Monday, December 17, 2012

I'm SO special it's scary

There have been a lot of things on my mind to write about lately, but there has also been a lot going on with the holidays and doctor appointments so I haven't had made as much time to write as I'd like.  Hopefully I will come back and fill in some of the gaps soon, but for now, I'm putting a simple update out here.

(First, I want to set the scene, as it's quite peaceful right now.  I'm sitting at our dining room table, facing the Christmas tree.  Lights are dimly lit here and there, and my cup of tea is hot.  Rory is asleep, Jason is in New York, and Maybe is freshly-bathed and laying next to me in her bed.  Inhale.  Exhale. Enjoy.)

We've been waiting for about six weeks to hear whether I was going to be able to get into a clinical trial.  I've been taking one anti-estrogen injection since late August (when chemo ended), but that injection just isn't enough to keep this bad boy in it's box, as I like to say.  There have been tests and hurdles, and as of last week, I seem to have passed them!

The clinical trial I'm now in basically includes taking three anti-estrogen meds.  The first is the injection I'm already getting monthly, which will continue.  This is a drug that many women have been taking for years to ward off a recurrence.  The second med is an oral anti-estrogen I started taking on Wednesday and will continue to take daily.  Many women have been taking these first two meds together as part of a clinical trial, as well for about 12-18 months.   The third med is an oral anti-estrogen that I will start the day after Christmas and will take once/week.  This one is not yet FDA approved, so can only be given to a small number of patients.  Really small.  Meaning, I am Patient #4 in the world to be taking this drug combination.  Yes, I'm THAT special, and I'm not sure I like it.

The good news is plentiful:
1 - When you are on a clinical trial, you are under constant care by great docs!
2 - The side effects of two of the drugs mimic the symptoms of menopause:  hot flashes, crazy mood swings (sorry Jas & Ro!), and stiff joints.  I may feel about 10 years older than I am, but overall, those are really tolerable side effects!
3 - The worst side effect of the third drug is a rash, which they can control with a mild steroid.

This week is a bit rough in the transition of meds for the clinical trial, but hopefully in about a week I will feel much more like myself.  This transition (including a transition in "happy meds" that help me deal with the hormonal mood swings) is making me a little volatile this week, but should be better soon.  In the meantime, it has  made my brain peek into the dark side of things here and there which has been a little difficult and scary. I don't feel quite so invincible without my meds, I guess.

So, my wish this Christmas is for peace.  Not world peace like Miss America.  Just peace inside my brain and my body.  

Happy and Healthy Holidays!!!

Tuesday, October 30, 2012

The Third Option

We all know people who have kicked cancer's butt.  And we all know (sadly) people who have died.  But there is a little-talked-about third option - those of us who are living WITH cancer.  There are many of us.  We have cancer.  We are keeping an eye on it.  We are taking medicine. We are watching research headlines and publications for news.  We are seeing our doctors. We are updating our family and friends about how we are doing.  We organize our medical records and keep meticulous notes.

And yes, we are living our lives.

Like everyone else, we volunteer.  We work.  We try to eat well and exercise.  We may even try to manage our stress.  We hang out with our friends.  We go on vacation.  We do laundry and wish we could keep our house cleaner than we do.  We read stories to our kids.  We make plans for a year from now.  We send cards for birthdays.  We rake leaves, and always have a To Do list.  We check Facebook more than we care to admit.  We are in line at Starbucks.  We go to meetings.  We go to the grocery store.

You'd be surprised how many of us there are out there.  Today's medicine is allowing more and more of us to figure out how to fit cancer into our lives for the long term.  In the news, you hear about the people who fit into the first two categories, but not about the third.  We're out there.

And yes, we're doing fine.

Tuesday, October 9, 2012

Is Coffee Bad or Good for You?

Take a gander at both sides of the argument and feel free to weigh in and leave a comment here on the blog!

Huffington Post Debate On Coffee

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."

Friday, August 31, 2012

Sunny horse back riding

It's 95 degrees but Rory loved riding Champ! She got to feed him ginger snaps at the end.


Wednesday, August 29, 2012

My Famous Family

From a local paper here today!

Greatest beach quote EVER

Rory's first long stretch on the beach was full of fun, but also full of the realities of being on the beach... Salt water in her mouth, a wave that knocked her on her ass, and sand in her "naughty bits".

At the end of our time on the beach the first day, she told daddy she had a lot of sand in the, um... Lets say... Lowest point of gravity in her swimsuit.  Rory, laughing as she walked awkwardly: "It feels like a bean bag, Daddy!"

We went home, took showers, emptied her swimsuit of sand, and took naps.  That afternoon, I said, "Come on, Ro! There's enough time to get to the beach before dinner!" and my six-year-old responded in a snarky 14-year-old tone: "Yeah, enough time to get a bean bag in my vagina!"

When I shared that one with the staff of Little Pink at dinner, they requested she get a Twitter account.

So tempted to get in the car!

Kidding, of course!

Monday, August 27, 2012

Ocean Pit Stop

We arrived early so stopped randomly in Ocean City and took Rory to see the ocean, since we were only two blocks away.  It was her first time in the ocean and, of course, she was thrilled.  We told her she could go in up to her knees, but you can tell by how wet she is that that limitation really doesn't carry much weight with a six-year-old near the ocean!

So excited for the trip

Humbled and Overwhelmed

This week we are on a family retreat of sorts, given as a gift, and I must say, it is humbling. We arrived yesterday and met two amazing women, Jeanine (the organization founder) and her sister, Kristie.  Kristie showed us to our house, which they filled with breakfast food and snacks from a shopping list we had to send her.  And she said, "So if our run out of almond milk, you call me." Me: "Great, you can tell us where to get more.". Kristie: "no, you call me and I go GET you more.  That's my job this week.". Wow, this is slightly uncomfortable. Not sure I can get used to this.

Last night we met the other families, and though there isn't anyone Rory's age, everyone is very nice and I have no doubt she will be entertained.  The activities of the week include horseback riding, stand up paddle boarding, crafts, kayaking, game night, yoga, necklace making, facials, and maybe sailing.

I will post some photos when I can, but if you want to see what we are doing, the organization will post photos every day on their blog at

Love, Jill

Friday, August 24, 2012

The Power of an Awesome Husband

It's not often I write about how Jason is doing through all this cancer #!$% except to show videos of how he celebrates with me and entertains me during treatments.  Yesterday, though, he played a huge part in framing my attitude and I wanted to share it.

After we left the doctor's office and cooked dinner, I mentioned that I wasn't sure if we should be doing any kind of celebration of the news from the doc.  I felt a bit in limbo... yes, I didn't have any more chemo scheduled, but we didn't know for certain I was done, and we didn't know what treatment was next.  My scans weren't scheduled for three weeks to give us any facts.  And let's be honest, I have metastatic cancer ... historical data shows there's a good chance that even if this chemo knocked it out completely, it will be back.  So, I wasn't really sure whether we should be marking the occasion somehow.

Jason's take on the situation was influenced directly by the book "The Power of Now" by Eckhart Tolle.  We've both read it in whole or part.  It's a tiny book that packs a huge punch in explaining the value of focusing on RIGHT NOW rather than holding on to emotions from the past or possible futures.  This has been valuable for us both, but especially for Jason when the Jewish (re: worrying) side of his nature takes over.  I can't recommend the book enough to anyone, especially those who have a tendency to worry (cough, cough, Mom, cough, cough).

That's why his response surprised me so much.  It sounded something like this (I can't write that phrase without hearing the Charlie Daniels Band bust out a mean fiddle, but alas, there was no fiddle at our dinner table):

'Well, my thought is that looking at RIGHT NOW, we should celebrate.  Today, you feel great, the doctor says you're done for now with chemo.  You've completed six months of treatment and so far the response has looked good.  They told you today that your blood work looks good, your tumor markers continue to go down, and your liver enzymes are looking pretty much normal.  We don't have any idea what's going on three weeks from now, so why should that stop us from celebrating the good news today??'

The only thing he could have added to make it even better was "and they say now that chocolate cake and sugar are good for you!".  He also then reminded me that while at treatment I had literally six or seven people stop me to tell me how much they liked my hair, so I also had to feel like I was looking good.  :)

I love this man.  Truly.  He is my rock, my humor, my cook, my reality, and my heart.  Truly.  And THAT is the Power of an Awesome Husband.

Wednesday, August 22, 2012

We are on a BREAK

Coming to you live from Pod 2 today, hopefully for the LAST time!  This morning the doc said my numbers look good for treatment today and seem to show that things keep getting better.

We've scheduled a CT scan for two weeks from now (to let today's chemo drugs do their magic before we scan), and we meet with our favorite Brit again in three weeks (yes, my doc is British, in case I've not mentioned that before).  If my CT scans show that the tumors are further reduced, we will switch to maintenance mode by starting some new oral medications whose job it will be to keep the tumors in check, not growing or spreading.  I can live quite happily and healthily like that, since the only way I feel bad right now is when I'm tired, and the tiredness is from chemo, not from cancer!

So, for now, we are ON A BREAK.  I won't see the doc again for three weeks, so until then we just get to relax and be well.  You should do the same.

And, for those of you whose brains have already gone there, here you go...

Tuesday, August 21, 2012

Winner, winner, tempeh dinner

Awesome Tempeh BBQ sandwiches with avocado. 

BBQ Tempeh Sandwich courtesy of Your Vegan Mom
1 package tempeh, sliced thin (about 1/8 inch)
1/2 c. barbecue sauce (Use a good one, you're really going to taste it.)
1/2 c. water
about 1/2 tsp. fresh rosemary, minced
3 good rolls (Yes, I know, in the photo I used toasted sourdough and that will do in a pinch.)
1 large carrot, shredded
1 avocado, mashed (Again with the photo.  As you can see, those slices are slipping right off the sandwich. But mashed avocado, on the other hand, makes a delicious sandwich glue.)
Vegenaise (I love vegenaise and paranthetical notes.)
Heat the oven to 350.  Whisk the barbecue sauce, water, and rosemary together.  Spread the tempeh out in a 9 x 9 inch baking pan.  Cover with sauce.  Cover pan with aluminum foil and bake for about 30 minutes.  Remove the cover and continue baking for about 15 minutes until the sauce is mostly absorbed and the tempeh has developed some chewy edges.  Slather those buns with vegenaise, slap on your tempeh, top with avocado and shredded carrot, and take a moment to enjoy.
This recipe makes enough for three sandwiches which is an odd (hee hee, math humor, did I mention that I taught fourth grade?) number for recipe results, but if there's two of you, you'll have enough left over for the next day's lunch to help alleviate your guilt with a sandwich for that person that's working so, so hard. 

Monday, August 20, 2012

Veganism as a way to save the earth

I thought this was fascinating because I had never thought about how the HUGE industry of producing meat and dairy products could be impacting the EARTH.  I just knew it was healthy for me to not eat them.

Going vegan is a win-win!!

(Click on the image to make it bigger so you can read it all.)If you still can't see it, click here.

Sunday, August 19, 2012

No More Pod Parties?

This Wednesday when I go for treatment, there may be big news.  This just might be my LAST chemo treatment!!  My doc has been out of the country the last two visits, but according to his staff, this Wednesday is the last treatment of my six months.  When I asked if it was the last treatment FOR SURE, they said I had to talk to the doc.  It's likely that when I'm there on Wednesday he will order a CT scan of my torso again to see how we are doing at six months before making a final call on what is next.  I'll be sure to post again on Wednesday to let everyone know what we know.

If the scan doesn't happen for a few days, and we don't get to talk to him for a while after that, it could be up to another couple of weeks before we know what is next.  And, to answer the next question, yes there will definitely be something next.  There is still probably some surgery coming up (no need to keep those ovaries in there) and there will definitely be another medication to try to keep everything calm and at bay.

In the meantime, I will continue my "Party on 7" mentality (the chemo pods are on 7th floor of Siteman) for Wednesday morning!

Tuesday, August 7, 2012

Sugar Kills!

I've heard a few people talking about seeing this Dr. Sanjay Gupta piece on "60 Minutes" recently (tick tick tick tick tick tick), so thought I'd share it.

The phrase "Sugar Kills!" sounds extreme, but it's time people realize that it's TRUE.  As far as cancer is concerned, cancer is, in it's most basic form, an inflammation.  And SUGAR is fuel for inflammations.

Research shows that many, many people have cancer cells in their body, but not everyone gets cancer.  Sometimes that one little cancer cell just sits there and doesn't proliferate.  It doesn't gather up its energy and start making a gazillion more cancer cells to throw an evil party with in your body.  There are multiple reasons why that might happen.  But research is clear that one way to encourage that little bad boy to make more friends and start the evil is to give it plenty of sugar to eat.

Please take a minute to read this article.  There's also a link in it to a 90 minute video that I encourage you to watch.  Then pick up whatever food you are about to put in your mouth and read the label.

Oh, and one more thing... SUGAR is SUGAR, no matter if it's natural (fruit) or not.  So pick up a veggie instead of another piece of fruit.

(Does anybody else think they could have chosen a different name for this link???  Tee hee.)

Monday, August 6, 2012

Little Pink Houses ... for the Lustbergs!

WE ARE GOING ON VACATION!  There is an awesome organization called Little Pink Houses of Hope whose mission is to provide time for breast cancer patients to unwind, step away from the hecticness of treatment, work, etc, and just relax and spend time with their family.  We applied for this opportunity and recently found out that we are accepted!

Bethany Beach, here we come!

What does that mean??  It means a free week in a beach house for the Lustberg trio in Bethany Beach, Delaware!!!  We just have to pay to get there.  They take care of food, activities, and lodging.  Isn't that amazing?? We are so excited.  There will be six families at Bethany Beach the week we are there.  The moms are all my age (38-40) and between us there are 10 kids, mostly 6-9 years old.  They fill the house with snacks and breakfast foods that we request, then plan activities throughout the week like jewelry making, surf lessons, etc, all paid for!  We can participate in nothing or everything.  It's our trip to relax the way we want to relax.

Rory has been to the beach before once, but it was February, so too cold to get in.  I can't wait to see her in the ocean!

Shifting into a Lower Gear

A while back I read a book (well, most of a book, before it was due back to the library) called The Journey Through Cancer.  In this book, I found a new way to view my body.  The author laid out two options:

1)  Think of your body like a machine.  It runs and runs and when something breaks, you fix it and get it running again.  Go, go, go!

2)  Think of your body like a garden.  It needs light, energy, oxygen, and nutrients.  It takes a little nurturing every day.  When you find something wrong (a weed), you can catch it early because you are tending the garden every day.

I realized that I have been treating my body as a machine for as long as I can remember.  So many of us do!  Right now, though, I have the opportunity and the incentive to try the other tactic.  Through the beauty of FMLA, I have the option to work less right now to try to take care of my body.

Managing work and family is tough enough when both parents work full-time.  Add in managing cancer care and, well, let's just say it's MORE.  I don't have the option to cut down the time I spend being a cancer patient.  I don't want to spend less time with my family.  But work is one place I could slow down.

So, as of the beginning of July, I cut down my hours.  I now work 3 days/week.  Luckily, my boss and teammates were incredibly supportive (When I told my boss I felt the need to reduce my stress by cutting two days/week out of my work schedule, her first words were "Are two days a week enough to reduce your stress?"  Awesome, huh?).

I don't know how long I'll stay on this schedule, but for now it's helping. Every other week I'm in treatment and the two days I'm off are Treatment Day and My Tired Day.  But the opposite week, when I'm feeling good and I'm off, I get to do yoga, go for walks, and drink green juice to my heart's content.  It's lovely.  

My chemo is scheduled to end in a few weeks and then I'll see what the doc says is next.  Things with my schedule may change and that's just the way our world rolls for right now.


Monday, July 23, 2012

Enjoy rich food, or live long life?

I have a lot of things to blog about and hopefully with this being a treatment week, I will spend some useful time on my butt and blog.  But in the meantime, I found this article interesting, as I think we've all had these debates in our head, if not with our friends and families.

Have you ever heard someone say, "I'd rather enjoy my food and die than eat healthfully and live long"?

Saturday, June 30, 2012

The Things I Wish I Were Told...

Good article. I would recommend it for anyone newly-diagnosed, along with their family and friends.

Thursday, June 21, 2012

An Ode to Worker Bees (you know who you are!)

Your offices spill over with pink
I wonder what strangers may think
Stingers of black

We will wear on our back
While we walk and sweat 'til we stink!

You've written emails to friends,
Planned t-shirt sizes to no end!
Dozens of errands you've run
To ensure all our fun
All while writing reports for year end!

I'm attempting to show you my praise
And tell others how much you amaze
But my rhyming skills suck
And I'm somewhat awestruck
So I thank you, my friends, ALWAYS.

See you tomorrow!!

Tuesday, June 19, 2012

Research on Stress and Breast Cancer

Just one of the reasons we are so thankful to everyone who helps us out in some way.  Meals, cards, play dates, Rory pickups, taking on a work project, etc.  THANK YOU ALL for helping me keep my stress level in check!

Stress Management for Breast Cancer Patients May Affect Disease Course

ScienceDaily (Mar. 21, 2012) — A team of researchers led by Michael H. Antoni, director of the University of Miami's Center for Psycho-Oncology Research, has shown that a stress management program tailored to women with breast cancer can alter tumor-promoting processes at the molecular level. The new study, recently published in the journal Biological Psychiatry, is one of the first to link psychological intervention with genetic expression in cancer patients.

Full article here.

Sunday, June 17, 2012

Crappy Chemo Weekend

Chemo is a tricky thing.  Every time I think I have the patterns of how I will feel down, it decides to throw something at me, just to keep me on my toes.  This weekend I have been EXHAUSTED and achy.  I think the exhaustion is from the chemo and the achy is from the Neulasta shot.  I got up on Saturday morning and put a bagel in the toaster for both Rory and me.  I ate three bites before I was so exhausted I couldn't go on and needed to lay down.  My hips hurt (expected from the Neulasta) and my muscles have felt like I worked out too hard a couple days ago, though I haven't exercised in a couple weeks. Oh yeah, and I've had a very slight fever here and there (including right now as I type this).

Ibuprofen has helped but I feel guilty being a lump on the couch most of the weekend.  Ibuprofen doesn't help that.  (By the way, if anyone is aware of anything available OTC that can take away guilt, please let me know!  I would share it with my hubby.)

Jason and I are planning a getaway weekend for the two of us in a couple weeks, but are now looking to shift dates so that if the next chemo treatment hits me the same way this one does, I won't be laying in a B&B feeling this crappy.

Our friend and neighbor, Gloria, told me this morning, "Well this is what chemo is SUPPOSED to feel like, so relax!", which did make me feel very fortunate for how I've felt over the last three months of chemo.

OK, I'm off for a quick nap before Jason and Rory get home!  Big hugs everyone!

Wednesday, June 13, 2012

The Juggler

Nobody, and I mean NOBODY has better entertainment in Pod 4 than me!

You can make the video full screen by clicking the icon in the lower right corner of the video.

Wednesday, June 6, 2012

Mid-term Report Card

For your first glimpse of how today's mid-term chemo report card turned out today, check out the 7 second video below:

Gotta love that still shot!

All good news today!  When I was diagnosed three months ago, the cancer was in three areas:  my liver, my spine, and my omentum (yes, that's a real organ - google it!).  As of today, there is no sign of cancer in my omentum!  And the tumors in my spine and liver (there were numerous ones in each) have decreased both in size and number.  Both my spine and liver have spots of scar tissue from small tumors that have now healed.  And all my other organs are still healthy and cancer-free.  YIPPEE!

What does this mean?  We still have 3 more months of chemo, then we answer that question.  But for now, it means we DANCE!!!

Love you all!

Tuesday, June 5, 2012

Test Day Distraction

Today is the halfway mark for my planned six months of chemo, so it's CT Scan Party Day!  Tomorrow we talk with the doc about results.  A week ago, I was feeling very confident heading into the test, thinking "I'll show them!  They'll be AMAZED at how well I'm kicking this!"  Imagine the scene from A Christmas Story when Ralphie imagines the reaction his teacher will have to his theme about wanting a BB Gun.

This last few days, I've not felt as confident since I've not been feeling 100% with the mono (though I've felt remarkably good for dealing with cancer and mono at the same time!).  These are times I question every gurgle and twinge in my body, imagining it's things getting worse.  Then (and here I'm going to let you in more than you probably want on the crazy of my brain) I think to myself "What are you DOING??  Thoughts can create reality!  Stop it!  oh wait... how long have I been thinking this in the back of my mind before it made it to the front?  What if I've been-" and that's when I get distracted by something else, in typical Jill fashion, like some classic 80s song on the radio.

So, for today, here is my theme song...  :)

Saturday, June 2, 2012


Wednesday and Thursday I had two rough nights of sleep for no particular reason.  By Friday morning, I was exhausted.  I went to work for two hours before calling it a day and heading home to nap.  As the afternoon went on I felt worse and by dinner a fever kicked in.  And of course, in Chemo Land, a fever means a trip to the ER to get checked out.

They did tons of blood tests and the first piece of good news was that my white blood cells were way up! At first all blood tests came back looking really good.  So tell me...

What 40 year old married woman gets MONO??

Yep, mono.  At first I wondered how in the heck I could have gotten mono, but then I have to remember that with all my time in doctor's offices, I spend more time than the average bear in places where there are some very sick people.  And did I mention that I like to lick them?  Who gets mono at 40?!

So, all plans this weekend are canceled and I plan to lay on the couch most of the time.  You just have to ride out mono.  Fatigue can last 4-7 weeks, but I have been feeling tired a week or two already, which I had been chalking up to Hectic Cancer Life and Hectic Real Life.  Looks like my body is demanding more rest than I was already giving it.

Anybody have a good book to recommend??

Thursday, May 31, 2012

WBC count :(

Yesterday my white blood cell count was still at the same place as a week ago.  The doc didn't want me to go another week without treatment (and I DEFINITELY didn't want to go another week without treatment), so they gave me a 75% dose rather than 100%.  In about an hour I go get my shot to stimulate my bone marrow to make more red blood cells, white blood cells and platelets.

Yep - that's a white blood cell hangin' out
in a posse of red blood cells.
Next Tues is my halfway point in my six months of planned chemo.  To celebrate, I get to have a CT scan to check out the status of my junk.  Wait... that doesn't sound right.  Anyway, Tues is my scan and Wed we meet with the doc for results.  And on Friday, my big brother and his family come to town and we get to have FUN!!

More update soon!

Thursday, May 24, 2012

Who peed in my cheerios?

Did you ever hear that phrase when you have a dark look on your face... "Who peed in your cheerios??"

Well, that was the look on my face yesterday when I went from treatment and was DENIED.  Before each treatment they do blood work to make sure you are healthy enough for another round.  I feel fine, but apparently my white blood cell levels  were too low to get treatment.  My treatment will be postponed one week to give the numbers time to recover.  After my treatment next week, they will give me a shot of Neulasta, which helps to rebound everything produced in my blood system by my bone marrow.  Four years ago I received a shot of Neulasta after every treatment.  In fact, for a little entertainment about Jason having to give me the shot four years ago, check out this old post.

So, now my every-other-week treatment has changed to the opposite weeks.  That means that this morning I am rescheduling everything in our world back a week basically, and hoping that next week my cheerios are back to normal.

Friday, May 11, 2012

Thursday, May 10, 2012

Walk with the Lusty Bees - June 23 in STL

A note from my friend, Tara.  I hope you can join us June 23.  Check out the link from Tara for the story behind the team name.  You can't even IMAGINE the costumes we're planning!!  (oh, if only that wouldn't BEE too hot to wear!)

Hello everyone:

It’s been a while since I wrote many of you about Race for the Cure on June 23 and our team in honor of Jill. Thank you for your patience! Our team “Lusty Bees” is now online and you can register/participate by visiting the site:

The link to register can be found at the bottom of the web page “Join Team” and from there it will take you to an online form to fill out.  The deadline for online registrations is 8:00 am on JUNE 4. 

Thanks everyone for your support—even if you can’t join us on race day—you can still participate so let me know if you’re interested but can’t be present that morning. And a HUGE thank you to Steffani for providing the content for our team page!!

Take care,

Updates to the Blog

I spent some time last week making some updates to the blog and wanted to point them out.

Following the blog:  For those of you who want to know how to follow the blog, there is now a box in the top right corner to help you.  Add your email address and you should receive an email every time I post a new blog entry.  Easy Peasy.

New links: Links have been added to the right for some websites I use a lot.  More will be posted.  There will also soon be a section of links to books and cookbooks.

If you have trouble with any of the enhancements, or have ideas for other things I should include, please share!  Thanks.

Wednesday, May 9, 2012

Superhero, Super Day

A note on videos... if you click on "YouTube" under the video screen you can watch the video on YouTube, which gives you a bigger screen.

It's been a super day.  At treatment today we found out that my response to the treatment has been great!  My liver enzymes are all basically back to normal and the doctor just couldn't say enough how stunning my response to the chemo has been.  In fact, my response has been so good that he wants us to have a conversation with another doctor about a possible different type of chemo treatment that is stronger and might give me an even better response.  We have no idea if I'm a candidate for this other treatment but are willing to go talk with the doc.  Even if I'm not a candidate, we are really happy that my doctor is thinking outside the box looking for solutions.

Laughter is always the best medicine, so please enjoy the outtakes below!  As you can tell, we certainly had fun with them.

Big hugs and love to everyone,


Tuesday, May 8, 2012

Thursday, April 26, 2012

Fork Warning

I love my husband. I really do.

He has been so diligent about researching nutrition and cancer. He searches vegan cooking blogs. He buys cookbooks. He does all of the cooking (and dishes!) in our home. He shops for healthy, organic foods. 

Sometimes, though, he goes too far. He gets a little pushy about eating all the broccoli on my plate, which my mom and dad can tell you has never been my strong suit. (I can't imagine how many glasses of milk I ruined as a kid by spitting barely-chewed broccoli into the glass who trying to chase it down.) He offers me a cup of green tea just a few too many times after I say "No thanks." He reminds me to drink enough water, and suggests I eat just a few more edamame because they are so good for me.

When I've had enough and he's pushing too hard, the new code word is "fork". Why? Because at dinner recently I threatened to stab his hand with my fork if he pointed at one more thing on my plate that he thought I should eat.

 I love my husband. I really do.

Wednesday, April 25, 2012

And the good news just keeps coming!

I'm coming to you live from Siteman's today, from Pod 5, or as I call it "The Party Pod"! Jason is off getting lunch for both of us and I'm just waiting for the party to begin. We saw the doc today already and the good, no GREAT news, is that my liver numbers are looking good! They check 3 liver enzymes each time I come. One is completely back to normal and the other two are just slightly above normal. We did a little dance when we heard that. I'm off to have some lunch but promise some more posts later today since I will still be here for a couple of hours.

Thursday, April 19, 2012

Help Me Get Creative!

For those of you in STL, you know what a HUGE deal the Komen Race for the Cure is!  The last couple of years there have been something like 60,000-70,000 participants!  That is one huge sea of pink!  

And this year, there will be a team with my name on it.  Well, not literally.  And that is where I need your help!

Please post comments below with your idea for a team name!  I don't really want my personal name in the team name, unless you use the word "Lusty".  

I do, however, have the t-shirt logo in my head already.  Ready for it?  
"This time, we're SERIOUS!"

Mark your calendars for June 23 and come join us!  More info will come soon about the team name and how to register to be on our team.  

Now, get creative, people!  We need a name!

Wednesday, April 4, 2012

Archie, My New Mouse

Did I mention that I have my very own mouse??  Those of you who have a bit of a science geek side to your personality (like me) will love this!

As part of the liver biopsy process, I allowed them to take one extra sample for research. They are going to take the tiny piece of cancerous tissue from my liver, and put it in a mouse!  They hope he will then get cancer just like mine.  If he does, they will then try different therapies on him to see what works.  Usually this benefits people in the future, not the actual patient the sample came from, but sometimes something works so well in the mouse that they come right back to talk about using it on the patient.

So, to encourage the mouse to do me some good, we've named him Archie.  Just seemed like a good mouse name.  If I hear any updates about how Archie is doing, I will let you know.  Isn't science cool??

Friday, March 30, 2012

Do not adjust your monitor...

There's nothing wrong with the color. This is really what I'm having with my lunch. The straw definitely helps get it down! Thanks, Jas!

Thursday, March 29, 2012

Feeling the Love!

I just wanted to put out a quick thank you to everyone for everything you've done.  The calls, the cards, the gifts from complete strangers!  Thank you to all of you who have put us on prayer lists - I can't tell you how much that moves me.  I've received flowers from Hawaii and meals from neighbors.  Classmates of Rory's have made plans to pick her up from school on days we can't.  Fellow health-nuts have sent links to recipes and websites.  And it is all so truly appreciated.  We are overwhelmed by your love and support.  THANK YOU!

Treatment Two

Yesterday I had my second chemo treatment and all is good and well.  My liver enzymes, which have just been climbing and climbing for weeks, seem to have stabilized somewhat after one treatment, which is very good.  My other labs all came back looking very very good for someone in chemo.  I felt completely normal the rest of the day and am feeling good so far today.  Two weeks ago I was exhausted for a few days, so I don't know if that will happen this time or not.

Here's what treatment looks like:
10:15am     Labs.  Have blood drawn to be sure I'm healthy enough for treatment.

11:00am     Meet with my doc.  They review how I'm feeling and my lab results.

12:00am     Go to treatment room.  They hook up my IV in my port, then I wait while three separate drugs        
go through it, one at a time.  Two are chemo drugs and one is a bone strengthener.  Each one takes 20-30 minutes along with lots of wait time, so we're there about 2 or 2 1/2 hours.  Jason brings me lunch, we hang out, etc.

The chemo rooms (or "pods" as they call them) have recliners for 6 people at a time to get treatment.  Usually I am the youngest one by far.  Yesterday, not the case.  Across from me was a 19 year old named Zach who had heart surgery last month for cancer that's in his heart and lungs.  Next to him was a 22 year old who has been at this for 3 years.  I started chatting with Zach's dad when he looked over at me and asked "I see you are getting chemo.  Why are you so cheery?  Are you just always this way?"  I explained that yes, part of it was my disposition and part of it was just my choice to focus on right now, always.  That's all I can control.  Plus, it's easy to be perky when you feel good!  It was good to talk with them, though, and see Zach laughing.  They said he's on the brink of feeling back to normal after his surgery, so he's on the mend hopefully.  When at treatment, Jason and I both always have a moment where we reflect back to the guy we met at my first chemo, who showed such a great attitude.  (read that post here).

Saturday, March 24, 2012

Our Crazy Food Adventure Begins

Cancer and cancer treatments are very, very complicated.  As a patient, it is easy to feel like if you just do exactly what the doctors tell you to do, you are doing EVERYTHING possible.  But we are finding that this is just not reality.  I have a wonderful oncologist.  The best.  Truly.  But his job is to get to know my cancer and figure out the  best way to beat the hell out of it.  

What that doesn't include is telling me the things I can be doing at home.  Luckily, over the last few years, Jason and I have been doing our own research about nutrition, foods that combat cancer (most things that are green), foods that feed cancer (most things that are yummy!), and what role stress, chemicals, and exercise play in preventing cancer.  

Let's be clear... just because I KNOW what's good for me doesn't mean I've done it.  I've been able to spout off research and studies left and right, usually with a bagel or Coke in my hand.  And now I'm kicking myself for it.  Just a little, though, since guilt and stress aren't going to make me feel any better.  

We have made a dramatic shift in the food in our house, though.  For those of you who don't know, about six months Jason and I watched a documentary called "Forks Over Knives", which is about all the ways the western diet feeds chronic disease.  It promotes a whole food, plant-based diet, which basically means going vegan.  About two days after watching this, Jason went full-on vegan.  No meat, no fish, no dairy, no cheese, no yogurt, no milk, no eggs.  If it comes from something that had parents, he doesn't ingest it.  I could not go that far, but I made some changes.

Then, with my diagnosis, we had to reassess again.  While I haven't yet gone full-on vegan, I have only had chicken probably 3 times in the last month, and salmon once, and that's all the meat.  I still have a little cheese here and there, but have moved to soy milk.  Rory LOVES the chocolate soy milk!  She's always been a huge vegetable and fruit eater, so she hasn't really noticed the changes.  We did buy vegan ice cream, which she believes is totally healthy and so therefore she can eat it anytime in her mind... "It says it's vegan, and I'M vegan, so I can have it, right" she asks at breakfast.  :)

I've started to choke down green smoothies Jason makes for me in the morning, and I've made vegan coffee cake and vegan cookies.  We have gained numerous new vegan cookbooks in the house and are finding new favorite recipes that make us feel good and can actually, ready for this... POSSIBLY SLOW OR REVERSE CANCER.  Yep... there's research to support that.  So, I'll do it.  Feel free to join us on this crazy food adventure!

Saturday, March 17, 2012

Back to the Living, Sunshine World

I eased back into work after two weeks away, as did Jason.  His mantra at work has been "I work when Jill works."   (I'll write another post on how amazing he is another time.  He doesn't read this blog, so I'm sure he won't mind if I gush a bit!)   It was SO good to get back into the office, even though my energy only lasted for about an hour and a half the first day.  It's amazing what it does for you just to have somewhere to go, to put on clothes that don't begin with the phrases "sweat-" or "yoga-", and put on some make-up.  And to see everyone at my office again was refreshing!  They've been so wonderful to us! By Thursday and Friday, I was back to full days and feeling back to normal completely.

I'm feeling good and looking forward to a whole week and a half with no doctors!

Friday, March 16, 2012

Tests, procedures and treatments.... Oh My!

The last couple of weeks have been a bit of a blur.  Between March 5-March 14, I  had an ultrasound, a CT scan, a bone scan and a liver biopsy.  My diagnosis was finalized and treatment was planned with my oncologist.  I had a chemo port implanted in my chest, and completed my first chemo treatment.  Yep - all between March 5-14.  Needless to say, my body and I were both exhausted!

 Here are a few pics of procedures.  I know it may seem odd to take pics, but it helps me document things, and hopefully also give people a sense of what we're spending our time doing at Siteman Cancer Center all the time!

Jason and Mimi waiting outside as I headed into my liver biopsy.
They laughed when I came out on the gurney texting on my phone.
Bone scan.  I had them cover my eyes because I'm claustrophobic.
 Don't want to see machines that close to my eyes!!
This one was weird because they strap you to the table.

Hanging out at first chemo.

First chemo.  Everyone in the room had to wear masks when the
connected my port.  Then we removed them, hung out and had lunch during treatment.
I even got to watch The Gilmore Girls!

Wednesday, March 7, 2012

Once Just Wasn't Enough...

This is the email I sent out to many family and friends on March 7.

Hi everyone,

Sorry to share this via email, but honestly, it's just efficient, and I know many of you have been waiting for details.  For those who hadn't yet heard, last month I saw my oncologist for my regular check-up, and they found that my liver enzymes were elevated.  We've done a number of tests and today we saw the oncologist.  The good news two-fold:
1)       We have a plan, and
2)      I get to keep my hair this time!
 Unfortunately, my breast cancer has returned and it is in my liver and possibly in my spine.  It's aggressive, but I will begin chemotherapy next Wednesday and will be doing chemo every two weeks for probably six months.  Luckily, this chemo won’t have nearly the side effects of the first time, so will be hopefully very easily tolerated. They say that the more aggressive cancers typically respond the best and quickest to the chemo.  

Tomorrow I will have a bone scan and Friday is my liver biopsy.

To be honest, it's not good news, but we will just do what they tell us to do day by day and hope for the best.  The doc says he has a number of patients in my situation and on this same chemo regimen who have been healthy for years and are running marathons.  We are feeling very positive at our house.  Thanks for all your prayers … just keep ‘em coming!

We have a great doctor who is on the cutting edge of research, so we are in good hands.  If you find I've left anyone off this email, please feel free to forward it.  And, I will be starting to post on my previous blog again with updates, so you can always check for updates.  

Also, Rory does know the basics.  She knows my breast cancer has returned and that I'll be going to the doctor for medicine.  We've been very matter-of-fact with her, so we appreciate your help in being positive and light around her if you are here in STL.  

Love you all!

Sunday, March 4, 2012

Ignorance was bliss

I can't believe it's been a year since I've written a post on this site.  Well, it's time.

I'm still getting checked out by my doctors every few months at this point, with mammograms every year.  At this point these are all routine now, with a level of non-eventfulness that I appreciate.  Yet one of these routine check-ins has recently led to a little stress.  A handful of weeks ago, my routine blood work showed that my liver enzymes were very elevated suddenly.  I get this blood work done every six months, and six months ago all was normal, but not so now.  There were only two changes in my life during that six months I could recall ... I had started taking a medication from my dermatologist, and I had started taking a handful of supplements under the supervision of a naturopath.

We took out one, then another, for about 5 weeks until they were all gone, and yet my liver numbers continue to climb.  I have figured out where my liver is in my body because I can feel it now.  It's slightly enlarged (which goes hand in hand with elevated enzymes), so I feel very full as the day goes on and my appetite is low by the end of the day.  So, tomorrow I have an ultrasound scheduled and Tuesday I have a CT scan.  There are many, many things that can cause elevated enzymes (possibly including Tamoxifen, my anti-cancer med) so everyone is reminding me not to worry.

The last time I was having tests like these done, four years ago, I was blissfully ignorant about the possibilities.  It's different having these kinds of tests now.  Don't get me wrong - I'm not all gloom and doom right now, just more experienced.  It's part of being a survivor, having experience that will no longer allow you to be blissfully unaware.  

I'm optimistic that getting things checked out regularly will lead to a positive outcome.  I'm optimistic because I've met other breast cancer survivors who went through periods of elevated liver enzymes for no explainable reason.  I'm optimistic because my oncologist didn't freak out or order tests immediately when my enzymes were first elevated.  And yet there will forever now be a part of me holding my breath at moments like this.