Holy hell. What a terrible couple of weeks it has been huh? I’m not talking about cancer, I’m talking about the election results… On the contrary, I promise this blog post has nothing but mostly good news though I couldn’t write this update without sharing some of my thoughts on the election, which I have included at the very end.
Also, sorry for taking so long to update the blog. It’s the end of the semester so I am/have been up to my eyeballs in papers, practicals, and exams. If you are looking for more immediate updates you have my permission to harass me directly. Or ya know, stalk me on social media.
Scans, Scanxiety, and Halloween
You may recall in my last post that I was a cocky asshole and said that I wasn’t going to have “scanxiety.” Welp everything changes when you put on the XXL hospital gown, drink 1/2 gallon of vanilla flavored barium sulfate, lay on the freezing cold table, they strap your head down, and you enter the tunnel of excessive loud noises, weird burning sensations, and claustrophobia. Maybe it wasn’t scanxiety per say, but the PTSD of the last time I went through that very same experience, which was the day I found out I had cancer. Needless to say I was foolishly unprepared for the emotional toll that scan day took on me. Overall I was at the satellite imaging clinic for a total of 5ish hours to complete all the scans (CT of Chest/abdomen/pelvis and MRI of my Brain).
All that combined with the fact that my Halloween plans fell through and I was unable to wear my tiger suit in the scan resulted in me being a confused mixture of grumpy, sad, silly, hungry, and scared. When I got home I put on the tiger suit…
…and contemplated how creepy it would be for me to trick-or-treat alone/steal a toddler to trick-or-treat with and/or how unacceptable it would be for me to throw up the “C-card” if anyone gave me any funny looks. Luckily the city of Cambridge had one less freak on the street that night as I opted to sit home and pout on the couch/demand Aaron & Krissy send me pictures of Talia so I could live through them vicariously. Of course they pulled through and Talia nailed it so Halloween was somewhat salvaged after all.
Also I indulged in 50% off Halloween candy for the next few days, which usually helps. Also this hilarious exchange on what really happens to kids’ candy after Halloween, courtesy of newish parents Aaron & Krissy:
Okay, here’s some good news: All my scans were clear! While this is good news, it is not unexpected. To be clear, we (family & melanoma team) all anticipated clean scans as it would be highly unlikely to progress to stage IV in just 4 short months during treatment for a variety of reasons: 1 is that I have some good prognostic factors on my side like my young age (30 is the new 20) and female gender (finally, something to celebrate!). Also some data suggests a majority of recurrences for 3B patients happen between 2-6 years but this is data from patients over 10 years ago and only 50% of patients had adjuvant therapy which did not include the new drugs (like Ipi) – but needless to say, my chances of relapse increase as time goes on for a certain point, but I’m not worried about that right now and in conclusion yay, I still have no clinical evidence of disease! I will continue to get scans every 3-4 months just to be on the safe side, also that’s the protocol so we ain’t gonna mess with it.
***If you are interested in reading about my experience getting the scans, I have written more in-depth about it at the bottom of my Lessons & Tips page.
1st Ipi Treatment – Nov. 3rd
On Nov. 3rd I had my first Ipi infusion. I have to go in early to get labs, meet with my healthcare team, and once they make sure my labs are okay they send me on up to the infusion room. Things went pretty smoothly and there really isn’t much to talk about. They hook me up to an IV to start with normal saline. However, they don’t do a ton of hydration like they do with interferon because the drugs work pretty differently in that respect. The infusion itself was 90 minutes and I was probably hooked up for a total of 2 hours because we had to wait for some paperwork to go through before we could get the Ipi. Just like we predicted I didn’t have any acute side effects and pretty much went on with my day afterwards. Both my parents and Lege kept me company and I enjoyed visiting with my old infusion nurses. Later on that day I had my first appointment with my MGH dermatologist. Her name is Elena, so we bonded over our shared displeasure of people mispronouncing our names our whole life. Other good news: the dermatologist didn’t find anything suspicious looking so it was a fairly quick visit and I was on my way! Just like scans, I’ll be seeing my dermatologist every 3-4 months for skin checks to make sure Melanie hasn’t made any friends.
Ipi Side effects:
Up until this week, I hadn’t really had any side effects. Again, side effects can come at any time but the bad ones usually show up between 3-4th infusion. Monday night after my run with Lege, my back and legs were really itchy. I have sensitive skin so I figured I just needed to jump in the shower. The shower made it worse and I had Lege rub some moisturizer on my back. Everything was good until I woke up in the middle of the night with my back super itchy again. This has gone on pretty much every night this week. Different parts of my body are extremely itchy and it is usually the worst at night. I see Riley (my NP) every week to check in. The itchy “ipi rash” is a very common side effect, experienced by 90% of patients. It’s driving me crazy but it’s a small price to pay for a significantly higher chance of beating Melanie for good. I now have lots of special moisturizing lotion and I’m back to taking Benadryl at night and Zyrtec during the day (both antihistamines). Lege also got me a backscratcher from his work (they have all sorts of handy things there it’s crazy) which we lovingly refer to as my “other boyfriend”. It sleeps in bed with us and goes everywhere with me. I think I need to stop writing about the itchiness because I’m starting to lose it and it’s only 2pm. Other than that, I’ve been pretty good. My mood is still up and down at times but I’m working on taking better care of myself. Also, I mostly blame the fucking election.
Update: Saturday 11/19 I had my first night sleep without itching attacks and in general have been less itchy so the RTC antihistamines are doing the trick!
Also, should be noted the evening after my first Ipi infusion I went to my first ever crazy cycling class with Becca and Simmons. Jesus christ those people do not fuck around. It was a great workout and Simmons sported my tank. Also, I was wearing clip-ins for the first time and I couldn’t get off the bike at the end. Other than that, it was great.
My next infusion is scheduled the day before Thanksgiving (this Wednesday 11/23). Until then you can find me continuing to do school work and scratching my back, or my legs, are my stomach…you get it
Feel free to check out the Timeline page for future infusion dates and other noteworthy events in my near future.
Life Updates in pictures…
…because I have already gone over my self imposed limit on time spent writing/editing this post and because I haven’t started my research paper yet.
Boston Sweep Party – since Boston won all 3 divisions (Brute Squad for Womens, Slow White for Mixed, and Ironside for Mens) at USA Ultimate Nationals, our respective captains created a ridiculously detailed photo-scavenger hut party where we separated into mixed up teams and ran around Boston doing ridiculous things. Here are a few pictures of some things my team, OogahBoogah completed that were safe enough to go on the interwebs. Also, shoutout to the random couple I had to “scare” where I jumped out from behind a wall and shouted “oogah boogah” to get my team 10 points. I immediately felt guilty afterwards, though they were more annoyed than scared, but they walked away too quickly for me to rationalize and apologize. So if you’re out there…. I’m sorry. and also I have cancer so you can’t get that mad at me.
Hiking in VT this weekend and my friends being the most awesome.
***Update 11/21 @12:45 pm: feeling so thankful and full of gratitude to be part of such an amazing community. 99 Days of Ultimate Women is a movement started by women in ultimate as an effort to praise and promote strong female athletes and bring more recognition, appreciation, visibility and overall gender equity to Women’s Ultimate. Moments after I published this blog post, they featured me in a post and it warmed my heart. Please check them out, read the stories and support the movement that is very dear to my heart.
Thoughts on the Election and Health Insurance
The election day started off very exciting. I was bursting with pride when I voted for Hillary Clinton and I was expecting to dance in the streets with some of the strongest women I know later that night when things became official. Clearly I was naive and sheltered by my liberal bubble. I had no idea that there is so much hate in the world and I am still trying to process the ongoing news and events that just get more and more terrifying everyday. On November 9th I woke up in mourning. It felt no different than waking up on June 29th, the day after I was diagnosed with cancer. It wasn’t just a bad dream after all and now we have to deal with the reality that the whole world is battling a cancer named Donald Trump. Oh and what a coincidence that his wife’s name is one letter off from my own cancer, Melanie.
I think everyone should take the time that they need to process this. Some people were ready to action on day 2 and some people on week 2, some people are still mourning and that’s okay. But once you are ready, it’s time to mobilize. We must fight for the rights of those most affected by a Trump presidency.
Here is an article that provides a great list of Pro-Women, Pro-Immigrant, Pro-Earth, and Anti-Bigotry Organizations that need our help. Other than donating to these organization you can also call your representatives to tell them it’s unacceptable for a white- supremacist to be our new chief political strategist or that a climate change denier (Myron Ebell) has no business being the head of the EPA, or whatever other horrible appointments that have been made (and there are many). Some angel from heaven (named Kara?) made this amazing spreadsheet with all the numbers, call scripts, reminders, tips, even a list of why making phone calls works… literally everything you need to make a phone call in order to take action: We’re His Problem Now calling sheet.
Another thing we can do, that my lovely boyfriend Lege was the first to point out to me (while I was losing my shit swearing and fantasizing about punching Trump in the face) is to LOVE each other and fucking spread the love to everyone we can. We must “fight” for our rights, without violence, because violence only perpetuates the hate and the biggest issues we face today. So give everyone a goddamn hug and kiss and call your friends and your family and tell them that you love them. Hug strangers (I tried it last weekend and it feels excellent), hug police officers, hug the gas store clerk, hug your dogs, hug your teammates, hug your classmates, hug your coworkers, hug the people in your apartment building who won’t make eye contact with you, hug the person sitting next to you on the T (but maybe ask permission with those you don’t know well because everyone has their own personal set of boundaries), because we are all going to need a lot more hugs and love for the next 4 years, at least.
Here are a couple more articles that I enjoyed and/or made me feel empowered and/or inspired to action.
I initially thought that if Trump was elected, my health insurance was going to go flying out the window faster than an underage kid running from the cops who are breaking up a high school party. Trump has vowed to repeal the ACA (affordable care act), but of course he had no idea what the fuck he’s doing and spouts bullshit all day long so yeah. Repealing the ACA would leave ~20 million Americans without health insurance so it’s not something that can happen overnight. It turns out that the amazing state of Massachusetts has been working towards universal healthcare long before the ACA was in place – Mitt Romney signed a law for universal health care in MA in 2006. MA currently has the lowest uninsured rate in the nation at under 3% and Obamacare was modeled after the MA reform. So it seems that MA people with masshealth or medicaid or some form of subsidized MA state based insurance will likely be insulated from future destructions of the ACA. However, nobody really knows for sure, which of course leaves an air of uncertainty. For now, I don’t plan on leaving MA in the near future and neither should you, if you happen to be in a similar health/insurance situation to me.
If Trump is able to repeal portions of the ACA, the most vulnerable populations will be without healthcare and much more. Now more than ever, I cannot wait to be a nurse practitioner so that I can do my part to continue providing high quality health care for those that need it most.
Here are a few articles that were helpful for me:
Big thanks to my family and good friend/TEAMMATE, Vicky Negus who sent me some of these and many other helpful articles related to healthcare. Also shout-out to my own Mother (aka momschwam) who has been emailing like a madwomen with her other strong female friends, and been a voice of empowerment and a driving force encouraging women and Jews to organize and get motivated to do our part to stop the injustices that Trump promises to bring.
Thank you to everyone for your continued support. I appreciate every email, every text, every card, every phone call, every hug, every look of concern, every giggle, every everything. I also appreciate the patience. I know sometimes my mood is low and I may not have the usual goofy pep-in-my-step, or I may not respond to emails/texts right away or within 3 months but just know that it means so much to me and I hope to get back to you all eventually and I wouldn’t be where I am without all your support. Also thanks for tolerating my run-on sentences, general profanity, and cringe worthy misspellings.
stay sexy and fuck cancer!
Also travel safe this holiday and stay away from the malls. Also don’t burn your mouth on the hors d’oeuvres (even the mini hotdogs!) and ruin the rest of thanksgiving.
Schwambomb, Elana, schwam, Lany, etc.