Tuesday, July 23, 2013

Last Chemo!

We made it to the last one! And good news! My platelets went from 128 UP to 132! Good job, prayer warriors!!!

I wasn't able to ride my bike over this time because we will have to run some errands and pick up Maia after we are done here today. Thanks so much to the families that took both kids overnight last night and for the day today, so that they wouldn't be so bored.

I decided to bookend my 6 chemo treatments by wearing the same t-shirt today as I wore to my first one:

Today, July 23

They say I will start to regrow hair in about 3 months, so I am excited to also get my 3rd wig hopefully today around 1:00, if it comes via UPS. I'm going with a long brown one like my hair was when I started this whole thing:

First Chemo, April 11

Only the wig will be way lower maintenance, and will look nice every time. And I never have to color it. I don't know, this wig thing is pretty sweet. Except for not really being able to swim at the pool, and having to grill and bake with no hair because the heat will melt the synthetic material. I like traveling in cognito, and surprising folks with my different look each day.

What's to come:

While this is my last "Big Chemo," I will still have to do one of the chemo drugs, Herceptin, every 3 weeks for the rest of the year. I'm assuming that means until the anniversary of when I started- April 11.  Herceptin does not have the brutal side-effects of the Cytoxin and Taxotere that are the other 2/3 of my Big Chemo infusions. The only side effect of Herceptin- which is the chemotherapy that is targeted directly at the HER-2 receptor on my cancer cells, is there is potential for heart damage. I had a baseline EKG before I started in April, and I will have a follow-up test in September.

I have surgery scheduled on August 21. Two days after the kids start back to school. It also happens to be our first parent commitment day at All City Elementary, where Maia goes to school. We have great families there, so it won't be a problem to get someone to switch with us, it's just inconvenient because it's the first week, and there's training involved. AND we have a brand new teacher to the school in Maia's classroom this year.  Way to make a good impression!

The surgery will be a double mastectomy with reconstruction and implants. "Why so invasive if your tumor is only the size of a grain of sand now?" you may ask. My reasons are a.) There is only a 5%-11% chance of recurrence with this surgery as opposed to a lumpectomy. My general surgeon says that I will probably be at the lower end of that range. b.) no radiation. c.) I never have to have a mammogram again! d.) uh... new boobs. For a naturally rather under-endowed girl, this is pretty exciting! I will finally get to be the size I've always pretended to be, or maybe even bigger! (Photos above? My most padded push-up bra.)

The reconstruction with implants will be quite the process, and no one who has had it says it is fun. They will insert expanders behind the pectoral muscles in my chest wall with these little water balloons in them. They each have a port that the plastic surgeon will access and insert a few cc's at a time over the course of about 3 months until I am about the size I want to be. Then they go one size larger, and do a second surgery to remove the expanders and insert the actual implants, which will give a more natural look and feel. THEN a few months later, they will make fake nipples, and once I'm healed from that, I can go to a tattoo artist (affiliated with the medical center) and have the aureolas tattooed on. Sorry about that. It was graphic. Should have warned you. I promise not to post pictures of any of those steps.  Maybe just the change in size through my clothes.

This first surgery will involve significant recovery time. I will have to take 4-6 weeks off from work, which means I can't go back to my regular teaching duties at USF until the first week in October. I have taken the whole summer off, so I am kind of chomping at the bit to get back at it, but what are you going to do?! I will reduce the number of students I take this semester, and teach 8-45 minute lessons instead of 12-30 minute ones. It will all work out just fine.

During my surgery recovery, I will continue to receive Herceptin every 3 weeks, and I will also start hormone replacement therapy. They will keep me on a daily drug called Tamoxifen for either 5 or 10 years which will keep me in early menopause probably until I go into real menopause. Bleh.

Prayer Requests:

My latest side effect is that my fingernails are turning white and the nail beds feel bruised. I posted on Facebook the other day that they feel like they've been gently smashed with a hammer. I never felt the impact, but I feel the after-effects. My oncologist is concerned about that because it means that the nails are detaching from the nail beds. I am to keep them very short, keep my hands out of water, avoid traumas (don't actually smash them with a hammer), and stay away from dirty projects (garden digging, litter box cleaning, etc.). If they start to ooze, I am to call in for an antibiotic right away.

Obviously, this will impede my piano playing (and thus, my teaching style) pretty significantly. So I ask you to join me in praying that my nails get healthier and don't try to abandon me. So far, my toes are unaffected, so we can also pray that they stay that way.

I will be having a follow-up EKG (mentioned above) on Sept. 13. Praying for no cardiac damage from the chemotherapy. I am definitely slowing down. I can tell that I run out of breath faster, and my muscles don't handle the exercise as well as normal. Could be because I don't exercise nearly enough, so I will be gently ramping that back up before surgery to help with my recovery.

We can keep praying for my platelets, as they need to be right about where they are now or a little higher for surgery. I will have labs drawn a couple of weeks before surgery to check them. Low platelets during such an invasive surgery can lead to big problems, so I need my body to be working the best it can.

And of course, recovery from surgery. There is a 2-night hospital stay, and the aforementioned 4-6 weeks off of work. I am not a physically strong person, so this physical recovery concerns me a bit. Also, it will slow me down, which makes me crazy. And I will finally have to actually rely on others to really help out. This has been a rather long, drawn out process, so I'm afraid people's motivation to help out at one of those really busy times of the year might be a little low. Everyone was very willing to help at the time of diagnosis, but here's where we will actually need it.

They will inspect every millimeter of my remaining breast tissue at the time of surgery, to make sure there is no sign of any remaining disease. If I do not pass that little test, I will have to undergo further treatment in the form of a medical study called the Carolyn Study. Dr. Krie wouldn't explain that to me today, "We'll cross that bridge if we come to it." So, we're praying that there is no more evidence of cancer at the time of surgery and I can be declared cancer free.

So today is a day of celebration! Even though, I anticipate that I will crash pretty hard this afternoon and evening from that Neulasta shot, tomorrow won't be too bad. Then I'll go through a bit of a slump, but I should be feeling well enough by Sunday to enjoy our annual outdoor service at McKennan park.

Hooray! Thanks for checking in. Your support means the world to me!

Here's the newest wig, if you were curious. :)

Wednesday, July 17, 2013

Follow-Up MRI

Every time I go into my oncologist, Dr. Krie's office, I ask if I really have to do all the rounds of chemo. It's gotten so that she anticipates the question and says "YES! You really have to," before I can finish asking.

I have been waiting for some kind of follow-up testing to see how effective the chemo has been, and finally had that this week. I had a follow-up MRI on Monday, and declared to anyone who would listen that I was sure they would find no more cancer.

Then I was going to go ask Dr. Krie if we really had to do round #6 if there was no more cancer. (She undoubtedly already had her answer ready to fire off like Annie Oakley).

Anyway, I just got a call from her office, and the test results are in. The original size of the tumor was 1.6 centimeters. After 5 rounds of chemo, it is down to .6 millimeters.

To put that in perspective, 1.6 cm is about the size of a marble:

And .6 millimeters is about the size of the world's smallest flower- the wolfia punctata, a type of aquatic duckweed.
Google was not really helpful in finding things that are .6mm, 
so here's some tiny green things...

So... that's pretty good news. I guess I'll endure the last round of chemo on Tuesday, and the surgery- which is set for August 21, so that cancer, that stinky little jerk, won't make a return visit.

I ask you to continue to pray that my platelet levels be high enough to do chemo on Tuesday. After my MRI on Monday, it took about 4 hours for my IV puncture to stop bleeding, which isn't a great sign. The surgery is scheduled for 7 weeks after my last chemo, and they require 6, so I'm assuming that it won't be delayed even if I have to wait a week for the last treatment. I just want to get it over with.

On a side note, I discovered this book at the library last week:

It is a graphic novel (i.e. comic book) about the author's own battle with breast cancer. I thoroughly enjoyed it. Refreshingly honest, funny and agonizingly real all at once. This is the book to give as a gift to that friend who was just diagnosed. Only, maybe wait a few months.

Thursday, July 11, 2013


I am on the other side of chemo treatment #5 out of 6! Hooray! Almost there!

Honestly, it seems like this one was possibly the easiest one yet. I decided to not just lay around and let things happen to me. I forced myself to get up and go out for a walk every day- though on the first of those days, I think we made it maybe a quarter of a mile. I stayed hydrated (good for me!), and in my brain-addled state said "yes" to doing another show in the park.  In 4 rehearsals. It opens tomorrow. Whoops. In my defense, I thought I was agreeing to play the piano for a show, but they had an actor back out at the last second, so they opted to pre-record the music and I wound up playing Calamity Jane in a little musical revue about the wild women of the West:

Yee haw!

Have I mentioned that I don't DO Western, cowgirl, country, hoedowns, or anything of the like?! My mom, the rodeo gal that she is, thinks this is hilarious, and is happily loaning me a pair of swanky cowboy boots.

This reminds me of my Valleyfair! Days.

There is this to be said, I get to work with some wonderfully talented college students (most of which I've had as voice students) AND Maia gets to be in the show too. She's super excited because she has lines for the first time! This proud mama thinks she is doing a fantastic job.

So that's what's going on with me. Now, let me get to the point of what I wanted to write about.

Last Sunday morning, I made it to church on a "dark" weekend. I rolled out of bed relatively early- I hadn't slept well that night, possibly because of all the napping on Saturday. The kids were at grandma's, so I only had to get myself out of the door. 

I looked in the mirror at myself and saw this: 

I had planned to wear a lovely outfit, with my big ol' hat, and knew that I would look like a movie star by the time I was done in the bathroom that morning. Look good, feel better, right? So, in a moment of snarkiness, I decided to do a before and after picture of my morning routine and throw it on Facebook:

Don't tell me you can't see the resemblance to the 
hairless cat above in the picture on the left!

I had 94 "likes" on that picture, and several comments about how I look beautiful and tough, and how brave I am. My friend Julie said, "You just overcame a major hurdle, didn't you? So proud of you!" She hit the nail on the head. I cannot tell you how much I try to hide the ugly side of me from the world. Everything in me wants to look like I have it all together, and that cancer can't make me ugly.

But it does.

So I've been thinking about this whole area of not feeling very pretty lately. I know that beauty is fleeting, and we're all just dust in the wind, etc. I just had hoped my beauty would fade a little slower. In the grand scheme of my life, I really haven't had it that long. 

I was kind of an ugly baby...
recognize the hairless cat's sneer?

I was an awkward little kid...

A bit of a goof for a while...

Then things really hit the fan in middle school...
Purple tinted glasses with my name on them. The epitome of cool.

I turned a corner for a while once the braces came off and I got contacts...

But I was such a dork, and contacts were so much work! Look at this one! Matt & I looked our VERY best for this picture:

Argh! I'm dying! Someone once told me that I should take a picture of my outfit every day, because I always wore the weirdest stuff. I am so thankful that Instagram did not exist when I was in high school and college!  Please tell me my 20's & 30's were better...

sometimes yes... 

sometimes no.

OK, now in my defense, I had lost a lot of blood 
right before this wedding, which is why I look vaguely vampirish.

Who cares what I look like?! Cute baby and cute kitty!

Let's just say 40 was actually a positive turn for me:

My 40th birthday party. 
Yes that is a tiara. Have you MET me?

Thanks for taking that little trip down memory lane with me. The point is, beauty is an elusive thing. It comes and goes, and it's all such a vain pursuit! (pun intended)

We all have our pretty days and our ugly days. It's just part of being human. Sadly, in the process of killing the cancer cells in my body, chemo has also killed all my hormones. Turns out, estrogen is what make you feel sexy. And I don't anymore. 

I was lamenting to the Lord about how I don't feel attractive at all anymore, and the song, "You're Beautiful" by Phil Wickham kept popping into my head. And I thought, "Well, that's not appropriate at all. It's not God calling me beautiful. It's a worship song to Him, and it's not about me at all. Stop being so narcissistic! Sing it back to Him instead!" 

Then I remembered this verse.
"So God created mankind in his own image. In the image of God he created them; male and female he created them."  Genesis 1:27
and this one:
 "Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is- his good, pleasing and perfect will." Romans 12:2
and this one:
"The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart." 1 Samuel 16:7
and then the song "Beautiful Things" by Gungor showed up on my playlist.
You make beautiful things, You make beautiful things out of the dust.
You make beautiful things, You make beautiful things out of us.
Then in my morning Bible study, this paragraph jumped out at me, 
"You and I want God to be able to look on us amid our overindulged, self-absorbed culture, then glance to His right and say, 'She has an extraordinary spirit, doesn't she, Son?' Perhaps Christ will nod His head and, while thinking the thoughts of an anxious bridegroom, lean over and say, 'And isn't she beautiful?'" (p. 105)

This, by the way, is how God talks to me. He just dumped out a whole bucketful of love all over me right when I needed it. He does this for all of us, we just have to stop and listen. 

Oh, and he used Dustin Hoffman too. 

It just so happened that this old interview with Dustin Hoffman about the movie "Tootsie" has been trending on Facebook lately. He talked about having Hollywood makeup and special effects experts turn him into a woman, so he could see if it was believable or not. 

“When we got to that point and looked at it on screen, I was shocked that I wasn’t more attractive. I said, ‘Now you have me looking like a woman, now make me a beautiful woman.’ Because I thought I should be beautiful. … And they said to me, ‘That’s as good as it gets.’”
Sometimes we have to live with "as good as it gets." Whether it's our beauty, our health, or relationships, or whatever life has handed us. But the great part is that God calls our "as good as it gets" his masterpiece.
Do you want to know why I have gotten prettier over 20 years of marriage? Because my husband looks at me daily with love shining in his eyes and calls me beautiful. I have become what he calls out in me. My spirit draws closer to God because He looks at me and calls me his Beloved. I have become what He calls out in me because I choose to believe it.

I will close with another reference to our women's Bible study. This week, we made a declaration of belief at the end of our group session, and I'd like to share it with you. It comes from Daniel Chapter 5.  I encourage you to insert your name, and start treating yourself as God's beloved holy vessel, and becoming more beautiful.

I, _____________, belong to God.
I am a holy vessel because I house the 
Holy Spirit of the Living God.
The Lord of Heaven and Earth has said over me,
“I declare you holy.”
I commit to start 
believing what He says:
I am holy
Empower me daily, Spirit of the Living God
To treat myself as holy.
Open my eyes to every scheme of the 
enemy to treat me as if I am not.
You, God, are God. 
Your word is truth.
This day, Father, I choose to believe You.
In Jesus’ name,
Amen and Amen.

Wednesday, July 3, 2013

Quick Prayer Request

Hey friends,

I am sitting in chemo infusion on this beautiful, July morning. Mild, sunny and no wind! Matt & I rode our bikes.

I have the coolest bike ever. It was my Mother's Day gift 3 years ago.

We have so very few perfect days in South Dakota, I try to appreciate them to the fullest.

This morning, I met with my oncologist, Dr. Krie, whom I have not seen in 9 weeks. She has a Physician's Assistant, Missy, whom I see when she is not available. I asked once again if we could just skip the last 2 rounds of chemo, but alas, she was just as adamant as Missy that I will go the full 6 rounds, even though when you palpitate the affected area, there are no longer any lumps in my lovely lady humps. Wahoo!

Dr. Krie recommended that I get a plastic surgeon TODAY, and she gave me a short list of names- telling me not to veer from a certain 3 surgeons. I picked one and just made an appointment.

The plan for the next 2 months is currently this:
Meet with Plastic Surgeon. My appointment is next Tuesday. I picked the prettiest one on the short list that Dr. Krie gave me (she also comes highly recommended). Seems like if you're a plastic surgeon, you should look good, don't you think? Her name is Heather Karu, and she actually works at Sanford (the OTHER hospital in Sioux Falls), but plastic surgeons (much like musicians) apparently go where the work is.

That's better than the way I chose our dentists- 
which was because they had the most unusual names, 
but Dr. Skibinski and Dr. Velgersdyk have served us well for 8 years!

Herceptin the next 2 Wednesdays. I bumped up a day this week because of the holiday, and I kind of like that, because after Herceptin infusions, I can go do yoga here at the Prairie Ctr.

Herceptin is one third of my chemo cocktail, the one that targets the HER-2 receptor on my cancer cells (the aggressive one). I get an infusion of this every week for the 6 rounds of chemo, then every 3 weeks for a year. I do not get nasty side effects from Herceptin. No more blackouts after the "big chemo" is over.

I will have a follow-up breast MRI on July 15 to determine how well the neo-adjuvant chemo (pre-surgery) has worked on demolishing the cancer cells. More on my first breast MRI experience here.

They will present me at Breast Conference sometime in there. I don't have to be present for this. I think it would be awkward. It's a meeting where the doctors get together and talk about my boobs.

My last chemo is scheduled now for July 23. I asked if we could bump one day earlier than Wednesday, so I would feel OK for Embrace's Outdoor Service on Sunday, the 28th. They were fine with that! Yay! There is a slight possibility that my platelets will be too low for this treatment and it may have to be delayed a week. See prayer requests below.

Breast surgery will be likely scheduled sometime between the 19th and 30th of August. We have to get the general surgeon and the plastic surgeon's schedules together. I may have to delay the start of the school year a bit if it's toward the end of this date range, but my students will be cool with that, and I will get all their lessons in during the semester. Look at me, rolling with the flow...

So this is my prayer request list:
Platelets:  My platelet levels have been dropping with each round of chemo, and if the are not at 100K, they will have to delay my last treatment, which will delay my surgery date. Before my first treatment, my platelets were at a nice, healthy 300, and today, they were at 129. I just want to get this over with, and be back to "normal" as close to the beginning of the school year as possible.

I asked if there was anything I could eat or do with exercise to raise my own platelets, and she said, no. The only thing that works is prayer. So here you go, prayer warriors! Get on it!

Insurance: I have been very, very blessed to not have paid out of pocket for anything. I received a bill this week that appeared to have been rejected by Medicaid, then the pharmacy wanted me to start paying for drugs that have always been covered before, so I started to worry, but I got my trusty Insurance Advocate, Amber on the line, and she has me all taken care of. I mentioned to her another concern- that when I was accepted into the program, they mentioned that reconstructive surgery is not automatically covered, but she assured me that the surgeon will do all the pre-notification necessary and surgery will be taken care of. Whew!  So... prayer request? I guess Amber was the answer to this one, but really that insurance will come through on this whole thing like they say they will. I'm very thankful for being accepted by Medicaid, and for my Amber. She's awesome. Everyone should have an Amber.

Finances: I have been VERY blessed by the above insurance coverage, and do not want to minimize that at all. I can not fathom how we would possibly recover from the hundreds of thousands of dollars that cancer treatments cost without it! Unfortunately, before I started treatments, I made the decision not to work all summer citing that God would provide, and He has in great and small ways- through His wonderful people. Now you all have seen how energetic I've been, and how good I have felt about 90% of the time this summer, but I really didn't know what to expect, so I didn't do any lessons, and I didn't pursue a summer job.

I sat down and did budget today with my friend, Bev (thanks Bev!) and I have enough in reserve to get us through the next 2 months, due to some very generous gifts, but we are going to come up about $1000 short before my paychecks start coming in again at the end of September. $1000 may not seem like much to you, but it is about 1/3 of our monthly income, so it makes a big difference to us. So this is another area of prayer that I humbly ask for.

Also, I decided to write a book: Due to the overwhelming response to my blog, and multiple suggestions, then reading an article about a guy from church who wrote his family's way out of debt, (unfortunately, money is a strong motivator for me, but not in the traditional, get-a-high-paying-job sense) I decided to take the plunge. I've told you guys and I've told Facebook, so now I have to do it. Prayer request is that I actually follow through. I'm really great at starting things, and then getting distracted and doing other stuff before I finish.

I am starting by using a personal study called "Storyline" by Donald Miller.

This is actually a personal therapy to help you figure out how to live life on purpose, using literary elements of compelling stories. I figure it would be a good idea to include these literary elements not only in my life, but in my book.

I am also reading Bob Goff's "Love Does.

This is a wonderfully written book that is just a series of short vignettes telling compelling little stories about how Bob lives life on purpose, and loves others with a reckless whimsy that is compelling and points others to Jesus. It's a non-fiction book that has kept me quite engaged the whole way through. 

These two authors are very good friends (you'll see Don's name on the front cover of Bob's book), and there is some crossover between the two. Sometimes I have to stop and remember which author I'm reading! 

Anyway, I like the way these guys write, and I think it makes a good springboard for my style of writing.

I have only outlined the first two chapters so far. Everything in me just wants to dive in and start writing stream-of-consiousness style like I blog, but I know I will need structure to make a compelling book. Ah structure...you're a friend and a nemesis! 

Good grief! In the title of my post, I said this would be quick. Way to stick with that! Anyway, now you know what's going on with me. I'm going to hibernate for the next few days, but I'll be back on Monday this time. Really pray for those platelets!