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Thanksgiving!

Well, I don’t have all too much to say right now, but my mother reminded me of a little something that I can’t believe I didn’t remember on my own. I’d say it’s telling that I didn’t remember it, after all.

She told me it was one year ago today that I was officially diagnosed with unclassified Sarcoma. It was one year ago today that I went in for surgery to remove that a-hole. I can’t believe it’s already been a year! I’m sure I’ve said this before, but I couldn’t wait for the day that it would be a mere memory. And now tomorrow, I’ll have so much to be thankful for: health, friends, seasonal vegetables, cityscapes, my slow adjustment to a frigid breeze, and free On Demand pilates/bootylicious workout classes. It doesn’t really get much better than that, right? Right? Bootylicious?

While I’m not heading home to California for the traditional Thanksgiving dinner, I did get  my ya-ya’s out on Sunday, when my roommate and I cooked a feast for 15 of our amazing DC friends (picture of the spread below). It was perfect and perfectly necessary. At the dinner table and on a daily basis, I am surrounded by people who literally astonish me as they commit themselves, in their own way, to the cause of health and happiness for the many. It’s inspiring – to say the least of my friends here.

Enough of the sentimentality and onto more food. Noticing a theme? Mom, don’t you worry about me as far a Thanksgiving dinner is concerned, because I’ll be feasting on lobster and nothing less! On that note, I hope everyone has a wonderful dinner tomorrow and is surrounded by loved ones. If not, please call me and I’ll bake you a pie or two, no questions asked.

Much love and happy holidays,

Jaclyn

“Shit happens, and it’s awful, but it’s also okay. We deal with it because we have to.”

-Why, Vonnegut, of course.

It’s been around 2 months since I last wrote. The neglect is unjustified and not having internet is no excuse. You know when you have a great friend who you need to call back, but it’s been so long since you haven’t returned their call that it’s become somewhat of an uncomfortable situation? That’s how it is with this blog right now, so I will do my best to briefly fill you in. I’ve wanted to for 2 months, after all. An exceptionally mundane event occurred yesterday afternoon that sums up where I am at this point in my life: I was ambushed by falling acorns with trajectories akin to the Original Bouncy Ball and somehow lived to tell about it! I’m on the East Coast now! And I was walking to my local café! I didn’t need a car to get a coffee, for the love of mother-nature! Too many exclamations? Too bad!

Since last I wrote, I had the chance to revisit one of my favorite cities on Earth, Barcelona. Good food, cheap wine, old friends, new friends: check. I then took a quick trip to New York to see my family (one L.C. Armstrong, painter of the image at the top of my blog). And then off to DC to begin my job search—something that I’ve waited nearly a year to do. I was offered an Associate position (read: internship), while I continue looking, and I moved out here as of a little over a week ago. Things are excellent, as you may ascertain given that my biggest concern right now (aside from finding meaningful work) is dodging those dangerous little acorns on my corner.

It’s strange to think at almost one year to the date of my Sarcoma diagnosis, the cancer, surgery, radiation, and chemotherapy are but a memory. My hair-or lack thereof-reminds me daily. Yet, I also get compliments on a daily basis with regards to my boldness (“Wow! I want to shave my head so badly too! You look so edgy!”) to which I wouldn’t dare correct. My scars don’t do much to dispel the assumption, but that’s a great thing, because I never wanted to carry a cancer diagnosis around with me like some ugly little piece of baggage anyways.

Moving swiftly on…My new house is gorgeous, my roommates are fantastic, and there are friends from the campaign scattered everywhere. All in all, a pretty perfect set up and I couldn’t be more thankful or excited. I have to say that I do miss my family and friends—I think about you all the time. The disasters of the last year brought us all closer, so it couldn’t have worked out better, right? Thank you for continually sending your love. On a lighter note: Mom, please sell my car. I don’t want to see that gas guzzler ever again!

Well, thank you for listening – I’m really glad I finally got the chance to send an update. But as for now, I’ve not much more to say. The picture pretty much explains it all! I hope to write some much more interesting updates in the near future!!

Love,

JaclynJust got to DC! 038

To-do. To-do. To-do.

I can’t stop “to-doing.” In fact, this unrelenting compulsion “to do” more was the subject of my personal statement for grad school, which led, ironically, to me doing something else. I was accepted to only 1 school, granted it was my dream school: NYU. But the timing was off and it was time to do something bigger and better (the Obama campaign), and when I go back to school, maybe I will be able to go somewhere bigger and better (no offense to NYU, of course). Point is, there is just no end to the madness – I’m only 23, but I’m not sure if there is a point at which I’ll ever be content or satiated.

Even through these last 6 months or so of treatments the “to-do” lists don’t cease to exist. I will dig to the deepest recesses of my brain to make a new and daily check list filling my pretty yellow legal pads from top to bottom. I want to be honest. It’s an obsession. What will I do today? What will I do next? Where will I go? Am I making the right decision? Should I go back to school now? Should I travel and only contemplate coming back? Will I be happy? Will I regret? And then, as I put my cup of Jasmine Green down and look up at the waving palm trees, the hibiscus and plumerias, the rippling water and the Buddha statue staring me in the face, a thought hits me: “RE-FUCKING-LAX, JACLYN!” If there is anything you should have learned from this process, it should have been to slow down and focus on the present, to forget about what I could be doing if I wasn’t fighting cancer, to forget about trying to measure my worth in what I could have maybe accomplished by the ripe, old age of 24.

Well, I’m working on chilling out. I swear it! Or maybe relaxing just isn’t for me. Some of you may think this train of thought sounds a tad melodramatic considering my initially optimistic diagnosis, but let me explain.

I haven’t spoken much, if at all, about the presidential campaign I worked on after graduating college until the election on November 4th, 2008. I was diagnosed exactly one week after that triumph, while still in New Mexico, the state I last worked in. Prior to New Mexico, I worked in California, Texas, and Illinois (at the national campaign HQ). I learned more than I ever could have expected, more about myself and more about the importance of a properly functioning team or network or lattice-structure of support, whatever you want to call it. So, after receiving training at one of the first of so many Camp Obama’s and after helping, in my own way, to put on several more of these during the campaign, I’m pretty sure I learned that one of the most basic building blocks for a structure with a common purpose and a reason for forward movement is “the story of self.” That is, to tell your neighbor, friend, family member, or the person whose door you just knocked on what personal position or change in circumstance led you to support the candidate. In the end, the listener should understand that your reasons are not uncommon. Because chances are that they aren’t. It’s a tried and true strategy – and it worked.

Well, now let me back up here. I mentioned earlier that I helped at these Camp Obama trainings “in my own way.” What I meant was that I did what was asked of me (document production, set up, take down, coffee runs, etc.), as long as I didn’t have to give any presentations to the crowd, big or small. The reason being twofold: 1) I get stage fright that I’m sure beta-blockers coulnd’t cure, and 2) I didn’t want to take the chance of having to tell my story of self, given that after several months on the campaign, no amount of mental digging could help me produce one. I was convinced that supporting Barack Obama was a gut feeling and the need for change – the choice was simple.

Anyways, this silly and overly emphatic fear of telling my story was only magnified when the trainer would say, “It’s always you folks who think you don’t have a story..You’re the ones with the best stories.” It’s true, too. I remember one woman in Chicago claimed she had no story, then brought nearly the whole room to tears nearly 15 minutes later. And there’s me sitting on the sidelines thinking, What the hell?? I seriously don’t have one, damnit!

When I knocked on doors, I would get serious anxiety as the doorbell rang and I awaited who I hoped would be a potential supporter. Okay, voter. Please don’t argue with me or ask why I personally support Barack Obama. I was sure I would forget the talking points and only think to say, “Ummm..Because I have a fully functioning brain and heart that occasionally work in tandem? Is that an okay answer for you? I hope so…goodbye.” You get the picture.

Fast-forward to late 2008 and the campaign is almost over. I’m in New Mexico. I won’t over-dramatize this because shit happened and there wasn’t much time to deal with or think about it, unless it had to do with winning. I’m also desperately trying to get to the point of this never-ending blogpost. Well, more or less in this order, here it is…I recieved a call from a family member, “Your dad is in trouble and he’s losing his job.” I got an anonymous email from a concerned citizen that said among other things, “Just letting you know that your dad is losing his house.” Oh, by the way, the grandfather you never met just died of cancer. And guess what? You’ve got it too.

I’m not saying all this to gain pity. I’m not tearing up while writing this. I’m simply thinking about what I’ve been thinking about since very shortly after the campaign ended: SO WHOSE GOT A STORY NOW, HUH?! We all have one. In retrospect, I’m realizing that while I began working working on the campaign based on that “gut” feeling, while I thought I was fighting for those less fortunate than myself, for ordinary men and women, it turned out that I was actually fighting for myself and for my family. It turns out that, in many ways, I am just like everyone else, an ordinary person with not so uncommon problems. Suddenly, I was overwhelmed with less remote concerns about the economy, unemployment, the housing crisis, and more importantly, my health and health care.

I’m currently getting to the other side of some of my own hurdles and working on others, but all in all, that’s my story. It’s been over a year in the making, with 23 years of building and being born into that lattice-structure of support to help me deal with all the bullshit and all the good shit. You know what? My point, if there is to be one, is that I guarantee you’ve got that structre there too, so use it. Simple as that.

And lastly, after 3 misdiagnoses, I was lucky to have caught my cancer before it spread, as the data on survival rates for sarcoma is tenuous, at best. It’s just too rare for great data. I was also lucky enough to have the best doctors at UCLA. But as of August 17th, 2009, I’m done and I’ve won!! As far as I’m concerned, I’ve beat you, you piece-of-shit stupid cancer. I can only help that I have helped others learn something about this thing in the process.

TO DO: CELEBRATE!! August 22nd, be there.

Hello!

I believe the last time I wrote was at the beginning of my 3rd round of chemo. Far too long ago! My apologies.

Last week, I went in for my post-chemo check up with the confidence that my blood counts would be at an acceptable level – I was feeling great. Nope. My doctor told me I had to go get another platelet transfusion, as my count was at a risky 1o, to which I immediately thought, “Mmmm. Stan’s Doughnuts is in Westwood…” Oink oink. So I did my thing, got my transfusion, and then got rear ended on my way home. No big deal, I told her, I just got more platelets!

In other news, it turns out that while I am doing very well with the chemo, my bone marrow is just not enjoying it so much. My doctor believes that doing the full regimen of Ifosfomide and Doxorubicin will not be worth the risk for the fourth (and last!) treatment. Instead, I’ll just do the doxorubicin, a 3-day out patient treatment. I want to be super excited about this, given that my biggest issue with chemo has been the anxiety I get in the hospital (keep knocking on wood), but it would have been nice to round off this oh so joyous chemo experience in the most aggressive way possible.  Go out with a bang, you know? Anyhow, I couldn’t be more elated not to have to go back into the hospital where I pretty much turn into a zombie and disappear from my room for hours at a time. Okay, so that only happened once. I was just making friends!

On a very exciting note, my eyebrows and eyelashes are coming back in full force! I missed them dearly. Now, the hair on my head, not so much. I’m not too sure when that will be coming back, but you better believe that I will Summer 073let you know as soon as it does.

Well, it’s August now. I’ll be done with chemotherapy by mid-month, a fact I just came to terms with this very moment. Holy shit.  Then it’s my birthday! I suppose the next 5 birthdays will be special markers in my survivorship – after 5 years, the risk of recurrence drops off significantly. So what’s next? I’m thinking a short vacation and most likely a move to DC, where I’ll try to get the ball rolling uphill again. I’d say that getting through this bullshit is a step in the right direction, at the very least.

Hey everyone!

As you can see, I am finally back into the hospital for Round 3. First day is down and I am half way into my second. Guess what? I only have to be in here for 4 days, instead of 5 this time! You might be thinking, “Well, six of one…” but I’ll tell you that the 1 day difference will be glorious! I can taste the freedom already. So melodramatic. Anyhow, despite my excitement, I was put in a room with an unnecessarily large digital clock – its bright red numbers slowly and silently ticking away all up in my grill.  I suppose it will help me remember that it ain’t over ’til its over.

And when will that be? Next month! My doctor just let me know that I will only be doing 4 treatments, rather than 5. As you’ve probably noticed from my prior posts, my blood count is not forming any sort of close friendship with my chemo drugs. My white count is currently pretty low, so the doctors and nurses are checking in on me quite assiduously. I just hope I can make it through to the last treatment on both the Ifex and Doxorubicin, rather than lowering the dosage again. We’ll see!

Something happy: Actually utilizing my outdoor patio privileges. It’s finally sunny in that little outdoor corridor and I’ll be spending the majority of my time there because of it. You will probably find me out there either sipping tea (Yogi’s Super-Antioxidant Green) over a book (Love in the Time of Cholera, Marquez) or, more likely, doing some sort of strange workout session that I made up nice and special for the hospital.

Something sad: Where is my Nurse Pattie? I hear she is gone on vacation? I adore her. Anyone who greets me with, “Hello, my favorite patient!” immediately gets my respect and adoration. No doubt. I hope she doesn’t say that to just anyone. Or maybe I do, since it does brighten up my day to hear it.  Either way, I guess ignorance is bliss on this one.

Sorry for the oh so short post. I just wanted to let you know that I am back in the hospital for now and I’m doing just fine. I’ll also post some more pictures very soon. As always, thank you for sending your love!

That flourescent orange is the Doxorubicin.

That flourescent orange is the Doxorubicin.

Hello all!

So, let’s see what has happened since my last post. Not too much, except a blood transfusion, a platelet transfusion, and some Vasovagal Syncope action (fainting) – not necessarily in that order. Over the past two weeks, things could have been much worse (remember my trip to the ER?), so I would categorize this as smooth sailing.

One question has been has been eating away at me since I fainted the day after getting out of the hospital: Just who in the hell (hell being mass media) decided that fainting should be made to look all wispy and glamorous? You know what I’m talking about? Floating to the floor like a feather, back of hand delicately pressed on forehead, just enough time to say “Someone catch me, I’m think I’m going to faint” it was not. Not having exprienced fainting before, I also thought you just kind of passed out. Oh no.

The day after my last chemo treatment, I went in for my Neulasta shot (boosts white blood count) feeling slightly under the weather, exhausted from lack of sleep, and stomach-achey. Right when the nurse stuck me with that needle I went at once hot and cold, I felt like I was going to toss my cookies (old school), and everything went black except for the contours on the faces around me, which were like multi-colored sparkles. Essentially, I was tripping out. And all I could think was, “Why am I not passing out so that all of this crazy shit goes away!?” As usual, whenever I experience something new and incredibly uncomfortable, I’m certain that I’m doomed to have it last forever – this instance was no different. Oh wait, that’s not all that I could think about. I now recall asking myself, “What the hell is that smell assaulting my nose over and over again, why won’t it stop?” It wasn’t until I could see that I realized there were about 6 people around me trying to keep me awake and that the toxic smell had a purpose. My point if there is to be one is that all of this, along with my apparent convulsing, BPM at 40, laying on the floor of the nurse’s closet with my legs up and 6 nurses/doctors standing over me..well, all of that made me feel something slightly less than glamorous. Damn you, movie makers for your false portrayals!

A week later…

Feeling 100% restored, I’ve been aching to get out of town. Unfortunately, it was at the height of my relentless complaints about being stuck in California and needing to get away for a bit (and being perfectly healthy to do so) that my doctor informed me of my low platelet count. By low, I mean 9, when the norm is 150-450 per microlitre of blood. He really shot through my plans and i was not pleased. The blood transfusion happened while in treatment the week before, but out of less dire circumstances. Because platelets help make blood clot, a significantly low platelet count – below 10 – can lead to spontaneous internal bleeding, heavy bleeding or easy bruising. Not so safe, but I seriously wanted to get out of Los Angeles. Anyhow, I took my ass over to the hospital to get the transfusion, which is nothing more than an IV bag of pale orange substance containing platelets, though I’m of the opinion that a “tranfusion” sounds infinitely more grotesque. I was given the transfusion in Westwood, so I finally got my Stan’s donut-holes (yummmy!), as my aunt and mother looked at me with discrete “I told you so” faces. Indeed, I would need to find more local ways of keeping myself in motion and sufficently occupied.

Take it to the garden, I did! I profess myself to be and am regularly called out by my friends to be a pretentious foodie, so I thought it appropriate to put my money where my mouth is. I planted a a little pot garden of tomatoes, cukes, lettuce, bell peppers, jalapenos, and herbs to get started. Just what I need for my Greek salads, the best of all salads – sorry Caesar and thank you, you lovely olive-skinned Mediterranean beauties. Someday, I’ll work my way up to a full-scale veggie garden, as I think back again to the end of Candide, “We must cultivate our garden.”

After my little fainting episode, they stuck me in a wheelchair (one that I insisted I didn’t need, they ignored). A woman came up to me to tell me that she thought I was workin’ the scarf look. I told her I thought she was workin’ the wig look. With an enormous smile, she let me know that she was battling breast cancer. Why the smile? She couldn’t have been more excited to undergo a procedure that would use fat from her stomach to reshape her breasts: cancer gone, flat tummy, larger breasts! Her friends would be so jealous, she said. I loved that. Anyways, I was looking rather pale, I’m sure, so she handed me a plum from her pack. Some people are so prepared. It was the best, most fantastically juicy plum ever. It instantly revived me, as I thought back to something my aunt L.C. told me in New York that has stuck with me since. She was taking a bite into an equally delicious orange, looked at me and said:

“This orange does not know there’s a recession. And it’s all the better, because there is.”

Simple pleasures, right?

Hi everyone! I really don’t have much to say, accept that I am getting out of the hospital tonight, which will bring my second round of chemo to a close. Yay! I am just trying to figure out what to do with the last 10 hours of my stay in this glorious resort. I tried to kill most of the day by sleeping in, but that didn’t work.  I tried to get them to speed up the chemo, that didn’t work. They said I could go crazy, or something to that effect (potential neurological side effects cause by Ifosfamide).

Overall, I am happy to say that I am doing well and that this round of treatment went even better than the first. I hope my luck continues, considering the binder full of potential side effects from these drugs. I thought I would be sitting here each week letting you know what new “joy” the chemo brought me, but I was wrong about that (for now, at least). Good thing!

I just wanted to state that my current level of excitement is unquantifiable.  Wooohooooo!!! I’ll send another update soon!

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