Just Keep Swimming: Update March 2024

Hello! Greetings from cancer land. I am currently hooked up to my 3rd infusion of nivo/rela (note it has now been 2 days since I started writing this post and published it) and so far I haven’t exploded so things are going alright. The last few months have been… pretty awful, but mostly unrelated to cancer. Jordan got serum sickness from amoxicillin shortly after his 2nd birthday – more on that later but it was absolutely terrible for everyone involved. He’s doing much better now thank goodness. Then I succumbed to a horrible virus that had me hacking up what’s left of my lungs for 3+ weeks. Then when I was finally healthy, I had an unfortunate collision playing goaltimate that resulted in me snapping my ankle in half and am now on crutches for the next few days and off the frisbee field for the next few weeks. More deets on all that later.

Infusion 1

After the first infusion I felt great/normal… for a week. The 2nd week I noticed some fatigue but nothing too terrible. The 3rd week I had a headache for the entire week. At it’s worst I thought I was going to vomit from the pain. At it’s best it was just a dull ache. I reported it to my cancer team and nobody was concerned, and then magically after 7 straight days of headache, it just went away. I prepared Lege with the signs and symptoms of stroke and we joked about me being a “potato wife” in case it didn’t get caught in time. God I love dark humor. I then had 2 days of unrelenting mild abdominal pain but that also went away on its own. Other than that I had some mild joint aches and pains. Injuries from my past came back to haunt me for brief moments in time (they prepared me for this). It was kind of fun being like..”why does my left elbow hurt?” And then remembering that time I sublexed it snowboarding on my 23rd birthday.

Infusion 2

I came into the 2nd infusions with just the slightest tickle in my throat, knowing damn well that I was about to be blown to bits by an upper respiratory illness. I hate being right. I plowed through the first week of nasal congestion, sore throat, and cough but when I woke up on day 10 with a mild fever I started to worry that may this was turning into something more serious or maybe I was having side effects from treatment, masked by my illness. I was wheezing (which I have never really done before) and I was waking up in the middle of the nights coughing for an hour before falling back to sleep surrounded by cough drop wrappers. I almost panicked and went to the ED before remembering I could call the on-call provider at the cancer center. Thank god I did because they were able to fit me in at the infusion center where I got fluids, bloodwork, a chest xray, and some inhalers in just 3 hours! Ultimately I was stable and decided it was just a bad virus and nothing more serious. They wrote me an Rx for sizzerp so I could sleep through the night and that was that.

infusion 2

sick visit

I have definitely been feeling more fatigued, wanting to sleep more and struggling more during my workouts, which, for anyone that knows me, knows it fucking pisses me off. I have been working really hard lifting and doing HIIT workouts to stay in top notch for the Portland Rising season (I’m playing pro women’s ultimate again btw). Hoping this next month goes better, but nobody really knows how it will effect me

Jordan’s Serum Sickness

Shortly after Jordan’s 2nd birthday (in between infusions 1 and 2) things started to go down hill. I noticed Jordan started to get a small rash at the end of a 10 day course of amoxicillin for a double ear infection (that was fun lol). The tiny rash quickly progressed to a full body rash with a high fever, swelling, joint pain, and extreme itchiness. Needless to say Jordan was miserable. We whisked him off Boston Children’s right away. We entered the waiting area guns blazing and by that I mean Jordan was so hysterical he projectile vomited all over both of us. Nobody even batted an eye. As he continued to spout rancid milk I had to ask one of the nurses for “a little help please”. Long story short Jordan had a somewhat uncommon delayed immune mediated reaction to amoxicillin, called serum sickness. The news got worse as this was not something we could give him medication and make it go away. We basically just have to wait until the amoxicillin was out of his system – which took about 10-14 days. After we left the hospital his rash continued to get worse and the swelling was so bad his hands and feet were turning purple and cold. The following days were just sad. Jordy was unrecognizable and he had an aversion to all of the medicines that would help his symptoms and stopped drinking milk even. We brought out all the big stops – ms. Rachel, bluey, finding Nemo, gatorade, pedialyte, ice cream… but nothing worked. He was just miserable. Thankfully he’s finally doing much better. His skin is still sensitive- if he gets a tiny scratch, it blows up but hopefully that will go away over time. Needless to say, he will never be getting amoxicillin again.

The great ankle explosion of 2024

Finally things were getting back to normal… then on this past Saturday I was playing my treasured weekend goalty when an unfortunate collision lead me to absolutely destroying my ankle. I heard a snap as I rolled it with my entire body force and crumped to the ground writhing around wishing it was just another vivid nightmare. The poor young player who I collided with felt so bad, and then when she was helping me get to my car another teammate asked about my infusion the following day. She was like “infusion for what?” So I had to break it to this poor girl that she injured the cancer patient lolol. I went to urgent care to get an xray and according to them, no broken bones. I am hoping there’s no torn ligaments but would need an MRI to be sure. My amazing oncologist took one look at me and was like – alrighty lets send you to an ankle person. I already have an appointment scheduled for tomorrow (Friday), which knowing the health care system, is lightening fast. I couldn’t walk well without crutches for the first 2 days but I am doing much better now and am even able to continue workouts on the peloton and ride my bike to work (shh don’t tell my mom). I’ll get more news tomorrow at my appointment but I’m expecting to be off the field for 3-6 weeks.

Moving Forward

Hoping this cycle is less adventurous than the last one. According to my oncologist the risk of having a serious autoimmune side effect goes down if nothing happens after the first 3 infusions so fingers crossed for that! Also I will be getting my next scans early April, which will be big because it will be the first time we can tell if the treatment is working or not. My understanding is that we will continue nivo/rela for a year as long as the nodules stay stable, shrink, or disappear. Here’s hoping those mother fuckers GTFO. For now we will continue to just keep swimming…

Scan Update & First Treatment

Baseline scans before treatment

Last Friday Jan 12th 2024 I had baseline scans (Brain MRI & CT scan of abdomen, chest, and pelvis) before starting treatment. My last set of scans was only a couple months ago so I wasn’t expecting much change… At my previous scans my largest tumor (the one that was biopsied) was 11mm. Now it is 15x13mm, so a surprising amount of growth (to me anyway) – the radiologist called it “stable” but I’ve never had 4mm of growth in a 2 month time period so I was a little perturbed. There are also now 2 other lung nodules – confusing because one of them has never been mentioned before on scans but the radiologist notes that they are slowly increasing in size one is 4mm and the other is 5mm. He also mixes up the location of the nodules throughout the report so who knows how much sleep this guy got before writing it.

They also found a new small retroperitoneal nodule that is 3mm. I asked Dr. Lawrence if he thought this was also melanoma and he said they can’t exclude it. So this all likely means that we are no longer dealing with a solitary metastasis but have a few lung nodules and now this other mysterious nodule. Not gonna lie, was kinda shocked when I got this news. Fortunately, it doesn’t change the plan, which is systemic treatment with two kinds of immunotherapy. I was at work, inbetween patients when I got the news, so not much time to process lol. The next day I started immunotherapy.

First treatment of opdualag

Sooo yesterday Weds Jan 17, 2024 I got my first infusion treatment with my new immunotherapies. They are a mix of 2 different immunotherapies – one of them is a PD-1 checkpoint inhibitor called nivolumab (nivo). The other immunotherapy is called relatlimab (rela) is a Lymphocyte activation gene-3 inhibitor. It is almost always used in combination with nivo to treat melanoma. Together these immunotherapies are called opdualag. But the cool kids (aka my treatment team) just calls them nivo/rela. I just read on Wikipedia so jurys still out if this is accurate or not but they make the drugs from chinese hamster ovaries?!?

I will have one 30 minute infusion every 4 weeks for a year while it is working and get scans about every 3 months. You’d think I’d be in and out with just a 30 minute infusion but infusion days last about 3-4 hours from start to finish because I have to have pre-treatment labs, meet with my oncology team to make sure It’s safe to get treatment, then they have to order and mix the meds, find a vein etc… so it all takes a while.

I had a teaching session where my oncology NP (still Riley) spent about an hour telling me about possible side effects of treatment. I did take some notes but I also did a lot of blacking out lol. The most common side effects are joint pain, fatigue, and rash/itch. If you all remember my last immunotherapy back in 2016, I was treated with Ipi that has left me with incredibly itchy skin, worse in the winter. I am scratching my legs as we speak, so this is likely going to get worse and I already have 2 types of skin cream on my bedside table so I am PISSED about this.

Immunotherapy is often way more tolerable than chemo – there is less fatigue, I won’t lose my hair, and I won’t have to worry about blood counts or mouth sores.

The other side effects are more serious, auto-immune side effects. My young and robust immune system may get over excited and start attacking healthy any organ system in my body. According to my oncologist most common sites are lungs, liver, and bowels. There is about a 20-30% chance I have one of these more serious reactions. Since it can still attack any organ system they want me to report any symptom I have out of the ordinary. It has only been one day since my first treatment, but let me tell you boy am I paranoid about every feeling that I feel lol. Also basically all Ashkenazi jews have IBS so it’s going to be difficult to tease out what is just my jewishness vs what if my immune system is attacking my colon. Luckily most of these side effects are reversible if caught early – hence the frequent check-ins. Some side effects are permanent like if it attacked my thyroid or pituitary gland, or rarely I could end up with Type 1 Diabetes!

Anyway, here’s to hoping nothing too bad happens. I still plan to carry on with life as normal. I even worked a half day at work before heading into my first infusion (which honestly was a questionable decision). I plan to play as much ultimate as possible – so hoping to play pro this winter/spring and then club this summer/fall. Gotta get it all in before my body becomes completely useless ya know. I told my colleagues at work and mostly I work with women old enough to be my grandma so they are all “praying” for me and giving me hugs out of context lol, it’s very sweet.

Lege and I are doing pretty okay. It all seems very surreal to me. I am still waiting for it to sink in or to have some big cry, but nothing so far. My new favorite thing to do is say sweetly to Lege: “i’m dying” and then we both giggle uncontrollably. This morning when I decided to bike to work (I have been driving the past 2 days because of ice) he reminded me to be careful because even though I may be dying, I’m not dead yet and we want to keep it that way lol. So basically I am really into dark humor right now, so suck it up because I will letting them cancer jokes flyyyy.

I’ll end on one cool fact – My very first cancer infusion nurse came to visit me during my first new treatment. TBH we have been trying to get together since the pandemic but couldn’t get it together (my fault) until now. Daunielle is the best and I’m so lucky to have had her as my nurse.

Anyway, day 1 post treatment and nothing new except a newfound sense of body paranoia and itchy legs. I’ll keep y’all posted of course. Next treatment is Feb 16th!

The Bitch is Back ( 7 year update)

I know I know it’s been 3 years since I last updated this blog. I thought I was done with Melanoma… but if you hadn’t figured out by the title of this post, I’ve had a cancer recurrence. I will get into those details shortly but a whole lot has happened over the last 3 years so I will summarize below. Also feel free to check out the Timeline, which has been updated with a bit more detail. In addition, I have been posting regularly on my Instagram since this all started for more of a play by play.

If you are new here – I was diagnosed with Stage IIIB malignant melanoma in June of 2016 after having a misdiagnosis in 2010. I was treated with surgery and 2 forms of immunotherapy – Interferon (no longer used) and Ipilimumab. Ultimately I had a drug reaction to ipilimumab and had to stop treatment in 2017. I had been cancer free until September 2022.

Quick timeline review since last post

2019 – I won my last national championship with Brute Squad.

2020 – I got pregnant with my daughter Zoë. Sadly she died inside of me when I was 8 months pregnant for unknown reasons. I delivered her stillborn on August 22nd 2020 in the middle of the pandemic. Her death was far more devastating than cancer ever was or will be. It changed me to my core and I will never stop missing her. I spent a lot of time writing about grief since then – see my Instagram for more details.

2021 -developed subacute thyroiditis, which may have been a delayed immune reaction to previous treatment or from being postpartum
– got pregnant with my son Jordan

2022 – January 29, 2022 – gave birth to my son Jordan, alive and healthy. Developed pretty severe postpartum anxiety related to the trauma of Zoë’s death.
September 2022 – I have my first set of scans since before becoming pregnant with Jordan. We find a new 7mm nodule in the the right middle lobe (RML) of my lung that is suspicious for metastatic melanoma.

October 2022: I have a lung biopsy but they miss the nodule and the biopsy is non-diagnostic. we can’t start treatment without definitive diagnosis. We continue to watch an wait every 4 months until the nodule gets big enough to biopsy again.

Nov 2022 – Sept 2023: The lung nodule in my RML grows to 11mm. Smaller nodule in my RLL is now 4mm.

Nov 2023: 2nd attempt to biopsy the nodule. Biopsy confirms metastatic melanoma. I have stage IV cancer.

Present Day

Turns out when you have stage IV cancer, people move quick for you. After consulting with my fertility doctor and oncologist, we decided to start fertility preservation by freezing embryos since I’m going to be 37 tomorrow and will be starting a year of immunotherapy and who knows what the future holds. This also allows us to do genetic testing, as we found out I may carry a gene that increases risk of melanoma and kidney cancer. 

My fertility doc had me start IVF drugs right away, which involved 3 different drugs injected into my belly on the daily. I was able to continue working out until about 1 week ago, when just regular walking started to be uncomfortable (at one point I had 18 follicles floating around). I had what felt like continuous monitoring last week with transvaginal ultrasounds (just as uncomfortable as it sounds) and blood draws that involved an especially aggressive phlebotomist stabbing me so hard I was left with a giant bruise. 

Anyway, I had the egg retrieval on Tuesday (Dec 19th), where we got 15 eggs. 13 were mature enough and then 8 were successfully fertilized to form embryos that we froze for future schwambabies. Everyone keeps telling me this is good, so I feel happy about that. I feel like I have just been going through the motions – like it hasn’t hit me that we basically harvested our future children a few days ago. Science is like really fucking cool. Also shock is a hell of a drug.

Not to be outdone, Lege passed out during his blood, lol. He’s fine. So glad I’m the patient and not him.

After the retrieval I slept for 5.5 hours, woke up for dinner where I developed a terrible migraine and then went back to sleep for the night. Shoutout to Lege and Tutu for taking care of Jordy while I was unconscious. 

I am so happy to be done with the IVF process. Lege was prepared for hurricane schwam but recent reports were that it was a dud lol, so I wasn’t as hormonal as we thought. However, 2 days out and I’m still feeling quite bloated and uncomfortable. I just want to be able to play frisbee again, so who knows, aftershock schwam might just appear from forced sedentary life. 

Just got the call from my oncologist yesterday that we will repeat scans January 12th, have a few teaching sessions related to the new treatment, and start infusions Jan 16 with Opdualag. Opdualag is a combination of 2 immunotherapies (nivolumab and relatlimab) that work together to activate my immune T cells to fight the cancer. Unfortunately sometimes this can cause autoimmune reactions (like last time with my liver and thyroid) so here’s hoping that doesn’t happen, at least for a while. Since I am young with a robust immune system, some of these reactions can be serious – this is what I am most worried about.

I think as I am writing this post, the reality of the situation is starting to hit me. Previously, it has felt like nothing had changed and I was kind of anxious that I wasn’t feeling more anxious lol. Now I’m feeling annoyed, frustrated, sad that we have this huge bump in the road. I’m scared of the side effects of treatment. I’m scared that I won’t be able to play ultimate. I’m scared that I won’t get to be the mom, partner, friend, daughter, NP that I want to be. I’m scared that my mental health will deteriorate. I’m scared that the treatment won’t work and we’ll have to do surgery. I’m scared that my parents are reading this and are worrying too much about me (I hope they laugh when they read this, because I’m FINE, GOSH).

But I am also so grateful for so many things and people. I have the best community who has shown up time and time again for me and my family (UGH I’M SORRY). I’m terrible at making plans so I just ask that you please forgive me and keep texting/calling me because ya girl has been off her ADHD meds for a few years now. Anyway, thanks for reading and I’ll try to keep y’all updated. Much love, and fuck cancer, and fuck Melanie – that dirty, dirty whore. 

And because my son is the cutest – please enjoy a few recent photos

3 Year Update, miscarriage, and drunk drivers…oh my

As you can see by the title, 2019 has been a year of ups and downs thus far.

3 Years Cancer Free!

The best news though is that I had my 3 year cancer scans early July (only CT scan of abdomen/chest/pelvis this time) and everything came back clear! June 28, 2019 marked exactly 3 years since my diagnosis. It feels simultaneously like treatment was a nightmare of the distant past, but also somehow still so fresh. Honestly, being a cancer survivor has been the least of my struggles so far this year. Finishing up my first year being a Nurse Practitioner has kept me on my toes. I’ve been consumed more by my patients’ health than my own. I really only remember that I in fact had cancer whenever I’ve had to care for the few patients of my own dealing with a new cancer diagnosis, which has come in handy by the way. I’m still loving my job and have been thoroughly enjoying moving on with my life.

Pregnancy & Miscarriage (caution – detailed)

So now Id like to talk about another somewhat taboo subject. Miscarriage. Before I started treatment in 2016, Lege and I saw a fertility specialist at the MGH Cancer Center. Chemotherapy is known to cause infertility in women. Chemo is mostly ineffective in treating melanoma, and as you might remember I did NOT have chemotherapy. I had 2 different treatments, generally known as Immunotherapy. Immunotherapy is so new that there hasn’t really been any studies on how immunotherapy might affect fertility. Theoretically it should not interfere based on the mechanism of action of the drug, blah blah blah. They do know however, that some women go on to have healthy babies after immunotherapy. Alas, I had some fertility testing and the results were good, not great and the doctor said we should start trying in the next 2 years, because that clock is tick tocking and not in the fun Ke$ha kinda way.

So Lege and I pulled the goalie in early May of this year. I’d had a mirena IUD in for pretty much the entirety of our relationship. Based on the info we’d already had and that we were told it usually takes a couple cycles after having an IUD removed, we weren’t expecting to get pregnant right away. The ideal scenario we had pictured was that I would try to play another Brute season and get to work that winter. Welp, 5 weeks later I hadn’t gotten my period yet and the previous night had a really vivid dream that I was pregnant so I started to get curious. I took a pregnancy test and BAM. To my surprise, the test turned positive immediately. I was shocked, I didn’t believe it. I thought, this must be a faulty test, so I took another one. That one was positive too.  So needless to say I made Lege drive to our summer league game that night while I googled the sensitivity and specificity of urine pregnancy tests. Turns out they are super accurate and my disbelief shifted to complete and utter elation. I have always wanted to start a family and always had (ir)rational fears that my body wouldn’t be capable of it. Lege was also excited and trusted the positive tests from the beginning. I should mention at this point I hadn’t really had any early pregnancy symptoms other than some fatigue and muscle cramping I’d noticed at Brute practice.

The next day I had the blood test that confirmed I was in fact pregnant and based on my hcg levels (pregnancy hormone) they estimated I was probably around 5 weeks pregnant lolz. Everyone was surprised including the fertility doctor. They scheduled my first ultrasound around 2 weeks later. The very next day I immediately started have those awful early pregnancy symptoms (nausea, bloating, breast tenderness, fatigue, etc). There is a lot of taboo about telling people you are pregnant before you reach 12 weeks. That is because the miscarriage rate is highest before you reach the first trimester (around 20-25%). Welp, my thought process was that I would want people close to me to know if I had a miscarriage because I would want/need support. So I told Brute at practice the following week and my family that weekend for Father’s day.

2 weeks came and went and Lege and I drove to Boston for my first ultrasound. I was extremely anxious. Immediately I recognized the concerned face of the NP and the ultrasound technician. There was no visible embryo in the yoke sac – just an empty yolk sac, which usually provides an embryo nutrition in early pregnancy. Based on how high my pregnancy hormone was there should be an embryo forming so this is considered abnormal.  The MD came in to confirm that this was what is likely called an anembryonic pregnancy and eventually my body would figure it out and I would naturally miscarry. To add more fuel to the fire, this all happened the day before my cancerversary.

They scheduled me to come back in a week for more testing. This was one of the worst weeks of my life. It felt like my body was playing a sick joke on me. My pregnancy hormone continued to rise but we knew there was no baby growing inside of me. I yelled at my own body “why don’t you just figure it out already!” The nausea and fatigue and bloating were just constant reminders that my body had failed me yet it didn’t even know it yet.

The next week the ultrasound was the same, still no embryo. My pregnancy hormone was still rising so the doctors were worried about a possible ectopic pregnancy. I had to have a biopsy to confirm there was no ectopic and to help induce a miscarriage. This was one of the most painful experiences I have ever had, and I have had my leg broken in half before. Lege almost passed out and had to lie down on the clinic floor in the middle of the procedure.

I was devastated. Later that night when I was laying on the bathroom floor in excruciating pain I thought to myself, “this is worse than cancer.”

I felt like I had already suffered enough in my life with having cancer and breaking so many bones. Having this miscarriage made me realize that there is no quota for suffering. I am not invisible after cancer, bad shit can still happen so I should probably make the best of it.

So of course the very next week I went back to Brute practice. My TEAM was incredibly supportive throughout everything. I honestly don’t know what I would do without my family and Brute and the support of the Ultimate community. One of the many reasons I am so glad to have this community. Of course my family was amazing as well.

There are several silver linings to this shit storm.

1. This kind of miscarriage is unpreventable, meaning there was nothing I could have done to cause or prevent it. It’s a very common type of miscarriage and it doesn’t come with the risk of increased chance of miscarriage in the future, like some other types of miscarriage.
2. Originally after speaking with my OBGYN she advised not to play competitive ultimate after the first trimester which would have brought me right before the US Open. This would have meant I would miss a majority of the season (a sacrifice I was willing to make for my first born child, duh). So now that I was no longer pregnant, I could play through the season! There’s nothing I love more than drowning my sorrows in time spent sprinting around an ultimate field with my best friends trying to win national championships.
3. Better family planning for the future.
4. opportunity to raise awareness about miscarriages – I knew the stats that ~20-25% of women have miscarriages in the first trimester, but I didn’t think about the actual numbers. That is A LOT. Why don’t more people talk about it? My guess is because it is deeply personal and people feel guilty even though it is extremely rare for it to happen because of something they even had control over. However, when I was in my darkest moments, it was incredibly comforting to know so many people who have gone on to have families have dealt with miscarriage. I felt VERY alone when I was experiencing mine at first until people started to share with me their own stories. So here I am sharing mine in hopes that it will bring some other people comfort. I of course haven’t gotten pregnant again and don’t have a family yet and am terrified of having other miscarriages. But knowing that there is hope is extremely helpful.

The US Open

About 3 weeks after this ordeal was the US Open tournament. Prior to the tournament I had not felt like myself as a player. Because my pregnancy hormone was so high it took almost 6 weeks for it to drop back to normal. While it was high I honestly felt like shit out on the field. I felt tired, slow, and was bloated. I wasn’t sure how the US Open was going to go and I was more nervous than usual.

Well if you followed Brute at the 2019 US Open then you would know that we won. I also personally had one of the best tournaments I’ve ever had as an elite ultimate player. It was such a fucking good feeling to come back from the miscarriage shit stronger than ever. Fuck you, suffering, I won’t let you win.

Nationals 2019

When I started writing this blog post I was on the way home from winning the US Open. As I type this now, I am on the plane to San Diego for USA Ultimate Club Nationals. It’s been a season of ups and downs but I am so fucking ready to get out on that field with my TEAMmates and win the damn thang.

Other Life Updates:

-Still working as a NP and loving it, despite my schedule increases (now scheduled for 18 patients in a day and this time last year i was scheduled for 6).

-Got to speak at Brandeis with IMPACT Melanoma to share my story and raise more awareness

-Returning to Camp Koru as a co-leader again in November to help lead another aurf based young adult cancer survivor retreat!

-3 months scans are due in November

-I’ve had a few clear derm appointments since I last posted.

-been to a few amazing weddings and spent some good time this summer with family and friends

-Lege and I celebrated our 1st anniversary. Disappointingly the cake did not taste as good 1 year later. I recommend y’all eat that shit right away.

niece’s

niece’s

1st anniversary

icecream after miscarriage

Shira’s Wedding

1st anniversary

niece’s

Shira’s Wedding

 

That time I got hit by a drunk driver

Side note, for the first time since maybe ever, something other than cancer almost killed me. Late April I was driving home on a rainy Monday night from coaching at Brown. I was getting off 95 N (exit 29 for any of you Rhodies) and my light turned green to turn left at the oncoming intersection. As I was approaching the intersection I could see a big SUV running their red light going at least 50mp (in 25). I obviously stopped and layed on my horn to express my disapproval. Finally I started to slowly make my turn (my light was still) green and then BAM. I got blindsided by ANOTHER car (likely chasing the first car) that also ran the red light and clipped the front of my car, taking off the entire front bumper. They lost control of their car and ping ponged across the intersection, finally coming to a stop at a utility pole like 20 feet away. At first I was worried that the other driver might be seriously injured, because her car was completely totaled. But before I could even get out of my car, she jumped out and started screaming at me belligerently… and all I could say was “ummm you ran a red light and hit me soooo glad to see you’re alright.” Luckily there were witnesses who came to my aid, we called the cops, and the driver actually admitted fault to me. As I was taking a picture of her phone screen which had her car insurance information in it, she received a text from a friend. I didn’t think twice about it but when I checked the photo 2 minutes later the set that she received was from a friend and it said “DON’T TELL THEM YOU WERE DRINKING.” It all immediately made sense to me, why she was driving so recklessly, why she was initially screaming at me like a psycho. When I spoke to her next, I could then smell it on her breath. As I was speaking to the police officer I mentioned that I though she might have been drinking, and he brushed it off and was like yeah I don’t think so. I then showed him the photo and he still wasn’t convinced. I was like, I really think you should breathalyze her but at that point I just wanted to go home. I was shaking from the trauma of it all and it was getting late. As I was leaving I overheard her shouting at the cop that she “definitely hadn’t been drinking.” Had I been out any further in that intersection, we both might have been killed. Obviously her insurance took full responsibility for the accident and Mochi got a nice new face lift. However a couple months later we got a court summons because the other driver was contesting the ticket the officer had given her. If I didn’t show up to court she might have gotten off free. She was never charged with a DUI. Both myself and the 3rd party witness went to court. I had planned to make a statement to the court but the bitch actually didn’t even show up. I got to give the cop my 2 cents (he was extremely defensive) but pretty sure I got my point across. Anyway, don’t drink and drive and wear your mother fuckin seat belt.

 

2+ Year Update (March 2019)

Hallo friends! It’s been so long since I’ve updated this blog that I have practically forgotten how to edit this site – yikes! Things have been good and busy – REAL busy. Honestly 2018 was the busiest year of my life and I don’t think I’ll ever beat it. But before I get to the exciting details of the last 11 months of my life – I’ll get the obvious out of the way…

Cancer Update:

Since my last post I’ve had 3 sets of scans (4 months apart). On June 18, 2018 I had my 2-year scans which included full body CT scans and a brain MRI. The yearly scans are always emotional and I can’t help but reflect back on D-day (diagnosis day). Luckily I had a lot of other stuff on my mind that week: The day before my 2-year Cancerversary I took my Nurse Practitioner Board exams, and on my Cancerversary I had a video interview with the place I (spoiler alert) now work for. Anyway, my scans were clear, I passed my boards and secured my first NP job. Yay!

My next set of scans were October 30, 2018 – these were just full body CT scans. These scans were also clear. However, the week before my scans I had some new concerning headaches that were different from my usual headaches and lasted for 1 week. It was the week before Nationals and a few weeks into having my own patient panel at work. After telling my oncologist about them he said if they came back we should get an MRI but good news, I haven’t had one like that since then. For now I’m gonna chalk it up to just a weird migraine induced by the stress of my new job and nationals.

About 2 weeks ago I had my most recent set of scans – full body CT scans and brain MRI, and those were clear as well! At this point I am lucky enough to have a life full of wonderful humans (and other people’s dogs) and a job that is rewarding and equally challenging everyday. After 4 years off I have started coaching college ultimate again (shout out to Brown Disco Inferno!) so I almost don’t have enough time to think about cancer, and that’s how I like it. The only time I do, other then when I’m talking about it are when I have any weird symptom. For cancer survivors and patients alike – any symptom out of the ordinary could be a potential sign that cancer is back. Since I have a health science background I am usually able to quell those nerves pretty quickly but it’s a reality that cancer survivors have to deal with on the regular basis. Weird headache? Could be brain metastasis (melanoma loves the brain). Trouble breathing? Could be lung metastasis (melanoma also loves lungs). For a while I was having back pain near the site of my surgery which makes me nervous for cancer recurrence.  Lately though, I have been doing great. No weird symptoms and no scanxiety.  Like I said, my life is rich and busy and I’m doing my best to just live it. For those survivors that are struggling – I highly recommend keeping your life busy with hobbies, work, whatever you are capable of. For me – the more free time I have – the more time there is for my brain to wander and when it wanders it gets lost in scary, negative, fearful place. That’s not to say I don’t deal with my emotions, because I do – I just know for me it’s better to stay busy and move on with my life.

The only other thing that I deal with during scan time that I was afraid to admit for a long time is that when I get the news that my scans are clear, I do not feel relief. For a while I also felt guilt that I did not get these feelings of relief that everyone (including myself) expected me to have. Through therapy and my own soul searching and reflecting I realize I don’t have feelings of relief from clear scans because I am traumatized from all the times I was told “you do not have cancer” when in fact I did have cancer. If you know my story then you know I was misdiagnosed more than once. So for me it’s not really scanxiety that get’s me it’s the PTSD of having been failed by medical science in the past. When I was diagnosed I was completely blindsided because everyone had been like “yeah it’s totally not cancer – you’re totally fine” and then “whoops.” So in a way I think my brain is always on high alert, always skeptical of these “clean” results so that if cancer does return, I will be mentally prepared to kick the shit out of it and I won’t be blindsided again. I know this is a coping mechanism. I’m also keenly aware that melanoma has a tendency to lie dormant and then recur 10+ years later (yes dad, I know this is rare) but really rare things have happened to me more than once so that’s where I’m at. Anyway, I have found productive ways to deal with these emotions that I will get to later – but if there are any other cancer survivors out there who don’t feel like throwing a fucking party every time you get a clean scan, you’re not alone.

I’m also aware there are people out there who do not even have the luxury of receiving clear scans, that some people are just hoping for “stable” scans and that there are countless people out there that have lost their lives or loved ones to cancer and hearing me say things like this probably makes me sound like an ungrateful asshole. I hope that is not the case. I am very grateful for my health, that I’m able to continue living my life physically unscathed, and that I have had a really remarkable support system to help me get through all of this. When I started writing this blog I promised myself I would be transparent about my feelings to give others a look at what cancer patients and survivors go through. I also think it’s important to continue to acknowledge that most cancer patients and survivors (85% according to this UpToDate article) suffer from PTSD or other nonspecific psychological distress, and this is an area in the field (of cancer care/survivorship) that needs improvement/research. A lot of people think that you have to go to war or have nightmares to have PTSD and that is not the case.  In a couple of days I will be speaking with a social worker at a cancer center to help give insight on a young adult survivorship program that she will be leading – and I will be talking a lot about PTSD. Yay for turning my shitty experience into something better for others!

Dealing with my trauma

The other day I was telling my co-worker about my cancer story (she asked) and she asked me a great question: How do you do your job now after the medical system failed you so many times?

The answer is easy – my cancer diagnosis is the single best motivator to be a better health care provider. Being in primary care is great because I can catch things early, I can educate my patients to wear sunscreen and check their moles and have self body awareness, and I will never blow off a young healthy-appearing patient with an abnormal finding just because she appears young and healthy. I can advocate for my patients and I never deliver difficult news without a damn good plan of attack.

A couple of weeks before my last set of scans I received a biopsy result for one of my patients routine screening mammograms. It was positive for DCIS (ductal carcinoma in situ) – which is the earliest form of breast cancer. This patient spoke zero english, she had just moved to the US and lived with her adult daughter and grandchildren. I thought about the awful way the news had been delivered to me when I was diagnosed, so I recalled all the things that had been missed then so I could do it better for my patient. I immediately set up appointments for my patient with oncologists and surgical oncologists at the local breast cancer center. I had her booked to see me with a nurse care manager, a translator, and the patients’ daughter. I spoke slowly, I delivered only facts (no promises), I answered their questions, and I shared my plan of attack. When I followed up with them 2 weeks later, I connected them with behavioral health and the patient and her daughter thanked me for my kindness and help. The daughter said she was so grateful to be here, because if they were in their country, they never would have known and they likely wouldn’t have treatment. Later when people asked me how it was delivering that news – I realized it was much easier than I expected because I was so motivated to help them and make them feel safe. I wasn’t thinking about myself or my cancer and was actually surprised at how well I was able to deliver the news without stirring up my own issues. Of course about a week later when I was driving home from indoor thinking about it all I had my moment to cry it out and process what had happened. Ultimately though I love my job and nothing is more rewarding then helping other people stay healthy and it helps me deal with my own shit as well.

That brings me to the other ways that I cope as a cancer survivor.

Project Koru

Sharing my story as a way to bring awareness about skin cancer and also the difficulties that young adult cancer survivors face. You may remember that I went on a week long young adult cancer survivors surfing retreat (Camp Koru) in November of 2017. It was the single best thing I have done for myself post cancer. Before Camp Koru I felt completely alone as a young adult cancer survivor. There was no one I could talk to or who would understand the anxiety and fear I was feeling (especially after treatment ended). All the local cancer support groups I had researched were full of survivors who were more than 20 years older than me. Then I went to camp and I met 15+ other young adult cancer survivors who had all felt the same fear, anxiety, trauma that I had. we were all instantly bonded by our collective trauma and resilience. Having my Camp Koru community has been huge and I would be way behind on my psychological growth post-cancer without them.

DCIM100GOPRO

I knew within 2 days of being at Camp Koru that I didn’t want this to be a one time experience. I knew that I wanted to help facilitate camps for other young adult survivors so I could help them grow post-cancer the way I was able to. So I applied to be an ambassador (leader-in-training), was selected for leadership training, and then was an ambassador at my first camp exactly one year after the camp I had attended as a participant. Being part of the Camp Koru staff was almost as special as being a camper. I had the unique opportunity to help the campers heal, feel, and thrive as they processed their experience on the beautiful island of Maui.

When you are a cancer survivor you are always dealing with fear of recurrence. I’m naturally a fighter, but when treatment ended and all I could do now was get scans every 4 months it felt like I was just sitting there waiting to be diagnosed with cancer again. Being able to help lead these trips for young adult cancer survivors; being able to spread awareness about melanoma through my blog/interviews/public speaking; being able to raise money for melanoma organizations through various athletic endeavors; being able to educate my patients and order their respective cancer screenings; this is my new version of fighting cancer, and it feels fucking awesome.

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Life Updates

Now back to the fun stuff. Like I said, the last 11 months have been just fucking amazing. As you know I ran the Boston Marathon last April and then:

May 2018 – I graduated my NP Program. Pretty emotional considering I received my diagnosis 9 months into my 3 year program. I didn’t take any incompletes, I barely missed any days of class, I got straight A’s after my diagnosis so I guess you could say cancer made me smarter.

June 2018 – As I said earlier, I had my scans on the 18th, Lege turned 28 on the 20th, I took my NP boards and PASSED on the 27th, the 28th was my 2-year Cancerversary, and I secured my first NP job on the same day!

July 2018 – Brute Squad travels to the great mystical land of Cincinatti, OH to compete in the 2018 World Ultimate Club Championships. It was my first Worlds. The tournament was 1 week long and we played teams from Australia, Japan, Colombia, Russia, Canada, and of course the US. Long story short we made it to semis but there was crazy thunder/lightening storms and our game got cut 1 hour short and we finished a 20 minute game indoors, which is not how Worlds should be decided but in the end we tied for 3rd.

Also – I had my Bachelorette party. Yes we got squad swimsuits.

camp koru matching tatts

August 2018 – Lege and I got married in between frisbee tournaments. We also moved to Pawtucket, Rhode Island 10 days before our wedding (I DO NOT RECOMMEND).

salad is scary

cake is fun

September 2018 – Honey moon real quick to Costa Rica, more frisbee tournaments. Our game was streamed on ESPN2 in a bar – that we were at, which was pretty dope for women in sports.

I started my job as a brand new Primary Care Nurse Practitioner at a network of community health centers in Pawtucket & Central Falls, RI.

October 2018 – Nationals – We lost in the finals to the same team as last year, but it was an incredible season and I love my TEAM.

November 2018 – IMPACT Melanoma

I was invited to speak at the IMPACT Melanoma Gala – their biggest fundraising event of the year. I got to tell my story in front of a crowd to inspire people to donate to the cause of preventing Melanoma. They wouldn’t let me say “fuck” [melanoma] at a black tie event but it still went great anyway (I said “eff” instead).

I was an Ambassador at Camp Koru for a week

Lady Staff!

Camp Koru Staff!

 

December 2018 through now

Coaching Brown University’s Women’s Ultimate Team “Disco Inferno.” Working my tail off as a new NP, trying not to let anyone die on my watch, trying to figure out how to live in a new city and navigate married life with my Beaux, and playing as much ultimate as my body will allow.

college tournaments are cold, muddy, and silly.

April 2019 – Brute tryouts start again and we’re back at it!

An Update on Updates

I received some feedback that I was not updating my blog frequently enough and people who follow my blog (but not my social media accounts) get scared that I am dying when I haven’t posted an update. I have started no-joke, 7 half written blog drafts and here we are almost 1 year after my last post. I am finding that my new life as a full-time new Nurse Practitioner on top of all the other stuff I’m doing (coaching, working out, keeping myself mentally sane, trying to see friends and family that are now farther away) has left me with very little time to sit down and write blog updates the way I want to: overly detailed and full of profanities, usually. The solution to this is to follow me on instagram (@schwambomb) where I generally post an update within a week or 2 after my scans.  You can also assume, that if bad shit starts happening to me – I’m usually pretty quick to write a blog post about it because that is how I process stuff. For my sanity, I’m going to let you know right now that I likely won’t be updating my blog more than a few times a year while I’m healthy. Right now my priority is balance and it takes me a LONG time to write these updates because I am bad at brevity.

A special thank you to my husband – who gets all versions of me and loves me anyway and also edits these posts. Also you guys, he is comitted to getting me my cake around scan time. The last time he brought me a piece of cake from a party he was at and didn’t have anything to put in on so he held it in his hand the entire 30 minute ride home until he could give it to me. If that’s not love, I don’t know what is. The cake was delicious.

 

To ya’ll – thanks for reading and supporting me. And as always, Fuck Cancer.

Post Boston Marathon – Quick Reflection and Many Thanks

Wow, what a ridiculous, incredible, unforgettable day April 16, 2018 was. I was able to take in and be in the moment several times while running the marathon, but all the emotion really hit me yesterday. I have honestly never been more proud of myself and more grateful and humbled by all the people who love and support me.

Thank You

First, I have to thank everyone who donated to my marathon fundraiser. You glorious, generous, humans with hearts of gold helped me raise a grand total of $13,508 for IMPACT Melanoma. Together our 36 Team Running for Cover members raised $368,588. THAT IS SO MUCH MONEY FOR SO MUCH GOOD!

I have to give an extra special thank you and shout out to all of brave souls who ventured out in the atrocious weather only to watch me run by for like 10seconds. I mean honestly, temps were in the 30-40s, there was constant rain and often torrential downpours with chilling headwinds gusting up to 40 mph. If you asked me, I’d much rather run in that weather than STAND in it. So now I know that I have some of the best fucking friends and family in the world because only  love and true friendship would possess a person to do something crazy like that. The cheers and signs were priceless and it really powered me forward from mile 17 and on. From the depths of my soul, I THANK YOU, I LOVE YOU ALL! Vicky’s posters got destroyed by rain but hers said “Fuck Melanie” and then “P.S. I miss understood the assignment.” Hirsch, Jack, Rachel, & Claudia had a sign that read “Just Keep Schwamming” which is fucking fantastic. Still collecting images and photos of my supporters and signs but here’s what I have so far:

Thank you to everyone who followed me on the app and sent me encouraging texts throughout the day, every single one made me smile.

On behalf of all the Boston Marathon runners out there – I’d like to thank all the other spectators and college students who braved the weather. The crowds were astoundingly thin especially miles 1-12 so the people who were out there, I can assure you we fucking needed you and you guys showed up. Thank you for responding to my waving arms and shouting of nonsensical things with words of encouragement. Around mile 21 I yelled at a particularly glum-looking group of spectators “I had active cancer last year, LETS FUCKING GO” and they went nuts and then I ugly cried for like 1/4 mile – thank you glum spectators, I REALLY needed that release. Thank you to the volunteers who stood in the rain and opened gu packets for me when my fingers were no longer functional and kept me (over)hydrated – I had to stop to pee TWICE on the course and I’ve never once stopped during my 4 months of training. Thank you to the random spectators in the crowd who gave me hand warmers (LIFE SAVIOR) and even helped me shove my hands back in my gloves. Thank you to IMPACT Melanoma and Team RFC for providing me an opportunity to support a cause I care so intensely about while also allowing me to check off a lifelong bucket list item.

Thank you to my parents for raising me to be a strong, independent, goal-driven woman and for trekking around Boston in the rain to see me at mile 17 AND the finish line. Thanks to my brothers for toughening me up and cheering me on from afar. Thank you to Lege’s family who has been so amazing and supportive and also stood in the rain with incredible home-made signs. Not pictured is Casey who made me an AMAZING t-shirt, which will soon be on display.

Finally, a super special thank you to Lege, who had to deal with my weather, wardrobe, ice bath, fundraising, and injury hysteria for 4 straight months and he STILL wants to marry me. His cheers/antics at mile 13 were so alarming that a literal stranger documented our rendezvous without being asked and then promptly sent it to Lege.

As for my time, my original goal was to finish with an average pace of under 10 min/mi. When the weather forecast showed unforgivable rain/wind and I had a couple late tweaky injuries, I decided I wasn’t going to focus on my time but rather enjoy the spirit of the Boston Marathon and try to hug and high-five almost everyone that came out to support me. I am so glad I did that and I wouldn’t change a thing. I ended up with a final time of 4:23:04 at an average pace of 10:02 which included 2 whole bathroom breaks and many other stops for hugs and hand-warmers. I even stopped at most hydration stations after choking at my first 6 attempts to drink from a cup while running or walking fast. Even though my average pace for long training runs were a full minute faster, this just sets me up to PR at my next marathon 😉 I couldn’t have accomplished any of this without all of you, so thank you all.

Other highlights and pearls from 26.2 miles

• I accidentally smiled at guy holding a sign that said “smile if you sharted” I started shouting excuses at him but he wasn’t having it.
• I seriously considered peeing my pants at mile 22 after holding it since mile 17. I didn’t want to stop because I was afraid of having to wait in line at a porto potty and becoming hypothermic. Also you guys, nobody would have noticed because it was monsooning out there #dontjudgeme. Luckily for my dignity, it turns out I am unable to pee and run at the same time, which convinced me I should just find a porto-potty because standing there peeing in the middle of the street at the Boston Marathon just wasn’t something I could do. I found a vacant porto-potty at mile 23, in case you were wondering, I made it.
• I saw a guy running barefoot, but that was at mile 4.
• I underdressed for the first time at the marathon in my 4 months of training where I constantly overdressed
• my legs started hurting at mile 10. woof
• One of the hardest parts for me was having to literally run away from my friends and family after just seeing them. I like, wanted to hang and chat but it turns out there’s no time for that in a marathon.
• I ran a total of 420 miles from January to April 16th
• I still can only walk down stairs going backwards 2 days s/p marathon
• I initially wasn’t going to buy a marathon jacket because the color is just so terrible. After I realized it was socially unacceptable to wear my medal the day after the marathon, I went and got a jacket and haven’t taken it off since.
• signs that said “never trust a fart” & “just keep swimming” made me smile
• all the signs and supporters pictured below

More blog posts coming soon

Believe it or not I have a blog post in the works that details my marathon adventures and reflections in more depth. I actually still have to graduate NP school this month, so that blog post will be coming in a couple of days. I also have a long overdue Camp Koru post as well. For now, enjoy these photos of my experience. Videos will be posted on facebook (because I can’t post them on here) curteousy of my parents.

Boston Marathon – the day before

You guys! Marathon Monday is TOMORROW! I can’t believe how fast it creeped up on me. Actually that’s a lie, It feels like time has been moving in slow motion for the past 2 weeks. I keep having dreams that I’m running it and waking up exhausted and anxious.

I have so many blog post drafts in the cue and want to write all about my training and my experiences the last 4 months but somehow it’s already 5:30pm on sunday and I will just share with you guys a few tid bits and how to track me.

Track me on Marathon monday

There are 2 ways to do this. Not sure how accurate they are and have been told that they can be pretty delayed in the past. I am in wave 4 and will be starting at 11:15AM.

1. Live tracking with the B.A.A. Boston Marathon App (free)
   A) Search “Boston Marathon” in the app store of your iphone/android device
   The app looks like this.
   
   B) Download it (for free). Select boston marathon april 16, 2018. Select “watching”
   C) Select live tracking and you can search for me by name (Elana Schwam) or my bib # 28965
2. Text updates via AT&T Athlete Alerts. This will send you alerts of my progress starting at 10k, then again at 21k, 30k, 35k, 40k, and finish line (42k).
   A) text “RUNNER” to the number 234567
   B) you should get an automatic reply prompting you to text back my bib number – 28965
   C) you should get confirmation that you will get text updates about me. If you didn’t, try again.

Thank you Mother Nature, you sassy lady, you.

Overall, the weather is less than ideal…

I was originally hoping to finish in about 4 hours (9min miles)  but with the 20-30 mph headwind, freezing “feels like” temps, and constant rain, I know it’s going to take me much longer. I hope to finish before 4pm, but ya never know. At this point my main focus is to SCHWAM THE SHIT OUT OF THIS MARATHON, because it can’t be worse than cancer and also to just embrace and enjoy the spirit of marathon monday in Boston. This is an incredible dream for me and I don’t care what mother nature throws at me, I’m running this race for me, for you, for all the melanoma warriors and survivors, and all the other cancer warriors and survivors as well as those who are not with us today.

Thank You

Thanks to all you wonderful humans I have surpassed my initial fundraising goal of 10k and have raised almost 13k for Impact Melanoma. You guys probably have a little bit of an idea how much this means to me but then multiply that by 1000 and you’ll get a better idea. I am overwhelmed, emotional, overjoyed, ecstatic about the outpouring of love and support. Every time I’ve gonna on a run the past 2 weeks I have teared up thinking about what this all means to me. This morning at the Impact Melanoma Brunch I won the “Melanoma Warrior” award which I was NOT expecting and brought both Lege and I to tears. On top of that I received a standing ovation when I went up to accept the award and nearly lost all my marbles and was sweating profusely while also holding in my pee for the last 30 minutes. When I got back to my seat I realized my fly had been down for the entire time.

I dedicate this marathon to…

Originally I was going to write names on my body, but again the pouring rain will have me covered up and or wash it off. Then I thought about posting it here, but I want to protect people’s privacy so know that I will dedicate each mile to specific people and I’m running the marathon for everyone who has experienced a cancer diagnosis, including the family of those who have been touched by cancer.

I love you all. Now I’m gonna go destroy some pasta and then PTFO.

Here are some pictures of my training and other marathon related events the last 4 months

 

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)!

 

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?

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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”

 

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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.

Holiday party with Brie!

DJ Ketchup & Mustard

“surfing”

the best dessert ever

La Jolla Cove

San Onofre sunset

S&T Hanuakkah!

twins

SoCal Xmas

bellagio

birthday run

MFA

Best birthday gift ever

MFA

caught

hei hei

bacon angel

favorite ornament

x-mas dinner

beach in Gloucester

The T, somewhere

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.

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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 2^nd 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.