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

Saturday, February 11, 2012, Houston

Saturday, February 11, 2012, Select Specialty Hospital, Houston

I am starting this blog as a way to let friends know what is happening with Richard Sobol.  I have been having a hard time keeping in touch with all of our friends.  I get lots of emails asking what is going on, and it is hard for me to respond to each one personally and separately because my involvement with Richard's daily life takes so much time.  In addition, there are friends who don't know what has happened who would want to know.  So I'm going to let people know how to read this blog instead (that is when I figure it out!)

I'm going to give a little background for people who are first inquiring; those of you who tuned in earlier may want to skip this part.

Basic time line: 

• 12/19 Richard began what was supposed to be six weeks of out-patient radiation treatments at M.D. Anderson in Houston (MDA);
• Richard's diagnosis was squamous cell carcinoma metastasized to a lymph node in his neck, with an "unknown primary;"
• in plain English, he had a lump in his neck;
• they biopsied the lump and found squamous cell carcinoma, i.e., cancer originating in the mucous membrane of his body somewhere, most likely his throat given the location of the lymph node to which it had metastasized;
• they biopsied his throat, found nothing; he had every radiological test known to man, no primary shown;
• there were thought to be two possibilities: one, his body was healthy enough to process out the primary cancer, unfortunately leaving behind a few cancer cells in the lymph node -- our bodies are filled with cancer cells, and when we are healthy, our immune system takes care of these cells -- or, two, the primary was so small it was undetectable;
• there was no way of knowing which was the case and downside of failing to treat existing, but undetectable, tumor bad, so radiation treatments were selected as the best way to proceed;
• radiation treatments to the neck and head have very difficult side effects because essentially what is happening is the neck and head are being burned;
• in 4th week of treatments (wk beginning 1/9), Richard got sick and then sicker.  At first we did not realize something more serious than difficult side effects of treatment was a problem
• 1/11 taken by ambulance to MDA ER, and from there admitted to ICU;
• very, very sick, infection in lungs principal problem, other problems among them septic shock; put on oxygen, first one mask, then another more closely fitting mask I guess then attached to ventilator;
• 1/13 breathing tube inserted and heavily sedated to tolerate tube;
• 1/24 trach inserted;
• 1/25 taken off ventilator, receives oxygen with trach collar;
• 1/27 Gpeg stomach tube inserted;
• 1/28 out of ICU, moved to regular part of hospital;
• in the 17 days Richard was in ICU, he became extremely debilitated, when he was transferred to the regular part of the hospital, he had very limited use of arms and legs; the positive side is that every day he has regained some increased ability to move arms, hands, feet and legs.