Wednesday, August 29, 2012

Milestones

I'm doing something I have not been allowed to do for over five weeks - SWEAT!!  Being unable to get rid of the lingering dizziness and headaches at times for whatever reason, I decided to go on a little walk today on the treadmill and perhaps "work-out" the leftover brain stuff from surgery.

This may impress anyone over 90 years of age, but up until now, my daily walk of one quarter mile on the treadmill was taking me an average of eleven minutes and forty-eight seconds.  You read that correctly:  1/4 mile = 11:48 time.

I had whittled that down to seven minutes and thirty seven seconds last week.  7:37.  1/4 mile.

That is one of the most pathetic statements I have made in a long time.

But in my defense, I am a bit wobbly and I was instructed sternly not to sweat.  Because, rather importantly, sweating triggers your lymph glands, and my lymph glands are now GONE in some places.

Let's not remind your body of that and cause it to make trouble.

But today, I determined, it was time to give it a try.  I improved to doing a mile in fourteen minutes.  Or sixteen minutes - I'm not sure as I had to stop when the door bell rang and the post office delivered my late, late, late Amazon.com birthday gift for a party that was on Sunday.

So, I lost track of the exact time.  But feel free to laugh loudly at this one all you who run - today's numbers were:  1 mile = approx. 15 minutes.  I have some work to do it appears.

If I were walking the local high school track, I would have been lapped four times over by 82 year old women.

I told my surgeon last week I was "doing lazy" pretty well.  So well, that if I hear one more commercial that shows a little 'insurance-general', or see 'insurance-lady-Flo', or the 'insurance lizard' -- or one - more - political - commercial, my head may very well explode even if my arm heals up nicely.

Apparently I've made it to the "after-surgery-stage" of *boredom* but *not doing anything yet*......

I went to the dentist last week and found tears on my face on the way home.  Being in a medical office was reminder of what I was missing - everyone has a job - everyone except me it seems.  I never thought it would bother me.  But much of self-worth seems to be tied up in work.

I keep seeing things I want to do, things that need to get finished, but have little "umph" in me to get them started and done.  Maybe if I felt healing up was going to get me back into life, I would be more engaging.  But there is a bit of depression lying over all things with the looming chemo sign flashing up ahead again.

I know it's the thing to do.  I know I have to do it.  I know I can get through it and get done and it will be a benefit.  I know if I don't do it now, I might be doing it again in two years.

But, I also just fit back into my clothes after my "steroid-body-swelling" went down.  I just got to a point of being able to eat more foods.  I just got back my eyebrows and eyelashes and my hair has grown to a more acceptable length.

I'm feeling stronger and better each day.  I don't want to go back to being weak in limb and mind again.

Not again.  Not this soon.

***

Having said that, I'm happy to be alive this week.  I'm happy that the cancer camping out inside of me is gone for all notable facts.  I'm happy to be here.

We went to a birthday party on Sunday that was such a pleasure.  It was a hot summer day spent beside the Bicentennial Park Fountains in downtown Columbus.  I felt the hot sun on me for a short time, sat on the cement ribbon surrounding the fountains and felt the spray cool me off.  I watched five of the dearest little girls I know all jump into the water with differing attitude, differing methods, differing effects, but I watched them all try it, do it and immensely enjoy it.

I sat on a blanket in the shade and realized with horror that my husband, the teacher, wore his 'pirate' t-shirt from an Outer Banks vacation a couple of years ago that had splayed across the back in huge letters for all to see, "The Beatings Will Stop When Moral Improves".  It's funny, because that is so not him.  He wouldn't beat a kid or anything else if it started to put him into a plastic shredder.  He might hurt someone hurting one of his loved ones, but he is about the safest guy to be around that I know.  But there he was, standing beside of a fountain park, with lots and lots and lots of small children with a t-shirt sporting a message that is funny to us and his family, but not so much to anyone that doesn't know us.  It probably was not the best place to sport that sentiment.

But we all laughed.  

I watched that t-shirt get wet and dip into life and fun with his granddaughters all hanging on him at one time or another.

And wee Millie-bean is all of a sudden an *old* four year old.  I will miss three year old Millie greatly.

She cut another chunk of her hair out last week and I leaned over and told her that she could just run out of hair one day.  She just smiled and laughed.  She's her own person and if she thinks she needs some hair cut, she's fine with the outcome of it all.  And I have to say it's pretty adorable.

I also told her I didn't care what her hair looked like, especially when she was one of the first ones to still hug and kiss me when I didn't have any hair.  Pre-schoolers may not always react that way, but she did.  She knew exactly what her Grandmum needed, as did her sister and cousins.

I love it that they all have parents that have implanted such tender loving hands and words in their daughters.

To me, Millie-bean will always be a perfect picture of one that overcomes hardship with an outcome of joy.  When she was nine months old, her mama found out she had a tumor in her brain.  She found out her life could be changed forever and would be in some ways.  She found out  her recovery would be long.  And Millie's young mama grieved it all and held her extra close because she knew she would not be allowed to pick her up for long months after her surgery in a few short weeks.

Millie's life, after that moment that stopped time for a while, was so different.  She needed to be more quiet than other children.  She couldn't be picked up by her mama for months on end.

She overcame it all.  She learned how to climb up into her mama's lap.  She learned, much to my amazement and horror, to climb in and out of her crib.  She was such a tiny little thing - I was convinced she and God had made a deal for her to stay small for a long time so her mama could eventually lift her with greater ease.

We called her "little mighty-mite".

I tried to run down the long stretch of 71 and help as much as possible.  I would walk in the door, and little Millie-bean would stand in front of me with her bunny and blanket and wait for me to pick her up and then she would just lay her head down on my shoulder and snuggle in.  I would vacuum with her attached to my shoulder.  I would dust and do laundry, all with the little bean firmly attached to my body.

I always had a sense of her grieving somehow when she was doing this.  It was as if she knew she had been dealt a hard hand in life, and she was grieving it.

Her sweet mama, and hard working daddy, even when a little overwhelmed with life's curve balls, still provided her a deep cushion to fall on, to rest in, to feel a firm foundation even when it was shaking a little bit.  They even at times allowed her to rage a little, then sob, then cuddle and feel loved.  There were limitations, but they taught her how to work around them.  She had a little bit more freedom and learned how to do things for herself, but so loved and appreciated things more when they were done for her.

Then, little bean turned three, and the sun came out.  She was passionate and could throw a temper tantrum with the best of them, but when her sun came out, she was the funniest, most intensely educational three year old I have ever met.  Each time I saw her I would sit with her and ask her what her "baby" was doing this week, and she would give me long explanations of how she as her mommy had taken care of her and all the work she had to do, and how many diapers she had changed.

When Millie-bean was three, her most delightful gift to receive was a box of Preemie-Pampers.  She would expertly change a diaper on her doll, completely wrapping it up like mothers do, then "dispose" of it.  Her parents would unwrap each of those "used" diapers after she fell asleep at night and the next morning she had a whole stack of refolded diapers to use again.

If you ask Millie what she wants to do when she grows up, she says excitedly "A MOMMY!!"  She has expertly worked out any kinks in her life.  Not only worked out the kinks, but made it better and more fun than anyone could have imagined.  

Her bright smile, her mischievousness smile when talking about *poop*, her high-eyebrow pointer-finger-extended explanations on "how to take care of baby"; the way she stands beside of anyone with a baby and watches intently - and you are never sure if she is watching to learn, or watching to see if they are doing things correctly -- all that and more is Millie-bean at three.

Recently, I showed her my drains after surgery and where they connected into my body on the side of my ribs.  She explored them intently and asked me seriously how I "took care of them".  At her party the other day, her cousin Zoe asked to see my now drainless "holes".  They have all been intensely curious about the whole drain idea.

Millie looked at the three holes very closely then sighed, looked up at me with a bright excited smile  and said "they look really good, Grandmum - good job!"

I don't know too many other little kids that could do that - look at three literal holes in someone's skin, examine them, then give a proper comment.

She's been our "little Miss Sunshine", and makes the sun come out whenever she is around.  She and her good mommy and daddy and sister have all coped and learned a lot about love and doing things even when you don't feel like it, and have burst out with some sunshine that rolls over others, bringing them warmth and smiles as well.    

That only happens to those intent on "overcoming".

And now, Millie-bean opens up "four".

I'm sorry to see "three" go - but excited to watch her unwrap "four".  And so glad I'm here to watch.

***

I watched some fascinating programs last night on the Science channel.  I have been pondering why I have little desire to create things anymore.  I used to sew quite a bit when my children were young, and I could create dresses, shirts, skirts, blouses - a lot of things out of the purchase of one pattern.

I used to plan and put together blankets full of squares put together in patterns.  I have put together rooms with little money.  I planned a garden and after getting Scott on board, implemented it and it was beautiful.

Now I barely have desire to cultivate it, plus, my doctor would rather I don't for a while yet.  A long while.  I could sew and create, but have two year's worth of material stacked up ready to go, and yet cannot get past the starting gate.

I want to learn a new language, yet walk away overwhelmed after the first three words.

I have been growing increasingly concerned that maybe I was dealing with some real brain damage and fall out from several years of thyroid issues, and then chemo.

An expert in the field of brains explained some of it last night.  He had learned and believed that we all have "creation" or "creative juices" or "great creative impulses" in each of us when we are born. He had learned also that we have "great inhibitors" in us as well.

He said the 'creative' rises up - pushes up - and wants to create and explore and learn and all the while our 'inhibitors' push down and suppress that to "acceptable levels".  So putting a baby or toddler in a seat in front of a tv, pushes down their natural desire to create.  Allowing kids to explore and use stacks of paper to create and make huge messes, allows them to learn to trust their creative genius inside them.

This triggered a memory from long ago.  I came across my four year old son *dismembering* one of my favorite garden baskets.  I realized in an instant it was too late for the basket, so I asked our little Mr. Creativity was he was doing.  He replied "you'll see".  I later found him up on a chair attaching it to our back porch wall and he smiled really big and told me he had made his daddy a "basketball basket hoop" - because he knew he liked basketball so much.  He then showed me how his dad could put the ball through the 'basket' anytime he wanted to now.

That ripped up, cut away basket stayed up there on that wall for a long time.  That little kid grew into a man that can make anything out of any piece of wood you put in front of him.

Back to the Science channel, the expert also noted that injuries to your brain could alter the 'creative / inhibitor' balance within as well.  He took us to a man who had a recent brain injury and suddenly all the man could do was paint.  He painted walls and walls and walls with brilliantly colored, good art.

He had not painted before.  The expert did not think his "creative" had been upped, as much as maybe his "inhibitors" had been taken away with his injury.

I am pondering this greatly.  There is little doubt in my mind and the ones around me, that my brain was a bit altered with chemo.  Maybe, my "inhibitors" for whatever reason, have suddenly pushed down more than before.  I don't know, but I know my greatest joys used to be in my ability to create.  And now, I can't even start.

While I walk on my treadmill, I have placed some pieces of paper that have great meaning to me.  This past week, I put a crudely cut heart shape, brightly colored, on there - crudely cut but pretty darn good for a three year old.  She kissed it and gave it to me "to take home and make me feel better".

Little Bean's creativity seems to be firing up just fine.  So I taped it there to study it and ponder over it all and pray that my "inhibitors" lift up some.

Four of the five little girls in our lives that are old enough and able to hold a crayon, have made me some pretty incredible "get well - feel better" art pieces.   They are spread out over my house, and when they visit and look at them and remember they gave those to me, I tell them every time I look at their art, I feel immensely better.

They smile as if they knew that would be the result when they made those.

Maybe, I now need to add another dimension as well and look at those pieces of art in a different light.  Those creations were given with great detailed explanations on why they were so special.  If I do indeed need to lift my "inhibitors" some and allow my "creative" more leeway, I have a pretty fine example in front of me on how to do that.









Tuesday, August 21, 2012

No mixed drugs for the lady, please.....

I have felt  continuously worse the last two weeks - worse than I did the first two weeks after surgery.

Each day I felt myself stepping farther into a cave of head-swimming-don't-stand-up-fast malaise.  I'm fine, but I'm not fine.  My head was *swimming*.  The only thing that felt safe and "better" was flat out time on the couch.

I expected when I stepped down off of the Percaset to have some withdrawal even though I had only used it continuously for a week and a half.  After watching Scott go through a lot of surgeries, the word "Percaset" in our house was no longer a noun, but a verb.  I watched him after each surgery have the euphoria that comes along with *Percasetting*, as well as the snap-easy-anger that hitches a ride on that bus, too.

I knew from long experience that you don't escape step-down - although patients will tell you they do.  They will tell you "it's not a big deal", even when you can see honest evidence before your eyes that they are in withdrawal and possibly one step away from a drug-rehab facility.....

I knew all of that and expected a few days of withdrawal.  But, it didn't feel better after a couple of days and daily my head became fuzzier and more of a headache and was sending such commands as "don't turn your head too fast or you might really faint".  It took four seconds for my brain to catch up with my eye muscle movement, and when it caught up, it wasn't all that happy about having to swim through whatever syrup was accumulating about it.

It seems the difficult thing after surgery - which I was fully aware of - is not sometimes the surgery itself but the fallout from the, um, *controlled substances* one is given to use to cope with the pain and to get you back on your feet quickly.

(And if anyone reading this is getting any bright ideas - I'm straight up informing you that I saved my last Percaset for the big "drain-pull" day.  It's gone.)

So Sunday afternoon, I made my fuzzy, swirling brain sit down in front of the computer and look up drug issues - none of this was making sense.  I tracked the start of this to two weeks ago and remembered that the pharmacist had changed out my antibiotic from Keflex to the cheaper and more available Cephalexin.  It didn't make sense that an antibiotic I had taken before would be causing an allergic reaction now, but maybe.

Then I realized my mistake and a possible loophole in my surgery-follow-care -- the doctors and nurses and pharmacists all are very careful to go over your current drug list with you.  After seeing my surgeon and oncologist the same day two weeks ago, my surgeon said to go ahead and start using Aleve for inflammation and also, to keep using the muscle relaxer.  My oncologist, gave me the go-ahead to start back on Ambien after being off of the Percaset for a few days.

Each night I lined up an Aleve, Ambien, Cephalexin and muscle relaxer and took them all within a half hour of each other.

I KNOW BETTER.

Plus, due to lingering chemo-gastro-issues, I was not eating for three hours before going to bed - so I was effectively taking them all on an empty stomach.

MORON.

My mistake I thought:  the pharmacist didn't know I was going to start taking my Ambien again as he refilled the muscle relaxer.  My surgeon didn't know that my oncologist had ok'ed my Ambien - the Ambien that had been "upped" during chemo......

I was not thinking well enough with everything being dumped into me and pain and all to figure it out.  And while I am on the subject - this is reason number one why I do not want to give up a personal relationship with a local pharmacist, no matter how  much the insurance company pushes the 'mail-order-meds'.  I need a familiar voice on the other end of that phone these last eight months to guide me through these deep-drug-waters.  I need someone to help me sort out what "over-the-counter" meds I can take with my scripts.  I need someone that has my drug-allergies bring up a big warning every time he checks my list.  I need someone to give me five thyroid pills when I am leaving town because somehow I have messed up somewhere and am in danger of not having my body work if I cannot get a few days of those to hold me over until I get back into town and can pick up the doctor's call-in script.

This past year, I have talked to my favorite Buehler's pharmacist more than my family doctor.

I know a little more about drugs than some people, but even then - I'm not thinking especially straight right now - he is.  

But after talking with the pharmacist today, and my oncologist office, they are thinking I should have been shaking off the brain "fuzziness" a little faster and that the interactions of those two drugs should not be that long-lasting.  I stopped the muscle relaxer on Friday and took my last Ambien Saturday night.

She wants me to do a brain MRI "just to be sure".

I don't like the idea behind it, but on the other hand, this will help us know better going into the new chemo what we are dealing with - which I'm guessing is just basically Karen working with half a brain after certain drug cocktails.  I think they may have forgotten just how really *sensitive* I am to most drugs.....(sigh, hand on forehead).

PLUS, and this is totally selfish, but I kind of see an MRI coming down the pike at some point in my future anyways, and I would rather have that on the "study" tab, than my next chemo round that will not be under the sweet umbrella of "new-drug-study" care.

***

My best friend started back to school yesterday.  He didn't take on any jobs this summer except the title "nurse".  Wiping up blood and dumping drains twice daily does not show up on his "top 20 jobs" test results on any personnel testing.

Probably not even the "top 200"....

The closest anything-medical he has done, was filling up five gallon buckets with ice water and pushing a runner's shin splint leg into it on the bus ride home from cross country meets.  Sometimes, if a trainer was not handy, he would wrap a few ankles and such - but that was more than enough *medical* for him.

But this summer he daily swabbed my three drainage holes with iodine swabs, reading the manual a few times to make sure he had perfected the technique - touching the open-skin part first, then making concentric circles farther and farther out from the wounds.  Put a beret on him and he would look like an *artiste* using a brush while doing them.

I have to say, I had some pretty spectacular iodine circles on the side of my rib cage for three weeks, twice a day.

And not one drop of infection.

In fact, he has become quite a student of doing "sterile" and is now rather fond of the ease of using latex gloves.  He uses them when he is weeding outside because we have poison ivy in a few spots.  He uses them to dig in the garden so he won't have to scrub his hands so much.  He uses them when he is preparing my fresh beets for roasting so his fingers won't be red for three days.

They just kind of pop up *everywhere*.

He's come along quite nicely this summer - he went from almost having his head hit the desk when they were explaining to him the post-surgery-needed blood dumping with the drains, to doing such an exact measuring and recording with the fluids that the nurses gave him a GOLD STAR when looking over his weekly records.

And I miss him horribly these past two days.  He has been my rock, my steadier, my helper, my nurse, my chef, my "get-happy-guy", my everything for a long summer.

Adding insult to injury, his morning coffee tastes so much better than mine.

***

I told someone a couple of weeks ago, that this whole year has been a year of regrets and repentance for me.

R&R has taken on a whole new meaning.

In my study the last couple of years of some Jewish Rabbis and such, I came across the three holidays that are commanded by God to be celebrated by his people.  And after kind of wondering about them, reading about them, then looking them up several times in the Bible, I never found anywhere saying that we should not still be celebrating those.

You can argue that back and forth, and I don't even care about that part of the conversation, but what highly interests me both last year and this year again, is Yom Kippur - the highest Holy Day of the year according to the Jews anyways - but the whole concept of that holiday / holy day is the idea of repentance.  The idea of atonement.  The idea of underlying joy in the midst of all of that.  And then the celebration afterwards that is basically saying "God heard us - we are forgiven another year!!"

And those Jews know how to do a celebration it seems.  It's supposed to include a lot of dancing and wine anyways.

We can argue that Jesus gave the final atonement and that we don't have to do that anymore.  I get that.  But I had never, ever in my life spent a whole day thinking on my sin in my life - and for me it wasn't just for the past year, but my whole life - thinking on it, then seeing it's hold over me, seeing the ugliness of it all and how I had called it a lot of different things - called it anything but *sin*, then wanting to purge myself of it.

I chewed it over for a long time - not just the one day.  I wanted to face it, get rid of it, then start anew.  I wanted to change my ways.  I wanted to amend and atone.

It's so easy to get to middle age and have a whole lifetime of subtle lies and "protections" and walls and hurts and "personality nuances" stack up and become "ok".

We in America, or at least me, can find a lot of different ways of dealing with this, none of which include looking at our own deeply inset, deeply protected depravity.  I know people that have learned to manipulate, and it was wrong twenty years ago, but today "it's just how I do things".  I know people that have insulated themselves behind a wall of "fundamentalist-Christianity" and come to the point of refusing to live in this world, reflect God in this world, because they are too righteous.  I know people that can point out everything another Christian does wrong, or believes wrongly, but are unwilling to take a look at their own innards, to weed out what they themselves might be lacking.

I remember a pastor in a church I was attending many years ago noting that many times Christians are the least able to see their own sin.  He stated as a case in point that most times when standing in a line at the grocery store and upon hearing someone being rude or argumentative or demanding at the checkout line, that he would be afraid to look up as it was most likely someone from his own church, and they would then turn and wave hello to him.

I relate to that, I myself had learned how to be a "bully" in business to get what I needed to get done quickly and correctly.

So I thought about it all, then thought about me.  My sin.  My protected parts that had not been based on anything other than it was the best way to survive at that time.  And how we can hide behind "that's not my gift" or "that's not part of my personality" or "it's easier to judge others than purge ourselves".  Or, "I had to do that to keep my job".

Then a couple of months later I found that I had cancer, and I found out what a real *purge* of evil in your body is all about.

You should get sick over it - you should hate it that much.  You should recognize how fast it can grow and take over your soul.  The *purge* of that evil within should be as bad, if not worse than the discovery itself.

I didn't even know that cancer was in there.  I didn't have any idea how long it had been there.  Someone else had to find it for me, and point it out to me.

In hind sight, I had got very used to the symptoms, and when discussing them had them minimized, so I had convinced myself I was "fine".

We in America seem very able to turn a blind-eye to our sin.  We are very able to make our sin not hurt so bad.  Or look so bad.

And no one can ignore symptoms better than me obviously.

But trust me, God has had me in a classroom tutoring me very closely on my past sin - both pre-meditated and unintentional.  I haven't had any escape.  I haven't had a chance to "get back to work" to push it all away.  I haven't had a chance to be distracted by books or movies or even basic life because I couldn't do any of those.

I was in the front row, maybe the only student tied to the desk.

It's all very personal, and not something I think can be published.  It wasn't secret sin that jumps to mind immediately - I'm not an alcoholic or druggie.  (well not including the last three weeks plus.....)  I don't spend time fooling around with other men, nor do I want to.

But I have some deep-set issues that finally at age 50 could not be put in the back seat any longer.

And it sadly seems that maybe alcoholism or drug addiction or other "diversions" might have been easier to take on - or less evil than sinister "simple" ignoring humanity sins.......

Issues like, have I loved the ones around me like I was supposed to?  Like I have been commanded to?  Have I *reflected-God* when faced with amazingly maddening voices on the other end of the telephone *help-line* that was anything but helpful?  Have I just walked away from relationships that disappoint me beyond what I considered "repair"?

I still believe that in issues dealing with immorality - especially immorality against children - those issues need to be righteously stood up against.  God has confirmed that within me.  I explored that and someone needs to be the STOP sign anytime that issue is brought up.  We in America want to do that with people we don't know, but when it is a relative or friend, there are few who choose to enter into the pain of standing against it all.

Especially within the church, because we cannot surgically separate that from the idea of "forgiveness".  We kind of skip over the parts about dealing with the horrible crime of child sexual abuse, aka "immorality", because we kind of think that God wants us all about forgiveness.  He wants us to do both, but we don't 'get' how to do that.  Most people think if they have to err, to err on the side of forgiveness, because that's easier and less messy than the thing that actually takes care of the real sin.

That is why the sin of immorality against children in America is not stomped out yet.

I could write a book on this, but God reinforced the "good stand there", yet, ugh, there have been other times, when I chose wrongly.

One that I can talk about openly without hurting others happened just last week - the day that I realized this was the completion of "week 3" after a major surgery.  I know I had not recovered from six months of chemo before jumping into surgery.  I knew I was a little bit slower healing because of that.

But I sobbed and sobbed and Scott just listened.  He had taken care of himself after a lot of surgeries for big chunks of the day because I was running back and forth from work trying to care for him, trying to keep a job, trying to do it all.  I thought I had done pretty well.

Day number 21 when my muscle wall was still aching, and my arm and rib cage were still searing with pain when moved errantly, told me differently.

I remember when our daughter Heidi had her tumor removed from her brain and she had an eleven month old baby and a two year old toddler in her home.  I took three weeks off from my job to stay at their home with her and care for the children and laundry and all the work that goes with two active children, but I remember in my minds eye, the look on her face as I pulled out of the driveway to go home to get back to my "part-time-job" that I thought I needed.

She needed someone to be there for maybe six months.  And here I was leaving her to deal with it all after three weeks.

Because I didn't have enough faith that we could make it financially if I quit my job.  Because I didn't have enough faith that God would take care of it all if I did what I knew in my heart I should have done.  I could line up some good reasons but I knew that God was telling me differently.

And He has spent a good part of a year showing me that I didn't need that job afterall.  I could do what the Bible commanded in the area of care for others when needed, and He would take care of the rest.

So my soul has been in mourning for a long time because I am *feeling* the pain I knew hurt in others, but didn't realize how much.  And that's not just surgical pain.

I've had no escape.  Nothing to do but look at it all and confess it all and after all of that, I am now honestly looking forward to Yom Kippur this year.  I want to get rid of all those regrets, learn from them, learn from the very hand of God, then take on my atonement and celebrate.

God has spent almost a year washing me, nay - *scrubbing* me - from the very depths of the deepest part of my innards, spirit and soul.

The Jewish people say it this way:  "Yom Kippur is the holiest day of the year, the day on which we are closest to G-d and to the quintessence of our own souls.  It is the Day of Atonement.  "For on this day He will forgive you, to purify you, that you be cleansed from all your sins before G-d" (Leviticus 16:30)"

Whether He gave me this opportunity to live thirty more years, or whether this is preparation for facing Him soon, I don't know.  But I know that the "washing" - the scrubbing of years of accumulated dirt and filth and cover ups and trying to make it all smell good has felt so cleansing.

Knowing what I know about the Messiah doing the atonement for our sins is even more meaningful to me now.  Delving deeper into personal sin and the years of band-aids and half-notices when called up on it makes me grateful for a Messiah that cleanses me daily if I take the time and honesty to do it; but to also know that we have a God that cares enough to listen to us deeply look at this issue one day a year to show Him that we are serious about wanting His cleansing, is well, quite frankly - healing.

And then He says "get happy about it".

I can't wait for Yom Kippur this year.  I have felt these last few months that my soul was pointed straight towards that.

What a holiday.  What a Holy Day.











Wednesday, August 15, 2012

Climbing

I'm not typing much lately.  Rather I am one-finger-pecking out messages on my phone in between hitting it on the pillow to get it to work correctly; or I am a bit hunched close to the key board in an effort to keep my arm *still* as my surgeon wishes, but more importantly, to NOT anger the "dangling-severed-nerve-endings" in that arm at all costs.

It's almost like a new job - I'm learning quickly as I go.  Putting on a T-shirt?  NO! angry nerves shout 'do not lift your arm in that manner'!!  Tying my shoes?  NO!  do not stretch your arm out, down and forward at the same time!!   Sitting in the car for long periods of time when you forgot your arm pillow?  Quick rapid fire shocks make you look for anything, anything to pile under your elbow.

And trust me, all the new commands have exclamation points after them........

It feels like a hammered, long knife that was left in the fire until it was red-hot has been thrust into  my flesh.  My brain is a little slow to start understanding that these nerves were cut, and therefore are not giving reliable information.  My brain is not grasping the fact that some flesh is not there any longer, some muscle was cut and is healing, and some nerve endings just need to calm down a little bit.

My brain and nerves are so not getting it, that if I anger the nerves more than once or twice, they send the surrounding muscles into spasms.  And shake unembarrassedly the arm, the hand, the fingers.  

Don't hug me, don't touch that arm, don't bump into me.  And if you see me accidentally bump into a wall - please cover your ears so you don't hear me sin.

Interestingly, Scott had a similar surgery right after he was born - he was born with a tumor under his arm.  The surgeon at that time took a "generous" amount of tissue and muscle in that area, and he has had some of the same sensations all of his life.  That's why he shoots a basketball the way he does - he's protecting that armpit area that has damaged and severed nerve endings still firing incorrectly in it.

He has always been somewhat protective of that area, but watching him play sports, you would never guess.

So we are quite a pair.  But I have the most understanding ear.  

It seems like I have good days and bad days, and slowly the good days are becoming more numerous.  Monday, we went to Columbus to have my last drain pulled, then stopped at Heidi's to watch Addy show off her new biking skills, and I cannot remember right now what else we did.  But we got home around 4pm and I was wiped out for the next 30 hours.

I spent a lot of time on the couch watching NAT GEO's Nazi Hunters.  I kept falling asleep and so I have no idea how nasty old Eichman ended up, or Stangl, etc.

I had to ask Scott.  Sigh.

But watching Addy-girl ride that bike was something awesome.  Wes sent us a short video of her "first flight" and all you could see was a little blonde head pedaling around a green soccer field at a park near their home.

With a big wistful frown, she had just told me the week before that "she didn't know if she could ever take off her training wheels" - and then she did.

So I'm thinking if Addy-girl can take off her training wheels and learn to ride a bike in a park area with other folks around watching - if she is that brave and "hard-trying" and ends up riding around a green soccer field, then I can put my feet on the ground in the parking lot in a few weeks and walk into a building and go up to the fourth floor and start chemo again.

I'm not sure if my smile will be as big as hers, but I keep watching that little video and think I can.

***

My "anonymous-gifter-and-fabulous-words-sender" sent something a couple of weeks ago - it's a picture of a mountain climber on top of a very high mountain and they wrote "When you get to the top of the mountain, keep climbing!"  I liked it then, but it is now taped to the treadmill after I heard the dreaded "chemo starts again" sentence.  I hit the top of the mountain, and I realize I need to keep climbing.

It's not going to be easy, but I'm told the view when I get there is pretty astounding.











Thursday, August 9, 2012

Courage Karen, Courage....

I've taught quite a few Sunday School classes over my years in churches, and some incidents stand out and are just simply hilarious.  On the other hand, some memories are sad or very poignant.  There were times when you could watch kids start to process what you were saying and maybe even internalize the idea then apply it to what was happening in their lives at that moment.

One that has stuck with me a long time, just because it made me laugh, but it also was exactly how I felt sometimes, was from a little boy that maybe graduated from high school this year - so it's been a while.

The group I was teaching that quarter was a split of five to seven year olds, and we were studying the life of David.  When we got to the part where David is hiding out from Saul in the middle of desolation with his six hundred Mighty Men, and they leave to go fight with the Philistines and are rejected, so turn home.  Upon returning to their town of Ziklag that had been given to them to camp in they find to their great horror all of the town burned, all of their belongings and worse - their women and children are gone!  The men immediately turned on David blaming him, and David in turn cried out to God.

I asked the class if anyone had ever had a bad day where they just felt like the whole world was against them.  One of the five year olds raised his hand - which was brave when sitting amongst so much older seven year olds - that sneered at anything a five year old could think of - but he raised his hand and said "sometimes when my teacher and everyone else in my class is mad at me, I just like to put my head down on my desk."

Perfect.  He perfectly understood, related and responded.

There have been times in my life, when I, like little Heath "just want to put my head down on my desk".

Today, I had a blood draw and two appointments at the Stephanie Spielman Center.  My blood work has finally all come up into the "low-normal" range - which is good - and a long train coming as Bob Dylan said once.  Or twice.

My surgeon is still immensely pleased with my incision healing, my tubes output and said I had been the perfect patient.  In fact, I had been so good, he pulled another drain.  

It didn't hurt so much this time.  But I'm not bragging yet - there's still one left.

I have to keep my arm pretty much immobile for two more weeks and one more drain pull - and then I jump into physical therapy to undo what the surgery and four weeks of immobility created.

I'm all zen and cool with that.  I've seen a lot of surgery incisions and his is excellent, so I trust him.  I can do this.  What my friend Linda had told me - "that after chemo the surgery is just kind of a hiccup" in so many words - was true.  The first two weeks were not all that great, but I feel like a couple of days ago I just jumped from "recovery ward" into the "waiting to get out and live again ward".

Then, I met with Dr. Mrozik.  She is still very pleased with my pathology reports.  Myself and the other study subject that had her surgery the same week, have greatly boosted her study numbers.

I'm quite glad for that as well.  And feel very blessed to have been directed through a series of events, to what looks like a divine appointment with her.

I asked her what my treatment plan was now, since my tissue and lymph glands "had shown 100% response to chemo", as they like to say.  She pursed her lips, put her hands together, pointed her fingertips at her mouth and said "I was wanting to talk to you abut that".

My smile I'm sure faded a bit at that familiar gesture of hers.  It precedes all bad news.

She said, "I still want you to do the extra rounds of chemo".

I just wanted to put my head down on a desk somewhere.

It's two chemo drugs given in four chemo treatments once every three weeks............................................................................................................................................................................................................................................................................

That's three more months of chemo.

This had been placed on the table when I showed no difference - therefore maybe no further response - on the ultrasound and mammogram in May.  Follow up radiation treatments once a day for six weeks had been placed on the table a while before that.

I expected the required radiation treatments to not have changed, but had hardly dared hope,  had *hoped* somewhere deep inside, that with such a good pathology report I would not need the next round of chemo drugs.

I didn't cry.

She told me if I was 40, there would not be any option - I would get the extra chemo.  If I were 75, she would not recommend it.  She said "you are still very young" (I liked the *very* part) "and it would be good to do it."

She wanted me to do it.

Because of the type of cancer I have and the higher chance of recurrence.  Because it is so invasive and so aggressive.  Because I was off chemo for five weeks before surgery and my blood counts were the lowest making my immunity maybe below zero.  Because there might be that one cancer cell lurking around in there somewhere that took advantage of that low immunity.  Because of my lower back pain.  Because of my symptoms that showed up the last half of chemo.  

There are enough "what-ifs".  This extra chemo is "just to be sure".

I hedged.  My last memories of chemo are not all that great.  I really thought that if I would have had that last chemo treatment in June, I would have been down and out.  Done.

I felt so bad those last couple of months of chemo.  I have never felt so weak, and my body so vulnerable to succumbing to any disease my entire life.  Even including an encounter with Graves disease a few years earlier.

Chemo literally knocks out any feeling of new life within you each day.  It makes you feel like you rest and sleep but nothing has "regenerated" or "renewed" within you when you wake up.  Instead, you feel as if you are stepping down a steep slope of a dark desert canyon that you may never climb out of.  You feel like one tiny misstep, and you fall beyond the words of hope.

I hated the feelings of weakness.  I hated knowing what this was doing to my body long-term.  I still cannot even squeeze my fingers tight enough to push fluid out my own drains - Scott still has to do that for me.

I feel like I just got part of my brain back somewhat.  I can read again.  Think again - albeit still limited and not on top of things yet.

I so did not want to hear what she was saying.

She continued, "women who have a 100% response to chemo - as you have had - and then get the two extra chemos, move their chances to 95% of not having recurrence for five years".

She knew she had me now.

OSU is fond of their information hand outs.  The nurse brought in a spiral bound notebook explaining the two new chemos and their side effects.  The tag line with these drugs is EXTEME-NAUSEA.  And, like before, the drugs will do their blood work damage 7 - 14 days after treatment.

The nurse looked at me and said "just like before, you need to be germ free those days"..... my heart was sinking.  I am so weary of living "germ-free".

But, I thought to myself, I can do this.  I am at least still *living* to be weary.

I put a little flag on my sinking heart, trying to get it to stand up and be courageous.

Then Dr. Mrozik said the words that sunk the flag, my heart, the whole boat.  She said "because of the nausea and the higher risk of your body reacting at this point, you will need to take steroids at home for three-extra-days".............................................................................................

I was stunned.  She looked at me and said she knew how hard steroids were on me, but there was no option.  I told her Scott might move out if I had to do that many days of steroids.  She looked at Scott to see how accurate my statement was, and he smiled and said "I'll just move to the basement."

Thanks, honey.

There are no options on the steroids, no possible way to weasel out of taking them.  Period.

Dr. M said, "the good news is that you can take the 'growth recovery drug' this time".  It's an injection that has to be given in your fat 24 hours after your chemo treatment.  And we all smiled, because that was the drug I could not take to help my blood recover the first six months of chemo.

She said she would check out insurance, because one injection is $4,000.  Our smiles faded a little.

We found out later after a series of phone calls that if we are to take the drug home and "self-administer" - meaning myself or Scott would stick in the little needle 24 hours later, much like some diabetics do every day, making it completely 'doable' - but if we take the drug home to do that so I can vomit in my own bathroom and recover in my own bed, our insurance only pays $1,000 of that $4,000 charge.....  Of course, if we stay over night in a hotel room full of germs and then go in and charge our insurance for another appointment the next day, they pay more.

Ugh.  I wanted to lay my head down again on that desk somewhere......  I think I found the hole in the discussion of health care reform that I would like to have put on the table.........

But, what a blessing children can be.  We have two beds in Columbus made up for us anytime we need them - with complete Lysol spray treatments.  They * even * said * I can use that bed when juicing on steroids.  Kristi grew up watching the Incredible Hulk in total horror once a week, and she said if it comes down to it, "we can just do what we need to do to curb the 'steroid-beast' - lock it in the basement"......

A total mom moment - I tried to raise them to be practical.

So today, I am spending my time grieving this all some, because the second part of that Sunday School lesson so long ago, was to cry out to God when you are in those moments of putting your head down on your desk.

Then I am making up a list of all the good things I want to eat before chemo once again steals my senses of taste and smell, all the people I want to see before germs become an issue again, all the places I want to go.

And do it all in the next three weeks.

We stopped at the Cheesecake Factory for a late lunch yesterday - something we have not been able to do with all of our trips to Columbus before due to chemo and it's resulting issues.

It was so good.  I have lost ten pounds the last three months and need to gain a little weight to get my blood up a little bit more.  I'm not skinny, but it's not good to head into chemo with your blood work still a little on the low side.  They keep telling you to "EAT", so I'm bulking up.

Talking with friends on the phone, the texts, the emails have all been awesome - thank you all.  We are heading out soon to buy Scott his requisite JC Penney's white shirts for school.  He won't tire me out too much - he knows what he wants, gets it and we then leave.

It was good yesterday to stop at Barnes and Noble and just hold and look at books that 200 other germy-hands have touched.  I could do that and hear the kid coughing in the next aisle, and not have to leave.

It was awesome.

Something came back these past couple of weeks - my sense of taste, my sense of smell, my eyebrows and eyelashes came back the week after surgery - and that was awesome to wear sunglasses yesterday and not worry about wiping off my eyebrows - but so much has come back that is glorious - like the smell of shampoo - that I am loathe to start that descending path of chemo again.  

Pray that I get "my fight on", and head into this with courage.

There has been a lot of bad news lately that helps to keep this all in perspective.  A cousin of mine was taken to the James Cancer Center this week.  My dear friend from work years ago is in University Hospital fighting a courageous battle.  She is getting IV steroids.

That's a tough woman.

So, I know that I will come to the place of realizing I can do this, I can do this, and I will walk in the front doors of the Stephanie Spielman Center and say a big "I'm back!" to all of my dear chemo-nurse-friends and get into my bed, do the chemo and do the steroids and get through it.

There's a lot of courageous folks all around me.  My cousin Joe, has done chemo for four years.  I am amazed.

So I line all these people up in my mind, and I walk in those doors and do what I need to do to fight this monster.  This evil.  This leaven that left unattended will flourish and take over again.

And pray that God again goes before me, after me, and most of all beside me to help me through it.











Monday, August 6, 2012

Long Weeks

It's been a long week.  It seems there has been enough pain to go around the world nineteen times in my part of the woods.

My arm hurts and the drain in that left arm is going to be in there another two weeks.  We are not particular friends, that nasty drain and I....  It feels like a ten inch Popsicle stick was shoved through my armpit down into my upper arm.  And after I asked my surgeon about it, that's pretty much basically the idea.

I had one drain pulled out last week, one comes out this Wednesday.  My least favorite one, will be in the longest.  At my last appointment, we chatted about the surgery and he commented on how very pleased he was with my pathology report; and then my very good surgeon, Dr. Povosky, told me to lay down on the exam table.  His very lovely nurse stepped close to me and gently took hold of my good hand and held it.

Kind of tight.

Movements such as that, can make one a little nervous.  He explained to me that he was going to pull out one of the drains and I just needed to keep breathing and not hold my breath.

As if chemo was not enough torture.

The nurse grabbed my right hand and arm with both hands firmly, and I laughed and asked her if anyone had tried to hit him before when removing these -- and just as the last word left my lips - he yanked.

I've had easier doctor's appointments.

He said rather loudly - "keep breathing! keep breathing!" and suddenly I see what looked like ten inches of plastic in his hand that just a moment ago had been inside my chest.  And that is not an exaggeration.  It might have been even longer - I am still a bit traumatized.   

I asked him how they got people to come back for the next drain removals.  He said "live with them for another week, and you'll be back."

True words.  I might be the first one knocking on his door Wednesday morning.

***

I've tried to step down off of my pain meds this past week as well.  It didn't go so well.  I called their office today and asked her how big of a wimp I would be if I needed a refill and she very kindly told me that since I also had the lymph gland removal in that arm with most of my armpit gone, that my pain will be in that arm and  consequently, it does take longer to step down.

Alrighty.  I can sleep again tonight.

Scott has had lots of surgeries, and we have kind of collected some "mantras" spoken by various surgeons that we repeat over and over.  Like "the second day after surgery is the worst" then followed by "the second week is the worst week", and that is followed by "the second month sucks" and so on.  They have been true for Scott, and I can now attest, true for me as well.

With my second week behind me now, I'm looking for some bright sunny days.

Dr. Povosky also explained his belief to me again that the less I use this arm these weeks, the better chances I have of cheating lymphodema - extreme swelling due to the loss of the lymph glands.  So I have been very, very good.  If it weren't for the arm and armpit pain, I would be feeling almost, downright, pretty normal again.

***

I have been feeling stupid when trying to step down off of my pain meds this past week.  It seems there has been a torrent of those in pain and experiencing loss this past week - making my pain seem minimal in comparison.

We've had a long standing Triple A membership for a lot of years.   The winter that Scott had his surgery was a nasty one.  You might remember the eighty-six inches of ice and snow if you were the one shoveling it.  I shoveled just two paths for the tires of the car, thinking, hoping that it would all melt soon.

It didn't.

Then the twenty inches of snow had freezing rain fall on it for a night and the driveway with the two pathetically shoveled ruts suddenly became harder than a cement wall.  I tried backing the car out of the driveway and all I did was slide into the yard on the other side.  I tried and tried.  Scott came out and I was upset that he was thinking about pushing a car in his condition.  Scotty came down and helped and it was just a simple no-go.  The car was too light to move on any ice - let alone ice that had deep ruts and poor shoveling.

I called Triple A, and Drew Bates showed up to wrench our poor pathetic light-weight car up to the street.  He stood out there and talked to Scott and I could hear them laughing a lot.  I do admit the way the car slanted into the yard didn't look like someone who had been driving for 40 years had been behind the wheel.

He saw me watching from the front door and said sympathetically "why that little light thing just didn't have a chance".  And spoken with his slow drawl made it all sound pretty funny.  He made us laugh and redeemed me all in the same sentence.

I apologized for calling him out on such a cold night and he just smiled and nodded his head and packed up and left.

Drew's mom, Karla, had talked to Scott a couple of months ago when he was getting groceries and she sent home words of encouragement - we share the same oncologist.  I held tight to those words of hers when I was in the midst of doubt.  

It's funny how the lives of people within a community weave in and out for years and years.  I think one particularly bad towing year Karla even called me to remind me to renew my Triple A membership - I was most grateful.  

When I have been sitting alongside a road with a flat tire, or a car that just gave up - needing roadside assistance - I always wanted Triple A to send Bate's Garage.

They were the toughest, kindest gentlemen in that business.  It's not easy being a woman sitting, waiting, needing assistance.  The Bate's tow truck was always a welcome sight.  They knew how to make one feel safe as well as cared for.

I've thought a lot about Drew and his folks, his brothers and his wife and kids this past week.  And prayed for them almost non-stop.

***

Someone asked me recently "why?"  Why did God allow me to get cancer after all we have been through previously?  Why me when I ate a pretty healthy diet?  Why me when I professed God pretty regularly?

And my answer is, I don't know.  I guess after this week, I would maybe ask "why not me?"  when I see others be in more pain than I hope to ever know.

I take hope in the fact that in the Bible, God comforted those that went through any pain and suffering.  He heard Hannah when she cried bitterly on the temple steps, and the Bible says God heard her.  She was childless and her husband's second wife was making fun of her.  And God heard her pain.

When David left Jonathan, they cried bitter tears realizing that David would have to live on the run until Jonathan's father Saul was dead.  God heard them.  He included that scene in the Bible.  It was bitter tears of betrayal and hurt and pain and the realization that life would never be the same.

Sometimes we think we have to "tough it out" because our pain is not as severe as the next person. But the Bible seems to indicate that God hears any of our pain when we cry out to Him - and it seems to indicate that He wants to hear it.

RVL talks about "us-Christians" thinking that when we "sign up with God" that we should have a "field full of daisies" experience.  He believes it might be quite the opposite.  There are people walking very Godly lives that are living with a lot of pain.

I told God earnestly over five years ago, that I wanted to do an "honest walk with Him".  I think that kind of means that when I look into the fiery furnace and don't know if I will walk out, that I still say "my God can save me - and even if He doesn't - I will not bow down before your gods".

The Bate's family has walked a similar path recently, and yet they have one more greater pain - maybe the greatest pain a parent can feel - the loss of a child.

All I know is that we are supposed to cry out in anguish and pain and sorrow and hurt, and God hears.  We don't know how He might answer.  We don't know how much the incident will scar us. We don't know if we can keep walking at times.  I am ashamed that I used "Christian-ise phraseology" on my last post - God did answer my prayer - but even if He had not answered with good pathology reports, He is still God.

And He still heard my prayer and my pain and my sorrow.

So I will answer, this time God saved me from the fiery furnace - and even walked about in it with me.  But even if I did not walk out of the furnace, He was still there, and He still heard me and my pain.

And tonight, in Ashland county, my pain is not the worst pain for a long country mile.