Graduation & The Blog: 4 Years Later

When I started college four years ago, I was a shell of a person. My surgery had taken place less than a year prior, and I felt it. I really, really felt it. Fifteen minutes of a reading assignment required a nap from brain exhaustion. So did having lunch with friends in the noisy dining hall, a fishbowl of voices coming from every direction. The flashbacks to the awake portion of surgery were overwhelming, and I think that they were one of the hardest parts to push through.

While I found a way to camouflage my needs in the classroom using tan earplugs to muffle the extreme noise sensitivity and audio recording notebooks to help with memory retention, some professors lacked tact in assisting with my accommodations. The awkward instances of direct mention that the class notetaker was for me, while initially bothersome, eventually became a good segway for the ultimately necessary conversation about my health history with new friends.

I wanted people to know about my surgery. They needed to know it in order to understand me – and, to know why I wore ear plugs everywhere. Now, almost five years later, they still need to know, even if I don’t wear the earplugs anymore. The difference between when I started college and now is that back then, I thought my limits were deal breakers or opportunity enders in all the wrong ways. I didn’t think that I could go out with friends, or participate in anything outside of the academic arena because I wouldn’t have the energy or excitement levels to keep up with peers. Now, I realize that my limits are actually opportunities in themselves, and that my activities of daily living and otherwise just take a little bit more thought and extra care and thought than most others. The need to nap isn’t something to be embarrassed about. Oftentimes, people are actually jealous that I’ve arranged a schedule or figured out how to manage a life that fits in time for a nap now and again!

What strikes me the most as the biggest difference between four years ago and now is the ability to imagine a future. I didn’t make plans farther than a few hours in advance during my freshman year. I couldn’t even comprehend the following week. I illogically didn’t think that I would live to see that long. Flashbacks to surgery and fear of recurrence controlled everything I did. Selecting courses for the next semester seemed trivial for the first two years of college because I was that certain of a recurrence. The MRIs, switching seizure medications sophomore year, and figuring out what to do when seizing in class were so confusing and exhausting that planning for a life outside of medical mayhem just didn’t seem possible. Then, something just changed. My brain chilled out, the new meds started working, I seized less, and I hit my life, health, personal, and academic stride. The flashbacks and fear eased, and I was able to be a more typical college student – at least, in ways that made sense to me – and started to look ahead.

Two weeks ago I graduated the healthiest and happiest in my life.

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Image description: A college graduate wearing a maroon cap and gown with two sets of tassels and a medal. Their black shoes and pants are visible underneath and are holding a maroon diploma case while standing in front of a large, gold colored 2017 block letter statue with the number 20 stacked on top of the number 17.

Not only did I graduate, but I did so with a 3.99 GPA from the honors college, and was awarded the most outstanding thesis in my college. I had the opportunity to work in multiple child development labs, and be funded to conduct my own patient population research outside of the university. That research is now being utilized by that community’s lead national organization as well! Next up is my MSW with a health concentration out in Seattle starting in the fall.

I saw my neuro-oncologist here in Arizona yesterday, and she told me the wildest thing: she’s retiring to go and open up a breakfast food truck in rural Arkansas! She said that she has worked every day of her life since she was seventeen, and even though she could certainly work in the field longer (she’s just under sixty), she wants to go and do something more fulfilling in her personal life. This choice was inspired by an epiphany she had after organizing a family reunion out there last summer, and I couldn’t be happier for her. She’s a world-class name in the neuro oncology field, and she’s exchanging her scrub cap in for an apron and skillet. The stress melted right off of her face when she started talking about the truck (The Peck & Egg) named after what her mom used to call sunny side up eggs, for anyone wondering. She also cleared me for annual scans, and gave me names for referrals in Seattle.

When I first started this blog, I did so with the intent of creating something that future brain tumor patients entering college could look to and say, “You know what? This is doable. I can make this work.” in the context of college and chronic illness. I also used it as a way to track and update a large group of people about my health all at once, while simultaneously sharing what I had been up to and learned at conferences. Many students, parents, and fellow patient advocates have reached out to me after finding this blog, some of whom I’ve even had the privilege to meet up with in person.

I don’t know if I will continue this blog going forward, though. I struggle with this decision, as the brain tumor community has so few people and stories available as is. How I feel about this blog right now is similar to how I felt about the video updates I recorded for the first nine months or so after my surgery, eventually setting their access to private. Recording the videos as updates and documentation were what I needed, until they weren’t. Eventually they weren’t what I felt anyone else really needed to see unless it was a contextual teaching moment, in which case I shared direct links to specific videos, some of which I’ve linked within posts on here before.

You don’t grow up and out of a brain tumor, but, you may reach a life stage where this identity can take more of a back seat in your life. I am wondering if I am at that point right now. I do know that I will maintain #BTSM Chats and other related projects. The #BTSM community showed me that our medical experiences have meaning outside of ourselves, and I am continuing to explore what that meaning means for others and myself. These connections run so deep that I am even attending the wedding of one lovely chat participant at the end of July! With that being said, I am also now finally at a point to have multiple other parts of my life that portray meaning outside of this health identity. I’ve spent the past year exploring these parts more than I ever have before, and like I said, I’ve also had the happiest and healthiest year of my life. And that – that is something that can’t be ignored. It means something.

Hospice and Palliative Care 2.0 – CCCC

All of us do it. Literally 100% of us die.

That death doesn’t have to be full of pain and suffering, though. Marta Friedman, LCSW from UCSF remarked during one of the office hours sessions that, “Almost any moment can be a palliative moment.” It’s true.

My favorite session at the Coalition for Compassionate Care of California and Children’s Hospice & Palliative Care Coalition 9th Annual Summit was Defining, Evaluating & Articulating Social Work in Pediatric Palliative Care. The biggest realization I had during the session was that when children ask, “Am I dying?” it’s a social worker’s job to try and get to the real question of what the child is wondering about, and more often than not that’s really about a symptom, a parent’s behavior, or change of environment. I also really liked how this group of highly intelligent women talked about being “generalists,” and having to understand all disease continuums and processes across care. That’s quite the responsibility.

The panel that I spoke on with Rachael Goldring went extraordinarily well, and received nothing but positive feedback. I think that this largely had to do with the different energies we presented the audience with, as well as how opposite our stories and experiences with (or without) palliative care were. My final message for the audience in regards to talking to pediatric patients about palliative care was to ask early, ask often and ask gently. You can view the panel here by starting around 51 minutes into the stream.

Rachael’s perspective was that not telling a pediatric patient everything about their care is the worst thing you can do as a provider, but I countered her statement to remind audience members that there really is no one size fits all recommendation here, as some patients are information seekers, others information avoiders, and that the use of developmentally appropriate language during disclosure is critical. I also asked those in the audience to reflect on Dr. Zitter’s recent column about the necessity of Death Ed with Dr. Dawn Gross, and ask themselves why we have sex education, but not death education when both are relevant to everyone’s developmental lifespan.

Dr. Jessica Zitter’s talk reminded me that patients cannot die well if they don’t know they’re dying. They can’t access hospice or palliative care if they don’t know they qualify or even need it. Why doesn’t this get talked about? Well..what do we fear more than dying? Dying badly. In fact, in the information that she presented, 54% of patients said that being dependent on a breathing machine or ventilator would be worse than death.

My biggest takeaway from the conference was probably wrapped up in Dr. Zitter’s talk about medical interventions that are put into place, and while they might be seemingly well meaning, they don’t always produce outcomes that patients want, or even need, really. Sometimes interventions are trauma more than anything. How do we make sure that medical interventions aren’t just trauma? We share what we know as patients.

Disclosure: I receive financial support for travel, lodging, and registration fees for this conference, as well as a speaking honorarium. The views expressed in this post are my own.

Hospice and Palliative Care 1.0

I had the privilege to attend both The Social Work Hospice & Palliative Care Network 2017 General Assembly and The Annual Assembly for Hospice and Palliative Medicine last week. One was planned, and the other was a sneaky maneuver that I could not have done without a little help from Twitter. Once word got out that I was interested in attending the second conference, fellow patient advocates, doctors, social workers, and friends jumped on the wagon cheering me on and offering up solutions for how I might be able to sneak in.

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Within 24-hours an extra pass for me had been located, and I had found my way past security.

There was a plenary session on physician-assisted death, a topic very relevant to the brain tumor community. When I saw that the session was taking place, I immediately thought of Brittany Maynard and her advocacy for the right to die on her own terms in 2014 . I decided to ask a question. I asked, “The brain tumor community had a Twitter chat dedicated to the right to die when Brittany Maynard moved to a different state for the right to have a physician-assisted death because she had glioblastoma. My question is how do you think social media and media attention to physician-assisted death will play a role in this conversation as it continues to evolve?” The presenters in the session responded very thoughtfully, agreeing with each other that this is an issue that they think people are simply going to have to get on board with as time evolves, just as many people have with same-sex marriages.

My favorite session out of both of the conferences had to do with when medical and legal worlds collide and conflict at school. Unfortunately, many schools require court orders from parents or are being sued before they will agree to follow a Do Not Attempt Resuscitation (DNAR) plan for a medically complex child, such as the adolescents with muscular dystrophy that I interviewed for my thesis. This is because parents of other children are afraid of what their children will witness, and because teachers are afraid that they won’t be doing enough to prolong children’s lives if they do not attempt resuscitation based off of personal beliefs. What teachers don’t realize is that by following a family’s Do Not Attempt Resuscitation wishes they are doing exactly what the family wants them to do. Most importantly, do not code does not equal do not care for the child. Comfort care can and certainly should be applied at end of life whether that is at home or in a classroom. There have been a number of cases where schools have actually called child protective services and reported families who have submitted DNARs, causing families to become fearful about expressing their child’s end of life wishes – something that should never happen.

These opportunities to of learn about hospice and palliative care were a great primer for what’s coming up next week: Coalition for Compassionate Care of California and Children’s Hospice & Palliative Care Coalition Annual Summit, where I’ll be speaking about palliative care, or lack thereof, in adolescent and young adult medical experiences. We don’t know what we don’t know, and attending these conferences right here in Arizona was a huge learning experience. I was able to share some of what I had discovered from my own research, as well as add to my resource list for others. I’m curious to see how next week’s conference differs from these two, and in what ways it’s the same given that they’re all taking place so close to each other and on the same overarching theme.

Vimpat Savings Card: Use It

I take 500mg of Vimpat daily. With only 400mg approved by the FDA as the recommended dose, the last 100mg that I take each night isn’t covered by insurance. While my dosing is completely safe, has been monitored by a neurologist for years, and is exactly what I need to keep my seizures under control, the last 100mg still has to be paid completely out of pocket.

Thanks to this patient savings card my co-payments are covered for the entire year of 2017. With that being said, you should look into this savings card for yourself.

Who doesn’t qualify: patients covered by any federal or state funded healthcare program (including, but not limited to, Medicare [Part D and Medigap], Medicaid, any state pharmaceutical assistance program, and TRICARE.

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No, this isn’t some sort of Vimpat promotion or sponsorship..I wish! I just thought that those of you also taking Vimpat would want to know about this money saving option.

A surprise worth sharing

Being here, senior year, is a surprise worth sharing.

I thought maybe I would make it through the first, or second year of college. Then I would have a recurrence, go through treatment again, and die. It wasn’t just a fear; it was statistical and founded in research. Brain tumors are the number one killer of those under the age of 19 and with my tumor type a recurrence within the first two year isn’t all that uncommon. Now at 21, I am graduating college. I have not had a recurrence, and I am stable. My next scan is coming up, but I’m not even worried. In fact, I forgot that I even needed to make the appointment. Whatever happened to scanxiety?

I never thought that I would make it to this point. When I entered my freshman year of college it had been less than a year since my awake-craniotomy. I was still having flashbacks to surgery on nearly a daily basis. My life was living in fear moment to moment, wondering when the next seizure would hit, when I would be told to pack up and come home to live with my parents because I couldn’t safely live on my own anymore. I thought that I would go to school for as long as I could, learn as much as I could, and just try to experience as much as possible for as long as possible.

This didn’t really hit me until I defended my thesis because a thesis is something that people plan for. They start their research early, they select committee members, and they write for years. I did so, but I didn’t expect to actually follow the plan through to the end, because I didn’t think that I would get the chance to. The night before I defended I realized how shocked I was to be in this position. It was so…satisfying. The same professor I met my shell-shocked freshman year, back when I couldn’t sit through a film in class because the sound was too loud, was the same committee member that I met with every week this semester to put the finishing touches on my thesis, and the same committee member who saw me blossom into someone who believed in the possibility of a future.

For so long I just didn’t think that one would come. I was so afraid of tomorrow, of next week, next month, the next scan, that when I finally started being able to plan years in advance it seemed beyond my wildest imagination that I would actually get there.

Donate your spit for science. I did.

I did my part to help science this week via spitting in this lil container for The International Low-Grade Glioma Registry. Dr. Elizabeth B. Claus has organized a study with researchers at Yale University School of Public Health and Brigham and Women’s Hospital Department of Neurosurgery to learn more about low-grade glioma (LGG). This study is partially funded by the American Brain Tumor Association and seeks to figure out why some people develop LGG and others do not, the effect of this diagnosis and the associated treatments on daily life including the ability to work, drive, sleep, exercise, or take care of oneself and/or family, etc.

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Any person over the age of 20 years with an initial diagnosis of LGG can participate. The study asks participants to 1) provide a pathology report, 2) complete a 20min online questionnaire and 3) provide a saliva sample that allows them to look at changes in DNA.

Dr. Claus is extremely receptive and responsive to questions, (we have been emailing back and forth for the past week) and is interested in what patients have to say. She’s even considering making a Twitter account to join #btsm! If you fit the requirements for this study (age 20+ and have been diagnosed with a LGG) I beg you to participate. Research on us current brain tumor patients will benefit future patients.

Upload a document. Take the short survey. Spit in a container the size of a contact case..for science.

You can learn more about the study and how to enroll here.

Conversations that matter

This year I was fortunate enough to be asked to moderate a panel at Stanford Medicine X. The panel was called “Ah-Ha! moments in mental health and chronic disease management,” and I used the moment to shine a light on the similarities between patient communities regardless of age and diagnosis. The room for our panel was packed, and had standing room only. Each of the panelists – Mark Freeman, Danielle Edges, Ally Ferlito, and Sarah Kucharski – nailed their responses to questions and so clearly articulated the importance of mental health both in their own lives and in the lives of others within their patient communities.

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We saved time for a few questions at the end, and Christopher Snider pulled one from the live Twitter audience who was tuning in. We also had a physician remind the room how there is simply a lack of training related to patient mental health. His reminder didn’t present as an attack on the panel, but rather as words of empathy and a pleading apology to panelists after hearing how systems have failed and continue to fail some of them. As a follow up to his statement, I reminded everyone in the room how there were several Student Leadership Program attendees present for this session. Hopefully these students – future pharmacists, physicians, and researchers, took away a better understanding of the patient experience. Those attending the conference within the Student Leadership Program (SLP) blossomed, many receiving offers for funding their venture ideas, connecting with physicians for mentorship, and successfully networking amongst other guests. As an SLP Advisor, I felt like a proud parent! It was an honor to help coordinate the SLP program, and to improve upon accessibility efforts. It’s exciting to know that I was one of the youngest people there with very few undergraduate students, yet still tasked with the responsibility and respected for expertise, whether that be as a patient or student. And to think that two years ago I was apprehensive about applying to the program. This just shows that age, degrees, and professional qualifications cannot be substituted for life experience.

Just like last year, I met more people than I can count. But, out of everyone, Elizabeth Jameson stood out as the clear frontrunner as the person who I was supposed to meet. She was a part of the ePatient program as well, and I was immediately drawn to her. Liz was too. elizabethI think that we all had an instant connection. I found one of Elizabeth’s cards on the ground, and can swear that I have come across her artwork somewhere else before. While my admiration of her work certainly opened up the conversation, I believe that we were meant to meet for other reasons. You can see some of her pieces here. Elizabeth specializes in the intersection of art and science, and has secondary progressive Multiple Sclerosis. She and her artist assistant Catherine Monahon have created some incredible pieces over the years, all of which center around her own brain scans, similar to the ones that I have created in the past. I think that Elizabeth’s artwork speaks to the power of the patient voice, and also the reclaiming of one’s condition in a world so focused on fixing and medicating upon diagnosis. Her work is featured in permanent art collections at places like the National Institutes of Health, Stanford University, Yale University, and the Center for Brain Science at Harvard University, and I can only hope that one day we can collaborate on a piece of artwork together.

Friends and conversations had at 2015’s conference have translated into opportunities for 2016-2017, too. I’ll post that update later this month.

Disclosure: This post is one of several as a part of the Stanford Medicine X ePatient Scholar Program – Engagement Track, for which I receive financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

The missing link?

Nurses have always kept me feeling safe when I’ve been at my most vulnerable. Like the time I had spinal fluid leaking after back surgery, and they reassured me that I just needed to stay still for a few days so that I didn’t get a headache. Or the time I had brain surgery, and they helped me stand up for the first time afterwards even though I was secretly afraid. It was nurses who chatted with me when I didn’t have any visitors, or when my parents were gone, and nurses are who I’ve seen gain the trust of the patients who I volunteer with time and time again. I talk about nurses and patients on the oncology floor I’ve spent a great deal of time on here in the context of nurses being connectors and bond builders from day one through puppy photos, turning machine alarms off, and frequent medication administering to build trust and respect.

If nurses are able to connect with patients so well, and have this knack for earning trust and respect, why aren’t there more nurses at Stanford Medicine X (MedX)? Perhaps it’s because they don’t know about the conference, or, perhaps they don’t think that the conference is for them just yet. I think that that may change after this year. A panel is dedicated to this topic of MedX nurse absenteeism, in fact. The panel, “Where are the nurses?” is moderated by Pamela Ressler, and consists of Perry Gee, Beth Toner, and Terry Fulmer. The panel is slotted for Sunday morning, is set to focus on the philosophy of nursing to help contextualize illness from the nurse’s perspective for this year’s MedX attendees. They are using the hashtag #MedXNurses to track conversation throughout the conference. This form of tracking is a great way to keep information and reactions to the panel categorized within the conference, but it’s also a great way for nurses to track the panel outside of the conference, too. I recently got a chance to talk with fellow Student Leadership Program Advisor, Anna Clemenson, RN, about nursing school itself. Her insights on preceptorship, new nurse graduates, and mentoring student nurses got me thinking about the idea of mentorship outside of school and office walls. With the help of a nurse preceptor acting as the “training wheels” on a bike for the first few weeks as a new nurse graduate, Anna was able to function as an independent nurse while also feeling comfortable enough to ask questions. I would imagine that entering a conference such as MedX as one of few nurses would be intimidating – I know that I was very aware of my “patient” status when I attended last year for the first time. If nurses who currently attend MedX could bring new nurses with them to MedX next year as part of a Nurse Leadership Program just as how Anna and I function within the Student Leadership Program, perhaps the number of nurses in attendance for the future would increase. As far as increasing the attendance of seasoned RNs, I suppose we’ll just have to attend or watch the livestream to find really out from the experts themselves – where are the nurses?

Data and demographics are everything. The current demographics of MedX tell us who is present (patients, providers broadly defined, researchers, and technologists). What we need to be focusing on though, is who are least represented. Considering who is least represented, who is most represented, and why that is tells us something about power. It also tells us something about the importance and role that networking plays, given that this conference provides access to so many people with the same health care interests. Before we can draw any conclusions as to who networking is or isn’t important to, we have to think about the cultures that feed off of networking, and those that maybe do not as much. Technology companies and research partners thrive off of who you know and what you can produce given those connections. Can the same be said for physicians? What about nurses? While we are all brought together at MedX to change healthcare, we still have to consider what drives the world outside of the conference, and think about what motivated people to attend in the first place. Is the lack of nurse presence due to the lack of pressure to network? Regardless of if networking plays a role or not, the presence of nurses, or rather lack thereof, is felt. How might non-nurse MedX attendees gain a better understanding of patient care through the perspective of nurses in health care? How might patient care be defined through the lens of the nurse, as opposed to the patient, physician, or researcher, and what key differences in training or experience could that reveal? I’m looking forward to finding out.

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Image description: Woman who has black hair, bands, and a bob haircut is wearing a white lab coat and is holding and feeding a baby with short black hair. Diagonal sign across the image reads: nurses save. Photo courtesy of Susannah Fox.

 

Disclosure: This post is one of several as a part of the Stanford Medicine X ePatient Scholar Program – Engagement Track, for which I receive financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

Four years later

My awake-craniotomy took place 4 years ago today. Things that would have been long-term goals 4 years ago are now just things on my to-do list for this month. Things that I never thought I’d see happen are now daily occurrences, in the best way possible. I got better, but not everyone does. I had a great support system, the financial resources to weigh my options and select my surgeon, and the time to do so. My latest MRI was last month, and everything is still stable. Even so, every day is a tightrope walk of accounting for sleep, taking medication, and managing symptoms. My life wouldn’t be anything like it is now if it wasn’t for this patient experience, and I wouldn’t change it.

Community engagement has always been how I’ve processed. We’re talking about the financial impact of being treated for a brain tumor during tonight’s #btsm chat (6pm PST/9pm EST) – all are welcome to join, share, and learn.

Here’s a video of me giving an update four days after surgery, four years ago for a fun flashback.

What Liz means to me

Liz has taught me everything without purposefully meaning to teach me anything. She has taught me how to advocate for myself in a powerful way – by simply, being myself. She has also taught me about science and policy, about clinical trials and chemo parity in the process. She is the person I would have wanted to be friends with in college but would have been too busy studying to meet.

We pull each other up and propel each other forward in everything that we do. She thinks of the little details that make all the difference (Harvey Milk postage stamps). We talk about when we die. We talk about what that might mean – for ourselves, for our friends, for our families and for our partners. We wonder together. We wonder about science, about research, and about protein powder. She calls me out when I take screen shots during our Google Hangout sessions. Whether she knows it or not, she is an anchor in my life. She learns about other communities and educates her co-workers for me – she’s a full-time ally. Her web design skills are incredible. She’s my friend, my cool aunt, my mentor, and my role model all wrapped into one. She believes in and she understands me. She hates how I text in sentences and hit send each time instead of sending paragraphs with all of my thoughts at once. She believes in me, and she has since 2012 (check out these throwback tweets):

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I was commenting on a post explaining how the brain tumor community has very few leaders, and was in the middle of making the point of how when Liz dies, our community will suffer a huge loss. But I stopped in the middle of my thought pattern. What will I do when Liz dies? It hit me. What do you do when someone who pretty much means everything to you without even meaning to is gone? We don’t talk every day or even necessarily every week, but we are connected. We just know what is going on with one another because we are a part of one another, because we have lived parts of each other’s lives. I don’t have an answer to that question yet, and I hope that I won’t need to have an answer for it any time soon.

I’ve talked Liz through a simple-partial seizure over the phone before. It happened about a month ago, actually. We were both extremely excited and talking about how great a phone call had gone between one of her co-workers and I, and the extreme excitement literally gave her a seizure. She started describing it to me and instead of listening I started talking to her about the homemade lasagna I was eating. I asked the right questions, made sure that she didn’t drive, etc., but talked to her about lasagna instead of the seizure. That was my way of helping. Liz was alone and didn’t have any of the medication that she needed with her, so I told her about my lasagna until someone else arrived to try and distract her. I don’t know if I’m going to be able to ever eat lasagna again now. Then, a few weeks ago, I had a seizure at the gym. Naturally, I texted Liz about how weird it was that we had both had gym-seizures. That’s just what we do. We have gym-seizures and we tell each other about them. It’s just another day in our lives, I guess.

Liz helped me realize that it was going to be ok when it wasn’t. When we first met in person in March of 2015 it was like seeing an old friend for dinner. Because that’s what it was, really. We had talked on Twitter, texted, and Skyped for three years at that point. We got dinner while she was in town for spring training with her husband Brett. She designed the #BTSM Chat logo with the orange theme color because she loves the San Francisco Giants, and even though orange is my least favorite color, I signed off on it. I hate baseball, but Liz loves it. Liz was in a punk rock band in college, and that’s, well, that last thing that I would ever do. We are so different and yet we are so much the same. We just get each other.

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Charlie Blotner (age 21, present day) and Liz Salmi (age 18, 1997), pictured making the same tilted head pose, wearing blue and green collared shirts in the closest dated photo that Charlie could find

Relationships like these form once in a lifetime.

Happy birthday, Liz.