No New Is Good News (Plus, Check Out This Wig)

At Dr. Ueno's office, after reading my good PET scan report.

Happy kids at our recent Bandera getaway. I took them on a "Mom's secret surprise" weekend, with the location only revealed upon arrival.

Just back from Houston, and we do not "have a problem"! Tuesday was the usual "extreme scan-over" marathon. I drew the radiologist known to be very picky and less liable to commit to conclusions. But the worst she said about a couple of bone spots was "indeterminate": It's hard to read bone, and often healing bone will look like this. So we continue to be optimistic, particularly since she never used the C word (or the M word, for that matter) in her impressions.

So...I celebrated by going to a wig shop. I was innocently trying this blonde wig on, just to check the style. And I said to myself, "Not bad. So, why not?" And let me tell you, the husband is digging it! Stay tuned for more wigs to come. If a wardrobe of wigs is OK for Dolly Parton....

Fun update: We had a terrific time in Bandera...We had a lovely trail ride and the kids rode a second time and got to canter...Hank summoned his inner Eagle Scout and made a fabulous campfire...Sally is getting the kids (at least a little) interested in star watching in preparation for Big Bend next month.

Oh, and thanks to my late dad, I bought a Honda Odyssey. My 10-year-old van had to be put into "car hospice." Now I am sittin' purty! And the DVD player will just the thing for the wide-open spaces of West Texas.

Love to all,

Sally

A New Look

It's...back! Did someone get the color wrong? Oh, well!

Which inspired me (with apologies to Neil Young, "I Almost Cut My Hair):

I almost combed my hair

Happened just the other day

It was getting kinda long

Could have said it was in the way (of my wig)

So I, by and by

Sometimes let my "freak" flag fly

Cause I feel

I'm owing

Someone

Someone who's putting off her mammogram. Someone who thinks we've "conquered" breast cancer. Someone less lucky than me.

Love and kisses,

Sally

Miracle in Houston!

Was it a bird...was it a plane...was it Santa? No, it was the radiologist who interpreted my quarterly scans this week. In her immortal words:

PET CT Impressions:

No evidence of active bony metastatic disease representing compete metabolic response to interval change in chemotherapy.

In nonscientific terms: a miracle. With Stage IV cancer, you will NEVER hear the word "remission," and certainly the word "cured" will ever escape a doctor's lips. The closest you will ever get is N.E.D. (no evidence of disease).

This was beyond my wildest dreams, because so far nothing had worked. The best Hank and I were hoping for was "not much more cancer" or "approaching stable." But to get to NED after just a few months of chemotherapy is, in my doctor's words, "highly unusual," and in my MD/PhD brother-in-law's words: rare. In my words, miraculous!!

In a major study of my particular drug cocktail, NONE of the 350+ breast cancer patients in the study gained remission.

We will develop a game plan next week, but it's possible I'll be able to back off chemotherapy or switch to a maintenance drug, with quarterly scans and chemo only when and if it is needed.

This is nothing short of a new lease on life for me and my family. There are no words to describe how I feel. I think I'm still in shock! Was this why I was "told" to have courage?

Sally Is Back on the Air

Hello, all. Sorry to have been so uncommunicative, but I have been the poster child for "distracted" the last several weeks. I've been dealing with some major family changes, starting chemo, and developing lymphedema--which required about 20 appointments to get the situation under control. But things are looking up.

Chemo is going pretty smoothly so far. I had to skip one treatment because my white blood cell counts were too low, but otherwise it has gone swimmingly. Fingers crossed: I will have followup scans in November to see where we're at.

Family Update

On September 8, my dad passed away after several years of physical and mental decline. He suffered from a disorder known as Lewy Body Syndrome, which shares some of the physical debilitations of Parkinson's along with dementia.

My dad was always an upbeat guy, and even when he became demented he chose (I like to believe) to relive happy memories traveling the globe. Even though I'm glad for his release, losing a parent is a tough milestone. I feel blessed that the five of us were in California for Dad's 80th birthday in June.

June 18: My last visit with my daddy.

Who's the new girl?

So there I was, horrified at the prospect of losing my hair, and boy, was I in denial about that. (I've always been a little vain about the exclusivity of having reddish hair.) Some people don't lose their hair on my relatively mild taxol regimen, and I thought I'd squeak by.

Well, it started to fall out by the boatload and was threatening to look like witch hair. I had two choices: find a production of "Macbeth" and audition to be one of the three witches. ("Boil, boil, toil and trouble") or shave it off. A much more practical choice. Although the witches' brew idea does somehow play into the whole chemo thing. ("Cool it with baboon's blood. That will make it firm and good.")

Boo hoo, poor me, getting the buzz cut....until I looked down and saw ALL THAT GREY STUFF on the floor. Ick!

Frumpiness, be gone! Et voila, the new me. I have released my inner Ann-Margaret (now including long bangs.) In your face, cancer!

My pink brigade along with my wig "artiste," Bonnie.

Thank you all, dear readers. Your interest in my saga gives me strength.

XO,

Sally

Hello, Friends

Well, it's three weeks into chemo and so far am feeling just fine. Even working out. The only catch is that a couple of days ago my scalp starting tingling, and here came the hair. I lost a lot, but fortunately started with a nice, thick supply. Today, Sunday, the tingling has subsided so I'm hoping the fallout is over. The Avastin also has only the most minor of side effects thus far.

My big "project" is dealing with the lymphedema (swelling) I've developed in the arm thanks to the many lost lymph nodes and radiation. For the last month, it's been wrapped in a bulky compression bandage to get the arm to its correct size. The Michelin Man has nothing on me when it comes to accessorizing. Soon I will get a custom-made sleeve--rather like daily pantyhose for the arm. I'm thinking about also getting an outrageous-looking one from lymphedivas.com. This is a nuisance with daily excercises, massage, and 1001 therapy appointments. Trying to be philosophical about this new high-maintenance deal.

My birthday week, which I had been eagerly looking forward to (54, whoo-hoo!), got very messed with because my dad went into a semi-coma. The hospice nurses gave him 2-3 days, but then he woke up and asked for a cheeseburger!

The chaotic week, however, was rescued by my dear friend Kristen, who surprised me with a new guinea pig.

Say Yes to Drugs (Selectively)

Yesterday I met two new friends in the chemo lounge:

Taxi-Taxi (Taxol)

As in..."Taxi, taxi! Get me out of this dangerous neighborhood, and step on it! I'll triple the fare if you can get me to the city limits, pronto!"

and her friend...

Captain Avastin

As in..."Avast, ye laggards! It's over the side with you lot. We're feedin' ye to the fishes!"

So far, so great. A bit wound up last night due to the steroids that were added for the loading dosages, but otherwise tickled pink (so to speak).

Love to all. Photos follow.

Sally

(1) Caroline on her 14th birthday. (2) Hello, and a big wet kiss, from Shamu.

Gather Ye Rosebuds (Photos first this time)

Touring our alma mater this summer: "Where it all began," at Duke.Our evening with the Atlanta Braves was a huge success; Henry and Sally especially were like pigs in mud.

Hello, dear readers,

We have been lucky to have the summer fun I wished for. We recently returned from a lovely ten days in North Carolina, with a stopover in Atlanta. Madeleine turned 17 on the trip and patiently endured Mom and Dad's trip down memory lane at Duke, and we spent the next day doing the full-blown admissions tour, etc.

The kids had memorable grandparent time in Highlands, including two tenderfoot fishing expeditions with Hank's godfather. The 70- and 80-degree weather was fabuloso: it's been 100+ at home since late June and we've all been hiding inside or in pools.

But now it's back to reality. We had a tense trip to Houston last week. It wasn't great news, but most of all, it wasn't horrible news. (Thank you, angels.) The cancer is still "only" (hah, hah) in my bones, and not in my liver or lungs. If I can keep it to the bones, I can hope to be called "stable" at some point and maybe even for a long chunk of time. (Please, angels, I promise to be good.)

But this managable news comes at a price: I must abandon the "easy" hormone treatments and go on chemotherapy this week. It will be weekly Taxol, one of the most tolerable chemos, and possibly also Avastin, which blocks angiogenesis, the process by which those evil suckers develop and maintain their blood supply.

So this means no hair, some fatigue, and a whole day each week at Chez Chemo. I have plenty of friends there, so it won't be lonely. My intrepid caregiver will likely be at my side much of the time. Perhaps that Memphis boy will sing me the R&B tune that goes, "Put on your high-heeled sneakers/And your wig-hat on your head."

This weekend we're having a last summer blowout at SeaWorld. Caroline will turn 14 and hopefully Shamu will use his water-displacement talents to wash away our cares.

Love to all,

Sally