I Won a "Vacation"!

BIG NEWS FROM HOUSTON: My latest PET scan showed "no evidence of disease," and this from the radiologist known to be super-picky. Of course, with Stage IV cancer, the word "remission" is never used, but "NED" is as good as it gets. As a result, I get to skip chemo for three months, which is especially welcome news since my side effects (touchy tummy, fatigue, tingly toes) were starting to become troublesome. I'm going on a hormone therapy and will stay on the non-chemo drugs that I get via IV as a hoped-for safety net during the "vacation."

It's always a huge treat when your oncologist smiles. And my MD/Phd pharmacologist brother-in-law, who helps develop cancer drugs, called this "spectacular" news and added, "You have been 'chosen.'" Strong words and strong medicine.

I am blessed. And grateful for such supportive relatives and friends.

XO,

Sally

Wait Till You See!

This is Dustin, the newest member of our household. Hank knew I've been wanting a rabbit for a long time and surprised me by locating a breeder just before Christmas. Way to go, Hank! Dustin is an English lop--my fourth of this type and eighth overall. He is the sweetest-natured, calmest rabbit you'd ever meet, and has quickly made himself at home. He and the guinea pig are going to share a cage. The dogs know the drill already with small pets; once the rabbit is convinced they're OK, we'll be on a roll. Off to Houston shortly for scans tomorrow.

Love,

Sally

Christmas Sweetness

This week Madeleine's high school choir performed at Chez Chemo, as my friends and I call the infusion room at our clinic. She recently cut her waist-length hair for Locks of Love! These are just a couple examples of why I am such a lucky mama. (And these lucky ducks are performing in China in March.)

Wishing you cozy holidays full of blessings,

XXX

Sally

New Metaphor for B.C.

Everyone keeps talking about the rollercoaster of having cancer, which it is: Wee, my scans were great. Eew, it's time for another one.

The rest of the time it is, in my opinion, like walking a tightrope. Fall one way, and you're blissfully oblivious or even, God forbid, cocky about the whole thing. Fall the other way, and the beast has robbed you of hope.

And then there's the "elephant in the room" that becomes apparent when we lose a friend.

Is this a circus, or what? If that's the case, I'm going to (in my mind, at least) get one of those sparkly outfits and make the pretty horses dance.

Love to all, and happy "awareness" month,

Sally

Carrie

Jeanne, Marie, me, Sue, and Sandy at our 'slumber party' with Carrie.

Friday I lost a sweet friend and guiding light, Carrie Madden of my support group. Carrie had inflammatory breast cancer, a scourge that makes my disease pale in comparison. (The pathology is completely different, even though the disease starts in the breast.)

Carrie wasn't supposed to make it past November '09, but canceled those plans, so to speak. Instead she eked out another year with the help of some big-gun chemo until a few months ago when she declared 'no more drugs, no more scans.' For a year, she'd been bearing the inevitable with grace and peace: a brilliant gift to all who knew her, cancer or not.

A month ago, several of us spent a Sunday afternoon with her. We all piled onto her bed and talked about a boatload of topics, from the mundane to the philosophical. It was one of those spontaneous, perfect times that will stay in the memory.

Carrie echoed in her actions what our group members all know: It's so much more than a band artificially assembled. Carrie specified that all memorial funds go to the IV League...our group with the name inspired by our 'elite' Stage IV status. (The country club nobody wants to join.) We are blessed that Austin's Breast Cancer Resource Center created our group, a lifeline in many senses of the word.

Thanks to all for your loving support.--Sally

Good Scans!

Just back from Houston, with happy scan results. Nothing visible in the liver, and bones stable. Thanks be to the deity!

Guinness Is Good For You

Hank and I have just returned from an 11-day adventure driving in Ireland, our 30^th anniversary cum cancer-antidote trip.

Talk about good for what ails you:

Glorious sweeps of pastureland—it really is that green! ....Crashing waves with the spray hanging in the wind..…200-foot precipices overlooking the Atlantic (“next parish, Boston”)……Petite mountains that rise so quickly it’s as if they’re enormous…..Bossy sheep that like to play “police checkpoint.” Hearing Gaelic spoken on the Aran Islands. Butter for breakfast, butter for lunch….and later, Guinness.

And, of course, pubs, pubs, pubs. I am a new groupie for anyone who plays the flute-like, melodic uilleann pipes (smaller cousin to bagpipes). Also, I seem to have caught on with the men-over-70 set; it’s something about the wig.

We visited several neolithic stone circles where I channeled my inner druid, and Hank caught a glimpse of his. One of my many favorite moments: standing in a cow pasture, all stillness but for a few songbirds, face to face with a 12^th-century Celtic high cross. No bustle, no entrance fee. Just us and the ages.

Hats off to Hank, the safe and daring driver and taker of 900 pictures. And even more hats to Hank's parents, who held down the fort while we were gone (even though they're moving on Friday!).

Love to all,

Sally

Phew! Dodging Another Bullet

That whizzing sound that breezed past my ear today was made by my latest PET scan report. Fabulous news! My liver lesion, that un-friend that showed itself in April, has shrunk and--better still--did not even register as cancerous activity on the scan. The radiologist noted "improved metastatic disease" in bones and elsewhere and that "no definite new disease is noted."

This means that the Taxol continues to do well, and I'm staying that course. Back for followups in September.

The side effects have thus far been quite manageable. My acupuncturist has done worlds of good in counteracting some nerve damage in my toes, and my hair continues to grow. Am a tomboy this summer, which (considering the 100-degree weather here) is not altogether a bad thing.

Off tomorrow to visit my mom and my Uncle Cleave in Connecticut. There are few things calmer or prettier to me than a New England summer day; thanking my lucky stars for the ability to enjoy that in a relaxed fashion.

Best to all,

Sally

Here We Go Again

As of Tuesday, I did go back on Taxol. Keeping my fingers crossed for minimal side effects, though am noticing a bit of an 'ick' feeling and a little more toe tingling. Glad I've gotten cracking on accupuncture, which restored all the feeling after the last series. Also may get started on some Chinese herbs--they're working wonders for my daughter's tricky stomach. I am reading the breakthrough book, "Anti-Cancer," by a research doc/cancer patient, and am ready to roll on some major dietary changes and other lifestyle improvements. Fortunately, we've already gone vegetarian at home. 

Best to all, 

Sally

Out, Damned Spot!

That's my lovely liver in photo #1 and photo #2 shows my doc reviewing my full-body PET scan. He rightly says he sometimes "hates his job."

Well, my five-month vacation away from Cancerland is over--and then some. I'm just back from Houston, and yesterday found out that there has been some disease progression in my bones, but more importantly, migration to my liver. Fortunately (hah!) it is just one spot.

I meet with my "Austin genius" on Tuesday (it's lovely to have more than one). Most likely I'll return to Taxol, as that worked so beautifully, quickly, and without nausea last fall. The plan has been to "rechallenge" with more Taxol when the time came. However, this is a "visceral" vs. bone metastasis. I don't think this changes the drug, but theoretically it could.

Please take note that I am using my ladylike English-major language to describe all this, but inside I am cursing like a sailor. I had mentally prepared for this news but there's nothing like hearing it from the horse's mouth. As usual, my Research Department husband is on the case and getting ready to chow his way through the Internet, as a couple of trial things have come into the discussion. The kids, bless them, are taking this in stride.

Good thing I've got three wigs. Oh, man, isn't it disgusting that I can always find a positive within the oobleck. Pollyanna does what she has to do to get by! I do have MUCH to be thankful for, including all of you who read this.

Speaking of life, am planning a weekend with just my girls to see "Wicked" when it comes to Dallas in June, plus retail therapy. Caroline's escaping uniforms after eight years and needs clothes for high school. (Excuses, excuses!) Then, it's back to Dallas in August with Henry to see our beloved, beautiful, precious Red Sox play the Texas Rangers.

Kisses to all!

Sally the Tough Nut

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

Summer Highlights

Our fashionista, Caroline, learns to sew, following in her mom's footsteps.

Father and son after a funny-dive session at Balmorhea Springs in West Texas.

Could there really be T. rexes in Arizona? Madeleine is not taking any chances.

Exploring the dunes near San Luis Obispo.

Hello, all. I hope this finds you enjoying your summer like we are. We are busy making up for the Lost Summer of 2008 (with all my treatments). I've actually gone hours for a stretch without thinking about b.c.

We recently returned from California, where we saw our new newphew and celebrated my dad's 80th birthday. The kids and I toured Los Angeles while Hank met with potential clients. We took the doubledecker bus around Hollywood as well as a 'homes of the stars' tour. We were at Michael Jackson's gate "the day before." There were fans hanging out then, so you can imagine what it's like now. It was a fun day, although I did feel a bit of opulence overload when all was said and done. We also showed the kids our apartment by the beach, where we lived more than 20 years ago. (Egads!)

We are just finishing up a visit by my mom (from Connecticut). She arrived amid our record-breaking 100-degree heat, so we were grateful my friend Carolyn's invite to see the fireworks from a 21st-floor downtown club. Talk about ringside seats!

Health news: My hemoglobin has risen to normal levels! Hurray! That means my energy is mostly back. It can be hard keeping up with the Joneses. August 10 we return to Houston for scans and to see how my monthly Faslodex shots are doing. Scan-xiety, here we come. But in the meantime, we're enjoying the zest of summer.

Love,

Sally

Another Fork in the Road

Hello, everyone. A quick update:

Since the stem cell transplant yielded only 'mixed' results (perhaps a bit better than the outright flunking described in my last post), we are in the midst of planning next steps. Back to Houston for a one-day flying trip yesterday, and a pow-wow with my Austin doctor this morning. The rollercoaster ride continues. Trite, but true.

I may be staying with hormone therapy, which might still offer some benefit. Maybe, maybe could do this with a targeted therapy drug now in trial for use with breast cancer.

(Am I a wo-man or a mouse? That is the question.)

And then there's chemo....and then there's the need for a better summer with the kids this year vs. last year's, shall we say, medically focused time.

XO
Sally

Cancer Thumbs Its Nose at Me

It has not been a good week. In fact, it's been one of the worst--certainly an un-celebration of my first diagnos-aversary. The samarium trial is considered a flop; I have new lesions in the bones of my back and legs.

Perhaps I was being Ms. Smarty Pants in thinking that the trial would work well for me because the samarium transplant had helped my friend Marcia for a year, and she had lots more bone involvement going into it. I thought--and probably Dr. Ueno thought--my disease would be stable for some length of time. Talk about the proverbial rug.

A warning angel plopped down beside me


I'd had a bit of a premonition that all was not rosy, thanks to a major coincidence (God-incidence, no doubt). On Monday while I was waiting for a scan, a friendly woman sat down to me. She'd seen that I was walking stiffly and asked me if I had cancer in my bones. Lo and behold if she wasn't #2 in the trial! Now WHAT, I ask you, are the odds of accidentally meeting one of the other seven? Her disease (also more advanced than mine) was stable for just seven months before progression to her abdomen.

Silver linings: (1) The disease is confined to my bones. (2) I've been watched closely. (3) I feel good. (4) I have hair.

What next?

Dr. Ueno has told me of a new targeted therapy--a nonchemo, and therefore 'gentler' drug--that has been successful in some other cancers and is now being tested on breast cancer patients. Because I want to avoid chemo for as long as possible, I am considering it. We are seeing an expert on this drug at MD Anderson on May 21. It's a Phase I trial. I am in no mood to offer myself up as a lab rat again, but I do want to know more.

The story gets better. I have a new doctor here in Austin. Dr. Kampe is a former researcher and devoted to the latest and greatest for breast cancer. His blue eyes light up when he talks about drugs coming down the line that could at some point turn this into a chronic disease. You've got to love that attitude. He did his UCLA fellowship with the man who discovered the wonder drug Herceptin (not applicable to me), so he's not just making this up.

It turns out that there is another trial of the drug mentioned above, in conjunction with hormone therapy. There are still some hormone therapies I haven't tried yet that could control the disease. Might be good if it all works out. We will talk about all the options in more detail when we see him next on May 22.

Best part of our visit: As Dr. Kampe was about to leave the exam room, he turned back and said, "There are still plenty of reasons to hope." I will catch that ball and run with it.

Bright sides of the Houston visit

Marcia, Hank's and my new soul sister (#4 in the trial), was ever so gracious to host us at her new apartment that she'd barely moved into herself. Gabfests, wine, cool apartment...what's not to like? Marcia is doing quite well on a new drug, and is in 'seize the day' mode with an upcoming month in Europe, a cruise, and more.

Living it up with sake and sushi in Houston.

A thing of beauty is a joy forever


Collapsible crown of a 1st-century nomadic princess.


If there is a word beyond exquisite, I do not know it. In Houston I was lucky to see an art exhibit of once-lost treasures from Afghanistan. At great personal risk during the 1970s civil war, Afghani curators hid away hundreds of intricate solid gold and inlaid ornaments made by nomads of the 1st century. These traders on the Silk Road were influenced by cultures from Egypt to China: Imagine golden Aphrodite figures in Indian dress...Roman coins...nomadic figures riding Chinese dragons...all clearly crafted by passionate craftsmen.

At one point I was so mesmerized that a guard had to pull me away from a display case. I think I was about to fall in! There were also artifacts from a city from the reign of Alexander the Great. Much of what was left behind was destroyed during the civil war with the Russians and then by the Taliban. The exhibit travels next to New York.

http://www.nationalgeographic.com/mission/afghanistan-treasures/index.html

I will always be grateful for that joyful day before I found out The News. Love and beauty transcend the ages. And life, all in all, is a good thing.

Hugs to all for following my story,

Sally