Early Call

With a 1:30 am wake up call, I'm in bed and it's just past seven. It was easy to head to bed since I can't eat much anyway because of scan restrictions. No dairy, legumes, animal proteins, nuts, seeds, soy products - I can't even remember all the restrictions so I focused on what I could eat, which is fruit and veg. I'm not hungry though, just physically exhausted. I can barely keep my eyes open because last night's sleep was terrible - wide awake until 3:00 am.

I had been fine for the last few weeks, my mental state has been a solid 8-10, but last night it hit me. It was inescapable. We have a scan in the morning that will show, with more than a 80% accuracy between necrosis, and recurrence or scar tissue. It's a brilliant tool to have, but one that leaves little doubt, and really no denial either. At first, I thought this could go two ways. Tumor or no tumor. Then I started reminding myself that I won't die of this tumor tomorrow, or next week, or even, heaven forbid this year. We're playing the long game. It's exhausting, but as you get to know the strategies, and learn from others, there are hundreds of thousands, maybe millions of different combinations of treatments. I'm certainly not at the end of my rope, even though, sometimes it feels that way. 

I don't really want to do the scan because I don't want to have brain cancer, but since I do, I might as well get some answers. I have no expectations; I have no premonitions. I have hopes that this blob has a maxSUV of under 3.0 (which to my understanding will not be considered recurrence), but there are factors out of our control, variables that I can't even pinpoint. 

So here I lay in bed, hoping for a quiet power. I hope for strength to get me through the days ahead. I will allow myself to laugh and have fun, even though on the inside I might feel like crying. If needed, I will permit myself that indulgence too. I hope for my friends that they are safe, and in this exact moment, are smiling. 

Results will be Monday, I will try to post them as soon as I am able. Thank you for the continued love, it's much appreciated, but above that it's needed too. Sometimes I can literally feel the hum of people's energy, and who knows maybe I'm just crazy, but I think it's real. 

Scan is Scheduled

We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it!

Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th.

Ha! Makes me laugh every single time.

I bounce from terrified, numb, then a little ambivalent, and finally total denial. That's when I get my good workouts in, though, during the denial phases - so there's always a silver lining. 

Also, you can't beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We'll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it's just waiting for results from there, and there's nothing you can do about that. Might as well enjoy!

Start Now, The Creativity Journal by Kate Neckel

I haven't convinced myself that the tumor has been growing again, even though that's the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We're working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I've been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I'm going to keep chugging along, nose to the grindstone and all that. Thank you for your patience! 

UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)

PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo