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.

Lung Cancer, the ugly stepchild

I've been thinking about this for a while, and actually wrote to a coworker today about how there is no Susan G. Komen race for the cure for lung cancer. No little pink ribbons we all can wear to show our solidarity with lung cancer sufferers. Nothing, nada, zip. I think it is because of the association with smoking--there is shame there that those diagnosed with lung cancer made their own bed and now have to lie in it. But this ignores some fundamental truths, as in over 50% of those diagnosed w/ lung cancer have quit smoking.

In my case I quit 29 years ago, as a wedding present to my then husband. It made for a shitty honeymoon (as did the fact that we camped out on St. John's Virgin Island because the ex didn't want to spend the $ for a hotel--nothing like cold his and her separate showers in the communal restrooms after you wake up and after you sweep the termite trail from your tent). Rum was cheap while food was very expensive but of course, since I had just quit smoking, forget getting drunk. Then he came down with a version of poison ivy from something called a machineo tree and all bets were off. Advice to those engaged: spend what it takes for a nice time. It does your marriage no good to start out in the fashion I did.

At any rate, back to today's reality, here are some statistics about lung cancer courtesy of National Lung Cancer Partnership. I think the last one is a real tragedy:

Lung Cancer in the United States: Facts

*Approximately 219,000 people are diagnosed with lung cancer in the U.S. each year – over 103,000 women and nearly 116,000 men.1

*Lung cancer kills more than 160,000 people annually – more people than breast, colon and prostate cancers combined.1

*Lung cancer is responsible for more than 28% of all cancer-related deaths every year.1

*Smoking is the primary cause of lung cancer. Approximately 87 percent of lung cancer cases occur in people who are currently smoking or have previously smoked.2

*Although the risk of developing lung cancer goes down with smoking cessation, a significant risk remains for 20 years or longer after quitting.2, 3

*Approximately 50 percent of all lung cancers (106,500) occur in people who have already quit smoking.4

*Radon exposure is the second leading cause of lung cancer, and the leading cause of lung cancer among never-smokers.5

*More people who have never smoked die from lung cancer than do people from AIDS or liver cancer or ovarian cancer.6, 7

*Risk factors for lung cancer other than those from smoking include lung scarring from tuberculosis, and occupational or environmental exposures to radon, second-hand smoke, radiation, asbestos, air pollution, arsenic and some organic chemicals.1

*Only 16 percent of lung cancer patients are diagnosed before their disease has spread to other parts of their bodies, (e.g., regional lymph nodes and beyond), compared to more than 50 percent of breast cancer patients, and 90 percent of prostate cancer patients.1, 8

*Men’s mortality (death) rates from lung cancer began declining more than 20 years ago, while women’s lung cancer mortality rates have been rising for decades and just recently began to stabilize.9

*African Americans experience the highest incidence of lung cancer, and the highest death rate.10

*Roughly 84 percent of people diagnosed with lung cancer die within five years of their diagnosis, compared to 11 percent of breast cancer and less than 1 percent of prostate cancer patients.1

*Less money is spent on lung cancer research than on research on other cancers. In 2007, the National Cancer Institute estimated it spent only it spent only $1,415 per lung cancer death compared to $13,991 per breast cancer death, $10,945 per prostate cancer death, and $4,952 per colorectal cancer.1, 11


References Cited

1. American Cancer Society. Cancer Facts and Figures 2009. Atlanta: American Cancer Society; 2009.
2. Satcher, D., T.G. Thompson and J.P. Kaplan, Women and smoking: a report of the Surgeon General. Nicotine Tob Res, 2002. 4(1): p. 7-20.
3. Ebbert, J.O., et al., Lung cancer risk reduction after smoking cessation: observations from a prospective cohort of women. J Clin Oncol, 2003. 21(5): p. 921-6.
4. Tong, L., M.R. Spitz, J.J. Fueger, and C.A. Amos, Lung carcinoma in former smokers. Cancer, 1996. 78(5): p. 1004-10.
5. National Research Council, Health Effects of Exposure to Radon: BEIR V. National Academy Press, Washington, DC, 1999.
6. MMWR Morb Mortal Wkly Rep. 2005; 54(25):625-628
7. Hoyert, D.L., M.P. Heron, S.L. Murphy, H. Kung. Deaths: Final Data for 2003. National vital statistics reports; 54(13). Hyattsville, MD: National Center for Health Statistics. 2006.
8. American Cancer Society, Breast Cancer Facts & Figures 2005-2006. Atlanta: American Cancer Society, Inc.
9. Jemal, A., R.C. Tiwari, T. Murray, A. Ghafoor, A. Samuels, E. Ward, E.J. Feuer, and M.J. Thun, Cancer statistics, 2004. CA Cancer J Clin, 2004. 54(1): p. 8-29.
10. Centers for disease Control and Prevention, Health, United States, 2006 National Center for Health Statistics: Atlanta, GA. p. 180, 244.
11. National Cancer Institute Snapshots: http://planning.cancer.gov/disease/snapshots.shtml

Changing Directions

We met with the oncologist today. I let my daughter take the lead. She is much nicer than I am and she has a firm grasp of what is going on, and she's very very smart. I am truly a fortunate mother.

We started off with the major problems I have had in not feeling supported by him or Group Health. He took responsibility for the problems in a very admirable fashion--I have to say I was not expecting this. What came clear in the discussion was that using a 'nurse navigator' was more of a hindrance to patient/physician communication than it was a help. Because I think he relied on it to take care of communications that I felt were his responsibility.

To begin with, I don't think Group Health has really defined the nurse navigator role well. Is the nurse navigator a patient advocate or an assistant to the doctor? There are conflicts there.


Another problem with having a nurse navigator between me and the doctor was that the communications became a little bit like that old game of Telephone where the message is distorted by the time it gets to the end. This was highlighted when, according to the doctor, the nurse navigator reported back to him, after she called me last Thursday, that I was grieving but it seemed normal, and that I seemed to be working things out ok. He relied on her assessment and also the fact that she reported to him that she told me I should call him if I had any questions--something that I do not recall from our conversation at all.

We told the doctor, that if there was bad news to be relayed, I wanted it to come from him. Even if it was not complete, at least we could speak in hypotheticals and he could answer the questions that the nurse navigator could not. I would be assured that he was being an advocate for me, looking out for my interests. He seemed to think that he should not really contact me until he had all the information. I told him that was not good, the fact of calling me conveyed care and support even without all the answers, and that was the type of reassurance that I needed at that point.

As an attorney, I have seen a number of studies that attribute a large percentage of medical malpractice lawsuits to bad communication between doctor and patient. My experience last week confirms those studies. Bad news is what it is, but the manner in which it is conveyed can make a significant difference in patient comfort level.

So then we got down to brass tacks. It is not good news. The immunohistology report shows that it is lung cancer in the subclavicular lymph node. Surgery is now out as an option. Radiation? Only as a holding measure. What he and the doctor from Seattle Cancer Care recommend at this point (and this was good--he called the doc from SCCA even before he got word from the nurse navigator that I wanted him to) is that I switch chemotherapeutic agents from intravenously administered cisplatin and pemetrexed every three weeks, to Tarceva pills. One a day for the conceivable future.

Tarceva has been shown to work best in nonsmoking Asian females--the success rate is about 40% in that cohort. With the full range of lung cancer patients it drops to about 14%. And it does not cure, it simply keeps things in stasis. So the best outcome from using Tarceva would be that the cancer doesn't spread further. The side effects are lowered blood counts, some affect on the liver, and acne. Lots of acne. Face, shoulders, back. And if I get the acne, that is an indicator that it is working. We're going to try it for two months and do lab work after one month, then a CT scan after two months to see where the cancer is. If that doesn't work, we move on to a third chemotherapy. Another one that begins with "t" because it comes from the Taxol family too, but I forget the name. This is more toxic to the cancer and has a better success rate, about 40%, but its significant side effect is arthritis. A Hobson's choice.

Prognosis? He wouldn't give me one right now. He said ask me in two months. If it does progress the symptoms will include increasing shortness of breath, and pain. Pain in bones. So let's hope that this Tarceva does the work. At least I meet two of the three criteria for the group it has worked best in.

Here is an example of the type of odds I am up against.

Group Health cancelled my appointment today

I got a call on my cell phone at noon today as I was meeting a friend for lunch downtown. I let it roll into my answering machine once I determined that it was Group Health because I thought, "I bet they are cancelling my appointment." Sure enough that was the message on my phone. Apparently they had a power outage that caused them to cancel ALL outpatient visits today. No rescheduling at at all.

I contacted my daughter and told her to handle it for me. She called and the rescheduled appointment is set for tomorrow at 3. No sense of urgency here. No sense of real care. They used to call Boeing the "Lazy B Ranch." I've also heard Group Health referred to unflatteringly as "Group Death." I used to protest about that. Now, maybe, not so much.

For Coozledad

It is now framed and hanging in my dining room. Thank you so much. The photo does not do it justice.

Working on a slow boil (warning--rant here)

I've written before about the problems I had early on in dealing with Group Health. I had thought that we had worked through those problems and were operating as a unit to overcome the cancer.

Well, the last four days have been an agony of unknowing for me because of the way that the biopsy results were conveyed to me. And it is, in some respects, a continuation of the earlier issues.

The first major problem, to my mind, is how Group Health conveys bad news to the patient. When the initial diagnosis came out, it was the ENT doctor, someone I had seen once, who told me I had cancer. I'm sure that he meant to be comforting, but when he said it was good that I attended church because that would help me get my affairs in order, that without any additional information concerning the cancer or the stage it was at, meant nothing more than I was gonna die, good thing I had someone to clean up the mess. In the more recent situation, the news that the lymph node was cancerous, was given to me over the phone by the nurse navigator, who prefaced her remarks, with, "I'm sure you want to know what the preliminary results are," or words to that effect. Well, yes, if it is good news, tell on. But when it is cancer, stop, think. I'd prefer to have the news directly from the oncologist (I realize no one likes to be the bearer of bad news, but if you choose to be an oncologist, don't you sorta know that you're going to have to deliver bad news?)because he can give me more thorough explanations of diagnosis and treatment, right?

Group Health's second major problem in this regard, is that they seem to have a process of providing this negative information to me in a vacuum. The only information available Thursday was that it was cancer. Period. The immunohisto chemistry report of the lymph node tumor is not available to me until I finally meet with the oncologist this coming Tuesday, fully a week after the biopsy was done. Whether it really takes that long to get all the information back, I don't know. But don't give me half of the answer, particularly when it is bad news, because the uncertainty is crippling.

Which raises the third issue that we seem, once again, to be moving with glacial slowness to address my disease. Do we need a PET scan? Will that require weeks of waiting like the last time? WTF?

And the fourth problem seems to be professional jealousy. I told the nurse navigator during the phone call, as I was trying to keep a grip on myself, that I wanted the lung cancer specialist at Seattle Cancer Care Alliance consulted at this point about diagnosis and treatment. Her response was, "Well he didn't want to do the lymph node biopsy at the time." Hello, neither did my GH oncologist--as I recall he described the small pinprick of light emanating on the PET scan from the left side of my neck, as a 'ditzel,' something to be treated as an outlier. It was only when I noticed the mass on my neck several weeks ago that the biopsy was done AT MY INSTIGATION. This is my life at stake, and I don't want petty professional jealousies to fucking interfere with making the correct decisions on diagnosis and treatment.

The last four days have been exquisitely painful, truly blindly waiting with nothing but dread to keep me company. Tuesday will not be pretty.

Damn

Biopsy is positive for cancer in the lymph node. Full report next Tuesday. All bets are off.

Why do all the fruitcakes come out at Christmas?

Food did not used to be a controversial subject with me. I'd eat practically anything. Except Welsh rarebit (melted cheese on saltine crackers). And, after 20+ years of kids, pepperoni pizza had seriously lost its appeal as well.

These days, every meal is a challenge to find something that tastes ok. Lately it has been protein. Burgers, crab meat, salmon, roast beef. Cheese, which was a staple, tastes like wallpaper paste, unless it is a very sharp variety. I'm almost embarrassed to admit that I'm eating olives and dill pickles like popcorn (shades of pregnancies past)!

And of course, this is the season for baking and cooking up a storm. I made bourbon balls two nights ago with the (huge) assistance of my daughter. I had not made any for probably 20 years and it felt good to make them. My daughter also made caramels using my mother's recipe. Then, combining the recipes, we dipped some of the caramels in the melted bittersweet chocolate from the bourbon balls, and added a dusting of kosher salt to the top, just like Fran's salted caramels. I am told that they are very good, but I can't really judge their taste at present.

However, in the spirit of the season, I found the following recipe for fruitcake that I got many years ago from friends of my parents, and I share it with you so your holiday baking can be complete:

Marilyn and Randy's
Favorite Fruitcake Recipe

1 C Butter
1 C Salt
1 C Sugar
Lemon Juice
4 Large Eggs
1 C Brown Sugar
1 C Dried Fruit
Nuts
1 t Baking Powder
1 or 2 Quarts Whisky
1 t Baking Soda

Before you start, sample the whisky to check for quality. Good isn't it? Now go ahead. Select a large mixing bowl, measuring, cut, etc. Check the whisky again as it must be just right. To be sure the whiskey is of the highest quality, pour 1 level cup into a glass and drink it as fast as you can. Repeat.

With an electric mexer, beat 1 cup of butter in a large fluffy bowl. Add 1 teaspoon thugar and beat again. Meanwhile, make sure that the whiskey is of the finest quality. Cry another tup. Open second quart if necessary. Add 2 arge leggs, 2 cups of fried druit and beat till high. If druit gets stuck in beaters, juss pry it loose with a drewsriver. Sample the whiskey again, thecking for tonsicisty, then sift 2 cups of salt or anything, it really doesn't matter. Sample the whiskey. Sift 1/2 pint lemon juice. Fold in chopped butter and strained nuts. Add 1 babblespoon of brown thugar, or whatever color you can find and wix mell. Grease oven and turn cake pan to 350. Now pour the whole mess into the coven and ake. Check the whiskey again and bo to ged.

Improv everywhere and holiday handbells

I am quite a fan of Improv Everywhere. Their zany and sometimes outrageous antics have brought a smile to my face on more than one occasion. Gentle anarchism! Fun for the whole family! Participatory thespianism! You should go to their site and check out their zaftig stagings, designed to pull unsuspecting bystanders in with them. They're partially listed on the right hand of their home page.

But this one brought me to tears this morning. It's truly a sweet sanity check for a season, that seems to be going crazy at the seams right now.

Waiting.

Of course, where I can get in an offhand Firesign Theater reference, I will.


Well, it's that season of the year, Advent, so I should be resigned to waiting. But I am not a patient person. As I've mentioned before, I read the ends of books when I get tired of the pace and just want to find out what happens. I've been doing that more of late. Much that it helps the current situation.

I received a call from Group Health this morning and the biopsy of the swollen lymph node in my neck will be done at 10:15 this Wednesday. So I wait for that as well. The reactions to the third round of chemo seem to be just a touch more dizziness. The tinnitus is ever present. But I can ignore it fairly well. What I don't like is the "chemo brain," where I forget if I took all the medications I was supposed to or misplace a Christmas present. At thanksgiving, we had to stuff and restuff the turkey twice because I forget essential ingredients! Better organization perhaps.

Last night, in a probable energy surge occasioned by the steroids, I cleaned out some of boxes stored in the garage (I moved to a smaller house 4 years ago and have not done all that could be done yet to downsize). I focused particularly on the boxes that contained old toys, and repackaged them to go to Francis House, a wonderful charity that offers clothing, household items and other needs to those who really need it. Without charge. My amazing 91 year old next door neighbor, MB, has volunteered there for years and her house serves as a pick up point for the Francis House van, Monday morning, so my son helped with the final sort and he and I carted 12 boxes and bags over to her carport after we were done slimming things down (though many children's books were kept).

It was bittersweet, going through the old toys, stuffed animals, and books, and reflecting on how quickly time has passed, and how I took so much for granted over the years. And, to be honest, how much stuff we gave the kids as presents over the years! I hope that some of this can be put to good use by other children. It helps the waiting.

Third Movement

The third chemotherapy session was yesterday. It went without incident. It was preceded by a CT scan with contrast on Wednesday which was done to show the progression/regression of the cancer. In addition, last week, I discovered a swelling on the left side of my neck that appeared to be a lymph node and so a neck view was added to the CT scan.

The scan was done at 8:30 in the morning. This time they were able to use the port to inject the contrast material. The metallic taste as they did so was more pronounced. But it went without a hitch.

When my daughter and I met with the oncologist, Dr. N, at 4pm, the results were mixed. The two tumors in my lower left lobe ("G" and "C," have shrunk approximately 30%). But there has been no change in the tumor that has settled on my vocal cord nerve ("R"), so a fourth chemotherapy was recommended. This one will be, again, 3 weeks from Thursday, which means my New Year's eve will be very, very quiet. In addition, my daughter suggested and I requested a punch biopsy of the neck swelling, as the CT scan was not able to be definitive as to whether there was cancer in the lymph node or not. I am hoping for the "Not" because if it is, that would mean that I am actually stage 4 rather than stage 3B and they would change the care from aggressively curative to palliative. The other bad news was that the Dr. thinks there has been damage to the vocal nerve.

Assuming we continue on the same pathway, though, it looks like radiation will be coming after the completion of chemo. And possibly an excision of the lower left lobe of my lung (lobectomy--bye bye G and C!). The surgeon would surgically remove that part of the lung. Not what this summer swimmer wants to hear, but I understand that the remaining 3 lobes compensate pretty well for the lost one.

To Fight Aloud is Very Brave
by Emily Dickinson

To fight aloud is very brave,
But gallanter, I know,
Who charge within the bosom,
The cavalry of woe.

Who win, and nations do not see,
Who fall, and none observe,
Whose dying eyes no country
Regards with patriot love.

We trust, in plumed procession,
For such the angels go,
Rank after rank, with even feet,
And uniforms of snow.

So Thanksgiving turned out to be very special

This is me, Thanksgiving evening, at the home of friends, realizing that the guy in the doorway is my son, who suprised me by flying home all the way from Providence, RI.






This is me greeting said son.








And this is me with my three kids, who are actually young adults. Wonderful young adults.




My daughter and oldest son cooked this scheme up back in September and they were so good at keeping secrets and (dare we say?) lying about stuff. I was completely bamboozled, and thought that my son was spending Thanksgiving dinner in NYC with the ex who was there on business. But about 30 minutes after arriving at our dear friends' house, who we've spent almost every Thanksgiving with for the past 26 years, my daughter's pager went off, and she told me, "I've got to get to the hospital. The cystic fibrosis patient I've been following is about to go to surgery for a lung transplant and I promised I would see her before she went into the OR." She said she would be back in about an hour and we all bid her adieu. What actually happened is that youngest son had called her beeper and triggered it, setting everything in motion. So an hour later, I was absolutely floored when the door opened and it was my daughter and oldest son! Everyone was very good about keeping mum about it.

And we had a wonderful weekend together. Lots of food, laughter and teasing. Went to downtown Seattle Saturday for the annual ritual of looking at the lights, the gingerbread houses and the decorated trees. Only thing missing was the trip to Nordstorm's Santa, which all except me objected to. So I contented myself with taking their picture in front of a Nordstrom's holiday window.



It was absolutely grand.

I hope all of you had as wonderful a Thanksgiving as I did. I am so blessed.

What I am thankful for

Friends and Family, first and foremost.


But after that comes Humor!!


Specifically,

1. Monty Python:







Monty Python "What have The Romans ever Done for Us?"

and

2. Firesign Theater:







Bet you didn't know Firesign Theater was currently posting new zanies on youtube:

Firesign Theater's Revenge of the NonSmokers

One of the schticks Firesign Theater did on one of their albums (back in the day) was "Beat the Reaper." A contestant was injected with some sort of dreadful, fatal illness and if he identified the disease in time he was given the antidote. If not, well, then he lost.... Sort of like the tv show, House, MD today, but quicker and with a bit more humor.

And of course, because it is Thanksgiving, I am reprising my turkey recipe.




Have a relaxing holiday with your loved ones. And don't forget the pope's nose!

How pumpkin pies are really made

Thank you to my dear friend, C, for making me laugh today.

I appreciated all the snail mail and email felicitations yesterday, which made the day a bit more festive. Although, Max, the black lab, ate a bit too much grass when my son took him on his walk, with the expected result on my living room rug when he returned. Not the best thing to clean up when you're feeling queasy to begin with. But made it through and the birthday dinner and cake with my kids that evening was wonderful.

So today, the day after, is not unexpectedly, a bit of a downer. It's going on a month since chemotherapy started and I'm not coming back as quickly from this session as I did the past one. Although I've been pretty good about not "going there" in my thinking, I'm starting to wonder if the chemotherapy will have an effect on my condition. It's the 800 lb purple elephant in the living room that no one wants to mention. Or maybe it's the pumpkin pie getting made.