Friday, October 25, 2013

Done Expanding

*WARNING: This blog post is all about boobs. My boobs specifically. And not in the sexy way. It may fall into the category of Too Much Information for you. Don't say I didn't warn you.

Yesterday, I had my last appointment with my plastic surgeon for the purposes of expansion. I have decided I don't need to go overboard with these things. A nice B-cup is fine with me. I've said all along, I just want to be the size I've always pretended to be- thanks to really padded bras.

OK, so here's some information about expanders that I didn't really know going in:

They are not natural. Well, duh.  But they don't look or feel natural at all. They are hard like baseballs (you'll notice if you hug me too tight), they don't move AT ALL, and they sort of look like they were stuck on my chest like Play-Dough lumps.

They are spaced far apart. They really feel like they're sitting in my armpits. My doc says that is intentional, so that you don't accidentally end up with a "uni-boob." Assuming that means that the muscle over the sternum might pop out to the same place as the intentionally expanded pectoral muscles (remember that the expanders go BEHIND the pectoral wall). The wide-placement of them does make it uncomfortable to sleep on my side.

They don't move. Did I mention that? I can jog, jump on a trampoline, or run up and down the stairs (all theoretically- I don't really do any of those things), and these puppies wouldn't move at all. No bra needed. So that's something.

They are uncomfortable. The expansion process goes like this: once a week, I go into the surgeon's clinic, she locates the magnetic port with this little doo-hickie, then pokes a rather large-bore needle attached to some tubing, a saline bag & a large syringe into my already numb skin. I have not felt the needle poke at all, due to the damaged nerves from the surgery. Then she pushes in the saline. She had said originally that they would start small- 25 cc's and work up to about 50 or possibly even 100 cc's at a time. I discovered that 40 cc's was too much after two rather uncomfortable weeks in a row, so we backed it down to 25, which was apparently my magic number. I was on a mild muscle relaxant and some pain-killers for the whole process, which took about 6 weeks. Happy to be done with all those drugs as of yesterday.

They look weird. Did you know that the mastectomy scar goes right across the middle line of the breast? The nipple no longer exists. They make a football-shaped incision around the nipple, then dig out all the breast tissue (I envision a small ice cream scoop. I'm probably wrong), place the expander in roughly the same place, but behind the muscles, then sew it up, or glue it together or whatever- there are no visible stitch marks. They kind of look like they're sleeping. I call them my Sleeping Giants. I was concerned about possible stretch marks due to the rapid shape change. The doc assured me that I would probably not get them, but I did. Mostly right near the center of the incision where they had to pull that skin up tighter to create that straight line. (I'm not showing you a picture of this. You're welcome.) They also are lumped on the chest like big blobs of clay. Not terribly graceful at this point. My shirts keep slipping up and sitting on top of the shelf they create.

Well, now they don't look that impressive. 
Maybe I should keep expanding...

Plus, there is a tendon or something that goes from the top of your armpit down to your chest, which is now anchored on top of my breast instead of behind it. So when I reach forward, I get this weird stringy triangle thing that looks pretty freakish because I'm already so bony.

Ick, maybe don't stand like that.

Haha! I tried to get a better picture of this:
Eew! Freakshow! 
I look all muscle-bound or something! 
Trust me, I'm not.

They may expand differently. Mine are not symmetrical. The left one expanded out flatter and wider, and the right one expanded out forward. It's not really obvious to the casual observer (and most people are too polite to even look at all), but it's obvious to me, my husband and my plastic surgeon!

These things are all temporary. I have been told that all these things are just a part of the process, and the real implants will look and feel natural, be movable, I will be able to smoosh them together and make cleavage (for the first time in my life!), and they will be much more symmetrical when all is said and done. The next step after the implant surgery is tattooing. That's right. They tattoo the nipple and aureola back on (again, no pictures). You can elect to have a artificial nipple inserted, but I don't think I want that. We spend our whole lives trying to cover that up! The 3-D tattoo will be fine for me.

So that's about it for now. I will have the implant surgery in January, while I'm off work for J-term. She said I should plan for a couple of weeks off at least- or half the time I took off for the last surgery.

"How much time did you take off last time?"

"Two weeks. I know you recommended 4-6, but healing is boring. I would have gone nuts." She laughed and confessed that after her c-section, she was back in the office doing expansions the next week. Just brought the baby along. At least she understands my need to keep moving. I don't anticipate this part to be that big of a deal. Maybe I'm wrong. I'll let you know afterward. :)

In non-boob related news, I have this much hair:

Should be able to go wig-free by my birthday next month. 
Wonder if I will have enough hair to hold my birthday tiara in place? 
It still looks like I have an abnormally small head, and it's really cold to go without covering.

Also, I have tiny little eyelashes growing in to fill in the bald spots along my lash lines.
OK, you can't see them, but they're there. 
Right along the bottom outer edge. 
Just trust me on this one.

I'm looking forward to Halloween simply because it means costumes! (No scary stuff at our house) Maia's Fall Festival is tonight at the elementary school. I may have to finally wear that blonde beehive out in public.  In other words, life is very much back to normal around here! 

Wednesday, September 18, 2013

I'm A Survivor!

Just wanted to post a quick update. I saw my surgeon for a follow-up appointment this afternoon, and it is official- NO RADIATION! I had kind of deduced that from one conversation I had with my oncologist's scheduler, who was at the conference where the doctors all discussed it, but I never heard back from the doc. What a weight lifted! I didn't know I was still worried about it until I heard him say for sure.  My stomach leaped and my shoulders released. I think I laughed out loud.  Dr. Dosch said, "You've done great!" I said, "I know!!!"

I feel like I'm over the treatment phase and firmly in the recovery phase. I finally feel like I can truly say,

"I am a cancer survivor." 

My body knows it too. I have stopped breaking down and I'm building back up. The first thing to return to normalcy was my mouth. About 2 weeks after my last chemo treatment, I had my taste buds back. It happened between each of my 6 treatments, so that one didn't surprise me. I had watery eyes and twitchy eyelids for about 6 weeks, and that went away after my surgery. I guess I finally got enough sleep or something! It's nice to no longer have the "taxotears."  This week, my hair started to grow back. People keep asking if it's growing back differently. I don't know. I've never shaved my head before this. So far, it looks pretty peach-fuzzy.

I still have icky fingernails, but as long as I keep them very short and painted, they don't bother me too much. My fingertips have regained feeling (hooray!!!)- in fact, I'm back at work as of last week, and playing piano every day. I have not regained my menstrual cycle. That's something I probably won't ever get back- intentionally on the part of my treatment plan. That doesn't bother me, but the side effects of menopause aren't that much fun.

After my appointment this afternoon, the surgeon said he doesn't need to see me again for 6 months. So I went out to make my appointment. The scheduler said, "That will put us in March." I flipped my phone calendar to March and my heart skipped a beat.

6 months ago this week was March 20. Diagnosis Day.

6 months ago today, I had that fateful biopsy.

6 months.

I am so very fortunate. Some people battle this disease for years. I caught it so early. I always say it was a flat-out miracle that I even went to the doctor. I never go to the doctor. But I had an uneasy feeling about that lump. I was so invincible. I never thought this would happen to me. But I have learned so much about the power of prayer, and the beauty of community through this experience. Thank you for reading, for praying for me, for bringing our family meals and sending money & gift cards. You have blessed us in more ways than we can count.

I mentioned earlier I went back to work last week. Today was the last day of meals provided by friends. Our house is back to being a disaster, and we are back to normal around here. We will look for every opportunity to "pay it forward."

I won't be free of the cancer center for 7 years. I still have to go every 3 weeks to have a Herceptin infusion for another 6 months, and next week, my oncologist will put me on a pill called Tamoxifen for the next 10 years- which will keep me in menopause until I'm pretty much old enough to stay there. They will continue to keep a very close eye on me. I have only just begun the recovery phase.  After 7 years, they will declare me cancer-free and kick me out the door.

We will celebrate every milestone along the way.

Wednesday, September 11, 2013

Back to Work! And More News About Xander

Well, I did it. I went back to work on Monday, just shy of 3 weeks after my surgery. I had 8 students; 4 in the morning, then a two-hour lunch break and 4 in the afternoon. Now that all 20 of my USF kids are signed up, I will actually do 10 on Mondays, followed by student recital at 4 pm most weeks. I usually do another 4 or so at home in the evenings, but I'm not starting up my home lessons until next month. I taught another 5 on Tuesday afternoon (followed by a hard nap each day). I will also teach a handful on Thursday mornings. It's not a bad load. 1 full day and two half days per week.

Oh, and I may have said "Yes" to being the rehearsal accompanist for USF's upcoming musical, "How To Succeed in Business Without Really Trying."

And by "I may have said 'Yes,'" what I really mean is, 
I went and introduced myself to the new theatre 
director and asked if I could be the rehearsal accompanist 
for the musical... I can't help it! It's like an addiction. 

The show is in November. Auditions (which I will be sight reading- GAH!) are next week. I'll keep you posted! :D

Anyway... here is where I currently stand in my treatment: I will continue to go to the Prairie Center and get a Herceptin infusion once every 3 weeks. Oh, and while Dr. Dosch was doing my mastectomy, he went ahead and replaced my faulty port, so now I have one that works again. Woo! I went to the plastic surgeon on Friday of last week and got my first expansion. They showed me what the expanders look like:
It's folded a little differently than this, 
but that is a pretty rigid plastic material

This explains why it feels like there is a large lump of clay under my skin. The circle on the top is the magnetic port, which is where it's safe to poke a needle into for expansions. They use a little magnetic finder, mark the skin, then poke a needle in and basically use a syringe to fill me with saline. There's more tubing involved, but that's the gist of the process. The reason many women say this hurts so bad is because of the amount they are given. I was only given 25cc's on each side this time. Next time will be 40, then 50, maybe 60 and possibly as much as 100, but I don't have to take that much at a time if I don't want to. It is necessary to take muscle relaxers for a few days following a fill-up, because the expanders are behind the pectoral muscles. I didn't even feel the needle poke because I don't have functioning nerve endings in that part of my body anymore, so that's a plus.

The expansion process takes about 3 months on average, but I can do it at whatever pace I want to. Then after I decide I have been expanded enough, they go one larger (it's like going "one louder" on your guitar amp), then leave me alone for 3 months to give the muscles time to adjust to their new shape. After 3 months, I can have the second surgery to take out the expanders and put in the actual implants, which are supposed to be much more flexible and natural feeling.

So that's where I am in the process. Now for an update on The Boy.

Today (Wednesday), we took Xander to have a CT scan before school, then let him start and finish his day at school but picked him up for a couple of hours in the middle of the day to visit the surgeon, Dr. Bufo. We were very impressed with this guy's knowledge of pectus excavatum and the number of cases he has treated. Here are a few things we came away with from today's meeting:

  • This is not something that Xander will outgrow, but rather that it will get worse as the years go by. He says that Xander will probably go through another growth spurt, or possibly two (Geesh! I thought it was hard to find pants for him now...) and that the pectus will continue to get worse, not better. 
  • He showed us on X's chest how you can see his heart beating very close to the skin while he is at rest. While his heart is not compromised yet, it will get pushed farther and farther to the left until it's almost in his armpit if left untreated. Matt took video of this phenomenon because he told Xander, "You're going to want to see this freak show." 
  • Dr. Bufo explained the surgery called the Nuss Procedure that he is an expert on. He actually studied and worked with the inventor, Dr. Donald Nuss. The nuts and bolts of the surgery can be found in this link. Basically, they will surgically insert a bar through Xander's chest cavity that presses the sternum forward. There is a 5-6 day hospital stay involved.
  • Dr. Bufo said that the ideal time to do this type of surgery is when a boy is 12 because the cartilage in his ribs has not calcified into bone yet. Every year they wait, it gets harder to do, more painful, and less effective. Xander is still in a safe age range.
  • The C-T Scan that they did on him this morning showed that his heart is currently not in danger- it measured the space from the sternum to the spine. Likewise, the Echocardiogram also showed no defects, but Bufo says if he did a lung function test with a pulmonologist, it would probably show that his lung function decreases with prolonged cardio activity, according to the way Xander described his cross country experience last year.
  • The surgery will take 6 weeks of recovery time, so he wants to wait until school is out. (Let's see if he has Mom's resiliency. I told him maybe I could do my implant surgery at the same time and we could race to see who recovers first!) There is no rush, it is very slow-developing. So we made an appointment for a day when they don't have school in February to test him again, and make sure that insurance is going to cover the procedure, then we will plan to do the surgery in the summer so he doesn't have to miss school. 
  • I asked if he had any concerns about Marfan's Syndrome, which Dr. Sami, the cardiologist, had mentioned, and initially he dismissed it pretty quickly, but then when I got home, I got a call from his nurse that said Dr. Bufo was doing his dictation and noticed the note from Dr. Sami about the enlarged aorta, and asked if we would take Xander in to see a pediatric opthamologist, Dr. Tufty (interestingly, a Sanford doc), to tell us for sure whether he has Marfan's or not. Apparently, it's very obvious in the eye to the trained observer. 
So we are not in any hurry to start this whole process, but are methodically moving toward a resolution.  Meanwhile, here come a whole 'nother army of medical bills... yay...

And to think- this is our "easy" kid!

I have to tell you how proud I am of Xander though. Before we saw the surgeon, we were under the impression that the surgery was kind of optional, which it still is, but that it was more cosmetic than medically necessary. He said that given the choice, if it was just going to look weird but not be a real danger to him, he wouldn't bother. "I'm comfortable with who I am."  (WHAT!?! From a 13 year-old?!) I told him that maybe someday, you know, FAR down the road, maybe a girl might want to look at his chest without a shirt on... AFTER you're married or something. And he said, "If she doesn't like the way I'm made, then she's not the girl for me." (Aw! I hope he's able to instill such self-confidence in the "girl for him" somewhere down the road)

I just wanted to get that out there because his whole attitude might change when he's 15 and girl crazy. But for now, I have a psychologically secure teenager. It blows my mind!

Of course, this attitude shouldn't surprise me. This is the kid who regularly wears a T-shirt that says, "WARNING: You Can Go Blind From My Pure Awesomeness"
That's my boy!

Friday, August 30, 2013

Recovery Update & Xander News

It is so good to be home! I have been progressing very well. My main job has been to keep track of which medications to take when. I made a little spreadsheet to keep myself on track (and to avoid overdosing!) I will tell you this, I am NOT waiting 4-6 weeks to go back to work. 3 will be just fine, and will make my life considerably less difficult than if I had to scrunch the semester into a shorter time period.

We came home from the hospital a week ago on Friday evening, and my Mom stayed with us through Sunday afternoon. I was able to get up and go to church on Sunday morning with no problem. I have taken naps when I need them, and generally kind of putter around and do low-impact stuff around the house.

Monday, the kids went to school and Matt went to work. I was left home alone and tried to do some baking, but reaching into my baking cupboard was a stretch beyond what was comfortable for me. I did get a pan of banana bars made, but was VERY grateful when someone showed up at the door with dinner because I was wiped out!

Tuesday and Wednesday, I ended up going with Matt to work at the church just to keep myself out of trouble. He gave me a little project to work on which mostly consisted of writing and cutting. I felt much better those two days.

I'm pretty tired of not driving. I dislike having to be chauffeured around like Miss Daisy. Also, I am a horrible backseat driver. Mom says maybe Matt should teach Xander to drive, not me. She's probably right.

Speaking of Xander (our 13 year-old son), Thursday we took him to the doctor. He has developed a pectus in his chest during his adolescent growth spurt, that looks something like this:

Xander is clearly more intelligent than this boy. 
You can just tell by the vacant look in his eyes.

His lower ribs really flare forward more than this drawing, making the depression appear deeper than it is. We have been concerned that it was impairing his heart/lung function when he was exercising, as he gets winded really easily and it scares him a bit. Obviously, it is not life-threatening, but we finally got insurance that would cover the doctor's visit, so we took him in.

The pediatric cardiologist that he saw didn't seem too concerned about the pectus itself- he says it has to be really deep to move the heart like in the drawing above, but he saw several things that point to the possibility of Marfan Syndrome, specifically his tall, lanky stature, the stretch marks on his back (stretch marks?! I thought those red lines were just scratches!), the fact that he wears glasses and some of his joins hyper-extend. Marfan Syndrome is a connective tissue disorder than can effect several different parts of the body, specifically the heart, blood vessels, joints, bones and eyes.

If he has this, it is very mild.  It is a genetic disorder, and no one on either side of our family has it. Most of the characteristics above can also be applied to me: tall(ish), lanky, with bad eyes and joints that hyper-extend. They did an Echocardiogram, which showed that his heart is functioning perfectly, but he has a slightly enlarged aorta. At this point, it is just something to keep an eye on. They will measure it again in a year and see if it grows proportionally with the rest of his body, or gets out of control.

They also set up a CT scan and a visit with a surgeon for a couple of weeks from now. The cardiologist that we talked to said that if Xander is really self-conscious about the dip in his sternum- and it is very noticeable, it looks like he took a cannonball to the chest, that psychological reasons are enough to have the area repaired surgically and still be eligible to be covered by insurance. He is at a good age to have the surgery, as his cartilage is still very flexible.

I didn't really get a chance to talk to Xander about this last night because of his activities, so this morning, I asked how he was feeling about it all. He said it was good to know that his heart is just fine, and he's safe to do most physical activities- but has an excuse not to do any serious weight-lifting sports like wrestling, football or hockey. I told him that surgery is an option, and it's kind of up to him. I don't want him to be so self-conscious about it his whole life, and to say, "I could've had surgery when I was a kid, but my parents wouldn't pay for it,"* when he's an adult.  We're going to let him think about it for a while. There's no rush. We'll let you know what happens with that as things progress.

*(you have to use a sullen teenager voice in your head when you read that part)

Anyway, back to me.  :)  Here's me today:
the ruffles on this shirt hide a multitude of weird problems
(AKA, non-existent breasts and the drains around my tummy)

Today (Friday) is Matt's birthday (yay!), and I had two doctor's appointments scheduled (boo!). At 9 am, I went in to the plastic surgeon's clinic and had my last 2 drains removed. I was worried that it was going to really hurt, as I've heard some horror stories, but it was fine (whew!). My whole chest area is permanently numb now, so that gives me an advantage in any further treatments I will have. Which will hopefully just be the expansions from here on out. (Well, and the final implant surgery, and then possibly tattoos. We'll talk about that later.)

I say "hopefully" because when I went to the breast surgeon this afternoon, he said that there was about a 1 cm visible tumor that he removed with the breast tissue. I asked how this could be, since the MRI showed that it was only 3 mm. He said the MRI only picks up the solid core of cancer cells, but the visible tumor was significantly larger than that (I might not have the details quite right here). He is concerned that the margins that he removed around the tumor cells might not be enough and I might have to do radiation.

I just want to be done with this! Also, radiation messes with the reconstruction process. And radiation causes cancer. "You have cancer? Here's a treatment, but the side effect is more cancer!"* I don't like it. They're really going to have to do some convincing to get me on board with this.

* (you have to read this part in a game show announcer voice)

They are going to present me at Breast Conference next Wednesday, Sept. 4, and as a team decide whether the ongoing Herceptin treatments will be enough or whether they will have to go the more aggressive radiation route.

And you thought you were done praying for me!

So here are the two specific requests that I have:

1.) For Xander's health and the possibility of surgery as described above.
2.) That I will not need radiation. (Please, oh please, oh please, oh please!) You can target prayers for the doctors making the decisions on Wednesday, Sept. 4 (I don't know what time of day, probably early).

Thanks once again to those who have sent money and gift cards. You have eased our financial fears through this stressful summer. We are so very grateful!

I am heading back to work on Sept. 9, and am excited to be getting back to "normal." I got a preview of my USF student load today, and I already have 15-17 students, plus three that have to finish incompletes (AKA senior recitals) from last semester. And there will probably be more once the semester starts next week.

I have enjoyed the unstructured pace of my summer, but it's time to go back to being a productive member of society again.

Thursday, August 22, 2013

Post Surgery Update

Thank you to everyone who prayed me through! I had a very successful surgery, there was no sign of the tumor, and no trace of cancer in the lymph nodes. I AM CANCER FREE!!!  It's officially official!

I am recovering quickly. Yesterday afternoon, I was a hurtin' unit after they wheeled me over from recovery into my hospital room. My pain shot up to an 8 or 9 on the pain scale, and it got a bit out of control on me. So thank you to those who visited yesterday, and I apologize for not being at my best.

Matt & I slept deeply but in short bursts through the night. I swear I got up to pee about 6 times. Matt slept on a nifty little single hide-a-bed in my room. He and the overnight nurse had to help me each time I got up. I had to retrain my urinary tract to do its thing after having a catheter during surgery. Oh, and here's a little tidbit from the "bet you didn't know this" file: Before surgery, they injected a radioactive dye into my breast to help the surgeon locate and extract the sentinel lymph node for biopsy. It turned my urine blue! Tidy Bowl blue. Well, it lightened up to a scope green, and then a pale spring green over the course of about 12 hours.

I came out of surgery with a thick Ace bandage wrapped around my chest, with 4 drains coming out of my sides. I think the bandage comes off tomorrow (2 days post- surgery). I hope so! It is really itchy. Two of the drains will be removed when the plastic surgeon comes to check on me in the morning. I will go home with two still attached, and have those removed next week at a follow-up appointment.  The drains look something like this:

This is not my tummy. I'm not showing you that.

They pull the excess fluid out of the surgical incisions using suction. I explained it to Maia this way, "It's kind of like when you want to fill a rubber ducky with water in the bathtub, so you squeeze all the air out of it, then put it underwater to fill it up." I think they should make them out of rubber duckies to give your surgery a more whimsical feel. What do you think? I should patent it!

I was given a pain pump to administer my own narcotic drip through my IV yesterday and overnight. It helped an awful lot, but by about noon today, I didn't need it anymore. I am currently on 3 oral medications:  a muscle relaxant because the pectoral muscles can spasm from being stretched, an nsaid, and a narcotic, all of which will go home with me tomorrow. I am staying ahead of the pain so far, which is very important.

I cannot believe how fast I am recovering. We'll see how I feel in the morning, but I went from slowly shuffling on shaky knees down the hall, attached to an IV pole and an escort on either side of me last night, to today where I was unhooked from the IV, fully dressed and walking easily on my own down to the small cafe they have on this floor to eat all 3 meals. This evening I am comfortably sitting up, fully dressed in my own cozy jammies, wearing my hair and generally feeling 100 times better than I did 12 hours ago.

Here's me this afternoon:

Of course, you can't see the bandages or the drains, the bald head or the nasty fingernails in this picture, but they're not what I'm all about.

Yesterday morning, as I was checking into the surgery center bright and early, the nurse doing my initial paperwork looked at me quizzically and said, "Are you the blogger? Were you the one with the news crew last time you came in here?" I said I was surprised she recognized me because my hair was so much different the last time I was there (to get my portacath inserted in April). She was not my nurse last time, but she said she recognized my smile and my laugh.

I can live with that. I pray that deep and abiding joy will always be something that defines me.

Monday, August 19, 2013

Going Under The Knife

Well, the big week is here. I have surgery scheduled for Wednesday morning.

Many people have caught me and told me they are praying for me this week. I can't tell you how much I appreciate that. I have to say, your prayers are doing great things!

A couple of updates:

#1- Fingernails: They are doing better! I know you were concerned. I know it's a small thing, but I really feel like God is answering our prayers about this. (He loves to answer prayers about the little things too.) They still feel pretty sensitive, and like they would hurt really bad if I caught them on anything, but I have been able to clip them maybe 3 times since the last time I wrote, and every time I do, I feel like I'm a millimeter closer to safety with them. I even dragged my cello out of its case and gave it a try last week, and it wasn't impossible. Except that I haven't practiced since I was diagnosed for whatever reason, so I'm pretty rusty. I wear rubber gloves in the kitchen a lot, when I'm making dinner, cleaning up, or eating a particularly messy meal -because nothing says "Good Nachos" like eating them with rubber gloves on!

I feel like the neuropathy has abated almost completely. As a matter of fact, I sat at the piano and sang and played for a good hour or more this afternoon, and didn't have any issues with my hands. So thank you so much for these prayers. God is truly answering!

#2- Provision: Oh. My. Goodness. You guys are the best. Thank you for everyone who has sent some money our way. We are so appreciative of the sacrifices you have made, and it makes me giddy to see how God provides through the gifts of his people. Four days in a row, we have received OUTRAGEOUS gifts- some anonymous, others not. We are thankful for each and every one. As a result, we celebrated our 21st anniversary (where someone snuck in and paid our bill- leaving in addition $21.21 in cash- which we were then able to leave as an outrageous tip for our cute waitress), and we will be able to meet our household bills for the end of August, as well as pay off the accumulated medical bills that have come our way in the last few weeks. So thank you, thank you, THANK YOU! We are humbled.

This is such a faith builder, when we place our trust in God for provision, and He nudges His people in this way. I would encourage you to trust Him when you are worried. Make your needs known for him, and ask for His help. He is a good Father, and meets the needs of His children. Sometimes, He provides like this, but more often in our lives, He has sent more work our way. Giving your child an opportunity to earn his or her income is a necessary something I do as a parent- why should He be any different?

#3- Platelets: They went up! They were at 142 when they ran labs on me last week. Those prayers did it again! This is not a super-high number, but it's high enough for surgery, and they are moving in the right direction. My liver numbers were a little low, so the doc told me lay off my celebratory drinks. :)  Also to stay away from Tylenol.

Moving Toward Surgery
I am following the pre-surgical protocol, and have not been taking any vitamin or herbal supplements since last Wednesday. My muscles sure got achy for a few days. Probably should have eased off.  I usually take a Vit D3, B Complex, Calcium Carbonate/ Magnesium, some fruit & vegetable juice supplements called Juice Plus, and an herbal supplement for the neuropathy called Neuro-QOL. (No drugs. Isn't that wonderful?) So I am off all that, and my system should be free of all the extras for Wednesday.

I am busily trying to get all my ducks in a row by tomorrow. School started for the kids today, so I'm finalizing carpool schedules, making sure they have all their school supplies, lunch money, etc. I am trying to get my lesson schedules set up, even though I won't go back to teaching until Oct. 1. I have 2 college students doing their senior recitals in September, so I did what I could to help them put finishing touches on that, and now it's up to them. I set up a meal sign-up for anyone local who wants to bring us meals over the next several weeks. I played as many services at our church as I could before taking some time off. Squeezing out the last of my service! Got my small group set up, and my moms' prayer group for school... I hope I'm not missing anything! I'll probably think of something huge at 3 am on Wednesday.

The Big Day
My timeline on Wednesday is arrival at 5:30 am. I was told not to bother being early, because that's when they open. Geesh. Then they are going to do a Sentinel Node Injection at 7 am. That is described as:
...a procedure used to help identify the sentinel lymph node(s), which is the first lymph node to which cancer cells are likely to spread from the primary tumor. The procedure involves injecting a radioactive isotope (technetium sulfur colloid) into the breast, generally around the central aspect of the breast.   The material moves through the lymphatic channels and accumulates in one or several lymph nodes. During surgery, a handheld gamma ray counter scans the area of the underarm to locate the sentinel node(s). ~Source: 
Surgery (bilateral simple mastectomies with possible right axillary node dissection) is scheduled for 9:00 am. I told several people it was at 7- I didn't read my admission sheets very thoroughly. Sorry. During surgery, the breast surgeon (Dr. Dosch- if you want to pray for him by name) will remove the breast tissue, and possibly one or two lymph nodes, according to what he sees with the Sentinal Node injection.

Dr. Dosch may also fitz around with my port to make it work properly. It functions at 50% right now, meaning they can use it to put medicine in, but not to draw blood out. They are going to check and see if my insurance will cover that, and if so, he will fix it. If not, he'll leave it alone, and it won't be a huge deal.

Then the plastic surgeon (Dr. Karu) will do her magic. She will begin the reconstruction process by putting tissue expanders behind the pectoral muscles. These are like little water balloons that push the muscles into a new shape. She will pump me up a little bit at at time over the next few months. As you can imagine, the recovery from this surgery is pretty grueling. Think about all the things you use your chest muscles for.... yeah. Everything.

I will probably be in the hospital (Avera McKennan) for two nights, then they anticipate I will be pretty useless for a couple of weeks. They told me to take 4-6 weeks off from work, so I did. Of course, I haven't worked since school got out in May, so I'm anxious to get back, but I'll be fine. I will probably ease back into active life after the first couple of weeks, doing a lesson or two here and there, but I promise not to push it too fast.

My mom is going to come and stay with us for as long as we need her, and of course Matt will do double duty, working and taking care of the kids AND me. He's a super hero.

Prayer Requests:

  • One potential complication when they remove any lymph nodes can be
    , which is a "swelling in the arm that occurs when the normal flow of lymph in the arm is reduced." This would be bad, so let's pray it doesn't happen. The tips my little brochure gives me are to slowly return to normal use, protect hands from infection by wearing gloves and washing hands often (done!), don't wear tight sleeves, elastic cuffs, bracelets, watches or rings on that arm (rings? I... uh. OK), and do some therapy exercises. ~source: "Understanding Breast Cancer" Krames Patient Education.
  • Uneventful surgery.
    I would love to be "not weird" for this. I pray for a textbook surgery with no amazing stories for the docs to tell afterward.
  • Anesthesia sometimes makes me nauseous.
    It did not when I had my port put in, because I mentioned it to the anesthesiologist. They can add anti-nausea drugs to the drip so that I won't be sick afterward. On a side note, and I think I wrote about this before, but the last time I went under, I tried to pray for the whole group before we got started- but it turned out that the anesthesiologist did such a quick job that I thought I was praying for them before, and they were already done!
  • As a singer, I'm always nervous when they intubate me because that tube goes right past the
    vocal cords
    . So protection for those fragile little muscles that I put so much time and energy into.
  • And of course,
    recovery. I have given myself plenty of time before I will resume my normal life, but I am sort of a fast mover. You might have noticed that. I don't like sitting around. So I know I need to be patient with myself, and allow time for healing. 

Now, for the "before" picture: 
...and now you know why it was so easy to find a lump the size of a marble.

I know, right? All this fuss over those little things!? I'll leave you with a quote from my ever-encouraging mother. "I don't know what I'm so worried about. As small as you are, it shouldn't be any worse than having a wart removed."

Thursday, August 8, 2013

Time to Celebrate!

Wahoo! Chemo is over! I had my last chemotherapy infusion (#6) on Tuesday, July 23, 2013.   Unfortunately, I couldn’t celebrate right away, because I still had to go through the after-effects. I had all the regular symptoms: fatigue, mushy head, touchy stomach, etc. but because I had the treatment on a Tuesday instead of the regular Thursday (that’s kind of a long, unnecessary story), I came out of the fog 2 days earlier than usual, and felt good for Sunday morning church- which was great because I ended up playing on the worship team that morning. That would have been absolutely impossible for me if I had still been in the fog. Not only would I have been too tired to stand, but one of my symptoms is that my brain can’t handle music, and it bounces around inside my head like I’m inside a cement bunker. It’s just too much, and I can’t stand to listen or sing. As you can imagine, that drives me crazy, as playing and singing are my favorite things to do!

a little glimpse of the crowd at our one morning service (replacing the normal 3). 
I was on the bandshell stage waaaaay in the back of this picture.

Predictably, my tongue took a couple of weeks to recover from the treatment, but it’s my hands that have really been bothering me this time around. It now looks like I will loose all of my fingernails. It started with them turning white along the tops, then grey along the bottoms (I’ve just kept them painted because they look so ugly), but these last few weeks they have been very sore. They feel bruised, like they were hit or pinched, and every time I bump a nail against anything- even a pillow or something soft, it hurts like crazy! Even playing keys in church last Sunday (the second week after treatment) was sort of painful- but not enough to keep me from doing 4 services (3 morning, one evening). 

I have been very careful with my hands, keeping the nails very short, not allowing them to soak in water, and trying not to subject them to undue trauma, but a few days ago I noticed something new. They stink. They smell vaguely like old cheese. Gross! This is because the nails are lifting off the beds. I can look down my fingertips and see right up under the nails. My left thumb is the only one of my 10 fingers that has not hollowed out yet, but I have a feeling it’s only a matter of time.
Eew! Gross!

So, much like my hair, I will loose my nails, and they will grow back strong and healthy in a few months. And much like loosing my hair, I’m not happy about this. I have to confess that I’ve been downright grumpy about it. Meanwhile, I have increased my Neuro-QOL supplement to the recommended 2 capsules 3x/ day to help with the neuropathy in my hands, and I got a big box of rubber gloves to protect me from infection. I’m thinking of getting some pretty little white gloves like the kind ladies used to wear all the time- simply because I’m so vain, and I hate the idea of they way my hands will look without nails. Wonder where you find those? Might have to search some vintage resale shops... Or Maia’s dress up box, now that I think of it.

I had my pre-surgical blood draw this week, to make sure my levels were high enough to endure surgery. I could have stuck around and waited for the results, but I didn’t. Until I hear otherwise, I’m going to assume that my platelets are high enough to have surgery. The surgeon wants them at 120K. Before I started chemo #1, they were at a nice healthy 300K, and they gradually have dropped over the course of my 6 treatments. I asked everyone to pray aggressively for my platelet levels before the last treatment because they were at 128 before #5, and had to be over 100 in order to do the last one. Thank you for your prayers! They actually went back up to 132 for #6!  So unless this last round of chemo knocked them significantly- and I don’t see the physical signs of that- such as unstoppable bleeding, nose bleeds and excessive bruising, I’m going to assume that I’m in the clear. 

Some friends offered to have a party for me, but because I’m done with chemo, AND trying to build up my endurance to recover from surgery, I’m trying to naturally detox. I’m still avoiding sugar, eating lots of fruits and veggies, avoiding processed foods and stocking up on protein for recovery. All these things line up to make for not a very fun party, actually (who wants naturally sweetened granola and kale chips? What a party!). Also, it’s terrible timing, because school starts in a couple of weeks, and everyone is squeezing their last bit of summer fun in before we all have to go back to our regularly scheduled lives. 

But last weekend turned out to be the exact kind of celebration I needed. It was a second weekend after chemo, so I was feeling pretty good (except for a little bit of cardboard tongue). I was scheduled to play and sing for church on Sunday morning, and our worship leaders picked the BEST music! One song in particular, was one that we’ve never done, but when Aubrey (my friend/ worship leader/ former student) found the song shortly after my diagnosis she claimed it as her “Amy song,” and knew we had to use it in celebration once my treatments were over. It’s called “In Jesus’ Name” by Darlene Zschech (pronounced "Check"), and you can watch the full 9 minute video here:

I know, I don't usually watch videos either, but I want to share the lyrics with you, because they were such a great victory cry for me this weekend:

God is fighting for us,
God is on our side
He has overcome,
Yes, He has overcome
We will not be shaken,
We will not be moved
Jesus You are here

Carrying our burdens,
Covering our shame
He has overcome,
Yes, He has overcome
We will not be shaken,
We will not be moved
Jesus You are here

I will live, I will not die
The resurrection power of Christ
Alive in me and I am free
In Jesus' name
I will live, I will not die, 
I will declare and lift You high
Christ revealed and I am healed 
In Jesus' name!

God is fighting for us
Pushing back the darkness
Lighting up the Kingdom
That cannot be shaken
In the Name of Jesus,
Enemy's defeated
And we will shout it out,
Shout it out

We also sang a couple of other great celebration songs, and some songs that we just love as a congregation and as a band. It was an aggressive song lineup that asked a lot of our musicians, but the Spirit was so strong even in rehearsal, that we eagerly anticipated Sunday morning. And God did not disappoint! We were convicted that we should be that excited about our weekly gatherings every week, anticipating and preparing for a great move of the Spirit every time the Body of Christ gathers. 

In addition to a great Sunday morning, and Thursday evening practice, I attended a Beth Moore Living Proof Live conference in Sioux Falls on Friday night and Saturday morning with my mom and several ladies from our church. I’ve mentioned before that I’ve been leading a Beth Moore women’s Bible study this summer with about 8 other ladies, and I can’t say enough good things about her teaching. I’ve seen Beth speak live 3 times, and attended simulcasts a couple of other times. I’ve done about a half dozen of her studies over the years, and I always come away feeling like I’ve grown in faith and Bible knowledge. I haven’t done one of her studies in about 4 years, mostly because they take a lot of discipline and daily dedication, and those are not my strong suits, but I knew that this summer was the year to dig back into the Word in a way that one of these studies would really help me to do.

I have been griping a bit lately about not really knowing what I’m supposed to do with my life now that the worship leading chapter of my ministry has apparently closed (this was about 8 years ago). To be honest, I’m still mildly resentful about this, but remaining obedient and subservient with a good attitude in my background role on the worship team. But I’ve been trying to figure out what ministry looks like for me moving forward.

So we get to this huge event on Friday night last week, and the main logo comes up and the theme for the weekend is “Birthing Purpose.” Identifying God’s purpose for your life. Because we ALL have a purpose, and until we figure out what that is, we will be vaguely unsatisfied, and searching to accomplish something, but never really knowing what to aim for. Perfect! 

I have loved talking to my friends that attended about what God is doing in them as a result of the weekend and listening to His Spirit. I just love seeing how God is moving in the lives of others, and being able to help them process through what that means for them. A couple of the things that I came away with were: 

  • to keep writing here on my blog, as I’ve received a great deal of encouragement from so many people- often complete strangers. 
  • I am trying to figure out what it looks like to be sort of a mentor figure to the young women in my church and in my life. 
  • I need to get back to work. Shaping singers into the best that God has for them is something I love to do. I have been off work for almost 5 months now, and I am chomping at the bit to get back to it.

My book project is on hold for a while. I think I need the benefit of hindsight to really see how God is putting pieces together throughout this journey for me. Some of it is so obvious right now, and some things won’t make sense until later. I will revisit this idea later. It may happen, it may not.

My treatment schedule for the next little bit looks like this:

  1. I will continue Herceptin infusions every 3 weeks until next April. Herceptin is targeted chemotherapy for HER2-neu receptive cancer, the aggressive form of breast cancer that I have. I will be able to do this on Friday mornings when I go back to work, which is my regular day off. It will not give me the nasty side effects of the other two chemo drugs, Taxotere and Carboplatin, that I have been taking during the last 18 weeks.
  2. I have a double mastectomy and reconstructive surgery scheduled for Wednesday, August 21 (pending platelet levels). I will post more about this process in another entry, as it is not a simple procedure. It will involve 2 nights' stay in the hospital and 4-6 weeks off from work, so I will return to teaching at USF on October 7.
  3. I will begin hormone replacement therapy after surgery. I will explain that more when I understand it better. All I know is that the chemo has shut down my ovaries, sending me into early menopause. The hot flashes have started. (yey.) Mostly they bother me at night. I hardly notice them during the day. 
So prayer requests are:
  1. Again with the platelets. The higher they are, the better I will fare during and after surgery.
  2. Successful surgery with no complications. 
  3. God's provision, as we are nearing the end of our savings. Paychecks will start up again at the end of September, so we're pretty close. Thanks to all of you who have sent gift cards, meals, money and food. Your gifts mean more than we can express in words!
One more thing I want to touch on before I finish up here. This stupid thing called cancer might be harder on my loved ones than on me as a patient. It is especially challenging to my parents. They both have their own ways of dealing with their grief, and helplessness. 

I sat down with my mom on Friday night, and she told me how angry she was with God at first.  Angry, scared and helpless. She said, "It took me a long time, but I had to get to the point that I knew I could live if you died. And you helped me with that because you made it clear that you know you will live even if you die." We had a great weekend together, and I'm not looking forward to them being gone all winter to Arizona. But somehow I'll make it through! 

My dad, much like me, writes his feelings out. He has sent me several poems over the last few months. This is the one he sent today.

Honor is Due
By David Eitemiller
Jesus, you are my creator and sustainer
All I have has come from your hand
Help me to draw from your wisdom and power
So I can fulfill some small part of your plan.

Jesus you are loving and kind
Your mercy is bountiful and true.
And you are a God of justice and grace.
So help me to glorify you.

I am weak and lowly
You are almighty and holy
You already know, the way I should go
But why do I learn so slowly?

My heart is deceitful and wicked
But you are so pure and so kind.
Keep the evil one away from me Lord.
And help me keep you on my mind.

As I relate to others around me.
As they observe me in all that I do.
Help me explain how you found me.
And give honor where honor is due.

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. :)