Tami was diagnosed with a brain tumor in October and died 30 days later. But that’s not where her story begins…
Three years ago Tami started to have mini “panic attacks“. She shared this with me and thought it was due to stress. I encouraged her to see a therapist and talk with her doctor. She did and was prescribed anxiety medication. As the months went by the attacks never went away. She met with a different therapist and was put on medication for depression and was then referred to a psychiatrist. Then another followed by more medication.
Two years later the attacks got progressively worse. When I asked her what the attacks were like she said she could feel when they were about to happen as her heart would begin to race and she felt like she couldn’t catch her breath. Then she would have a mini blackout for just a few seconds. She went to get blood work to check her hormones levels and thyroid, but those test all came back in normal range.
Nearly three years into this nightmare the attacks got even worse. I was on the phone with her one day and she got really quiet in mid-sentence. I kept saying her name and as she spoke it was slurred and mumbled. Then she would hang up and I’d have to call back two and three times just to check on her. When she would finally answer she would be a bit embarrassed and tell me she just had a “panic attack”. These attacks were really scaring her and that fear took Tami down a dark road.
Tami was always fully prepared with information and questions when seeing her doctors. After seeing many different therapists, psychiatrists, primary care givers and multiple rounds of anti-anxiety medication, anti-depressants, and cognitive therapy, Tami began drinking…heavily. It was very odd because Tami never had an issue with abusing alcohol. I started to get really concerned as the drinking started to affect her relationships; including ours. When I would talk to her about it she said that as long as she “numbed her brain” the attacks would be reduced and, if she got drunk enough, she just wouldn’t feel them.
The drinking really started to scare me and her and many family and friends. It just didn’t make sense. Finally, at the request of her family, Tami checked herself into an addiction clinic. It seemed odd to even think that now Tami had a drinking problem when she never did before. Tami was in an in-patient program for 7 days and was released for 3 weeks of out-patient therapy. The reason why only 7 days in-patient was because she really didn’t have any “detox” issues or real drinking history to speak of. She was taken off all medications and on just 1 day she had 15 “panic attacks” at the facility. Some of these attacks occurred in front of healthcare providers, counselors and physicians. These attacks included visible signs of mumbling words, drooling, foaming at the mouth, loss of balance and black-outs. It’s important to note that these occurred without any alcohol or medication in her system.
Five days after getting out of the addiction facility, Tami began to drink again. The “panic attacks” were just too scary and unbearable for her. It was heartbreaking to watch. Family tensions grew and Tami began to lose friends. She felt isolated. She was scared. She thought she was going crazy. On one very difficult and sad day she looked straight into my eyes and said, “I just don’t know how I got here.” My heart broke. Not only from her words but the look of shear defeat in her eyes. She was utterly exhausted and defeated.
It wasn’t until one day Tami (who was a pharmaceutical sales rep) called on one of her dermatology healthcare providers, Diane Hanna-ARNP-C, who was really concerned for her and started asking very direct and probing questions about Tami’s “panic attacks.” It was the time, patience, and curiosity in Diane’s questions to Tami that within minutes helped Diane determine that Tami’s “panic attacks” were not attacks at all; they actually were seizures. Diane immediately called and got Tami an appointment with a neurologist.
The neurologist put Tami on anti-seizure medication and ordered an MRI of her brain. Once on the medication, the seizures stopped. So did the drinking. So did the fear. The MRI showed a 4cm tumor on the left frontal lobe just above the left eye. The tumor was so large and had been there for so long that it had already damaged a large portion of her brain. Tami was matched with an excellent neurosurgeon and her surgery was scheduled in days and (at first) appeared to have been somewhat successful. Amazingly, within 48 hours after brain surgery Tami was checked out of the hospital, walking, talking and smiling like nothing even happened.
During the next 7 days Tami had a new lease on life. She finally had answers and she finally knew what it was she was battling. The doctors thought that maybe the tumor was a low grade cancer or even maybe benign but needed pathology and genetic testing from what they removed during surgery to know for sure.
Finally, Tami had answers. She wasn’t going crazy at all! Her brain was malfunctioning and short-circuiting due to a large tumor. For three years, all these healthcare professionals was treating her symptoms and not the cause of the symptoms…not once did anyone suggest taking a look at the organ in question…her brain. Regardless, Tami was HAPPY. She was going back to PTA meetings and her kids’ football games. She reconnected with her friends and family. She mended fences with others and herself. She had her strength back. Tami was back.
Then on a day when she was only schedule to have her stitches removed, the Neurologist came in and said he needed to speak with her. The pathology report had come back… It was a glioblastoma; the deadliest of brain tumors. And after surgery the tumor had mutated rapidly, grew significantly in size and 48 hours after hearing the news, Tami suffered a massive seizure and lost all brain activity. Hospital machines kept her body alive but her brain was dead; my amazing, wonderful, beautiful sister was gone.
So now Tami’s family and friends are all wondering how this could happen? How did we all miss the signs? How would early detection have changed Tami’s outcome? It was also one of Tami’s thoughts when she was diagnosed. She would ask, “Why didn’t anyone take me seriously about my panic attacks?” “Why did everyone just throw anti-depression medication at me?” “Why wasn’t this caught sooner and what would have happened if it was?”
So in Tami’s memory, the Tami Wilson Project was created. The mission of the Tami Wilson Project is to promote awareness and advocacy for early detection of brain tumors. This can be done by changing treatment protocols in therapy and psychiatry and promoting more brain scans. We want to help everyone from family members to healthcare providers to recognize the warning signs of brain tumors through web resources and advocacy at healthcare industry meetings.
I hope you will help join this fight and donate to Tami’s cause. If Tami’s story can save at least 1 life, then Tami’s death will not be in vain. And talk about savings lives…. upon her death, Tami has saved the life of a 23 year old by donating her lungs. Tami saved the life of a 28 year old by donating her liver. Tami saved the life of a 40 year old by donating a kidney and saved the life of a 59 year old by donating her other kidney. Even in death, Tami still managed to help others. I hope you will donate in Tami’s honor to the Tami Wilson Project as Tami still has more lives to save. #Tamistrong.
