Pearl does not exist

So, today's scan confirmed, beyond a doubt, what has been suspected:  my unwelcome brain tumor, named Lloyd, is indeed growing.  It was noticably bigger in the past 6 weeks since the last scan, and if you line up the same cross section from a whole bunch of scans you can see that it is clearly getting bigger over time, since before whole-brain radiation.

We still don't have a firm plan for the next steps.  BUT some things are in motion.

I really don't want to go to Florida for brain surgery.  I think it would be a very inconsiderate choice for my family.  What if I don't wake up?  Or am incapacitated such that I can't return to our Midwestern home for months?  Does the family move to Florida?  That would be terrible.  SO, I had a top secret consultation with my original Dr. Brain Surgeon, to ask him questions about the surgical risks and options now that all non-surgical options have been explored.  Just the spouse and I went, thanks to my amazing MIL for taking the girls for a sleepover and bringing them to school that morning.  Dr. Brain Surgeon is also Prof. Department Chair of Neurosurgery.  He said, I have a guy in my department who is an expert in deep-seated brain tumor surgery.  Can you wait an hour and a half to consult with him when he gets out of surgery?  We said of course!  So, we got some coffee and visited the medical museum while we waited. 

iron lung.  Thank you, polio vaccine, for making this machine museum material!!

Dr. Deep-Seated Tumor Neurosurgeon was awesome!  He apologized for making us wait, and we tried to thank him for working us into his schedule on what was clearly an operating room day for him and not a day in the clinic.  He came to us from a brain surgery, and when we left he was proceeding to another brain surgery!  Bonus was that he had heard of Dr. Florida Neurosurgeon and says that he uses the same technology (BrainPath).  And he was confident that he could remove 90-95% of Lloyd if that is what we decide to do.  One of our questions was if that was enough.  As in, how much time will I have, and what quality of life will I have if I do/don't do surgery?  Because I'm willing to go out with Lloyd gracefully if the risks outweigh the benefits of surgery.  We just aren't sure yet.  The main long-term risk of Lloyd removal include loss of function of the left side of my body, the main short term risk of Lloyd removal is fluid build up in the cavity left by Lloyd's removal.  Dr. D-STN would install a short-term drainage tube should this happen (sounds horrible!!). 

Dr. SRS Expert Radiation Oncologist said that if Dr. Deep-Seated Tumor Neurosurgeon can get out 90-95% of Lloyd, he can give any remaining pieces targeted radiation.  This was very good news!  Because one of the things about surgery is that they can never get all of it, and surgery is usually followed up with some other treatment.  So I was excited that, although I previously understood that the region can't have more radiation, if the region to be targeted is smaller then yes in fact I can have more radiation.  Also, these doctors are going to bring my case to their institution's tumor board on Tuesday to discuss the best course of action with all of the cancer experts at the institution.  So, I'm in really good hands guys.  

Only other thing is that Carnation Nation has struck again!  The sister of one of my dearest friends from grad school, K, emailed me to tell me that a new immunotherapy called CAR-T has just opened a clinical trial for patients with Her2+ brain metastases.  I've tried to call the hotline and get information but just get voicemail.  And I'm too tired to put all of the right links here for you guys to learn about this...I'll get em in my next post.  But suffice it to say that CAR-T involves harvesting some of your body's own immune cells, (specifically T-cells), probably and hopefully from a blood sample, and engineering them to attack the cancer cells in your body.  I SO hope I qualify for the trial!  I'll be my own GMO!!  Thank you so much, A, sister of K, for telling me about this trial!!