Lusting after NED

Wait, this is not what you think (but it does make for a snappy headline, eh?)!

NED stands for "No evidence of disease," and is an acronym that I only recently learned about on a website composed of lung cancer patients and their close friends and family. It's like getting an 800 on your SAT scores--rare enough that those who attain this coveted status are held in utmost regard. They give the rest of us hope, whether realistic or not. Maybe someday I can announce to the assembled that I am "NED" too.

However, it's still a status that is far too elusive for my cohort. A member of this site (you have to sign up to enter it) promised to send other members a copy of the National Cancer Care Network (NCCN) 2010 clinical practice guidelines for lung cancer. I requested and received a copy and it is a most detailed look at the staging of lung cancer and the treatment options for each stage of the disease process. Dr. M from Seattle Cancer Care Alliance, who was my second opinion oncologist last fall is listed as one of the lung cancer panel members. But at the end of the practice guidelines is a listing of cancer suvivorship rates. At the end of 2000, according to this document the survival rates for the following cancers were estimated to be:

breast cancer..........2,197,000
prostate cancer....... 1,637,000
colon cancer..........>1,000,000
lung cancer.................340,000

Contrast that with the fact that each year over 166,000 people are diagnosed with lung cancer--more than all the other three combined, and again the conclusion is inescapable--research into curing lung cancer is not a priority for the medical community at the present time. Some doctors believe that the tobacco industry has some responsibility for this state of affairs. Those who make cigarettes and cigars do not want the full facts on this to be disclosed because it might drive customers away if they were made fully aware of the terrible toll tobacco exacts. In fact one oncologist I know fully supports raising the tax on tobacco to confiscatory levels. Me, I just prefer a Susan G. Komen "Race for the Cure" approach, with lots of participants and lots of publicity, with the spotlight fully focused on the numbers and the money involved, and exactly what happens when you get diagnosed with lung cancer.

If more folks could be persuaded that indeed, they are at risk for developing lung cancer, and that major new research into diagnosis and cures is warranted, then perhaps an inexpensive early warning test for lung cancers could be invented that could be a regular part of everyone's annual check ups. Kind of like a kinder, gentler, more frequent colonoscopy. Most lung cancer is not detected until it is at stage IV, the last stage, where it has metastasized to other parts of the body like bones and brains. Very difficult to treat and cure at that point.

Well, I'll climb down from my soapbox for a bit just to give a personal update. I had appointments this past week with my oncologist and the otolaryngologist who did the injection into my vocal cord. The news was 'meh.'

My voice has not fully returned, nor will it with just this operation. The ENT doctor said that for the operation to have completely restored the vocal function, the injection had to have made the paralyzed cord come out exactly halfway and be completely smooth and straight for the functioning cord to close the gap just right. He can get closer to the ideal, but it has to be a more invasive surgery where he does an incision on my neck. And given that we do not know if the Tarceva is working, and will not until my next CT scans, which are set for February 25, he suggested that I be content with what I have for now and save my strength for the bigger battles ahead. So that is the plan.

My oncologist informed me that the pathologist never did the test on the last biopsy that would have determined whether my lung cancer has the EGFR mutation that makes it particularly susceptible to Tarceva. Apparently it is an expensive test--$700+-- and Group Health is not wild about it as a result (I am working on a mini rant about Group Health and money, but will save that for another time). So we are going on a wing and a prayer here with the selection of this as second line treatment. There is some evidence that one does not need the EGFR mutation to succeed on Tarceva, but that is an even slimmer percentage again. So we are left hanging on to hope, and waiting once again.

And dreaming of NED.

Odds and Ends for 50, Alex.

It's been a well of a heek, hasn't it?

I like this suggestion for Health Care Reform. I hope someone shows it to the Democrats.

Also as a follow up to my post about lung cancer being the ugly stepchild in cancer funding and research, is this confirming article.

I continue to have a voice, and although it is not strong enough to sing, I can make myself heard across a room. Not loud enough to yell for the dog who ran away last Friday night, however. Max, the 12 year old escape artist, seen pooped out above. Luckily my son 'retrieved' him for me.

Finally, on Wed I woke up to a small swelling under my left arm that progressed to being extremely painful throughout the day. I called my daughter that evening and she very kindly came over, took a look at it and said, "Mom, it's a pimple." So the Tarceva is working quite well in producing all those attractive side effects. What we won't know til late in February with the next set of CT scans, is whether it has been holding the cancer at bay.

Giving Voice

It seems that my voice is coming back. It's 4 days post surgery and I have volume and can vary the tone. It is nowhere near where it used to be, but it is a great improvement from what I have lived with for the past 5 months. And for that I am grateful.

But even in the midst of my own problems, there are many more who are sadly in a far worse situation. I donated to Doctors without Borders today for the people of Haiti. So much suffering. The photographs and the stories are heartrending. There are many, many good charities out there who can use our money, but you might want to check to make sure that they give the majority of their donations to the intended recipients, and not to administrative costs. Charity Watch is one place you can use to make sure your dollars are being well spent. I will note (in a bit of sect promotion as I have been presbyterian these past 19 years) that Presbyterian Disaster Relief Assistance partners with Church World Service internationally and it is "A" rated by this organization.

Blessings on all of you who have given and will give. This is truly a difficult time, but one that brings us closer together.

PS: text messaging donations are quick, but current practice is that the money is provided to the charity, after the cell phone bill is paid. Just a thought.

Vocal Cord Implantation Surgery

The surgery went as scheduled Monday at Group Health in Bellevue. My daughter was a real trooper, picking me up at 5:30am so we could be there by 6am. I was prepped by 8am and the doctor, kindly did the pre-op physical, as there had not been enough time to schedule it before. The anesthetic knocked me out, and it made not only the events post surgery fuzzy, everything that occurred prior to surgery now seems surreal as well.

Out of surgery, I just remember that there was a lot of pain in my throat. The nurse gave me a vicodin which helped reduce the pain by about 80%. They discharged me at 11:30 and my daughter brought me home, got me set up in bed and I slept for 4 hours straight, getting up only to take my Tarceva and a second dose of pain reliever. The voice, however, was not much improved. Probably due to the trauma of the surgery--they had to intubate me for breathing purposes, in addition to putting a scope down my throat to see what they were doing, and inserting the large metal syringe which contained the injection material. All of those had to fit down my throat. Good thing I have a big mouth, eh? And also a good thing that I have all my teeth. Sometimes implants can get cracked off during this procedure.

My friend, A, brought by some Pho soup, which was my first food of the day and truly delicious. I am to eat soft things for the next few days to coddle my throat as well. And this morning there does seem to be a bit of improvement, although it's not much. So I am waiting to see if my voice comes back.

While waiting, I thought I would share with you these bumper stickers that a friend from work sent me to cheer me up. They did. And I hope they will for you as well.



If at first you do succeed, try not to look astonished.

Telepath wanted: you know where to apply

Jesus loves you... everyone else thinks you're an asshole.

Watch out for the idiot behind me

I'm driving this way just to piss you off

Lord save me from your followers.

I said "no" to drugs, but they just wouldn't listen.

Sex on television can't hurt you... unless you fall off.

I drive way too fast to worry about cholesterol.

Depression is merely anger without enthusiasm

Eagles may soar, but weasels don't get sucked into jet engines

Early bird gets the worm, but the second mouse gets the cheese

I almost had a psychic girlfriend but she left me before we met

I intend to live forever - so far, so good

Dont piss me off- I am running out of places to hide the bodies

Which is the odd one out- Texas, Alabama, Arkanas, Tolerance?

Ban toilet cleaner- Germs have feelings too

Be nice to your children- they choose your nursing home

When everything's coming your way, you're in the wrong lane.

Ambition is a poor excuse for not having enough sense to be lazy.

24 hours in a day ... 24 beers in a keg ... coincidence?

Everyone has a photographic memory. Some just don't have film.

What happens if you get scared half to death twice?

I used to have an open mind but my brains kept falling out.

Wear short sleeves! Support your right to bare arms!

All those who believe in psychokinesis raise my hand.

I tried sniffing Coke once. The ice cubes got stuck in my nose.

Reality is for people with no imagination

Rehab Is for Quitters

I'm out of estrogen and I've got a gun.

Stupidity is not a handicap. Park elsewhere!

Ham and eggs - A day's work for a chicken; A lifetime commitment for a pig.

The trouble with life is there's no background music.

Quoting one is plagiarism. Quoting many is research.

My husband and I divorced over religious differences. He thought he was
God,and I didn't.

Honk if you love peace and quiet.

You never really learn to swear until you learn to drive.

Monday is an awful way to spend 1/7th of your life.

Advice is free: The right answer will cost plenty.

Everyone is entitled to my opinion.

I used to be indecisive; now I'm not sure.

Hard work has a future payoff. Laziness pays off now.

Despite the cost of living, it's still popular.

Living on Earth is expensive, but it does include a free trip around the sun.

You're just jealous because the voices only talk to me.

Always remember you're unique, just like everyone else.

Consciousness: that annoying time between naps.

Clones are people two.

WANTED: Meaningful overnight relationship.

Atheism is a non-prophet organisation.

Kids in the back seat cause accidents; Accidents in the back seat cause kids.

Incontinence Hotline...Can you hold, please?

Honk If You Want To See My Finger!

Very funny, Scotty. Now beam up my clothes

I don't suffer from insanity. I enjoy every minute of it.

I know what you're thinking, and you should be ashamed of yourself.

Don't drink and drive, you might hit a speed bump and spill your drink.

All Men Are Animals, Some Just Make Better Pets.

Some people are only alive because it is illegal to shoot them.

Eat Well, Stay Fit, Die Anyway.

Friends help you move house. Real friends help you move bodies.

There's too much blood in my caffeine system.

Why is "abbreviation" such a long word?

All generalizations are false.

I brake for fairys, elves, gnomes, the toothfairy, the easter bunny,santa and other little creatures that only I can see

Men are not pigs. Pigs are sweet, intelligent, sensitive, clean animals.

Where there's a will, I wanna be in it.

Cover me. I'm changing lanes.

Dont laugh. Your daughter could be in here.

Never let school get in the way of your EDUCATION.

Hard work never hurt anybody, but then I figured why take the risk.

I'd give up chocolate, but I'm no quitter

What do you call kinky sex with chocolate? S&M&M

If con is the opposite of pro, is Congress the opposite of progress?

If 7-11 is open 24 hours a day, 365 days a year, why are there locks on the doors?

At night, monkeys steal my underwear

I got a dog for my husband. It was a fair trade.

Obsession is the word lazy people give to those of us who are motivated.

I'm talking to myself- please dont eavesdrop!

God must love stupid people- she made so many.

If you can read this I'm not going fast enough.

Vocal cord implantation set for this Monday

I met with an otolaryngologist at Group Health in Bellevue, Dr. S. And his operating team was able to fit me into his operating schedule for Monday at 6:00 am. So hat's off to them!! For me, this is terribly exciting news because it means I stand a good chance of getting my voice back. At least in part.

He will inject the paralyzed vocal cord with a substance other than collagen. I think it is Radiesse or calcium hydroxylapatite, which will expand the paralyzed vocal cord out, so that my functioning vocal cord can close the gap and I can speak normally, rather than in the raspy whisper that I have been communicating with since late August of this year. And, as long as I don't hold my standards too high, I may also be able to sing again. This substance, if properly done, will last two years, which is longer than the collagen would last. And should not cause adverse reactions, which teflon, which they used to use for these type of injections, did.

There's another article about this procedure here. It has a picture of what true left cord vocal paralysis looks like, which I won't reproduce on these pages, just in case there are some who are faint of heart.

Fingers crossed for Monday.

Acne at my age: adolescence without the benefits

This was me in junior high. Spring of 1965 or 66 depending on whether I was in 7th or 8th grade. As I recall, I had some zits, but nothing that I couldn't deal with (although I remember days when I wanted to stay home from school because I was sure that the pimple erupting on my chin had a neon light attached to it blinking on and off. These days, it's not quite the same. I can't say I'm not as vain, but I try not to obsess about it. After all, it's a good thing that this is showing up, right? As you may recall the oncologist informed me that on my new chemotherapy, Tarceva, one of the side effects--if it was working--was acne.

What I forgot is how much pimples hurt. And my nose is extremely tender right now. So avoiding the clown analogies for now, I will close with another photograph of me from freshman year in high school and figure that this too, like acne, and like youth, will pass.

Dana Reeve

My friend, O, in San Rafael, CA, mentioned Dana Reeve to me in an email tonight. It was a story that I may have read, but forgot about since three and a half years ago, it held no significance to my life. That was then and this is now.

Dana Reeve was the widow of Christopher Reeve, the actor who embodied Superman to a generation. She valiantly tended to him after his tragic horse accident rendered him a quadriplegic. He died in 2004, nine years after his accident. She was diagnosed with stage IV lung cancer in 2005, dying in March of 2006, days before turning 45. She was a non smoker. Her sister, a pathologist, wrote an essay about her for the Summer, 2007 issue of Cure Today.


I'm not sure how much further we have come in the treatment of this disease in the intervening 3-4 years.