Friday, February 26, 2010

Random Thyca Tip #1


After radiation when my taste buds went psycho, and I was convinced I would never taste food again... I could still taste bacon. I survived off of BLT's

Monday, February 22, 2010

Locks of Love

Ok, so talk about my inability to follow through on something.

That picture you are looking at up there, that's my hair. My long, gorgeous straight hair. In case you didn't already know, I have an overwhelming love hate relationship w/ my hair. Naturally, it is a fluffy curly mass. Its super thick, and super annoying. When it looks good, its my best feature. When its unhappy with me... well... yeah.

A couple of years ago I chemically straightened it. Best thing ever. Loved it. Got back to the states, price is 4x as much here, and they didn't do it as well. After two years, I've decided I can't afford to keep straitening my hair, and just need to let it go back to being a wild beast. This is not an easy task, and requires uber amounts of patience.

One major step towards this end, was cutting it all off. I had been planning the big cut for about 5 months. I measured my hair regularly. Tried to imagine what I would look like with short hair. Contemplated whether or not I could handle the regrowth of curly hair without the weight of the long hair pulling it down.

The only thing I didn't debate about was donating it. Mom thought I was going to chicken out and just get a few inches off. I stuck to my guns, off came the 10 inches. *on a side note, I balled my eyes out for weeks getting used to the fact a lopped off all of my hair... which might explain why the ponytail has been sitting in a drawer now for over a year. So I figured I would make the post, and say my final goodbye, and hope there is a child out there that will love my hair even more than I do.

I think Locks of Love is one of my favorite organizations. I'm a big softy when it comes to kids. And I know the value hair has with a persons identity. And its something I could do without paying an arm and a leg. I always thought it was just for cancer kids, but most of them lost their hair due to alopecia areata, which tends to be a little more permanent than chemo hair loss.

There are so many organizations that raise money and are so focused on fund-raising, that they don't seem to realize the people they tend to ask for money from, or that would be most willing to donate, are those of us who probably need it, or have too many other expenses.

A random tidbit you might not know. If you have shorter hair, or there is shorter hair in your pony tail, or even if you have grey hair, you can still donate it. LoL actually sells that hair to pay for the manufacturing of wigs. The only thing they can't use is bleached hair b/c it reacts badly w/ certain chemicals. But even my chemically straightened hair, or dyed hair can still be used.

So if you are looking for a way to contribute, and money is tight, take a look in the mirror and see if its time for a new hair cut.

On a totally different random freak out note... I take the bar tomorrow.

Tuesday, February 16, 2010

5 Year Cancerversary

Today is my 5 year cancerversary.

I can't believe I'm only 26, but have already had cancer for 5 years.

February 16 also tends to be my least favorite day of the year... in fact over the past few years February in general has just been sort of a shit month. With lowered expectations for the month of February, I don't think you can imagine exactly how overwhelming the awesomeness of this February has been.

But that's not what I want to talk about in this post.

5 is a nice number. Sort of a mile point on how we measure our lives... looking back in 5 year increments. So this is 5 years in review... more for my benefit than anything else... because sometimes you need to know what you've accomplished, even with cancer... and these are totally arbitrary things that stick out in my mind... remember, I'm a travel junkie so that tends to stick out in my mind most as an accomplishment.

Feb. 16, 2005: Got into my first law school, told my results were "suspicious" and had the first of many multiple hour conversations with a boy I didn't really date for over a year (a story for another post).

year 1: Graduated from college, went to mexico a week or so after radiation, climbed a pyramid (dumb idea) went night diving (dumber idea, was stung by sea urchin, abandoned by dive body, attacked by little orange fish and floated in darkness for 20 minutes while the boat tried to find me). Worked w/ handicapped kids over the summer, moved in to my first apartment on my own, Started lawschool, started a law school volleyball team...

Year 2: jumped out of an airplane, (I don't remember this summer), Started grad school, ran a public interest auction, worked at a non-profit immigration firm... helped refugees and family's get in, and got a boy medical care.

year 3: backpacked vietnam, laos, thailand, malaysia, singapore; worked in cambodia, started a space law moot court, help set up a mediation organization as vice president, treasurer, international law society, worked as a district attorney

Year 4: worked in hamburg, germany... backpacked: france, germany, sweden, denmark, poland, russia, luxembourg, Did an international moot court in Canada, organized mediation training for lawyers; started blogging

Year 5: Started and won a mediation competition, graduated from both law and grad school. Won community service award, and Order of Barristers, took a 1912 mile road trip zigzagging through VA and PA, Saw amish country, hit up 2 ren fairs, trip to New York City; asked to guest blog on various sites, developed and taught street health and human rights course to at risk youth, teaching handi-capped swim lessons, peace corps nomination and of course, clean bill of health.

Not too bad from my perspective. Not exactly what I think most normal mid-20 year olds tend to do, but normal was never exactly my thing.

So here I am 5 years later and there's a few things I've noticed lately, the main one being that I seem to be doing all things possible to regain who I was 5 years ago. I sort of want to put myself back where I was when I was 21. I'm back to wanting to go save the world. I'm working to be back at my pre-cancer weight. Recently cut off what was left of my straight hair, so i'm back to having a super curly afro. I realize how superficial that might all sound, but its a big deal. I'm not fighting how cancer has changed my life, I'm just back to being settled in a way, and looking to picking things back up where I feel like I left off... though if it starts to sound like I'm drinking and partying as much as I did at 20/21, someone should probably step in.

And that's where I am here on this 5 year cancerversary.

Thursday, February 11, 2010

Holy Crap, I'm a Survivor!

Blood work results are in. My meds are a tad too high, but everything else is undetectable.

Combine that with nothing showed up on the ultrasound...

In other words, its official.

Just 5 days shy of my 5 year cancerversary...

I am cancer free!

Wednesday, February 10, 2010

Cancer v. Nanobubbles

So I'm a big sci-fi dork, and find the idea of nanobots battling cancer full of cheesy sci-fi movie potential, while also being awesome. I do realize the article says nothing about nanobots, but rather nano particles... but for sci-fi purposes, it would be nanobots... But still, nanoparticles and lasers sound like something from a book. Particularly interesting is how they can target specific individual cells and can make them larger, and has been used in head and neck. I don't know about you, but for someone that deals w/ thyca, this could be huge. I mean, think about it... instead of using I-131 to eradicate leftover cells after surgery, using these little buggers instead? An end to potentially positive tests but where things are too small to biops to be sure. Maybe I'm jumping the gun a little bit here, but there seems to be sooooo much potential. Interested to see where it goes next

Nanobubbles: A New Weapon in the Fight Against Cancer?

Monday, February 8, 2010

The Verdict on a New Doctor

Things that are helpful... actually writing a post before I publish it...

So, after weeks of anxiety, mental exercises, and kicking myself for not going to the doctor sooner, the day of the appointment came and went. I was planning on posting something about my anxiousness before now... but by the time to do it came around I had so much going through my head I frankly didn't care about the endocrinologist any more (after 5 years, I have finally learned how to spell endocrinologist). And things couldn't have gone much better than they did.

I went into this appointment, not really praying for some good, or even using positive thinking... it was more the mentality of this has to go well, there is no other option. Rather than spend the day studying beforehand, I spent my day trekking up and down virginia beach and norfolk hunting down eye doctors and dentists and others to fill out my peace corps paperwork. I figured, why not do multiple things that bring me stress and anxiety all at the same time, and just get it over with. It helped. I was pretty pumped by the time I had to go in.

I got there 45 minutes early... as one of the local high schools was letting out, passed the building, and went to turn around on this back road where apparently all the high schoolers park. You ever want to feel real fear when you are driving, drive down a small road of a parallel parked teenagers trying to get out of school. By sheer luck, the end of this road actually went into the building I needed to go to, so I didn't have to attempt to turn around. As I pulled up there was a very angry man standing in the parking lot, pointing me back to the road. Yelling out, "this isn't a road, this is private property can't you kids read the sign." I had just been mistaken for a highschooler. My shocked response was, "I'm not a highschooler"... his response back, "It doesn't matter this still isn't a road."... "But I'm a patient"... "Oh... these people just cut through here all the time real fast, its dangerous"... He didn't apologize, but I think the sheer embarrassment of yelling at a patient trying to park was enough.

First impressions of the office: I hit the restroom before I went in. It was trendy. After the sterile environment of UPMC... being somewhere trendy was amusing. The walls were done in shimmery tiles, and the sink was a bowl sink... where there's a bowl... that has a drain in it... like i said trendy. I couldn't help but acknowledge this appointment may in fact cost more than I realized. I also picked a doctor in the wealthier part of Va beach, which may have hit on the trendiness. The waiting room was a fantastic deep turquois, and again, shimmery tiles. Probably the most calming waiting room ever.

The doctor: Mellow. Probably in his 40's/50's. As is per usual, he hadn't read through my file earlier. But we sat through it together. He was impressed with my care up till now, and agreed with everything done. Chastised me a little for not coming in sooner, and apologized for the wait. Then to kick off the actual exam, he took me back and ultra sounded my neck right there in the office. No waiting, no prep time, no radiology technician or student. Just him. Honestly, I wasn't mentally prepared to do an ultrasound right off the bat. It really is my least favorite thing to do, and I panic a bit. But he went hrough, and as he finished a section told me what he saw, and when my head was towards the machine, watching him measure nodes, he pointed out that it was benign and the middle bit I saw was just some fatty deposit. And then he cleaned me up like a baby, and told me everything looked clear, even my thyroid bed, which is what they had concerns about a year ago.

The plan: So we developed a new plan of action, pending blood work. Basically, he pointed out that the last round of radiation was based on a slightly elevated Tg level, and something that showed up on a pet/ct, but not on a RAI scan. So technically, they never really confirmed there was in fact cancer there. And now he didn't see anything on the ultra sound, so pending the blood work, things there's a possibility that I could have been cancer free for a while now, or at least everything slowly disappearing. He pointed out that the Tg could have just been some lingering thyroid cells, that weren't actually cancerous, but w/o biopsy no one would ever know. He still agreed w/ the course of treatment I was given b/c of how unusually aggressive my thyca was (he even broke that down to say i'm probably in a bout a 5-10% group w/ papillary thyca that aggressive). But he doesn't think a thyrogen stimulated round of blood work would be particularly helpful now, and maybe my body's been run through the gambit enough over the last 5 years. Needless to say, i'm cautiously happy about his opinion.

Blood Work: Our only point of contention was here, and it was only minor. I asked him if he tested free T3, and he said not normally, and asked me if I wanted it tested. I told him I did, and he let me know it wouldn't change his course of treatment, but he was willing to do it. This is also the point that actually impressed me. He asked if I've ever had a CBC work up, which I haven't, and he was like, "I want to run this because of how much radiation you've had." Shock and Awe! He wants to follow-up to make sure the radiation hasn't damaged my blood. I also told him to throw in my vitamin D levels for good measure.

Follow-up and the peace corps: I told him about the peace corps and gave him the paper work at the start of the visit and he never blinked an eye... except to ask me w/ my education if I would be getting a bit higher of a position. When talking about when my next visit would be, we planned for 6 months, so he could see me before I shipped out. It was like it never even occurred to him that the whole cancer thing might be an issue, and be part of the reason that I was sort of twitchy and anxious during the whole visit. So finally, I asked, do you think this should be an issue? And he just looked at me, sort of surprised, and was like, "no, why should it? Get blood work done once or twice a year. Do you have a plan for getting it done already? Both morocco and jordan have decent medical facilities that should be able to look at your TSH, T4 and Tg... be great if i could see you once a year, and there's always Dubai." My response was, "you should write that down on the paperwork... the peace corps needs to send me to Dubai once or twice a year for blood work." And that was that. A doctor told me that I should be fine, and even though he didn't really know me, it sounded like I would do well.

And that was it. 2 hours of my life w/ a new doctor, and the rules of the game have suddenly changed, and things are looking better than they have in a long time.

And a final story, while the nurse was taking my blood pressure, she was reading my wristbands, and was, like, "stupid what?"... "stupid cancer"... she looked a little closer at the wrist band, saw it was flipping her off, and just started cracking up.

So this is my "Fuck you cancer, you can kiss my ass, I'm getting my life back," moment.

Monday, February 1, 2010

How do you move forward in life, if you can quite seem to move on from cancer?

This is actually a post I wrote back in June. Though a little out of date, a lot of bits are still relevant, and I figured I should just go ahead and publish it for all to see.

By now, you should have gotten the point that things for me are sort of in a rapid state of stagnation. I've finished with school, I've moved from Pittsburgh, I'm supposedly looking on to bigger and brighter things. Rapid amounts of change, with certain constants. I still have cancer. I still need to block out time in my life to deal with cancer. I'm not even technically in remission, so I still need to be on high alert if I can feel anything change. In the ideal world, my last round of radiation would have obliterated whatever cancer cells I had left. I would be on a set schedule of six month-year check-ups, w/out extra testing or scans, or uncertainty. The drama tagged along with actively still having cancer would be done. And that would be how I wrap up one chapter of my life, in a nice little package, so I can start fresh, with the next chapter. Only minor strings and hassles attached.

If only the world functioned that way.

Am idolizing that sort of situation a little too much? Can cancer survivors really move on with their lives w/out it plaguing them? I almost feel like, and especially for young people, cancer just stays with you. I'm a bad person to judge on this. I've had too many false hopes, and too many recurrences. I think it would take me at least 2 years before I would accept a clean bill of health. And even then, and I know this from the 1 year of "clean" health I had, I wouldn't know quite who I was without the cancer label; how I should react, trying to figure out what really is and isn't worth worrying or caring about.

I think thyroid cancer has its own special ways of reminding us we will never be better, or who we were before. You lose an organ. A whole one, right off the bat. You will be taking a pill every day for the rest of your life. And for young adults, the rest of your life is a pretty long time.

Which leads me to the question... is it different for older people? People who have solid lives; who aren't necessarily at a point of massive change? People with jobs, and families, and homes?