My hair is on the frontlines again

I have previously written about how my hair is the first part of me to know that I have cancer.  Well, sounds like I'll be losing my hair again this time, and it sounds like it might come back or it might not.  Previously irradiated parts of my body have not regrown hair (my armpit was collateral damage in chest-wall radiation--it's half hairless, which is not a bad thing lol), so this might be interesting, but certainly something I can work with.

So, whole brain radiation.  It'll be once per day for 2 weeks, and it could start as soon as Monday but we don't know for sure yet.  Depends on how long it takes the dosimetrist and physicist and radiation oncologist to make the plan, and they'll take their time in order to come up with a plan that is the most protective of the precious parts of my brain that are most in danger by this procedure, namely the hippocampus.  Plus, next week contains a holiday, so there's something tidy about starting the following week.  I'm not in any rush.

The reason for whole-brain radiation and not stereotactic radiosurgery (SRS) again is that SRS is a whopping dose of radiation, and the risk of causing terrible brain damage (high risk of necrosis and stroke) in the brain adjacent to Lloyd is very high if we were to try SRS again.  We know this from patients who have gone before me; thank you brave patients.  Whole-brain radiation is a lower dose of radiation over a much greater area and will hopefully kill off Lloyd's growth for awhile.  Probably not forever, guys.  That's the part of today's consultation that surprised me.  I guess I had been naively thinking that the SRS treatment could and would kill Lloyd forever, and then again that whole-brain treatment could and would kill Lloyd anew, again forever.  I mean, I have no expectation that I'll live forever, but I was clinging to the hope that Lloyd could be controlled and then I'd just be waiting for the next cancer, like I'd been living between the breast cancers.  I suppose in a way that's what this last year has been.  But no, the chance of Lloyd being killed for good by whole-brain radiation is only like 15-30% (the range is because I don't remember what the doc said, and I didn't write it down, but it was something like this.  Less than 40%).  The success rate of SRS was supposed to be 95%, which should have been phenomenal odds...but here I am, with an undead brain tumor that'll kill me in the next 6 months if left untreated, but will still probably kill me in the somewhat near future even if we treat it now in this way.  Ugh.  Time to put that information out of mind!  I've never been a fan of survival statistics, and need to remind myself that I've already done a great job of surviving.

I already told you about the hair loss, but what are the more serious risks of whole-brain radiation?  Well, there is a 40% chance of permanent short term memory loss.  Dr. Radiation Oncologist said that it's not like alzheimers, but it is a nuisance, and it takes awhile for patients to learn to live with it.  Everyone devises their own tricks.  He said that navigation can also become an issue.  He assured me that I'll still be able to work, and that I'll still be able to learn and process things, I just might need to employ some new tricks to get items into longer-term memory storage.  I might need to rely heavily on lists and note taking, for example.  Heck, I already do that.  But in all seriousness, this is when things started to sound a little bit scary to me!  So, thanks in advance for your patience and assistance if this happens to me!!!  Also, thank goodness for smartphones.  It seems that that could make short-term memory loss more bearable, as a helpful tool to make all sorts of lists all the time.  Also, Alexa:  "Hey Alexa, in 20 seconds remind me that the reason I went to the kitchen was to make some tea."  Ha!  Funny not funny.

Bright point #1:  there's a drug that I can take, memantine, which is an alzheimers drug that has been shown to decrease the chance of short-term memory loss in patients like me.  So we're gonna try to get our hands on that little gem.

Bright point #2:  I don't have to increase my steroid dose!  We're going to try to maintain the dose I'm on during the whole-brain radiation and see how I do.  Huzzah!!  I was fully expecting to have to step back up to 12 mgs, if not more (they started me at 24 mgs in January!!).  I'm currently at 2 mgs at breakfast and 1.5 mgs at dinner.  Go me!!!

Bright point #3:  I have to have a new mask made for my whole-brain treatment, and it won't be as tight as the previous mask.  ALSO, it'll prevent me from needing face tattoos (for lining up the treatment the same every time--have have three tiny tattoos from the chest wall radiation, and it's nice that won't need head or face tattoos).  Huzzah!  Mask making will happen tomorrow.

Bright point #4:  The infusions mentioned in my previous post are still on the table, but they won't start until after the radiation treatments.  And I won't know more about that until Monday's appointment.  Huzzah!

Bright point #5:  After my bone scan today, I took the elevator up to the external relations department to learn about how to make a donation to my medical center, as the Allen family pledged to do as a result of the Carnation Nation Appreciation party.  I found out that it's super easy, that we can direct the money to a fund that is designed for patients who need monetary assistance to manage their care (such as gas money, etc.), and that I can give our donation in honor of members of my "care team".  So we can donate in honor of Dr. Oncologist, Dr. Radiation Oncologist, and the nursing teams and support staff, etc., and the Foundation will host a scheduled surprise ceremony for them that my family and I will be invited to attend.  I was very excited by the fact that the donation can be in honor of the people who have kept me alive this long!  This seems like a terrific way to honor them!!  Thank YOU, Carnation Nation, for making this honor possible!   

Bright point #6:  We were in Puerto Rico last weekend!  And it was the BEST!!!  I'll have to post photos some other time because the blog doesn't seem to be accessing my Google albums right now--technology fail.

Bright point #7:  I'm not sure if these folks or their efforts want to be called out on the blog, but you GUYS.  While we were in Puerto Rico, some Family Elves broke into my house, cleaned it, painted two rooms that Ian and I were just barely starting the plan for painting, rearranged the necessary furniture, and did some light redecorating (i.e., new bedspread to match the paint job).  The rooms were the master bedroom and my 9-year-old's (E's) bedroom.  Our flight got home late Monday night, and we walked into BLISS.  It was like an episode of something from HGTV!  The elves even had placed fresh flowers on the dining room table, and breakfast foods in the fridge (we had depleted the groceries before our trip).  AND mulched the leaves in the yard.  AND washed and folded the laundry.  I'm sure I'm forgetting something, but it was seriously unbelievable, especially now considering the somewhat stressful week we're being thrown into.  It was hard to get E to settle down and go to bed, she was soooo excited about her new digs!  THANK YOU, family elves!  You sure do make living with a brain tumor possible, and you make life WORTH LIVING.  I am the luckiest girl!!! 

Bright point #7:  I've found some terrific inspiration from my old self today.  Like here.  I'm grateful to myself for maintaining this blog for so long!  Huzzah!

I found this quotation elsewhere on my blog, when I was looking for something else (I've forgotten what I was looking for, and treatment hasn't even started yet, lol).  Seems like a good day to play it again:

"Why couldn't they just stop complaining so much, just let go and see how good they actually had it?  Everyone seemed to be waiting for something to happen that would allow them to move forward, waiting for some shadowy future moment to begin their lives in earnest." --Lucy Grealy, Autobiography of a Face

I need to make sure I'm not waiting to feel better, or for Lloyd to be good and dead, because perhaps those things won't happen.  I don't think I'm waiting, but this is a good reminder on a day that I have allowed to be a crummy day.  :)