Tag Archives: skin cancer

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

 

 

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!