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Saturday, September 17, 2011

Positive Improvements

It really pays to have rock awesome doctors.

Let me backtrack a little here....

Earlier this summer, I had to have a regular check up with my surgeon.  The checkup went fine, but that day had been a particularly bad, emotional, depressed day for me.  I was totally out of sorts.  Insanely so.

In the office, my blood pressure was sky high, higher than it has ever, ever been.  Scary high.  Crazy high.  I never have problems with high blood pressure, so that was odd.  I'd totally lost it on The Eldest on the drive up to the appointment over something totally stupid.  I was weepy.  It was crazy.

Near the end of my appointment on this particularly, spectacularly bad day, I was crying about how horribly I was functioning.  How confused I always was.  How fuzzy my brain was.  How I could hardly read.

Dr. The Cutter immediately knew what I needed.  I needed to go see her friend, a psychologist, who treats people with chemo brain.  I really think she thought I was losing it, because--being the rock awesome doctor she is--she called him right there, left him a message when he didn't answer, and called to follow up with me a few times in the days following.

I've not had a day that bad since (maybe not before, either), and I tracked it down to an increase in my Ambien dosage.  Therefore, I should never have that problem again, but it sure was scary.

Since I didn't feel so fragile once I stopped taking Ambien, I put off calling the chemo brain doctor as I was thinking of him.  Yet, eventually, I did get around to it.  And I am so happy that I did.  It has changed my life more than I could have imagined, and I foresee more changes in the future.

For starters, when I finally did get around to calling him, he remembered who I was--and what Doctor the Cutter had said about my mental state on the day she last saw me.  He immediately agreed to set up an appointment with me and deal directly with my insurance company because one reason I hadn't called sooner was the "deer in the headlights" position I find myself in whenever I have to do such things as call insurance company or sort out such details.

So, one day in July, I met the Magic Man of Maumee as I've come to think of him.  We had a chat.  I detailed all of my chemo brain problems and frustrations, how my life was falling apart. 

It's hard to even put it into words....for starters, I was having incredibly hard times finding words, most notably nouns, even common every day words.

Here's an example:  my sons' names.  Sure, like everyone, I tend to call child A by child B's name.  I've always done that.  But for the last year or so, I can be staring right at a child and not be able to retrieve the name.  I'd just stare blankly.  There were other, more disturbing things. Like not being able to remember what I was doing while I was doing it.  Not being able to follow along in meetings.  Not being able to read a student essay without losing track of what I was doing.  Forgetting in the middle of writing a comment on said student's essay what it was I was commenting upon.  Being nearly totally incapable of basic math.  Having a hard time reading fiction.  A general lack of critical thinking and analytical ability.  Much worse spelling, which has never been a strong suite for me, than normal.

And then there was my inability to remember what I needed to do, to carry through with what I should do, to complete what I started, to start.  I'd find myself frozen with anxiety, unable to start things:  housework, grading, planning, phone calls.

I was perseverating on certain topics, to the point that I was losing sleep.
I was depressed.

I could barely do my job.  Teaching was hugely, hugely stressful for me.  I'd lost my pizzazz.  I could barely do what I needed to do.  I was constantly forgetting basics.  For instance, I had to set an alarm on my phone to remind myself to take attendance!  I wouldn't get prep work done in a timely manner.  I felt as if I weren't making sense when I'd talk to my students individually.

I couldn't grocery shop and then figure out what meals to prepare.  Food regularly rotted in the fridge because I'd forget I'd made it in the case of left overs, or I'd forget to repackage and freeze it in the case of buying large quantities of chicken quarters several times, or I'd forget to prepare what I'd bought.

We have eaten so much pizza in the last year......gag.

I couldn't retell simple movies that I'd just seen.  Heck, I could hardly watch a movie and follow along.

I'd get confused really easily.  I couldn't remember strings of numbers, even saying them out loud.

In general, I felt really stupid and incapable and everything was so damn hard.  So, so, so hard.  My quality of life was certainly diminished.

So the Magic Man of Maumee and I talked.  I explained.  I described.  I detailed.  The Magic Man explained what science and research has shown about the brains of those who have such complaints after chemo.  It's not everyone who has such changes, although women--especially--who are required to multi-task tend to find the changes most disturbing.  Women in a certain age range tend to find them more obvious and to bounce back less quickly than other women.  I tend to fall into all of the "risk" categories, including one of the biggest for significant negative change:  having ADHD.

For years, I'd suspected that I had ADHD.  I started wondering when my one son was diagnosed with pretty extreme ADHD.  I then had a student who did a fairly extensive research essay about girls with ADHD, and, in doing her research, she got tested and was diagnosed, began treatment, and her life improved greatly.

Yet, I couldn't get my life together enough to do anything about my suspicions...which is very typical of a person with ADHD.

So, the Magic Man gave me some tests.  I aced 'em.  He had my husband and one other person who would rather go nameless fill out some questionnaires.  I "aced" those, too.  If there is such a thing as "off the charts" in the area of non-attentive ADHD, it would be me.

The Magic Man's assumption is that I've always had ADHD but to a lesser degree, and that I'd been more or less able to cope, until doing two protocols of chemo aged me by 20 years and shrank my frontal cortex (I think that's what he said).

Anyway, it all made sense when he was explaining it.

He then gave me a bunch of other tests to rule out anxiety and depression and mood disorders and other, more serious, problems.  Indeed, they were ruled out for the most part.  At least the biggie, mood disorder, was ruled out.  Many people with ADHD also exhibit signs of anxiety and depression, as do cancer there were some blips on those tests, but nothing too significant.

After meeting three or four times, the Magic Man made a recommendation for some medication, which I started taking in August, and I've continued to see him for talk work and ADHD coaching.

The change has been phenomenal.  Life certainly isn't perfect, but I'm able to participate again.  I'm still overwhelmed by things with a lot of details.  But for the first time in a long time, I feel engaged in the world.  I'm not just going through actions in a daze. 

I'm as on top of things as I've ever been since having children, I think.  For example, I graded four sets of essays in three days last week without even noticing that I was doing it.  Reading and commenting on them was easy, and it wasn't at the last minute.  I *see* the flow of pedagogy in my classes for the first time in two years.  I can plan things and execute them.  I can be engaged in meetings.  I feel much more alert (and don't go thinking it's because I'm taking speed or something for the adhd, because I'm taking a non-stimulant med). 

Best is that for the first time in my LIFE, I can see how to work with my limitations and make life work.  A huge part of that is the "coaching" the Magic Man is doing with me, helping me to think differently about time, helping me to work with instead of against my neurology.  In a lot of ways, life is becoming the "easy" way I always saw it for so many others.

And this all reminds me of the first day my one son took his first pill for his ADHD--and trust me, I was loathe to the core to "resort" to meds with him--and he came to me and said, "Does everyone see the world so clearly?  Why didn't you give me that sooner?"

I can still tell that my brain isn't what it once was.  I still struggle for words.  Writing is hard.  Organizing my thoughts is hard.  I certainly don't have the IQ I once had.  I've been with my students for 4 weeks now and I'm still struggling to recognize them all and remember their names, but I'm way, way better off than I was at this point last year.

I still struggle to read, but I'm not struggling with student essays.  And I am able to finish novels now.  I can follow movies better.  I'm sleeping better.  I'm not fixating on negative thoughts so much.  I'm much better able to organize the family.

Meals and shopping are still a struggle, and I'll be working on that area in October.  Meanwhile, I've to a flow to my days, a flow that is intentional.  I don't feel so overwhelmed by getting out of bed in the morning.  I've been able to add activities to my schedule.

All in all, it's been a good thing, and the Magic Man thinks that at some point, I'll be able to stop taking the med.  We'll discuss that in 12 months.  I think I'll also be doing some brain training to try to get back some of the intelligence that I've lost.

Two days ago, I saw my onco, and we were discussing this.  She clearly believes in chemo brain and the havoc it wreaks in our lives.  She was very happy to learn that my quality of life has improved.  And later that night, she called me to let me know that another woman had been in to see her with similar complaints, would I call this woman and give her the Magic Man's info?  Duh.  Of course.


Pancake Goddess said...

fantastic - I am so glad you are feeling productive and back in the groove.

peopleofthecarb said...

Hi Dawn, I hope your story gets shared over and over and over again. Thanks for telling it...

Anonymous said...

I'm very happy that things are looking up for you. That you are finding ways to make that happen is inspiring.

*~Diana~* said...

Awesome doctors are worth their weight in gold! I'm glad to hear that you're doing better!

Anonymous said...

Wow, Dawn, I see myself in your post in so many ways. I felt like your son too, once on Ritalin - "wow - does everyone see the world this clearly?" Amazing for me, after 36 years undiagnosed. Thanks for sharing!