Friday, February 23, 2018

Quick! I need to patent my tapestry-filled healing palace!

SF, from high school:  I don't know if your mom reads the blog, but she sent me the most lovely bracelets today!  I wore them to my scan for good luck.  I'll try to get a note in the mail to her.  Thank you!

A (sis):  I wore the turtle bracelet for good luck, too.  

Oh man, I can't wait to tell you about my thrilling brain MRI results!  Remember how I told you, because I had been told by allll the doctors, not to expect any changes out of Lloyd yet?  Because not enough time has passed and so even though the radiation will have killed Lloyd, my body will not yet have reduced him in size?  WELL...they all were WRONG in my case!!  SO unbelievably wrong!  They clearly have not toured my tapestry-filled healing palace, nor have they met my hungry absorptive orchid, nor have they beheld my yellow paintbrushes, nor have they encountered the healing power of carnation nation!!!

MY body has reduced Lloyd by 75% ALREADY!!!!  75%!!!!  This is amazing for at least two reasons:  1) little to no reduction was expected so soon (as mentioned already), and 2) at the outset I was told to expect 50% reduction in the size of Lloyd.  So not only has my body reduced Lloyd's size in Olympic-record speed, but it has also done so at a greater-than-expected magnitude.  Huzzah huzzah huzzah!!  All of our hard work has paid off, guys!!!

You KNOW I have pictures!!!  Dr. Radiation Oncologist was so excited to show them to me!  My sisters were at the appointment with me, and although I was totally engrossed in the pictures, my sisters were watching Dr. Radiation Oncologist, and they said that he was like a proud papa:  scrolling through the images; finding the best images for me; then smiling, rocking back on his heels, and folding his arms when he paused for me to take a photo. 

Two frames of my brain that compare Pearl (left) to Lloyd (right).  Pearl and Lloyd are the white blobs in the center-left portion of my brain frames.  Note that Pearl has retreated from the midline of my brain, hence the complete disappearance of my headaches!  Lloyd can be seen to be pushing up on my brain midline, which was causing the headaches.  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).  
75% reduction, guys!!!  Unbelievable!!  One of my sisters asked if my body will keep shrinking the tumor or if the best result has already been achieved, and Dr. Rad Onc assured us that yes, my body will continue to shrink the tumor down, so the next scan will reveal just how small I can make that Pearl.  How low can I go?  This is my new healing challenge, after I get through the steroid-step-down and brain swelling challenges.   

After the Lloyd result had been shared, I asked about the brain swelling, because you can kind of see the swelling around Lloyd here but you can't really see any swelling around Pearl.  But I can still feel it!  So he pulled up some different images that show the swelling better than the first images.  It's still rather hard to see, so I tried to draw circles around the swelling.

Two frames of my brain that compare the swelling around Pearl (left) to the swelling around Lloyd (right).  It's really hard to see the swelling around Pearl, so I circled it in blue (none of the colors showed up very well).  To keep things even I circled the swelling around Lloyd, too, but of course it didn't really need it because the Lloyd image is a bit high-contrast (I had no control over this).  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).
When I saw how scant the swelling is around Pearl, I asked if it fluxuates or if I'm imagining things when I seem to experience a difference in brain swelling as my day progresses?  As in, as the amount of steroid decreases in my body between doses, does the brain swelling increase?  Because that's what I feel is happening.  He said that oh yes, that is certainly what's happening.  So the amount of brain swelling shown on the scan is the amount of morning brain swelling, which is a bit less than the amount of early evening brain swelling, right before I pop my 'roid.  Fascinating. 

I asked about evidence for necrosis, and he said that it's too early to tell that.  Huh.  I had thought that that was one of the purposes of today's scan.  So if it's too early to visualize necrosis, and it was supposedly too early to visualize shrinkage, what WAS the point of today's scan?  I must be confusing some aspect of what I thought I'd been told.  Well, regardless, today's scan and results ended up being QUITE exciting, didn't they, and I'll take it!    

And that was the end of the appointment.  He clearly was very pleased with this result, as was I.  He said he'll see me again in three months, when we'll do another brain MRI!  Huzzah!  

Then I proceeded to have a lovely midday with my sisters, who had both taken the day off from their jobs and motherhood to take me to these appointments (thank you!!).  They did my Leslie Sansone walk in my living room with me (which for them is like a warm-up to a real workout, lol), then we made gourmet nachos for lunch (tortilla chips, cheese, veggie taco meat, beans (for those that could--you know I snuck some since I didn't die the other day), salsa, avocado, greens).  A good time was had by all.  

I can't end this post without a quick shout out to the Medical Physicist who spent 12 hours planning my stereotactic radiosurgery (SRS) treatment plan to kill Lloyd.  He did an awesome job, methinks.  His treatment killed all of Lloyd so thoroughly that my body could get in there and rapidly start cleaning him up.  I am deeply grateful to both the Medical Physicist and Dr. Radiation Oncologist for their excellence.

15 comments:

  1. Oh My Gosh Heather - best news ever! I hoped the lovely Pearl can limbo; we'll see how low she can go. You are masking the world smile today!!

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  2. Best news ever! I love you.

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  3. Your mother texted me when I was at work, I had to quick shut my office door for the happy tears to flow!!! 😍 you have always beaten the odds, why would you stop now?! XOXO

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  4. Wow!!! Heather! Best news ever!! Angela and I are giddy happy for you right now. I'm so proud of you for being positive and brave, proud of your Llyod-eating immune cells, your family. Just so very happy for you!! Let the healing continue!!

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    1. Thank you Tim and Angela! "Giddy happy" is a lovely phrase--I felt the same way, I think, as I struggled to fall asleep that night. :) I miss you and your family soooo much!!

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    2. Giddy happy IS a fun phrase! You can use it any time. Maybe you can say "Golly, I'm giddy happy" :) We miss you too! You are doing well in your recovery. You've come so far already. I see more and more sunny blue skies coming your way!

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  5. This is to Lloyd & Pearl -

    Excerpt from Heather's Log of the Family Vacation to Yellowstone (August 11, 1994 - Day 9).

    The Skunk Song -

    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
    Remoooooooove it.'
    Well, I didn't take it out and the little skunk said
    'If you don't take it out you'll wish you were dead
    Take it out take it out take it out take it out
    Remooooooooove it.'
    I remoooooooooved it. Too late!


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