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

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.

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.

News from Hopkins Oncologist, 10/18/2012

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October 18, 2012

Gentlefolk,

We had our first visit with the medical oncologist at Hopkins today as a follow-up to the finding of malignant cells in the tissue that was removed from my brain last month.

We talked about several options, but at this point he didn’t feel that we had enough data to recommend, or start, a treatment program.  His team, including my neurosurgeon, will talk further, and make a recommendation following my next MRI in early November.

Basically, the previous surgery was quite complete, and the amount of cancerous  tissue found was so small, that there is not really a target to aim at, either medically, or with radiation. (or surgically for that  matter).  There could be some medical treatments called for even if the tumor does not reappear, but that will all pend the reading from the next MRI.  At the moment this is considered good news.

We really like Dr. Grossman, not that we didn’t like our previous oncologist, but Dr. G seems to have a good perspective, and we really like his approach (don’t do anything just to do it.  Don’t do anything that removes down the road options unless there is good reason for it to be done).

While we did talk about some experimental treatments that might involve the National Cancer Institute in DC, many of the options could be administered by the medical team in Wilmington.

While it’s a bit disconcerting to have the can opener of Damocles still poised over my head, it is somewhat reassuring also that a sense of urgency seems to be not too high in their minds.

We will continue to look forward to months and years before son of tumor appears, even as we know that at some point it will reappear and more urgent options will be necessary.

In the meantime we are basking in the glow of the recent visit of my Australian cousin Bob and his wife Robyn, looking forward to hausmusik at Casa Zora coming up, and a visit to the Roswell Stevens at Thanksgiving.  Plans are underway for our church choir’s visit to Prague and Salzburg next year and a golfing outing to Oregon in the late winter or early spring as well.  Life will go on.

Thank you for your thoughts and prayers. It really does  make a difference to know you are in my corner.  I continue to recover from the recent surgery, regaining strength and endurance daily.  Mind you, a glass or two of wine at dinnertime doesn’t hurt either.

All for now.

Blessings to all.

Ross

Who are these Me x.y people?

Gentle readers,

I sometimes loosely refer to myself as Me4.0 or 2.0 or whatever.  Having some roots in the scientific tradition it occurs to me that I should identify the naming convention that I use, which is quite strict, so that you the intrepid reader will know which me is which.

The nutshell version is simple:  each major surgery takes "Me" up one full "version", e.g. 3.0.  Other events in between may or may not be represented as incremental upgrades, e.g. 3.1.

For the record, my reconstruction of version numbers is as follows:

Ross Stevens’ timeline

Me 1.0.                   November 29 1943. Wilmington/Seaford Delaware.

Me 1.1.                   1957-1970. Aiken (SC) high school, Georgia Tech, Purdue U

Me 1.2                    1965-1973. M/M Stevens and family

Me 1.3                    1971-1996 DuPont years

Me 1.4.                   1996-2002 Stevens Associates

Me 1.5                     2003 Retirement

Me 2.0                    BS#1 December 7, 2011 GBM (glioblastoma) resected (Weingart, Hopkins)

Me 2.1                    31 December 2011 blackout. Fall. Hematoma abcess

Me 3.0                    January 10 2012 hematoma abcess repair. (Giberson, Christiana Care)

Me 3.x                     January- August recoveries, radiation, chemo, PT, life

Me 4.0                    BS#2 17 September 2012  second resection. Cleaned cavity walls. (Weingart, Hopkins)

PS:  We had a wonderful weekend  cousinly wedding in Greensboro NC.  Fairly long drive back, but the traffic wasn't bad, and neither was the rain.

October 2 2012

Tuesday, October 2, 2012

First post- surgery visit with the neurosurgeon today. Pathology reports on the tissue removed indicate some small quantity of malignant cells present in the material removed.  While not much, I'm afraid it is the equivalent of being a little bit pregnant. Well the stitches are out now in any case. Small progress.

The surgery itself was not difficult, and he felt like it was successful. And it probably was. But it is next to impossible to get it all, especially in the brain. most importantly, however, the radiation and chemo were not successful at stemming the tide of regrowth.

What's next?  We are getting set up with a medical oncologist at Hopkins in the next week or two to discuss options, probably clinical trials. The last round of chemo which was postponed for surgery will be cancelled. More radiation could be in the future, but there's not a big enough target now, there is some risk involved and one only gets two rounds with the zapper.  Our hopes now will hang on what the new oncologist has to say.  Tere will be more frequent MRIs in the future to monitor activity, so I'll get more rounds with the anvil chorus of MRI.

Current meds are being reduced or for steroids, eliminated. golf ok, strenuous exercise another couple weeks. Singing ought to have better sound now that the resonating chamber got enlarged a bit.

Clearly not the news we wanted, but there remain positives on which to clasp.  We know this to be the nature of the beast, and knew that the day would come. There will be worse ones as well, but we are far from there.  I got no symptoms, there is not a mass, there are options to be considered, and I've got the best support team anyone could pray for. Laissez bon temps roullez!

Ross

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).

21 April 2012

Gentlefolk,

Its been a slow week here in Lake Wilmingone, but things continue to look up.  Progress seems to be observable even if I'm still not at the level of energy I would like.  I am just back from a 2 mile walk thorough the woods nearby, so I'm beginning to work myself back into shape.  I also get a PT evaluation on Monday to see what the pros can do for me.

Our week began with a visit from high school friend Judy Tyson and her husband Tony Snithson who live in Rochester MN.  While the visit was short, we were quite efficient at the various and sundry "catch-ups" that were necessary to fill the previous 25 years.  Judy and the Tyson family have been close to the Stevens, since before there were kids in either, both in Seaford Delaware and in Aiken SC, where we went to high school.  Stupid me did not get a picture.  Tin-man strikes again.

While it's not news, we got a fine reassurance when the neurosurgeon gave us a reading of the brain MRI this week.  In his words, it was as clean as it could be, which is a wonderful thing to hear, even if he's not the first to say it.

We were able to speak with cousin Bonnie who has been at MD Anderson the past couple of weeks getting evaluated for lung cancer and cancer of the sternum.  They don't have all the answers yet, but hope to be definitive late next week.  Put her in your prayers also.

It's been a great week for sharing meals with family and friends.  My only regret is that my appetite has fallen greatly with the combo platter of chemo last week, and the steroids working their way out of my system.  Hopefully I will enjoy a few good meals before I go back on chemo for round 2.  Maybe between the exercise and the reduced appetite some of the excessive weight gain of the past few months can be cast away.

As we prepare to hit the road for Georgia next week, we look forward to seeing brothers and sisters, and to celebrating little Suzanna's second birthday.  Can't wait.

Best wishes to all,

Ross


Prior post from 9 April:
Gentlefolk,

I pause in the midst of the process to reflect a bit on what has happened and how I have responded to it so far.  I hope that you will find something of value herein, even if there is relatively little of medical progress to report.

I have been struck by the number of comments from folks who have said (in so many words), "you have been so open about your condition.  I am really glad to know what's going on.  You have been so positive facing such a challenge.  I don't think that I could do the same."

There have also been some very kind comments regarding my prose in telling this story, but I will take them as all compliments:  with appreciation, but also with a grain of salt. An adulthood misspent by writing and delivering speeches lends a certain advantage when it comes to punctuation, capitalization, spelling and such as that.  Not to mention 1-800-BIG-WORD.  But thank you nonetheless.

I'm afraid that I find myself much better able to control my emotions while writing than while experiencing the various impediments and injustices that my condition puts in my path.  Don't ask;  don't get me started.  You definitely see the positive me in what I have written to date. If "growing old is not for sissies" carries any truth, it goes at least double for cancer, even cancer of relatively useless organs like the brain.

As to the sharing thing.  I certainly didn't start out with the intention of being "open."  Whatever you have perceived in my irregular missives, is frankly just me, and you likely would have gotten the same thing whether family, friend, or innocent bystander feigning interest.  Several of you have said, "In the same circumstance, I could not have been so open," and it is you who have prompted my reflection and composition today.

First of all, you who feel that "full" disclosure is not your style, I respect that and know that your comfort level reflects a lifetime of becoming the person you are now.  If the shoe don't fit, don't  walk in it.  On the other hand, I would definitely commend thinking about how you would approach dealing with a similar situation should you find yourself in such sometime down the road.  What I have experienced in connection with folks from the past has been truly incredible to me.  I have been supported by kind words, phone calls, visits, encouragement, and love to an extent not at all imaginable through all of this.  I am certain that much of this simply because folks out there are aware of what is going on.  (Of course Dottie's role in all this is huge, but she still has to have something to distribute.)  I have learned that while my close friends are still there, I have many other friends that I didn't really realize that I had. Thank you for coming to the surface as you have.

There is also a line that we all perceive through difference lenses, namely the "let me tell you about my operation" syndrome.  None of us want to experience this level of detail, and if my updates have crossed the line at times, I apologize.  In these cases less is definitely more.

15 March 2012

Gentlefolk,

Just a few words to confirm that the radiation treatment of the former brain tumor is complete.  And likewise the first round of the chemo is complete as well.  I now have to face 30 days without either, and hopefully never have the radiation again.  The chemo will start up again, and continue for another 6 months, but not on a daily basis, and since it's a capsule with water, is not a problem so long as I continue able to tolerate the dosage.

I also see the end of the steroids in a couple weeks which will help my revitalization and strengthening  pricess immensely.

Still am tiring easily, and pretty foggy at times, but this curtain should begin to lift in the next week or so.  They say.

We are, however, active and getting out and about, in addition to the occasional PT I'm able to force myself to do.  For example, we've been out to several concerts, I got started on the veggie garden yesterday, and we're back in the choir at church.

The photo below is of the techies at the Radiation Oncology Center, yours truly, and my mini-me, the mask they use to assure the zappage is on aim.

15 February 2012

Update from the Honey Badger Survivor

It’s hard to know where to begin, or frankly what to say that somehow seems fresh and additive, but I’ll give it a try in the interest of direct communication.

Life has settled into something of a routine, which for a long-term retired person, doing what he wants, pretty much when he wants, is not necessarily a wonderful thing.  I AM NOW SCHEDULED!  M-F go for radiation in morning (not early, but no sleep ins).  MWF nurse comes to change butt dressing (about an hour).  PT every day for about an hour (in house thank goodness, with therapist/tormentor observing a couple of days during the week). Then there are the doctor’s appointments:  surgeon every two weeks, medical oncologist every two weeks, infectious disease specialist periodically, radiation oncologist weekly (but immediately following radiation).  I am also on oral chemo, which is a small capsule with water every evening at bedtime.

All the books people have given me, and other amusements lie fallow in the shade of the general household stuff that must be fitted in otherwise.  But thank you anyway.  And I hardly have energy or time for vocalizing, and the muscles there need a lot of therapy too.

So that is my life, at least for now.  In terms of symptoms, I have been relatively free of anything that gets in the way of simple tasks.  I am still quite weak, in spite of the PT, but I recognize small bits of improvement.    Roughly two weeks (1/3 of the course) into the radiation and chemo I am still symptom free, although they say expect some weakness and maybe headaches as time passes.  No pain for now, only the inconvenience of carrying around the vacuum appliance which is stimulating the wound healing on the backside (and doing a very good job, too).

My vision continues to be an issue, but I’ve made an appointment with the ophthalmologist, and have identified an eye therapy specialist in Wilmington who may be able to help with the peripheral and any other more challenging vision issues.

My mental capacity seems ok, although I continue to have a little “fuzziness” that mainly affects my attention span and leaves me a little lethargic at times.

Through it all, Zora has been a huge help, especially since Winterthur Museum remains closed until March.  And about the time she will be going back to work, my brother Henry will be coming to visit for a bit more than a week.  My other brother, Alex, was here last week and worked my honey-do list down to manageable proportion, and was great company also. By the time Henry leaves the radiation and chemo will be just about over.  I will continue to have supplemental chemo treatments throughout most of the year, but I get 30 days off of everything starting March 14!  Hallelujah!

We are still blown away by the volume of emails, cards, letters, food, drivers, and all manner of kindnesses that folks have sent our way over these past many weeks.  We cannot begin to repay in kind, but hope that we can send it, with interest, to others in need.

There may be more to say, but this is what you get today.  I’ve been sitting on the butt-sucker too long, and the song is over.

Thanks for your love and support,

Tin-man

25 January 2012

25 January 2012 Update from Ross

For those of you who have been out of the loop he last couple of weeks, my apologies, but we have been through an unexpected and quite difficult stretch.

Basically I have been in hospital since New Year’s Eve, with a couple of days off for ignorance.  I had a delayed post-surgical event that resulted in a black-out, fall, and severe bruise on my back-side, which ultimately became infected, requiring surgery.  Because of the bruise’s location this has been quite tricky and has had me in hospital since the first week of January. Thankfully I have been in in-patient rehab since Saturday past that has been wonderful.  My strength, balance, and general condition are much improved, and I expect to be going home, albeit with in-home nursing care, Friday afternoon.  That said my endurance is still a fraction of what it was before the fall and surgery, so the January Ross is not yet the December Ross (who was most fit).

The healing of the wound really is the limiting path item right now, although we are fighting to get the radiation and chemo started ASAP also.  Many plans are in question based on the timing of all this of course, but the important thing is to heal the wound and fight the potential siblings of the tumor before they can get re-established.  And this we will do at the expense of all else.

In the meantime my awareness and evaluation of the post-tumor symptoms has been pushed to a sidetrack.  I continue to read Oliver Sacks and find many comparable experiences and things to learn thereby.  And many other experiences that are interesting, but not really applicable.  But the cataloging of observations has been set aside.

Once home, I will appreciate some company, but my endurance is still low, and we would appreciate a call beforehand and your understanding of the value of short visits, as many issues of home care and therapy will still surround me.

I cannot thank you enough for the many thoughts and prayers and cards and emails, so many of which have gone without reply.  Please know that I have valued every one, and in fact could not have made it to this stage of recovery without them.  God bless you every one.

6 January 2012

Dear Family and Close Friends,

Today has been a good day, but also exhausting.  We saw the Radiation Oncologist who will be directing my care and have made appointments with the Medial Oncologist who will be administering the chemo.  The radiation schedule has been set (beginning Jan. 23 :  ( ) and the preliminary CAT scan has been done..  In addition the mask that will be used to guide the ;aim of the “gun” has been made.  Lots of q and a, and we really like the rad/onc.

On the other end, we have gotten a lot more info about the blackout event and subsequent issues from last weekend.

The event was seemingly triggered by something called SIADH, you’ll have to look it up, but its not unusual following brain events such as surgery.  The high protein, high salt diet seems to be helping, but weekly blood work will be done to confirm.  That and getting my weight up, I’m about 10 pounds low right now, should be a big help.

The biggest problem frankly has been a bad contusion probably on my left pelvic bone from the fall.  It has gotten progressively worse throughout the week, but learning today that there was not a break is a great relief.  I cannot sit, and standing is not for very long, but I’m hopeful that a weekend of NFL will help effect an improvement.

16 December 2011 Update

At risk of trying to do too much with my diminished hand eye coordination right now, I‘d like to pass a long a personal update from the tin man.

Our kids busted us out of johns Hopkins yesterday afternoon, and 3 days post head in the can-opener I’m home watching the grand girls decorate the trees and feeling no pain.    Wouldn’t mind a glass of wine in the hand, but I’m still on restrictions.  Don’t want to get on the wrong side of the line.  Still got a few wobbles, but every step helps the next one.  Initial reports were largely on line:  Successful surgery, and visually deemed to be a high level tumor, but pathology reports aren’t completed. Treatment follows data, so data will lead to a battle plan. In about a week.  You may know that the surgeon implanted 8 chemo wafers in the cavity.  Almost certainly follow-up radiation for 6 ½ weeks and maybe some follow-up oral chemo.

Recovery of fine motor skills will come, but will take some therapy.  Who knows what else. when?  There are real optical issues, but the vision itself is ok.  Processing of visual inputs is more the issue.  Don’t always recognize what I am seeing, but I’m hopeful that getting the squirrel out of the brain will help.

I have the best team in the world behind me, both at Hopkins and at home.  We are not at the beginning  of the end, just the end of the beginning.  Whatever is left to be dealt with is not a hangnail, but it can and will be dealt with. 

We ain’t saving any leftovers for the honey badger.

Thanks for all the many expressions of love and support.  I almost feel guilty being the recipient of such largess, but I could not have gotten this far without it.  Keep it coming, but pass it around as well.  Lots of folks need it right now.

Ross