We Didn't See It Coming

We didn’t see it coming.  It was the week after Thanksgiving last year.  I had just spent a week testing in Terre Haute, Indiana.  I was on my way home, where I would spend one day, unpack, maybe relax, watch some Bundesliga action, and then pack again to leave on the following Monday to go to Langley AFB, Virginia for yet another test.  There I was, eating breakfast in the Indianapolis airport while waiting for my chariot to take me home when from out of nowhere, I got a text from my son Greg.  Until then, Greg never texted me about ANYTHING.  I knew something from him had to be serious, and it was.  His mother was wandering about the house, acting very confused, unsure of who was in her house, unsure of who the people in the house were, and that she was seeing things no one else could see.  Greg wasn’t sure what to do, so all I knew to tell him was to be with her, be patient, and answer any questions she had.  Then right after I landed in Fort Walton Beach, I got another text, only this was from my other son, Mark.  He simply asked “when are you coming home?”  I told him I’d just landed and that I would be home in a few minutes.  I ran two stoplights getting home…

After I finished texting with Greg, my next text went to a friend in Oklahoma.  Her name is Jackie, who is a registered nurse and a teacher.  Additionally, she is also a patient advocate.  I call her “Nurse Jackie”.  No, she isn’t the pill-popping drug-addicted nurse like Edie Falco played on Showtime – Jackie is the real deal whom I trust with all medical questions.  I asked her what kind of doctor I should get Carol to see.  She replied we needed to see both a neurologist and her oncologist.  She said it was imperative that Carol have a CT scan and a complete metabolic profile.

Carol is a breast cancer survivor.  She did six rounds of chemo along with radiation therapy.  Chemotherapy did a number on her brain [they call it “chemo brain”].  Since she finished chemo, she was somewhat forgetful, but not like this.  When Greg told me about Carol’s confusion, I had a nasty flashback to November 2016.   A month after Carol got her breast cancer diagnosis, my sister Judy was diagnosed with a Grade 4 glioblastoma.  That’s the same thing that killed John McCain.  Judy was recovering from having her glioblastoma removed when a heart attack killed her.  Prior to Judy’s diagnosis, my nephew and my brother-in-law told me about Judy having very bad headaches and was also acting “confused”.  When I got the texts from Greg, I couldn’t help but think “oh shit – the cancer’s back!”

I knew that I would have to see the family doctor in order to get to a neurologist.  While I went to Virginia, Greg made the appointment to see the oncologist, but they wouldn’t see Carol until the first week of January.  He had even less luck with our primary care doctor – she was booked solid for months.  Greg did his best, so I cut my trip short and came home.  Maybe I could get somewhere with these people that he couldn’t.  Several years ago, I experienced chest pains while we were out eating dinner [they turned out to be back spasms that felt like chest pains].  Carol insisted we go to the emergency room.  I discovered then that the words “chest pains” got you to the front of the line at the ER.  I took a chance that if I wrote something similar to our primary doctor, I would get the same result.  One thing that Greg told me was that Carol was seeing “people” in all the trees that surround our house.  We call them the “tree people”.  Knowing this, I wrote to our doctor that Carol was having hallucinations.  As it turns out, I cracked the code.  The word “hallucinations” did the same trick for Carol that the words “chest pains” did for me several years ago.  Instead of having to beg, plea or grovel for an appointment, they called me to say they wanted to see Carol ASAP.  We got in two days later.

Carol got her head CT, an EEG and her metabolic profile.  The CT was clear.  That meant there was no cancer.  The CMP revealed a Vitamin D deficiency, but nothing else.  The EEG came back “normal”.  We also got something else we were looking for – a referral to a neurologist.  Without a referral, YOU pay out of pocket, not the insurance.  The local neurologists were booked for months [that is a recurring theme in these parts], so we were referred to a neurologist in Pensacola.  Pensacola is forty miles west of us, so at least we didn’t have to go too far.  We saw the neurologist two weeks after we saw the family doctor.  He gave Carol a cognition test.  He asked her thirty questions.  These are simple questions like “what is today”, “who is the President of the United States”, “what city are we in”, and so forth.  She answered nineteen of the thirty questions correctly.  That puts her in the dementia range.  He then ordered an MRI so he could rule out a stroke as the cause of her current difficulties.

Since this was going to be a contrast dye MRI, Carol had to get bloodwork done so that the MRI techs and the neurologist could be certain that her kidneys could handle the dye.  Here is another thing I learned going through this process – medical establishments in this area are lousy at communicating with each other.  Carol had her blood work done locally.  We told the neurologist that we were getting the blood work done in Fort Walton Beach, and we told him which facility was going to do the work.  He requested the information accordingly.  Fast forward a couple of weeks to when it’s time for the MRI.  We made the drive to Pensacola to get the MRI, only to find out they never got the results of Carol’s blood work from Fort Walton Beach.   It amounted to this – no blood work results, no MRI. 

We had to trek upstairs to the lab so that we could get the blood work done [again].  While we waited, I filled out reams of paperwork.  Carol now has much difficulty filling out forms, so I did it.  Most if not all of the information they requested on the hardcopy paper was information I had already provided to the hospital’s patient portal.  I pointed this out to the person who took our paperwork, and I asked why he couldn’t get the information off the portal.  His answer – “we’re not connected to the patient portal”.  My response – “what good is having a portal if you can’t use it?”  To my surprise [as if I wasn’t surprised already], he answered he wished they had such access.  The nice young man took our paperwork and we headed back downstairs to get the MRI.  As they say in the commercials “but wait, there’s more!” 

For our trouble, I was presented with yet another stack of papers to fill out.  As I was filling them out, I noticed they were the same exact forms that I filled out just one floor above us in the same building.  In addition to medical establishments in this area being lousy at communicating with each other, this particular hospital is lousy at sharing data within its own walls.  The imaging department didn’t have access to the patient portal either.  Maybe someday this hospital will be dragged kicking and screaming into the 21^st century, at least as far as data sharing is concerned.  After I finished the paperwork [again!], Carol got her MRI.  I was tempted to have some choice words with the management, but they had already gone home for the day.  The people doing the actual work were as nice and professional as could be, and we thanked them profusely because we were the last appointment of the day [and it was Friday], and they stuck around for us.  The results of the MRI?  Good.  Nothing unusual, and best of all, no stroke.  We left the hospital thinking to ourselves “we know what it isn’t, but we don’t know what it is”.

With all of these tests coming back “normal”, we’re at a loss to find out what’s wrong with Carol.  The next time we saw the neurologist, I asked him directly - “the MRI was clear, the CT scan was clear, the EEG was normal, and the blood work didn’t show anything bad.  What's wrong with my wife?”  He answered me as directly as I asked him [which I greatly appreciate] and he didn’t mince words – “your wife might have Alzheimer’s”.  I asked if there was a way we could know for sure, and he said “no”, not until it’s progressed far enough that it can’t be mistaken for anything else.  Carol is only 58.  How could someone so young have something like Alzheimer’s?  My friends and co-workers wonder the same thing. 

Here’s a little tidbit that is interesting and makes me go “hmmm…”  Two guys from my office, both of whom are in the same age group as Carol and I [between 55-60], have medically retired.  The cause?  Dementia.  Is this a strange coincidence, or is there something environmental going on here?  It has been suggested to me that Carol go through some kind of heavy metal detox.  We spoke with a nurse who visited the house yesterday that as we get older, our bodies don’t make the necessary things needed to detox.  The next time we see the neurologist will be at the end of this month.  In the meantime, I have some homework to do about heavy metal detox and how to go about it. 

More to follow…