s definitely something to look up because, if done well, it’s “amazeballs” (to quote one of the judges on The Voice). So before my 5:00 am mental blogging began, I was having a 4:30 am mental poetry slam. Now try not to judge too harshly (or harshly at all, really), as I’m not even good at normal poetry, but I thought I’d share something I came up with. Just try reading it with a little rhythm for the slam poetry effect.

C-A-N-C-E-R. Cancer.
That six letter word we’re all familiar with. Right?
Maybe not.
Breast cancer, lung cancer, okay.
But have you heard of Medulloblastoma?
I’m one of the lucky ones, they say.
It’s a treatable cancer – I’ll survive.
But will I?
I lose my hair.
I lose some weight.
With over 20 pills a day,
I’m just glad insurance has to pay.
At first, I’m fine.
But it’s a thin line.
The longer it goes,
the harder it gets.
I start to think:
Can I do this? Really?
And the answer is
That it doesn’t matter if I can
I have to do this.
We lost my sister
To a disease that’s arguably worse than cancer;
It just doesn’t get the same attention.
But she’s gone, and I’m here,
So I have to fight, push past the fear.
But I’ll tell you dear,
I make no promises.
Finally, the light is here –
The end is near.
I survived.
And so can you.

Let me just say that all 3 versions I came up with during my mental open mic night were better, but they were gone long before I even found a pen. Anyway, it’s a start; not that I’d ever actually get up and perform somewhere, but maybe this is the beginning of a budding poetry hobby. Maybe.
Still, just remembering some of the slam poets from my high school gives me goose bumps because they were so good and so powerful. In case you don’t feel like searching YouTube yourself, I’ve posted a sample below so you can see how it’s really done. Watch it. Now. Do it. The video is a guy performing at my old high school, but the ones I remember were even better. I was disappointed with the videos I could find online, so if you really want to experience some spoken word, keep a lookout for any poetry slams in your area – whether you agree with the performers’ messages or not, you won’t regret going – promise!

Note: This was only working on my phone (and not my computer) for some reason, so if you have issues too, it’s a YouTube video called “gustavo manuel meneses spoken word fine arts week”

– Maddy

She’s Alive!

I am officially done with all my cancer treatments – in other words, I’m a survivor – cue Destiny’s Child song. Hopefully now that I’m done with treatment, I’ll be doing some more blog-worthy things, or doing anything at all, really… Still, I make no promises; I may have finished treatment, but I still get to enjoy more tests and therapy and periodic scans, and, of course, tapering off all my medications (likely accompanied by puking – oh joy). Anyways, as a general recap, I figured I would do a sort of calendar/hero bead summary to document the last year and a half or so.

Now, hero beads are something the hospital does so that kids can have some way to record everything they go through for treatment… got an x-ray? That’s one bone-shaped bead for you. Another x-ray? Another bone-shaped bead. So, I’ll start with my overall illness calendar.

August 7th, 2012 – Diagnosed with a brain tumor and admitted to Meriter Hospital

August 10th, 2012 – Surgery 1 to remove the tumor; lasts 18 hours; out for 4 days

August 23rd, 2012 – Surgery 2 to implant a VP shunt (to help drain CSF and control pressure)

September 4th, 2012 – Moved to room on 3North: in-patient therapy

September 9th, 2012 – Grandma dies

Results on tumor back – Diagnosed with medulloblastoma

September 20th, 2012 – Moved to UW Children’s Hospital to start radiation and chemo

September 21st, 2012 – Surgery 3 to implant an infusaport; notified of sister’s death

November, 2012 – Surgery to implant gastric tube

September–November 2012 – 6 weeks of 5x/week radiation (2 weeks of head, neck, and spine; 3 weeks of head and neck); weekly chemotherapy

November 2012 – November 2013 – Periodic chemotherapy, based off a generally accepted ‘roadmap’ of drugs and timing

Chemotherapy drugs included Cisplatin, Vincristine,  and Cyclophosphamide

Periodic MRIs, nuclear medicine scans (to test kidney function), and audiograms

Late October 2013 – Kidney stones

November – December 2013 – Shingles on left eye and head

            Vision permanently affected by shingles – hello glasses

Hero beads:

Red metallic ball – blood draw – 120+

Orange-yellow-red striped sphere – biopsy complete – 1

Gold balloons – birthday on treatment – 1

Maroon striped circle – blood culture – 5

Red heart – blood transfusion – 20+

Courage charm – central line surgically in – 1

Green wooden – course of chemo – 19

Cat – CT scan – 2

Decorated wood – day treatment – 18

Gold cancer ribbon – diagnosis – 1

Purple wooden ball – echocardiogram – 1

Girl dangle charm – end of treatment – 1

Smiling wood disc with bandana – hair loss – 1

Teddy bear- inpatient admission – 9  

Orange-striped triangle – IV infusion – 5

Sun – MRI – 8

Gold ball – nuclear med scan – 6

Green butterfly – new oral med – 22

Blue with flower – OT/PT – 14

Green with white stripes – platelet transfusion – 20+

Circle with blue anchor – port access/IV placement – 36

Porcelain circle with sun – radiation – 30

Ceramic moon – sedation – 9

Blue Star – surgery – 2

Striped cube – tube insertion –1

Blue and white spotted glass cylinder – ultrasound – 4

Bone shaped – X-ray – 4

I’m sure these hero bead numbers aren’t entirely accurate, and they don’t include anything that happened at Meriter, but I think it certainly provides a sufficient picture… Clearly, my life was just full of excitement. And yet, it seems easy now that I’m faced with weaning off steroids, re-learning how to walk, and going back to school to take 18 credits – yikes! At least I have one more year of school to get through before I have to become a real adult. Abi and Alexa make it seem okay, but they’re too cool to really be trusted…

– Maddy

P.S. Shingles is really terrible, so I’m going to encourage everyone that had chicken pox to get vaccinated!

MVM : Tejano Sound Band – “Cierra Los Ojos”

Since Abi and Alexa have their hands full posting about their trip, I figured I would try to pick up MVM. As I am a highly unreliable blogger, it’s music video martes, instead of music video Monday, but a lot of thought went into this choice, as I’ll explain.

Since I have nothing better to do, I started looking up some information on the Texas music scene, San Antonio in particular since that’s where our little Alexa is. According to Wikipedia (the most reliable source there is, clearly), San Antonio is mostly known for tejano music and heavy metal. I figured that the last two hard rock MVMs were surprising enough, so I started investigating tejano music.

Most of the music that I encountered was what I might call Mexican folk – almost polka-like with all the accordion. I wasn’t a huge fan, but I did stumble upon this song, which I like better, but admittedly still don’t love.

Anyway, looks like Alexa might have to either figure out her heavy metal headbanging or her accordion dancing. Sounds exciting!

– Maddy

MVM: Wayland – Sobrevivir

So after seeing Wayland live (yeah!), I can verify that they are definitely not the same Wayland as the Spanish album I found…. Oh well, I like them both 🙂 I did find a video of one of the Spanish songs, so here it is – now you can enjoy hard rock in English or Spanish, or both!

– Maddy

MVM: Wayland

I had promised myself that I was going to blog more since Alexa and Abi are busy seeing the sites in Europe and I’m doing pretty much nothing, but let’s face it: I’ve never been a very reliable blogger.
Anyway, you may or may not know that my hometown, Madison, WI holds a Brat Fest every year over Memorial Day weekend; this fest almost always sets the world record for brats sold (beating their record from the previous year). They also offer veggie brats, so I can join in on all the excitement too! I was looking at the schedule for this year’s fest, and realized that a band I recently discovered and quite like is going to be performing! I figured I should look at a little more of their music before seeing them live, and in doing so I found out that a lot of their songs are in Spanish (unless there is a Spanish band with the same name, which is probable – this Wayland is from MI, so it seems unlikely that they have an almost entirely Spanish album)! Even if they are different, I like both. I figured I’d share one of their Spanish songs with all of you, but couldn’t find a video for one, so here’s one of their songs in English (as I’ve mentioned, they are probably two separate bands, I couldn’t find out online, but I’ll still share an English song):

Note: I found the Spanish songs on Spotify (an awesome app that everyone should have), so if you’d like to hear one (and you should), you can download Spotify 🙂

-Maddy

Update: I found one site that makes me believe they may actually be the same band after all, but I’m still not sure about anything… hopefully I’ll figure it out when I see them live!

Summer in “the zoo” Part II

I covered most of the exciting Kalamazoo happenings in the first post, but there was one outing with way too many cute pictures to fit in with everything else – a trip to the actual zoo! On the day we went it was over 100 degrees and sunny, so many animals were just laying under a tree panting, but I still managed some cute pics.

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Yeah, that’s how I felt about the temperature too.

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Those giraffe tongues are long and slimy!

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Eaton must like gophers

Apparently, Eaton supports the zoo – that’s a plus in my book. Now I figured I would tell you a little bit about what I did, hopefully stopping before I bore you to death. Technically, I was a supply chain intern in the purchasing section of Eaton’s vehicle group. What I actually did was learn a whole lot about a program called SharePoint and struggled to figure out how I was going to change the fundamentals about how people store and search for shared files – I’m now a near SharePoint expert and my boss did teach me quite a bit about both purchasing and economics, but I’ll admit that the internship wasn’t exactly what I was expecting.

– Maddy