Post 1 of 2. "I wasn't prepared for this."
When people find out that it was my mom's behavior and not any prior medical findings that brought the tumors to our attention, they are often surprised-- and even more so when they hear of the size, as it should have caused more obvious physical symptoms: headaches, impaired vision, dizziness, weakness on the left side...
My mom, being extremely predictable, made many little changes very obvious.
What started as typos every time she sent a text message or made a Facebook comment transitioned into her forgetting conversations we had. This was coupled with other forgetful acts like leaving lights on throughout the house, losing track of time, misplacing things, and lastly, driving and moving incredibly slow without realizing it.
These were all things that she would never have done before, but could be blamed on one thing or another: an outdated phone, aging, sleep deprivation (as she battled sleep apnea), the mind slowing down a little as it sometimes does when someone retires, the potential that the chemo from 3 years ago had caused some long-term mental deficit... God knows my husband (arguably her biggest fan) tried to blame it on all of the above, not willing to admit that something could be truly wrong with his trusted ally.
We addressed the sleep apnea by working to get her tested, diagnosed, and treated. I was so relieved by the diagnosis-- it all made sense; she wasn't sleeping so of course she was so tired and the rest checked out. Chuck was right, there was a simple explanation and nothing to fear. We thought that we were on track and after many weeks of trial and error, she was able to sleep soundly at times.
The fact that her CPAP machine didn't give her the best rest every single night meant that her fatigue stuck around for quite some time and so did an excuse for it.
As this unfolded, so did several exciting months that in large part took our focus off of the case. I was nearing the end of my pregnancy and we couldn't have been more thrilled. All of us.
However, it was those very last weeks before William arrived that brought all of our fears to a head. My mom and I were spending many evenings together as I prepared for natural birth, hoping that our "exercising" would induce labor and make birth more tolerable. We would go for walks in stores and (as usual) we spent more time visiting than moving. We always spent time on weekends together but these weeknight visits awarded me a unique opportunity to evaluate her on a day to day basis.
I'm so thankful for those days for a million reasons: the conversations we had, the daydreaming and list-making for all that we planned to do with the baby, our typical heartfelt discussions... and, as it relates to this story, the ability to see that something was very off and very scary.
Mom's actions were becoming almost childlike at times-- like someone who is innocently curious, situationally unaware, moving slowly, forgetful, day-dreaming, sometimes lost... very unlike the Grace I know. It scared me so badly that after one particular outing I decided that I would try to distract her from going anywhere without Dad or myself (fearing for her safety) and I spent the remainder of the night crying to Chuck as we both searched the Internet for another explanation. We decided that it was either silent strokes or dementia (hoping for the former, as that could probably be controlled) and either way, we needed a Dr on it now.
My dad, who was all too aware and incredibly fearful, told me that she didn't fit the bill for strokes. He had gone with her to every appointment for the last three years, from the cancer diagnosis to chemo to sleep apnea, her follow ups with the Oncologist, the Dr for her back pain... he knew everything there was to know about her health and swore to me that she didn't have the underlying problems that would cause a stroke. Unfortunately he was right.
Through all of this she was acutely aware of the fatigue but not so much of the other "real signs". For the most part she seemed blissfully unaware and happy.
This is part of the reason why we all battled with guilt, sadness and regret about the initial surgery. If I wasn't completely certain that she had no other choice I would be even more upset by it.
Sitting in the car in my driveway I asked her to get her brain scanned. I asked if she also felt a bit foggy and acknowledging the problem she said, "ya think!" I was relieved to know that she was at least aware and that she would get it done.
She was called back to her Dr's office on the same day she took the scan to review the devastating findings. He made an immediate call to her Oncologist because the scan revealed two massive tumors: one that was 3cm and one that was 6cm. My cousin helped us get in with a Neurosurgeon two days later and he agreed to operate but warned us that we needed to do it immediately as she was running out of time. By his estimates we didn't have more than three weeks to wait so he scheduled the surgery for two days later.
To understand why this news was so surprising you need to know that for the last three years she has been in remission. She met with her Oncologist regularly, did the appropriate blood work and scans-- everything was always clear. Always. In all of this though, her brain was never scanned, just the neck down. I later found out that lung cancer is known for metastasizing in this way and my lack of research on the front end also led to feelings of regret and guilt.
Looking back, I don't think I was fully aware of reality. There was a chance (though incredibly slim) that these tumors were unrelated to her previous cancer and I was delusional with confidence that nothing bad would happen to her. It couldn't. My closest friend, my favorite person had no choice but to be just fine so that we could get back to our list of things we planned to do with the baby. In a weird way I felt somewhat relieved by the news-- she wasn't changing, didn't have dementia, and there was a completely logical excuse for the behavior. I guess I felt the need to protect her integrity and something outside of her control felt adequate, especially once we found out that she shouldn't have been able to do nearly what she had been.
My brother (who is currently living in California) came in for her surgery and thank God he did. I will never forget the moment that they wheeled her hospital bed out of the room to surgery because as they made the first steps toward the door my brother was there watching and gave her a nod and smile like "It's time. Here goes nothing. You've got this." And the wave of relief that washed over her in that acknowledging glance was one that only he could provide, one that she needed, one that still chokes me up and one that I will never forget.
The surgery went well but when she woke up she was shocked to realize that her left side was 'asleep'. She couldn't move the left side of her mouth, arm, or leg.
Imagine her mindset at this point: less than a week after finding out the shocking news that there are tumors on her brain (after thinking she was in remission for the last three years), she wakes from a rushed surgery to a body that isn't working properly with the realization that everything has changed and that she isn't going home for a while.
As anyone in her case would be, she was tired, scared, and disappointed. She said "Can you believe this? I never imagined this. I wasn't prepared for this. I don't know when I'll get to hold William again."
It was in the hospital room in Lafayette that my mom's eyes watered. Only there, just once, never again, not since, even now.
My dad was entirely rocked. He wasn't sleeping and was incredibly nervous and upset. For that entire week he refused to leave her side unless someone else was there-- not even to walk directly across the hallway to grab a cup of coffee. He was dissatisfied with her care and completely devastated to see her like this. He was grabbing at straws to regain any control or composure and there was none to be found. In every way he had completely departed from the centered, peaceful soul that he has come to be.
The 'sleepiness' of her left side, combined with the weakened state she had gotten into the last weeks before her surgery, meant that we were not equipped to take her home. She needed in-patient rehab and we wanted the best we could get.
At first I didn't understand the magnitude of the handicap because in theory you could just use the right side to balance and right now if you stand up and attempt to let one side of your body hang you'll find that you can indeed balance. But that's because you still have muscle control on the side you're letting loose (even if you aren't trying to), and it's when you have no control of those muscles that the entire side becomes dead weight and will throw you off balance.
It was extremely hard to accept but we were hopeful about her potential, so onto TIRR in Houston they went. Dad made sure that he could stay with her, my Aunt Bev flew in so that she could drive their car behind the ambulance, we loaded them up, said our "see you soon" and made plans for a Houston visit the following week.
If I would have known then that less than two weeks from that day I would be listening to a Dr. tell us that she wasn't going to make it, I would have at the very least clung on for longer. But I guess I could do that forever, right? I could spend a lifetime imagining what we could have or should have done on that last day before her surgery or said to one another that last day before she left for Houston when she was completely herself. The last time that I really saw her that way.
But that would take me away from the gratitude I have for the present (as difficult as it often is) and the pride I feel when I consider how the people I love banded together during some unimaginable weeks in Houston when our faith and character were tested on every level.
Like I told my dad when he left with her for TIRR, this is refiner's fire-- this will change us and, if we're lucky, we'll come out stronger and better for it. Even so, I wasn't prepared for what came next.
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