Friday, May 31, 2019

Pearl Jr.'s birthday has been scheduled!!

What a day!  My heart is so full from all of the great things that went on today.  First of all, it was my daughters' last day of school.  From left to right, last day of 5th and 4th grade.  And it was a beautiful day to walk to school, which was fortunate because we've had rain and storms alllll week.  So grateful to walk on this last day of elementary school for my now-middle-schooler, just like we did on the first day of kindergarten so many years ago.  We have walked every day that the weather has permitted us to do so!  0.7 miles.  My marvelous neighbor, M, and I are a walking school bus! 
It was school spirit day, so they painted their faces with the school colors.  Thor the dog has excellent school spirit--black fur with orange leash.   
Secondly, when I got back to the house after the walk, my phone started ringing, and for once it wasn't a robo-call!  It was Dr. Deep-Seated Tumor Neurosurgeon, personally calling me to chat about things!  WOW!  I was very impressed that he would take the time to do this.  Usually the nurses call, sometimes the schedulers but usually the nurses make the call, answer my questions, then transfer me to the schedulers.  This was Dr. D-STN  himself!  He called to say that the tumor board agrees that surgical removal of the tumor is my best option at this point.  He confirmed that a little bit of Lloyd will remain in there, and that Dr. Radiation Oncologist has a plan to blast it with a CyberKnife (I don't know anything about this yet, and google is yielding too many answers at this moment so I'll wait until I've had a chance to ask my questions then blog it up).  He also told me a bit more about the surgery:  He'll just make a small incision in my right eyebrow: eyebrow craniotomy is what it's called.  That's it!  So I haven't read this yet, but here's what I think is a reputable a link from Johns Hopkins to information about the eyebrow craniotomy procedure.  I don't plan to read it until after the procedure.  Dr. D-STN said that the main side effects include black eye, possible eye swelling, and possible eyebrow disability for 3 months.  Most patients recover full range of eyebrow mobility by that time, which is heartening because my right eyebrow is the one with enhanced abilities!  It's the one I can raise by itself!  Eyebrow joking aside, guess how long my anticipated hospital stay is....?  You'll never guess.  Two days!  He said I'll be up and walking the SAME DAY, and in the hospital a mere 2 days, (he mostly said two days, but the range he eventually gave was 2-5 days.  He said if my eye swells shut I won't be discharged until it opens.  And I seem to be a super sweller!  So we'll see.  Also, if I experience any of that left-side paralysis business that would extend my stay as well, into some sort of inpatient physical therapy.)  The picture he painted very much put me at ease.  Of course it's a big deal, but this sounds super manageable!!  

I think I'm going to refrain from putting the surgery date on the blog, because everyone wants to be soooo helpful but sometimes we are overwhelmed by the outpouring from Carnation Nation!  My goal by keeping the date private is to allow my kids the space to deal with all of this as they will, with the people they are closest to, without me inadvertently creating a circus while I'm in the hospital.  You can expect that the deed will be done by the close of June, and if you need to know the date you will be communicated the date.  When I come out the other side with my wits about me, one of the first things I'm gonna want to do is blog it up!  Because that's the way I roll. 

In regards to CAR-T, I finally got through the new patient hotline, and someone emailed me instead of calling, which was very nice.  Also, I discussed this CAR-T Her2+ brain metastasis clinical trial opportunity with Dr. Oncologist, and she wasn't too excited about it.  She said that the side effects of CAR-T can be pretty nasty.  I read about them, and I thought that they didn't sound too bad compared to dying of metastatic breast cancer.  BUT her main point is that I don't have cancer anywhere else, just the one brain met, so if we can get it under control with surgery and follow-up radiation, that's still my best option.  Plus, the CAR-T Her2+ trial is phase 1, so that is not very far along.  Phase 1 trials are toxicity trials.  SO, CAR-T Her2+ brain met trial is not on the table for hbomb at this point in time.  And that's fine with me!  The location of the trial is in California at the City of Hope medical center. So that would have been another issue, too.  One less thing to stress about!!

Thirdly, summer vacation #1 will commence very soon, and will occur before Pearl Jr.'s birthday/Lloyd's death day.  We're coming for you, brother!  

7 comments:

  1. Heather, you are a brave, brave lady. Bless you. I look forward to hearing of Lloyd's demise.

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  2. You can thank your mother for your enhance eyebrow capabilities. Your other amazing traits are from me. Go get'em kid.

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  3. Hope all goes well. CAR-T looks like it will be the next big thing...have been listening to all the webinar to be ready for when the patient samples come in from the trials. But it sure sounds like your surgery is a great option and I hope it will be so successful, you wouldn't ever need the CAR-T to begin with!

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  4. Yeah.... I never could raise my eyebrows or wiggle my nose or ears... but I can play "ping-pong" with my eyeballs. So... you know... that's something.

    Happy to see a plan in motion, a vacation happening, and love all around. Big Hugs.

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  5. Except from Heather's Log of the Family Vacation to Yellowstone Park - August 1994:
    Day 11, Thursday, Aug 9th - 10:40am Hello! I can't believe I didn't write last night! Oh, well. We camped at this little campground way back in the woods by a bible camp. In fact they're riding horses now. Anyway, it doesn't have showers, and there are pit toilets. It's really nice. As soon as we got the camper up last night, it started to rain. Luckily we already had a blazing fire going. We ate pork ribs...mom just picked a booger out of my nose...and lettuce and spinach salad. I had a taco instead of ribs. Yummy! Then it stopped raining. Mom and dad picked up while the 4 of us made a skit thingy. You know how you sit on someone's lap, they sing/say the words and do arm movements, and you lip them? Well, we did that. Holly sat on my lap and we did the "comet" song featured a few pages before. Hil sal on Hol's lap, and they did the "Song that doesn't end" featured a few pages earlier. Hil say on Ry's lap and they did the "skunk song". It goes like this:
    Well, I stuck my head in a little skunk hole
    And the little skunk said 'well bless my soul
    Take it out take it out take it out take it out
    Remoooooooooooooove it.

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    1. Dad these are always so fun! What is your method? Do you just open to a random page? You always manage to find great material!

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