Wednesday, September 30, 2009


Sometime in the '90s, I recall watching a tv movie about the ill-fated Antarctic expedition of Robert Falcon Scott. He was a famed English explorer who decided to rely on horses, not dogs to reach the South Pole in 1913. Big mistake. And he and his party made it to the South Pole, only to discover that Norwegian, Roald Amundsen, had beat him there.

Scott and all who went with him perished on the return trip. What made an impression on me was the penultimate scene with Scott in the explorers' tent, his comrades gone, writing furiously, his last letters to friends and family.

The urge not to be forgotten is strong, isn't it?

Monday, September 28, 2009

Winning the Trifecta

The biopsy results are back and they are not good. Yet they are still incomplete. Adenocarcinoma is diagnosed, moderately differentiated. They did not have enough material to identify the 'phenotype' and it is not definite that the lung is the primary site of the tumor.

I mentioned to my primary physician during the phone call that I wanted a full body scan or a PET scan to see where the cancer was in my body, and her immediate reaction was that the treatment was going to be targeting all fast growing cells in my body, so I didn't really have to identify the primary or other metastasizing sites. It's too hard to argue with my voice a mere whisper, so I will wait for when I meet the oncologists I have been scheduled with on Thursday afternoon.

Until then, I leave you with this thought. I had a chest x ray in 2005 and it showed no abnormalities. 4 years. If any of you have been considering a chest exam, I think it might not be a bad idea. This sort of cancer can remain undetected for quite a while.


I sing to use the waiting,
My bonnet but to tie,
And shut the door unto my house;
No more to do have I,

Till, his best step approaching,
We journey to the day,
And tell each other how we sang
To keep the dark away.

--Emily Dickinson

Sunday, September 27, 2009

What I would not give for a good solid burp

When you have a paralyzed vocal cord, the opening to your lungs is always open. So you have to be careful while eating and drinking that you don't get any solids or liquids down the windpipe. Generally it is not difficult. In my case it is the left vocal cord that is frozen, so when I'm drinking I turn my head to the left to close it off a bit more and avoid water going down the wrong hole, as we so blithely proclaimed during childhood.

But one of the problems with having it open constantly is that for some reason I cannot get a good burp on. And I rather miss that. It kinda hurts to burp and sometimes it feels like a pain in the chest as the gas expands and slowly drifts out. Now if I were a worrywart, I could've taken myself to the emergency room last night when the chest pains became significant. But there were no other symptoms like a racing pulse and I had just eaten a Thai salad with lots of cabbage so....What I found helpful was to take the dogs for a walk. A little movement eased things significantly. But in the end I'd still like a good solid burp. It's like putting a period at the end of a sentence. All I got are commas right now.


Postscript: When complaining about this to my daughter, she confessed that at the dinner table once, she and her two younger brothers burped out the alphabet. They could do every letter except "W" which was left to my oldest son. I suppose his long career on swim team and water polo gave him the edge there. Which weirdly fits in with the birthday card I am sending him for his 23d next month. It reads: "You know son, when you were just a baby, I remember burping you." The inside reads: "Now that's just one of the many things you do on your own."

And well too, it seems.

Saturday, September 26, 2009

Digging for Gold

The biopsy.

To do a biopsy on a lung is rather different than doing a biopsy on a more stationary organ. The lung moves constantly. That's its job, inhaling and then exhaling; without we suffocate. So nothing stays still unless you will it. And even then you can hold your breath and your lung is in one position and hold your breath a second time and the lung has moved ever so slightly yet putting the tumor out of reach of the needle that is poised to retrieve some matter from it. In addition to moving in and out, your lung also moves up and down the stationary rib cage, so you have another shift that the doctor has to account and adjust for in a successful retrieval. This tumor measures less than 3cm by 3cm so even though that sounds huge to me, it is rather slight for purposes of capture when it's a moving target.

I learned this after we showed up at 6am to the hospital and I was checked into a day room where I disrobed for the procedure, was given an intravenous shunt on top of my left hand, hooked up to a saline drip, and waited. Luckily C, my ob/gyn, who has delivered all three of my children, and who has become a good friend was there to greet us and engage in small talk with my daughter and me, which was reassuring and helped pass the time. Eventually I was wheeled down to level A for the procedure. At some point I met Dr M, the radiologist in charge of the procedure, who was very highly recommended by my ob/gyn. He explained both the process and how the working of the lung made it difficult. He told me that they were going to try both ultra sound and ct scan to visually locate the tumor and then shoot it with the needle punch. He fired the needle punch for me so I would know what it sounded like and then a sedative was added to my drip, but not so much that I would fall asleep as that would negate the process because they needed me to be alert enough to hold my breath.

Dr. M began by numbing the section of the back that was going to take the needle. It took 4 stages to completely numb the area, as he went into the surface tissue first and then into the deeper skin levels with the anesthetic. Then they used both the ct scan and the ultrasound to look into my lung and locate the tumor or growth. The ultra sound did not seem to be providing a clear enough image so they gave that up and positioned me in the donut hole of the ct scan machine. Then I was instructed to breath and then hold it. When Dr. M was prepping me, he said not to take a big breath like I would if I were singing, but to take a normal breath and then hold it. I probably took a breath and held it for them at least twenty times. First they had to mark where it probably was with an 'x' on my skin, then I had to take a similar breath so it showed up in the right position so that the needle punch could take a core sample. At one point Dr. M said, "we're almost there," and then of course my breathing went all off base, so we were back to 4-5 rehearsals, and without warning, he stepped in and >bang< it was done. The ct scan showed the needle going into the tumor and he was quite certain that he had retrieved the desired matter. Which, he then told me was a good thing, because if he had had to do additional needle punches, the danger of lung collapse increased greatly. It was a little like putting a small hole in a balloon.

So, he showed me the material which was a tiny whitish thread held in clear liquid preservative. The nurse and tech cleaned up the punch site, which turned out to be right below my left shoulder blade. That was rather a shock because I thought our lungs were much longer. And then I was whisked upstairs in the new gurney by a wonderfully polite orderly, where I visited again with my daughter and C, and then slept until they took me back to level A to x ray my chest to see if the lung had caved in. It had not so I was taken back upstairs for another hour or so of wait time and then a second chest x ray.

They had given me dilaudid for the pain, and at some point after the second x ray, I became severely nauseous as a result. Apparently it is a common side effect of opioids. That held up my discharge for a bit, but I was home by 1:30pm.

Now we are waiting again. First for the biopsy results, then either for more tests and eventually for a meeting with the doctors to determine a treatment protocol. I am assuming that this is cancer because of the growth on my vocal cord that has reduced my voice to a whisper and barred me from singing was identified on the first ct scan as a metastasis. What they are trying to do right now is learn where it metastasized from. But if by some miracle, they were to tell me that there has been some screw up and it is all benign, I could live with that. Right.

On to more waiting!! My favorite.

I remember as a child not being able to sleep Christmas eve and getting up and taking apart and putting the wind up clock in my bedroom back together. But quietly so I wouldn't wake my younger sister. Right now, I'm looking for something similar that will last longer and it could even be slightly noisy. Have not found it yet.

Thursday, September 24, 2009

At the top of the roller coaster

Twenty four years ago plus or minus a month or two, I was in labor with my first child. It wasn't until I was in labor that I realized, "I can't back out of this. I can't quit just because it hurts too much. I have to see it all the way through no matter what I want to do." After 23 hours of labor and no epidural or spinal, I finally gave birth to a 7lb baby girl. At first I couldn't even bear to look at her because it had hurt so much for so long. But when I did, the magic started.

That was my first major ride on the roller coaster, where I was teed up at the top--looking at the yawning abyss below, without a clue as to what was going to happen next, and without any semblance of control.

I am back there tonight, waiting for the biopsy tomorrow and the results and the treatments and the reactions, and, and, and. Only this time, that baby girl is with me and she's telling me things she's learned in medical school, where's she's just started her third year. And we laugh and carry on but a lot of that knowledge is not easy to hear. Things like, I probably have either stage 3 or stage 4 cancer, depending on where the primary situs of the cancer is. And there are only 4 stages. And if the primary site is in another organ, that is a stage 4. But if the primary site is in the lungs, that's a stage 3 but it could have metastasized to another blood rich organ, particularly the brain.

So once again I am teetering on the top of the roller coaster, looking at the darkness below, absolutely terrified, and not knowing what bright birth this portends.

Tuesday, September 22, 2009

Waiting for Godot, Group Health's second cousin

As you may recall, I received the news of the probable cancer in my lung on Friday last.

At the conclusion of the visit, Dr. H, my ENT doc told me that I could expect a call from oncology on Monday or Tuesday to set up my biopsy appointment. But if I didn't receive a call from them by Wednesday, I should call Group Health.

This is a feature, not a bug in Group Health service. I have learned over my 26 years as a Group Health member that you cannot sit back and expect to receive service: no, you must be an aggressive, informed consumer, unafraid to get in peoples' faces to obtain the service you think you are entitled to.

So over the weekend, I stewed, wrote emails, said thank you a lot to well wishers from many facets of my life and tried not to think about it too much. Fat chance. Luckily there was a wedding Friday night and I had houseguests for the weekend for that ceremony, who kept me well entertained.

Come Monday at 8am I was on the phone, dialing my primary care physician, Dr. Mc, someone I have seen regularly in the past 15 years, and someone with whom I am on a first name basis. I explained my situation to Dr. Mc, something she was already familiar with as I had emailed her Thurs last week and asked if she could give me the CT results early. She demurred, saying that they weren't all in. Of course, now I knew that she really wanted to reserve the tough job for the ENT guy, the one with whom I was meeting in person--something I understood. No hard feelings there. But I did tell her that I wanted her to talk with oncology and get them to call me today, Monday, to set the biopsy appointment as soon as possible.

First I got a call from Dr. N, the pulmonologist, who said he had read the CT scans and that he thought 1) the primary tumor was in the lung not elsewhere in the body, and 2) there was an opening for the type of biopsy which I needed (a CT scan or an ultra sound guided needle biopsy to be placed in my back in the lower left lobe of the lung) on Friday, and if they did not give me that time to call him back. He released my two CT scans to my GH web page, so now I could read them online and see the narratives for myself. And he gave me the number for Radiology, which I called, immediately thereafter. The woman who answered the phone could not help me and sent me to another number where I was told to leave a message. Which I did.

An hour went by. I didn't actually register the passing of time for a bit as I had to drive to Olympia for a big work related meeting and was driving to meet my co counsel, who could drive us both there. Once I got in her car, though, my cell phone rang and it was P from radiology. She started by telling me that I could not have any Motrim, Aleve, aspirin, ibuprofen, fish oil or Vit E before the procedure. No explanation why. I said fine. Then she said, "We have a date open to do this on October 8th." At that point, I jumped in and said, "No. I was told there was an opening this Friday." P said, "Yes, but you have to not have taken any of those drugs for ten days before the biopsy." My thought, not articulated but lit up in red neon at the front of my cortex was "YOU HAVE TO BE FUCKING KIDDING ME, LADY. TEN DAYS FROM TODAY IS NOT OCTOBER 8." What I instead said was, "That's fine, I will be in the clear by this Friday. Please give me the appointment." Which she then did. And then instructed me on the appropriate preparations for the procedure which will be this Friday at 6 am.

Not to be too didactic, but, this is not the first time that this has happened to me at Group Health. Unless I had spoken up for myself, I could have been waiting for 17 days for the biopsy of a tumor that in less than a month had destroyed my voice. Perhaps this is true for private medicine as well, but if so, it is not helpful in the least. I have heard that the oncology staff is very much different from other specialities in terms of their willingness to reach out and assist their patients. I hope that is true.

Again, nothing to do here but wait now for another three days. By then it will have been a week since my life shifted into a different reality.

Health care reform up close and personal

I've written a couple of posts lately about health care reform in the abstract. It's rather easy to do when it's all hypotheticals. Imagination is a wondrous thing--you can get a frisson of fear by thinking of taking up skydiving, but you don't have to go through the actual leaping out of the plane. Same with all those poor people who get sick and what do they do with their jobs and how can they afford this?

Well, I am about to find out firsthand. In the middle of August, my voice started going. That was odd. I had just spent a week at a music camp for adults, singing my lungs out in large and small groups and generally getting jazzed at being with people from all different walks of life doing one thing we loved so well--music. So at first I attributed it to vocal exhaustion.

It didn't get better. It got worse. So then I attributed it to a nasal inhalant I had been taking to relieve allergy symptoms. Stopped taking the inhalant. It got worse. I was reduced to sounding like Marge Simpson only softer.

Four weeks into this, I hauled my butt into Group Health one Sunday afternoon to be seen. The physician's assistant on call that day did a full blood workup and looked in my throat and found nothing remarkable. He suggested that I make an appointment with an ENT. So I called my AP's office the next day to see if she would do a referral. Found out I could self refer. That was a good thing. But that was it for good things.

An appointment with an ENT was made for Wednesday afternoon. Dr. H anesthetized the back of my throat and put a scope down through the nasal passage to the vocal cords. "Say 'eee,' "he said. I complied. "Say it louder." Once again I tried to increase the volume. "Your left vocal cord is paralyzed," he said. He told me that he didn't know the cause but was scheduling me for a CAT scan first to rule out cancer. "It's been 5 or 6 years since I've seen one of these cases where it was caused by cancer, but we should get that out of the way first," he assured me.

So a week later, I was back at Group Health for my first ever CAT scan, with contrast dye. When they inject you with the dye, you get a metallic taste in your mouth and it feels like your are wetting the table. You are not. They injected me twice for two different CAT scans.

Friday at 9am I returned to Group Health for the results. Well, I beat Dr. H's odds. The CAT scan picked up 3 distinct growths in the left lung--two in the lower part and one in the upper lung. It was the upper growth that was pressing on my vocal cord and causing my symptoms. It also appeared that this growth was a metastasis from another, a primary site. Dr. H inquired about family and friends who might live nearby and whether I was a member of a church. When I indicated that I was, he responded, "That's good. They will help you as you get your affairs in order."

So, here we are. On a new, completely unexpected and frankly unwelcome journey. But, because we have this raging health care debate going on in our country right now, and as I am a member of one of only two medical cooperatives in the nation, perhaps my journey can provide some insights into this highly political charged issue. I invite you to come along for the ride.

Wednesday, September 02, 2009

September 1, 1939

That is the date that the Germans invaded Poland.

September 1, 1939

by W. H. Auden

I sit in one of the dives
On Fifty-second Street
Uncertain and afraid
As the clever hopes expire
Of a low dishonest decade:
Waves of anger and fear
Circulate over the bright
And darkened lands of the earth,
Obsessing our private lives;
The unmentionable odour of death
Offends the September night.

Accurate scholarship can
Unearth the whole offence
From Luther until now
That has driven a culture mad,
Find what occurred at Linz,
What huge imago made
A psychopathic god:
I and the public know
What all schoolchildren learn,
Those to whom evil is done
Do evil in return.

Exiled Thucydides knew
All that a speech can say
About Democracy,
And what dictators do,
The elderly rubbish they talk
To an apathetic grave;
Analysed all in his book,
The enlightenment driven away,
The habit-forming pain,
Mismanagement and grief:
We must suffer them all again.

Into this neutral air
Where blind skyscrapers use
Their full height to proclaim
The strength of Collective Man,
Each language pours its vain
Competitive excuse:
But who can live for long
In an euphoric dream;
Out of the mirror they stare,
Imperialism's face
And the international wrong.

Faces along the bar
Cling to their average day:
The lights must never go out,
The music must always play,
All the conventions conspire
To make this fort assume
The furniture of home;
Lest we should see where we are,
Lost in a haunted wood,
Children afraid of the night
Who have never been happy or good.

The windiest militant trash
Important Persons shout
Is not so crude as our wish:
What mad Nijinsky wrote
About Diaghilev
Is true of the normal heart;
For the error bred in the bone
Of each woman and each man
Craves what it cannot have,
Not universal love
But to be loved alone.

From the conservative dark
Into the ethical life
The dense commuters come,
Repeating their morning vow;
"I will be true to the wife,
I'll concentrate more on my work,"
And helpless governors wake
To resume their compulsory game:
Who can release them now,
Who can reach the deaf,
Who can speak for the dumb?

All I have is a voice
To undo the folded lie,
The romantic lie in the brain
Of the sensual man-in-the-street
And the lie of Authority
Whose buildings grope the sky:
There is no such thing as the State
And no one exists alone;
Hunger allows no choice
To the citizen or the police;
We must love one another or die.

Defenceless under the night
Our world in stupor lies;
Yet, dotted everywhere,
Ironic points of light
Flash out wherever the Just
Exchange their messages:
May I, composed like them
Of Eros and of dust,
Beleaguered by the same
Negation and despair,
Show an affirming flame.