The Wonders of Modern Medicine

Sandi here, updating for Stu.  Today I walked over from our rental apartment just 2 blocks away from the hospital in torrential rains with my summer sneakers on (sigh).  The storm had arrived in full force!  That storm made me think of the medicine flowing into all of the bad areas of Stu's beautiful brain.  I wondered what he would be feeling like as the final drips of the drug were finishing their journey and beginning their own storm.

I walked like a wet dog to find Stu cheerful, sassy as ever and full of energy! YAY!! He looks great, he had to do the mandatory brain surgery clearances for OT and Speech to leave the ICU, where they had to monitor him during the 24 hours of the infusion.  He rocked the tests, as we knew he would!  You'd hardly be able to tell that Stu had a THIRD brain surgery, as he is simply doing great.

I keep taking pause to think about all he has done to personally fight this.  He is really, truly such a strong, driven and humble person.  I'm so thankful for his drive, his fight.  Ok, I know... I loved him already, but really he is so inspiring!

The hospital staff and our doctors have been so wonderful, so positive and so in line with Stu's style of fighting this.  We are so well cared for and we feel so positive and assured in the care Stu is receiving.

We have been getting some great support from the Southern California collection of Team Stu too.    Ljupco came to visit today, Dana and Aunt Eileen, Cousin Katie and Leland are coming tomorrow, then we are joining Ljupco and family for dinner!!  (Cousin Katie wasn't going to let Cousin Jake show her up with 2 days of visits -- so she's brought for the nurses  yummy desserts from Lemon Poppy Kitchen ).

We CLEARLY need to get down to the LA area more often.  Fortunately for us, it will be in the plans with this clinical trial and we look forward to seeing you all in the future.

We won't actually know too much about how this is working until after the holidays when the inflamation wears down, and we might not no much by then either.  We are hoping for a miracle of course and your mindfulness, prayers and positivity will help.

You can text Stu, or email or leave a message on the blog.  He is doing really well and handled this very well.

Thank you for caring.  It means so much to not be doing this alone.  Your texts, emails, comments and visits are so amazing.
All the best to you and yours!
Sandi (and Stu)

Surgery went fine

4 hour surgery only went for 2 hours!  Trying to repurpose Stella's saying that she used after her resetting of the arm procedure, as the anesthesia from my surgery wore off, I yelled "I'm back, bitches".  It wasn't as funny as when Stella used it, but Sandi got the idea that I was in good shape and in good spirits!

Getting the cousin contest going, LA Cousin Jake is back in my room (we had dinner with him last night).  Sure, we are eating food and watching movies, but what the hell -- Cousin Compete.  Ha!!!

All good.  Moving to a lower intense room tomorrow afternoon.

Stu

Looking good for 11/28 surgery

Did some pre-Op at the hospital today, and then got to play.  Sandi and I had a romantic sunset smooch (luckily, with Los Angeles friend/neighbor right there as the cameraman).  The sunset is actually much brighter than the picture shows.  Then, Cousin Jake, Leland, Sandi, and I had a Taco dinner and pie (the pie below wasn't eaten but rather just bc Jaida would like Cereal w/ Pie).  It was a perfect setup for my 7am surgery tomorrow. 

The staff at Providence John Wayne in Santa Monica is super confident and friendly -- they instill a bunch of trust.

Sandi can publish more after I get released in the afternoon. 

Off to bed for the early wake up!
stu

Surgery is 11/28 in Santa Monica

Rain cleared out the smoke.  And, that seemed to get everyone on board that they can confirm my surgery for 11/28.  I'm doing the surgery and clinical trial in Santa Monica -- not ideal with the family up north, but we're all up for trying something "systemic" to attack the tumor (and sleeper cells) with this clinical trial.  (Many of you forwarded me info about the polio trial -- it's similar to that).

My schedule will depend on how I feel after surgery.  We're hoping the body will fight back -- we're hoping for "controlled" inflammation which says that the body is targeting tumor cells and fighting back.  But, too much inflammation can lead to risks.

For now, we're getting ready to celebrate Thanksgiving with the extended family.  And then, we're going to go down to a Dude Ranch and check that out!  Stella probably can't ride horses bc of her broken forearm, but we'll find fun things to do.  Stella wants to catch a fish 1-handed.  Jaida, I predict, will gravitate to a horse, be smitten, and ride all the time  -- so we'll be lucky to see her all trip.

More soon,
Happy Thanksgiving,
stu, sandi, stella, and jaida

Waiting -- still exploring options

Just wanted to send a quick note that I didn't go into UCSF surgery today.  I'm still evaluating clinical trial options, and will hopefully be "accepted" by the pharmaceutical sponsors shortly.  Certainly, not great being in "waiting" mode, but am looking forward to a favorable decision (hopefully today).  Once I know more and have dates of my next steps, I'll do another blog post.

Interesting new options are presenting themselves

So, to catch everyone up, we've been having fun with family, friends, and work over the last 3+ months of treatments -- health-wise, I've only been doing the 5-days chemo every month and clinical infusion.  All seemed to be going well, and I went in recently for my ongoing 2-month MRI, and me/Sandi were kinda expecting a clean "bill of health" -- but alas,  the doctors found some growth that they weren't expecting.  So, we're now at:

• Let's get in there and see what the growth is:
• Just dead tumor cells (yay = continue what we're doing!)
• Just scar tissue and inflammation (yay = continue what we're doing!)
• New growth (boo!  But investigate some new clinical trials that may now be open to me)

So, the bummer in all cases is that it looks like I'll need surgery again in the next 1.5 weeks.  But, we caught whatever this is fairly early, so they are really optimistic that it looks very promising.  And, we'll know more about the cells soon to take proper action.

If, unfortunately, there is new growth, there is some good news -- there are some pretty impressive clinical trials that I may qualify for (Precision Medicine working with a DNA expert, Virus Vaccine, and other therapies).

I went up to talk to the surgeons and teams today.  They all say they can't see anything from the outside and their baselining of me -- which makes their tests look good ;)

More soon,

This spun us around a little bit, but we're doing well.  Thanks for your steadfast support, it remains the stilts that hold our house up!

stu, sandi, stella, and jaida

Decisions to be made soon

We've been having a great time with family and friends.  Golfing at Cygnus.  Golfing at Los Altos Country Club.  Halloween was great hanging out with cousins and friends.  Watching Stella do her cheerleading has been awesome (and she is trying out Wed for Competition Cheer -- which is potentially more dangerous than Sideline Cheer).  49ers.  Eagles.  Friends' 50th parties.

Today, was my 2 month check in for my MRI.  I've been feeling good, working, etc.  But alas, the results didn't come back as clearly as my MRI from September.  In short (who you calling short!!!), they saw something -- and it could be scar tissue (good) or could be re-growth (bad).  This is all happening real-time, and doctors are scanning the image -- and may have some recommendations on decisions that need to be made soon.

More soon,
xoxo,
stu