Tuesday, December 30, 2008

How to Prevent Cancer

2008 is almost over, and I'm glad to see it go!  We got through it just fine, though, and hopefully 2009 will bring a new house and a fresh beginning here in St. Louis for the three of us.  In 2009, the focus is making changes in my lifestyle that will lower my odds of dealing with this again.  You know what?  The things that will lower my odds of getting it again are the same things that will lower your risk of getting it in the first place.  So, I thought I'd share.  REMEMBER... 80-85% of women who get breast cancer have NO significant family history, just like me.  It's not "them" who get it, it's "us".  So, let's all be proactive.

The American Institute for Cancer Research has done a huge review of all the cancer research out there and determined what factors contribute MOST to cancer and what things can PREVENT cancer the most.  It's a great summary.  Here's the link to the full report.  There's also a fancy chart that shows how much each possible factor contributes to different kinds of cancer here.

In summary (for those of you who will never go read it, but who I care about very much), for those who are premenopausal, the three things they have listed that have the most convincing evidence of contributing to an increased risk of breast cancer are:  high birth weight, alcohol, and your height.  Seriously.  So, no more wine for me for the most part, and I'm going to start wearing flats.  :)  Since I can't do much about 2 of those 3, I'll check out the list of things that contribute to decreasing the risk of breast cancer.  Those are:  breastfeeding your kids (check), and high activity levels.  Anyone want to go for a walk? 







 

Monday, December 22, 2008

Almost There


Almost there.

I'm tired. There's just a lot going on, fitting cancer into your life. The holidays are still coming, work is still happening every day, Rory still needs attention. I thought that as I got to the end of my treatment I would be ecstatic, energetic, and jumping up and down. Instead, to be honest, I'm just tired. It's one more thing off my to do list for this week. I'm sure that once I get back to work after the holiday (we're taking a few days to head to my parents' house) and realize that I don't have to go for treatment, as has been my daily schedule for seven weeks, I'll absorb the fact that I'm really done a bit more. Even tomorrow I might get giddy as I walk out. But today, I have a cold that might be bronchitis, a long To Do list at work, and Christmas Eve is two days away. I'd be exhausted even without the whole treatment schedule, I believe.

p.s. Here's my hair. :) All mine.

Thursday, December 11, 2008

The Light at the End of the Tunnel --- I SEE IT!

Sorry I haven't written much lately.  To say it's been a busy time is an understatement.  I promise to come back and add more soon.

Thanks to those of you who have saent me emails (I've received a few in the last few days) just checking in.  It's nice to know you are thinking of me during the insanity of the holiday season! 

I'm doing very well and am almost done!  I have been in radiation every weekday since the beginning of November.  They are radiating the top quadrant of my chest, basically collarbone to under the breast on my left side.  Those big treatments will be done TOMORROW!  Then, I have just 7 more, "booster treatments" where they radiate just the surgery site.  My last day is December 23!! 

AND, in other big news, TODAY is hopefully my last day wearing my wig!!!  I have to double-check with the doctor today, but if it's ok to head back into haircolor, I have an appointment tomorrow morning!  No idea what color I'm going with, but it's such a symbol of being almost done to get rid of my wig. If I get it done, I'll post a picture over the weekend. 

Friday, October 24, 2008

When Are You "Done"?

When I was first diagnosed in May, I attended a Young Women's Breast Cancer Group (YWBCG) get-together, for yoga and dinner. This is a support group for women who were diagnosed under the age of 45. I expected to walk into a room full of bald heads. In fact, there was only one bald head there (I hadn't lost my hair yet) and the rest of the women had been out of treatment anywhere from 2-10 years. I couldn't understand why these women would still be attending events. They were all very nice, wonderful women, but I kept thinking, "Why do you still want to sit around and talk about cancer? Don't you just want to close the door when you're done with this chapter? Why are they still coming to this stuff?"

Now I know the answer. Because YOU ARE NEVER DONE. I'm realizing that this isn't just something to get through and forget about. Cancer is now part of my life. Not a chapter, but my daily life from now on. Why? Because it changes everything. Every day I now have to decide what to eat, thinking about what helps to lower my risk of a recurrence. I have to change my routine so I work out more, because research shows that walking briskly 5x/week for 30 minutes lowers my risk of a recurrence by 40%. Not just for a while, but for the rest of my life. I have to keep abreast of breast cancer research, because one of these days (and I believe it will be sooner rather than later), we're going to have, as a society, an Aha Moment when someone figures out what's been causing this. As every new gene mutation is discovered, I'll have to get tested. Because of the surgery I had, I'm at some risk for lymphedema for the next 10 years, so have to always wear gloves when I wash dishes and tell the woman giving me a manicure to be sure not to cut my cuticles because I can't risk the infection in my left arm. For the next 5-10 years I'll be on Tamoxifen, a drug that protects my cells from my naturally-produced estrogen, since the estrogen could fuel a recurrence. I'll be dealing with the side effects of the Tamoxifen for possibly the next 10 years. And the list goes on and on...

So now I know why the women who have finished treatment still attend the YWBCG meetings. Because breast cancer is still part of their daily lives and they are still fitting it into their busy lives, every day.

Monday, October 20, 2008

Pathology Report

Last week my pathology report came back. The margins are clean (which means they got the lump in one clean big chunk), so I don't need anymore surgery. YAY! Also, they removed 8 lymph nodes and they all were negative. We will see my oncologist tomorrow and see the surgeon on Wednesday to talk about whether I need physical therapy, when I'll start radiation, etc. I'm feeling good and back at work today. I still have limited mobility with my left arm, but other than that, I'm feeling good.

Friday, October 10, 2008

Home Sweet Home

Hi all, just a quick note to tell you I am home. The doctor tells us he was very pleased with the surgery, but we won't know for sure that I'm done with surgeries for another week. I did have some complications, though, with the anesthesia and it was not a pretty night. They couldn't waken me from surgery for hours and I was extremely nauseous. I got out of surgery about 12:30pm and they didn't take me to my room until almost 6:00pm because they couldn't wake me or get me to stop throwing up. Of course, Jason and everyone here were really worried, too. BUT, now I'm better, not nauseous, eating normally, and don't need any pain meds at all. I'm home with Rory and doing well. Resting, and wearing this weird drain, but much better.

THANK YOU for all the notes, text messages, phone messages, etc! I'll start catching up with everyone over the next few days.

Tuesday, October 7, 2008

Surgery Prep

I'm in the midst of trying to check things off my three neon-green posted To Do lists in my office, but wanted to write a quick note. My surgery is this Thursday (Yom Kippur) so I'm working hard to be sure my work projects are taken care of before I go. My mom is coming in town tomorrow (Wed) and surgery is first thing Thursday morning. For those who want to ask, but don't know how...

I'm having a lumpectomy along with an axillary lymph node dissection. Translation: they are taking out the lump in my breast (or what remains of it now that it's been shrunken down by the chemo) and all the lymph nodes under my left armpit. I'll have two scars. They say the lumpectomy is super easy, not a big deal. The lymph node part is a bit trickier post-op. Apparently Mother Nature doesn't like a void, so she fills the empty space where my lymph nodes were with fluid. I will be sporting a drain out of my underarm when it's all done, and when the fluid drainage slows down (in a week or two), I then go have the drain taken out. Not all women who have a lumpectomy have the lymph nodes taken out, too. In fact, I think most don't, but because my cancer had spread to my lymph nodes there, they take them out to lower my risk of recurrence.

I'm probably spending Thursday night at the hospital (by my request) so I can get more rest and so I don't scare Rory, as I know I'll look tired and pale following surgery. This way, I'll have recovered for 24 hours before she gets home from school on Friday and I'll look much better. I'll be up and around, hopefully, just with some limited mobility on the left arm, dealing with the drain, and of course, two surgery scars. Wow, that all sounds much worse than I'm anticipating this will be! When they did my biopsy back in May, it was pretty easy for me, so I'm hoping this will be pretty similar.

Other than a nasty cold that got me last week, I'm feeling good and ready for this. You may see a lot of posts from me as I may be resting with a laptop nearby a lot over the next week or two. So, feel free to drop me a line and say hi. Thanks for all your prayers and happy thoughts!!

Wednesday, October 1, 2008

YOU WRITE THE CAPTION

You have to check out my new post on our family blog! For those of you who don't know, the VP debate is tomorrow here on the Washington University campus, basically across the street from my office. You never know who you might see on campus the next couple of days!

http://www.lustbergfamily.blogspot.com/

Wednesday, September 17, 2008

It's Getting Snowy

1 minute, 45 seconds

A Reason to Celebrate

Today's reason to celebrate:  Today I was officially given clearance to drink alcohol again!!  YAY!!  It has been too long (since at least May 28, though I don't remember when the last time was I had a drink before I started treatment).  Now, the difficult task of picking a wine with which to start the celebration.  If any of you have recommendations, please share! 

Sunday, September 14, 2008

Menopause Sucks

Thanks to my cousin Laurie for sending this gem along. Makes me feel sorry for Jason, having to put up with me. No wonder Rory thinks I'm a crazy mommy.

"Q: How many women with MENOPAUSE does it take to change a light bulb?

Woman's Answer:

One! ONLY ONE!!!! And do you know WHY? Because no one else in this house knows HOW to change a light bulb! They don't even know that the bulb is BURNED OUT!! They would sit in the dark for THREE DAYS before they figured it out.

And, once they figured it out, they wouldn't be able to find the #&%!* light bulbs despite the fact that they've been in the SAME CABINET for the past 17 YEARS!

But if they did, by some miracle of God, actually find them, 2 DAYS LATER, the chair they dragged to stand on to change the STUPID light bulb would STILL BE IN THE SAME SPOT!!!!! AND UNDERNEATH IT WOULD BE THE WRAPPER THE FREAKING LIGHT BULBS CAME IN!!! BE CAUSE NO ONE EVER PICKS UP OR CARRIES OUT THE GARBAGE!!!! IT'S A WONDER WE HAVEN'T ALL SUFFOCATED FROM THE PILES OF GARBAGE THAT ARE A FOOT DEEP THROUGHOUT THE ENTIRE HOUSE!! IT WOULD TAKE AN ARMY TO CLEAN THIS PLACE! AND DON'T EVEN GET ME STARTED ON WHO CHANGES THE TOILET PAPER ROLL !!

I'm sorry. What was the question?"

Friday, September 12, 2008

Top 10 Best Things About Being in Chemo (now that I'm done)

10.  People will do anything for you.
9.  Nobody comments on the extra 6-7 pounds you've put on.
8.  Takes about half the time to get ready in the morning because you just slip on your hair and walk out.
7.  A whole summer of no shaving!!  Yay!
6.  Cleaning the bathroom is easier because there's less hair to clean up.
5.  People cater to your fickle whims of what you are in the mood to eat.  ("I want a fried twinkie."  "Jill, we're not at a fair."  "I'm in chemo!"  Magically, fried twinkie appears.
4.  Saving about $100/month on haircuts, shampoo and color.
3.  No periods!
2. Versatility in how I look:  "I don't do hair on weekends."
1.  SO many easy Halloween costume options... Mr. Clean, a Q-tip, Howie Mandell, Blue Man Group, Uncle Fester... the list goes on and on!

Wednesday, September 10, 2008

It's a big day

I have a list of blog posts to write, but haven't found much time lately.  However, I couldn't let this morning pass without writing a quick note about today, as it is a big day!  At 12:30 I start my LAST chemo treatment!!!  Yay!  6 of 6!  It's great to get the last one done, but in some ways today is not the day to celebrate, as it's like celebrating the last ass-kicking before it starts.  Give me about two weeks, until I'm feeling great again, then it's time to celebrate.  Though it will be nice to walk out of the chemo pod today and know I will not have to walk in again (knock on wood, or "Poo poo poo" as my mother-in-law says).  Soon I will write a post about the treatments themselves, show what they are like, etc. 

This is also the time for a big public sentimental moment of appreciation for Jason, who goes to every treatment with me, holds my hand and distracts me when they put in the IV (sometimes more than once), brings me snacks, carries my purse, and tells the nurses when to leave me alone if it's getting overwhelming.  Plus, he actually tries to help me with the crossword puzzles that come in the "Packet of Fun" the cancer center provides for entertainment. 

Also, surgery has been set for October 9, but I'll write more about that later.

Sunday, August 24, 2008

Feeling Lucky

I've always considered myself a fortunate person.  Maybe I watch too much CNN, but I've always found it easy to see stories of things going on in other people's lives and think, "I don't know how people handle it."  There are always tragedies, stories, etc. that are sad and destroy lives.  I've always thought that I'd never be able to handle something tragic.  I imagine I would curl in a ball on the floor and never be able to get up again.  I imagine Jason having to figure out how to pick me up, and how to explain to Rory the puddle her mother has become. 

I've never lost a close, close friend or family member.  I've not dealt with devastating, life-changing news.  Even now, with cancer, I don't feel I have.  I still feel so much like I'm living my normal life, just with some changes.  The day I got the news I had cancer, I was a puddle, I admit.  I was also recovering from outpatient surgery and the drugs.  But honestly, sending out the email to family and friends later that day and announcing what was going on made all the difference.  Plus, treatment thus far has been good.  I still feel very lucky. 

I've met other survivors, 20 years older than me, who have told me that it's normal to feel terrified, to wonder if I'm going to die, to wonder if I'm going to see Rory get married.  What no one has told some of these people is that it's also normal NOT to wonder about these things.  They don't cross my mind.  I have good doctors who have told me that I'm curable.  That's that.  I do what they tell me to do.  I read and learn and share.  And I live my life.  Maybe it's just that those people who are going through it when they are older don't have this sense of invincibility that comes with only being 36 and facing cancer.  Or maybe it's just something about how I'm wired.  Jason and my friends and family are often commenting on how strong I am, how well I'm handling this all, etc.  I just don't know any different.  I look around and realize I'm just fortunate.  In our house, the phrase, "You just never know what's going on in someone else's house" has become popular, as there are many, many people dealing with difficult times and situations, just like us.  Our eyes have opened with more empathy than ever. 

Friday, August 22, 2008

5 down, 1 to go

Wednesday was my 5th chemo treatment of six.  Rather than be in what they call "pods", rooms where up to 6 people are getting their treatment in lounge chairs, I got a private room with a bed.  I think they were just busy, but it was AWESOME!  I called Rebecca to see if she wanted to come visit.  Jason said, "Jill, this isn't CAMP!" but it felt like it.  I could talk on my cell phone and not worry about bothering people, etc.  There was a nice table where Jason could set up his laptop and work.  And we had a great nurse (Marilyn) who didn't screw up my IV.  Next week Jason and I will meet with the surgeon to see what's next.  They say that about 3-4 weeks after my last treatment (last treatment is Sept 10, three weeks later is Oct 1), I would have surgery.  Lumpectomy probably along with having all the lymph nodes removed from under my left armpit, which is the part that makes recovery longer.  Apparently those lymph nodes handle some kind of fluid, so you have to wear a drain for 1-3 weeks afterward until your body creates a work-around.  It limits the mobility on that side a lot, and that's the tough part of the recovery.  Then after full surgery recovery, I'll have 6 weeks of radiation, which should be much easier than chemo (though chemo has been pretty good to me).  Then, hopefully, all is good and well, maybe even finished by Christmas!! 

Thursday, August 7, 2008

Clear as a Bell

Just a quick note to let you all know that I'm doing much better.  Monday was rough, but I went to bed early and woke up Tuesday morning clear as a bell again.  Completely back to normal (insert your own joke here).  I think we were all a little surprised by Monday, but now that we know it can happen, we know how to handle it.  Thanks for all the notes, encouragement, support, and reminders of things I said or did on Monday (kidding!). 

Monday, August 4, 2008

Not Skittles and Rainbows

My friend, Ginnie, recently posted a comment on here stating that it's ok to share when everything isn't "skittles and rainbows".  First, I have to say, Ginnie, that I love that phrase and have adopted it.  Hope you don't mind.  Secondly, it's not skittles and rainbows right now.   This treatment (#4) has really hit me.  The doc said the most common side effect of treatment to build a cumulative effect is the fatigue and this one got me.  Usually on treatment day, I sleep for about 20 minutes during treatment, then just go to bed early that night.  Otherwise, I'm pretty good.  This time, I slept through half my treatment, including falling asleep while our friend Melissa was visiting us and dropping off dinner at treatment!  (Sorry, Melissa!)  I slept the whole ride home, and then about 3 hours in the afternoon.  For a few days I have to take my anti-nausea meds, which have a nice little stimulant in them, so I usually feel decent through the weekend.  This weekend, I was just a bit more tired than usual.  But today, I'm a bit of a mess.  Very tired, emotionally off track.  Not sure I've mentioned the effects of all this on my hormones before, but basically chemo sends you into menopause, so I'm sure I'm tough to be around.  I feel like I went through an accelerated menopause PLUS I'm tired.  My head is a little fuzzy, like I'm just moving slowly.  It's kind of like the hormonal roller coaster of being pregnant, but without the happy little glow.  Rory decided this weekend to be a true two-year-old and wore us all out a bit, too.  As always, family and friends are helping out, for which I am grateful.  So, keep your fingers crossed for me and send any extra energy and focus you might have my way, as I can use it.  Love you all!

Tuesday, July 29, 2008

Hump Day!

Please take a minute and get up from your seat please.  Shake whatever body part you would like and do a quick little dance.  Really.  I'll wait.



THAT was your little celebration of Hump Day!  Tomorrow is treatment #4 of 6, so that means that today is Hump Day in my chemo treatment schedule.  Thanks for celebrating with us!  For fun, I'm attaching a picture of Rory.

Monday, July 14, 2008

Higher Math












After a fairly last-minute invitation, some of our friends and family joined us for coffee and cupcakes to celebrate the start of my 38th year on the planet. I think my math is correct, there... after you've been here a year you are 1, so when I'm turning 37, it's the start of my 38th year on the planet, right?? Regardless, it was cause for celebration and cupcake baking by Jason and Rory. Thanks to everyone who came... it was really wonderful to see you all, especially my parents who made a last-minute trip down!

Monday, July 7, 2008

A little drop of well-wishing

As I was just sitting at my desk, yet another email popped into my Gmail Inbox telling me that someone had posted to the blog (in this case, my cousin Jessica).  I just wanted to post a public Thank You to everyone who continues to "check in" with me and on me via the blog and email.  I don't often get to write back, but I want you all to know that I appreciate it.  It's really touching to see how many cousins who I see once every 8 years and long-ago friends I've lost contact with have emailed or posted not once, but regularly.  It seems that almost every day I get a nice little drop of well-wishing in my Inbox, often from someone I'm surprised to know is even aware of what's going on. 

I am also getting wonderful cards in the mail from people.  Honestly, I'm a little befuddled by it all, as I find it hard to fathom that in people's busy lives they make it a priority to pick up a card, write me a note, and drop it in the mail. 

These types of things really keep my energy and mood elevated, so thank you all so much!

The Cost of Treatment

I've heard before that one of the major causes of people declaring bankruptcy is medical bills.  I am extremely blessed to have insurance, VERY good insurance, but thought I'd share with you some of the sobering details of what treatment costs, because it's astounding. 

For the month of May (May 3-28), my insurance was billed $45,825.  This was ONE MONTH.  It included the first internist appt where I showed him the lump under my arm, testing, seeing several specialists,  outpatient surgery to remove the two lymph nodes (3 hours at the hospital), diagnosis, and my first chemo treatment.  It did NOT include my full surgery yet to come, the remaining five chemo treatments, and all radiation treatments yet to come (30 of them). 

A few line items:
One chemo treatment:  $5,644
ONE Neulasta shot (Jason gives me one after each treatment):  $6,047
Outpatient surgery total (again, I was home by 11am):  $17,042

It is overwhelming to think about how people deal with this who don't have good insurance, or God forbid, insurance at all.  I am thankful every day for my station in life and the fact that this whole situation, as big as it is, is not a financial burden for us.  I can't imagine the choices people have to make if the financial implications are part of their medical treatment decision-making process. 

Here is an article Jason found about the costs of certain cancer drugs (nothing I'm taking).  Interesting reading.  http://www.nytimes.com/2008/07/06/health/06avastin.html?hp

Tuesday, July 1, 2008

Please sign this petition!

http://www.lifetimetv.com/breastcancer/petition/signpetition..php

There's a bill called the Breast Cancer Patient Protection Act which will require Insurance Companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the 'drive-through mastectomy' where women are forced to go home just a few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached. Lifetime Television has put this bill on their Web page with a petition drive to show our support. Last year over half the House signed on. PLEASE!! Sign the petition by clicking on the Web site babove. You need not give more than your name and zip code number.

Friday, June 20, 2008

ROUND ONE: JILL (DING! DING!)

Wednesday was my second treatment. Before the appointment, they check my blood work to see if my platelets, red blood cells and white blood cells are back up to par for round 2. All was good. Then they feel the tumor and draw it on my breast, so they can measure it. The truly scientific way to measure progress. The good news... they said that my tumor has decreased in size by 50-60% already, after ONE treatment!! Round One - JILL!!! It won't change my treatment plan, but it does get rid of it faster and it does make the surgery less invasive as the tumor gets smaller.

So... thank you to all of you who have been praying for me and us. We'll keep doing what we're doing. You keep doing what you're doing. We'll lick this thing together. The goal now is for it to be a dead tumor by surgery time. That's the best possible target and a real possibility. Thanks for all your support and prayers!

Monday, June 16, 2008

Girls, women can cut risk of breast cancer through exercise

This article was published today on the Wash U site. For all my young friends out there, get working out!!

http://record.wustl.edu/news/page/normal/11913.html

BTW, I'll put up more posts soon. Yesterday we did the big shave, and I'm wearing my wig for the first time today. Pictures and/or video should be posted tonight or tomorrow. :)

Sunday, June 15, 2008

The Big Shave!





I've always heard people who've been through chemo say that the worst moment is the diagnosis, but a CLOSE second is the day your hair falls out. On Father's Day, I decided I had had enough of the shedding. It was getting to be tough emotionally to be thinking all the time, "Oh, don't touch your hair because more will come out,", or "Will TODAY be the day that it's now obvious to other people and I have to shave it?" So, after an emotional morning, I felt it was time. I had picked up my wigs on Friday, had a few cute hats and scarves in my stash, so felt I was ready to start the work week on Monday with my wig.

I called my wonderful friends Rebecca and Bobby Jones and they loaned me a clipper. A couple hours later, I was ready. Happy about it, looking forward to the relief, and ready to shave. The whole family gathered out on the patio, we got out the hammock, chicken was grilling, and cameras were rolling, and Rory was much more interested in playing ball in the yard with Poppy. I did the first part of the shaving myself, sitting on the concrete patio under the shade. Jason did clean-up for me. We all had a great time, making G.I. Jane jokes and searching for what grotesque previously-unknown birthmark we might find under all that hair. Luckily, what we found is that I actually have a pretty nicely-shaped head!

When we finished, Rory came over, rubbed by fuzzy head, and pointed at the clipper saying, "I want some now." We explained that Mommy was the only one shaving her head today, so Mommy could wear her "new hairs" as she calls my wigs. Then, in her two-year-old way, she said, "Mommy, you look kinda like a baby." I laughed and said, "You know Rory, I guess I probably do, don't I?"

So, here are some pics of the shorn head and the wig.

Wednesday, June 4, 2008

For GIRLS ONLY (seriously guys, skip this one)

I never thought I'd say this, but I do believe that right now, dealing with a period is much more difficult than dealing with chemo! I KNOW women out there will understand. I don't think I've mentioned this yet, but my particular type of cancer is estrogen-receptive, which means it could be fed by estrogen. Therefore, as soon as I was diagnosed, I had to stop taking my birth control pills. It has been WAY too long since I was dealing with periods that were not somewhat modified and regulated by birth control pills, so honestly, THIS is the most difficult thing I'm dealing with so far. I'm crampy and it's throwing off my digestive system big time! Not fun.

Over the weekend, some tiredness kicked in. During the first four days after treatment, I have to take a specific anti-nausea pill that also includes a handy little stimulant, which was good to keep me feeling great those four days. Saturday night was the last one of those, so by Sunday around 6pm I was ready for bed. Just no energy, but otherwise fine. I'm at work this week, doing well, minus all this girlie stuff.

p.s. The new video from Thursday is a couple posts down now. Google Video really has some serious hiccups so it took this long to be able to get it to work.

Friday, May 30, 2008

At work

I'm at work today, feeling good. Slight moments of being fuzzy in the head, but overall very good. Eating normally, no nausea or bone pain (both very typical side effects), but I've brought my meds with me in case. I called the oncology nurse just to check in and she gave me a warning that some of the meds they gave me via IV on Wednesday that are anti-nausea meds will be wearing off soon, so stay on my guard. Also, the bone pain could kick in soon, so she said to keep my meds nearby and take them when needed, IF needed.

So, now that the fear of god has been instilled for the weekend, I'm going to go keep my fingers crossed while attempting to eat a peanut butter sandwich.

p.s. I'm trying to post a video Jason and I did yesterday but am having some technical difficulties, so watch for a video to show up hopefully soon.

Thursday, May 29, 2008

Oh My I'm Uma

One of my meds is a shot of Neulasta (good stuff that helps your bone marrow build more white blood cells, red blood cells, and platelets) that Jason has to give me 24 hours after each treatment. The first one was about an hour ago. Here are his thoughts. The camera shakes b/c it's on my lap and I'm laughing.


Video of Jason describing giving me shot

"Every day is a good day"

Yesterday was what we are calling Chemo Party #1. Though it was scary, I'm feeling ok. I had great company (Jason was there the whole time, and thanks for stopping by with the balloon, Rebecca!), snacks and nice staff working there, but still, it's a little scary. We were there about 6 hours (first time takes longer) and I came home and had dinner with everyone. I was just a slight bit tired. I slept well and got up feeling ok. I'm just taking all my anti-nausea meds, and so far they are doing their job. I've been eating small light meals all day and have been feeling really good. ("poo-poo-poo!" That's what the Jewish people in the room tell me to say for good luck every time I say I'm feeling good.)

When we were there yesterday, we met a man in the bed next to mine. He was there with his wife for his third round of battle with cancer. He had multiple tumors and had dropped about 70 pounds in the time he was sick. He was happy because THIS treatment was making the tumors stop growing. They weren't getting smaller, they just stopped growing. His wife said that he had been given 6 months to live TWICE and was still around. And this man looked at us with a huge smile on his face and said, "Every day is a good day!" THAT takes your breath away.

Tuesday, May 27, 2008

Harry Potter vs. Voldemort

Tomorrow is the big day. First chemo treatment. I'm nervous, but at the same time energized and ready to go! I told Jason last night that I feel a bit like Harry Potter before a showdown with Voldemort. Harry's all big talk, and then when they meet, Voldemort can slap him so hard he crumples against a wall, not really comprehending what he's up against. That's what I keep wondering. Am I completely underestimating this thing? I feel really good right now, feel like I've done my research, heard all the possible side effects, made plans to try to handle what comes, but still don't have any idea what's coming. Because I feel good, it almost feels like I'm volunteering to get my ass kicked for no reason.

At this point, I just want to get started, as I think the anticipation is tough. Now, is it tougher than the treatment?... I guess we'll see. Keep your fingers crossed for me.

Sunday, May 25, 2008

The first big haircut






In preparation for the hair loss that is sure to come (probably in about 2-3 weeks), we went yesterday and had my hair cut very short. I had to psychologically get ready for it. Plus, it helps with the mess when my hair finally does start falling out. We took Rory with us so she could watch and not be shocked when Mommy came home with short hair. Of course, she sat there somewhat patiently the whole time because she thought SHE was next! Wow, the disappointment.

So, here are some not-great pics of my new hair. For those of you who have known me since high school, get ready for this flashback!

The picture with the pink hat is what we guess I will look like minus hair, or in my next life, when I come back as a fish.

Thursday, May 22, 2008

Article about cancer diagnosis

This article was on CNN.com today... interesting timing. Thought some of you might be interested in it. If you have questions, just let me know!

After cancer diagnosis, what comes next

By the way, if you haven't noticed, there is a "Comments" tag below this entry. You can click on that and write a comment to the blog anytime. If you sign in as an anonymous person, please be sure to type your name into the comment so I know who left it (I know that sounds strange, but you'll understand when you see it). This is a fully-participatory blog!

Let the chemo begin!

A lot has happened and I haven't had much time to update, so I'll write a little now and hopefully over the next few days I'll come back and add some details in. Yesterday we met with an oncologist at Siteman Cancer Center and we really liked him so I'll be doing my treatment with him. We've decided to start as soon as possible, so my first round of chemo is scheduled for Wednesday. Yep, next week. May 28, almost 6 weeks to the day from when I found the lump and 6 1/2 weeks since we moved. It's a bit mind-boggling to think of it that way.

I'll have chemo once every 3 weeks, for 6 treatments. My last treatment should be on or around September 10. After that, surgery, then radiation. But those are a long way away right now.

Right now, the planning is on. Cleaners for the house; antibacterial hand gel for every possible location; consultations about wigs; appointments to cut my hair super-short before it comes out itself; reading books about how to handle this with toddlers; designating a little bag for snacks, comfortable things, and entertainment for the 2-3 hours we'll be sitting at chemo; researching the drugs they will be putting in my system during chemo; researching the drugs i'll be taking to counteract the side effects of the drugs they will be putting in my system during chemo; shopping for scarves, hats, etc. of every imaginable type (interesting thing I've learned: polyester and silk will slide off my head, so i'll have to stick with cotton); talking with Rory's school so they can help keep an eye on her for signs of stress; finding support groups; consideration of air purifiers; checking every possibility with insurance for flexible spending decisions; figuring out how to make meals, shopping, etc. as easy as possible for a busy household that's about to get busier; and of course, I'm still at WORK and trying to do some of that, too. That's a small peek into what is in my rolodex of to-dos right now, along with, of course, get rest, spend time with friends and family, do some special things with Rory and Jason, and once in a while stop and soak it all in.

Saturday, May 17, 2008

Thank god for the weekends!

Yes weekends are always wonderful, but now I have a new fact about weekends to appreciate. DOCTOR'S OFFICES ARE CLOSED! Yay! If they are open, it seems like my phone rings non-stop. So now, no tests, no calls, no appts for a whole weekend! Hope you enjoy your weekend, too!

Quick Hello

Friday, May 16, 2008

Funnies

You know, you have to be able to find the humor in ANYTHING. So, I'll be sure to share the humor with you all along the way, too.

Did you know that at the breast center at Missouri Baptist hospital, the lights that are on the walls outside the exam and waiting room doors look just like breasts?? Really! They have those little white round touch-lights you see advertised on TV, but they have big blue circles in the middle and look just like breasts. Jason asked about it yesterday, if it was a joke, and THEY HAD NEVER NOTICED!

Something I've learned: NEVER believe a doctor who says you are just coming in for a discussion. I went in for a "discussion" yesterday and left having had a double needle biopsy, which is the equivalent of having someone attack your chest with a staple gun while playing quiet music and asking you to hold still. Apparently "discussion" has another meaning that I need to learn.

More funnies later!

New vocabulary

My cousin Laurie said that we shouldn't have to learn any more big words after we have our diploma, but apparently my doctors think otherwise. Yesterday was a big day. Jason and I met with the radiologist oncologist yesterday and here's what we found out.

What we know: It's breast cancer. For those who like data and speak cancer-lingo, I have a 1.8 cm tumor behind my left nipple. Once they showed us where it is, we could feel it. There is a possible second tumor in the same breast, but a test is being done to see if it's actually a tumor or if it's nothing. We'll know that answer on Monday/Tuesday. The size of my tumor would put me in the Stage 1 category, but apparently you automatically get a bonus stage if it has spread anywhere, which mine had (to the lymph node they took out on Monday), so I'm in Stage II. There are four or five stages... I forget.

What will happen: Ready? This is the new vocabulary part I referred to earlier. We definitely know that there will be surgery, radiation, and chemotherapy.

What we don't know yet: We don't yet know the order of the treatments. We don't yet know whether I'll have a lumpectomy (just take out the tumor behind my nipple) or a mastectomy (removal of the entire breast). That decision is based on whether this second something in my breast is a tumor. If it is, the whole breast goes. If it is nothing, probably a lumpectomy. Also, either way, they are also going to remove all the lymph nodes under my left arm, just as a precaution to keep it from recurring.

The good news: A wonderful woman at Washington University who helped to hire me happens to have strong connections to Siteman Cancer Center here in STL. This is an amazing cancer facility. Pam (the wonderful woman) called me yesterday to tell me that she made a call on my behalf and the DIRECTOR of Siteman Cancer Center will be seeing me personally on Tuesday. So, if you all have a free minute, please say a quick prayer of appreciation for Pam, ok? I can't tell you how moved we all have been at her dedication to helping me find the best care possible.

Thursday, May 15, 2008

Some heavy news

On Monday, May 12, this is the email I sent out to many friends and family:

Hi everyone...

I am so sorry to be sending this via email, but I'm sure you'll understand why. Some of you know and many of you don't, that a few days after we moved to STL, I had a lymph node under my left arm that I noticed was slightly enlarged. Knowing I was starting a new job a few days later and wouldn't have time to get to a doctor, I thought I'd rather be safe than sorry and went to a doctor to get it checked out. As you know, things have been stressful with the move, new job, etc., so I was probably just fighting off a bug and my lymph node was getting taxed. The doctor ordered a number of tests that all came back normal (blood, urine, chest x-ray). Two weeks later (when I was on my new insurance), he ordered some CT scans (basically my whole body above the knee). They all came back normal except that I had a big bump under my left arm. A mammogram was also done which came back normal.

After that, the only way to see what else might be going on was to do small outpatient surgery, remove the node, and biopsy it. That procedure was this morning. Several of the results will take until the end of the week to get back, but some results were available today. Immediately following the procedure, they told me that the screening for cancer came back positive. They aren't sure what kind it is, so I'll be having an MRI tomorrow. Other than the incision from the procedure this morning, I feel absolutely fine. My parents were in town for Mother's Day and stayed through the procedure, so it was nice to have them here today to talk with the doctor, too.

I am taking a bit of a hiatus from my phone right now and am not really ready to talk about it. I hope you understand. I will be checking email and will respond when I can. I plan on being back at work on Wednesday, pending any results from tomorrow's MRI. If any of you really have questions, Jason's cell number is xxx-xxx-xxxx(please call in the evenings or weekends, as this is also his work phone temporarily). The number here at his parents' house is xxx-xxx-xxxx. Feel free to call if you want to talk to Jason (or Debbie, of course).

You are my friends, and I love you. Please take a moment to put me in your prayers. Thanks.

Jill

Our move to STL

On April 12 we moved to St. Louis. We are still selling our house in HOU so are living with Jason's parents in the meantime. Things are busy getting to know the new city, and things are a bit stressful as we all figure out how we are going to live in one house (remember, we brought two adults, one toddler and a cat into a house that already had two adults and a sickly dog). Jason is working from home for a week or two until there is space in the STL office for him. I start work on April 21. We are still waiting for our stuff from the movers, which doesn't arrive until April 15.

Welcome to my new blog

Welcome to my new blog. All optimists welcome!

I have a story to document, so this is where I'm going to do that. I want you all to be able to know what's going on and how we are doing, but also want to be able to "talk" about how I'm feeling and what I'm thinking about. So, I'm going to write a few historical entries below, just so we have a record, and then I'll try to add to this regularly.

You can always check out what has now become our "Rory" site at www.lustbergfamily.blogspot.com to see how she is growing!