Boston Marathon & the DR

Hello friends!

A lot of wonderful things have been happening since I last updated my blog at the beginning of Camp Koru (camp for young-adult cancer survivors) in early November. I was originally going to discuss my time at Camp Koru in this blog post but it turns out I have so much to say that I want it to have its own dedicated post, so that will be released at a later date. Why not spread out the good vibes, amiright?

2018 Boston Marathon?!

About 6 weeks ago I applied to run the Boston Marathon for IMPACT Melanoma (more about them later). It was very late in the application process and I was rushing to get it in as they accept runners on a rolling admission and only have a 25ish spots for “hundreds of applicants.” Much to my excitement I had a phone call interview a few days later, which went well and was told I would hear back by the end of the week. Long story short, I didn’t hear back until January 2nd – about a month later than I was initially expecting, (due to delays in receiving numbers from the BAA). While I was “running” during this month of purgatory, I wasn’t training by any means, and had pretty much given up hope that I would be accepted. It literally felt like I was waiting for some [insert dating app] bro to text me back, after we had an awesome first date and totally seemed to be on the same page, and then boom – he ghosted for a month and I went through the 5 stages of grief. But alas! Turns out he was in a coma that whole time but now he’s awake and WE’RE IN LOVE.

Sorry, got a little carried away with that analogy. Anyway, I am SO EXCITED to announce that I am running the 2018 Boston Marathon (also my first marathon ever)  with Team Running for Cover to raise money in support of IMPACT Melanoma – a national non-profit organization dedicated to reducing the incidence of melanoma through education, prevention and support!

I cannot tell you how emotional this is for me (but actually I can and I’m about to). It has been a dream of mine to run the Boston Marathon ever since I was a little girl. Every Marathon Monday in the past I would tear up and yell my self hoarse for strangers. Now I get to not only run the Boston Marathon myself (a top 5 personal bucket list item alone), but I also get to raise money for a cause that is obviously near and dear to my heart. I’m not gonna lie, I’ve already gotten a little emotional on my training runs thus far.

Please help me reach my goal of $10,000 by donating to my personal fundraising page (click on the image)!

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Fundraising Update: I am overwhelmed with the generosity of everyone who has donated thus far. In just 3 days, I am already 68% of the way toward my goal. I initially thought the fundraising was going to be the hard part, but it turns out I am supported by some of the most benevolent friends and family (and even strangers!) in the world. I cannot thank you enough, your support means the world to me. Keep up the good work, everybody!

Now for the real hard part – the running. While I’ve been running to train for frisbee, stay and shape, and for my general mental health since my teens – I have only run 2 official “races”. A jingle bell 5k in Somerville and a the 5.2 mile Brew Run in Brewster, MA – both causal races that encourage drinking beer at the end. I actually once trained for a half marathon (Hyannis Half) during the 2014-2015 winter from hell where Boston had weekly snow storms dumping record-breaking amounts of snow on my poor city. The race got canceled during a 10 mile training run I was on a week before the race. I was pissed. If you are in the northeast, then you are probably thinking what I am thinking – which is that I am cursed. So far this winter has sported WEEKS of single digit/subzero temps and a bunch of snow and ice. Yes I have still been running outside, and yes mom I was wearing like 4 jackets, and yes Dad, that was way too many layers, and no I probably won’t join a gym because they are terribly expensive and make it nearly impossible to cancel your membership (not to mention I consider running long distance on a treadmill cruel and unusual punishment). It hasn’t been easy but I have never been more motivated to run in my life… and nothing compares to a melanoma diagnosis so make like land Dory and just keep running… just keep running…


I also just remembered I completed triathlon when I was a sophomore at Earlham College. That has to count for something right?

Medical Service Trip – La Romana, Dominican Republic

Remember when I posted on facebook several months ago asking you guys for donations for a medical service trip I was going on? Welp – it’s time! I am traveling to La Romana in the Dominican Republic as we speak (on dah plane) with a group of NP students and professors from MGH IHP to provide medical services and health care to impoverished sugar cane workers and their families. We raised money to purchase much-needed medical supplies and medications, since they literally have no access to these very necessary items. We were supposed to have been there for a few days now but our original flight got canceled but we were able to re-book and here we are. I will have very limited access to the internet while I’m there, but a super awesome lady in our group by the name of Courtney Owens has volunteered to bring her laptop and  be the head blogger for our trip! So if you are interested in following along, hearing more about our scholarly projects,  and reading more about the travel fiasco on friday – feel free hit up our blog – Nurses in La Romana.

For now, just wish me luck at getting through customs with 1,000 condoms and a bunch of Styrofoam bananas in my checked bag (I am teaching about HIV prevention).


The “models”


Because this post lacked color, here are a selection of photos from the last few months – including vacation to San Diego to visit Shira & Tom and surf/visit with Lege’s cousins, a quick pit-stop in vegas, Christmas with the Freedman/Trittipo Clan, and some random stuff mixed in.


4 month Update & Cancer Camp

Hello World!

I can’t believe another 4 months has flown by since my last set of scans. It’s amazing how time flies when you’re not enduring state of the art immunotherapy treatment that makes your immune system try to kill you… but in a good way, (most of the time).  Welp, lots has happened during the best season of the year (frisbee season) but it just ended a couple of weeks ago and I’m just starting to crawl out of the black death hole of depression that post-nationals and the daiquiri deck leave you in to die. It turns out that it’s harder to shake that depression when you lose in the finals and you threw a turnover during a pivotal moment of the game… ANYWAY, I digress. I’ll get to the stuff you guys actually come here to read:

Scan results

Before I get into all of the nitty gritty, I’ll just tell you all that my most recent set of scans were CLEAR! This means I am still at NED (no evidence of disease) status. This is great news and nothing changes since my last scans, except for that my oncologist had a little mix-up and told me to come back in 3 months instead of 4. It still bothers me that there is no guarantee that the cancer won’t come back, and that the chances of it returning lie somewhere between 40-60% but every day it gets easier to deal with this reality. Also, everyday there seem to be new breakthrough’s in research for Melanoma. About a week before my scans I received a letter from my oncologist that would have changed my treatment had it been this time last year (if you recall, we did change my treatment this time last year but it would have been different even still). Since new study results have been published, they no longer treat patients at my stage with Ipilimumab or interferon. There is a new BRAF targeted treatment (BRAF is a special melanoma gene mutation that my particular tumor had) as well as another novel immunotherapy agent called nivolumab, both of which are safer and more effective than either of the treatments I received last year. My oncologist and I laughed about this together, which shows you how far I’ve come. At this point, I am still NED so it wouldn’t make sense to start another treatment now. But I do know that if Melanie ever decides to show her ugly face again, there are a number of punches I can throw at her.

I don’t know if it was because I was stressed about school or excited about Camp Koru, but unlike my last scans, these were pretty painless, emotionally speaking. I didn’t shed a single tear, and it’s not like I was trying to fight it anyway. I didn’t feel any more or less confident than any other time but a weird sort of calm just came over me while I was there. The only issue was the CT technician told me I had just 40 minutes to drink the 2 bottles (900mL total) of vanilla barium sulfate (which is not a lot of time when you account for wanting to gag after every sip). At my attempts to finish quickly I plugged my nose and tried to chug a whole bunch. Big mistake. I have never been so close to projectile vomiting, and not… However, knowing that I was still going to have to drink it again if I tossed it up, I don’t know how I did it, but I kept it down. Crisis averted. Big props to Lege for talking me off the cliff a few times. And in general, Lege has been the most amazing support partner. Without asking, he knows what to say, what to do, how to act around me, especially when I get all canceremo.


Drinking vanilla Barry

CT Scanner!


Camp Koru

So when I first was diagnosed and I was looking for support, I did what any millennial would do and joined a facebook group for people with melanoma. Huge mistake. It turns out in this group 90% of people posting are 60+ year olds posting pictures of their moles and other naive folks commenting on said pictures saying “get it cut out now!!!” and other unhelpful things, etc. The other 9% are people posting about their horrible experiences but in the end saying they know Jesus will find a way to save them. To each, their own, but obviously I was not going to find anything useful from this group…. UNTIL one random day some angel from heaven (the 1%) posted a link to free resources for cancer patients. I randomly clicked and found a few camps or retreats. None of them seemed good for me AND THEN the very last one was titled “athletes for cancer.” I was like YUP! They have since rebranded and now call themselves camp koru or project koru (good decision guys, because it sounded like athletes were giving cancer the thumbs up). So this camp is targeted to young adult cancer fighters/survivors ages 18-39 who want to find healing and connection through sports and outdoors adventures. Particularly learning how to surf in Hawaii.

This. Could. Not. Be. More. Perfect. For. Me.

As you know, the one thing that has been missing for me is finding other like-minded individuals who have experienced similar traumatic cancer events and ideally learning how to heal together via human connection and shared experience. It’s not common for 20-30-40 something’s to have to face our mortality this early in life so those that do, I would think may have something to talk about that “normal people” won’t really have insight into. Also, initially when I was having difficulty getting my strength back after treatment, I was told it could take “years.” I had never imagined a life for myself with out sports and ultimate and the thought of not being able to play at my previous high level with all my TEAMmates, was depressing and terrifying. It turns out I picked up lost ground quickly and this season ended up being one of my best seasons individually speaking. But I know I am going to learn and grow so much from this experience.

Any who, I am SO EXCITED. Also I am currently on the last leg of my flight from LAX to OGG (Maui).*** I gave myself a day to recharge and get over jet lag at a hostel on a beach. Then tomorrow I’ll be meeting 14 other cancer warriors around my age for a week of surfing, healing, paddle boarding, hiking, yoga, and all you can eat organic goodness. Feel free to check out the website for camp koru, and would encourage you to donate so people like me can attend these camps for free (except for flights).

****UPDATE: It’s been a couple nights since I’ve had Internet access buuuut I just had my first night with everyone at Camp Koru and it’s amazing. I’ve already had so many wonderful conversations and feel so connected with literal strangers. I’m the only melanoma kid in a school of breast cancer people (plus a few other cancers) but it’s already amazing. We all need this so badly. Nobody prepares you for life after cancer and it’s just so great to talk to other people who have been going through the exact same issues.

Life Updates

Ultimate/Brute Squad

This season was a ton of fun. Brute Squad had lots of success. For me, it was my first year being a permanent O-liner, which was lots of fun. I got to throw the disc a lot more than when I was on D-line. Nationals were in the storied Sarasota, FL this year. We made it all the way to the finals, but then lost to Fury on double game point. Huge bummer. But now that the depression has lifted, I am more motivated than ever to crush in 2018. Also, we earned a bid to worlds! So we can potentially win the world next July! Unfortunately instead of worlds being hosted in cool places like Australia or Perth, like it has in the past… Worlds in 2018 will be hosted … in…. Cincinnati, OH. Another huge bummer…. But at least flights will be cheap. No offense to any Ohioans out there.

Enjoy some pics from the season below. Apologies for the atrocious formatting, the WiFi is so bad I could only add pics from my phone so my editing tools are limited. Instead of arriving captions for all them I’m just gonna have you ask me for the back story if you’re really curious 

Grad School/MGH IHP

I am currently in my 2nd to last semester of grad school. I have two amazing clinical placements and I’m learning SO much. One of them is at Neurosurgery @ Lahey Medical center in Burlington, MA. The other is with Elder Service Plan, which is a PACE program servicing camberville – Medford area. Can’t believe I’ll be graduating in May but I also cannot wait to be done with school and be out there taking care of people.

Oh, in January I’ll be going on a medical service trip with a few colleagues and professors at the IHP. We’ll being working setting up small medical clinics at Bateyes in the Dominican Republic. Bateyes are where many Haitian sugar cane workers and their families live and they have no access to healthcare otherwise. That should also be a really eye opening and hopefully rewarding experience.

As for camp Koru – I’ll assuredly be posting daily on facebook and instagram, so feel free to follow me along there.

Love to all, and as always – fuck cancer

-Schwambomb / Laney / Elana/ Hei Hei (my camp koru power name… story to come later).


My 1 year update and thoughts on “survivorship”

I realize that the anxiety some of these posts may cause, so without further delay I’ll get to the…

Good News:

I had my 1 year scans (CT of abdomen, chest, pelvis and Brain MRI) and blood work about 4 weeks ago and received the results later that week. That whole week of tests and appointments was terrible but scan-day was the most traumatizing. I cried like a child who’s trip to Disneyworld got canceled at the last minute. Fortunately, we got excellent news that at 1 year, my scans showed No Evidence of Disease (NED)! While the statistics for 5 year survival for someone in my situation are pretty grim [65% for stage 3b treated with ipi], we all (including my oncologists) feel that my chances of survival are better than this for a multitude of reasons. Also being NED at 1 year is an important prognostic marker. All of this is good news and puts me in a good position moving forward. I will continue to have scans and blood work every 4 months for the following year to make sure there is no cancer recurrence. I was hoping that this news would bring about feelings like joy and relief, which it did. But unfortunately these positive feelings were fleeting and quickly replaced by a familiar wave of anxiety, doubt, fear, and uncertainty.

I am learning that survivorship is a very tumultuous state of being. I can understand how my reaction may be confusing for someone who hasn’t faced a cancer diagnosis personally. I myself didn’t understand my own feelings at first; shouldn’t I be celebrating that I am currently “cancer free”? Shouldn’t I be less worried than I was 1 year ago? Shouldn’t I just be grateful to be alive? Why can’t I just trust my scan results? I desperately want to feel these things, and I am working hard to get there but I realized I have a lot of processing and mind body healing to do first. [side note: I am doing much better since I started writing this post 3 weeks ago]

Fear, Doubt, and Anxiety

Let me explain the why I have these feelings: I have been traumatized. This whole journey started with a misdiagnosis 7 years ago. They took a biopsy, they said it was benign, they were wrong. Just in case they removed the mole with wide CLEAR margins. Even if my early stage melanoma had been diagnosed correctly, the fact that it metastasized to my lymph nodes puts me among the 3-5% of people for whom that happens. Unlucky, for sure. Fast forward to Spring of 2016, I was told by 3 DOCTORS that the nodule under my arm was benign. After an ultrasound, one of them even said verbatim “YOU DO NOT HAVE CANCER.” They told me I didn’t need to remove it and that doing so would only be for cosmetic reasons. Well, there was a little voice and a terrible feeling in the pit of my stomach that said, this is not normal, get this thing out of you now. So I had them cut it out of me and it turned out to be fucking stage 3B melanoma. Maybe now you can see why it’s difficult for me to feel at ease when I’m told I have “NED”. Initially my skepticism is what actually ended up saving my own life, so this is why I am having a hard time turning it off, even with medical technology and basic logic screaming at my face.


Gross Specimen: my tumor

On top of this, Melanoma is notorious for its ability to recur and metastasize, which at my stage is considered high-risk. This risk is the whole reason I had adjuvant immunotherapy. Technically I was NED after my surgery last July, but because the risk of recurrence is so high, they recommend systemic therapy to lower that risk. In a small percentage of patients, Melanoma has the ability to lie dormant and then can recur even after 15+ years of being NED. My oncologist could not give me any statistics for my chances of recurrence, just the basic 5 year survival (65%). This is part of the reason I will still be having scans and blood work every 4 months this year. I could be cured or the cancer could come back in 4 months or 6 years. We will never really know, so in that sense it feels like there is never really good news, just the absence of bad news.

As you can see, there is a great deal of uncertainty moving forward. When you are undergoing active treatment for cancer you have a plethora of resources ( daily/weekly appointments with your healthcare team, blood draws, massage therapy on sight, friends and family support, meals, etc). While time consuming, it was comforting to know that I was being watched so closely to prevent bad things from happening. In my newfound 4 month intervals of freedom it is difficult to quell my nerves when a new symptom pops up. I am supposed to be vigilant to watch my body for any changes or signs of recurrence while also avoiding turning into a complete hypochondriac. Before my last set of scans I was feeling particularly short of breath at brute practice one day and the thought popped in my head for a split second that it could be because maybe there’s a new tumor in my lung. This thought of course spurred a small anxiety attack, which made said shortness of breath worse. I was able to calm myself down pretty quickly and later dismiss the tumor hypothesis, but just the fact that these types of fears and symptoms aren’t completely irrational is a bit unsettling.

In addition, when I was in treatment I felt like I was doing something very proactive with my time – I was actively fighting cancer and I felt so much strength and support from those around me. Nobody prepares you for after-treatment or “surveillance.” I am in the same state as I was last year—NED—but now I just have to sit back and hope that the cancer hasn’t returned or doesn’t recur. It’s hard for me to sit here with the weight of uncertainty and not be able to do anything about it. Those of you who know me as an athlete, know that I’m aggressive, that I play with passion and heart, that I’ve spent a majority of my life sacrificing my body to catch a flying piece of plastic or prevent a ball from going in a goal. So when my life is seemingly on the line, I want to do everything I can to save it. Sitting on the bench is hard both in sports and in life.

Sunshine and happy shit

BUT I AM GETTING BETTER! I continue to see a therapist and psychiatrist  who have helped me understand that what I am feeling is not abnormal for cancer patients and survivors. It is actually well documented that cancer patients often suffer from some form of depression or anxiety after active treatment ends. Even though I am in NP school, I didn’t realize I was traumatized or experiencing PTSD until they spelled it out for me. Normalizing these feelings helps me with acceptance and allows me to move forward. Denying these feelings or my experiences backfires in a big way (which unfortunately is seen first hand by those that love me the most). I am also doing a lot better at dealing with random “symptoms” that pop up. By symptoms I mean stomach aches, headaches, and moments of being breathless. I remind myself that I am a god damn health professional and I can usually rule out cancer being the cause right away.

As you can see, I feel like my fight with melanoma is far from over. I do not consider myself a cancer survivor yet, and I’m not sure I will for a number of years, but I hope to get there both physically and emotionally. Taking the time to process all of these emotions and feel these feelings has been hard but ultimately, really good for me. In fact, every day I feel a little bit better, a little bit more hopeful. Sure I have my bad days now and then, but ultimately I feel like I am growing stronger emotionally and physically every damn day. Getting back into an everyday routine has been extremely helpful. My 3 week intensive clinical rotation and the VA was amazing and the Brute Squad season is well underway and has been therapeutic for me in every way.

What can you say to me (or anyone fighting/surviving cancer)?

People have asked me how they can support me or even just what they should say to me. This is a great question. At first, I didn’t know. What I have realized is I am averse to people who say “congrats on being cured/in remission”, “I know you will be fine” or something along those lines. Firstly it’s false for all the reasons I explained above. Secondly it implies that you can see the future, which you can’t and last time I was told “you’re fine” it was cancer. Thirdly, it discounts what I am and have been going through. If you have said something like this to me, please don’t feel bad because I understand you were trying to support me and had good intentions. Also, like I said, I didn’t even know what would have been helpful initially. Now that you and I know all of this, here is something helpful that you could say to me (or to another cancer person who feels the same way): “I am so happy to hear about your good news so far, and I am still with you for whatever the future may bring moving forward.”

Also, when someone says “congratulations” to me without context, I get very confused. I don’t know if you are congratulating me on my engagement, my ability to still be alive, or the fact that I took a shower this morning. Maybe lets just avoid that word all together, for now. A good rule of thumb for me is to be clear or direct with any question you are asking: like “how is the cancer thing?” is actually way better than “how are you doing?”

disclaimer: I may be unique in this respect, so the above paragraph does not necessarily apply to all other cancer patients. 

I’d love to write a blog post entirely dedicated to talking to cancer patients/survivors if I can find the time in the future.

Thank you

It has been so wonderful to reflect back on all the support I have received over the past year from family, friends old and new, my TEAMmates, and even strangers. I received countless postcards, letters, messages, emails, texts, gift cards, and home cooked meals delivered to my door. I received a lot more than I was able to respond or send back and I want to thank you all for your understanding. I don’t think I will ever be able to respond to every email or message, but I loved reading every single one of them and they all gave me strength. Additionally I always joke that there are definite benefits of a late stage cancer diagnosis. People you’ve lost touch with come out of the woodwork and you get a second chance to rekindle fading friendships. I cherish this opportunity. This diagnosis has also strengthened many of my existing relationships. Personally, I have learned to be less hard on myself and to try to fucking relax more and also enjoy relaxing. I think I truly understand and feel gratitude for life and relationships (and Obamacare) in a way I wouldn’t have otherwise.

My parents have been amazing. They probably have the toughest job. They are the only ones (aside from Lege) who have experienced my rollercoaster of emotional reactions as I hear both good and bad news. It hurts me to see the effect on them as I deal with all of these feelings but they continue to love me unconditionally even give me some space when I’m unable to ask for it. My mom is probably texting me right now to say “Don’t worry about US, we’re here for YOU.” They also took on the very difficult job of sending out my one year results to our family and close family friends while I was unable to even open my editing screen without crying a fucking river.

Lege, you already know how I feel about you and luckily our relationship/communication is so on point that I don’t have to tell you in a blog post. Also, you are sitting right next me me. You guys we’re getting married.


Life Updates:

I’ll keep this short –

Ultimate: 5th season with my ultimate frisbee team Brute Squad is underway! We won our first tournament in Colorado. It was really nice to play without an ace-bandage wrapped around my chest like I had last year. This weekend we are headed to MN for the U.S. Open, an international tournament featuring the top 5 US teams and teams from Canada, Great Britain, Japan, and Colombia (in the women’s division anyway). Some of our games may be streamed on ESPN3, you can follow Brute Squad on twitter if you are interested.


Also at practice this past weekend I took a very desperate, high speed attempt to score to the face.


School: I did a 3 week intensive clinical rotation at the VA in White River Junction, VT in June and it was AMAZING. It was my favorite rotation so far in primary care and I had a great preceptor and really great clinical experience in general. I also got to live with one of my best friends and former TEAMmates, Bitterman, who is currently finishing an NP residency there. I’m still chugging along this summer semester and then I have 2 more semesters until I graduate in May 2018. Can’t wait.


Thank you to everyone for reading. As always, don’t hesitate to reach out or ask me any specific questions. I love specific questions.

Much love & fuck cancer.

***Important update 8/1/17 @ 1:30pm (EST)

Karen, my future mother-in-law created and emailed me this gem after reading this blog post. It’s too good not share and its SPOT ON.

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Ryan West

At the end of my last post (if you made it that far) I mentioned another young ultimate frisbee player battling cancer, named Ryan. In the two days that passed since I publish that post, Ryan deteriorated rapidly. I wrote the following post this evening on facebook and was encouraged to share it in my blog.

I didn’t know Ryan personally but I came across his blog one day while I was browsing facebook on my way home from my own infusion at MGH in early November. I remember I spent the rest of the day reading (laugh/crying rather) through his blog instead of doing homework. We shared similar beginnings to our story: Ryan was initially healthy, athletic, young…an ultimate frisbee player from New York. We were both thrown a curveball in the form of a late stage cancer diagnosis while we were in the prime of our lives. Unfortunately, Ryan was at Stage IV colorectal cancer when he was diagnosed. Since my diagnosis (stage IIIb melanoma) I have been yearning to connect to someone my age going through a similar experience. I wanted to email him and be like, “Hey I play ultimate and have cancer too! Lets be friends!” I didn’t send the email. I thought about all the people who had emailed me that I had not yet responded to. It was something I struggled with and didn’t want to be that for Ryan. I also knew his time was probably more limited than mine. In retrospect, I should have emailed him anyway because ultimately I’ve felt it’s great to hear from people even if I don’t get a chance to respond.

After my infusions ended/side effects dissipated I was trying desperately to get back to normal life. I forgot about Ryan’s blog until recently when it popped up on facebook again. I read the updates saying Ryan essentially was out of treatment options. This broke my heart. Part of me was confused about how emotional I was getting over someone I had never met. Ryan probably never knew I existed, but just reading his blog I felt we had bonded in our unfortunate shared experience of being a young person strapped into the monster cancer roller coaster against our will. Ryan was experiencing my worst nightmare.

I decided to donate the money I had left over from the fundraiser my TEAMmates held for me. Ryan and Clover (his new wife) clearly needed it more than me and donating it to them felt so right and eased that sense of helplessness that was overwhelming me. I made the donation on Wednesday. Yesterday Ryan was moved to hospice, and this morning I woke up to a text from a mutual friend saying that Ryan had passed away. My heart aches for Ryan’s friends and family. It’s just unfair, horrible, and devastating.

Even worse is that [To quote a blog post by one of Ryan’s friends (“Feetch”)]: “when you’re diagnosed with cancer, nobody will give you life insurance. This often means that the people you leave behind are stuck with bills while in mourning. Any of the money raised here that can’t be used for Ryan’s bucket list, will be saved for future use towards a memorial, FUNeral, burial, and all the stuff that sucks about cancer. It sucks enough to watch a loved one suffer, but to then have the added stress of trying to pay for those services while mourning, would be terrible.”

Let’s try to make things less terrible and consider donating to alleviate the huge financial burden:

I’ll continue fighting for you Ryan. #FuckCancer #RyFight

Lege’s Thoughts

Lege is way better than I am at articulating things we both are feeling. I asked him to add his thoughts here:

Schwam shared Ryan’s story with me since the beginning, and in the last few days she kept me up to date. At the same time, the condition of another young woman she was following also deteriorated. We arm ourselves, even in Schwam’s current “healthy” state, with reassuring mental defenses like “She’s young” and “She’s strong.” These recent developments take a big swipe at those comforts. We are feeling many things: how lucky Schwam is, how unlucky Schwam is, how much pain these other families must be in, how uncertain the future is. I’m most proud of Schwam for letting these feelings out, and for letting me let them out. You HAVE to let them out, AND you don’t necessarily get to choose when they come out. But whatever you can do to open up to the grief and fear when they come through, do it. There’s been a lot of crying over here, but I’m happy there are two of us.

Get Naked – A guest post by Aunt Val about visiting the Dermatologist

Hey everyone!

This is Elana/Schwam speaking here. I just wanted to introduce my Aunt Val who wrote the blog post below in November 2016. I have been meaning to share this for a while but a lot was going on at the time and now seemed like the most appropriate time to share as last week was my last NP dermatology clinical of the semester  AND it was Aunt Val’s Birthday! At the end of this post I will discuss my dermatology clinical rotation as well as actual guidelines regarding skin cancer screening. But for now, I’ll let Val take it away…

Guest Blogger Aunt Val – A Trip to the Dermatologist

Hi all, it’s Valerie Rind here, aka “Aunt Val.”

Elana’s dad (Eric Schwam) is my brother, so Elana is my niece. I shed the Schwam name when I got married because I was annoyed that no one could ever spell or pronounce it.

As you know, Elana does more than just make the best of a bad situation (like having an inconvenient last name, or, oh, y’know, having cancer). She continues to amaze everyone by turning things completely around and showing who’s the Schwamboss.

Almost makes me wish I kept the name. Nah, not at all.

I’m the least medical person in the family where my brother = doctor, my sister = nurse, and me = lawyer and author.

I still don’t know how to pronounce Keytruda or Ippitymumbai and it’s a damn good thing I don’t have to inject myself.

So my comments are from a layperson’s perspective (i.e., medical idiot) but I hope they’ll be helpful.

Aunt Val Visits the Dermatologist

Two or three years ago I went to a local dermatologist about a small mole I had (on my left breast, if you really must know). He said it looked OK.

This year I noticed the mole was getting more pronounced. I told myself to get it checked, but you know how it is. One more thing you keep putting off.  Particularly if it might involve needles.

Prompted by Elana’s diagnosis, I said to myself, “Self, go get that thing examined. Now.”

Aunt Val Visits a New Dermatologist

Another dermatologist examined my mole and said it looked perfectly normal. He excised it while I tried to distract myself by telling him all about my awesome niece Elana.

My ex-mole was sent off for biopsy.

The dermatologist asked if I wanted a full body exam. I thought he meant he’d pass some electronic gizmo over the surface of my skin to see what showed up. (You medical experts are NOT allowed to laugh at me.)

He explained it was a visual exam. I dropped my gown and he looked a bit startled. You’d think he’d already seen many naked, mid-life women during his medical career. After all, just moments ago he was up close and quite personal with my left breast.

Nothing on my body looked abnormal, he reported.

It’s What We Don’t Know

The dermatologist pointed at some faint white spots on my arms. “I know exactly how you got those,” he said. “When you were a teenager, you slathered on baby oil, lay in the sun, and burnt your skin. Repeatedly.”

“Well, of course, that’s what everyone did,” I said. “Now I use SPF 6249 or whatever the highest one is that blocks everything.”

We didn’t know 40 years ago that frying our skin was harmful. The dermatologist theorized that in 40 years we’ll discover that using cellphones has long-term consequences. Whatevs.

Lessons Learned the Hard Way

Elana’s experience has taught me many things so far:

  • The power of the spirit.
  • The advantages of healthy living.
  • The incredible importance of having the emotional support of your family, partner, friends, and colleagues.
  • The need to get accurate, up-to-date medical information and informed opinions.
  • That medicine sometimes asks a lot more questions than it answers.
  • That you need to make the decision that’s right for you.
  • That a keen sense of humor is essential.

And if you have any doubts about a medical matter, don’t delay.  Get it checked out.

Again: If you have any doubts, get it checked out.

Oh, and in case you wondered: The biopsy of my mole showed it was benign.

#fuckcancer #awesomeniece

Thanks Aunt Val! This is such an important message to send out to the world. If you interested in  more words of wisdom by my Aunt Val, check out her website She also wrote a book, Gold Diggers and Deadbeat Dads, which is available at Amazon, on the iBookstore, and at Barnes & Noble for NOOK.

Skin Cancer Screening – Soap Box Alert!

For part of my clinical rotation this semester I had to research a screening guideline so naturally I picked the topic of skin cancer. I was surprised and pretty upset about finding out the following U.S. Preventative Services Task Force (USPSTF) statement on skin cancer:

“There is insufficient evidence on the benefits or harms of routine visual skin examinations by a clinician to make a recommendation for or against this type of skin cancer screening for adults (18+) who are asymptomatic” (USPSTF, July 2016).

Seriously? Go eff yourself.

This recommendation based on poor, inconsistent research in skin cancer screening and there is fair evidence that supports screening for skin cancer by clinicians to be moderately accurate in detecting melanoma.

Keep in mind, this recommendation does not apply to:

  • Adults with a personal or family history of skin cancer
  • Adults with high-risk of skin cancer
  • Self-skin exams
  • Exams done by dermatologists

The American Academy of Dermatology (AAD) responded to this statement:

“The American Academy of Dermatology is disappointed with this recommendation [via USPSTF], as dermatologists know that skin cancer screenings can save lives, yet we acknowledge the need for additional research on the benefits and harms of skin cancer screening in the primary care setting.” – (AAD, 2016)

Other Recommendations include:

  • American Academy of Dermatology
    • Recommends performing regular skin self-exams (once a month) to look for new or suspicious spots, and seeing a board-certified dermatologist to evaluate anything changing, itching or bleeding on the skin.
    • If you are at high-risk of skin cancer – seek dermatologist to see how often you should get skin cancer screenings (AAD, 2017).
  • American Cancer Society
    • Recommends skin cancer screening every 3 years for adults age 20-40, and annually for adults older than 40.
  • American College of Preventive Medicine
    • Recommends a full body clinical skin exam for patients at high risk for malignant melanoma.
  • American College of Obstetricians and Gynecologists
    • Recommends screenings for females aged 13+ with a history of habitual exposure to sunlight, a family or personal history of skin cancer such as basal cell carcinoma (BCC), squamous cell carcinoma (SCC), or malignant melanoma (MM) (Buttaro et al, 2017, p.245).

As you can see, nobody really agrees on the regularity in which people should get their skin checked and if they should get their skin checked at all. The underlying theme is if you are at high risk, start a conversation with your dermatologist (if you have never seen, one now is the time to get one)

All this talk about “high-risk” patients, who is at high risk?

The sun causes 90% of skin cancers

  • People with fair or light colored skin
  • Skin that burns or freckles rather than tanning
  • Having naturally blonde, red, or light brown hair
  • Having blue or green eyes
  • Having more than 50 moles, large moles, or irregular (atypical/dysplastic) moles
  • Having a family history of skin cancer (blood relative)
  • Caucasian males over age 50
  • History of blistering sunburns, especially in childhood
  • History of indoor tanning use
  • Recipient of an organ transplant
  • Having a weakened immune system (due to immunosuppressive drugs or HIV)
  • Hx of other cancers such as breast or thyroid cancer
  • Taking medications that make you skin more sensitive to the sun
  • Certain autoimmune diseases – (Lupus)
  • Having xeroderma pigmentosum or Gorlin Syndrome
  • Exposure to carcinogens such as arsenic or coal
  • Having an area of skin that has been badly burned by the sun or other means.
  • BRAF – mutation (melanoma) – 50% melanoma pt’s have this mutation in their tumor (AAD, 2016; American Cancer Society (ACS), 2016).

This is not an exhaustive list, but you get the idea.

Warning signs of skin cancer

  • An open sore that does not heal for 3 weeks
  • A spot or sore that burns, itches, stings, crusts, or bleeds
  • Any mole or spot that changes in size or texture, develops irregular borders, or appears pearly, translucent, or multicolored.
  • ABCDE’s of Melanoma – arguably the most important info you can provide for a patient, caregiver, or friend (AAD, 2016; American Cancer Society [ACS], 2016).Image result for abcde's of melanoma

There are a TON of amazing free resources on the AAD website that includes in-depth fact sheets, charts to monitor your own monthly self-skin exams, and other really informative sheets about all types of skin cancer. Overall, we are our own best advocates. If you notice something on your body changing, be an intelligent human and go get it checked out (like my Aunt Val!)

My mole was on my back. It became itchy and I’m sure it was evolving as I remember not knowing if it had existed before it started itching. Since the risk of having another melanoma is very high for me, I am checked every 3-4 months this year. Eventually I will probably move on to the skin exams every 6 months but the reality is that most patients discover their own skin cancers, which is why I still check my body monthly. It’s important not to check more than monthly, otherwise you won’t notice subtle changes.

Okay, I’ll get off my soap box now. I have a shitload more information about skin cancers and treatments and such but I will hold off for now.  I’ll eventually move this info over to a permanent page on my site so it’s easier to reference.


American Academy of Dermatology (2017, Feb. 3). New research highlights Importance of melanoma prevention, early detection. Retrieved March 19, 17 from

American Academy of Dermatology (2016). Spot Skin Cancer: Free Resources. Retrieved March 19, 17 from

American Cancer Society (2016) Skin Cancer Prevention and Early Detection. Retrieved March 19, 17 from

Buttaro, T. M. et al. (2017). Primary Care: A Collaborative Practice. (5th ed.). St. Louis: Elsevier

USPSTF (2016, July). Final Recommendation: Skin Cancer Screening. RetrievedMarch 19, 17 from

Life Updates:

No news, is good news! Things have been pretty uneventful for the last month or so since my last post, which is the least amount of action or “adventure” I’ve had in my life since I was diagnosed. This is excellent because I was honestly pretty exhausted from all my own organs raging mini civil wars on my body. I have been deep in ultimate frisbee training and tryouts for Brute Squad, which are going pretty well. It’s amazing to me every year how many young up-and-coming ultimate athlete’s there are. Every year the sport gets more and more competitive and it’s so awesome to see it grow, but also, it makes tryouts pretty fucking exhausting. I’m one of the oldies now at the ripe old age of 30 but I’m hanging in there.

School is wrapping up this semester with this being the last week of class and I have two finals next week. I can’t tell you how much I am looking forward to having a real extended vacation without cancer treatment or NCLEX studying. I will finally get around to emailing so many people who have reached out to me these past 10 months as well as organizing my normal life a little bit more.

Some exciting things that have happened over the last few weeks include my first easter egg hunt with the Freedman’s (see instagram video), packing up my childhood bedroom since my parents are moving out of Westborough mid May, more wedding planning, and completing my first ever Boston midnight marathon bike ride! The ride was super fun and something I have been wanting to do since I first heard about it.

The Boston Marathon has always been my most favorite Monday and running it has been an item on my bucket list since I first watched runners truck up heartbreak hill several years ago. I get strangely emotional about marathons (maybe I’m not alone?) I think it is such an amazing human feat and it brings me to tears thinking about it. I’ve cried every marathon Monday I’ve attended or watched (and even during a few documentaries that weren’t even about Boston). I have decided that next year (2018) I am going to apply to run and raise money for the Melanoma Foundation of New England. Obviously applications haven’t opened yet, but it’s something I feel really passionate about doing and hope they let me in.

I won’t have scans or skin checks until June, so everything should hopefully stay quiet until then. Minor micro-burst headaches still but they are less and less frequent. Looking forward to celebrating my cancerversary June 28th!



I am not the only ultimate frisbee player battling cancer. There is a guy from New York named Ryan, who I don’t think I know personally, but it’s possible we’ve crossed paths without knowing it (in the tiny ultimate world). Ryan was diagnosed with colorectal cancer in Sept. 2015 that ended up being stage 4. In short, things have not been going as well for him as they have for me. His blog is amazing, and it’s easy to tell very quickly that Ryan is an extremely genuine guy with a huge heart. Laura Bitterman and my Brute Squad teammates set up a fundraiser (schwaming cancer tanks) for me last summer when I was first diagnosed and it was unclear if my health insurance was going to cover anything. I have been extremely fortunate for new immunotherapies combined with masshealth and the Affordable Care Act, that have left me with a surplus of donation money that I haven’t touched and haven’t really known what to do with. It’s always possible my cancer can recur but right now I am doing alright and when I read about Ryan’s unfortunate updates, I knew I wanted to help out. Please check out his page and consider donating as well .

I’ll update again sometime in May. For now, stay sexy and fuck cancer!

Update #19: Good news despite a couple confusing months thanks to Petunia the Pituitary Gland


I lied and said I would get you guys an update over my spring break week (a week ago). But it turns out the place where we stayed had nonfunctional wifi, and also bad cell service so I actually ended up losing a large draft of this post while I was there and was too annoyed to get back to it until now. It was vacation after-all so spending time with my fam and snowboarding was the priority. Again, a lot of time has passed since my last update so here’s what’s happened since then.

Early February: Pituitary Probz

So a week before I posted my last update I had some alarming symptoms pop up…

  • Micro-burst headaches –  1 week after my last prednisone taper I start to experience what I call “micro-burst headaches.” There are one or 2 particular spots on my head that hurt kind of intensely for like 10-15 seconds, then it goes away. On bad days this would happen like 5-6 times a day.
  • Migraine aura/vision issues: I have a migraine like aura where I can’t see right out of my left eye and I have a pressure sensation and light sensitivity for a few days. The acute vision issues lasted for only a few minutes but was noticeably blurry for about 3-4 days afterwards. Also my pupil is bigger in my left eye. At this point I am alarmed but chalk it up to having my first migraine aura.
  • Almost passed out: 3-4 days after the migraine episode I go to a sculpt yoga class with a few of my teammates. I have been going to these classes for years and never had a problem. About 20-30 mins into the class when I pick up a heavy set of weights I start feeling extremely nauseated and light headed. I should mention that I am kneeling at this point. I drop the weights and I feel better instantly. I am fine during the next exercise where we don’t use weights. We do another exercise with weights and I am standing. I don’t even remember what exercise we were doing except that I start to feel very lightheaded and dizzy and I get the “feeling of impending doom” which is exactly what happened to me before I passed out last month. So I am an intelligent human and I just sit down on my mat before passing out and I feel better. I try using weights one more time and the same thing happens so I need to rest. For the rest of the class I don’t use weights and make it out alive. My friends also noticed I was acting strange and were watching me closely. I knew something was wrong, this had never happened to me and I wasn’t dehydrated/malnourished. My symptoms were directly related to physical stress I was putting on my body. At this point I was alarmed and emailed Dr. Lawrence and Riley about my symptoms and they had me come in the next day for labs.
  • Potential hypophysitis: Based on my symptoms Dr. Lawrence and I think it’s possible I have hypopysitis, which is a fancy word for inflammation in the pituitary gland. This is a very rare thing to happen to a normal person, but is quite common to have autoimmune hypophysitis for someone who has had treatment with ipulimumab (Ipi). This means my immune system might have started attacking my pituitary gland and maybe causing the headaches and the passing out.
    • I get an emergent Brain MRI, and the radiologist says there is “subtle” inflammation on one side of my pituitary gland, but this would be an “unusual presentation” of hypophysitis since it’s unilateral inflammation. SOOOOO they send me off to a a new specialist named Dr. Faje- a Neuroendocrinologist, who decided he wants to do a specialized MRI of just my pituitary gland where they inject contrast in a more controlled manner to better visualize the pituitary gland. They want to do this because everyone is confused by my symptoms/presentation. He says it may be possible I have a benign tumor there, but at this point we are pretty sure it’s not metastatic disease.
    • 1

      Left image: new MRI showing subtle inflammation on the right side of my pituitary gland. Right image – Brain MRI from October, pituitary gland looking less asymmetrical.

Not Hypophysitis! – the specialized MRI shows that it is pretty much similar to my last MRI so we say, okay I guess.

What caused all those scary symptoms?

Based on some other blood work and tests we had done in between all the MRI’s Dr. Lawrence and Dr. Faje and I all concluded that I was probably mildy adrenally deficient or suppressed after my last prednisone taper. Cortisol is a steroid hormone (gluccocorticoid) produced by the adrenal glands, which has many functions but it’s main function is to allow the body to respond to stress.  ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release  cortisol. Sometimes after taking prednisone (a synthetic gluccocorticoid, which is recognized by the body as similar to cortisol) your body will be slow to respond after a vacation and won’t produce cortisol like it once did. This is not a completely accurate description of cortisol and ACTH so if you want to learn more go to this website or google it.

Pretty much my body was slow to adjust after my prednisone taper which is why at first I wasn’t producing enough cortisol to respond to the stress I was putting on my body, which resulted in me almost passing out and being orthostatic and stuff. My blood pressure was really low those first couple of weeks and my cortisol stimulation test afterwards came back barely passing. I was producing enough cortisol at the time to manage normal life, but when stressed I was at a deficit. However, this has self corrected after a couple of weeks and I have been ramping up my workouts and preparing for Brute Squad tryouts which start in a couple of weeks!

I should mention that I am not having the fainting symptoms anymore which is great. I still have the “micro-burst headaches”, but they are happening less frequently and are not debilitating so Dr. Lawrence and I are just “watching” them.

Some Reflection

This whole pituitary problem went on for about 1.5 months or so which is why I gave my pituitary gland a name – Petunia. Petunia, Melanie, and Louise have been having some quiet ragers in my body the last year. I am very glad there is nothing actually wrong with my pituitary gland and as it turns out she is just naturally asymmetrical like the rest of my special body (see about me section and read about Sally).

This whole pituitary/headache scare however was another reminder in which the way a cancer diagnosis (specifically melanoma) will affect your for the rest of your life. You have to be vigilant about your symptoms when you have stage III melanoma because Melanoma loves to travel to the brain, liver, and lungs. Given my abrupt symptoms, my family was worried that Melanie had traveled to my brain. I was pretty confident it wasn’t a metastasis, but it just goes to show how any tiny little symptom can just blow up and be this huge thing.

I hate making a big deal out of little things, and I just want this all to go away. I didn’t tell my family right away about my symptoms and they were upset. I didn’t want to stress them out if it turned out to be nothing, which it pretty much was. So after we found out it was essentially nothing, I found myself to be both relieved and also simultaneously very upset/angry that I had to put my family through this roller coaster of angst with tons of tests, scans, and unanswered questions. It’s scary and annoying, that I have to take note of everything that happens to my body and link it as sign of cancer progression until it’s ruled out. This goes against my moral code of ignore everything, unless it can’t be ignored because you don’t want to waste anyones time or worry. I’m gonna stop complaining now because the truth is right now I have no evidence of disease and I’m going to enjoy that fact.

On a completely different note- funny short story:   Lege and I planned to watch this movie called “Arrival” at home one friday night. Right before we start it up Lege mentions to me that his parents warned him of a small “cancer scene” and I was like pshhhh, whatever, I can handle it lets watch the movie already. This is not a spoiler alert – but if you’ve seen the movie than you know the first 3 minutes of it are essentially a montage of a close mother-daughter relationship, which starts off really warm but then the daugher gets cancer and dies abruptly in her adolescence. Let me remind you this is the first 2-3 minutes of the movie. So I thought I was gonna be okay, but it’s really well done and Lege looks over at me and my face looks like I’ve just stuck my head in a large body of water. I was both sobbing and giggling about how wrong I was about how I could handle a little “cancer scene.”  Lege paused it and we cried and giggled at my ridiculousness for a minute or two and were able to watch the rest of the movie without any problems. Anyway, great movie, I highly recommend it!

9 Month Scan Results!

Right before I went to Utah on spring break, I had my 9-month CT scans of my neck, chest, abdomen, and pelvis. I also had my 9 month skin check a couple of weeks before that. The point of these scans are to make sure I haven’t progressed to stage 4 disease (meaning that cancer hasn’t metastasized to a distant site or organ). The skin checks are to makes sure no melanoma pops up or spreads superficially. Melanoma is well known to spread quickly and quietly to organs, which is why scans happen so often in the first year. Last week I got my results which were CLEAN AF! This is excellent news, meaning I continue to be at NED status (No Evidence of Disease)! Since Melanoma is such a bitch and has such a high recurrence rate, they don’t often use the language like “cure.” So for now while I am NED status, we still monitor me pretty tight for the next 5 years to make sure I stay that way.

What’s next?

For the first time since I started this journey, I don’t have anything scheduled until 3 months from now (unless some new weird symptoms occur before then – knock on wood)! In June I will celebrate my cancerversary and have my 1 year CT scans, blood work, and Brain MRI! Until then I should finally have some time to post guest blog posts (up next is my Aunt Val who wrote a great post about her visit to the Dermatologist)!

Until then, stay sexy and fuck cancer!

Life Updates/Pictures

School – I am loving NP school for the first time. Not that I didn’t like it before, it was just very stressful. I am now less stressed, and am doing very well in class and am intellectually stimulated and loving my clinical and feeling like I actually know shit and can take care of patients. Considering working in dermatology in the future!

Ultimate: It’s the worst time of the year. I am training, alone for tryouts. There isn’t much rec frisbee happening which means I am having to do awful sprint workouts and stuff when you feel slow after the offseason. Tryout time is stressful but I plan to tryout for Brute Squad again and I’m really excited to see all my old teammates and frisbee peeps in general which starts in 2 weeks! Wish me luck!

Wedding – The momsquad is killing it and Lege and I have barely had to do anything. We got a venue and a date. No complaints here!

Pics from our family ski trip to Park City!




Update #18: (2/1/17) Quick Health Update but mostly Life Updates

Important Note: I have been working on this post for almost a month on random days when I need a break from homework/have time to do things for myself. Unfortunately over the course of this month my health status has changed a bunch, which makes writing posts difficult to organize and also makes them long. For the sake of everyones mental health, I’m posting this as if it was February 1st, and not the actual date (2/8/17). However, I should probably share that since Feb 1st, I have had some new & unwelcome symptoms (weird vision stuff/headaches/ a near syncopal episode) that may or may not be related to Melanie/Ipi side effects that are summarized in my Timeline. I had an emergent Brain MRI yesterday and will be seeing my oncologist tomorrow for blood work. I will post a new blog post all about this when I have more information. For now, just know I am doing well am just monitoring my symptoms carefully.

Update #18: 2/1/17 begins below…

I had 2 days to recollect myself after floating along blissfully after my Cuba trip with Lege before being thrown back into graduate school. I’ll discuss some Cuba details as well as major life events but first I’ll do my duty in updating you on my health status:


We last left off with me typing like a crazy person on my iphone while on my flight to Cuba. I can’t honestly believe I finished that post right before the wifi cut out, pretty unreal considering my history of long drawn out blog posts…  Anyway here’s a bulleted recap of what went down just before I left for Cuba:

  • I took the NCLEX  (Nursing Boards) and that very same day I started having rebound symptoms from Ipi treatment (high fevers up to 103, shaking chills, body aches, crazy head aches, and I even passed out once).
  • these symptoms continued for about 3 days
  • Found out I passed the NCLEX and am now officially a register nurse!
  • I got in to see my oncologist ASAP and they restarted me on a low dose of prednisone (20 mg) which I had to increase (30mg) for a few days because my fevers did not subside on 20mg at first.
  • My oncologist recommended I not go to Cuba (HAHAHAHA, but i guess i get it… but like, nice try guys)
  • I packed extra prednisone & ibuprofen and literally any other prophylactic drug i could get my hands on, prayed to the  Ipi side effect gods to leave me the fuck alone and boarded those planes to Cuba
  • Welp, they listened! The day before I left for Cuba, my symptoms stabilized and I was able to pack my own bag and other than occasional headaches I was pretty much symptom free for the whole trip and Lege and I had an AMAZING time!

Tapering Prednisone… again

As soon as we returned from Cuba, I was back into see my health care team, who was very happy that I was alive, healthy, and symptom free. I had self tapered back down to 20 mg of prednisone while at Cuba and all my labs were normal! Nobody understands why I had rebound symptoms. We all had a few theories but we’re all just making educated guesses at this point.  The good news is, my oncologist believes it’s a good sign that the Ipi has in fact revved up my immune system, and hopefully taken out the microscopic Melanie bitch once and for all. Again, only time will tell. This time they had me tapering prednisone much slower now, but also at much lower doses, in hopes that this will prevent rebound symptoms from occurring. Overall I spent about 4 days on 30mg of prednisone,  5 days on 20 mg of prednisone and 1 week on 10mg. I finished last wednesday.

Labs: I had labs repeated last Monday and everything was normal, which is expected after being on prednisone for a while. I’ll be seeing my oncologist again with labs mid february and then schedule 4 month scans for the end of February. I can’t beleive it’s that time again already.

Update: this schedule is changing due to new symptoms so see timeline for actual updates

Future Treatment

For now, we are still done with systemic treatment. Dr. Lawrence said he would like to see me every 3-4 months for a year to have blood work and scans. The scans will be checking to see if Melanie has recurred and as long as she hasn’t we just stick with scans, watching and waiting. The longer time goes by without reoccurrence, the better my chances are for survival (I think?). If the Ipi has worked, my chances of long-term survival should have increased, and hopefully reduced my chances of reoccurrence to 30-40% (down from 50% prior to treatment) but we don’t have any way of knowing for sure. Also the data is pretty confusing and i’m doing this from memory so take these percentages with a grain of salt.

Update: this schedule is changing due to new symptoms so see timeline for actual updates

Every day that goes by, I feel more and more thankful for suriving the last 6 months thanks to the support from Lege, my family, my healthcare team, and all of my friends near and far. While I don’t consider myself a “surviver” yet, I definitely feel stronger everyday and as long as I’m not having any weird symptoms that I can diagnose myself with, I hardly think about cancer…unless I’m dealing with cancer in school or at clinical.

I’m on TV!

A couple of posts ago I mentioned that I did some interviews for The Story Project at MGH where they allow patients, caregivers, physicians tell their story about their experience with cancer. I got an email a couple of weeks ago asking permission to use my photo for advertising the segment. I gave permission so now this week if you watch Comcast Sports Net (CSN) at all this week and before the super bowl, you’ll see/hear some cool people talking like Adam Vinaterri and Scal and then pics including some guy with a huge beard and me in there somewhere. Pretty cool!

Update: The superbowl happened and it ended wonderfully for New England (TB GOAT and I am still stunned by Edleman’s catch). I doubt they are still airing the commercials but this was the photo they used. I heard from many people, including ex-boyfriends who thought they were hallucinating when my face flashed across their TV screen.


Life Updates:



The Story:

If you are not on social media, then you might not know that Lege and I got engaged while in Cuba! Jokes on you though, because we knew about this 6 months ago. So let me explain… Amazingly, almost exactly 1 week before I found out that I had cancer, Lege and I casually had a conversation that went a little something like this:
“Um, we’re pretty perfect for each other sooo let’s, uh, spend the rest of our lives together.”
I have always enjoyed redefining and breaking traditional gender norms, especially ones that involve women waiting for men to ask them something that should really be a joint decision/conversation. Lege of course shares this sentiment so we decided to fuck the patriarchy and plan the proposal together! Several months later we booked flights to Cuba as a “vacation” but really we planned on getting engaged there the whole time.

 Side note: my mom proposed to my dad over calzones, so it’s possible there is a genetic component here.
Additional side note: It’s not my intention to knock couples who choose to go the traditional proposal route, I’m all for doing what feels right for you, and this is what felt right for us.

We crafted a ring out of family heirlooms that were gifted to us from both families (thanks fams!) We used a diamond from a ring that my grandpa Owen made for my grandma Marsha (who died from breast cancer before I was born). This ring was generously gifted to me by my Aunt Val. So thank you Aunt Val & Aunt Steff who also donated jewelry to the cause! The emeralds in the ring come from a beautiful bracelet that belonged to Lege’s Nana (who passed away last winter from  natural causes, 1when she was 92!). We love that the ring literally and figuratively unites both of our families.



In the spirit of our joint proposal I was set on also purchasing something that Lege could wear as well as a daily reminder of our ridiculous love. After all, it’s not fair that I get to wear this fancy ring and he has nothing to show for it. After lots of discussion I decided I wanted to buy him a nice watch of his choosing. Lege spent a few hours on the internet and then naturally settled on a vintage mechanical watch from the USSR that shipped from Ukraine.


We had no idea when the watch was going to show up, so I also bought him a pair of dope fancy boombox cufflinks just in case the watch didn’t arrive by the time we left for Cuba. Luckily, the watch arrived just in time.

Since we had pretty much eliminated the element of surprise from our engagement, we decided that we would each propose to each other at “some point” while in Cuba but wouldn’t tell each other our plans. The funny part of it, is neither of us really made a plan. I don’t have time to type it all out so you’ll just have to wait on that one!

We made a ridiculous engagement photoshoot, thanks to one of Lege’s friends from his abroad program from 2010.


Cuba Trip

It was amazing. Many stories and adventures to tell. Highly recommend going before Trump destroys everything good for the world. Being able to speak Spanish helps significantly. The pictures below are horribly out of order after I spent far too much time organizing them (and it failed to update) so deal with it. Ask us about our favorite parts when you see us in person! Here are the visual Highlights:



I started my first semester for the graduate portion of my program, where we learn how to be a Nurse Practitioner. I am LOVING it so far, even though I have to be reading constantly. I got my first clinical placement for the Adult/Gero Primary Care specialty at BU Dermatology, which has been awesome so far. I am enjoying the freedom and loving being able to see patients and perform my own physicals finally! Dermatology is vey complex  (“the skin is the largest organ of the human body!!!”)so I’m learning a ton every clinical and have been inspired to study up on my own. My preceptor is awesome and I generally feel less stressed than previous semesters. A few photos:


Women’s March Boston

The world has been a much scarier place ever since Trump was elected. It is so overwhelming sometimes I find myself reading the news in disbelief until 2am. I have to stop doing that. School and cancer has been keeping me busy but I am making sure to find time to resist these horribly sexist, xenophobic, racist, homophobic, anti-environment, anti-woman, anti-choice, anti-education etc… changes that Trump and the republican party is trying to put in place. I have never felt more sure that I wanted to be a Nurse Practitioner so I can do my part to offer high quality care to low-income and under-served populations. Also, attending the women’s march was the most hopeful I had felt in a very long time. Being surrounded by like-minded peaceful individuals, hearing Elizabeth Warren and others speak was inspirational and moving. Let’s continue to resist my friends. Here’s selected photos and signs from the women’s march in Boston. I went with Lege and Cassie! Big shout out to My Aunt Steph who knitted me a pussy hat before I even knew they were a thing!



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