Praying for a Block in the Road

The lat flap surgery of October 8 seems to be pretty much behind me now (there's a pun in there somewhere!). At surgery, he - the plastic surgeon - placed a tissue expander between the old, leathery, radiated pectoralis and the latissimus muscle (now a new chest). Today was the second 'fill' of that tissue expander and amazingly, I'm feeling quite well! The first fill knocked me out for a good 5 days. That is to say, limited ability to use my arm, sometimes it hurt to breath b/c it would stretch my chest muscles a little more, sleeping was a hassel... driving, problematic.

But today after the second fill, I'm feeling very 'able,' which is exciting for me. Though I'm in conflict yet about my desires to do lots of 'stuff' like all the things that kids and household require, but also wanting to take the best care of myself which includes things like exercise, but also rest. So my conflict is to rest and heal (and feel the guilt of laziness) or to exercise and 'do' and potentially burn out. Such is the question for anyone, right? How much is too much and how little is just flat out wrong or unhelpful.

On another note, I heard a great sermon on the radio the last two days by Tony Evans about Jesus' handling of the death of Lazarus. One point he makes, among many (I had to pull the car over 3 times to jot down notes) is about faith NOT being a feeling. Faith in God is an action. The Bible talks about walking faithfully with God. Though perhaps I'm interpreting incorrectly as the Bible never states exactly that we 'walk by faith', I'm inclined to agree w/ Mr. Evans that faith, then, is an action much like walking is an action. Faith is not a feeling: "I feel God calling me to XYZ" but rather that our faith is more a reflection of obedience to God's Word. I may not FEEL that I should stay in a yucky situation or take steps for a new direction or whatever the case may be. But if I have been mandated by God to follow his commands as laid out in His Word, in love for Him I am to step out in faith. I cannot understand the ways of God, but I am assured of His promises and that is where faith is my blessing.

Preach to the choir, Amanda. Josh and I are praying and trying to seek God's will about what to do next: is it a new church plant somewhere, is it working for an established church, is it facilitating a restart for a church? In all these things, how will we best fulfill His command to 'go and make disciples'. Do we over-think these things? Is it as simple as 'going and making disciples' and God will fill in the blanks? I guess, Lord, I need a starting place - just like you can't start a swim race or a foot race w/out a starting block, we need a block for our family to start from.

We pray for a clear block in our road. :)

Simply this...

What can I bring to the King of kings?
What can I give?
What can I bring?
What can I say as an offering, Lord?

Simply this...
I will offer up my life
In spirit and truth,
Pouring out the oil of love
As my worship to You
In surrender I must give my every part;
Lord, receive the sacrifice
Of a broken heart

I have a lot of angst today.
I have lat flap surgery on Friday morning. I don't like not knowing specifics of my life - like how long in the hospital, how long until I'll drive, will I bounce back quickly or slowly, when will this all be over? You know, the basics.

So what to do about it? As I finished running this morning (amazing thing in itself!), this Matt Redman song I Will Offer Up My Life came on my iPod. Combine pending surgery with a compelling question Josh challenged me with last night, "How ARE we different from non-Christians? Our life doesn't really reflect different values than anyone else except that we have a different schedule on Sunday mornings. We don't make it an intentional part of our lives to pray for those who don't know God, to serve the widow and orphan or those in distress! What ARE we doing??"

So I ran and then did some yoga. Try this: lay flat on your back with your arms out to the sides like when you were a kid sprawled out in the grass watching the clouds. Now bring the soles of your feet together and let your knees dangle/drop toward the ground. It'll stretch your hips a bit. Now notice your belly and your breathing (God gave you that, you know). Relax and let your belly button fall closer to the ground when you exhale - but don't force it, just relax into it. NOW, ask God this, "What can I offer?"

My answer: absolutely nothing! I can't give God anything that He doesn't already command. I can only worship him in spirit and truth - offer my broken heart.

It's a place I'm not comfortable with. I want to do it! But I know my efforts are causing me angst and forcing me to go running and do funky yoga poses. But if that's what it takes for me to hear the voice of God, I may be running a very long way and then yoga-ing ALL day! (Seems a bit self-indulgent at the same time. "Sorry kids, no dinner, I'm 'sprawling'"

'Passing It On' and 'A Dream'

I had a realization...and I had a dream.

We're finishing up our series at church about families and the last sermon was on Psalm 78 and passing along our faith to the next generation. This past spring, when I started radiation, I bought two things: a giant purse and a small Bible (I'm certain size is not an indication of priority!) The purse held things like my phone for my disastrous appointments, my journal, all my creams and lotions for the skin burn, and I wanted to add the Bible to the mix. I had a wonderful ritual of dropping off the kids and then parking the car to read one of my devotional books. The books always had references to scripture texts and I wanted to use this little Bible to supplement what I was reading, obviously. So I started marking up the Bible like I had all my other ones and casually thought about some day giving it to my daughter Abby.

Shift gears a second, but keep that thought.
We're living with a dear family, the Kenyons, right now and in order to make space for all the VanTils, Patti was going through some boxes in the basement that she had 'inherited' from her folks. Within all the boxes of clothes, fabric, books, papers, etc, etc she found a letter that her mom had sent to her that spelled out in great detail what she saw as the characteristics and strengths of each of her family members. One thing that impressed me about this was the joy that Patti felt when she found this note from her mother. Yes, the material was remarkable, but the pleasure that Patti as her daughter felt when she read these words directly from her mother about what she saw in her family's future was beautiful.

So coupling our Sunday message, this new little Bible of mine, and seeing Patti's joy at reading and realizing her mother's inward thoughts spurred me to step up my game a bit. I've become even more deliberate in writing in this little Bible and underlining texts or making references so that one day, maybe at her high school graduation, I can pass along this Bible, full of my markings and a few of my thoughts to my little girl.

The realization came in that I can pass along my faith in more ways than just 'word and deed.' So often as a parent we (or maybe just I) try to find ways to parent kids using Biblical principals - bring to mind texts to quote at the right time, use Biblical analogies for discipline - but this, for me, was a simple way to impress on my kids the importance of the Bible and how it's been used in my everyday living. A tool for giving my kids a generational perspective without all my babble - let the Word of God speak for itself rather than my weak attempt to duplicate what God has already given. I'm not doing justice, but hopefully you get the point.

The other was my bizaar dream last night. It may have been a direct result of the valium (that didn't seem to be working) I took to relieve back spasms after my re-fill by the plastics guy yesterday. BTW the second time around is NOT more comfortable than the first time of expansion. Great. Anyway... the dream is this: we (Josh, me, two 20-something guys, their friend and two other folks) are driving along in a van jawing about nothing, but I have this impression of the two 20-somethings that they are, as I would call them (forgive me for stereotyping) punk business kids. That is to say, they their 'wisdom' did not match up with life-experience but they didn't know that yet. I even remember what they looked like. One kid was dark haired and when he spoke, he jutted his bottom jaw out. The other was dirty-blonde with a spent-too-much-time-at-the-beach mussy/trendy look.

Both these guys were spouting off about stuff that didn't seem to have much backbone, but they all of a sudden, threw out the following question: What good do you see having your kids follow the Bible? Not in so many words, but essentially, what use do you see the Bible having for your children? Why use the Bible?

Within my dream I jumped in and gave my answer, but upon waking I was disappointed with my gut response. So I challenge you, reader: why the Bible? What value does it hold for you? I'm thinking along the lines of Jesus' question to the disciples, "Who do people say that I am?" Their response was a quick gut reaction of what other people thought of Jesus, but He pressed them - what about YOU? Who am I to YOU? So what about the Bible? What is it to YOU? A good guidebook full of pithy, helpful advice? Is it a history book that shows us the 'way it should be'? Or a book that shows us how screwed up the rest of history was and thank goodness God doesn't turn us to pillars of salt for looking back like Lot's wife! What is it to YOU and how is it used as a tool for the next generation?

Empathy

This is a continuation of the previous posting about my shingles diagnosis. So if you haven't read that one, you'll have to back-track to see what that's all about.

God's given me yet another opportunity to increase my empathy meter. One thing I've learned through my whole experience (and there's been many), it's that God apparently wanted to bolster my empathy for other people. I've always known that it's a lacking area of my life, but I kinda chuckle at the manner in which God has chosen to teach me. I must be pretty hard-headed. ("No comment," says Josh)

Anyway, in talking with a friend at church she made the comment that she was surprised to see me at all because when her friend gets shingles (and it happens every time she gets stressed) 1/2 of her face breaks out in the rash. She doesn't even want to go out in public, and I can completely see why! The rash itself is quite ugly. It starts out blistery and then gets black scabs before drying up. I have one spot that created almost a crater-like sore and may leave a scar. Even now that it's basically 'cleared up' there's still evidence of where it was. I'm fortunate that it's on my shoulder. Even there, I've gotten many comments like, "Eeuu! That's a nasty rash!" Once again, God has shown me that there are many other people that have recurring troubles that effect their daily activities...often! How might I use my experience in its limited form to show active compassion, ask better questions, and choose my words when confronted with someone who is suffering? Have I done a good job of it already? I'm sure I've already missed the boat, but I'm trying and at least now I'm aware of so much more.

What else have I learned? I've learned that it's not so bad to be in 'the club that no one wants to join.' There really is an instant connection when someone I've never met tells me they, too, have or have had breast cancer. It's become a great opportunity for me to give hugs. Hugs are a southern thing that I miss. Have you noticed that southerners are quick to give a hug? We northerners are a bit more 'personal space conscious.' :) Once again, I've a chance to try out my newly developed empathy attribute. Praise God for short hair!

Below is a pic of said short hair taken at the recent Rockford Relay for Life. I'll admit I was completely 'anti-institutional' about it (that was Josh's word. I thought it was right-on!), but it was a good time and a good thing. Can you find me? I'm in the middle of my other River Rock relay friends: Larry, Dawn, Sharon, and Andrew. Unfortunately they're only a small sampling of those of us at River Rock diagnosed. I'm repeatedly amazed at how frequently I hear of someone else being diagnosed with cancer. It's running rampant. In my opinion we need to find the source to help the problems. I'm all for finding a cure, but we need to do our part for prevention and elimination of the causes as well...proper nutrition, fewer chemicals, more exercise - if you can't identify where all the ingredients of whatever you're consuming came from directly, I'm guessing God didn't necessarily intend for your body to have to deal with it. This is by no means limiting God, but rather a call for maintaining His temple, our bodies.

I'm getting all worked up - I better quit!

Up on the rooftop...

No, it's not Christmas in May...I have shingles now! (get it? rooftop...shingles? Ha!)

So here's the back-story. I got my port out on Monday, May 10 just as planned - so almost 3 weeks ago now. Two days later I had horrible shoulder tension (opposite shoulder) that I attributed to general tension or overuse (or is it something to do with the meds at port removal??). Tension/overuse seemed logical as we'd had a few weeks of a stomach bug running through our kids and I'd spent WAY too much time with the carpet cleaner. About the same time that the tension started I got a funny, rashy spot on my shoulder - you know, right where your trapezius muscle knots up - so almost directly over the worst of my tension and pain. (My dad used to grab those knots and squeeze them to release the tension if I mentioned I had a headache. I quickly learned two things: 1. Don't mention to Dad that you have a headache and 2. pressure actually does get rid of the tension!) So I was having a hard time figuring out the tension and the rash. Did I need to stretch the muscle? Exercise the muscle? Relax more? Was the rash poison ivy/oak from trompin' through the woods? Had I touched something and then pressed on those knots and now had some kind of contact dermatitus? Can tension come out through the skin? Was it sun poisoning? A radiation reaction? Strange reaction to the port? I tried stretching, yoga, relaxation, calamine lotion, hydrocortizone cream, Bag Balm, drying it out, you name it.

After about a week (which happened to be my self-imposed deadline for calling the doctor) the rash was beginning to resolve itself. What wasn't getting any better was my shoulder and muscle tension. After dealing with this 'muscle thing' for almost two weeks, I finally went the route of limiting the use of my arm. I wasn't so excited about it b/c the last thing I wanted was a frozen shoulder from not using my arm enough. (I typically do lots of stretching with that arm due to surgery and radiation. It tends to tighten up more than usual.) So a call to the doc was made and an appointment set for this past Thursday. I felt a bit sheepish about going and spent a great deal of mental energy coming up with a good explanation for why I was taking up an appointment slot because I 'stressed out' and unable to get rid of the tension in my neck and shoulder.

The appointment was uneventful and OT was recommended.

That evening Josh had a message on his cell phone from my surgeon that she had a question for me and needed me to call right away the next day. Upon calling and connecting with her nurse practitioner and answering a series of questions about the rash, it was decided that it was indeed shingles. (Great, I just aged about 15 years! Old people get shingles!) Upon investigation, shingles is fairly common after radiation. Wish I had known that!

So, now what exactly IS shingles? Shingles is dormant chicken pox that resides in nerve cells. When it's triggered, and 'they' don't really know what triggers it except maybe depressed immune system and stress, the virus moves out of the nerves and is usually evidenced on the skin as a rash (not always) and can very painful. It may seem strange to say, but YEA! It's shingles!! At least my troubles have an actual diagnosis and it's not stored up, unresolved tension. But I'll tell ya, now that I can connect the dots better... For days I was not sleeping well because of strange things going on, things like my arm consistently going numb, spasms in my back (my rhomboids), and an achey shoulder. It explains why my arm has been feeling heavy and tired. And probably I am quite tense in the shoulders trying to carry and manage the symptoms of this shingles-thing.

But the funny thing is, this time there's NOT a drug for this! Had I shown them the rash when it first showed up, they could've given me an antibiotic. And if it doesn't resolve soon, they have a drug to treat what I would presume to be early phases of postherpetic neuralgia. But we'll cross that bridge when/if we get there. Right now I'm just takin' it easy! Doctor's orders!! :)

I've got other pithy mostly non-treatment related thoughts that I'll put in another posting so this isn't so long.

Good news, good news!

Had my follow-up appointment with Dr. Campbell, the chemo guy. My concerns going into the appointment were that he'd tell me I'd have to keep the port in my chest for up to 1 more year, and that he'd 'strongly recommend' that I go on tamoxifen for 5 years. But I got good news for both! Yea!

The chest port is the 'convenient' device they (you know, 'they') installed under my skin near my collar bone so that instead of poking around for a vein in my arm at every treatment and blood draw, a poke in the port is a direct line to my jugular vein. It's convenient for the chemo folks, but no one else seems to know how to use it - or, sometimes, what it really is. That, and it's pretty goofy-lookin' - a 1 inch square bulge that stands a good 1/2 inch above the rest of my chest. Lovely! Dr. Campbell usually likes to keep it in for 6-12 months "just in case" (given my tumor staging), but a sympathetic nurse practitioner was in my corner today. So the port's coming out on Monday morning!! I can't believe I'm actually excited about a surgery. Weird.

As far as the tamoxifen... it's a drug that interferes with estrogen in the body. It's actually sometimes used for fertility issues (just what we don't need!) as it stimulates the ovaries to produce estrogen, but it also works to block the estrogen receptors in the cells. Because my tumor was estrogen-receptor positive (100%, thank you very much!), tamoxifen would be highly effective in stopping the growth of any estrogen-receptor positive cancer cells in my body. All well and good, except it also is just another foreign substance in my system creating potential nasty side-effects. So the question was: is the added benefit of taking the tamoxifen significant to warrant navigating side-effects for the next 5 years? Statistically, taking taxoxifen will reduce the chance of a recurrance by up to 50%, but if I only have a 5-10% higher risk of recurrance than the general population, then it only helps by about 2-7% - if I'm going the math correctly.

The nurse practitioner said she'd check with Dr. Campbell what exactly my 'numbers' looked like so I could have a good figure by which to base my decision. When she came back, she was very surprised by what Dr. Campbell had told her. His answer was that though my tumor was fairly large, we had treated it very aggressively - bilateral mastectomy, chemo, and radiation. So the chance of it coming back was already reduced significantly and that if I didn't want to take the drug, he could really argue against that decision. Yea! His response certainly made the decision easy.

So there we go. Just like that, I'm feeling completely free and clear of my cancer treatments. Hooray!

One to go!!

Tomorrow is my LAST radiation treatment!! Hooray! After that, I'm done, done - no more treatments. Reconstruction will happen in 6-12 months and follow-up visits once every 3-6 mo. for the next 5 years, but otherwise free of the whole oncology treatment department. Phew!

It's been a while since I did any updates so here goes: the hair is finally, actually, truly coming in - like real hair not just fuzzies. Think: Natalie Portman or Chenade O'Conner, at best. Last Friday I dared to go out without my hat on - amazing! Granted, it was kinda in a part of town where I'd fit right in with my shaven head and their dreadlocks, so it was a natural fit. I've been to the grocery store and to school without the hat, but at this point, a hat is more functional than an aesthetic issue - it's cold without it! The other day I was bawling in the car (for any number of reasons, right?) and Josh asked about my tears. My response: "It's all BREEZY around my neck!!" Such is life. I can't decide, on the other hand, whether to strive for the long hair of last year, or to stick with the low maintenance version I've come to appreciate. Long, higher maintenance and warm, or short, low maintenance and breezy? I'm certain I've ruled out the mullet, though it'd solve much of the dilemma.

Eyebrows are coming back, though it seems like all the ones I've been plucking for years are returning with a vengeance while the ones I'm currently coloring in seem a bit more slow growing.

Eyelashes - I've tried to mascara them, but to no avail. Soon, though, as I can actually see a whole line of small lashes marching across my eyelid. I've lost that gaunt, blank-slate, dark circles under the eyes look from chemo as well. Things are going back to the 'old normal'!

If I were to compare radiation and chemo, I'd say radiation is much easier in some ways. Chemo has this constant swing of symptoms to manage which is emotionally, psychologically, and physically exhausting. Radiation, on the other hand, is at least predictable - every day the same routine, the same side-effects (slowly increasing). On the flip side, chemo symptoms would generally resolve in a few days where radiation is definitely a cumulative effect. I was eager for Fridays to come around b/c no treatment on the weekend, but quickly learned the burning would still increase even without treatment.

The radiated area is finally starting to peel (or "desquamate" - a new word I've learned. You know, shedding of the squamous layer of your epidermis), but it's not the same looking peel as a general sunburn. My skin, over the course of treatment, had gotten dark polka-dots that eventually blended together. This is peeling off, but the skin below is not the healthy-looking pink of fresh skin. It's more of a fresh healthy skin with a pre-existing sunburn. So I don't know if this too will peel or what will happen. I don't even want to think what my internal organs look like!

Depending how the skin heals and if it thickens or tightens when it does, will determine if I'll need the lat flap for reconstruction (I'll let you look that up if you're interested. It borders on TMI for the faint of heart). Though it's not even been suggested that I would NOT have that done - it's generally the MO after radiation according to my perfectionistic plastic surgeon - I'm hoping that the skin will do so well that I'll be able to do just tissue expander/implant on this radiated side. While I'd like to think I'd be the exception to needing the lat flap after radiation, I also was under the impression I'd never get cancer. So my hopes are tainted with a bit of realism at the same time. All kidding aside, I'd really love to not have another huge surgery before this is all over with.

So there you go! Radiation: almost done Hair: almost in Skin: almost peeled off Hooray!!