The Relapse Scare Is Over (For Now)

Hello, sportsfans! It's been awhile, and I'm afraid I left you on quite the cliff-hanger (though, as with most things in Hodgeland, no news is good news!). The relapse scare that I wrote about back in April was just that - a scare. This means that I have officially been in remission for close to three years!

Let's recap a bit, shall we? In my last post way back in April, I left you hanging about the results of my biopsy. My surgery was on a Tuesday, and, thankfully, I got the results back on Friday, which was a much faster turnaround than my first biopsy (I waited for two full weeks for those results).

I also appreciated that my oncologist called me with the news, which he said he would do regardless of the result. Dr. Kaminetzky is a very thorough -- and technical -- oncologist. He goes into a lot of detail with treatment plans, and he expects the patients to keep up. Some people might find this off-putting, but I like the fact that he takes off the kids' gloves and treats his patients like grown ass adults. So, when I told him I wanted the results by phone, he was totally okay with that, which was a tremendous relief, because last time I had to go in for a follow up appointment to get the bad news. I understand that doctors often want to speak to patients in person regarding a diagnosis to make sure they convey all of the necessary information, but from a patient's perspective (well, at least this patient's perspective), it's much better to get bad news in the comfort of your own home -- where you can ugly cry to your heart's content -- than in a cold, sterile office where strangers try to awkwardly comfort you.

Man, no one can ugly-cry like Dawson Leery

Needless to say, I was incredibly relieved...that is, until September, when I felt a few other nodes on the same side (these were all on the right side, whereas my original site of disease was on my left superclavicular area). I just so happened to find these as I was about to move across the country (I live in Los Angeles now - more about that later!), so unfortunately I wasn't able to see Dr. K before jetting off to California.

Luckily, there is nothing to take your mind of impending doom (aka a relapse) than moving across the country. I've done plenty of moves in my life and lived in some great places, but man - there is a big difference between moving in your late twenties versus early twenties. Let's suffice it to say that it was quite an ordeal, but between my boyfriend and our families, we successfully moved our lives from Brooklyn to LA, and I barely even thought about those pesky little lymph nodes. In case you ever find yourself in a similar situation -- moving cross-country, not getting cancer -- Scott wrote a great article over at GQ about our harrowing journey that has a bunch of great tips to avoid getting scammed.

Okay, so we're settling into our new life in California and all the sudden Anxiety Gurl rears her ugly little head, reminding me OH YEAH, YOU HAVE SOME SWOLLEN ASS LYMPH NODES IN YOUR NECK. Thankfully, they seemed to be stable and were all still below 1 cm in diameter (once a lymph node exceeds 1 cm in diameter, it is considered to be abnormal - not necessarily cancerous, but abnormal), so I put off scheduling an appointment with a new oncologist in LA, because I was lazy and didn't feel like opening that can of worms (seriously, I could write a whole blog post about how MIND-NUMBINGLY COMPLICATED it is to switch oncologists).

Anyway, the ole nodes were stable -- that is, until the first round of wildfires struck California in early October. The fires were in Orange County -- about a good hour or so from where I live -- but the wind pushed the smoke all the way up to my neighborhood. Now, Southern California is not exactly known for its pristine air quality, but it has come a long way from the grimy 1970s, when the air quality exceeded healthy levels a whopping 200 days per year. So, when I suddenly woke up and couldn't see the hills or LA skyline, I knew something was up.

It didn't take long for my lungs to also realize something was going on. Shortly after the fires broke out, I developed a cough, which quickly was accompanied by blackish brown phlegm. That's right, I felt like I had smoked like a chimney for decades in just a matter of a few days (sorry if that was a little TMI, but this is a cancer blog, so that's sort of the point, right?). It didn't take long for those cute little baby lymph nodes to start swelling. At the height of this second relapse scare, I had about 7 or 8 lymph nodes -- most small, but some approaching 1 cm -- all along the right side of my neck, including close to the superclavicular area, though thankfully about a cm or so above my collarbone.

Commence freak out mode.

Remember how I mentioned how hard it is to get a new oncologist? Well, even with a ton of swollen lymph nodes and a history of Hodgkin's Lymphoma, I still had to wait close to a month to see a new oncologist at the USC Keck School (seriously, what is this, Canada?! I kid - after the last year, I wish this was Canada...) not to mention do a TON of correspondence between the U of MN, NYU, and USC. Seriously, unless it can be avoided, spare yourself a ton of stress and do not change oncologists!

Thankfully, by the time I was able to see my new oncologist, most of the nodes had calmed down and were shrinking. However, I still had multiple palpable nodes, including the one that was dangerously close to my collarbone. The new oncologist felt them and said that he wasn't terrible concerned, especially since my bloodwork was normal, but that we should do a PET/CT just to be sure. Now, normally I am all about taking every possible precaution when it comes to medical stuff, but I immediately pushed back on the scans. Our ensuing conversation then went something like this:

"I've already done a bunch of scans -- most recently in June in NYC -- and I'm concerned about radiation. Do I really need to do another one if everything feels within the realm of normal?"

"Okay, we don't have to do a scan."

"Well...should I do something else? How about an ultrasound?"

"Sure, we can do an ultrasound."

What is this - Choose Your Own Adventure: Oncology Edition?!

From a patient's perspective, there are few things more frustrating -- and unsettling -- than a doctor who lacks confidence. It's one thing to explain all the options, and let a patient decide which option he or she would like to pursue, but it's quite another to suggest something and then easily backtrack when the patient pushes back. A PET/CT isn't exactly a routine thing. For one, it's not an insignificant amount of radiation exposure, not to mention it's incredibly expensive, which is why I was completely taken back that this was his first thought. It would have been one thing if when I pushed back he continued to make his case about this being the right course of action, but the fact that he retreated so easily and was all loosey-goosey about how to proceed wasn't exactly reassuring. 

So, why push for an ultrasound? The scientific answer is A). there is no radiation exposure and B) we did that during my last relapse scare a few months earlier, and I trusted my previous oncologists' judgment more than this new guy's! 

The results of this most recent ultrasound were reassuring: the largest node was below 1 cm and it looked normal. While it's important to stress that an ultrasound cannot diagnose a malignant node, often malignant nodes do look distinct from a normal reactive lymph nodes, so ultrasounds can be a good early stage tool to help determine if further tests are appropriate.

So, what's the big take away here? Be your own advocate, and research the shit out of your condition. Doctors are smart, but so are you. It's your body, so don't ever feel pressured into doing anything without understanding all the side-effects.

Thankfully, about two and a half months later, most of these nodes have completely resolved. I still feel a few very small ones along the line of my neck, but they seem to be stable, so I'm trying not to worry. It's strange, because I've spent the last three years of my life obsessively feeling my neck and collarbone area. However, after these last two traumatizing scares, I've really started to back away from the constant checking. I wish I could say that I was doing this for healthy reasons -- you know, not being OCD -- but truthfully, I'm avoiding feeling around because I'm scared of what I might discover. Don't get me wrong, I still check about once a week or so (who am I kidding - I'm not a "chill" cool girl), but I'm not as thorough as I had previously been. I figure if there is something I need to be concerned about, I will feel it, but I don't need to go fishing around for anything and work myself up into a frenzy like I'd done before. 

So, either this is progress or denial or being "totally California", but right now that feels better than being constantly worried about relapsing.

After all, Don Draper always feels better in Cali!

Anyway, thanks for reading - Here's to hoping we all have a healthy, happy, and cancer-free 2018!

Life in Limbo...

Hey, internet! It's been awhile - over a year, to be exact.The last year has been very busy, which is why I’ve been MIA from this blog. I’m continuing to work full-time and do grad school on the side, which has been hectic but also rewarding. After taking about a year off to battle the hodge, it’s felt good to be back on track. In the 2+ years since I've been in remission, I've been feeling great. Really great. AWESOMELY GREAT! LOOK, I EVEN HAVE HAIR!

Hair growth, 2 years post ABVD. This is it "straightened" -- or at least as straight as it will get. IT'S STILL SO CURLY!

LIFE IS WONDERFUL!!!!!

!!!!!!

Okay, let's cut to the chase: I'm a bubbly person, but not that bubbly. Unfortunately, I'm checking in because I'm in the midst of a horrible relapse scare that has turned out to be one of the worst months of my life. Let's begin where it all started: my 2 year scan.

My 2 year CT was originally scheduled for March 16,  2017, but was bumped back to March 21st since I was sick with a bad cold the first week of March (doctors generally want to avoid scanning you when you're sick because it could show enlarged lymph nodes that are reacting from being sick, not from having cancer). So, I show up to my appointment feeling pretty confident that I officially hit the two year mark, which is a big deal in Hodgeland, as most relapses occur within the first few 2 years of treatment. I chugged my Barium "smoothie" like a champ (seriously, medical community, can we stop calling that sludge a smoothie?), gave pep talks to all of the other nervous patients in the waiting area ("Yeah, cancer sucks, but after a few rough months, pretty soon you'll be all healthy and chipper like me!"), and soldiered through numerous botched attempts at getting an IV in my rock hard, chemoed out veins. I was about to get the all clear yet again - nothing could stop me from continuing to be a Cancer Rockstar!!

After a very uneventful post-scan check up with my new oncologist at NYU (I was previously treated at the University of Minnesota, but my insurance changed, so I had to find a local oncologist), where I had normal bloodwork (with hodgkin’s, the ESR rate is often elevated – which happened to me when I was first diagnosed) and no palpable nodes, he told me he would call me tomorrow with the scan results, which he felt confident would show no evidence of disease. I left the office feeling great, and Scott and I celebrated being 2 years cancer free by eating a delicious Unami Burger (seriously, if you ever go to NYC, try this place).

After our blissful lunch, I continued my hodge-free celebration by binging through a few episodes of Big Little Lies and then taking the pup out for a stroll. It was one of those wondrous 60 degree days after a few weeks of dreary March weather, so the whole neighborhood was at the park, and everyone was chipper and merry (or, as chipper and merry as folks get in New York City). While Mads was playing with some new pup friends, I got a call from Dr. Kaminetzky, my oncologist.

“Unfortunately, the CT scan showed some enlarged lymph nodes in your neck. These are deep in your tissues, which is why we didn’t feel them during your exam.”

Bliss Gurl instantly morphed into Anxiety Gurl. After two years, I feared the hodge was back.

Dr. K explained that we would re-scan next month to see if the lymph nodes went down. He believed that these were likely a result of having recently been sick and did not think there was any evidence of a relapse. He advised me to call him if I noticed any new lymph nodes pop up before my scan.

I hung up the phone and turned to Mads, who was still wrestling with one of his buddies without a care in the world. Lucky little twerp.

I began to feel anxious, but resolved to talk myself down.

Okay, Jen, get a grip. Dr. Kaminetzky is not worried. He is an oncologist. You should trust his judgment, and not immediately assume the worst. Don’t be so Type A about this! So your scan wasn’t perfect. You shouldn’t have expected it to be perfect since you were just sick. Humans get sick! Getting sick does not equal the Hodge. Plus, your blood work was clean and you have no other symptoms. Not to mention the hodge often comes back in the original site of disease (in my case, this would be the supraclavicular lymph node and the lymph nodes in my chest). The new swollen nodes are in your neck, therefore, they most likely just reactive from your recent illness. So, chill out! You’ll go back next month and get that prefect scan and you can officially declare yourself as having made it to that crucial 2 year mark. YOU GO GIRL!

This little pep talked helped get me through the next week. However, just when I was starting to feel better and to had come to believe that the scan was a result of having recently been sick – cold sick, not cancer sick – I felt something ominous on the side of my neck, about an inch an a half below my ear.

It was a lump. A large, firm, and fixed lump Large, firm, and fixed lumps are not good.

Fuck.

It was about 9 pm when I felt the lump, so there was nothing I could do about it that night, but you know the moment the clock struck 9 AM the next day I was on the phone with my oncologist’s office, explaining the situation. Thankfully, they were able to squeeze me in later that afternoon.

Dr. Kaminetzky felt the lump and said that it was indeed likely a lymph node, and that it did feel firm, but the only way we could find out for sure if it was a lymph node and not just some random pulled muscle or something else would be to do an ultrasound. He continued to stress that he did not feel like this was a relapse.

Luckily, I was also able to get in the same day for the ultrasound. I was, of course, incredibly nervous. The last time I had an ultrasound was at my initial surgery consultation for the lymph node above my collarbone 2.5 years ago. That time, the surgeon himself did the ultrasound, which confirmed the lump was a node, but which also picked up an enlarged thyroid nodule. The no-nonsense surgeon told me point blank: “You either have hodgkins lymphoma or thyroid cancer.” YIPPY, just what a gal wants to hear!

Would I get a similar diagnosis on the spot?

No, it turned out, I would not. This time, instead of a surgeon doing the ultrasound, a technician did it. All throughout the sterile room there were signs that the technician cannot discuss the findings, and that they needed to be reviewed by a radiologist. Translation: don’t bother the technicians, because they can’t answer any of your questions. Well, we all know the saying that well-behaved women rarely make history, so of course I asked the technician what she saw after the ultrasound was done.

“I’m not supposed to say, sorry,” she said.

“Can you at least tell me if it’s a lymph node?” I ask.

“Umm…well…I’m really not supposed to say anything…but yes, it does look like a swollen lymph node.”

GRRRRRRR.

Of course, she stressed that the ultrasound still needed to be reviewed by a radiologist, so I shouldn’t just to any conclusions just yet. I thanked her for letting me know and off I went.

A few hours later, Dr. Kaminetzky called with the results. It’s indeed a lymph node, and it’s abnormal. The good news was that the other enlarged lymph nodes from my CT scan the week before seem to have resolved. This one was not detected on the CT scan, so it popped up sometime in the week since I had the scan done. Some other good news was that, at 1.1 cm, it was just above the threshold for what is considered "abnormal" (generally, 1 cm is when lymph nodes start to be considered abnormal).  Last time, my infected node was 3 cm -- a significant step up. The next step would be to do a Fine Needle Biopsy (FNA) to see if there is anything abnormal going on. They scheduled me for this the following day.

Those of you that have been through the Hodge know that FNAs are not the best diagnostic tool for our particular ailment. Why is that? Well, think of it this way. With the hodge, you have a big ole swollen lymph node. Most of this lymph node is normal inflammation, but there are a few hodgey cells (they're called Reed Sternberg cells, to be exact) lurking in the depths of the lymph node. The chances of finding those few little creeps with a tiny needle is essentially like finding...well... a needle in the haystack. While I know of some people who have been indeed diagnosed this way, the majority of people who get FNAs when looking for hodgkins get a false negative (aka the biopsy comes back normal) and their diagnosis is further delayed. Last time, since my swollen node was right above my collarbone (which is not a node you want to swell -- more often than not a swollen supraclavicular node is malignant), my surgeon advised we go nuclear and remove the whole damn thing. This time, though, since the lymph node was further up on my neck they advised me to do this first, because this node wasn't quite as suspicious, and it is a quick and simple procedure done in the office. So hey, why not?!

Ladies and gents, the FNA was a breeze. Two pricks total, for two different samples on different parts of the node. Lucky me, the doctor who did my FNA just so happened to be a pathologist and analyzed the samples on the spot. The verdict: "reactive" (aka it was just normal inflammation from some sort of infection). The pathologist told me not to worry -- according to her, it looked like I just have some infection my body is trying to kick. In fact, my cells looked so good that she was planning on photographing them and putting them on a powerpoint slide to show her students. THAT'S RIGHT, MY LYMPH CELLS ARE FAMOUS!

I felt a little bit better, until I asked her which area this particular lymph node "drained". Was this from having a cold? Well...no -- and here's where thing got weird. This particular lymph node, "level 5" (see image below for the location), swells when there is a scalp infection or, my doctor suggested, maybe an infected pimple on the back of my neck. Say what? I had/have none of these things (as far as I could tell). Her response? "Sometimes lymph nodes just swell for no discernible reason". REASSURING! They prescribed me a week's worth of antibiotics to see if it would go away. If not, I'd meet with a surgeon for a consultation.

A week later, the node was still chillin', firm as ever. I met with an ENT who confirmed that it felt firm, but also said that it was still fairly small, so there was still hope this was all just a fluke. Had I been a "normal" patient -- that is, one who didn't have a history of cancer -- he would advise me to wait a few more weeks to see if it would go down. Even with my history, he still said that would be a reasonable plan if I was hesitant about getting it surgically removed. However, if I was anxious about it, we could certainly schedule a surgery.

"So, what's your anxiety level like?" he asked.

"HIGH," I respond.

"Okay, then. We'll take it out."

Slice 2.0, here I come. After all, that's the only way to get 100% certainty, right?

Those of you who've been with me from the beginning may remember that my first biopsy for the lymph node above my collarbone was super painful. Like, searing, horrendous, stretching off your skin painful. Additionally, I had a lot of nerve damage, and the area around The Slice was numb for a good year or so after. Generally, when I read around the internet about lymph node biopsies they're all rosey like "omg it's like tottttally doable! Just a little slice and you're done! tehe!". Well, that certainly wasn't my case the first time around. It was by far the worst physical part of the cancer experience (this includes chemo). I generally have a very high pain tolerance (as, I would assume, most people who've undergone treatment for cancer), but damn, that biopsy was painful.

Needless to say I was a little nervous for my appointment, and of course I had TWO FULL WEEKS to stress about it. Things had been very speedy up to this point in terms of getting appointments once my relapse scare begun, but now, for the grand finale, I had to wait 2 weeks?! You're killing me, smalls!

Finally, yesterday, I went under the knife for Slice 2.0. Thankfully, I had a morning surgery and was the first patient of the day, so I avoided any delays (last time, my surgery was scheduled for 3 pm, and, due to delays, was pushed back until 8 pm. Let me remind you that you cannot eat or drink the day of surgery. After being up for 12 hours without food and water, I was practically begging to be sliced open. If you ever find yourself having to get surgery, DO IT IN THE MORNING!).

The fact that things were on schedule was a major improvement from last time. A few minutes before Slice 2.0, my surgeon greeted Scott and me and reassured us this would be a simple procedure because of the accessibility of the lymph node, and that I should have very minimal pain afterwards. Sometimes, the swollen lymph node may be in the chest, which means they have to cut open your throat, collapse a lung, and maneuver into tiny crevices to find the node in question. Compared to that, my procedure would be a walk in the park! So, I decided to test my luck.

"So...I assume this is probably a no go, but since you said this would be a relatively quick procedure, can I go to a concert tonight?"

"What concert?" he asked.

"Aretha Franklin."

"OH, YOU ARE GOING TO THAT CONCERT!"

Surgeons have a reputation for having bad bedside manner, but I think I got me a good one this time. In fact, the last thing I remember before going under was the surgeon telling me to get some good videos of Aretha to show him at my next appointment to check out how the incision was heeling. Total mensch.

After the surgery, the surgeon talked to Scott afterwards when I was still knocked out and said that he didn't see anything from the surgery that indicated any obvious hodge evidence (apparently sometimes they can just tell right away). Overall, he said that he is hopeful it's negative, given that it was fairly small for an enlarged node. The only thing he was still worried about was that it was firm. Even with that, though, he said if he had to speculate right now he would guess its negative.

I woke up feeling sore, but not like last time, and after about an hour of recovery time, we were on our merry way. We took a power nap, and I woke up a little bit sorer, but hell no was I going to let that get in the way of seeing Aretha Franklin, so I put a scarf over my incision, and Scott and I made our way to Radio City Musical Hall to see the Queen of Soul. Was I tired? Oh yeah! Was I sore? Duh! Was I pissed off I was drinking a mocktail instead of a grown ass adult drink (this should be obvious, but just in case you were wondering, you shouldn't mix alcohol with anesthesia)? You betcha! Do I have any regrets about going to a concert less than 12 hours after surgery? Hell no!

So here I am a day after surgery, still feeling a sore, still groggy, but feeling cautiously optimistic. Hopefully, I will get the results back tomorrow. Gulp.

Until then, I'll be living it up in limbo. And by living it up, I mean eating ice cream and watching Netflix. Until next time...

Hodge free is the way to be

It's been awhile, internet! I know that we all like to say we're super busy, but the truth is...I've been super busy. Before I give you an update about just what the heck I've been up to these last few months, I want to announce some good news: I had my one-year post-treatment CT scan on March 24th (which just so happens to be my mom's birthday, talk about pressure!) and it came back (duh duh duh)... CLEAN! That's right, sports fanz, this lady has officially been in remission for a year (and three days!). But who's counting? Me! I'm counting each and every day as a victory against this awful disease.

In addition to my clean scan, I'm happy to report that my blood work was all normal -- including my pesky WBC, which had been persistently low in previous checkups. While I think I'm still technically immunocompromised, I'm a lot less immunocompromised than I was after I wrapped up my 6 month chemo cocktail. AKA BRING ON THE GERMZ!

While I was pretty certain this scan would be clean (statistically, I had about a 90% chance of staying in remission), I was still incredibly nervous, as I'm sure you can imagine. After all, anxiety gurl doesn't just go into remission once cancer goes into remission. It didn't help matters that my scan came at one of the busiest times in the semester and at work, which meant I was already riled up from all of the external stuff going on in my life. Thankfully, my anxiety about a relapse has, for the most part, improved (aka I don't think of cancer every few minutes like I used to. Now it's more like every few hours or so. Progress!). I'm sure I will always experience a degree of scanxiety, but thankfully I won't have to go through this for awhile since my next scan will be one year from now (though I'll still be having quarterly check ups for the next year).

So, what else has gone on these last few months? My hair has been growing...slowly, but it's growing! This whole grow out experience made me reflect on how well I handled losing it during chemo. I mean, I was still really pissed off, but to be honest, growing it out has been much more frustrating than losing it. It's just so painstakingly slow. And curly. And frizzy. But, it's hair that is not synthetic and is reasonably similar to what I had pre-chemo, so I guess I can't complain too much. I actually liked it at its pixie stage, but now it's been at this weird in-between length for the last few months and is just meh. When it first started growing back I wasn't sure if I wanted it long again since I am (almost!) in my late twenties and wanted to look all sophisticated with a bob or something equally grown up, but now I just want to have long hair because I can. Then I'll cut it again. But for now, grow, baby, grow!

Here are some pictures for your viewing pleasure:

Curly hair (slightly straightened to tame the wild beast)

A little bit straighter for my work headshot. This took about an hour to do...aka that was one of the only times I've bothered straightening my hair.

Other than my painstakingly slow-growing hair, other post-chemo fun includes fatigue and weight gain (okay, not a ton, but some, and the fact that I'm gaining weight after steriods -- and didn't during -- is frustrating!). The fatigue could very well be from my grueling schedule, and the weight gain from my grueling schedule which forces me to eat way too much takeout, but I'm choosing to blame them both on The Hodge. Asshole.

Other than that, things have been pretty good. Busy, often stressful, but overall good. In some ways this post-year has been harder than the actual cancer part was because it was a lot of rebuilding, but now that thing seem to be finally falling into place, it feels good to have some structure in my life again and to be working towards personal and professional goals. Since I was fortunate to have limited side effects, the little 6 month "vacation" I took -- aka putting my life on hold -- was the most frustrating part of treatment for me (although I have a half-written blog that I may or may not publish someday which discusses how I sort of have a Stockholm Syndrome relationship with those 6 months). Life and its paradoxes!

Oh, and another cool update: I'm co-planning an awesome adventure with the NYC FDTribs group (aka the NYC chapter of First Descents). We're still in the early stages, but we will either be surfing or white water rafting in the first part of this summer! I'm incredibly excited for this opportunity to bring the NYC FD community together over a good ole adventure. And this won't be the only FD adventure...my wonderful boyfriend Scott will be participating in the FD Rock program in the Smokey Mountains. This is a specific trip for caregivers and significant others, and I'm so pumped that Scott will have a chance to experience the FD magic. If you'd like a refresher on First Descents and how adventure therapy is the best therapy, check out my post about my kayaking trip last summer. You can also donate to my fundraising campaign to raise money for future trips for young adult cancer survivors here.

Thanks, as always, to my family, the Meslows, my awesome care team at the U of MN, and, of course, my wonderful friends. You all were crucial in helping me get this far and (somewhat) staying sane throughout this whole ordeal. <3

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!