'Dead Girl' fights cancer and more, lives to share her story

Yahoo

a day ago

May 30—Palliative nurse's notes, Aug. 2, 2019: "Participated in Hospice meeting with patient. Seth (spouse), mother, father, bedside RN. Andrea from Hospice was on speakerphone. Discussed philosophy of Hospice and services they provide. Advised that by accepting Hospice, patients have a terminal diagnosis with less then six months to live. Patient was surprised by this, stating she would not qualify. Gina had several questions regarding cancer diagnosis, stating, 'I don't think I am terminal' and unaware of staging/diagnosis .... Patient continues to repeat she is only 46 years old and would like to continue with a treatment as offered and hopefully start immunotherapy when able. Seth was in agreement and supportive." — Book excerpt
WATERTOWN — Eugenia Mancini Horan opens the front door of her parent's home on outer Bradley Street to welcome a visitor, this writer, who tells her that from what he's read about her, she looks amazing.
"Your reaction is much like when I go to a new doctor and they open the door and are like, 'I was expecting someone deader,'" she says, laughing.
Eugenia ("Gina") has crawled, bled, begged, argued, rejoiced and has been mocked through the ravages of stage 4 cancer.
It is simply amazing, a miracle some say, that she is alive and cancer free.
She recounts her 2019 cancer journey in the self-published, "The Dead Girl's Guide to Terminal Cancer: A True Tale of Anxiety, Horror & Hope." It's been the number one best seller on Amazon's lung cancer category for several weeks.
It's a hardbound 400 pages, the size of a college textbook and its emotional weight vastly outweighs its 2 pounds. Its cover features a deer-in-the headlights-like self-portrait of the author, who has won a slew of awards on the local arts scene for her oil paintings. Readers have called the book darkly humorous and poignant. With its various characters, tragic subplots of her youth, family dynamic and medical notes, its is also novelesque. For the gist of it, Gina summarizes it all in the book's afterward:
"There are no heroes in this story, no saviors, no 'Good Doc With a Cure,' coming in for a last-minute save. There is only medical bias, cancer bias, and the notion that a girl who is afraid of the world can't fight like a rabid animal to stay alive."
'Let me live'
"My whole story is fighting people to get them to let me live," Gina said in the room of her parents' home, where in 2019, a hospital bed was set up in front of a picture window and where many expected her to meet her demise while battling lung cancer which she said had spread to her trachea, bronchus and small bowel. "Somebody should be treated like they're dead when they are already dead."
"It's such a scary diagnosis and we have put such faith in the white lab coat," said Seth, who helped his wife with the book. "I know because we did it. You will cling to anything you are told. That has been the most horrifying, duh! moment during this whole process: to have the curtain pulled back and it's like, these are just people. And people make mistakes. And every one of them made a mistake with her."
"When putting out the book, you couldn't think about someone reading it because it's like, 'Here is every bad thing that ever happened to me and people treating me badly.' Would you like to read it? It's embarrassing," Gina said. "But I thought in it, there's got to be something that can help people: look for these red flags, don't just trust. I've been a cancer advocate for five years and now I have two enemies."
One of those enemies, she said, is God. "Which sounds harsh, but people pray to God that he's going to cure cancer, so they become inactive."
The second: "People implicitly trusting that their doctors have their best health in mind when they come up with cures. No doctor comes up with a cure. It's a list. It's, 'If you have this cancer, in this stage, this is what you get.'"
Gina's "Dead Girl's Guide to Terminal Cancer" encapsulates one year, 2019, from when she was diagnosed to when she saved herself, thanks to her desperate pleas to try immunotherapy — specifically Keytruda — a type of immunotherapy that works by blocking a pathway to help prevent cancer cells from hiding. Immunotherapy uses a person's own immune system to fight cancer.
Blood and a diagnosis
Gina woke up on Christmas morning, 2018, at their home in North Syracuse and thought she had the flu or something. When she coughed, she noticed little flecks of blood on a tissue. As a smoker, she thought it could be normal. "But one night, it was abnormal," she said. "It was nose-bleed-like." She also experienced shortness of breath and a racing heartbeat.
Gina said she has had symptoms of anxiety disorder since age 5 and was finally diagnosed with it at age 17. Considered disabled, she has Medicaid. At the medical appointment to address what she was coughing up, she said she was told, 'I think you just got yourself worked up with your anxiety.'"
"And I'm like, 'That's powerful. I was torn because I wanted her to say it was nothing, and then when she said it was nothing, it was, 'I can't let it go. Can we run some blood work?' By the time we got home, the phone was ringing. I failed that blood work bad."
What followed was a series of tests and scans that wreaked havoc on Gina's anxiety. She was diagnosed with non-small cell lung cancer in mid-February, 2019 at a Syracuse hospital, one of two hospitals in that city which treated her during her year-long ordeal. She doesn't name the hospitals in the book and requested the Syracuse hospitals not be named here.
Radiology summary/Feb. 15, 2019:
Impression: Right apical lobulated mass is seen. Right hilar lymph nodes are seen possibly exerting a mass effect on the right main bronchus. No pulmonary arterial embolus is identified."
In the top portion of her uppermost lobe, there was an unusual mass. Also, some lymph nodes had grown large enough to restrict airflow through her right main bronchus.
Surgery, which didn't make sense to Gina, was recommended. "How was taking out two lobes of my lungs — to remove the origin tumor that wasn't causing any issue — going to help with the mass that was actually threatening my life? Was this just busy work?" she writes in the book.
A cancer diagnosis can bring thoughts of chemotherapy. That wasn't originally in the cards for Gina, a "card-carrying emetrophopbic." Emetophobia is the fear of vomiting and can be triggered just by seeing someone else being sick.
As an alternative, Gina and Seth tried highly concentrated cannabis oil. Meanwhile, Gina's parents, Eugene and Clorise Mancini, urged her to come home to Watertown as her health declined. Gina and Seth moved there in May, 2019.
"The drive there filled me with both anxiety and salvation," Gina wrote in the book. "Seth figured out how to get the oxygen compressor to work in the car." Gina could not walk to the front door, and it marked the first of hundreds of times that Seth would carry his wife.
This year, on the sixth-year anniversary of her diagnosis, Gina, on Facebook, paid tribute to Seth, who she married in 2006: "My husband dropped everything when I got sick to be my caregiver. For five months everywhere I needed to go, he carried me because I couldn't walk. Bedpans? Did that. Suctioning out my trach? That too. Butt wiping? Yup, even that. Yet, most days, we still laughed because we were still us."
Gina entered Walker Center for Cancer Care at Samaritan Medical Center, Watertown, for the first time on June 5, 2019, where she would stay as an inpatient for a week. She agreed to start chemotherapy on June 7, which continued weekly for five infusions before she had a hyperbaric breathing emergency and was taken by ambulance to an intensive care unit at a Syracuse hospital.
She was at that ICU from July 17 to Aug. 9.
"The chemo has failed me. I'm in a very bad place medically,"she wrote in a July 18, 2019 Facebook post. She was given a zero percent chance of survival.
Hematology & Oncology Fellow notes
July 31, 2019
"Patient has received palliative radiation therapy. 3 daily fractions in addition to one endobronchial brachytherapy ... Keytruda will not be given to an inpatient and patient needs to be more medically stable to be eligible for and tolerate further therapy."
In the ICU, Gina was starving and her weight plummeted. A couple of photographs of a gaunt-looking Gina are on the book's back cover.
"The reason I put those pictures there is because I was not sick because of cancer, but because of not being treated. It was, 'We are not going to feed the patient because the patient is dying. The patient is dying because she isn't being fed.' One of the reasons I wrote the book is because nobody around me understood the extent of the abuse that was happening, I know without a doubt, had I been able to talk, the entire story would have been different, because I would not have been docile about this happening."
Excerpt from Psychological evaluation
Aug. 1, 2019
"Patient clearly and persistently repeated ... that she wanted palliative care only rather than aggressive Rx intended to extend life because aggressive Rx was unlikely to work, and hospitalization was so unpleasant."
"In retrospect, I had made an almost fatal error," Gina wrote. "I hadn't been willing to lie about my belief in my own death in order to get out." In other words, she said she had to be purposely deceptive to get into Hospice.
On Aug. 9, 2019, Gina left the hospital for Hospice care at her North Syracuse home. It was a Friday. "The Hospice coordinator told us that someone would be back in 72 hours," Gina wrote. "She also told Seth I had about three days to live. What excruciating math."
Gina received Hospice care for six days, after which she and Seth cut ties with it. Her goal was to return to the home she grew up in, in Watertown. She arrived Aug. 15. Seth carried her into the house. "I knew I was in very bad shape," Gina wrote. "But there was no time for pessimism, and the hard work ahead didn't scare me."
At SMC, two weeks after her "two weeks to live," she pleaded to a doctor for a Keytruda prescription. But the doctor would not budge in her refusal. "My temper now getting the best of me, I snarled: 'So, what you're telling me is that you are afraid the Keytruda might kill me before the cancer you know will kill me? Is that the argument? Am I clear on that?' But please, please, just give me a f****** chance to fail. Please don't make the choice for me."
The doctor relented.
On Aug. 29, 2019, Gina received her first Keytruda infusion. It would be a 30-minute process every three weeks. Two days later, she wrote that her fever subsided. Her lung opened up 15 days later, creating movement in her body, near her rib cage, that was frightening at first.
By the second infusion, she was sitting up on her own. She would continue to get stronger, building back every muscle in her body.
By late September, Gina was using a walker in her parents' driveway. On Halloween, at her fourth Keytruda infusion at the Walker Cancer Center, Gina saw a nurse that she hadn't seen in over a month. Her book recounts the nurse's reaction: "I watched all the color drain from her face, and she dropped to her knees as she grabbed the cross around her neck. She began to sob right there on the floor. I ran over to comfort her, and she still looked at me as if I were a ghost."
Gina believes she could have been given Keytruda on day one, sparing her body the indignity of wasting away. It would have also voided a $2 million ICU stay, she said.
Despite being on Medicaid, Gina said she and Seth acquired about $200,000 in medical debt, noting, "living against medical advice isn't covered by Medicaid."
They deployed their credit cards, sought financial help from her parents and a GoFundMe drive raised $15,000. "Nobody fights, especially not on Medicaid, because they expect you can't."
No cancer, no naïvety
Gina's most recent medical appointment reflected being 5 1/2 years cancer free. She is also free from her naïvety relating to medical care.
"I think when you see a movie about a severe illness, there's a kind, compassionate, dedicated doctor cheering on the patient, staying up nights to figure out a way, a solution, a plan. I kinda expected that. I miss that naive me. And the patient is stoic, brave, suffering beautifully and angelically. Almost from the day of my diagnosis, I thought of that patient, the Hallmark Heroine. The thing about that woman? She always dies at the end, and people sob because it was so unfair."
But that wasn't her fate, or in her nature.
"I'd already had 46 years of being cynical, sarcastic and a bit of a jokester. And cancer didn't change that, because I refused to let it own me. To take over, to take away my ability to make fun of any and everything. They say a positive attitude is super beneficial in cancer, but I hope I have shattered that belief."
Being "afraid of the world" was also a factor in Gina's cancer battle.
"That made it easier to deal with, in a way. It was just another thing to be scared of. I was equally as afraid of going to the hospital, as I was of dying. It absolutely 100 percent saved my life. Without doubt or hesitation. Anxiety teaches you to look for the danger, seek all the exits, and always be prepared to flee. But perhaps above all, avoid situations that feel terrifying. Everything after February 15, 2019 felt out of control, and terrifying. No one in the medical world would have conversations anymore, they only talked at me."
The thing about anxiety with PTSD, Gina explained, is that one can become very calm in chaos. "You think clear, sharp and exact. Stillness and boredom are terrifying, but the world blowing up clears the mind. And I think that's why I was able to spot flaws in my treatment plans and question the motivations for them that were nonsensical to me."
A key pep talk
Despite the medical professionals who "only talked at" Gina and recalled in her book, she also highlighted in her book a few individuals that gave her hope. One was a "Dr. Lee" who was doing a rotation as a hospitalist at SMC, while doing his actual residency at Roswell Park Comprehensive Cancer Center in Buffalo. He now works in Texas.
"Dr. Lee was my magic. It's like he came in at the beginning with the best pre-game pep talk, and I followed it the rest of my journey. He was young and didn't have the ego or entitlement I've seen in so many other oncologists I encountered. He was enthusiastic about killing cancer. Stoked. Raring to go. Running into work to kill some cancer!"
Gina said that he was also the first and last doctor to root for her. "Which likely sounds odd. But the doctors who saw me get better weren't impressed. It wasn't remarkable to them. They just thought I'd die."
The biggest gaping wound Gina said she encountered in oncology was the lack of "heart" she saw in it. "The point is, if there were more Dr. Lee's, I honestly believe more people would survive. Caring spills over into treatment plans, into feeling valued, into a bond of trust, and helps avert not distrusting the doctors, the medicine, the conspiracies."
Last month, Gina sent Dr. Lee a copy of her book with a note inside. "And now I feel a bit lighter. It was, in some way, vital for me to let him know how deeply he mattered, that I didn't die, and the part he played in that. And how many fans he has out there in the world now."
Helping others
As an advocate, Gina said she is contacted nearly every day by people who become familiar with her story. "I'm absolutely thrilled others find something of merit in the book. I didn't want to publish it. It was never my intent. But I felt a deep sense of survivor's guilt, and also I had seen and heard things that might help others avoid some of the unnecessary suffering I endured."
Gina said that doctors still regard her as a Stage 4 cancer patient.
"The reason is, is that somewhere in my body could be invisible, undetectable, latent cancer cells waiting to come back. The problem with that is that everybody has that. You do, he does," she said, pointing to Seth. I probably don't, because that Keytruda is bad ass!"
Her situation is an issue each time she goes to a doctor, "From people being surprised, to the question of whether or not my being screened for other cancers is necessary because, I'm dying."
She then laughed, and with well-earned sarcasm added, "I'm always 'dying.' Like, damn! I can't get a break."