Another diagnosis for my mom

How do I now tell the story of my mom's surprise and sudden death that shouldn't have been a surprise or sudden to any of us, including her? All of us were taken by surprise at the sudden inevitability of her death and I do remember the details, as they related to me, vividly.

Starting in late May/Early June of 2014, my mom, who was told she was "in remission" according to a CT-scan back in March of the same year, started acting 'funny'. By funny I mean we all noticed serious changes in her demeanor and behavior. First she had an incident where she discovered that she couldn't speak. She was very aware there was an issue and communicated somehow to my dad: we need to go to the ER because I don't know why I can't speak. In medicine this condition is known as aphasia.

Therefore, my dad took my mom to the local ER where the clinicians there figured my mom was having a stroke. They even ran a CT scan of her brain to look for bleeding. As they were doing the scan, she suddenly was able to speak again. Seriously, she found words and could speak and could only explain the frustration of knowing what she wanted to say and the words not coming out.

She and my dad (along with the medical staff) were so relieved. It was probably a transient ischemic attack, or TIA, which is similar to a baby-stroke, where there is not full loss of blood flow to a part of the brain. The two of them called me from the ER as all of this was happening and I coached my dad to tell the doctors and nurses that my mom was a cancer patient who had recently completed her chemo treatments. I wanted him to assure me that the doctors knew of her Stage IV cancer diagnosis.

Dad seemed distracted at that time. I simply must have given him too much information that seemed irrelevant or unimportant or too difficult to communicate. Plus, the ER should have had access to her full record. Maybe he wanted to avoid stating what should have been obvious. At any rate, I doubt that her condition was discussed as potentially relevant to the cancer.

The local ER ultimately decided to recommend my dad drive my mom to another location so my mom could have an MRI of her brain. To this day, I have no idea why the CT scan wasn't definitive for the doctors there. What did the CT show?

After getting the MRI, my parents were told they could leave and go home. As they were walking through the parking lot to their car, my mom became aphasic again. The two of them hurried back inside to inform the medical staff and once again the aphasia disappeared suddenly. The medical staff offered no explanation at all, nor did they express concern or recommend further evaluation or testing. I pressed my parents for answers to my questions: What did they tell you? Did they prescribe blood thinners? What's the follow up going to be?

My parents just said that the medical personnel believed my mom had had a series of 'little strokes' (the TIAs) and the situation would eventually resolve itself.

Now this explanation or 'brilliant' diagnosis sounded so stupid to me at the time that I again, as I had MANY, MANY times over the previous 12 months, felt so helpless, powerless and frustrated. I simply couldn't imagine a health practitioner speaking to me directly and offering such a flimsy explanation for a serious symptom. If I or one of my sisters had been present, I don't believe any of us would have accepted that analysis and instead would have pressed for more answers; and we would have received them, along with better treatment, attention, and explanations.

Since the diagnosis and plan didn't sit well with me, I asked my parents about when the MRI results would be read and they, of course, had no idea. Once again, I wouldn't have left the facility without asking this question and determining who from their healthcare organization would need to know the results.

My mom and dad went back to their lives, figuring that my mom's TIAs were over. Again, nothing added up to me and I felt frustrated in my own ability to have a positive impact in the management of my mom's health and wellbeing. Ironically, I felt inspired in the helplessness to act and act I did!