Thursday, November 26, 2015


This morning I see many Thanksgiving posts on Facebook.  Lots of "gratefuls" and "missing those no longer heres".  It gives me pause this morning.  

My mom has what is possibly terminal breast cancer.  We know for sure it is Stage 4, having reared its ugly little head after 3 years of clean PET scans, this time in the form of a brain tumor. It compromised, most likely permanently, the function of the left eye and the left side of the face in general.  The right eye is similarly affected, though not to the same degree.  That tumor is inoperable, though a large chunk was taken in the name of biopsy last month.

Am I grateful that my mom survived a difficult brain surgery?  That now in addition to the above she has cognitive and speech difficulties as a side affect of the surgery?  I don't know.  If she weren't so cheerful and good-natured most of the time, I would think we were making the wrong decision to keep pushing through with treatment.

We started stereotactic radiation two weeks ago.  It was supposed to be simple; five treatments, every other day.  We were counseled the radiation would temporarily increase inflammation and impairment to the adjacent nerves, ie a reversal of the gains we had made in speech and cognition post-surgery.  We were not prepared for her mouth and throat to become so swollen that she lost the ability to swallow, necessitating a return visit to the hospital to have a PEG tube installed, so we can literally pump fluids, nutrition and meds straight into her stomach.  

Even though it has been six days since the second radiation treatment, recovery of speech has been slow. She is super confused.  She gets lost in the bed.  She has more pain because of the PEG surgery. Her speech is super slurred and it's hard to not get frustrated on both sides.  She even tries to spell, but if I can't understand the letters, then it still doesn't work.  She asks to write it out, but that part of the brain doesn't quite seem to work right now either.  

And of course she still cannot swallow.  "I'm hungry, can I have some soup?"  "No Mom, you can't swallow, remember?  Look, I'm putting lunch right into your tummy, isn't that cool?"  Yes, it's cool, and while she is theoretically getting all of her nutrients and calories, it doesn't replace the smell, taste and sensation of real food.

Last night my mom asked me how long she had been in prison.  "Prison?  You mean the hospital?" "Maybe."  I couldn't help thinking that maybe she thinks she's in hell now, trapped in a body that won't cooperate.  When she's having bad moments, when there's nothing else I can do for pain or to make her feel better, or see the pain in my dad's eyes over the thought that we might be killing her faster than the cancer is with these medical interventions, I think I might be in hell, too.

There are no easy answers here.  We'll get the latest PET scan results back next Tuesday.  We plan to finish radiation next week.  As we get more answers, we'll make more decisions.

Today is Thanksgiving.  I'm thankful that state and federal laws allow me this leave time to care for my mom.  I'm thankful that my employer is a strict adherent of those laws.  I'm thankful for those coworkers that have donated leave time so I got at least one more full paycheck.  I'm thankful for all of the support, prayers and love being constantly sent our way by friends and family.  I'm thankful this time has allowed my dad and I to become closer again as we support each other in our care efforts.  And I'm thankful for those sweet moments with my mom, which reaffirm in these difficult days, at least today I'm doing the right thing.

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