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,



  1. Still following; still praying; still seeing the beauty and celebrating the goodness and grieving each setback with you.

  2. I've got so many candles burning for you that the fire department may soon show up. The flames burning in my heart and soul for you are just as strong. I send you lots of love, warmth and support. Thank you for sharing this journey with your many friends. And quoting a wise physician, "there are still plenty of reasons to hope."


  3. Sending much love your way...
    - Lara

  4. I like your silver linings. Not so shabby. And I'm glad you have a great new doctor. I hope he can give you guidance as you wade through all the treatments and trials again. Can't wait to see all of you this summer. Perhaps you just need to hold my baby for a few months. I hear that's the cure for a lot of things.
    Much love,

  5. I keep you in my heart and prayers, always.
    Much love,

  6. I'm such a moron with this! I just realized I posted my comment in the wrong place! Anyway, I want to repeat how much I felt the heartbreak of your recurrence! I'm so sorry! I'm impressed with your picking yourself up and moving forward with the new doc and treatments. Loved the pics of you with Hank and your trial buddy! Glad to see you having fun.

    I too learned of a recurrence yesterday so am now destined for more exploration of a chemo that works. Hope we find a good one first try. I've been enjoying the last six months being off the infusions and having clear scans. I just returned from a very fun 3 weeks in italy with my sweetheart for part of the time and then a very dear girlfriend from way back in the past. Have had amazing travel experiences, quality time with loved ones and am grateful. But, damn, a cure would be especially nice!! Hopefully, we will realize such a miracle one of these days. Until then, stay strong and I hope to get to see you in Austin or Houston sometime.
    Vickie Lee