JulesJourneyAndRecovery

I. Have. Brain. Cancer.

I'm still adjusting to reading this. much less saying it out loud. I had a repeat MRI of my brain, palliative care, radiation oncology, and hematology oncology consults this week. It seems as though everyone has been dancing around this notion of "is it or isn't it" in terms of the big "C" word. Cancer.

Yesterday, at my hematology oncology appointment, my worst nightmare came true. I. Have. Brain. Cancer. The verbage quickly changed to "so with this type of cancer, treatment options are..." and then the Charlie Brown teacher, 'womp, womp' kicked in, I heard and processed nothing but fear, tears streamed down my face and I had to pause before getting back to the consult to fully understand the information being given to me. I took notes, not the best as my hands were trembling; but, I have brain cancer.

After deciding collectively as a team on how to treat my residual brain tumor, I had to rush to pick up Dominic from school. I fought back tears and had to be a strong present mommy and that everything is fine, and I cannot tell you how difficult that was- but I had to be, for him. But all of the horrible news and fear melted away when I he sprinted towards me and jumped into my arms for my "monkey hug" yelling "mommy" carrying with him a picture he drew in aftercare of his Halloween ghost named, "ghosty" to put on the fridge at home with the rest of his Halloween art projects. My heart both melted and broke at the same time. I didn't have time to process because we got home and again I had to be present, strong, happy Mommy, not only for me but more so for him. We did a cast/mold project of us holding hands and it turned out beautifully and very appropriately needed for me right now as a reminder that he's holding my hand and he is my strength. That little boy has no idea how much he's saved my life in the past year and a half.. he is my everything.

Back to me having brain cancer. After Dominic was picked up by his dad I did research from reliable resources until 5am and fell asleep in my office chair. For those that don’t know I am a Neuro clinician and spent 12 years working in the hospital in acute care in the ICU, Neuro, and poly trauma units. I have my doctorate, two masters, and five certifications all primarily in Neuro:  including and not limited to-geriatrics, brain injury, and stroke rehab specialty. After having my son Dominic, I shifted into academia and was a collegiate doctoral professor for two years; So the irony of having a brain tumor is real. I want to share some information and reliable education for those that care to read or listen about this process both from a clinician and now from a patient’s perspective. Between my clinical experience, my recent consults & notes, research, and resources; collectively, this is my understanding of my current situation of my having brain cancer.

With brain cancer, it is an abnormal growth and collection of cells, thus forming a tumor. The most common type of brain tumor is a glioma. The severity or scarcity of a glioma is measured in terms of grading: grade I is an astrocytoma, grade II oligodendroglioma, and stage III-IV is a glioblastoma multiforme (GBM); which this type of brain cancer can turn into if left untreated is horrific and essentially fatal. I've had many patients with GBM's that I treated and they ultimately passed away.

 

I had what we thought via imaging at first was a R frontotemporoparietal low grade astrocytoma so I underwent a R craniotomy with resection and biopsy of the tumor on 8/19/25. Now per the results of the pathology and feedback from this past weeks consults with my incredible multidisciplinary team, it is a grade II oligodendroglioma,  with an IDH1 type mutation forming a brain cancerous tumor resected aka removed surgically via craniotomy or opening of my skull to remove the tumor followed by biopsy and sent to pathology thus testing for genetic mutations and revealing it was a low grade glioma, specifically an oligodendroglioma. My neurosurgeon got "most" of it out- why not all? Because it had enhanced deep into my pre-motor and motor cortex and the risk of getting it "all" would have sacrificed the functionality of my left side. So the multidisciplinary team question was, "so what do we do about the residual tumor" described to me as a small half a moon sliver in size.

These were the following treatment options explained to me:

Radiation: 40 minute visits M-F w/ 10 minute setup for 1 minute of radiation to the residual tumor. under a CTB with a huge mask on to keep my head still for 6 weeks. Side effects: nausea, hair loss on the right side of my head, headaches, loss of appetite, long term side effects: cognitive impairments, memory loss, radionecrosis requiring steroids, radiation can cause tumors. This all Sounds pretty awful right?

Chemo: 2 mechanisms of delivery of chemo in tandem with simultaneous radiation: chemo by way of IV which causes hair loss, nausea, vomiting, food aversions, loss of appetite and weight loss vs

 

Target therapy or treatment or otal chemo by way of medicinal intervention. i.e. in my case this newer drug called Voranigo. 30 mg to start titrate up to 40mg, taken orally once a day, for up to 2 years, labs and blood work every 2 weeks, repeat MRI of the brain every~3 months, it primarily effects the liver of course?! So focus would be on interpreting how the at first 30mg impact my liver enzymes, AST, ALT, and alkaline phosphatase. Side effects include: nausea, vomiting, diarrhea, fetal anomalies. headaches, seizures, muscle aches or stiffness, increased liver enzymes, and significant fatigue. If you recall in neuroanatomy, oligodendrocytes provide energy for the body so energy levels and fatigue are significant with my type of brain cancer. Additionally, cognitive and emotional changes are common.

The ultimate decision from a multidisciplinary care team approach, myself included as a patient, decided on the Voranigo as my hematology oncologist emphasized focusing on what we know now.

This chemo drug, Voranigo, specifically targets brain cancer tumors like mine- oligodendrogliomas IDH1 mutation. The only problem, Voranigo is a newer drug so it's more experimental and only 1 research study has been conducted called the Indigo study which had great outcomes; but only monitored patients for 2 years. Benefits: Voranigo delayed progression, in rare occasions shrunk the tumor, and prolonged quality of life and enhanced longevity, morbidity, and mortality rates. The harsh reality, as described by my hematology oncologist, is that this drug is basically a time capsule, delaying further tumor progression, but ultimately the residual brain tumor could enhance, come back and grow larger and require ultimately another craniotomy and/or chemo/radiation in the future- but it's hard to say because we don't know what mine will do in the future. All we know and can focus on is the now.

What it boiled down to is this: the crapshoot gamble of trying this new oral chemo medication to buy me time outweighed the unnecessary negative side effects of putting me through chemo and radiation; so that's why we went with this oral medicinal chemo, Voranigo. 

So here I am. Now a young adult with brain cancer because of a brain tumor called a stage II low grade glioma- an oligodendroglioma with IDH1 mutation and will be starting oral medicinal chemo in about 2 weeks whenever the specialty pharmacy contacts me and ships the medication in a monthly dose.

For now and while taking Voranigo per my hematology oncologist I will also be on Compazine for nausea since Zofran doesn't work for me, and per palliative care for headaches Tylenol around the clock and Oxycodone as needed for severe breakthrough headaches. Per neurosurgery continued Keppra for seizure prevention. 

I was introduced to oncological social workers and nurses that have provided education and been extremely empathetic, supportive, kind, genuine, compassionate, and informative. There are many brain cancer resources online and support groups, thankfully, so I am reaching out to them individually for support and assistance by any means possible.

In terms of our home, unfortunately I think that ship has sailed, I do not have enough money to get caught up on the mortgage payments, so my ex husband had a realtor come to the house this week, amongst all these doctor appointments, to do a walkthrough, the realtor discussed listing the house in November, and potentially closing in January to buy me some time. He was very kind in that aspect. Even though listing, selling and leaving our home still devastated Dominic and I especially amidst all of this news; it’s happening whether I like it or not. The only good news(trying to find the silver lining in things and not stay completely hopeless): Dominic and I will have one last Halloween, Thanksgiving, Christmas, and New Years here in our home. I will have to do research on finding us a new place to live for us as a single mom staying locally in Bethlehem so it's close in proximity for both our needs. I'm trying to see the positives for his sake and perceive it as a "fresh start" to 2026. Because the absolute HELL I've been through the last year and a half I will happily leave behindme. So for now...I am going to get used to saying,

"I. Have. Brain. Cancer".

I’m finding it hard to even utter the words I have brain cancer without crying myself, and I don’t know how to explain that in a way that makes sense to a five-year-old that “mommy has a sickness in her brain and she has to take medicine to make it better and that sometimes she’ll have headaches and be really tired and might need a nap but she’s OK”. Dominic is extremely protective of me and when I get emotional and cry, so does he, I love that little boy with all of me in every part of me he’s my strength my everything. All the while, throughout all these consults, sure did I worry about myself, yes- but my biggest concern was my Dominic because I don’t know the answers, I don’t know what the future holds for me, I don’t know what the future looks like for us, where we’re going to live, am I going to be OK? I don’t know. When Dominic was two I taught him positive affirmations in the mirror and every morning we would say together, “I am strong, I am smart, I am loved, I can do anything “. I have a voice recording of him when he was three repeating what I always said to him in a moment where I was emotional, and he said to me and I’ll never forget it and I listen to it often still in moments when I feel less than- he said “you can do it mommy try your best I believe in you, you got this” his affection, intuition empathy and compassion for others with such a big caring and kind heart is 1000% from me and he makes me so proud every day of the loving inspirational little boy that he is. 

In terms of us, WE need YOUR help now more than ever with utilities, daily expenditures, bills, debts, legal fees, housing repairs to prep for sale, home upkeep, needs for Dominic, I, and Jax, and now movers, storage unit, moving needs and expenses, new home setup and needs, etc. 

Any and all donations, every penny counts, are greatly appreciated from the bottom of our hearts, so PLEASE, do us a favor and share this link, keep us in your prayers, or donate if you're able to: God bless!

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