Thursday, April 18, 2013

How Cancer & Chemo Treatments Are Like Being Pregnant

Thanks for checking in! It is +8 days since my first chemo treatment, and here's how it's gone this week.

Day +1: Thursday. Really felt fine. Matt & I were both exhausted after that first infusion- me from the anti-anxiety meds they pumped into me (don't think they're really necessary), and probably from the anti-nausea meds (those did a great job). Matt was exhausted from all the visitors I had during my infusion, forcing him to be an extrovert. We went home and crashed that afternoon, but I didn't feel yucky at all, just tired.

Day +2: Friday. Still on the 3-day round of steroids, had the whole haircut/ wig thing going on. That was a lot of fun. Got that Neulasta shot which did me in for the next 3 1/2 days.

Day +3: Saturday. Useless. Well, mostly. I did teach one lesson, and it was a really good one. I didn't feel 100%, mostly just body aches in a few strange places. Hips, jaw and base of skull.

Day +4: Sunday. Even more useless. I could barely stand up at church, and it was everything I could do to get my body and the kids out the door, then trudge back home afterward. Started to have some gastro-intestinal distress (let's just be polite and call it that instead of, say, "Montezuma's Revenge," shall we?)

Day +5: Monday. Went back to work (I was awesome). My brain felt like I was trying to swim through pudding. I couldn't really read music, I had trouble focusing on anything, and my motivation was super low. More GI distress.

Day +6: Tuesday. Was crabby & whiny, but feeling better. Had an extreme attack of heartburn in the night, jettisoning me out of bed at about 2 am from a very strange dream about how chemo should burn in your chest as you get it (which it doesn't), but that I was sharing it with everyone, as I was forced to dig trenches to help bury the branches from the thousands of broken trees all over our city- and NOT EVEN ALLOWED TO SING ABOUT IT!! (That seemed to be the most frustrating part in my dream! Hahaha!) Anyway, got up and took care of that problem, but it was some extreme pain. I lost my sense of normal taste that day, but physically turned a corner that afternoon, as I was talking to a friend, I noticed that I was peppy again. Neat!

Day +7: More GI distress, making the morning difficult to get started. Otherwise, it was a pretty normal day. I attended a yoga class, got together with a friend to make a plan for arranging meals, shuttled kids around, and even went to Mitchell to play bassoon in a concert that evening.

So that's how my week has been. Did you notice? No vomiting!  While I have not been terribly motivated to do anything, and nothing is terribly appealing to my cardboard palate, I have been eating, and keeping it down. HUGE answer to prayer there!  :)

I can't really tell if my difficulty in getting out of bed in the morning is any different than usual. I would say it's much like normal people must feel without their morning cup of coffee. I just never do real coffee. Maybe I should (except for the GI distress and extreme acid reflux thing).

Anyway. That's how things have been going.

Now, here's a little comparison/ contrast I've been thinking about.

Ways Cancer/ Chemo Treatments Are A Lot Like Being Pregnant:

1. You are hosting a foreign body within your skin.

2. You take a lot of naps.

3. Everything tastes weird, and your sense of smell is heightened.

4. People are really nice to you, bringing you meals and helping out where ever they can.

5. It's hard to stay hydrated enough (might go hand in hand with the sense of taste/ smell).

5. Eventually, it shows and people can tell by looking at you what you're going through- although there are ways to hide it if you want to.

6. Everyone seems to have a story to share. Many of them are scary and you don't want to hear them!

7. It changes your body forever.

8. You never forget you have it. I remember when I was pregnant, I was pregnant in my dreams. This actually seems to be getting better with cancer. I can go a long time thinking about other things and forget that I'm going through this battle (until Montezuma reminds me occasionally).

9. There is an end in sight.

Some Ways They Are Different:

1. No one is envious or happy for you (though they are very positive and supportive).

2. Still have "female issues" to deal with for the time being - which is not fair to have to do both, by the way!

3. Instead of growing long, luxurious hair (sometimes in unwanted places), your hair stops growing, and eventually falls out. I'm counting this as a plus because hey! No swimsuit shaving this summer!

4. No one runs races to fund the "cure" for pregnancy.

5. My boobs will actually be new and improved when all is said and done, instead of post-nursing saggy bags.

6. I don't have to start over as a new mommy when I'm done with chemo treatments! Same old mom. Same old kids. No new babies.

I'm sure you can come up with others! Leave them in the comments.

So Round One is going pretty well. I had about 3 1/2 days of vaguely fluish symptoms. During that time, I will admit, there were a couple of days that I felt like a broken doll, and worried that post-surgery I might look a little like Helena Bonham Carter's Bride of Frankenstein...

Matt assures me that my plastic surgeon will do a much better job than this one.

Sunday, April 14, 2013

The Great Hair/ Wig Adventure

I know you've been waiting with baited breath for the updates on my big haircut... Sorry. I've been laid out flat all weekend, feeling like a mushy bowl of goo. Blech!

Well, here's how it all went down.  I chose my stylist very carefully. Bekah Hauert goes to Embrace Church with us, and her sweet little 6-year-old daugher, Ady is on the final rounds of her chemo treatments. I knew I wanted Bekah to cut my hair from the time I decided to get it done. I haven't had a real haircut from a professional in quite a while, so it was nice to be pampered! Bekah was awesome. She had some great stories to share about Ady's hair loss (that seems weird, but it wasn't), as well as advice about when my hair starts to grow back in, and she kept things fun and light.

I left for my haircut at about noon. KSFY met me there, and filmed my new drastic haircut. Here's some pictures:

Here's the before pics, I guess.

You have to put your hair in a ponytail or braid to donate it.

Here it goes!

There's my hair! Goes to some lucky kid, I guess. :) I was surprised to find out that they only use the donated hair in kids' wigs. So the wig I will get will be a synthetic one. Have to be careful not to melt it!

Bekah even put some pink streaks in and set me up with some hair goop to keep things fun. Here's how it looked the next day (minus the pink streaks, because I was wearing blue):

I like it. Cute, easy and fun. Too bad it will only last a couple of weeks!

After the haircut, I went straight over to the Prairie Center and met with Dell for my wig fitting. I had invited a couple of friends along for that, and Polly didn't even recognize me when I waved to her! 

We had a good time trying out different styles and colors. She said to choose the style first, then we would pick the color from there. We had a little fun!

The girls really liked this one, but the back was a little weird. I wasn't sold on it.

What do you think? Blondie?

My hair actually looked a lot like this for a long time...

Aubrey is clearly not impressed with this one! 
I don't want a long one. I'm going to have it for the summer, 
and I spent all summer last year with my hair in a ponytail! 

This is the one I ended up and picked with the help of Aubrey (left) and (Polly), as well as Dell the wig lady, Mom, and the cameraman! It's a fun little asymmetrical bob.  It will be a slightly lighter color for the summer season. 

After all the ruckus, I sent the paparazzi home and my mom & I went up to the oncology unit, where they gave me a shot called Neulasta, which they give within 24 hours of chemo. Wow, not a fan. It tells your bones to produce white cells to make up for the drop in immunity chemo does to you. Sadly, one of the side effects is that your bones get pretty achy. Within hours, I was a pooped pup, but we were able to get together with my dad & step-mother to celebrate her birthday for a nice dinner at Red Lobster, and a little swim time for the kids at their hotel.

I was a yucky, mushy mess for the next 2 days. My Saturday and Sunday were pretty rough. I felt the aches mostly in my hips, lower molars and at the base of my skull on Saturday. By this morning (Sunday), it was all I could do to get up and out of bed to get the kids and me to church that morning. I have been eating well, however, and the nausea has not set in, so that is a huge blessing! 

I did get a migraine aura this evening, so I took a couple of Tylenol and had a cup of coffee. Avoided the headache, which is good. The hope was that with all the estrogen blocking chemo provides, I would get to drop the migraines... We'll have to see, I guess.

I am planning to go back to work tomorrow, and am thankful that my students are pretty gracious. I'm feeling better at bedtime tonight (Sunday), so I'm hopeful that tomorrow will be a good day... Prayers appreciated!

Thursday, April 11, 2013

Chemo- Day #1

And it begins in earnest. I had a bit of a restless night, due to the steroids they put me on the day before treatment, the day of, and the day after, but no complaints about them! I have plenty of energy, and a whoppin' big appetite!

They seem harmless enough...

What is the deal, by the way? I have woken up before my alarm like some kind of morning person every day this week! I do not anticipate this lasting. Of course, going to bed between 8:30 or 9 instead of 10:30 or 11 will do that to a body, I guess.

This is not a complaint about our crazy April ice storm, but for documentation purposes, this is what it looked like out my bedroom window this morning:

Frozen rain for 24 hours, followed by a heavy, wet snowfall meant no 
school for the kids 3 days in a row! A very rare occurrence in SD!

I got up with all my energy and hunger, made myself my standard morning protein smoothie with kale, greek yogurt, bananas, peanut butter, coconut milk and protein powder, took my morning steroid pills, then hopped on the bike (on the trainer in the living room), and pedaled my way through an episode of "Arrested Development." Yes, we are considering getting Netflix for the summer, just so we can watch the new stuff coming out in May!

I took a shower, put on my makeup and decided to curl my hair so it would look fabulous for my last day of long, lovely locks.

Many people have asked about the plans for my hair. I have had multiple suggestions:

  1. Try and preserve it through a plan called The Rapunzel Project, where you wear a special frozen cold cap on your head and treat your hair with extra, extra care and maybe you won't loose it. We do not have the structure for this plan currently in place in our city, and the special freezers to store the caps would take some major financing to achieve. Something to look into for future patients, though!
  2. Allow my children to buzz cut my hair. - Um, no.
  3. Allow anyone to buzz cut my hair. Again, no.
  4. I did have a fleeting thought of trying to recreate Anne Hathaway's scene from Les Misérables, and sing "I Dreamed A Dream" in anguish, then make a video to combat human trafficking. My friend Polly would totally go for that! 

Unfortunately, I know me, and while I ROCK that song, I have a feeling that my goofball nature would turn it into a total parody and the seriousness of the moment would be totally overshadowed by my Weird Al- style presentation of it. Also, I just can't bring myself to that point of sadness. I don't feel it's healthy for me right now. And when I get into a character, I REALLY get into the character.

So the most sensible option seems to be to donate it before it gets too thin to be useable (and also before it destroys my already slow-flowing bathtub drain). I am going to have a gal from our church cut it. She is a stylist, and her daughter is fighting through childhood cancer right now. On her second-to-last round of chemo today, actually. Little Ady (now age 6. Diagnosed at 4) and her family have been through so much, and are a stronger and more beautiful family because of it.

Ady in red, boogying down at our church's outdoor service this summer.

Anyway, Bekah, Ady's mom is going to cut my hair into a sweet little pixy cut tomorrow. My mom is coming with to the haircut (and there may or may not be a Les Mis soundtrack either live or running through my head), then in the afternoon, I'm going for my wig fitting with a spunky lady named Del at the Prairie Center. She came up and met with me on Tuesday, and warned me that sometimes that first time looking at the wigs is traumatic, and I may not want the news crew following me in. I told her that I'm pretty much ready for a change, and want to see the funkier of her selections. This is going to be a riot, and I'm bringing girlfriends along to help me choose. "No tears from me, I promise! We're going to have a lot of fun!"

My mom has declared that if I choose something really weird, she might have to get one as a disguise to be seen around me.  (Challenge accepted!)

Back to today...

Shortly after I got my hair all curled, and donned my spiffy new t-shirt,

Made it myself. Thank you, Hobby Lobby iron-on letters.

we packed up a lot of gear to keep me entertained, and headed over to get my port accessed for the first time in the lab. They had given me some Lidocaine cream at the pharmacy to numb the area about a half hour before they accessed the port. I did it only 15 minutes before, and didn't cover it with Saran Wrap because no one told me to, so it didn't completely do the trick, but it wasn't too bad, given how tender the area is, since I just had the thing put in there on Monday. The purpose of the port became very obvious, as I would have had to have multiple IV's run during the course of treatment. There is only a small needle poke one time per visit with the port and they leave it in until I'm done for the day.

I asked for a table, pulled out my sewing machine and got to work making a cover for the shoe box housing all my meds and supplements. It makes me happier to have them in a pretty box. This is how it eventually turned out.

Not my best work, but I couldn't find a template online. 
Oh well, better than a boring old shoe box!

I had sent out a plea to some of my friends last night when I realized that I would be trapped in a room by myself (well, with Matt) for several hours, and desperately asked for some company from a few of my besties. I got visits from Aubrey, Callie, Stacy, Aaron & Jillian, Denise & Candace throughout the course of the morning. It was nice to sit and chat with friends. As Callie said, it shouldn't take a life event like this to get us to slow down and invest in our friendships. So true! I will call on others to chill with me both during treatments, and on low-energy days. But they have to not look at me all "yucky" like Aubrey did half the time. Apparently, she does not handle bruises or scars well.

I stayed very well-hydrated through the treatments (of course, the multiple bags of fluid they pumped into me helped, and had to take my IV pole, Tim

He looks like a Tim, don't you think? Wait 'til you see Wall-E!

down to the bathroom 3 or 4 times. In the process, I discovered that one of the ladies I had encountered on Tuesday (see Snow Day), Gina- the one I prayed for, was right next door!  I wish I could say I popped in to say hello and see how she was doing, but I didn't. I kept thinking I would have plenty of opportunities, but the next time I passed by, she had a friend with her, and then she was gone... to be replaced by some fat old man drinking a big gulp of Mountain Dew with his infusion, who turned his TV on too loud! (geesh! Neighbors!)

Somedays you hear and obey, other days, you miss your opportunity.

Today's infusion included saline, 2 anti-nausea meds, then they started the chemo. First Taxotere (T), then Carboplatin (C), then Herceptin (H). This is the cocktail I will get every third Thursday for the next 18 weeks. 6 rounds, and I'm done with the big ones. The Herceptin will also be administered on the 2nd and 3rd weeks, but only takes an hour, and does not have as much nausea side effects of the T or the C. After the first 6 rounds of the "Big Chemo," I will get Herceptin every 3 weeks for a year. This is the targeted therapy that they say will just melt away the tumor, and tells my immune system to attack the cancer cells.

One of the last things they added to my cocktail was an anti-anxiety med (Ativan) to keep me from getting myself all worked up. It certainly counteracted the steroids for a while! I got pretty sleepy and boring right as my guests were leaving, and as we left the hospital. Matt & I ran to the grocery store, and got a handful of things, checked on Maia, who opted to stay a second night with her friend if she could get a change of pajamas, then headed home. Both Matt & I crashed on the couch for a while. Matt from the exhaustion of having to be an extrovert all morning, and me from the meds.

When I woke up an hour and a half later, Matt was outside scooping the front walk. Thankfully, the city had plowed our street, but of course, that means it's hard to get in and out of the driveway. We are very thankful to Rob Fitzgerald, who's wife, Amber volunteered him to snowblow us out tonight!  I told him to get what he could get. It's April 11, it's going to be melted soon anyway! Meanwhile, my neighbors are stuck in the end of their driveway... And they don't even own a shovel. Rob went over and did their driveway after doing ours.  There are some really good people in this world. Thanks, Rob!

I woke up hungry (yey!) so I took the opportunity to make an amazing meal that tasted great.

Coconut- lime chicken, with a "spring" roll mix (didn't firm up very 
well because I've never made sushi) consisting of coconut sticky 
rice, spinach, green onions, carrots, avocado and pickled ginger 
over everything (the inspiration for the meal)

Ginger is supposed to be good for fighting nausea, so I thought this would help me get a jump start!

Our dear friend Sara, showed up with a gallon of milk and for a short visit. I hope to see more of her this summer!

Matt had worship team rehearsal tonight. I was supposed to play on the team this Sunday morning, but they say that's when the world will come crashing down on me, and my energy will go south, so I backed out of playing the 3 morning services this weekend. I will play for the evening service next Sunday. I'd hate to skip out altogether. I love being on the worship team at Embrace. I will probably stick to the 605 service through the summer, as it is a more mellow atmosphere, and much less of a time commitment.

Don't worry, I'm not taking on more than I can handle. As a matter of fact, I have created 20 teams to help with various areas of my life including: meals, cleaning, gardening, fitness, nutrition/ anti-nausea/ comfort, budget, style, prayer, protection (keeping me from saying yes to things), fundraising, taking care of the kids, taking care of Matt, Garage Sale & Garage Reorganization project, Thank You notes, Productions (hoping and praying that I can still play Pinocchio in our Fairy Tale Opera in the park this summer), swimming pals, carpet replacement and furniture moving project and recommended reading lists.

Here is what I've discovered. Everyone wants to help. So this is what an extrovert with leadership tendencies does to get people mobilized!  I started thinking about all the things I do, and might need help with this summer, and came up with an entire organization. Of course, a lot of these things are only things you can do if you are close by, and/or an actual friend.  I have a lot of people who read my blog from all over the world (thank you!), or who only know me through someone else, or whom I haven't had contact with in years. That's fine! I appreciate your prayer support! Please keep up with my story, and share it! I am fine with that.

Well, that's all for today. Tomorrow is the big hair day. I'll post pictures.

Tuesday, April 9, 2013

Snow Day

Yes, on April 9. We are in the midst of a severe ice storm, and it looks like it's only going to get worse through the rest of the day and overnight.

Mom & I made it to the cancer center for my chemo education session and wig fitting, but alas, they were running on emergency power, and rescheduling all appointments because the computer network was down.

Got me all rescheduled for the chemo ed. tomorrow morning, and my wig appointment will actually be after my haircut on Friday.  No big deal.  Mom did take advantage of a slight lull in the storm to head back home and will come back on Thursday for chemo.

When the wig lady stopped by to reschedule me (she came and found me, which I thought was pretty cool), we talked a little about the options. She noticed my long locks, and said they had some pretty, long options for "younger gals like you."  :)  I said I was ready for a change and want something short and funky, she said that she has plenty of fun styles to choose from. I told her I'm an actress, and he got the picture pretty quick!  My mom wants to go along so that in case I choose something ridiculous (What? Me? Never!), she can also get one to disguise her identity!

So, here's something neat that happened while we were sitting in the waiting area. Mom made a phone call, and the lady next to me overheard that we were just getting started in the whole process. She has all the same markers as me, and just finished her 6th round of the hard stuff, now it's on to the Herceptin (monthly infusions for a year), which is much easier. She was wearing a wig that looked very natural (I wouldn't have known if she hadn't told me), and was really encouraging. Told me a couple of things to look out for, your scalp can get irritated, there's a prescription cream for that, and don't just suffer through the mouth sores- there's a prescription mouthwash for that.  Also, be aware that you get a "chemo baby."  A little fat round tummy. (Have to go shopping for fat clothes. DISLIKE). She was very peaceful, and said, "You're going to get through this just fine."  It was a nice little gift to meet her.

After she left, another woman stopped by, wearing a head scarf with bandages underneath. She clearly had been much more ravaged by the disease (or rather, the treatment) than the first lady, but she had a wonderful attitude. I asked her where she was in the process, and she cheerfully said, "Oh honey, I'm Stage 4. I was almost at the 5 year mark, when they found it again. It's in my bones and all my major organs. I will have it for the rest of my life."  Not a stitch of self-pity in this woman. I felt just awful for her, but kept my attitude positive as we talked. She knows everyone there, of course, and is so friendly and chipper, but I couldn't just get up and leave so I asked if I could pray for her before we said good-bye. She said, "You're good at that!"  I told her I practice a lot.  It was a beautiful chance to get to be an encouragement to someone else for a change. Her name is Gina and if you would like to pray for her, she would really love that.

I don't think either of those ladies was a chance encounter. Thank you, Lord for pouring out your blessings, so that we can in turn pour them out on others.

This is Really Happening

I guess if you're going to fight back against cancer, at some point, you have to start treatments.  I took step one today down this path which I never desired to go.  No turning back now (not that I ever really had that option).

I awoke bright and early, cleaned up and did NOT put on makeup because they said you can't wear makeup into surgery. (Don't they know that I'm going to be on TV?!) So the first time I will appear on  camera, I had no makeup on.  Geesh! Mark Roper from KSFY showed up at my door right before Matt, Xander and I were about to leave, and did a quick interview with me, asking how this all started, how I discovered the lump, and what step we were taking today.

At least my hair and pajama pants looked good!

I am not sure that he knew what to make of me. He is uncomfortable about cancer. Everyone is. When I joke around about it, he squirms a little. I noticed this right away, and said that one of the things I hope to accomplish by this footage is to abolish the fear that this disease holds on our world. I have no fear of cancer. Yes, it can be a deadly disease, but I have 2 big things in my favor: I have a God that is way bigger than any illness, and good grief! Look how far the research has come over the years!

God's peace is the reason I can still be me. I do not have to be defined by being a "cancer" mom. You'll notice that cancer never gets a capital C in my world. It does not hold that much power over me. I spend a lot of time in God's Word daily, doing multiple morning and evening devotions, and soaking Him in. I have an assurance that no matter what happens, He holds me in the palm of His hand. I am fearfully and wonderfully made, and this was not a surprise to God. NO, it was not his will for me to get sick- I believe that God created us to be whole, and perfect and beautiful. He is the healer of our diseases. Look at what Jesus did when He came to live among us! He healed people over and over. It demonstrates His great power, and it shows His perfect love for us.

Unfortunately, this world is broken. It is so far from the paradise that He created for us. There are multiple evidences that point to our poor nutritional habits and environmental factors as the causes of not only cancer, but heart disease, diabetes, and other fatal illnesses. Somehow, we've brought this on ourselves.  This old world has been in a steady decline since the Fall of Man.

No one can tell me what caused me to develop this tumor. But I know that God will absolutely use me to glorify Him as I walk this road to healing.

And I trust my doctors. There is not a shadow of a doubt in my mind that their ultimate goal is to boot me out the door, completely cancer-free in seven years. I have read the research, I have seen the speculation that says drug companies control the medical industry. They don't want us to avoid cancer, they just want us to get treatment because they make money on us that way. I can't say I disagree, but I also can't doubt the hearts of people like my childhood friend Kelly, who survived cancer while she was in high school, and is now some kind of crazy-smart researcher at the University of Alabama-Birmingham. I can't doubt the heart of my surgeon, who got cornered at church by my nurse friend (another childhood buddy), Renee' who threatened him with bodily harm if he didn't take care of me. And I trust my oncologist, who lays it out on the line, is very down-to earth, and yet compassionate enough to know that this is not an easy thing for anyone to go through- and we all want options. No one WANTS to do chemo. Duh!

Anyway, back to my day. Today's surgery was to insert a port under my left clavicle so that blood can be drawn and medications administered through it instead of having to wreck my veins. (see previous post)

The news guys followed me around the house as we were getting ready to leave (Maia missed the footage because school starts an hour earlier for her, and she was already gone). They kept the mic turned on after the interview portion because, "and don't take this the wrong way- you're very entertaining." Maybe that will draw attention away from the fact that I didn't bother to clean my kitchen. (That and the no makeup thing makes me more down-to-earth and approachable, right?  Right?)

They filmed us getting into the car, and the boys dropping me off at the surgery center. Matt then took Xander to school, and returned. My mom was coming in from Yankton, but it was pretty foggy, so she wasn't there to greet us. The volunteer at the front door was not sure what to make of me and my camera crew. Doesn't everyone show up for surgery with their own media entourage? I was also met by a representative from the hospital's PR department, who will make sure that both the hospital and I are treated with respect by the news crew.

I checked in, and was ushered to room 9 (Matt & Mom showed up shortly thereafter), they took my vitals, explained what was going on, etc. There was a lot of waiting around. Of course, you don't get to eat before surgery, so I was hungry, but they did start an IV, so I had to go to the bathroom before I went in to the operation. They walked me into the OR, I hopped up on the table, then things finally starting moving along- at kind of a dizzying pace.

I couldn't see, for one thing. I had left my glasses behind in my little room. I could tell that the big lights over the operating table were really funky, that the doc and nurses all wore those lead capes (they do a chest X-ray to make sure they got the port in the right place) and the surgeon's apron was camouflage- I remarked on that. What was he hiding from?! The nurses strapped these sleeves to my legs that alternately pumped up to keep the blood flowing in my legs and prevent clotting, and they strapped my arms down at my sides. I was given several warm blankets because it's always cold in an OR, and this was no exception.

The nurse anesthetist, Paul, was this nice, grandfatherly man who rides his bike to work every day, rain or shine, wind or snow. I learned where the bike rack is (so I can park next to him when it finally gets nice enough for me to ride over for treatments), and we talked bikes for a while. A machine beeped two notes, and I said, "Perfect fourth." He cleverly noted that I must be a musician, and started asking me about key signatures.

I groggily said, "Do you mind if I pray for you guys before we get started?" and launched into a prayer for my surgical team. When I finished, Paul said, "That was really sweet, honey, but we're already done."

That's some powerful stuff that Paul was pumping into me! Hahaha!

It's true. He lulled me into sleep by talking about key signatures, and before I knew it, they were all done and I was in recovery.

Once I woke up, I was awake. I did not drift in and out of sleep. My scalp was itchy, which everyone seemed to think was a little odd. That went away before long, they got me a drink of ice water, and I just sat around looking at the blurry images around me. The woman behind the curtain next to me was in a lot of pain (8 on the pain scale, according to her), so I prayed for her for a while. Then they wheeled me back to my little room 9.

Matt had to leave for a lunch appointment, so it was just me and mom in my room as I sat around and waited for them to let me go. I was really alert, and felt fine. The incision site was pretty sore, and I am glad that I found someone else to play piano for my students at recital that afternoon- though I did attend. They did great, in case you were wondering.

After leaving the surgery center, Mom & I went to Hobby Lobby (I gave her a sewing project to work on that afternoon), stopped at Juice Stop for a liquid lunch for me- not mandatory, just what I felt like having), and Bagel Boy for a sandwich for her, then to the pharmacy for my pain meds and back home.  We puttered around for a couple of hours working on our little projects (I got my t-shirt for the breast cancer run done), then headed over to USF to hear my students sing at our weekly student recital hour.

The weather forecast was not looking good, so Mom & Maia ran to Shopko to get overnight supplies for Mom (and new shoes for Maia- that girl knows how to work the system.... she might have figured that out by watching me), then back home again.

I had cancelled my evening lessons (I think. Nobody showed up, anyway), and my friend Jennifer brought us dinner. I enjoyed a chicken fajita salad for supper, and we all went to bed early. The kids have STEP tests this week, and I was pooped by 8:30!

*Update.* I slept well, and woke up early. The pain is certainly manageable, and I'm looking forward to a great day. Chemo education starts at 8:30, then I get to do a wig consultation. I've invited the news crew and my friend Polly along for the wig thing. I hope it's as fun as I anticipate it being. Of course it will be! Polly's coming along!

The weather is really pretty nasty. Freezing rain, turning to snow later today. Hoping that Mom can make it home safely, as she didn't bring her blood pressure medication with her.

Saturday, April 6, 2013

Reality Show?

OK, things are about to get kind of crazy around here.

Here's how it all started. I got cancer. I blogged about it. I shared that blog on Facebook, and emailed a few friends and family. They shared my blog, and started sharing my story with others who are joining in the battle. Within the first two weeks, I had over 5,000 hits. And you have to have the address to find it. You won't find it by googling "cancer blogs" or anything.

So that's weird. And sweet, really. I love knowing how many people are affected by my words and following my story.

One night, I got a FB message from a high school classmate (James Jansma), who is a cameraman for KSFY, a local news affiliate. He is not much for words (hence the behind the camera work), but it appeared to me that he was really moved by my first blog entry, and when the KSFY peeps were sitting around trying to come up with human interest stories or something, he might have mentioned this blog. He asked if I would be interested in having KSFY sort of document my story. He promised they would be nice, and gave me a reporter's number.

I called a couple of days later, and left a voice mail, and didn't hear back for about a week, so I figured they had decided not to do the story. No skin off my nose! I've got bigger fish to fry right now!

But yesterday, I got a call from Mark Roper (whom I'm about to get to know pretty well, it seems), and he wanted to know what kind of treatment activities I would be doing next week. Interestingly, that's when the "fun" begins.

So the news is going to coming to my port placement operation on Monday, my wig consultation on Tuesday, my first round of chemo on Thursday, and possibly even my haircut on Friday.

The PR people at Avera will make sure that I have a Patient Advocate added to my team to protect my dignity and whatnot. The cameras will not follow me 24/7 (I don't really think I'm that interesting), but will touch on peak moments of my treatment. And while I will not shy away from showing the harder parts of treatment, if I don't feel like being on camera, I won't.

Back to port placement on Monday. Here's a good description of a port from Avera's Be A Survivor website:

A port consists of a tube (catheter), attached to a dome-shaped chamber.  The device is surgically implanted under the skin, with the dome placed in the chest or arm, where it will be easily accessible for injections through a needle.  The catheter is threaded into a large vein, where rapid blood flow will dilute the drug, and keep it from damaging the lining of the vein.  The whole device will be completely covered by skin, so it will not interfere with your activities.  You can swim, bathe and exercise freely.
Ports can also be used for drawing blood, thus avoiding needle sticks of the arms during clinic visits.

So, I'm having this thing implanted on Monday morning. They assure me it's not a big deal of a surgery. It will be located about 3 inches below my left collarbone. I've been told to mention that my neckline would like to be preserved with minimal scarring, because I wear a lot of fancy dresses. :)

I will not go under general anesthesia (so no intubation, which I like because of less risk to the vocal cords), but they will use a local and put me in "twilight sleep."
Watch me sparkle!

Anyone who knows me even a little knows that I'll probably talk through the entire surgery. Poor surgical team!

Wednesday, April 3, 2013


I feel as if I have been put on a very small boat, and set on a river against my will. I did not choose this boat, this river or the destination, but I must go. I have no choice. I am the only one in the boat, though I sense God's nearness with every movement of the current. I can see thousands of friends and family cheering me on from the shores. Some are also in boats of their own, and I cheer them on their own journey, which looks different than mine. My family walks along the banks, never losing sight of me. Reaching out and holding my hand when they can. The river seems so small at first. Very calm, I can hear the roars of love and encouragement from the shores. It's actually very pleasant. But up ahead are rough waters. Living waters. Scary waters. There are many hidden dangers. Others who have been studying this river for years are guiding my little boat, and I have to trust that what they say is true. I have one little paddle. It's not strong enough to turn my boat around and paddle against the current. All it can do is act as a rudder and point me continuously toward the Light. There is hope at the destination. There is healing. There will even be joy in the journey, if I have eyes to see. 

So, I don't think I'm going to get to be as granola about this as I would like to be. In the last week, I have had time to come to grips with the fact that like millions of other survivors out there, I am going to have to suffer before this is all over. I had kind of hoped that I could skip over the suffering part of this journey, but due to the aggressive nature of a HER-2 receptor on my cancer cells, that seems like it's not an option.

Today was a long day for me. Fortunately, it was a day I don't normally teach many lessons, and didn't have to miss any. I started out by going to the hospital at about 7 am to have a breast MRI. That was weird. I lay facedown on a pretty cushy table, with two holes cut out for the area in question to hang down through. They put me in position, put headphones on me (I had given them my iPod filled with music I like), then told me not to move. It wasn't scary or anything, but it did seem pretty surreal. Kind of like 2001: A Space Oddessy. Everything in the room was white, I was rolled into a big white chamber, then over the soothing sounds of Gungor, Nora Jones, Nichole Nordeman, Owl City, and John Mayer, I heard these amusing laser beam sounds. I swear, it was like being shot at by fake lasers on Lost in Space. Like I was on a really lame Disney World ride or something. Then they told me they were putting the dye into my veins, and I could feel it pool right at my clavicle. Thought I could almost swallow it. I started to imagine that my teeth were glowing and my breasts were a multi-colored map of veins. Probably nothing in reality like what really happened, but I have a pretty active imagination...

After a half hour of that, I had some pretty awesome pillow marks on my face:

Next, I went over to the Prairie Center, and got another ultrasound done. These two tests were checking to make sure that none of my lymph nodes or other breast tissue was effected. I was pleasantly surprised to see a familiar face from Mercy Church, Josie,  as my Radiation Tech expert lady. (I'm sure that's what it says on her name tag.) She was very meticulous in making sure that what Chris, the ultrasound tech, was documenting was meeting up with what she was already studying from the MRI results.  (Amazing, the integrated technology of this place!)

Josie and Chris were both very encouraging that there was no lymph node activity.  VERY GOOD NEWS!

After that, I went down to the lobby, and met my mom and Matt, who went with me to meet Dr. Krie, my oncologist. Up until this point, I have been around all normal people. Well, normal people who are in the hospital for one reason or another, or women getting their yearly mammograms. Walking into the oncology waiting room is like landing on a different planet. (I did have the best hair there.) There is courage in that waiting room. A defiance of this disease. And hope. There are newbies like me, and men and women who are nearing the point where they can add their signature to the Survivor Wall, and everything in between. It's a little unsettling.

Meeting with Dr. Krie was good. I only teared up once! I'm getting so tough! :) ( It's her fault, she asked me how I felt about chemo. She should have known better.) She is about my age, very down-to-earth, and obviously intelligent and good at what she does. She carefully and patiently explained what my cancer looks like, and what my treatment options are. I will not bore you with the details of all this, because I would not be able to explain it very well, but she gave me 2 chemo options, and I chose the less scary one (TCH- Taxotere/ Carboplatin/ Herceptin for those in the know). It's got a slightly lower "survival" rate (meaning NO cancer in 7 years), at 90% vs. 93% on the other course of treatment (ACH).

Let's talk about "survival" for a second. I told her 7 years is not good enough for me. And she explained that I will be trading one year of misery (really only a few months), and after one year the injections will be done, and they will continue to screen me. Once I am clear of this cancer for 7 years, it's not coming back. So after the 7th year, we'll have a Year of Jubilee!!! Until then, there is always that dread.

Some of the advantages of this chemo regimen include that it's easier (easier is good), less dangerous for my heart, and less risk of a leukemia complication. The other regimen has a slightly higher success rate, but is harder, a higher rate of neuropathy (coming back to this), higher risk to the heart and that rare leukemia thing.

I think that the power of the thousands of you praying for me will overcome this success rate difference. I have no fear in taking the "easier" route. Especially because of the neuropathy thing. Neuropathy is permanent nerve damage. Particularly in the fingers. I'm no expert, but when one spends a tremendous amount of time making a living and finding great joy in playing piano, permanent nerve damage in the fingers sounds like a bad thing. Dr. Krie has not worked with classically trained singers before, and is not aware of damage to the vocal cords, but these two things are very important to me, and I would really appreciate your prayers about them.  In short- NO NERVE DAMAGE.

Two other things that will happen. I will lose my hair, and I will go into early menopause. It may be temporary (the menopause. Obviously, the hair loss is temporary). I'm not sure how all that works, but I'm very fortunate that my ever-patient husband will love me through that rocky journey of hot flashes and all the accompanying side effects. Maybe twice. She says I'm going to gain 10-20 lbs. That just doesn't seem right. The only time I ever gained that much weight was when I had babies. We'll just have to see... (determined to not get "matronly.")

So here's the plan. It is scary, but good to know what's coming.

I am starting chemo next week.

Monday, I will go in to have my port put in. This is a short, outpatient procedure. I will be sedated, but it's a light sedation that does not involve intubation (my vocal cords thank them!). I will have to miss work. I have several students scheduled for recital Monday afternoon. :/

Tuesday, I will meet with the chemo teachers. They will explain what will happen during the process. I will also meet with the wig lady. (This could be fun)

Thursday, I will check in at oncology and meet with Dr. Krie, then go to the infusion center and sit around for 3-4 hours while they pump poison into my veins. I am told that I will feel pretty good that day, and the day after. Then I'll feel like crap over the weekend. I'm supposed to play for church that Sunday. Might not be able to. :(

I will have this chemo treatment every 3 weeks until July 25. Then I will recover for a few weeks, and around August 15, I will have my surgery. I am opting for a double mastectomy with reconstruction. I may be fearfully and wonderfully made, but I'm going to be new and improved by the time this is all over!

The reason we are starting so suddenly is so that I can still go to St. Louis with Xander's Lego League team at the end of April. I will have a weekend of blech after each infusion, and the week before I go back is supposed to be a "feel good" week. Unfortunately, during this first round, it will also be the week I lose my hair. I'm going to blame the middle schoolers we're traveling with.

This will also set me up to be able to be back teaching again shortly after Labor Day, so I shouldn't have to miss a semester.

Dr. Krie was interested to know whether I had severe morning sickness with either child (yes), do I drink alcohol (yes, but I don't have to), and do I get carsick (sometimes). These three things seem to indicate that I will be nauseous from the chemo, so she said, "We'll be really aggressive with the anti-nausea meds." (Another area of prayer. I really hate barfing. Who doesn't?)

After this draining appointment, Mom, Matt & I went and had lunch in the cafe on the main floor of the Prairie Center, then Matt went to drive carpool, and I went back up for a quick chest x-ray, where two high schoolers (I swear!) took my pictures. That was really quick, and I was able to sweet talk my mom into taking me shopping for new workout shoes.
I told Mom that retail therapy might need to be a part of my regimen...

The only two things I have any control over during my treatment are my diet and my workout regimen. I have been prescribed 30 minutes of daily exercise. I have never been too good at sticking with a workout plan, but I've made changes to my diet, I have faith that I can do this too. Plus, I might have also acquired a new bike jersey today that matches my sweet new ride:
Now, if the weather would only cooperate!

I have also cut sugars, grains and processed foods from my diet. Lots of fruits, veggies, lean meats, beans, and limited dairy. Dr. Krie was VERY supportive of my new diet, and I have to say, I feel great.  You know, until they start dumping poison into me.

OK, one more story before I close this chapter. On Wednesday, I ran across a link from a friend on Face Book, of a local hairstylist, who needed adult female models with shoulder length or longer hair to do a photo shoot of her updo hairstyles. I wrote her quick and said, "Not to play the sympathy card or anything, but I was recently diagnosed with cancer, and will be loosing my lovely locks soon. Can I be in your photo shoot?"  She agreed, so on Wednesday afternoon, the day before chemo begins, I will be doing a modeling session. It will be nice to have professional quality photos of my awesome hair before it is gone. Kind of a nice little blessing.