Tuesday, January 31, 2012

Five Year Plan

We finally cleaned off our desk last night. We have had an ongoing "marital issue" about him being home all summer, and well, he doesn't like to file, I do, and so there were, um, piles. He pays everything online, and doesn't see the need to file anything away....

So while we are doing this, I find my cherished "recovery plan".....

Last November, we - or rather mostly I - had devised a "5 year financial recovery plan". We needed one. The series of events goes something like this:

2000 Scotty in Jewish Hospital in Kentucky with a collapsed lung
2001 Scotty comes home from boot camp with two broken bones in each foot
2001 Scott in Grant Hospital for possible heart / clot issue
2003 Scott had 6 knee surgeries
2005 Scott had a knee replacement
2007 Karen had graves and had to go to part time work
2008 Scott had severe diverticulitis placing him in the hospital for most of 3 months
2008 Christmas week Scott has surgery to remove 18 inches of his large intestine
2009 Heidi had tumor in her brain removed in July (not on our medical cost list, but it was huge)
2010 Scott had incision related hernia repair
2011 Karen not feeling well - different tests, different doctors, etc.

So you can imagine that pile of medical bills. You clean out all of you monies one year to pay them thinking you can recover "next year", but that hasn't happened so much these past 10 years - and I know I am forgetting some - this is not a complete list here folks....

After all these years of hospital bills, drugs, drugstore runs, etc, our retirement "buildup" was looking a little bleak, nay, pretty close to empty.

Our last big "insurance-hell" argument was with the Cleveland Clinic sending us a $6,000 bill out of the blue last year. And they seem to be able to continually cough up those little surprises without any hint or prior bill... We might part-own one of the letters on the sign that Oprah so flashily walked through when she visited with her too-many-to-count doctor entourage....

Oh heavy sigh.

Lot's of people suffer with this same thing - I have talked to women a little older than me paying a lot of money just for health insurance each month. Continual medical costs take their toll.

And to be fair, while complaining about medical costs, I have to say I am so glad they are there. The medical folks and the medical buildings. I love them as much as I loathe them and as Scott says "there is no price tag you can put on your health". Lose your house? Are you feeling better, getting good treatment, in good medical hands? Alrighty then.

But, then add this one to the above list:

2011, December, Karen has cancer

My little 5 year recovery plan is now just a little piece of paper flittering down the street. I threw it away....

Scott gets irritated when I talk like that because he is not money minded by one iota, and he says the only recovery plan for the next 5 years that he is worried about is - mine.

And I do not tell you this to have you feel sorry for us. As I said, lots of people have had back to back to back to back medical issues and they are all in this same boat - unless you have a couple of million stashed away, that nice little retirement sum, suddenly looks bleak, then it is nothing. Many are in this situation.

I tell you for one reason - God is on the job.

I can't explain it, nor do I try, but even when we are not faithful to Him, He is faithful to us. Good hard working folks that work really hard for their money have given us gas cards. Friends have sent money - how they knew God's timing is only known in the heavenly realms I'm thinking.... One group of friends gave us a card that we have used at the pharmacy - and we have been there a lot lately.

Until you fall into the labyrinth of all things medical, you don't understand the stress caused by the costs - "another biopsy." - "do you realize how much out of pocket the last one was?" "Try this drug then" -- meaning the $24, or $56, or $138 you paid for the last one is a bust. There are a lot of "incidentals" along the way. Rather lots.

I remember staying at the Cleveland Clinic when Scott was so sick at $139 per night -- there were families that had been staying there for 6 weeks with their loved ones. They got a little bit of a cost break - like $20 less a night, but that still adds up to one huge bill.

Being sick is costly - and there are few insurances that can / will cover more than the minimal. Scott and I make huge deals with each other to avoid being the one to have to call the insurance company again. (and yes, I have mowed the yard on a hot day while Scott sipped lemonade and spoke calmly to our insurance company in the shade....and I was glad of it) It's not an easy place to land. I can see why some cancer patients with long term treatments lose their homes, their jobs, their insurance. Everything.

But God is on the job. And I am so thankful.

One Rabbi shows a large picture of Israel, and it looks like a desert with a few pieces of grass here and there, maybe a tree or a bush, but basically not somewhere that I would plan to picnic at any time.

He asks "what do you think that might be?" - and everyone of course answers "desert". He says "you're all wrong -- it's pasture land".

I grew up in Ohio and if I knew one farmer that put out a dozen of any type of grazing animal on that kind of pasture he would be on the 5 o'clock news that night. PETA would have him hanging by sunrise.

To me, grazing lands are lush. They are full of green grass. They look beautiful when the wind blows over them while the cows are munching.

But he said this - this picture of what I think of as pretty close to desert - this is what the 23rd Psalm is maybe closer to talking about -- we think of lush pasture lands being just that - and they last all summer. But maybe what the Psalmist was more talking about is the shepherd that takes the flock out early in the morning to that very "pasture", seeking for clumps of grass here, some there, walk on farther, find a few more clumps - and the flock is nourished as long as it is able to find those clumps that pop up overnight in the cool and dew. The green pastures that he talks about are not going to be there for the whole summer, but maybe just that day - then they shrivel and dry up in the heat. And the next day, you go out and find another "green pasture".

RVL says it is a picture of God - God wants us to know that He will lead us to green pastures, but probably that pasture is good for that one day. That day. Then you get up the next day and look for more. He feeds us bit by bit by bit, and David knew that very well tending his flocks.

So I am thinking that my "5 year financial recovery plan" was not a bad idea, it just was not going to happen. And in my misery over realizing this, God reminds me that there is a clump of grass up ahead. And another. And Karen, don't you quit looking, because I am leading you.....

If David led his flocks in that very land and wrote that Psalm, and proclaimed God's goodness after seeking day after day after day to feed his flock -- who am I to question the leading of God Almighty from one clump to the next? Who am I to sit miserably and mull over a 5 year plan that cannot happen? Maybe I have looked over the beautiful pastures of Ohio - that last all summer long - a little too long and don't get the idea very well - I am not used to desert pasture lands. I am not used to having to trust that the next clump, the next green pasture is going to be there for the day tomorrow.

The "Shepherd" idea is a little more real to me now......


Psalm 23
A psalm of David.

1 The LORD is my shepherd, I lack nothing.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 he refreshes my soul.
He guides me along the right paths
for his name’s sake.
4 Even though I walk
through the darkest valley,[a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

Monday, January 30, 2012

Good Things

Sometime it is easier to write about the moments of despair. The moments of angst and hopelessness well up in you and you *feel* whether you want to or not. I relate to a lot of Jeremiah's lamentations as of late.

But not today. Sometimes when we are laying in bed at night I tell Scott "tell me something good - tell me 10 good things". And he does. Here is our list of sorts the last couple of weeks:

1. He always says 'I love you'. Please note, we have had some rough patches in our 30 some years of marriage - so when he says that, I do not take it for granted.

2. "We have raised some pretty great, strong, and courageous kids". They love and yet they would die on their front door step for what they believe to be right in the eyes of God and man. That's kind of rare and we are proud of them for that.

3. "We have 5 sweet little dictators ready to take on the world". We both smile.

4. We are thankful for the people our kids have married. So very thankful.

5. He says "the flowers will be blooming in a couple of months, and by then you should be able to be around them". He wants me to remember why I need to remember spring this year.....

6. Rubbing my arm he says "I'm glad I'm here to take care of you". He barely crawled into our car leaving the Cleveland Clinic two years ago. He had a long six months of illness. I am so glad he is here, too.

7. "Strawberries will be ripe in June, and along with the four other little "gleaners", we will have little Baby-Bird come and help pick this year." We mostly plant strawberries for fun allowing the grandkids to "harvest" at will and their pleasure. We want them to remember us for goodness, and sunshine and being able to step into the middle of our strawberry bed reaching for that perfect one while squishing five, and not get scolded. They can eat as many as they can find. Those are pretty glorious days -- the cycle of life all in one berry picking experience.

I remind him that we forgot to replant the strawberries last year. He says "we'll get some started in time".

8. "We have friends helping us through this". And we both start to cry a little at the humble notion that our friends are holding us up and helping us more than we could have imagined.

9. "We only missed one exit this week". He hates to drive in the city - I usually do it as I drive it more often. Not lately though. I can imagine the angels in heaven groaning when assigned to us on "city-driving-days".....

10. He smiles at me and says, "You look really good in hats". I don't think I do so much but it means the world to me every time he says that.

And this is a bonus -- we usually end up laughing at something one of our wee ones have said, or something they have done or the naughty things they dream up, or the great and deep wells of love and emotion they bless the earth with.

Last time we stopped in Addy was showing us her newest ballet class 'moves'. She's pretty good all of a sudden and we are so pleased with her progress - she has worked hard. Younger sister Millie, who took ballet earlier this year went over to the end table in their living room and said "'member Popop, I showed you this last time?" and she leans on the table with one hand, puts one hand in the air and lifts one leg far behind her. They had tried to show Popop how to do it last time we were there and they sorrowfully determined he was not such a good student.

So little Millie says in her little 3-year old "I-want-you-to-succeed-teacher-voice-because-we-should-all-work-hard-until-we-succeed", she says, "see? see Popop? It not that hard. Now you try." And he did because there is just the kindest bit of encouragement in her that she wants everyone to do their best and he just cannot turn her down.

We laughed for maybe 6 and a half minutes. Millie says with her finger pointed in the air because she knows what needs to happen here - she says "you need to go home Popop and work on this". We laugh for 8 minutes more.

Life is good.

Sunday, January 29, 2012

hair

The days of the hairs on my head are numbered.

In our society, it seems that the first word that jumps to mind with the word "chemo" is "hair". Not "treatment plan", not "type" or "stage" - but the first concern after the word "chemo" - is, well, "hair".....

"I have cancer". "When does your hair fall out?"

Don't worry - I know it was one of my first concerns as well.

After my first two and a half hour long consultation with my oncologists, it dropped down to like maybe "Concern Number 18".

For my type of cancer the word "lethal" shows up three times in the "Trial News" on the cancer society's information page. The information packets and my lengthy chat with my oncologists all helped to bring hair into perspective - it's not your biggest worry, honey. In fact, the word "hair" never even came into the conversation.....

I won't lie to you - Concern Number 18 gets just as many tears and frets and sadness as the first 17 do....

It is coming out by the brush-fuls this week. If I touch it, more comes out.

I cry when I try to talk on the phone with my daughters about it. We cry and laugh. And laugh and cry. They grew up in the midst of my dysfunctional hair relationship and the irony of this whole thing is not lost on any of us.

When someone looked at my hair a couple of weeks ago giving me some options for my upcoming 'chemo-hair' loss, she said "wow, you have some really, really thick hair - this is going to be hard for you because there is nothing that can give you that much volume. It will be different looking in the mirror, not only because of your hair loss, but yours is so thick it will really change the way you look...." She was kind and sweet and I mused over her words for a few days.

She was right. There have been times where I have almost willingly shaved my head myself. My hair and I have never been on the best of terms. It is unruly and curls in odd directions. It frizzes. There is a bump at the part line every day of my life because that curl closest to my head cannot be moved nor straightened nor tamed by anything short of an atomic explosion.

I remember the day I sat in Don's - my-best-hair-guy -- chair, and he took like 20 minutes just running his hands through my hair and asked me if hair this thick and this curly were difficult? And I said an emphatic "YES!" and he said "it works 'just right' one week out of the month, and the rest of the time it refuses to do any curl correctly" and I said "YES! YES!"

My hair seemed to have met it's match somewhat..... Finally - an-obstinate-curly-hair-snake-tamer of sorts.

He told me on top of all of that, I have a triple 'crown', giving me even more hair grief most mornings than Phyllis Diller..... I cuss it. I tug it. I use a two-inch curling iron and then a straightener. It has no inkling towards obedience on any terms.

Until this past week that is. I have found it obedient to one thing - chemo.

Yesterday after washing my hair and pulling half of it out of the shower drain and the other 4/10ths out of my brush, I fondly patted my Paul Mitchell's bottles of "tame" and put them away.

There will not be another dry and tug and straighten and curl session in my bathroom for a while.....

My hair is all over the house - if I pull the slightest bit on it, a lot comes out. And in the spirit of full disclosure, I was a little curious myself to how it would all happen as well. This is it.

Someone came to our door yesterday with some wonderful soup and cupcakes, and I thought I might cry - she was the first to see me with 8/10ths of my hair in the bathroom garbage can and I wasn't sure I could open the door. I said something I don't even remember, and shut the door. To her credit, she didn't bat an eye.

Scotty stopped down with the twins for a few minutes and they walked right in and said "wow grandmum - I love your hair"...... whether they were prompted or not, I don't know, but I hugged them tight for their sweetness.

So today, I have two daughters show up at my door - kind of like the dynamic duo - and we do what most women are want to do when the going gets tough and the neutrophils are low - online window shopping - looking for "chemo-hats". They are a little bit bigger, cover the head more - especially this time of year.

When I need to go out and shop for a few things the most - I can't. Because stores have gazillions of germs. Apparently, I am supposed to avoid anything close to germ conglomerations this week - namely people. And maybe for the first time in my life - you know - the "Introvert's Handbook loner of the year" - this week has been a little lonely. Because, my white blood count is just one germ away from calling it quits altogether and catching the next open train car out of town...

So Batman and Robin took their temperatures and lathered on the hand sanitizer and walked right on in my door.

I grieved when my kids left home. A lot. With the girls, one of the things I missed was having fashion advisers each morning. There was no one there to pull the hairs off of my clothes before I went to work. There was no one giving me shoe advice. There was no one to tease me into doing something new with my hair. I missed the "girls-only-girls" time.

But today they show up at my door, driving a long time to get here, and start pulling out my collection of hats and my clothes to match up. Scott brought down a mirror.

They put scarves to my hats to my tops to my sweaters.

They helped me pick out an identity when I am losing one. They helped me think out options and outfits when I didn't think I had a whole lot of wardrobe options.... I have a friend who looks very cool in a pair of jeans, t-shirt and do-rag --I didn't think I could pull off "biker chick" look like she does. I was not sure I could do the - well how does one say this - older lady thing and wear the older lady types..... I was at a loss, and I didn't have the energy nor the time to explore any of this.

They sat me down, did a thorough consultation with me, then typed me and staged me.

I now have "recovery-comfy-options" - that I can wear out of the house. Heidi has had some experience at "recovery-wear"......

Right now I am snuggling down into the red fleece jacket they bought me, with my fleece hat on, and feeling snug and loved. I'm feeling like I can do this.

I think I can open the door now, and when I am finally allowed outside my door to interact with other germ carrying human beings again, I am going to be feeling even a little comfy-chic as well.

processing......

I am trying to process how one such as I land in such precarious places: my oncologist - the one who is like the only author and finisher of my treatment plan is still in Poland. Like a million miles away Poland. My new medical-BFF-trial-nurse-scheduler-Julie, had emergency surgery of some secretive sort over a week ago. I mean I would send her a card, but I don't even know her last name. She has slipped over the edge of the known world.

Much time has been spent my last two trips to OSU merely trying to find someone, SOMEONE, to mix up my skulls-and-bones drug cocktail, or - as was the case last Wednesday - NOT mix it.

I am in no-mans land.

I missed my last treatment because my blood - my very own blood that I thought to have taken such very good care of - flips me off, ties some lunch on a hobo stick and starts to trot on down the road......

I am somewhere between Odysseus ending up in the cave of the one-eyed Cyclops and the Sirons. (don't worry, the Sirons would not entice me all that much right now...) I feel like I am riding a flatboat down the bloody Ohio River heading to settle in Ken-tuk-ee, with a hundred set of Shawnee eyes stealthily watching from the cliffs overhead, planning my tortuous demise. I am Pa Ingalls unable to get to the house from the barn in a horrible blizzard because the rope they so thoughtfully tied the night before came undone.

I am in the middle of Los Angeles without a GPS. I am on the Amazon River without a guide. I am tiptoeing by an al Qaeda terrorist camp, whistling in the dark.

Don't you see the iceberg up ahead Captain Edward Smith????

Lots of good folks are praying and praying and lifting me up before the throne continually, but this day, in this situation, I just feel so alone.

Tell me Alice, which way is out? It is so easy to slide down the medical-rabbit-hole and lose one's way. On each side I look, it is dark and calamitous and I am not sure which foot to put out first.

I don't know which path leads to the best medical help. The door that seemed correct and helpful is now just banging in the wind. I think the Cheshire Cat is purring...

I don't do cancer every day. And even though I have had a total of maybe 13.25 hours of education on my type of cancer now, I feel like I know even less.

I am in the very hands of God. The only ones around me are the ones that are praying, and I cannot trust in anything other than the hand of God.

One of the Rabbis I listen to tells a story and it goes something like this: A Rabbi has left his students after dark and takes a wrong turn heading home. Not noticing where he is while deep in thought he hears someone ahead commanding him to stop. The loud voice, obviously a Roman soldier, yells "Jew! Tell me who are you and where are you going!?"

The Rabbi answers back "tell me, how much do they pay you for your work?" and the soldier somewhat sarcastically answers "3 denarii a week".

The Rabbi answers "if you will come work for me and ask me those two questions each morning I will pay you double your wages"......

I am lost. I am now somewhat medically alone for what I realize are really important weeks in my treatment.

So I guess I better know now who I am and where I am going.....This kind of makes me shiver.

If my foot had not been on the rock, it would have slipped. If I did not believe that there was a "Most High", I would be dashed in the deepest pit. If I did not remember Joseph, and David, and Jeremiah, and Ezekiel, and John the Baptist and the focus of my study this past year - Moses - I would not know to Whom to pray, to Whom to turn, to Whom catches me when the captain is not on the lookout for the icebergs.

Trust me, I so do not feel like "super-Christian" here. I shiver and I quake probably far more than I should.

But God is bringing me down to this one very, very important point - I am in His hands. And it doesn't matter if I can see the path, I just need to know who I am and where I am going.

Thursday, January 26, 2012

words and songs

Some words keep coming up again and again - from different people that I do not think even know each other, but it's the same words: "community", "river", "shade"; and my favorite "wings".

I love the imagery in this song - "inviting all to go down to the river and pray". I love the photos attached to this song - my mother had a family that was good to each other, helped each other and the five sisters and one brother in her family could easily be the photo at the start of this song.

One of my favorite pictures of them is a group of women in 1040's style dresses walking up through a lightly wooded area carrying dishes full of food to get to "Grandma Harper's house" for Sunday dinner.

I come from a long heritage of good, strong women. Several medical personnel have taken my family history of cancer and I reply "the only one was my Aunt Zilpha had it at age 85" - they look over their glasses at me and want to know if she "succumbed" from it. I laugh and say "no" she lived 13 more years cancer free.....

My Grandmother read her Bible through each year. Faithfully, even religiously. She was blessed by it. She was 105 when she died. The funeral home director had sat up maybe 50 chairs for her funeral, and he spent the rest of the afternoon setting up more chairs. Lots of chairs. Her charity and kindness and righteous indignations and baking skills were all legendary.

I know they all would love this song. And the idea.

Come pray with me at the river today......


by the rivers of Babylon

Some days are just bad because they defy most logic; and hopes that you had pinned all over your soul mock you and float too easily away..... I had done everything within my power to make it to week 3 of chemo treatment, and I failed.

My naughty neutrophils failed. And they weren't the only ones in my body getting ready to sneak over the side of the ship - my WBC, RBC, hemoglobin, hematocrit and yes - insult to injury - I find my very platelet count is tying on it's life vest in front of my very eyes.

I found that as much as I did not want to walk into that hospital yesterday, I wanted to walk out even less.

I knew in a flash what it all meant - it meant that even though those evil conquerors that were determined to take over my body a few short weeks ago had been slapped into a shaky line of obedience, and some had even begun to flee; they had regrouped quickly and boldly staged a coup. They were boldly stepping out, saying "look, we brought along some other comrades as well"....

I knew my window of opportunity to crush that enemy was closing a little bit fast, and I was off the battle plan and there could be severe consequences. .

I knew it all in an instant, and like Ezekiel when he got to the rivers of Babylon, I sat on that hospital bed and wept.

By the rivers of Babylon we sat and wept
when we remembered Zion.
There on the poplars
we hung our harps,
for there our captors asked us for songs,
our tormentors demanded songs of joy;
they said, “Sing us one of the songs of Zion!”

If you are looking for nice "Christian-ese" from me, or are demanding nice songs of joy, read no more. I, like Ezekiel, wept and mourned, for it seems for this moment, my enemy has overtaken me. I hung my harp in the poplar tree and sat down and mourned for Zion.

But Nurse Kim who is studying to be a pastor, knows a "harp hanger" when she sees one and she pushed me back in to my room as we were packing and leaving and she closed the door. All 5 foot one inch of her.

She prayed that God would see our tears and hear our weeping and that we would mourn and raise our heads up. She prayed for my healing; prayed for Scott pouring himself out like an offering, giving the care; she prayed again that I would hold my head up and that the battle would be the Lord's.

We went to the car and got on the wrong exit. We got to Kristi's house to pack up our belongings and found we had locked ourselves out. We started on the road home, and the "CHECK ENGINE LIGHT" came on after we had oiled, lubed and rotated it last week to the tune of $86..... We have put over $1,200 of repair in that car yet it is demanding more......

We felt two steps and 3 miles away from imminent disaster.

We turned on the 'oldies' station and the happy "I can see clearly now the rain is gone" was playing. We came home to a pile of new bills.

But woven through all of this was the knowledge that God put His people, His help continuously in our path yesterday.

A co-worker left her job to drive a 40 minute round trip so she could press a button and open a garage door for us. She didn't even get out of the car, but waved and asked us if we needed anything else, and drove back to work - she was on the company dime - but as a huge favor she did this for Kristi's folks.

Our son sent us a text reminding me that he is O-negative blood and wanted to know if a blood transfusion would help. My own son's blood to strengthen mine.

We stopped at Heidi's on the way home for a short visit and one cannot be sad when there are two mighty wee ones full of happiness and lunch. They luxuriously held up their mini tacos and told the many and intricate glories of those food items, as they wolf down their restricted diet and know even though they cannot eat half the things they see their friends eating, there are still good things in the world.....

One of Heidi's friends in Florida had sent a box for me - full of books and chocolates - she is a professional writer, but had been reading my blog and sent a box that could not have been more timely. I was blessed and humbled all at once.

Friends sent texts and emails, and I cannot explain how much those words were soothing balm to the open wound in my soul. They were perfect timing and made me cry tears that need to come out to start to mend what is broken down.

A friend stopped in to talk with Scott and just listen - he is so strong but so scared, he needed a kindly ear.

So as I was thinking the journey could not get much worse - it didn't.

Somehow through all the junk along the mournful way, God wove people - His people that I am learning I need - because I am an introvert of introverts and I am usually the one to do the care-giving - but God has put us in this place of learning *community*.

Those people He wants to be in a community with each other and help each other and hold one another up when we are too weak to do that ourselves - He wove those people into that tapestry of pain and hurt and mourning yesterday and made it into one that had threads of gold all interwoven into it.

He sent ones to sit beside us on that River in Babylon, and even though there are those that would have us *laugh* at this chaos and *sing for joy* at the torments in our soul, He sent ones in the spirit of Ezekiel to sit down beside us along that river and mourn and ones to apply balm to our weary souls and ones to pray over us and help shield us.

The rabbi I listened to in the car yesterday said there are three things we are supposed to be: the second one is "shade".

God has given me a community of "shade" to sit beside me those days I am by the Rivers in Babylon. They are a foreign place that I do not know and I feel so lost and alone on that river bank - and I know Zion is far away - yet the shade covers me.

Thank you all.

Wednesday, January 25, 2012

blood work fail

The first thing they do before starting your IV-chemo drip is take a CBC to ensure your blood levels have not dropped too dramatically.

Mine failed.

I am headed home to give the cancer cells a good long week to get ahead in the game, and try to get some life back into my neutrophils to raise the ratios above 1,000. I am at 600....... 1,500 is what they want to see with most chemo patients; since I am in the study, I could sneak in at 1,000 - but heaven help me, I cannot even open the door....

I am devastated.

Nurse Kim came in, closed the door and prayed over me. She prayed that I would hold my head up and not allow the clouds of despair and darkness to close in around me. She prayed that my blood work would improve enough to jump me back into treatment next week. She prayed for protection about me and in her sassy, beautiful black-african-american-woman way, she demanded that the devil scoot right on out our door....

I wanted to take her home with me.

Tuesday, January 24, 2012

one before me.....

There have been a lot of dark hallways, murky waters and scary, shadowy monsters in this whole process of jumping feet first into the "you are sick" arena......

Some days I am almost out of body, with the jostling, poking, meandering down endless hallways on my way to my next destination.

Sometimes, I hear a doctor talking to me and I look up and see past him a dark hallway, and at the end of that dark hallway I see a shadowy, light figure farther along, walking, half turning, motioning me to come along.

I see her whispery thin, sometimes leaning to one side the slightest bit while she walks ahead, and yet I see her motioning me to keep moving along.

One that I held so dear has walked this path before me.

One that I held dear had to look at possible disfigurement long before me; this one so young looked at having her hair shaved; she sat on an exam table before me not knowing if she would walk away whole after a terrifying surgery. She has walked those dark hallways before me, and I see her shadow beckoning me now in the hallways of that same hospital...

*****

Three months ago I was at my daughter Kristi's house, holding sweet little 10-month-old Baby Bird - and I commented while stroking her - "this is how old Amelia was when Heidi found out she had a tumor in her brain".

We both stopped talking. And Kristi said "yeah, I've thought about that a lot lately".

*****

It was such a difficult time - a young mother with an active toddler, and a baby a whole 10 months old - and she had a tumor in her brain that had to come out.

Life stopped for all of us.

There were no guarantees, but lots of hope. She could come out of the surgery facially scarred for life. She could come out of the surgery not able to walk well. She could come out of the surgery with substantial hearing loss.

She could come out of the surgery different than when she went in.

She has walked these dark hallways before me. Bravely. And I catch glimpses of her all the time - when they tell me it will be time to shave my hair; she looked at the same mirror. When they tell me my diet has to radically change, she changed her kitchen contents in one day. When they tell me my body will be different - she tucked that same fear deep inside somewhere; when they tell me how they will cut to the best of their ability, and do as little harm as possible with a big problem - she has sat alone on a cold exam table and heard this before me.

I wept daily for her, although I tried to be strength for her. She was strong, but it is so hard to look such things in the face when that young. Let alone when that old.

Some days while I am at the hospital I think of her and her courage and know I can do no less.

I stayed with them after the surgery and I marveled at her weak strength -- I could not keep her down. She looked a shadow of herself, weak and hurting, but she insisted on getting up and living her life. She has had a difficult but remarkable recovery. She is walking without a balance nerve. She is working with migraines weekly. She is so sore and tender some days she can barely move her arms. But she got up and got living fast. She knew she wanted to. She knew she had to.

I didn't know then how she was functioning day to day; and I wonder all the more at it now. I watched the waters almost overtake her, but God and her faith and her grit kept her buoyed above.

Sometimes when I see her shadow in the hospital, I wave a little, smile a little and remember that there is a God who gives hope and healing. I marvel at her two happy wee ones, jumping and laughing and playing and delighting in life.

She did all that. I pray I do it as well.

Monday, January 23, 2012

This week

A few bits of information to clarify some things, now that I understand them better.

I am doing weekly chemo treatments. Two of my 3 chemo drugs are IV. The tablet is the chemo pill for the trial I am in.

My week basically looks like this:
The first Wednesday of each chemo cycle is considered D1. There are 21 days in each cycle. I will have 6 cycles.

One of the IV chemo drugs is Taxal. I will have that each week. The second IV chemo drug is Carbo and I get that every 21 days. Thankfully. It's a mean, nasty dog. The third drug is "Ro" which I take Wednesday, Thursday and Friday each week, the same exact time each day. They are a bit fussy that way with their new wonder drug.....

Friday appears to be the "slam into the mountain day" or as a friend calls it "how high of a window do I want to throw myself out of" day. It's like a bad flu, or a slim grade above comatose - it seems to take great energy to just blink my eyes or turn my head; I think of it as "just let me hibernate in a deep cave and please don't touch me anywhere" day. It hurts all over - my teeth even hurt....

Saturday, I feel like I can climb out of bed late morning, and actually start to feel like my body may want to rebuild a little after all - when it appeared just a few short hours before that my good cells had cowardly conceded the fight and were packing minimal belongings in their saddle bags, grabbing the fastest horse out of Dodge....

Logically, one would think Sunday to be a step farther down the road to happy cell rebuild. It is, but just when I am getting all "positive" it seems to sneak up on me and surprise me - I'm emotional; I cannot stand smells; I get nauseous; but I do feel better.

Then Monday, I wake up and my body is just happy to be here. Tuesday, I kind of feel half normal again and then Wednesday -- we start all over again.

Wednesday's do not seem half bad tho - the steroids at the right dose actually help you to feel better than you do. I'm guessing that "steroid-bump" wears off sometime Thursday afternoon, and then your poor body is left once again in Hiroshima, trying to survive the blast and drag itself to start cleanup again.

Don't worry - you will not be the first to call me a little melodramatic....

I'm in the third week of my first cycle. This is the week I am least looking forward to (I mean, other than the other 15 weeks after this) as I am slated to be at OSU for a 12 hour day on Wednesday, which is fine, half a day on Thursday - and their "half a day" can mean anything from 3 hours to 7.5 hours; but FRIDAY, 12 hours again. Yeah, the same FRIDAY after chemo that is "SLAM ME INTO THE MOUNTAIN AND HIBERNATE ME DAY" - that I do not look forward to spending with others on a miserable bed in a wing with miserable smells. They also want me back on Saturday - I am guessing Scott is going to have to tie me to a chair and bring me in "granny-style", maybe even kicking and hollering a bit, too. Have your cameras ready.

I'm trying to decide what to pack - if anyone has a nasty "I hate IV chemicals" t-shirt handy with a bad hand signal - I'll take it. Don't get me wrong - I'm hanging with the Lord through this whole thing - but I am not above any t-shirt stating my deep heartfelt sentiments about the levels of suckiness of this treatment.... So, what to pack?

This is the week my hair is supposed to start to fall out - so I'm guessing a big box of tissue. This is the week they are watching for "bleed outs" anywhere in your body - nose, esophagus, digestive - I mean what - 10 extra sets of clothes so your bloody t-shirts don't make the new patients turn around and walk out before they even start treatment??

I don't have that many t-shirts anyways.....

I'm guessing they might be reconsidering me as "Trial Member #6" at any rate -- I have acquired a bladder infection right off the bat. They set me up with a heart monitor for important stats to note in their "Trial Data" and I dropped the plastic battery pack in the toilet. I would strongly suggest to them for the sake of mercy and future-non-toileted battery packs to not do that on a Friday after chemo Wednesday for "Trial Member #7".....

I am supposed to be avoiding all germs while my platelets are low and I am sleeping with a battery pack leaking toilet water all night long.....

They may not want me back for this week.

My daughter gave me the most luscious box of chocolates last week, and I think I heard the nurse say something like "yeah, it's so hard to go off of coffee and sugar". My brain starts to do an immediate back data search on any of the information in the 342 pages they gave me listing sugar as an enemy combatant.... i don't remember seeing that. I didn't see the coffee warning either, tho.....

I.simply.did.not.question.it. I came home and ate that whole little box of luscious chocolates on Thursday. And I felt remarkably good.

I may not be good "study" material after all...

********************************

All idle musings aside, I beg you, if you think of me, please pray for me. I believe in a God that hears.

I am dreading this - but know I can get through it and know Who's wings I am hiding under. I am "replenishing" myself today to try and kick this bladder infection before getting down there. Nothing would feel better today than a nice hot bath, but those are taboo as well.

Pray for God's protective bubble over me. Pray that I will stay sick-free for the next 18 weeks. This kind of cancer responds well to chemo - the first go-around, then it becomes resistant and harder to treat. I want to get through this and not have anything happen to set back my treatment.

I know a God who if He chooses, can mercifully do that.

Lose my hair? not easy, but 18 weeks. Miss my job? A lot, but 18 weeks. Miss my dear sweet grand babies more than my heart can tell? I cry, but 18 weeks. Miss my kids and their day-to-day lives? Immensely. But it's 18 weeks. Miss restaurant meals and shopping? After all of this, it doesn't even register on the meter.... it's 18 weeks.

I have set my face like a flint towards that goal - if I have to be germ paranoid for 16 more weeks so I don't lose any chemo time, I can do it. Or better said, God can do it for me.

In my mind's eye I see myself as little Millie-bean when she is getting tired - she grabs her bunny, her blanket and just comes and stands beside me wanting to be picked up. When I pick her up she tucks her arms under herself to snuggle in closer and lays her head tight on my shoulder. I wrap her blanket around her and all is good in her world and she rests.

That's what I am doing with God these days -- I just bring my weary self, stand beside Him and He wraps me in the folds of His robe, under His wings and I snuggle in and rest.

Sunday, January 22, 2012

Two flowers


We have the 5 sweetest granddaughters ever created by a gracious God. Two of them, "the twins" were here two weeks ago, Sunday, spending some time with us before we went to OSU. They were playing with these flowers, showing me how they could make them 'bloom'.

I have spent almost every Wednesday with them since they were born. The last couple of years have become what we call "Lodi-Library Wednesdays". You have to say it close together and fast and enthusiastically, like you are saying "Cedar Point" or "Sea World".

They say the "Lodi-Library" is the best place in the whole world, and we can dream of being nowhere else on a Wednesday morning. The librarians love them, they feel safe and confident each time they walk in those large doors and Lodi has a whole section dedicated to nothing else but encouraging children to learn to enjoy a library.

After hanging out in the library, we usually visit the local McDonalds where they are learning to wave and say "hi" to people they meet, because we are all "neighbors" in this world somehow and while we do need to be safe, we also need to be kind; and then we eat the most horrible food this side of I71 - but they love it and do not want to go across the street to Bob Evans for any kind of switch-out bribe I can think up. So they sit and nibble on their nuggets, giggle and laugh about funny things like the shapes of french fries; and we eat our ice cream.

We then go back to 'Grandmumsy's house' to take a nap. They take turns sleeping in the baby bed - they still think it's something funny and fun and it makes them remember all the safe and good times they have slept here before; the other sleeps in the big bed that looks out over the backyard, and if you sleep there you get the 364 page 'Book of Birds' to peruse and memorize.

I lay down with them and read to them. Then we chat a bit. Then they go to sleep.

They wake up groggy and snuggly and we prepare dinner. Last year we added to our evening mealtime by telling them we like to eat this meal a little differently; we want to eat it slowly, and everyone gets a chance to talk and subsequently hear about everyone's day while we eat. I let them pick out the dinner dishes and the special drinking glasses from my vast collection - the glasses are all replaceable but making them feel special is not; they set the table, bring all of the candles they can find and we light them and sit down. Then they get excited and say "hold hands - hold hands" and we hold hands and bow our heads and pray.

Scott starts to pray and they repeat everything he says. It must be sweet music to God's ears; I know it is to mine.

Then everyone gets a chance to tell about their day. I tell Popop that I got a chance to take the sweetest little girls to the Lodi-Library; and how good they acted. They always smile really big and start to talk about the other children there and they process in their minds what is good behavior, and what has hurt others feelings. We talk about the elderly lady using a walker at McDonald's. We talk about the dirty bathrooms. We talk about how many amish buggies we saw on the road.

And they always want to talk about Jesus.

We play afterwards and then it is time for them to go home and they cry because the time always sneaks up on them; but I tell them Grandmum is tired and they get their boots on and walk out the door, with lots and lots of hugs and kisses.

I now have chemo-Wednesdays. I feel cheated.

But that Sunday they found those two flowers that I had bought for them when they were babies. Those flowers have been everywhere - over their bassinet; tied to the crib side; used in the car; and set just far enough away on the floor to encourage them to crawl to them.

They found them and started to hold them shut then take away their hand and say "SEE GRANDMUM!! THEY BLOOMED!!" Then they would hold them shut again, let them go and hold them in front of me making me laugh when they said "they bloomed!"

They know I love flowers, they love flowers; we have spent lots of time outside in the spring and summer working in the flower beds. It was a natural reflection for them.

We asked them what the flowers names were - one was "Sunflower" and after looking at the other one for a moment, they said the other one's name was "Love flower".

They are some of the most special things in my living room right now...

Saturday, January 21, 2012

Didn't even make it much past the starting gate......

I think the first seven years of my elementary education, I missed 6 days of school; and to be fair, four of those were due to a nasty sprain on my ankle aquired while playing 'down-hill-slalom' on a mid-size hill with my uncle's set of skis he had stored in his barn. (honestly, I didn't even get to the 'playing' part - I didn't get more than half way down the hill before I keeled over and screamed for all of the 70 acres of hills around to reverberate mercilessly. My Uncle Paul said those hills had not heard that much hollering since the torturing-loving-Shawnees left the area a hundred years before...)

But my point being - I never got sick. I grew up playing outside a lot, and I like to be outside a lot now. I remember making work-deals with my mom - I would mow our substantial yard before groveling to stay inside and do dishes. I am the type of person that likes to look at a truck full of mulch and go find my pitchfork.

I like to troll green houses in the spring and find that one new plant that I know I am just going to love in the garden and transplant it three times before I find just the right spot for it. I love to garden, I love to dig and move dirt and haul manure and plant little trees in the cold April mud.

I'm kind of hardy. If I had a choice between paying for a manicure and visiting a green house with that same money - the new spring flowers win out every time.

That's why I kind of scoffed at the whole idea of needing to go "low-bacteria" in diet and habits while on chemo.

I will confess up front - I am already a germ-a-phobe of sorts. I am pretty fussy about being sterile when cooking and canning - I get it. I know that we are all just three coughs and two sneezes away from dying of diphtheria because of poorly prepared and/or stored food. My very blood ran cold with ice the day the Novartis Rep bought us a nice luncheon then laid out the methodology and life cycles of intestinal parasites. ..... I couldn't pet a dog for 3 days. I have seen little devils under microscopes that can lay a baby calf out cold dead in less time than it's mother labored to deliver it.

I know some about "germology", but still I considered myself hardier than some and just knew that some of those 'guidelines' were more for others - with poorer constitutions in nature - than they were for me.

"Don't use a dish rag for more than one day"... "Do not eat food that has sat out for over an hour growing bacteria"..... "Use paper towels instead of hand towels".... "Don't eat out of a bag of chips that others have put their hands in"....

I felt like I was reading Leviticus and expected to follow the fastidious priestly practices of the temple mount sacrifices. I read one mandate, digested it, thought I could finally live with it, then read another more ridiculous than the first and would put the papers down. I gained a little space for a few days, assuming this might all be for someone else, not me.

I had wrapped my mind around the idea of no mold and and cheeses - can't have them. I wrapped my tiny little brain cells around the idea of no fresh blueberries when they are so full of antioxidants. I get it - no finger touches. But wine? (yeast). Watermelon? (grown in a field. Maybe, just maybe, if you scrub the rind with antiseptic soap three times and throw salt over your left shoulder before you cut it open, you may live...)

And then......

I barely got out of the starting gate. Nine days into chemo and I have a bladder infection. Bam. Never mind about getting over the Rockies, this little glider plane couldn't even clear the foothills of the Appalachians - I was just trolling along, looked up and there is a wall of mountain in front of me.

I suddenly remembered the little lecture about fevers of 100.4 degrees or more requiring an ER and IV antibiotics immediately, and called my oncologist office sheepishly.

We had been down to James on Wednesday for one of the IV chemos, took my oral chemo on Wednesday and then Thursday; and to my delight felt really awfully good on Thursday and thought "hey - I can do this!!"

When Scott got home from work on Thursday, I did my best Rocky-on-the-top-of-the-library-steps impression for him. He smiled - neither one of us expected that.

Friday morning we had to be back down at James early to put a heart monitor on for 24 hours (part of the study) and I could feel my plane losing altitude as Scott drove. By the time we were done at Ross Heart Hospital - which is just like two hallways, two floors and 3 elevators away from my new home away from home - Doan Hall at OSU -- I was nothing more than a fluttering piece of string holding tight onto Scott.

I couldn't think. I could hardly speak. I.was.dead.tired. Like I don't know how I am going to get to the car dead tired. Like I don't even know which way the car is dead tired. I was standing up, and I think my eyes were open, but I don't think there would have been any activity showing up on an MRI. My cell phone would have shown more brain activity at that moment....

He would say something to me and I couldn't answer properly. He pulled me along, afraid he might actually lose me, then set me down in a chair. He walked me to elevators, pulled me in and pulled me out at the right time, then bundled me up in the car finally to head home.

As of last night, I was feeling the full effect of what the literature, the nurses, the oncologist (did I forget anyone in my ever lengthening list of lecturers and tormenters?) have warned me about -- when your platelets are tanking, and your white cells are dropping, you have little in your defense system to fight this.

It's not like 'drink lots of water, take your antibiotics and you'll feel better'. It's more like get home, have your sweet husband put your cold shivering body into bed, stack on two down comforters and keep pumping you full of water...

This morning I finally crawled out a little. I was trying unsuccessfully to pull off the heart monitor and was too tired to figure it out. Scott walked up to me, sat me down in a chair and then gently started to pull each plug off one at a time.

And I just started to cry.

I don't like this 'un-hardiness'. I don't like being weak. I don't like being sick. I keep trying to refuse it as my identity.

There are a lot who have gone before me down this road and a lot that have had it much more difficult than me. I am counting them up and hold them close in my mind as they tell me their stories along the way. But I still don't like it and don't know that I will ever accept it. I can grieve it, I can learn it, I can take it, but I'm not liking it.

Thursday, January 19, 2012

I believe in the One True God

I sometimes have a hard time expressing myself, although the ladies that I used to sit beside of at work will have a hard time confirming that....

But some stories defy reasonable explanation, and this is one. I'm not sure I can do it justice yet.

My first day at the James, my first appointment was with my surgeon. It was a difficult appointment to begin the day with, but more difficult in that we didn't quite "get" each other. I have worked with doctors a lot of my working life - and to be honest, I don't care if a surgeon talks like brown corrugated cardboard, as long as he is deft with a scalpel blade - I like him.

I also "read" medical folks pretty well and part of my issue with him was that I couldn't "read" him - mostly because the whole time he examined me and talked to me his eyes were like 98% closed. He looked at me when talking to me - but wasn't looking at me - I.couldn't.see.his.eyes.....

That worried me.

He seemed to me the type of doctor that talks as if he has been spanked in a courtroom and will never ever give the help and concern that he once gave and was bit in the butt by it. Or maybe he could not stand to look into that many eyes, that many hours, every day and give dreadful news. I don't know. I couldn't read him....

So he gave me a full 14 minute education on my options for surgery - and please remember I didn't even have a proper diagnosis in hand yet - and then curtly asked me what I wanted to do.

I asked him "what do you suggest?". He answered, eyelids down, "I can't answer that - these are your options - what do you want to do?"

I told him I understood he went to school for 7 years, interned for probably 1-3 years in this specialty field, and then has practiced on his own for several years; that he sees this everyday and I felt like a moron trying to buy a car that I know nothing about except where to put in the gasoline. I then pleaded with him again, "with all of your experience, what do you suggest?"

He took a full on stand in front of me, crossed his arms and stated again "I can't answer that for you. You have to choose."

I was irritated. I was agitated. I almost thought about getting up off the table and walking out to the desk and requesting the next available surgeon.

A 14 minute explanation makes me a sudden expert in all things surgical-cancer......

I was aghast. I looked at Scott, he shrugged, somewhat surprised. I looked at his very nice Nurse Practitioner. She looked at the floor not wanting to give me the merest notion of a hint.

I looked up and*prayed*to God-almighty. Most notably "The God of my strength". El Sali. God of my Rock (Psalm 42:9) I looked up at the brand new paneled ceiling in this brand new exam room and tried to think fast what to do and all I could do in my agitation was 'cry out to God'.

And I did.

Then, then.

There were white wings all over the ceiling. White fluffy feathery wings. Really white. Not the whole wing - just partial but it was all over the ceiling. I felt a motion to lean back - and I leaned back a little, sitting half naked on that lonely, scary exam table and *something* was holding me, hiding me. And I looked, and still there were white wings.

I knew they were the wings of God.

Then I was back in the moment and I told him "option 2". He said "good, good choice" and abruptly exited the room.

I asked his Nurse Practitioner who was left in the room to apparently clean up all agitated-messiness-leftovers - and who I am pretty sure was coupled with him to be the *interpreting* ying to his non-verbal yang - if he actually did the surgery with his eyes opened and she laughed and said yes. She assured me I had the best surgeon in the house and that all of the staff sent their loved ones to him. I felt better about the choice.

I don't know that Dr. Closed-Eye-Surgeon and I will be friends, but the woman doing my EKG that day told me that his scars are so minimal you can hardly see them. And she said she sees them all. In fact, every time each person I met with that day asked me who my surgeon was, and I told them Dr. P., they just shook their heads and laughed and said "you got lucky".

So I puzzled over the wings for a couple of days. I have been following a couple of rabbis this year past, and they are fascinating, and no I am not turning Jewish (at least not yet anyways, wink, wink) but I love hearing their take on the Bible. One especially intriguing fellow who was a pastor that went to rabbinic school in Israel is refreshingly engaging. I have listened to his CDs over and over and over in my car and should have them memorized, but they are so full of good stuff it's too much for my poor 50 year old brain cells to retain at times... It's all from a different angle, and all so darned interesting. And so Biblical I might add.....

Finally, a few days later I started rummaging through my maybe 20 some CDs I have of his to find what I had dinging in the back of my brain. He explains, and I can never retell it like he does - so here goes nothing - but he explains in our English Bibles that we are told the woman seeking healing from Jesus touched the "hem" of his robe and was healed. We Americans just think it was because it was Jesus - zip-bam-boom touch Him and you are healed. Maybe so. But remember, He knew something was different, something was up and He turned and asked about it - to reward her faith.

That is a loaded story and a bit of a misinterpretation in our modern english versions. Finding the Jewish slant on this is a whole lot of things I was never taught in Sunday School.

RVL was talking about how little we know our Bibles and how much most Jewish people did at that time. The woman who wanted to touch Jesus' robe knew exactly where she needed to touch - the "corners" of Jesus' robe or "the tassels of His tallit" - she knew exactly what she was doing - she knew her Bible. She knew the passage in Malachi 4:2 "But for you who revere My name, the sun of righteousness will rise with healing in His wings". You see when a priest raises his hands to bless the people, the shape of the robe and the tassels of the tallit - well they look like wings. And the Jewish people understood the verse to mean just that - that there were healing in His - Priest-Rabbi-Jesus' - wings. That's why she wanted to touch his robe - not just any anyplace she could grab, but the tassels of His tallit - she knew her Bible.

And I might add she knew it a heck of a lot better than this educated, modern, computer-savvy (well a little anyways) literature loving, Bible-reading, sat-in-churches-for-endlessly-long-times American woman does.....

They knew their Bible. I don't. I love it, I read it all, but if Jesus came walking into Cinnamon Lake, I would probably have to think about it, then go rummage through a pile of CDs, listen to the teaching again - then, THEN I would run and grab the tassel of His tallit. I am a slow learner, this Amercian who calls herself Christian here......

I had to think for two days about it before the remembrance came back.

I'm holding onto that vision. I am a skeptic at heart, but I know what I know what I know, and I know that God's wings were over me in that room that day and I was leaning on Him.

I know I felt His hand steady me, I know He hid me in his robe, like a child, while I was leaning back into Him. I know I was under His wings. And I know I do not know the full import of that, but that's ok. I was met by a powerful God - the same God that led the Israelite's out from Egypt in a powerful way - the Jews say with His little finger He can do such things - but He did not show me His little finger, He showed me His wings.

I'm glad I had done the study. He is a God who sees and a God that saw me afraid, and weak and naked and alone and cold and scared. And He wrapped me in His robe and hid me and touched me. And showed me His wings.

We serve an awesome God.

One rabbi says it this way: It is interesting that all through the Old Testament, the Hebrew word for wings in most passages is kanaf when referring to God. Surely, the place of refuge is under the kanaf of the Lord, i.e., under His Word and His authority!

That's where I plan to stay through all of this. I may waver, I might shiver, but I plan to stay under His kanaf. And He is bringing me to this stand-still knowledge - that I cannot do this alone. I need my *community*, His people, to help me cling there.

Wednesday, January 18, 2012

NURSES*ARE*AWESOME*

I have a friend who is a nurse and has done much to walk me through some very dark valleys with this whole thing. I greatly respect her intellect and knowledge and what she is not completely familiar with, she unmercifully bugs the doctors she works with trying to get help and answers back to me.

She got me in for a biopsy at her hospital when the whole known medical world was shut down for 10 days for Christmas week. I can never repay her for that kindness - she literally sped up my treatment by two *very* important weeks.

I have a high regard for nurses. I pay close attention to what they say.

While being on the phone with my oncologists office reporting side effects last Friday, I felt like they were taking notes but not much else. Come to find out my oncologist has made an "emergency family visit to POLAND"...... like-a-long-ways-away-in-the-European-Union-Poland - not Poland, Ohio.

Ohhh Toto.... There was a good amount of time spent today trying to track down her "substitute", who needed to give orders and adjustments for my treatment cocktail to be mixed.

Finally, my good nurse put her hands on her hips, looked to the side, pursed her lips, and jumped in taking control of the situation. We went carefully over my side effects - the most lasting and painful and annoying being bloating - like not being able to sit comfortably 7 days later bloat - and she got on the phone. For me.

The place was packed this morning. I kind of realized quickly that I was not walking into an ideal situation with my "trial" doctor out of the country - she's literally the one writing the book on this treatment protocol. One might compare the action in that wing to an "Oz" at the end of the rainbow - busy and happy - but I was definitely needing a good-witch Glenda to grab my hand and wave a magic wand.....

Lori has worked in oncology for 17 years. In the Trial Phase One wing, maybe ten of those years. She sat down, asked me how I had reacted to the steroids last week, and then as I watched her,,,, she looked at Scott.... I'm guessing experience has taught her who realizes the full-brunt-effects of the steroids - and subsequently can answer the severity of the spinning heads better....

She thought they might be a big part of the problem. She said the first dose of chemo being a "blast" was coupled with that dose of steroids to really suppress my bodily response, and that some people - and she raised her eyebrow at me - get a little "risky" because of the side effects and try a reduction in steroid dose for the second treatment - "because your body is used to the poison a little and does not try so hard to fight it." (I know there is a good Christian metaphor in there waiting to be put on paper someday...)

When it comes to steroid dose reduction, I.am.all.about.risky. She got on the phone again trying to find a doctor to sanction the reduction. She did.

My eyebrow went up when she brought in a "reaction kit" and placed it on the cabinet close-by -- "just in case you needed the full dose and react" (yeah, that brought me back to Scarecrow in Oz) and then we finally started the drip.

She didn't stop there - she told me that there might be a better anti-nausea, anti-anxiety, and sleep aid all rolled into one that I might want to try as I am still waking up at 3:30am with Ambien, and she got that called into my pharmacy.

This lady can move some mountains.

She gave me some really good ideas for some other "tweaks", and even brought me oven*warmed*blankets. I think in heaven there is going to be a blanket warmer full of white soft blankets. Bringing those blankets to patients must be like delivering flowers - everyone loves them and they seem to melt away anxiety and make you smile no matter what the torment. (or as my little Milliebean is want to say "it's just so good, Grandmum" when endorsing a product or food.)

I didn't see one doctor today, but I think I got some of the highest medical treatment possible from another good nurse.

Good nurses are worth their weight in gold and then some.

They are awesome.


**************

Bad News of the Day: my white blood cells have dropped below normal - which is what happens a lot the first week of chemo "they say", but not an ideal situation. She said to avoid germs.

Good News of the Day: my platelet counts still are hanging in there pretty good - that rocks right now.

She said that means my body is still replenishing them nicely, and that I needed to just take it easy when I feel my body "sag" or be "flu-like" because that is when they are tanking and trying to recover.

She confirmed and impressed on us the importance of the no caffeine - no coffee, and since I have been off of it for over a week, I hope I am done with my favorite-drug-of-choice-withdrawal -- (enter stage right the wicked witch of the east - oh, it was ugly)..... She outlined my "low-bacteria-diet" -- no fresh veggies, no fresh fruits, no buffets, no deli items -- mostly my basic diet as of 24 hours ago. It can be most easily remembered by these simple facts: if it has not been excessively packaged, processed, baked, frozen or steamed unmercifully - I should not eat it. Avoid any and all human finger touches and dirt.... (what would Grandma say???)

Get this - after her thorough explanation of the diet, they then brought me my lunch with a fresh slice of tomato on a deli meat sandwich --- it makes one wonder.....

Monday, January 16, 2012

Things your oncologist never tells you........

We met with my oncologists for over two and a half hours the first day I was at James. They asked me maybe 313 times if I had "any other questions". I asked them about the drugs. I asked them about the side effects of chemo. I asked them how much work I would miss.

Funny, I never thought to ask them about STEROIDS!!!!

For those of you who may walk this journey one day, this is just a kindly FYI:
IV + chemo = high dose steroids..... (I am trying to do justice to my awesome freshman Algebra teacher here - she might be proud of my formulation ability) Unbeknownst to me, they go hand in hand, like dandelions and Roundup.

My body's natural tendency to hurl back anything that might be harmful to it must be suppressed.

As the "Stage One Trial Nurse" placed the IV cath she tells me that I am getting injectable Benadryl to calm my allergic response, which is my usual drug of choice anyways, so I was all good thinking I would sleep off some of the long hang-around-the-hospital hours. I understood the need to suppress my body's allergic reactionary tendencies. As the IV dripped, I indeed got very sleepy and dozed a little bit.

Then the very gates of Haedes opened and out stepped unknowingly-steroided-karen. High dose steroid feels like you are swiftly rising in a cyclone - on the outside - commanding it - and heaven help anyone or anything in that path of destruction. I have seen vipers on the animal channel not feeling that nasty.

I was blind sided - I had no idea what was happening - all I knew was that suddenly I had a strong desire to just be meaner than the River Haedes is wide and long. I could have thrown something. I could have picked up something heavy and heaved it menacingly. I could have yelled huge obscenities and not registered one heartfelt tug of remorse.

I think the demons were even quaking a bit.

Enter, poor hapless husband sitting demurely at the end of my bed looking at my new smart phone........ Combine all the "roid-rage" you might see in 3 nights of World Wide Wresting TV and you will know -- Scott didn't stand a chance.

All I can say is after 3 hours of high intense emotional bronco riding - that I was trying to hide from the hospital personnel because there was a morsel within me wanting to be *nice* to them - we are still married.

In fact, I have the kindest husband in the world - he was startled and looked at me like I had 3 heads - of which 2 were spinning around - but he eventually caught on and just smiled and nodded and said I would feel better soon.

He didn't try to pat my arm, though. Kind and smart all in one.

Saturday, January 14, 2012

One week down, 17 or 23 to go.....

I dreamed we all went to Disney last night.

This was the year I had hoped we could pull off one of those whopper family vacations and all of us - all 5 granddaughters, daughters, son, daughter in law, son in laws - all of us - head down to dreamland capital of the world and spend a week watching the wee ones glory in the 'magical'. Glory in being a child. Glory in thinking the world is a wonderful place to be. Glory in the fantasy of life. I love that magical age. Love it.

I realize with each go around of the clock that time is limited, and soon the oldest are almost to the age where the 'magical' stops.

In my mind I played out the possibilities - maybe this would be the year that our income matched up with our Federal income tax withholding and we didn't have to sign our lives over to the IRS again. Maybe this would be the year that the Cleveland Clinic did not call out of the blue and say "Oops - we found yet another unpaid bill from two years ago"......

The next 12 months might have been the magical window of opportunity.

But instead, I *dreamed* we went to Disney and it was magical, and my wee grand-peeps found their 'inner magical moments' that every child needs - and they danced.

**************************************

I woke up this morning feeling the effects of the first week of chemo under my belt. I had chemo Tuesday, Wednesday, Thursday and then, also, Friday. Check.check.check.check.

If you were to have asked me yesterday afternoon how I was feeling, I would have replied it felt like someone had taken a broken, two-prong rake through my digestive track. It felt like I had stepped onto interstate 71 and been whollaped by a fast moving semi truck. It felt like I should just go hibernate somewhere and not come out for 17 more weeks.

But this morning, we work on stomach repair. The chemo stops the fast reproducing cells in your body from, well, reproducing. Meaning it is stopping the cancer cells, but is also stopping the fast growth cells in your mouth and your esophagus and in case I miss my guess - your stomach lining.

There are few things in this life that I can claim to do exceedingly well and one of them is to not vomit. I would never make a good anorectic. I could no more force myself to vomit than I could cut off my fifth finger with a pocket knife. Somehow I feel like this is part of a proud heritage handed down to me from a long lineage of strong female ancestral DNA. That's right - Olympian non-heave DNA.

My grandmother was 105 years old when she died. My Aunt Zilpha was just a few years shy of 100. Not only did they live that long - they mostly lived that long. Remembering how much each of them overcame in their lifetime is strength for my soul.

But the nausea thing is a tough battle that goes on in my body. Maybe if I could just heave and have it over with, it would be better. But then, my super-non-heave-DNA is a *blessing* because I am keeping down that last chemo pill..... It's like deciding to give quarter to Hitler and asking him to just 'come on in and make yourself at home' rather than having Chairman Mao take over half of my known world. It's a war, and I wonder if I am up to it at times. I don't like Hitler's, and I don't like them being invited into my body...... (and yes, we do watch way too many history documentaries here in this house) It's choosing the keen destruction of the German fighting machine over the not so sophisticated but still very evil and life disabling Mao.

So this morning I made myself a greek yogurt and banana smoothie, trying to clean up some after the battle.

And, after putting it off way too long, I am going to pull out and read the 60 some pages they hand out with the title "Side Effects"....... If you don't read it, it's not going to happen, right?

Maybe the best barometer for how I felt was the fact that coffee did not even tempt me this morning. This hurts more than maybe all else......

Friday, January 13, 2012

Needs.....

I am looking for 3 things and these are not to be a new gift, but if you have one of these in your back closet and want to "pass it on", here's your chance:

1. A recumbent exercise bike. (um, yeah, I've used exercise bikes for my clothes hangers too, and "garage-saled" my last one a couple of years ago..... this one is supposed to be better for your back...)

2. A laptop - and as I have a hard enough time figuring out my smart phone, I need one setup ready to go.... I know a lot of folks got ipads for Christmas and so I put this out there... I'm a finger typing kind of gal, not thumb touches. I can then hook into the internet / wifi at OSU while staying there and type to my hearts content.

3. I cannot remember the third thing now....

Thursday, January 12, 2012

Day -1, et al

I had my first chemo this week. The first day was called "D -1 Day". Wednesday was "D 1 Day" and so on.

Because I am in a "trial" they broke apart the 3 different chemo drugs with lots of blood pulls to determine my reaction to them as a baseline. So Tuesday was Taxol, Wednesday was Carbo + experimental-drug-study-chemo-pill and Thursday was experimental-drug-chemo-pill alone, shortened to "Ro". (it rhymes with "ho" - like what I am doing with my body for science - pimping it out)

The goal of 'Phase One' of this 'Trial' is to determine the maximum amount of Ro one body can take and still be effective. I am "#6" - like only 5 before me - and I guess #1 and #2 had some big kinks to work out, but "they say", things are better for us subsequent lab rats.

Regardless of how badly I wanted into this study to short-stop the rapid cancer cell growth happening within me - I nearly walked away - I nearly chucked it all with one phrase from my very smart, very nice, very kind Dr. Mrowzik - "you do remember, NO COFFEE"..............

That was the first time I had heard this. It might have changed my whole treatment plan.

My face must have turned ashen because she tilted her head and asked me how much coffee I drank each day - I said "3 cups" - and Scott, who was as dumbstruck as I was - spurted out "6 cups" - and she looked between us and I clarified "3 large 'super-sized' cups", then I broke into a blubbering confession -- "they equal almost a pot" -- and she looked at me very kindly and said in her sweet accent "vell maybe, ve go down to 1 small cup a day, then next week you stop"......................

I wondered where they had stored the papers I had signed agreeing to this.

I kind of smiled, my pores trembling, begging for mercy with every atom in my body and told her "you can poke me, prod me, test me, slice me, chemo me, poison every cell in my body - but surely you cannot be taking coffee from me"..... she smiled and patted the bed table between us and said "yes".

Coincidentally, this week's symptoms have been hard to sort out. What caused my almost comatose state on the long drive home today is yet to be determined - was it the third day of chemo, or was it no coffee since Monday????

How can they tell the maximum dose of Ro one can take if my body is in withdrawal? How will that show up on my blood counts?

Other than that, the week went as well as could be expected and then some. Kristi and Cal have made up a very cozy nest for us to crash in after our long 12 hour days at the hospital. I am having minimal side-effects from the chemo so far.

They have some pretty awesome anti-nausea drugs, although I do not think I will be eating popcorn again soon.... God has been good and walking right beside us. Thank you all for your prayers - we feel them moment by moment at times.

Wednesday, January 11, 2012

Black Friday...

I was a good candidate for a trial that is being done at OSU by my oncologist. She is adding a new drug to the usual chemo cocktail for this type of cancer. I wanted in - not only because I want an extra advantage over this if it works - but I learned from watching Scott at the Cleveland Clinic a few years ago that you get *really*good*care* if you are accepted into a study or trial.

I needed a bone scan to ensure that my cancer was not advanced beyond beginning Stage 3 - otherwise if I were staged later I would be kicked to the curb with the study and tossed back into the usual "standard of care treatment". Which is not bad - especially at the James Cancer Center - but I am a little alarmed at the speed of this thing and when I heard there was a trial to help curb that nano-speed reproduction of bad cells, I wanted it. Badly.

Dr. Bauer, my oncologist "fellow", had explained the cancer cell growth pattern - you start with two cells and the next day you have four.. Except now I had 500,000 which means the next day I have 1 million -- and you do the math - within one week I can have the whole freakin population of China snugly fit under my left arm with Chairman Mao overseeing ever-living devastation in my lymph chain system.....

So I say it again - I wanted in.....

The bone scan was Friday at 1:30, and by the time they were done it was later in the afternoon. We decided to stop on the way home and tell my 90 year old mother about this cancer - who I was hoping I would not have to tell any of this to, because she is 90 - and while there I got the call at 4:30, Friday afternoon - when all special tests are shut down tight for the weekend - that there were 2 spots on my bone scan that needed a followup MRI. One spot was on the spine, one was on my "5th finger".... hmmm... I grasped at the 5th finger idea as I knew that was pretty ridiculous, and if that was ridiculous then so must be the spine spot.

Not so.

Long story short, my new BFF, the trial-scheduler-nurse Julie called soon after and apologized for the sequence of events and how I had found out - she could hear that I had been crying - but said it could be one of three things: arthritis, degenerative disc disease or, of course, cancer.

My "hope" meter was low on this spine spot thing. Nothing with this whole thing has stopped where I had wanted it to stop - an ultrasound showing a lump in your breast came with an add-on lump in your arm pit. And knowing enough to just be dangerous - I instantly knew if it was on my spine, it was more than likely in my organs.

I.was.devastated. Throughout all of this I had clung to some hope - the fact that I could make it through this with my life was one of them. In a flash - that hope was crumbled.

I wept. And I wept. The whole way home. Scott just drove and patted my back, but I could not come out from under the blanket of despair that had been thrown over me....

With a nice little pill, Scott put me to bed and I finally slept. I could feel him hovering over me at times, praying. I didn't wake up until 3am.

I woke with a peace and knowledge that God had touched me - my fear was gone. What that meant, I didn't know, I just knew that whatever the outcome, God was close-by.

We had to wait until Monday's MRI to determine if it was a cancer spot or other and when BFF Julie called, I could hear it immediately in her voice - it was degenerative disc disease.

My levels of what we call blessings in this life are dramatically and quickly changing.

Big out-let of breath.

Monday, January 9, 2012

Responses.....

My second confession of the week is that I am a techie-moron.  I thought you should be able to comment on 'friends' comments - but find I cannot, so I want to just say thank you all - and believe me your love and prayers are felt and I cannot say properly what that means.  God has been very real to us and we feel Him touching us in the midst of this storm - and that touch usually comes from *others* (community again).

We have some wonderful friends who are rallying around us and keep us laughing, keep us focused on the fight ahead and keep us under His wings.  More than anything I want Malachi 4:2 - "the son of righteousness will rise with healing in his wings".  Our kids have been awesome.  Kristi and Cal have crafted a "nest" for me in their extra room to crash in between treatments.  My workplace has been good to me. 

The two men that prayed over me last night took away my pain - this skeptic cannot explain it nor do I try to......I have walked into this knowing that #1 I do not want this; #2 I do not want to blame God; and #3 nor do I want to whine and say "why me" when I know the Bible well enough to know that God loved some people a lot who suffered some pretty horrible things.  I don't want it, but am running to Him with it and hiding in His robe.  Plus, He has given me a husband who is Jesus to me here on earth.