I am thinking I want to see this movie

http://www.imdb.com/video/imdb/vi727620889/

I am also thinking I'd like to see what Roger Ebert has to say about it when it comes out.  He is one of my heroes.

Quick Update--Still in Clinical Trial

I spoke with my daughter, the med/peds resident in Minneapolis, last night.  She was much more sanguine about the renal lesion and said that they are quite common as non cancerous growths.  And, during our conversation,  I remembered that the traditional metastatic growth path for lung cancer is lungs, liver, brain bones.  Not kidneys. 

I met with my oncologist this morning.  At first Dr. Martins recommended terminating the clinical trial because there continued to be progression in my tumors' growth.  In response I noted what Sarah had told me about renal cysts and that I had an ovarian cyst that seemed to be non cancerous as well.    I mentioned the pathway that lung cancer normally takes, and he conceded that kidneys were not part of that.  Then, I asked him if it were possible that the progression of my lung cancer could be slowed down by the clinical trial, and  might rev up if I go off.  He said that that was a possibility.  Finally, he said to think about it this way--if in 6 months I felt the same overall as a I do now--would that be a good thing for me?  I said yes, I thought it would.  So the clinical trial folks were contacted back in New Jersey, and they said it would be a discretionary decision on Dr. Martins' part. Given my discussion with him and my feelings on the matter, he agreed to continue with the clinical trial.

We have nothing really to go on at this point other than my intuition that this is the path to take.  But I am willing to take the risk.  In addition, the clinical trial manager noted that according to my blood tests from two weeks ago,  my thryroid gland has  been working in overdrive but not producing the hormone needed.  This has been a side effect from the monoclonal antibody in other participants. Today's results confirmed the thyroid imbalance,  so I am being prescribed synthroid.  One symptom of low hormone production, I was told, is hoarseness.  So there is something to consider as a possibile cause of my continuing hoarseness while speaking that might have nothing to do with my surgery two months ago. 

So, while I don't know where this is ultimately going, I am feeling much encouraged.  And thanks for all your good wishes yesterday both on the blog and privately.  They really helped.

Not so good news

It appears that some tough choices will be made tomorrow.  The ct scans essentially showed that the old tumors are either dead or stable, but there is a renal abnormality that my oncologist thinks is of questionable significance but is enough to (a) be a cause of concern about metastasis and (b) probably sufficient to toss me out ot the clinical trial.

Here is the read from the radiologist's report:

Kidney: There is a round hypodensity in the right kidney seen on
image 4/78. It measures 8 mm in diameter, compared to 6 mm in
diameter from the previous study of May 28, 2011. On the study from
March 8, 2011, there is a renal lesion measured 2 mm. There is
progressive growth makes this lesion suspicious for metastatic disease.

I should find out tomorrow about the clinical trial.  If I can no longer participate, it is unclear what, if any alternatives remain.  This is my fourth line treatment.  There are very few options remaining.

Fingers Crossed for July 25th

My next ct scan is July 25th.  Here's hoping that the tumors have not grown so that I can remain in the clinical trial.  This article about how easy it is to misread ct scans in estimating tumor sizes is not helping me stay sanguine.

It's been a quiet past few weeks.  Even though Seattle has  only had 18 hours of 70 degree + weather all summer, it still has been a busy time with gardening added to the mix of things.  My backyard is loving the weather no matter the temperature and I've become quite the digger and weeder.

However, came down with a summer cold the end of last weekend, courtesy of my son.  When you are teaching small kids how to swim and life guarding at a pool, as he is, it is normal to come into contact with lots of virii, so this  is not unexpected.  But the severity of the coughing is surprising, and as a result, I've taken a few days from work to recuperate.  My voice has been affected as well and it seems I am going backwards rather than forward.  Part of the problem is that in order for me to achieve resonance with my new speaking voice, I can no longer speak in low tones--I must raise my pitch up to a girlish cadence.  And there is nothing I hate more than sounding like Lisa Simpson.  So I am fighting this, and the end result is that my voice continues to resemble Marge Simpson's instead.  Not much better, eh?

Something else that I didn't learn until weeks after the thyroplasty is that the scar tissue at the incision site is adhering to the scar tissue from the incision into the windpipe below it.  So I have this rather unattractive indent in my neck which makes the skin around it droop even more.  Sigh.  Any delusions of beauty are gone these days.  One of the signal aspects of aging is that you become more and more invisible in society as youth fades.  I just wish there was a corresponding rise in being taken seriously.  But not with this voice!  I'll just have to go Greta Garbo and not say much.

The Blue Walk--on the Riviera in SE France

I have a dear friend, Carlo, who I used to work with in the AG's office.  We did travel fraud cases together.  She would put together the arbitration/mediations as part of settling with companies that I sued for violating the Washington Consumer Protection Act and the Travel Sellers' Act.  She was very, very good at this.  But, unfortunately, both of us eventually went our separate ways and she is now based in San Diego with her own travel agency.  One thing that she and I shared was a love of things French--in 2002 she found a tour for me where I went to the Languedoc region of the country and spent a week with my friend Mary Pat, hiking the back country, getting lost and finding our way back to where we were to meet our taxi by the end of the day and eating good food and drinking good wine.  An experience that is worth writing about at some point.

But the point today is that Carlo has a new venture out called The Blue Walk.  It is a one week guided or self guided (for a little bit less) tour of the French Riviera from the Italian border to Menton.  You are based in a lovely 3 star hotel in Nice and travel out each day to a new site to hike and enjoy all that the area has to offer.  And if you are like me, and can't read a map very well, you would probably enjoy the guided tour,  since you don't have to worry about getting lost.  In addition it comes with a 7 day French rail pass, so you can walk as much or as little as you want at the various stops--typically 3 hours a day,  In the sun, next to the Mediterranean.  With all that great French food and wine.  What could be better?  There are two hikes in September that have openings, if any of you are interested.  I can highly recommend Carlo as a wonderful and entertaining guide and host.

I hope to go next fall and if there are any of you who would like to go with me then, please let me know and we can make plans.  But do, please, check it out.  It is a memorable vacation.

http://cruisetourtravel.com/the_blue_walk

Cancer Grace and a new paradigm for cancer treatment

Dr. Jack West, oncologist at Swedish Medical Center in Seattle, has a wonderful Ted.com broadcast up on YouTube about becoming an educated cancer patient and participating in your own treatment.  I urge all of you to take a look:

Off to visit my mother

I am leaving tomorrow for a 5 day visit to Lexington, KY.  Mom is 87 so one never knows when the next visit will occur.  Travelling used to be such fun, now it is something to be dreaded.  I realize that the government is trying to keep us safe but there has to be a better way to screen for terrorists. 

I wish I could say that the surgery has been an unqualified success but my voice, while somewhat better, is still quite faint and raspy.  I had a hearing today and at the conclusion I was given leave to file my closing statement in writing rather than try to talk because I had just about exhausted it.  Good discipline for paring down my questions, however.

I had an appointment last week with Dr. Merati and his residents and learned that it may take as long as 3 months for the swelling in my vocal cords caused by the operation, to go down.  Who knew they were this sensitive? The swelling not only interferes with talking, it makes breathing difficult still, although it is not a spasm, but more of a sustained obstruction when I inhale upon exertion.  I am supposed to learn how to breathe better when I next visit the speech therapist, so am hopeful that some of this will resolve with time and better breathing.  Imagine that.  All these years and I could have been doing it better.

So Bon Voyage and talk with you when I get back!

Science project--why organic.

Mad props to Nancy Nall for posting this on her must read blog. 




I have had so many friends diagnosed with cancer recently, I can't help but wonder about our indirect consumption of chemicals as a catalyst.

It's a Beautiful Day

Yesterday, June 4, 2011, my daughter, Sarah Alice, graduated from medical school.  It was a perfect Seattle summer day--no clouds and the temperature was in the high 70's.  On days like this, you forget the previous 6 months of dark and rain and simply live in the moment.

Graduation was at Hec Edmundson Pavilion at 10am and, of course, Sarah had to be there at 8:30, so Matt drove her down and I struggled  dress and remember everything.  Camera?  check.  Cell phone?  check.  Ipod?  Check. Flowers?  Oops.  So after Dan, Sarah's boyfriend, showed up and Matt was ready, we stopped and got purple and yellow roses to give our new doctor after the ceremony.

Raced into Hec Ed, picked up a program, found some seats and opened said program.  Discovered that Sarah was not only honored as the ACP Outstanding Internal Medicine Student from Washington state and for her membership in Alpha Omega Alpha, but that she had been conferred  the Georgiana Kirby award.  Given by the friends of the University of Washington, the Georgiana Kirby award "is awarded to the graduating medical student who has demonstrated outstanding dedication to his or her studies and clinical work, and has shown the compassion for patients that is embodied in the ideal physician."  Each of the 267 graduates was called by name and came up to receive their hood and diploma, as their achievements and residencies were announced.  I should have had a noisemaker app attached to my IPOD because I could not yet make any sort of sound, other than vigorous clapping when Sarah's name awards and residency was announced and both Dan and Matt were too shy.  I thought of all the days I had spent at the sidelines of her soccer games and swim meets, yelling at the top of my lungs, and I guess Sarah was probably grateful for the the temporary loss of voice.  Ah, but it used to be so much fun...

Lots of pictures with family and friends outside afterwards.  Lots of hugs and some tears.  The sun actually started baking us, and Sarah was roasting under her robe, green hood and squashy cap.  So she decided that she did not want to go to a restaurant for celebratory brunch,  but instead wanted to go to the pool.   We went to Metropolitan Markets and picked up picnic lunch fixings, went home and got ready for the pool.  Had lunch at home so we could polish off a bottle of champagne and then spent several relaxing hours in the sun with the familiar splashing and other water noises, basking in the sun and talking with friends.  Every so often, I'd get a question, "You know what, Mom?"  "No, what, Sarah?"  "I'm a doctor now!"  So everything that she did the rest of the afternoon became anchored to that new fact, including her pickleball and basketball victories.  Life does not get much better than this.

About 5:30 we closed up shop because she and Dan had to go out to dinner with her father and his wife.  Matt and I had tickets to the U-2 concert at Qwest Field.  I'd purchased them a year and a half ago, but the concert was postponed last June because Bono had unexpected  back surgery. 


The trip downtown was uneventful and we found parking in the International District which meant a brisk walk to Qwest field in the sunshine.  Our seats were up in the third level, southeast side, but in the front row.  At one point we had an usher come iover and tell us we were in the wrong seats and made us move, but when we got up a level he admitted his mistake and gave them back to us.  After that things settled in very nicely.  Our seatmates welcomed us back warmly and our  neigbors to the south collected everyone's favorite songs so we would know who to cheer and point to when they came on.   Matt's was "Sunday Bloody Sunday" and mine was "Better than the Real Thing," which is not part of their canon.  Both were played and mine was the first song of the concert!  Began well and just got better as the evening wore on.  This turned out to be the emotional high point of the evening:




Absolutely one of the peak days of my life.  

Three Days Out from thyroplasty (vocal fold surgery)

Tuesday, May 31, at 5:30 am, my daughter and I were in line at the Surgical Pavilion at the University of Washington.  Check in went quickly but I was pretty tired  because when the nurse asked what kind of surgery I was going to have, I responded "thoracotomy" rather than "thyroplasty."   Sarah will never let me live that one down.  Sarah went with me to pre-op where I donned yet another flattering hospital gown.  The anesthesiologists came by to chat and install an iv line on the top of my left hand.  One of them told me an anesthesiologist joke:  How can you hide $100 from an anesthesiologist?  Hide it anywhere in the hospital after 3 pm.

At about 7:30 I was wheeled into surgery.  It was a room crammed full of monitors, machinery and all sorts of things.  I had somehow thought that surgeries were sterile, empty spaces.  Not so.  I was shifted over to a narrow surgical table and given a donut pillow for my head and a horizontal one under my knees.  They draped me for surgery, which consisted of dropping a shower curtain down from the ceiling and sticking it to my chin, so I could only see directly above me. Then they injected the anesthetics to numb my neck so they could cut me open.  Two residents did all the grunt work with the incision--they stood close to me to make sure that I could not move during the procedure. It was actually a nicer experience than had they used a straight jacket approach.

Several times I felt whatever it was that they were using to make the incision.  To me, it felt like my neck was being sawed with a rotating bendable, wire brush, so I hollered, and they gave me more good drugs.  I had to stay awake  during the entire procedure, because I had to vocalize so they could make the proper placement of an implant that was just the right size.  So what would happen is that they would put in the implant, have me say "eeee"  or count to five, or hum, and then take it out and work on adjusting the size and put it back in and work on positioning it.  Eventually Dr. Merati stepped in a fine tuned the size, shape and positioning and we were done.  The two residents sewed me back up, chatting about the number of weddings they were scheduled to attend this summer, which was a rather interesting experience to actually be the chopped liver at the time!

It turns out that the cartilage in the vocal fold area was extremely soft, making it difficult to size and adapt the implant.  There's a system out there that uses pre molded implants, five different sizes, and I had asked Dr. Merati about it before surgery.  So in the middle of my surgery he remarks to me, "This is why we can't use the Montgomery process." 

If you are really interested, you can see a thyroplasty surgery here.  My surgery lasted probably 2 1/2 hours, a bit longer than usual, because of the softened cartilage.  Dr. Merati told me in a phone call yesterday that my cartilage was the softest he had ever dealt with, and probably was a function of the radiesse injection a year and a half ago.  He sent a piece of the cartilage out for analysis but there was nothing unusual found from the sample. 

I spent the night in the hospital and was discharged before noon on Wednesday.  Went home and slept most of the day, so I could go to Sarah's medical society honorary dinner at the faculty club that night.  It was truly a wonderful experience because before each of the new members were given their certificates,  part of their nomination applications (which were written by faculty and peers) were read.  Each one of the new members was terribly impressive.  I was sitting next to the featured speaker, a pediatric cardiologist from Rochester, NY, and she murmured that she doubted she would have made it these days given the achievements that were noted.  Truly a humbling experience. 

Along the way, I dropped wearing a gauze bandage over the 3 inch incision--it was too rough.  So what if I look like Bride of Frankenstein with those ugly ass black stitches on the front of my neck?  Like my father used to say when I was in tears over a botched haircut, "At least I don't have to look at it."  Funny how I now rather enjoy that saying, when I used to hate it so much.  We'll see how many double takes I get at Sarah's graduation tomorrow.

Yesterday was supposed to be an infusion day--the ct scans showed the tumors either had not grown or were shrinking a small bit, but the clinical trial managers back east decided because of the thyroplasty surgery, that I had to wait for two weeks.  I hope that doesn't give the tumors a new lease on life, so to speak.

My current voice is really rough, but that's in part because of the swelling occasioned by the surgery.  I'm having a bit of a problem swallowing as well, which I also attribute to edema.  But the pain, which was significant the first day, has largely disappeared.  I'm  just glad I never got that thoracotomy (which is the removal of part of one's lung).

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.

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.