Monday, November 14, 2016


Today I am pissed.

Stop reading now if you are not in the mood for completely irrational, emotional, and insane whining.  I have warned you.

Brian and I are once again in Houston - inconveniencing Kendall, my mom, my brother, and his wife.  Using up the money and flyer miles of friends and family.  Ignoring and once again not raising our children.  It's cool.

I am here to "prep" for radiation.  Awesome.  I went to the cancer dentist and had a contraption made for my mouth that will hold down my tongue and protect certain parts of my mouth during radiation.  It is horrifying - like the worst retainer known to man.  And my mouth is still massively swollen from surgery to the point that I cannot open it properly, I can't speak properly, and I eat out of a tube in my stomach rather than my mouth - for 4 freaking weeks now with no end in sight.

Anyway, I got a horrible mouth thing made then I got a head, neck, and shoulder cage made.  Yep.  That's right.  I don't actually know what it is called, but this is what it looks like.

They made one that fits me today and I will wear it everyday, 5 days a week, for 6 weeks starting Monday during my radiation treatments.  They literally strap and lock me to the table with it.  Fancy.  Oh, and I have to wear the mouth thing at the same time.  Fun.

I am tired of consent forms.

I cannot even count how many I have signed at this point.  Today, I signed the radiation ones.  You know, the ones that say I understand I may get mouth ulcers, skin blisters, permanent dry mouth, loss of the few remaining taste buds I have, etc etc etc.  The best part about radiation side effects as opposed to chemo or surgery ones is that they are long-term and/or permanent!  Jackpot!  I don't need to be able to swallow.  Not important for my life!

Oh, and I have to pay $300 for fluoride trays that I will have to use on my teeth every single day for the rest of my life if I don't want my teeth to rot out after radiation.  For the rest of my life.  

May I remind you that they already pulled 4 (4!!!) of my molars during surgery because my mouth was too small.  This has caused the other ones to get even more crowded (like that was possible), so maybe I want them to rot out and just save the $300 bucks.  No one gave me that choice.  Hmmm.  I already have to get a denture for the entire row of missing molars on my left side, why not just do them all while we're at it?

Oh, and do you want to hear my absolute favorite news of the day?

Apparently, I will be getting chemo along with my radiation.

Chemo.  CHEMO.  As in chemotherapy.  As in it put me in the hospital for a week.  As in I hate it.  As in I already rang the damn bell and was told this shit was over.

And all those radiation side effects?  They are more likely and more powerful when the radiation is paired with chemo.  Plus, we remember the fun chemo side effects don't we, class?

The hits just keep on coming!

And my plastic surgeon told me to take the bandage off my thigh skin graft site, to put some aquaphor (lotion) on it, and go about my day.  Cool.  I took the bandage off, screamed bloody murder, put on the aquaphor while my hands were shaking and I tried not to go into shock from the pain, and then stood there wondering what the hell I am supposed to do now with a bloody pulp of a thigh covered in Vaseline.  I specifically asked him if I cover it and he said no.  Hmm.  How does this work on planet Earth?  I ended up putting on a nightgown and tucking the end of it into my underwear to keep it from hitting the pulpy mess.  It goes very high on my thigh.  Like indecent.  At night I cover it so I don't have to buy new sheets and today I also covered it so that I don't have bloody Vaseline pulp jeans.  It may never heal since I am not following instructions, but when said instructions are stupid, I'm out.

And my arm is still wrapped.  It does seem to be getting better (I can dress it myself now so Brian doesn't have to), but I still get shooting pains up and down it when I make a fist or move my fingers or straighten it or lift it over my head.  So, you know, there's that.

My last appointment today was with a speech therapist.  She gave me two pages of swallow exercises I have to do everyday, 7 days a week, for 8 months.  Some of them are literally impossible for me to currently do since my tongue is hugely swollen still and I can't move my neck well due to surgery scars, swelling, and pain.  I ended up crying and snotting all over her office.  It was classy.  The day just got to me.  Random strangers in the elevator offered me hugs and words of support.  I am officially that person.  Ugh.

So, here I am.  I spent my day whining and wallowing.  I hate my life at this moment.  I am making everyone else's life worse and I feel like shit on top of steaming shit.  I know I am being self-indulgent, not helpful, and ridiculous.  But you know what?  I don't care.  At all.  

I'll say something nice some other day.  Today I am pissed.