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