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. :)
Wednesday, November 3, 2010
Wednesday, October 6, 2010
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'"
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'"
Thursday, June 3, 2010
'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?
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?
Monday, May 31, 2010
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 complet
ely '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!
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 complet
ely '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.
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.
Thursday, May 6, 2010
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!
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!
Thursday, April 22, 2010
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!!
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!!
Saturday, March 27, 2010
Radiation
I've finished 12 sessions of radiation already, so that's about 1/3 of the way. Yea! So far I have not much to report. I still take it easy and tire out quicker than I'd like, but nothing a nap can't cure. And I'm just starting to see the 'sunburn' show up - especially under my arm. I was glad when Friday arrived this week because now I have two days without radiation to hopefully give my skin a break. Aloe, aloe, aloe!
On another note, not related to radiation (imagine that!)... I still continue to lose hair! It's growing on my head, but I've lost a significant portion of my eyebrows now. One got left behind in Florida so if any of you spring-breakers down there find it, I'd love to have it back! (Eeeu!) So now I can draw on my expressions: happy brows, angry brows, etc. It sounds a bit like a Mr. Potato Head! I'm told to expect hair to start growing back 6 weeks after chemo and this past Wednesday was it, so bring it on!! This past Thursday marked 5 months of no hair - we shaved it on October 25. That's a lot of hat-wearing!
On another note, not related to radiation (imagine that!)... I still continue to lose hair! It's growing on my head, but I've lost a significant portion of my eyebrows now. One got left behind in Florida so if any of you spring-breakers down there find it, I'd love to have it back! (Eeeu!) So now I can draw on my expressions: happy brows, angry brows, etc. It sounds a bit like a Mr. Potato Head! I'm told to expect hair to start growing back 6 weeks after chemo and this past Wednesday was it, so bring it on!! This past Thursday marked 5 months of no hair - we shaved it on October 25. That's a lot of hat-wearing!
Sunday, March 21, 2010
The Future
Imagine, if you will (no, this isn't the beginning of a Twilight Zone episode, though maybe it'll turn out that way...) that the definition of 'future' was changed. I should explain that Josh & I have been challenged in the last little bit about what our future looks like, and then in church today I was challenged again. So here's what I've been thinking about lately:
What does "your future" mean to you? To me, I never gave it a second thought that I wouldn't live into my 80's at least (and there's nothing to say that I won't!). I figured I'd graduate my kids, do 'the 50's & 60's thing' whatever that looked like, age gracefully in my 70's and then die in my 80's. What if it's not like that? -- and this may turn morbid for some, so if you want to remain cheery, stop now!
What if the 'future' was suddenly your 'present.' That is to say, what if you suddenly realized that you would not live to graduate your kids and then 'do life' as a 50-80 year old? So let's bring it home: if you knew you would not live more than, say, 10 more years - a single decade, what would you do differently that you aren't (or are) doing now? What would you change about your family life or your work load or your spiritual life - or your spiritual journey? Could you say with full conviction and follow it up with your actions that Jesus "is the Christ, the Son of the Living God"? Or that you know Jesus died to be your Savior - to save you...from yourself, really - from your 'sinful' bent, specifically.
OK, move out of that aspect: would you travel more? Talk more... or less? Read more, or be an advocate for someone or something? Work less, take your kids out of school more? Give more away, or take up something? Take things more seriously or maybe less seriously? Would you pursue that which makes you happy or strive to improve someone else's life? What would you want to accomplish in 10 years? Do you need to accomplish anything? Would whatever you accomplish be tangible or intangible? What do you want to pass along in the next 10 years? Does it all match up with what Christ has for you?
How about this: name some thing that you'd like to have identified with your life. A butterfly that only lives a short time but is appreciated by so many for its beauty? A rock that is never changing and is solid to then end. A rubberband that adjust itself for anything. What about a video camera that doesn't miss a thing. A firework. A medication. A lamp. A lotion. If there was something in this world that you would want people to identify with you, what would it be, and why? What would God create you to be or change you to become? Jesus talked about us being salt. Hmmm.
Strange questions, I know, but I'm realizing that we cannot assume that we'll all live to our 80's or longer (duh!) no matter what our current, wonderful status is right at the moment. We cannot assume that the families we are building will remain indefinitely. Given this knowledge, what might change about how we live our lives? What would it look like to completely surrender to God's will? It's exciting to think that if I were to surrender to God's will completely and entirely I may not even recognize myself! That's the beauty and the freaky thing about it...I have ideas about what I want to do and become, but God's got so much more in store for me if I would just get out of the way!
God, move me out that I may become your creation not some lesser thing of my own design.
Hmmm. What exactly does that look like - and how does that work, exactly?
What does "your future" mean to you? To me, I never gave it a second thought that I wouldn't live into my 80's at least (and there's nothing to say that I won't!). I figured I'd graduate my kids, do 'the 50's & 60's thing' whatever that looked like, age gracefully in my 70's and then die in my 80's. What if it's not like that? -- and this may turn morbid for some, so if you want to remain cheery, stop now!
What if the 'future' was suddenly your 'present.' That is to say, what if you suddenly realized that you would not live to graduate your kids and then 'do life' as a 50-80 year old? So let's bring it home: if you knew you would not live more than, say, 10 more years - a single decade, what would you do differently that you aren't (or are) doing now? What would you change about your family life or your work load or your spiritual life - or your spiritual journey? Could you say with full conviction and follow it up with your actions that Jesus "is the Christ, the Son of the Living God"? Or that you know Jesus died to be your Savior - to save you...from yourself, really - from your 'sinful' bent, specifically.
OK, move out of that aspect: would you travel more? Talk more... or less? Read more, or be an advocate for someone or something? Work less, take your kids out of school more? Give more away, or take up something? Take things more seriously or maybe less seriously? Would you pursue that which makes you happy or strive to improve someone else's life? What would you want to accomplish in 10 years? Do you need to accomplish anything? Would whatever you accomplish be tangible or intangible? What do you want to pass along in the next 10 years? Does it all match up with what Christ has for you?
How about this: name some thing that you'd like to have identified with your life. A butterfly that only lives a short time but is appreciated by so many for its beauty? A rock that is never changing and is solid to then end. A rubberband that adjust itself for anything. What about a video camera that doesn't miss a thing. A firework. A medication. A lamp. A lotion. If there was something in this world that you would want people to identify with you, what would it be, and why? What would God create you to be or change you to become? Jesus talked about us being salt. Hmmm.
Strange questions, I know, but I'm realizing that we cannot assume that we'll all live to our 80's or longer (duh!) no matter what our current, wonderful status is right at the moment. We cannot assume that the families we are building will remain indefinitely. Given this knowledge, what might change about how we live our lives? What would it look like to completely surrender to God's will? It's exciting to think that if I were to surrender to God's will completely and entirely I may not even recognize myself! That's the beauty and the freaky thing about it...I have ideas about what I want to do and become, but God's got so much more in store for me if I would just get out of the way!
God, move me out that I may become your creation not some lesser thing of my own design.
Hmmm. What exactly does that look like - and how does that work, exactly?
Friday, March 12, 2010
Last of chemo, Disney, and Radiation
Ahh, back home from lovely Florida -- or more specifically, Disney. It seems to be an entity unto itself! We had a blast, but by about 1/2 way through our littlest ones were saying, "I don't want to go to Disney anymore!!" So we told them we were going to the zoo, aka Animal Kingdom. It seemed to work for Levi! I could go on and on about how much fun it was, but if you've been there, you know all that and if you haven't...well, you've probably heard a million people say how great it is, yes!? The nice part is that it's nothing like the usual amusement parks like any Six Flags or Cedar Point. It's much more experiential and (don't tell the kids) occasionally educational. They actually try to teach you something sometimes. Granted, I don't agree with Disney's philosophy on lots of issues, but the education I'm referring to is more about conservation issues - though again, it seems to be a meca for plastic and energy consumption. But I've learned they're at least 'trying' (in some respects) to be considerate of earth's resources.
As far as my treatments, I'm working out the last of the chemo issues - and it's not so pretty. My fingernails have finally 'bit it.' They kept saying that my nails would get nasty, and in the scheme of things, it's not really that bad, but my hands look like a construction workers. No offense to my hard working construction folks, but it's not very lady-like to have peeling, splitting ugly fingertips! What's happened is that the nail bed has dried up and separated from the nail itself. Very odd. One thumb nail has actually peeled off...from the bottom up. And a few others have disconnected at the top. Sigh. Could be worse!
Another strange issue I'm working though is sore muscles. I've got tremendous knots in my arms, which is nice for that bulky, I've-been-exercising look, but it's not very comfortable. And if my soreness is from vacuuming or cleaning a bathroom, that's kinda unusual also. Dehydration? Too much tension?? Who knows. I've made it my job this week to sleep and drink water/Propel. Not bad! It's not necessarily fixing the muscle thing, but making me feel better none-the-less.
And now...radiation. I went on the 25th or so of Feb. for 'mapping' which got me set up for the actual treatments. They had me lay on a foam or something in the position needed for treatments (arms overhead w/ head to one side) and then added a chemical into a bag around the foam in order to make an impression of my upper body. This hardened and is what I use to lay on during treatments. They also added three small tattoos (one under each arm and another over my sternum) which are 'landmarks' to help w/ positioning. Obviously positioning is critical in all this. Wouldn't want to zap the wrong thing!
While we were at Disney, the Dr. used a CT scan they did at the mapping to identify the angles and whatnot for the treatment. At my "first" appointment this week Wednesday they took some x-rays to see if I was in a good...you got it...position (where's Ms. Dale, my HS English teacher and her cursed thesaurus!) and then a dry-run of treatment for the doc to check. That turned out fine so they did the actual first treatment. Treatment itself takes less than five minutes.
They said as far as side-effects, the biggest is dry, irritated skin -- think sunburn. And fatigue. This all happens in about the 2nd or 3rd week. So far, after treatments 1 & 2 I did done nothing but sleep. Today was better, so I'm thinking that was simply recovery time from moving and traveling. Noah came home Wednesday and asked, "Can you move??" My answer, "Yes, but I don't want to." Noah: "Sweet! I get to make dinner. I'll start a movie, too!" That's my boy! I think he thought I'd be down for the count until the end of April. Sorry, Buddy!
Radiation treatments are every day M-F for 33 'sessions' or until the end of April.
As far as my treatments, I'm working out the last of the chemo issues - and it's not so pretty. My fingernails have finally 'bit it.' They kept saying that my nails would get nasty, and in the scheme of things, it's not really that bad, but my hands look like a construction workers. No offense to my hard working construction folks, but it's not very lady-like to have peeling, splitting ugly fingertips! What's happened is that the nail bed has dried up and separated from the nail itself. Very odd. One thumb nail has actually peeled off...from the bottom up. And a few others have disconnected at the top. Sigh. Could be worse!
Another strange issue I'm working though is sore muscles. I've got tremendous knots in my arms, which is nice for that bulky, I've-been-exercising look, but it's not very comfortable. And if my soreness is from vacuuming or cleaning a bathroom, that's kinda unusual also. Dehydration? Too much tension?? Who knows. I've made it my job this week to sleep and drink water/Propel. Not bad! It's not necessarily fixing the muscle thing, but making me feel better none-the-less.
And now...radiation. I went on the 25th or so of Feb. for 'mapping' which got me set up for the actual treatments. They had me lay on a foam or something in the position needed for treatments (arms overhead w/ head to one side) and then added a chemical into a bag around the foam in order to make an impression of my upper body. This hardened and is what I use to lay on during treatments. They also added three small tattoos (one under each arm and another over my sternum) which are 'landmarks' to help w/ positioning. Obviously positioning is critical in all this. Wouldn't want to zap the wrong thing!
While we were at Disney, the Dr. used a CT scan they did at the mapping to identify the angles and whatnot for the treatment. At my "first" appointment this week Wednesday they took some x-rays to see if I was in a good...you got it...position (where's Ms. Dale, my HS English teacher and her cursed thesaurus!) and then a dry-run of treatment for the doc to check. That turned out fine so they did the actual first treatment. Treatment itself takes less than five minutes.
They said as far as side-effects, the biggest is dry, irritated skin -- think sunburn. And fatigue. This all happens in about the 2nd or 3rd week. So far, after treatments 1 & 2 I did done nothing but sleep. Today was better, so I'm thinking that was simply recovery time from moving and traveling. Noah came home Wednesday and asked, "Can you move??" My answer, "Yes, but I don't want to." Noah: "Sweet! I get to make dinner. I'll start a movie, too!" That's my boy! I think he thought I'd be down for the count until the end of April. Sorry, Buddy!
Radiation treatments are every day M-F for 33 'sessions' or until the end of April.
Friday, February 19, 2010
A new friend, hearing, and George
I have a new friend. It's a very one-sided relationship, but it's working for us both. It's name is Darvocet. I take it, it gives pain relief. It also makes me dizzy which makes me puke, but you have to take the good with the bad, right?
Tuesday night the congestion in my head and ears started to effect my hearing. As I understand, sinus issues are one of those side-effects of taxotere, but one you just kinda have to deal with and get through. Wednesday evening found me in the med. center with throbbing ear pain (thank you Janna and Bev for helping!) A couple hours later I'm on amox. and darvocet and sleeping like a babe. Unfortunately even today (Friday) my hearing and dizziness hasn't resolved. I imagine that due to chemo, my healing factor is down so much that it'll take a while. I'm confident that some time today, the goo'll slide away from my eardrum and I'll be back on track! Knock on wood.
Which brings us to hearing. God continues to add to my areas of empathy - this time: those with hearing troubles. I've learned that I rely a great deal on periferal input when having conversations. To be able to glean feedback from your environment through sounds and not just sight has a huge impact on my ability to have a conversation. So in a short conversation with someone across the room at a gathering not only can I not tell how loudly I am talking and if I'm communicating clearly, but I can't get auditory feedback from the room to know if other people are hmm,mmm-ing/tuning in that I should pay attention to additional people. Plus the frequencies that I can hear are over-the-top distracting and interfering with all the mental energy I'm putting out (and when I'm not feeling well and responding to my environment effectively, I tend to mentally shut down, so it's not saying much!) It's exhausting! Another area of growth and learning for Amanda!
In the meantime, LOTS of rest. Yesterday I emerged from the bedroom for less than an hour total probably. Josh on the other hand, made a fantastic meal of prime rib, glazed carrots, spinach/cranberry/avocado salad, cheesy potatoes, etc., etc. He spent the morning moving stuff and the afternoon/evening in the kitchen. You see, we had our neighbors over for a farewell dinner last night. If you have not had your neighbors over as a collective group for dinner, I highly recommend it! In our neighborhood, we talk and enjoy our neighbors individually (when we're not hibernating), but we had never gathered them all at the same time. In our next neighborhood, we're going to have everyone over shortly after we move in. It just makes sense.
And finally, George. We found a home for George! Barring any disaster at pick-up tonight, he'll be the happy resident on a 20 acre horse farm out in Standale. Hooray! Though cat adoption and cancer don't seem intricately linked, there's certainly a connection between stress & anxiety and slow recovery. So to have George safely adopted means less anxiety and greater healing. Knock on wood, again.
Thank you, God for teaching moments and small blessings.
Tuesday night the congestion in my head and ears started to effect my hearing. As I understand, sinus issues are one of those side-effects of taxotere, but one you just kinda have to deal with and get through. Wednesday evening found me in the med. center with throbbing ear pain (thank you Janna and Bev for helping!) A couple hours later I'm on amox. and darvocet and sleeping like a babe. Unfortunately even today (Friday) my hearing and dizziness hasn't resolved. I imagine that due to chemo, my healing factor is down so much that it'll take a while. I'm confident that some time today, the goo'll slide away from my eardrum and I'll be back on track! Knock on wood.
Which brings us to hearing. God continues to add to my areas of empathy - this time: those with hearing troubles. I've learned that I rely a great deal on periferal input when having conversations. To be able to glean feedback from your environment through sounds and not just sight has a huge impact on my ability to have a conversation. So in a short conversation with someone across the room at a gathering not only can I not tell how loudly I am talking and if I'm communicating clearly, but I can't get auditory feedback from the room to know if other people are hmm,mmm-ing/tuning in that I should pay attention to additional people. Plus the frequencies that I can hear are over-the-top distracting and interfering with all the mental energy I'm putting out (and when I'm not feeling well and responding to my environment effectively, I tend to mentally shut down, so it's not saying much!) It's exhausting! Another area of growth and learning for Amanda!
In the meantime, LOTS of rest. Yesterday I emerged from the bedroom for less than an hour total probably. Josh on the other hand, made a fantastic meal of prime rib, glazed carrots, spinach/cranberry/avocado salad, cheesy potatoes, etc., etc. He spent the morning moving stuff and the afternoon/evening in the kitchen. You see, we had our neighbors over for a farewell dinner last night. If you have not had your neighbors over as a collective group for dinner, I highly recommend it! In our neighborhood, we talk and enjoy our neighbors individually (when we're not hibernating), but we had never gathered them all at the same time. In our next neighborhood, we're going to have everyone over shortly after we move in. It just makes sense.
And finally, George. We found a home for George! Barring any disaster at pick-up tonight, he'll be the happy resident on a 20 acre horse farm out in Standale. Hooray! Though cat adoption and cancer don't seem intricately linked, there's certainly a connection between stress & anxiety and slow recovery. So to have George safely adopted means less anxiety and greater healing. Knock on wood, again.
Thank you, God for teaching moments and small blessings.
Thursday, February 11, 2010
Party Time!!
I have to say, I have an amazing husband! And he knows I need my amazing friends.
Today was my last chemo treatment. Hazaaah!! I'll admit I almost didn't go. I've noticed a pattern over the last 4 treatments that on the day/night before not only do I go into a depression-like funk, but sometimes I actually start to feel like I've already begun treatment. The brain's an amazing thing, huh? So needless to say, yesterday was a horrible day for me, but I've got an amazing husband who recognized what I need & insisted on helping me, and an amazing community of friends that continue to support our family (thank you Visser family!). They got me - us - through it. It was very good for them to help with the kids yesterday.
Today I woke up overly anxious. I couldn't get out the door soon enough to get it over with. My poor doctors usually get 'punchy Amanda,' (the sarcastic, pessimistic version) but they're good sports about it - at least at 'bedside.' Maybe they all walk out wiping their brow and pulling faces, I'll never know! Josh gave me a great 'silver-lining' pep talk on the way there. He's good at it and I've recommended the talk to a few people already :) It helped, too, that I was able to get a good chunk of time with my sister Lisa who went with me today. So I did it. I finished chemo!
AND THEN....
When I got home (can I just tell you how great Josh is??) there were flowers and valentine chocolates waiting (which I ate [the chocolates, that is] because tomorrow I won't be able to taste them) and a note saying he's got a babysitter and we're going out tonight. What a man! But it gets better... He surprised me by inviting a bunch of friends and my sister to meet us at the restaurant!! I have never felt so special and pleased to celebrate a gucky day in my life! Thank you everyone. Thank you, Josh.
(Josh started his own blog yesterday: "My wife has cancer" I haven't googled the topic (and maybe it'll have a different purpose), but I'm not sure there's many blogs about what it's like to be the support system for a spouse going through cancer. Maybe there is. It's a brand new blog so there's nothing posted just yet.)
So enough about my wonderful hubby - focus, Amanda, it's a cancer blog.
The Plan: tomorrow I'll go for the WBC-boosting Neulasta shot (because it didn't work out not to) and then mentally check out for the weekend. Josh'll move much of the house to storage and our 'new home' over the weekend, we'll manage side-effects all next week, move out and then we're done-done with this round of chemo. I cannot wait!
So we've done a little partying, now to run on the warm beach :)
Oh! We need a home for George the cat, STAT! He needs a permanent or temporary home before we move out on the 21st. Here's a pic and if you (or any friends) wanna adopt or borrow, please let us know. He'll be put down if he's brought to the shelter, I'm quite certain, and he's too nice a cat for that, poor thing.
Today was my last chemo treatment. Hazaaah!! I'll admit I almost didn't go. I've noticed a pattern over the last 4 treatments that on the day/night before not only do I go into a depression-like funk, but sometimes I actually start to feel like I've already begun treatment. The brain's an amazing thing, huh? So needless to say, yesterday was a horrible day for me, but I've got an amazing husband who recognized what I need & insisted on helping me, and an amazing community of friends that continue to support our family (thank you Visser family!). They got me - us - through it. It was very good for them to help with the kids yesterday.
Today I woke up overly anxious. I couldn't get out the door soon enough to get it over with. My poor doctors usually get 'punchy Amanda,' (the sarcastic, pessimistic version) but they're good sports about it - at least at 'bedside.' Maybe they all walk out wiping their brow and pulling faces, I'll never know! Josh gave me a great 'silver-lining' pep talk on the way there. He's good at it and I've recommended the talk to a few people already :) It helped, too, that I was able to get a good chunk of time with my sister Lisa who went with me today. So I did it. I finished chemo!
AND THEN....
When I got home (can I just tell you how great Josh is??) there were flowers and valentine chocolates waiting (which I ate [the chocolates, that is] because tomorrow I won't be able to taste them) and a note saying he's got a babysitter and we're going out tonight. What a man! But it gets better... He surprised me by inviting a bunch of friends and my sister to meet us at the restaurant!! I have never felt so special and pleased to celebrate a gucky day in my life! Thank you everyone. Thank you, Josh.
(Josh started his own blog yesterday: "My wife has cancer" I haven't googled the topic (and maybe it'll have a different purpose), but I'm not sure there's many blogs about what it's like to be the support system for a spouse going through cancer. Maybe there is. It's a brand new blog so there's nothing posted just yet.)
So enough about my wonderful hubby - focus, Amanda, it's a cancer blog.
The Plan: tomorrow I'll go for the WBC-boosting Neulasta shot (because it didn't work out not to) and then mentally check out for the weekend. Josh'll move much of the house to storage and our 'new home' over the weekend, we'll manage side-effects all next week, move out and then we're done-done with this round of chemo. I cannot wait!
So we've done a little partying, now to run on the warm beach :)
Oh! We need a home for George the cat, STAT! He needs a permanent or temporary home before we move out on the 21st. Here's a pic and if you (or any friends) wanna adopt or borrow, please let us know. He'll be put down if he's brought to the shelter, I'm quite certain, and he's too nice a cat for that, poor thing.
Wednesday, February 3, 2010
Some week!
Well last week was a trip to the ER. This week is a double-trip to the kids' doctor's office. JUST the place I do NOT want to be right now.
Esther and Levi both have ear infections. Esther went in on Monday. Levi was checked that day, but was fine. Naturally. But by Tuesday night he, too, was complaining of a painful ear. So...antibiotics for everyone! Thankfully we've discovered the free meds from Meijer. Yea! My cipro and their amox. was free! Makes you wonder who's paying for them. I'm guessing NOT Meijer.
This past weekend we - scratch that - Josh and a couple of buddies (thank you George and Dave!) moved some - scratch that - lots of furniture out of the basement, stuff from the shed and garage, and some from the storage area over to the new storage unit. (I sound like we should be on an episode of "Clean House"!) This Friday a few other friends (thank Dirk/Kristen and Dave/Sally!) will come spend a good chunk of time helping box up stuff all over the house. The following week, we'll probably move stuff/furniture to the Kenyons and then the week after that - we're out! And homeless! Yea! Oh ya, and have a round of chemo in there, too.
Even though it's the last round of chemo, I still dread the thought of going. I was bemoaning my situation this week. You know, for being a primarily (though not entirely) 'female' disease, it certainly has a way of making you feel less womanly. And why does it take so long to treat it when theoretically the cancer's gone following surgery? Why can an antibiotic kill a virus/bacteria in 5-10 days, and it takes months and months and all your hair falling out for a cancer cell to die? I can't imagine the chemo drugs are that much less hefty. Sigh. One to go. Almost done. And I can almost see the "5:00 shadow-ish" look of my hair without squinting into the mirror. So those are all good things.
Did you know...
Read a devotional this week (My Utmost for His Highest again). It put it so plainly and I don't know if I've heard it said so clearly - our redemption is not for our sake, that is for us to be closer to God, but it's for God's sake - so that he may be glorified. I always kinda thought salvation was for us to get 'out of the muck' but, Hello!, our salvation is for God that we may glorify him. Imagine that...it's not about me. Funny thing. :) We so often strive to 'save' someone when in reality we should be redeeming them for God.
Esther and Levi both have ear infections. Esther went in on Monday. Levi was checked that day, but was fine. Naturally. But by Tuesday night he, too, was complaining of a painful ear. So...antibiotics for everyone! Thankfully we've discovered the free meds from Meijer. Yea! My cipro and their amox. was free! Makes you wonder who's paying for them. I'm guessing NOT Meijer.
This past weekend we - scratch that - Josh and a couple of buddies (thank you George and Dave!) moved some - scratch that - lots of furniture out of the basement, stuff from the shed and garage, and some from the storage area over to the new storage unit. (I sound like we should be on an episode of "Clean House"!) This Friday a few other friends (thank Dirk/Kristen and Dave/Sally!) will come spend a good chunk of time helping box up stuff all over the house. The following week, we'll probably move stuff/furniture to the Kenyons and then the week after that - we're out! And homeless! Yea! Oh ya, and have a round of chemo in there, too.
Even though it's the last round of chemo, I still dread the thought of going. I was bemoaning my situation this week. You know, for being a primarily (though not entirely) 'female' disease, it certainly has a way of making you feel less womanly. And why does it take so long to treat it when theoretically the cancer's gone following surgery? Why can an antibiotic kill a virus/bacteria in 5-10 days, and it takes months and months and all your hair falling out for a cancer cell to die? I can't imagine the chemo drugs are that much less hefty. Sigh. One to go. Almost done. And I can almost see the "5:00 shadow-ish" look of my hair without squinting into the mirror. So those are all good things.
Did you know...
Read a devotional this week (My Utmost for His Highest again). It put it so plainly and I don't know if I've heard it said so clearly - our redemption is not for our sake, that is for us to be closer to God, but it's for God's sake - so that he may be glorified. I always kinda thought salvation was for us to get 'out of the muck' but, Hello!, our salvation is for God that we may glorify him. Imagine that...it's not about me. Funny thing. :) We so often strive to 'save' someone when in reality we should be redeeming them for God.
Thursday, January 28, 2010
Caught a Bug
I made the mistake of taking my temperature yesterday. But I learned that they take 'temperatures' very seriously over in the oncology department!
I was feeling the usual aches that come the days following treatment, but for whatever reason, they were different aches. That, combined with the fact that usually on Tuesday/Wednesday I'm feeling better, and I was feeling pretty crappy. So on a whim I took my temp. 100.5 Low-grade, but in chemo-world that's the red-flag number. I phoned the doctors office and told them the temp and asked if I should freak out or if there was something I needed to do. Given the fact, too that I didn't have the 'day after shot' of neulasta to boost the white blood count I think caused concern. I was instructed to go get my blood drawn to check the profile ASAP. Meanwhile I remembered I could take an ibuprofen and was feeling much better, thank you very much. So I went home, took a nap, and waited for them to tell me if I should 'freak out.'
Josh woke me up soon after and told me we were off the the ER. Lovely. You can imagine how excited we were for that! Long story short, I got a heavy-duty dose of antibiotics and sent home with two other antibiotics and strict instructions not to go near germs, to come in immediately if my temp "spiked," (to a whoppin' 101) and not to take an more ibuprofen/tylenol in case it was masking any infections.
So while I say I wish I never took my temp - that I shoulda just taken an ibuprofen, gotten a good shoulder rub and called it good - their response to my low temp was significant. Apparently when your WBC counts are low and you show signs of illness, it can get out of hand in a hurry. So I appreciate their precautions. I suppose I'm just not accustomed to so much fuss over a few stiff muscles and a headache.
Today I'm feeling significantly better, so I gotta believe I really was fighting something!
Met with the radiation oncologist, Dr. Kastner, today also. Looks like the plan is that after my last chemo on Feb. 11 I'll go downstairs for 'mapping.' I'm not quite sure what that means other than they'll add a few tatoos on me (sorry, no roses or "I love Mom" - just tiny dots) and begin the creation of the virtual me that they'll use to figure the tangents, etc for zapping the potentially cancerous lymph nodes and tissues. Yes, it'll be as fun as it sounds. Treatments won't actually start until mid-March, however, because we're finally taking the kids on the Disney trip we promised when Josh started seminary. Yea!
Here's how that went:
Dad's going to seminary: ok
We'll go to Disney when he's done: YEA
Dad has an extra internship this summer: boo
So we'll go at the end of summer: YEA
But Mom got cancer and needs surgery: boo
So we'll go in between treatments: YEA
Gotta love it!
I was feeling the usual aches that come the days following treatment, but for whatever reason, they were different aches. That, combined with the fact that usually on Tuesday/Wednesday I'm feeling better, and I was feeling pretty crappy. So on a whim I took my temp. 100.5 Low-grade, but in chemo-world that's the red-flag number. I phoned the doctors office and told them the temp and asked if I should freak out or if there was something I needed to do. Given the fact, too that I didn't have the 'day after shot' of neulasta to boost the white blood count I think caused concern. I was instructed to go get my blood drawn to check the profile ASAP. Meanwhile I remembered I could take an ibuprofen and was feeling much better, thank you very much. So I went home, took a nap, and waited for them to tell me if I should 'freak out.'
Josh woke me up soon after and told me we were off the the ER. Lovely. You can imagine how excited we were for that! Long story short, I got a heavy-duty dose of antibiotics and sent home with two other antibiotics and strict instructions not to go near germs, to come in immediately if my temp "spiked," (to a whoppin' 101) and not to take an more ibuprofen/tylenol in case it was masking any infections.
So while I say I wish I never took my temp - that I shoulda just taken an ibuprofen, gotten a good shoulder rub and called it good - their response to my low temp was significant. Apparently when your WBC counts are low and you show signs of illness, it can get out of hand in a hurry. So I appreciate their precautions. I suppose I'm just not accustomed to so much fuss over a few stiff muscles and a headache.
Today I'm feeling significantly better, so I gotta believe I really was fighting something!
Met with the radiation oncologist, Dr. Kastner, today also. Looks like the plan is that after my last chemo on Feb. 11 I'll go downstairs for 'mapping.' I'm not quite sure what that means other than they'll add a few tatoos on me (sorry, no roses or "I love Mom" - just tiny dots) and begin the creation of the virtual me that they'll use to figure the tangents, etc for zapping the potentially cancerous lymph nodes and tissues. Yes, it'll be as fun as it sounds. Treatments won't actually start until mid-March, however, because we're finally taking the kids on the Disney trip we promised when Josh started seminary. Yea!
Here's how that went:
Dad's going to seminary: ok
We'll go to Disney when he's done: YEA
Dad has an extra internship this summer: boo
So we'll go at the end of summer: YEA
But Mom got cancer and needs surgery: boo
So we'll go in between treatments: YEA
Gotta love it!
Thursday, January 21, 2010
Chemo 7: Done!
Well, it's in the system anyway. We decided to do a little bit of steroids. She gave me the dose during chemo that I've gotten in the past, I'll take 2 mg twice on Friday & Saturday, then 2 mg once on Sun & Monday. I think. Anyway, they're working on the 'taper' because that's what apparently causes the emotional crash. The nurse practitioner said that for patients with lymphoma, they get 100 mg. for treatment (I don't know what I was given, but that sounds like a lot given that my 'taper meds' are only 4 mg.) and then they don't get ANY taper. THAT'll mess with your system! Again another humbling experience to hear that after I'm going round and round trying to get dosages so my hands don't hurt. Nice, Amanda.
......
Josh picked up My Utmost for His Highest (online link) by Oswalk Chambers (Amazon) again and so every so often I read it also. If you've never read any of it, I highly recommend it! Here's one that struck me as of late:
VISION AND DARKNESS
from myutmost.org
"An horror of great darkness fell upon him." Genesis 15:12
Whenever God gives a vision to a saint, He puts him, as it were, in the shadow of His hand, and the saint's duty is to be still and listen. There is a darkness which comes from excess of light, and then is the time to listen. Genesis 16 is an illustration of listening to good advice when it is dark instead of waiting for God to send the light. When God gives a vision and darkness follows, wait. God will make you in accordance with the vision He has given if you will wait His time. Never try and help God fulfil His word. Abraham went through thirteen years of silence, but in those years all self-sufficiency was destroyed; there was no possibility left of relying on common-sense ways. Those years of silence were a time of discipline, not of displeasure. Never pump up joy and confidence, but stay upon God (cf. Isaiah 50:10,11).
Have I any confidence in the flesh? Or have I got beyond all confidence in myself and in men and women of God; in books and prayers and ecstasies; and is my confidence placed now in God Himself, not in His blessings? "I am the Almighty God" - El-Shaddai, the Father-Mother God. The one thing for which we are all being disciplined is to know that God is real.
And so we wait in our "time of discipline." Josh & I were talking about our church planting plans 4 months ago and it felt so right and God-ordained. And now here we are in this 'desert.' What is God working out in our family? In me? In my kids and family? What will it take for me to know that God is real? What else will He teach me? Time to read Gen 16 to learn what's in there.
.....
My feet and lips are already tingly so I'm back on the couch sipping cool drinks with my feet propped on pillows. Noah's having a slumber birthday party - watching the movie 9. Not a bad gig for the moment! The comments these boys make - throughout the ENTIRE movie - are sometimes hilarious!
......
Josh picked up My Utmost for His Highest (online link) by Oswalk Chambers (Amazon) again and so every so often I read it also. If you've never read any of it, I highly recommend it! Here's one that struck me as of late:
VISION AND DARKNESS
from myutmost.org
"An horror of great darkness fell upon him." Genesis 15:12
Whenever God gives a vision to a saint, He puts him, as it were, in the shadow of His hand, and the saint's duty is to be still and listen. There is a darkness which comes from excess of light, and then is the time to listen. Genesis 16 is an illustration of listening to good advice when it is dark instead of waiting for God to send the light. When God gives a vision and darkness follows, wait. God will make you in accordance with the vision He has given if you will wait His time. Never try and help God fulfil His word. Abraham went through thirteen years of silence, but in those years all self-sufficiency was destroyed; there was no possibility left of relying on common-sense ways. Those years of silence were a time of discipline, not of displeasure. Never pump up joy and confidence, but stay upon God (cf. Isaiah 50:10,11).
Have I any confidence in the flesh? Or have I got beyond all confidence in myself and in men and women of God; in books and prayers and ecstasies; and is my confidence placed now in God Himself, not in His blessings? "I am the Almighty God" - El-Shaddai, the Father-Mother God. The one thing for which we are all being disciplined is to know that God is real.
And so we wait in our "time of discipline." Josh & I were talking about our church planting plans 4 months ago and it felt so right and God-ordained. And now here we are in this 'desert.' What is God working out in our family? In me? In my kids and family? What will it take for me to know that God is real? What else will He teach me? Time to read Gen 16 to learn what's in there.
.....
My feet and lips are already tingly so I'm back on the couch sipping cool drinks with my feet propped on pillows. Noah's having a slumber birthday party - watching the movie 9. Not a bad gig for the moment! The comments these boys make - throughout the ENTIRE movie - are sometimes hilarious!
Tuesday, January 19, 2010
Eeeee!
Hear me screaming like a school girl?? That's because I found fuzz on my head!! Yea! It was confirmed by Josh that I wasn't seeing things or looking at a funny reflection in the mirror: I have fuzz on my head where before there was none. Aaaaaahhhhh! I have no idea why it's there because this taxotere drug seems to rip through my system, but if it's leaving my follicles in tact, I'm not complaining. Now.... how should I arrange the fuzz today? Hmmm. :)
All in all, the last couple of weeks have been pretty uneventful. I tried to do 'normal' last week and petered out by Friday. So...back on the couch playing Wii Boom Bloks again. Nothin' wrong with that.
We rented a small storage unit on Wolverine & Belding so we'll start boxing stuff up and bringing it over there in small loads since Josh goes right past there to work all the time. We're shooting to be out of the house by mid to late February with a few big moves to the storage unit and the Kenyons in between (did I mention we'll be at the Kenyon's? You know us, if there's a party to be had, we'll have it at the Kenyon's! How apropo that we'd move in for a while!). Don't worry, if we need help, we know how to find you - any of you - no one will be safe! Just kidding! Closing on the house will be on the 29th. The radon test, which came back high, was taken care of over the weekend.
So let's talk about radon - another good cancer topic. Radon's a odorless, tasteless, invisible gas released by decomposing matter in the ground. Usually it dissipates, but if it doesn't, levels over 4 are dangerous (sorry don't know the unit of measure for radon gas. Something per cubic something??). Radon gas is believed to be the second-most cause of lung cancer, so you can see why it's such a concern. We've always had levels of about 3something and felt 'when we could afford it' we'd take care of it (kinda like waiting to have kids until you can 'afford' them, huh? Not gonna happen). To get rid of the gas, a pipe & fan can be installed that runs from the basement out the roof somewhere which can be costly. What the new, soon-to-be owners of our house learned is that with our high-efficiency furnace we had put in a few years ago, it creates a vacuum trapping the gas in the basement/house. To fix this all that needed to be done was to drill a big hole in the basement foundation near the furnace and run a pipe up outside the house to the roofline. The hole releases the pressure creating a negative vacuum (I think) that draws everything to that pipe and therefore out to the outside. We'll do one or two more tests to see if it worked, but we're pretty confident. If not, we'll have to go with the more expensive solution instead.
So that's been our week. I'm dreading Thursday as it's another treatment. I'll call the nurse again today to ask about taking the steroids this time. It certainly cleared up the burning hand issue, but Josh really didn't like dealing with me on steroids. He figured I probably didn't realize how low I actually got. So like me: deny anything negative. So I'll ask about that. The other question for the nurse is about my sinuses/mouth. My tongue is the obvious problem, but I noticed that my sinuses seemed to get 'burned' and takes a long time to recover. Such tender tissue - will it survive?
But if my hair's surviving... I'm sure there's a drug for all the other stuff. :)
All in all, the last couple of weeks have been pretty uneventful. I tried to do 'normal' last week and petered out by Friday. So...back on the couch playing Wii Boom Bloks again. Nothin' wrong with that.
We rented a small storage unit on Wolverine & Belding so we'll start boxing stuff up and bringing it over there in small loads since Josh goes right past there to work all the time. We're shooting to be out of the house by mid to late February with a few big moves to the storage unit and the Kenyons in between (did I mention we'll be at the Kenyon's? You know us, if there's a party to be had, we'll have it at the Kenyon's! How apropo that we'd move in for a while!). Don't worry, if we need help, we know how to find you - any of you - no one will be safe! Just kidding! Closing on the house will be on the 29th. The radon test, which came back high, was taken care of over the weekend.
So let's talk about radon - another good cancer topic. Radon's a odorless, tasteless, invisible gas released by decomposing matter in the ground. Usually it dissipates, but if it doesn't, levels over 4 are dangerous (sorry don't know the unit of measure for radon gas. Something per cubic something??). Radon gas is believed to be the second-most cause of lung cancer, so you can see why it's such a concern. We've always had levels of about 3something and felt 'when we could afford it' we'd take care of it (kinda like waiting to have kids until you can 'afford' them, huh? Not gonna happen). To get rid of the gas, a pipe & fan can be installed that runs from the basement out the roof somewhere which can be costly. What the new, soon-to-be owners of our house learned is that with our high-efficiency furnace we had put in a few years ago, it creates a vacuum trapping the gas in the basement/house. To fix this all that needed to be done was to drill a big hole in the basement foundation near the furnace and run a pipe up outside the house to the roofline. The hole releases the pressure creating a negative vacuum (I think) that draws everything to that pipe and therefore out to the outside. We'll do one or two more tests to see if it worked, but we're pretty confident. If not, we'll have to go with the more expensive solution instead.
So that's been our week. I'm dreading Thursday as it's another treatment. I'll call the nurse again today to ask about taking the steroids this time. It certainly cleared up the burning hand issue, but Josh really didn't like dealing with me on steroids. He figured I probably didn't realize how low I actually got. So like me: deny anything negative. So I'll ask about that. The other question for the nurse is about my sinuses/mouth. My tongue is the obvious problem, but I noticed that my sinuses seemed to get 'burned' and takes a long time to recover. Such tender tissue - will it survive?
But if my hair's surviving... I'm sure there's a drug for all the other stuff. :)
Friday, January 8, 2010
Out of the fog
After many days of not feeling like myself and feeling sorry for whatever 'self' I was, I'm glad to report the fog has lifted!
Note to self: steroids, bad!
And... I make a very bad druggy.
I was humbled today. I was reminded by a very good friend of my blessings and my short-comings. It reiterated what I was reading about 'suffering' (probably not a good topic when feeling sorry for one's self!) - that growth comes out of suffering.
I am not an empathetic person. But with each experience, each bit of suffering, I'm taught to be more empathetic. I can appreciate how one might feel when they see themselves as 'different'; I have a small taste of what it may be like to not be able to use your hands like you want to; I can say, "I know exactly what you mean!" when I hear that someone struggles with depression symptoms, or lives every day with medical concerns. At the same time, while I think that I can say, "ya, me too," I know that I can never fully walk in another's shoes, but I'm learning that I need to quit talking and start listening better.
I struggle, yes. But it's a struggle for a little while. My prayer is that my small bit of suffering may stay with me so that I may never forget the lessons I am learning as a result.
Note to self: steroids, bad!
And... I make a very bad druggy.
I was humbled today. I was reminded by a very good friend of my blessings and my short-comings. It reiterated what I was reading about 'suffering' (probably not a good topic when feeling sorry for one's self!) - that growth comes out of suffering.
I am not an empathetic person. But with each experience, each bit of suffering, I'm taught to be more empathetic. I can appreciate how one might feel when they see themselves as 'different'; I have a small taste of what it may be like to not be able to use your hands like you want to; I can say, "I know exactly what you mean!" when I hear that someone struggles with depression symptoms, or lives every day with medical concerns. At the same time, while I think that I can say, "ya, me too," I know that I can never fully walk in another's shoes, but I'm learning that I need to quit talking and start listening better.
I struggle, yes. But it's a struggle for a little while. My prayer is that my small bit of suffering may stay with me so that I may never forget the lessons I am learning as a result.
Tuesday, January 5, 2010
Treatment 6: Ahhh, baking soda!
I can't say that I'm enjoying this any more. I guess I never truely 'enjoyed' it, but tolerated it fine. I'm starting to lose interest.
Treatment 6. It's been said quite a bit lately, "At least it's only temporary!" Temporary cruds, temporary baldness, temporary eyelash loss, temporary swollen tongue, temporary burning hands. I find little comfort in such words, as true as they may be. Though I should qualify that there are thousands and millions of other people far worse off than I - suffering, starving, scared, lonely, grieving, hopeless, helpless. I've reminded myself many times the past few days that I must keep the end result (whatever God sees that to be) ahead of me rather than focusing on the immediate struggle. The 'whys' don't matter - I cannot begin to comprehend the 'whys' of things that happen in our world; it's 'to what end' that I need to remember. I'm writing it mostly to keep reminding myself more than to actually give new information.
I've spent more time on the couch and sleeping these past 5 days than I think I have since surgery. Is it the steroids that I'm taking to help with side-effects or is it the treatment itself? Would I be better off just dealing with the side-effects and skip the steroids? I cried at the Family Fare Pharmacy. That can't be normal. My tongue/mouth is no better off than last time, though I will say my eyelids didn't swell and I'm not sure if my hands are a little better this time, so maybe the steroids are good.
Emotionally I tell Josh not to look at me b/c I'll cry. The lady at Family Fare was telling me her breast cancer story and giving advice (which is why I cried), but it's still not a place you want to be when you fall apart. This afternoon I was crying because I always figured I'd be like my mother - always basically healthy. Then there's the struggle of 'wants': I so want to be that nurturing, warm, connected mother and wife, but at the same time I intensely want to hole away and become a hermit. ... I was telling Josh this morning that I cannot distinguish between sounds in the house: the lunch bags rustling in the kitchen are equally loud and 'important' to my brain as my dear Levi trying to tell me something 1 foot from my face. The dog walking across the floor commands as much of my mental attention as a question from Josh. I tried to make an appointment over the phone today and had to ask two or three times for the scheduler to repeat why she was calling and what she needed to schedule. Steroids or general treatment issues? We shall see.
On a funnier side, my appetite is quite interesting. Since I've got the tongue issues, keep in mind that everything I eat tastes pretty much like wax. And I do mean everything. Tonight I roasted some garlic and toasted bread with gouda cheese for a little flavor. Then I proceeded to eat the roasted garlic plain - right off my knife. Can't say I've done that before! Earlier it was a craving (at 1 a.m.) for a Whopper Jr, light mayo with all the fixings. And I've eaten so many fried egg & toasts (with more salt than usual) that I've run out of eggs - OK, so that makes a dozen, right? Ha! Anyway, it may not seem so weird, but given it all tastes like wax... I keep hoping something'll hit the spot!
I, Amanda VanTil, the non-planner, non-goal setting, non-party-throwing person wants to party with lots of food and laughter when this is all over. And then run on a warm beach. Anyone wanna join me? :)
Oh, and baking soda mouth swish is great for helping with a throbbing, nasty white tongue.
Treatment 6. It's been said quite a bit lately, "At least it's only temporary!" Temporary cruds, temporary baldness, temporary eyelash loss, temporary swollen tongue, temporary burning hands. I find little comfort in such words, as true as they may be. Though I should qualify that there are thousands and millions of other people far worse off than I - suffering, starving, scared, lonely, grieving, hopeless, helpless. I've reminded myself many times the past few days that I must keep the end result (whatever God sees that to be) ahead of me rather than focusing on the immediate struggle. The 'whys' don't matter - I cannot begin to comprehend the 'whys' of things that happen in our world; it's 'to what end' that I need to remember. I'm writing it mostly to keep reminding myself more than to actually give new information.
I've spent more time on the couch and sleeping these past 5 days than I think I have since surgery. Is it the steroids that I'm taking to help with side-effects or is it the treatment itself? Would I be better off just dealing with the side-effects and skip the steroids? I cried at the Family Fare Pharmacy. That can't be normal. My tongue/mouth is no better off than last time, though I will say my eyelids didn't swell and I'm not sure if my hands are a little better this time, so maybe the steroids are good.
Emotionally I tell Josh not to look at me b/c I'll cry. The lady at Family Fare was telling me her breast cancer story and giving advice (which is why I cried), but it's still not a place you want to be when you fall apart. This afternoon I was crying because I always figured I'd be like my mother - always basically healthy. Then there's the struggle of 'wants': I so want to be that nurturing, warm, connected mother and wife, but at the same time I intensely want to hole away and become a hermit. ... I was telling Josh this morning that I cannot distinguish between sounds in the house: the lunch bags rustling in the kitchen are equally loud and 'important' to my brain as my dear Levi trying to tell me something 1 foot from my face. The dog walking across the floor commands as much of my mental attention as a question from Josh. I tried to make an appointment over the phone today and had to ask two or three times for the scheduler to repeat why she was calling and what she needed to schedule. Steroids or general treatment issues? We shall see.
On a funnier side, my appetite is quite interesting. Since I've got the tongue issues, keep in mind that everything I eat tastes pretty much like wax. And I do mean everything. Tonight I roasted some garlic and toasted bread with gouda cheese for a little flavor. Then I proceeded to eat the roasted garlic plain - right off my knife. Can't say I've done that before! Earlier it was a craving (at 1 a.m.) for a Whopper Jr, light mayo with all the fixings. And I've eaten so many fried egg & toasts (with more salt than usual) that I've run out of eggs - OK, so that makes a dozen, right? Ha! Anyway, it may not seem so weird, but given it all tastes like wax... I keep hoping something'll hit the spot!
I, Amanda VanTil, the non-planner, non-goal setting, non-party-throwing person wants to party with lots of food and laughter when this is all over. And then run on a warm beach. Anyone wanna join me? :)
Oh, and baking soda mouth swish is great for helping with a throbbing, nasty white tongue.
Subscribe to:
Posts (Atom)