Life has taken an unexpected turn for Jules, a compassionate Neuro clinician who now faces overwhelming challenges. Recently diagnosed with a stage II R frontotemporoparietal astrocytoma low-grade glioma, I underwent a R craniotomy that, thankfully, went well. However, there is still a residual tumor that requires further treatment, including possible chemotherapy and radiation. This medical journey has not only been physically demanding but has also led to unexpected seizures and complications, amplifying the stress of the situation.
Recently, in October, I had a busy week of consults starting with a repeat MRIB Monday, palliative care and social worker Tuesday, and radiation oncology as well as hematology oncology Thursday back to back. Throughout the course of the week I noticed the verbage began to shift. Everyone was deferring me to hematology oncology for "treatment recommendations". The conversations went from well if then maybe this quickly to "so with this type of brain cancer (ie the residual tumor) this is the treatment we recommend". Things got real. Turns out my pathology was positive for malignancy, I now went from a stage II astrocytoma low grade glioma to a stage II oligodendroglioma IDH1 mutation type, I cried. I had brain cancer. I tried putting it into words a 5 year old could understand when telling Dominic the news, I cried again and he cried with me. I swear the emotional maturity of that little boy, his empathy, compassion, huge heart, and intuition astounds me he's incredible and my rock. I received a phone call from Onco360 about my oral chemo being mailed from my specialty pharmacy for a month supply of daily dosages with an oncology 'welcome package.' I cried again. As you can see above, my medicine cabinet and pill box look like that of a 90 year old, not of a 38 year old but I guess this is what brain cancer looks like.
I started oral chemo, Voranigo about 2 weeks ago. The side effects are real. The fatigue is insurmountable. I feel narcoleptic by 4pm it's unbelievable. This past Monday night I fell asleep at 5pm and missed my home group AA meeting and slept until 3am and then slept more the next day. Then came the exacerbation of headaches worse I find at the end of the day. A few nights ago, I felt unsteadiness and balance difficulties with dizziness, then another night a wave of nausea and decreased appetite. I had a follow up with my primary care, my OBGYN for a colposcopy as my pap smear was abnormal + for HPV non STI type, cervical dysplasia, 3 punch biopsies were done. The last 2 weeks I joined some support groups on Facebook for brain tumor survivors, brain cancer, American cancer society, and oligodendroglioma awareness. Let me tell you what, these are worse than Dr. Google himself. It instilled the fear of God in me; not very 'supportive' if you ask me but I guess take it with a grain of salt. Basically horror story after sad story of death and dying to which I brought up to my palliative care doctor yesterday and asked her to be very honest with me is there truth in their reports is this really what my future looks like? amongst tears-yet again. She said in a matter of words, yes. Some of the survivors reported "on craniotomy #6,7,8, etc. 10th round of chemo/radiation", etc. I was horrified. But appreciated my doctors transparency to mentally and emotionally prepare myself for what appears like the inevitable, a seemingly terminal brain cancer diagnosis essentially put on "pause" with an experimental drug that's minimally been studied to promise "quality of life" for two years before all hell breaks loose again i.e. regrowth, enhancement, warranting the dreaded reported repeat craniotomies and rounds of chemo/radiation. My future looked grim. I cried when I got home. I had Dominic before I went to an AA meeting, thank God for that little boy. I noticed I had a missed call and a voicemail. It was from my OBGYN, she said she got the results back of my colposcopy, it was + for cervical dysplasia CNIII meaning severe cervical dysplasia or cancerous in situ aka abnormal cancerous cells of more than 2/3of the cervical lining.....Great.... and that I'll need to schedule the OR for a Loop electrosurgical excision procedure (LEEP): A common procedure where an electric current passed through a thin wire loop is used to remove abnormal tissue.....Lovely.
To know the back story of my mental health journey, see the story I posted on this spotfund account titled "JulesJourneyMentalHealth" to increase mental health awareness.
I also noticed myself make a comment "if it weren't for Dominic I'd be six feet under" I said it in jest but it prompted me to do a mental health and spiritual fitness check in. My AA meetings the last 2 nights were about of course spirituality.
I noted I've been feeling exceptionally "low" lately since being diagnosed with brain cancer, starting chemo, plus the divorce, custody, lack of work/finances, bills piling up, physical ailments and side effects, losing my home, possibly now cervical cancer, with a very sad looking future, insert major depression. Needless to say, Ineeded to restore my light again beyond the emotional support Dominic offers me, that's alot to put on a 5 year old so it was time to advocate for myself and be honest with both myself and my medical team/resources. I conveyed my depression with palliative care yesterday, my PCP via mychart, my psychotherapist today, and will discuss with my psychiatrist tomorrow morning at my appt. Regardless, I did call and scheduled an intake appointment at St. Luke's Penn Foundation, Innovations, starting with a case manager then psychiatry, this coming Monday then mental health PHP for 2 weeks Mon-Fri 830am-230pm as strongly recommended by my psychotherapist; of which I am in agreement of I am understandably depressed with everything going on and need more support, prior returning to my 1x/wk MH psychotherapy sessions and follow ups with psychiatry.
Amidst this health struggle, Jules is battling another unexpected challenge—a risky divorce and child custody battle that threatens to uproot her home. Jules and her five-year-old son, Dominic, are at risk of losing their beloved home, a sanctuary that has provided warmth and stability for many years. With mounting medical bills and the inability to work, financial hardship looms large.Your support can make a world of difference.
By donating, you can help Jules focus on healing and ensure that Dominic grows up in the only home he has ever known. Your generosity will help cover essential living expenses and provide peace of mind during this tumultuous time. Every donation, no matter how small, brings hope and security to Jules and Dominic. Please consider making a contribution, sharing their story, or offering a prayer. Together, we can lend a helping hand to a family in need and ensure their home remains the comforting refuge it has always been.Thank you for your kindness and support during this critical time. Your compassion can help turn their tide of struggle into a beacon of hope.🧠❤️🩹🥺🏡💔🙏✝️
