Head to the Hill 2024: My First Time Attending Head to the Hill — What a Transformative Experience
Discovering a New Tribe: The Power of Head to the Hill
My first time attending Head to the Hill was great! So, what is this event? It is where brain tumor survivors, caregivers, and advocates converge on the US Capitol to champion funding and research. Little did I know, this journey would lead me to discover a newfound tribe, a community bound by resilience and shared experiences.
This was my first time and I was anxious to attend and did not know what to expect. Initially, I told myself I would come to listen and learn. Yet, after the first day, I realized two things: first, I forgot my brain tumor medication (so luckily I had my travel Tylenol for the anticipated headaches due to not having my med until I got home — plus I did not want to order an emergency pill since it would complicate my prescription delivery dates and having to transfer it back to my home state — it is a whole thing) and second, I realized this life journey led to one of my tribes in my life’s journey, the National Brain Tumor Society. (By the way, the other tribe I found many years ago in my life’s journey was Women’s International League for Peace and Freedom, advocating for human rights).
I no longer felt this isolation dealing with my brain tumor condition. There are those at the event advocating for their loved ones who they lost to a brain tumor. And there were those of us like myself who were survivors. It really dawned on me the number of survivors at the conference. We were few but powerful in vocalizing our stories.
Breaking the Silence: Sharing My Story
I was always apprehensive in sharing my story, even when I posted it online for Rare Disease month this year, especially since some people thought when I posted my Rare Disease month video I was trying to gain attention or lying that I had this rare disease. However, after sharing my story, those negative experiences were totally outweighed by the good experiences. In fact, I was encouraged by the National Brain Tumor Society (NBTS) to become an advocate and share my story. So, that is what I did, I embraced advocacy as a means to amplify our collective voice and drive progress towards finding a cure for the myriad of over 120 brain tumor types.
A lot of people who knew me (or of me) did not know I had this condition prior to the Rare Disease month video. Yet, unknown to many people, I was a part of the National Brain Tumor Society’s online support group since 2023. I also utilized its patient navigator services when I was changing doctors and these services really helped me navigate the situation. For many brain tumor patients, switching doctors is a very real and scary situation for a brain tumor patient as patients have to reintroduced themselves, their condition and hope they are heard, listened to and proper care and guidance is being provided. It goes without saying that NBTS’ services have been a blessing to me.
[My therapist suggested I try a support group for brain tumor patients and caregivers. My therapist provided a few options and I chose NBTS since it seemed more active than most patient advocacy organizations out there. I truly thank my therapist for this suggestion. It has created such a wonderful addition to my life.]
Finding My Way: A Journey of Connection
My first online support group meeting I kept my camera off out of not knowing what to expect or how I would be received. Remember I have been through so much stuff in my life between the targeting and now this brain tumor condition (and I was a person of color and I did not see many people like myself with this condition). So I wanted to test the waters to make sure it was a safe space for me (and it was). Stepping into this space, I was met with understanding and compassion, and connections that transcended societal boundaries that so often separate us.
The group’s stories and experiences and determination to advocate for funding and research on brain tumors motivated me to share my story for Rare Disease Month, along with someone I coincidentally bump into online who was a female exec with a rare disease. This motivated me significantly to share my story so that the medical community and other patients could learn from my experience and motivate positive change to get a cure for brain tumors. Plus with the pain from the headaches I use to get on a frequent basis, along with the anemia that was induced due to the brain tumor (and potentially life threatening issues that could arise if the tumor is not controlled), I did not want this to happen to anyone else.
Empowering Advocacy: From Awareness to Action
Again, when I got to the Head to the Hill conference, people were so understanding and compassionate. I cannot emphasize this enough. Even the people at the hotel were compassionate. It goes without saying but I was encouraged to share my story, though I was hesitant and never really publicly shared my story in person. However, I knew after meeting others at the conference and realizing I was the only survivor in my state constituent group, I had an obligation to share my story, as others lost their loved ones and were fighting for funding and research so that brain tumors are no more.
So, the conference helped me in many ways. I was able to build and create community and advocate for more funding and research for our brain tumor community. I was also able to meet some of my online support group members in person. Moreover, I met researchers and the staff and board members at NBTS, all of whom are extremely dedicated to our cause. Surprisingly I met a few people of color who were survivors. In fact, I learned two of them were also my sorority sisters through Delta Sigma Theta Sorority, which was very nice to connect with.
Surprisingly, I actually found my ‘tumor sister’ at the conference. She is also a survivor of the same brain tumor type I have. We share similar experiences. She got me! Who would have thought in a million years I would have found someone with my tumor type as it is so rare (and typically other types of brain tumors take up the medical discussion space a lot)? Out of the over 120 types of brain tumors, pituitary tumors are often forgotten about, but it is a brain tumor.
[Our type of tumor is also rare like many of the over 120 brain tumors and there is no cure. Though our tumor type is benign, it is still dangerous and life-threatening especially if the tumor is not controlled. This means that even though we may get the tumor under control (i.e., in remission) through medication, surgery and/or radiation (which many of these benign brain tumor treatments mimic, in some ways, cancer treatment approaches), the tumor can still come back. Doctors I have spoken to have stated that our type of tumor typically comes back. Lifelong monitoring of the benign brain tumor is required.]
During our advocacy sessions with the Congressional staffers and one State Representative, who was so kind to take the time to be physically present to hear our stories and our asks, I shared my story about how my condition was not taken seriously and how I had to advocate fiercely for answers. It was not until my gynecologist found the brain tumor. I also shared that after receiving the brain tumor diagnosis how one endocrinologist was very well educated in this and acknowledged very early in the stages of my doctor-patient relationship that it was a brain tumor and incorporated both a holistic and medication route, based on the current research. While unfortunately, from the first encounter with another endocrinologist, they instantly shut me down and said it was not a brain tumor. Though I know the endocrinologist was being helpful, she never acknowledged my comment as a possibility.
At the conference, I learned that there is a disconnect among some medical professionals in the community. These rare diseases are often not the focus in medical training, which is why we need more funding and research and awareness. Also, some medical professionals do not really understand the extent and dangerous nature of brain tumors as well as the over 120 types of brain tumors, and these medical professionals could be really useful in identifying early signs of brain tumors to help the patient’s health outcome. Hence why one doctor acknowledged it as a brain tumor and performed research on this to know what has been effective and not so effective in treating this tumor, while another did not acknowledge it as a brain tumor.
I also shared how my brain tumor could have been totally avoided, especially if there was research available at the time I initially showed signs of the tumor (many years prior) and that the research that was available was not behind a paywall. Did you know that a lot of medical research is hidden behind paid databases that some medical professionals may never look to search?
Also, I shared how quality of life matters for brain tumor survivors. While I do not look like what people think brain tumor patients should look like (to many people), as my brain tumor condition is managed through medication and does not limit my life functions, I still do everything I did before. I am physically active like anyone else and I enjoy the same things I did before. I am grateful and do not take it for granted at all. Yet, do not let that fool you. There are still quality of life issues like the life threatening conditions potentially triggered due to the brain tumor if the tumor is not controlled as well as the treatment to cure the brain tumor is difficult for any brain tumor patient as getting the medicine or treatment to the brain is one of the most difficult to treat due to the brain barrier.
Also, other quality of life issues include insurance (e.g., medical, life and long term care planning). Like cancer patients, do you know that once diagnosed with a brain tumor you can be denied life insurance if you did not already have life insurance? Did you know that one of the few places to obtain life insurance and long term care planning is through a person’s employer or a loved one’s employer? Did you know that not all insurance companies pay for certain treatments?
The reality for most brain tumor survivors is that many survivors continue to work and live a fruitful life and desperately hang on to their jobs as this is the lifeline to their livelihood. So when their livelihood like employment is attacked, eliminated, terminated or they are laid off or avenues like life insurance are denied, it is a quality of life issue as survivors still experience issues and must maintain a top quality of life to live a long, healthy life.
Reflecting on Resilience: A Journey of Growth
As I navigated the conference, I confronted the complexities of my own journey — a journey marked by challenges and resilience. It was a reflective 3 days at the conference for me. Before my brain tumor diagnosis in 2021 and about a year or so prior having an e-coli poisoning scare in 2019, I was in relatively good health all of my life, with the exception of having an inherited sickle cell trait which never caused an issue for me. I have been tall and slender pretty much most of my life. I do not have a risky lifestyle and never had, I do not drink or smoke (and it is by choice and not because I have or had some type of addiction). As I tell my friends all the time, I get high off life! For real!
I was the one in my family known to never get sick and never had any illness. Everyone in the house would get sick except me. It was the weirdness thing for real. In fact, I never got COVID (that I am aware of) and even if I got a cold or had an allergy, I instantly recovered and healed quickly, like it never happened.
Needless to say, I am grateful for all the individual therapy I attended over the years. After coming to the conference, I knew I had processed the reality of this brain tumor and all the challenges that led up to that moment. I had forgiven people in my life who caused harm to me. I had come to grips that my condition is something I have to take seriously and constantly do better in improving my quality of life and to live an even better ‘best’ life than I have at that moment.
Through therapy and the unwavering support of loved ones, I found the strength to confront my reality of this brain tumor and embrace a path of healing. I saw people there with their loved ones who were survivors and some were partners of the survivors. I was so glad to see this as it gave me hope.
Championing Change: Advocacy Beyond Barriers
So, coming to the conference was a real first step for me in coming to terms with this very real life condition and knowing that I was in this alone. But I realized I was not alone as I found my tribe. And throughout my first experience at the conference, I also had a friend I reconnected with, who lived in the DC-MD-VA area and now works for the US Department of Homeland Security. Due to the sensitivity of her job, I will not disclose her identity or very much details.
We met up and had a great time reconnecting and with her and her children, though we communicate on a regular basis but never really physically seen each other in nearly maybe 7 years. My friend recalled that we met nearly 10+ years ago doing advocacy work and now we were both at good places in our lives. She reminded me good things do happen to good people. She was now working in the US Department of Homeland Security doing very important, sensitive work, while I have excelled in the life sciences and recognized as one of few women in biotech to achieve an executive level status. As she said, the science does not lie as to why we ended up friends for over 10 years now and have achieved what most people have not been able to achieve. She reminded me that was not by chance, or luck or being lazy, but that I earned it the right way and I work hard for what I do, and people like me do not just stop working hard. It is ingrained in us.
She also reminded me there were people cheering me on and not only watching the not so good things people are doing but the good things people are doing in my life. She said the things I have been able to achieve and overcome should be studied and applauded as I was not suppose to be here as not many people make it out what I have experienced. She said I motivated her to be her best self and live her best life and to continue to do for others. This meant a lot to me. I was not expecting any of that. I knew that coming to this conference was something that God, universe, source, spirit (whatever you call it) led me here to hear that important message and see others like myself fighting and advocating.
People sometimes ask me why I am so nice and kind and sometimes they think it is a catch with me. But, if you ask my family or friends who really know me, this is who I am. I was that kid who was friends with everyone and also bullied because I was different in that I was kind and did not fight back because I saw through the differences and embraced people. I was also that kid that bought the “We are the World” cassette tape for show and tell in elementary school. Yes, that really happened (I was really that kid). I really believe in humankind and peace and harmony.
People sometimes ask what is the trick: there is no trick. What I think has been key for me is that I see myself in others and when I do, it makes a difference in treating people with kindness. When we choose violence over kindness, harmony or compassion, we are definitely not seeing ourselves in others. When we see ourselves in others, we can see we are all trying to live a quality life and maintain our livelihoods. So, choosing micro aggressions, bias, hate or anything other than kindness, harmony or compassion is basically lessening one’s livelihood and diminishing the dignity we all deserve.
The Call to Action: A Vision for the Future
I learned so much in this conference that I did not know before. Like did you know that service members are 26% more likely than the general population to develop a brain tumor due to the dangerous conditions they serve in? This is one of the many reasons why the US Department of Defense is doing massive research on brain tumors (both for adult and pediatric brain tumors) to prevent this from happening and cure people. This is another reason why funding and research is so important. Brain tumors affect everyone, in all age ranges and all backgrounds. It can happen to anyone. This is not a political issue.
What our asks are from the US Congress: (1) support and sponsor the Bolstering Research and Innovation Now Act (also called the BRAIN Act) (2) increase transparency of federally-funded biobank collections so that researchers are aware of others who possess samples that might be shared to enable important research (3) sufficiently resource the National Cancer Institute’s Glioblastoma Therapeutics Network, so that it can realize its promise of vetting treatments and completing innovative early-phase clinical trials (4) enable team science to advance immunotherapy research (CAR-T) engineered to attack brain cancer cells (5) Direct the Centers for Disease Control to conduct a public education campaign around the importance of clinical trials and biomarker testing in cancer treatment and (6) Augment and expand funding to develop innovative systems of care models for brain tumor survivors.
This conference emphasized respect, dignity and compassion is needed in the world. If we can put as much resource, research and funding into brain tumor research as other things, we can solve the issue once and for all and solve other diseases in the process.
#Head2Hill #JuliosBrain
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