Wednesday, December 30, 2009

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:

Wednesday, December 23, 2009

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.

Tuesday, December 22, 2009

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.

Monday, December 21, 2009

For Coozledad

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

Sunday, December 20, 2009

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.

Thursday, December 17, 2009


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
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.

Tuesday, December 15, 2009

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.

Monday, December 14, 2009


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.

Friday, December 11, 2009

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.