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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.

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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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