Saturday, September 29, 2012

Update from Doc

We saw the doc on September 19 to view the scan results together.  He said he was very pleased and that my response to chemo was on the very good end of the spectrum.  He estimated about a 90% regression rate.  That's an A in my book, so I'll take it!

Apparently there were two options for maintenance going forward.

1) Continue with chemo at a maintenance level, maybe once/month.  Good choice because I had responded so well and hadn't had awful side effects.

2) Begin hormonal therapy at a maintenance level.  This would include new drugs I hadn't been on before, but these provide a better survival rate than maintenance chemo.

We decided on hormonal therapy because he is a little concerned that chemo may have damaged my bone marrow a bit and he doesn't want to risk more possible damage.  Bone marrow is pretty important since it regenerates your blood cells!!

The hormonal therapy will include two parts, maybe three.  The first is an estrogen-blocking drug, stronger than the oral one I was on for the past three years.  This one is given as two injections in the hip, and they are NOT pleasant!  I got the first round that day and will get it every 2-4 weeks after that for quite some time. The other part will be an oral med we will discuss at my next appt.  The possible third part would be added if I get into a clinical trial he'd like me to be part of in the future.

I'll update more after my next appt!  Thanks for all your questions, hugs and notes!

Love, Jill

Why are we eating vegan?

Why did we switch to a vegan diet?  I get asked this a lot.  My basic answer is typically something like "There is a lot of research that shows that consuming animal products, not just meat but dairy and eggs, is linked to higher levels of chronic diseases, such as cancer."

Want more details?

This is an awesome series of video clips summarizing some research on whether this is actually true.  What I like about the videos at is that they include enough science for the nerds, but they use charts and enough short words for all of us to get the basic idea.  I'm posting a few here, in order, to view.  Each video is only about 3-4 minutes.

This one is about a study where women changed to a vegan diet for just 14 days to see how it impacted their blood's ability to fight breast cancer.

And more research about the underlying mechanism behind this protection:

One more about IGF-1 levels, which is a growth hormone we all have:

By no means do I think that we should all believe this and not look into the details of the research studies for ourselves.  Check out the comments at the bottom of each video page to see what I mean.  However, I think this is an amazing site to help with seeing the big picture of some of this research.

Monday, September 24, 2012

My Famous Doc

My mom called today saying she saw my doc on NBC, so I thought I'd brag a bit about him.  Here is our favorite Brit, Dr. Matthew Ellis, in all his awesome-researcher glory!

4 Types of Breast Cancer

Monday, September 10, 2012

Upcoming Dancing!

As some of you know, I had my end-of-six-months-of-chemo CT scans on Friday and was supposed to meet with my doc on Wednesday of this week to find out results and to discuss his suggestions for next steps.

Today his nurse called and said we needed to push my appointment back a week because the doc would be out of town this Wednesday.  My reaction:  "Karen, you guys are just trying to stress me out, aren't you?  You want me to wait another 10 days for results??" Luckily, her answer was No.  She had my results right there and shared the brief summary:

Things are looking good!
Better than three months ago.
Liver lesions are smaller and fewer.
Bone lesions are stable with healing scars (a good thing).

She's faxing me full results tomorrow so I can see details for myself, but for now, it sounds like some celebrational dancing will be in order!!  If anyone cares to dance with us, you are all invited!!  I promise, dancing video(s) will be posted soon.

My appt for discussion with the doc is rescheduled for the September 19th.  I might be done dancing by then.

Tuesday, September 4, 2012

My Turn at Fame

During our retreat last week with Little Pink Houses of Hope, I did a phone interview with a reporter who was doing a story on the organization and wanted to talk with one of the participants.  The article was posted this weekend.  :)  So yes, I am famous via the Bethany Beach Wave!

BETHANY BEACH -- For the last six months, Jill Lustberg has been juicing.
No, not the juicing associated with Barry Bonds' Arnold Schwarzenegger-esque transformation. Lustberg's juicing comes in the form of a shake, equal parts kale, cucumber, green apple and lime.
She started juicing when she was diagnosed with breast cancer for the second time; four years prior, she was told her cancer was in remission.
Ironically, now the 41-year-old from St. Louis, Mo., is smiling wider than ever.
In the midst of her treatment, Lustberg balances her work at Washington University with raising a 6-year-old daughter and racing to medical appointments. Through it all, her husband, Jason, is by her side.
The pressures of work and treatment leave little time for her family to enjoy each other's company. Instead, their attention is focused on chemotherapy schedules and making green cocktails that would never be mistaken for appletinis.
A vacation wasn't just a hope, but a need -- not only for Lustberg but for her daughter, Rory, and Jason.
"As a mom, it's nearly impossible to put your mind at rest because you're always thinking about kids, school, work, cleaning the house," Lustberg said. "To find the time to put yourself first and take care of your health is hard to do. Part of your health is your connection to your family. To relax, not think about laundry and the to-do list of everyday life is a true gift."
While undergoing treatment, Lustberg received an email from a fellow cancer patient about a week-long trip to Bethany Beach. It was a retreat hosted by Little Pink Houses of Hope, a nonprofit organization based out of Burlington, N.C.
The Lustbergs and six other families traveled to Bethany to distract them from the daily grind associated with cancer. Instead, their concerns were how sore their arms would be after a day of kayaking, do I need a manicure, pedicure or both, and who will get to brag for the remainder of the trip about getting the lowest score at miniature golf.
LPHOH founder Jeanine Patten-Coble summed up the week's motto as "live stronger, laugh harder and love deeper."
"This week is designed to let them have fun," she said. "Just because you have this diagnosis doesn't mean your life has to take this big stop."
Patten-Coble is also a cancer survivor. Diagnosed with breast cancer in 2009, she felt obligated to give back to those who are fighting a similar battle.
During her year and a half of chemotherapy and radiation treatments, Patten-Coble's main concern centered around the well-being of her husband and son. They were her rocks, and for every moment she didn't think she could persevere, she could not bear to know what was running through the minds of her loved ones.
For the Lustbergs, chores like grocery shopping and cooking have been shifted to Jason's plate.
A trip to the beach is an unparalleled remedy. For seven days, sweeping the floors and cooking dinner were forgotten.
"There's still a separation for what it's like for the family and for me," Lustberg said. "You come here and disconnect from all of life's stresses with your family -- it's great. It helps to get away from your daily routine."
Lustberg's greatest concern is not the state of her recovery, but that her daughter isn't overwhelmed by her condition.
Every day brings uncertainty to Jill and Jason. Explaining the ins and outs of cancer to a 6-year-old and hoping they comprehend is as easy as teaching calculus to the family pet.
Lustberg struggles with how much information should be imparted onto Rory; what does she need to know, how much stress is being unfairly placed onto her and why does mommy continue to down these strange green drinks?
"You just don't ever feel like you know the right answers," Lustberg said.
Rory had never been to the beach and she'd never ridden a horse. Both of those activities were checked off her to-do list last week.
Lustberg has a theory. Treat every day as a good day. Focus solely on the now. Then, she said, there's nothing not to be happy about.
Her positive attitude sets the tone for her family. Jason and Rory's lives revolve around Jill's health and happiness, and vice versa.
Lustberg recently completed her chemotherapy treatment. Maintenance will be the goal from here on out, and she'll do so with memories of the beach trip in her back pocket and optimism at every hurdle.
"To relax with my husband and kid on our own would be impossible," she said. "I don't know how you do it any other way."