Sunday, June 30, 2013, 1326 North Rendon Street, New Orleans

I am surprised to see the last time I posted was more than a year ago, and interested to see that I assumed then that the story was complete.

Where are we at now?  Well, Richard is I think doing wonderfully well.  Here he is on May 29th, his 76th birthday.

Richard Sobol in City Park on his new red, birthday bike.

Richard is still bothered by phlegm and coughing stemming from his radiation treatments and does get tired, but he exercises every day, and eats more and more all the time.  A year ago when I last posted, he still had his horrible stomach tube.  Now he's just a regular guy.  I think he looks great.

Late last summer, after the last post, a CT scan in Houston showed that the lymph node to which Richard's cancer had originally metastasized was growing again.  Still no sign of the primary.  In October, Richard's surgeon at M.D. Anderson, Amy Hessel, took out the lymph node.  Periodic scans of different sorts since then show no cancer.

Meanwhile, Richard and I again took up our search for a new home in Sonoma County, California -- a search abandoned when a clinic in Occidental, CA, found the enlarged lymph node in September 2011.  We went out to California in October, in December, and for the month of April.  When we struck out each time, I was devastated.

We began planning to move to California now many years ago.  We had tired of living part of the year in Maine and part in New Orleans.  Having two houses was expensive in terms of our energy expended opening and closing houses and traveling back and forth, and of course obviously financially maintaining two houses cost a lot.  We weren't really truly a part of either location, and were tired of being asked in May in New Orleans "when are you leaving," and of people in Maine asking us in late September "what are you still doing here?"  We sold our wonderful house in Hancock, Maine, in the fall of 2010, and in 2011, began looking for a house in Sonoma County.  We picked California in part because the climate is more moderate than either New England or New Orleans; in part because the politics of the State are better aligned with our own; and in part because want to be closer to Richard's daughter Joanna who lives in Los Angeles.

Early this month, as I sat sulking about our inability to agree on a place in Sonoma County, suddenly a very nice looking house, in the area we like, appeared on the internet.  Yesterday, we concluded negotiations with the sellers, and we close at the end of July!  Selling our house in New Orleans will take a while, and moving will probably be pretty awful, but we hope to be in residence in our new house early this fall.

The airport in Santa Rosa is a little more than an hour's flight from Los Angeles, and we are hoping to see much more of Joanna and her husband Ian and other family members, both in Sonoma County and in L.A.

We're going to take it slow and easy on the move.  We'll have room for friends to visit.

Next time it occurs to me to blog, the date line will be Sebastopol, CA, instead of New Orleans.

*   *   *

Before writing this, as I read over my old posts, I saw the photos of Richard and me with the Howell family in Houston.  Gwen Howell, who was a good friend to me and who was a wonderful woman and such a wit, died last summer following her own long bout with cancer.  She is missed.

Sunday, June 3, 2012, 1326 North Rendon Street, New Orleans, Louisiana

Last Thursday, May 31st, Richard had a CT scan of his head and neck at M.D.Anderson Cancer Center in Houston.  Because his radiation treatments were interrupted by his illness last winter about half way through the planned six-week course, the status of his cancer was unclear.  The scan showed no remaining cancer.  We are so grateful for this news.


Richard continues the slow process of recovering from the effects of his treatment.  By coincidence, we met up in the head and neck clinic waiting room with two people who were treated for similar cancers at the same time as Richard.  Both of them reported that they too were still suffering from the effects of the treatment.  We were told by a doctor in the clinic that these effects would gradually abate until a year from the end of Richard's treatments, and that after a year he'd know what the bottom-line residual effects would be.


Thanks for all the continuing support from all our friends!  Much love.

New Orleans, April 11, 2012


Today is Richard's and my 37th wedding anniversary.  We also celebrate May 28th which is the day in 1972 when we began living together, so in a month it will be 40 years.  I sent this photo taken last Sunday as an email to my blog list, but I post it here to complete the blog picture:

A walk at the Lake front, Easter Sunday 2012

Thursday, April 5, 2012, Home, 1326 North Rendon Street, New Orleans, LA


We're home in New Orleans, I've been too busy to blog.  All told, we were in Houston 3 1/2 months.  Richard was in three different hospitals for 10 weeks.


People in hospitals in Houston told me to try to lighten up and save myself for when we got home.  They were right, at home you have to do all the stuff the hospital staff did and take care of your home.  Still, things are settling down, Richard is getting stronger, and is now able to do a lot more for himself.


Richard's trach is out, he's enrolled at Touro Rehab Center as an outpatient and is working with a speech therapist, an occupational therapist, and a physical therapist.  His work with the speech therapist to regain the ability to swallow is promising.


We are much indebted to the people who helped in Houston and to get us home.  The Howell family gave me a place to stay for more than a month, and I very much enjoyed their company.

Gwen and Anne Turner Howell

Gwen and Don Howell visited Richard at TIRR

Our friend Patty Ingold and her cleaning lady cleaned 3 months of dust and grime at our house.  Our friends Lawson and Clint Allen arranged for a private plane to fly us home.  Our friend Ronnie Kohler flew to Houston, drove my Prius home stuffed to the roof with all our stuff, and unloaded it on this end.  Our friend V Ingold met us at the airport in New  Orleans,

drove us home, helped us get settled in, and gave me fish to eat.

Richard's occupational therapists at TIRR helped us figure out what we needed to enable Richard to function at home and how to get it.  Richard's physical therapists at TIRR taught him how to go up and down stairs and how to get into the private plane (no mean trick -- narrow stairs, no railings). 

Hector Toro, occupational therapist

I probably won't be blogging any more.  At this point, it is just a matter of time before Richard gets back to normal.  Someone told me that for every day a person is in the ICU it takes a week to regain one's strength.  This would mean the end of May at least.  The drama is over, it's now just the work of rehab.


Pretty much every late afternoon or early evening, Richard and I drive up to City Park near our house, and go for a little walk at the Big Lake, a wonderful promenade much used by New Orleanians.  We walk a bit, Richard with his walker, and then we sit and people watch, and then we walk back to the car.  I think that soon Richard will not need the walker.

Sunday, March 11, 2012, Texas Institute of Rehabilitation and Research (TIRR), Houston, TX


Richard finally arrived at TIRR (Texas Institute of Rehabilitation and Research) late last Monday afternoon.  He was dressed in his hospital gown and sported his oxygen hose, his urine bag and continuous feed to his stomach tube.


Tuesday morning, the TIRR staff took out the "Foley" (one tube/tether gone), discontinued the oxygen to Richard's trach (second tube/tether gone), began "bolus" (intermittent) feedings (third and last tube/tether gone), had him dress in regular clothes, and issued a wheelchair.   The transformation was remarkable.  TIRR's attitude is you can be a regular person and you may/must develop independence whatever the challenges.

Much of the first week was spent in evaluations.  Richard was asked what he wanted to get out of his stay at TIRR, and he said he'd like to be able to walk on his own and go home.


The routine of speech therapy focusing on swallowing exercises, occupational therapy focusing on the mechanics of every day activities and how they may be accomplished from a wheelchair or balanced against a walker, and physical therapy to strengthen all the muscles in his body, most particularly his legs and arms, was established right away.  (In the photo below, Kristi is not holding Richard up, but rather merely reassuring him that he is balanced.)






Richard loves gyms, and when he first walked into TIRR's main gym with all its equipment and dozens of therapists working with all manner of patients, his eyes were as big as a six year old's Christmas morning.  He has an exercise card on which he and his therapists have written down what machines he can work on and at what level.  The machines are pretty much the same as those Richard has worked out on for years.  In addition to the daily sessions with his speech, occupational, and physical therapists, Richard has an exercise period.  A group of therapists is assigned to help patients move from from machine to machine.




Wednesday, his third day at TIRR, Richard walked with a walker down a long hall, out the front door of the hospital, across a slightly bumpy, uneven driveway, up a shallow handicap ramp at a corner, and then back again.  Once back in the gym, unassisted except for sturdy railings on each side, Richard walked up four regulation-sized steps, turned around and walked down.  For weeks, we have been wondering how he would manage the six rather steep steps up to our front door.  Now the answer is clear: he'll walk up them.


Also on Wednesday, we went to a meeting of the team of people working with Richard to hear their assessment of his situation and thinking about how long it would take him to meet the goals he had set for himself.  I was totally non-plussed to hear them say Richard's tentative discharge date is Friday, March 16, that is next Friday!  Richard didn't hear it that way, nor did his nurse who went to the meeting with us.  But almost right away, our case manager came by to visit to begin helping us plan for his discharge next Friday.  All this is rather abrupt, and I have to say I panicked at the thought.


I think in terms of his ability to get around, to transfer from bed to wheelchair or walker, etc., he's ready to go home, but I'm concerned about his trach and the status of his ability to swallow.  His TIRR doctors say they won't make him leave until after his trach is out, but the process leading up to removal of his trach has not yet begun and even when it does begin it takes a few days to get to the point that they remove the thing.  I'd like there to be a decent period after the trach is out to make sure everything is in order before we go home.  The period leading up to the reinsertion of a trach after it was removed the first time around was pretty hairy.   Similarly, Richard's regaining the ability to swallow is such a big thing.  He is supposed to have another swallow test this week before we go home.  If he passes, he will begin taking soft foods and water by mouth.  If he aspirates anything into his lungs, he runs the risk of pneumonia again.  I'd just as soon he went through the initial period of taking food/water by mouth with medical help nearby.  I have expressed these concerns, and I think it is likely the discharge date will be kicked over into the following week (week of March 19).  We left home December 9th, and believe me we are both ready to go home.  I would love nothing more than to sleep in the morning until I wake up, to make a cup of coffee in my own kitchen, to help Richard in the confines of our own home, to see our New Orleans friends.


Richard's physical therapist has gone over all aspects of our situation at home, and has made recommendations for and will write prescriptions for all the equipment he needs.  The mostly young therapists who work at TIRR are really, really good.  They understand exactly how to do the critical things a disabled person needs to do, e.g., move from bed to a wheelchair, and exactly how to explain it.  In order to be a therapist here, one must have a doctorate.  (There are also wonderful, well-trained assistants who do not have doctorates.) 


On Friday, Joanna Sobol McCallum came from Los Angeles to visit her father.  This is Joanna's fourth trip since Richard fell sick.  The other three were when he was in M.D. Anderson's ICU. The last time she saw him, he couldn't move his arms or legs.  It was an emotional reunion, and we were so glad to see her.  We spent some of our time together taking pictures, and here are some.

Sunday, March 4, 2012, Select Specialty Hospital, Houston TX


It's a perfectly beautiful day in Houston, cool and clear.  From the vantage point of our room, we look north in the foreground  across an older residential neighborhood to Rice University.  The live oaks below us are getting their new growth, birds are everywhere.  I imagine I can see the Spring migration before my very eyes.  This afternoon, if we can overcome obstacles such as nurses' concerns that there is no doctor's order permitting it (will the doctor come in time to "write an order?"), Richard and I are planning a trip out on to the vast emptiness of the open air portion of the parking garage situated just below our room.  It is hard to have to negotiate so much with people on whom one is so dependent.  But I am convinced that on balance the staff at Select Specialty is genuinely trying to help us.  Nothing is perfect, but I will say this for them that, when mistakes are made, it is taken as an opportunity to try to do better next time around, no one is trying to say nothing has happened. 


I have delayed posting this week hoping that I could report Richard's move to the Texas Institute of Rehabilitation and Research (TIRR).  But Richard hasn't been able to move over because (1) his red blood count had dropped below acceptable levels, and (2) he had a low grade fever for several days.  We were supposed to move last Tuesday, but couldn't for these reasons.  Same on Wednesday, then Thursday, too, and then Friday also.  This was profoundly depressing as each day passed.  We have now been at Select Specialty for more than four weeks, 7 1/2 weeks since Richard went into the ICU at M.D. Anderson.  But yesterday, Richard received two pints of blood and had no fever, no fever today.  One of his doctors who came in today said maybe tomorrow TIRR will say he's okay to move over.  TIRR is a rehab hospital, and although its patients have medical issues, they must be sufficiently stable that they can engage in rehab.  Richard has continued this week with physical therapy (basically leg exercises and walking), occupational therapy (basically arm exercises and motor control), and speech therapy (swallowing exercises designed to improve his ability eventually to swallow -- thus eat and drink by mouth), but he had to step down the scope of his effort.  TIRR doesn't want to have the focus of its efforts with Richard be what to do about his red blood count and where his fever is coming from.  Hopefully, they will be satisfied with his condition and readiness for rehab this coming week.


As we have stewed this week unable to make the move, we have focused increasingly on how we could just get home to New Orleans.  None of this would be simple.  The seven hour trip by car or even by ambulance seems out of the question.  We are beginning to investigate the cost of air ambulance, plane or helicopter.  But the more basic question is what we would do once at home.  Richard is on a waiting list for Touro's rehabilitation hospital in New Orleans.  We have gone over and over what it would take just to go home to our house, no TIRR, no Touro.  Our dear old friend George Strickler visited us this weekend from New Orleans.  George's now deceased wife Carolyn struggled with MS for years, and George is very knowledgeable about what it takes for a person with disabilities to be at home.  He has offered much help for which we are so grateful.  But the exercise of trying to think it through has brought home to Richard how much at this point he really needs the support of hospital staff.  This leaves us hoping and hoping that TIRR will do right by us this next week.


But meanwhile, as I have been writing this blog, the pieces for the trip outside have been coming together.  The respiratory therapist will get us a full tank of oxygen after her lunch.  Richard's nurse today has agreed that there is no reason he needs to trail along his food (bottle on a pole) for the time it takes to go out for a while.   So we are hopeful of experiencing this afternoon the first moment of relative freedom in the sunshine since early January. 

Friday, February 24, 2012, Select Specialty Hospital, Houston, TX


It's taken me a while to set up this blog.  I've had invaluable assistance and encouragement from my friends Darlene Fife, George Cooper and Erin Laine.  Thank you!


The first post tried to provide some background.  This time, I think I'll just write about where things stand today.  The big news is that yesterday the Texas Institute of Rehabilitation and Research (TIRR) accepted Richard as a patient, and he will most likely be moving over there Tuesday or Wednesday of next week.  TIRR is where Gabby Giffords did her rehab work, and look how wonderful she looks after all her troubles!


But as for today, we have been at Select Specialty for three weeks since February 3.  We have a beautiful corner room with panoramic view of Texas Medical Center, downtown Houston, and west to the Galleria neighborhood.  The building is LEED gold for those of you who follow such things.  Modern, high tech, good wifi connection, the best special parking spaces reserved for alternative fuel cars -- that's my Prius.  The room is intended for two patients, and I have been living in the room with Richard.  I sleep in a hospital bed right next to him where I can keep an eye on things.


Richard's medical condition today involves a lingering upper respiratory infection which is being treated with an inhaled antibiotic.


The trach he received at M.D. Anderson hospital before we transferred over here was taken out Monday February 13.  Alas, on Friday February 17 in quite a dramatic, emergency moment another trach was reinserted.  Although the crisis passed quickly, he could easily have died in this moment.  If I hadn't been so freaked, I might have enjoyed the theater.  Handsome young ENT rushes in, assesses situation, adreneline pumping, starts giving orders, apologizes to Richard, says it's going to hurt, and simply pushes his finger through the mostly closed up hole in Richard's throat and reinserts trach.  Yoicks.


Richard has progressed remarkably in his physical therapy and occupational therapy.  He has regained much use of his arms and legs.  He has Thera-Bands attached to every corner of his bed.  This week, he walked twice around the "unit" (our part of the hospital), this about 600', using a standing walker (patient rests arms on platform at shoulder height, platform attached to rolling frame that patient stands/walks in middle of).  Yesterday he walked about 75' using a conventional walker.  This is much harder to do.  He is able to sit on the edge of his bed, but needs considerable assistance to make the transfer to wheelchair or walker.  (As I am writing this, Richard is walking around the unit using the conventional walker, he's just made it around the whole way once, and is setting off on his second round.)


Richard's once totally awesome leg muscles and arm muscles are gone.  He is very, very thin.  But he is fleshing out very slowly but surely.


Richard has failed a "swallow test" twice.  The radiation he had to his neck has severely affected the muscles it takes to swallow.  He does exercises to bring these muscles back.  This is probably his most severe challenge.  At this point, he is being fed through a tube into his stomach.  He won't be able to take liquids or food by mouth until he can regain use of the muscles in his neck.  This week, the hospital had us look at a video about how people manage tube feeding for life.  The prospect is pretty depressing, but video showed people who have met this challenge and gotten on with life.  Our assumption is that this will only be a temporary thing for us.


This afternoon, my sister Marjorie is coming to visit from Mattapoisett, MA.  We are looking forward to this very much.  She will be here for the weekend.  Thank you to all who have asked whether they could come to visit.  Visitors could not really have fit into our days here so far.  From our perspective, so much is going on, it's hard to figure out where friends could be involved.  Marjorie's visit will give us some perspective on this.  Once Richard gets to TIRR, he will reportedly be even busier than he is here at Select Specialty.


Our friend Darlene sent Richard a card that showed two people with a bear between them pushing a car out of a big mud puddle.  The caption says "when you need help, you meet the nicest people."  This is so true.  One good example is that friends, the Howells, of our old friends from Washington, the Graveses, have taken me in.  The Howells live here in Houston very close to Select Specialty in a ritzy residential neighborhood in a beautiful house with a lovely guest unit.  So far, I have only been able to take advantage of the space to store all the stuff we had in the apartment we rented here in Houston when we thought we'd only be here for Richard's out-patient radiation treatments, to take showers, and to do my laundry.  Tonight, Marjorie can sleep there.


When Richard moves to TIRR, I won't be able to stay there over night so I'll sleep at the Howells.  TIRR encourages family to participate in all the therapies so I will be at TIRR during the day.


Yesterday, in a phone call, our friend Lolis asked Richard why we weren't considering the Rehabilitation Center at Touro hospital in New Orleans.  The short answer is I didn't know about it.  Everyone here in Houston is so proud of TIRR that I've been focused on it.  But I started looking into Touro yesterday and it is promising.  It is pretty small, and they have a waiting list.  But it may be that after Richard has been at TIRR for a while, he might move to Touro if he wasn't quite ready to make the transition to our house.  Our house in New Orleans is one story, but it has six pretty steep steps to get into the house.  Inside things would have to be done to make it possible for Richard to get around.  TIRR has people who help you work through all these issues.


All for now, thanks for all your good wishes, emails, phone calls, etc., etc., love to you.  Annie and Richard