Friday, January 30, 2009
Out of respect to Bethany's point-of-view (in comments), I have edited this post to remove a word that some found offensive in the context that I used it.
Middle schoolers have more words to describe things they don't like than the Eskimo-Aleut language has for snow. I have had a hard time catching on to this. At first, I just noticed the invoking of the invective "stupid" a lot more than I ever did when Erin went to elementary school. My addled brain heard "stupid" from the back seat or at the dinner table so often, I made a mental note to find a time to encourage her to expand her vocabulary.
(ASIDE: This tactic and a bar of ivory worked wonders with the primo when he started experimenting with cursing. The soap was the stick and the promise of teaching him much more creative and interesting ways to insult people and express himself was the carrot.)
Another tack I took was using "stupid" myself so she could see what it sounded like. For instance, if I pulled up to the curb to let Erin out for school when I intended to park so I could go in and take care of some business, I would say "That was stupid." The look in Erin's eyes that I'd catch in the rearview mirror told me loud and clear, I didn't "get it."
Obviously, I missed the boat completely on "stupid." As I paid attention, I noticed that "not cool" came up as often as "stupid," with an occasional "r_______" stuck in for variety. I finally got Erin to explain it to me, WITH EXAMPLES.
Clearly, a lot of negative things happen on a day-in, day-out basis to people, and it requires a rich and varied language to describe what's happening so that everyone can understand your level of misery.
If someone (usually a friend) takes your pencil without asking for it, and you notice, you say, "not cool." I think this applies to a lot of situations that your friends do things that you wouldn't tolerate from acquaintances or random classmates. Since they are your friends and you want them to know you didn't like or appreciate what they did, you use the relatively benign phrase "not cool."
"Stupid" also covers a multitude of situations, but all of them are "more" bad than things that are "not cool." Having homework in more than three classes in one night is "stupid." Leaving your mandatory ID lanyard in the car in the morning is "stupid," but not as "stupid" as getting caught in the hall without it. Your friends can do "stupid" things (but not usually to you), like the kid who video taped himself (AT SCHOOL, WITH HIS SCHOOL-ISSUED LAPTOP) lighting the aerosol from a deoderant can on fire BEHIND a teacher's back, THEN UPLOADED IT TO YOUTUBE (don't go searching for this. . .it's already come and gone). This is the first example Erin gave me that I actually agreed that "stupid" was the appropriate descriptive word, and thought perhaps it bordered on the next level up.
"R_______" is for things that go beyond the pale. For example, it is "r_______" when you get the same lecture eight periods in a row about remembering the rules for the appropriate use of school-issued laptops.
I happen to think that cancer is not cool, stupid, and r_______, all at the same time. I'm sure I will add some other descriptors soon. After I master the first level and can use these words correctly, I'll get to move on to more specialized words with more subtle nuances.
Erin has had a mostly good week, with some complaints of tiredness, some off and on stomach issues, variable use of tylenol, and an increasing number of meds to keep track of (the main side effect for zometa is a couple of days of flu-like symptoms). I wish she felt better, but I'm glad she doesn't feel worse. She has plans to make lanyards and watch movies with Leslie Borski after school today and see Hello Dolly tomorrow night with her friend Toni. Next week looks busy already, and we haven't even gotten there. She has an eye doctor appointment on Monday and clinic in Houston on Tuesday afternoon. More importantly she has student council after school on Monday and Wednesday (much to do before the Valentine's Dance) and UIL on Tuesday and Thursday. And of course, the highlight of the week, fencing starts next Thursday.
I bought a new scanner yesterday. What do you think?
Wednesday, January 28, 2009
Yesterday went fine logistically. My mom traveled with us so we could use the HOV lane, but having an extra person in the car does nothing to ease the delays caused by road construction and the resulting traffic congestion on the major streets right by the medical center. Davis popped over for a minute (literally), and we saw some of our friends (Mayada/Michael and Athena/Alex. . .did I miss out on an alliterative opportunity when I failed to name my children with something starting with "V," Violet, Vincent, Vera Cruz?) in the waiting area, so the wait time passed fairly quickly. And of course, Erin had her Macbook. She has recently discovered the fun you can have with YouTube and searches like "Funny Cats" or "Crazy Dogs."
On the whole, we didn't have any major hang ups at clinic. Dr. Russell thought Erin looked pretty good, and all her counts were lovely except for the GGT (one measure of liver function).
HGB 10.4 ( a bit low, but fine for Erin)
WBC 8600 (smack dab in the middle of normal)
ANC 7500 (on the high end of normal)
PLT 289,000 (normal)
Last week Erin had elevated AST, ALT and GGT (all part of the liver panel). This week AST had returned to normal, ALT had dropped by half (though still outside high normal), but GGT had continued to climb. When I googled elevated GGT, I discovered that higher numbers imply (unspecified) insult to the liver. I hope that tylenol and stomach upset rather than neuroblastoma has been insulting her liver this week.
The rest of our TCH morning wobbled along. It took a while to find a waitress to take our zometa order, but once served, Erin downed the IV in about twenty minutes (including flush). We made it back to Bryan for the last three periods of the school day. Our heroic effort to return in time for UIL practice was for naught, as cold weather cancelled most afterschool acivities, including UIL. It really was just as well, since by late afternoon the expected side effects from the zometa infusion, plus the early morning dash to Houston, had left Erin feeling exhausted and achy.
That's it for now. I need to run out and find Viactiv chews for Erin to eat for the next week to supplement the calcium that zometa will leach from her. I wanted to scan Erin's school pic, which turned out really well, but I keep getting a message that I can't scan until I unlock my scanner. As if I am so cruel as to keep my scanner jailed.
Monday, January 26, 2009
I received the following e-mail in regard to Erin's UIL competition preparation:
For once I have something concrete to offer, since I was in number sense for three years in high school. To multiply by 16 2/3, divide by 6 and add two zeroes. There were many other such tricks, but it has been almost fifty years and my head hurts even thinking about math. Never mind. Davis will be more help.
If the UIL contest you cannot recall involves firing artillery, I can probably remember enough of my army training as a forward observer to be of some help (although be warned that my National Guard unit once destroyed part of a state park in Louisiana during summer camp training at Fort Polk).
This brought to mind the many talents and experiences Erin fans may have up their sleeves. So, if you have an offer of help, say for a UIL competition involving rabid skunks or perhaps finding your way home on a dark moonless night when you accidentally left your shoes in someone's yard when you were wrapping their house with toilet paper, please volunteer by leaving your qualifications in a comment below.
Erin has recovered her appetite and thrown off the stomach bug. She, my mom, and I are going to Houston tomorrow morning (pulling out at 5:30) for what we hope will be a routine and relatively quick office visit and zometa infusion. I look forward to hear what you are qualified to volunteer with in Erin's UIL career when I return. Pat, I have read your spotted work history (scroll down) and can certify you in a large number of instructional roles: including envelop stuffing and illegal i.d. user.
Sunday, January 25, 2009
Erin finished out the week strong. The Life Skills class at her school honored her by making a substantial donation to the Children's Neuroblastoma Cancer Foundation from their Christmas craft sales. This is such a two-way blessing. The students in Life Skills have disabilities (sometimes severe), and their classes help them learn how to become independent young adults. They make a variety of crafts that they sell to fund school activities. By contributing part of their earnings to the CNCF, they demonstrate to us all that everyone can help someone else. Thanks to all those student and their teachers for putting their money where it will do real good in the world.
After school on Friday, we packed up a van full of middle schoolers and took them over to the Ross's house to help Jackson celebrate his 12th birthday. Erin and the gang played football for almost two hours before coming in for cake and ice cream (who can believe it was 80+ degrees on Friday, when it never got about 47 yesterday?). Erin even caught a pass from Jackson for a touchdown! Luckily Colton brought his little brother Weston, so that she had size and weight parity with at least one other player on the field. Otherwise, it sort of looked like Teddy playing football with a team of Willies.
Saturday turned out a little less fun and upbeat. Erin had a slow start to the day and later in the afternoon I discovered why. I thought she had just overdone it on Friday or that her lung was flaring up. It turned out that the Jane Long stomach virus eventually caught up with her (sorry D'Anna, had I known, I would never have had Noah over to share the germs all day), but not before we spread her cheer around pretty effectively. Earlier in the day we went out to support Jackson's basketball team and then went to lunch with his fan club. Noah came back to the house for legos and to keep Erin company. We even contemplated a movie. She never ran a fever, so that was good, but she didn't feel all that well most of the day. I think she seems better today. Anyway, I owe all of our friends a preemptive apology for exposing their kids to the urps and whatever your euphemism is for the other stomach virus outlet.
For those of you following the treatment side of this story. Erin successfully started oral etoposide on Thursday and we added a daily therapeutic dose of celebrex on Friday. Next Tuesday we'll zip in to Houston for an IV dose of zometa to protect her bones and make them less hospitable to tumor that might try to move into the bones. We took the early appointment so we could make it back for afternoon classes and after school UIL practice (Erin has signed up for seven events: general math, number sense, calculator, oral reading, dictionary skills, maps, charts, and graphs, and something else that I can't remember. I don't know if she will qualify in all of them, but she wanted to try.).
Thursday, January 22, 2009
I feel like Loki, the Norse God of Mischief, has trained his gaze on the Buengers. While enjoying the break from treatment and waiting to meet eligibility standards for a new clinical trial, Erin has felt well and enjoyed all of her various activities. Unfortunately, she developed a little fluid on her lung over the weekend. For those of you who googled or goodsearched pleural effusion after reading Tuesday's entry, don't panic. Erin does not have pneumonia. She does have some pain and is taking Tylenol more often than an eleven-year old should. Her breath is a little more shallow on the right side, but the amount of accumulated fluid is quite small. We did not have to stay in Houston overnight. She returned to school Wednesday morning (a tad late, since I let her sleep in after our thirteen hour jaunt to Houston and back). She made piano lessons after school and her fused-glass jewelry workshop last night.
Where does that trickster Loki come in? The CT scan showed tumor growth (I'm surprise at how much, but not that she had progression, which I consider pretty much a no-brainer, in the absence of treatment). In fact, tumor activity probably caused the fluid to back up into the lower lobe of her lung. We needed evidence of tumor growth to qualify for a trial. . .HOWEVER. . .having a pleural effusion really limits what drugs you can give. It keeps her from qualifying for any of the trials we were waiting for. It also eliminates a lot of the drugs we can do off-study, because of the danger of administering the required extra fluids. We are starting oral etoposide (which is a once-a-day, at-home gelcap) today.
What did the Buengers do in the face of this cruel joke? Enrolled Erin in six sessions of Fencing for Kids, starting week after next! Just a warning to the beast neuroblastoma, Erin will soon be armed and dangerous.
Erin has agitated us about taking fencing for a number of months. It's part of her personal plan: get a little more active, a little stronger, a little more endurance. That, she hopes, will pave the way to getting back to more athletic pursuits.
Tuesday, January 20, 2009
Monday, January 19, 2009
Our local newspaper has fallen on harder times. Some people complained so loudly when the publisher recently ditched the daily television program guide as a cost savings measure that he reversed the decision a few days later. Whew! We can still plan what we want to see on tv, but the articles have shrunk to nothing--either canned from the wire service or like Cliff notes of real happenings. The actual dimensions of the paper have shrunk, too, and there is a lot more white space (this happens as a natural consequence when you write down fewer words). All these changes made me sad. I like to read my local morning paper when I drink my coffee. These days, I have finished the whole paper before my coffee cools enough for the first sip.
Sad, but not enough to send me on a tear. That happened this morning. Years ago, I developed a newspaper-dependent, MLK-Day habit. For as long as I can remember, our local paper has printed the full-text of Martin Luther King, Jr.'s "I Have A Dream" speach, on the editorial page on MLK Day. And for equally long, I have insisted on reading it, in its entirety, outloud to Walter, Davis, and Erin over breakfast. I always cry towards the end, but keep on reading, even if I have to pause a bit to let my throat unconstrict and help my voice from cracking too much. It wasn't there today, and I have been grumpy about it ever since.
I didn't want to leave the breakfast table, fire up the computer, and find it on the internet. I wanted Erin to know that the ideas and ideals in the speech were important enough to appear in the local paper. . .important enough for her to remember them, yet again. So I will have to do it myself. . .
I am happy to join with you today in what will go down in history as the greatest demonstration for freedom in the history of our nation.
Five score years ago, a great American, in whose symbolic shadow we stand today, signed the Emancipation Proclamation. This momentous decree came as a great beacon light of hope to millions of Negro slaves who had been seared in the flames of withering injustice. It came as a joyous daybreak to end the long night of their captivity.
But one hundred years later, the Negro still is not free. One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languished in the corners of American society and finds himself an exile in his own land. And so we've come here today to dramatize a shameful condition.
In a sense we've come to our nation's capital to cash a check. When the architects of our republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir. This note was a promise that all men, yes, black men as well as white men, would be guaranteed the "unalienable Rights" of "Life, Liberty and the pursuit of Happiness." It is obvious today that America has defaulted on this promissory note, insofar as her citizens of color are concerned. Instead of honoring this sacred obligation, America has given the Negro people a bad check, a check which has come back marked "insufficient funds."
But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. And so, we've come to cash this check, a check that will give us upon demand the riches of freedom and the security of justice.
We have also come to this hallowed spot to remind America of the fierce urgency of Now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice. Now is the time to lift our nation from the quicksands of racial injustice to the solid rock of brotherhood. Now is the time to make justice a reality for all of God's children.
It would be fatal for the nation to overlook the urgency of the moment. This sweltering summer of the Negro's legitimate discontent will not pass until there is an invigorating autumn of freedom and equality. Nineteen sixty-three is not an end, but a beginning. And those who hope that the Negro needed to blow off steam and will now be content will have a rude awakening if the nation returns to business as usual. And there will be neither rest nor tranquility in America until the Negro is granted his citizenship rights. The whirlwinds of revolt will continue to shake the foundations of our nation until the bright day of justice emerges.
But there is something that I must say to my people, who stand on the warm threshold which leads into the palace of justice: In the process of gaining our rightful place, we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. We must forever conduct our struggle on the high plane of dignity and discipline. We must not allow our creative protest to degenerate into physical violence. Again and again, we must rise to the majestic heights of meeting physical force with soul force.
The marvelous new militancy which has engulfed the Negro community must not lead us to a distrust of all white people, for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny. And they have come to realize that their freedom is inextricably bound to our freedom.
We cannot walk alone.
And as we walk, we must make the pledge that we shall always march ahead.
We cannot turn back.
There are those who are asking the devotees of civil rights, "When will you be satisfied?" We can never be satisfied as long as the Negro is the victim of the unspeakable horrors of police brutality. We can never be satisfied as long as our bodies, heavy with the fatigue of travel, cannot gain lodging in the motels of the highways and the hotels of the cities. We cannot be satisfied as long as the negro's basic mobility is from a smaller ghetto to a larger one. We can never be satisfied as long as our children are stripped of their self-hood and robbed of their dignity by signs stating: "For Whites Only." We cannot be satisfied as long as a Negro in Mississippi cannot vote and a Negro in New York believes he has nothing for which to vote. No, no, we are not satisfied, and we will not be satisfied until "justice rolls down like waters, and righteousness like a mighty stream."¹I am not unmindful that some of you have come here out of great trials and tribulations. Some of you have come fresh from narrow jail cells. And some of you have come from areas where your quest -- quest for freedom left you battered by the storms of persecution and staggered by the winds of police brutality. You have been the veterans of creative suffering. Continue to work with the faith that unearned suffering is redemptive. Go back to Mississippi, go back to Alabama, go back to South Carolina, go back to Georgia, go back to Louisiana, go back to the slums and ghettos of our northern cities, knowing that somehow this situation can and will be changed.
Let us not wallow in the valley of despair, I say to you today, my friends.
And so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.
I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident, that all men are created equal."
I have a dream that one day on the red hills of Georgia, the sons of former slaves and the sons of former slave owners will be able to sit down together at the table of brotherhood.
I have a dream that one day even the state of Mississippi, a state sweltering with the heat of injustice, sweltering with the heat of oppression, will be transformed into an oasis of freedom and justice.
I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
I have a dream today!
I have a dream that one day, down in Alabama, with its vicious racists, with its governor having his lips dripping with the words of "interposition" and "nullification" -- one day right there in Alabama little black boys and black girls will be able to join hands with little white boys and white girls as sisters and brothers.
I have a dream today!
I have a dream that one day every valley shall be exalted, and every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight; "and the glory of the Lord shall be revealed and all flesh shall see it together."2
This is our hope, and this is the faith that I go back to the South with.
With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.
And this will be the day -- this will be the day when all of God's children will be able to sing with new meaning:
My country 'tis of thee, sweet land of liberty, of thee I sing.
Land where my fathers died, land of the Pilgrim's pride,
From every mountainside, let freedom ring!
And if America is to be a great nation, this must become true.And so let freedom ring from the prodigious hilltops of New Hampshire.
Let freedom ring from the mighty mountains of New York.
Let freedom ring from the heightening Alleghenies of Pennsylvania.
Let freedom ring from the snow-capped Rockies of Colorado.
Let freedom ring from the curvaceous slopes of California.
But not only that:
Let freedom ring from Stone Mountain of Georgia.
Let freedom ring from Lookout Mountain of Tennessee.
Let freedom ring from every hill and molehill of Mississippi.
From every mountainside, let freedom ring.
And when this happens, when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:
Free at last! Free at last!
Thank God Almighty, we are free at last!3
Sorry to take you down that rant path. . .Back to regular programming.
Erin is still waiting on a treatment plan. I was A-Okay with this until she woke up Saturday morning with some aches and pains. Maybe normal for a middle schooler. Maybe not.
I guess there comes a time on every vacation, when you start getting tired of the scenery and start thinking about getting on home. I think that's where we are now. I have emailed Dr. Russell. I feel strongly that we will have Erin back on treatment by the end of the week.
Today is Walter's birthday. Erin made him a stress stone in the fused-glass workshop last Wednesday. She told him to carry it to work in his pocket and rub it when he felt stressed out, since "you know, dad, how many things at work cause stress."
She has also worked diligently on another project. Lara and Elle Weberling (on Han's team) started making beaded lanyards that hold IDs (like nurses and teachers have to wear) several months ago to raise money for Lunch for Life and the CNCF. Erin got in the act and started making them and selling them at her school. The teachers at Jane Long have been extremely supportive (so much so, that Erin couldn't keep up with orders). Yesterday she enlisted her friends in the Older Elementary Fellowship at church to pitch in, and they spent three hours designing and building lanyards.
I have another Willie story, "Willie Meets the Deputy Sheriff," that will have to wait for another day (the newspaper may have cut back on word count, but I certainly haven't). Instead, I will leave you with a photo of Teddy that Erin took, entitled, "Nothing Cuter Than Me."
Wednesday, January 14, 2009
Taking a break from chemo is just like slumming the French Riviera, hitting the slopes in Vail, then flying up to Nova Scotia to see the eclipse. Well, not so much. But, it beats five full days in clinic, transfusions, neutropenia, and feeling punk. In addition, we have
- avoided official trips to Houston. For honesty sake I will admit that I drove a load of much needed stuff down to Davis last Saturday, but a unofficial Houston trips seemed much less burdensome than our usual kind. Erin, by the way, refused to tag along, insisting that I drop add a little time and distance to my roundtrip by dropping her off at her Aunt Jan's, while I slogged on alone;
- avoided official and unofficial trips to clinics or hospitals of any kind;
- made it to school or work ON TIME every day; and
- celebrated Erin's first "no-absences-for-an-entire-week" of the school year last Friday.
I understand she stayed up at Sam's sleepover until 4:47 Saturday morning and got up before the other slumberers a few hours later (I think 9:30ish). She didn't go back to bed AND she wasn't cross.
I did pick her up early from school yesterday, on principle rather than on reason. The school has benchmark testing as a dress rehearsal to TAKS later this spring. They are very strict about testing conditions, and no one is allowed to leave their classroom (or really even their seat) or to speak until every one of the more than 800 students have finished the exam. Erin finished about 10:30, and I didn't have the heart to leave her sitting there until a quarter to four. I let her cool her jets until after lunch (they deliver lunch to the rooms so no one has to move a muscle), then picked her up. We finalized our purchases for Walter's upcoming birthday, and I let her make shortbread cookies (from scratch) to take to school this morning (another violation of district policy, I'm sorry to say. . .no non-nutritious snacks and nothing baked in home kitchens).
Even though the testing scenario is the same today as yesterday, Erin stayed the full measure so she could go to her student council meeting after school. I think we'll go to the fused glass jewelry wrokshop at the church tonight to round out our day.
What does the rest of the week hold? Piano after school tomorrow and a three-day weekend on the horizon. We turned down tickets to the inauguration because I thought we would just be hitting our stride on the post-chemo ditch next Tuesday. Do I have regrets? Not really. We'll get to DC sooner or later this spring. For now I am enjoying that time called "normal" that until recently I only experienced as a setting on my washer.
If you dropped by to hear all about our next new treatment plan, sorry to disappoint. You know as much as I do (unless you are Dr. Russell, lurking out there in the blogosphere) which is nothing. No timeline, no decision trees, no pre-set triggers. You know I'll post when we have a plan or even the semblance of a plan.
Did I mention that you didn't need to worry about me figuring out what to do last Friday? Let's just say I figured it out. I will share that I had leftover beef stroganoff for breakfast. . .something I would never get away with the fam at home.
Sunday, January 11, 2009
One has to wonder if the Tennessee Titans would have had more luck against the Ravens yesterday if they had played Vince Young. Erin thinks so.
Thanks for these photos, Debbie! Jeff Fisher will see the light, and next year there will be no stopping the Titans.
Friday, January 9, 2009
If George Eliot captured the truth when she wrote that "our good depends on the quality and breadth of our emotions," then the Buengers must be really wallowing in our good these days, because we certainly have stretched out emotions.
I drove myself crazy wondering and waiting for news of Erin's scans on Tuesday mornings. Believe me, I was worthless, even at the simple task I had set for myself (updating my Outlook contact information from Christmas card envelops). Then the call came and I found out Erin was ripe to enroll in a new clinical trial based on improved scans results. We all breathed a large sigh of relief: we had stemmed the tide on the beast, and it had not "taken off" in an uncontrolled frenzy. The mention of change brought a riff of thrill, but also palpitations of fear.
An extended phone conversation with Dr. Russell on Wednesday laid out more trial options that I imagined possible, given I thought we had scraped the bottom of the barrel in the fall: CEP-701, ABT-751, AURORA, and Cediranib (do you think that cancer drug makers are channeling either Star Wars droid designations or Walt Disney princesses when choosing drug names?). And, of course, there was the stalwart standby, topotecan/cyclophosphamide. Wow! Choices, and all oral. Manageable side effects. No transfusions. Limited clinic time. Maybe even lose the PICC line in time for warm-weather swimming! We just had to choose. And Dr. Russell even eased our burden there. She rank ordered her preferences.
I rang off with Dr. Russell and waited a couple of hours for Walter to get out of a meeting. We agreed that her first choice (CEP-701) seemed like the obvious first choice. Just as I picked up the phone to call and set things in motion, my text message signal beeped with the news that the last slot on the CEP trial had gone to someone else about twelve hours before.
Do you know what it's like to have the rug ripped from under your first choice for something (even if it had only been your first choice for moments, and realistically you can't discern the difference between your first and second choices)? Aack.
Still we had choices, just not our first choice. We opted for the second choice (ABT-751), and instructed Dr. Russell to "Make it so." I assumed we would need a bone marrow aspiration and biopsy and probably some other tests before we got started, and I was hoping for a Monday kick-off.
Thursday morning no one called to schedule anything and by noon, I was curious, but not worried.
Then we heard that Erin's holiday from treatment would last longer than expected. All the clinical trial options on the table require further distance from radiation (six weeks, and we had only five) or measurable tumor outside the radiation field. This left us with no trial to enroll in and probably another round of scans before we can start anything, because last week's scans have a limited shelf life and then they expire. Double Aack!
Another knot we face is that if we give any chemo or even chemo lite to tide her over, it just extends out into the future the date when Erin could enroll in a trial (usually at least three weeks past the last dose). In the meantime we just add to her toxicity profile and wear down her body and psyche even more. This is a scary position to be in, because we know what can happen with no treatment. However, Dr. Russell thinks this is a good time for a short break to let Erin recover her bone marrow and blood counts and of course to get to have a normal, non-cancer life.
So we will board the old "tolerance of ambiguity" train and ride for a while. I suspect we will begin something next week or the week after. . .unless follow up scans show no tumor growth. In the meantime, we (The Buengers and Dr. Russell) will check every day for new trials opening and eligibility rules. We will try to notice if Erin's condition starts deteriorating while we simultaneously try to take full advantage of our enforced holiday (can you say birthday party sleepover at Sam's tonight?).
We will ponder whether we should rejoice because the radiation worked or curse because it blocks our move to the next step.
On a sidenote, you may have noticed that I added the time and weather for Canberra, Australia on the sidebar so that I could keep track of all the Tjoelkers during their six month stay down under. I have noticed a few times in the past that I have had visitors to this site from Canberra. If you live there or in the vacinity, could you e-mail me (firstname.lastname@example.org) and let me give you the Tjoelker's contact information? They are very lovely and charming folks with three sons ages 4-12 who would love to meet you or at least get your recommendations for fun things to do in the area.
Tuesday, January 6, 2009
Today is Epiphany in the Christian church, the commemoration of the coming of the Magi (does this translate in your dictionary as astrologer?) as the first manifestation of Christ to the Gentiles. I kept the last remnants of the Christmas decorations up until today to show solidarity to the twelfth day of Christmas, though the shedding tree and most of the holiday tinsel came down a week ago. The word epiphany also connotes discovery or realization often triggered by something simple yet striking.
No epiphany (in the second sense) in the Buenger household today. When Dr. Heidi Russell called today with scan results, I didn't slap myself in the forehead and say, oh now I get it. The results were much like we expected. The areas inside the two radiation fields showed good improvement (although I would have preferred to hear "completely melted away"). The questionable lymph nodes outside the radiation fields were still there, probably about the same, maybe a millimeter or two bigger, but certainly not growing rampantly. The radiologists believe that a couple of very small spots they have watched over the fall are now bright enough to be called boney lesions (hip and head), but I'm skeptical, since we had a negative CT of Erin's head in December with no sign that anything was going on there. So there you have it, as I predicted, somewhat mixed results, though taken together weighing towards good news, rather than stable or bad news. And that's exactly how Erin looks and acts.
Given Erin's current overall health and painfree status (any health problems she has had lately appear treatment related rather than tumor related), it seems like a ripe moment to try something other than the topless cyclone. What? Haven't a clue. Dr. Russell promised to e-mail me some options later today or first thing tomorrow.
So, no "ah ha" moment. No "head slapping, I could have had a V-8" moment. No epiphany on Epiphany. Just another reprieve from irrevocably bad news about Erin's cancer. I've been saying it all along. . .Hope in '09.
Erin got a camera for Christmas, so I will leave you with this self portrait:
Also, her entry into Funniest Animal Videos:
Friday, January 2, 2009
The second of January is a good day to scan. A lot of people who usually crowd the highway on my route in and out of Houston skived off work today, leaving room for me and Erin to swan in and back out with relative ease. By 3:00 we had put in our ten-hour day and made it home to start our weekend.
I didn't have much anxiety on the run up to these scans, and I have tried to analyze why. Most importantly, we haven't given Erin anything for pain since before Thanksgiving, so we do not expect terrible news. I conclude that the radiation knocked back the section pushing on her spine and most likely did the same thing to the piece by her bronchial tube since breathing hasn't developed as a problem. My biggest curiosity is about any tumor outside the radiation fields. Since chemo had not worked wonders throughout the fall, I guess I expect some mixed news.
That may explain why I haven't had big anxiety. When things go well, you get on pins and needles anticipating scans because whether your life is going to be thrown into disarray and madness hangs in the balance. When your life is already in disarray and madness, you don't sweat the small stuff. I can tell without a scan that Erin's tumor has not turned into a train wreck. Even if she has pretty good scans, I don't think much will change about her treatment, at least for now. It's not like we have a whole bowl full of protocols to choose from. So, from looking at her, I can eliminate most of the really bad things, and static scans get our ticket punched again for the topless cyclone (topotecan/cyclophosphamide). What if I'm completely wrong and things have actually resolved significantly? I won't complain about an easier regimen.
For those of you who haven't thrown off scanxiety, even after that explanation, I'm not going to be much help. The technicians may have worked the day after New Year's but the doctors didn't, and Erin's doc never works Mondays. That means I have not a clue when we will get results. Maybe someone will read and report them before Tuesday. Maybe not.
As of now, we will return to clinic for more chemo of some sort or another next Thursday (1/8) unless we hear otherwise. Until then, we are still on holiday from cancer.
Thursday, January 1, 2009
Tamar Geller wrote a book called The Loved Dog. I picked it up a while ago because I couldn't find one called The Mostly Liked, But Sometimes Barely Tolerated Dog. As you know, I had to do something about Willie. He doesn't chew stuff as often or as thoroughly as he used to (at one time I compiled this list of Willie Treats that he helped himself to), and in fact, the only materially important thing he has chewed lately is a newly delivered box of PICC line supplies carelessly left on top of the drop-leaf table by the front door. A whole year has passed since he pulled the ten-pound pork loin roast off the counter while it sat patiently waiting for carving.
The problem isn't his inside behavior, it's his outside behavior. The Tennessee Titans have two runnings backs, Smash (LenDale White) and Dash (Chris Johnson), known for their force (LenDale) and speed (Chris). Willie channels them both every time he goes outside. Plus, his auditory system picks up noises made by bunnies and field mice burrowing and imaginary sources of danger kilometers away, but not anything broadcast on the human voice frequency.
Because we have a neighbor who shoots canine intruders to his property and others living nearby who don't appreciate Willie dashing up and smashing into them, I set out on a course to train him, using Tamar Geller's methods. Ms. Geller, a former Israeli Intelligence officer and wolf pack observer, somehow combined and parlayed those two career experiences into a third career as a life coach (?) for dogs. She highly recommends using a hierarchy of treats (gold, silver, and bronze) to reward and reinforce the behaviors you want your dogs to have. Sounds good, right? So far, I have trained Willie and Teddy to sit on command (unless they are really distracted by taunting squirrels or unless they are already sated by a wagonload of gold treats) and to lie down sometimes. We are working on the only one that really matters to me: Willie Come.
Gold treats come from the parts of meat dishes that older, paunchier folks like me should eliminate from their diets anyway (roasted chicken skin, the fat from the Christmas day standing rib roast, anything, practically that gives meat extra flavor). If Willie hasn't wandered too far away. . .if he isn't distracted by hunting small, scampering mammals. . .if he isn't playing with one of his best friends (everyone is his best friend). . .if he doesn't smell something stinky and alluring, he will come to me and sit when I call him, give him a jackpot of gold treats, and (as Tamar Geller recommends) make a party for him with a high, singsong voice and much praise and attention.
He has learned many important lessons from being treated like a "loved dog." Here's one: When we take our morning walk, he can get my attention by running as fast as he can down the back side of the dam, across the fence into the ranch, and directly towards the neighbor's cows. I then call "Willie come" and he races back across the pasture, through the fence, up the dam slope to sit at my feet. Then, I give him chicken parts from the zip-lock bag in my pocket. The first time he came back, I was as proud as if he had presented me with an All-A report card. The next day when it happened, I bragged about him some more. After that, I decided that I hadn't trained him; he had trained me. Before I started passing out the gold, he rarely crossed the fence. Now he does it regularly. I swear his ears are perked as he runs away, waiting for me to call "Willie come" so he can come busting back and get his jackpot.
I guess this is my week for lessons. I learned another one last night from Erin: Don't take your daughter to get tanked up on red blood cells on New Year's Eve, unless you were planning on staying up to make a party and welcome the new year in. We got home from the hospital about 9:00 last night, and Erin was . . .what's the word? Lively. Quite Lively . Walter and I, on the other hand, had visions of pajamas, absorbing, though not stimulating books, and a couple of night caps. Guess who welcomed in the new year? The Buengers, you bet!