Friday, May 27, 2011

Transition Anxiety

When my kids were little, I had a number of 'how to' books to help me as I sought answers to child rearing questions and issues.  One that I remember well is the problems that babies and toddlers have with transitions.  Right after Matt was born in 1990, and I returned to work after my 3 month maternity leave, I was dropping my three kids off at three different places before work:  Sarah to kindergarten, Seth to day care in a nearby neighborhood and Matt to a downtown child care facility.  It made for a very rushed morning.  Sarah's first day of kindergarten was especially memorable  because I ran into the car of her after school teacher in the parking lot.  At that point, I should have realized that I, too, had trouble with transitions.  But it was so much easier to focus on the kids' reactions rather than my own, that I didn't get an inkling of it until high school graduations and college departures arrived.

In recent days, my transition anxiety has blossomed beautifully.  Sarah will graduate from medical school on June 4th, and move to the Twin Cities on June 7th to begin her 4 year residency in internal medicine and pediatrics (med/peds).  I will miss her.  Her compassion, care and medical insight have been integral to my well-being during the past two years.  Serendipitously (if there can be such a thing with cancer), my condition has brought us together far more closely than I could have ever dreamed of.  She has been, truly, a blessing for me.  I am so very fortunate.

So earlier this month, I had a champagne brunch to celebrate her graduation.  I invited many of my friends and neighbors who had watched her grow up over the years and could tell Sarah stories.  And because it was Kentucky Derby day, I suggested that, if possible, we all wear hats, white gloves optional.  It was great fun.  Many friends made delicious food for our feast and brought champagne to share.  They sprang into action during the brunch and helped serve and open bottles and pour the libations.  And some even stayed and helped me clean up.  It was a grand time.  I thought I would share some of the photos with you.  They are not of the best quality (I didn't have the flash on for most of them, argh!) but they do convey the joy.  My many friends are also a blessing.

Monday, May 23, 2011

Surgery scheduled

I saw Dr. Merati, the ENT at UW who will be doing my surgery.  The doctors and staff at UW could not have been nicer and when I explained that I wanted to have the surgery before my daughter left for her residency on June 7, they spent the morning pulling out all the stops for me to make it happen.  So many, many thanks to them.  It is scheduled for May 31st. 

As always, there is some caution here.  Dr. Merati has done this surgery (the implant is called a 'thyroplasty') over 300 times and he is confident that it will improve my voice significantly.  However, my breathing problems are not a standard presentation--something is not making sense in my reporting of the significant  breathing difficulties I am having upon exertion because most of the video taken in last week's endoscopy, show the airway fairly unrestricted.  So Dr. Merati wants to include  a neck scan in my ct scans as well. One thing that could have happened is that the original Radiesse injection could have moved further down into the windpipe.  In that case, it would be a nasty surprise because it would entail further surgical procedures, so the ct scan should help to determine if that is a problem.  

Dr. Merati was also interested in the fact that at least a year before the cancer was diagnosed, I was having swallowing difficulties and he wants to pin that down a bit better before surgery.  So tomorrow at 9:30 am I am back at UW for a swallow test with Ginger.  This means no food or liquids (including water!) after midnight. I will have to call upon my early  first communion training in the Catholic Church to make it through this privation......

Pre anesthesia on Thursday and a meeting with the speech pathologist on Friday.  It's going to be a very busy week.  More later. 

Saturday, May 21, 2011

Infusion May 19, 2011

My sons went with me to my infusion this past Thursday.  As did my friend Diane.  We played Scrabble.  I, of course, lost again.  But Diane and Seth both had 7 letter scores during the contest which Diane eventually won by 3.  A good time was had by all.

Thursday, May 19, 2011

Happiness is

Two days of sunshine in a row;

My son Seth home for a week;

Dinner with all three kids, my brother Mark, his partner John and John's father, Steve;

Getting a fund raising pamphlet from my alma mater, Macalester College, and realizing that my son is in the featured photograph on the back/mailing page:

Monday, May 16, 2011

Medical update May 16, 2011

A few weeks ago, I noticed that when I was falling asleep, I would whistle.  I, of course, assumed it was a wheezing in the lungs,  In addition, my voice quality took a turn for the worse and then I started becoming breathless upon even minor exertion.  So, based on my complaints, two weeks were spent with first Sarah checking my lungs with her stethoscope and pronouncing them fine and then Jeanette, the physician's assistant in the clinical trial, doing the same.  For a while I though I was losing my mind, or becoming a hypochondriac, but Friday morning, May 6,  I woke up and my first thought was, "It's the vocal cords!"  Which meant either that the Radiesse injection that had been introduced to my left vocal cord  back in January of 2010 had  dissolved, or that my right vocal cord was becoming paralysed because the tumor was growing.  You can guess which one I was hoping for.

I emailed Dr. Martins, my oncologist, and he set up an appointment with otolaryngologist, Dr. Merati at Univ. of Washington.  Unfortunately Dr. Merati's first free day was May 27.  But of course, I whined to Dr. Martins and as a result, I was seen today by Dr. Weissbrodt, an ENT fellow who works with Dr. Merati at the University of WA.  We had a great visit and he did an endoscopy, which is only second to a colonoscopy in my pantheon of least favorite medical procedures.  However, rather than the antiquated endoscope that Group Health still uses, this one was much more advanced--it took and saved pictures to a computer file, so I could look at them with Dr. Weissbrodt after the procedure had, thankfully, ended.

If you may recall, in an endoscopy, the nose is temporarily anesthetized and a narrow, long tube, with a camera at the tip is shoved guided down the nasal passage. Then I was requested to say a long "eee" followed by counting from 1-10 and saying some phrases that engaged the vocal cords.  The final stretch was breathing deeply using my mouth.  That was the 'aha' moment for Dr. Weissbrodt, because when I did it, this is what happened:

Yes, indeed, I am showing you my very own vocal cords, except you can't see them because the muscle that is supposed to power them on the left is completely drooping down, and, in fact, covering my vocal cords AND my windpipe!  My tongue is the big whitish thing at the bottom of the photo, so you can orient yourself.  No wonder I was having spasms when I climbed the hill on Madison from 3rd to 5th at noon!  I could not breathe because of this drooper. 

Here is what normal vocal cords and their musculature look like per Gray's Anatomy without the tongue, which would be normally found at the bottom of this picture covering  the epiglottis:

You can see the vocal cords in the above illustration because both sides of the muscle are toned and upright.  In my case, the  knobby part of the arch on the right (my left) no longer has any tone and as a result is lying down, blocking the aperture of the vocal cords (the ovoid hole in the illustration--you can't see much of it in my photo above)

The first illustration seems upside down as to the words, but that is so the view corresponds to the my color photograph.  The second illustration contains the words right side up, so it is the left corniculate and cuneiform cartilage and the aryepiglottic  fold that are hanging over and blocking the view of the vocal cords and, consequently impeding my breathing.  

According to Dr. Weissbrodt, the loss of the injection into my paralyzed vocal cord can be taken care of in a surgical procedure where they incise my throat and go in and insert a small block to plump out my paralyzed vocal cord again.  With one stitch they can tie up my  drooping cartilage and fold, so it won't flop over and keep me from breathing upon exertion.  It's a one day procedure that is done only under local anesthetic because I have to make noises to help them position the block but I have to stay a night in the hospital because there will be a drain installed.  I've requested that as long as they are going in below my chin, that they pull that up while they are at it.  I will next ask if they can make sure that I will be a coloratura soprano when they get done. 

Hopefully, we can schedule this before my daughter graduates from medical school on June 4 (with academic honors mind you!) and leaves me for a 4 year residency at the University of MN, where she and her brother, Seth, will be sharing an apartment.  Can't wait to visit them!!

Monday, May 09, 2011

Kentucky Derby

This past Saturday was the 137th running of the Kentucky Derby.  The penultimate time I was there was in 1973, when Secretariat won and went on to win the Triple Crown.  It's a little hard to top that, even though I was watching from the infield on a blanket, trying to stay away from the totally inadequate restrooms,  and not wearing a hat or gloves.

My dear photographer friend, Dave, went back and worked the Derby this year.  I don't have any of those photos, but I do have some of his from a Derby in the late '70's.  His parents lived in Louisville near Churchill Downs and there were always large numbers of folks making their way to the run for the roses on the sidewalk in front of Harry and Irma's house.  Which was an  irresistible pull for Dave and his camera. I hope you enjoy them as much as I have over the years.

Sunday, May 08, 2011

LungWalk 2011 a big success weather and otherwise

I'm a week late posting our fabulous LungWalk news.  The very next day after the walk, I had a two day hearing in Everett.  And that combined with my infusion on Thursday and a brunch to celebrate my daughter's graduation from medical school yesterday  had me hopping.

But back to the good news:  DeFeet Lung Cancer was the fifth highest team, raising $1985 for the Lung Association of Washington!  You guys rock!  Thank you ever so much.  Seven of our nine team members braved the blinding sunshine and balmy temperatures, and made it to the walk (we missed you Peter and Spot!).  The circular route around Magnuson took us next to the off leash dog area and I promised Scooter and Truffle that we would come back again to retrieve water balls.

Thanks to my team:

Anne H.
Eric (and Atticus)

And thanks to our generous donors who were with us in spirit:

Anne G.
Ann S.
Bill H.
Janet B.
Lillian and Kim
Dan M.
Pam P.
Olive D.
Diana C.
Leslie Allen

I so appreciate everyone's faith and support.

Now for a bit of news.  Lately I've been hearing a whistling sound when I breathe.  Of course, I jumped to dire conclusions, but my lungs checked out just fine with a stethoscope at the oncologists.  However, the whistling continued, especially when I was lying down on my left side at night.  Took me two weeks to finally figure it out, but I think the  implant that was installed back in January, 2010, has separated from my paralyzed vocal cord.  Hopefully, I will hear from the ENT's office at UW medical center this coming week,  Then it will be on to a bronchoscopy and probably more intrusive surgery on my throat if a repair is possible.  Maybe this time they could give my a chin lift too!  I don't think that's too much to ask.