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...