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!