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Molly's Journey

A place for communication, a place for love, a place to help.

Latest journal entry

Cheers to continued improvement!

I'm so happy to report that I am continuing to get motor function back! I am walking without assistive devices! Stairs are still difficult but I can manage. I have this residual "toe drop" which is slightly annoying because it's a trip hazard but we are working on strengthening the right muscles. My handwriting is mostly back, it looks a little different than before, the brain is a strange and mysterious thing.  I'm just happy to be able to walk, talk, sit, stand, move around, and get out of the house a bit!

Radiation finished Thursday the 19th with that single high-dose treatment to the third tumor site. Now we give it 10-12 weeks to work its radiation magic.  The docs are fairly confident that we are going to get quite good results from this radiation. Praying their instincts are correct! The department gave me the radiation mask that I had to wear for treatments. My consolation prize lol.  You have to see this thing to believe it.  Covers your face in a mesh-type fabric that hardens to your shape and locks to the table to keep you immobile-  think Iron Maiden.  Needed a little modern chemical assistance to wear that for the treatments which lasted 20-45 minutes!  NOT FUN!  Generally radiation would wait 10-12 weeks to scan the brain again for changes, but Dr. Lao does not want to wait that long, he scheduled me for another MRI in 6 weeks.  He does not want any new growth sneaking up on us!  Love him.

Also my suspicions were correct about holding infusion one more time. I was on the schedule for infusion on April 18 but my steroid levels were too high.  Since the radiation is now done, Dr. Lao put me on an aggressive taper-down schedule of the steroids with the goal of restarting immunotherapy infusion on May 2,  I'm very happy to get off the steroids! I have that bloated moon face that is generally associated with the steroids, and I want it gone! Although it smooths out all my wrinkles so that's at least an upside for now (like I said, little wins!).

So that's where I'm at right now.  Radiation done, but I was informed the side effects may develop as the weeks go by- fatigue mostly, and possibly some increased swelling before reduction. Praying I don't have swelling to the extent that I "go neuro" again. I'll be starting more PT shortly, for walking, balance, coordination, strength, and elimination of that toe drop. Immunotherapy restarting May 2.  But overall I'm in a fairly good place at the moment!  We move the twins home from college next week, and I will then have all my kids under one roof again.  I'M SO EXCITED!  

Thank you for your love, I have such an amazing support system and I am so humbled by that.  I love all of you deeply and fiercely. A good friend told me that when my father became ill, he said that it made him a better man.  I understand that sentiment now.  I am taking all the life lessons that you all have shown me, and using them to better myself to serve my friends and family when you need me.  Because I love you!

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