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. 

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.

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:

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!!

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.

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:

Andrea
Amanda
Anne H.
Peggy
Eric (and Atticus)
Merilee
Peter
Spot

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

Anastasia
Anne G.
Ann S.
Mildred
Bill H.
Janet B.
Lillian and Kim
Kurt
Dan M.
Pam P.
Olive D.
Renee
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.

Two Days to Go!

The Walk/Run for Air is Sunday May 1.  Last year it was on the UW campus.  This year we will be traversing Magnuson Park.  So far we've raised over $1800 for the American Lung Association of Washington!  Yay team!

I'd like to thank the following friends who have sponsored me and our team, DeFeet Lung Cancer this year:

Kurt J.
Diana C.
Olive D.
Katy K.
Anne G.
Bill H.
Mildred W.
Renee L
Anasasia S.
Ann S.
Cathryn
Janet B.
Pam P.
Chandler F.


And my team members who will be walking with me:

Anne H.
Merilee B
Andrea T.
Spot
Peter K.
Eric P.
Amanda G.
Peggy J.


There is still time to sign up to run/walk or to donate to the cause.   Thanks so much for all of your support.  It is truly treasured.

Ok, I cannot resist posting this picture.  It gave me a laugh for the day:

Mixed Blessings

Today is Maundy Thursday.  Maundy derives from the Latin word, mandatum, which means command.  I've  used another form of mandatum in my law practice when I've prepared a writ of mandamus to file with a court, requesting that it command the doing of an action. 

In Middle English maunde signified the ceremony of washing the feet of the poor, which also came from a part of the last supper. However, the more important connection to mandatum is found at John 13:34  in the New Testament, where during the last supper, Jesus gave the disciples a new commandment:  that they love one another as he loved them. 

I was able to receive the clinical trial infusion today, but it did not come without sorrows.  The rash was the first issue.  It has cleared up significantly, but it was a rash that grew over time, and as a result, what the doctor is concerned about is that it could begin to regrow and perhaps even require hospitalization if it were to fully cover my body and extend into my mucous membranes.  But, of course, this is an early stage trial and they can't predict how it would behave.  Having survived the rigors of a Tarceva rash, it was a no brainer for me to brave the unknown here, even though when Diane asked Dr. Martins what he would do, if it were him, his response was that he probably would not do the infusion.  But, he qualified, he couldn't really say unless he was truly in my shoes.

The second, and more serious issue is that my tumors, according to the clinical trial radiologist back at Bristol Squibb Myers, have grown 21%.  The cut off  for participation in the clinical trial is 20% growth.  The UW radiologist, who initially read the ct scans after they were taken last Saturday, opined that the tumors were stable. And it seems that they have only grown by 5% if you look at the comparison:

Mediastinum: Necrotic mass in the aorticopulmonary window is stable in size, measuring 3.6 x 4.1 cm, previously 3.5 x 4.1 cm. Stable right hilar lymph node measuring 1 x 1.2 cm (4/31).


Lungs: Left lower lobe posterior basal segment pleural-based nodule is stable in size currently measuring 2.3 x 2.4 cm (4/57), previously 2.5 x 2 cm.

But the baseline are the ct scans taken in January, and I don't have copies of those to use in my layman's math calculation.  I have requested copies and we shall see.  If the tumors continue to grow on the next set of ct scans, I will be dropped from the protocol.

The problem is, if I drop off this clinical trial, there aren't many options for treatment left to me.  Avastin, is a drug which might be a possibility.  It operates by killing new blood vessels, and thus starving the tumor.  But it is only indicated as first line treatment for lung cancer, and I would be on my fifth line treatment at that point in time.  Dr. Martins said that there is a similar drug that is administered in pill form that has shown some great promise but I would have to petition my insurance company to pay for it, as it is not a recognized treatment.  The cost for the pills is $6,000 for a month's supply.

So with all this to think about, I went to my church's Maundy Thursday service and heard the command to love one another as I have loved you.  Brave words that I am coming to better appreciate in their context and in mine.

Ain't too Proud to Beg

No word yet on the ct scan results.  I will send an email to Dr. Martins later today, after I am done pretending to be an appellate judge at Seattle University for their moot court.

In the meantime, if you haven't signed up for the Lung Walk on May 1, please do so.  We've raised almost $750 for a great cause.  Six folks have signed up to walk with me.  And even if you can't come, consider donating.  My team is DeFeet Lung Cancer.  You can sign up at http://www.lungseattle.com/.  Be sure to indicate that you are part of DeFeet!  Thanks so much.

Ct scan Saturday

My daughter, Sarah, the saint, went with me today to my ct scans.  She kept me in good humor with her teasing then we came home and finished the first season of Glee together.  A wonderful mother/daughter bonding experience.  Now comes the wait for the radiologist report.


As we do, I invite you to watch this video.  It is a veritable mindbender, the combination of two very different genres, but incredibly moving. Please double click on the screen to get the full effect :







Thanks to Cat on the Dunnett openforum yahoo list for the recommend.

CT scans moved up to this Saturday am

My next ct scans were scheduled for April 20th but in view of the fact that I was taken off the clinical trial, they have been moved up to, hopefully, show that the experimental drug, while rash inducing, is also killing the tumors.  We can try and use that as a lever with the folks at Bristol Myers Squibb.  If the tumors are growing, however, all bets are off and it is back to the drawing board to pull a 5th rabbit out of the hat.




So fingers crossed, as I mentioned earlier on Facebook.

A setback

They postponed my infusion today.  My rash has increased and covers about 70% of my body and lacking anything else to blame it on, the protocol for the clinical trial requires this.  So I've been prescribed a pound of corticosteroid cream and told to use it twice a day all over. They've moved up the ct scans to next week sometime.  So we're back in limbo.

Snarky Saturday

Somedays, Stephen Colbert is so ON.

The Colbert Report
Tags: Colbert Report Full Episodes,Political Humor & Satire Blog,Video Archive

Another Sweet Dog Story

The amazing Skidboot.

Lily

My brother, Mark, does not have any children.  However, he has two dogs, Lily and Daisy, Jack Russell Terrier mixes and both rescues.  These are his children.  Because Lily was a rescue, she is very shy around anyone other than Mark, or his partner, John. 

Several weeks ago, one Thursday morning, John was walking both dogs in downtown Seattle near Western and the viaduct, when they were set upon by two other dogs, whose owner could not hold them back.  Both Lily and Daisy slipped out of their collars and went running.  John was able to grab Daisy but  his last sight of  Lily was of her running up the off ramp to the viaduct and heading south. That would be the lower level of the viaduct, which is  pictured below being repaired after one of our earthquakes:

John called Mark in a panic.  Mark was at work in the operating room at the hospital  (he's an anesthesiologist), and Mark found a physician to sub in for him, and he and John went searching for Lily on the viaduct.  Someone had seen her heading off to the industrial part of Seattle south of downtown, so they, together with neighbors and relatives from John's side of the family, began a sweep of SoDo that lasted Thursday, Friday and part of Saturday.  I had just returned from Hawaii and had just had an infusion, so was not able to help in the field.  As a result, I participated by assisting Mark by putting an ad with a very generous reward on Craig's List, and by listening to both Mark and John as they went through this very traumatic event for them.  It is a very desolate area where Lily was thought to be, with 16 wheelers all over the place,  and dozens of railroad tracks blocking traffic.  But the group was indefatigable, placing signs, knocking on doors of warehouses, factories, and even a sweat shop once!  Mark and John were in the industrial part of Seattle  at 3am both Fri and Saturday mornings.  And then getting up at 5 or 6 am afterwards to resume their search.

On Saturday, Mark increased his already generous reward on Craig's List five fold.  And then at 11 a miracle happened.  A young man, on his way to Tully's (the old Rainier brewery) on the west of I-5, saw an exhausted dog shivering on the doorsteps of a vacant office building.  He took this picture with his phone camera:

He went up to the very tired, cold dog, whose front paws were shredded, and put his jacket over her to warm her up.  Then he fashioned a collar and leash out of some string he had in his backpack and he and the dog went to Tully's where the dog could further warm up, and he could meet the friends he was planning to meet and get some coffee.  He called his wife and texted the dog picture to her.  She went online to Craig's list and found my brother's ad with his picture of Lily and said, "I think I found the dog."  She called my brother's number and Mark and John zoomed down to Tully's to a very jubilant and tearful reunion with Lily.  It was just incredible.

The couple was very kind.  They were the loving parents of  a rescue dog themselves, and insisted that they didn't want the reward, but my very stubborn brother was having none of it and he wrote them the check for the full amount.  Which was truly serendipity because this was a young couple living in a one bedroom apartment in Ballard, and it seemed that they not only deserved the reward but that they could use the money.

So that Saturday evening, the guys held a champagne celebration for Lily in their house on Perkins Lane, and all of John's relatives and all their neighbors who assisted in the search came over and toasted Lily's return. 

I had a nice conversation with some of their neighbors and, as it does oftentimes with me, we discussed modern day politics.  And to no one's surprise here,  I have very definite opinions on things and was quite free with them.  Well, it turns out that the one of the persons I was talking with works for the Ninth Circuit Court of Appeals.  As a Judge.  Well....  Good thing I practice in state courts. 

His wife raises black labs, so they too, are dog lovers and it turns out that one weekend evening when he was out of town, she was walking one of their labs on the Magnolia bluff and her dog fell over the bluff and was caught in the branches of a tree.  She called Mark and John and they lowered Mark on a rope so he could grab the lab and they pulled them back up the bluff.  She said she felt, that in searching for Lily, she was only returning the favor.

The candle of the heart

I found the following, written by Joan Borysenko, an MD and psychologist, today and wanted to share:

“You are at my side, dear friends, and God is everywhere. Yet ultimately we are alone, making our way home by the candle of the heart. The light is steady and sure but extends only far enough to see the next step. That there are steps beyond is a matter of faith. That we have the faith to endure and walk our own journey-even when we think that we are lost- is a gift of grace, and of friendship. Many times our light seems to go out. But another light, one held by a stranger or a friend, a book or a song, a blackbird or a wildflower, comes close enough so that we can see our path by its light. And in time we realize that the light we have borrowed was always also our own. ”

Updates, Updates

I had my latest infusion Thursday.  It's really not chemotherapy because the experimental drug, MDX 1105, is not cytotoxic, i.e. it does not kill cells.  Again, what it does, is rev up my immune system so that it becomes aware of the cancer and attacks it like it would any other invasive foreign body.  After initial blood tests and meeting with the trial manager, I went to my assigned  'princess room' (so called by the nurses because it's a separate room, not just a reclining chair cordoned off by curtains) at the clinical trials unit and had the infusion.  It took 2 hours, one for the infusion and a second hour to monitor my temperature and blood pressure.  Everything went well, and other than my usual spring allergies and a most attractive upper body rash, I seem to be in good physical health.

Hawaii Update

The house that I stayed at with my friends is located on Kealakekua Bay on the west side of Hawaii, the big island.  That bay, which is the location of the Captain Cook monument, was hit by the tsunami from the March 11, 2011, Japanese earthquake.  The pictures I saw online showed houses that had fronted on the ocean like mine, buckled in half and one was completely torn from its foundation and pulled into the bay where it floated before sinking. 

My friend, Tim from Honolulu, took his sailboat out of the marina once he heard the tsunami was coming, and went out into the ocean where he stayed all night and part of the next day.  He and his boat made it, and his current marina weathered the tsunami, but the marina where had had kept his boat last year was almost completely wrecked. 

I worried about what had happened to our beautiful vacation home  for about five days, and finally sent an email to the vacation rental company inquiring.  I heard back from the daughter of the owners of the property, who live in California:

Dear Regina;


Thank you for your thoughts. The house was untouched- a miracle- but there were homes near Kealakekua bay that were swept into the bay. There is a big cleanup effort to help the marine life there. Thank you for your prayers. If you could write a brief comment on VRBO about your stay at the house, that would be great. Please ask Tim as well.


Dad had a heart attack and is at home recovering and Mom just fell a fractured her wrist. We never rented the house out until last year. We are trying so hard to keep it rented to great people like you to relieve the costs (i.e. like the tsunami insurance.)


Best Shelley

That was a relief.  Maybe I can return next year.  One of my best vacations ever.



Proposed Change to the Presbyterian Book of Order to permit ordination of gays and lesbians

The Seattle Presbytery met and voted on the proposed change to the Book of Order which would permit the ordination of gays and lesbians on March 15, 2011.  I was one of three voting delegates sent by my church.  The meeting was at Steel Lake Presbyterian Church in Federal Way, so the three of us car pooled after work to make it to the meeting. 

I would like to report that the change passed in our Presbytery, but I cannot.  There were two hours of impassioned discussion by elders both pro and con.  The majority speaking against the proposition were male, and many were about my age.  Although I wanted to speak, I felt constrained by my lack of voice and instead, uncharacteristically. sat mute.  However, while sitting there I reviewed  the New Revised bible tucked in the pocket of pew ahead of me.  As a speaker railed about how he was constrained by the word of God as revealed in the Bible to vote against the measure, I found this passage in the New Testament, in the sixth chapter of Luke and wondered how the Presbyterian church had been able to wriggle out of the plain wording of this direct quote from Jesus:

18 ‘Anyone who divorces his wife and marries another commits adultery, and whoever marries a woman divorced from her husband commits adultery.

I wanted to ask all the literalists, how many of them were divorced. 

And then again, I wondered how they reconciled their positions with this statement from Second Peter:

18 Slaves, accept the authority of your masters with all deference, not only those who are kind and gentle but also those who are harsh. 19For it is to your credit if, being aware of God, you endure pain while suffering unjustly. 20If you endure when you are beaten for doing wrong, where is the credit in that? But if you endure when you do right and suffer for it, you have God’s approval. 21For to this you have been called, because Christ also suffered for you, leaving you an example, so that you should follow in his steps.

It is not so long ago that women were finally able to be ordained as ministers in the Presbyterian church.  Perhaps that is why many of those speaking in favor of the change to the Book of Order were women.  The final vote was 124 to 106 or something like that.

However, nationally, the measure appears to be headed for approval.  If so, I expect that the Presbyterian Church will split again, probably along the lines that they split over slavery during the Civil War.  Although the largest Presbyterian church in my Presbytery, University Presbyterian, seems headed that way, if their ministers have anything to say about it.  What continues to perplex me is how many of the members of that church seem not to have been informed of this by their leadership. 

Luke, chapter 5:

37 ‘Do not judge, and you will not be judged; do not condemn, and you will not be condemned. Forgive, and you will be forgiven; ³⁸give, and it will be given to you. A good measure, pressed down, shaken together, running over, will be put into your lap; for the measure you give will be the measure you get back.’

Staying the Course

I usually can manage to deal with what life throws at me.  But it's much harder to be a rock when my children experience adversity or disappointment.  As someone much wiser than me said, "You're only as happy as your least happy child."  It's been a bit of a tough week.

DeFeet Lung Cancer--the 2011 version

What began as a lark last year turned into a very fun event.  And quite humbling too, when they totaled up all you donated to the American Lung Association of Washington for our team:  DeFeet Lung Cancer, we finished in second place for the most money raised for an individual team, raising over $2,000!

I hope that those of you who participated last year walking, or jogging will do so again.  And I would love to see lots more of you out there.  It's on a Sunday this time--May 1, 2011.  So fingers crossed that the weather will be a bit better since we're starting later in the spring.  And if you can't make it to Seattle for the fun and celebration, well... you can still donate.  You can go to this page and click on the  "join a team" or "donate to a team" button and then find DeFeet.  I'd be happy to put up any guests who might come in from out of town.  The dogs would love to see you.  The dachshunds, at least, will be there for the walk this year, which will be held at Magnuson Park, rather than UW.

It should be a great time!  And don't forget, we all go to brunch afterwards!

Thank you so much for your support.  There are so many pressing needs these days and for most of us, we are trying to make do with less.  We just do what we can do and hope to make a difference.  I'll keep you updated on the team progress.

That which was lost is found

Last night while I was grocery shopping, my brother called me to tell me that Aaron had called home and his parents were overjoyed.  What a wonderful story, one bright spot amid the horror and suffering in Japan.  KING 5 did a story on the Strussman's ordeal before Aaron's call. 

And the bizjournal did a story afterwards.

Thank you all for your kind thoughts and prayers during this very stressful time.