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.

Fleurs d'Automne

When I was a young, relcacitrant practiser of the piano, there were few composers that could really keep me riveted to my seat playing their compositions. Vladimir Rebikov was one of them. He was of the Russian romantic school at the turn of the last century if I recall correctly. I hope you enjoy these as much as I did.

Fleurs d'Automne

Rebikov's Dance of the Chinese puppets

Here's a little bit more about him from Wikipedia:

Vladimir Rebikov

Yesterday my caffinator friends from church came over and planted spring bulbs in my yard for my birthday and for something to look forward to. It was nice and they didn't complain too much about all the dog doo that someone had yet to pick up (oops).





Afterwards, A, had made a homemade NY cheesecake and we all shared in that--they with appetites honed by being outside, and me just grateful to have such good friends. It made for a welcome respite from the cold and grey outside.

Thank you all.

Second Movement

My second chemotherapy was Thursday November 19th. My friend, A, drove me to Group Health and I went through the same drill. Only difference was I was in a double suite. The injection, as contrasted to the day before for the blood draw, really hurt. The nurse suggested I purchase and bring some topical lidocaine next time to dull the pain. However, after she hooked me up to the sedative, the pain and reality, to a certain extent, retreated. I had my wonderful bracelet on and I brought with me a traveling DVD player that my girlfriends from college had sent to me. My friends D, and P and my daughter visited me in the hospital. I brought several DVDs to watch, but my daughter and I watched "Love Actually," mostly at home after I was discharged, because the sedative really made me worthless for the period of the hospital stay. Which was actually fine. You don't want to think about what is going into your body too much.

The negative after effects started sooner than the first time, probably due to my lowered white count, among other things. The white count was 2.4, where normal is almost double that. This lowered white count is also responsible for a flare up of the thrush. And a spot of dizziness Saturday night that persisted into Sunday morning but seems to have cleared up later Sunday.

The chemotherapy means that I have to use medication to try to restore my body's healthy functions which have become collateral damage in the tumor war. So there are: a) the growth factor shots, b) the acetaminophen for the flu like symptoms from the growth factor shots, c) the Zofran for nausea, d) the Flucanazole for the thrush, e) the folic acid, and f) the prune juice and Miralax to get the plumbing moving again, among other things. I swore I would not be one of those old ladies who had so many drugs, their days were governed by their prescription dosages and times. Guess I have to eat a bit of crow on that.

But the good news, for now, is that my hair is hanging in there (knock on wood) although the hats everyone has knitted for me are soft, warm, cozy, and quite attractive. I'm vain enough to want to keep the hair. I think every woman does. This is me on Nov. 1, courtesy of my friend D, the photographer from KY.





If things go as planned, I will hit the wall tomorrow. My 57th birthday. Figures.

Waiting: The Night Before the Second Movement

I Am Waiting

by Lawrence Ferlinghetti

I am waiting for my case to come up
and I am waiting
for a rebirth of wonder
and I am waiting for someone
to really discover America
and wail
and I am waiting
for the discovery
of a new symbolic western frontier


and I am waiting
for the American Eagle
to really spread its wings
and straighten up and fly right
and I am waiting
for the Age of Anxiety
to drop dead
and I am waiting
for the war to be fought
which will make the world safe
for anarchy
and I am waiting
for the final withering away
of all governments
and I am perpetually awaiting
a rebirth of wonder


I am waiting for the Second Coming
and I am waiting
for a religious revival
to sweep thru the state of Arizona
and I am waiting
for the Grapes of Wrath to be stored
and I am waiting
for them to prove
that God is really American
and I am waiting
to see God on television
piped onto church altars
if only they can find
the right channel
to tune in on
and I am waiting
for the Last Supper to be served again
with a strange new appetizer
and I am perpetually awaiting
a rebirth of wonder


I am waiting for my number to be called
and I am waiting
for the Salvation Army to take over
and I am waiting
for the meek to be blessed
and inherit the earth
without taxes
and I am waiting
for forests and animals
to reclaim the earth as theirs
and I am waiting
for a way to be devised
to destroy all nationalisms
without killing anybody
and I am waiting
for linnets and planets to fall like rain
and I am waiting for lovers and weepers
to lie down together again
in a new rebirth of wonder


I am waiting for the Great Divide to be crossed
and I am anxiously waiting
for the secret of eternal life to be discovered
by an obscure general practitioner
and I am waiting
for the storms of life
to be over
and I am waiting
to set sail for happiness
and I am waiting
for a reconstructed Mayflower
to reach America
with its picture story and tv rights
sold in advance to the natives
and I am waiting
for the lost music to sound again
in the Lost Continent
in a new rebirth of wonder


I am waiting for the day
that maketh all things clear
and I am awaiting retribution
for what America did
to Tom Sawyer
and I am waiting
for Alice in Wonderland
to retransmit to me
her total dream of innocence
and I am waiting
for Childe Roland to come
to the final darkest tower
and I am waiting
for Aphrodite
to grow live arms
at a final disarmament conference
in a new rebirth of wonder


I am waiting
to get some intimations
of immortality
by recollecting my early childhood
and I am waiting
for the green mornings to come again
youth’s dumb green fields come back again
and I am waiting
for some strains of unpremeditated art
to shake my typewriter
and I am waiting to write
the great indelible poem
and I am waiting
for the last long careless rapture
and I am perpetually waiting
for the fleeing lovers on the Grecian Urn
to catch each other up at last
and embrace
and I am awaiting
perpetually and forever
a renaissance of wonder

I went in to Group Health today for a series of appointments the day before chemotherapy. I visited the speech pathologist to revisit my vocal exercises which are designed to make my frozen vocal cord do a little bit of work, and hopefully make it recover quicker once the tumor has shrunk and is not pressing on the nerve. I also picked up a 7 day prescription for Flucanozole--the doctor has decided that I should be taking the thrush medication for the next week to stave it off, as I've started the steroids again to help me more fully absorb the chemotherapy. He approved me for the shingles vaccine, but the injection room told me that they are barred by the Center for Disease Control from adminstering it to anyone under the age of 60. Even if said person has had chickenpox as a child and is immuno-compromised.

Then I went to lunch at Chutney's on Capitol Hill with my friend, A.L., who was kind enough to be my taxi driver and share most of my day with me. We had almost 2 hours to kill between the above and the final appointments of the day. It was a good meal with a good person, and I enjoyed it very much.

After our lunch, I had the blood draw and met with the nurse navigator, and finally with the oncologist. Couple of things.

My white blood count is low. So low, that the oncologist prescribed self injections of Filgrastim (Neupogen) or growth factor, to begin the day after chemotherapy. It will stimulate the production of white blood cells by the bone marrow. He said that it will cause flu-like symptoms, so I will need to take Tylenol beforehand. I can't take aspirin, naproxen sodium (Aleve) or ibuprofen, so it's just Tylenol. Together with the nausea and the thrush, it should be the mother of all flus. Unless I religiously take all the prescribed meds.

It seems that I am going to have to create a chart of all the drugs that I have to take and the times, to keep them straight and on track. I forgot to take tonight's steroid dosage til 8, so I may be zooming around the house late. Hope not because my chemo appointment is for 8:30 tomorrow morning.

I also have a slight wheeze when I breathe, but the doctor didn't think that was anything to worry about. I mentioned that I have a runny nose, and he replied that it could be a side effect of the chemotherapy. I didn't know that.

There's also apparently no way, aside from waiting in long lines, that I can get the H1N1 vaccine. There's been no attempt to prioritize who receives the vaccine first, and with the shortages, people are exhibiting panic-type behavior. There were 1,000 folks in line at a small pharmacy in my neighborhood for 700 doses last week. And this evening when I went by the pharmacy to inquire, they had had the vaccine again today, but had run out and were turning people away at 4:30. They will have half the doses they did today on Saturday morning and will be open to take applications at 7am and will begin administering them at 8am. First come, first served. My oncologist said there is nothing he could do for me on this at Group Health. So I working at from home, communicating with the office using an encrypted computer hook up. Which is generally do-able, as I can put documents in pdf and send them to the office.

And, the doctor has ordered a CAT scan at the conclusion of the second chemotherapy period--December 9 being the last day of the second chemo period. He gave me the option of scheduling it after the second or third (which would have been the week between Christmas and New Year's) chemotherapy, and I chose the second. I'm the kind of person who reads the endings to books if I get tense about where it's going and can't stay up to finish them, so I'm no different here. We can always do an additional CAT scan again after no. 3 if the results aren't to our liking.

I'm not a big fan of waiting.

The Cone of Shame

Truffle was spayed last Friday, but she still must wear "the cone of shame" because she can't stop licking the incision site, which irritates it and could possibly lead to infection. The cone impedes her progress on stairs, so she has to be carried up each time she ventures in to the basement or comes in from the back yard. Sometimes even if the cone is off, she will sit at the bottom of the stairs and whine. I foresee a period of re-education. She gets her stitches out the same day as my second round of chemotherapy. Someone else will have to take her to the vet for that procedure. Hopefully that will be my son, who is staying with his dad right now, because he came down with a high fever Wednesday night, and Group Health was adamant that he relocate elsewhere and that I get a third party to come in and disinfect the doorknobs and light switches and other common surfaces. My friend, A, was most obliging in this regard.

Another interesting (read not so good) thing happened this week. Yesterday as I was out walking the dogs with a friend, I received a call from Bank of America. It seems that someone using my name and SSN had tried to get a BoA Signature Visa card. BoA got suspicious and called me. I do not have a BoA account--I closed it earlier this year when I consolidated all my financial stuff with another bank. Plus, according to the application, I am a paralegal at the firm, Bailey, Banks and Biddle (for those in the know this is a jewelry store) and my mother's maiden name was Junes, so there was no way that it could have been me.

By the time I returned home from the walk, it was after 5pm EST, so I could not call BoA back to obtain more information about the bogus application. But I did email and received a response from a friend in the Consumer Protection Division of the AGO, where I had worked for 8 years. I think the information he provided me is germane to all of us, because identity fraud is so widespread, so I will put it here.

To begin with I went online to one of the three big credit reporting agencies, Equifax. On their home page they show a link to reporting credit fraud.

I filled out the form, emailed it back to them and later that evening they emailed me that they had placed a 90 day credit fraud alert on my file and had forwarded the same to the other two credit reporting agencies, TransUnion and Experian.

However, there is still more I need to do per the AG's office. And note that although the following information does not say so explicitly, it is my understanding that there is a $10 fee at each credit reporting company to request a credit freeze:

If you are a Washington resident you can place a credit freeze on your credit report to prevent any additional credit or other accounts being opened in your name, and prohibit the credit bureaus from releasing information about you without your permission. Victims of identity theft may request a credit freeze free of charge. To “freeze” your report, you must first file a police report and then send a request by mail to the credit reporting agencies. We recommend sending your request by certified mail. Once you have notified the credit reporting agencies, they will have five days from receipt to put the freeze in place.

The law also allows individuals whose personal information has been compromised as a result of a security breach to place a freeze on their report. In order to put a freeze in place in this instance, you should notify the credit reporting agencies in writing by certified mail and include a copy of the notification that you received that made you aware that your personal information had been compromised.

A freeze is not 100% fail-safe as some creditors can and will issue credit without pulling a credit report. Firms with whom consumers have an existing business relationship will be able to obtain a report despite the freeze and a consumer’s information may be released for the purpose of prescreening as well.

If you choose to freeze your credit you should be aware that there is a process to unfreeze or “thaw” your credit. This process will delay your ability to obtain credit insofar as the credit reporting agencies have three business days to lift the freeze, once notified by mail, and 15 minutes through an electronic contact method. .

To request a credit freeze, you should notify the major credit reporting agencies and provide the information listed below:


Equifax Security Freeze
PO Box 105788
Atlanta, GA 30348
• Include: Name, current and former address, social security number, date of birth,and
proof of current address such as a utility bill
• Pay by check, money order, or credit card. Credit card (Visa, Master Card, American Express or Discover). Give name of card, account number, expiration date, and identification number from back of card.
• ID Theft victim must include: valid copy of the police report, investigative report or complaint filed with other governmental law enforcement agency report (such as DMV report)

Experian Security Freeze
PO Box 9554
Allen, TX 75013
(For overnight mail, use this address: Experian, 711 Experian Parkway, Allen, TX 75013)
• Include: Full name, with middle initial and Jr./Sr., etc., current address and home addresses for past two years, social security number, birth date
• Proof of government issued ID card (driver’s license, military etc.)
• Proof of current address such as utility bill, bank or insurance statement. (Not acceptable: credit statements, voided checks, lease agreements, magazine subscriptions, or postal service forwarding orders.)
• Pay by check, money order or credit card. Credit Card: give name of card, account number and expiration date.
• ID Theft victims must include: valid copy of police report, investigative report or complaint filed with law enforcement agency.

Trans Union Fraud Victim Assistance Department
PO Box 6790
Fullerton, CA 92834
• Include: Social Security Number, address, date of birth and other documentation, as requested.
• Proof of address, such as driver’s license or state issued ID card
• Pay by check or credit card.

Another option to protect against identity theft is to place a fraud alert on your credit report. However, merely placing a fraud alert on your account will not block the ability of a thief to open up lines of credit. You may place a fraud alert by notifying the major credit reporting agencies as follows:

The following major credit reporting bureaus:

Equifax - http://www.equifax.com/home/
To order your report, call: 800-685-1111 or write:
P.O. Box 740241, Atlanta, GA 30374-0241

To report fraud, call: 800-525-6285 and write:
P.O. Box 740241, Atlanta, GA 30374-0241
Hearing impaired call 1-800-255-0056 and ask the operator to call the Auto Disclosure Line at 1-800-685-1111 to request a copy of your report.

Experian - http://www.experian.com/to order your report, call: 888-EXPERIAN (397-3742) or write:
P.O. Box 2002, Allen TX 75013

To report fraud, call: 888-EXPERIAN (397-3742) and write:
P.O. Box 9530, Allen TX 75013
TDD: 1-800-972-0322

Trans Union - http://www.transunion.com/
To order your report, call: 800-888-4213 or write:
P.O. Box 1000, Chester, PA 19022

To report fraud, call: 800-680-7289 and write:
Fraud Victim Assistance Division, P.O. Box 6790, Fullerton, CA 92634
TDD: 1-877-553-7803

You may want to close the accounts that you know or believe have been tampered with or opened fraudulently. If the entity with whom the account has been opened does not have an affidavit of forgery, you can use one that is made available by the Federal Trade Commission at www.ftc.gov/bcp/edu/resources/forms/affidavit.pdf

You should also file a report with the Federal Trade Commission. The FTC maintains a database of identity theft cases used by law enforcement agencies for investigations. Filing a complaint also helps law enforcement learn more about identity theft and the problems victims are having so that we can better assist them. Thank you for contacting our office.

This was long, but if it can help just one other person out there, it will be worth it. It took two days, but this morning I was able to file over the phone a police report with the Seattle Police Department. The woman at the SPD gave me the incident number and said that I could get a written copy of the report by calling the Records Department and requesting one by the end of the week. So I am glad I put the intial credit fraud tag in place with Equifax. As we move into the season of shopping, it's good to have this information at hand.

An immigration story

In trying to get the facts right on the Armistice Day story that I posted November 11, I went through some old photos and documents that I have been safekeeping a long time now. One group of documents are letters and postcards that Gramps Fauster wrote to his second daughter, Alice, after she and her husband, Jim, moved to California after Jim's airplane company in Ohio closed. The letters and postcards span over a decade and are chatty and full of family news (he considered us Cullen kids to be badly mannered for one thing !). But one letter stands out. I've tried to attach it, but blogspot does not recognize pdf files, so I will provide it here:

May 12th – 54

Dear Alice
In your letter received today you said a John Schwartz was at your church.
When we lived in Archbold an old man by the name of John Schwartz told me the following:
He lived in Switzerland and went to a port in France to take a boat for America. He had no money but was told that funds would reach him there from one who was indebted to him. The boat was ready to sail and Schwartz’s money failed to arrive. He told his trouble to your grand father Fauster, a total stranger whom he had not seen before. Your Grandfather paid his passage to America. This happened in 1854. One hundred years ago.
Love,
Dad

Armistice Day

This is my paternal great grandfather, John Ulrich Fauster, MD. [I went back to some family records and have to correct the next few statements] His family emigrated from Schaffhausen, Switzerland, in 1854 (they tatted lace to make the money that they used to buy steerage over to America) Gramps (as he was known to me when I was a little girl) seems to have been born in the US and thus could serve in the US Army at the time of World War One. He was the doctor in Defiance, Ohio, a small town in northwestern Ohio, where I grew up. I wonder if, given his profession, and the fact that he was perhaps one of a very few doctors in the area, he was allowed to leave. He also had 5 children at the time, although at least one was over the age of majority.




This is my maternal grandfather, Claude Frederick Holst, MD. His family had emigrated from northern Germany to the US in the late 1800's as well. They dropped the "von" that had been the prefix to their surname to better fit in in the New World. He also served in World War One, and I know from stories that my grandmother told me, that he was sent by the military to someplace other than Little Falls, MN, where he was working with his brother, Burton, as the town's doctors. My maternal grandparents had only been acquainted a short while before he was sent off. My grandmother had come, after graduating as the valedictorian of her nursing school class at Marquette University, to Little Falls to start a nursing school at St. Gabriel's hospital there. My grandfather was quite a bit older than my grandmother (who had actually lied about her age to get the job), but something clicked (apparently a Sr. Teresa played matchmaker) and they married in June of 1920, postponing their wedding to assist in the aftermath of a tornado that hit somewhere near Little Falls. Or so I was told by my grandmother.




This is my paternal grandfather, Seth Cullen. He's the tall guy on the left with the friend that looks like George Costanza. His grandfather and namesake had emigrated from Nottinghamshire, England in the 1850's and was an itinerant Methodist minister. Seth was from Paulding, OH, and served in World War One, shipping out right after marrying my grandmother, April 12, 1918. He rode ambulances in France, on the outside at night, so he could direct the drivers, as they could not turn their lights on because they would be shot at by the "Jerrys." I read about this in the letters that he sent home to his parents. I found the letters in 1981 when I was back in Paulding for the funeral of his sister, my great aunt, Bernice Cullen Sullivan. I gave the letters to my grandmother and she threw them away. I will always kick myself for doing that. She had her reasons for discarding them, ones I discovered later after she died, when I inherited a five year diary she kept in the early 50s. They deserve a thread of their own someday. Let us just say for now that she and Seth ran off to Michigan and eloped, something incredibly uncharacteristic for the very straight laced grandmother I knew growing up. When Seth returned from France, he brought silk aprons for his mother and sister and a beaded evening bag for his wife. The apron he brought home for his mother is such a work of embroidery art that I had it framed and it is hanging in my house.



And this is my father, John William Cullen. He was drafted and served as a medic in the Army during World War Two. He was never sent abroad because his eyesight was too poor. Instead, he was stationed in South Carolina where he met a young woman he became briefly engaged to, but it broke up for reasons he never mentioned. Although he did say that her house had a separate entrance in the back for their black servants, which he found off-putting. After the war was over, he finished college at Miami University, went to medical school at Case Western, and met my mother while both were working at Yellowstone Park in the summer of 1950, and voila!

These are the veterans in my family. I remember them today and thank them for their service to our country.

"Thank you" does not fully cover it

On Sunday the husband of my friend, D, from work, and five of his friends came over from the eastside and cleaned up my yard in a very major way. They did this in 3 hours. It was an amazing gift.

They showed up at 10 am to my house armed with blowers, rakes, and other gardening implements of destruction. It sounded a bit like WW3 as motors were revved up, leaves were put in their place, weeds were pulled, dirt was hauled, roofs were cleaned, a fence was pulled, and trees and shrubbery were trimmed.

My youngest joined in the melee, going back to the store for more lawn bags when needed. He was quite taken with the efficacy of the blowers--plus I think the noise made it a 'guy' sort of thing as well.

They broke halfway through for Noah's bagels and Top Pot donuts I had picked up earlier in the morning together with hot cider and/or coffee, then it was back to work. By 1 pm they loaded everything back in their trucks/cars, we took the attached photos to celebrate, and they went off to the Roanoke to watch the Seahawks victory on television. And left me 16 lawn bags, 4 large garbage containers, and my yard waste container completely full. It was truly a thing of efficiency and beauty. I kept going out to the front of my house after they were gone to marvel at how clean and trim it all looked. Even in the dark it was a wonderful sight.

Thank you guys. This was extra special.

Thrush

Of course, the attached picture refers to the avian variety, not the physiological kind that appears to be the culprit in the continuing throat discomfort that I am experiencing. I won't post a picture of what the infection actually looks like, preferring the more musical reference instead. But it was apparent enough that my oncologist at Group Health didn't even do a culture to confirm, once he looked into my throat.

According to wikipedia, thrush's scientific term is candidiasis and it is a fungal or yeast infection. The last time I remember coming into contact with thrush was when the kids were babies. It was a condition that developed when they were nursing. Luckily they don't remember that time at all.

So I am on an anti-fungal, nystatin, that I get to swirl around and hold in my mouth every 6 hours. Apparently this is a side effect of the steroids that I was taking early on in the chemo cycle. We will hope that the cure is quick.

A lump in my throat

Over the past few days my throat has become a bit more inflamed and swollen. Not sure why, perhaps it's my stupendous weight loss program, but I am going in to have the oncologist check it out tomorrow. It constantly feels like I have a small platform resting on my esophagus and swallowing is a bit more difficult. I just don't want it get worse.

Monday was the worst day so far in this journey. You know it's bad when you can't finish brushing your teeth for fear of an eruption. I know now what to expect for the next round of chemo and maybe will request to be knocked unconscious for the first day without steroids (small, wan grin). So maybe the trolls didn't win but they scored deeply.

Down the Rabbit hole

Well it's been 4 days since the administration of the chemotherapy and this stuff is not for sissies.

I've had some good times this past weekend with friends who flew in to visit me from Denver, Kentucky, and even my friend from Klickitat County, but it all comes with a price tag. I had dinner with all of them at the home of another couple, both Saturday and Sunday and it was great fun, but very very draining. Still, I appreciated the love and effort they made to come see me. We're vowed to meet again in two years when things will be better and I can join in the touristy fun like seeing the Troll in Fremont as well as the statue of Stalin. And a ferry ride and going into the mountains to see the colors. Lots of things left to do.




As it is, I have a troll of my own in my gut. It keeps me constantly aware of my stomach and how I am feeling, which is not very well. I have a constant metallic taste in my mouth, the aftereffect of the platinum in the cisplatin chemotherapy and things just do not taste the same. Last night I woke up at 2:30 and could not return to sleep because, in part of the nausea, and finally took an anti nausea drug, which enabled me to sleep fitfully for an hour or two at a time. One of the side effects of the anti nausea drug, however, is constipation. So I am trading one problem for another. I've never used it before, but I have a large, industrial sized bottle of milk of magnesia on the side of my sink in the bathroom. It may be time to take out a troll or two...

Wherein Truffle earns her moniker

Okay, so today was a bit draggy. In fact, I even went back and took a nap in the afternoon. The anti nausea oral meds worked up until about 11, when I started feeling queasy and popped another one. However, they've only given me enough meds to last me through tomorrow and that is making me nervous particularly because I can aspirate any vomitus so easily given the permanent open position of my vocal cords.

I emailed my oncologist's office late in the morning, but have not received a response. I called the consult nurse late in the afternoon and they were able to refill one of the Rxs but not the other one. So I will have to find a friend to go to GH Northgate tomorrow to pick it up for me.

In the meantime, my youngest dog was making a nuisance of herself. Somehow a box of Mrs. See's chocolates had been left on the coffee table in the living room, unknown to me. When I got up from my nap, I kept hearing this nose snuffling and ruffling of papers coming from there. Further investigation showed that my little 8.2 lb puppy, Truffle, had knocked the box down from the coffee table, manage to chew the lid off and either had daintily eaten several...truffles....or had licked a fair number of them. A quick call to my vets, NE Veterinary, which is just around the corner from where I live, thank goodness, got me in to an emergency appointment at around 4pm. We showed up with the box as Exhibit A and Dr. R and his vet tech took a look at puppy and box and decided that she Should just be kept under close observation and not made to vomit. Which, I can tell you eased my insides considerably. Because I am afraid of the cascade effect.....

So I perambulated home with Truffle in tow, stopping to play with Alice the next door golden retriever, and to greet another attorney, also named L, from work, who was bringing me more gifts and work related items so I can continue to work from home. Good to get out of the house during a period of relative warmth even though it was between rain showers. But this is Seattle in the fall, and we take what we get.

End of the First Movement

The chemotherapy went without a hitch. The 3 anti nausea drugs they used worked, although I am becoming slightly queasy right now, perhaps a function of the time.

The use of the chest port certainly made things easier. The needle that they used has a barb on it, like a fishing hook. Luckily my skin was slightly anesthetized before it went in and afterward, felt nothing. Although there is an ache in that area right now. They began with some anti anxiety meds followed by anti emetics and a large bag of IV fluids before they even began with the chemotherapy agents. The pemetrexed came first. Then more IV fluids followed by the cisplatin. And more IV fluids. The nurse, V, was from New Zealand and we had several delightful conversations about her country, as I had been planning to hike the Milford Track or Trek this coming January with my friend T from Honolulu, until the cancer intervened. V will be taking of for quite a spell of time in December and part will be a visit to New Zealand. I am envious. But it's merely a postponement.

My friend, A, drove me to Group Health, and my friend, D, joined us about a half hour later in the infustion ward. And they both stayed with me the entire time, ~ 6 hours, and kept me wonderfully entertained. My daughter showed up after she had completed her all-night rotation at UW hospital. She was present for the visit by the oncologist, then left to attend a meeting outside the hospital, but later came over for dinner, which was cheerfully and graciously provided by L, an attorney in my office.

I am deeply tired, but also don't want to sleep because it feels really good to be done with a procedure I've been dreading for quite a while. It has been a very intense, but quiet day and I am glad to have it behind me. But it is just a start.

Prelude

Well it's the night before chemo is to start--at about 9 or 9:30 tomorrow morning and run for 6-8 hours--chemo infusions will take about 3 and the rest will be filled with IV fluids to protect the kidneys, as they are at risk of damage from the cisplatin. The other common side effects include:

* hair loss
* feeling tired or weak
* nausea and vomiting (this is the big one)
* hearing damage in the higher ranges

Less common side effects include:

* low blood cell counts starting 2-4 weeks after your infusion (the nurse navigator said it would be more like a downward spiral for ten days but more on that later)
* numbness, tingling, and reduced feeling in fingers and toes
* sweating, difficulty breathing and rapid heartbeat (which are very rare)

The other chemotherapeutic agent, pemetrexed, also shares some of these side effects but also can cause:

* red or painful rash on the face and chest
* sores in the mouth, throat or lip
* chest pain

That's quite a concantenation of side effects, and the cure is not guaranteed, in fact it's less than 50%. Nothing like bringing out the risk taker in me!

According to Ms. F, my nurse navigator at Group Health, who met with me today after

a) my scheduled appointment with the Speech Language Pathologist for my swallowing and speech difficulties (where I learned a lot), and

b) an unscheduled visit to xray for a chest exam and quick meet with my oncologist (because I had difficulty breathing while sleeping Monday night--chest xray showed no pneumonia and oxygenation of the blood continues to be good);

the path that my treatment will take is that once I have the chemo, my blood counts (white cells, red cells and platelets) will fall for ten days after the chemo. For the first few days, I may not notice this because I will be taking the dexamethasone for 2 days following. But eventually, I will hit bottom 10 days from the chemo, then the blood levels will begin climbing back up for the next 10 days, reaching normal levels. A blood test will be done the day before the next chemotherapy treatment to confirm this, then chemo will be administered a second, and then a third time after, again a 20 day wait. My nurse navigator did not pull any punches: she expects this to be a brutal treatment regimen. And I have to learn to say "No" to people, to put myself first in this and not to try to take care of others. I have a bottle of hand wipe by the front door for all visitors to use upon entering and one in the kitchen and my car and purse. I am hoping that no one who has as much as a sniffle will come by because they can't visit during this time.

My nurse navigator also said to be careful about flowers. They cause more problems when I am immuno-compromised than they are worth. And gardeining, a real love but for which I have small talent, is out for the most part--can't get dirt under my fingernails unless I double glove and take it very easy. So funny cards and emails are the best therapy for me, right now. Humor can heal, I've believed for a long time.

The other news from the transvaginal ultrasound was disquieting but not to focus on right now. I have two, not one, ovarian cysts. The first cyst is on the right ovary and is a .9cm cyst and then there is a 9.1 cm cyst with "minimal debris." There is also a 1.4 anterior body fibroid. My friend, L, the gyn surgeon wrote to me tonight that they should be removed after the chemotherapy treatment is ended. Because neither the blood test nor the PET scan showed that they were cancerous, we will just assume they aren't for now. Fine. As my friend, D, who very kindly chauffeured me to all my appointments today, and asked very good questions, when she was not out in the waiting room having telephone scheduling conferences with judges and the other side said: "You get to be a professional patient, now!" I will give them a run for their money, as always.

On to the meeting with the speech therapist, which was actually the most interesting part of my day because I learned so much. Hence the picture at the beginning of this post. And I hope I am remembering all of this correctly, courtesy of Ms. K.

Our larnyx is a tube located in the front of our neck, while the esophagus is located in the back of our neck. When not in operation, our esophagus is closed up quite tightly. It's only when we swallow that it opens up to take food. But these two different tubes, one leading to the lungs, the other the stomach, have unique arrangement in humans, the only arrangement that is seen in mammals where the tubes cross, which can lead to problems, like those that I have.

When you chew food and.swallow it, your epiglottis serves as the first lid, closing off the larnyx so the food is not aspirated, or swallowed into the lungs. The vocal cords serve as the second barrier to this. Think of the vocal cords as a "V" in shape, with the narrow part of the "V" in the front part of your neck, and the open part of the "V" in the back, next to the esophagus. When the vocal cords can't close, like mine, there is an opening in the back where the "V" is open, and sometimes food and water can be aspirated when the epiglottis, the first door, somehow fails to do close and thus, do its job.

So I have to take precautions. I cannot eat things like steak and pork chops anymore or sharp foods like (damn) chips and nuts and popcorn and uncooked vegetables. Etc. etc. etc. But I can soak croutons in soup, and perhaps even chips in dip might make it. Yay!! But no cookies or cake. Although cheesecake is still good. Phew. And I have to remember to turn my head when I swallow to help artificially close off entry to the larynx from the mouth. Because breathing is the most important function that the body does, that comes first. And, given our human physiology, sometimes that can cause problems. End of lesson for tonight.

Just one personal observation here. When I was very, very young my family took a trip to Coldwater Lake in Michigan and stayed with the Reeves family who had a cottage there. I remember being on the wooden float out in a deeper part of the lake, having been helped there by my father. It was wonderful to be with my dad, who as a pediatrician in a small town, I did not see very much. He wanted to teach me to dive from the wooden float. And I froze up. Perhaps it was fear of failure in front of someone I idolized, but I was also afraid of not diving and instead smacking into the water and the pain it would cause me. What I remember is having an total meltdown tantrum on the float in front my father and the other family as I absolutely REFUSED to even attempt to dive in the water. Fear of the unknown and fear of pain has been, at times, almost paralyzing to me. It's the dread the freezes me up. I hope I can overcome that dread tomorrow and acquit myself with integrity. It is one of the guiding principles of Reiki as told to me by my friend S, who gave me a third Reiki treatment this evening in preparation for the morning. A profound and moving session.

I owe many thanks to many people, from my online women attorney friends; to my friends at daily kos who commissioned a healing quilt for me; to my friends at work who are bringing me dinners; to my friends at church who will be doing dog walking and other chores for me; as needed, in the near future, to S, my Reiki practitioner and friend; to my friends A and D who have been my eager taxi drivers and participants in my meetings; to my mom, my sister B, and my daughter, S, who have been there every step of the way; to my friends and ob/gyns Drs. D and M who have shared meals, and their fonts of caring and perceptive advice with me; to my college friends who have been there for me in so many ways, particularly J and F who I have called on for their medical expertise and they have responded unstintingly; to my childhood friend, J, who is now a dentist in Cleveland; to T in Honolulu; and to all who have provided blankets, knit hats and shawls, and sent presents, cards or emails, or offered up prayers. If I am not throwing a tantrum tomorrow or breaking down, it will be in no small part due to all of your kindnesses along this very long way.

Thank you, all of you.

More adventures with Sound

Tonight is potpurri--make of it what you will.


Sunday I went with a group of friends from church to see Joseph and the Amazing Technicolor Dreamcoat at the Fifth Avenue Theatre in downtown Seattle. There's a week left in its run, and I can recommend it highly for the entertainment value. My church choir had done our own very unique version of this Andrew Lloyd Webber musical two springs ago and we had purchased tickets this past summer to see how the pros do it. The Fifth Avenue version stars some fellow who was a finalist on American Idol and wears his hair a la Orlando Bloom in Lord of the Rings but that isn't necessarily a mark against him. Final verdict from all the attendees was two thumbs up, although we thought our own Potiphar and Pharoah/Elvis were just as good as the singers on stage.

This is the only youtube I can find of the current run, but it's indicative of the energy the entire cast brings to the production. Joseph at the Fifth Avenue Theatre

Then today it was up early and off to Group Health in Bellevue for a transvaginal ultrasound (another adventure with sound just to state the obvious). I'm going to give a "Guy warning" here so that if you are a guy and find talking or reading about this stuff distasteful, stop right here and just read the one word Executive Summary:

ICK!!!

The technician setting up the appointment had advised me to drink 32 ounces of water an hour prior to the ultrasound so my bladder would be full. I did as instructed and arrived at 8:20 for an 8:30 appointment, shall we say, primed and ready to go [this despite a pouring rain and bumper to bumper commute across the 520 bridge]. 8:30 arrived, and no go. Five minutes passed, ten minutes passed. I was getting very, very explosive. Finally at 8:45, I uncrossed my legs, stood mainly erect and made it to the check-in desk, where I enquired as to the delay. Now my voice is a chirrup these days, therefore, I lack the tone necessary to convey a real sense of urgency, so my words have to do it for me. What I recall saying is something to the effect that if they were not quick about getting me into the ultrasound room stat, all that careful preparation was about to go to waste. Immediately after I returned and gingerly lowered my body into my seat, the technician was out calling my name.

The first part of the procedure was a typical ultrasound, similar to the ones I had during my last two pregnancies, where ointment was spread over my abdomen and a hand held device was rubbed on top of my skin which, using sound waves, created a grainy, black and white reflection of the organs below my stomach. Once that was completed, I was allowed to dress and go to the bathroom (whew!) and then return for the transvaginal ultrasound. Apparently this is a technique used for most pregnancies these days and it involved an extremely long but thankfully skinny wand shaped instrument with an ultrasound camera on its tip, that you insert into yourself, and then the technician moves ii up, down and all around inside. It was quite uncomfortable during portions of this procedure and induced nausea at one point, albeit not severely. Here is what the result of one looks like:



Once this procedure was complete, I was free to go. My friend, D, drove me home after a great breakfast at her favorite greasy spoon. Nausea gone--Yum!

One last word of caution, do not order prescription refills from Group Health's automatic refill service unless you have more than a week of your original prescription left. It took a great deal of effort to obtain a 'filler' prescription late this afternoon from Group Health at their Northgate pharmacy, which will cover me while I wait for the main prescription to be delivered by 'snail' mail. Luckily a friend was able to do the phone work and help out in talking to the pharmacist-- because my voice is so far gone at this point, I even have difficulty ordering from a McDonald's drive in. I continue to be amazed at how very much I relied on my voice to simply transact the mundane business of life, until this happened. These days, I am a stick at conversation. But on the other hand, it has kept me from telling certain people exactly what I think of them, when pushed too far. So perhaps, it is a good thing as well.

And I still can write.

The Big Squeeze

Today was mammogram day. I had scheduled it in back August before the cancer diagnosis, but it was initially set for early October. However, the flu season hit the Group Health Capitol Hill mammography clinic then, and they reset it to today, Saturday.

I showed up a half hour early, was seen quickly and was able to get home ahead of the Husky-Duck football game. However, I can tell you that having it done so close in both time and proximity to the installation of the port in my chest made it even more exquisitely painful than normal. The woman who was my mammography technician, admitted that it was harder to properly position and xray small breasted women than those with larger ones. And for those of you who are unfamiliar with how to describe what a mammogram is like, I offer you this unsourced bit of humor that has, at its core, a kernel of truth:

Many women are afraid of their first mammogram, but there is no need to worry. By taking a few minutes each day for a week preceding the exam and doing the following exercises, you will be totally prepared for the test! Best of all, these simple exercises can be done at home.

Exercise 1
Open your refrigerator door and insert one breast in the door. Have one of your strongest friends slam the door shut and lean on it for good measure. Hold that position for 5 seconds. Repeat with other breast.

Exercise 2
Visit your garage at 3am when the temperature of the cement floor is just perfect. Remove your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back up the car until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.

Exercise 3
Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Ask the stranger to smash the bookends together as hard as she can. Set an appointment with the stranger to meet next year and do it again.

You are now properly prepared!

And, of course, click on the title for more humor.....

Intermezzo

I received a call from my treating oncologist late yesterday afternoon. He had returned from Colorado, and was slightly under the weather as a result of receiving the H1N1 mist vaccine on Wednesday. But our conversation was energetic and it was agreed that:

1) I start chemotherapy on October 29, 2009, using the formula prescribed by Dr. M at SCCA.

2) I will continue to take the folic acid supplements throughout the chemotherapy regime. The high dose steroids to be taken the day before and two days post chemotherapy should not pose a long term problem, given the restricted dosage, but I might be a bit energetic and/or grouchy on the days that I am taking them. I forgot to ask about water gain as well. Maybe I can increase my bench presses too.

3) The blood test for cancer markers for ovarian cancer and lung cancer both came back negative. "Well I guess I don't have lung cancer," I joked with Dr. N. Right.

4) I should try for the mammogram this Saturday even though the port insert continues to be a bit tender. I have a nice green/purple bruise going south from the insert as well.

There were other points of discussion, but I can't remember them right now. Expect editing of this entry as my memory returns.


At the last moment, yesterday a dear friend called and said that they had room that evening at the commons table of Art of the Table, in the Wallingford neighborhood of Seattle. It is a prix fixe menu modelled on similar restaurants in the Bayonne region of France, where the chef trained. Click on this post's title to see the restaurant's home page.

It was a fabulous dinner, made from ingredients the chef had gathered from local farmers and artisans. Here is the menu:

Fall Into Autumn
October 22nd, 23rd & 24th


first course:
Roasted Garlic Soup,
Melted Leek Crostini



second course:
Roasted Chanterelle,
Butternut Squash Gnocchi,
Housemade Bacon



third course:
Braised Skagit River Ranch
Oxtail Cabbage Wrap,
Autumn Veggies,
Parsnip Puree, Crispy Shallots



last course:
Hazelnut Tart, Apple Compote,
House Made Laurel Ice Cream




Not included in the formal menu, was an appetizer composed of celeriac root with an aioli whose ingredients other than garlic, escape me (that pesky memory again), and a second "bouche amusante" which cleared the palate prior to the main, or third, course, that was a pear apple sorbet topped with currants and pieces of pickled lemon rind. The four of us sat at the commons table, and while not engaged in conversation among ourselves, got to meet a very nice young couple across from us. An evening reminiscent of a number of fine dinners I have enjoyed in France in times past. Julia Child would not have felt out of place there. Bon appetit!

Interlude

Now comes the waiting part. Chemotherapy will begin at 8:30 October 29th. In the meantime, I received a Vitamin B-12 shot yesterday and a bottle of folic acid pills that I am to take once a day for the week preceding the chemo. Then a twice daily dose of high level steroids the day before chemo and for two days afterwards. The first two steps are done to cushion the toxic damage on my body by the chemo, and the steroids are to make my body accept the chemo more readily so it can wreak its havoc on my 3 tumors. The pharmacist filling the prescriptions at Group Health said that the steroids will make me feel good and full of energy, and that when I stop taking them I will crash. So expect that to happen on Sunday November 1.

I also had the bloodwork done to check for the ovarian and lung cancer markers amd make sure my bood levels are high enough for the chemo. I have a vaginal ultrasound scheduled for next Monday at Bellevue (Group Health Central had no openings until Nov. 11!)and a mammogram this Saturday, that was postponed from earlier this month, when everyone in mammography was out sick with the flu. Not sure the port installation will permit the mammogram.


Waiting is difficult. Today I found a YouTube recording of Ensemble Alcatraz, a group based in San Francisco that performs vocal and instrumental music from the Middle Ages. I first heard them on a classical radio station 23 years ago when I was home on maternity leave with my oldest son. It made me sit up and call the station asking for the artist. I have been an avid fan ever since then. The song is embedded in the title--click on it to listen. Here is another, similar music track.



Enjoy

Late update: the blood test for the Oca 125 marker for ovarian cancer came back in the normal range. Good news!