Monday, October 29, 2012

"nice teeth"

After a weekend of trying to "calm down!" my lower GI system a bit (thank you corticosteroids), and then just having a good cleansing cry last night with Scott after watching "The Midwives", I am better today.

(It was just a sad show, and opened the door for what "Dr. Scott" said I had been needing to do for a while...)

Last week was ugly, but unlike the previous two treatments, this time going into days 7 - 14 after the first seven days of reeling from the chemo - I have so far - Praise God, give a shout - avoided germs and infection - making this, *day 11* a good day relatively speaking.

God bless Scott for lathering on the hand sanitizer coming home from work each day.

I am still tiptoeing, but I can finally, slowly climb a flight of stairs today and not have to lay down for thirteen minutes, so it appears my red blood cells are still making an effort even after all the hurtful things I said about them last week.

Mostly, I think God Most High has heard my cry, heard the prayers of friends, and I thank you.  I don't like to post weak things like the last post, but on the other hand, that is cancer and more than anything I hate pretense.  So, sometimes, you get it all.  But I appreciate the notes and encouragement - it meant a lot.  I have never felt that weak - that close to not being able to get out of bed.  That close to pushing my heart too hard just by going up a flight of stairs.  That close to being cell-energy-negative.

The cacophony of drugs and drug reactions and feeling raw and weak and sick and low blood cells makes for a perfect storm of depression.  I never realized this deeply how closely tied the bone marrow and cells recovery and weakness and emotional all tie together.

Thank you for praying for my low-reactive-bone-marrow as well.  

You all rock.  Thank you for caring and prayers.  God is good.  He is good in the bad, and He is good in the better.  But today I am giving ear to being open to feeling better, open to feeling God work.

***

God has so blessed me.  Even though I am walking a journey many think horrid - including my body this past week - I find others walking something much worse.  That, in some strange way, always strengthens me.  There are those that are much braver, facing much worse circumstances, and they are going on.  They are continuing to walk their journey.

Last week on Thursday when I finally worked up the finger strength to start scrolling through my phone I happened upon documentaries on the drug cartels in Mexico.  Right across our border is a world that none of us would ever intentionally enter and ever desire for our growing children.  There are few choices in Mexico - your kids grow up and go into the drug cartel, or they try to escape - but either way they have a good chance of not seeing their 30th birthdays.

I would not want to be a mother in that horrible situation and was so thankful for our choice our children have here in this land that I live.  You can argue poverty, etc, I know all that, but we are not governed by terror and fear and kidnappings and murders daily in our midst.  If my husband goes out the door to work, I don't have to worry that he might be one of the those kidnapped and abused until someone can send a ransom or find him.

It's a different world.

I read a documentary on the rape houses that are being used in the middle east to subdue and humiliate a population.  It is horror to the extreme, and yet these people are facing this daily.

There is much worse out there.

I'm not minimizing what I am going through, but it strengthens me somehow to know that there are others facing much worse, and they are still fighting somehow.  Still struggling and journeying.  Evil can stand in the path in many different forms - many different measures.

Much to pray over.

***

Chloe stayed with me Monday evening while her daddy and Popop and sister went to Home Depot.  She was quite a good little nurse.  She would come into my bedroom and lean on my bed and smile and ask me if I needed anything.  Then she told me she was going to clean the baby room, and seeing as you can barely walk through it right now mostly because there was a "grand" playtime in there recently by her and her sister, it seemed like a good idea to her and to me.  She proceeded to line the books all up on one shelf from biggest to smallest.

She came back to my room to give me updates.  She found the book we had been searching for - Dumbo!  She brought it in and practically read it to me.  She patted my arm and told me that she loved me.  I told her she was the sweetest girl I knew at that moment and she smiled.

She kept talking to me, saying things to make me "feel better".  We talked about the Lodi Library days, and going to McDonald's afterwards.   We talked about all the times I rocked her when she was a baby.  We talked about all the times I rocked Millie when she was a baby.

She didn't say anything for a bit, then smiled at me again and said "Grandmum, I love you".  Then she added "you have nice teeth".

I'm not sure why, I'm not sure if it was all she could come up with at the moment with my current circumstances - I mean there's not a lot to choose from - she can't say "nice hair", "nice makeup", "nice hat", but she smiled and patted my arm again.

Then she finished up the books, and stepped over everything else in the room to proudly proclaim her accomplishment of "cleaning the baby-room books".

I'm a little like Chloe today.  I'm looking over everything that should be ordered in my life and picked up and made to look better, but, hey, the book shelf looks darned good and I'm pretty glad to just be up and about.

If my teeth are my best feature some days, heaven help me, but that's kind of how it is today - you just pick what you can and go with it.  And smile then.





Friday, October 26, 2012

weakness and deserts

I have nothing.

There is nothing to write about except the depths of despair.  I woke up Monday morning to nothing but quiet, dead quiet.  I could hear the people on our street driving to work, I could hear someone walking a dog, but I was aware it took a good amount of energy just to pull my blankets back from my face.

On my bedside are bottles of drugs, bottles of water that I cannot open now without a pair of pliers,  a pack of cinnamon gum because I cannot stand the taste of anything else, and my phone.

The clock means nothing to me now.

In my mind Monday morning, I had stepped off another cliff and was just falling, falling not knowing where I might land in a few days time.  My blood counts are low, and I feel my body ebbing and weak and not wanting to eat doesn't help to replenish them much.

I used to think there was a bit of spunk in me, no matter what may come, but after some thorough investigation, I can find none of that in any corner of my being this past week.

We showed up bright and early Friday morning for my treatment, and I told my nurse that even though I was smiling and seemed just fine, my body had been *revulsing* a whole day before.  She said it's normal and has a name "anticipatory-nausea".  It means your body is reading the signs that it's going to be poisoned again, and sends up all kinds of flairs and warnings - aka, nausea and gagging - trying to get you to do something else, anything else rather than do that again.

My body is reacting like a two year old - wanting to warn me of obvious danger but with no idea on  causes or effects or how to avoid it.  It holds my hand and pleads with me to go somewhere with it away from all this - anywhere - just walk away.

It didn't quite work that way.

***

I switched back to steroids for three days after this chemo round and it did seem to help some.  At least I didn't lose three whole days to mindless nothing.  Instead, I got the pleasure of mindless *being*.

They tell me the side effects of chemo are of course "cumulative", as they continue to say treatment after treatment, and the accumulation is almost doing me in.

In a word - I am depressed.  And weak to the point of not doing anything.  Anything.

For this week.  And probably next.  Then I feel better for a few days, then the "anticipatory-nausea" starts up again; then I will go back to the center-of-disease-saving-souls, get my arm banded, lay out in a bed with a port attached to an IV and a few brightly colored drugs for what will hopefully be my last treatment ever.

I pray it so.

I so shouldn't talk to people or write when I am depressed.  In fact, I can't talk without crying these last few days.  I feel so weak, my fingers barely press hard enough on the keys at times.

That is so not me, but there is no arguing with a body that cannot cope.

So, I lay in bed and wonder, where does one go that claims to be a child of God in such circumstances?  I would much rather have the garden path of life strewn with freshly raked stones and blooming flowers and crisp linens on the lawn furniture.  

Where does one's soul go when it is all battered up?  

I go back to where it is I know He has led me and meets me time and time again - the desert.

The desert is where He started me, the desert is where I am now.

If I had one wish, it is that all who want to understand pain in life would listen to this one message - it has hollowed the ground I have walked many times.  It's the message that God took His children to the Promised Land that is 70% desert.

The message I started with back in December is the same one I listened to the other night.  We are too blessed here in America to understand maybe that most of life is not easy.  We think it should be, we think it's our right, but step outside our safe borders and you learn a different truth - life is at best difficult at times, and how you travel that difficulty is of supreme importance.

The pictures of a Shepherd leading me in a desolate desert - guiding me to my daily food - guiding my footfalls so I do not stumble into the pit of no return - guiding me on life's most difficult travels.  That is the picture He leaves me with this week.

It's not your grazing field of sweet clover - it's ugly and hard.  When moving one hand to get a drink uses up your cell reserves for an hour, we are not camping out in sweet clover here folks.

As Ray says in this message, sometimes there is the gravelly stone that drives you nuts on the road and you feel your feet get bruised and injured from walking it; sometimes it's the bigger stones that are treacherous and loose and could be your undoing if you do not move carefully over them.

And sometimes, you come to a big fallen boulder in the road, and it appears there is no way around it.  

In that desert you are totally reliant on your shepherd.  It's hard, it's hot, it's beset with dangers and serpents - but that is where you meet God on the most intimate terms.  It's where you learn to rely on Him in the most intimate ways.  Each bite.  Each drink.  Each step.

I urge you to download this message and listen to it when you walk or jog or drive or have time to hear it. (sorry, no pictures folks)  Then listen again.  It's a message we don't hear all that often, and yet the Bible - from what I read of it anyways - is completely full of it.

Travelling that desert is not a lack of faith, not a lack of hope, not a lack of believing God can do miraculous things - all that is true and more.  But if you want to walk with God and if you want to not let your soul get surly and angry and stay in the depths of the pit of despair - it's a matter of learning the hardest things and believing you just found gold when all is desolate around you.

http://followtherabbi.com/uploads/assets/audio/discipleship3_908.mp3

Sunday, October 7, 2012

Beware, the sideways nurse's glance......

I remember when I started this round of chemo that I thought it would be hard, but it had to be easier than last time.  I thought it would lay me out a bit, because by nature that's what chemo loves to do to a person, but I was getting the Neulasta injection, so I should be fine.

I told all that to my chemo nurse going over the information preparing me for my next battle:  AC.  Those letters mean all kinds of things, but if you are in breast cancer treatment they mean dastardly things are going to happen to your body cell makeup.

When I told my nurse that I didn't think this go-around would be as severe, she was holding the notebook pointing at a fact with her finger and she paused and looked sideways.  That sometimes means you are trying to create something to say.  She paused a moment and said "we like the ones that have had chemo before starting this AC.  They have a really good feel for what they are in for".

I thought she was being a bit dramatic.  I have a friend who worked clear through her AC.  I have read a couple of women that made it through ok.  There are lots of things to read saying how bad it is, but I chose to believe that this one could not be as bad as the last one, ergo, I might have one bad week, but that still leaves two good weeks.

Ergo, my wimpy blood cells say otherwise - I'm in this over four weeks now, and I can maybe count four good days on four wavering fingers.  Maybe.  That includes the day I laid on the couch all day with a vibrating heating pad on my back to help with the bone pain.....

They gave me my chemo even though my blood work was quite low Friday week ago, and after the initial pre-drug "feel good" has worn off, this is the first time my head has been above water enough to even want to sit down in front of a computer.

The pre-treatment high dose steroids from the chemo carried me through till Monday morning, and after that crash I have no memory of the rest of Monday or Tuesday.  I remember Scott dropping me off to braid the twins hair for school early Monday morning, and that my fingers would not work right, then I insisted I was "fine", walked home, got into bed, and as the song says, the lights went out in Georgia folks......

Tuesday Scott called home, I was sick, couldn't find my drugs, he didn't like the way I sounded, so he headed straight home.  It wasn't pretty, he says.

Wednesday seemed a little better.  But I started a dry cough.  Thursday I had more dry cough.  Friday, I was laid out sick.  It felt like someone had taken a baby bottle brush to all of my bronchial tubes and that my esophagus was in shreds.  Each time I coughed felt like I was moving that brush up and down, up and down.

I had been using my "magic mouth wash" hoping it would turn this to the better, but started putting calls into my doctors office Friday afternoon - *before 5pm this time* - and they told me they would send me a strong antibiotic (I sounded pretty horrible on the phone - like I was a 15 pack a day smoker).  The nurse came back on the phone and mentioned that I sounded "very bronchial" - I agreed.  She said it sounded like my airways were swelling and was I having trouble breathing, and I said yes.  She said to get in the car and get there.

Suddenly flashing before my eyes were the headlines of the Columbus Dispatch last Friday in the waiting room:  "MRSA" and "OSU Researching" -- and I suddenly started the famous "karen*back*away"......

I said "I'm still breathing ok" - even though I had been kneeling over a pillow all afternoon trying to get airways open and vomiting up gunky gunk.  I had also started crying, which seemed to help somewhat loosen up and get things coming out.

Enough gore, I know.

So, after being on hold, talking, being on hold, talking, they agreed to start me on high dose antibiotics at home, and if my fever tiptoed over normal or if my airways tightened an "nth" more after starting these, I was to come down immediately.

I love those ladies.

***

The thing with chemo is that it stops all of your body's ability to make new cells.  So the fastest and most regenerating cells in your body get it the worst.  That's why your hair falls out.  That's why they are fastidious about mouth sores - your mouth is the fastest healing part of your body because it regenerates new cells faster there - unless of course you have chemo holding that door.  Then you could go weeks without a new cell being brave enough to tentatively step in and take over the damages.

They don't want you vomiting because not only does that affect your weight and overall health, but those that don't vomit don't tear up their esophagus and stomach as much - both parts of your body that has a lot to lose when they cannot regenerate new cells to heal up the tears from vomiting and chemo ulcers and such.  Your gastro track the whole way through is taking quite a beating from chemo, and the less you alarm it with doing even more damage - like vomiting and or bad, croaky coughs - the better.

My doctor is not going to like this one little bit when I see her next time.

***

So Saturday, I am better, but my body thinks that moving my big toe is one big exertion, so we know my blood cell counts are pretty much dwelling in the basement somewhere.  When I woke up at noon, I told Scott that I felt like I had been through Gettysburg and Antietam all in one week - and I mean no disrespect to soldiers - but I felt a bit battle worn, a bit shell shocked.  I couldn't even talk very much.  Scott kept talking to me and I mostly just smiled - it was the least amount of exertion.

Later in the afternoon he wrapped me up with lots of pillows and warm clothes and took me for a drive.  When we had been in the car for a while it finally hit me why this had been so important to him - it was exactly four years ago that I had done the same thing for him when he had got out of the hospital and was not doing so well.  I had driven him all over lower Ashland County in our little Prizm so he could drink in the beauty of the leaves and smell the fall air and hopefully put some health back into his bones - that's what I told him I was doing - driving to put health back into his bones - so Saturday, he held my hand and told me the air and the beauty of the leaves and the crispness in the air and him driving me - that it would put health back into my bones.

And I could barely scare up enough energy to move my lips to smile, but I did.

It was beautiful.  We even did a very slow, deliberate walk on the Pleasant Hill Dam.  And for the record, that was my total exercise for the day.

I don't think my $4,000 Neulasta Injection is holding up to it's worth.  Next time, I may ask for the amount in gold and probably come out even.  If you've not been to the bottom of the low blood cell pile, you just feel like breathing is a bonus and a workout.  It's maybe where the word lethargic comes from.  And the only thing you can do, is rest, and rest, and rest, and finally the cells start to rebuild.

Scott found today that what really helps that is homemade chicken gravy over biscuits with a side of green beans.  Easy on the whole body.

***

I've had some pretty crazy dreams all through this the past week.  I remember when I was up last night Scott asked me if I thought it was awful cold with the fan in the window, and I told him no, that "they" wanted the house cold.  He asked me who "they" were, and I told him to look in the shower.  I told him there were four of "them".

I was pretty unconcerned, but Scott was suddenly greatly concerned.

Scott is not easily spooked, but he did go look in the shower, just to be on the safe side.  When your wife is talking a little crazy, you want to make sure she isn't filling up the shower with more than just soap bubbles, maybe.

But with the house crazy cold, I was completely content with the four others in the house and snuggled down into my warm double-down blanketed bed, and dreamt.  And dreamt vividly.  It was the type of dream that is one thing, but you know that there is an undercurrent reason below it all, and I woke up crying inconsolably.

This past month, my sister had been visiting from Oregon for three weeks, caring for my mother.  With my chemo, then not doing so well, etc, etc, I only got a half hour visit in before they left.  And even then, didn't get to talk to her.

She was seventeen when I was born, and from what I understand, took over a good amount of my care and interaction as an infant and toddler.

When my younger brother was born two and a half years later, words were used towards me like "wild injun", "birds nest", "savage", as in "why she just looks like a little savage, that one" - you get the picture.

My father insisted that I had long hair, but I didn't like it brushed - it was curly and always, always full of tangles.  My mother didn't have the time nor the energy most days to fight me on it.  I remember my sister one day trying to coax me to brush my hair - she sat me down beside her on the bed and got one brush stroke in.  I wanted to be obedient because I worshiped her so, but I also didn't want to get my hair torn apart, so I moved one hop over on the bed.  She moved one hop over and said low and sweet, "well now, doesn't that look nice", just like sweet oil flowing over a rusty hinge.  She brushed another stroke, and I hopped another hop,  she hopped another hop and by the time we got around the other side of the bed I remember I had a very pretty pony tail in my hair.  I knew it was pretty because she said so the last three hops.

As my sister left my life, I cried and cried and cried with grief.  And there in her stead, was my grandmother.  She would pick me up and rock me, and rock me, and hum some songs and rock me some more.

My dream this morning was all about sometimes you don't get the best in life, sometimes you get second best or the leftovers or whatever some kind souls give you - but when I woke up I was crying because I was telling someone in my dream that "sometimes second best, is the best", and I was inconsolable because I don't think I ever told my sister that.

Not that she was second best, but that she took the time to stand in the gap for a spunky yet shy yet left alone a lot wee one.  It wasn't first choice for children, but sometimes the second choice is the best after all.

So Mary Ann, I tell you now, I am grateful for what you poured into a wee one's life when you were a working teenager yourself.  

I don't know what souls were walking about in my cold house last night, but I do know that they awakened something deep inside me that I like to forget or pretend is not there, but chemo always shreds that curtain and it's there and open and I think on it a lot at times then.

And after Scott's "pensive" looking in the shower last night, he said I should probably put my little excursion into Kaballah on hold for a bit.

I don't know.  But I do know that when I wake up and smell something from my past that was so good and sweet, or when I wake up and feel someone stroking my hair telling me how pretty it is when they had just survived an epic battle of brush and tangle - I feel it deeply and it deeply prompts me to give it forward.

I don't know what these little ones around us will ever remember. I do pray daily that they remember a warmth and gentleness and love and acceptance and the knowing that I will always, always grab their hand and ask them "how are you dear?" just as my grandmother did for me.

I remember sitting on an upstairs bed gazing out a window with Mary Ann and there were beautiful apple blossoms all over our apple tree.  I was entranced, and she smiled.  It's a short memory, but a good one.  I want the wee ones around me to remember gazing at the stars and knowing they were loved.  I want them to remember stirring in the kitchen standing on a chair and know they were loved.  I want them to remember building roads and popping with ideas of adding a zoo or adding a skyscraper or adding a farm all beside that road, and know they were loved.  

Sometimes the kind soul standing in the gap is all that is needed for a gap in time to fill another's soul.  It was done for me, and I am filled with dreams of gratefulness for it all.