Friday, December 30, 2011

Endoscopy results in

I had the endoscopy today.  I don't have the written report, but the Gastroenterologist told me afterwards that I have a stricture in my esophagus caused by something pressing on it.  Probably the tumor.  Normal diameter for an adult esophagus is 2-3 cm.  At the stricture, the diameter of my esophagus is 1 cm.  So at least we have an explanation for the problem.  I think that they took some tissue samples to biopsy from the duodenum (the upper part of the intestine that a colonoscopy does not get), but I was still coming out from under the anesthesia, so my memory is somewhat fragmentary.  The doctor also discovered that I have a thrush infection in my esophagus.  No idea how long it has been lurking there.  I am on an antifungal to try to eradicate it. 

Most likely will have a stent put in to open up the esophageal stricture next week.

Going home?

My paternal grandmother, Helen Fauster Cullen, died in 1994.  After her death, my parents sent me a number of items from her estate.  One of them was a beaded evening bag which her husband, Seth, had sent to her when he was in France, serving with the US Army during World War 1.

Sometime this past year I was going through my dresser and happened upon the purse, which was tucked under some sweaters.  I pulled it out, took it out of the plastic dry cleaning bag and discovered my grandfather's dog tags from World War 1 along with the identification tag of a German soldier:

One side reads (I've put "_" where I can't read the lettering):

Joh. Brandl
Genes.Kp. No.355
BAY.P.I.R 15. G.V.KP1.
1.K. 1211.NR.39

The other:

1.K.NR.1211 *NR.39

I showed this to my friends, Barbara and Joseph, and Joseph remarked that the scoring in the middle of the tags was so they could break the bottom tag off and send it in, while keeping the upper part on the body.  The Americans took care of that problem by issuing two tags for each soldier.   
I have no family stories that go with Joh. Brandl's tag.  It was a huge surprise to find it after all these years.  My grandfather, Papa Seth, died when I was 7 or 8, so I never talked with him about these sorts of events.  The only story that I have from that time comes from a letter:
When my Great Aunt Bebe (Bernice Cullen Sullivan) died in 1981, I went back to Paulding, Ohio, for the funeral.  Aunt Bebe was Seth's only sister, and she lived in the family house, across the alley from my Grandmother.  They were very close.  I had the opportunity to go through boxes and boxes of photographs, clipped newspaper articles, and letters that had been saved by Bebe's (and Seth's) parents.  In the letters, I found a few written by Seth to his mother and father while he was in France during the Great War.  My most vivid recollection from the letters is that he wrote about how he rode on the running board on the outside of an ambulance, so he could tell the driver where to go at night. The ambulance could not use its lights because the illumination made it vulnerable to a German attack.  I gathered up the letters Seth had written and gave them to my grandmother, thinking she would save them.  She did not, and they were gone by the time she died 13 years later.

Seth Cullen (l)  and unidentifed friend WW1
I wondered if this tag needed to go home and whether it could be reunited with  the family of Joh. Brandl after  all these years.  I asked my online lawyer friends at Delphi Forums what they thought, and several had good ideas.  Scot suggested contacting the German consulate.  I discovered that although there had been one in Seattle, it was now closed.  So, I emailed the German embassy in Washington, D.C. this week asking what I should do with Joh. Brandl's  tag.  This is the response I received this morning:
Dear Mrs Cullen,

on behalf of the German Embassy I thank you for your request regarding the identification tag of Mr. Johann Brandl.

I recommend to contact the following government institution:

Military History Research Institute
Zeppelinstra├če 127/128

D-14471 Potsdam

Phone : +49 (0)331/9714-0

Fax : +49 (0)331/9714-507


Or visit their website at:

Best regards

Klaus Schepers

B├╝roleiter MilAttStab

Botschaft der Bundesrepublik Deutschland Washington

2300 M Street, NW, Suite 300

Washington, D.C. 20037

Tel.: 001-202-298-4299

Fax: 001-202-298-4321

I've emailed the Military History Research Institute and am awaiting their response.

Wednesday, December 28, 2011

Going Bovine

I dislike posting unless I have an answer to the question, but I will make an exception here.  For a period of time I have had trouble in keeping food down.  It was sporadic and, to me, unpredictable.  I would swallow and somewhere along the way it would get stuck.  I'd would begin coughing and it would either free the obstruction or bring it back up, and I would swallow again and it would go down.  I thought that I was becoming a cow, occasionally chewing her cud.  But over time it has become worse and late Sunday night after returning from visiting my kids in Minneapolis for Christmas, I found that I could not keep down even one bite of mashed potatoes and pot roast.  It was rather concerning as I had a hearing on Monday and I didn't want to be there light headed, but even Monday I could not keep the banana bread down unless I nibbled it--so not enough time to finish before the hearing began.  Same thing during lunch break with a chicken pot pie.  So I subsisted for the rest of the day on butter rum Lifesavers.

I emailed my oncologist late Sunday night about this and spoke with my daughter about it after I got out of the hearing.  She thinks that the mediastinal tumor may be growing and pressing in on the esophagus.  I emailed her thoughts to Dr. Martins, and he responded Monday evening that he agreed with Sarah and will be scheduling a endoscopy asap.  If this proves out, I will have a stent inserted into my esophagus to open it up.  In the meantime, I will dine on soups and smoothies and try to chew my cud contentedly. 

Monday, December 19, 2011

Checkup Time

I saw my oncologist last Thursday.  Man, I hate those 7am appointments for a blood draw!  All these years and I am still not a morning person.  But the news was pretty good.  The abscessed lesion on my back that was removed earlier this month, was not cancer.  Hooray!  Just some other skin disorder.  My blood counts were normal in every particular and despite my grumbling about the swollen node in my neck, Dr. Martins doesn't think it has grown any.  So there you are.   He says I have an indolent tumor.  Happy to have that.  Let's hope it goes to sleep.  For a long time.

And if you haven't seen this presentation, please check it out.  Color coding for cancer surgery.  It's 16 minutes but well worth your while.  Among other things, you will learn why surgeries are scheduled so darn early.  And I thought lawyers were the hidebound traditionalists!

Off to Minneapolis this Friday for a quick holiday visit with my children.  Season's best wishes to all of you!

Sunday, December 04, 2011

Wednesday, November 30, 2011

Regina and Claude Frederick Holst's wedding/honeymoon diary

My maternal grandparents, Regina and Claude Frederick Holst, were married on June 19, 1920.  He was 46, she was 24.  If you may recall, they met when Regina was the director of nursing at St. Gabriel's Hospital in Little Falls, MN and Dr. Fred ( who I will refer to as Claude hereafter) was a physician there.  I will let my grandmother take up the story from a typed two page memoir that I had in my files but had forgotten about.  As this was written many years after the wedding there are some discrepancies with names, which is to be expected.  The parentheses are Regina's, the brackets are my editorial comments.

"In 1918 I felt the nursing school was well established and some of the sisters could relieve me.  I felt it was my duty to join the Navy and give my help to Uncle Sam.  Regina White R.N. was director of Nurses in Milwaukee so I enlisted with her.  While waiting for my call I accepted a position with the Milwaukee health dept. and was assigned the East Milwaukee District as inspector of Schools.  It was at that time the Flu (Asian) became epidemic and I became very ill and had to give up my work for a time.  Peace was declared on Nov. 11th 1918 before I received a call to the Navy.

In the meantime Sr. M. Rose who was administrator of St. Francis Hospital in Breckenridge Minnesota, urged me to go to the Breckenridge Hospital and do the same work to accredidate the Hosp. as I did in Little Falls  at a salary of $100.00 and room and board. I accepted for one year only as I already had planned on getting married in June.

Foxhome Tornado in late May delayed our plans.  The storm came with fury just at supper time and word came that I, with as many nurses as could be spared, should be ready to leave at once for the stricken ones.  A special train was being run for us to take us to Foxhome.  The train was blown off the railroad tack and many passengers were injured lying in a pool of water.

We gave them temporary first aid until we could transfer them to St. Francis Hospital.  There we gave them care, cleaning and drying their wounds in the short time alloted.  Telephone calls and telegraphs kept Sr. Eliz. and me very busy.  Our only casualty was the mail clerk on the train--he was badly injured.

The Doctors and Sisters worked all night giving first aid until morning.  Now our hospital was overcrowded and we had to put two and three children in one bed.  The sisters offered their beds and worked all night and the following day.  As was to be expected there was much confusion and shortage of workers.  Sr. Elizabeth came to me and said, "You wouldn't think of leaving us now would you?"  She said to me, "If you will stay until June 15th we will serve you a lovely wedding breakfast."  I agreed to stay and help them thru the crises.

We were married June 19th at 7A.M. by Father Lambert Haugh at Breckenridge.  Matt (Werner) [Regina's brother] and Marion (Holst )[Dr. Fred's niece--eventually to be Marion Nellermoe] were our attendants.  After the service we were served a beautiful wedding breakfast by Katherine Haiebl the housekeeper.

A beautiful day and we arrived in Little Falls by 6 o'clock.  Arloine (Uncle Burton's wife and Marion's mother) welcomed us with a chicken dinner.  She had roasters still at the Freedham farms.  Cecil Beattie and Marion Holst gave us a charivari that could be heard for blocks."

I do not have a wedding picture of them, but I have their joint, handwritten diary of the wedding and their ten day honeymoon which they spent touring the upper midwest in their car named James.  It must have been quite the adventure given the state of cars and roads at the time. 

Here is a scan of the first page, which gives you some idea of how small their handwriting is and how difficult a doctor's handwriting is to read even from 90 years ago when good handwriting was taught and valued.  Regina begins the page, but Claude starts writing about halfway down:

Here is the transcribed diary as I and my friend Anne (many thanks, Anne!) have been able to decipher it.

Regina: “June 19 [1920] Left St. Francis at 6:25 for church. Mass over at 7:00. Called at the parsonage for a very good reason.

Left Father Haupt’s parsonage at 7:15 as (our) breakfast was scheduled for 7:20. Breakfast at 7:30. Served Russian fashion, with piano and vocal solo.”

Claude: “Breakfast table was very beautiful and the breakfast was the best we ever had.

Took a few Kodaks at the hospital and then we went on our way. Brides maid  and best man  accompanying us + they were very jolly company. First town Foxhall, next Fergus Falls, where we all changed clothes and bought lunch. Next town Elbow Lake, then Erdohl next Evansville, then Brandon + Matt refused to go further. Then Garfield between this and Alexandria. We ate our lunch and the girls would not sit down on account of army worms. We took a few more Kodaks here, then passed through Alexandria, next Osakis at which place Matt bought some ice cream cones and films which evidently Marion got. Our dears [?] evidently became very well acquainted by this time.

Next place Long Prairie then Pillsbury Lake + Seward Inn. Next Little Falls where we had supper and went over to the house for a few minutes. Cecil Beattie called on us + we were very afraid that we might have other callers before we got away. Arloine gave us a little little shower of rice. Next stop was St. Cloud where we stayed the first night + had breakfast. This was Sunday + we tried to go to church on our way, first at St. Cloud then at Hurlie [?] Church + then Monticello when we passed through small burgs to Anoka then Osseo + Minneapolis at which place we stop[p]ed at the Andrews Hotel + had a very pleasant room.

Matt call[ed] on us that morning + we took him to lunch with us + then down to the depot. Later we went to the movies. Next day we shopped all fore noon. Called at Morcomb sorority house but did not find Lois in. We took the river road to St. Paul where we got some gas and proceeded to Rosemount Farmington via Castle Rock + Northfield at which place we had a bum supper then to Faribault Medford + was getting dark so we pulled into Owatonna [a] beautiful town + nice Hotel. Had a thunderstorm that night almost frightened Regina to death.

6/22/20. Next morning we were gently aroused by knock at door so we got up + had an early breakfast. Next Claremount, Dodge Center, Casson, Byron + Rochester at which place we had dinner. Rather bum. Bought some postals and souvenirs. Saw the Hospital Wm Mayo’s Residence + Chas Mayo’s Hereford farm. Sent my wife for souvenirs.

Left Rochester at  ‘3 P.M. Then for Hayfield + then Blooming Prairie then Geneva, Clarksville + Albert Lea. Drove around city. Visited hospital to see Miss Kepper but she was on her vacation. Drove around Lake scenery exquisite + stopped at Albert Hotel. This was the prettiest town thus far on our trip."

Regina: "Hotel accommodations good and very reasonable.

6/23/20 Left Albert Lea at 10:00 a.m. and following the Jefferson Hiway South passed thru Glenville and Mortonsville. Roads became bum on the J.H.[Jefferson Hiway] all tourists d----[ed note: I wonder if Regina was cursing here?]the Jefferson. Northwood next, Kensett, Manley, Mason City (First pretty spot we saw in our travels thru Iowa.) Stopped at Mason City to send cards and have refreshments. Next Rockwell, Scheffield, Chapan, Hampton (where we saw a nice nursery) Iowa Falls where we debated of stopping or going on. Went on to Hubbard (no hotel) Zearing (worse) Colo same and next Nevada at which place we inquired for room and lodging. As the hotel was crowded and bum my husband refused to stop and went on to Ames.

Ames was our most pleasant stop to date. The room a corner room with bath was a beauty. The twin beds were white enamel as also the furniture. Rugs draperies and comforts were blue wallpaper, blue bird with white ceiling. Hotel was the most richly furnished of any we had visited."

Claude:  "6/24/20  Visited the University grounds and left Ames at 12 am [sic]. First town Mullvale then Huxley, Des Moines at which place we took some Kodaks. Then Prairie City, Fairmont, Monroe, Otley, Pella and Oskaloosa. At which place we stopped over night. Went to the movies. Saw Where Doctor drogery[?]. Hotel accommodations were bum.

6/25/20 Left for Eddyville thru Albia Moravia + Centerville at which place saw lot of coal mines.

Then stayed Unionville at which place we stayed over night. Our impression of Missouri is not favorable. Very many rambling roses."

Regina:  "Staples house where we stayed was a typical old Southern house large and roomy but without all of our modern conveniences. The Proprietor and his wife were very hospitable people and also their daughter Mary. For the first time during our married life we rose at 7:00 am and had breakfast at 8:00.

6/26/20 Left Unionville hotel at 9:00 a.m. and when we called at the garage for the car, it was not there. The mechanics were giving him exercise evidently. When James  came back the speedometer showed an additional 10 miles. We were charged $4.00 to have the oil cup screwed down and for the use of James. We spoke to the proprietor to have the matter adjusted but without result. We left Unionville (mad). Following the Highland trail we reached Green City and Greencastle. Here "[there seems to be a page missing in the diary]

Claude:  "County line  Libertyville, Fairfield, Pleasant [Plain], Brighton, Washington, Answorth, Muscatine and then Davenport at which place we stopped for the night at Blackhawk Hotel. The best room we have had. Saw lots of very nice territory to day + Lots of quail. All pretty tired to night. Tried to buy some cherries but could not get any so we swiped a few + finally found a lady that gave us some. But this day we had some trouble. Had a puncture at Fairfield. Then lost my pencil at a school House."

Regina:  "6/28/20  Left We had a thunderstorm at Davenport and the next morning we started out in Iowa mud. My husband refused to put on chains but was finally compelled to do so on a muddy hill, when the car refused to go any further. With chains James acted some better and about 3:00 o'clock P.M. we reached Moquoketa where we stopped for the night. We saw “The Country Cousin” which we enjoyed very much. Hotel accommodations were fair.

6/29/20 Left early for Dubuque and East Dubuque. Paid 35c toll. The first time of our travels. Passed over some hilly country into Sinsinaw, where we saw Lill’s [Regina’s sister's] college. From here we drove to Hazel Green where we stopped for luncheon. Our first meal in Wis.

We passed thru Cuba, Belmont, Kodatz, Mineral Point, and Dodgeville. Stopped at Dodgeville to see the Hospital and the Sisters. We were treated royally here and had some very large strawberries with a little lunch which Sr. Benedicta prepared. With Miss Bach added to our party we left for Madison, where we stayed for the night. As Miss Bach’s train did not leave until the following morn we urged her to stay over with us.

We went to a movie and saw ‘Houdini’ and his wonderful feats. Had dinner after the movie and walked around the Capitol. Miss Bach left early the next morning for Dodgeville without wakening us.

6/30/20 Left Madison at 11:00 A.M. and had dinner at Portage. Reached Kilbourns at 3:30 and had just 5 minutes time to buy our excursion tickets and reach the boat to take a trip through the Famous Dells of Wisconsin. The Dells were simply beautiful. Wanted to take some snapshots but forgot our Kodak when we rushed to the boat, so we bought a few at ‘Bennets’. We returned from our trip thru the Dells at 6:30 and had dinner at 7:30. Listened to three pieces of concert and then went to a movie. This was the worst movie we had met."

And there the diary ends.

Claude Frederick Holst in World War 1.

Matthias Werner

Regina Werner graduation from nursing school

Child Interest Club, Little Falls MN Jan. 1938
Front row:  Cora Longley, Grace Woodsworth, Regina Holst, Helen Gillespie, Alma Lovdahl, Minnie Moeglein
Back row:  Sally Musser, Bess Sylvester, Gene Brick, Bonnie Rossberg, Pearl Taylor,     Haatvedt, Ella Vasaly, Clara Thompson, Irene Simonet, Gladys Ryan

Tuesday, November 22, 2011

Happy Turkey Day

I am off to fly to Minneapolis to spend my first Thanksgiving outside Seattle in 30 years!  I will be with my 3 children.  I hope your Thanksgiving is filling and restful and I will talk with you when I return.

Thursday, November 17, 2011

New Directions

I had my weekly appointment at Seattle Cancer Care today.  The pathology results from the biopsy of the growth that was removed from my scalp indicated it was cancer.  Same kind as found in my lungs.  So my oncologist recommended that I terminate the Gemzar chemotherapy, because the tumor had grown while I was on it.  And the nodule in my neck had also increased in size.

What this means, is that I am now without a safety net.  There are no more chemotherapy drugs that could conceivably be of benefit to me and there are no other clinical trials that seem to be applicable.  So, I will continue to see my oncologist every three weeks and as issues arise we will deal with them.  Thus far, although steady, the cancer has been slow growing.  I hope that will continue to be the case.

Tuesday, November 15, 2011

A Question of Balance

My present chemotherapy involves a drug named Gemcitabine or Gemzar.  As I've mentioned before, the side effects of this drug manifest two days after chemo and they consist of feeling like I have a very bad flu.  Lately what has happened is that I sleep for two days, Saturday and Sunday, and get nothing accomplished on the weekends.  And for the rest of the week I am more fatigued than I have been previously. I suppose losing 2/7ths of one's week is okay, as long as the treatment is extending my life.  But truly do I want an extended life if the quality is severely degraded?  Or another formulation of the question is how much quality of life am I willing to lose to keep living? 

There's no decision required immediately,  and if the chemotherapy stops working, i.e. the tumors start to grow in size again, it will be moot.  But this is like touching a live wire, it's so loaded with emotion.  We'll have to see.

Thursday, November 10, 2011

In Which I do not win the Lottery, Again

The test results from Denver are back.  And I have no identifiable genetic mutations.  The good news out of this is that at least I won't be conflicted by being unable to afford to go to a clinical trial being held at another cancer center far from Seattle.  The bad news is, well, there's just no answers.


Tuesday, November 08, 2011

Reporting back from the Operation

Everything went well for  Monday's surgery, except the timing.  We reported promptly at 2:15 but the operation did not take place until 7:15.  That was a lot of waiting on an empty stomach (I had to cease eating by midnight and all clear liquids by 10am).  So I was a bit grumpy by the time the anesthesiologists finally showed up.  However, they didn't put me out under general anesthetic, but instead used a lighter anesthetic that they typically employ during colonoscopies (dare we say propofol?).  So one minute I was joking with the operating staff and the next moment I was waking up post surgery at 8:30 pm.  I was home by 9:15 and friends Anne and Diane kept me company while I ate some wonderful Thai takeout (thank you Anne!). 

Other news was the lump on my neck that has recently arisen to perturb me is over my jugular vein, so a potential "two for one" excision had to be scotched.  And the oncological surgeon said there was a likelihood that more lumps might show up in the future.  Just like whack a mole!!

Got up this morning and prepped  a case and participated in  a hearing in the afternoon.  Had to wear a hat to the office because I'm can't shampoo my head until tomorrow.  As a result, when I pulled off the white stocking cap and bandage from my head this morning, I could see that it was going to be a very bad hair day for me.  Luckily my vanity has been shredded over the past two years.  Hopefully, tomorrow will be a better hair day.

Friday, November 04, 2011

Surgery moved up to this Monday

Got to thinking that I didn't want to wait another two weeks to remove the nubbin on my noggin.  So I was very pleased when the folks at UW Hospitals readily agreed to schedule my surgery sooner.  I will report to the surgical pavilion at 2:15 Monday, November 7.  So fingers  crossed that all goes well.

Tuesday, November 01, 2011

Waiting Period

I've been asked by many if the test results are back from Denver yet, and the answer is no.  The tumor slides were finally received there last week and it usually takes 3 weeks for all the tests to be run.  So no news on that front yet.

The other news is that I met with an oncological surgeon today and will have the lump on my head removed surgically November 17th.  He thinks it is a tumor outgrowth  and recommended excising it.  Because it's a growth on the scalp, there's less give with that skin, so it will also require the services of a plastic surgeon.  I am meeting with him/her this coming Friday.  Then after the scalp bump is gone,  maybe next month we'll move to the one on my back.  Looks like I'll need one of those fascinator hats to  cover up the surgical incision site for a while.  How about this one?


Monday, October 17, 2011

Update pre-Denver

Yesterday got up to see Seth and his girlfriend Angie off.  They are driving back to the Twin Cities.  Had a wonderful, but hectic time with them.  I hope I didn't wear them out .

But after they left I took myself to the emergency room at UW.  The lump on my back had developed an abscess and was bleeding and expelling pus, so I called my Dr. daughter and she told me to be seen.  So I did.  The ER doctor lanced the abscess and irrigated it then packed the wound in gauze and sent me home. No idea if it is a tumor or a cyst now.  Maybe a biopsy can eventually be done on the remnant.  I do have a meeting with an oncological surgeon for Nov. 1 to do just that.  But sometimes things get away from you.

Then today was my ct scans.  While drinking the ct contrast agent (which takes an hour), I did a deposition by telephone.  A great way to pass the time.  Far better than sitting around focusing on how bad the drink tastes.  Afterwards, went up to Dr. Martins' office and two nurses, Karen and Heather repacked my wound.  This time without lidocaine.  Ouch.

But just to balance things out, the ct scan results indicate that the tumors are stable or shrinking a bit.  So there's a bit of celebration before heading off to Denver this evening.

More later.

Tuesday, October 11, 2011

No chemo this week

I showed up at the appointed time yesterday but the blood tests showed that my white cell count was below the required level, so chemo was terminated.   Frankly, I was relieved because the side effects of the Gemzar are not much fun.

This is the fifth type of  treatment I've undergone for my lung cancer.  The hope is not for a cure, but for either stopping progression or tumor shrinkage.  However, with each type of treatment, the odds for improvement diminish as the cancer becomes resistant to treatment.  Several weeks ago, my daughter expressed concern for continuing treatment if there were no good results.  Essentially I would be enduring the side effects of chemo for no payoff. 

We won't know if the treatment has any effect until I have ct scans on the 17th of October.  I am already steeling myself for the probable bad news, given the odds.  I emailed some friends to let them know that this might be the end of the road as far as treatment goes.  But, I am blessed with friends who will not take no for an answer. 

My friend, Mary Pat--we were roommates back in 1978 before she went to graduate school in Chicago--is the Administrator of Clinical Research at the University of Colorado Hospital in Denver.  Denver was a center for TB patients back in the last century when it was thought that breathing cold dry air in the mountains was one way to treat tuberculosis.    And over the years this part of the country has become one of the leading centers in the treatment of  lung diseases.  One of the doctors that Mary Pat works with is Dr. Ross Camidge, a noted authority on crizotinib and the ALK rearrangement in NSCLC tumors.  She made an appointment to see him for a second opinion on October 18th.  Perhaps there are some clinical trials that he is overseeing that may be applicable to my situation.  So, I will be flying to Denver the evening of  October 17th to see if there isn't a trick or two left in the grab bag.   My oncologist knows Dr. Camidge and is very supportive of this plan. 

Many, many thanks to Mary Pat for her help and friendship.  Fingers crossed.

Monday, September 26, 2011

Operation Smile

I thought this was a wonderful video of a charity that does a great deal of good in the world. 

P.S.  Had a great time in Eugene.  Saw two superior concerts.  I had to work for an hour and a half to get a ticket to the Saturday night show because it was sold out.  Some very nice woman from Portland sold me one of her tickets.  Thank you Ms. Satterly!  I am sure that had my children seen me, they would have been embarrassed beyond belief to see me in the parking lot with my hand in the air.  But it was way worth it.  We think we saw Bill Walton there.

The young man who played lead guitar for Furthur (John K, formerly of the Dark Star Orchestra) can really play, and his voice is better than Jerry's.  (sorry Jerry, I still love you though).  It lets Phil and Bob relax and do their jobs, although Bob's vocal range is lower these days.    But Phil has become a much better singer than he was, and the backup singers and drummer and organist were first rate.

Sunday we visited a boutique distillery, 4 Spirits, in Corvallis, OR.  Right now, it's just getting off the ground, but the young owner is producing vodka with two labels:  WebFoot Vodka and Slap Tail Vodka.  Of course, they are tongue in cheek labels for the Univ. of Oregon and Oregon State crowd, but I am looking forward to trying them.

Friday, September 23, 2011

Off to Eugene for the weekend

I'm feeling like the last episode of "Freaks and Geeks" today because I am going with friends to Eugene to see two Furthur* concerts:

But it's a return to my misspent youth and a chance to get out of town.  Have a great weekend!

*Furthur was the name of Ken Kesey's bus.

Wednesday, September 21, 2011

New Word Wednesday

Our new word for today is hemoptysis.    Hemo, of course, is the Greek root for blood.  Ptysis also comes  from the Greek-- ptyalon, meaning  sputum, saliva.  So, that's what I was doing at 2:30 am this morning when I woke up to a coughing jag.  Fortunately the amount was small, so not to worry.  However, if the trend continues, then we start to get concerned.

Dr. West had a good comment about hemoptysis on a thread in  Cancer Grace:

Hemoptysis is most typically caused by a tumor invading a nearby blood vessel that is also near a branch of the bronchial tree. It may also be from a blood vessel that is part of the cancer eroding. If it's a large volume, it can be life-threatening or even fatal, though that is fortunately quite unusual, especially compared with just a minor tinging of blood in sputum of someone with cancer, which is pretty common. Still it's always worth being in good communication with a person's medical team about this symptom, how mild or severe it is, and whether it's getting worse, better, or just stable. And "anti-angiogenic" targeted therapies like Avastin (bevacizumab) and some others in that class can be associated with worsening of hemoptysis that more often becomes quite worrisome in its severity, so these agents are highly recommended to be avoided in people who have a history of anything more than slight hemoptysis.

Gemzar has a slight incidence of hemoptysis in patients--about 2% from what I could read on the internet.  So, will continue to monitor for now.

Tuesday, September 20, 2011

Progress Report

Mondays are the new chemo days.  At the meeting with Dr. Martins there was some bad news and some good news.  And some weird, unresolved news. 

Let's start with the bad news since it has to do with the YouTube video posted.  It was a big hit my last year of law school.  You should play it while reading this post.  Anyway, Dr. Martins could hear, for the first time, with his stethoscope, the burbling in my lungs that I have been hearing at night when I lie down.  It's in my lower left lung and probably due to secretions as a result of the tumors.  Pleural effusions can only be seen radiographically so that will wait until the next CT scans in October.  So I am certified as having my own "squeezebox."  I also have several small, painful hard growths on my scalp that Dr. Martins thinks may be skin cancer.  We will watch them to see if they grow larger.  Just think, I too, can be like a mistranslated Moses! 

The good news is that the small swelling on my back between my 6th and 7th (or was that 7th and 8th) mid line vertebrae does not appear to be malignant.  At least it is softer to touch than most lung cancer tumors.  And the swelling in my lymph node on my neck has decreased somewhat.

Now for the weird news.  I've been in contact through with a fellow who lives outside of Atlanta.  He wrote me this summer asking about the MDX 1105 trial and I was enthusiastic in my response.  He enrolled in it at Emory in Atlanta the end of July, and last week sent me an email asking how it was going for me.  I replied, telling him I was off the trial, and he sent a sympathetic response.  In it he told me that when he signed the consent form there was a provision for randomly receiving either 1mg per kg of body weight, 3 mg per kg of body weight, or 10mg per kg of body weight. You were not told what dosage you would be given when you signed the form.  But when he went to received his first infusion, he was told that the clinical trial protocol had changed and all patients were being given 3 mg per kg of body weight.  This was this past summer while I was still on the trial.  And I was never informed that the protocol had changed.  I was receiving 1mg per kg of body weight.  I received this email this morning, right before my appointment with Dr. Martins, so you can believe it was the first topic I raised with him.  Both he and the clinical trial manager had never heard of such a thing.  They thought that perhaps the fellow at Emory was in the MDX 1106 trial but I've received 6 emails from him all with MDX 1105 in the title. 

So, I took the little guys to Greenlake for a swim and a walk to deal with it.

Saturday, September 17, 2011

Going Home

Thanks to Alex who posted the second video first!  But this is the whole story:

A wonderful story for a Saturday.

Elephants never forget.  And bless those in Tennessee who have created such a fabulous sanctuary.

P.S.:  The epilogue

Thursday, September 15, 2011

Gemzar wins the toss

Monday I went into Seattle Cancer Care at 7 am for blood work and 8 am to meet with Dr. Martins.  He recommended going ahead with the Gemzar and I agreed.  So, I was back at SCCA at 3:30 for the infusion, which lasted about an hour and a half.  I was given steroids to help my body accept the Gemzar (as had been done with earlier chemotherapy drugs) and it powered me along nicely for two days, but today things crashed big time.  I'm not sure if it's the reaction to tapering from the steroids or catching a cold (which is again a possibility since this type of treatment causes the blood cells to diminish), but I spent the day at home, mainly sleeping.

I have a new growth near the lymph node on my left neck where a prior metastatic node was taken out back in 2010--it's probably a malignant regrowth.  If the chemo doesn't decrease the size, we'll look at radiation.  It's painful and makes it difficult to wear a seat belt in the car because of its position.  I also have several other growths on my head and on my back. The ones on my head are small, hard and painful to the touch.  The one on my back doesn't have any sensation to it.  This is a strange place to be, patrolling my body for unexplained bumps.  I'd much prefer to be utterly clueless about it all. 

A friend from work put me in touch with a cousin of hers who is in pharmaceutical research back east and she explained that the clinical trial that I participated in was a phase I trial, where they are still trying to establish the dosage to be used in treatment, so a petition for compassionate use would not be in order at this point. 

Still, I have beaten the odds.  Sunday marks the date I was informed I had cancer back in 2009.  I plan to celebrate by participating in another dachshund walk at Greenlake.  You are welcome to join me!

Sunday, September 11, 2011

Putting it back into perspective

Thank you, Shelley, for this.  You were right.  I was in tears by the end.

Anniversaries Ass Backwards

Today is the tenth anniversary of the 9/11 attacks.  I've been reading about the reminiscences and memorial events for at least the past two weeks, and have even posted elsewhere about what I was doing at the time and my reactions.  But what I haven't said was crystallized for me by another participant in a fora earlier this week.  She noted that living  with advanced cancer she sometimes wonders if a given anniversary will not be the tenth or the twentieth, but perhaps the last.  That's a feeling that I can deeply identify with.   

I've been lucky in so far as I've outlived the median life expectancy for someone diagnosed with Stage IIIB non small cell carcinoma.  It will be two years since the diagnosis on September 18, 2009.  Median life expectancy is somewhere between 13 to 18 or 21 months depending on which expert you consult.  I've been able to witness certain milestones such as my daughter graduating from medical school,  but with the ending of the 4th line treatment and moving to yet another chemotherapy that simply kills fast growing cells generally rather than specifically target my particular type of cancer, I'm uncertain how much longer the luck will hold out.  It's not that there is such a treatment at this point, but my cancer seems to overcome  the killing fast growing cells types of therapy rather handily.

Perhaps my children will never marry or have kids of their own, but I expect that to be the exception rather than the rule.  I'd like to be around to be a part of it.  Life isn't fair, as I used to tell them ten years ago when they were younger and I thought I knew better.  But I no longer can employe selective amnesia concerning the fact of my own mortality, as I used to with such facility.  It doesn't have the stark immediacy of what those in the towers faced on 9/11 but it grinds on inexorably.  The trick is not to count the moments, whether backwards or forward, but to experience them for what they offer in and of themselves.

So I don't think I will be going to any anniversary commemorations later today.  I'm just not in the mood.

Wednesday, September 07, 2011

That was a Quick Ride

Dr. Martins called about a half hour ago.  The chinical trial radiologist reconsidered and agreed that there was too much progression.  So I am off the clinical trial.

The current options so far are:

1) whether the clinical trial  would permit me to continue using MDX1105 outside the trial for humanitarian reasons (any lawyers out there know about these sorts of appeals?).

2) using  Gemcitabine (Gemzar).  Not shown to be very efficacious in late chemo settings.

3) using Sunitinib.  This would be an off label use and there is a question whether the insurance company would pay for this as a result.


The options are not so good.  We shall see.

Tuesday, September 06, 2011

Strap on your Seatbelts

We are in for another ride on the rollercoaster.

Dr. Martins was very chipper this morning. It turns out that the clinical trial back east has their own radiologist who does an independent read of the ct scans, rather than automatically accept the read of the Seattle Cancer Care radiologist. This time around, the clinical trial radiologist opined that he thought my scans showed stable results (Dr. Martins has no idea if he read the part about the kidney lesion).

So Dr. Martins has a call into the radiologist to make sure that he is certain about this, but fingers crossed, it looks like I still may be in the clinical trial. Will find out Thurs. Dr. Martins thinks as I do, that the clinical trial, at the very least, has slowed the progression of the disease. I'm past the median life expectancy (13-18 months) and I'm still in pretty great shape--no pleural effusions, no spikes in the blood tests, no physical evidence of brain metasteses.  All except for the hypothyroidism which could  be due to age.

So we have at least this little window of hope.

Thanks for all your notes and emails.  They were and are appreciated.

Friday, September 02, 2011

CT scan results not good

I had my ct scan this morning.  Dr. Martins emailed me the results this afternoon with the comment that they 'don't look good.'  I am assuming that I am off the clinical trial.

* Preliminary Report *

CT chest, abdomen and pelvis with IV contrast.
Non-small cell lung cancer. Restaging.
CTB A15 Chest Abdomen Pelvis
Type of scan: Single phase spiral
Superior Extent: Lung apex
Inferior Extent: Ischial tuberosities
IV Contrast: Positive
Reformats: Coronal
Automated exposure control and statistical iterative reconstruction techniques substantially lowered patient radiation dose.
Comments: None

July 25, 2011


Chest:  Supraclavicular region: The necrotic left supraclavicular lymph node is essentially stable in size. It measures 2.4 x 2.5 cm (4/6)
previously measured 2.3 x 2.6 cm
Mediastinum: The necrotic conglomerate of lymph nodes in the AP window is not significantly changed in size. It measures 3.7 x 3.9 cm (4/28). Previously it measured 3.7 x 3.9 cm. Again the necrotic mass is encasing the left pulmonary artery.
New since the prior exam is significant left hilar adenopathy. The largest conglomerate of lymph nodes measures 1.8 x 2.3 cm (3/62)
Lungs: Multiple pulmonary nodules are again noted. All of the nodules are either stable or increased in size. New nodule is seen in the left lower lobe adjacent to the fissure and measures 4 mm in size (3/63).

Representative measurements are listed below.
The soft tissue density in the left lower lobe measures 2. 8 x 2.9 cm (3/85) is not significantly changed since prior.
Left upper lobe nodule measures 1 cm. (3/69) this previously measured 0.9 cm.
Right upper lobe nodule today measures 3 mm (3/24) previously measured 2 mm.
Right middle lobe nodule today measures 3 mm, (3/36) which is stable from prior.

Pleura: Normal
Heart: Normal
Liver: Rounded hypodensity seen in segment 4B is stable from the prior exam. (4/72) This is too small to be characterized. 2nd
hyperdensity in segment 8 of the liver is also unchanged from prior exam this is too small to be characterized (4/51)
Gallbladder: Cholelithiasis without evidence of cholecystitis.
Bile ducts: Normal
Spleen: Normal
Pancreas: Normal
Adrenal: Normal
Kidney: Round hypodensity in the right kidney measures 9 mm in diameter (4/78), previously measuring 8 mm. Impression there is the
lesion has grown from 6 mm to 8 mm. The lesion measured 2 mm on March of 2011. This rapid interval growth is concerning for a metastatic lesion.
Bowel: Diverticulosis without evidence of diverticulitis
Bladder: Normal
Uterus/Ovaries the wires cystic mass in the pelvis measures 11 x 13 cm (4/134) this is not significantly changed since prior
Lymph nodes: No retroperitoneal, pelvic or inguinal lymph nodes meet
CT criteria for enlargement.
Ascites: None
Bones: No suspicious focal lytic or blastic lesions
Vasculature: Normal


1. Overall appearance of increase disease burden within the chest and mediastinum since the prior study
2. New left hilar adenopathy.
3. Necrotic lymph node conglomerate is stable from prior
4. Multiple pulmonary nodules are either stable or increased, and at least 1 new nodule since the prior exam seen in the left upper lobe
measuring 4 mm in size.
5. Small interval increase in size of the lesion in the right kidney since the most recent study, with a rapid increase in size when
compared to CT scan 6 months prior. This interval growth is concerning for metastatic disease.
6. Two hypodensities within the liver are stable. These lesions are too small to characterize.
7. The left supraclavicular necrotic lymph node is stable in size.
8. The cystic mass in the pelvis is also stable in size

Monday, August 29, 2011

Learning to Live with Limits

I went for my 3-month check back with the ENT who had done my laryngoplasty at the end of May.  I've held back from talking about this because I wanted to wait until the appropriate time had passed and I'd had  a follow-up laryngoscopy to confirm it.  So I did those this morning.  And it's clear now. I am not getting my voice back in any major way.  In other words, I am part of the 3% for whom this surgery really didn't work.  Oh, there's a bit more fullness of tone, but no real increase in volume and by the end of the day my vocal cords are exhausted from speaking. 

Speaking is what I do as an attorney.  There's really no way out of it.  I'm in a courtroom or in depositions, or on the phone in conferences.  All of which require a decent voice to be heard by the judge, the court reporter, the other attorney, and the witnesses.   The news was hard to take.  Oh, I could have another injection of Radiesse to see if that would temporarily help things, but it would only last at most 6 months.  Or, I could try for a second surgical implant.  Dr. Merati told me that of those whose surgery does not work out, about half of them choose to do nothing and half decide to go through with a second surgical intervention.  There's only one study out there in the medical journals about second surgeries and its findings were that 10% of those who go through the process again, end up worse than they started while about 70-80% do better.  Given that I'm already in the 3% category for 'not so good results,'  I am thinking that this is it.  End of the road on trying to regain my voice.

Despite my daughter's best efforts to cheer me up and try to tell me that it's not that bad, I'm having a hard time dealing with the reality and finality of the situation.  I'm sure that I will eventually pick myself up and get on with things, but tonight I'm feeling  sorry for myself.  Hopefully,  this will not last long.   

My apologies to all.

Sunday, August 14, 2011

Greenlake Wiener Dog Parade

Boy, did we have some fun this past Saturday at the Greenlake Wiener Dog Parade.  You can catch all the photos here.  Scooter and Truffle are No. 1 in the lineup, modelling their very chic Macalester College leashes.    We had over 30 dachshunds and their doting owners.  I have to say I was especially taken with the puppies and also a full sized dachshund named Nicholas, who has the finest confirmation I've ever seen on a dachshund of any size.

The next Greenlake parade is September 18 at 10am.  If the weather permits, I would love to have you come with me.  You just do not know how fun and chaotic it is to be surrounded by dachshunds of every color and size and temperament!

Friday, July 29, 2011

I am thinking I want to see this movie

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.

Thursday, July 28, 2011

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.

Wednesday, July 27, 2011

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.

Tuesday, July 19, 2011

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.

Sunday, July 10, 2011

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.

Thursday, June 30, 2011

Cancer Grace and a new paradigm for cancer treatment

Dr. Jack West, oncologist at Swedish Medical Center in Seattle, has a wonderful 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:

Tuesday, June 21, 2011

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!

Friday, June 10, 2011

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.

Sunday, June 05, 2011

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.  

Friday, June 03, 2011

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).

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.