My 2 Month MRI Update

This is about 2 weeks overdue as I got a call from my radiologist on my way home from my 2.5 hr MRI for my spinal cord, neck, and brain. 

To refreshen everyone’s memory, on April 1st, 2022 – I found out that my leukemia had returned. I had 4 tumors in my brain, 1 in my neck, and 1 at my bra line(the largest and why I knew something was wrong).

After spending a week at the NEW Hospital of Pennsylvania, with my brother one floor and two rooms above me, we were discharged on the same day. Can’t make this stuff up…

While I was in the hospital, I did 3 rounds of regular radiation for the large tumor. After a week of being home, I started 12 business days of proton radiation for all of my tumors. My hair was falling out in clumps on the last day. I buzzed it once I got home. * I wasn’t allowed to cut it at all until radiation was done due to my head piece that aligned me with the machine * I would have preferred to buzz my head before I started radiation. Watching your hair fall out and not being able to cut it when you want to was depressing in itself.

I was done radiation April 26th. I knew that fatigue was the biggest(delayed) side affect of radiation… but a better warning of how EXTREME it was going to be would have been nice lol. I was not prepared for WEEKS of having no energy and spending most of my afternoons on the couch and needed naps every day. This all started June 1st, 5 weeks post proton radiation. And is still continuing to this day. It better end soon or I might lose my mind!!

Back to the results of my 2.5 hr MRI. If you haven’t had one, you are laying down and go inside this machine that isn’t that far away from your face. You have a head piece on that secures you tightly the entire time. And MY GOD is that machine LOUD!! I asked for ear plugs and headphones to play music, and that still doesn’t mask the noise!  

I tried to take a nap, but it’s simply too loud. That morning I had my first little cry breakdown(since being diagnosed this time). I was so nervous about my scan – us cancer patients call it “scanxiety”.  

Throughout my 2.5 hr scan, I just kept saying in my head “dead or shrinking, and no new ones”.

Meaning, I wanted the tumors to either be dead or shrinking, and definitely didn’t want any new ones!! I couldn’t tell you how many times I repeated that. I’m amazed I didn’t cry during my scan, but I wouldn’t have been able to wipe away my tears… so no crying it was!

I had a feeling it was going to be good news because my last lumbar puncture in May, showed no leukemia cells in my spinal fluid. But still, cancer is always surprising and unpredictable! 

On my way home, I got a call from my radiologist. Talk about nerve wracking! I didn’t know how or when they would be giving me the results. The doctor said that the 4 tumors in my brain and the 1 in my neck are GONE!!! Which is obviously AMAZING!! The one in my mid back, that was the largest, had notably shrunk, which is still great news! Because of the size, they knew that one would take longer to shrink. 

Overall, doc and I are very thrilled!! 

I am currently on my last day(14) of a chemo pill Onureg, and that pill has made my stomach upset and caused a lovely rollercoaster of constipation and the opposite… I will be doing this 14-day on/off cycle until my second bone marrow transplant. We still don’t have a set date, but I will most likely be getting admitted to the hospital(for a month) in late August/early September.  

Until then, I am lucky enough to spend a month in one of my favorite places, Ocean City, NJ with my family. I’m hoping these two weeks off of chemo give me a chance to regain my energy and have some fun! I’m looking forward to diving into the waves, lots of sea glass walks, boat rides, sunsets, playing tennis, Mack n Mancos pizza(I refuse to call it Manco Manco lol), Voltacos cheesesteaks, and most importantly spending time with my family ❤️