19 September

So far so good.  Surgery went well. The rock star was happy with what he was able to do, pretty much all he had on his list. Going in. Post op mris looked very good, so whatever he dug out, he got it all. Best news is thatVISUALLY neither he or the pathologist thought they were looking at tumor tissue.  Path reports in 2 weeks, but fingers are crossed.

Surgery Monday, icu Monday afternoon, recovery room Tuesday, home today Wednesday!

Feeling good with all the connections off. Walking a bit but not as steady as I'd like. More to come. No golf for a few weeks. Really grateful for the kind thoughts and prayers. I have carried by a thousand hands- known and unknown. I wouldn't say it's been a wonderful experience, but it has not been bad and head recoveries tend to be a little faster. We are cautiously optimistic. If you need it Hopkins is a fantastic place. Hope you never do, but if so, think about it.

Cheers rossobasso

September 12 Follow-up

September 12 Follow-up

The surgery is now scheduled for Monday, September 17 around midday at Hopkins.  The opinion going in is that we are dealing with tumor regrowth, but that will be confirmed or refuted during surgery.  At this point the amount of growth is relatively small and seems to be sprouting from the cavity walls of the first surgery.  It has invaded little if any "good" brain tissue, which means I continue to function with no noticeable loss of cognitive function or otherwise.

I don't expect this to be a major upgrade to the operating system, but rather a matter of security upgrades and bug removals.  Me 4.0 is on the way and hopefully will resemble Me 1.0 or maybe be a little more user friendly.

In the meantime it's choir tonight, maybe some singing with Patty in the next few days, and golf on Friday with my angels (Jack, Ed, and Tim)

Thank you all for the many kind thoughts and encouragement that have already come my way.  I am extremely grateful for such a network of prayer and support.

9/11 update

Had an MRI this week. It showed that the suspicious growth from the last MRI had increased in size since August. Doctors advice is for follow up surgery which will be at Hopkins in a week or ten days. He indicates the stuff is amenable to surgery which with follow up treatments will give the best chance for recovery. No indication until the can opener is applied whether or not this is really tumor.

Not the answer we wanted, but we can work with it.

As some of you may know, I have been living in a state of slight anxiety over the past couple weeks awaiting an MRI reading from my neurosurgeon.  While speedy response is not part of his MO, and I know it, my oncologists had advised me that the MRIs looked suspicious.

I have now heard from Dr. Weingart and he confirms that there is a small mass that seems to be growing on the edge of the cavity left by the first surgery.  While it is small, it has grown since the last MRI in June.  He is not saying that it definitely is a reappearance of the tumor (which is not unusual with this type of tumor), but it is suspicious.  His counsel is for another MRI in two weeks and a review at that time.  I will keep you posted.  Prayers are appreciated.

Meanwhile, we are approaching the end of our annual two weeks at Pawleys Island, SC with family (see silly picture, attached).  It has been a bit stormy on the weather side, but great to be with kids and grands and on beach time for a while.  For those of you wondering our exact whereabouts, we are at Pawleys for the rest of the week, and go to Atlanta Sunday to help John and Anna with moving into their new house in Roswell.

We'll be back in Delaware sometime Labor Day weekend.

Wish we had better news, but we got what we got.

I'm feeling well and had a good round of golf with Troy on Monday - a 76 albeit from the seniors' tees.  And I still enjoy a good glass (or is that a glass of good) wine around dinner time.  I'm focusing on quality, not quantity right now.  Mo' bettah!  Looking forward to getting back to singing in the fall, but not the drive back from Atlanta on Labor Day weekend.

In the meantime, it's one day at a time.  And good days at that.

Cheers,

Ross

22 August

23 July 2012

On Convalescence

Editor’s Alert:  The following essay is rambling and bordering on TMI, but it recounts the current state of things with me.

It has been much on my mind lately that while I’ve been getting stronger and looking less like a parolee from a refugee camp, I also am not as up to speed (read strength, stability, endurance) as I would like to be.  I listened to parts of a program today on the radio that was centered on the psychological ramifications of convalescence, and it struck me that this is the issue I am dealing with.  While I am improving, I am not yet well, and I know it. In fact once a month the oncologist has me take these poison pills.  There is probably no plausible reason I should even think of considering myself well.

Maybe being of good humor tricks me into thinking I am in otherwise good health.

I also think, however, that many long term convalescents like myself, at some point hit the wall of frustration and I impatience.  I haven’t hit the wall, but I have gently rubbed its veneer.  My “aha” is that I must avoid comparisons of me 2.0 with me 1.0 at least until a couple of months after the chemo is completed, which would be in November at the earliest.

I now recognize it as the old half full, half empty argument.  I know I should (and do) take joy in the skills and strengths that have come back into my life, but after almost 9 months, I also want to be back to me 1.0.

I do have the cheese slicer of Damocles hanging over me even tho the tumor is gone.  And as indicated the chemo that continues is a constant reminder, but so far the virulent beast that is glioblastoma (GBM) has not come back.  Already I have beaten the stated longevity expectation from this beast and beat it again and again I hope and intend to do.  The right side of the curve is pretty long and I intend to stay there.  I am pretty sure that there has been some loss of brain function from the tumor/surgery, but I am thankful that it is small.  Perhaps the most perplexing is my continuing inability to recognize people’s faces.  Forgive me if I have “blank-faced” you;  I will probably do it again.

The recovery from second surgery in January is more frustrating as this was the one that really set me back physically.  And of course the overlap with cancer treatment has slowed that recovery.  I would guess that physically I am at 75 to 80% .  I can generally do most everything that I want to do, but in some cases (golf, running, singing) nowhere near as well as I remember.  Of course as we age we remember those skills as somewhat greater than they really were, but that’s a separate issue. 

In these cases the most general advice is to take it one day at a time, and enjoy each day for what it brings.  If I can get out of the comparative mode I know I can face my days in this way.  Getting out of the comparative mode is the key.  I have much to take pleasure in.

This week I have learned that I may have developed an hernia, altho a definitive diagnosis has not yet been given.  For the time being I am off of golf as the rotational elements of the golf swing cause me quite a bit of discomfort.  “Thankfully” I can still do my strengthening exercises without discomfort so they will continue apace, and hopefully I just have a muscle pull of some sort that will heal itself.

I am two thirds done with the chemo, and I’m about the same with my overall convalescence.  I’m going to enjoy all that gets put on my plate in the meantime.

Zora and I are off to Santa Fe Sunday morning where we will be until 8 August. We are looking forward to a great week of opera, chamber music, friends and photography.  After a couple of days of laundering we will be off to Pawleys Island for our annual two-week family adventure.  Definitely half-full!

Thanks for listening.

Rossobasso,

The Scarecrow formerly known as Tin Man,

Honey badger survivor,

and Nanu to his grandchildren

23 July 2012

2 July 2012

Gentlefolk,

Since I messed up the photos in my previous epistle, and several of you commented on their absence, I include them in this delivery, hopefully in a readable format. 

Also, I have been informed, and wikipedia confirms, that I have been addressing myself incorrectly as the tin man, from the Wizard of Oz.  In fact, as you probably all know, it was the scarecrow that didn't have a brain; the tin man didn't have a heart.  Thank you for your forbearance.  As a consequence, I shall no longer refer to myself as the TM, and take it as a heartless response should you should continue to do so.  (If Dan Gilman were still alive, he'd have corrected me long ago.)

Heat wave has abated somewhat up this way.  Low 90s today.  Got my 4+ miles in Saturday before it got too beastly.  Looking fwd to July 4th with the Clarks and the dunk-tank.

Cheers,

Rossobasso,
The scarecrow, formerly known as Tin Man
and Nanu to his grandchirrun.



Alex, me and Henry in front of Great grandfather Hutchinson's old house in Staunton, VA

Clarks and Stevens following Mom's interment in Staunton at the old family plot.  The Atlanta Stevenses couldn't make it.

25 June 2012

With apologies to those who already have most of this message via Facebook, I have FINALLY heard from my neurosurgeon, who has declared the most recent MRI (almost 2 weeks ago) to be clean and spotless.  TWO MORE MONTHS OF GRACE!

I just finished round 3 of 6 of chemo and am almost back to normal.  Even tho it is oral and not IV, it still takes a toll on one and I am looking forward to getting it behind me.  Speaking of, the rear-facing wound remains healed and causing no issues other than the physical tightness and weakness that came about through the long recuperation period.  PT is helping with that and the exercise level is getting more and more back to normal.

Golf is not yet satisfying, but it continues to improve.  I am walking/carrying, but the feet are begging for relief.  My jog/walk routine has continued to improve, both in times and endurance, but I’m beginning to wonder how much longer I need to put me knees to the stress of 4-5 miles at a time.

We just got back from several days in Staunton, VA with my brothers and their wives and our daughter and her family, where we buried our mother in the family plot.  (Photos attached)  Her predecessors were among the original settlers in the Shenandoah valley and we had a great time checking out old family sites, as well as the fellowship of greatly separated kin.  We rented a house through VRBO which was out in the country and was outstanding in every way.  Recommendations available if you’re planning to be in the area.

Best regards, best wishes, and much love,

Rossobasso

The Tin-man

Nanu, and

Honey Badger survivor.

Family at Mom’s interment.

Alex, me and Henry in front of Great-Grandfather Hutchinson’s house in Staunton (across the street from Stuart Hall).