It’s been some time since I’ve provided some sort of formal update and boy oh boy has a lot happened. Apologies in advance for the lengthy post!
First things first - I named my brain lesion Blip. And he’s been causing a lot of chaos lately.
To provide a quick recap - back in August Blip showed some subtle change during my surveillance scans that had everyone on high alert. Because we didn’t feel comfortable waiting until November scans to see what he’d do, I had an intermediate MRI in late September. For this MRI, we added an extra sequence that was supposed to measure blood volume to Blip – the idea is that if there is increased blood volume, that would indicate disease and if there isn’t increased blood volume, that would indicate scar tissue. Sadly (and as anticipated) Blip was too small to really give us anything definite. He’s also very close to a major brain vein (oh, that’s fun to say) making that test extra difficult to be conclusive. The September scan showed that Blip was reduced ever-so-slightly compared to August – a win!
On the way home from my appointment with my neuro-oncologist, I got really, really upset (despite the good news that Blip hadn’t grown). At this point, we had been talking about what this could or couldn’t be for what felt like weeks and I was exhausted. I handle my surveillance scans really well but these extra scans really threw me for a loop. Although I agreed with the approach entirely and appreciated Dr. P’s overly cautious nature, I knew I didn’t want to be inside an MRI machine every 6 weeks just to see what Blip was up to. I wanted to consult with a neurosurgeon to learn more about the pros and cons of having him removed.
This next step came with its own slew of mind games. Was I really considering brain surgery to reduce my Blip-related anxiety? I’ve proved to myself time and time again that I’m very capable of working through my cancer PTSD, but was this too extreme? Would I really get the satisfaction I was looking for? I consulted with a neurosurgeon and at the end of the appointment, he told me that I was in control here and there was something so rewarding about finally being in control of a piece of my cancer journey.
So we scheduled the brain surgery! Jk. I told you this would be a long update ;) My neurosurgeon suggested I try a steroid for a month before we made any cutting decisions. Since at that point my November scans were ~4 weeks away, the timing made sense.
Enter: Dexamethasone aka the devil drug.
I cannot say enough horrible things about this drug. I thought I knew the major side effects of steroids, but the Dex was absolutely awful. I was puffy, hangry, flushed/sweating, and just generally uncomfortable for the entire duration of taking it. I woke up nearly every night absolutely drenched in sweat and I was emotional as f*ck! Also, my entire chest/back was/is COVERED in acne. At one point, I just started crying because I was upset with how grumpy I was. Praise Noodle and everyone that had to deal with me because I was an absolute gem of a human.
I tapered off the steroid just in time for my next set of scans. If Blip was gone, then this would all be worth it and I really, really needed Blip to be gone.
He wasn’t. In fact, Blip was more prominent and grew ever-so-slightly (again).
At this point, all signs had pointed to decaying scar tissue, but now that Blip didn’t react to the steroid, everyone was starting to question things again. I didn’t have any new lesions in my brain, and my other scans were clear, which was the biggest thing I was holding on to. My Melanoma was so aggressive that surely if this was disease, we’d be seeing it elsewhere, right?
I got home from my appointments to review my scan results and my neurosurgeon called me. He said “I see you have an appointment to see me in a few weeks and if you’re going to tell me you’re ready for surgery, tell me now and we’ll get things in motion.”
At this point, we were all tired of wondering. We had done our due diligence with the steroid and enough time had passed. By November 12th (two days after my scans) I had my surgery date scheduled for just 10 days later.
Leading up to Surgery
The week leading up to surgery was packed. I wasn’t nervous about surgery – I was oddly excited? If I can use that word? People kept telling me they were sorry I had to go through this, but I didn’t feel that way at all. As I mentioned above, I had advocated for this and I felt like my medical team was finally on the same page. The entire week, I was complaining about headaches and back-pain. I assumed I had done something stupid at one of my dog activities and I was paying for it until Saturday night (two nights before surgery).
I had been using Icy Hot all week on my back and developed a rash. My skin was so sensitive thanks to the antibiotic to clear up the acne from the stupid devil drug that I was sure that’s what it was. Well, I got out of the shower looked at my rash and realized it was a ton of tiny blisters. Something told me this was shingles so I googled a picture of shingles and it showed me everything I needed to know. I came out of the bedroom and said to Noodles “I think I have shingles and I’m about to have a panic attack.” – A full-blown meltdown ensued. I was so terrified that I wouldn’t be allowed at Mayo for my surgery on Monday since my left side was covered in shingles. After a panicked, tear-filled call was made to Mom, Dan took me to urgent care to see if I could get an official diagnosis.
No one was allowed in urgent care with me, so I cried in the lobby by myself. My blood pressure was so high that they had to take it more than once and I could barely tell the urgent care doc what was wrong because I was sobbing. She confirmed that yes, I had shingles and put me on an antiviral right away. I then called Mayo and they confirmed that my shingles wouldn’t impact my surgery, but they appreciated me letting them know. PHEW! Apparently the month of the steroid coupled with the stress of brain surgery caused a shingles outbreak.
November 22nd aka Blip Eviction Day!
I had to be at the Mayo at 6am Monday morning and I was ready. I was a chatty-Cathy in pre-op and cracked far too many jokes. I had found out the previous week that I was going to be awake for part of the surgery, so there was a decent amount of prep for that piece. They told me I may or may not remember being awake so naturally I was going to try my hardest to remember it!
And I did! As I fell asleep in the OR, the anesthesiologist kept repeating to me, “you’re going to wake up next in the OR and in the middle of surgery and your job is to remember that.” I remember waking up and getting yelled at for nodding my head - ha! The reason I was awake is because Blip was really close to my language center - particularly my ability to ‘name’ and identify words for things. So they woke me up, asked me to talk for a while and identify a bunch of pictures on an ipad. At some point, someone asked me about my dogs and I told them all about Zazu, Nivo and our dog sport, flyball! I remember I started crying because my head hurt and before I knew it, I heard my neurosurgeon say “alright, put her back to sleep I’m ready now.”
The next thing I remember is waking up in recovery! I spent the night in the hospital and was woken up every hour for neuro checks. It was by far the most restless night of sleep I’ve ever had, but the following day I got to go home. Seems pretty nutso to have brain surgery and spend less than 24 hours in the hospital, but here we are.
It’s been a week of recovery this far, and I’m feeling pretty good. I could make an entire other post about the surgery prep and recovery so I’ll save those details for another day.
The best part (and if you’re still reading I’m sure you’re waiting for this particular piece)
— BLIP WAS SCAR TISSUE.
We got the final pathology report late last week and there was no evidence of disease! Blip is gone & I’m still cancer free!!
Enjoy the pics (or don’t if you don’t want to see my head staples)!