Patients & Survivors: Your Brain Tumor Journey

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Patient Stories

Explore inspiring journeys of resilience and hope through our Patient Stories

Episode 19 of the Rare Enough Podcast: Matt Anthony

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

2024 SNO Conference Recap

Written by Ross Gregory, Head for the Cure Staff Member The Society for Neuro-Oncology (SNO) Annual Conference in Houston this November brought together a vibrant community of researchers, clinicians, innovators, and advocacy groups passionate about …

About Recurrent Glioblastoma and the ReSPECT-GBM Clinical Trial

Recurrent glioblastoma, sometimes referred to as glioblastoma multiforme or simplyGBM, stands as one of the most aggressive brain tumors known to medical science. Itis a malignancy that relentlessly invades the brain, presenting a formidable challengefor …

About Leptomeningeal Metastase and the ReSPECT-LM Clinical Trial

Leptomeningeal Metastases (LM) is sometimes referred to as leptomeningeal cancer,leptomeningeal disease, neoplastic meningitis, or meningeal carcinomatosis. This rarebut serious condition happens when cancer cells spread to the membranes surroundingthe brain and spinal cord.  Leptomeningeal Metastases is …

December 2024 Ambassador Spotlight- Naomi Olivarez

Written by Naomi Olivarez I’ve had the honor of being involved with Head for the Cure for what will be ten years next September of 2025. I first joined in 2015, the year my son passed away from stage 4 glioblastoma multiforme, and I haven’t missed a single event since. To say it was a difficult time is an understatement. All I wanted was to find a place where people could understand my pain and where something good could come from such a devastating experience. Watching my son endure things I’d only ever heard about in commercials was excruciating. Equally …

Episode 18 of the Rare Enough Podcast: Featuring Luke Anderson

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

The Role of OT in the Rehabilitation of Brain Tumor Patients

Occupational therapy (OT) helps brain tumor patients do the tasks they need or want to do to get through the day when faced with physical, cognitive, or emotional changes. OT takes a big-picture view of …

Problem-Solving Strategies for Brain Tumor Patients

In some cases, brain tumors can affect a person’s problem-solving abilities. This can happen due to the tumor itself or as a result of the effects of standard treatments such as chemotherapy or radiation. Rehabilitation …

Seizure Preparedness and Management

Seizures and Brain Tumors Seizures are a common concern for many brain tumor patients due to changes in brain function. Seizures can result from the disruption of normal brain activity caused by brain tumors. Knowing …

What is the Karnofsky Performance Status (KPS) Scale?

The Karnofsky Performance Status (KPS) scale is a tool that helps doctors measure a person’s physical abilities, independence level, and how well a person can manage daily activities when dealing with a chronic illness, particularly …

Patient Stories

The Role of OT in the Rehabilitation of Brain Tumor Patients

Occupational therapy (OT) helps brain tumor patients do the tasks they need or want to do to get through the day when faced with physical, cognitive, or emotional changes. OT takes a big-picture view of …

Problem-Solving Strategies for Brain Tumor Patients

In some cases, brain tumors can affect a person’s problem-solving abilities. This can happen due to the tumor itself or as a result of the effects of standard treatments such as chemotherapy or radiation. Rehabilitation …

November 2024 Ambassador Spotlight – Erin Gaffney

Written by Erin Gaffney I’ve been fortunate to serve as an ambassador for several organizations.  I joined the Executive Leadership Committee for the American Heart Association to raise awareness for heart disease.  I participated in …

Episode 17 of the Rare Enough Podcast: Featuring Brian & Emily Godawski

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Episode 14 of the Rare Enough Podcast: Featuring Michael & Vanessa Hugo

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Embracing My New Patient Identity

The thought of embracing my new identity as a brain tumor patient was a daunting journey filled with uncertainties and challenges. However, it was essential to remember that my identity is not solely defined by my medical condition. While it undoubtedly plays a significant role in my life, it doesn’t overshadow the other aspects of who I am as a person. Here are some steps that helped me navigate and embrace my new identity:Acknowledge Your Feelings: It’s okay to feel a range of emotions, including fear, anger, sadness, and even relief.

The Importance of Prioritizing Yourself as a Person Over Your Identity as a Patient

In the journey of facing a medical condition, it’s easy to let the label of “patient” overshadow our sense of self. Whether it’s a chronic illness, a sudden diagnosis, or a long-term treatment plan, the identity of being a patient can consume our thoughts and actions. However, it’s crucial to recognize the importance of prioritizing ourselves as individuals over our identity as patients. Here’s why:Preserving Self-Worth: Being a patient doesn’t define your worth as a person. It’s essential to maintain a healthy sense of self-worth independent of your medical condition. Remembering your talents, strengths, and qualities can help you maintain …

Regaining a Sense of Self as a Brain Cancer Patient

Being diagnosed with a brain tumor is an overwhelming experience that can turn your world upside down. Alongside the physical challenges, the journey often takes a toll on your emotional and psychological well-being, leaving you feeling disconnected from your sense of self. However, amidst the chaos, it’s crucial to remember that you are more than your illness. Regaining a sense of self is a fundamental part of the healing process, and it’s entirely possible with the right approach. Here are some tips to help brain tumor patients reclaim their identity and find inner strength during this challenging time.Acceptance and Self-Compassion:The …