Category Archives: Blog Posts & Updates

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.

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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.

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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.

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Also at practice this past weekend I took a very desperate, high speed attempt to score to the face.

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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.

Screen Shot 2017-08-01 at 1.22.00 PM

 

 

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Get Naked – A guest post by Aunt Val about visiting the Dermatologist

Hey everyone!

This is Elana/Schwam speaking here. I just wanted to introduce my Aunt Val who wrote the blog post below in November 2016. I have been meaning to share this for a while but a lot was going on at the time and now seemed like the most appropriate time to share as last week was my last NP dermatology clinical of the semester  AND it was Aunt Val’s Birthday! At the end of this post I will discuss my dermatology clinical rotation as well as actual guidelines regarding skin cancer screening. But for now, I’ll let Val take it away…


Guest Blogger Aunt Val – A Trip to the Dermatologist

Hi all, it’s Valerie Rind here, aka “Aunt Val.”

Elana’s dad (Eric Schwam) is my brother, so Elana is my niece. I shed the Schwam name when I got married because I was annoyed that no one could ever spell or pronounce it.

As you know, Elana does more than just make the best of a bad situation (like having an inconvenient last name, or, oh, y’know, having cancer). She continues to amaze everyone by turning things completely around and showing who’s the Schwamboss.

Almost makes me wish I kept the name. Nah, not at all.

I’m the least medical person in the family where my brother = doctor, my sister = nurse, and me = lawyer and author.

I still don’t know how to pronounce Keytruda or Ippitymumbai and it’s a damn good thing I don’t have to inject myself.

So my comments are from a layperson’s perspective (i.e., medical idiot) but I hope they’ll be helpful.

Aunt Val Visits the Dermatologist

Two or three years ago I went to a local dermatologist about a small mole I had (on my left breast, if you really must know). He said it looked OK.

This year I noticed the mole was getting more pronounced. I told myself to get it checked, but you know how it is. One more thing you keep putting off.  Particularly if it might involve needles.

Prompted by Elana’s diagnosis, I said to myself, “Self, go get that thing examined. Now.”

Aunt Val Visits a New Dermatologist

Another dermatologist examined my mole and said it looked perfectly normal. He excised it while I tried to distract myself by telling him all about my awesome niece Elana.

My ex-mole was sent off for biopsy.

The dermatologist asked if I wanted a full body exam. I thought he meant he’d pass some electronic gizmo over the surface of my skin to see what showed up. (You medical experts are NOT allowed to laugh at me.)

He explained it was a visual exam. I dropped my gown and he looked a bit startled. You’d think he’d already seen many naked, mid-life women during his medical career. After all, just moments ago he was up close and quite personal with my left breast.

Nothing on my body looked abnormal, he reported.

It’s What We Don’t Know

The dermatologist pointed at some faint white spots on my arms. “I know exactly how you got those,” he said. “When you were a teenager, you slathered on baby oil, lay in the sun, and burnt your skin. Repeatedly.”

“Well, of course, that’s what everyone did,” I said. “Now I use SPF 6249 or whatever the highest one is that blocks everything.”

We didn’t know 40 years ago that frying our skin was harmful. The dermatologist theorized that in 40 years we’ll discover that using cellphones has long-term consequences. Whatevs.

Lessons Learned the Hard Way

Elana’s experience has taught me many things so far:

  • The power of the spirit.
  • The advantages of healthy living.
  • The incredible importance of having the emotional support of your family, partner, friends, and colleagues.
  • The need to get accurate, up-to-date medical information and informed opinions.
  • That medicine sometimes asks a lot more questions than it answers.
  • That you need to make the decision that’s right for you.
  • That a keen sense of humor is essential.

And if you have any doubts about a medical matter, don’t delay.  Get it checked out.

Again: If you have any doubts, get it checked out.

Oh, and in case you wondered: The biopsy of my mole showed it was benign.

#fuckcancer #awesomeniece


Thanks Aunt Val! This is such an important message to send out to the world. If you interested in  more words of wisdom by my Aunt Val, check out her website  http://ValerieRind.com. She also wrote a book, Gold Diggers and Deadbeat Dads, which is available at Amazon, on the iBookstore, and at Barnes & Noble for NOOK.

Skin Cancer Screening – Soap Box Alert!

For part of my clinical rotation this semester I had to research a screening guideline so naturally I picked the topic of skin cancer. I was surprised and pretty upset about finding out the following U.S. Preventative Services Task Force (USPSTF) statement on skin cancer:

“There is insufficient evidence on the benefits or harms of routine visual skin examinations by a clinician to make a recommendation for or against this type of skin cancer screening for adults (18+) who are asymptomatic” (USPSTF, July 2016).

Seriously? Go eff yourself.

This recommendation based on poor, inconsistent research in skin cancer screening and there is fair evidence that supports screening for skin cancer by clinicians to be moderately accurate in detecting melanoma.

Keep in mind, this recommendation does not apply to:

  • Adults with a personal or family history of skin cancer
  • Adults with high-risk of skin cancer
  • Self-skin exams
  • Exams done by dermatologists

The American Academy of Dermatology (AAD) responded to this statement:

“The American Academy of Dermatology is disappointed with this recommendation [via USPSTF], as dermatologists know that skin cancer screenings can save lives, yet we acknowledge the need for additional research on the benefits and harms of skin cancer screening in the primary care setting.” – (AAD, 2016)

Other Recommendations include:

  • American Academy of Dermatology
    • Recommends performing regular skin self-exams (once a month) to look for new or suspicious spots, and seeing a board-certified dermatologist to evaluate anything changing, itching or bleeding on the skin.
    • If you are at high-risk of skin cancer – seek dermatologist to see how often you should get skin cancer screenings (AAD, 2017).
  • American Cancer Society
    • Recommends skin cancer screening every 3 years for adults age 20-40, and annually for adults older than 40.
  • American College of Preventive Medicine
    • Recommends a full body clinical skin exam for patients at high risk for malignant melanoma.
  • American College of Obstetricians and Gynecologists
    • Recommends screenings for females aged 13+ with a history of habitual exposure to sunlight, a family or personal history of skin cancer such as basal cell carcinoma (BCC), squamous cell carcinoma (SCC), or malignant melanoma (MM) (Buttaro et al, 2017, p.245).

As you can see, nobody really agrees on the regularity in which people should get their skin checked and if they should get their skin checked at all. The underlying theme is if you are at high risk, start a conversation with your dermatologist (if you have never seen, one now is the time to get one)

All this talk about “high-risk” patients, who is at high risk?

The sun causes 90% of skin cancers

  • People with fair or light colored skin
  • Skin that burns or freckles rather than tanning
  • Having naturally blonde, red, or light brown hair
  • Having blue or green eyes
  • Having more than 50 moles, large moles, or irregular (atypical/dysplastic) moles
  • Having a family history of skin cancer (blood relative)
  • Caucasian males over age 50
  • History of blistering sunburns, especially in childhood
  • History of indoor tanning use
  • Recipient of an organ transplant
  • Having a weakened immune system (due to immunosuppressive drugs or HIV)
  • Hx of other cancers such as breast or thyroid cancer
  • Taking medications that make you skin more sensitive to the sun
  • Certain autoimmune diseases – (Lupus)
  • Having xeroderma pigmentosum or Gorlin Syndrome
  • Exposure to carcinogens such as arsenic or coal
  • Having an area of skin that has been badly burned by the sun or other means.
  • BRAF – mutation (melanoma) – 50% melanoma pt’s have this mutation in their tumor (AAD, 2016; American Cancer Society (ACS), 2016).

This is not an exhaustive list, but you get the idea.

Warning signs of skin cancer

  • An open sore that does not heal for 3 weeks
  • A spot or sore that burns, itches, stings, crusts, or bleeds
  • Any mole or spot that changes in size or texture, develops irregular borders, or appears pearly, translucent, or multicolored.
  • ABCDE’s of Melanoma – arguably the most important info you can provide for a patient, caregiver, or friend (AAD, 2016; American Cancer Society [ACS], 2016).Image result for abcde's of melanoma

There are a TON of amazing free resources on the AAD website that includes in-depth fact sheets, charts to monitor your own monthly self-skin exams, and other really informative sheets about all types of skin cancer. Overall, we are our own best advocates. If you notice something on your body changing, be an intelligent human and go get it checked out (like my Aunt Val!)

My mole was on my back. It became itchy and I’m sure it was evolving as I remember not knowing if it had existed before it started itching. Since the risk of having another melanoma is very high for me, I am checked every 3-4 months this year. Eventually I will probably move on to the skin exams every 6 months but the reality is that most patients discover their own skin cancers, which is why I still check my body monthly. It’s important not to check more than monthly, otherwise you won’t notice subtle changes.

Okay, I’ll get off my soap box now. I have a shitload more information about skin cancers and treatments and such but I will hold off for now.  I’ll eventually move this info over to a permanent page on my site so it’s easier to reference.

References

American Academy of Dermatology (2017, Feb. 3). New research highlights Importance of melanoma prevention, early detection. Retrieved March 19, 17 from https://www.aad.org/media/news-releases/spotme-skin-cancer-screening

American Academy of Dermatology (2016). Spot Skin Cancer: Free Resources. Retrieved March 19, 17 from https://www.aad.org/public/spot-skin-cancer/free-resources

American Cancer Society (2016) Skin Cancer Prevention and Early Detection. Retrieved March 19, 17 from https://www.cancer.org/cancer/skin-cancer/prevention-and-early-detection.html

Buttaro, T. M. et al. (2017). Primary Care: A Collaborative Practice. (5th ed.). St. Louis: Elsevier

USPSTF (2016, July). Final Recommendation: Skin Cancer Screening. RetrievedMarch 19, 17 from https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/skin-cancer-screening2

Life Updates:

No news, is good news! Things have been pretty uneventful for the last month or so since my last post, which is the least amount of action or “adventure” I’ve had in my life since I was diagnosed. This is excellent because I was honestly pretty exhausted from all my own organs raging mini civil wars on my body. I have been deep in ultimate frisbee training and tryouts for Brute Squad, which are going pretty well. It’s amazing to me every year how many young up-and-coming ultimate athlete’s there are. Every year the sport gets more and more competitive and it’s so awesome to see it grow, but also, it makes tryouts pretty fucking exhausting. I’m one of the oldies now at the ripe old age of 30 but I’m hanging in there.

School is wrapping up this semester with this being the last week of class and I have two finals next week. I can’t tell you how much I am looking forward to having a real extended vacation without cancer treatment or NCLEX studying. I will finally get around to emailing so many people who have reached out to me these past 10 months as well as organizing my normal life a little bit more.

Some exciting things that have happened over the last few weeks include my first easter egg hunt with the Freedman’s (see instagram video), packing up my childhood bedroom since my parents are moving out of Westborough mid May, more wedding planning, and completing my first ever Boston midnight marathon bike ride! The ride was super fun and something I have been wanting to do since I first heard about it.

The Boston Marathon has always been my most favorite Monday and running it has been an item on my bucket list since I first watched runners truck up heartbreak hill several years ago. I get strangely emotional about marathons (maybe I’m not alone?) I think it is such an amazing human feat and it brings me to tears thinking about it. I’ve cried every marathon Monday I’ve attended or watched (and even during a few documentaries that weren’t even about Boston). I have decided that next year (2018) I am going to apply to run and raise money for the Melanoma Foundation of New England. Obviously applications haven’t opened yet, but it’s something I feel really passionate about doing and hope they let me in.

I won’t have scans or skin checks until June, so everything should hopefully stay quiet until then. Minor micro-burst headaches still but they are less and less frequent. Looking forward to celebrating my cancerversary June 28th!

 

RyFight

I am not the only ultimate frisbee player battling cancer. There is a guy from New York named Ryan, who I don’t think I know personally, but it’s possible we’ve crossed paths without knowing it (in the tiny ultimate world). Ryan was diagnosed with colorectal cancer in Sept. 2015 that ended up being stage 4. In short, things have not been going as well for him as they have for me. His blog is amazing, and it’s easy to tell very quickly that Ryan is an extremely genuine guy with a huge heart. Laura Bitterman and my Brute Squad teammates set up a fundraiser (schwaming cancer tanks) for me last summer when I was first diagnosed and it was unclear if my health insurance was going to cover anything. I have been extremely fortunate for new immunotherapies combined with masshealth and the Affordable Care Act, that have left me with a surplus of donation money that I haven’t touched and haven’t really known what to do with. It’s always possible my cancer can recur but right now I am doing alright and when I read about Ryan’s unfortunate updates, I knew I wanted to help out. Please check out his page and consider donating as well .

I’ll update again sometime in May. For now, stay sexy and fuck cancer!

Update #19: Good news despite a couple confusing months thanks to Petunia the Pituitary Gland

HI GUYZ!

I lied and said I would get you guys an update over my spring break week (a week ago). But it turns out the place where we stayed had nonfunctional wifi, and also bad cell service so I actually ended up losing a large draft of this post while I was there and was too annoyed to get back to it until now. It was vacation after-all so spending time with my fam and snowboarding was the priority. Again, a lot of time has passed since my last update so here’s what’s happened since then.

Early February: Pituitary Probz

So a week before I posted my last update I had some alarming symptoms pop up…

  • Micro-burst headaches –  1 week after my last prednisone taper I start to experience what I call “micro-burst headaches.” There are one or 2 particular spots on my head that hurt kind of intensely for like 10-15 seconds, then it goes away. On bad days this would happen like 5-6 times a day.
  • Migraine aura/vision issues: I have a migraine like aura where I can’t see right out of my left eye and I have a pressure sensation and light sensitivity for a few days. The acute vision issues lasted for only a few minutes but was noticeably blurry for about 3-4 days afterwards. Also my pupil is bigger in my left eye. At this point I am alarmed but chalk it up to having my first migraine aura.
  • Almost passed out: 3-4 days after the migraine episode I go to a sculpt yoga class with a few of my teammates. I have been going to these classes for years and never had a problem. About 20-30 mins into the class when I pick up a heavy set of weights I start feeling extremely nauseated and light headed. I should mention that I am kneeling at this point. I drop the weights and I feel better instantly. I am fine during the next exercise where we don’t use weights. We do another exercise with weights and I am standing. I don’t even remember what exercise we were doing except that I start to feel very lightheaded and dizzy and I get the “feeling of impending doom” which is exactly what happened to me before I passed out last month. So I am an intelligent human and I just sit down on my mat before passing out and I feel better. I try using weights one more time and the same thing happens so I need to rest. For the rest of the class I don’t use weights and make it out alive. My friends also noticed I was acting strange and were watching me closely. I knew something was wrong, this had never happened to me and I wasn’t dehydrated/malnourished. My symptoms were directly related to physical stress I was putting on my body. At this point I was alarmed and emailed Dr. Lawrence and Riley about my symptoms and they had me come in the next day for labs.
  • Potential hypophysitis: Based on my symptoms Dr. Lawrence and I think it’s possible I have hypopysitis, which is a fancy word for inflammation in the pituitary gland. This is a very rare thing to happen to a normal person, but is quite common to have autoimmune hypophysitis for someone who has had treatment with ipulimumab (Ipi). This means my immune system might have started attacking my pituitary gland and maybe causing the headaches and the passing out.
    • I get an emergent Brain MRI, and the radiologist says there is “subtle” inflammation on one side of my pituitary gland, but this would be an “unusual presentation” of hypophysitis since it’s unilateral inflammation. SOOOOO they send me off to a a new specialist named Dr. Faje- a Neuroendocrinologist, who decided he wants to do a specialized MRI of just my pituitary gland where they inject contrast in a more controlled manner to better visualize the pituitary gland. They want to do this because everyone is confused by my symptoms/presentation. He says it may be possible I have a benign tumor there, but at this point we are pretty sure it’s not metastatic disease.
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      Left image: new MRI showing subtle inflammation on the right side of my pituitary gland. Right image – Brain MRI from October, pituitary gland looking less asymmetrical.

Not Hypophysitis! – the specialized MRI shows that it is pretty much similar to my last MRI so we say, okay I guess.

What caused all those scary symptoms?

Based on some other blood work and tests we had done in between all the MRI’s Dr. Lawrence and Dr. Faje and I all concluded that I was probably mildy adrenally deficient or suppressed after my last prednisone taper. Cortisol is a steroid hormone (gluccocorticoid) produced by the adrenal glands, which has many functions but it’s main function is to allow the body to respond to stress.  ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release  cortisol. Sometimes after taking prednisone (a synthetic gluccocorticoid, which is recognized by the body as similar to cortisol) your body will be slow to respond after a vacation and won’t produce cortisol like it once did. This is not a completely accurate description of cortisol and ACTH so if you want to learn more go to this website or google it.

Pretty much my body was slow to adjust after my prednisone taper which is why at first I wasn’t producing enough cortisol to respond to the stress I was putting on my body, which resulted in me almost passing out and being orthostatic and stuff. My blood pressure was really low those first couple of weeks and my cortisol stimulation test afterwards came back barely passing. I was producing enough cortisol at the time to manage normal life, but when stressed I was at a deficit. However, this has self corrected after a couple of weeks and I have been ramping up my workouts and preparing for Brute Squad tryouts which start in a couple of weeks!

I should mention that I am not having the fainting symptoms anymore which is great. I still have the “micro-burst headaches”, but they are happening less frequently and are not debilitating so Dr. Lawrence and I are just “watching” them.

Some Reflection

This whole pituitary problem went on for about 1.5 months or so which is why I gave my pituitary gland a name – Petunia. Petunia, Melanie, and Louise have been having some quiet ragers in my body the last year. I am very glad there is nothing actually wrong with my pituitary gland and as it turns out she is just naturally asymmetrical like the rest of my special body (see about me section and read about Sally).

This whole pituitary/headache scare however was another reminder in which the way a cancer diagnosis (specifically melanoma) will affect your for the rest of your life. You have to be vigilant about your symptoms when you have stage III melanoma because Melanoma loves to travel to the brain, liver, and lungs. Given my abrupt symptoms, my family was worried that Melanie had traveled to my brain. I was pretty confident it wasn’t a metastasis, but it just goes to show how any tiny little symptom can just blow up and be this huge thing.

I hate making a big deal out of little things, and I just want this all to go away. I didn’t tell my family right away about my symptoms and they were upset. I didn’t want to stress them out if it turned out to be nothing, which it pretty much was. So after we found out it was essentially nothing, I found myself to be both relieved and also simultaneously very upset/angry that I had to put my family through this roller coaster of angst with tons of tests, scans, and unanswered questions. It’s scary and annoying, that I have to take note of everything that happens to my body and link it as sign of cancer progression until it’s ruled out. This goes against my moral code of ignore everything, unless it can’t be ignored because you don’t want to waste anyones time or worry. I’m gonna stop complaining now because the truth is right now I have no evidence of disease and I’m going to enjoy that fact.

On a completely different note- funny short story:   Lege and I planned to watch this movie called “Arrival” at home one friday night. Right before we start it up Lege mentions to me that his parents warned him of a small “cancer scene” and I was like pshhhh, whatever, I can handle it lets watch the movie already. This is not a spoiler alert – but if you’ve seen the movie than you know the first 3 minutes of it are essentially a montage of a close mother-daughter relationship, which starts off really warm but then the daugher gets cancer and dies abruptly in her adolescence. Let me remind you this is the first 2-3 minutes of the movie. So I thought I was gonna be okay, but it’s really well done and Lege looks over at me and my face looks like I’ve just stuck my head in a large body of water. I was both sobbing and giggling about how wrong I was about how I could handle a little “cancer scene.”  Lege paused it and we cried and giggled at my ridiculousness for a minute or two and were able to watch the rest of the movie without any problems. Anyway, great movie, I highly recommend it!

9 Month Scan Results!

Right before I went to Utah on spring break, I had my 9-month CT scans of my neck, chest, abdomen, and pelvis. I also had my 9 month skin check a couple of weeks before that. The point of these scans are to make sure I haven’t progressed to stage 4 disease (meaning that cancer hasn’t metastasized to a distant site or organ). The skin checks are to makes sure no melanoma pops up or spreads superficially. Melanoma is well known to spread quickly and quietly to organs, which is why scans happen so often in the first year. Last week I got my results which were CLEAN AF! This is excellent news, meaning I continue to be at NED status (No Evidence of Disease)! Since Melanoma is such a bitch and has such a high recurrence rate, they don’t often use the language like “cure.” So for now while I am NED status, we still monitor me pretty tight for the next 5 years to make sure I stay that way.

What’s next?

For the first time since I started this journey, I don’t have anything scheduled until 3 months from now (unless some new weird symptoms occur before then – knock on wood)! In June I will celebrate my cancerversary and have my 1 year CT scans, blood work, and Brain MRI! Until then I should finally have some time to post guest blog posts (up next is my Aunt Val who wrote a great post about her visit to the Dermatologist)!

Until then, stay sexy and fuck cancer!


Life Updates/Pictures

School – I am loving NP school for the first time. Not that I didn’t like it before, it was just very stressful. I am now less stressed, and am doing very well in class and am intellectually stimulated and loving my clinical and feeling like I actually know shit and can take care of patients. Considering working in dermatology in the future!

Ultimate: It’s the worst time of the year. I am training, alone for tryouts. There isn’t much rec frisbee happening which means I am having to do awful sprint workouts and stuff when you feel slow after the offseason. Tryout time is stressful but I plan to tryout for Brute Squad again and I’m really excited to see all my old teammates and frisbee peeps in general which starts in 2 weeks! Wish me luck!

Wedding – The momsquad is killing it and Lege and I have barely had to do anything. We got a venue and a date. No complaints here!

Pics from our family ski trip to Park City!

 

 

 

Update #17: New Year… same roller coaster . Still fighting, and winning, mostly.

Well wow, since my last update was almost a month ago, there’s lots to discuss.

It’s been a roller coaster but that’s nothing new. I won’t be able to go into as much depth as I normally do because I’m typing this from my phone as I sit on an airplane to Cuba! Also prob lots of spelling/autocorrect issues so I apologize in advance.

Head to the Timeline for a quick summary.

Recap: 

Prednisone taper: this started about early December. Everything went really smoothly and my LFTs continued to trend down towards normal at my biweekly blood tests. I finished the taper ceremoniously on my 30th birthday!

While this is good short term news, in that I was able to taper quickly and turns out I don’t have autoimmune hepatitis, but likely my liver just had a toxicity reaction to the ipi. It is somewhat disconcerting long-term news in that we no longer are sure that my immune system was activated, and if it was if was activated long enough to kill all the undetectable cancer cells. We don’t really know.

 


Discontinuing ipilimumab (or any systemic treatment for that matter)

Since I’ve had such severe reactions to the Ipi treatment my healthcare team and I feel that it doesn’t make any sense to keep trying treatment because the risks now potentially outweigh the benefits. We’ve exhausted all the available treatment options for stage 3 melanoma.

Obviously I am happy to be done dealing with all the craziness of systemic treatment, but I am honestly a little more nervous than I was prior to starting Ipi about my chances of recurrence. The uncertainty of not knowing if Ipi worked makes things a little more difficult to deal with than I initially anticipated.There is no way to know, the data is so new. So just watching and waiting for now, and that to me is a little bit scary.

The good news is I have no evidence of disease currently! Other good news is that melanoma treatment is advancing rapidly so likely if I ever do have a recurrence there will be better, safer, more effective drugs that can at least help me survive a lot longer and even be cured. Only 3 years ago a stage 4 diagnosis was essentially a death sentences, with a few months left to live. People are being cured now with new drugs like Keytruda (pembrolizumab)and many people are living for many years at stage 4. Anyway, not worrying about that now.

For me, even though I have no evidence of disease (NED). Melanoma is known for its high rate and risk for reoccurrence. We don’t call ourselves survivors because we could probably still be fighting it. That’s how I feel now. I’m still fighting and I’m not going to give up. I obviously have the trauma of misdiagnosis and strange and random complications in the past so I still have my guard up and I’m not gonna let it down until I’m NED for 10 years.

Follow up: For now watching and waiting means scans every 6 months and blood work a little more frequently.


School:

for the first time in this graduate program, I got straight motha fuckin A’s this semester. Hot damn.

NCLEX

The major reason for my delay in updates were due to me trying to focus most of my time on studying for the NCLEX (Nursing Boards/ Licensing Exam). And any free time was spent trying to move my body in something resembling athletic motion remembering to eat food and interact with humans other than Lege at least a couple times a week.

Schwambomb RN, BSN

 

Welp, it all paid off because I PASSED MY NURSING BOARDS and you can officially CALL ME an actual Registered Nurse!  After the exam I freaked out. It’s an adaptive test so it gets harder as you go. The minimum amount of questions you can get is 75. The max is 256 and your time limit is 6 hours. I had been practicing and preparing vigorously so that I could pass in 75 questions because I know I would move slow. The test shut off at 77-78 questions and I didn’t feel good about the last few questions so I went into “post NCLEX psychosis mode” and convinced myself I failed and cried for the rest of the day. Everyone I’ve spoken to since has felt the same way (at least that’s what they tell me). But I passed and I’m so glad it’s over!

Believe it or not, my program doesn’t end here and I’ll be spending the next 1.5 years working towards getting my masters and becoming a Nurse Practitioner specializing in both Women’s Health and Adult Gerontology Primary Care. But passing this exam is a huge milestone and also a huge burden lifted, and I will be ceremoniously be burning my NCLEX books since I can’t sell them back to Amazon. Other nursing friends, please join me.

I can’t end this section without throwing some shoutouts to all my nursing homies at MGH and beyond who supported me along the way, and after they passed scoffed at me and told me I’d be fine. Lege’s family and my family for allowing me to study even during some holiday celebrations.


It sounds like everything is great… what’s the roller coaster?

FEVERS RETURN WITH A VENGEANCE 

unfortunately the morning I woke up to take the NCLEX, I wasn’t feeling very well. I assumed it was stress and nerves and pre-medicated myself before the exam. Obviously I was a wreck after the exam but then I started getting chills. I took my temp, low-grade fever. By the time I went to bed it was 101.2. I woke up several times during the night to change after my night sweats left me feeling like I was sleeping in a swamp. I called my oncologist first thing in the morning even though my fever broke on it’s own. I had an appointment to see them the next day. The whole rest of the day I had fevers/headaches and Lege took care of me.

The next morning was the scariest thing that’s happened to me thus far.  My fevers tend to run really high at night. I checked it and it was 103.5. I woke up at 5am to use the bathroom. When I was washing my hands I started to feel really weird and had this horrible feeling. I ignored it at first and then when I tried to walk back to bed I just remember everything going black. Luckily somehow was able to peep out to Lege (who was fast asleep). I apparently said “boo I can’t see” in a tone that he says lit his brain on fire. Lege popped out of bed and found me backwards holding onto the door pane. He got his arms under me just as my knees buckled and half carried/dragged me until he realized I was no longer conscious and he fireman style launched me onto our bed. I came to to him being like “so we should probably go to the hospital” but I was confused and wondering how I got to the bed. So first I made him explain to me what happened. After a few minutes and profuse sweating by me, I actually started to feel better. We rang Dr. Schwam and he said it prob just made sense to wait until my appointment with Riley rather than go to the ED for no reason.

Lege spent most of the day with me  walking me around like a 90 year old lady with a high risk for falls. At my appointment they took a million blood cultures and tests and UAs. My LFTs were elevated but only mildly. They were worried I had hypophysitis (enlargement/swelling/inflammation of the pituitary gland), which is an uncommon side effect of ipi. All my endocrine labs were either mildly low or within the normal range so I didn’t have to have an “emergent MRI” which was nice. The worst thing was my oncologist recommended that I not go to Cuba. I immediately told them that I was going to go to Cuba unless they thought I was going to die. They understood and helped me prepare so that I can be a physically stable as possible while I’m there. So I’m back on the prednisone train!  While I was there they also gave me a liter of fluid and some snacks.

We started with a small dose of 20mg. But the very next morning I had another raging fever and the worst chills I’ve ever had. I was trying to spoon feed myself some yogurt (have to eat before you take prednisone) and my hands were shaking so bad I kept missing my mouth. It was scary. I spoke with Riley later on and she agrees to increase the prednisone to 30 mg and also take 600 mg of ibuprofen. Since then my fevers have been controlled, no more syncope episodes and I’m off to Cuba! I’m meeting with Dr. Lawrence as soon as we get home to discuss taper and get more labs. While I hate being back on prednisone, I want nothing more than to feel well so I can have a really great time in Cuba which I have been looking forward to for forever.


30th Birthday

It was amazing! I was so touched at how many people came out to celebrate with me and I was even allowed to have a few birthday dranks (which we luckily found out didn’t effect my LFTs at all!

 

CHRISTMAS IS COOL

By the way it turns out Christmas is a really fun holiday to celebrate. I went to Lege’s family’s house where they house 15+ extended family members.  They showered me with gifts and it was really lovely to hang with the Freedman’s, Rosenblatt’s, and Trittipo’s.



CUBA

Lege and I will be traveling around Cuba for a week doing fun things like waterfall hikes, scuba diving, white sand beaches, and of course interacting with the locals and visiting some of Lege’s friends from when he spent a semester abroad there in college. After several delays we made it on our first leg of the flight! Can’t wait!


We’ll have limited access to internet but will post when we can on social media.


THE STORY PROJECT 

Late October I signed up to participate in the story project at MGH. It’s a place where patients, providers and family members share their stories about cancer and treatment and everything else.

It turns out I was completely mistaken about the process of The Story Project.  I thought I was about to share my story (live audience style) with a bunch of random patients/caregivers/providers at the MGH cancer center. There was no stage or microphone – you can imagine my confusion when they directed me into a tiny room. Instead I had a really intimate interview with 1 woman while another woman snapped over 300 awkward pictures of me. Seriously, she was really excited about her new camera and as you might guess I am pretty bad at/highly dislike taking serious photos so it got pretty weird.

Mostly I’m happy to have another avenue to share my story to inspire others to fight for hope as well as advocate for everyday patient empowerment.

Thank you to everyone who has shared it.
I think that about sums everything up. There are some other school related updates I’ll share when I return home. 2016 was fucking terrible but I made it through and couldn’t have done it without all of you. I had planned on sending out some thank you’d and emails but thanks to the fevers I wasn’t able to get anything done but pack. I’m so grateful for all the support and I love you all. I’m still fighting, and I’m going to win.


Enjoy some random funny pics from the last month:

 

Update #16: Mixed Results from the Liver Biopsy… but mostly good news!

Before launching into my results today, I just have a few general announcements:

Blog Housekeeping: 

Page updates: I realize there are a lot of new characters involved in my care/life. Clearly we’re not at Game of Thrones status, but there have been enough additions and enough nicknames to prompt some confusion from readers. Thus I have updated the About Me section to include a roster and description of most people involved in the blog, which includes family, friends, and my healthcare team. This will be especially helpful if you are new to me or my blog. Also for new readers, the quick and dirty details my entire situation are most efficiently understood by reading through my  Timeline page which starts from the beginning and moves chronologically to my current/future situation. For more details you can click on each blog post separately or read them from the home page.
I have also added in “read more” links to older blog updates so that the homepage doesn’t go on for eons.

Reading these posts: Many of you get the blog updates sent to your e-mail inbox. However, usually after publishing blog posts, updates and edits tend to happen almost immediately due to people pointing out huge gaps in my writing or me forgetting something or someone sending me something that goes great with current blog post. So I’d recommend just going to my live blog for the most current version if you want the most funny/accurate information. ok that’s it for housekeeping.

Edit: @11:47AM EST on 12/9/16 – I have updated/edited this post 6 times already since it was published 4 hour ago.


Well hello there,

The Liver Biopsy Experience:

Before I get into the results I figured I should share a tiny bit of my experience of going through the actual liver biopsy… so here it is:

The liver biopsy itself was a piece of cake. Honestly the hardest part was having multiple nurses fail at getting an IV in my arm and not being able to eat for 14 hours prior to the procedure. They gave me some conscious sedation and told me I could go to sleep but I wanted to watch the whole thing, so I did in a sort of woozy state. First an ultrasound technician took a series of pictures to find the best spot on my liver for the biopsy (as to not hit any arteries and such that are on your liver). Then the surgeon guy numbs me up specific to my liver site and then sticks a needle in my liver for 5 seconds and extracts a tiny piece of liver tissue (for biopsy). They made me stay in the recovery room for 2 hours after that to monitor for bleeding. There was none. So I went home eventually and that was that. It was pretty painless and by 1.5 days later I was back to fully functional schwam (AKA I could laugh without much pain and run down the street to catch the T).


Liver Biopsy Results: A mixed bag

Co-written by Dr. Eric Schwam and myself

So we got the results – and things are complicated, but what else is new!? I have asked my Dad (Dr. Eric Schwam) for a 3rd time to help me write this post for a number of reasons: 1) we make a great blog team (IMHO), 2) I am trying to spend a majority of my time studying for the NCLEX,  3) This shit is complicated and my dad is good at being succinct/clear without using too much medical jargon (although there’s a spectrum and I have lost sight of the layperson version these days), and 4) I can spend days writing these posts which brings us back to reason #2 

So my Dad has sent me his his version of a blog post and I have edited and added to it as I see fit. Most of what I type is in teal italics, but I also have done some general editing to my Dads writing that will not be obvious. Just figured I’d say that to cover my ass in case I mess something up. 

Dr. Schwam – Thursday Dec 8, 2016:

Hi folks.  Elana has asked me to write part of her update again, while she studies for the nursing boards (AT LEAST THAT IS WHAT SHE TELLS ME SHE IS DOING!)  I’m becoming a regular contributor.  Maybe I will rethink my decision to avoid social media.

Elana: Ha. Ha. Nice one dad. Also, I AM STUDYING.

Today we met with Dr. Lawrence, Riley, and Dr. Carolan (Elana now has her own hepatologist, or liver specialist).  We received and discussed results of her liver biopsy and today’s liver test results.

The liver test function test (LFT) results were very encouraging.  Her AST (29) is within normal range and her ALT (65) is still mildly abnormal but MUCH improved. Her Alk Phos (111) is still mildly elevated but nobody is concerned. This is very good news.

The liver biopsy was most consistent with a liver injury with evidence of regeneration (healing – this is good) but also very little evidence of an autoimmune hepatitis reaction.  Rather than producing clarity as we’d all hoped, the results introduced additional uncertainty.  According to Dr. Carolan, the most straight forward interpretation of the results is that the ipilimumab (“ipi”) or one of its breakdown products was directly toxic to the liver (i.e. a drug-induced hepatotoxic reaction).

Alternatively and less likely, it could still be autoimmune hepatitis because of 3 reasons:
1) the biopsy was done early in the course of the illness
2) the biopsy was done after a week of treatment with prednisone (which could have altered the evidence of immune reaction)
3) occasionally ipi-induced autoimmune hepatitis can look like this on biopsy anyway.

ElanaWhat is clear is that, these drugs are so new, nobody really has any idea exactly what the fuck is going on. We do to a degree but, as you may have noticed, things tend to change rapidly over here all the time.

Dr. Carolan feels that Elana can taper her prednisone rapidly over 2 weeks (as one would do for a drug induced hepatotoxic reaction) instead of the 6-8 weeks that the autoimmune hepatitis would require. This is also good news; you need to take as much prednisone as you need, but the less prednisone you have to take, the better…

Elana: YAAAAAAAAAAAAASSSSSSSSSSSS

If this is, in fact autoimmune hepatitis masquerading as a drug induced hepatotoxic reaction (like a a wolf in sheep’s clothing) then as the prednisone is tapered, Elana’s LFTs will start climbing again.  Therefore her doctors and Riley will be monitoring her closely for this.  They will be checking her liver tests twice a week.  If there is such a rise, she will go back to Plan A and take the prednisone for the 6-8 weeks.

Elana: NOOOOOOOOOOOOOOOOOO. However decently good news is that so far, the only side effects of prednisone I am experiencing are transient mood swings, which range from great joy to intense & irrational anger (which really only my poor dear mother has had to experience first-hand – if you see her give her a hug, she takes the brunt of my worst because we are so close. I love you mom and I’m sorry I got so frustrated) – to deep sadness and grief related to all of the above.

A photo tribute to my mother because we are so photogenic

So yes, I am very excited to taper the prednisone quickly because It’s really difficult not to be able to control or predict your own emotions. Even though it’s possible prednisone has helped me OCD clean my apartment and finish my school work in record times, I would much rather be a stable emotional human. Also send your love to Lege because he’s the other person that has to deal with me everyday at the end of the day when I am my most hangry and unpredictable. 

So did Immunotherapy (Ipi) treatment actually work?

Dr. Schwam: The problem is that to some degree this throws into doubt the issue of whether Elana has had “enough” ipi to fight the cancer or not.  This is a complex and nuanced issue that is based as much on gut feeling as on science.  My sense is that Dr. Lawrence feels that she is probably done, but he has not decided for certain.  As for me, I don’t think she should get any more ipi, but the decision is Elana and Dr. Lawrence’s to make and I will defer to them.

Particularly with cutting-edge medicine, there are so many decisions that have to be made by educated guess, rather than hard evidence.  An educated guess can turn a 50-50 decision into a 60-40 one; better odds of being right, but not by much.  As a result, this kind of sudden unexpected change in the clinical situation is very common.  One minute, you have adjusted to a health crisis and are moving forward with your hopes and despite your fears.  The next moment, the littlest thing can turn you upside down , you become emotionally destabilized, and you find yourself struggling to readjust again.  Kind of like having your sailboat capsize in a big gust of wind and having to right it, rescue yourself, and start sailing again.  Elana and I have been through that situation together before.  We will all get through it this time, too.


More of Elana’s Thoughts: 

The rest of this blog post is written and edited by yours truly (Elana/schwambomb/Lany) and I’m stopping with the teal italic font because there’s no need for it.

All of this was somewhat unexpected news for me. If you read my last post you know that I was settled on the fact that I was done with Ipi, that I thought my immune system had responded. But now that this is unclear I am conflicted again. I will ultimately take the advice of my healthcare team after discussing it more with Dr. Lawrence, if it even comes to that. However, I am clearly traumatized from having a “missed” diagnosis more than once in my life. The other issue is that Ipi just may not ever work for me, no matter how many doses I get, because that’s part of its “lock & key” mechanism. Either it works or it doesn’t and if it works, then you hope you get it al with how many infusions you get. It is clear Louise is irritated by ipi, but we don’t know why. So here I am just typing out my thoughts. I am probably not going to get another Ipi infusion. I am scared of  creating new unnecessary health problems. We have therefore exhausted all our options for stage 3 Melanoma so it’s possible after all the liver bullshit settles (assuming nothing else pops up which is actually a possibility because autoimmune side effects can occur as late as 3 months after the last infusion) – that we will be done with active systemic treatment of Melanie and will continue only with vigilant watching/waiting and scans every 3-4 months for the next 5-10 years. 

The ups and downs of cancer and Melanie are not new. Just like my Dad says, we will get through this, and the craziness seems like it should be slowing down soon. I will continue to post and have many people now lined up for guest posts including the momschwam herself, Lege, and my Aunt Val. If you too are are interested in guest blogging, let me know! 

I have sooooo much love and gratitude for everyone. I get emotional every time I think about all the wonderful friends and strangers that have impacted my life since this diagnosis. You all mean everything to me. Don’t be afraid to talk to me or ask me questions or tackle me out of the blue.
Below is just a very small portion of the love I have received from people the last 5 months. Also the most recent one from Paula is pretty amazing.

What’s next:

In an attempt to not repeat myself or my Dad you can just go to the Timeline and scroll to the bottom for a summary of what the future plan is.

So the medical/necessary updates end here. If you want, below this line you can read about some of my escapades and semi-interesting things related to my life that do not involve cancer.


Life Updates and Upcoming events:

GHHH Ultimate Tournament: I went, I played, I saw lots of old and current (and made new) friends. It was a blast. I also got really stoned at the after-party and briefly considered the notion that cancer was a social construct. I also spent a majority of the night hiding and eating ice cream and pizza and looking for my lost water bottle. I have decided that I will not be ingesting  marijuana anytime soon as it just makes me question EVERYTHING.  Also, Anthony – (a friend of mine but also the fiancé of one of my closest friends and former Brute TEAMmates, Sara Jacobi)  made me a replica of his league hockey jersey and it’s amazing. It should be duly noted that I am breaking all sorts or rules as I was wearing my 2Pac tank underneath it, but we don’t have to go into the biggest East vs West Coast gangster rap rivalry of the 1990’s (and arguably of all time). But since we’re here I’ll just tell you I’m a bigger 2Pac fan, based solely on his music and poetry.

I SURVIVED ANOTHER SEMESTER OF GRADUATE SCHOOL:
On Tuesday I turned in a 15 page research paper with a very long title: “The Effects of Multiple Kinds of Exercise on Health Related Quality of Life in Female Breast Cancer Patients Actively Undergoing Systemic Treatment.” In case you were wondering, the research concludes that exercise (yoga, pilates, high/low intensity aerobic exercise, resistance exercise, etc) are both safe and very beneficial for those patients.
I also performed my final practical (Head to Toe assessment – essentially every body system on a patient in under 30 minutes) in front of my Advanced Assessment instructor on this same Tuesday. I had originally planned to move my practical date back due to the fevers but I practiced it 1 time and decided I just wanted to get it over with and I got a mother-fucking A. After that I went home, cleaned my apartment like a crazy person and then had a very long, loud, and cathartic sobbing episode that was made up only of  pure tears of joy and relief. It happened twice actually, once when Lege got home and then again when I called my parents to tell them the news. Technically I have one more quiz on Friday (today by the time you all read this) for Policy class and then I am done (Hi Dr. Hoyt).

Therapy: Something I decided I needed very much. After 2 weeks of waiting/searching I was finally matched with a clinical social worker whom I connected very well with and am very happy to speak to a professional whom I am not related to. This also brings me great relief.

Boston Ultimate Formal: happening tonight 12/9 – I have been approved to drink 1 glass of wine. YOLO.

Dec 22nd: Believe it or not, (I don’t), I am turning 30. Yes I said “thirty.”

Incoming Shameless plug for Lege’s band: My very talented boyfriend, Lege and his amazing band Baeja Vu are playing a much anticipated show to celebrate the release of their EP on my birthday (Dec 22) at Thunder Road Music Club in Somerville. EVENT DETAILS HERE. I highly encourage you all to come especially if you like soul/hip-hop/funk/jazz and have any dancy bone in your body.  I will be there with an entourage (they don’t know it yet, but will soon). $10 @ the door. ages 21+.
Listen to a few of their tracks on Spotify or watch their submission to NPRs Tiny Desk. Or generally just follow them on social media: Instagram

Hanukkah/Christmas: The Freedman clan has graciously offered to take this lonely jew into their already crowded abode for the holidays. Excited to hang with everyone when I don’t have ridiculous fevers.

Now-Jan 2nd: NCLEX class and studying like a lot.

Jan 3rd: send good vibes

Jan 8-14th: Lege and I go to Cuba

hit up the timeline for more dates if you so desire

**Special thank you to Cassie Wong for reading this post and convincing me that what I type makes sense and is potentially understandable to other humans.

Update #15: Meet Louise – my masochistic vengeful Liver

Hey all,

Yesterday I had another meeting with new and  current members of my healthcare team. We saw Riley at MGH to check my labs (namely my liver function tests[LFTs]) and then also to go to a new building to meet a new member of my healthcare team, Dr. Carolan – who is a young gregarious Liver/GI specialist. I thought it was funny that he palpated before he percussed my abdomen  (but maybe he knows something we don’t? probably  -that’s for all my homie NP’s in training).

Because I have limited time to explain everything I’m just going to bullet point it all.

  • My LFT’s were actually still trending upwards (AKA they were higher) than when I was last seen on Monday (ALT went from 114 to 285; AST went from 154 to 318; and alk phos dropped a tiny bit to 179
    • This was surprising and borderline upsetting to me.
    • This  points even more towards autoimmune hepatitis being the cause to all my fevers and all my crazy liver enzymes as an adverse side effect of Ipi treatment
      • Autoimmune Hepatitis: pretty much means the Ipi got a little confused and made my own t-cells (immune cells) start attacking my liver cells. It is not an infectious form of hepatitis.
      • You can bet that I will be Louise (from Bob’s burgers – see Update #14 for explanation) for Halloween next year, although it seems my liver is already there.
    • It could potentially mean I will be on prednisone longer than anticipated
    • Riley was actually talking about infusing me with IV prednisone yesterday since my labs jumped up about 100 points each, but since we were seeing the liver specialist right after she left the decision up up him, thank god. He decided that we should give my liver a week on the 60mg of prednisone before we jump to IV infusions/or increased/other meds.
  • My bilirubin, albumin, and total protein were still normal, which mainly means my liver is still functioning appropriately, even if there is damage. Yay!
  • Monday Dec 5th: Liver Biopsy – here we will find out for sure what damage has been done, if there is any damage, and just basically get more information about my liver and how long I am going to need to be on prednisone. Dr. Carolan will be doing all this.
    • there is a small possibility my liver is just overwhelmed (like it was with interferon) and not actually damaged, but this seems unlikely at this point given I was already on the highest dose of prednisone for 4 days (not my words).
    • the results won’t come in until the following Thursday so during that time I will still be taking prednisone and monitoring my LFT’s
    • Dr. Carolan gave me a ball park of about 6 weeks on prednisone – but said we can start to taper if we see any significant drops in my LFTs
    • Also just a note, you have to taper prednisone slowly, otherwise you are at risk for the fevers, liver inflammation to come right back. That’s why prednisone is such a bitch.
  • Good News:
    • My thyroid levels (TSH and Free T4) all went back to normal, so we are just monitoring those for now and no need to medicate! My dad and I think that my thyroid will be fine in the long run and was just under some stress there from, well, all the stress, last week.
    • my platelets and blood counts are back to normal!
    • Thanks to prednisone, I can stop taking antihistamines around the clock and no itchies!
  • Me on Prednisone:

    • I must admit that I was a little dramatic in my last blog post. All those side effects can happen from prednisone but most of the bad ones happen after several months, so hopefully won’t happen to me if I am only on Prednisone for 6 weeks… we’ll see.
    • What I am experiencing now:

      • mood swings: according to Lege I am like “a guest writer that has taken over his favorite show.” He seems to enjoy it, and he’s handling me better than I am able to, which is one of the reasons why we are the best together.
      • I am cycling rapidly through all the spectrums of emotion – namely agitation, excitement, wackiness, sadness, love, depression, and motivation. I imagine myself on a miniature bipolar roller coaster, but mostly I am getting shit done, even if it’s not the most important shit I should be working on (like this blog post).
      • Thanks to my lovely doctors I am able to sleep at night, they updated my medication. Time seems to be moving very quickly so without it I could probably be up all night trying to finish my papers.
      • I will likely experience some water retention and maybe some other side effects – which I am sad will be happening over my 30th birthday and trip to cuba but ya know it could be worse – it could have happened while I was abroad!
  • My outlook:

    • You know out of all the adverse events that could have happened on Ipi, autoimmune hepatitis is not the worst! I am glad that I didn’t have major GI issues like colitis (inflammation and/or perforation of my intestines which is life threatening and requires many weeks admission to a hospital as well as surgeries). I may have lucked out with a week of high fevers/night-sweats and a very cranky liver with some time on prednisone.
    • We believe that Ipi has done its job (clearly) of awakening and activating my immune system. I have blind faith that while Ipi was attacking my liver, that it was also attacking Melanie and I am confident we won’t see her again, or at least for a long time. Again, this is just a feeling I have. All we can do now (after we get all the liver stuff settled) is just continue with 3-4 month scans and blood work for the next 5-10 years.
    • In the adjuvant Ipi 10mg/kg trial, recurrence-free survival was ~41% and overall survival was 65.4% (even those who only tolerated 2-3 infusions like me) after 5.3 years. Those statistics are much more favorable than those in the control group and also more favorable than my previous statistics with and without interferon. However, like I said, I am willing to bet I’ll be alive for a lot longer just out of sheer will alone.
    • I am so full of love for everyone who’s been a part of my journey thus far. Thank you for your continued support as I schwam my way through this crazy life of mine.

 Other stuff/dates:

-Ultimate: Believe it or not I was approved to play in a small 1-day mixed gender fun tournament on the Cape called Get Ho Ho Ho with pretty much all of my ultimate friends in the northeast this saturday. I usually go every year (missed last year thanks to school), but I will be there and I will be sober as a bird (unlike anyone else, except Lege who will also be sober but silly, as per usual). I haven’t moved my body other than biking to class and walking around MGH so I am excited to run a little, sweat, a little, and laugh a lot for a day/evening. I am sure I will have great pictures to post on the next blog post. For now, here is some throwback terror twin action from nationals.

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My “terror twin” (Lauren Sadler) and I causing general chaos to any and all situations involving order. My Liver, Louise seems like she wants in on the fun.

-Liver biopsy on monday  12/5 at noon. I have to stop eating/drinking at midnight the night before so I’d reccommend not coming near me with food or drink before then (I have to go to class in the AM).

-Thursday 12/8: Labs with Riley/Dr. Lawrence and f/u with Dr. Carolan with biopsy results and to find out how goddamn long I need to be on prednisone.

see my timeline for more info and I’m sure there will be more updates next Friday.

much love & fuck cancer,

Schwambomb, Schwam, Lany, Elana

Update #14: Major Changes – Prednisone, Liver Biopsy, and Discontinuing Ipi

Hey Everyone,

There are a lot of new and exciting/terrifying updates in this post. I really wanted to write this blog post myself but as you know, It is the end of the fall semester (AKA hell on earth) and after being completely useless for 7 days, I am way behind on school work. So, I have asked my dad – Dr. Eric Schwam, to step in and help write another guest post for me. I have also added in some blurbs of my own which will be labeled, and italicized teal font in order to avoid confusion.


Dr. Schwam:

We met with Dr. Lawrence and Riley yesterday and there are some new developments.  After a week of fever, shaking chills, and night sweats, Elana is swamped with schoolwork, so she asked me to write this post for her.

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