Tuesday, December 11, 2018

Fuzzy caterpillar camp-out

Folks (mom) are frequently asking if I'm feeling better.  Better than what?  In the old days, before cancer, if I felt better I took that to mean that I was done feeling unwell. Now, it might simply mean that I feel a little bit less crummy now that I've had a nap, or sure maybe I feel better than yesterday, or thanks for the hug it lifted my spirits and I do feel a little bit better now that you mention it, but no I am certainly not yet feeling like my old self.  Perhaps I never will, and that would be okay, because I'm so grateful to be here and things could be so much worse.  I am happy to be somewhere on the healing continuum, and I am summoning all of the patience I have to keep progressing along toward "better".  May I arrive at "best" in due course! 

So, instead of trying to analyze if I'm feeling better or not, I've decided to share that perhaps I've stopped feeling worse.  Although I don't know what tomorrow will bring (does anyone?), it seems that I've had a couple of steady days at this level, with nothing dramatically more uncomfortable.  Weak, tired, nauseous, head-burny, head-pressury, scalp itchy, ears ringing, meh.  And maybe a little bit less grumpy?  Little bit less?  I saw Dr. Oncologist yesterday and she affirmed that I'm doing the right things.  I complained to her about how hard it is to "listen to my body" because I get some mixed messages--my quads want to be used, but my head wants me to stop moving.  She told me to cut myself some slack, and that walking and yoga are perfect for now.  I'll get back up to more strengthening exercises in due course.  I haven't gone in to work in over a week now (work is the most exhausting thing I try to do), and both docs nodded in support of that for now.  I'm only a week out from radiation--the non-Lloyd parts of my brain have lots of healing to do and that takes time and rest!  

When I saw Dr. Radiation Oncologist last week, I mildly complained to him about running out of ways to explain to curious people how my head feels.  He suggested that I have fun with it and create a fanciful story.  So here's what came to mind.  A family of wooly bear caterpillars is camping out in the basal ganglia region of my brain, roasting marshmallows over Lloyd's burning carcass.  The smoke and heat from the fire fills my brain.  Sometimes the fuzziness of the wooly bear family tickles a nerve and makes my forehead or pinkies tingle.  

Image result for fuzzy caterpillar

Dr. Oncologist recently attended the annual breast cancer conference in San Antonio (she goes every year), and she reported to me that we are absolutely on the right treatment path and that my situation is an area of active research because of the high number of patients who are in the same situation that I'm in (I didn't think to ask, but I presume she meant Her2 brain metastases).  She's hopeful for new treatment options in the near future.  Huzzah for being on the right path, and huzzah for new treatments!  

In the meantime, my job is to keep healing.  Next brain MRI is Jan 3; we'll see what's going on inside my head and decide what comes next after that.  The chemo options discussed previously (irinotecan, etc.) will be discussed again after we get further out from radiation.  It's too soon for the chemo options.  My brain needs time to heal!  

I still haven't shaved my head, but TONS of hair has fallen out.  I seem to have bald patches, so it's hard to decide what to do with the remaining hair.  Plus it's not done falling out yet.  BUT I've been slow to decide to shave it because I don't want to if it's not all going to fall out.  At this point I think it's becoming clear that it's all falling out.  Not that there's much left to cut, lol.  Pretty wispy!!  It's mostly just a mess to have long-ish hair falling out, rather than buzzed hair falling out.  I don't know what to do.  One day at a time!  I've been bald twice before; this is no big deal for my vanity.  However, hair is good insulation this time of year.  

The family is doing great.  The spouse and kids chose a beautiful Christmas tree.  It smells so nice!  

A few more from Puerto Rico!  

E sampling from the chocolate fountain at a Gelato shop (Chocolato)

Az reaching out for a cannonball at Castillo San Cristobal.

Spouse and A discussing something important (or possibly discussing our failure to have any quarters with which to turn on the telescope) in one of the WWII era turrets at Castillo San Cristobal. 

E with her cool shades walking through a hallway at Castillo San Cristobal.  


  1. I can't wait to give you a hug this weekend!

  2. When you feel crummy there's nothing worse than "how are you feeling? Thank you for always being a pillar of strength and calm. Love you, you're doing great.

    1. Thanks, Hol. I LOVE that you always tell me that I'm doing great!!!! It's the best!!!