Monday, December 24, 2012

Reflections on 2012

                                          Pawleys Island 2012


It has truly been a year of great surprises and great joys.  As you no doubt are ware there have been many “surprises” over the past 12 months, but they have been accompanied by overflowing measures of love and support from family and friends.  So many dear folk have been in frequent touch, and others I know are thinking of us and praying for us that in so many ways our lives have truly been enriched.  As we pass this way, we continue to learn of those whose challenges are similar, and those whose challenges seem even more daunting, all of whom receive the benefit of our prayers as well.  We have enjoyed the visits and assistance not only of our kids and their families, but also of my brothers and many more, family and otherwise.  Wish there had been a more positive provocation, but it has been great to be so connected this year.

We have been fortunate that circumstances have permitted us the opportunity for many of our special trips and getaways that we have always looked forward to.  Of course the primary event in this category was our two weeks in Pawleys Island, SC, largely with kids and grands.  I was strong enough to play real golf, and even had a round or so in the 70s, and not from the old men’s tees.  This was preceded by a wonderful trip to New Mexico in July where we immersed in photo ops (Ghost Ranch, high road to Taos, Santa Fe) and lots of music in Santa Fe (opera, chamber music, Desert Chorale)  How thankful I am that all of this has been possible. 

John and Anna hosted all our family at their new residence in Roswell, GA for Thanksgiving,. We spent the week and it was a great time to be with the Stevens and the Clarks.  It is always special when the little girl cousins get together. While we’ll not have multitudes for Xmas at Casa Zora we will see almost everyone over the holidays, and have some time for ourselves also. We have booked a small house in Fernandina Beach Florida for the month of February, and are looking forward to being there and seeing cousins and other family, as well as other familiar faces and sights.   It’s a long drive, and I wish I could help Zora with it, but I’m hoping to be in better shape soon and able to do a bit here or there.

Just for the record, I have now had two surgeries for the brain tumor/cancer, which seems to have come back yet again. Regretfully the radiation and chemo did not do the job well enough.  While the surgeon was very optimistic following both surgeries, it is the nature of this particular cancer to recur, even tho it doesn’t metathesize elsewhere. It has been treated for the 6 weeks or so with a new (to me) drug therapy that looks very promising. News on its effectiveness will be available in early January with my next MRI.  Your prayers are welcomed.  You may also know that while the recovery from the initial brain surgery last December was progressing well, I suffered a fall and developed a severe infection, which required major surgery and kept me out of play essentially until late March.  In many ways the unkindest cut of all, stealing “healthier” time, and delaying chemo and radiation.  But I lived to tell about it and have no lasting impacts from it.

I feel ok, but not great, if a little fuzzy at times.  We can generally do what we want when we want, but my overall stamina and presence leave something to be desired.  On the good side, that means afternoon naps are not a problem.  I see fairly sudden and significant impacts on short term memory in particular, and some vision deterioration, which is not unexpected given the location of the original tumor.  I did have some significant stability issues over the past month or so which have been ameliorated with meds (steroids).  Unfortunately the meds also cause significant large muscle deterioration which has weakened my legs and shoulders wuite a bit.  The docs are tapering me off of them, but it will take a while to get my B game back,  let alone the A game.  But it will come; 
Our church choir is going to Prague and Salzburg May of 2013.  We plan to go and sing with them as well, and we have the house at Pawleys Island booked for August also.

As everyone tells you, every day is a new day, enjoy it for what it brings.  Whether you are healthy or not.  What happens, happens.  Raging at the tide will not make it come in or go out.

Thank you for the many kind thoughts, prayers and deeds throughout the past year.  You cannot imagine how much they have meant.  We have been blessed in many,  many ways.

May the holiday season bring you great joy.  I wish you every fortune and joy in the coming year, and look forward to telling you about an even better year at the end of 2013.

 Ross

Monday, December 17, 2012

17 December 2012 Update

Gentlefolk,

I'm afraid I haven't been very diligent with my postings lately, but the good news is that no news, in this case is good news.

I am well along with the Avastin treatments, and have had no side effects, other than limiting my alcohol intake.  A bit.  We will not know until my next MRI in January how effective it has been/will be.  I still get a regular dose every two weeks, and will continue apace until more data are in hand, positive or negative.

Further slight good news on the steroid front:  the docs continue to taper me down from the higher doses I had been on to regain some stability.  As I have complained, however, the price for that stability at least initially was a great deal of muscle loss, especially in the legs, and shoulders.  Doesn't help with the stability either.  There is also the fuzziness that comes during the course of the day, but it really just gets in the way of initiative.  I am up and about, but I do tire as the day wears on.  My expectation is that the steroids will be gone very near the first of the year.

By the way, for those of you who have nursed an older loved one who is/was on Prednazone, the steroid I'm on is in the same family and has similar kinds of side effects.

We have continued to be very active: concerts, short trips, visiting friends.  A busy life, but in the company of friends and loved ones.  What could be bad about that?

Off to New York and dinner and concert with Polly and John tomorrow.  And its not supposed to be very cold either.

Thursday, November 29, 2012

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!

Monday, November 26, 2012

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

Tuesday, November 20, 2012

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.

Tuesday, November 13, 2012

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.

Friday, November 9, 2012

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