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.
Sunday, November 1, 2015
10:42am Saturday morning. I'm walking down the hallway of the 6th floor inpatient rehab center. Singing a song about ants. Pushing my mother in a wheelchair.
"The ants go marching one by one, hurrah, hurrah. The ants go marching one by one, hurrah, hurrah." My mother chimes in on the hurrahs. We're walking around to the windows that overlook that small park. "The ants go marching one by one and the little one stops to suck his thumb (she giggles), and they all go marching down, to the ground, where it does not rain, boom-boom-boom." More singing along with the "booms".
We keep walking, well, I keep walking, and in between more verses in which I try desperately to remember what the littlest ant is doing in the fourth line, we take breaks to look out hospital windows and at the paintings lining the hallways.
Hey mom, what's in that painting?
I don't know.
Are these red flowers poppies? I point.
At the farthest point in our stroll is a large 6-story curved window. The view is impressive. She peers down at a couple walking on the street below. "They looks so small from here, like ants," I observe. She looks around for more ant-people.
On the morning of October 15, my mother underwent a left craniotomy for a brain tumor biopsy. The scans showed a large cherry-tomato sized tumor, growing bilaterally from the base of the brain, damaging the nerve responsible for facial sensation, including the inside of the mouth, and ocular function, which controls eye and eyelid movement. What the tumor was impeding in functionality was also producing huge amounts of nerve pain. Entwining itself around crucial nerves, the tumor itself was inoperable, but it was deemed important enough to possible treatment outcomes to risk surgery and biopsy the tumor.
The surgery was complicated by the location of the tumor. Imagine a space nearly dead center in your skull, surrounded by crucial parts of the brain. Yep, that's where it was. The language center of the brain was shifted over to remove a large chunk of tumor. Now the brain has to recover from the trauma of being poked and moved around. So here we are at rehab.
My mother requires 24/7 care. Medically she is fairly stable, but she cannot walk without assistance and is very weak. Short term memory is nil. Certain aspects of speech and cognition are not available. The nerve damage affecting the use of her eyes has not gone away, so she has very limited vision.
Through all of this she is mostly cheerful. Her world revolves around meal times, therapy and needing to pee, which is announced suddenly and urgently. She often uses a sing-song, small voice, and sometimes the best way to get her to vocalize is to sing songs. Hence singing about ants as we walked.
Her pleasures are simple. A sympathy card is carefully read and admired. She reads every part, even the designer mark on the back and the postmark on the envelope. A new puzzle with flowers make her eyes big and wide. She oohs and ahhs over the colors. Tell her she has a visitor and she lights up, full of smiles. She may not talk much, but she's always following the conversation, nodding here and there. The essence of my mother is still there with her generous nature and usually good humor.
In rehab she gets three hours of therapy a day. It includes use of the walker, strengthening, dexterity and balance. We get training too, how to help her move safely, use equipment, etc. One session is dedicated to speech therapy, which is sometimes the most frustrating session for her.
Losing a piece of my mother in this way was not something I expected going into the surgery. The biopsy results confirmed breast cancer metastasis. We can't consult with the medical or radiation oncologists until she has progressed further. I don't know how I'm going to balance working with caring for my mom. Even doing shifts with my dad, this is a full time job.
And the neuralgia pain seems to be coming back. Over the past three days, she has gone from no pain, an unexpected blessing of the biopsy, to needing pain intervention. How this will affect her rehab and brain recover is too early to tell. We're repeatedly told by staff that stimulation and activity are needed to improve function, but how to balance stimulation, rest AND pain is another unknown.
Today is another day. We've briefly ventured outside with the wheelchair to look at flowers. Now we are watching tv (her request). It's fun to watch her reactions to the commercials. The Colonel was telling us about his chicken, that its finger lickin' good. She smiles and nods, "Yep".