Saturday, February 25, 2012

In memory of Stephanie Spar

Stephanie Spar was a Seattle architect.  We met via as she and I both had lung cancer.  She attended the cancer grace fundraiser we threw a year and a half ago and met several times thereafter.

She died recently.  I am so sad, because she was a great comfort, but I am all the better for having known her.  One of her friends read the following poem at her memorial service/dinner (she was a great gourmand), and I felt it worth posting:


That time
I thought I could not
go any closer to grief
without dying

I went closer,
and I did not die,
Surely God
had His hand in this,

as well as friends.
Still, I was bent,
and my laughter,
as the poet said,

was nowhere to be found.
Then said my friend Daniel
(brave even among lions),
"It's not the weight you carry

but how you carry it -
books, bricks, grief -
it's all in the way
you embrace it, balance it, carry it

when you cannot, and would not,
put it down."
So I went practicing.
Have you noticed?

Have you heard
the laughter
that comes, now and again,
out of my startled mouth?

How I linger
to admire, admire, admire
the things of this world
that are kind, and maybe

also troubled-
roses in the wind,
the sea geese on the steep waves,
a love

to which there is no reply?

~~ Mary Oliver

Friday, February 24, 2012

Friday Funny

My radiation treatment was set for 4:30 today with an appointment with my radiation oncologist, Dr. Halasz (I swear I will spell her name right one of these days).  My big days will be Tuesday, all day with gamma knife radiation at Harborview. And on Wednesday they may finally install a stent in my esophagus but that may be too much too soon as they will also be continuing the 2 weeks of radiation to my shoulder and chest then.

Again, the appointment was over an hour late.  We whiled the time away, reading and playing Words with Friends.  Luckily, once I was strapped in and properly positioned, it took ten minutes.  Far less claustrophobic!  Afterwards, we went out to dinner at Gaudi, a wonderful tapas restaurant (for all you Seattle residents) on 55th NE  Highly recommend.  Then home to a quiet evening.


Got home, and the cover to the mocha that my friend Anne had brought me was on the living room rug. I had placed it on the coffee table.  Then further investigation showed that the cup was on its side on the rug completely empty.  It seems that Truffle, again the chocolate addict, and undoubetedly aided and abetted by big boy Scooter, had lifted it off the low slung  coffee table and neatly, ever so neatly had licked it all up.  I can't find a drop on the carpet.

I expect it might be a long night tonight.....

The culprits looking all innocent.

Thursday, February 23, 2012

One of my tattoos

It will actually be just the dot in the middle after the permanent markers wear off.  I have three others, one on each side, and I think one directly below this one.

It was a very long day.  They promise the procedure will be only ten minutes tomorrow.  It was considerably longer on the radiation table today.

Childhood pictures

Thought I'd simply post some photos from the wayback machine.

My mother and grandmother in Salt Lake City, Utah, where my father did his internship.

At our home on Kearney Avenue in Denver with my sister and younger brother right before we moved back to Ohio in 1956.  Dad did his pediatric residency at Denver General Hospital.

On the porch of our new house on North Clinton Street  in Defiance, OH, 1957.

Christmas, 1957.  Note I did not get a Red Ryder BB gun with a compass in the stock, but something more "ladylike."  I was wearing a brand new Christmas outfit too, until my baby brother Mark erped on me.  I was rather upset at the time, as I recall.

A  birthday party for me at our house on North Clinton Street in Defiance.  I remember we played pin the tail on the donkey and dropped clothes pins into glass milk bottles as party games.  I lost both, badly.

My sister and I playing dress up.  We're in the house my folks built on Elliott Lane in 1959-60.  It was a two story house, which went against the style of the day.

Fishing either at Coldwater Lake in Michigan or Clear Lake in Indiana.  For a while, our family vacation was to rent a cottage at a lake for a week in the summer.  Never had a speed boat though, so never water skied.

Two of my siblings and Alan Busteed with our puppy, Duchess.  Alan used to come over to our house and ask if he could go 'pee-pee in the potty,' which upset my mother because she considered that very bad language.  I think Alan plays for the Puerto Rican National symphony these days.

Winter dance freshman year in high school. Really looking forward to it, aren't I?

Junior Senior prom 1967.  I was a freshman and was asked by a very shy senior, Kirk Scharmin.  I remember when he picked me up and we were going out the front door, all 4 of my younger sibilings yelled out, "Please don't squeeze the Charmin!"  I managed to spill a chocolate milk shake on my dress at the drive in burger joint north of town, bringing a tense evening to an ignominious end.

Wednesday, February 22, 2012

Tattoos Tomorrow!

Went to the radiation oncologist at University of WA today.  Looked at the CT scan from last Friday and it's clear that there is no pleural effusion, that the shortness of breath seems to be coming from the growth of several mediastinal nodes, and boy, is the jugular vein compressed at one point along the left side of my neck!

So the schedule is this:  ten days of radiation to the neck and chest, interrupted next Tuesday by the gamma knife radiation to my brain.  Today they made a mask for my face to hold it in place properly while they run the radiation on the side of my neck.  They ran the template under hot water and then formed it to my face.  It looks like this:

Maybe I can join a fencing team later.  They also marked where they are going to put the tattoos on my chest,  to better position and direct the radiation.  So I should be quite cool after this.  The first radiation treatment, which will take a bit longer than the others, will be at 4pm tomorrow.  I have been given, shall we say, very strong pain medications to deal with the possible side effects of the radiation, but the Dr. Halazh is predicting that the worst effect will be a sore throat.  We shall see.

Sunday, February 19, 2012

Thinking about Postponing Death

I went to the Washington Post this morning to read my Sunday comics.  Usually the rest is crap, the paper has become an embarrassment from its heyday during the Watergate years.  But this article was in there, and I think it is something for us to consider.  If not for ourselves, then for our parents as they age.  My father died in 2002 and I was not in Kentucky for this.  But my mother is now 88 and has sold her house and is going to live with one of my sisters.  I'm sorry that I can't be of more help to her right now.

Also, for you Washington residents there is a Physicians Orders on Life Sustaining Treatment that the Washington Medical Association has put out.  My daughter clued me into it during her visit last week.  It's a two page form.  I urge you to copy it, read it, fill it out and return it to your family care doctor to be kept in your medical records.  It's far better to make these decisions now, rather than in a dire emergency.

Friday, February 17, 2012

Good news/Bad news

I went to see the radiation oncologist, Dr. Halahz, at the University of Washington today.  She showed us the brain MRI.  Two of the three brain metastases are located in the left cerebellum, the largest being  1.8 cm.  The third is located in the left parietal lobe.  None have interfered with my basic functions.  I had a choice of Whole Brain Radiation or the more directed, gamma ray knife.  Both have similar life outcome expectations.  Whole brain radiation attacks the entire brain, is done over a period of weeks, causes your hair to fall out and some studies have indicated that 4 months out, it shows interference with higher brain functioning.  The plus is that it gets the entire brain covered.  But I chose the gamma ray knife because I don't want to lose my hair again and the downturn in brain functioning was not attractive to me. Plus the gamma ray knife is a one time deal and they can also deal with the scalp tumors at the same time.

We talked about my left shoulder where the pain is so much greater these days, and the return of my swallowing problems as perhaps susceptible to radiation as well. Dr. Halazh suggested that since I had not had a CT scan in May it would be a good idea to get a more recent one so she could see what was going on.  As opposed to Group Health, where we would have had to wait several weeks, if not a month or more for the CT scan, she got me in today. 

And she called this afternoon.  News is not good.  The supraclavicular tumor on my left shoulder has grown and it appears that it has spread into my jugular vein.  Either that or it's a large blood clot.  The mediastinal tumor (which is on the front of my chest next to my heart, has also grown and has isolated a part of my esophagus in which liquid is pooling.    So I am first to go through a 5 day radiation therapy attacking the supraclavicular tumor.  This begins next Thursday and will finish the day before I go into have the gamma ray knife radiation done.  The have to fix a frame into my skull so that they can position the gamma ray precisely where the tumors are.  But I will first have to go through another brain MRI.  I have asked for sedation, which I think is not unreasonable.

The good news is that we caught it now, not when the jugular vein or the esophagus was completely blocked. But that's about it.

So this is a scary time.  Let's hope it goes well.

Thursday, February 16, 2012

3 Brain metastases

Don't know where or how large they are yet.  I have an 8:30am appointment with a radiation oncologist at the University of WA tomorrow.  And now I have an excuse when I lose my Words with Friends games.

Monday, February 13, 2012

Progression Notes

I went to see my oncologist for my monthly visit.  Blood work was fine--that was perhaps the only good news. 

I have an increase in certain symptoms, which indicate that the cancer has possibly spread to my brain.  Chief among them, frequent headaches, especially in the morning.  The symptoms are readily treated with NSAIDs  but they keep coming back (like right now).

Neuropathy on the bottom of my right foot and two more painful growths on my scalp, as well as an increase in the pain in my left upper shoulder where we suspect a cancerous lymph node lurks right above my jugular vein (which makes it inoperable).  I also now have a pleural effusion in the lining of my left lung.  That means fluid in the space between my lung and my body, which has affected my breathing capacity.

Oh, and my oncologist thinks I have an outbreak of shingles on my face.  And here I thought it was pimples.  They had to disinfect the room after I left, it's considered dangerous for those with cancer.  But  no direct connection to the cancer.  It should take another 7-10 days to clear up.  Until then it's back to the lovely appearance I sported when taking Tarceva.  Damn.

So, I am scheduled for a brain MRI first thing this Thursday morning.  My daughter is home visiting for a few days, and she will accompany me, but then must fly back to Minneapolis where she is finishing the first of her four year residency in internal medicine and pediatrics. 

Finally, it seems that folks did not see my post about the fact that the surgeons did not install an esophageal stent a month ago.  At first the widening that they did seemed to work, but I am back to having a hard time keeping food down.  It's a wonderful weight loss regimen.  I am down two sizes and back at a weight I haven't seen since pre-kid days.  I would not recommend it, however.

Thank goodness for friends, kids and Downton Abbey.

Monday, February 06, 2012

Johann Brandl Found!

I received some great news this morning:

Dear Regina,

We found him! Johann Brandl survived the war. He died in 1972 and he is buried in the family-grave in Untermettenbach.

During the war he was wounded in St. Mihiel/France. His brother Xaver was killed in action in Poland.

I amended my article:

Attached a foto of Johann Brandls grave.

Mit freundlichen Grüßen
Fritz Kirchmeier
Volksbund Deutsche Kriegsgräberfürsorge e. V.
Werner-Hilpert-Str. 2
34112 Kassel

Tel.: 05 61 - 70 09 - 1 39
Fax: 05 61 - 70 09 - 2 85

This absolutely  made my week.  St. Mihiel is in northeastern France near Metz and Nancy in France and Saarbrucken in Germany.

Here is the full text of the original article:

Kann jemand helfen?

Ein Foto aus Newcastle und eine Erkennungsmarke aus den USA geben Rätsel auf

Das Foto von Alfred Wagner, gefunden in NewcastleKassel, 10. Januar 2012 - Die Dachböden aller Länder bewahren seit jeher geheimnisvolle Fundstücke, die von längst vergangenen Zeiten erzählen. Und überall in der Welt räumen die Menschen auf. Die Hinterlassenschaften der vormaligen Generationen aber geben den Erben mitunter Rätsel auf. Manche wenden sich an den Volksbund, wenn es darum geht, die Mitbringsel der Groß- und Urgroßväter aus den Kriegen zu entschlüsseln oder womöglich den rechtmäßigen Besitzern zurückzugeben.

Aus Newcastle in England erreichte uns vor einigen Wochen ein Foto per E-Mail. Es zeigt einen jungen Soldaten in Uniform. Auf der Rückseite ist handschriftlich vermerkt: „Herzlichen Gruß, Alfred Wagner“. Der Vater des Einsenders hat vor Jahren eine Brieftasche mit diesem Foto aus einem Müllcontainer geborgen. Sein Sohn würde nun am liebsten dafür sorgen, dass die Familie des Alfred Wagner beides zurück erhält.

Kann jemand helfen? Wie Foto und Brieftasche in den Müll nach Newcastle gelangt sind, wird wohl für immer ein Rätsel bleiben. In unserer Datenbank kommen wir jedenfalls nicht weiter. Dort sind 190 Gefallene gleichen Namens registriert. Müssen wir nach einem Soldaten suchen, der in England umgekommen ist? Oder ist Alfred Wagner irgendwo anders gefallen? Vielleicht hat er ja den Krieg überlebt. Die Klärung dieses Falles wird wohl reiner Zufall sein.

Nachtrag vom 12. Januar: Der Einsender Paul aus Newcastle berichtet, dass die Brieftasche noch weitere Fotos von Alfreds Einheit und seiner Familie enthält.

Etwas leichter erscheint auf den ersten Blick die Antwort auf eine E-Mail aus den USA. Regina C. hat zwischen ihren Pullovern eine alte mit Strickwerk verzierte Handtasche ihrer Großmutter wiederentdeckt.

Sie enthält zwei Erkennungsmarken aus dem Ersten Weltkrieg: die ihres Großvaters, der in der US-Armee diente und die Tasche aus Frankreich nach Hause schickte, und die eines deutschen Soldaten. (s. zweites Foto). Deren Inschrift lautet:

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

Auch hier bedeutet die gefundene Marke noch nicht, dass ihr Besitzer tatsächlich gefallen ist. Unsere Datenbank kennt 18 Gefallene des Ersten Weltkrieges mit diesem Namen. 17 davon sind auf Kriegsgräberstätten in Frankreich beerdigt. Bei allen fehlen Geburtsdatum und -ort.
Wir würden Regina gern mitteilen, wo der gesuchte Johann Brandl begraben ist. Aber das wird, sofern es uns überhaupt gelingt, einige Zeit dauern.

(siehe auch:

And here is the followup:

Es konnte jemand helfen
(Nachtrag vom 2. Februar 2012)

Im Fall des gesuchten Johann Brandl nahm Werner Heinz Bauer aus dem oberbayerischen Geisenfeld die Spur auf. Brandls Geburtsort Untermettenbach ist heute ein Ortsteil von Geisenfeld, das zum Landkreis Pfaffenhofen gehört. Auf dem Kriegerdenkmal des Ortes ist Johann Brandl nicht verzeichnet, nur Xaver Brandl, wie sich später herausstellte, sein älterer Bruder, der am 24. Juli 1915 gefallen ist.

In den Kriegsstammrollen der bayerischen Armee fand Werner Heinz Bauer detaillierte Angaben zu den militärischen Lebensläufen der beiden Brüder. Xaver ist demnach bei Kulakowice gefallen, einem kleinen Ort im südöstlichen Polen. Über Johann erfahren wir zum Beispiel, dass er am 24. September 1914 in St. Mihiel (Frankreich) verwundet wurde, im März 1916 erkrankte und am 9. Juli 1917 in Heimaturlaub durfte. Seine Führung wird mit sehr gut bewertet. Vor allem aber: Johann Brandl hat den Krieg überlebt.

Werner Heinz Bauer, Oberstleutnant der Reserve und Vorsitzender der Kreisgruppe Oberbayern-Nord im Reservistenverband, ist dem Volksbund sehr verbunden. Er hat uns oft bei den Sammlungen unterstützt und auch bei zahlreichen Arbeitseinsätzen auf Kriegsgräberstätten mitgearbeitet. Seine Recherche führte ihn auch auf den Friedhof von Untermettenbach, wo er das Familiengrab der Brandls fand. Auf dem Denkmal sind die Lebensdaten der Verstorbenen zu lesen. Johann Brandl ist der erste Eintrag, er starb 1972 und wurde somit fast 80 Jahre alt.
Wie seine Erkennungsmarke während des Ersten Weltkrieges in den Besitz des amerikanischen Soldaten, des Großvaters von Regina C., gelangte, wird aber für immer ein Rätsel bleiben.

I am watching the Downton Abbey series on PBS Sunday nights and it just brings the reality a little closer to home.  I was worried that perhaps my grandfather had a hand in Herr Brandl's death, which is why he ended up with the dog tag.  More likely he simply found it somewhere near St. Mihiel where Brandl was wounded and took it home as a curiosity.  I hope that Herr Brandl's  descendants will somehow obtain his dog tag eventually.   Now if someone can translate the amended article, I would be ever so grateful.