Thursday, June 28, 2012

HOT!!

HOT!! HOT!! HOT!!

We are greatly regretting not taking my brother Curt's advice when we were building our house long ago and put in central air.  There are fourteen days a year we regret it greatly, and the rest of the 351 days we get along just fine.

This is day one of fourteen, I'm thinking.

We are not "green" so much, as I think it is more due to the fact that I always worked with people who were hotter than me, consequently causing me to freeze all day, and it would take me two hours to warm up when walking outside into the hot, humid air late in the day.  And, air conditioning has always made me sick.  Like, summer-cold type sick all summer, so we just kind of decided we wouldn't need it.

We like the windows open, and fresh air.  We like to "feel" the seasons.  And trust me, we are certainly "feeling" summer today.    

Plus, we failed to take into account that we had always lived in houses with lots of trees surrounding them.  We finally got a few to grow and the one central maple is providing awesome shade now - but not enough to keep a house cool yet.  We measure it each summer by how much shade it provides - like, after five years, it was "a two person shade tree"; then a couple of years later, you could put the table under it and be shaded; now, I'm thinking the whole family could squeeze under it and be good.

But, today, I'm pretty sure we change over to the air window units.

***

It is amazing how much better I feel for some long stretches of time.  (Long stretches of time for me equals a couple of hours.)  Wednesday was not such a good wake-up day, then we spent the day in the car driving in the bright sunshine, and it just kind of all came undone.

After my appointment, we were so hungry that we ate at Steak-n-Shake -- not such a wise move on my part.  I should have stuck with my sterile plastic spoon and tub of peaches.  But, that steak-burger and french fries and chocolate milkshake were so good going down, then sadly, it suddenly occurred to me that my wailing stomach is still boss.  

It was the first time in a long time we were able to do fast-food for me.  Scott watched me with mixed anticipation.

I still should not eat dairy.  Or that much quantity in one sitting.  Or that much grease.

But, even though I am less than half the woman I used to be, I am feeling better.  I feel like I have topped the hills in Southern Ohio and am looking at the whole range of Appalachian mountains ahead, but I am topping hills at least now.

Still tired as all get out some hours of some days, but feeling better.

If only my stomach would agree.

***

Scott had four ton of stone delivered while we were gone yesterday, and decided that today - the hottest day of the year - he is wheel-barrowing it back to the garden paths.

He .  is . crazy.

But he has the garden in pretty amazing shape.

If I could figure out my issues with google blogger I would post some pictures.  Blogger and I are no longer friends.  I could not even correct the hi-liting issue on the last blog entry.  It might have something to do with the fact that at least three security services are trying to take over 'Dell' here.

Computers and I have issues when my brain is working well.  Now, I'm just trying to glare at it, and make it go away with wishful thinking.

Apparently, I also have issues with my cell phone, which I still consider 'new' to me as I got it the night before I started treatment in January.  We were driving by the Verizon building on I270 on our way to stay over at Kristi and Cal's and I am talking to a Verizon rep in Washington state.  A rep that I think was taking advantage of the laxer marijuana laws on the west coast.

I haven't had enough brain power to just sit down and call them back and really learn the phone.  What might be even better soon, is that I just march my half-brain into one of their stores and have them show me how to use it, and update it, and sync it, etc, etc, etc.

It has been handy for Scott and I to use for Solitaire games while waiting in medical facilities.  We trade off the small computer and the phone to keep us distracted.

Honestly, what in the world did patients do ten years ago while waiting whole days???

***

We read some disturbing things online last week while looking for something, something to take care of chemo-headaches while waiting on my doctor to call back.  There was a German study on Taxol that I could not peel my eyes off of.

It wasn't so positive.

Then, the Bible reading for last Sabbath was pretty much all on trust.  Trusting God in the midst of chaos and trusting that He will work.  Sometimes, some awful things happen in those same passages as well, and having Stoneburner blood coursing through my veins, I'm not one to think that throwing my brain over to "positive thinking" is everything Norman Vincent Peale leads one to believe.

So I'm mulling over if we as a nation believe that trusting God is just positive thinking?  I know it is God's grace that is holding us and keeping us now, but sometimes that lands a little askew when it is a phrase thrown out there as an 'encouragement' for those in the valley.

As I'm thinking this over on a little bit deeper level now, I want to know what is really the bottom line truth - do we just bop through life and throw out 'truisms' and not really understand what trusting God is all about?

I don't have any answers, but listening to 'Ray' again last night helped me develop what I have believed for a long time, and cannot put into words - sometimes God's will sucks.  Or better rephrased, sometimes we in North America expect that God is not about suffering.

He is.

If we were to plop ourselves in any church other than North America or another nation that has decent medical care, most of us would be mourning a child we had lost.  Or evil we had seen with our own eyes.  Or, making big choices about what we believe because it might cost us some pain and suffering or even life itself.

All I know, is that sometimes we make it too easy and easily accuse others of lack of faith, when really, faith might be more about walking through the "sucky" times when you can't put a positive spin on it - and still believing.

Some believe we have been through enough bad times already.

I don't even compare to what some suffer in China.  What some have suffered in Africa.  What some are enduring this moment in a lot of circumstances that are anything but pleasant, but they know God is right there beside them.

And I don't know how I even got here, so I will blame it on the heat.

But I know God is good all the time.  I know He is mighty.  I know He hears and He heals.

I know He is good whether I am freezing in Siberia or sweating in Ohio.

And more-so than I will ever know.  









 





Tuesday, June 26, 2012

Regenerating



Yesterday, I woke up and told Scott that the one feeling I had been missing forever so long, was finally breaking back through again - I felt like my cells could actually, maybe, hopefully - regenerate.  I felt like my bone marrow might be alive after all.  I felt like maybe if I expended some energy, I might recover to expend energy again.


I haven't felt that way in ever so long and it felt really, really good.


For the past long time - even before chemo - I just felt like if I expended energy, it was not going to be replaced.  When they told me it takes white blood cells five days to replenish and a lot longer for red blood cells, I kind of already knew that in my bones.  Even before I knew my diagnosis, I had felt that way - if I used up my energy - it would take a long time to replenish it.


Then with chemo, my body just would not, could not replenish that energy that starts deep in the cells and bone marrow.


I was like the Hebrew nation over ran by it's enemy armies during the time of Judges - hiding and laying low, not daring to come out of the caves.


But yesterday, there was a strong inkling that something was alive in there after all.  And replenishing.


Scott and Scotty worked on a project that we had actually started last summer - replacing the boards on the raised beds.  We have two sides to our garden - one side is Scott's and is all vegetable.  Those boards were replaced last summer.  My side is all perennial flower beds and had not been finished last year.  So they completed them yesterday.


They look really awesome.


I stood at a back upstairs window and remembered the first six raised beds we put in ten years ago - they were made of too-thin white oak boards I had purchased from the Amish sawmill behind Cinnamon Lake for one dollar - that's right - $1 for each board because they had planed them too thin.  So, I of course, thought them perfect to put in dirt.


They did survive almost ten years.


2003 was the year that Scott had several knee surgeries, so I did some of the work myself.  It was also the year that our son was in Iraq.  We had such a knot of fear in our stomachs that whole time he was gone, and working outside was a good way to get away from the news on the television and internet and radio.


He was in Fallujah when it was falling apart, and those people shown on TV were not all that fond of any American soldier in their vicinity.  I remember watching those from Fallujah, see their hatred, realize my son was in the midst of that, and I could not watch anymore some days.


So we went outside.


Scott was on crutches most of the time, but he was right there with me laying things out and determining how we would do this, probably to make sure I left some room for vegetables.  We didn't realize how much "dirt-hauling" we were setting ourselves up for. 


It was more than a couple of 'truckfuls'.  


But, watching them yesterday, made me start to cry - even on the best recovery day yet.  Not because they were working on my side of the garden and doing what I had wanted for a while, but I was overcome with emotion because out there in our "recovery" garden as we had called it in 2003 - recovery from surgeries and recovery from the emotional fallout of having our son in harm's way - but out there was that same son, working with his dad, to please me with something beautiful.


Perennial flowers only give us one thing - beauty.  I don't harvest any of them to use.  They take a lot of work that Scott has taken over this summer.  We just love them and the beauty of one bloom and then the groups of blooms.  They relax us and regenerate us.


But it was even more beautiful to me to watch that son out there that we were not sure we would ever see again while building those raised beds the first time, but there I stood looking out into my backyard and was watching him repair them.  It was beautiful to watch him working with his dad, out there strong and doing well.  It was beautiful to me to look down at them in the garden then look over and see two sleeping wee ones that are getting suddenly tall and skinny, and know they are a gift from God the Father above.  They would not be here, if he had not come home.     


It was all pretty miraculous.


And it was my best recovery day yet.


***


You might glean that I am spending time in the book of Judges in the Bible.  I have actually made it almost to the end of the life of David.


I love David.


Along with reading that, I am reading the historian Josephus.  I am pretty intrigued and even though moving along slowly have opened my jaw in downright amazement at times.  I have read that the writings of Josephus are accurate on archaeological reports, but what has been fascinating to me is how he "fleshes" out the stories I have read for so many years in the Bible.


And don't worry, I am keeping in mind that Josephus is not the inspired Word of God, but nevertheless - I'm liking him.


This morning I read about Absalom, oh Absalom!, and was reminded again how even the one's that God loves and directs and blesses can end up on the road to calamity because they want to overlook *things* in their own lives.


David lost his kingdom for a bit and was shamed and lost two sons because he didn't take care of evil and sin that was right under his nose.


He ignored it so, that his son Absalom thought he needed to step in and correct things.


Oh, it's still hard to read even though it is thousands of years later.


So it made me ever so thankful to God this morning for my children, and I prayed that hopefully our kids would think on our sins and know that we are repentant and forgive us, and remember our times of standing against sin and protecting them, and be glad.


***


I am still drinking my one half cup of coffee each morning, and since yesterday morning at 6am, I am having two good days in a row.  Which is crazy.  Crazy good.


And enjoying a lot of blessings surrounding us, and resting and eating doing just a little bit more and loving it.


Yesterday, I played with elephants and cows and sheep and polar bears and dinosaurs - all placed on one farm, then put a pair of snippers in my hand for half an hour and I am not needing to take whole days to recover energy lost.


***


This is a Psalm that David wrote when fleeing from his son, Absolum.  For my brain exercises, I replace "foes" with "cancer" as well as "enemies" and "wicked".  It's kind of all the same thing in my brain in a lot of ways.




Lord, how many are my foes!
    How many rise up against me!
 Many are saying of me,
    “God will not deliver him. 
 But you, Lord, are a shield around me,
    my glory, the One who lifts my head high. 
 I call out to the Lord
    and he answers me from his holy mountain.
 I lie down and sleep; 
    I wake again, because the Lord sustains me.
 I will not fear though tens of thousands
    assail me on every side.
 Arise, Lord!
    Deliver me, my God!
Strike all my enemies on the jaw;
    break the teeth of the wicked.
 From the Lord comes deliverance. 
    May your blessing be on your people.


Psalm 3  












Sunday, June 24, 2012

A song and a prayer


The OSU James Cancer Center / Stephanie Spielman Center prides itself on "teaching their patients".  And they do an awesome job of it.  You can hear them teaching a new cancer patient every week somewhere in the halls and rooms and beds and recliners - they are telling it all over again and again.  And they will patiently tell that same patient a lot of the same information over and over again, along with the new information they need that week.

After this past week, I am a slow learner it appears.  

'They' teach you about chemo at the beginning so you know when to expect "fallout".  Carbo hits you pretty hard on day 4, day 14 and day 21  making your hemoglobin and platelets just wash out and look like they were consumed by mustard gas - because maybe that is part of the compound of carbo.

At least with my treatment schedule.

Taxol hits you day 2, day 7 and day 14, and then for however long it wants to linger around, washing out everything.  The compound that makes up Taxol is non-soluble in water.  In fact, after reading the following quote one feels a bit - well I am not sure of the correct word here so I'll just let you read:

"Taxol is given into a vein, but in order for the body to absorb the drug, it must first be dissolved in a solution. Taxol's history began over forty years ago. It was found to be virtually insoluble in water. It had the solubility of a brick. The compound wouldn't dissolve very much in any solution. Without a way to get it into a cancer patient, what good was it? It was discovered that something Taxol would disolve in that "might" work in a reasonably "safe" intravenous solution in humans, was an elixir made of castor oil and marketed as Cremophor EL. It was the "only" answer. However, this castor-oil carrier is suspected as the culprit behind the misery which includes nausea, vomiting, joint pain, appetite loss, brittle hair and tingling sensations in hands and feet (neuropathy). The much ballyhooed drug was no panacea."

And yeah, I am reading more, and my reading comprehension was just fine on this article.

'They' keep teaching you this over and over because they know your brain is not working so well, and that you won't remember.  'They' also want you to be prepared and know that if you have had week after week after week chemo treatments, that you are being hit with all those treatment side effects sometimes on the same days.

It's a cumulative effect and I have had some pretty hard day 14's that include day 21 and day 7; or day 21 that include day 7 and day 14 as well.

Each Wednesday they ask me my energy level, then look at the calendar, point at it for me, and tell me "this is because you had Carbo 21 days ago, Taxol 14 days ago, and Taxol again 7 days ago".  And, you've had nine Ro treatments in that same three week period.  When you feel like that, "go to bed for a while" 'they' say.

'They' don't want me to forget to allow my body time to rebuild.

I forgot.

I clicked my heels together after my last Ro pill a week ago Friday and wished myself anywhere else, gave myself time over the weekend to recover, then felt much better by Wednesday, but Scott was still suspicious that my body just might quit with that last chemo round.  Me too, a bit. 

Then they released me from chemo.  I felt better on Thursday and spent some earnest time on the treadmill.

I was on my way to Oz, with the wicked witch nowhere in sight.

I even did a slow, slow, slow - what some might call laughable in most circles - jog for a quarter of a mile.  It felt good to just start getting my body back a little.  It felt good to not have to fast and take the Ro pill on Thursday.

I was done with chemo, thought Dorothy hopefully.

The remainder of Thursday morning was then spent sitting outside and cautiously sipping my first three sips of coffee in six months, and relishing the smell, the taste on my tongue.  I was sitting in the shade with Scott, but looking towards the sun.

Without sun glasses.

I was making plans for Friday - Scott and I were going to tear out a flower bed.  We might need to buy a new plant.  I have a million things I want to get done.  I was rolling.

They have warned me and warned me and warned me about wearing sun glasses.

I woke up at 4:30 the next morning with a whopper of a migraine headache.  Like lay in bed with two pillows over your head for a long time type migraine.  Like I thought the right side of my brain was caving in migraine.

I think the wicked witch caught up with me.

Then I woke up Saturday morning with my right eye a little swollen, and was short breathed on the stairs every time.  Um, yeah genius, that's what happens on day whatever heck the day number was after several treatments of Taxol and Carbo and Ro.  

I am thinking they are going to talk really slow to me the next time I am down there and enunciate each word so I hear them and comprehend and remember this time around..... They might even bring in some flash cards to help me out with it all.

Flash cards that say something like "bright light" and on the back it says "sunglasses".  Cards that say "chemo" and on the back it says "limited sun exposure".

Flash cards that say something like "hey stupid, hang your sunglasses by your special SPF-outside-hats"........

And don't forget that hopefully last carbo kiss around week three, because it won't forget you.

***

Today was a bit of a mile marker - I went to the "plant" part of Walmart, and the "plant" part of Home Depot - and then even went inside the store - just to look at summer things.

I have almost missed summer it appears - it's all on clearance.  I normally like to go inside both stores and sit and feel each outside chair for "cushiness" and determine if it would last for twenty years like our Martha Stewart Collection has that we bought in 1992.  So I thought, hey, I need to see what's new this year and I find that Walmart was selling it all at huge discounts.  Home Depot hardly had anything left.

It was a bit sobering. I had missed winter clearance, spring clearance and now summer clearance as well.  

While I was slowly walking around Home Depot outside, looking at plants that might have missed a few waterings, Heidi called on my cell phone.  We chatted a bit, then she said she wanted to plan "just a day with me", and I told her that would be awesome.

Then she said "I really miss you mom".

Missing summer clearance sales is nothing.

***

When Heidi was a senior in high school she blew off high school and did "Post Secondary Option".  She went to college and got most of her gen-eds under her belt.

She loved it.  She had worked as a waitress, had saved money, bought herself a car, made her own car payments and now she was able to drive to Wooster to Wayne College for her senior year.

She got her schedule and was pretty pleased with it - she got Fridays off.  She looked at me and said "Mom, why don't you see if you can take Friday's off and we can go places??"  We both like to comb through thrift stores or garage sales or such and find things we absolutely cannot live without and take home and love.

We both love to get into a car and see where we end up.  And eat someplace we have never been before.  And if we get lost, it's ok, there has to be something to see or do or eat or buy where we are at as well.

Plus, she has a better sense of direction than I do.  Even if lost, we would have found our way.

She loved to drive her little car everywhere.  She wanted me to come along.  I remember I wanted to so badly, but didn't think we could afford it.

There have been so many times since then I wished I would have responded differently.

Wished I would have gone with her to my Grandmother's grave in southeastern Ohio.  Wished I would have driven with her to Lake Erie and sat on the beach for the day.  Wished I would have gone and explored the neighborhoods of Columbus with her.  Wished I would have taken the weekend and gone with her to visit her sister at OU.

I wished I would have.

I had a sneaking suspicion with her gusto for adventure, that it might be one of her last summers at home.

I was mostly right.

When she transferred to OSU two years later, and got an apartment with two other friends, it was a year long lease.  And my Heidi-girl, would not be back home again.

We always think there will be more time some other time.

***

For some reason Heidi and I were driving home from somewhere in her car the summer after she graduated, and she said she had a song I might like.  She was into "vintage" music - mostly meaning music from my generation.

She played this song for me.  And I made her play it again.  And again.  And again.  The whole way on County Road 620.  The whole way to our home.

Because I knew she would be gone soon.

And this song said so well how a mum feels riding down that road with their child.

So, I am going to recover some blood cells, then I think Heidi and I have some thrift stores to get to.  And some cheesecake somewhere along the way.

And not put off any more special requests.


 









Thursday, June 21, 2012

Coffee time!!!

My husband and I had a long awaited date this morning.  We have talked about this date almost non-stop for a few months.  We have envisioned it pretty much like it happened - the sun was "morning-new" and shining.  It was hot.  We were in the shade of the trees we planted a long time ago and begged to live.  Not many did.

We, we - he and I both - had coffee out in our garden.  Together.

I drank half of a half-cup of that forbidden drink, and it was so, so, so good.  My stomach was not so sure, so I did not finish it, but I smiled for three hours after that first sip.

We looked at each other and smiled, almost down right made my toes giggle.  He knew what I had waited for, for ever so long.  I looked at our pink perennial geraniums and remember planting them years ago, and liking them because they did well in our clay soil and multiplied.  They are dispersed everywhere now, and I looked at those blooms and smiled because we have looked at them every summer for probably ten years now.

Together. Out in the garden.  Drinking coffee.

Ten years ago, we didn't have the time to sit and talk to each other.  Ten years ago, he hit the pavement running as soon as that last bell for summer break rang in the school halls - he had things to pay for - like weddings and that first college tuition check that lets your kids back into school. Ten years ago, I was up and gone and driving to work watching the sun break in my rear view mirror a lot of mornings.

While he was recovering one summer from yet another surgery, he used to text me and tell me how the sunlight looked in the garden at that time in the morning, and how the birds were doing, and what the temperature outside was.

The last couple of years we have spent a few more mornings together out there.  And treasured it sweetly.  We knew it was a sweet time in our lives.  We knew moments like that don't last forever. We knew that we had waited for that for a long, long time.

We've had bad times.  I won't pretend like we haven't.  Even if I did, I have three kids that would line up as witnesses telling you what it takes to get to that point in life in a marriage.

Realizing that, we treasured this morning all the more.

And we are still celebrating.

Even though my hemoglobin is telling me I am dead tired.  But, even though I am having bouts of "just lay down and don't move for two hours" I am having "spurts" again, so I "spurt", then hit the wall and rest, it's kind of cyclical like that.

They have given me blood transfusions for higher hemoglobin, but I've had enough of other people's blood coursing through my veins - and even though I appreciate very much what the Red Cross does to get me that blood when I need it - I haven't liked it, so I was glad the discussion did not come up yesterday.

So, I'm kind of up to two hours of daily activity now.  That includes brushing my teeth multiple times.

***

A friend of mine from our House Church emailed me last night and said she was so glad I was done with chemo.  Then she told me that since I had started chemo, and had given up a lot of things like coffee, she had given up chocolate ----- what????!!!!

I couldn't believe it.  I couldn't believe how many times she had said "no", waiting, waiting.  And praying.  They have been incredible in their care for me on this journey, and then this - I didn't know what to say.

I'm still not comprehending it all.

But, this morning in the garden was good.  Lay down and recover is good.  Not having to worry about getting my blood work up enough to get back into chemo next week is very good - I can just stroll down recovery lane at a nice leisurely pace.

Imagining Linda eating her first piece of chocolate after six months - incredible.

Drinking coffee with my best friend this morning after six months of waiting - priceless.









Wednesday, June 20, 2012

Chemo Done!!





Today was monumental.

It was the last day I rode the elevator to the fourth floor of The Stephanie Spielman Comprehensive Breast Cancer Center.

It was the last day I signed in at the desk and got my wrist banded to compare to my chemo compound from the pharmacy.

It was the last day that I took off my shoes, my coat, my everything I decently can to get to my most honest weight so the pharmacist can make up my chemo infusion and chemo pills accordingly.

It was the last day that I sat in a room and wondered about blood results, wondered about my lower blood pressure, wondered about my temperature, wondered about steroid fallout.

It was the last day that I met with my study-nurse-manager Julie - there were a few tears.  We have become friends along with her helping me every step of this journey.  I found it incredibly difficult to tell her good-bye.

It was the last day that I answered 86 questions to three different people to satisfy the study I am in.  Was in.  It's all done for now.

I AM DONE WITH CHEMO!!!!!!

For now.  I may revisit the chemo floor after surgery, but for the next, oh say eight weeks, I am done with chemo for sure.

Take that Space Monsters.

I don't know how to react.  There is a part of my brain that is almost afraid of being finished with chemo for now.  That part of my brain is saying "DANGER! Will Robinson, DANGER!", because weekly chemo has been the only thing keeping my savage beast of a cancer in check.

It's now five weeks until surgery.  They want it to be four  This cancer has a proven history on how fast it can multiply from one little cell, to like ten times the population of China in a nano-second.  There's that one part of my brain that is a little concerned.

BUT, the rest of my brain is screaming "I'm done with CHEMO!!!!!"

No more carbo bags being delivered to my room with my name printed across them under the words "DANGER - NUCLEAR DRUGS".

No more staring at those study drug pills on the third dose day, and wondering if my stomach will really accept them.

No more Taxal.  I will still deal with the fallout from that, which includes - but is not limited to - neuropathy, headaches, vision issues, blah, blah, blah, blah, blah, but my liver and spleen are not going to threaten to pack up and leave me in a nasty divorce now each Wednesday.

They almost had the stomach in on the deal.

*******

My blood work was pretty dismal again today.  Dr. Mrozik and Julie came into the room and said it was low, lower - but they still wanted to do a manual count - just to be sure.  If it still came back low after the manual count, they told me I was going to be "released".

Released from chemo.

Kind of the same thing as being released from prison I imagine.  Or being lost in space and finally sent home.  Or maybe kind of like walking out of Iraq after a long deployment.

The manual counts came back only a little higher, so they told me I . was . done .  All because we didn't want to lose the surgery date in July.

Slow down and soak that into your chemo-sensitive-sun-rejecting skin pores, Karen.

I missed my last treatment.  My stomach and gastro track and liver and all other innards are standing up and singing the 'Hallelujah Chorus' -- and I do not mean that irreverently.

They really are.  

I don't know how to close the door and say "done" on this.

*******

The last weeks of Taxal have been mind altering.  My brain has been working even more oddly.  My vision was getting worse at times.  I started having headaches.  I cannot be outside in the sun for more than three minutes.  The last two weeks, a rather severe blanket of depression fell over the whole area.

I could feel my body stepping down a long slow descent and it didn't like the terrain one bit.  I could feel it looking around for any foothold, anything that might bring it back up a step or two, and it could find none.

I know now that God is in the descending as well as the deep.

They told me I cannot have that Panera Bread Fuji Apple Salad for two more weeks.  My blood needs to recover, or I "could still land in the hospital with an infection"....... So two more weeks of bacteria-free food, then I am thinking I might gain twenty pounds.

Which is good as I have been losing a pound a week since my stomach decided to ulcerate.

I've already told Scott the various salads I am wanting:  plain old cole slaw; bok-choy salad; garden grown leafy green salad; fennel bulb salad - it's a long list.  My personal kitchen chef is going to be a little busy.

He is even growing some super cancer fighting Swiss Chard - we have no idea how to prepare it, but it is supposed to knock down cancer, so he bought it, planted it and soon we will harvest it and eat it.

It is hard to believe that I am that close.  It is hard to believe that already my body is doing something it hasn't done for quite a while - desiring certain foods.  It is hard to believe that my taste buds will be coming back.  It's hard to believe I'm at the end of that never-ending tunnel; that vast and dark and lonesome space adventure; that deep, deep valley, that I despaired of ever exiting.

*******

Today, I thought about my first chemo injection.  It was in a chemo room at OSU main campus in a wing reserved for the first trial phase of new drugs.

Scott was sitting in a chair at the foot of my bed and he watched them insert the IV cath in both arms; he watched them draw eighteen vials of blood; he watched them hang up the bag full of chemicals that had all kinds of danger warnings posted all over it.

I watched him and he was watching it all, taking it all in.

They started the IV drip, then piggy-backed the chemo drug onto it and that's how it started.  It didn't hurt that first day at all until the steroids kicked in.

But when that chemo IV started to drip, I knew our lives were forever changed.  I looked at the IV bag, looked at Scott, and there was a tear coming out of his eye.  There was nothing else he could do but pray and watch.  And feel.  

Today, after the doctor and nurse had left explaining the situation, we were alone in the room again.  They gave me a "cadillac" view - the corner room full of windows.  The view to the north gives you a view of the new OSU Hospital wing we have watched being constructed for six months; the view to the southeast sees the downtown Columbus skyline; the view directly out my window was a busy street beside of a busy highway, but next to that is a peaceful bike path that I have watched the whole six months.  I've seen it freezing, leafless and bare; then watched the new leaves, new life happening during the spring months; and now it is a shady path that I see walkers and joggers and bikers share and it looks so serene.

I looked at all of that, and remembered how many times I have looked out those windows wanting to be anyplace else other than where I was at, but at the same time so glad I was at a place such as this; I looked at all of that, then looked at Scott, sitting in a chair with the sun behind him, looking at me, and there was such a relieved smile on his face.  And a tear.

We walked out, hugged everyone, thanked them profusely, both sides saying how much we were going to miss each other, said our good-byes, and looked at each other again before getting on the elevator - we were both tearing up, yet so wildly relieved and happy.

Those people on that fourth floor have become so dear to us.  So lifesaving.  So giving and loving and helpful and encouraging.  And they were so happy and smiling all the while, while working on the toughest wing at any hospital.

It's been a long journey, a descent into a deep valley, and now we are climbing out.

*******

I have listened maybe a thousand times to an audio message about meeting God in the desert.  It tells about how the children of Israel left Egypt and slammed into a desert.  They were hungry and thirsty and felt betrayed by those who led them.  They were so miserable, they wanted to go back to slavery.  Back to Egypt.

This audio gives good insight to a God that met them with their every need.  I wasn't sure I had the courage to stand beside a large body of water with my enemy breathing down my neck, and walk through the waters staying dry, to the other side.

I have never seen manna in the desert until now.  I never knew what it meant to have only God to sustain you and yet live in a community of help.  And love.  And hugs.

As usual, I am still processing.

But my body is singing praises to the One who has seen us through.

This part.  We have made it to an oasis.  We have made it to the rock that spurts out living water.  We have made it to the shade and can see the valley opening up finally.

God has met us.


http://www.followtherabbi.com/uploads/assets/audio/milkandhoney.mp3













Tuesday, June 19, 2012

What if?


Long ago, a little boy said to me, "your words hurt my ears".

It wasn't because he had been naughty and was being disciplined.  It wasn't because he was being told he was watching too much tv again.  It wasn't because he wasn't allowed to play outside until midnight.

It was more because of the harsh realities of life.  When those hard things in life, whether emotional, spiritual or physical cannot be made to look better, feel better - when they are put into words - they hurt.

Words like, "I don't know why people change sometimes".  Words like, "yeah, there are a lot of hurt people in this world who like to hurt others".  Words like, "it hurts really bad now, but maybe, just a little less tomorrow".

I think now, he and his sisters would say "your words hurt my eyes".

So, sometimes, I write about things that are not so sensory painful.

***

But not today.

These chemo combinations they give you, can cause you to reflect on a lot of things.

One being, well, mostly living.

But this past week, thinking a little on the last six months, I wondered: what would happen if we treated evil and sin in this world like we treat cancer?

***
Someone asked me the other day if I had it to do over again, would I have done the study and put myself out there with the three days a week Ro chemo regimen, on top of the usual weekly IV Taxal, and the "for good-misery-measure" every three weeks Carbo thrown on top of all of that.  Would I have done the study drug again?

Would I do it all again for six months?  Would I succumb to the "chemo-blast" and lose those first three months to nothing but medications and pain and trying to recover and hurt and basically living  in a fog that is in a lot of ways mostly memorable, but wholly not easy to recall??

Would I spend these last months with a bone marrow that was a bit fussy and mostly refused to recover; depleted blood cells that isolated me from any germ, and most human interaction; deep channels of weariness and some despair - would I do it again?


I would like to say "yes - in a heartbeat".  But, in all honesty, I would probably take three minutes for consideration this time.

If it meant that I was given a chance at beating this, I'm pretty sure I would say the same thing again - "how do I sign up?"

would get back on that boat to Haedes.

Really, there wasn't all that much of a choice in the whole thing.

It's hit me pretty hard this week, reading a little more on my disease and realizing that if not for my aggressive treatment my life would be a completely different story right now.

You might put it under the column "hopeless".

But because I fell into the hands of some that treat aggression with like aggression, I'm here typing.

I did not get on that boat with the intention of coming off feeling better, feeling like my life had been enlarged, feeling like I had done the right thing.

I got on that boat for only one reason and that reason was that I had caught a glimpse of my enemy.  I was alarmed and rightfully fearful.  I had enough knowledge and enough people telling me what this could do to my body.  My life.  

And it had a whomping head start.   

My enemy is predatory in nature, and wants to consume me.  It is fast and deep and cunning, to the point that you have to take drastic measures to overcome it.  This enemy is evil to it's core and wants nothing but my suffering and hurt and ultimately, it wants me.  All of me.

I couldn't just hand that over to it.

And God of all things was standing at the door saying "you can't quit this".

I have quit other things when I didn't like the looks of the battle lining up.  I have shrunk from the battle line not wanting to confront or try to conquer or keep in the battle - I have walked away from such things before.

But with this, this foe, you cannot quit.  I wake up in the night feeling as if I had wrestled a strong alligator and was losing.  I wake up at night in pain and want out of the prison.  I wake up at night with a start and wonder about time, my body felt so depleted of any life giving help at times.  And, so short of breath.

But knowing this enemy, I could not walk away, I could not step back, I could not stand down.  It had to be faced and fought and even though we have won some battles, the war is long from over.

I really had to look this evil in the eye, and do what had to be done to overcome it.  To fight it to the end.  To stay in the battle even when I was too weary to move.

It's a fearsome foe, and is one that I cannot sadly pretend away.  And in some ways, the cure is harder to withstand than the disease.

But, there is no choice.  It has to be purged.

***

What if we treated evil the same way?

What if your local child predator was sent to "cancer" treatment for six months - and that was only the beginning?   Because we thought a child's soul more important than cancer cells?  Because we really believe that evil spreads like leaven?  Because we really know that we can change lives by confronting hard things?

What if the biggest bully you know - the one that makes everyone feel ugly and worthless and despair for wanting to live - what if they were sent to a center to remove that blackness from their lives?

What if - what if - the sin I find in my own life, hiding out in a corner of my soul, the sin of pride or prejudice or arrogance - what if I woke up one morning and wanted to have that sin taken care of seriously, and could go for treatments that would eradicate it?  What if you could have it sought out and destroyed before it destroyed you?  

Cancer is the closest thing I have encountered that I can equate to pure evil.

This was the one time in my life that I could not show up, clumsily fight it, then walk away when the heat started to scorch me.  I could not pretend like it was a lesser battle, I could not pretend that I could throw up just anything in it's path and that would be enough, I could not pretend I could win with flimsy battle gear.

I am in this for the whole war.  And I know I cannot afford to fight it with substandard measures.

Yet, when it's life altering, life crumbling evil, we react differently.  

***

The medical community winces every time they hear this evil one's name.  It's that bad.  But they don't back down, they meet it on the field with everything and every ounce of energy they can muster.  They study it and know it and want it fought and they want to win, even when presented with overwhelming odds.

One of my oncologists told me once - knee to knee, face to face, eye to eye  -  that he has been in school for twenty-seven years for this one moment in time - to help me fight this vile, evil enemy.

Twenty seven years.  Hard studying.  Hard memorizing.  A life dedicated to knowing everything you can possibly know to beat an evil enemy trying to overtake one of your patients.

What if we treated evil and sin the same way?  What if we send it to a specialist to do everything we can to make sure that evil is removed?

I am finding my little forays into studying evil something of a joke.  I find it hard to spend twenty-seven minutes in prayer and study on any given day to meet my mortal enemy.  Let alone, twenty-seven years.

Seemingly, I don't take it all that seriously.

So we use the big guns on cancer, all of the technology, all of the brains, the most extreme methods made known to man to fight and hopefully win - we do all that for cancer, and spend less than twenty-seven minutes on evil.

Which mostly doesn't take lives, more likely "just" the souls.  

I have given up a lot of my life and spent lots of money to fight this one evil.  I have allotted my time to nothing else.

These battles are so similar - the evil cancer and the evil that hurts our souls are maybe twins separated at birth. Yet, I have treated them with immeasurable irregularities on the one hand, and concise strategic plans on the other.

So if I had to say would I do it over again, I would not want to, but knowing my enemy would realize I have no choice.  And I know my enemy on more than one front now needs a lot of work and study and preparation and pain and suffering and hurt and toil.

There's no pretending with cancer - you better know.  And there should be no pretending with our ancient foe - evil.  Whether societal evil, personal evil or any of the long list you could place there - any of it should be taken seriously and fought on an even more difficult level than cancer.  

With this enemy - this fight - there's no playing around with it, there's no choice.










Friday, June 15, 2012

Cancer Prep List

I am still dealing with some effects of steroid-misuse....... I finally fell asleep this morning at 3am, and slept for five hours which is a notable improvement over the last two-plus days.

As I was laying awake again last night with the steroids running all rodeo through my blood and the Ambien that I had taken hiding somewhere in a sulking corner, of which the Adavan I took two hours later joined after one quick look around - I was left to my own devices dealing with the drug that hi-jacked my body and I am laying there making up more lists.

Some of them - and if you have had poor experiences with steroids as well, you will understand this - are *not printable*, but this one, makes the cut.

Mostly.

What to do Before You Start Cancer:

1.  Go to your dentist.  If your blood counts are low that's one more thing in your life that you cannot do unless you are having huge problems.  I am brushing my teeth like five times a day along with using a good non-alcohol rinse even more times on some days, so I'm not probably getting a lot of plaque buildup, but I do miss my dentist and wish I would not have been so lackadaisical about my two times a year insurance paid appointments. Could it have been any easier to get there???

2.  Take care of all fungus.  Gross to talk about, but true life here folks.  I've dealt with a fungus on a toenail for several years now, and leaned away from taking the final meds that would have finally *nailed* it gone - but the *super* toenail fungus meds were like $300, so I didn't do it.

Getting out my summer shoes seems to have reminded that toe how much trouble it could cause with one single rash.  They really don't like you to deal with this when your blood counts and immunity are low.  They keep leaning towards the idea of the old marketing "KISS method"  - Keep It Simple Stupid!  Don't make your body fight anything else it doesn't have to - narrow it down to one foe - the cancer.

So, my simple backwards looking advice - pay the $300 for the meds and get rid of any lurking fungus pronto!!

3.  Be married to someone that takes the computer keyboard with him to bed on nights he realizes steroids are going to have you awake all night.  

It'a a cruel kindness someone has to be in charge of because:

  1. First, you will type crazy things and say things you should not while the mean nasty bullies are coursing through your blood stream untamable.  In fact I can feel some blood vessels widening just to let them cruise on by - it's like they are giving wide berth to the pirates in the river and if we have to make it wider to avoid the bloody jolly rogers, we certainly can suddenly.  Trust me there's no fight in my body when it sees the Decadron-Bully-Monster marching in - they don't even walk up to it and say "hey, can't we just all get along here?"  No.  My body just takes one frightful look and goes into sheer full on retreat and decides to let it have its way, leaving the quivering unprotected mass behind under full control of the Monster-Decadron.  Maybe it's kind of like being in a 1970's Rolling Stones hotel room.  Nothing is recognizable in a few hours.  
  2. Secondly, you won't care if you type crazy things and say things you should not while on steroids.  
This should be on your annual marriage checkup list.  Someone has to watch that gate for you when you get a trigger happy steroid dose.   


4.  This might be part 3 of number 3:  Long before you meet steroids, learn to laugh at yourself.  Otherwise, I could easily see where violence could come into play quickly.  And I am only half kidding.  Think of it as taking PMS, Menopause, Male Aggressive Disorder - along with a couple of other ingredients like puppy dog tails or such - but think of putting that all into one pot and simmering it for three days making it ten times more potent than the original 500% strength it already was, then injecting it into your blood stream.

You better be ready to laugh when you partner lovingly says things like "talk lower"; "calm down, sweets"; "it's not that big of a deal".  Because, as your head is spinning around trying to decide which piece of flesh you can get the easiest bite out of, you will want to, um, laugh at yourself and how extreme you have become.

That takes a lot of pre-practice.

5.  Get a stove vent that vents OUTSIDE!!  Smelling extreme foods, while cooking or having a cloud of dense fog in the kitchen is not good on most days, but when dealing with chemo it's a deal breaker.  We have the builder grade typical stove vent that vents all stove top gases right back out the top of it, right back into the kitchen.

We have been trying to find someone that is brave enough and cheap enough to break through the wall and do a proper stove vent, but they seem to be few and far between.  Scott was frozen out while I spent a good part of January, February and March with the doors and windows all open while he cooked.

It was the really strong smells, like bland potatoes cooking, or toast, or hotdogs and beans that could completely do me in.  Let Scott pull out a heavy stove top pan and start a good saute - and I was locked in my room for an hour until the air cleared.  Roasting meat was out of the question for four days a week.

My iron kettle stomach that rarely so much as caused me to gag, has been broken this past year.  It's as squeamish as sixth grade girls at a horror movie now.  

If I do another go-around of chemo, I'm guessing we might just put that hole in the outside wall ourselves..... and maybe, like Pa Ingles, use tar paper over it during the winter or something.

6.  Get your ears pierced.  For like the fourth time in my life.  I've never had good healing results with any of my previous attempts at ear piercing, so I decided to let them "heal" for about fifteen years.  Then, a couple of years ago, I announced to Scott I was going to get them done again.  He bought me a nice pair of earrings that year for Christmas.

They still are not done.  I had not realized that the only places that do ear piercing these days is situated in the middle of the mall.  We don't even do it in the stores now, it's right out there where everyone is walking by, looking, calculating the right spots along with the lady with the placement gun, and it all just seemed a bit much to me.

Not having hair, kind of makes me wish I had done that after-all - it helps "the look" if you can get some big fabulous ear rings to dangle, drawing the eye away from your naked hairline.

The first time I had my ears pierced, was the fall of my seventh grade year.  I had a new friend named Dian, and we seemed a bit prone towards trouble.  She had an older sister that had done her ears, swore it was simple and so we thought we would give it a try one Saturday morning after I had slept over at her place.

Dian took me to her kitchen, proceeded to get out the needed tools and they piled up like this:  one needle threaded with a long piece of thread; one ice cube; one potato.  I don't remember there being any rubbing alcohol or any peroxide present, but with it being the early "hippie" seventies, that's not such a big surprise.  We were "natural" then.  Children of the earth.  All at peace with our environs and all.

She instructed me to put the ice cube on my ear lobe to numb it.  I did.  She then told me to hold the potato behind my ear as she keenly looked at my ear lobe for a good starting point.  I asked her "why the potato?" and she said "that's so the needle doesn't go through to your neck when I jab it through."

Still not any concern on my part.  By the way, I don't remember washing the potato at all.

She squinted but seemed perfectly confident she could do this.  She started to laugh, squinted again at my ear lobe and took a little break to think about it all.

My ear lobe was sufficiently frozen, I told her I could handle the potato and protect my neck, just to go for it.

She closed her eyes and jabbed.  She jumped maybe sixteen inches into the air when she felt it go through the first layer of skin.

It turns out your ear is a little sensitive even when iced.  I didn't yell because I knew she would jump again and it could possibly land a needle in my eye, literally, but she had got it through the first layer of my ear.

She pulled back and sat down, with the needle dangling halfway through my ear, the thread hanging down......

We laughed and laughed, because we were thirteen and because she had jumped so high, then I said "Dian, you have to finish this".  And she said "I can't do that now"......

She did look close to passing out every time she fingered the needle.

Oh, oh, oh.....

I was a little tough, with most of my playmates being brothers and neighbor boys and all most of my first decade of life, so I pulled from somewhere deep and made some lifetime decisions.

I tried to push it through, tried again, and it went through finally.  I now had a piece of thread clear through my earlobe.

It was already hot and angry.  I have *sensitive* skin and it certainly was not liking this any more than it did the four third degree sunburns I've had in my lifetime.

This was way before it was ever popular to do different things with ear piercings.  This was way before I might have been able to pull off having just one ear pierced until I could beg my mom to get me somewhere to get the other one done, like the next time we went to the doctor once a year - which at that time was kind of the proper place to get such things done.

I mean for ears and ear piercings in the early 70's there was one option: you had to have two holes - one placed evenly on each side of your face - and that was the way it had to be.

Hippies might have been all cool then, but there were pierced ear standards.

Dian, recovering nicely and taking control of the situation again, pulled out the thread and tried to fish an earring through both layers of my ear lobe.

Even though she apparently had issues with needles, put a studded ear ring in her hand and there was no stopping her on this mission.  Not any comments from me such as "hey that's not where the needle went through the back" or anything was going to stop that ear looking all cool and pierced now.

But, then, we had the other ear.

I considered my options and it appeared rather difficult to do the other ear by myself with a tiny hand mirror.

Her sister Debbie, who had done this herself I thought, walked through the kitchen and said with a little hint of 'oh what are they doing now -- stupid seventh graders!!' "you HAVE to do the other ear!  Do you know what that's gonna look like if you don't?"

I had a pretty grim image in my mind already.

She was on her way to work.  Or somewhere, so there were no plea bargains with her.  Dian's brother Louie walked through the kitchen and just shook his head and laughed.

We were on our own here.  And from the looks of Dian, it was kind of apparent it wasn't even a "we" here.

I just decided to do it.  I iced my ear, Dian held the mirror and I pushed fast and hard and decisively.  She fished another ear ring into that side and they were both done.

And angry and hot to the touch.  They never did heal up correctly.

There are several "Dian and Karen" stories just as interesting and outrageous, but we stop here today.  I still laugh every time I think of her.

***

When they asked me my first week of chemo at OSU if "needles made me queasy", that is the first memory that flashed through my mind.

"Um, no, I've survived several ear piercings, I'm ok".....





Wednesday, June 13, 2012

My Ugly Foe Again........

Please let me know if you have issues opening this - I seem to be a downright genius when it comes to picking up viruses and such on computers..... I need help.

***

I got into treatment today and it was closer than I thought it was going to be.

As you all can probably recite with me by now, I need my Grans, Absolute line to read 1,000.  It was at exactly 1,000 today.  They have started to manually count it, so the computer will not slide me in under that count doing what computers do best - being too cold and calculating and just plain callous.

To me it makes no difference if the computer coughs out a number like 999.96.  I'm like "that's close enough!!" and call out a "Mulligan!!"  But that puts it under protocol and we cannot proceed.  Understanding this, there are some good people in the OSU lab that actually spend their time counting the cell grids themselves.  They triple check it to be sure that it's not just "human-desire" over-riding perfect counting.

That's a lot of time on their end and I truly appreciate it.

I appreciate all of them.  A lot. 

My hemoglobin dropped a lot, and my white blood cells as well.  I knew I had been tired, but I didn't think it would drop this much until next week.

And you all know what next week is -- THE END OF CYCLE 6 FOR STUDY SUBJECT #6!!!!   The end of this go around of chemo - and it doesn't look good for my blood making a showing at the OK Coral next Wednesday.   

I need a little extra ammo here.

Julie, my favorite study-nurse-manager was not overly optimistic about next week - but, like me,  she isn't assuming anymore either.  She reminded me that after the chemo reductions last month, and then my lowest white blood cell count ever, that I surprised - well really it was God that surprised - everyone just a couple of weeks ago, so who knows.  There are a couple of plans being plotted out if that eventuality happens.  We cannot, do not want the surgery date changed out another week as of now, and she is going to bat for me.  Again. 

I love her.

***

On the other hand, maybe you have picked this up, but it was not a good steroid day for ole' Karen here folks.  I told the new-to-me-nurse today, that even though the steroids have been reduced, I still have great issue with them.  We have mutual feelings for each other - I grudgingly respect steroids for what they do, but I hate them.  And they feel the same about me.

Only I think they greatly lack the 'grudgingly-respect' part.   

I told the nurse that the steroids and injectable Benadryl still need to be delivered s.l.o.w.l.y.  She had a "shadow" today and was explaining how she can do the IV set up and deliver all three Taxal/Ro pre-meds at the same time, and the same speed.  No one has ever done that before - either there or at OSU main campus, greatly respecting the reactions some people have to these pre-meds if given too quickly.

Scott was watching as well, and said the same words nervously out loud and clearly - "she needs them really slow"......  It's always good to have a patient advocate close at hand that remembers dire consequences and spinning heads. 

Alas and alack.   She did not listen to either one of us.

I kind of thought I might be on the losing end of things when she spoke against one of my doctors orders last week.  She said "don't worry about that".  I have a tendency these last weeks to be obedient and not listen to the ones mocking caution at this point.  I mean if I had flown through treatment with good blood counts and no transfusions and no side effects, I might be thinking "over-cautious" myself.

But, I'm leaning towards the one most likely to be called "Sheriff" when the dust settles and the shoot out is over. 

It made me a little nervous from the start. 

After the rogue-cowboy-nurse left, I was in the danger zone again, with "head-exploding" signs going off all around me.  After whispering some vile, angry things to Scott, he made a hand motion to lower my voice.  I was too late to get a room today, and was in a curtained stall.  Everyone could hear everyone else.  Even tight whispers. 

I clamped my mouth shut.  Tight.

I was ready to pick up that brand new IV pump and stand and throw it through the fourth floor window.  If I were a baseball pitcher, I would have beaned every batter.  And been glad about it.

Roger Clemens may be innocent - I do not see this level of evil-hateful-anger in any of his film clips at the time he was supposedly using.   Although his jaw is clinched I've noticed.....

If I had not purposely clamped my mouth shut tight, I would probably be making a return trip tomorrow to beg forgiveness. 

But the nurse proceeded to tell me while she showed me and the "shadow" her technique, how she can setup and push all three plungers at the same time into the IV ports - because she said, and I quote, "I certainly don't have twenty minutes to sit there and administer meds"; then she told me how some seventy year old women had responded; then laughed.  (I'm guessing I will not be thinking kind thoughts towards her when still awake at 5am either.......)

She had no idea how close she was to eating that whole IV stand, IV ports and plungers.

I kept getting angrier and angrier, meaner and meaner and my brain just went into "leave no prisoners" mode, and I wanted to draw out my six shooter and square off with her right then and there.

She needed to do all the pre-meds in under one and a half minutes flat, because, you know, she needed to stand out in the hall and talk for twenty minutes.

I'm guessing this is why they do not publish hospital personnel addresses.

They were super busy today, so another one of the nurses that is wonderful and has been my nurse a couple of times, stopped in after the Taxal was finished, took one look at me and said "are you ok?"  I told her, and tried to laugh as I said it, that "I just need a big sledge hammer and a huge stone to take out some 'roid rage on".

She was a little concerned, wondering if I might be reacting to the Taxal, as I really didn't look so good and the Taxal reaction risk increases the more you get it towards the end.  My eyes were pretty sunk in, and I was a little pale even with makeup and shaking with an oven warmed blanket over me.  She removed my port needle, personally went and got me some pain reliever, and gave me a big hug as I was leaving. 

That helped.  A lot and a little bit.

I overheard fast-plunger-pusher-nurse telling a new patient the computer print out of probable side effects of the chemo pre-meds.  When she got to the steroid part, she said the words "some people just get meaner and meaner".

I think I ground off half of my molars at that moment. I might even have exploded a few blood vessels at that moment. 

My next script may be for a chemo mouth guard to save my jaw joint and molars...... 

***

So, it ended up being a very ambivalent day again.  I got into treatment, but my blood counts were lower than anyone wanted them to be today.

I had another bad experience with steroids.  And they won. 

Carbo kicked my butt, again.

Someone had a light in their eyes though, when she said "hey, you surprised us all a couple of weeks ago and had higher blood counts than you should have then" and I got a chance to say "yeah, God really moved - that was a miracle, wasn't it?" 

I saw sweet Dr. Mrozik in the hall today and she clasped her hands and smiled really big, then hugged me and said "not too long, now Karen!!"

The non-hugger is hugging a lot these days.  

Scott and I were counting on the way home today and added up:

I've had 17 Taxal treatments.  Six Carbo treatments.  (Please properly shudder when you hear that word in high dose amounts.)   Forty-nine doses of Ro chemo.

Seventeen doses of pre-med steroid.

Since D-1 Day on January 10th, I've had 72 doses of chemo.  

That's a lot of "knock-down" and when Kari was kindly unhooking my port needle today and wrapping up my used IV and needles and tubes in a nice taped up plastic drape to throw away properly, some tears just dropped out of my eyes because I cannot process those steroids sometimes, and my head hurt so, and she said "you've had a really hard day" and she looked even closer at me and asked me again if I "was ok".

I told her "it was actually a really easy day" and "I didn't know why I was feeling this way", except that I had missed my wonderful "Benadryl nap"; she said "you've had a lot of chemo, more than most, these last months, Taxal is hard on you at this stage of the game".......

And fast steroids.  

Then she went to get me some pain meds.

I still haven't slept.  In fact, I can't quit the fidgeting and moving and low shakes. 

I go back to what I have learned this week - that I should not, cannot deny the hardness of this valley in the desert.  But, God is setting up that banquet table in this wilderness, and I am looking over the exquisite table and thinking of the goodness of sitting down to a banquet in the presence of my enemy.

***

One more thing weighs heavy on my mind - I know one that has had a much harder day than I had today.  Her husband posted this on Facebook this morning:

"Pray for us today as we go to the Cleveland Clinic main campus. We will be checking into gamma knife surgery to treat the 3 brain tumors that Linda has. Pray that we'll make the right decisions about treatments."

Linda had breast cancer and started chemo treatments a couple of years ago.  She started emailing me in January when she heard of  my diagnosis, giving me tips and advice and foreknowledge of what might happen with things that you just don't talk to anyone else about unless they have heard similar words directed towards them.

She too has an aggressive breast cancer, only her's is "the other kind" which I don't know so much about, but similar things happen, and it was so good to have her to contact me and hear first hand what happens and some of the fallout from it all. 

She was done with her chemo treatments well over a year ago, and then *this* just last week.

I admire her courage greatly.  I pray for her all the time.  Her kindness and openness and honesty will never be forgotten.

Some folks say the internet is impersonal.  I have found it in this instance to be a lifeline.  A treasure given to me to prepare me and calm me and help me when staring down those gunmen.

Somebody to hold my hand when I don't even know which way the bullets are coming from.  Someone who feels the same way about steroids that I do.  Someone who just reached out and helped tremendously.   

I humbly ask your prayers for her.  She's a fighter and loves God.  And has a super husband-caretaker that has been awesome. 

She has had a heavy day, and is heavy on my heart.

I love her and send her internet hugs.  

***

Today, I was touched by different women in different ways.  I hope I never forget that some un-cautious and indifferent words and actions can lay one person low and change lives. Another can make me go continuously before the throne of God on her behalf.  One, with a few kind words and pain-help, can help me get home without spitting out my hurting brain.

If we are to live in community, we must not forget how pain shapes us.  How pain can shape others we touch.

***

Years and years ago I memorized the 23rd Psalm.   Mostly, because in my ignorance, I did not understand the phraseology of "I shall not want"..... I thought memorizing it and meditating on it until I "got it" would help.  It did.

And it is still with me today.

I love David.  I love his honesty in the difficult and hurtful, and downright shameful things in his life.  He killed a lion when young and remembered that all the days of his life.  He remembered a lot of things by writing them down and leaving them for encouragement for others.

Kind of like what Linda has done for me - be honest, write it down, and encourage others.   Only our God sets a banquet table for us in the middle of the desert.  Only our God anoints us with oil.  Only our God overflows our cup. 

A Psalm of David.

23 The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.
Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.






Monday, June 11, 2012

Standing Stone

While riding in the car today with Scott, I started an out loud, verbal list.  It's a hopeful list.  There are some things on the list that I have thought about for a long time.  The official name of the list is "Three Weeks After Chemo".  Three weeks is enough time for my blood to repair and for me to finally indulge in some things I have really been missing.  A lot. 

So three weeks after chemo and one week before surgery, I have a lot of living to do. 

1.  I am going to kiss Scott on the lips.  (sorry if we make you blush kids ;)

2.  I am going to share a glass of wine with him - drink out of the same glass.  I am going to steal something off of his fork and not worry about the germs.  I am going to hold his hand after school and not think about picking up strep. 

3.  I am going to hold those sweet grandbabies - even the bigger ones - and not let them go.  I am going to smother them with "grandmumsy-kisses" and tell them when they think I am done, that they need more.  I am going to wipe their noses and lay down with them when they aren't feeling so well and stroke their hair and faces. 

We will not ask them ever again to put on hand sanitizer before taking off their coats.  

4.  I am going to hug my kids every time I see them.  And when I am hugging them, I am going to say into their ear "I love you". 

5.  I am going to eat a really big salad.  With strawberries and blueberries on it.  And cheese, really good cheese on it.  Fresh salad greens that came off of the dirt pile of a garden just an hour before.  That dirt out there that has so much bacteria in it.  I'm going to eat the salad greens off of there even if they are old and snarly and bitter.  And if that is the case, I will be glad to taste the bitter.

6.  I am going to go sit in the middle of a mall and just watch people.  Just enjoy being around people and conversing some and interacting. 

7.  I am going to eat a soft serve ice cream cone while sitting in that said mall. 

8.  And one of the biggest tests of all - I am going to go to a large discount department store.  In our town that's Walmart.  But it could be Target.  Or Kmart.  Or Meijer.  Or Costco.  Any store that has that many people walk through that many doors on any given day has a lot of germs.  A lot.  I have avoided them like the plague, and now, now I will go into our local meeting place of all of Ashland with a great big smile.  

I might even sit down at their little diner and eat something. 

I am going to walk into that cauldron of recycled air that collects all of the germs in any three county area and keeps pumping them out over and over and over again each day - sometimes even breaking them apart further causing them to do more damage.  I am going to walk into that germy, oozing, sneezing, coughing, viral place - and that's just touching the cart - then I am going to walk on in and check the blue-light specials.  (and my doctors thought I was a little too brain damaged to remember all of that)

9.  I am going to take a long, hot bath.  I am going to soak my muscles that have been longing for hot water therapy for ever so long.  I am going to luxuriate in hot water that has not been boiled up to my chin.  With a couple of drops of peppermint oil in the water to completely relax. 

10.  I am going to get a massage. 

11.  I am going to go outside and pull weeds.   And dig in the garden.  And transplant my flowers.  And touch dirt.  And plants.  And not worry about bee stings and mosquito bites that could now send me to the hospital. 

12.  I am going to drive a car for miles and miles and miles and miles and go far away.  Not sure where yet, but far away.

13.  I am never again going to treat the act of reading and reading comprehension as a secondary blessing.

14.  I am going to pick up, smell, imagine the taste, then purchase fruit.  Fruit that has had 25 hands touch it from harvest to my mouth.  I'm going to touch it, taste it, eat it.  

15.  I am going to take Scott out to a nice restaurant - we have not sat together, perused a menu for half an hour then ordered a meal for over six months.  Longer - the last meal we ate out together was when we were doing some early Christmas shopping.  Last year.  We had no idea. 

I want to sit with him and have someone serve him, and I want to enjoy it all.  We have missed our four-hour-restauraunt-meals a lot.  We have missed trying new foods, new wines, new ideas.  We have missed dipping a common loaf of bread into olive oil and ordering a second one.  We have missed delicate desserts served with flourish.  It was a pleasure that we did not get to enjoy nearly enough because we were always conscience of the cost, but now it seems more important than ever. 

We have missed dining with each other in a large room with other people.  

16.  I am going to get up in the morning and not feel bone-scratching tired.  Not feel half sick.  Or wholly sick.  Not feel a dozen pains.  Not wonder about my blood counts.  Not take my temperature. 

********

That's just a partial list. 

I need a list like this because I don't want to ever forget.  And forgetting pain is sometimes too easy.  With getting some chemo reductions this past month, I suddenly crave coffee.  I could barely smell it three months ago - but I choose not to remember how loathsome it was. 

It is so easy to forget.  And the forgetting makes you live a life that takes away from others that are in the midst of pain - just because you don't remember it so keenly, doesn't mean it is not tearing their lives apart.  Just because you are not feeling it hit you hard now, does not mean it does not hit hard. 

Stuffing it somewhere in the back of your mind and trying to forget the pain only makes the journey somehow cheaper.  Less worthy of telling.  Not as important as it should be. 

If there is one thing I must remember on this journey - it is not to forget. 

That's why there are so many stone pillars throughout Israel - they didn't want to forget either.  They had gone through great fear or pain or suffering and then met God - and they set up a stone stack or "massebah" as a remembrance.  Because they knew that humans are pretty good at forgetting the bad horrible things they don't want to think on, but they also knew you had to remember those to remember how you met God through it all. 

If we down-play the bad, that makes God's intercession not quite so awesome. 

If we over-play the bad, we miss life, and His great blessings that He meets us with while we are in the pain. The "prepared banquet before my enemies" talked about in Psalm 23. 

So as a good balance, I want to make up a list, so I remember, but I want to make up a list that puts me back into living life. Back into eating at His banquet table.  In the midst of the desert.  In the presence of my enemy - cancer. 

The shock of hearing the words "aggressive" and "fast" and "cancer" all in one sentence does not ever sound better or easier or kinder.  But knowing that God has given me this moment - this time, this living right now because none of us are promised tomorrow - knowing that and remembering that makes the good so much sweeter. 

I don't want to ever forget what God has done for me.  How He has met me at my weakest, hardest moment.  I don't want to ever forget that God can take my life tomorrow, or I might have thirty years of life left.  I don't know - but I do know that I have been given a gift.  A gift of knowing Him deeper.  A gift of knowing Him in the storm as well as on the beach.  A gift of knowing Him when evil, like leaven, tries to overtake one of His children. 

A gift of seeing miracles and knowing that He is a God that delights in delighting us on the toughest trails of our journey through life. 

Ray Vanderlaan has a great study on the "Standing Stones" of ancient people.  In the Bible, we are told of many who used such examples to signify great events when they "met God".  In his words:  

"They are lonely sentinels on the ruins of ancient cities' gigantic stones erected by a past civilization, their purpose and message lost to history. They provide a glimpse into a custom that lies behind several significant stories in the Bible, and they are the foundation of modern practices in a Western world 6,000 miles and 3,000 years away. They are "standing stones."
The most impressive collection is in the high place at Gezer, where ten stones, some over 20 feet tall, stand in silent tribute to a long-forgotten event. Their size is probably evidence of the importance of what they represented. How they got there is uncertain, although clearly they came from some distance away.

Long before the Israelites arrived on the scene, pagans in the Middle East erected sacred stones to their gods. If one of their gods (or so they believed) caused an important event or provided a significant benefit, a stone was erected as a testimony to the action of the god. If a covenant or treaty was signed between cities or individuals, stones were erected to declare the agreement and to invoke the witness of the gods. Travelers who saw the standing stones would ask, "What happened here?" and the people who knew the story would give testimony to their gods.

To this Middle Eastern culture, God revealed himself so that he could accomplish the great work of restoring a lost world to himself. His people worshiped him and memorialized his acts of deliverance as their custom dictated: by erecting stones."

I want to be a standing stone.  I am the most imperfect, sinful person some days.  And yet, God has chosen to do a work in me, and therefore, I want to be a standing stone to Him.  

I pray for "clear margins" and "no cancer cells" to show up on that pathology report after my surgery - but I have no guarantees.   And these last months having listened to the ones that He loved struggle over and over and over again in the scripture, makes me realize all the more that I have no guarantees. 

But I have a God.  A Savior.  A Redeemer.  And a Healer. 

Quoting Ray Vanderlaan again:

"No massebah or stele mentioned in the Bible has been found, though it is possible that someday that may occur. Nevertheless, we must find ways to remind ourselves of God's presence in human history and to lead others to him. In a sense, we must become standing stones ourselves, living testimonies to the power and love of God, pointing beyond ourselves to the God who is at work in our world as he was in the world of the Israelites."

I want to be a standing stone, pointing beyond myself what God has worked in me on my journey. 

He has taught me some things on a deeper level than I ever dreamed imaginable. I have sat in His classroom as He taught me all alone what it is He wanted me to know to this date on my God-journey with Him.  He has shown me His mighty wings.  His angels.  His words in a wordless situation. 

I have a God that is alive and acts on the behalf of His people.  

All this. 

What He wanted me to remember. 

And I pray I never forget.  





http://www.followtherabbi.com/uploads/assets/audio/standing-stones-c.mp3

http://www.followtherabbi.com/guide/detail/standing-stones

http://followtherabbi.com/journey/israel/standing-at-the-crossroads