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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).

 

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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: https://www.youcaring.com/ryan-west-450543

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.

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:

Recap:

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.

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Life Updates:

Engagement!

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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.

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Ring

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.

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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:

 


School:

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!

 


Updates:

congrats you made it to the end! If you are looking for health updates, go to the timeline and scroll to the bottom or until you see the pink text for the most up-to-date info.

Update #7 – Interferon Treatment Week #2

I came out of week 1 of treatment feeling almost guilty about how well I was doing on interferon. Like I said last week, I felt suspiciously like Interferon was having a rare paradoxical effect on me and was actually giving me super powers! At the very least, I wanted to take advantage of my energy while I had it. Over the long weekend we did juuuuust that.

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