Today I am going to introduce you to a woman who has inspired me and countless others during the course of her brain tumor journey.
Samaria (Sam) Hunter is a U.S. Navy Retiree and brain tumor survivor. A few years ago she founded Winks from God! a grassroots non-profit organization providing support to brain tumor survivors and caregivers.
As many of you know, my brain tumor caused me to lose my career. It took a long time for me to accept that loss and my life without the work that I was so passionate about. In that way, our journeys have been similar. We both had to face and overcome the mental and emotional components of our disease. Eventually, we found ways to redefine ourselves and both of us are now seeking to help others traveling on this path.
Sam said, “after surgery, I was anxious and needed to reclaim my life. Exactly one month after surgery, I ran my first mile. My husband was not fond of that but for me, it was the start of returning to ‘normal.’ At six weeks, I returned to work. I had a great job with a great team, and it was another part of me that I needed to reclaim to overcome the challenges of my brain tumor. I simply did not want to give up any part of my life. I saw the brain tumor as a speedbump and not a roadblock that would have required me to shift course. Yes, there were obstacles! I could not drive. A coworker graciously picked me up for the first five months or so. The good thing about that was I was forced to leave work on time and not overextend myself as I often did before my diagnosis.”
However, as soon as Sam was driving again the time she spent at work slowly started creeping up. “About a year after my return, it was determined I needed radiation. Although my brain tumor, a Meningioma, was benign, it had been there years before discovery. As a result, while growing in my right frontal lobe, it had grown tentacles (as I call them) that could not be removed during my craniotomy. A setback, but I was not ready to let go of the life I had spent years building. I worked half days during my 30 rounds of radiation because there was a major event that I was largely responsible for and I wanted to believe they needed me there. I did take off a couple of weeks after treatment to help restore my body. By the end of the treatments, I was absolutely fatigued.”
Unbelievably, Sam ran/walked the Marine Corps Marathon three days after completing radiation in honor of a Shipmate, Terri Bradshaw, who passed away a few weeks earlier from a brain tumor.
Then Sam returned to work for a few months. “It became obvious that I would need to make a decision about my future. However, I did not go willingly. I started seeing a neuropsychologist a few months after radiation and he made the decision for me. My job was too stressful, and my health was more important. Sometimes you just must hear from someone else before you can accept it. He recommended I take a class or do something to keep my mind active. I probably took it a step further than he expected. I enrolled at William and Mary in their Executive MBA Program. Although I was not new to graduate education (it was my third Master’s degree), it was much harder this time around. I refused to quit. Even when my doctor wanted me to consider dropping out, I could not. Like most things I start, I needed to finish. I, also, knew an MBA, would help me in my effort to set up a non-profit. I visited a lawyer (with my head wrapped up because my scar was still healing) and registered Winks from GOD! a few weeks after my craniotomy. Literally, before I returned to work. I was moved by the support I had received and needed to pay it forward. However, my plans were put on hold after it was determined I needed radiation.”
Wendy: Hi Sam. I’ve been following your brain tumor journey the last few years so I know about some of the obstacles you’ve had to overcome. I’ve always admired your perseverance. As you may recall you even gave me permission to create a blog post, “Once the scars are gone” based on something you wrote in June of 2018. Can you please tell the readers about your experience, what led to your diagnosis, and how you got from there to here?
Sam: Running, not only helped me recover, but also led to the discovery of my brain tumor. I was running the 2014 Marine Corps Marathon and at Mile 9, my leg buckled. Long story short, I finished the run (that never quit attitude) and returned home, immediately to the emergency room. Walked out on crutches, with the opinion I had injured my IT Band; more physical therapy followed.
About four months later, I had an unusual intermittent rhythm/spasm in my lower left leg – nothing visible on the outside, just internal. I had a relay marathon the next day. I texted my teammates and informed them. More concerned for my health, they left the decision up to me. I ran with the team. (As a sidenote, we came in first for our category).
From there the spasms began to happen more often, no particular trigger, no particular time. I spoke with doctors and they chalked it up to a running injury. I went back several times, but my persistence was not paying off. Three days before my brain tumor was discovered, I went to the ER. By this time, my legs were weak. I felt as if I could not support my own weight. I was told I had tendinitis in both ankles and given pain medicine.
It was a Sunday night; I had just gone to bed. Sleep was hard to come by at this point. I woke up with leg spasms. This was not the first time while sleeping but this time was different. I vividly remember the “spasm” slowly crawling from my lower leg up to my head so I went back to the ER. They thought I had a stroke and ordered a CT scan. As they were preparing me, the doctor stepped in. Low and behold, it was the doctor, who had diagnosed me with tendinitis in both ankles. After I reminded him, I had just seen him a few days earlier, his first statement to me was “What brings you back?”
He would later deliver the news, with my husband and my then five-year- old by my side, that I had a mass on my brain. Words I was never prepared to hear. I cried for a minute and my husband looked at me and said, “We believe in God!” In that instance everything changed. I went from why me to why not me. This was a chance to prove my faith. I cannot tell you all days were great in the immediate aftermath but what I can tell you is I walked by my faith.
The doctor would later come to me and discuss how they were not trained to recognize the possible worse outcomes. However, now that he knew what it was, I was a textbook case!
Wendy: Such an incredible story, Sam. I too had leg spasms prior to the discovery of my brain tumor. I was so engrossed in my work at the time that I just brushed them off. Who would have known that leg spasms could be a sign of a brain tumor? Anyhow, Can you please share what treatments you have had?
Sam: I had a craniotomy at Preston Robert Tisch Brain Tumor Center at Duke University followed a year later by 30 rounds of proton radiation at Hampton University Proton Therapy Institute.
Wendy: How are you doing now?
Sam: Overall, I am doing well. I still have some medical issues; all of which I consider manageable. For the most part, I have learned to listen to my body. I would like to say I get that right all the time but when I do not, my support system will let me know if they think I am overdoing it. My ongoing leg pains make running difficult, but I am not ready to give up long-distance running. Because of the scar tissue on my brain, I am required to take seizure medications for a lifetime. Migraines come and go. I suffer from insomnia. About a month before diagnosis, I started sleeping sitting in a recliner with a neck pillow because of head and neck pain. I continue to sleep sitting up five years later.
Wendy: Same here! I take seizure medications as well and still get head and neck pain too. On another note, How did you come up with the name, Winks from God!? and what is the meaning behind it?
Sam: The following is from my blog:
‘During a spirit filled conversation with my neighbor shortly after surgery, I was discussing how God had perfectly orchestrated my journey. Her response, “My son calls those Winks from GOD!” Already considering a nonprofit, I knew how right that felt. God had winked at me many times during my journey.’
My faith led me down a path in which I was encircled With INtentional Kindness and Support (WINKS) and my desire with this nonprofit is to help other brain tumor patients down a similar path in their fight.
Wendy: What is the mission and vision of Winks from GOD!?
Sam: Our mission is to enhance the quality of life for brain tumor patients and caregivers With INtentional Kindness and Support – no journey is traveled alone!
Our Vision is – Lifting the Burdens to Focus on the Fight.
Wendy: What does your current programming consist of?
Sam: Our Programs of Empowerment are:
- Encouraging Nods
- Support group meetings in-person and/or online, via Zoom helping patients and caregivers cope with the emotional challenges of brain tumor diagnosis (the schedule can be found on our website – winksfromgod.org)
- Eye Opener
- Brain Tumor Education and Awareness
- Sharing knowledge with patients and caregivers to enable better decisions about care
- Increasing awareness about brain tumors and the devastating impact of this disease, as well as the needs of the brain tumor community
Wendy: What about your future programming?
Sam: In the future we plan to implement:
- Empathy in Action
- Provide income-based grants to assist with incidental costs and support services, such as lodging, transportation to and from appointments, mobility assistance
- Envisioned Healing
- Also, sometime down the road, we hope to be able to contribute research organizations
Wendy: What else do you want people to know?
Sam: Please join us for the Winks Challenge (see flyer and video below):
- People often say I inspire then but that would not be possible without the tremendous support I receive from those around me!
- Helping others gives me purpose.
- Like everyone, I have good days and bad days. I have truly learned to appreciate the good ones.
Wendy: What is the best way to contact you?
Sam: Email: firstname.lastname@example.org or Cell: 757.656.9257