Friday, August 29, 2008

Not a Superfecta

August 29, 2008

Dr. Russell's colleague Dr. Rachel Egler called me with Erin's scan results today. Her tumor is a little bigger, and there are some questionable lymph nodes in the area that weren't there before.
This seems to match what we observe clinically in Erin. . .progression but not terrible. Erin looks very well and doesn't complain about pain unless she is very active and putting her body under a lot of strain. Her labs yesterday looked quite good. We are prepared to move in a new direction (what that is, I couldn't say yet), and I think her body is also ready. Walter, Dr. Russell, and I (with Erin's input) just need to decide what happens next.

In the meantime, Erin had a great day at Jane Long today changing classes and seeing who she had in each class. We have tickets to the A&M-North Caroline soccer match at 6:00, but I think she is going to fore go them and head out of town for the weekend with her buddy, Jackson. Nothing like a weekend of fishing and outdoor play to take the sting out of getting to discontinue a medical regimen you didn't care for anyway.

In the meantime, keep sending good thoughts Hans's way. Sam and Will both got good news (good in the relapsed NB world, anyway), and Hans will have to wait for his until after Labor Day (and perhaps until after Gustav). I'm sorry we spoiled the superfecta, but we'll catch up in the next race.


August 29, 2008

As I walked around the lake this morning in the pre-dawn darkness, I understood how in the dark I really was. I will spend the day waiting for the phone to ring. When the call comes, the screen on my cell will say "Unknown" because the hospital blocks caller ID. Still, I'll know who it is. What I won't know, until I answer, is whether Erin's scan results yesterday will let us continue down the path that we know--eight classes a day at the middle school (confusing and yet exciting), chemo at home (yucky, but tolerable), Mystic soccer (tough and thrilling)--or whether we'll be thrown into the Unknown--harder treatment, probable hair loss, neutropenia, hospitalizations.

Wednesday, August 27, 2008

Be Still

August 27, 2008

I never have a video camera when I need it, and that's why I haven't won the grand prize on America's Funniest Home Videos.

Most of the time I have to walk Willie on a leash to keep him from bolting across the fence into the "rifleman's" property. [NOTE: The "rifleman" shot our neighbor's 12-year-old golden retriever at 3:00 in the morning a few months ago, stripped his collar, and dumped his body about two miles down Leonard Road towards the river. It made everyone in the neighborhood extremely angry, but I think we are all a bit intimidated by a nut who would kill a family pet in the middle of the night with a deer rifle.] Parts of our walk he can roam free, but the closer we return to home the more urgent my desire to have him on the end of the leash.

Last weekend it seemed especially unfair to leash him. Teddy and Uma were cavorting around freely (since they don't cross the fence), and we had picked up Willie's friend Tommy-Girl (who was also cavorting or perhaps more accurately parading her female wares) as we passed the far side of the lake. But I'm no softie. I clipped the leash on to his collar and proceeded up the road. It is one way I add to my fitness regimen: holding him in my grip as he lunges and throws his seventy pounds in various directions trying to play as with his friends and hie after Mrs. Bun. I soldiered forward, bent forward with the leash playing back over my shoulder. I tried to channel Ernest Hemingway bringing in a worthy fish. I struggled forward, not making much headway. I looked behind and figured out why Erin was laughing so hard. Willie and Tommy-Girl were having marital relations at the end of my leash, and I was dragging them both down the road. Talk about dead weight. It brought a whole new perspective to walking the dog.

Oh well, it's just a story to take your mind off of scans tomorrow. If luck is on our side, things will run smoothly. We'll hear good results on Friday, and start round six of irinotecan and temador next week. If not, then we will continue the process of fighting Erin's cancer in another direction. And so I tell myself, you can't control everything. Hell, you can't even control your dog when he's at the end of his leash. The best thing is to be still and open to the possibilities that you encounter.

Monday, August 25, 2008

Obligatory First Day of School Pics

August 25, 2008

I can't believe none of you thought the photo of "The Food of the Gods" in yesterday's entry was funny enough to comment on. I cracked up every time I looked at it.

Oh well, mark that up to the second thing I couldn't believe today. The first was that my baby, the one who is now 41 month survivor of relapsed neuroblastoma, started middle school this morning:

She even brushed her teeth first with time to spare before the 8:00 bell!

Sunday, August 24, 2008

How Do You Stay Fit?

August 24, 2008

Those of you who know me, know I had a Chet Edwards sticker on my new van well before I even had license plates for it. Thus, you would expect that I had prepared a cute entry for Erin's home page in case Barack Obama named Chet as his running mate (he made the final four, but not the championship). It included the following quote from Erin:

"Chet Edwards is a great man. He knows what he is doing and will help America. One more thing. . .he's is my best friend over age 11."

We were all a little disappointed, because the inauguration (was I getting ahead of myself?) sounded like loads of fun. Anyway, he didn't get chosen, but I don't think it's a stretch to say that had he been chosen and elected, we could not have had a better advocate for pediatric cancer and neuroblastoma in the White House. As it played out, he'll just have to put his full energy on getting the Conquer Childhood Cancer Act through the Appropriations Committee, where he is a high-ranking member.

On to less lofty, but perhaps more interesting topics. Erin, Walter, and I had a good last week of summer. Erin decided she wanted to work on personal fitness (which apparently involves me working on my personal fitness, too). Had I had the sense to settle in a neighborhood with other families and children her age, I suspect I would not be viewed as such a classy prospect to spend time with. As it was, we did cross country, off-road bike training on Monday (three miles, twenty three minutes) and kayaking on Friday. I took the other days off, but Erin soldiered on without me.

Thursday, soccer practice fit the requirements for a good workout. I can't remember what she did for exercise on Wednesday (though I could look it up in her little planning notebook, if I had the energy). On Tuesday, I tricked Elaine into lending me Nico and Adam, so I wouldn't have to be her workout partner. I think they went with marathon hopscotching as the AAD (aerobic activity of the day).

Hopscotching fit with the other retro theme of the week. Erin discovered Walter's complete collection of Classics Illustrated Comic Books and she has spent hours with them. Here are the first three in the series (I think we can all agree these are classics, even though perhaps not the best books ever written)

By the time you reach number 160 in the Classics Illustrated series, you might think they stretched the concept too far:

This weekend the Mystic '97 competed in their second and final warm-up tournament (as if we here in central Texas actually need warming up on the next-to-last weekend in August). It turned out to have worked out well that Erin focused on personal fitness this week. We were quite short handed at the tournament and played two of our matches (sixty-minutes each) with no subs and only an hour break between them. The girls (including Erin) were very brave and battled until the final whistle blew in each game.

Note to self: remember to email Erin's doctor with the information that Erin took a ball to the face kicked from about ten feet away that knocked her to the ground. No doubt if I don't, the radiologist will think Erin's neuroblastoma has spread to her cheek and skull when they read her bone scan on Thursday.

We do need to activate the coast-to-coast praying and luck generating network. In the latter part of the week Erin, along with Hans, Sam, and Will are all doing scans to check the effectiveness of their most recent treatments. I would like to think there was so many supplications being sent up that we cause a brown out in the prayer grid.

Tuesday, August 19, 2008

No Goals, But Hurray Anyway

August 19, 2008

You'd think I would be upset that the Mystic '97 scored no goals last weekend when their opponents racked up twelve goals in four games. They looked pretty lethargic. Instead, I was grateful that Erin made it to the pitch.

I think (hope? pray? expect? need to believe?) that Erin's back pain has resolved to its usual level of discomfort, as opposed to its concern-raising levels last week. In hindsight, I think she probably had a small virus and some sore muscles from overdoing during the Cypress Ball Festival, complicated by constipation. I don't know why the constipation took me by surprise, but I didn't even think of it until I had wasted several days considering other culprits. We eventually (by Sunday or perhaps Monday) got things moving, though if the first round of irinotecan we did in late May provides any evidence, we need to look for diarrhea to follow.

Friday, Saturday, and Sunday she sort of eased into feeling better (more energy, less complaining), but the progress was never convincing enough for me to accept that she was on the mend. Yesterday and today, thankfully, have been almost normal. Erin delivered meals-on-wheels with her buddy Jackson in the morning and then went to his house to play for a few hours. They met Nico, Adam, and Jesse at glow-in-the-dark putt putt. She is trying to get back in shape for soccer, so she did some aerobic work on her bike before the rains came last night--three miles cross country in 23 minutes. Today she has mainly just played with Nico and Adam. Her appetite is sluggish, but she usually eats at least one meal of decent proportion every day. The main contrast with last week is the return of her smile and a sense of humor.

We have moved the administration of the irinotecan from 6:30 a.m. to 9:00 p.m. with the hopes of sleeping off the toxicities and having a perkier school day. I gave her the option of waiting until later in the evening, then waking her to give it to her (like we did for the a.m. doses), but she has willingly taken it the last two nights--with a dark chocolate chaser--no gagging, no complaints. Now, if I can just stick with the routine for three more days, I can have a week off.

On a closing note, did anyone notice the Brazilian women's beach volleyball team's suits only had "Bra" written across them? Is that so they can tell which piece of the bikini to wear on top?

Friday, August 15, 2008

What Do You Do With a Drunken Sailor?

August 15, 2008

Erin had the kind of week that left me puzzling over a variety of possibilities.
She had a most excellent day on Monday, starting with her chemo bright (actually dark) and early, followed by a full morning orientation for a new GT program at her school, then two hours of swimming and cypress ball antics (see The Davis Report for details). She topped the day off with hours upon hours of playing with Nico and Adam. Tuesday wasn't nearly as fine.

She had a persistent headache (this is a common complaint during temador week), her right shoulder and upper arm ached (probably from throwing cypress balls), her back hurt (I can always think of a million reasons why her back might hurt, none of them as convincing to my deepest fears as tumor progression), and her chest was sore when she breathed deeply. She also ran a small fever. By noon she felt better, although I canceled her planned putt putt golf outing and made her stick close to home all day. Her temperature crept back up above normal in the evening.

She felt better on Wednesday than Tuesday. No fever; milder aches and pains. She did, however, fall asleep for about an hour in the afternoon. That night
she slept rather fitfully and claimed to have bad dreams during the night and during the nap.

Her headache was worse on Thursday. Her chest continued to cause pain when she breathed deeply. Her back was no better, but her shoulder seemed less tender. She is quite tired, but claimed she couldn't sleep. Our best beloved daughter (how can I put this delicately?) was WHINY AND NEGATIVE. She felt crummy enough to suggest a trip to the pediatrician to see if he had any ideas that would explain the way she felt.

Normal counts in every category and clear chest, ears, and throat eliminated most of the illnesses I was hoping for.

[Aside: Is it only cancer parents who start quizzing their children when they feel bad and are delighted when they have a constellation of symptoms that suggest childhood illness? I heard myself asking Erin leading questions, hoping I could piece together enough symptoms that I could conclude she had the flu or an upper respiratory infection or something:

Mom: Does your head hurt?

Erin: Yes, a lot.

Mom (hopefully): What about your chest? Does that still hurt when you breathe in?

Erin: Yes.

Mom: Good, baby. What about your throat? Does your throat hurt?

Erin: No (mom apparently looks disappointed). . .well maybe a little.

And so on.]

So there I was, contemplating Erin's complaints of pain and fatigue this week. It is so hard to sort it all out. How much of it can I attribute to some sort of virus? Certainly, headaches and fatigue come as a constant, if uninvited, companion to irinotecan and temador. Could she need more attention from the already unraveling mom and dad, who dedicated the week to launching Davis on his intercontinental adventure? Had asking her to clean her room after Ayesha's visit led to an elaborate work avoidance scheme? Maybe it was just an imaginative ploy to trick me into letting her watch more of the Olympics. Yet the answer that Pat Lacey calls the 500 Pound Man, (that is, will our scans in two weeks show Erin's cancer spreading?), kept rattling around in my head.

That's why when Erin came out of her room this morning singing that famous traditional sea shanty, "What Do You Do With a Drunken Sailor" I didn't stop to think about why my daughter had chosen to regale me with a song that begins with the indiscreet imbibing on the part of someone I have never met and whose subsequent verses each
suggest a method of sobering--or castigating, or simply abusing--the hypothetical sailor. All I could think of was that she was singing instead of grumbling. I joined in the "earl-eye in the morning" refrain and fetched her a little breakfast.

Erin ate a modest amount, mainly peaches and yogurt, and decided she wanted to go to Camp Lobo, an all-day program at her new middle school. It's almost 2:00, and I haven't gotten a call from her or anyone else at the school asking me to come and fetch her. I hope that means she's feeling well and enjoying herself and that I can move on to other worries (like whether Davis will wake up from his layover nap in the Charles de Gaulle airport in Paris to board his flight to Budapest).

Sunday, August 10, 2008

Top 10 Best Things About Vacation Ending . . .

August 10, 2008

10. No more thin, hard hotel pillows.

9. Coffee that actually tastes like coffee.

8. Always available internet access.

7. Everyone's poop is back to normal.

6. Adults and children don't have to share the bathroom sink.

5. More than one comfy chair.

4. Readily available vegetables.

3. Waking up pinioned to the bed by dogs nestling in under each arm (but on top of the covers)

2. Not having to fill the gas tank four times in a week.

1. Erin has access to a fully equipped kitchen (To understand why this made the number one slot, check out the photos below of the dinner that she and Ayesha cooked on Friday night.)

The Spread

The Bread Bear

The Potato Puff

The Roasted Zucchini with Tomatoes

The Kabobs with Couscous

Friday, August 8, 2008

Help! My Telomeres Are Unraveling

August 8, 2008 (otherwise known as 08/08/08. . .doesn't it feel smooth to type that?)

I can just feel my telomeres unraveling. What, you may ask, is a telomere, and why don't I just put a knot mine or stitch them up?

Each person has telomere caps at the end of their chromosomes. This region acts as a buffer during cell division so that cells don't lose important chromosomes (and that oh-so-crucial information each contains). As long as you have intact telomeres, you have less chance of producing genetic anomalies. Unfortunately, your telomeres get shorter each time their cell divides. So as you age, the buffer function deteriorates and eventually tissue can't repair itself properly. This leads to a variety of maladies that we associate with old age.

Now you may ask yourself if Vickie is just complaining because she's getting old. No, definitely not. Telomeres shorten due to aging, but also because of stress. And this week has taken me to new peaks of stress.

The week began peacefully enough. Monday brought the beginning of the end to our New Mexican vacation, but I still had the luxury of sitting with my feet up on the balcony of our hotel, viewing the mountains and shivering just a little, while sipping my coffee and nibbling a warm chocolate chip cookie to start the day. By midday we had hit the road, and by Tuesday afternoon we had arrived back at Chez Buenger, facing piles of mail and newspapers, a plethora of phone messages, and an e-mail queue longer than the line for the bathroom at an Aggie game. We had a week to get Davis packed for 18 weeks in Hungary (did you know that Hungarians spend forints, not euros?) and clinic in Houston for Erin, plus more placement testing for the school year and soccer revving back up with practices every evening. My "to do" list also contained a variety of extended family obligations about which I can't share details, but it involved opening bank accounts, transferring vehicle titles, and making applications to various state agencies.

Yet even in the midst of knocking off items from the list (while wondering if applying clear fingernail polish to my chromosome caps would keep them from unraveling further), I was struck with the idea of how pleasant it was to feel stressed over something other than Erin's cancer. Of course, I'm sure I'll add that to the mix in the coming week or two, since Scan Fiesta is on our docket for August 28.

Clinic went fine yesterday, quite similar to previous labs three weeks ago. We'll start round five of The Rhino on Monday morning (pre-dawn).

HGB 11.5 (normal)
WBC 2800 (low)

ANC 1430 (almost low normal)
PLT 316,000 (normal)

BUN 24 (5-25)
Creatinine .7 (.2-1.2)

Apparently, in our trip across the Texas and New Mexico desert on Monday and Tuesday, we missed the memo that the clinic closed down on Tuesday as a precaution against Eduardo. That meant that all the patients with Tuesday appointments showed up at clinic yesterday (and all apparently arrived moments before we did). We managed to pass the time successfully and with reasonable cheer primarily because Erin's great friend Ayesha joined us for the trip (in fact, she has joined us for an extended stay and playfest all week until Sunday). Our visit also coincided with a visit from Houston Dynamo defender Craig Weibel, so Erin and Ayesha got to join Weibel's Warriors and score a couple of cool orange Ts with Weibels signature across the front.

Erin fans, we also got to meet a newly diagnosed NB patient, Jessica Goff. She is pretty bummed about having to sit out this fall's soccer season, although she and her family have a great attitude and I'm sure will make it through this tough part of treatment with few problems. They have decorated her hospital room in a China-theme to celebrate the Olympics. It sounds like the Goffs, similar to the Buengers, travel heavy. Stop by her website: and leave them all a message of encouragement.

I don't know when the fun will stop. My niece Annabelle went home yesterday, but my other niece, Emma, and my sister, Katherine arrive this afternoon for a long weekend of mischief and fun. Since I'm not ready to stop having fun I will leave you with vacation pics.

Here's a view from the hiking trail at Cloudcroft:

And our destination at the trail's end. This is the Mexican Canyon Trestle, an amazing railroad bridge built about a hundred years ago. Until the 1940's it was the only way, other than pack mule, to get to Cloudcroft. Note how tough it must have been to get supplies to this site 9,000 feet above sea level:

Here we are along the trail:

We also played miniature golf with Aunt Norma and Uncle Dave. Norma was the big winner (because she can actually putt accurately and calculate the pitch and rise for the holes).

Erin's no pro, but she does bring a certain sense of focus to her game:

Sunday, August 3, 2008

7 For 9

August 3, 2008

I can't wax too philosophic on a public computer in the lobby of The Lodge at Sierra Blanca, but I wanted to let you know that Erin was accepting disciples to study her methods at the horse races. She was in the money 7 of 9 races yesterday.

Tomorrow our experiment with cooler air will come to an abrupt halt as we will return to 100+ degree weather and our homeland, Texas. We should be back home by Tuesday, set Wednesday aside for laundry, and head to Houston for a regular clinic appointment and labs on Thursday.