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Mask Redux October 12, 2018

Posted by Judy in Musings.

Yep, you read that right, I’ll be getting another creepy radiation mask.  I had a follow-up brain MRI yesterday to check to see that the previous radiation had done it’s job.  It had.  Good news.  The MRI also showed that I have “inumerable” new lesions through the brain.  Bad news.  The last things the MRI showed was that there is only a very minimal amount of brain swelling and that the brain lesions are slow-growing.  Good news.

Enter the new mask.  Tomorrow I go in to be fitted for the new mask.  The doctor says this is a different type so it should not be as tight.  Even so, I’m going to have a word with the guy making the mask.  Then sometime next week, I will start whole brain radiation, which is different from the pinpoint stereotactic radiation from last time.  His preferred plan would be 15 daily doses using the hippocampus sparing technology.  The hippocampus is deep in the brain and is where memory is stored.  He really wants to avoid radiating that for several reasons:  1) I’m young, 2) breast cancer patients tend to do well with this treatment.  The problem is that the trial that showed that this therapy actually did decrease significantly the memory issues is a stage 2 trial.  This means that it was a small number of patients, not-randomized, and without a control group.  Apparently, treatment changing decisions are not based on stage 2 trials, rather, they are based on stage 3 trials.  Practically speaking, the insurance companies sometimes don’t want to cover the treatment because it’s not based on a stage 3 trial.  But the radiation oncologist said he is prepared to fight and appeal and appeal to get it approved.  Does this treatment make a difference in terms of efficacy of the treatment?  No.  But saving my memory is important enough to him that he’ll fight.  I liked seeing that gritty side of him!  The other thing he’ll be fighting for is the 15 treatments rather than the 10.  Doing 15 treatments means you get more radiation overall, but then each dose is smaller, which reduces the chances of side effects.  But, it’s more treatments, hence more money.  So, he’s got his fighting gloves on.

Sometime next week I’ll get started on the treatments.  Once they are done, we wait another 2 months to get another MRI to see how many have shrunk or disappeared.  If all is well, the doc can do several boost doses.

I’m rather numb right now.  I spent a good portion of the morning just sobbing and talking to hubs.  We had some good conversations, and talked about the hard stuff:  What do I want my funeral to be like?  Do I want to make more videos for the kids?  What do I really enjoy that I should be seizing and doing now?  So we’d talk, and then I’d be okay, and then I’d start sniffling and sobbing again.  Brain metasteses scare me.  I can handle the new liver mets, and I could handle lung mets.  But the brain just scares me silly.  I’ll be spending lots of time on my knees, because for sure for positive, I can’t do this part of this journey with Him walking along and carrying me.


1. Jen - October 12, 2018

I’m crying and intensely praying with you tonight, Perla. I’m so sorry. Most of all, I pray that you will feel God’s presence like never before, and that you feel peace as He carries you through another difficult part of the journey.

2. Mary Slayton - October 12, 2018

It just hurts to read about all this medical stuff you have had to endure. I admire your spirit of picking yourself up and going on. I’m praying for you and Hubs because this is very tough for him too. I can’t imagine what both of you and your children have endured the last few years. I know that the Lord allows all of this for a reason and that he hurts with each of you and His judgement is correct but I want to shout, “No! There has to be another way!” You and all who love you must have felt this many, many times but it remains as it is. All I can do to encourage you and yours Perla, is say again, “If I could take this on myself, I would do it with no hesitation for you and your parents, husband, and children. I love you all.” May God answer all of our prayers for health and healing for you. You are our hero!

Susan White Stout - October 12, 2018

Perla, What Mary so eloquently said goes for me too. I pray each day for healing for you.

3. Jessica Adams - October 12, 2018

Praying alongside you. You are victorious ands surrounded by people who are on your side!

4. Kandice Dickinson - October 12, 2018

I grasp for some comforting or encouraging Words – but, they are ALL too ridiculously inadequate and imprecise – – – My prayers are full of you. My heart is hurting with you. My admiration is overflowing for you – – – And I love you more than I can express, dearest-heart Perla – – – xxoxo Kandice

5. Martha Milas - October 12, 2018

A big hug is wrapped in this message. I will continue to pray and am willing to listen anytime.

6. Elmer Arthur Robertson - October 12, 2018

So, so sorry. Will continue praying and hoping.

7. Felicia Jiardina - October 14, 2018

You have my support and prayers. My family continues to pray for you and yours. Much love to you Perla.

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