Activities

Quite a bit has happened since my last post, but also nothing at all.  The full radiology report of my previous brain MRI scan was released the day after I blogged, and I have since visited with both Dr. Radiation Oncologist and Dr. Medical Oncologist.  The full radiology report said that my scan result was consistent with "disease progression".  This is because in addition to the swelling, Lloyd has a corner with increased blood flow.  But there is still uncertainty about what's going on in there because the increased blood flow is not associated with increased thickness or other signs of growth.  SO, we're consulting with experts as if Lloyd is still growing, but we're not rushing into any treatments or decisions.  I'm having another scan on May 24th, to see if it is more definitive or if Lloyd has changed in the 6 weeks between scans.  That would be informative.   

Next step:  get a referral to another medical facility, the Mayo Clinic up in Rochester, MN.  This is because Dr. Radiation Oncologist says he can't give me any further electron-mediated radiation to the site of Lloyd.  The risks to my healthy brain are too great.  But he said that his colleagues at Mayo Clinic have a photon radiation that might work for me.  Apparently we have more ways to control photons than electrons, so the photon radiation can be more finely tuned and will not cause as much collateral damage.  So, I'm somewhere in the process of pursuing that appointment in the next two weeks (hopefully I can get in before the next brain scan).  

Next step:  meet with Dr. Brain Surgeon again, see if he's got any news or ideas.  My sister found a news article about a doctor at the Mayo clinic in Florida who developed a new surgical tool/method to remove deep-seated brain tumors such as mine.  https://discoverysedge.mayo.edu/2018/07/11/improving-access-to-deep-seated-brain-tumors/  I'm not booking tickets to Florida or anything, but I do think it's worth discussing as Lloyd continues to be undead!  

Next step:  book an additional family vacation.  I've already made arrangements for us to go to the Black Hills (i.e. Mt. Rushmore, etc.) in August, but if Lloyd is undead this seems like too long to wait.  So my genius spouse said, how about we take two vacations?  YES.  YES.  That is a WAY better idea than the hassle of rebooking!!  My brother and his wife just bought a new house (they haven't even moved in yet, lol), so we might go to Seattle and bother them for a week.  We can help unpack!  Or cook your meals while you unpack!  Additional motivation for vacation #2 is my dear friend, G, who passed away last week from metastatic breast cancer.  I've gotta make the most of the days that I have!  We all do, really. 

ALSO, I've increased my steroid dose to 3 mgs per day and am much more comfortable on most days.  I guess I didn't even realize how uncomfortable I'd gotten!  But my head is feeling a touch better, so thank you, steroids.  

ALSO, we have some fun projects going on!  The spouse demolished the old wooden and somewhat rotten shed, and has ordered a new 10 x 20 shed!  It's basically a small house!  We don't have a garage, so we're super excited about this extra storage and work space.  It has two lofts in it, so the kids are hopeful for a play area.  My best friend growing up had a play area in the loft in her garage.  I always wanted to play up there!  But it was prohibitively hot most of the time.  

My project is that I'm painting the upstairs bathroom.  It's merely halfway done, but the girls enjoy helping me.  One more afternoon of good energy and it'll be done!  I picked a shade of blue that was recommended as inspiring "serenity".  I was a little worried it'd look like that country blue from the 90's, but that is not at all the case!  On the wall, it has a pleasant greenishness to it.  Huzzah!  

A few more pics from our joyous spring break trip to Santa Fe!  I failed to get them to post in order, but I think it won't trouble us too much. 

My stepdad is a professional oil painter (artist), and his art studio is attached to his home.  http://rogerwilliamsart.com/  He graciously shared his materials and expertise for a few hours of painting.  E was calling herself "Mona Lisa #2" as she posed for a portrait painted by A.  E was very patient and only got up for 2 breaks.   

Portrait is coming along nicely!

This is right outside their backyard, rural Santa Fe, NM.  Hiking to the arroyo (dry creek bed).

On our hike to the arroyo.

Also on our hike to the arroyo

Before we went to Santa Fe, we stopped at the Great Sand Dunes National Park.  The dunes are shown here as the gray material between the greenery on the bottom and the mountains in the background. 

My spouse turned into a little kid at the sand dunes!  He took off with his sand sled, heading for the tallest dune within reach, and we didn't see him for 20 minutes.  He came back to us looking like this.  Ha! 

The family, holding our rented sand sleds.  The park does not rent the sleds in the off season; you have to plan ahead and rent sleds from a nearby outfitter. It was such a beautiful day to visit this park, sunny and not too hot or cold.  

The beautiful snow made for wet sand, and wet sand is not good sledding sand.  Here is E struggling back up a dune.  She had a blast!  Said she felt like a fairy in a sandbox. <3