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?!
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!
