Sweets - Turning bad, simple pleasures, miracles and Passover Seder Plate - how it all comes together

I am sitting here with a big dressing over my port site.  I ever so errantly commented to my doctor today that my dissolvable stitches on my port site and the few dissolvable stitches over my jugular vein had not dissolved, but had popped through my skin and had sat there red and a little swollen, irritating me for  weeks.......

I've had smarter thoughts pop out of my mouth.

She called my surgeon and I was told to go down to his nurse and get them *snipped*.  I had one snipped a couple of weeks ago and it involved a nurse gloving up and getting a pair of sterile scissors and snipping off the naughty end of suture erupting out of my skin.  So I thought it would be more of the same.

I was so wrong.

I waited a bit, then my surgeon and two of his nurses came into the room.  I thought I was just waiting on a nurse practitioner..... I told him, smiling nervously, that this was much more than I was expecting and that I certainly was not expecting him to drop everything and do this for me today.

He said it was no problem, he wanted it done right, then kind of takes command without saying too many more words.  He proceeded to glove up, do a sterile surgical scrub, draped the site, and started to "snip".....  And tonight, there are a couple of holes in my skin, I am on antibiotics for two weeks, and I have an aforementioned huge dressing that is to stay in place for forty-eight hours.

Really.  When I saw the surgical drape and surgical scrub come out of the cupboard, I knew I was in way over my head.

My brain decided immediately that the irritation was not all that bad after all.

But Dr. P. said he "always did everything the right way, and was way too respectful of infection to do it any other way".

I was very glad to hear that and all, but, my-oh-my........ 

Scott had thought the same as me - a few simple snips and I would be done - so he waited in the waiting room, having seen enough sharp instruments for the day.  (one L-shaped needle in my port usually is enough to do him in for a bit) 

While standing over me, scrubbing me up, Dr. P. stopped and paused for a moment, asked me if I had a driver to take me home, then went to work. 

It didn't hurt so much, I was just rather surprised.  The drape covered my face so he instructed me a few times to take a deep breath.

Lamaze breathing and distraction techniques have come in so handy during my lifetime.  

I am afraid to call my oncologist tomorrow with the news that I have a couple of open holes in my body, expressly over my oh-so-easy-to-infect port area and that I am on antibiotics.  For two weeks...... wowsers.  He said he didn't care what anyone said next week, they were not allowed to use my port - it would take time to heal.

And I am to stop in and see him for follow up next Wednesday, so I'm guessing I better not miss any antibiotics, or I'm guessing my "best surgeon ever" just might let an understudy do my next surgery on his clock.

Allow me one more thought:  I've seen a lot of surgeries on animals.  After watching him work today, and seeing the clean results, I am so relieved that he is my surgeon.  He is pretty awesome with those tools.

*******

I was so rather despondent last week, so consequently decided to turn bad.  I did what all bad and despondent women do at times - I ate chocolate ice cream.  I went to a party.  I exposed myself to lots of germs.  I drank a little wine.  And I do mean a little - I still rather favor my liver to stay put for the time being - but even though my palate is completely gone for tastes of any kind, this one wine that had been gifted to us smelled so good.  Then I tasted it, and it tasted good.  It overcame the metallic taste in my mouth and filled me with the reminder that goodness and happiness and fun still existed somewhere in my life.

Just that one wine.  

The chocolate ice cream was a gift from a friend as well.  Morven and David brought it out last Wednesday night and we ate it like there was not a knot of fear in my belly.  Like there was not a lasting bad taste in my mouth from the long day of somber information I had just had placed like a heavy load on my soul.  Like there was still something that tasted good and went down smooth and didn't hurt my belly.

And loosened the knot some in the process. 

The party, was something awesome.  My little twin granddaughters were born Memorial Day weekend five years ago.  They had a little party, and were so delighted with their special tiered cupcakes, their gifts, their celebrated status.  Their aunts and uncles and grandparents and a few friends gathered together and helped them to celebrate their gift of life for another year.

Something about the number 'five' maybe makes one reminiscence.   We remembered the night they were born.  We remembered how very tiny they were.  We remembered poor Chloe having to be placed in the incubator and strong Zoe frowning unhappily at her surroundings soon after birth.

I remembered that I got to hold them in a few hours and cherished that encounter.  And cried.  I watched their heart monitors calm for a bit as I held them, and it reminded me that it is so good to be held even when you are too tiny to know the difference - and yet you do.  In the wee hours of that early morning, the grandparents and parents all had a little party of happiness and celebration in that hospital room with a too tired yet so proud mom and dad; grandparents that once again marveled at the miracle of life; and it is a moment that is sealed forever in my memory.

There are so many things that can go wrong with an early twin birth, and yet two little wee girls and their mum and dad had come through it all so blessed.  Their mom and dad looked pretty beat up as if they had been through another war, but they all came out of it blessed.

So we celebrated all of that on Sunday with a party and cupcakes and chicken wings and spinach dip.

I ate two cupcakes.  They were pretty awesome.

I left after a while to come home and take a little nap.  Millie-bean was upstairs in the crib - which as an honest three year old she would not sleep in anywhere else - but she so loves the crib idea here and was trying to nap as well.  Her dad and I heard a few thumps, and found that she had thrown all the pillows and blankets on the floor to soften her landing then decided to roll over the railing and "bump" out.

She retold her crafty planning to me a couple of times.   

I offered to have her lay down with me.  She snuggled close on my pillow and talked and talked.  Not thinking, I got up and changed hats while chatting with her.

She stared and stared.

Millie, once surprised, is not usually at a loss for words.  I tried to lessen the impact and said "so what do you think of Grandmum's little bit of hair, Millie-bean?"

She said, eyeing my mostly grey-silver sprout of hair now, "you, yuu look like an old lady.  you - yuu should make your hair black again."  Then thinking quickly and using her hand motions and rapid eye movement when spouting forth great ideas - motions that are so dear to me - continued  "Um, yeah, yeah, make it black again."

My hair has not been black since I met Loreal fifteen years ago.

She thought a bit, then said "I think you just wipe it on", and she sat up in bed and showed me how to wipe on the black color, using her blond head as an example.  Then she smiled and laughed and said "yeah! you just wipe it on, Grandmum, like this!"  Then she laid back down and told me as I laid down and held her close "I love you, Grandmum!"

She is the only person other than Scott to see my head without covering and my now little bit of growth.  And even though she seemed a bit taken off guard, she still accepted it all and spouted forth love for me. 

And shared some advice as well.

*******

Now for the big news - I had another miracle today.  My white blood cells did something they were not supposed to do.  After my chemo refusal last week I forgot to call and cancel my appointments lined up today for my "first day of cycle six chemo".

I was too busy being despondent.

And eating ice cream and drinking less than an ounce of wine and going to a party.  

Plus I had a migraine on Monday, that kind of laid me low in a dark room for the whole day, so I will blame the "thinking" part on that. 

As I tried to explain to three different reception desks when I got there and realized my mistake - that I was still stuck in cycle five of chemo and had forgotten to change my appointments - and that no one had much hope of me making it into chemo today, I was told to keep my first appointment anyways.

We waited.  Then they did the blood pull.  Then we waited some more.

They were busy.  All of Monday's holiday appointments apparently had to be squeezed in somewhere this week. 

We were finally placed in a room, and waited a bit more.  Julie came in the room and I searched her face for answers but could not read it.  I said out loud what we had all been thinking the past week and told Julie that this must mean my blood results showed poorly again.

She's quite a poker player, that one.  She smiled really big and said "No, they're good!"  She was amazed.   Scott was amazed no matter what he tries to say otherwise.  I was amazed.

White blood cells take five days to turn over and repair - with good cooperative bone marrow, of which mine is not.  With my results last week being so low, everyone, everyone knew it was going to take at least ten days for it to repair enough to get me back into chemo treatment.  Maybe even longer.

That's just fact - not lack of hopefulness. 

So while Julie is explaining, in flies - flies - Dr. Mrowzik.  She was excited and smiling and very happy.

We had a little party.

Julie and Dr. M in all seriousness wanted to know what I had done to accomplish that feat.  I shrugged my shoulders remembering how bad I had been and said "I ate two cupcakes one after the other".

Then I became an open confessional.  They were the priest and I could not shut my mouth to quit talking and spilled everything.  I had been such a perfect patient, then in a moment of deep despair had gone off the deep end for a week with the lowest white blood cells ever, and could not shut up.

Lying is not my strong suit.    

Scott blurted out "it was the wine".  I wasn't so far gone that I was going to confess that.

I told them that even though I had been so careful to use rubber gloves and my pink impermeable raincoat and blue rubber boots when outside touching plants, that not thinking one day, I had taken my shoes off and put my feet in the grass.  And now had a rash on one of my toes.

They frowned and told me to please not touch anymore plants for the next three weeks. 

Then I said seriously, "you have no idea how many people are so earnestly praying on my behalf".

I should have said a lot of things about the hand of God, how God was working, how He loves to surprise us sometimes.  But all that came out of my mouth was cupcakes and prayers.

White blood cells just don't do that.  Especially with me.  And we all knew that.  But God moved His finger once again, and a miracle happened on Olentangy River Road again today.

Even though my tongue and brain could not spit that out, and praise God at the right moment, we all knew that we were witnessing a miracle in that room today.

*******

I have mentioned before how I love the fact that the God I serve, ordered His people to observe holidays with great meaning and great examples and great word pictures to teach everyone Who He is.  What He is about.  How to know Him better. 

Passover is one such holiday. 

On the Seder Plate there are seven bowls for all to taste.  Some have blessings to go along with them.  Some are questions to involve the children at the table to learn as well.

Sometimes, I have greatly wondered and pondered if my life these last six months have been following the bowls of the Seder Plate.

One of the first steps of the Passover Seder is to ceremonially wash your hands to show a clean heart before God.  Maybe studying Exodus and Shalom and Chaos last year were some of my cleansing.

Starting the Seder Plate, you take parsley and dip it in the bowl of salt water, then shake the salt water off.  It has various meanings, but one meaning is that the salt water represents the tears of the children of God as a result of their slavery.

I have never felt so enslaved.  And my tears came unbidden for weeks and weeks.

The leader then pulls up three pieces of unleavened bread - matzot - and says:  "This is our bread of affliction which our forefathers ate in the land of Egypt.  All who are hungry, let them come and eat.  All who are needy, let them come and celebrate the Passover with us." 

If hunger and neediness can signify my soul and it's deep need for God to come and meet with me and satisfy my hunger, then I want to come and eat. 

The Seder meal cannot be eaten until the story of Passover is told with great joy and gratefulness.  The sages teach that in each and every generation one should look at the Passover story as if he or she had actually been the one to leave Egypt.  We are to look at it as a time to commemorate our own personal deliverance from the bondage of Pharoah and the gods of Egypt. 

My life has been placed in front of me to where I cannot look away and pretend like I did not - do not - live under Pharoah and his gods in some ways.  Celebrating Passover brings me to a point of realizing the bondage, the chaos, the enslavement to gods that are not my God.

When the three pieces of Matzot bread are lifted up, one broken, and I cannot say "Blessed are thou, oh Lord King of the Universe, who brings forth bread from the earth" -- if I cannot say that and realize Who is feeding me when I live in the land of plenty and am suddenly forced on a diet that I cannot even taste to judge if it is pleasant or awful - if I cannot honestly and purely say who brings forth my "bread", then what good am I in the Kingdom of Heaven?  

***

If I ate the bitters off of the Passover Seder Plate last week, and have experienced the unbidden tears of my torment and bondage to this disease and what it has meant to my life, today I certainly tasted one of the four cups of wine that is to go along with the Seder Plate.

My tears have been turned to hope and joy at seeing a Redeemer that claims me.  A redeemer that takes great joy in showing Himself to me and making me understand on an ever deepening level what He is about.  Who He is.  Why I need Him ever more than I ever thought.

I had the wine of the Holy One fill me with simple joy.  I had the pleasure of tasting chocolate ice cream and glorying in the way it can fill my senses.  I went to a party to celebrate two little lives that I hold dear.  I felt the green cool grass under my feet, and it filled me with calm.  I had a hilarious conversation with a sweet wee one, that still makes me laugh when I think of turning my hair black again. 

If I serve a God that can give me pleasure in the midst of Bitters and enslavement and fill me so deeply with simple pleasures in life that He calls blessings, what more of a mirror can He hold up to me of what He was trying to teach me in Passover?  This year, anyways.  It seems He keeps taking me deeper and deeper and giving me more and more.   

I cannot do justice to the whole idea, nor explain it well.  But it has been a thought process that has taken over my brain these last two years and I never really understood it.  I still don't, but God is in the process of opening it up for me and using it as a word picture, as a teaching tool to allow me a glimpse beyond the curtain.  

And I thought Passover was something I never needed to think about......

I came home with yet two more new drugs today.  I need a pill caddy and schedule to keep them all straight.  My body, in my doctors words is "wearing down".  I am probably going to need more rounds of chemo after my surgery along with radiation.

But, my Redeemer still hands me a cup of joy.  A bowl of pleasure.  A party in the middle of the desert.

In my soul, I am leaving Egypt. 

Bitters, try number two.

Last Wednesday, I posted "Bitters" - then took it down.  It was too bitter, too scared, too wearisome for even me to read back to myself.  So I spared all but forty-six of you that caught it.  

This is try number two. 

*******

Wednesday, May 26, re-do


My blood seems to have an insatiable appetite for self-destruction.  It seems to endlessly be able to find ways to continually get to an all time new low.

My neutrophils were the lowest today ever.

I knew they were going to be low, but I didn't think they were going to be that low.  

So, no chemo treatment this week, and 'they' said, probably not next week either.

If it had not been for my blood transfusion last week, my hemoglobin would have been on the same boat.

I was desperately wanting this white blood cell count to be high enough to get me into chemo soon, so I could ride the "transfusion-high".  But I am back to checking my temperature three times a day, and hoping the bacteria in my body doesn't decide to rise up and cash in on the party.  

Dr. M is an amazing woman.  And I don't know what else to say, but that I need to trust her and she makes it easy.  She explained the fact that even if I did jump out of the study today, I could not get the white blood cell boost injection as a "recovery" tool.  They only like to use it for a "preventive" tool.  And I get that, and we will talk whenever I get my next treatment on which way I want to go.

Which might be right around Christmas from the looks of things.

I'm a little bit despondent at the moment.

We have a ticking clock in our brains, and it starts the surgery count down when Scott was finished with school, and allows him to be there for surgery and recovery without taking any sick days.  The clock ticks off the days I have left in my 'leave of absence' from work. 

It did anyways.  If I had stayed on schedule, right now I would be done with chemo and packing my bag for surgery.  

But it's not happening that way.  My blood is not cooperating even though I have stooped to whispered threats of abuse if it cannot bring itself above it's current antics and misbehavior.  

I know I am not the first cancer patient in this predicament, nor will I be the last, but I don't like it here, sitting in God's waiting room. 

***

And there's more.

Our medical insurance is changing as of July 1st.  Even if it is the best possible of outcomes, it could not happen at a worse time.  I will wait to unload my anxiety on that another day, we just don't have any information yet to know how that is going to affect us.

 ***

Then, this. 

This was the final sucker punch today - the kind of punch that bruises your kidney or breaks a rib taking away your breath - the kind of punch that takes you out of the fight for a bit. 

I didn't see it coming and was slammed with the impact.  I'm in the arena, I should have seen it coming, I should have known it might be part of this round after they rang the bell, but I still didn't think I was open to that type of hit.  

I'm laying on the mat hoping that this eight count gives me something - a little bit of time to recover, to think it out clearer, more prayer time, healing - what is it that I need, oh God?? 

I need to get back into the fight.  Quickly.   

So here's the punch that laid me low - I was told today that five women in the study have already had their surgery.  I was "Study Subject #6".  One dropped out, so that means that one after me has passed me by.  Two had good pathology results. 

The other three had cancer cells.  Scott, aka Mr. Positive, keeps reminding she said one of the three was "microscopic cancer cells".

I am still processing. I don't like those odds.

I know I am nowhere else but in the middle of God's hands.  He keeps showing me that time after time.  No matter how bad or how low or how incredibly hard some days (weeks) are - no matter the pummeling I take with the punches - He keeps showing me that He is my best and only hope.  And He is holding me tight.

There are so many incredible people in my life right now - my doctor, my favorite nurse-study-manager Julie, the nurses there at the center, our friends surrounding us with love and favor and help -- I'm fighting this hard, but I can't help but feel horribly disappointed. 

On the mat trying to catch my breath. 

Today, I'm just kind of more identifying with Elijah running to his hiding place, than Elijah calling down fire from heaven. 

After we got home, I made myself up some fresh cooked cabbage.

***

I think I have made it through the whole audio Bible at least once the past couple of months, and tonight I plan to go back and listen some more.  I started out this whole thing with the knowledge that God is my "Hiding Place".  The place I run to when nothing else in this world makes sense.  The place I am covered and protected.  The place I can talk and not hold back, the place I can unload my burdens, and the place where I cast out my fear. 

There are a couple of references to this in the Scripture - You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.  Psalm 32:7.  

I also love this one - He, My dove in the clefts of the rock, in the hiding places on the mountainside, show me your face, let me hear your voice; for your voice is sweet, and your face is lovely.  Song of Songs 2:14

The song was made for the movie about the life of Corrie ten Boom.  I have loved it for years as it tells my soul where to go in times of trouble - to my Hiding Place. 

I could not post this past week because I needed time there to sit and think and pray and hope and believe and know that God is still walking with me on this journey. 

I am praying for wisdom in choosing the right medical path.

I am needing His "songs of deliverance"   But more than that, I am praying for His protection and listening to His voice that is sweet to my ear and life to my soul. 

I learned during passover that the Bitters are on the plate.  I need to eat them and savor them and remember the God that delivers. 

Tidbits

My hair is starting to grow back in.......  It is still shorter and more scant than a new recruit at the nearest Army base, but it seems to be growing.   My nurse-study-manager Julie commented on that fact two weeks ago and I told her worriedly - and a bit accusingly I might add - that it was because they were not giving me enough chemo.  She laughed and told me to talk to her again in a few days and see if I still felt that same way.

I didn't.

I told Scott the one advantage of chemo - and may I stress only one - was not having to worry about shaving and the occasional odd facial hair.  I mean my skin has been baby smooth going on a long time now.  Dry, but baby smooth.  Now, I'm guessing with this new growth, I'm gonna have to shave my legs at least once this summer......

Life takes odd twists and turns.  If someone would have told me five years ago that one of the things that I would share with my son was his hair clippers, I would have laughed myself silly.  But he very politely loaned me his carefully packaged clippers last month when I had some crazy growth during my "chemo-vacay" so I could clean up the erratic, weird peach-fuzz-stuff that was growing.

I'm not very good at being a barber.

But it looks like I might need them again if this last blast of carbo doesn't knock it all out again.

*******

My stomach and gastric system are starting a long term revolt in earnest.  I keep telling it "four more weeks".  Four more chemos.  Hang on and don't bail on me now.  Please! 

It's like talking to a screaming, thrashing two year old - it won't listen.

'They' suspect ulcers along my digestive track and with the way my stomach and gut feel some days, I am in agreement.  I changed up some drugs and started Zantac last week to not only help with the symptoms, but to help heal any ulcers lurking about.

After my blood transfusion.

I am the crazy lady that reads all the literature that comes along with every drug stacked in our home pharmacy now, and one of Zantac's "'common side effects" is "abnormally low platelet counts".  Add to that, "abnormal blood cell count".

 ?????????

Oh, and "baldness".

I am not kidding.   

I think nurse-manager-Julie would rather I didn't read those. 

It does lead one to wonder.......

*******

There are some relishing stretches of time now where I feel better.  And it's killing me -- all I want during those times are some nice leafy green fresh vegetables.   A salad from Panera Bread.   I told Scott last week when he asked me my grocery list "I just want a fresh carrot.  One fresh carrot".

I see leafy green lettuces in the Amish lady's 3-acre garden in front of Cinnamon Lake and I want Scott to stop the car and buy some and eat it immediately.  

My latest craving has been cabbage.  Fresh, plain leaves, cabbage.

I've stayed on my "low bacteria diet" that is all things canned, frozen or baked to nothingness, going on five months now.  It wasn't difficult when my appetite was foul and all things food smelled like the local sewage plant.

Now, there are stretches of craving fresh.  A fresh watermelon.  A fresh tomato.  A cucumber.  And again, cabbage.

So I am looking online for diet ideas for chemo-ulcers and the first thing that pops up is "fresh cabbage juice".  It's alkaline rather than an acid and is supposed to soothe the stomach. 

Four more weeks.  Four more weeks.  Four more weeks. 

A Late Anniversary Tribute

There is a man in my life that I pray God blesses every day.  I pray that because that man tries to the very best of his human ability to be my personal Jesus here on earth. 

He loves me like no other.  He forgives me like no other.  He upholds me and comforts me.  He has cared for me like a benevolent, kind and caring king would care for his loved one.  He has done everything he humanly can to make sure that I am given the best chance at recovery.

He cleans for me.  Cooks for me.  Does the dishes and laundry for me.  And when he comes home and I feel so horribly guilty because I have not been able to do the things that I have enjoyed doing over the years making a house a home for us, he says he doesn't care, that it's not important.   

We've worked through some hard times.  There have been some hard anvil strikes while forging this bond.  My loonines and his looniness have been smoothed out to make us happily loony together.

He kisses me and hugs me and loves on me when I am no longer his sixteen year old image walking around in my high school job in a mini skirt and knee high boots at the Cactus Steak House.  He would come in to pick me up after football practice and the manager would give him a free steak and sit down and talk to him about all things sports, and I could feel his eyes on me the whole time I was "closing".

He might have been enjoying a free steak dinner with my manager, but every time I looked at him, he was looking beyond him, looking at me.

I am no longer twenty-one when my body was *beautified* by another pregnancy.  I was sick and lost weight and pushed myself mostly in a survival-mode-fog for nine months.  He loved my overly huge belly and took care of me sacredly when I wasn't feeling so good that last time around.

I am no longer thirty-five which I thought was my *best-looking* year as a woman - not speaking in terms of vanity, but that's when I finally started to feel at home in my own skin, and it showed, and he loved it.

I am no longer any of that, yet he looks at me like I am.

***

Last Wednesday night on the way home we listened to an "oldies" station out of Columbus.  They played the James Taylor song he sang along with when we were in his car together driving to school and he would squeeze my hand because it was corny, but oh so how he felt.

"Whenever I see your smiling face, it turns me inside out, because I love you".......  He even does the doody-doot-doots" and all.  

They played Boston's "More Than a Feeling" and Elton John's  "Your Song".  He and I were not so much into "candy-rock" as we called it then, but these songs were on the radio all the time and we knew them by heart and that music touched something deep inside us when together.

Last Wednesday night, he held my hand again as we drove home, and kissed it, and said no matter what, he still loved me.  More than ever.

I had not cried all that day - not when they once again showed me bad blood work results, not when they once again shook their heads over my weak bone marrow, not when they once again started the blood transfusion - I didn't cry over any of that.  But when he hummed along to Eric Clapton's "You Are Wonderful, Tonight" - and again kissed my hand while driving - when he did that, I cried, because I know I'm not but I know that is what he sees me as. 

I can't even put two good blood cells together, and he says he doesn't care.  I am blimped by steroids some and have no hair, and soon I will be in a surgery taking away what society says makes me an attractive woman and he says all he wants is for me to come out alive.

It's crushing him, and he doesn't care.  All he wants is what is best for me.  And he lives it every day and he prays it every day and he gives it every day.

Who can be more Jesus here on earth than that to me?  If I have no other blessing or prosperity or health or long dreamed of vacations or love - I have this.

***

He begs me to come out and sit with him each evening so we can engage in "garden-therapy" and watch the sun go down.  We talk.  And sit silently and listen to the birds.  And swat mosquitoes.  But it is far better than the faraway Caribbean beach.  It is better than a weekend on a cruise.  It is better than any vacation we have not been able to take.  It is better than any bathroom or kitchen that is not updated.  It is better than those exquisite restaurant meals we cannot now partake in for hours on end. 

It is our island of peaceful togetherness, our island of time that we didn't have together for years because of other commitments - it is our island of Shalom.  And we have treasured it the last couple of years.

And now more than ever. 

I don't know how I ever got a man like this.  I don't know how he keeps on.  But he has.

And he can sing along with songs of love to me all he wants in this desert .  Each day he is creating again and again, week after week, building and rebuilding because it is so easily shattered by words of people wearing bright colored scrubs - but he keeps building an oasis, a spot in the desert that is kind and nourishing and flowing and safe - for us.

He is buying me a solar light once a week to put into our garden to check the time.  To remind us of what we have overcome each week.  To remind us of what we need to do most the next week  - concentrate on some beautiful blooms, buzzing bees and late evening sunlight.

And the gift of each other.  

We talk about God and His Shalom out there.  We talk about our kids.  We laugh over our grandkids antics.  We talk about us.  We talk about the peas.  He tells me what he planted and what new recipe he is going to try for all the produce that will be popping up soon.

Because my world has shrunk considerably, he tells me everyone he saw that day, who he talked to, what they said - because he knows I am not able to "intermingle" so well now, so I hang on others conversations. 

We don't talk about cancer so much out there except for him to ask me how I am doing every fifteen minutes.

It's more of a sacred spot that he works at to give us a spot to "be" now.  I can't drink the coffee we used to relish out there every Saturday morning anymore.  I cannot sip the glass of wine with him in the evening.

I just drink him in and smile while he tells me about all of the birds and plants again. 

When the faithful are called to receive their reward, I know his will be something along the lines of "You gave your wife an intimate portrait of Jesus while on earth".  

Which might be the fulfillment of one of the highest commands given to husbands. 

And makes me a blessed woman. 

Rough Wednesdays

I made it into chemo today by the skin of my teeth.

The Grans Absolute line has to be 1,000 - mine was exactly 1,000.

My white blood cells were walking the tight rope over Niagara Falls and almost knocked me out.  'They' can't give me anything to make my white blood cells behave since I am still in the study, so that was a slide into second base that everyone held their breath while waiting for the umpire to yell "SAFE".  They did a few replays to make sure it was a good call. 

But, the worst showing today blood-wise, was my hemoglobin.  It had a rather dramatic drop.

Think dropping over Niagara Falls and hitting the rocks below kind of drop.....



They give you an extra bracelet for that.  And a two bag blood transfusion lasting over four hours.......

My red blood cells should be repairing as I type.  With someone else's blood.  Because my bone marrow is just hanging out with the naughty, rebellious teenagers smoking and drinking and throwing tomatoes behind the barn.

Wasting away. 

BUT -- BUT -- they  still let me get the chemo with all of that.  We left home this morning at 7:15am and got home around 8:20pm.  

It was a long day.

I was thinking this past week that my blood might be tanking a little bit, but was also *feeling better* with the lesser dose of chemo.  Even I - even I, was surprised when I saw the black and white blood work results this morning.

They were pretty lame.

The nurses kept coming back in wanting to know my fatigue level and I was just kind of thinking I had been a little lazy this past week - I slept in until 10:30 yesterday morning, then laid down and listened to most of Numbers in the afternoon.

But Monday evening, Chloe and Zoe and Scotty had come down and helped Scott plant some garden, we had been outside, I even pulled a few weeds and was tired, but it was a good tired.

Last weekend was carbo weekend, and I lived through it rather - well - quite well.  I kept pinching myself thinking even though I was tired, I could still move;  my internal organs were not blasting themselves all over the place; my head and brain did not threaten to spontaneously-combust.  It wasn't the best week ever, but not the worst by a long shot comparatively speaking.

Looking back, a big clue this past week for my poor blood showing, might have been the fact that it was the first time that I had been given  pre-med steroids, and came home and fell asleep by 10pm last Wednesday.  That's never happened before when "juicing".   Never.  The earliest I can go to sleep with IV steroids flowing through my blood stream is 3:30am.  Usually it's 5am.  But never 10pm. 

Sherlock Holmes putting the clues together in Karen's brain has taken a vacation. 

I know Julie tried to prepare me for next week by asking me if I wanted to try to get my blood work done the day before again...... Even though my hemoglobin should come up dramatically this next week if I had a good donor, she said my white blood cells would still be a bit "iffy". 

Four more treatments.  Four more treatments.  Four more treatments.

And my bone marrow is AWOL.  

***

I woke up from my sweet weekly IV Benadryl induced nap and my throat was parched dry.  Like, it's never been that dry before.  Like I was walking through a desert dry and had been swallowing-sand-dry.

Actually, I think Moses, and the Hebrews and their long walk after leaving Egypt recorded in Numbers yesterday stayed with me today and I was dreaming about it all.  But to wake up and be that parched was a little alarming.

The nurse said it was the Benadryl.   And also, they have no clue how much water I really drink, so I am always a little dehydrated while there because I just can't tank up enough with their mini 8oz bottles of water.  I had six of theirs, then Scott went down and bought me a 16oz bottle, but that is kind of just my starting point at the daily watering hole.

But after spending a good amount of time yesterday listening to the Hebrew nation time and time and time again complain about Moses, complain about God, being afraid He would not continue to do what He had done miraculously time after time in front of their very eyes - I listened to that and kept thinking, and praying - "God don't let that be me".

Because it's kind of annoying after a while to listen to someone who had been shown a lot of miracles and should have built up a lot of trust because they had seen the awesomeness of God's finger time after time - after all of that it's kind of annoying to hear them - well there's no nice way to say this - *whine*.

Whether it's the Hebrews or Karen.  

Chapter after chapter, they continually threw down the gains and blessings they had been given like children with broken toys on Christmas day - and *complained*.  Ugh. 

I had a chance to try that suit on today, and I was glad I had taken the time yesterday to think that all over.  I don't like the situation I'm in, and I know it doesn't look good on some levels.  I'm frustrated at my body's response.  I'm upset with my bone marrow.  I do everything I am supposed to do, and it doesn't seem to help.

And because of my blood counts I am facing one. more. week. of. isolation. and. weariness.   

But on the other hand, God has shown me *wings* in a lonely desolate exam room my first day at the James Cancer Center.  He put an angel in my path when I was doubting my doctor some, and not wanting to lean on friends as much as I needed to - and she responded to all that I was dealing with that week and reminded me "it was going to be ok".

He has given me awesome nurses that continue to go the extra mile to help me medically.  Time after time.  

I have holy friends that have listened to me weep and prop me up - time after time.

There are two Godly men that are committed to a long drive every couple of weeks to pray over us for healing.   

He has shown us great and mighty things in a lot of people doing a Benefit for me - and heaven help me if I ever forget what He prompted a lot of people to do in creating community and Shalom for some storm-weary folks on this journey of life we are walking.

It is so awesome that I am still dumbfounded every time I think on it. 

God has given me manna in the desert, and I hope I never tell Him it's not good enough and I want meat.   God has given me water from a rock when it looked like I might perish from thirst.  God has given me His very words to think over and hear time and time again.

And use as a lesson for my life journey. 

He has used people around us to create Shalom and trust and faith and belief, and helped us hold on when the storm and darkness threatened to overwhelm us.

They have created a 'shade' and 'guarded' us and 'kept' us.  

He has not told me how this is all going to work out.  But He is leading with His mighty hand - the Jews say He can do all of that - Egypt and the Desert and/or Karen and the Desert - with the little finger of His hand.   That's why some of them lift their little finger when repeating the "Shema" or "Schma!"twice a day - upon rising and upon lying down.  It's the first Scripture they teach to their children. 

Shema

Hear, Israel, the Lord is our God, the Lord is One. (the Lord alone).

Blessed be the Name of His glorious kingdom for ever and ever.

And you shall love the Lord your God with all your heart and with all your soul and with all your might.

And I pray that I do just that.  And remember His mighty deeds whether past or present or future.  And take a tip from those ancient Hebrews and have a little faith and trust and belief that my God is with me - wherever my journey ends.  Or begins.  Or walks. 






This is a "PS" - look what RVL posted today.....


http://followtherabbi.com/site/shema

 

Chemo-Brain

I am struggling to string together more "good hours".  Since my chemo blast has been lowered to a more tolerable level - or better said - with three months of "shock and awe" commenced and over, I now have boots on the ground.  There are a lot of land mines and road side bombs now, but not the constancy of getting chemo, finding ways to reduce the pain and recovering from chemo, then going right back in for more.

I remember March 15th, asking Scott if he had taken in the February 1st house payment.  He kind of looked at me, laughed and pointed out the date.  I lost over three months that are just a blur.   

I do experience some "breathable" moments most days now.  

I have practiced some, tried sitting at my desk for an hour or more at a time, and then am trying to do some mundane household chores - although the kitchen still makes me weak in the knees and reminds my gag reflex that it is alive.  Sometimes, I can string up to three hours together - chatting, working some things in slow motion - then all of a sudden someone pulls a plug and I am groping for a bed.  But three hours some days, are three hours.

I hate to say it out-loud because my body listens to words like these oh so closely, but my bone marrow is wimpy and needs much help repairing.  

I thought I was doing pretty well, then went out for my mile walk yesterday in my fleece hat, fleece jacket - because I am somewhat cold most of the time these days - and I stopped in at my neighbors who always have a super-stellar garage sale and I saw her out setting up for the *Cinnamon-Lake-garage-sales* here this weekend at Cinnamon Lake, and asked her about an item on her porch.

The two times a year garage sales here are pretty much the highlight of the year for me when it comes to all things sales.  It seems any little bit of Scotch ancestry down deep bubbles up and I am in looking-for-a-deal-stealth-mode.

I always hope that Scott has something to do those days, as he can lose interest alarmingly fast when looking at other people's junk.  Downright fast.  Like, "we stopped at three places, let's head down to the lodge for hotdogs"...... sigh.

I still remind him of the old wash tubs that were sitting out in someone's yard like fifteen years ago, that I didn't get - because we "took a break for his stomach and his sanity".....

I like meeting the neighbors, finding things the grandkids will like, and just sorting and sifting - it's in my brain mechanism.  I love to find that one thing that I will love for the next ten years - all for $3. 

But anyway, while walking yesterday and stopping at Millie's wonderful walmart-of-a-garage-sale setup, I thought I was doing pretty well - and she took one look at me and asked me if I needed a ride home.   

We live two-tenths of a mile down the street.  Maybe it was the fleece jacket when everyone else was wearing t-shirts.  I don't know. Scott and I have noticed that instead of getting red-cheeked and flushed when walking, I now get rather pasty and drained looking, so who knows - she might have thought I was four steps away from death's grip and was wanting to save me from the shallow ditches along the way. 

I still have some shortness of breath when walking, and depending on the day, have a little "brain-drift" which puts me places on the road I should not be, and some other issues as well, but doggonit - yesterday I was feeling better. 

***

In this battle, the sprint to the end of this chemo treatment has commenced and I am praying that my blood cells hold up enough to allow me to get through the rest of the chemo without interruption.  There is a little bit more recovery time now in between the weekly chemos, so that helps.

But I lay awake at night sometimes, and just talk to my bone marrow - begging it to want to fight.  If it gives up too soon, I'm out for a week.

They don't know why my bone marrow is wimpy.  They don't know why it doesn't gird itself up for the fight.  It doesn't seem to remember the battle manual.  Or maybe it has forgotten that the "Art of Cellular War" even existed.  

'They' say "past-exposure".  'They' say over the years, something has knocked that down.  'They' say it's not important to know why now, it's important to just do everything I can to help it and fight.  

I agree.  My bone marrow, not so much.

And as Scott pointed out this week, the only water I can stand to drink the last five months because of the taste, comes to our house in a plastic bottle with the words "Pure Life" plastered across its plastic label.  I could still be giving my bone marrow reason to want to just quit.......  Once you start going down that road, it gets rather messy - it's littered with things that could go "boom" and knock out your bone marrow rebuilding ability. 

Apparently, there could be a case made for almost anything I touch, taste, breathe, experience.  I am just praying that whatever that is/was, that God can still start a miracle of repair in there.  Deep inside my bones.  Just renew and repair. 

***

All that aside, my biggest fear of chemo, other than surviving some of its Hiroshima blasts, has been chemo-brain.  My brain feels so small now.  I feel like a four year old child searching for the correct words most days.  I can cover it up for a bit, but the cover-up frays quickly and doesn't last long.

I read a study online that was connected to a trusted site, and it stated that women had been tested for cognitive ability 10 - 15 years down the road after chemo, and there was notable difference.

I believe that.  

I have always liked having a decent IQ.  Don't get me wrong - I'm not talking any genius here, although I know some people who are - but I have been a lifelong student of *Odd and Crazy* bits of information.

When Scotty brought home his Army manuals, I read them.  Studied them.  When watching army maneuvers on tv now in a movie or late night show - I know sometimes that it isn't quite correct - I know that they sometimes "don't have the manual".

I know if three soldiers are surrounded by "unfriendlies" - which one you shoot first.  

But I was so impressed with their planning and how each look, each hand sign, each detail meant something.  And it usually meant something that could end up being life or death.  They lived those details.  It was pretty awe-inspiring.

When my kids brought home their college text books, I read through a lot of them.  I learned about sexual deviants before CSI told everyone on TV.  I read all about human behavior.  I read about society and it's response - both proper and improper to those that needed help.

I remember my foray into "the classics" and when I discovered William Faulkner, I was down right scared.  Scared that he could tap human behavior that easily, that in-depth, that well.  Scared that he was painting a picture that most of us want to pretend is non-existent in our societies.  Scared that he moved me enough out of living on the surface to dream about deeper things.  Not that my personality needs so much as a shove to do that, but he did it, deeper. 

Here are some of my favorite quotes of his: 

“Memory believes before knowing remembers. Believes longer than recollects, longer than knowing even wonders.”

“The young man or woman writing today has forgotten the problems of the human heart in conflict with itself which alone can make good writing because only that is worth writing about, worth the agony and the sweat.”

“I feel like a wet seed wild in the hot blind earth.”

“Given the choice between the experience of pain and nothing, I would choose pain”

Over a year ago, if prompted, I might have been able to recite some of those things that I had placed into my brain over the years.  I had learned them, stirred them over and over, and remembered bits of it all here and there to "furnish" my life.  

It's all gone now.  

Thank God for google.  

***

I'm not a singer, but for some reason my brain loves music.  Now more than ever, I am a believer in the fact that what you put into a child's brain when young is what they are stuck with for life.  I love the old hymns, because as a child, I memorized them easily and could sing them back easily when walking or sewing or driving - they were just there.  

My brother sent me a print out of the hymn "My Jesus I Love Thee" and it was large enough print that I taped it to my tread mill and sing it in my mind while walking.  

It makes me bereft to realize that I had memorized that five years ago to sing while rocking my grandbabies.  It's mostly gone.  I have to read it every day on the treadmill to get it back a little.  

Someone posted this on Facebook today - and I love it.  

Maybe because it includes the Irish countryside, and reminds me of all the tears and fighting and plain old pluck my ancestors had to just keep it "Christ Alone" - they fought for what they thought at that time was right to stand on, and tried to keep the Bible unstained in their lifetimes as much as they knew to do - and it's admirable what they sometimes gave up or sometimes did to hold tight to that ideal.  

But my brain responds to this, wants this, desires this.  It comforted me when young learning it in a church full of people that I knew, or when sang by my mother when driving - but my brain seems to connect to the "audio" part of it more than ever, and what I learned "audio" as a child is easy to dwell on now.  

It's all interesting and bit scary.  But if it's an audio Bible I need and listen to, or audio lessons from an awesome Rabbi, or songs like this - it is doing repair and renewal to an organ that concerns me most in this battle.  

And trust me, I am being a bit more careful about what I am pouring into that part of my brain this time around.  Maybe some day I will be singing this in a nursing home in my nineties.   

And reciting parts of Faulkner maybe, but more likely, counting and repeating the gods of Egypt that God *threw down* in Exodus if I'm lucky.   





 

What we didn't talk about for two days....

My 'in-depth' day on Wednesday at the James Cancer Center / Stephanie Speilman Center was pretty rough.   

It was the beginning day of my fifth cycle of chemo.  Only one more cycle to go after this.  One more carbo hurt.

It was also the last day of the tests for the trial study part of my experimental drug.  (I think, there are always lots of surprises.)  I started at 7:45am, and we left there at 5:30 after a day full of tests and appointments and chemo.

I've had better Wednesdays.

The first test was a comparative mammogram.  IF you ever, ever wonder about the difference between a digital mammogram and the usual, wonder no more.  I saw the digital, and it is like looking at an x-ray versus a CAT scan - it's that different.

But she took two scans, showed them to me, and then instructed me to wait in the all female waiting room while the "doctors" looked them over.  They can push a button and voila! the doctors in three parts of the building immediately see the results.

They are kind of techie-amazing that way there.

In that large waiting room, it was kind of obvious that they do a lot of the mammograms going on in that city.  It was also obvious that I was the only one sitting there with no hair and a hat on.  I was everyone's fear.  It was a little lonely.

Then she called me in for two more.  Then I sat in the waiting room alone again, and she called me in to do my other side "for a better comparative".  Then called me back for another view.  I don't bite my nails, but this was beginning to not feel so positive.

Then she called me back in for "a few more views" and quit showing me the results. Then once more.

I counted five times being called back in.

There was something growing deep in the pit of stomach, and it mostly goes by the name "fear".  Not the "hey, surprise!" kind of fear, but the kind of fear that I have to work hard and pray hard to push out of my mind for a while whenever I hear the word "metastatic".

But it was bold face staring at me now, and I couldn't push it down, I couldn't talk it down, I couldn't think clinically and move that emotion out of the way.

Then I went to ultrasound.

I know enough medically to be dangerous.  I have seen a lot of x-rays.  I have seen a lot of surgeries.  I have seen some surprises and some disappointments when it comes to treatments.

I watched the ultrasound and it looked even worse.  The lumps still showed up the same size, same place two months later.   

On March 7th, my last ultrasound, the lumps had been visibly and technologically measured to be half what they had been the end of December.  We all celebrated.  It was great news.  Like, "you might live" great news.  

So I think I was kind of hoping and maybe somewhat expecting some more of the same.  And I slammed hard into the wall of knowledge that to my eye, they had not changed, and that was what the report said later, too.

And now that my chemo brain is not under as much duress as it had been previously, I saw something I had totally missed on my last ultrasound March 7th -- there was another lump in there.  It had grown until I probably started my chemo blasts in January - so from the end of December until it was caught on film two and a half months later it had snuck in there unawares to me.

And I still hadn't seen it then in March.  That's something that was kind of noticable, but I had missed it in March when it was right there on the screen in front of me.  Only after I saw the three screens side by side Wednesday showing all of my ultrasounds did it finally hit me what I was seeing.

I don't remember much of February or March at all, anyways, I guess. 

***

Scott has been beside me, literally, for much of this.  I call him "Mr. Positive", because he is almost naively positive, and he is able to turn a blind eye to what we don't want to see sometimes and encourage me to do the same.  But he wasn't beside me for this.

My eyes saw the ultrasound, and my body reacted and started to tremble.  Then it started to shake.  The sonagrapher was very quiet.  I started to cry very quietly - just one tear kept popping out after another.  I couldn't stop them.  She offered me a warm blanket for my shaking, then saw I was crying and offered me a tissue.

There wasn't anything else she could say.

I listen to scripture online and it plays while I go to sleep.  I think God woke me up one night to hear one verse that I had taught children in Sunday school years ago - "perfect love casts out fear".  I have repeated it over and over many times.  I kept repeating that scripture to myself in that room, and the fear would not stop.

But a song popped into my mind.  I thought I knew some of the songs that my dear friend Diane had sang Friday night and had googled it, then asked her, and in that room it came back in broken parts - because I don't know it all that well - but it was perfect broken parts.

"Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near"

It helped.  But the tears just kept popping out one by one.  

So I walk out through the waiting room with someone leading me to another waiting room, and they called Scott from the waiting room he was in because they have different levels of waiting rooms there - all female with most wearing white robes, then a somewhat *upset* co-ed room with white robes and interspersed males, and then the usual co-ed which he had been left waiting in.  He walked in and just said "hey there, Babe" like he has a thousand times, and held my hand.

And I stopped crying then, but I knew he had not seen what I had just seen, and it rattled me really deep inside.

***

We met next with my surgeon.  

My surgeon was not concerned.  He said sometimes ultrasounds are not reliable in these cases and that it was nothing to worry about.  He said I would not know for sure if it was still the tumor until after my surgery.  He said I would not know then, until after my pathology if there were still cancer cells.

But he stated again, not to think too much on the ultrasound.

And the mammogram.

He said I still needed to finish up my chemo and he even laughed when I said "yeah, I was not wanting to miss those last two carbo hits".  

I only half believed him.  I had seen it and I didn't necessarily believe both types of test could show up that much tumor and not be reliable....

Mr. Positive on the other hand, believed.

***

Bits of the song kept playing on my mind.

"Whom then shall I fear?"

***

Heidi had texted Scott saying she was coming over to meet my doctor and probably, I'm guessing, because she of all people knows what it is like to sit in waiting rooms like that.  She didn't know any of what had just shown up on the tests, but she wanted to be there.  It was a good surprise.

She knows too well what it was like to sit and wait and talk to medical personnel until you cannot think anymore.  

So we all waited together, I told her, and she had a piece of knowledge that might have been delivered straight from an angel just for that specific moment in time --  but she said that she was told -- and I am always careful when people start conversations like that - but that she had been told that sometimes tumors leave "shadows".  She said her surgeon had told her to wait to get an MRI and CAT scan done for five years because the tumors leave space when they are gone.

I chewed on that for a while.

***

Then we went in for the doctors appointments and talked to my study-nurse-manager-Julie.  She said the same thing that the surgeon had said, only much more lovingly and emphatically - that sometimes it's all gone and it still just shows up on the ultrasound.  I moved an inch closer to believing them.

***

I saw one of my favorite oncologists, Dr. Bauer, for the last time.  Dr. Mrowzik's "fellow" is leaving this month to start his career in Nashville.  If you live within 400 miles of there and need an excellent oncologist, call me and we will track him down.

But he said the same thing.

He also took the time to talk with Heidi about the genetics with this whole cancer and I am sure relieved some of her fears.  Fears like "am I next?"  He told her that she was now living in a new world of having her closest female relative being alarm-number-one breast-cancer-wise, but on the other hand, told her that this was not the usual genetic type of cancer.

He laughed when I asked if I was still receiving enough chemo with all of the reductions of late.  He wanted to know if I thought they would just give me chemo to make me endure the side effects without any efficacy???

It was funny at the time, anyways.

***

"Oh no, You never let go
In every high and every low"

***

Then Dr. Mrowzik came in.  I wasn't supposed to see her, but she still came in, concerned for me, because it seems like word spreads like wildfire around that place.  They get word around faster than the hundreds of gaggles of geese that hang out at Cinnamon Lake. 

She told me not to worry and gave me the words that I finally hung my hat on that day.  She said it could be, could be, necrotic tissue in there.  That it is either mostly gone or all gone and my body may not have absorbed the dead tissue yet.

That, finally made sense to me.  

Again, she said, like my surgeon, that I would not know for sure until surgery.  But she was betting on the fact that it was not what it appeared on screen.  

So, Mr. Positive and I walked down to chemo with much lighter hearts.  After all of that, meeting up with my old foe-of-a-friend "carbo" didn't even seem all that bad.

"Yes, I can see a light that is coming for the heart that holds on"

I still don't know how it is all going to work out, but am so thankful for words in song that help me hold on.   

*******

I wish I had Diane's version, but this is next best.   If you know Diane, it almost sounds like the her talking. 

You Never Let Go

http://youtu.be/b61wsBdqrKM

   
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

 

What Hath God Wrought? (in the dessert)

I cannot stop saying it - I have seen God this this past week, and I am barely able to process it or move beyond.

Psalm 121:5-6

The Lord watches over you-
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.


There have been times where I have not so much believed those verses in the core of my being.  We have encountered some pretty crazy things and endured other people's fallout from sin maybe too much in our lifetime.  One pastor told us that we had to be experiencing the "year of Jubilee" that coming year because we had "been in bondage" the past seven years.

I remember agreeing at that time, and just thinking and thanking God that "He had protected our health at least"........  That was in the mid 90's.  Scott's back was injured, we had the requisite broken bones with kids, and such, but in my mind the next hammer to fall if you read the book of Job, was health.  And we had seemed to escape that.  

In fact, I keep looking over my shoulder a lot, and it's all due to past experiences.  My personality that God so richly *blessed* me with, looks at those experiences and tastes them and processes them and mulls them over looking at them from all possible sides.  I have to delve in and study the "whys and whynots".  I read the Old Testament a lot, and a lot of commentaries with it, because the experiences of the ancients were sometimes relative to what I was going through - how sin can hurt.  How losing everything can cost more than you ever imagined.  How little this world sometimes cares when you are being squeezed to the point of breathlessness.

How hard it is to walk in the dessert. 

And those experiences have honed me, but they have also left me thinking sometimes I would not totally "experience God's full awesome goodness and Kingdom" until I got to heaven.

Au contraire, dear friends. (I did take two years of high school French and remember three phrases) 

*******

I struggled much with whether I could sneak into the benefit, thank the workers, look about, and then - leave.  Get my sorry low blood counts in the door, then out the door and back to bed.  I drugged up a little.  Rested a lot that day.  It was day three of my chemo that week, and I didn't want to get nauseous at inopportune times.

That last pill is always the hammer. 

We tried to leave early enough so we would not encounter a lot of people there - but then Scott thought there might be less exposure after we were sure the kids had all left the school.

I struggled over the dilemma of wearing a wig for the first time or wearing a hat.  I had the wig because I thought I was going to be working all along, but alas, it has sat on a shelf for several months, unused.

I've not been anywhere to use it.

Scott said he had seen me without any hair for so long, that it looked more natural to him for me to go with the hat.  Hmmm... I waited until Heidi got here, and we leaned towards wig - as it is not such a huge leap of "look" from when most people saw me last December.

My friend Mara had given me an eyebrow kit.  I practiced once, as it had been a long week.  It was amazing how a little bit of color where my eyebrows had been changed my face.

It's been a while here folks. 

Heidi had given me an upgraded eyelash kit.  The Walmart one I had bought didn't turn out so well.

Tanya, the girl helping us clean every other week, is all things "beauty" and she gave me tips on putting on eyelashes, then she said sizing up my shaky hands "you know, you could just wear an eyeliner and that might be enough".  I readily agreed.

It has been so long since I put on makeup in earnest, with hair fringing my face, that I'm not sure Scott recognized me.

*******

We walked into the school and I was *dumbfounded*.

It was one big blur of pink.  Women with pink t-shirts on, and men with pink t-shirts on.  I know some men struggle with that, and I marveled.  

There was pink everywhere and on everyone. 

There were so many people there already.  We chatted a little with different folks then Heidi and Kristi slipped me into the stage door trying to protect my wimpy blood cells - and also protect my brain - it was rather apparent to any I talked to that I would not be passing any drug tests this side of home plate.  

But, I was overwhelmed squared, cubed and beyond.

I wasn't the only one amazed.  People were astounded that there were enough people that could 'pull' together to 'pull' this off.  It was simply miraculous.

The words that keep walking around in my brain are "What hath God wrought?"   

More than the money, more than the finances of the evening, there was a feeling that God was being reflected.  There was a feeling that God was being given the glory for a lot of people's hard work.  There was a feeling that a large of group of people had come together to make sure that I realized that God was holding me tight in His love.  In their love.

There was a lot of "God's shade" going on there.  

There was such a *community* of people there, that I was humbled beyond words.  Beyond feeling for these past days.  Beyond knowing what to do.  

*******

I started a study in earnest last year on the Bible from viewpoints I had not considered before.  It was basically taking scripture and expounding on what the Hebrew side was.  I had so many questions answered that I had wondered about for years while reading through the whole text.  The more I explored, the more fascinated I became - the Jews know their text.   They have thought about it, studied it, expounded on it and argued proofs over "the very Words of God" for years and years and eons and eons.

Genesis, seen through their eyes is awe inspiring.  I had long felt for Joseph - suffering while others seemed to be tooling along in life just fine.  But I never understood the blessings.  Why Jacob switched up his sons blessings.

The book of Exodus suddenly had a whole new light, a whole different perspective, a whole life changing teaching.  I had always loved Moses faithfulness while in the wilderness for forty years, but now understood the gods of Egypt that he stood up to and understood the wilderness on a whole new level.

It was a desert.  

One concept that showed up several times, was the idea of God wanting us to live in "community".  I was not such a big fan of that idea.

So as I was learning about community - I asked God to show me how.  In my mind and what showed up on my *spiritual gifts tests* was that He had somewhat appointed me the job of "door-keeper" of sin at times -- I had seen too many stomped on and bruised almost beyond healing - how do you go about this community idea and also keep the gates of Hell closed and take care of sin in the midst of living *community*?

It's kind of clear in the Bible, but mostly difficult to enact it appears.

God has taken a year to push aside everything I have previously learned, and told me to "just watch".  I'm not saying God gave me cancer to "show me".  I am saying that in the midst of cancer, I have had a one-on-One tutorial on what God wanted me to know.

Probably because I asked and all.....

But if the first few decades of my walk with Him - my journey with Him - was all about the effects of sin on people, how to deal with it, how God feels about it, how the church should react to it - and I learned that in a harsh tutorial that I wish I never had to learn - but if my first decades of walking with God were all about that, then this decade might be the one that I learn the flip side of the coin.

Probably because my brain is not big enough to take it all in at once.

Or more than likely, God teaches us the same way we teach our children - ABC's come first, then they learn the sounds, then they learn to read.  Or you take English 101, then 102, etc.  It's a building process.

And maybe I would not appreciate what I am seeing first hand now, if I had not learned the horrors of sin that I had to learn previously.

*******

But I am learning *community* - God's way.  Others keep commenting on the benefit, and I keep commenting that it was like nothing I have ever seen in my life.   The Jews see the Kingdom of God as being something that is real, that we are supposed to be living right now.  It's here on earth and we are the ones that are in it.

I always thought that was future, maybe.

Maybe I was mis-informed, or never paid attention at that point of the sermon, or just plain missed it - but I always thought that was something "coming" - not here and now.  

Jim and Lee Ann would not tell me hardly anything about the benefit before hand.  (They know me well, it appears....)  But the stories are leaking out and I am learning that what happened was maybe the most representative of the Kingdom of God that I have ever seen, or touched, or tasted, or turned over a million times in my mind, or as I am doing now even more furiously - studied.  At least as far as my chemo-brain lets loose with rationed brain cells that is.  

And I am so glad I got to see some of it first hand.  I almost missed that moment.  (and if you wonder I had a sore throat last night and was doing some re-thinking myself - but it's all good now, smile.  Scott said if anything was starting, all the chemo I got yesterday killed it.)

But I will hold that sight forever in my mind as a standard for the Kingdom of God working. 

It is all so hugely humbling, but we have not even thought so much on the money part yet - that is so awesome - but not what we are taking away from this. 

We are taking away from it that God showed us in a huge way what He was teaching us.

All because a bunch of people agreed that it was "what God wanted us to do".  All because they pulled together and pulled it off.  Not just raising money to benefit me.  They pulled off reflecting the Kingdom of God in the whole process.

Honestly.  

I cannot do it justice - I keep looking for a word that is better than "thank-you".  But God keeps pointing the finger at what He has done and keeps saying "it can happen".

Pay close attention, Karen Gerwig.  God has announced and then taught and then showed you - what you have not seen before.  Pay attention and remember.  And pass on that remembrance all the rest of your days.  Because the Great I AM moved on your behalf and raised up a community about you like few have seen or had privilege to encounter. 

*******

Jim and Lee Ann said it this way in their last email to all who helped.  They included us on that last one and it was pretty awesome.

Benefit Family,

If you follow Karen's blog, you have heard this song recently!  Oldie but a goodie, right Karen?  Yes, we've included Scott and Karen in on our final pre-benefit email!  Hi, guys!

http://youtu.be/cmlTIUWHM8Q

If you are a former Messenger, you may remember listening to this at 2 am at Bob and Lisa's house while our kids slept(or fought!) upstairs on the floor.  We've come full circle guys, and we've brought new ones with us.  How many people get to say that?

What an example of the Kingdom you are.  What a glorious, beautiful picture of what eternity holds for all of us.  No fussing, no fighting.  Selflessness, kindness, generosity. 

Yes, the Gerwig's are in Egypt right now.  But God is executing judgment on the gods of Egypt.  Cancer, fear, anger, despair, loneliness, isolation, pain, nausea, neuropathy, the unknown.  In this journey, He has used us to shine light in the darkness.  These gods will be judged, and they shall not prevail.

We are destined to win.

See you tomorrow.


They have done the Exodus study as well, and realized along with me that I was in the midst of Egypt and its plagues.  In the midst of having leaven grow in my body.  In the midst of the dessert now.

But even though I have been isolated for months, the hilarity of the God I serve is that He has shown me in a great way what community is all about.  The dessert is not desolate.  Nor God-less, nor hopeless, nor friendless.

This is pretty cool if you have four minutes.  If you don't - save it - you may need it later.

http://www.youtube.com/watch?v=u3bvRxbOp80&feature=youtu.be


But God is bringing me full circle.  He is teaching me more than I ever thought I would know about Him.  And probably more than I deserve to know.  He is teaching me joy in the dessert, knowing Him in the dessert, and knowing His community when I have never been more alone, but more full of His community. 


Isaiah 25: 4-5

You have been a refuge for the poor,
a refuge for the needy in their distress,
a shelter from the storm
and a shade from the heat.
For the breath of the ruthless (cancer, my word)
is like a storm driving against a wall
and like the heat of the desert.  

cousins and all

This is me, in my way-cool t-shirt at Kristi's house - with a little eyebrow 'drawn' on - ready to go for my long day at the cancer treatment center yesterday.  

***

Growing up I had boat-loads of cousins.  I didn't know all of them at times as my parents had a "second" family later in life of which I was part of, making most of my cousins almost a generation older than me. 

I didn't see my older siblings all that much, who would have probably connected me more to my older cousins, so I have spent a lifetime being around people that remember me when I was young, all things of which I have little recall. 

It makes me a little uneasy at times as it is odd to realize that they know me, and probably held me and played with me when I was young, but I don't 'know' them.  As with most families, 'drive time' and other things took out a lot of visits as I got older and would have 'polished' those connections better. 

But they are a loving group of people.

My mother's family is a pretty cohesive unit and they don't let little things like distance - we live two and a half hours away from most of them - or me being a huge introvert and a little overwhelmed at family reunions - stop them from time after time reaching out to me and embracing me as family. 

I so love how they continue to live out my grandmother's legacy of "family first".

I get the coolest letters every so often from my cousin Shirley.  Her mother, my Aunt Zilpha, was diagnosed at age 85 with breast cancer.  As far as I know, she is my only other relative with that diagnosis.  To her, that was kind of a "blink" in her life - she lived zealously 14 years after that.  I loved her and her excellent recall of family history and could listen to her stories for hours.  Shirley reminds me of some of those stories in her letters and it is such a comfort and a connection to ones I hold dear. 

My Aunt Faye has had numerous health issues and maybe been in the hospital more than me lately, but has faithfully sent me cards and campaigned on my behalf with her family and friends to help us out, and I don't know how she does all that she does. 

It's like she has an invisible tattoo that says "care".  Care about those that you held when little.  Care about those that are sick.  Care about those that hurt.  She has a large family and the best excuses that anyone could produce at her age and her level of busy-ness. 

But I get regular cards and encouragement from her. 

My one cousin, Kay, set up a "T-Shirt" drive, or a "shout-out" for me if you will.  She asked all of my cousins to send me a t-shirt as I had mentioned in my blog once that I wasn't sure I had enough t-shirts for errant nose bleeds and such.  She and her husband, Joe, have done much to keep family relatives close and when something happens to one of us, she makes it known to the rest. 

She wants us all to care.   

Joe has been battling cancer for four years.  He is pretty amazing and quite a standard set for me to live up to on days that I feel like whining.  In fact, my mother was a little put-out when I told her I had no control over being at the benefit last week as that was all under the part of my life titled "Doctor's Orders" and my blood work results that week.  When I realized she was not believing that, I also threw in the fact that it was my third chemo day of the week and that last day was kind of a hammer, but she was nonplussed and said "well I think Kay and Joe are going to be there - Joe must handle his chemo better"........ see me smiling here, Joe.  Sigh. 

I never realized how nice it was to get cards and small packages in the mail.  Or restated:  I never knew when you were isolated and unable to carry on conversations and unable to read mostly and unable to interact easily because it took my brain five minutes to catch up -- I never knew how nice it was to get little packages - and sometimes big packages - in the mail.  My sister that lives 2,500 miles from me is like a rock star in this arena - but I have always been "too busy" with working and kids and sports-sitting and sicknesses and such.

Those are pretty pathetic reasons, but I never realized the importance of it all until I had to live it. 

They started to show up.  I have a bright yellow t-shirt from my cousin Nancy from her workplace in Cambridge that I use to walk outside in if the weather is hot.  (I tend to "drift" when walking, so I think the bright yellow will help a car see me in the middle of the road easier.)  There have been others that are cancer related that I pull out and layer on some days - I tend to load up on clothes in the morning, then start taking off layers after noon, then put back on, then take off - so they have come in very handy.

I usually wear the first layer close to my skin turned inside out, as my 'chemo-skin' crawls now when feeling seams or tags or anything else it might think a nuisance.  I'm just throwing this in here, because I forget I do it some days, and when I am down to the last layer some seeing it think my brain just took a permanent vacation and want to refer me kindly to the loony-bin. 

Zoe walked in one day and saw it and her eyes got really big as she is now all things "proper-ways-to-dress" and she pointed it out to me.  I told her my skin doesn't like to feel the tags and seams now, and she looked at me admiringly - like I had just confirmed what she knew to be correct but was not allowed to do - and said enthusiastically "MY SKIN TOO!" 

***

All that aside, I have a whole new appreciation for those that take time to do kind things for other people, then actually get them to the post office and mailed.

I also have a whole new appreciation for my extended family. That's something that is becoming more and more uncommon and rare, and the legacy that has been passed down in my mother's family is pretty awesome. 

My Uncle Clarence upon seeing me at the annual family reunion, could recount each one I had been to, and then filled me in on the ones that I had missed, all with that wonderful laugh of his and a loving smile on his face -- and a nudge from his elbow encouraging me to "get there more - I was missing out".  (they all have pretty excellent memories.....) 

A couple of years ago, our daughter Kristi sensing that we were getting too far apart from each other in our own family, called and said "let's make an effort to get together once a month".   It was the greatest thing and we hope to continue that again soon. 

The importance of that has been set in their brains as well. 

The t-shirt in the picture is actually, and this is a little embarrassing, but it is actually from a set of pajamas that my niece Catherine mailed to me from Oregon.  I have worn it quite a bit on days I need to remember "my-fighting-Irish-DNA-within" and she has always reminded me of the flawless beautiful fair skin you see from those smiling Irish beauties.  But I love the slogan so much, that I decided I needed to share it with my nurse-buddies at the Stephanie Speilman Center yesterday. 

They loved it.

So did everyone in the elevator.  So did the ones checking me in.  In fact the one young lady scanning my insurance card in her office told me "you really are rocking that hat and t-shirt today!!"  (They are awfully nice there...) 

This week especially, I have been grappling for a word that is deeper than thank-you.  I haven't found it yet.   So, I thank you all.  I haven't been on top of the thank you cards going out and for that I apologize, but you all have been awesome through all of this. 

***

I googled some quotes, because unlike my extended family, I have little memory left.  These folks say it maybe better than me:  

The family is both the fundamental unit of society as well as the root of culture. It ... is a perpetual source of encouragement, advocacy, assurance, and emotional refueling that empowers a child to venture with confidence into the greater world and to become all that he can be.
MARIANNE E. NEIFERT

Family traditions counter alienation and confusion. They help us define who we are; they provide something steady, reliable and safe in a confusing world.

SUSAN LIEBERMAN

And my favorite on the website I checked:  

There is an interconnectedness among members that bonds the family, much like mountain climbers who rope themselves together when climbing a mountain, so that if someone should slip or need support, he's held up by the others until he regains his footing.

PHIL McGRAW



 

The harsh clay ugliness in the midst of the blooming flowers

Back to the business of cancer ~ Tuesday's which for three months were my only "good" day, have now become my worst enemy the past now four weeks.  Something happens with my stomach, and it hurts like "do your first level of Lamaze childbirth breathing" feeling at times hurt.

Although, if you took Lamaze classes when I did, you know they told you "it wasn't pain - just contractions".....  And I'm a jelly fish swimming in the ocean.   

To date, heaven help me but I have not found the right drug to help it.  Scott rifled through his medicine chest of all-things-digestive-drugs last night, and found me another one to try, so I'm hoping today.  

It feels, and *smells* like something just curled up in my stomach and died.  My breath is noxious, and my teeth need to be brushed like five times a day as they get "coated" from whatever is going on.  It is painful - I don't want to sit as that adds to the pain, so I lay with a couple of pillows under my head and back to keep whatever "it" is, from totally dissolving my esophagus. 

I chill and get the sweats all day long.

I can feel my body start stepping down into this Hades on Monday afternoon.  This week, I am trying to just "drink" my calories.  

We talked about it last Wednesday while getting my chemo, as I was pondering a doctor's visit by late  afternoon the day before, and the nurses blamed it on the Taxal.  They said that even though previously Taxal seemed to be the least of my worries when it came to chemo drugs, it has a cumulative effect - so the longer I am on it, the more it's going hurt me.  And it 'hurts you' seven days out.  Each week.  

Which is Tuesday.

Wednesday morning early, it has abated enough to where I think it was all only a crazy dream as we drive to the cancer treatment center -- until I hit Monday afternoon and then Tuesday again seven days later.....

*******

This all seems miniscule compared to what two young couples are going through this week - they are putting their wee loved babies in the ground.   We went to church with most of them when they were teenagers, and it is just breaking my heart that they are having to go through this.

One set of the grandparents were at the benefit on Friday night, proudly showing off his "grandpa pictures" - and that very evening disaster hit their family in a way I cannot comprehend.

I cannot comprehend the depth of their suffering and sorrow.  I cannot comprehend how you put one foot in front of the other and move after that last sweet kiss.  I cannot comprehend the pain in their heart.   

It is beyond comprehension to me.  To us.  Scott and I just cried when we heard all of this.  Cried for the parents and the grandparents and how it will impact them.  We cried knowing a little bit how deep their feeling of loss must be.  We prayed God's mercy over all of them.

*******

My irises are blooming early.  My late-blooming lilacs by their own standards, are even early this year. There are two pink bushes that I cannot remember the names of that are blooming.  Scott just surrounded all of them with mulch last week, and we sat outside some and just relished the beauty of the blooms. 

They are all pretty tough plants as they were some of the first ones that I planted when we moved here, so they are sitting in some pretty hard blue-clay soil.  It took them years to decide that they might stay, might live and even bloom. 

I don't think I will ever look at them the same again.

*******

Scott got some good news on the phone last night.  It has been quite a week of pain and sorrow and blessing and blooming flowers.  When he closed his phone, he sat down and put his head in his hands and wept.  Wept that we have friends that care.  Wept from relief.  Wept that he won't have to worry about one more thing.

When there are some ugly things in life, and you weep with grief and hurt and with inside pain - standing out against that are folks living the Bible - I mean really living the Bible - stepping in to brush that curtain of grief and pain aside, and it touches you to your very core.

And sometimes you just weep tears of relief and gladness and gratefulness.   He has been carrying some pretty heavy burdens and trying to care for me and figure out fixes to problems alone - it has been a lot on him who is still in some ways having to be cautious with his own health. 

One of my friends was talking about the clay soil in Kentucky lately and how it made her think of the parable of the sower in the Bible, and I have been thinking a lot about that this morning, how the clay soil is so difficult, and how it needs to be amended continually and turned up and produces so little - yet it can at times produce some beautiful things that have adapted to it.

She said it this way:

Hard ground is something we had to deal with in Ky. The ground is totally clay...cracked, and breaks apart easily. It doesn't matter how much you water it , it never seems to stay soft. Just like our hearts, it is so hard to plow up the hard ground around our hearts. I'm so thankful He can turn the stony heart to flesh...He is the spring of water from within..the only One that can change us.

And that beauty in that difficult soil makes you wonder and pray.  I envision a God that is using a rototiller around our hearts and keeping the soil soft and watered and amended.  And that living water and cultivating and amending is all Him, and it's also all the body of Jesus surrounding us.

And we praise the King of the Universe that creates and blesses and takes away and allows pain and loves us more than we can ever comprehend.

It's all swirling in my brain as I lay a little upright and slowly type this.

The phrase that keeps going around in my brain the last few days is "What Hath God Wrought?" 

***

Irises and lilacs and pretty pink bushes in harsh clay soil paint the picture somehow this week.