It's been ONE YEAR since my first taste of chemo

I intended to publish this blog last Friday, September 4, which marked ONE YEAR since my first chemotherapy infusion. Unfortunately, I missed my "newshook", so let's just pretend it is September 4, 2015:

It's been a whooping 365 days since my first infusion of ABVD. It's only been a year, but it feels so much longer. This blog has been my way to reflect on my diagnosis and treatment, and if you've been reading along, you can tell I've done a lot of reflection in the last year (I apologize to your poor squinting eyes that have stared at the computer screen this whole way). But, rather than analyze and reflect, I'm going to celebrate. It's been one hell of a year that I wouldn't have wished upon my worst enemy (some of you might know who that is, but I swear, this still holds), and I couldn't be happier to put this all behind me.

Whether you just started battling The Hodge or any other type of cancer, I'm going to borrow the phrase that LGBT activist campaigns use: IT GETS BETTER.

It really, really does.

Even if it's still hard and still shitty and you still have your fair share of down days (which, trust me, you will -- in a lot of ways my post-treatment period was more difficult than treatment itself), the fact that you do not have to revolve your life around 2 week infusion cycles -- let alone receive chemotherapy -- is something that you should celebrate and revel in. I know I said I would never call chemo poison, because it saved my life and all that, but man, it really sucks. Trust me, even if the rest of your life is in shambles, once you get that last IV things will instantly get a little better.

Okay, so I reflected a little. But I always want to celebrate! Here's what I've done since chemo. Yes, this is a little big of a #humblebrag, but I'm okay with that, because, guys, IT GETS BETTER:

• Flew back out of my nest in my parents house in Minnesota and returned to my life in Brooklyn. Living on the east coast has really made me appreciate my Midwestern roots, and all of the support from family, friends, and my healthcare team in the last year reinforced that. While I may be gone for now, I doubt I will stay away forever. 
• Got a job. More correctly, I went back to my job pre-diagnosis. It's only been a short time since I've been back but I was able to just jump right in and not have to deal with the learning curve that comes with new jobs. To all of my colleagues: thank you for taking me back! 
• Started grad school! This has been something I've wanted to do since I graduated from undergraduate, but for various reasons (namely, my aversion to student loans), I had kept procrastinating. As they say, there's nothing like cancer to make you carpe diem! I am taking two classes this semester towards my MS in Higher Education Administration, and am totally loving being back in student mode. I'm a little nervous about balancing work and school, but something tells me it will probably be at least a tad easier than chemo...
• Went on a life-changing kayaking trip with First Descents. Seriously, guys, adventure therapy is the best kind of therapy.
• Had a clean 6 month post-treatment scan. Let's keep those coming, universe.
• Grew hair! While it's growing way slower than I'd like, I am happy to report that I have a healthy head of hair coming in. Here's how it looks 6 months out of treatment. It's not there yet, but it's a definite improvement from my Donald Trump comb-over days. Speaking of Donald Trump, check this out if you want to be both amused and terrified (you can thank Scott for that one):
  
• And, last but not least....

Drumroll...

WE GOT A DOG!

Internet, meet Mads!

After YEARS of drooling over other people's pups, I finally wore Scott down to get a little pup of our own. His name is Mads (his full name is Dr. Hannibark Lickter, inspired by the amazing Mads Mikkelsen's portrayal of Hannibal Lecter. NBC's Hannibal got canceled the night before we got him, so we figured what better way to honor the show?). He's a mutt from the wonderful BARC shelter in Brooklyn and is about 8 months old. I always told myself I would never get a puppy, but hey, the heart wants what it wants. We've had him for about 2 months, and aside from being a bit nippy (he was named after a cannibal, after all), it's been pure puppy bliss.

Okay, that was me celebrating. Now it's time for some #realtalk. While I am lucky enough to celebrate being in remission from The Hodge, not everyone is so fortunate. Hodgkin's is often referred to as one of the "good" cancers because of the likelihood of being cured. The survival rate is over 85 percent, but even with the good prognosis, over 1,000 Americans still die each year from Hodgkin's lymphoma. Holland C. Gregg, IV was one of them. After three years of fighting The Hodge, he passed away in 2005 at age 26. Holland was part of the 10 percent of cases that do not respond to conventional chemotherapy treatment. While ABVD and, for more advanced cases, BEACOPP and eBEACOPP, do the trick for most people, if those attempts fail the next step is salvage chemo (which is even MORE toxic) and a stem cell transplant, which is not only extremely hard on the body -- it's still not a guaranteed to kill the cancer.

Holland's family is working to help find a different, less toxic way to cure Hodgkin's and other cancers using immuotherapy. They've established the The Holland C. Gregg IV Research Fund to raise money to advance the immunotherapy work being done by Catherine Bollard at Children’s Hospital in D.C. and Baylor University in Austin Texas under Hellen Hissup. Immunotherapy is a hot topic in Cancer World, and it really seems like the New Frontier for killing cancer. If you have a few bucks to spare, please consider donating. You can read more about Holland's story here.

So, moral of the story is life moves on, and it gets better. I still think of cancer almost all the time, though slightly less than I did while I was in the midst of treatment. I will probably always think (and worry!) about cancer, but thankfully I am better equipped to cope with uncertainty-factor, which is the worst part about having had cancer. There is life after cancer, so keep chugging along and don't let those asshole mutant cells damper your days.

Adventure therapy is the best therapy

Last month, I had one of the best weeks of my life in Tarkio, Montana on a white water kayaking trip with First Descents. For those of you who I have not gushed to in person, First Descents is an amazing organization which provides free outdoor trips to young adult cancer survivors. Here's a more eloquent description of what they do, courtesy of their website:

First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.  

During the First Descents experience, young adult survivors and fighters are empowered through conquering legitimate outdoor challenges to push their limits and face their fears, and by doing so, they are able to regain the confidence and self-efficacy lost to cancer. 

Pretty awesome, right? Can I get a whoot whoot?!

I found out about First Descents pretty early into my treatment for Hodgkin's, and I immediately signed up. Even though I live in a concrete jungle -- the concrete jungle -- I love the outdoors, especially anything that has to do with water. Before my diagnosis, I had been wanting to plan a trip out to Glacier National Park in Montana -- which I have been obsessed with for quite some time -- for some hiking, kayaking, and outdoor adventure, so imagine my jubilation when I found out that I could go to Montana and go white water kayaking (for free!). All I had to do was finish chemo. Not a bad deal, right?

This trip definitely helped me get through my down days with treatment. I kept reminding myself that in just a few short months I would be on the river, battling white water rapids, and would be feeling like my old self again. Soon enough, I was done with treatment and it was time to pack up and head West.

Aside from a skiing/snowboarding trip to Colorado and a couple of trips to California, I've never been "out West". I had always wanted to spend a summer working at a national park, but internships, then jobs, and life always got in the way of that. It took cancer to get me there, and while I am by no means happy I got cancer, I'm happy that it gave me the time, excuse, and opportunity to have such a transformative experience (#yolo!).

So, where to begin?

After a long morning of travel, I arrived in Spokane, where I met up with a few other campers before our ride arrived. Everyone clicked almost instantly, and by the time our "counselor", Patch (that's a nickname -- more on that later), arrived to pick us up, we went from being strangers to close friends. FD is an organization that is all about trust, and the airport meeting was the first time I really had to "trust" them. I mean, meeting up with a bunch of strangers to go to a secluded spot in the wilderness? Sounds like the beginning of a horror movie if you ask me. However, from our initial airport meeting to our wonderful conversations during the 3 hour (gorgeous!) drive deep into western Montana, I was instantly sipping the FD kool aid.

So, about this nickname thing. To really get the full FD experience, you have to take a break from "real life". One way to do this is by ditching your "human name". Most nicknames have to do with a hobby or passion or the like. For instance, our chef's FD name was Lambchop, because she (shockingly!) likes to cook. Others were a little more random -- Moose, for instance, got his FD name because on the drive to Tarkio he spotted a moose from the car. I was one of the few "campers" that was familiar with this tradition beforehand, because I had the chance to attend some local NYC FD events and got the d/l before my trip. Once I learned about the nicknames, I instantly knew I wanted to do something to incorporate the memory of my boyfriend, Scott's, older brother, Peter, who passed away from cancer about 10 years ago at the age of 19.

Here's Pete, wearing a 24 sweatshirt. He later got to visit the set of 24 and even make a guest appearance!

While I did not get the chance to meet Pete, I almost feel like I knew him because of all the wonderful stories I have heard about him from Scott and and the rest of his family and friends. As Scott's mom, Jenny, puts it, Pete was the strongest athlete she will ever know. He was an athlete in the sense that he loved sports, but Jenny is referring to his endurance and drive to keep a positive attitude during his treatments. While my treatment protocol was no walk in the park, his was downright hellish, with multiple surgeries and long stints of in-patient chemotherapy.

Unfortunately, FD wasn't around while Pete was going through treatment, but I have no doubt that he would have been super stoked to go on an FD trip if he had the opportunity (he did get to do Make a Wish, which flew him out to the set of 24, then his favorite show, where he got to meet the cast and crew and get a cameo on the show. Peter definitely charmed everyone at 24 -- to the point where they invited him and his family out to the set two more times.). Here is a nice write up on Pete from a local newspaper if you'd like to know more about him and his all-too-brief journey.

Pete's nick name was Mez, which is a shortening of his last name. I decided to take that name and add my own spin to it, and dubbed myself "Mezzy" for my FD trip. At first, everyone was a little bit confused. Most people thought it was "messy", which would have also worked with me because I tend to struggle with keeping my room clean (yes, I'm 27 years old, but it's still something I have to work on each and every day!). But then, at the first night's "campfire" session (campfire is in quotes because we did a mock campfire indoors, because we were in Montana, aka Wildfire Country, and the conditions were too dry to do it outdoors), I explained the story behind my nickname name and from then on I was referred to as Mezzy. Jen who?

Now, on to the meat of the FD experience: white water kayaking! Only 1 out of 12 of us campers had been white water kayaking -- and the one who had done it before had only just recently tried it on an FD day trip. I have been in a kayak numerous times on lakes or more mellow rivers, so while I didn't have the white water experience, per say, I felt pretty comfortable taking on some rapids. After all, it can't be much different, right?

Let's just say that my ego definitely got checked at the door the minute we got to the water. Unlike more mellow kayaking, white water kayaking requires you to be strapped in because you're being thrown this way and that way. You're strapped in by a "skirt", which is attached to your waist and then stretched over the opening to keep the water out and you in.

Sparkles and I modeling our sexy kayaking skirts. #fashionistas

The first thing we did was practice how what to do if we flipped (which, to my dread, we were told right away would most likely happen). In kayaking, there are three ways to handle this. The first option is to do a "wet exit", in which you undo your skirt and swim out (while you're underwater and upside down). This isn't really the preferred way to go about it, because with a wet exit you, your kayak, your paddle, and anything else you're carrying in your boat, goes tumbling down the rapids and it requires a lot of help to get everything back together and to drain your boat.

Instead, our guides preferred us to wait for them to do an "assisted rescue", where they come to you and put their boat near your hands (which are pathetically flailing in the air while you're upside down and underwater), and you use their boat to help pull yourself rightside up. This is much more efficient because you don't have to worry about getting separated from your boat and draining it, etc. The guides promised that they would get to us in 3-5 seconds if we flipped. That being said, the first time you flip and you're underwater and upside down, 3-5 seconds is a LONG TIME, and most beginners panic and just want to get to the surface for air, which is why we spent much of the first day practicing wet exits. The last way to handle a flip is to roll yourself over, but this is a skill that takes awhile to learn, and while a few people did eventually get it on my trip, most of us (including yours truly) were helpless little creatures who had to resort to options 1 or 2.

After practicing our exits, we did a few small rapids and then called it a day. While I had a shit ton of fun, I was also terrified. White water kayaking is a lot different than kayaking on still water, and it requires a ton of different skills. I almost flipped a few times, which really psyched me out. It's one thing to learn how to do a wet exit, or practice waiting underwater for an assisted rescue in controlled conditions, but it's another thing for it to happen IRL with raging rapids sweeping you down the river. Let's just say that Anxiety Gurl was on high alert all day.

A few people flipped the first day and said that it's just one of those things that you should get out of the way so you're not as scared. HA! That might work for normal person, but for Anxiety Gurl that shit wasn't going to fly. I WOULD HOLD ON TO THE DEATH. Unfortunately for me, by Day 2 we did a more challenging part of the river and I was forced to tackle my nemesis, the rapids. I started going down close to one of the other campers, Moni, along with one of our guides. I flipped almost instantly and of course started to panic while I was underwater. I heard the guides' soothing voices in my head, "We will get to you in 3-5 seconds. Just stay calm", but the minute I was underwater I said "SCREW THAT!", unhooked my skirt, and swam the hell out of there. Little did I know that while I was spazzing underwater, Moni -- my sweet, wonderful, nurturing Moni -- tried to do an assisted rescue and help me up. In her moment of courage, however, she also flipped and did her own wet exit. The poor guides then had to deal with what is called a "yard sale" where there are multiple swimmers, boats, and paddles to deal with. Luckily, our photographer, Goose, happened to get shot of all the chaos. For your amusement, I am underwater in the red kayak that is flipped, Moni (my hero!) is in the green kayak trying to rescue me, and Jus, one of the guides, is in the purple kayak rushing to our rescue.

All of this -- from flipping, to wet exiting, to getting rescued by the guides and being pulled to calmer water -- probably took no more than 10 seconds, but going through it seemed way longer. While I was a little frazzled after The Incident, I quickly regained my composure. It was by no means a fun experience, but it wasn't as bad as I had feared. Everyone was right; it is just better to get the first flip out of the way so you're less paralyzed by a fear of flipping.

In addition to kayaking, we also got to spend one day doing "alternative crafting", where we could try other vessels on the water, like rafts or duckies (where are basically inflatable kayaks without the skirt). It was a really nice way to break up the trip, and after a few hard days of kayaking, it was almost relaxing to experience the river in a different way. Both rafts and duckies are a lot more stable than kayaks!

While the whole trip was amazing, the last day sticks out the most. After building up our skills for four days, we were heading for the big rapids (by big, I mean class 3 rapids, which are "big" but they're nothing like what the pros do. But Rome wasn't built in a day, right!?). These bad boys basically submerged you and then popped you back up. We went one-on-one with the guides since it was basically assumed a lot of us would be "enjoying" some time under water. Somehow, I managed to make it through the first rapid unscathed, but I knew I didn't want to push my luck for the even bigger one (yes, I had already flipped, but that was 3 days ago -- which, on river time, felt like FOREVER ago -- so my fear of flipping re-established itself).

For the final big rapid of the trip, we had a choice to go to the left, where the water was calmer -- there were still some rapids, but nothing too crazy -- or to go right, where the Big Bertha wave was. Again, we went one-on-one with a guide in case we needed a rescue. Dishes was my guide for this rapid, and he asked me which route I wanted to go on.

"LEFT! LEFT! PLEASE, FOR THE LOVE OF GOD, LEFT!" I wailed.

"Are you sure? You have the skills to go right if you want to." Dishes said.

"Are you kidding? I don't want to flip! We're going left!"

Dishes kindly led me to the left where the cute baby waves were, to my relief. However, the river had other ideas and sucked me to the right. All of the sudden I was in the midst of the Big Bertha wave, being pretty much completely submerged and then popping right back up. And somehow, I made it all the way through!

Here I am about to battle Big Bertha

When all is said and done and I had made it through the waves, I was so, so, happy that the river had other ideas and pushed me to challenge myself. I literally couldn't stop giggling afterward. I was finally at a point where kayaking wasn't really that scary anymore; it was just really fucking fun. My only regret is that I didn't have one more big wave to try where I could intentionally choose the harder option, rather than just get thrown into it because of incompetent paddling.

In a lot of ways, the river really is a metaphor for life, which is something we often talked about at our nightly campfire sessions. Here's a few things I took away from my time on the river, which I will carry with me the next time I kayak (there will be a next time, I can assure you), and through my day-to-day life:

• Challenge myself, whenever and wherever possible. The Big Bertha wave was the highlight of my time on the river. It would have been easier to cling to the side and avoid it, but I doubt I would have had the same sense of satisfaction afterward. Risks = rewards!
• Just go with it! I may have mentioned a few times on this blog that I'm kind of a control freak. I like things to work on my time and my way. Who doesn't? But unfortunately -- from your job to your health to your relationships -- things usually don't work out how you planned. The river forced me to be flexible and to be at peace with things I couldn't control. Of course, as I mentioned above I will probably try to fight it, tooth and nail, because I am who I am, but once you finally accept that sometimes you're NOT in control, things get a lot easier.
• People are special, wonderful, beautiful creatures. I often forget this as I'm trying to cram into busy subways or avoid the old cranky dude in my neighborhood who yells at me for walking my dog on the (public!) sidewalk in front of his apartment. Truthfully, this city makes me despise humans 99% of the time. But each person I met on my FD trip -- the campers, the lead FD staff, the river guides, the cooks, and the volunteers -- was amazing. I mentioned before that FD is all about trust. Not only are you trusting your fellow campers when you reveal an intimate detail about your life or your cancer experience; you are also trusting the guides to come help you if you flip on the river. Even though I knew these people for just a few short days, I feel incredibly close to everyone. While I by no means want to be buddy-buddy with cranky old stoop dude in my neighborhood, this trip was a good reminder that most people are inherently good, want to help, and want to make your life better. Even (the optimist in me likes to believe) New York City assholes!

Believe it or not, this is just the tip of the iceberg of how awesome my FD experience was. There were so many other amazing experiences and conversations that I don't even know how to begin putting into words. 

I'll close this super long post by discussing one of the conversations we had on the last day, while having lunch on the river, on the importance of adventure. There is no rational reason why humans choose to attack crazy rapids on a puny little kayak. In fact, white water kayaking -- at least at advanced levels -- is actually irrational because of how dangerous it can be. Unfortunately, people die in this sport, and, as we all discussed at campfire one night, kayaking and cancer are a lot alike in one way: they take people who are far too young. 

That being said, white water kayaking is amazing. Like, probably one of the coolest things you will ever do amazing. It's not only fun, but as I mentioned above, it teaches you a lot about "life". As Uncle Dirt, one of our river guides said -- more eloquently than I am summarizing here, but just go with it -- the need for adventure is a primordial human desire. Yes, most of us live in big cities and sit in front of computer screens all day, but that doesn't mean that we don't also need to experience a good, old fashioned adventure once and awhile. Unfortunately, most people don't get this opportunity, whether it is because of external obstacles like money or family obligations, or psychological ones like being afraid of going outside of your comfort zone, but for those of us lucky enough to have had a taste of it, it will forever be something we crave.

Thanks, FD, for helping me get my mojo back, and for providing me with a truly life-changing experience. Now that I had my experience, I'm excited to give back by fundraising. If you have some dough to spare, please consider donating to this amazing organization. My goal is to reach $2,500, which will provide the same life-changing experience I had to another young adult battling cancer. Thanks for reading this Tolstoyesque blog post, and as a reward for your patience I'll leave you with one more breathtaking photo of the majestic Clark Fork River:

If you get cancer, you should quit your job and go on Medicaid

Duh duh duh...

A POLITICAL POST!

For the most part, I've kept this blog pretty apolitical. After all, cancer doesn't care if you're a Democrat, Republican, or an Independent. However, by nature I am a political gal, and now that I'm out of the trenches of treatment, I thought it would be good to share my feelings and experiences with the U.S. healthcare system, and what cancer patients can do to help ensure that they will get through their treatment without crushing medical debt.

So, before I get into the thick of things, let me disclose something: I am a loud and proud liberal Democrat. FDR is my favorite U.S. president, and I think President Barack Obama will go down as one of the best presidents in modern American History. It's not just the whole healthcare reform thing -- which was, in the words of Vice-President Joe Biden "a big fucking deal" at the time it was signed into law in 2010 (after all, most U.S. presidents since Theodore Roosevelt have tried to pass some sort of healthcare reform legislation), and which has been even more successful than even its strongest proponents calculated. President Obama has taken this country from the depths of a recession into a period of (relative) economic stability, been the first president in U.S. History to support same-sex marriage (which then set the stage for SCOTUS to make that the law of the land), and has been an overall champion of a strong, resilient middle class for the 21st century.

So, that's where I stand on the political spectrum. To my Republican friends out there -- please keep reading and keep an open mind. While the issue of healthcare is highly politicized in our country, what I'm going to say in the next few paragraphs really has nothing to do with politics and everything to do with saving lives -- literally, emotionally, and financially.

You may have gathered from my headline that I recommend that if you get cancer, you should quit your job and go on Medicaid. Of course, for most people it is not that simple, but if you happen to find yourself in a similar place as I did -- getting cancer at age 26 or older (when you're no longer eligible to be on your parents' plan), not married, and making a modest salary (I worked in education, which I loved, but let's be real...it doesn't pay the bills like being a Wall Street investment banker would!) -- I'd highly recommend that you at least consider resigning from your job and enrolling in Medicaid. After all, jobs will come and go -- the average American worker now stays at one job for just 4.4 years, according to the Bureau of Labor Statistics -- but medical debt can, unfortunately, last forever.

My situation was perhaps a little different from most. I had been living and working in NYC at the time of my diagnosis. Before I even knew Medicaid was an option, I wanted to move back to MN, where I'm from and where my family lives, for treatment. Since I was not eligible for FLMA at my old job, my only option was to resign. After I made my decision, my parents and I looked at what my options would be on the MN healthcare exchange website (https://www.mnsure.org/). We figured I would be eligible for some sort of Obamacare plan. However, given that I no longer had an income, I was eligible for Medical Assistance, the Minnesota term for Medicaid.

At first, I felt a little guilty going on this. Even though, as I mentioned above, I am a liberal Democrat, I felt there was a stigma attached to Medicaid, and that I was somehow "cheating the system". After all, I was a college-educated "white collar" professional. I was upwardly mobile! I had a 401K (not that there's much in it, but still)! Medicaid was for "poor people" who were too lazy to get a "real job" (for the record, I never personally thought this, but unfortunately I think this is how our society views those on Medicaid, which made me feel uncomfortable going on it). However, when you have a life-threatening disease, you don't really have time to think about politics, so I took the leap and quit my job, moved back home, and enrolled in Medicaid.

Thankfully, Minnesota has one of the most generous healthcare systems in the country, and I was able to get treatment at the University of Minnesota, which is top-notch when it comes to oncology. I was never treated as a second-class citizen, or a leech on society, or any of the other awful things people on Medicaid or any other sort of public-assistance program are often thought of, at any point in my treatment. And for that, I feel extremely lucky. I feel even more lucky that, aside from co-pays (which were pretty minimal), my treatment was 100% covered -- this includes visits, medications and scans.

To be honest, I have no idea of the total cost of my treatment. But just to give you some perspective of how expensive saving yourself from cancer can be, let me share one medication I do know the cost of: Neulasta. You'll remember that I had to get an injection of Neulasta following each treatment of chemotherapy because of my severely low white blood cell count. Oh, it's just a quick injection, how much can that cost? Well, it came with a very hefty price tag: FIVE THOUSAND DOLLARS. I kid you not. The first time the nurse brought it out she breathed a sigh of relief, as oftentimes many private insurance plans do not cover it. I did this injection 11 out of 12 treatments, so if I would have been uninsured, or had insurance that didn't cover it, I'd be in the hole $55,000 -- on top of what the other medications and scans would cost. I am honestly nauseated at the thought of what my medical debt could have been.

Now, there is a reason why healthcare is so expensive in this country. It's a private market, and medicines that work are worth a lot. Profit is what drives these ground-breaking, life-saving medical innovations. And for the most part, this is a good thing. However, I don't know about you, but that figure seems absolutely insane. Like, unfathomable. And unfortunately, for many people this is the reality of what it costs to save their lives.

This is why I encourage anyone who is recently diagnosed to at least consider this option. While I know this isn't an option for many people -- maybe you cannot afford to not be working (thankfully, I was able to move back in with my parents, who kindly took me back into the nest), or you live in a state with a really crappy Medicaid system, or you are working your dream job and don't want to leave it -- if you're somewhere in between, it might be worth putting your professional life on hold to focus on getting healthy in a reasonably affordable way, especially if you have additional debt from student loans or a mortgage or whatever.

Without Medicaid, I would never have been able to return to my life in NYC. Without Medicaid, I would never be able to go to graduate school, which I am starting in the fall (and am super stoked for!). Without Medicaid, I would never be able to have my positive outlook on life and what I can do in my life, because I'd be too busy worrying about how I would dig myself out of an impossibly deep hole.

So there you have it. Medicaid saved me -- literally, emotionally, and financially. It's allowed me to resume my life and become a productive member of society again. And, most of all, it's allowed me to continue to follow my dreams and not let my life get bogged down by shitty circumstances beyond my control. And for that I am beyond thankful.

Wherever you fall on the political spectrum, I urge you to keep an open mind about government programs. Sure, many of them don't work as well as they should. In fact, many of them don't work at all. But there are many that do, and rather than vilifying them, we need to realize that these programs benefit real people. And in my case -- and many others -- they even save lives.

We live in the 21st century, in the richest country in the history of the world. We've made incredible gains in science. Diseases like Hodgkin's lymphoma, which used to be a death sentence, are now just a shitty bump in the road for most people. If we as a society can do that, certainly we can figure out a way to make quality healthcare affordable. But until that day truly comes, I am thankful that I was able to rely on Medicaid, and I encourage anyone else who is unfortunate enough to find themselves in Cancer Club to at least consider it as an option.

Thanks, LBJ!

LBJ, accompanied by President Truman, signs Medicare and Medicaid into law on July 30, 1965

First post-treatment check up = all good!

A few weeks ago, I went in for my first post-treatment check-up. This was just an exam and some blood work, so no scan this time (that will come in August -- gulp). Thankfully, everything looked and felt normal, though my white blood cells were still a below the low-end of normal, which Dr. Peterson said was not out of the ordinary considering my poor wittle immune system was under assault for 6 months with crazy strong medications. While I am happy about the results, I'm still a little nervous since my blood work and everything else -- well, everything minus the giant hard, fixed lump above my collarbone -- was pretty normal before I was diagnosed, so a scan is the only way I'll feel real closure that I am still in remission.

My scan will be in early August, so I have some time before full-blown "scanxiety" set in. Relapses generally occur at the original site of disease, so in my case any relapse would likely manifest itself in that node above my collarbone or in my chest. I routinely feel my neck and collarbone area for any possible lumps, but for obvious reasons I can't do that for the node in my chest. This is why follow up scans are important, since most people with Hodgkin's are diagnosed at stage 2 or onward.

Image courtesy of lymphomanation

By definition, stage 2 means the hodge is "in 2 or more groups of lymph nodes or an organ and 1 or more group of lymph nodes. In both cases, the 2 sites of lymphoma must be on the same side of the diaphragm." Most people on the forums and blogs I've read who are stage 2 or onward have had a lump in their neck or, most commonly, their collarbone, as well as an infected node in their chest. It's easy to monitor any changes in areas that are accessible, but not behind the chest cavity. Thankfully, it's standard for oncologists to scan patients every six months for the first year, and then once a year for a few more years, to make sure there is no activity lurking in difficult to reach areas. To my hypochondriac/health-obsessed hodgers out there, I can't stress enough the importance of staying up to date with your post-treatment scans!

So, my appointment was smooth and painless. However, I did have one unfortunate observation. During treatment, I was always the youngest patient in the waiting and infusion rooms. There is no surprise there, since cancer rates increase with age. Yet for whatever reason the waiting room was filled with young patients this time. I couldn't help but overhear a particularly sad exchange between the check-in receptionist and a patient:

"Do you have a port?" she asked.
"A what?" he replied.

She quickly put on a smile as she said, "Nevermind. The doctor will see you shortly."

I had no idea what a port was before I found myself in the midst of the cancer world, and this young man -- who couldn't have been over 30 and looked as healthy and as strong as an ox! -- didn't either. And why should he? Cancer should be one of the last thing a young person should have to worry about.

I don't know what kind of cancer he had, but my fingers are crossed that his treatment goes well, and that he'll come out of everything healthier than ever.

While young adult cancer is by no means "common" -- hence why it was so surreal to see so many young people at the oncology office -- the National Institute of Health estimates that over 70,000 young people (ages 13-39) are diagnosed with some form of cancer each year -- representing about 5 percent of all cancer diagnoses. Cancer is a shitty thing no matter how old you are, but there are issues unique to young people which makes cancer particularly difficult to deal with. Luckily, there are many organizations that can help young adults with cancer-related issues ranging from anxiety/depression to financial woes to how to pick up your life after a cancer diagnoses. Here are a few that I have found to be particularly helpful:

1. First Descents
2. Gilda's Club
3. Cancer Care
4. Cuck Fancer
5. Stupid Cancer
6. Cancer and Careers

Here is another list of even more organizations and scholarship programs. 

In other medical news, I went to the dentist for the first time in close to two years. I was just about to go for a check up and teeth cleaning when I was diagnosed last summer, but had to put it on hold during treatments because of a risk of infection. I had to continue to delay it because of the two extra months of blood thinners, which meant that by the time I was in The Chair I was terrified that my mouth had become a haven for cavities. Thankfully, my body seems to have done its job in that department, and I was cavity free! The highlight of the visit is when the dentist said that everything was "pretty uneventful and boring".

After a year of horrendous medical news -- with most doctor's visits for treatment, rather than preventative care, to be called "pretty uneventful and boring" was like music to my ears!

First post-treatment scan = CLEAN!

I will pull a Dr. Peterson and cut right to the chase (he knew I didn't want to engage in any small talk before we addressed the elephant in the room -- my scan): my post-treatment PET/CT scan came up clean, which means I'm officially in remission!

As you can imagine, I am absolutely elated! While the statistics were in my favor -- research shows that about 90% of Hodgkin's patients who have a clean interim scan also have a clean post-treatment scan -- I was still incredibly nervous. Chemo was much easier than I anticipated, but I still wanted more than anything to be done with all of this cancer crap. Let's just say that it was a very unpleasant 24 hours leading up to the scan.

And it turns out there is a term for this: scanxiety.

Deep down I really believed that I would be okay, but the days leading up to the scan -- and then the awful 24 hour waiting period -- really tested my so-called glass half full mentality. Sure, 90% of people turn out just fine, but what if I was part of the 10% who have to continue their battle? After all, I had the misfortune of getting diagnosed with super rare cancer; who's to say my string of bad luck wouldn't continue? You know what they say: when it rains, it pours!

It was with that attitude that I walked into Dr. Peterson's office preparing for the worst. So when he gave me the all clear, it took a few moments to settle in. Even now -- three days later -- I am still sort of in disbelief. I suspect I will continue to feel this way, at least for the immediate future. From reading other Hodgkin's survivor stories, it seems like it takes a good year (at least) to no longer feel anxious about every little pain or bump, and to fully accept that your body is healthy.

So until I feel that sense of health zen, I will try as hard as possible to balance my hypochondriac tendencies with positive thinking.

Here are a few other takeaways from my scan and my meeting with Dr. Peterson:

• My PET scan was clean, but my CT scan still showed the lymph node in my chest is enlarged. This is very common with my type of Hodgkin's (Nodular Sclerosis), which oftentimes leaves permanent scar tissue. Dr. Peterson said it will probably continue to shrink, but it may never go back to its regular size. 
• I am officially blood clot free! That's right, folks, the pulmonary embolism that came up on my interim scan has completely dissolved.  
• Even though I'm cancer-free and getting healthier by the day, I am still considered immunosuppressed, and likely will be for about a year or so. Stupid germs always trying to cramp my style!
• I feel pretty much 'normal', but Dr. Peterson says in a few months I might start feeling even better as my body gets stronger, which is something I'm totally cool with! 
• While I have a pretty good chance of staying cancer-free, if I were to relapse, it would most likely occur within two years of treatment. I initially figured if I were to relapse, I would be put on a more intense chemo called ICE (Ifosfamide, Carboplatin, Etoposide) and then undergo a stem cell transplant. That is the general next course for refractory Hodgkin's. However, Dr. Peterson said that since I didn't do radiation as part of my front-line treatment, if it comes back, radiation -- and no additional chemo or stem cell transplants -- could be an option for treatment. It sounds weird, but that actually made me happy. While I hope that the hodge is dead as a doorknob, it is somewhat comforting to know that it is theoretically possible to kill it with a simple round of radiation. This makes me wonder why radiation is ever given as part of front-line treatment. Sure, it improves the odds of a relapse a bit, but once you do it, you can never use it as a treatment ever again. So those who relapse after getting radiation would immediately have to go for the stem cell transplant. I'd rather skip the radiation -- and the nasty long-term side effects -- and only use it as a last resort if I were to relapse.

While I'm not officially done with Hodgkin's, I feel pretty confident that I've made it through the worst of it, and the next few years will just be a series of uneventful check ups and scans. 

In other news, I am officially moving back to NYC on April 3rd! Scott and I booked our tickets a few weeks ago, before I knew the outcome of my scan. I was a little bit worried I would be jinxing myself, but the tickets were cheap and after a six-month hiatus, all I wanted to do was return to my regular life, even though I will miss all of my Minnesota friends and family. Now I just need a job, and in my field (higher education), that might even be harder than fighting cancer!

I also just came back from a wonderful family vacation in the Dominican Republic to celebrate being done with chemo (this was pre-scan, so that was still the elephant in the room) and my mom's 60th birthday. Minus some...gastrointestinal issues that struck our group, we had a great time! I brought my wig with, but the minute we touched down in the tropical weather I said, "screw it" and instead pranced around in my very short "pixie". Chemo makes your skin extra susceptible to sunburns, so I had to cover up mom-style with a bunch of cover-ups and hats, but i still got to see this everyday:

Here are a few more pictures, all courtesy of my mom and my sister because I am a horrible millennial when it comes to documenting my every-waking moment on my iphone:

With my clean scan things seem to finally be falling into place. A big shout out to everyone who has supported me through this whole ordeal -- especially my mom, dad, and sister and the Meslows! Each and every one of you are awesome humans and I am so, so grateful.

There's no doubt about it that #hodgefreeisthewaytobe. I will wrap things up the way they started on this final note:

One month chemoversary!

It's been one month and one day since my last treatment of ABVD chemotherapy. Time flies when you're not having chemo!

While I've had a few 'hiccups' (I'll get to those later), all and all it's been a pretty great month. Here are some updates:

Overall health
I've been feeling great...as in pre-treatment great! While some people are horribly sick at the time of diagnosis, my only symptom was my swollen lymph node above my collarbone. Other than that I felt totally healthy, which is how I feel now. I have read about many people who undergo ABVD who say that it takes months -- if not years -- to feel normal again. I consider myself very lucky that it took me just a week or so after treatment to feel normal. Of course, Hodgkin's taught me that feeling healthy doesn't necessarily mean you are healthy, but overall I think this is a pretty good sign that my body is strong and I have, indeed, defeated The Hodge.

Fitness
Growing up, I was always pretty sporty, playing a bunch of organized sports at various levels of competitiveness. In college and beyond, I still liked to stay active but I never had the discipline to go the extra mile (pun intended!) without the structure of organized sports. That said, I would like to do some sort of physical challenge this year. I will hopefully be going on a kayaking trip with First Descents this summer (they are an amazing organization -- check them out!), which is something I've been excited about since I started treatment. Additionally, I am considering the Five Boro Bike Tour, which is a bike ride through each of the New York City boroughs (it's about time I get to the Bronx!) and/or doing some sort of triathlon.

Thankfully, I was able to stay pretty active during chemo. I wasn't doing Crossfit or anything, but I did continue to do yoga/cardio classes. Since I've been done with chemo, I've tried pushing myself more in each class in preparation for whatever the Fun Sporty Adventure of 2015 may be.

Hair
The hair gods were pretty merciful to me during chemo. While I lost most of the hair on my head, I kept both my eyebrows and eyelashes. They aren't exactly what they were pre-chemo, though. They did shed a bit, but mostly they bleached. However, with regular mascara and eyebrow mascara (which is a thing -- go figure), they look pretty much normal. Unfortunately, they still have not changed back to their normal color, so I'm starting to get a little impatient. Beggars can't be choosers, but sometimes all a girl wants is to have some Cara Delevingne eyebrows!

As for hair on my head, I'm happy to report that it's growing -- faster than I expected, but slower than I want. Right now it's almost to a short pixie, though there are still a few patches that are thinner than others. Oftentimes post-chemo hair grows in a different color or texture for the first few months. Mine is the same color, but the texture is a little different. Think what a mild to moderate electrocution would do to your hair, and that's how mine feels. I've been trying to limit how often I wash it, and I've been conditioning it a ton with coconut oil. I like to think that is helping, but right now it's still pretty...electric. I still wear my wig most of the time when I go out, though I have been starting to rock my 'deliberately short pixie' (that's what I'm calling it, rather than my 'electric post-chemo hair') at the gym, but that's only because I get sweaty and I'm sick of wearing scarves.

Needless to say this is a BIG improvement from my awful male pattern baldness days. I do have a few pictures that I took to document the terror, but those bad boys will never see the light of the internet so I guess I'll just have to leave it to your imagination.

So, for the most part, all good, right? Almost. I mentioned above that I have had a few 'hiccups'. These 'hiccups' are all attributed to blood thinners -- first the dreaded Lovenox injections and now the almost as dreaded Warfarin pills. What's so bad about taking a pill, you might ask. Well, this pill comes with some strings attached: finger pricks.

My last post discussed the process behind Warfarin, and how it takes some trial and error to find the right dosage. Factors such as diet -- those who eat more Vitamin K will need a higher dosage -- and body chemistry will affect the dosage.

I started on 5 mg (1 pill) of Warfarin on February 19th. I went in twice in my first week to get my INR checked. To do this requires a finger prick where the nurse then smears your blood onto a machine that gives you the INR instantaneously. I was told that it could take 3-7 days for the Warfarin to "kick in" -- meaning, to have an impact on INR levels. Until I reached my ideal 2-3 range, I would have to continue with the Lovenox shot. For those of you keeping track, that means 2 jabs of Lovenox and a finger prick. What a scam!

Well, after a week, my INR levels stayed the same -- 0.9. As I mentioned in the earlier post, this is a normal level for normal people not on Warfarin. My goal was to get to 2-3. So, this required playing with my dosage. We tried a couple days at 10 mg (2 pills), which brought me up to a whooping 1.1! Then we tried a couple days at 15 mg (3 pills), which brought me to 1.9. So close! At this point, my doctor advised me to reduce my dosage to 12.5 mg (2.5 pills) and get re-tested after the weekend. Come Monday, my INR level was 2.1. Bingo!

You would think that would be it, right? That 12.5 mg was the secret dosage? Well, three days later -- yesterday -- my INR was at 2.9, which is the high end of what they want. Let's just say my blood definitely seemed thinner at that point -- I bled through two different bandages after my finger prick. My new plan is to switch of my dosage from 10 mg to 12.5 mg every other day until my next test on Monday. Hopefully by then things will be stable so I can stop my tri-weekly finger prick.

While it's been nice to not have to do the twice a day Lovenox, these finger pricks are a big pain in the you-know-what. Luckily, I only work part-time and have a flexible schedule; I don't know how people who work full-time are able to accommodate all of those appointments! When all is said and done, though, I'd much rather go in for a finger prick than get chemotherapy, so I guess it's all about perspective.

So, until my scan on March 18th, I think things will be pretty quiet. And sunny. And warm. And relaxing....because next week I am going to the Dominican Republic! My family and I are going to celebrate the end of chemo and my mom's upcoming "milestone" birthday (I don't think she would approve of me telling the world her age). Ciao, winter!

Peace out, Lovenox

I hate to sound like a broken record, but I really, really hate Lovenox. For those of you new to my little corner of the internet, Lovenox is a blood thinning injection that I have had to do twice a day for the last three months following a pulmonary embolism which was picked up on my interim PET scan. The injections themselves were often painful, but what has been the most difficult is making the lifestyle adjustment to make sure that I do both injections within twelve hours of each other (or as close to that as possible). Nothing kills the conversation than saying "Brb, my mom/dad/boyfriend have to give me a shot in my stomach, because I'm too much of a baby to do it myself. But hold that thought!"

So, it is with GREAT pleasure to announce that I'm almost done with Lovenox! That's right, folks, if all goes to plan, my last day should be either February 23rd or February 24th!

Before you get too excited, though, there's a catch: I'm still going to be on blood thinners for another three months. However, rather than doing the Lovenox injections, I am starting Warfarin, which is a once-a-day pill.

A PILL!!!!

AS IN NO MORE SHOTS!!!

Even though Warfarin is no walk in the park -- I'll explain more about what the next few months will entail in a moment -- I think just about anything is better than a twice a day injection in the stomach. Finishing chemo was a big milestone for me; in a weird way, this is almost a bigger milestone since these bad boys effected my daily life more than a bi-weekly chemo session with limited side effects (for the most part).

Now, on to the logistics of Warfarin. I took my first pill today, even though I still have a few days left of Lovenox. This is because it can take up to seven days for Warfarin to start doing its job. I have a lab appointment on Monday to see how things are working where they will test my blood for its INR levels. A normal person who is not on anticoagulation should have an INR at around 1. The target INR for someone on Warfarin is somewhere between 2.0 and 4.0. As of today, mine is at 0.97. I'm a little confused by this since I am on anticoagulants so you would think mine would be higher, right? I am not concerned, because before we even got the reading my doctor told me it would take a few days to get to this ideal rate. However, a nagging voice in my head keeps saying if I don't even have "thin blood" after 3 months of injections then WHAT WAS THE POINT OF THE INJECTIONS?!! Alas! I'm sure there is a good medical explanation for this that I just don't know yet. Dr. Jen doesn't know everything, after all.

I'll have to get used to this INR test, since I will likely being doing it once a week for the next month or so to help figure out my exact dosage. This is because INR levels can fluctuate (and when they fluctuate, the dosage must also be adjusted) depending on diet -- specifically Vitamin K intake. Vitamin K? Random, right?

Well, not so random: our bodies use Vitamin K to make blood clotting proteins.
Warfarin works by working against Vitamin K. Luckily, this doesn't mean I have to avoid Vitamin K all together while on Warfarin -- thank god, because I love green smoothies and yuppie salads -- it just means that I have to be very consistent with how much I consume so it corresponds properly with the Warfarin dosage. Translation: if you aren't a fan of green leafy vegetables and eat a diet low in Vitamin K, you wouldn't want to eat a giant spinach salad because that would drastically alter your INR rate. But if you're used to eating that giant spinach salad, it's okay to eat it every day since your body -- and your Warfarin dosage -- are used to it.

Other than that, it's been a relatively uneventful few weeks on the health front. Aside from the usual vein pain directly following chemo and a little more fatigue than usual, I feel great! Today was officially the longest my body has gone without chemo for 6 months, which is a pretty awesome feeling.

I'm also happy to report that my hair has begun to grow back...aka my male pattern baldness is receding (get it? clever, huh?). The texture is a little...off...I sort of look like I got electrocuted or something, but after 6 months of being pretty much bald, any and all hair is welcome! I've even sported just a headband at my yoga classes and let the rest of my thin (but there!) hair see the world (you're welcome, yogis). It is a welcome relief from scarves which just scream CANCER. Luckily, I never lost my eyelashes and eyebrows; they thinned a bit and also lightened in color, but with a little makeup they look pretty much normal.

Speaking of normal, or healthy, I had an interesting eye appointment last week. I have a light distance prescription and decided to go in to see if anything has changed, since driving, which I never did in NYC, has seemed to highlight some of my deficiencies on the visual front. In addition to checking my vision capabilities, the optometrist also did some other tests to determine my overall eye health.

"Everything looks good! You've got very healthy eyes!" he said.

"What all did you test for you?" I asked anxiously.

He rattled off a list of things I had never heard of, and finished up by saying, "So, in a nutshell you really don't need to worry. You're young and very healthy!"

It was a really surreal feeling to be told "you're young and healthy" after who knows how long -- there really isn't a way to know how long I had The Hodge before being diagnosed -- I was not healthy. Part of me wanted to bow at his feet and say thank you, thank you, thank you, but I thought that might be a little weird. So instead I just said "thanks" and was on my merry way.

After 26 years of being told I was healthy by doctors, and then a six months stint of being a cancer patient, it sure feels good to go back to normal -- though I'm still holding my breath that my March 18th PET scan will come back clean before I get too comfortable being "young and healthy".

Chemo #12: The light at the end of the tunnel

After 6 cycles (aka 12 actual infusions), I can finally say I'm done -- forever -- with ABVD!

This doesn't mean I'm officially in the clear with beating Hodgkin's -- I still have to wait for my scan on March 18, which will show if I'm officially in remission. If, on the off chance, it still shows some metabolic activity -- which my doctor thinks is highly unlikely, given my clean interim scan after 2 cycles of ABVD -- I would have a whole new, likely more intense, treatment regimen. BUT this would not be ABVD. So, even though I don't know if I'm officially done with Hodgkin's, it's good to know that I can speak with absolute certainty -- which is something you can rarely do in Cancer World -- that I'm done with ABVD for good, and that alone is enough to celebrate.

#BritBrit4lyfe

Now, on to the nitty gritty. My last infusion went pretty smoothly. We stayed away from my right arm, following the weird rash/irritation that happened after chemo #10. My left arm, though, wasn't perfect, and the first vein we tried on the top of my forearm didn't work, so we had to move to my hand (you might remember my weird, semi-irrational fear of the hand vein). Not the most pleasant IV experience, but not too bad either.

The occasional vein dramz aside, I can say with 100% confidence that I'm glad I didn't get a port. It seems like ports are more common than not, so for anyone who is recently diagnosed and happens to read this, do not feel like a port is necessary to complete ABVD. If you are extremely squeamish with needles, it's probably a smart thing to do, but if you can handle a few pokes here and there I think it's best to keep things as simple as possible and just go the IV route. In the grand scheme of things, you only have to do it 12 times. Each time (for me, at least) took no more than a minute of maneuvering to get the right spot. So really we're talking about 12 minutes of discomfort -- which is shorter than a surgery to get a port installed. Obviously this is a personal decision, but I feel it's important to add my two cents, since it seems like ports are almost a unanimous consensus among Hodgkin's patients.

The rest of chemo went by pretty smoothly, and we finished in about two and half hours -- around noon. The usual suspects, Scott and my mom, accompanied me, along with Adriana (aka Mote -- long story where that nickname came from), who I've known since we were in second grade. Jenny and Cathy also stopped by for a bit, which definitely helped pass the time!

After chemo, I normally go home, eat lunch, and veg out, but we had to stick around a little longer because I scheduled a last minute appointment with Dr. Peterson at 2:30 pm to talk radiation. To kill some time, we went out for lunch, where I got some delicious Pho (which is actually pronounced 'Fuh'. Go figure!). At the end of the meal, I got a pretty relevant fortune cookie:

Today is a lucky day for those who remain cheerful and optimistic. 

While I'm definitely pretty neurotic about my health, deep down I do feel optimistic that I'm done with this whole saga. Sure, a positive attitude won't help me get a clean scan, but it won't hurt, either. This next month of limbo will definitely be challenging for someone who wants to know everything, right away, right now. But I'm trying to look at it with a glass half full attitude. Given 85% of people diagnosed with Hodgkin's are cured with the first line therapy AND I had a clean scan AND my fortune cookie basically told me things will be fine, I have more reasons than not to believe things will work out.

So, as you can see I walked into my appointment with Dr. Peterson feeling pretty good, and I left feeling even better. He explained more about radiation, and which cases benefit from it and it which don't. It sounds pretty counter-intuitive, but radiation is only an option for Hodgkin's patients who are stage 1 or stage 2. More advanced disease (stage 3 or 4) is strictly given chemotherapy. Now, it's sort of a toss up which patients at stage 1 or 2 get radiation. It is more common for those who have "bulky" tumors (those over 10 cm in size), but many patients without bulky tumors also get radiation. This is where there are a few trains of thought. The two most common treatment options for patients at stage 2, without bulky tumors, are as follows:

1. 4 cycles of AVBD + radiation
2. 6 cycles of ABVD and no radiation

Unfortunately, as I mentioned in my recent post on radiation, there isn't really a consensus among oncologists which is the better option. Dr. Peterson is very much on board with option 2 -- mainly because an additional 2 cycles of chemotherapy are much less toxic in the long run than radiation. Since I had a clean interim PET scan, which meant I was very responsive to chemotherapy, radiation would be sort of an overkill, needlessly exposing me to more risks. It's clear that Dr. Peterson is more of a marathon runner than a sprinter, repeatedly talking about his goal to make sure that his patients long term quality of life is preserved. 

What really made me feel more comfortable, though, was his explanation that I was being treated the same way as someone with stage 3 or 4 Hodgkins, where the standard treatment is 6 cycles of ABVD (some with advanced stages are given an alternative chemotherapy regimen of BEACOPP, but that is a whole other can of worms that I'm too lazy to elaborate on -- lucky you!). Basically, I was given a little bit more chemo than I probably needed to ensure that all the little hodgers were obliterated, in place of radiation, which is more harmful in the long run. If 6 cycles of ABVD, on its own, is enough to get patients at stage 3 or 4 in remission, it seems like it's more than enough to get me, at stage 2, there.

I mentioned earlier that, in addition to talking to Dr. Peterson, I also wanted to get a second opinion, just to be sure. At this point, I feel very confident in Dr. Peterson's explanation of things and no longer think a second opinion will be necessary. While it's good to have all options on the table, my case seems pretty black and white as far as radiation goes, and I feel very confident in my treatment plan (which says a lot, since I am normally full of doubt or uncertainty when it comes to medical issues).

So, I walked out of the Masonic Cancer Center feeling pretty good about a lot of things: that I was done with ABVD, that radiation would not be necessary in my case, and that I would probably have a good scan in the next month. 

The last development that really got me on the Happy Train was learning that yesterday, February 4, was World Cancer Day, which, according to their website, exists to "take a positive and proactive approach to the fight against cancer, highlighting that solutions do exist across the continuum of cancer, and that they are within our reach." Cancer is no longer the death sentence it once was, and I truly believe that in a few decades (or less!), we will have come even further with identifying more of the causes of cancer, which will help in prevention efforts, and, more importantly, new, less toxic, and more effective cures.

I'm still in the process of debriefing myself on this whole crazy experience, and will likely have more thoughts to share in the coming weeks. But for now, I want to say a HUGE thank you to each and every one of you for all your support and encouragement. It means so much to me, and I am so incredibly touched. Namaste. :)

Doing my part to defend modern medicine

Image courtesy of Refinery29

Between the controversy of the Connecticut Supreme Court mandating Cassandra C. to receive chemo to treat Hodgkin's lymphoma to the rise of the anti-vaccine movement, it's been a rough few months for the medical establishment (and science as a whole).

In an effort to do my part to convince the world that modern medicine is a godsend, I recently published an expansion of my blog Why I will no longer call chemo "poison", in Refinery29. Click here to read the article.

Aside from sharing a moral compass (deep down, Jesse is a good guy -- unlike Walter, who was always had a darkness within him just waiting for an excuse to let it loose), Jesse Pinkman and I probably don't agree about much. But there is one thing we do agree on...

To radiate or not to radiate...that is the question

Hi strangers!

It's been a little while since my last update. Here's what's been going on the last few weeks:

Two days after chemo #10, I had some major vein pain near where the IV was administrated. This has happened from time to time throughout chemo, but never as bad as this time. Adding to the misery was a huge oval-shaped rash that developed that was about 5 inches long and 3 inches wide. I called Masonic right away, worried that this could be tissue damage as a result of Adriamycin. They said this would be unlikely, as tissue damage would happen when the drugs were actually being administered. Phew! The most likely culprit was either some sort of infection (which was quickly ruled out, as I did not have a fever) or just plain ole vein irritation. Bingo!

In addition to the rash, which lasted two more days, I developed even more bruising and a few welt-like things on my skin. The pain was also very intense for another week. Needless to say this was my worst vein experience yet and I have officially declared my right arm OFF limits for the rest of chemo.

Some more updates:

• I had another pulmonary function test to make sure the Bleomycin hasn't totally warped my lungs. My lovely friend Heather who was visiting from DC accompanied me to the test and was a great support as I freaked out about how much I hated this test. I'm happy to report things went well and my lungs are doing just fine. My lungs were at 95% at my first PFT. My second test showed them at 88%, and my final one stayed at 88%. For comparison, anything above 80% is considered healthy. So, I'm doing okay on that front!
• On January 21, I received chemo #11, which was a breeze in comparison to the last round. The nurse made sure to use my left arm this time, thank god. A quick IV in and we were good to go (and no issues afterward)! My sister Rachel accompanied me for this round of chemo, and boy, is there something to be said for the power of genetics! The Kalaidis family has a very keen sense of smell (it must be our big noses), and right away she complained about the sterile smell of the chemo ward. As I've mentioned before, I haven't really gotten full on nauseated, but I do get queasy/grossed out with the particular smell of antiseptics and saline. Hypochondria also runs in the family. After my oncologist checked my neck/collarbone area to make sure they were free of nodes (they were), Rachel immediately began her own self-examination and almost ventured so far as to ask for her own exam. You know, just to be safe and all.

All in all, chemo #11 was one of the easiest treatments I've had so far. They say the effects of chemo are cumulative, but that hasn't really been my experience. Instead, I've had a few random not-so-great chemos with not-so-great side effects that have been scattered throughout. I guess I can't complain if I'm one chemo away from being done with treatment and still feeling pretty normal!

Before I leave you on that happy, optimistic note, I have one other area I want to discuss: radiation. At my first meeting before I even began chemo, Dr. Peterson laid out my treatment plan: 6 months of ABVD and likely no radiation. He stressed that this was not set in stone -- never say never in the world of medicine -- but given the characteristics of my cancer (smaller tumors spread out around my chest and neck, rather than one or two bulky tumors), Dr. Peterson felt that radiation would be of little benefit to me and could bring a lot of adverse side effects, such as thyroid malfunction, lung/heart issues, and secondary cancers. 

At the time, I was happy to hear this. Yay, less treatment! Not only would I be done sooner, I'd avoid even more potential complications from treatment! 

Well, a study I came across last week has made me question my opposition to radiation. The study found that the most recent trend of treating early-stage Hodgkin's (stage 1 or 2) with chemotherapy only, rather than chemo + radiation (which used to be the norm) has actually had an adverse effect on survival rates. For instance, Hodgkin's patients at 2A (what I was staged as) either receive 4 cycles of ABVD + radiation or 6 cycles of ABVD and no radiation. In the last decade or so, more and more oncologist have recommended option two (which also so happens to be my treatment plan). Yet the survival rate for chemo + radiation is 84.4%, compared with 76.4% for those who received chemo only. 

While this isn't a huge difference, it's significant enough to make me think I might want to get a second opinion, just to be safe. I completely trust Dr. Peterson and think I will probably still stick to the game plan and avoid radiation, but just having the peace of mind of another expert's opinion will make me feel better about everything, though from what I've read over on the Hodgkin's lymphoma message board, oftentimes oncologists put the ball in the patients' court when it comes to radiation, which I guess is both a good thing and a bad thing (good, because freedom of choice! bad, because freedom of choice!).

There have been a few times in my life where I've had to make a big decision where I've wished I was born in North Korea so I wouldn't have to make my own decisions, ergo it wouldn't be my fault if I chose the wrong one. Let's just say Pyongyang is looking pretty good right now...

Chemo #10: Why I will no longer call chemo "poison"

Happy 2015, everyone!

From delicious meals to goofy holiday movies to great conversations with family and friends, I had a wonderful wrap up to 2014. While it would have been nice to wrap up all things Hodge in 2014, I guess I can't really complain since I have LESS THAN A MONTH LEFT OF CHEMO!! That's right, folks, if all goes to plan, I have just two treatments left -- January 21st and February 4th -- and then a post-treatment scan 4-6 weeks later, and then I'm (hopefully!) donezo!

I had my most recent treatment, chemo #10, yesterday, and it went much smoother than last time -- aka we got a good vein right away, and it stayed a good vein all the way through! My nurse was Andrea, who I've had a few times now and who is a pro at finding veins. In fact, Andrea was the one who rescued me way back during chemo #2 when I had my first vein mishap. In a nutshell: go Andrea!

I also had quite the posse cheering me on. In addition to Scott, who is a regular at this point, Anna and Abram were in town from Washington, DC, and generously spent some of their hard earned winter break from Georgetown Law in the chemo ward with me. Ashley and Brittney also stopped by to hang out, and we all had a blast (or, as much of a "blast" as one can have in the chemo ward). Since the majority of patients I see in infusion are well into their golden years, I think it's probably safe to say that this #millennialinvasion was the largest number of people under-30 to ever be under their roof at the same time. As usual, the staff at the Masonic Cancer Clinic were wonderful and accommodating, finding chairs for everyone and letting us shamelessly raid the snack cabinet. Oh, and the older gentleman next to us didn't even seem to mind our probably louder/more inappropriate- than-what-is-considered-polite conversations; he snored through it all (though how someone can sleep during infusion is beyond me!). So thanks, friends, for your wonderful company and support!

While treatment went well, I felt very fatigued afterward and vegged out the rest of the day. I also felt more nauseated than usual, which sadly prevented me from eating Jenny Meslow's world-famous enchiladas (Jenny always makes my family a wonderful post-chemo meal), and instead I got stuck with an uninspiring bowl of chicken noodle soup. Luckily, though, after dinner I think I found the nausea culprit: the gauze wrap they use to cover IV wounds! What had trigged nausea in the past was the thought of the sterile smell of alcohol rubs or the sodium chloride. Well, guess what? That is exactly the smell of this gauze wrap! Once I took it off and showered, the nausea miraculously went away! So, future cancer warriors: nausea is most often caused by the chemo drugs themselves, but it can also be caused by this funky smelling stuff!

Alright, those were the highlights from Chemo #10. Now, on to a more philosophical topic. You're probably wondering about the headline, "Why I will no longer call chemo "poison". In previous posts, I had joked around about going into infusion to "get poisoned". While I wrote this as a joke/to be dramatic, this is not entirely factually incorrect -- chemotherapy damages both cancer cells and healthy cells and -- for most people, at least -- causes many unpleasant side-effects, many of which I have detailed in my blog. While it is definitely not an ideal way to treat cancer, right now it's the most effective treatment we've got.

So, having said this, I am incredibly saddened to read about a 17 year old girl named Cassandra in Connecticut who was recently diagnosed with Hodgkin's Lymphoma and is trying to refuse treatment because, in her mind, it is "poison". Without treatment, Hodgkins is fatal. Luckily, though, it is one of the most treatable cancers out there, and with standard chemotherapy treatment, the 5-year survival rate for patients is 90%. Obviously, most Hodgkins patients live much longer than that -- as I mentioned in my last post, once a patient hits the 2 year mark the chances for relapse go way down. At the 5 year mark, a relapse it is extremely unlikely, to the point that most doctors feel comfortable declaring the patient as "cured".

Since Cassandra is 17 and a minor, her parents are the ones legally responsible for her medical care. Since they fully support Cassandra's decision to forego treatment, the Connecticut Department of Children and Families have intervened and removed Cassandra from her parents' stewardship, accusing the them of neglect, and put her into temporary state custody. She is currently being held in the hospital and receiving treatment against her wishes.

Obviously, this is a very complicated situation, both legally and morally. In general, I believe that adults have the choice to pursue or refuse treatment as they see fit. And while it makes me extremely uncomfortable, I even believe that physician-assisted suicide should be legal on a federal level in the case of a painful terminal illness (this belief was reinforced after the Brittany Maynard saga last year).

But this case is different. For one, Cassandra is still a minor -- a painfully ill-informed one at that. And two, as they say in The Hunger Games, the odds of a full recovery are ever in her favor, so I think it's fair to say that the decision to refuse treatment is not only stupid; it's also extremely irrational. If Cassandra was diagnosed with a terminal illness and told she had only months to live, I might feel differently, but the facts are that she will definitely die without treatment and most likely survive with treatment.

I think in a few of decades we will look back at chemotherapy as a barbaric form of treatment. I mean, with chemotherapy you have to get sicker in order to get better. That sounds fun, said no person ever! Even now, there are many promising studies demonstrating the efficacy of immunotherapy and other non-chemotherapy approaches to treatment. But these studies are still in their infancy, and it will likely be at least a few years before doctors have an equally effective alternative to treating cancer.

So, since chemotherapy is the most effective way to treat cancer and is directly responsible for saving thousands of lives each year, I have now declared a moratorium on calling it "poison", even if I am just kidding around. What it really is is a crucial, life-saving medicine that I am thankful to be receiving.

I'll wrap up by summarizing a conversation my mom had with my great uncle shortly after I was diagnosed last summer. My great uncle is a dermatologist, and has been practicing medicine since the 1960s. He told her that when he was going through medical school -- and for the first decade he was in practice -- Hodgkin's was basically a death sentence. It wasn't until the 1970s and the arrival of ABVD that it was able to become one of the most curable cancers out there. Just like that -- thanks entirely to innovations in modern medicine -- thousands of lives have been saved each year.

While I am not in the clear yet, I am going to say a premature 'thank you' to the chemo drugs for doing their job and killing The Hodge. Adriamycin, Bleomycin, Vinblastine, and Dacarbizine, I salut you (even if you did make me lose my hair)!