A Neuroscientist Lost Her Mind From Cancer. Shes Not Alone.

Barbara Lipska was already a two-time cancer survivor when her hand disappeared in front of her face in 2015.

The neuroscientist and director of the Human Brain Collection Core at the National Institute of Mental Health specializes in studying schizophrenia. When she moved her right hand and it disappeared, she immediately predicted her eventual diagnosis.

I thought right away: brain tumor, she told The Daily Beast. But I quickly expelled it. I didnt have time for brain tumors.

Lipska, whose book The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery was published on April 3, had already faced her own mental health challenges in the wake of battling breast cancer in 2009, then melanoma in 2011. She sought psychotherapy at the recommendation of her daughter.

Shes not alone in needing help as a cancer patient. According to the American Cancer Society, feelings of depression, anxiety, and fear are very common in people with cancer, and up to one in 4 people with cancer have clinical depression.

I didnt have time for brain tumors.
Barbara Lipska, neuroscientist and author

The mental health issues Lipska started experiencing in 2015 were extreme. There was the vision issue, her disappearing hand, and the suddenly unrecognizable faces of colleagues. There was also her memoryforgetting where she lived while out on a run and an impaired awareness of having to urinate, leading her to pee her pants. And there was also her changing personality, breakdowns and overall failure to see that she was experiencing these things. Lipska, whose entire career revolved around these kinds of behaviors caused by mental health disorders, suddenly started experiencing them herself.

Lipskas brain tumors were metastases, secondary malignant growths in the brain that were a result of her melanoma. Her largest tumor was the size of an almond. According to the American Brain Tumor Association, melanoma is a common cancer to metastasize to the brain, along with lung, breast, and colon.

One of Lipskas doctors, Ayal Aizer, M.D., a radiation oncologist at the Dana-Farber Cancer Institute, told The Daily Beast that there are a number of elements to consider when patients are diagnosed with metastases, namely the location of their tumors, which eventually defines how they manifest. Lipskas tumors inhabited her brains frontal cortex, which, she writes in her book, determines who humans are.

Even if theyre small, theres a psychological aspect of having cancer in the brain which is very difficult to digest and ultimately cope with, and in addition to that, some patients who have brain metastases actually have symptoms that can impair what we value most in life like vision, coordination or speech or walking and the ability to think clearly and digest information, he said.

It really can significantly impact the life.

Aizer said that a patients mental healthcare is dictated by what they want or express in their unique needs. Sometimes, patients like to stick to strictly medical facts when dealing with oncologists; other times, they want to have an all-hands-on-deck approach, with psychologists, psychiatrists, even family therapists. The goal is to help patients process their mental and neurological issues, digest it, cope with it.

Sometimes we can bring in speech and language and occupational therapists, and I think just having the opportunity to sit with a mental health professional in the office for an hour where were not talking about chemo or immunotherapy or radiation or surgery and its talking about what life is like, what challenges theyre facing and having someone to sort of listen, serve as a sounding board and come up with strategies to cope is really valuable, Aizer said.

Lipska underwent many different treatments for the metastases, like immunotherapy, radiation, steroids and targeted therapy. And slowly, her clarity came back bit by bit, but she was entirely unaware of how shed behaved, so much so that her family had to fill her in on her behaviors.

Today, Lipska is now in remission. Its been 16 months after the initial findings of her tumors, but shes aware there could be more cancer cells still in her body. Theres also the chance shell develop necrosis, an effect of radiation that destroys healthy brain tissue.

But mostly, Lipska is positive, thankful. Shes happy to have her memory and brain back and to have learned so much from her experience that she can use toward her own work.

Though shes regained her neurological function, she largely associates what she went through with what mentally ill people go through every day.

In the course of losing and regaining my sanity, Ive come to identify with other people who have known mental illnesses firsthand, Lipska said in her book, explaining that the symptoms she exhibited fall in line with diagnoses for dementia, schizophrenia, and bipolar disorder. Despite conducting research on mental illness for over thirty years, I believe it is my own suffering that truly taught me how the brain worksand how profoundly frightening it is when our minds fail.

Lipska said her compassion for those with mental illness is one of the many things this experience left her with.

The brain is an incredibly complex mechanism and we have no idea what happens in people with mental illness, so theres more empathy, it gives rise to more tolerance and more passion toward research in this field and more passion to find a cure, which I spend my life working on.

Read more: https://www.thedailybeast.com/a-neuroscientist-lost-her-mind-from-cancer-shes-not-alone

Why cancer isn’t over after you’re ‘cured’ | Mary Valle

The ongoing horror of cancer survivorship is a big, dirty secret, full of tests and fear, as the stereotypical survivor remains inspirationally uplifting

I recently went in for my annual cancer scans. Seven years into survivorship, I shrugged at the thought of it. No biggie, I thought. Ive got this. Scanxiety is for losers.

I was still cocky at 8am.

I had forgotten that after last years gauntlet of tests, I had ripped my hospital ID card, chain and all, from around my neck and tossed it in a trash can in the parking lot. I forgot until this year, when I couldnt properly check in without it. I had to go get another one.

I felt the need to tell the nice lady who made me a new card, who assured me that people lost them all the time, that I hadnt lost it. I had thrown it away in a cinematic fashion, as if I were yanking off my tie and stomping away from my job. And then a huge explosion went off behind me and I just kept walking.

She laughed, really laughed, and that made me feel better.

In the waiting room, I texted a friend, Anya. We like coming up with dream casts of movies based on books. New movie I typed. She came right back with Excellent Women by Barbara Pym, a devastatingly witty tale of an English spinster and her peculiar love life. Casting began immediately with Rocky Napier, the dashing, flirtatious military man. Tom Hiddleston IS Rocky Napier, Anya said. Check, I said. Its almost eerie.

We settled upon Adam Driver as the odd anthropologist Everard Bone. A few more characters in, and my name was called.

After the first event, a 45-minute blood draw with an IV, I texted Anya again. I cannot wait to get out of here, I said.

Anya was confused. All my advance talk of practically a spa day the robe; the free tea and the movie banter had led her to believe that, seven years on, cancer was in my rearview mirror. I wouldve thought so too.

But it always follows me. I try to fake it out by pretending things are OK. If I pretend, I can sort of believe it too, for a time. So I pulled Anya into fantasyland with me, until I couldnt.

There I sat with a taped-over IV in my arm, which was left in so that the next event, an injection of radioactive isotopes for a bone scan, would be smooth sailing. Because I am allergic to the sort of medical tape usually used to strap this business into place, my little arm-tube gets wrapped up in a comfy sock-like cloud, a perfect cushion to try and get some writing done.

I really need to mention here that I spent a good two years in these environs. I know full well there are only a few things that can be done in waiting rooms. Pawing through greasy magazines. Staring into space. Discussing minutiae slowly with your friend or family member. Frantic texting. These fun activities are all served with a complimentary side of cold sweat.

I am eating a gigantic and revolting cinnamon roll from a coffee shop called Grand Grounds, I texted Anya. My arm has a diaper. Im about to carb-cry in public.

I wish I was there with you! she said.

No, Im fine, seriously, I said.

After my trip shortly thereafter through the CT donut, though, my ongoing low-level hum of sheer panic had reached brain-splitting levels. This was beyond even my denial capabilities. I wanted to walk out the door of the hospital and never, ever come back, but I was staring down the barrel of a 50-minute bone scan, starring me, wrapped up human-burrito style. This is actually the worst, I texted Anya.

She was getting ping-ponged by my moods. Why dont you ever talk about it? she asked.

Im really, really tired of the topic of cancer, I said. It seems like everyone has cancer or has had cancer or has dead or dying relatives and friends. I really try not to be a Debbie Downer about it, and I dont want to be a bore. I am not always successful.

Plus, there are survivors who really do walk on sunshine for the rest of their days, run marathons, savor each mornings ever-sweeter dew. I feel that I have somehow failed for not being all inspirational and zesty in perpetuity.

The ongoing horror of survivorship is a big, dirty secret, I said. They make CANCER SUCKS coffee mugs, but Ive never seen a SURVIVORSHIP SUCKS one.

I dont know if I have cancer cells hiding, waiting to mass again. Did that experimental breast cancer vaccine teach my healthy cells to think differently? Are all the fruits and vegetables I scarf daily doing anything? And the miles of walking? All I know is that I am holding steady in a state called No Evidence of Disease.

How about a CONSIDER THE ALTERNATIVE mug? Anya replied.

I need to find a new therapist, I said. Thank you for your support.

The closing ceremony was a visit with my oncologist. After the physical exam, she told me that everything looked great on all my bloodwork, but a tumor marker that had been stable for years had gone up a bit.

Is there a word that means sudden and extreme onset of clamminess? I immediately began to chastise myself for everything Ive done wrong as a survivor, including not eating a raw, sugar-free diet, not doing triathalons, and not being super positive at all times.

Even though I know all of that is no guarantee that my cancer wont come back.

Just a fluctuation, my doctor said. No big deal. The nurse piped up that if someone didnt know any better, and they saw my paperwork, theyd wonder how this perfectly healthy woman got mixed up in this bunch.

No evidence of metastatic disease, my doctor said, with an authoritative nod.

I felt so wobbly after that I had to log some more time on a sad chair instead of literally running to my car and laying rubber in the parking lot. I texted Anya. Things like Gwyneth diet, jogging, dumbass and Im Midge in Vertigo pulling my hair and saying, stupid! stupid! stupid!

But things are OK, Anya said.

Yes, it could be worse. Im not being kept in a box and tortured. I am free. I live a pretty great life, relatively speaking.

Death stalks us all; thats the nature of being a beast. Maybe survivors are just a bit more aware of it. I cope with walks, my go-to for any kind of problem-solving. I cope with rude jokes, if only in my head. I cope by actively redirecting my thoughts, which might be constructive ingenuity or plain denial. Or I dont cope and just feel sorry for myself and also freak out.

Still, its downright liberating to complain about being a survivor. I can complain. I will complain! And then, having done so, I will shrug and say, but seriously, it could be worse.

Read more: http://www.theguardian.com/commentisfree/2016/may/07/cancer-isnt-over-after-cure-remission-survivor-tests-checkups