This is not a biographical profile; this is someone’s life.
That “someone” could be anyone, statistically speaking. According to the American Cancer Society, approximately 1.7 million people are diagnosed with cancer each year. It is the second most common cause of death in the United States, only preceded by heart disease.
But in this case, that someone is Alannah Giannino, a lively 20-year-old photographer and student at SUNY New Paltz. Giannino was recently diagnosed with botryoid embryonal rhabdomyosarcoma, or RMS. RMS is most commonly found in the soft tissues of female children, usually under the age of eight. There is no known cause and it’s considered a rare form of cancer.
Giannino’s way of life prior to being diagnosed, was pretty normal. She partied occasionally, but nothing too crazy. As a dedicated student, Giannino enjoys school, the knowledge it gave her and the opportunities it presented. Abiding by a vegetarian lifestyle, she was conscious of her food choices, always favoring the more nutritious options. So receiving this poor health diagnosis, after doing everything right, just made it all the harder.
“I found the tumor two days after the spring semester ended in May. Freaked out, told my parents, who were equally concerned for once,” she said. “You can’t shrug off a tumor as ‘growing pains!’”
She spent the day crying and “falling into the black-hole that is WebMD,” she said.
She then made an appointment with Dr. Mark Driver, an ear, nose and throat specialist (ENT) at 7:30 a.m. the next day.
Giannino recalls having a scope slid through her nose and down her throat. Then her doctor, Dr. Driver, called in two of his colleagues to look at the tumor. She says she left feeling more nervous than before, except now she had a steroid prescription and a numb throat.
After the initial biopsies, Giannino went back to her ENT once a week to track the tumor’s size; they hoped the steroids would shrink the growth, since this usually works for benign masses. But when the steroids showed no effect and the initial biopsies came back inconclusive, Dr. Driver decided it was time to try and remove as much of the tumor as possible.
On June 13 Giannino went into surgery and had the tumor removed. From there, the samples were sent back to the same labs as the initial biopsy along with specialized ones located in California and Boston.
Pathology waits are long and the samples were sent a good distance away. A month went by before she received the results.
Giannino was getting ready to meet up with some friends when the phone rang.
“I’ll never forget how the secretary said ‘Honey, we really need you to come down here today,’ after I tried making an appointment for the following week,” Giannino recalled.
The moment Giannino heard the urgency in the secretary’s voice she knew what the doctor was going to say.
She had already considered the likelihood of the tumor being benign versus malignant when she realized the steroids weren’t working. So she prepared herself to be probed and prodded by every medical professional.
“I’m not sure why, but I decided to wear my favorite dress and do my hair and makeup before I went, sort of some subliminal idea that I was about to go up on a stage and get the opposite of a prestigious award,” Giannino said.
By this point, Giannino had made acquaintances with almost everyone in the doctor’s office. When they all “seemed less than cheerful,” she realized her suspicions had been correct.
“I don’t actually remember talking to my doctor, because the conversation was so short and normal, kind of like being told you have the flu,” she said. “I wasn’t upset, if anything, I was almost proud that I had been correct in my assumptions.”
For every diagnosis, there’s a prognosis, which usually begins with acceptance of the hand you’ve been dealt. Alcoholics in recovery abiding by the 12 Step Program, begin their “new” journey through life by forgiving themselves for the decisions they made that lead them down that dark, dark road. But in Alannah’s case, there is no self-forgiveness to be found, no one to blame, no decisions to be considered as mistakes.
With acceptance comes conversation.
Who do you tell?
What do you tell them?
When do you tell them?
How do you tell them?
But also with conversation come questions. The kinds of questions you thought you would never be asked. The ones that you don’t even have answers to yet.
“I told my close friends and family first-the people I knew I could trust, that I knew loved me and would support me no matter my condition,” Giannino said.
Access to an avid support system is crucial for the survival of any major life event, both good and bad. The Substance Abuse and Mental Health Services Administration defines support systems as “strong social relationships that promote health and wellbeing,” during both the hardships and positive moments in life.
Research by the United States National Library of Medicine and National Institutes of Health shows that devoted support systems can enhance a person’s resilience to stress, help protect against developing trauma-related mental illnesses and disorders, such as posttraumatic stress disorder. Support systems also can help heal, reducing medical morbidity and mortality.
Simply put, support systems can help relieve the stress from any dramatic life change. Family and friends can help a person make decisions. In the situation where ones’ health is in jeopardy, the decisions need to be made in a timely manner. The quicker the “issue” is resolved, the more likely the person is to succeed in recovery.
Along with the encouragement from her family and friends, Giannino finds solace in making art out of her experience with RMS. As a photographer, she has documented as much of the treatment process as possible.
The series started in July, after she had a venous access implant, implantable port, or “port-a-cath,” inserted into her chest.
The port is similar to an intravenous (IV), except it’s implanted under her skin to be removed by a plastic surgeon when treatment is over. Since the needle is inserted directly into the port, there’s a smaller chance of medication leaking outside the IV and into the vein causing muscle and tissue damage. Unlike IVs, ports are able to deliver multiple treatments at once. For example doctors can perform blood tests and administer medication in the same day with one needle stick.
The port stretches and pulls her skin, making it impossible for her to sleep on her stomach, “My port-a-cath is annoying and uncomfortable, but it looks badass,” she said.
On Aug. 21 Giannino received chemotherapy for the first time. The name of her treatment protocol is “ARST0531.” This is what it looks like:
- Twelve weeks of chemotherapy with a weekly infusion of Vincristine.
- Every three weeks the Vincristine is administered with Dactinomycin and Cyclophosphamide.
After twelve weeks, Giannino receives two or three weeks off treatment to have all imaging scans (CT / MRI / PET) redone. “I’m waiting to find out how these scans went at the moment,” she said.
In online cancer forums, there’s a term to describe this long and daunting anticipation, “scanxiety.”
If the results show the cancer hasn’t spread, or even better, come back clear, Giannino will only need four weeks of daily radiation treatments and nine weeks of a different chemotherapy protocol.
In this case, she will only receive the Cyclophosphamide one more time. This is what she is hoping for, since after receiving the Cyclophosphamide, Giannino is admitted into the hospital for a 24-hour hydration and observation period. While admitted, Giannino receives an IV of fluids and an IV of Mesna, both in order to protect her bladder lining from the Cyclophosphamide.
“Around twelve hours after the infusion, the nausea starts,” she said. “It was so bad that I couldn’t even stand up to use the bathroom without being violently ill. My taste buds would be so damaged by the endless barrage of acid that all I could taste was ‘sweet’ for weeks after.”
It took three hospital stays until she realized the nausea was something she needed to let play out. No medication or infusion they administered eased her discomfort or allowed her an appetite, she said.
“The last time I received the infusion, I requested to be discharged as soon as the 24-hour period ended,” she said.
The nurse gave her an injection of Benadryl and she slept on the two-hour drive home. Giannino said she lay in bed for the next three days, miserable and only able to handle the tiniest sips of water and episodes of “X-Files.”
Then on the third day, she ate runny mashed potatoes.
“This is why I have lost nearly ten pounds in two months, despite eating a large, calorie loaded diet when I’m well enough to keep medications down,” she said.
A week after her first infusion, she started to notice some of the side effects.
“After my first treatment, I started to notice swelling and soreness of my tongue, especially the base,” she said.
She also recalled her teeth feeling like they were sharpened on all points and what looked like her taste buds falling off her tongue. “Which was disconcerting to say the least,” she said.
She experienced immense fatigue.She hadn’t lost any hair yet. She was actually hoping she would be one of the few whose hair just thins, rather than completely fall out.
“I wanted to take my hair before the cancer did.”
On Sept. 3, Giannino got together with a few close friends and decided that it was time to shave her head and go “full-on chemo-babe.”
Her friend Oisín Iodice shaved Giannino’s hair off. Then Iodice shaved her own head along with another friend’s hair, “for solidarity,” Giannino said.
Giannino preaches for the acceptance of bald women, no matter what the reason for their bare skulls: medical, hereditary, or shaved by choice. But she said that sometimes she still misses her hair.
Giannino said being diagnosed strengthened some friendships and destroyed others.
She isn’t angry with the friends who distanced themselves, though. “My loving family and friends have filled the void that may have otherwise crushed my spirit,” she said.
Emma Langbert, also a SUNY New Paltz undergrad, had just started to connect with Giannino when she discovered the tumor. After Langbert learned Giannino was facing a possible cancer diagnosis, she comforted Giannino. “I was hoping for the best, telling her that it [the growth] probably wasn’t cancerous, just trying to stay positive,” she said.
Once Giannino started treatment, their friendship seemed to be put on hold.
“It was kind of hard for me to ask her to do something with me, because we had only recently started to get close and I knew she was probably either nauseous or vomiting,” Langbert said. “So I would only interact with her online, I’d ‘like’ her posts and message her, but we never really got to hang out,” Langbert said.
Giannino also said the stress from treatment and all of the life changes also put a strain on her relationship with former boyfriend, Matt Russo. “The different aspects of being sick really ruined my ability to be in a romantic relationship, since I find it hard to relate to my friends now,” she said.
Russo said what was particularly challenging for them was that their relationship was relatively new when Giannino started treatment.“When the doctors gave the diagnosis it really added an extra weight to everything,” he said.
“It sorta made things get way more serious between us, than I believe they would have otherwise been.”
The cancer diagnosis has also forced Giannino to put certain aspects of her life on hold, like her education. She has been on medical leave for the last semester and is eager to return to school.
“I am trying so very hard to make something of my life,” she said.
“I don’t want cancer to define me. I don’t want to be known to others as a cancer survivor for the rest of my life. I want this to be a blip on a long, fulfilling timeline of a life. I will embrace it for the time being and find ways to help others, but I refuse to let this illness to consume me.”
When it came time to pick a Halloween costume, Giannino knew exactly how to creatively embrace her dark wardrobe and recently shaved head, by disguising herself as popular music icon, Pitbull. See photos below.
“So far, having cancer hasn’t sparked any remarkable revelations in me, or inspired me to be any more loving of life than I was already,” Giannino said.
However, it has made her more aware of how close death can feel.
“On the truly bad nights, the ones where I thought I may not wake up, I have been at peace rather than afraid,” she said. “That’s not to say that I willingly accept death or want to die, only that I feel as though I understand the necessity and inescapable truth of it.”
She recalled professing her fear of this illness to the nurses, emphasizing how she was sure she would die in her sleep. “I begged them not to leave me alone,”she said.
“Me, the most fearless person in my family, begging a total stranger for security, then calling my mom two and a half hours away to tell her I was scared and that my skin was burning off. Me, reserved in my love, sobbing and desperately grasping my boyfriends’ sleeve when he had to take the last bus home, even the nurse cried while she gave me ‘something to help me sleep;’ all while I hyperventilate alone in a children’s’ hospital, the oldest patient on the floor by six years.”
Giannino got good news. “My oncologist said that my scans came out fabulous!” Giannino exclaimed.
On Nov. 16, Giannino started radiation treatment. She will continue to receive chemotherapy in the weeks to come, but hopes to return to school for the spring semester. Her goal is to finish treatment and go back to being a full-time student, while working part-time on a farm.
She only has an “outline” for what she wants to accomplish in the future. “As time goes on,” she says, “things change, and I think I’ll change a lot too, nothing is definite.”
As of right now, she would like to join the AmeriCorps after graduation or go to graduate school to study medical anthropology.
“In all, I’m at peace with nearly every aspect of my life and have no fears about my cancer or the people in my life,” she said. “I have everything I need right now. I’m just waiting for the future.”