Friday, May 10, 2019

Roller coastering

Okay!  I finally have an appointment at the Mayo Clinic, but not the close one in MN.  At the Mayo Clinic in Jacksonville, Florida!  Long story of roller coastering between phone calls with incremental updates.  I'll try to be brief.  

So, you'll recall from my previous post that the current situation is that the docs think that Lloyd is not quite dead.  I'm not yet all in on that conclusion, because the conclusion seems to change from scan to scan.  One scan is all high fives, tumor is dead!  And the next scan is all heavy hearts, Heather your big ass boob of a brain tumor might be yet alive in a small piece of itself.  I have another scan on May 24th, and from that it might be more conclusive if it is indeed bigger, and where it's bigger, and how quickly it's growing, etc.  In the meantime, I've gone up to 3 mgs of steroids per day, and I'm much more comfortable, and I'm hoping that being on more steroids will also help the outcome of the scan.  As in, maybe my swelling will be less, and so Lloyd will be less aggravated and look more Pearl-like.  It's all about appearances.  We need a Pearl-like image, not a Lloyd-like image!  

In the meantime, I have been working on a referral to the Mayo clinic in Rochester, MN, to see if they have any additional treatments to offer me.  My entire medical record was sent up there last week. The nicest person, Ann, called me with some questions, because my record is so lengthy that they were having trouble getting the chronology right.  She asked what my current problem is?  Lung metastases or something else?  I was glad to say that the lung metastases are all gone, but I was troubled that they seemed to have missed the point that I have an enormous and ongoing brain tumor!  After I answered her questions it seemed like we were all on the same page in regards to the purpose of the referral--what can you do about Lloyd?  Then the Mayo Radiation Oncology Docs reviewed my case for a few days.  Unfortunately when Ann called me back, she said that they determined that they had no further treatments to offer me.  They agreed with my local Dr. Rad Onc that I've received too much radiation to the region already.  BOO!  BUT they gave me a twinkle of hope; they referred my records to the Mayo Neurosurgery department to see if I was a candidate for this new surgical treatment called LITT (Laser Interstitial Thermal Therapy).  Apparently it's a minimally invasive procedure whereby the surgeons implant a little thing in the tumor that emits heat and cooks the tumor dead.  I was super excited for about a day, until Ann called me back to say that the Mayo NeuroSurg team determined I'm not a candidate for LITT because Lloyd is too big!  Ann is so sweet--she sounded like she wanted to reach through the phone and yank Lloyd out of my head for me.  She was very empathetic about the news that Mayo MN was not going to help me in any way. 

Before Ann hung up the phone, I said hold on hold on hold on!  My sister (Holly the Hero, mother of Calvin the Cure) found a surgeon at the Mayo clinic in Jacksonville, Florida, who has developed a new technology to remove deep-seated brain tumors such as Lloyd.  I asked if anyone in the Mayo MN Neurosurgery department knew about this or could do it.  Ann took this comment back to the doctors, who then referred me to this NeuroSurgeon at Mayo in Florida.  The NeuroSurgeon in Florida has already reviewed my records and thinks I'm a candidate for his procedure.  So now I have an appointment in Florida in mid-June to discuss a possible Lloyd removal option.  Not sure yet if I'm actually going to go, but I have the appointment if I need it.  It was funny making the appointment, "Are mornings or afternoons better for you", "Well, I haven't looked at flights yet, so who knows."  Here is a news article about his technology  My understanding of what's special about their procedure that they use pliable instruments instead of metal instruments and then follow the natural paths of tissues in the brain, instead of just jamming through the most direct route to the target and damaging tissues along the way.  The doctor I have an appointment to see just published a scientific article showing pretty darn good outcomes     Conclusion: (pasted from the article linked in the previous sentence) This minimally invasive approach can be used to achieve extensive resection with minimal morbidity for arguably the highest risk metastatic brain tumors. So, I'm still on the roller coaster ride (somewhere).

As I've been thanking Holly almost daily for finding this possible treatment for my Lloyd problem, she sent me the most hilarious message.  It's a quote from the movie Billy Madison, which was a family favorite when we were teenagers.  

Woah woah woah Miss Lippy!  The part of the story I don't like is that little boy gave up looking for Happy [the lost dog] after an hour.  He didn't put up posters or anything.  He sat on the porch like a goon and waited.  That little boy got to think:  you got a pet.  You got a responsibility.  If your dog gets lost you don't just look for an hour and call it quits.  You get your ass out there and you find that f****** dog!    

Holly, I deeply thank you for your hours of hard work "hanging up posters" and getting your "ass out there" for your lost dog and big sis. <3  At the present moment, your research has turned up the best option I have!  But I'm yet holding out hope for a Pearlish result on the next scan, however unlikely that may be. 

Russ and his Roller coaster Ride with Rainbow the Rooster

One more roller coaster story for you, and some of you may have heard this story in person because I've gotten a lot of mileage out of this great tale.  This roller coaster is about my dad, Russ, and his Rooster named Rainbow.  My dad told me this story over our lunch date at my last MRI appointment, and I thought I was going to die laughing.  Russ is mild-mannered, no-nonsense backyard chicken guy, with about a dozen chickens in his flock at any one time (until the fox or coyotes or raccoons disappear some into the woods).  Well, the last time he restocked, he accidentally ended up with one rooster.  He kept the rooster, which is a beautiful bird, and the grandkids named it Rainbow because its feathers are much more colorful than the hens.  Well, Rainbow was a delightful family member for the first few months, crowing pleasantly in the morning and participating in normal free-range flock activities, such as pecking in the garden, or romping with the dogs and cats.  But then Rainbow hit puberty and charged my dad.  Several times, perhaps, I guess?  Well, my dad was having none of that!  What if Rainbow were to attack a grandkid?  So Russ decided to teach Rainbow a lesson.  He marched into the house and put Rainbow up for sale on Craigslist!  It was time for Rainbow to go. 

But I'm delighted to report that after a few days had passed, Russ and Rainbow worked out their differences!  Rainbow started behaving like a perfect gentleman and even let Russ pick him up on occasion.  So Russ removed Rainbow's listing from Craigslist.  Apparently Rainbow has been well-behaved ever since, and Russ has sworn to never put him on Craigslist again.  Rainbow remains a member of the flock for now!  Although Russ continually questions if Rainbow's incessant crowing annoys the neighbors or not.  Rainbow is a vocal rooster! 
The moral of the story is...don't misbehave at Grandpa Russ's house!  He'll try to unload you on Craigslist!   


  1. Been marinating on this for a day. I think the Florida trip sounds very exciting. Not #thoughtsandprayers but some real NEW science! No matter if you qualify for the surgery there will be more data to contemplate and compute in the equation, and new eyes! Another hill for the roller coaster ;). Love you!