Just Another Speed Bump
‘Incidental finding, asymptomatic mass, back of the brain, left cerebellum. Benign? 2.8 cm x 1.3 cm. Meningioma. Follow up MRI with contrast. Consult with a neurosurgeon. Surgery or monitoring.’
Mening….Menamena…Meniging….???? Men-ing-GI-O-Ma! Men-ing-GI-O-Ma! Meningioma! I got it! Say it like an Italian. Roll it off the tongue with a little hand gesture for emphasis and a KISS!
September 1, 2020, I agreed to an MRI to investigate those nagging persistent headaches I have had for 15 years. Blame them on PV. The headache specialist my internist referred me to was a really nice guy, but I felt like Dorothy Gale telling the Wizard behind the curtain in the Emerald City I really didn’t think there would be anything in his big bag that will cure my headaches. They did get better with treatment for PV with Pegasys, but yes, they do wake me at night. And yes, Dr. Gaith Abu-Zeinah (my new MPN expert at Weill Cornell that Dr. Richard Silver recommended) has suggested I check it out. And yes, it has been nine years since the last brain MRI to evaluate my headache.
Surgery for a brain tumor during a global pandemic was not part of the plan for 2020.
Hey Lady!!! Hey Lady!!! This is the MPNforum! It’s a magazine about Myeloproliferative Neoplasms, not that Italian brain thingy. Hey Lady!!! Go find a Meningioma Forum to talk about this. Well I did, but you, my dear MPN Friend need to hear this story too.
What makes us think once we get an MPN we will never get something else, equally weird, more common, more deadly, scarier? I worried about breast cancer and wrote about being drafted into the war on breast cancer in 2013. I worry about gaining weight, mousy gray hair, skin cancer, boredom, my blood pressure, cholesterol. But not my PV thanks to Pegasys. I feel better than I have in a decade.
I have a brain tumor, a Posterior Fossa Meningioma on the left cerebellum, the part of the brain that controls breathing, coordination and balance. It has been growing for 12 years and doubling in size. I have no symptoms. I am having brain surgery not related to the headache and I have no symptoms.
The local neurosurgeon was helpful at explaining the diagnosis. I did some research but needed a neurosurgeon to validate and explain what I found. Meningiomas are very common, 33% of all primary brain tumors are meningiomas. Women develop them more often than men. Adults of all ages have them, but more often seen in adults over 65. Slow growing, 80-90% are benign. A small percentage are aggressive and cancerous.
I used my experience finding expert MPN care from Weill Cornell to find an expert Meningioma neurosurgeon, Dr. Philip Stieg M.D. Ph.D. Chairman and Neurosurgeon-in-Chief at the Weill Cornell Brain and Spine Center. Dr. Stieg heads one of the top neurosurgical centers in the country. Weill Cornell New York Presbyterian is ranked #3 in the United States for neurosurgery outcomes.Meeting Dr. Stieg helped ease my worry; he has a calming manner and the heart of a teacher. Listen to his podcasts and you will understand what I mean
This is the voice I want in my head when he gets inside my head.
When I retired from my career in public education three years ago, I started a vocational rehabilitation counseling practice, a career counseling practice. It is a nice way to feel useful, use my noggin, and work from home. It has become a great little retirement gig now that my PV is under control and I feel better than I have in a decade. I am a Certified Rehabilitation Counselor, someone with graduate school training who helps OTHER PEOPLE with disability and chronic illness plan a new life and career that will not bother their conditions. The irony of my situation is not lost on me.
I had my weird wacky disease, Myeloproliferative Neoplasm, Polycythemia Vera. Why must I have a brain tumor too?
Because….Man plans and God laughs. So why not? It’s just another speed bump.
I worry about living with the residual effects and potential functional limitations from brain surgery. Stroke, heart attack, cognitive impairment, hearing loss, Trigeminal neuralgia, seizures, chemical meningitis, left side weakness, cerebral spinal fluid leaks, losing the life I have created, incoordination, lack of balance, disappointing my husband, upsetting my children and grandchildren, the brain surgery, the pre op angiogram/embolism, intensive care, radiation to the brain, picking up dog toys, returning to my work, advocating for my foster kids, helping my veterans, ‘complications’, annual MRIs for the rest of my life, keeping the panic at bay, no bending/twisting/lifting/playing/jumping or competitive dog agility for six weeks to many, many, months. Death.
I tell myself I am preventing a crisis and doing something while I still have a chance at controlling the outcome by selecting a talented neurosurgeon.
My husband Brian loves me. I know this to be true every single day. He left me a secret love message, known only to us, visible only with our special decoder rings. He will be there to take care of me. Nurse Brian. In sickness and health.
Next month Brian and I will check into the Helmsley Medical Tower on a Sunday. Monday, I will check in to New York Presbyterian Hospital where a pre op angiogram and embolism will be performed to seal off the vessels feeding my vascular tumor and make Tuesday morning’s surgery safer. PV adds a complication to major surgery. Dr. Stieg will remove the tumor, and I will begin another lifelong medical friendship at Weill Cornell. One night in the neuro intensive care, a few days in the hospital with a beautiful view of Manhattan to prove to the WC team I can still pee, poop, eat, and sleep through the night without calling the nurse, then back home to Mystic with Brian, Jag and Trig, Steven, Catherine, Sarah, Chris, Natalie, Eloise, Charlotte, Leo, and Zelda.
And my life.
For those who are new to our MPN world or may be curious, here is my MPN back story
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