Firstly I’d like to apologize for the delay in posting, I originally started writing this post like 3 weeks ago but all the craziness with grad school and prepping for Nationals got in the way. As I’ve been writing this blog I’ve been learning a lot about myself as a writer. One thing I’ve learned is that I am incapable of being brief. If you are looking for a succinct summary of where I’m at and what it took to get there, check out my Timeline.
Before I rewind back to 3 weeks ago I just want to shout that (this past friday) WAS MY LAST DAY OF HIGH-DOSE INTERFERON INFUSIONS!!!! I am officially FINISHED with the induction phase of immunotherapy, and I couldn’t be happier to stop getting stabbed in the veins. Big shout out to my infusions nurses who took care of me this past month!
Okay, so 3 weeks ago, back when the big news was that my liver was still being a huge bitch, I originally wanted to title this post “The Liver Strikes Back – The Phantom Menace” but Lege said that didn’t make any sense as far as Star Wars goes and is also a little misleading at this point so here we are.
On Monday (9/19) I was sitting with my parents in the exam room waiting happily for my Nurse Practitioner, Riley, to come in the room. She is not a particularly smiley person and when she finally entered, the look on her face was about as joyful as when my parents had to tell my brother and I that our childhood dog died the day before we came home from 2 months at sleep-away camp. RIP Jesse.
Anyway, Riley got right to the point and told me that even after a week off my liver readings were STILL not low enough to start treatment. One of them was currently 5x the normal limit, and per normal protocol they couldn’t restart treatment until they were at most 3x the normal limit. Again, I was unprepared for this news and in shock. Tears were starting to well up inside me, which distracted me from anything else she said for a while. I was so frustrated.
One downside of the clinical trial, is they have really strict timelines for treatment. The protocol is just to hold treatment if there is toxicity, which would mean missing 2 straight weeks of infusions. At this point Riley told me I had two options:
- drop out of the clinical trial and make-up the 2 weeks of missed infusions.
- Stay in the clinical trial but lose 2 weeks of infusions.
At first there was chaos because if I dropped from the trial then I would likely have to miss Nationals for infusions, so obviously I was not a fan of this plan, at all. I also was unsure what the implications of being off the clinical trial were.
In comes Dr. Lawrence to the rescue, as usual. He advises me to drop from the clinical trial because “they felt” that the induction phase (high dose infusions) were the most important part of the treatment and in order to have the best chance at really killing Melanie, then we should complete the 4 weeks of infusions. Dr. Lawrence also pulled some strings to rearrange my schedule so that I did not have miss Nationals, including scheduling one of my infusions on a Sunday in a different building. WHAT A GUY! Nothing about my course of treatment changes at all, I just have a more flexible schedule now that I am not on the clinical trial. I am still getting the standard treatment for stage 3b melanoma (interferon). The only downside is I am no longer contributing to science the way I was before, and I have a few less nurses/research people who’s jobs are to keep tabs on me. Not a huge loss at all.
Week 3 of High-dose interferon infusions: Thurs 9/22-Mon 9/26
This was the most mild week of treatment I had thus far. I am also posting about it 2 weeks later so it’s possible I am forgetting stuff. Anyway, I was able to schedule taking my medications just right so that I didn’t really have any acute symptoms (except for about 30 mins between tylenol doses thurs & fri). The only thing to note about this week was I had some really scary RUQ pain (essentially it felt like my liver was hurting). It turns out that it was probably nothing to worry about and it went away on it’s own in 2 days but it was a frustrating reminder that probably for the rest of my life I will have symptoms that pop up and I will always fear the unknown. Is it a new tumor? Is it the cancer coming back? Is this a bad side effect of interferon? This of course leads to evidence-based googling of symptoms mixed with reviewing scientific articles that lead me to nowhere except this conclusion: “fuck melanie.” They rechecked my LFTs and they were fine. We did discover thought that my white count was at 2, which is pretty close to being immunocompromised. However I spent the next 4 days without any privacy and I managed not to get sick, so that’s pretty dope. Here’s so pics of my week 3 adventures at MGH. Other fun things to note: I was getting an extra 1/2 a liter of hydration everyday to prepare for nationals. Please note picture of day 11: looks like Sydney was making a charitable visit to children less fortunate…
NATIONALS, Sept 29-Oct 2nd in Rockford, IL.
I posted about this on facebook, but I’m going to repeat myself here because it’s worth it. I was ecstatic to be able to go AND play in Nationals. My oncologist told me more than once over the course of treatment that there was no way I was going to be able to play in Nationals with interferon pumping through my veins. When he saw me before week 3 he knew there was no stopping me, and he gave me the green light, saying I was just simply “amazing.” They’ve never had a patient who was able to stay as active as I was. So off I went to join the other 28 pairs of neon shoes. I got into Rockford early so I could spend some QT with my Bro (Aaron), sister-in-law (Krissy) and my niece, Talia. We sang “wheels on the bus” 12 or 13 times and they helped me carb load before I caught a ride to Rockford with some of my teammates.
I’d had my last infusion for the week, 2 days prior to traveling. I had been feeling great at practice that weekend. But when I started to warm up for our first game on Thursday I felt different. I was getting dizzy tired very quickly. I immediately started to have a mini panic attack inside. I play on the D-line and can’t afford to get tired after just one sprint. I told myself this was probably nerves and tried to keep warming up. I made it through our 85 minute warm-up panting and grasping for air but I knew now for sure that Interferon was finally rearing its ugly head.
The winds at Rockford were real gusty the first few days, which turned out to be a blessing in disguise. Our coach decided we were going to play upwind/ downwind lines, which meant that I was mostly going to be on downwind lines, which usually made the points quicker for us. Anyway, towards the end of the first half of our first game vs Showdown I got my first taste of bookends (when you get a block on defense and then catch the score on offense in the same point) and things went great from there. Everyday I felt a little better than the last, and throughout the day my symptoms would dissipate some.
I realized later on after Nationals, that I was actually more upset about my symptoms that I initially knew. I was happy to be there and be playing, but at the same time I was very frustrated and upset that Melanie took away some of what I’d been working so hard for. I’d been a contributor all season long, and I felt I had sooo much to give to this team, and in the end even though most didn’t notice, it was still blunted for me and that really stung. At the same time, my core is already boiling – motivating me to come back better than ever, next year #neverenough . Regardless of all this, It was an amazing experience and I’ll go through the highlights below.
We won all our pool play games on Thursday allowing us to head straight into quarters on Friday. We beat San Francisco Nightlock by a bunch (I had 2 goals and an assist in that game) which launched us into semi’s for Saturday. However, our semis game wasn’t until 8pm. Saturday then became known as the (2nd) longest day (rivaling cancer diagnosis day) of my life. Our captains put together “Brute Camp” or what some of us sadly refer to as “Jonbenet Day”, which consisted of us yelling about what to watch, (mostly Bitterman and Kami) trying to convince everyone to watch some special on Jonbenet Ramsey and a confused Vicky got caught between conversations and accidentally asked if “she was ok”? No Vicky, Jonbenet is not okay #VYSSOB. Please keep in mind it was only 11am when this occurred. We still had 9 more hours until game time. The wifi was terrible so we couldn’t watch anything (except for when we used hot spot to watch Slow White win their semi’s game!) We continued our yoga retreat, thanks to Shira our very own Yoga instructor. In fact we did yoga every damn day. I like to joke that we are a traveling yoga team and sometimes we play frisbee when we have some downtime from all the fucking yoga (jk, love you Shira). We ate Brunch, we got into our buddy groups and competed ruthlessly against each other in water drinking games. My buddy group, the Jewish Hedgehogs, dominated in flip-cup of course. THEN came the best surprise of all: our rookies this season secretly re-wrote the lyrics to Mulan’s “be a man” (changed it to “Be a Brute”) and choreographed a whole song and dance and performed it for us on a stage at the AirBnB. I honestly started tearing up, it was the cutest, most hilarious thing. You can watch it all here
Other highlights include us winning Semi’s against Colorado Molly Brown. The game was streamed on ESPN3 and the announcer, Evan Lepler, read my whole blog and said some really nice things about me on the stream. I did not play very well but that’s why we have a badass TEAM. You can re-watch our semis game here. In case you have really been living under a rock, you might not know we also won Finals on Sunday, meaning Brute Squad are 2 time National Champions! We had a thrilling come-from-behind victory in which we were down 8-10 in a game to 12. We beat Seattle Riot in a double game point taking it 12-11. I was lucky enough to be on the field for 2 of those breaks. You can rewatch the finals here too. At the end of the game, the Riot captains mentioned me in the spirit circle and told me they had been following my blog and were rooting for me and even gave me a gift of Seattle Coffee, I think from on of their players coffee shops. It was really nice and makes me really happy that people are reading and enjoying my blog, and cheering for me to kick Melanie’s ass.
Pufhal Spirit Award
Finally, one of the nicest things was my team nominated me for the Pufhal spirit award and wrote really wonderful things about me. I was so honored and flattered to be nominated for this award as it’s a big deal in the ultimate community. The winner is supposed to represent a player not only leads by example on the field, but also gives back to the ultimate community off the field as well (and has demonstrated exemplary Spirit of the Game). Each team nominates one player from their team and then at Nationals, every team votes for 1 player to win the award (you can’t vote for the player that is on your team). The actual award went to Anna Nazarov, who is a player I have had the privilege of playing with (and winning Beach Nationals with #skeeahreet) back in 2015. So it turns out cancer can’t win you everything you want. BUT, Anna is a great player, a super nice person, and is doing great things for women’s ultimate and I couldn’t be happier to lose to someone like her. Congrats Maddog!
Nominating me for this award, was just one of the hundreds gestures of support my TEAM offered me. They wore their Schwam tanks at every opportunity, including after the national anthem and during awards ceremony. I felt and feel so much Love and support from my TEAM, I am a strong women, but the support of this incredible group of women (and 2dads) lifts me up and makes me feel unstoppable to Melanie and everything she throws at me. Winning Nationals is really just a nice perk. The support from my team also goes beyond just me, it touches and supports Lege (who was with me all through Nationals) and my immediate Family (who made the trip to watch Friday-Sunday). My bro wrote this really great post on facebook that gets the point across really well.
Here are handful of pictures friends and I took from Nationals!
High-dose Interferon infusions week 4 (Final week of treatment) Oct. 3-7th.
After a quick celebration in Chicago and super tasty Rosh-Hashanah dinner with my Family, Lege and I hopped on a 6am flight back to Boston so I could re-start my final week of treatment. Talk about culture-shock. I went into infusions wearing my medals proudly and it was hard to believe just a few hours ago I was watching my teammates take celebratory-nationals-winning -tequila shots. Treatment this week was rough, with the exception of meeting 3 players from the New England Patriots, WHAT A TREAT! It turns out they were there for breast cancer awareness month, and even though I don’t have breast cancer, they came to my corner of the infusion room and signed a football and chatted with me for a little bit. I tried to convince them I could teach them how to play ultimate (if you are reading this, Justin/ Brandon/ Jordan, the offer still stands!). The patriots posted a video about it and I also have these pictures that I look at too often.
This week I made a couple of mistakes that resulted in some acute flu symptoms: As soon as I got home Monday after treatment, I went to sleep. It was 5pm. I woke up just before 10pm with full blown flu symptoms (fever, migraine, chills, muscle aches). I took some more tylenol and went back to sleep for the night.
Tuesday 10/4 I was an idiot. There are cognitive side effects of interferon and this may be my first experience. My theory is that I didn’t have water on me when I went to take my tylenol so I put my tylenol in my pocket with the intention of taking it when i got to my water bottle. Well ADD took over and I must have forgotten to take it all together. I discovered this when my symptoms got worse in class. I had a fever, rigors, and nausea. I was starting to wonder why the tylenol hadn’t kicked in until I put my hand in my pocket and realized it was because I hadn’t taken it yet! Luckily it was a 4 hour class, so I was able to hang on the first 45 mins and make it through the class.
The rest of the week was more mild but I had had lots of nausea and dizziness. But now that I’m finished with the infusions I feel great and will be starting subcutaneous injections on Wednesday. I will be giving myself injections 3x a week for the next 11 months, or until toxicity. The symptoms should be less acute, but again the fatigue is expected to accumulate. I wish I had the time to sleep 12+ hours a day, but school is really piling up :(.
Huge thank you to my friends and family who took the time out of their busy days to sit through infusions with me!
This weekend I had the pleasure to fly back to Indiana to watch my best friend from Earlham get married to her soulmate (Elby and Tyler). Elby was one of my soccer teammates and my roommate our sophomore year. The reason I am writing about this is that Cancer has unfortunately touched her family in that it took her Father from her far too early (when we were Juniors in College). Through out the wedding they did little things and there were subtle details that kept him in our mind and hearts. It was beautiful and brought me to tears during several moments. It was great seeing some of my other Earlham friends who I haven’t seen since I left Indiana in 2007 and it was a great way to get back in touch. Also huge thanks to my freshman year roommate Katie who picked me up the from the airport and shuttled me around. Loved meeting her 3 kids!
Welp, I think that about covers the last 3 weeks. If you wanna find me I will be covered in books and papers trying to keep up with the never ending rigor of graduate school. I always say I’m gonna post shorter updates, but that hasn’t happened yet. So until next time….
Fuck Cancer & Love Hard,
Elana, Lany, schwambomb, etc.