November 28 update

Saw the oncologist, Dr. Misleh, Wednesday for a two-week check-up following the first dosing of the anti-cancer medication, Avastin.  No problems with the meds, and blood work looks good.  Had the second dose of Avastin, likewise with no immediate or subsequent issues.


We will continue with Avastin every two weeks for the foreseeable future.  It's too soon to expect any major impacts on our little beastie, but we'll have a next MRI in early January and see where we go from there.

We are starting the phase-out of the steroids which will continue until they are proven necessary.  It'll take several weeks to avoid shocking the system, but I'm happy to be on this trail, mainly to regain more clarity of mind, and to enable strengthening, especially of the larger muscles, thighs in particular.  Muscular deterioration is a problem, and the 'roods prevent redevelopment too.

Learned that the 'roids also can interfere with sleep, so we're advised to move them earlier in the day.  A good nighter would be most welcome.

Feeling good enough to get to choir practice in the evening, and even found a little voice to work with.  If I could only find and keep my place on the music.  Oh well, when in doubt, sing louder!

November 26. Brief observations.

Not enough light for any fine work.

Big picture seems to be getting harder to make out. Especially in new surroundings.

Reading issues getting a bit more pronounced. Missing words and sometimes assigning alternate words. Miss opening letters sometimes. Working to focus doesn't always kick in. Putting words together into thoughts or "messages" is a bit of a challenge. Sometimes it's just a string of words.

Scanning for text recognition is getting harder also. pattern recognition isn't really doing much.

The good news is that more familiar locations remain familiar. Airport confusing.

Little problem with familiar faces. Maybe a little "distortion" but recognizable. Infrequently seen faces may be a total blank. Verbal clues help a lot as do other larger scale visual clues.

Short term memory is more like nano memory. CRS.

Fog a little better but new tasks even on computer can be off-putting.

Voice very dry. No resonance at all. Pushing fluids. Maybe some help.

No pain. Fairly steady. 9 holes of golf at Atlanta national with Juannie Sunday. Two pars!  Several bogies. Glory of 100 yd drives. Great time.

On plane returning to Wilmington. Still basking in the glow of all our kids and grands from turkey day in Georgia.

Cheers

Ross

20 November 2012 Symptoms

Inward appearances and conditions.

20 November 2012

Vision seems to be deteriorating somewhat.  The absence of pattern recognition seems to be coming back more strongly than it was earlier in the year.  Faces may be unrecognized; familiar locations seem strange, Looking for “things”, readily identifiable, can be a real challenge.  At times the most familiar items just don’t appear, even if looking right at them.  Sometimes it just takes longer and the eyes will focus in, but the focus process is quite slow.  This limits my ability somewhat in reading and in reading (especially) new music.  Hope the old grey lump is up to some memorization by next time for performance.

Whether focus or peripheral vision, I find myself bumping into cabinet doors or such on occasion.  No nasty impacts, but still major frustrating at times.  Another way of saying it is that sometimes the big picture just doesn’t come into view.  Football on tv is ok but fine points of the action are not there.  Likewise sometimes just takes work to find the QB before the play starts, and getting  good focus in place before the play starts

The immediate meds which have stabilized my balance issues (steroids) leave me a little loopy nonetheless.  I run out of gas during the course of the day, but not from over-exertion by any mean

I walk in open space pretty well, but crowded or tight spaces can be off-putting.  I’m not entering any hop-scotch contests at the moment either. 

My pick-up of new concepts (using the new espresso-maker, e.g.) is a lot more difficult.  Even short bits of reading comprehension are fairly ineffective also.  Hoping that as the ‘roids move on this will improve also.

On the plus side, my keyboard skills seem to be improving a bit, mainly by remembering where to place my fingers down on the start positions.  There is still a lot of muscle memoryin the finger positions, so long as I’m starting from the right places. One small frustration moving away, if only a bit.

We are hopeful that the major med I’m now on (Avastin) will act to enhance the balance things also.  We really want to get off the steroids just to keep some more mental focus.  Also the steroids do lead to large muscle degeneration, which I don’t need any more off.  The whole combo platter has me somewhat dried out also, and the singing voice is losing range and resonance partly as a consequence.   All of which is just fine if the Avastin knocks out Mr. Nasty as hoped.

November 13 Update

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November 13, 2012 We had our visit with the medical oncologist today and have come to conclusions about ongoing therapy.  In fact, we had the first dose of “Avastin” today and have done well with it. At this point it is about a 90 minute IV, which will be repeated every 2 weeks, over  less than 90 minutes.

There was a possiblility of taking part in a national clinical trial of another drug that could be added to the Avastin, but there did not seem to be any significant medical reason to add this complication and the dox both here and at Hopkins agree that the Avastin itself is the best option  The Avastin will likely help manage the wobbliness I’ve experienced, and perhaps eliminate the need for the steroids which we’d like to lose.  It also is the most likely option at a therapy that might arrest further tumor development, an maybe even shrink what we now have.

Update from 11/7

Gentlefolk,

We now have a couple of days under the belt with steroids in the system.  Wobbles are much improved, and no headache issues.We are not yet back to the old normal, but visible  improvement anyway.  Looking fwd to the next round of beneficial indignities.  More news on that next week  Oncologist-appt Tuesday.

Thanks for your thoughts, payers, and tangible gestures of support.

Ross

I had my first post-surgery MRI last week and have been in touch with the “tumor

team” at Johns Hopkins for interpretation and guidance. 

Bottom line is that the nasty guy seemdsto be back and we will begin another round of

medical treatments soon here in Wilmington.  The treatment of choice is Avastin

which acts  like chemo but without the side effects.  It will reduce swelling in the

brain which should improve my wobbles also.

Currently I am struggling a bit physically, but I’m not in any pain. I have lost most of my capacity for independent mobility.  I need a cane and a spotter to leave the bed or to proceed almost anywhere.  My surgeon seems to think that these symptoms

are caused by the pressure from  the swelling of the brain; therefore, he has put

me back on steroids and is hopeful that they will largely alleviate these symptoms

within a couple of days. 

This story will change as we get more information.  We already realize that there

are questions that we neglected to ask and points on which we need clarification.

The fact remains, however, that we still have confidence in our medical team and

are optimistic as we go forward.