Monday, May 14, 2012

"Just a little stick..."

Peter went in today to get the first of possibly two procedures to restore his voice.  Hopefully this will be the only procedure, as patients who undergo this temporary one are less likely to need the second more permanent fix. 

This fix involves injecting collagen into the paralyzed vocal cord to "plump it up" so that it touches the working one, thus closing the gap that has been causing Peter's whispers and weakness and sometimes causing him to nearly choke.  Read back a couple of posts for more information on the problem.

Again, I was impressed with Dr. Seth Cohen's un-rushed way with us and with the short wait.  As we were leaving I  saw this poster in the waiting room and decided that every office should have this:
Just keep us posted...

The procedure was pretty uncomfortable for Peter, but thankfully quick and free of the potential complications Dr. Cohen had listed (such as the needle getting clogged with the collagen).  Peter had opted for the office visit version of the procedure.  Also available was the hospital version that required a brief slumber under anesthesia.

Dr. Cohen numbed Peter's nasal passage, trachea, and neck.  The trachea numbing involved an injection right through Peter's neck and the sudden introduction of liquid caused him to cough violently (but briefly). 

A resident manned the endoscope while Dr. Cohen guided a needle in through Peter's neck.  I was able to watch, and kept waiting for the needle to show up on the monitor.  Instead I realized that the vocal cord was getting fatter!  I have no idea how Dr. Cohen got that needle in from the back side, but he did, and the whole thing was over very quickly.

The paralyzed cord is now over-plumped, and will take a couple of weeks to get to a size that will give Peter something like a normal voice.  So far his voice is less breathy, but hoarse.  He should be able to cough correctly now, have less chance of aspiration, and hopefully have more strength for things like climbing stairs. 

This will last 2-3 months.  The (big) hope is that in this amount of time the damaged nerve will regenerate and he won't need the second procedure.

In other news, Peter is back to exercising regularly, and I've gone back to work part-time.  Appetite is still an issue, as is Peter's weight.  He can eat pretty well, but he is still on the learning curve of taking in small meals slowly enough and often enough.

On Peter's last night in the hospital friend Holli Crawford and I signed up for a Triathlon that is happening this coming Sunday.  I've questioned my sanity many times, but right now am grateful that I had something to push me to exercise.  Whatever happens Sunday (finishing is my goal), I am glad to have had time in the pool, on my bike, and hoofing it along the roads out here.  It has been fun to train with Holli, too.

Friday, May 11, 2012

Doing OK


Today I visited the Red Cross blood center in Durham to say hey to long-time platelet center director Mary Spradlin and her colleagues. Until my diagnosis I was a regular donor and enjoyed the experience due mainly to the consistent friendliness and professionalism of the staff. They sent me several encouraging notes over the past few months and I wanted to say thank you. Mary gave me the good news that I can donate again when I reach the one-year anniversary of my last chemo session. She told me that a regular donor at the center has chosen to recruit 40 platelet donors, including many first-timers, to help her celebrate her 40th birthday.

Though I usually feel really good due to daily exercise, keeping a steady weight is still a big problem. I'm learning to eat more slowly, take in smaller portions, and eat more frequently. Not doing real well with the first item.

I'm still considering what to do about the oncologist's recommendation for more chemo. In short, I'm scared to do that (with resulting symptoms of lethargy, food-aversion, possible mood changes) and afraid not to. My inclination is to go ahead and begin use of the pills- three a day for two weeks on, then one off, for 15 weeks- and stop it if or when I decide the negatives are setting me back too much.

For those local readers, please consider dropping by The Depot in Hillsborough this Saturday night 5/12 at 8 PM to hear Red's Rhythm. Frank Hunter has been ably filling in for my vocal parts. It's discouraging not being able to sing, especially on the a cappella harmony beginnings to songs like "Heartache Tonight" (Eagles) and "When Will I Be Loved" (Linda Ronstadt). I got to participate in last Saturday night's Murphey School Radio Show, hosted by Jay Miller and Ebeth Scott-Sinclair of the Shared Visions Foundation and organized by the amazing Donna Campbell and Georgann Eubanks of Minnow Media Productions. The next show in this successful series is set for the first weekend in November.

I was also able to return to a Grange meeting this week- very satisfying to be among those generous and kind friends again.

Tuesday, May 1, 2012

Back to Duke

[By Susan]

We've had some great guests lately - last weekend Peter's college friend Jeffrey Johnson was here and helped me coax Peter out for a meal at Thai Cafe in Durham.  Peter's side-effects through this ordeal have involved food aversions and nausea.  For me-- I can't seem to get enough curry in my system.

Peter's oldest friend (from first grade!) Evan Rashkoff and his wife Clare were here this past weekend.  We had some great times together that included cycling the American Tobacco Trail (Clare was on her in-line skates) and celebrating our 31st anniversary with Evan and Clare plus friends Joe Coates and Geri Dawson.

Evan is an orthopedic surgeon and accompanied us to Peter's appointments on Monday.  Evan will write a "guest blog" soon, but in the mean time I'll tell you a little bit here.  We have a lot to decide.

One appointment was about Peter's voice loss, which is the result of damage to the left vocal nerve due to retraction during surgery (which can't be avoided).  The left cord is paralyzed, and stuck in the slightly open position.
 One option was a short-term fix of a collagen injection to the vocal cord, which would "plump it up" and allow the right cord to make contact, and therefore make sound.  They didn't offer vocal therapy (coaching) but apparently this is a standard part of the package, so we have to ask about that.  This short term fix could be done with a very brief general anesthesia, or with local numbing in the office.  That's a choice to figure out.  We forgot to ask if Peter could get his lips done at the same time.

Often the nerve will regenerate/repair over several months so that the second option isn't necessary, but it is there if Peter needs it - a "remedialization" of the left vocal cord, which is basically "shimmed" into place.  Our anesthesiologist friend Bret Stolp  said that this is done with the patient awake, so that they can try out the different positionings until they hear what sounds like their own voice.

I am not going to say much about the oncologist visit because I am pretty emotional about it...the offer of more chemotherapy despite the fact (and the doctor said this several times) that there is no evidence or proof that taking it would be helpful at all.

It is a drug used for metastatic breast and colon cancer (Xeloda).  It is a series of pills taken at home...two weeks on, one week off, times 5 rounds for 15 weeks total....nearly four more months of...a long list of side effects.  I think, but am not sure, that Peter would be part of a clinical trial.

Offering this just when Peter is exercising (cycling, swimming, and weight-lifting) and starting to feel strong and gain weight really knocked me for a loop.  After seeing how well Peter is doing the doctor said that his current regimen might be just as or more effective than the chemo, but once you offer it, the "what if" factor looms large and taunts us.  And there is just no way to know.  It might do more harm than good.

WWHD - What would Hippocrates do?

First, do no harm.