Beth's Journey: "Brain Tumors Suck!"
This story starts 18 months ago when my wife went to the doctor with concern about losing her sense of smell and taste. That was just the beginning.
Ask my wife or anyone else who's ever had to deal with a brain tumor. They suck. No one should ever dispute that. Beth Jones' story starts 18 months ago before she was my wife. April 2017, she went to the doctor with concern about losing her sense of smell and taste. As we were about to discover, that was just the beginning.
(Pictured above: Beth Jones and Rowan O'Connor, age 9 here, 2 days before surgery)
The same day Beth went to see an Ear, Nose and Throat (ENT) specialist he ordered a head CT since he didn't see anything abnormal when he scoped her sinuses. What the test revealed stunned us all and undoubtedly changed the course of our lives. The CT showed a massive tumor in the lining of her brain, right behind her eyes.
That led to an immediate MRI. The image above shows the tumor in the lining of Beth's brain in a place called the olfactory groove. If that sounds familiar, the olfactory nerve is what gives your body the ability to smell. With the alarming size and location of the tumor Allegheny Health Network neurosurgeon Dr. Khalid Aziz determined that it needed to come out right away. The tumor was dangerously close to two arteries in the brain that could have caused a massive stroke at any time.
(Pictured above: t-shirts Patrick had made that we all wore to the hospital for Beth's surgery)
I won't lie, there were some dark days ahead between the diagnosis and the surgery. This was scary, life-threatening, serious stuff... checking life insurance, getting medical power of attorney established, among other things. But we handled it together, we did what we had to do, and got ready for whatever was going to happen next.
(Pictured above: Selfie taken moments before surgery, May 8, 2017)
One week later Dr. Aziz performed a craniotomy, opened Beth's skull and removed the tumor. The surgery was a success. Dr. Aziz believed that he had removed all of the tumor and there was good news on the pathology report as well. Beth spent one night in the ICU at Allegheny General Hospital, one night in a regular hospital bed, and then she got to come home.
(Pictured above: Beth at home 2 days after surgery, recovery begins)
After several weeks of cleaning staples and months of hair regrowth (they only shaved about an inch wide spot from her right ear to the top-middle of her skull), Beth was slowly getting back to normal. That tiny possibility of a re-occurrence wasn't stopping her recovery and it wasn't stopping us from celebrating and moving forward.
(Pictured above: The t-shirt Patrick had made to commemorate one year of being tumor free)
We've been through a lot together... brain tumor, broken leg (yep, the year before she broke her leg falling down a flight of stairs). On March 18, 2017 I asked her to marry me and for some reason she said "Yes!". Fast forward to March 10, 2018 and it was even more magical than I even anticipated.
So here we are, 18 months later. Ever since Beth's surgery she's been getting regular MRI scans every six months to look for any changes. 3 weeks ago we got the news we hoped to avoid. A possible re-growth showed up in the same place. This time it wasn't a large mass, only 7mm around, but still not what either of us ever wanted to hear. Since Beth's doctor is out for his own personal medical leave, we decided to move her care to UPMC.
Her new neurosurgeon, Dr. Nduka Amankulor, managed to see her and review her case the day before his wife gave birth to their third child. After consulting with him and radiation oncologist Dr. Steven Burton, they determined the best course of action would be targeted radiation on Beth's blip of a possible tumor. They quickly took Beth to get her mask fitting for the treatment, very much like the one pictured below.
(Pictured above: Sparkt's Marty Griffin getting radiation treatment for his HPV-related cancer)
2 weeks later, it's time. Beth is receiving the same type of targeted radiation. On Monday, February 11, 2019 we went in to the UPMC Hillman Cancer Center for the first and hopefully last treatment. Doctors believe the single session is all that's necessary to stop and kill her tumor before it can grow any further.
(Pictured above: Checking in at UPMC Hillman Cancer Center for radiosurgery)
So here we are, it's a scary day. Nerves and tensions are running high for the second time around involving a brain tumor. Beth is nervous but taking some medication to take the edge off before she goes in for the procedure. Before we all knew it, it was done. The radiosurgery only took about 30 minutes to complete.
Afterwards came the discussion about possible side-effects to be aware of. As daunting as it sounds, it's not entirely as frightening as the craniotomy last year. This time there are no staples, no open wounds, and no dressings to change. This go-round the side effects are much less including some temporary rash or swelling, headaches, vision blurring, and maybe some hair thinning but that part isn't too likely.
Beth was even ready to get some morning coffee and breakfast after we left the hospital. She asked me to share her story with the hope that it will help others get through similar circumstances and take away some of the frightening aspects of the unknown other patients face with treatment and diagnosis.
Here's the candid conversation we had during breakfast after:
So what's next for Beth? For now, we wait and pray and be thankful. She will be back in an MRI machine in 4 months for another scan. If all goes well, the next one will be 6 months out and so on for many years to come.
Special thanks to our friends at both AGH and UPMC who have been with us throughout Beth's treatment plan from day one and into the future. We appreciate all of your honesty, directness, and compassion.
I'm especially thankful for my beautiful wife and the courage she has shown every step of the way. When it looked like the worst could happen, she fought her way through and pulled that chin up, taking on this challenge literally head first and without hesitation. I try to be her rock day in and day out, but she is truly mine in this amazing journey called life.