Tuesday, April 10, 2018

Alternative Hypotheses

Yesterday, the only hypothesis as to why my tumor (Lloyd/Pearl; henceforth called Lloyd in this post because he does not get to be called Pearl when he's misbehaving) looked bigger than it did on the February scan was that Lloyd was growing.  This was alarming, and more than a little bit disappointing.  Today, in happy contrast, we were presented with several alternative hypotheses.

First, let's explore what we learned in regards to the possibility that the tumor is growing.  My spouse, my dad, and I met with Dr. Neurosurgeon (and his resident) at the University.  They were very knowledgeable and helpful!  After interviewing me and gaining a complete understanding of the situation, Dr. Neurosurgeon's preferred course of action was to do another brain MRI in 7 weeks.  He said that no urgent action is needed because I'm not experiencing adverse symptoms (besides the headaches--truly adverse symptoms would be seizures, or trouble swallowing, or loss of small-motor control).  If in 7 weeks the scan clearly reveals that Lloyd is growing, he said that yes he'll be able to surgically remove it for me, and that yes I would still be "me" afterwards.  Huzzah!  He even said that he's seen hundreds of cases like this, so it's really no problem for him.  That was reassuring! 

OR MAYBE...

Dr. Neurosurgeon also said that it's possible that Lloyd is not actually bigger, but that due to my head being positioned in the MRI tube slightly differently each time, perhaps the imaging revealed slightly different slices of Lloyd, making the measurements appear to be different each time.  This is perhaps not the most favored hypothesis, but it's one of them.

OR MAYBE...

Dr. Neurosurgeon wanted to get the opinion of one of his colleagues down in Radiation Oncology.  So, we sat in the exam room FOREVER, getting quite HANGRY, as his nurse tried to finagle a same-day appointment for us.  Success!  And I'm extremely grateful, because this was the highlight of the past 24 hours!  After a quick bite in the cafeteria, we walked to the far end of the hospital to the Radiation Oncology department.

We first met with Dr. Resident Radiation Oncologist, and she was phenomenal.  She had terrific bedside manners and was very knowledgeable.  She and I quickly put together the relationship between my scan dates and my steroid doses.  That is, my February let's-celebrate-Lloyd's-death scan result was correlated to a steroid dose of either 4 or 8 mgs (I haven't figured it out precisely, but it's certainly one of these), and my April-holy-shit-Lloyd-is-growing scan result was correlated to a steroid dose of 1 mg every other day.  When Dr. Radiation Oncologist came in, he said that the image of Lloyd in yesterday's scan doesn't look like a growing tumor; it looks like a dying tumor that is attracting the attention of the immune system.  He said that growing tumors have a spottiness to them, but Lloyd currently looks like a cotton ball, and this is consistent with tumor necrosis (death).  So, he agrees with Dr. Neurosurgeon's course of action, but in the meantime he'd like for me to further increase my steroid dose to 2 mgs twice per day to get that pesky immune system under control in my brain.  Left unchecked, it can damage my healthy brain tissue while it is working on Lloyd.  In short, the result of yesterday's scan revealing a larger Lloyd could be a side-effect of stepping down my steroid dose to be a bit too LOW.  The hypothesis is that the awesome scan result of February was made possible by the higher dose of steroids controlling the immune response in the brain. The plan is to continue on a slightly higher steroid dose (no more step-down for now) and hope that this decreases the swelling and the necrosis, and hopefully the next scan will look as promising as the February scan.  And this, my friends, is the prevailing hypothesis at this time.

REGARDLESS, I have 7 weeks to continue healing, pop the steroids, and not worry about a thing because there's nothing I can do.  Many available options ahead, and we'll have a clearer picture of the way forward in 7 weeks.  For now: just keep swimming, just keep swimming, just keep swimming...

I am EXHAUSTED.  It feels like a final exam day in undergraduate--the stress, the performance, the release.  Time to do some yoga and go to bed.  Thank you for your love and support, both near and far!  I appreciate you!

11 comments:

  1. You're amazing in every way and of course so completely exhausted. Thank you for taking the time to update your ever-loving and supportive fan base. Love you soooo much. Xxxxxxxooooooo

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  2. what day indeed!! love you love you love you!!

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  3. I feel good about today. Thank goodness it's all about me ;). From the endless googling I've done, this is much more common than what I thought yesterday. You continue to be a walking miracle, nothing short of the one you were some 30 years ago. Love ya hka.

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  4. Well I would dare to say that this is absolutely fantastic news! What a whirlwind the last couple of days have been for you. Get some much-needed rest and know that we all love you and will do anything at the drop of a hat for you. Love you sis!

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  5. Sounds like some semi-good news!? Cheering you on and sending lots of good vibes! If you need to relax, I have plenty of papers I can send your way to make you fall asleep LOL!!!

    - Nick L

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  6. Yay!
    Wahoo!
    Oh yeah!
    You Betcha!

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  7. My heart is filled with happiness to hear these hypotheses and outcomes from your discussions! I was snuggling on the couch in the wedding blanket you made for us (10 years ago!) and thinking of you. Thanks for sharing the news on your blog. Sending love to you and your family!

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  8. This is fantastic news! Thanks for posting!

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  9. OMG what great news. So happy for you and your family. Love you all.

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  10. I like your Tuesday much better than your Monday, and love your smiling face every day of the week. Let us be your strength Heather Kae, you are amazing my dear.

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