It’s been awhile.
I started radiation treatments on January 8th.
My current expected end date is February 24th. This date is subject to change as the machine, which I call Agatha, can be a sassy machine and not work some days. If a day gets canceled, we add it on the backend.
To clear up some questions I’ve recieved from a lot of friends and family members lately:
- Yes, my meningioma is still classified by the World Health Organization as a grade two, atypical. However, the University of Pennsylvania is classifying my tumor as malignant. Cancer.
- I am now up to 12 doctors. They all work together wonderfully to make sure I am taken care of.
- I am seeing a geneticist and genetic counselor due to a possibility of having a genetic disorder/predisposition for lesion population as I currently still have two benign tumors in my body.
- The parotid gland tumor is a reactive lymph node per my biopsy last month and is on a wait and see- if it’s still there in June we are looking at another surgery.
- I go to radiation Monday through Friday.
- The next time I see my neurosurgeon for my check up about work/disability is on March 11th – therefore I really do not know what is next until that appointment.
- This type of brain tumor still has a high reoccurrence rate. The reason why I opted for radiation is it takes my chances down to 50% regrowth in 7 years than 100%.
- The chances may change once physicist and mathematicians review my MRIs coming up 4-6 weeks post radiation and again 2 months after that.
- Due to my age, I will probably have this issue a few times throughout my lifetime. I am prepared and hopefully it will never require a craniotomy again, but it could.
Another thing I want to address here is mental health – which is overall a crisis in America but it has picked up a lot of positive reinforcement over the recent years as social media and tough conversations are breaking the stigma.
I used to take one type of anxiety/depression medicine at the start of this headache journey in June. I was on the LOWEST dose at 10mg. Throughout this whirlwind of medical complications my physicians upped my dosage to the highest- 40mg and it still did not work for me.
Now I am on a new SSDI medication that seems to be working great but we will not know for sure until I am off of steroids.
I am suffering from PTSD from this trauma. My body is not processing it even though I want it to. I am living in this journey and cannot escape it, so my body became numb to negative medical news.
I cannot be on anti-seizure medications since I had an adverse reaction and ended up in the emergency room the day after Thanksgiving. I went on my own as I had a high heart rate, insomnia, agitation, became manic bipolar and even had suicidal thoughts (which I have never experienced before).
I had a moment of clarity that morning on the 28th of November and realized I needed help. My team was able to find out it was the medications making me insane and removed me off of it right away.
I have to – forever- watch my stress levels to not increase seizure risk and stroke risk that I already have from the trauma from my craniotomy.
I did not click with my first therapist and am on the hunt for another- and this is okay. I want you all to know it is okay to not be okay and take time for yourself. Here is what I am currently struggling with and I hope it resonates with some of you:
- Body Image– I worked my butt off the last year and lost a ton of weight. However, I gained about 25 pounds of it back due to the steroids. I cannot be on a diet currently and most foods make me nauseous due to radiation. I am working on being okay with myself through my journey and am still grasping that numbers do not mean everything.
- Adapting – I was always doing something before. Between work, the gym, spending time with my friends and family, volunteering for political campaigns, and helping run a lot of organizations. I had to put most of this on hold. It is a new reality for me and I cannot wait to get back to work but I know I will not be 100% when I am done treatments. Therefore, throughout this adapting now, I will have to adapt later once I am back to work.
- Anxiety – Not knowing what each day will bring between hair loss, nausea, not knowing if/when I will need more radiation, etc. Each day is a new day and I am doing my best to catch all of the curve balls.
- Fatigue – I had mono in college, but this is WAY worse. I can sleep throughout the night and wake up exhausted. I normally have to take a nap by noon. Per my oncologist fatigue hits younger patients the worst and should clear up within a few weeks post radiation – yay!
- Foggy Mind – The radiation is agitating the most important organ in my body – my brain. So I am very forgetful now and am suffering from delayed processing times and short term memory loss. Like some days I cannot remember if I fed my animals in the morning or not. It will go away in due time but it is tough working through it.
So how am I battling and overcoming this? How am I able to stay positive most of the time?
- I am learning it is okay to be sleeping more than I used to, it means I am healing.
- I am reading at least one fun book a month.
- I am writing in a guided journal.
- I am writing in a non-guided journal.
- I am keeping a planner to make sure I do not miss events/appointments.
- I post when I feel up to it.
- I wake up each day and say I am thankful to be here another day.
- I mediate a few minutes each day.
- I exercise by taking my dogs out for long walks and go to the gym when I feel up to it.
- I talk to my close circle when I feel like I’m going to breakdown.
- I am continuing my MBA course work.
- I am realizing this is a moment and not forever.
- I am being venerable about my experience which could help someone else.
- I have been battling this for quite sometime already so I can persevere.
- I look for meaningful conversations at radiation to make it a positive experience.
I am continuing to be bold and positive. Just know not every second of every day is positive for me. We are all human, and staying positive 24/7 is impossible.
Most of us only post the highs in our lives, however we all have lows.
Be bold.
#beccasjourney #bebold #meningiomaawareness

Leave a reply to Janice Barbieri Cancel reply