Routines and complaints

I started this post on Tuesday, when I was in a particularly cranky mood.  But I didn't hit "post" and some things have improved since then, so that's good.  :)  Updates included in italics.

I haven't written much because there hasn't been a lot to write about!  My life has fallen into a pretty nice routine.  I work full-time.  I do fun stuff many evenings and weekends.  I sleep--hard!

I did a spot check and I'm up to 112 appointments related to the breast cancer.  Yikes.  I'm also essentially done with the clinical trial.  I will have 4 boosters 6 months apart, and the big test is on February 3rd.  That's when they do the DTH to see if my body has developed an immune response to the vaccinations I've been getting (if they're real vaccines or the control).  If my immunology skills/memory is correct, I'm hoping for a response (red swelling) of 10 cm or greater.  

I've had a lot of people ask me how I'm feeling, and it's kind of a strange answer.  It's pretty obvious that the acute part of my treatment is over.  Even though I'm still doing Herceptin every 3 weeks, other than the vision issues the first week or so, it doesn't impact my life that much.  I'm taking the Tamoxifen and (knock wood loudly) it doesn't affect me much either.  However, I've crossed over into the land of long-term side effects.  There are numerous articles on the internet about such side effects (here's one), but they certainly are about as varied as are the short-term side effects of cancer treatments.  Some that have been particularly annoying follow.

*I developed TMJ problems last year. My dentist thinks it's at least partially due to my being anesthetized (and intubated) so long.  I've ground my teeth most of my life, but I didn't have this kind of jaw pain until last spring.  I had gotten to the point where I couldn't open my mouth wide enough to eat a sandwich or even a banana.  So I have a TMJ splint now.  I think it's too early to know whether it's fixing the TMJ, but it certainly has given me a lot of other annoyances.  Much like having braces, it makes my teeth ache and it has cut up my tongue and cheeks.  Besides that, I have this wonderful lisp since I have a big chunk of plastic in my mouth all the time.  Yes, it's an all-the-time splint and not just a night one.  It's hard to eat with it in.  I'm hopeful that it'll help me lose weight at least.  :) (Update: at my 10 day check, my dentist trimmed back the splint and it's a lot less annoying now.  I can tell there's significantly less pain in my jaw and I'm able to open it wider.  My lisp is lessened--though not gone--and I can eat a lot more foods with it in.)

*The radiation oncologist said I could continue to see "tissue changes" for several months after radiation was done.  The plastic surgeon said the same, which is why I won't get my permanent breasts until May or so.  I didn't believe them.  But about a month ago, my right side got really tight, my range of motion decreased, and I felt kind of bruised on my right side ribcage.  It's gotten gradually worse and my right arm is numb a lot of the time.  I've got a call in to the OT to have her measure me.  I hate to even say the dreaded word, but I fear it might be lymphedema.   Hoping it's just those "tissue changes."  (Update: I have an appointment with Audrey the OT on Monday morning.  She will measure me for lymphedema, and work on some lymphatic drainage and stretching.)

*I am still experiencing peripheral neuropathy, which is decidedly worse in the cold.  While the rest of my body is hot-flashing, my feet are always freezing.  And numb.  (Update: issues continue, but the temps are starting to climb back up and I'm hoping to get more walking and/or running in, in hopes that I can decrease the neuropathy that way.  I also went to yoga--once--and am trying to get myself to do that more regularly.  If anyone wants to do the simplest yoga with me on Wednesday nights at 7:30 at CORE El Centro, let me know.  My doctor said having an exercise buddy makes it tougher to back out!)

*I'm tired. I kept telling myself it was because of the chemo or the radiation or the fact that I was working two jobs or working more-than-fulltime or taking care of family.  But here I am, working one plain, ordinary 40 hour a week job.  No more chemo or radiation.  My mom's moved and the kids are pretty self-sufficient.  And I'm still tired.  Really, really, really tired.  Not chemo-so-tired-I-might-cry, but tired.  (See above about yoga--the idea of heading out into the cold at 7:30 when I'm so tired is NOT appealing.)

*Chemo brain is real.  And it's scary.  I've always had a fabulous memory for people, places, recipes, you-name-it.  And I can't remember entire conversations now.  Names?  Not a chance.  I am writing notes to myself everywhere, and sometimes I read those notes and if they weren't in my handwriting, I'd swear I'd never heard what they say.  It's embarrassing.  And it's frustrating.  The one thing I do promise myself is that I will not be upset if someone reminds me of something that I have said or done (or promised to do) and have forgotten.  So if you're reading this and I've forgotten something related to you, please let me know.  It's frustrating and embarrassing, but would be much worse if I weren't reminded.


OK, with all that complaining out of the way, I have to say that I'm still happier than I was my last year in Grad School.  :)

I've been enjoying what wonderful big people my kids have become.  Having Cara home this month has been great and I'll miss her so much when she heads back to the Twin Cities next week.

Cara & I working at Starbucks while Mira attends Girls Who Code

Travis has had a very busy month with finishing the semester, taking finals, writing college application essays, working at Culver's, and practicing for the HS musical (Grease).  He also earned an "A" in his very college course (3rd Semester Calculus).  

Mira is a completely delightful teenager (so far).  She seems to be not-hating the rest of her family as much as of late, and in addition to all her school activities, she's continuing with Girls Who Code at Marquette University and just started taking voice lessons.  And she's selling Girl Scout cookies, too, if anyone doesn't have another source.

All three kids have been great about playing games with Greg and I and we love learning more about them through that outlet.  I don't think I've laughed as much in this last month as I did the entire year before!  December and January have been a wonderful gift.

As I was cleaning out some clutter in my room, I came across the journal that my friend Magda gave me after my surgery.  I used the paper journal to write down things that I didn't really see the need to blog about.  It was the rawer version of my recovery.  And in reading it over, I can see how far I really have come in this last year.  It's easy to think that the acute part of my recovery was easier when it's behind me and the chronic stuff is here now, but reading my journal reminds me just how much easier the "now" is.  I'm glad I have that reminder (especially with how crappy my chemo-brain memory is!  LOL).