Tim's Stroke: Four Weeks in (6/16/12)

My stroke occurred 5/19, so we are now at week four.

Since  5/27 I've been managing swim workouts on a fairly regular basis.  I find I have trouble doing long sets, but in general I'm fine.  The Pier to Pier swim is August 5th, but my trouble with cold water will keep me out of competition.  I am sure the distance would be fine. 

After four weeks, the cause of my stroke is still a mystery and is likely to remain so.  I've been looking at the various radiographic studies when I was in hospital, and nothing definitive shows up. I am still not sure why they are confident my stroke was embolic, meaning the clot in my head formed off site and found its way to my skull where it did damage. 

Maybe UCLA Stroke Center can figure something out July 12, but I doubt it.  Meanwhile, I'm looking through blood tests and such and finding nothing.  I'm attempting to set up an appointment with a recommended internist who I hope will take some interest in my case.  We'll see.

I am happy to notice that my fatigue, mainly in my legs, seems to be abating.  I'm not "normal" yet but I think I'm getting stronger.  My typing is still terrible, but I'm learning to proof read more closely given the high incidence of errors.

Gini: Second Chemo (2012)

At Cedars

First, a short retrospective: A week ago Wednesday May 31, Gini trekked to Cedars Procedure Center for installation of a peripherally accessed subcutaneous port, an outpatient procedure that, in theory at least, enables the infusion nurses to more readily access her veins.  The procedure went fine, despite the excess waiting, and we are eager to find if the new set up actually works in practice.  Head infusion nurse Wes again said during wrap up (literally) the port was a smart choice.

Thursday, Gini started with her standard blood tests. Her CA-125 marker, which was 9 four weeks ago (8 weeks post surgery), came I at  6.    That is a great result (we got the figure at 1:30p on Friday).  It appears the chemo is working. Yeah! 

The rest of her blood panels were, apparently good enough to proceed with the planned infusion cocktail.  Some of the figures are a bit out of range, but presumably that is "normal" given the chemo assault.

When she met with Dr. Li, Gini learned that she should do as well or better with her new regimen (carboplatin plus Lipodox once ever four weeks).  That is, her chances for a prolonged remission are "good," and no worse than any other cocktail she might be taking.  And, of course, an upside of her current regimen is that side effects are expected to be less noticeable.

We got to Cedars early and were ready for infusion by 9:25 or so, but things have  a way of catching up (or falling behind, etc.) .

Today, Friday,  Gini is  doing pretty well.  We've already been out for a short shopping trip and just need to keep a positive outlook…

Two weeks in (6/2/12)

All:

Time flies when you're having fun.  Indeed.

Last Saturday, 5/19, I had an ischemic stroke and went to hospital for a tPA, basically a clot buster.  It worked. I regained most of my major motor functions in short order.  I made it home 5/21.

By Sunday, 5/27, I felt well enough to do my first post-stroke swim workout and I have made five through Friday, 6/1.  I do well enough on short stuff, but I don't think I can keep my heart rate elevated high enough to swim a 150+ at a decent pace.

The cause of my stroke remains a mystery.  In my initial CT/MRI exams, the docs found evidence of at least two prior strokes, ones so small I never knew of them but they left their infarct signatures in my brain, such as it is.  I find, though, that nearly a third of "old" folks like me have had such silent strokes and never knew of them but for a subsequent scan with a different purpose.  So old strokes aren't likely to tell me much about my recent episode.

I turned next to an odd phenomenon: my low resting pulse rate--typically 42-51 bpm.  I actually have personal records dating back about seven years that show a pulse typically just over 60.  That rate has declined pretty steadily, some of which I attributed to some beta blocker drugs I was taking for hypertension but a lot of it seems to have come from left field.  I thought this "clue" might help us figure out why I formed a clot that lodged in my brain, but then I discovered a colleague who is younger than I, not a endurance athlete or such, and who has an equally low resting pulse but no stroke history.  So, back to square zero--no clue what brought on the events of May 19.

I find that my legs seem to tire sooner than expected, I loose balance or take missteps, and my speech, typing, and handwriting show "deficits" that seem to be stroke related.  At the same time, I realize that some of this faltering has naught to do with any "brain attack" and is just me being me.  In the past, I ignored such events, and now I ask whether they are stroke related. Truth is, I don't know.

In what is looking increasingly like a desperate attempt to come to grips with what is going on,  I will journey up to UCLA's Stroke Center and share my story with them July 3d.  My local physician suggested I talk with them to help figure out what, if anything, I need to do to lessen the odds of recurrence.  I am getting skeptical they will have useful information, but I suppose it is worth a try. 

Anyway, long story short, I am pretty much recovered and am just working on the details--like endurance, balance, and fine motor control.  I made a pretty miraculous recovery, largely because Gini did all the right things for me.  And the clot buster worked.  And I refused to take it lying down.  Now if I can just avoid a repeat…

Tim