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Horror of horrors! August 8, 2018

Posted by Judy in Musings.

I’m having brain radiation sometime this week, and I’m freaking out.  But I should back up a bit and share the results from the 3 scans I had last week.  The CT and bone scans were filled with good news.

  • My bones are in good shape and it appears they are healing.
  • Many of the lymph nodes are either smaller or no longer an issue.
  • The pleural effusion (liquid around my lungs) is very, very small and the pleural thickening (which was new after treatment 2 – Xeloda) is also considerably less.

So from this, it seems that the IV chemo did a good job of kicking the cancer back.  I don’t think it’s to the point of saying there is no disease, but the disease is very minimal, it would seem.   Our next treatment plan is to go with immunotherapy, which is the new up and coming treatment for some cancers.  It’s working quite well for lung cancers, but has not yet been approved by the FDA for breast cancer.  I’ll be taking an IV chemo called Keytruda, which is supposed to be a very kind treatment.  It’s not chemo, so no hairloss, no nausea/vomiting, etc.  The goal is to build up my immunity, not tear things down.  There is a chance that it could cause my body to attack normal organs, which would be bad.  But I think the benefits outweigh the risks.  Since it’s not FDA approved, the insurance company is most likely going to deny the request, at which point the doctor will go to the manufacturer and ask for the medication for me on a compassionate basis, and they will likely say yes.  So in a few weeks, I should be starting the plan.  Either it will work really well and I’ll hit the jackpot, or it won’t do anything at all, and we’ll have to go a different route.

The one thing the IV chemo regimen I just finished doesn’t do is pass into the brain.  This means that the brain gates were wide open for cancer to take hold, and it did.  I have two very small spots (3 mm and 5 mm) as well as one spot (also small) that may or may not be cancer.  The treatment I decided to go for is pinpoint radiation, which is one 45-ish minute session with several radiation beams that go directly to the 3 spots to get rid of them.  I’ll have another brain MRI in 2-3 months to make sure it worked and to make sure nothing  new has popped up.  Seems easy enough, right?  Read on!

Yesterday, I met with one of the radiation team members to get mapped for the treatment.  I walk in and he says, “So we are making a mask for you today?”  My heart stopped and I thought, “What? I’m getting an iron mask?!?!?!  This is not what I was expecting!”  Sadly, I was partially right.  The mask is not made out of iron, but it might as well be given that I can’t move at all.  The mask is made of some sort of plastic that is yellow and looks like a honeycomb flanked on either side by a strip with latches and screws that attach to a thing on the table.  So basically, the mask is screwed to the table so that I can’t move at all.  The mask is made up of two parts:  the part behind my head – this is no big deal  – and the part on my face.  (This is very similar to what they used, with the addition of cutouts  for my eyes and nose.)

When he first laid the hot plastic thing on my face (it’s hot so that it can be molded to my head/face, then it hardens as it cools), I thought “Having my lips covered like this isn’t going to work.”  Then he pushed a little guitar pick-looking thing into my mouth and told me to bite down on it.  That was better, at least I didn’t feel like someone had their hand over my mouth.  But after a few minutes, I realized that having my mouth open like that meant that saliva was pooling.  I could either just drool, or try to awkwardly swallow.  Go ahead, try it.  Lay on your back, put your finger in between your teeth and then try to swallow.  It’s very awkward and sort of made me feel like I was choking.  At the end, I realized that I could relax my lower jaw and I’d have a smidgen of room to move since he’d molded the mask to my non-relaxed jaw.  Honestly, though, that bit of room is just not much.  I mean, I get why my head needs to be perfectly still since they are aiming at something smaller than a grain of rice.  But, I’m hoping that they can knock me out for the procedure.  Lying still for 45 minutes with my head in a mask screwed onto the table . . . horror of horrors!!


1. Carla - August 8, 2018

Oh, man, yes screwed down to a table. That does sound like the horrors of horrors. I do hope they can knock you out for that.

2. Mary Slayton - August 8, 2018

I will double pray for you during all these procedures! Perla, you are my hero! You have courage. You have discipline. You have guts!! I’m beyond proud of that little girl I knew so long ago. Love you lots!

3. rlape85 - August 8, 2018

Sweetie, will keep you in prayer so the treatment goes well . May God be with you. Hopefully they will give you something to come you down.

4. Jen - August 8, 2018

Perla, I’m so glad to read all the good news! And I’ll pray that the brain scan results in good news, too. But oh, that mask does sound horrible! I can’t imagine anyone going through 45 minutes of that without anxiety meds. I’ll also pray that it will be far easier than it sounds.

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