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!