Friday, November 20, 2009

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?

Wednesday, October 7, 2009

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.


Sunday, September 6, 2009

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 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.

Thursday, August 20, 2009

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.


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

Saturday, August 15, 2009

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,

Tuesday, July 7, 2009

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.

Friday, May 22, 2009

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.


Sunday, May 17, 2009

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.

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,


Tuesday, April 7, 2009

What's Next?

Hey everybody!

I thought the post-transplant fatigue wouldn't be such a big deal. Hah-hah! My hemoglobin continues to lurk at low-normal, and therein lies the rub.

Oops: I didn't factor in just HOW BIG the transition would be from a two-bedroom apartment, one husband, no pets, and lots of takeout to my (nonetheless lovely) Erma Bombeck reality. Fortunately I am blessed with a husband who enjoys carpools, a 13-year-old aspiring chef, a 16-year-old chauffeur/errand runner, and a boy who makes his own lunch.

When it gets to be too much, I simply fold my tent. Thank goodness that I can. (Green tea and crossword puzzles really do the trick.)

My first followup scans will be May 11 with doctor visit on May 13. On April 16 I go (briefly) under the knife for a new port-a-cath to allow infusions of the bone-strengthening medication I get monthly.

As they say in the British armed forces: "Carry on!"

Hugs to all,


Tuesday, March 24, 2009

March Update

Well, so many folks have been asking...

We had a very auspicious return home March 6. On the way, we received a text message with a picture of our brand-new nephew, Liam. Moments later, spotted the first of this year's bluebonnets. And our dear friend Carolyn had secretly put "Welcome Home" balloons on our lantern. A great day!

We had a quiet week readjusting, followed by a sweet, low-key spring break with the kids.

I am tired, but if I stay shy of hitting the wall energy-wise, life seems quite normal. Still have creaky knees, but they're much better.

Our other recent family news was the loss of our precious elderly guinea pig. He lasted 10 days after our return, then died in my lap one morning. He was quite the personality and is greatly missed. The kitchen seems unnaturally quiet without "The Pig" whistling for room service!

Thursday, March 5, 2009

Home, James! (Plus a Closing Story)

For a week, I've been humming The Band's line: "Any day, now, any day now, I shall be released." Well, the day has come and we're driving home today!

This will be my last blog entry until May, when we return to Houston for the first of many followup scans, that over time, will tell the tale as to the success of the trial. Uncertainty will rule the day, and a long time will have to pass before anyone
dares to use the R word (remission).

Before we go, I have two important things to say to all of you:

1. A thousand thank-you's
(complete with electronic hugs) to all of you who've read m
y blog, sent cards, visited, kept me in your thoughts, plied me with goodies, fed, drove, or cared for my children, called--and prayed. I would never have dreamed there would be so many of you rooting for little old me.

2. I must tell you a story
about why I know this trial was the right thing to do. You skeptics will roll your eyes, but bear with me.

Back in October before I was serious about the trial, the hospital began the insurance paperwork, fully expecting months of haggling over payment for this $150,000 experimental procedure. The approval came through in TWO days. Suddenly a huge decision was upon me.

It just so happened that this coincided with my departure on a retreat into the beautiful Hill Country with women of my church for a weekend of meditation and yoga. I was looking forward to some gloriously quiet hours in my treetop room and had brought along a 400-page, very intellectual book on stem cell science. I was looking forward to a thoughtful weekend to start weighing the pro's and con's in earnest.

To kick off the weekend, my dear friend the Rev. (or rather, the Really Cool Rev.
) Cathy Boyd led us in a 15-minute meditation. To keep us focused, Cathy suggested we think of a word to concentrate on, a word summarizing our intention for the weekend. Thinking of my weighty tome and my upcoming brain workout, out of a hat I picked "clarity."

Breathing deeply in and out, I repeated "clarity" over and over.
Then suddenly, ALL BY ITSELF, the word changed. I know with absolute certainty that some force outside myself (the Holy Spirit, the universe, an angel in the form of my late stepmother?) changed the word. This was not a simple upwelling from my unconscious. It was like thinking you're alone in a room, minding your own business, and then someone comes up and taps you on the shoulder.

The word "clarity" was wiped away and became "courage." Suddenly I was weeping.

For two weeks I contemplated this message: Did it mean I should
take a leap of faith and do the trial? Or, was it telling me to follow the conservative standard of care and face whatever came my way? I finally decided I was being led to bold action.

This thought, that someone or something loves me enough to inform me that I can be brave has taken a while to sink in. I can think of no greater honor.

Since then, say, having a huge needle inserted into my hip, feeling blood run down my shoulder, seeing a lesion impeding on my spinal fluid, I've started to panic then told myself, "Hold on, Somebody thinks you can be brave. You, Sally the Wimp, who white-knuckles every plane takeoff." And we'll see how I do during the inevitable "scan-xiety" whenever it's time for diagnostic imaging to see how things are going.

In my spiritual life, I've always been a searcher, never a witnesser (Episcopalians are just that way), and certainly I'd never felt "called." But now I know that feeling.

Well, skeptics, that's my story and I'm sticking to it.
And isn't it entirely fitting that I, the lifelong lover of words, should have my life changed with a word?

Amen. (Photos follow.)

I found this on-campus banner to fit the theme of my own adventure into the unknown. Those who've known me 'forever' know that I actually was a Mustang Sally in college, so it's true that (with a tip of the hat to our country's very first female astronaut, Sally Ride): "All you want to do is ride around Sally. Ride, Sally, ride!"

Words to the wise as I get ready to leave the clinic.

Samarium Babes, Unite!

As we're getting ready to leave Houston, we were glad to be able to spend more time with our new buddy, Marcia Steele, who was #5 in the clinical trial. Marcia is a retired Navy chief and recruiter and avid disco dancer. Would you ever guess from looking at this picture what hers and my mutual "secret" is? (Harem mask aside.) As I keep telling folks, "I feel fine. It's just the radiologists and pathologists who disagree."

Plus we have our very own Breast Cancer Babe groupie!

Thursday, February 26, 2009

A Light at the End of the Tunnel!

Great news: My counts are rebounding sufficiently so that, if all continues to go well, Hank and I can return home at the end of next week (around March 6 or 7). We are SO ready to get back to the kids! This photo taken at Rice by Hank says it all:

Monday, February 23, 2009

Family Reunion

Sunday night went to bed smiling following a lovely 24-hour visit from Hank's parents and the kids, who we had not seen in a month.

Blood counts heading in the right direction, so I'm cautiously optimistic about coming home before long at all!

Saturday, February 21, 2009

I Get "A" in Platelets!

Everything's proceeding well here. The hemoglobin infusion made a huge difference in my energy, though at times I move like an elderly lady. I have new sympathy for those who must move slowly.

The really good news is this: The typical stem cell transplant-er (notice avoidance of the word "patient") will at some point need a platelet infusion to protect against uncontrolled bleeding. Well, mine have not only stayed high enough to avoid a transfusion, but they're actually rising. Good work, bone marrow!

My white cell counts are still low, keeping me immunocompromised for now. The speed with which those cells rebound will determine when we can come home--sometime in the first half of March, most likely.

Must dash and get ready for the kids' visit!

Thursday, February 19, 2009

A Big Heart

Caroline's seventh-grade class sent me this valentine. Los Siete, you're the best!

Don't know what I'd do without my trusty caregiver/driver/patient advocate, etc., etc. Everyone needs a buddy on this field trip.

Tuesday, February 17, 2009


Yesterday was a 10-hour day at the clinic. (Should I be getting a paycheck?)

However, I was able to spend the last few hours of that reclining while I received a transfusion of beautiful, burgundy-colored hemoglobin. (Thank you to whoever donated that!) Hoping for more energy today!

Best to all,


Saturday, February 14, 2009

Happy Valentine's Day!

In keeping with the "red heart" theme of the day, my hemoglobin count is high enough to skip a transfusion for today. Don't challenge me to any stadium climbing, though!

Riddle of the day: If I should walk into a bank with my surgical mask on, will the tellers press the panic button?

Looking forward to a visit from Cathy Boyd today and to having the kids and Hank's parents up next weekend. Finally, they'll be able to visualize where we are!

My little shrine: the girls' window art to remind me, my 'courage' angel from Mia, and a Tibetan prayer wheel from our dear college friend Ken.

Celebrating a new lease on life!

Tuesday, February 10, 2009

Happily in a Holding Pattern

Hello, readers!

Medically speaking, it's a case of no news is good news now! (Now if I could only zip back in time and re-apply that idea.) My blood counts are very stable and I feel really good, if a bit tired.

I woke up the other morning thinking, "Hmm...gee...someone has cancer. goodness, it's me!" I call that Wishful Forgetting.

In keeping with clicking on "Restart Bone Marrow" and the Season of Love this week, my dear buddy Mia took me to a gourmet, atmospheric lunch today. Definitely a celebration!

So many people have reached out to me during this key week in my little old life, and Hank has been taking extra-special good care of me.

There was a deejay in Atlanta whose catchphrase was "It feels so good to feel good."

And as odd as as this sounds, all I can add is, I'm grateful to have so much to be grateful for!


Saturday, February 7, 2009

"The Boys Are Back in Town!"

Hurray! My stem cells were transplanted yesterday in a four-hour infusion. Naturally it was quite a process. The nice technician patiently babysat each of the six bags, carefully removing them from their dry-iced containers, where they had been stored at around -130 degrees C. The nurses and Dr. Ueno checked, rechecked, and rechecked my 'inventory.'

Thanks to ALL who sent birthday cards and notes this week. Wow, and Wow! I will enjoy poring over all of your funny, sweet, and loving messages. (Tax prep, get behind me. I am goofing off today!)

This feels like a new lease on life, and this glorious springy morning we're having right now perfectly reflects my mood. The birds are singing and the breeze is sumptuous!

Best to all! (Photos below.)

"Reunited, and it feels so good!"

The preservative used in storing the stem cells caused a crazy, tingly feeling on my tongue, so it helped to give it something to do. As a bonus: word games to celebrate the day!

Friday, January 30, 2009

The "Countdown" Continues

Hello, all!

Only have energy for a brief note today. My blood counts continue to drop: white blood cells (immune system), platelets (which control clotting), and hemoglobin (oxygenation). I'm out of breath after a flight of stairs, but otherwise OK!

I have a new sense of empathy for elderly people, because between the low energy and very creaky joints from the hormone therapy, I "am" 90 years old sometimes. Looking forward to getting back to yoga!

Still enough energy for the basics. I'm reading "1776" and doing some needlework for my nephew-to-be's nursery.

And now it's the big countdown until next Friday when I am reunited with my beloved stem cells! My blood counts will continue the downward trend for a time after that, but will thereafter recover.

Who-hoo: Yesterday threw the whole nap thing overboard and had a wonderful escape with my new friend Mia, who is the sister-in-law of my sister-in-law's lifelong friend. Mia, who went through breast cancer treatment herself last year, treated me to lunch at the fine arts museum. It felt like a trip to the Caribbean after shuttling between clinic and our "dorm."

Who needs a nap when you're awash in Tiffany windows and fabulous western landscapes (my two favorite art forms!)?

Monday, January 26, 2009

So Far, So Good

Bouncing back from an eventful week. Spent last Tuesday through Thursday in the lead-lined room at the hospital. Except for the huge door too heavy to operate manually, it looked like a normal room. Oh, and then there was the sign:

The drama of Samarium Day was in keeping with that of the inaugural the day before. This was the huge step we've been gearing for, obsessing over, researching diligently, daily, for the past several months. This was to be the big kahuna, the linchpin of this clinical trial!

To add to the drama, there was some trouble getting my IV chest catheter to work properly, which resulted in one of the stem cell doctors storming in to assert himself with the IV technician. After all, this ultra-powerful stuff had to be administered just right. (And, we understand it's likely worth several hundred thousand dollars; since it's a trial, though, it was provided free of charge.)
Hank was more nervous than I was!

Later, Dr. Nunez, the head of nuclear medicine, wheeled in a heavy cart containing the syringe, housed in a large shielded container. The infusion took about 30 minutes, during which I did my favorite visualizations, such as healing light swishing the bad stuff away.

But my favorite visualization involves the Love Marines. They drop from a helicopter and charge in, yelling "Go, go, go!" Then instead of using typical weapons, they reach into their shirt pockets and pull out glowing pink love grenades, which they hurl (with wonderful accuracy, naturally) toward my metastases.

Going green. Nausea is turning out to be a samarium side effect, but I owe a lot to the miracle known as the Zofran Reditab. This is an antinausea medicine that dissolves on your tongue and works within minutes: "Ahhhh...!"

Now that the green feeling is gone, the only remaining side effect is a powerful magnetic force that draws me to my bed each afternoon for an hour or two of tuning out.

Friday, January 23, 2009

Quick Update

Hello, all. On Wednesday I received the megadose of samarium. All went well despite some obligatory last-minute technical drama, which was fully resolved.

The lead-lined room was not scary, though I was not allowed to put a toe out in the hall for 48 hours. The nurses were highly attentive and the room service was excellent. No massage therapists donning hazmat suits were available, unfortunately.

No side effects other than feeling green around the gills. "Flare pain" to the bones had been mentioned as a possible result, but so far, so good on that.

Will write more when I'm feeling more creative. Must recover from the nausea and from the many sleep interruptions in the hospital (such as 5 a.m. labs!).

Friday, January 16, 2009

One More Escape

It's a three-day weekend, and our last opportunity to leave town before I am immunocompromised, so our doctor has given us permission to spend a few days back home. Today I finished the last of the five radiation doses, then we hit the road.

This week we hung out with two very special women: Marcia, who is #4 in the trial, and Angela from from my "IV League" support group back home. MD Anderson is clearly a place where the "elite" meet (i.e., we're in the hard-to-enter club nobody wants to join). What would I do with out all my soul sisters in this adventure?

Tuesday's a big day for the USA, and Wednesday is a big day for little old me (the samarium megadose). Back in the 70s we used to hear on the radio Gill Scott Heron's black power poem that sums up my feelings quite well:

The revolution will not be televised, not be televised, not be televised....
The revolution will be LIVE.

Stay tuned for the blastoff!

Friday, January 9, 2009

Hello from Cancerland

Hello, all. Thank you for checking my blog.

Wednesday was tracer-dose day, in which the "standard" dose of radioactive samarium-153 was injected (the standard dose being the same that is currently given for pain palliation in some cancers).

Since then I've had four hour-long body scans to measure how well I'm releasing the radiation. Lots of time to think!
And there's nothing quite like being checked with a Geiger counter.

That was a 30-millicurie dose of samarium-153. The biggie will be around 2100 (70X the standard dose) !

I keep saying to myself:
"I do like green eggs and ham. I do like them, Sam-ari-am!"

And oh, by the way...
In the course of checking out the overall orthopedic end of things, it was discovered that the spot on one of my thoracic vertebrae is slightly impinging upon the flow of spinal cord fluid. I started to panic, but then remembered that I'm under universal orders to take courage (more on that in another posting).

Also, the lesion on my left femur is large enough that the docs don't want to trust entirely to the samarium's shorter-wavelength curative effects. (It's complicated.)
So we're 'working in' five days of traditional radiation treatments next week before the megadose.

I like this belt-and-suspenders approach! Blast the big guys with a known effective treatment, then seek and destroy the ones too small to see with imaging tools with the samarium. (There are likely numerous "micrometastases.")

It takes a (global) village...
It is extraordinarily reassuring to know that several brilliant people have put their heads together on my case. People of diverse geographical heritages, too: My main researcher/doctor is Japanese-American. The brainy young radiation oncologist, who is such a compassionate and excellent communicator, is apparently Chinese-American. The head of nuclear medicine, another expert at TLC, is from Spain. The head of the stem cell transplant department is from Germany. We have met nurses and technicians from around the Philipines, India, and other places around the world.

And then there are the people I'll likely never meet: the physicists and dosimetrists who will painstakingly analyze my bone images to determine how to direct the external-beam radiation and calculate exactly how much samarium they will end up giving me.

There's a reason this place is such a medical mecca.

There: I've broken my promise not to go on and on! Oy!
Thanks for reading.


Thursday, January 1, 2009

And we're off: We head back to Houston after Christmas at home.

Happy New Year! And to fellow travelers along the BC road:

Have a benign '09, as my buddies back home say.

December 31: Another marathon MDA day, the highlight of which was the exchange of the "big, honking" chest catheter for a smaller, friendlier version. However, it decided to detour into the wrong vein: do-over! Not at all fun, but thankfully at eye level there was a beautiful photograph of palm trees along a beach. It reminded me EXACTLY of several serene mornings during Hank's and my long-ago trip to the Caribbean island of Nevis. I had brought along my oil paints and did a landscape that hangs in my bedroom today. This is among my happiest memories. I could feel the breeze and sense the quiet of those mornings.
Below: A do-over? We are NOT amused!