Thursday, April 26, 2012

Tidbits and tears and lawns, neighbors and moms

At the cancer treatment center it is impossible not to hear what others are enduring.  Today, I heard a woman get her first treatment instructions from several people.  I heard them talk to her about starting the IV.  I heard them talk to her about the expected side effects this coming week.  I heard them talk to her about the steroid reaction (a speech I never received by the way).  I heard her friend that drove her talk too loud and too much and not letting the doctor and nurse say what they needed to say.

Then it was all quiet over there.

I got up to go to the bathroom and looked her way.  Her eyes were red and she had tears on her cheeks.

I so felt for her.  I so knew her fear.  I so wished I had a magic wand to make her life better.  I smiled and waved.

*******

Last weekend I think was the final fireworks of my last carbo treatment.  I hurt.  I was bloated again.  I could feel my organs screaming at me for loading them with this chemical and making them process it.

I became a little fearful remembering that this was how my last blood transfusion need started.  I'm glad the blood is there for me to use when needed, but I'm not so sure I want someone else's DNA parading about in my blood vessels.  It gives my imagination too many hours of pondering.

I went out for a walk.

It was a cold blustery day and I dressed for it in my pink rain coat that I now loathe because pink is all the color of breast cancer and even though I love the color pink, I don't want to see it so much right now.  And wearing that pink raincoat every time I go outside is like suddenly not saying so much anymore that "pink is such a fun color to wear in the rain", it's more like a big arrow pointing to me and announcing "there goes cancer"....

But I went for the mile walk around our street and upon looking up facing the wind saw that I was just a few steps away from our neighbor on the lake that sometimes invites us to boat with them on their pontoon boat in the summer. 

I couldn't avoid him.  I was not feeling good enough to want to stand and chat.  I just wanted to get in my walk and go back home and lay down and try to find some way to soothe the ravaged organs yelling at me.

He looked at me so kindly - my eyelashes now count four and my eyebrows count three - so I don't like to see people I haven't seen in a while and startle them, but he looked at me so kindly and asked me how I was doing.  He said he was so sorry to hear of my disease.  He said anytime I might need anything to call him.  He said that if I even needed someone to run a glass of water up to me when I am sick in bed and no one was there to do it, to call him, that he would even sit in my living room and watch some questionable movies and wait until Scott got back home.

There were tears on my cheeks unbidden.  It seems my ability to suppress my feelings coming out of my eyes is gone most days.

He did the most touching thing - we are neighbors that know each other but don't know each other - and when he saw the tears because of his kind words - he reached his finger out and wiped them away.

He touched me and just smiled at me gently.

I almost avoided that moment.

*******

Even though today we had a long drive and a longer day at the cancer treatment center that resulted in us being relieved to get treatments, making us happy, we were bushed.  Smashed. 

We stopped at Walmart on the way home.  I need to figure out how to do eyelashes.  I have watched tutorials online, but am still puzzled.  Cancer treatments and the whole day is just tiring.  But Walmart on top of that just plain shut me down and all I want to say is put me to bed for twenty years Rip Van Winkle.

Scott was tired too.  It's hard work hearing how your wife is going to be further abused.  It's even more-so to watch it.  And he has every time.  Then I make him help me sneak into a store, avoid all the germs I can and ask him which eyelashes look more real.

It was a lot.

We pulled down our street and he is fussing a little about all the work he has to do the next couple of days.  Laundry, some cleaning, dishes, cooking for a fussy stomach, -- and school.  Although he did not complain about it, nursing is on that list as well.  And counselor.

We pulled down our street while he is listing this and I am half asleep still in some injectable-Benadryl-doze-land, and see that our lawn has been mowed.

The grass that he pampers and babies and spends more money on than should be constitutionally allowed; his first concern every spring and last concern each fall.  His grass.  His lawn.

It's all done.  He doesn't have to worry about that or add it to his list.  

It looks awesome.  And it's done.  One less thing he has to do while I slug it out with the chemo drugs this week.

We cannot thank you enough Fred.  Not only are you successful in life and business, but as a lasting, good friend.

And I know if you were sitting beside me right now you would want to wipe the tears off of my cheeks as well. 

*******

Our doorbell rang yesterday.  Scott opened it and our son's mother in law, Lisa, was standing there.  We are friends - I love her.  We have shared two precious little girls for almost five years now and we have sometimes supported each other and helped each other out with child care duties and it is so good to know that someone else other than their parents loves those little girls as much as we do. 

I was upstairs thinking I should get properly clothed before going down and heard some bits and pieces.

She handed Scott a bag from Grandpa's Cheese Barn that had two different types of Sweeties chocolates in it and other goodies.   Then she said to "tell Karen she was praying for her, and loved her and was hoping all the best for her." 

Then I heard Scott say good bye and close the door.  I had missed her, but so treasured her gift and her words.  

I looked in the mirror and saw those feelings falling over my cheeks again. 

*******

My woeful lack of tears for fifty years seems to have been ripped from my person and replaced with the ability to cry when my brain says I should.  They just show up and I could not stop them anymore than I could stop the feelings that have been long suppressed and pushed aside too many times - feelings of honest gratitude; feelings of honest blessing; feelings of honest humility; feelings of love.  Real love being poured out on us.

I see friends that I haven't seen for so long, and I cry, it is so good to see them and it is the most natural response suddenly.

But what makes the tears fall more than anything has been realizing kindnesses and the effort and love and cost that is behind those kindnesses bestowed on us.  It is humbling.  But more than that, it is a deep feeling of wonderment that has never been available before my eyes before in such quantity. 

The Rabbi I listen to reminded me of a verse last week in Psalms where it says God lists every tear and records it and even stores it in a bottle, depending on which translation you use.

I like that.  If these tears are my cleansing, then God has them stored.  And listed. 

And they have been so cleansing.  Cleaning out fifty years of "stuff" that should have been kept clean all along.  That should have been sensed and felt all along.  Things that should never have been pushed aside, and my innards knew that, but I would not usually let the "cleansing" happen.  What was not allowed for so long cannot be stopped now.

*******

We picked up my mom and took her to Easter with us.  It is difficult for her to navigate steps and get into a car.  It is difficult for her walk.  It is difficult for her, like me, to feel at times.

She had a great time watching her great-grand-children play and seek out their eggs.  She had a great time interacting with her grand-babies - my kids - that she rocked and sang to and loved on for years.  We all know that Scotty is her favorite of sorts, and she just shines when he and his sisters lean down and hug her and tell her out loud that they love her.

They do something their mother cannot - we never did that.

When we dropped her off she was standing in my brother's kitchen and Scott and I turned to leave after chatting a bit, and Scott said out loud - go give your mom a hug.

I did.  And the tears were on her cheeks and her eyes were full of me and she said that she used to put my "lots of hair" when I was a baby in a curl on top of my head.  She mourns so that I am going through this, and my husband can see better than me that she needed my touch.  My physical touch.

She goes in for surgery tomorrow to repair a hernia from her surgery last year.  It about killed me to release her into a surgery last year that I wasn't sure her frail body would be ok with.  And I remember just sitting there with her and for the first time in a long time I wept openly and told her I was so sorry for all of this.  And everything else.

Now, again, the tears are on my cheeks thinking of her.  I wish a lot of things for her both past and present, but most of all I wish her an easy heart.  A heart not so heavy with regrets and sadness. 


I hope she knows that God has her tears all stored and listed.  It is somehow healing. 





Wednesday, April 25, 2012

Nurses are A*W*E*S*O*M*E part 2

Hold on America, Karen is back on steroids for the next 24 hours.  My brain is working faster this evening than it has in the previous ten years.  Twelve years.  I have not been this in-tune and keen and watchful and stealthy with my surroundings and reactions since I had teenagers at home. 

We got home from the OSU-Stephanie Speilman Center after 5pm today.  It was a pretty incredible day, and I have to attribute it to the prayers that you folks are putting up on my behalf.

And one awesome nurse.  

After being refused chemo treatment last week with low blood work, Dr. M and Julie suggested that I try a lab closer to home that could test me so we would not have to make the long drive and they wouldn't have to refuse me again and -- and *maybe see me cry* again, I suspect.  A simple CBC, complete blood count - is all I need, so I went to the local facility yesterday.

After a few trials at the outside facility, they finally did call me with the blood work results late afternoon, and though they did not have the "grans, absolute" formula on their sheet that tells me everything I need to know about getting a treatment or not - what she told me about my white blood cells was super!!  They had really jumped and I was pretty amazed.  And my hemoglobin instead of stepping down more, which it should have been doing being fourteen days out from my last carbo treatment -- my hemoglobin and platelets, bless them, went up

Talk about a 'dark-horse- candidate succeeding where everyone thought they were doomed.  

That is a miracle.  Your red blood cells are pooped out and just down right waving a white flag two weeks after carbo.  Especially mine it appears.  With missing treatment last week, they should have held their own and not stepped down too much more, but this is miraculous -- mine stepped up

Everyone was all smiles over that one. 

My white blood cells on the other hand, seem to be reacting to the IV Taxal that I get every week.  Or that I am supposed to get every week.  'They' have been telling me the last two weeks, the longer you are in chemo, the more you get used to it, but, on the other hand, the more your body starts to break down and react.  For example, there is more chance now for a more severe carbo reaction a couple of days after receiving it.  And it appears, sneaky Taxal is on that bus as well. 

I keep telling the nurses to please, please not say such things in the hearing of my body - my body hears it, hugs it close - and away we go to whatever they warn me about. 

Actually, they know their stuff, and they know pretty much when to warn you, so I am grateful.  If they would have told me these things at the first treatment that I am hearing now and accept just as more information - I would have freaked.  Freaked out.  

But I thought that out of the three chemo drugs I am taking, that Taxal and I were the closest of friends.  At least as friendly as you can be with chemo that is.   Obviously, Taxal has some old Soviet-Russian components to it.  It acted like my friend, but in the end, is quickly becoming the more long lasting, devastating hurt.

And today, it seems Taxal has been undermining my wbc's fourteen days out as well.

*******

Abby was my first nurse that I had at the Stephanie Spielman Center after I was done with the study part at OSU-James Cancer campus.  She was pretty awesome then and even more-so today.  This was the first nurse that I have had twice and she remembered most of what we talked about over two months ago. 

I, on the other hand, did not.  

The level of knowledge that these nurses have within the James Cancer Center, is pretty spectacular.  And then they openly, and thoroughly share it with the patients.   They know every cancer they are treating upside down, inside out and flipped over.  They know every treatment being given.  They even know most of the ins and outs of every study being conducted there - and what they don't know they pursue and get answers.

That's a lot of knowing and brain cell usage, folks.  

She had a trainee shadowing her today, and her training was going to take over six months.  I believe it. 

After my blood work's spectacular showing yesterday, it was too low this morning.  From 1pm yesterday, to 9am this morning, my blood results did a huge flip-flop.

Perhaps I am being inundated with too many campaign commercials these days, and my wbc's decided to jump on board the finger pointing 'flip-flop-train'..   

But I was too low on my wbc's to get chemo again.  We were quite surprised - how could it drop that much in that amount of time???  Julie said that happens sometimes with outside labs. 

But by the time it was all said and done, my wbc's were too low for chemo, even though my red blood cells had done some herculean work this past week. 

They all left the room, and I didn't cry, didn't get mad, I guess I have reached some level of acceptance of the state of my blood on some days. 

Abby put her head back in the door and with a twinkle of hope in her eye, told us not to pack up yet. 

We waited, I played on my cell phone, Scott looked out the window, and then Abby flew in again.  She said "I asked them to try a blood draw from your arm this time, not your port".  My port is flushed each time it is accessed with saline solution and a blood thinner to avoid clotting that close to your heart and jugular leading directly to your brain and all.  She wondered if that was influencing some of my results.   

Sweet girl that I love.  Brilliant girl. 

She hit a vein easily, pulled out the blood which I was praying over, and left the room. 

We waited some more.  Then Abby came back in with her trainee, with Julie and her trainee, and what we had was a whole entourage getting off the campaign bus smiling really big. 

Julie sat down at the desk and looked over the new blood results on the screen.  She looked at me and said "you might just squeak in".  They left the room to use the calculator to be sure - and after a while - came back in - I had won the nomination.

She said "you have squeaked in being at 1,000.012".  I have to be at least 1,000 on my grans absolute formula, and here I was with point - point .012 to spare. 

Hoo-ah and ticker-tape parades.   

And all because Abby went that extra mile for me.  Wednesdays are their busiest day.  Once, they told me that 10 chemo nurses were processing 53 chemo treatments that day.  That is pretty outstanding considering the amount of time they spend with each patient.  I was there from 9am to 2:45pm today. 

She was awesome and saved us another wearisome trip to Columbus on Friday.  Don't get me wrong - I am so, so thankful that facility is there.  I love it and what they do and how they do it.  But the travel part and "hanging-out" part is wearisome and fatigues my already depleted cells sometimes.  Her "extra-mile" that she walked with me today saved me travel-fatigue, exposure, time, money, and saved Scott from another frazzled morning on red-break-light-mostly-stopped 315.  He might have a stroke on there one day.

She also gave me a very helpful hint that is kind of a no-brainer if you think on it - but very useful.  Next time I use an outside lab, have them use the veins in my arm and "save" the port for her.  Yeah, we all should have thought of that one, but she is the one that was thinking about how to make my life better.  My healing work.  My chances improve on that poll.    

God in heaven shined His face on us today.  And we cannot be more grateful.  He sent us an awesome nurse again that went to bat for me, and we were blessed. 

Thank you for your prayers.  God is showing me an ever unrolling process of how His kingdom works here on earth.  I will never understand it all, but He keeps showing me and it impacts me, and I feel your prayers going to heaven on my behalf. 

And I am on my face, on the ground, thankful. 

*******

Our House Church went through Matthew last year and it clinks around in my brain still all that we learned.  I don't know what Abby's faith is, but she is obviously living these verses, all because she wants what is best for me -- someone she may not see again, someone she did everything medically correct for today and could have walked away from my room that first hour satisfied.

But she walked that extra mile for me.  Because that's who she is.  

Heal the sick, raise the dead, cleanse those who have leprosy, drive out demons. Freely you have received; freely give.  Matthew 10:8

If anyone forces you to go one mile, go with them two miles. Give to the one who asks you, and do not turn away from the one who wants to borrow from you.  Matthew 5:41-42
 
 
For the record, I didn't even ask her.   
 
 
******* 
 
Last week, when we got home in the afternoon, I purposely put my phone on the table out of hearing range, jotted a short note of my chemo-reject, and went to get ready to go outside.  I put on my doctor sanctioned long, thick rubber gloves, chemo sun-hat, long sleeved shirt, thick jeans and pulled some weeds.  That has been therapy for me for years, and still works.   
 
Scott was out there with me.  It was great to be working a little again, and it was great to be out there doing what we love together.  
 
I couldn't talk about it anymore.  
 
And Scott couldn't either.  Every time I turned around he was sitting down and wiping a tear off of his face.  I would sit down with him and rest.  We would talk about my chemo, about the garden, plan some transplants and some improvements, then we would start up again.  Then sit down again.  Grieving it all on a beautiful sunny day, with perennials blooming much earlier than they should, making it beautiful to dwell on beyond expectation. 
 
He was processing it all with great difficulty.  It was a hard day but it was a good day.  We love to putter in the garden together, and it's something we have done for years - together.   
 
It is somewhat, somehow, healing.  
 
All that to say, on that tornadic day, I think I saw an angel last week in the waiting room before my world started to revolve.  When I get to heaven, whatever she/it was, I want to thank Him at His feet.  It's a long story for another day, and I will tell it maybe, but all during that turbulent day I still cried when they told me the results and the subsequent chemo refusal, but there was a calm in my core.  In my soul.   
 
She turned and touched me and whispered something to me, and I know it touched my soul deeply, suddenly and intimately and I could not grasp it entirely, but it was light and calm before the darkness approached.  
 
Somebody is praying great things over that place down there.  And praying some great things over us.  And God is moving and I still don't know what His ultimate plan is, but I know that He is prompting me on the journey.   

And I know my red blood cells did something this past week that they were not supposed to be able to do. 

I got this from a friend this week who has gone through some seriously scary and painful medical issues that were beyond my comprehension.  I had told her that sometimes the tears just came - they were not from depression; not anger or fear sometimes, even though sometimes they are; but they just seemed somehow cleansing.  A lifetime of cleansing seeping out of my tear ducts unawares. 

She answered: 

This week I pray that you will have an awesome week...not just better,but awesome..God wants to pour out his love on you and Scott!! Tears are very therapeutic..and emptying...I remember when I was in a hospital (can't remember which one..some of it is a blur) and I was so wanting for the onslaught to be over..it was one barrage after another...My husband brought to mind the story of Jesus calming the storm when they were on a boat.."ENOUGH" he said and the wind and waves ceased..I wanted Him to do that again....I pictured that over in my mind..knowing He is able...He is Awesome!!  We are His children and He does love and carry us!! So expect great things this week..Go in His power..wow...

And that is what has happened this past week - there have been some horrible storms, but with encouragement, I am envisioning a Savior that I follow and I envision Him shouting at it all "ENOUGH"!!   And I am blessed beyond words and maybe met an angel to boot. 

What kind of a God is that? 

I am beginning to believe something that I have known, and believed and even taught to others - but I am beginning to 'know' on a different level what kind of a God we have - and that He listens to others on my behalf is not something I can put my arms around again and again.  I don't know the ending destination of this journey, but I am beginning to know better a God that truly does watch you be thrown into the fiery furnace and truly does hear. 

And truly, walks in that furnace with us.  When people around us count how many were thrown into that furnace, I hope they see an additional "one" walking with us.**

There are others that are walking an even hotter fire than I this week, so I pray for them.  Because He is walking with me, I pray that the flames may not overtake them as well, that He walks in there with them.

And if you think that note was awesome, and it was, you should meet the House Church people behind us that God himself lined up.  And old friends coming to shelter us, guard us, pray over us and help us out so we will have a place to live this time next year.  I'd love to have you meet two earnest young men that pray a prayer of healing over us.  You should see the cards I get in the mail - some unsigned and playful, giving us something to think about, investigate, wonder over.  Some, touching my soul with their outpouring of love and words.

It has been overwhelming, because I of all people, did not expect this.  God giving me nurses that are beyond their pay-levels.  God providing for us in ways that are humbling, yet full of wonderment.  God lining up people to be that encouragement, that day, to enable us to take one more step, to go on and continue. 

******

Daniel 3: 

**Then Nebuchadnezzar was furious with Shadrach, Meshach and Abednego, and his attitude toward them changed. He ordered the furnace heated seven times hotter than usual and commanded some of the strongest soldiers in his army to tie up Shadrach, Meshach and Abednego and throw them into the blazing furnace.  So these men, wearing their robes, trousers, turbans and other clothes, were bound and thrown into the blazing furnace.  The king’s command was so urgent and the furnace so hot that the flames of the fire killed the soldiers who took up Shadrach, Meshach and Abednego, and these three men, firmly tied, fell into the blazing furnace.

Then King Nebuchadnezzar leaped to his feet in amazement and asked his advisers, “Weren’t there three men that we tied up and threw into the fire?”

They replied, “Certainly, Your Majesty.”


He said, “Look! I see four men walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods.

Nebuchadnezzar then approached the opening of the blazing furnace and shouted, “Shadrach, Meshach and Abednego, servants of the Most High God, come out! Come here!”

So Shadrach, Meshach and Abednego came out of the fire, and the satraps, prefects, governors and royal advisers crowded around them. They saw that the fire had not harmed their bodies, nor was a hair of their heads singed; their robes were not scorched, and there was no smell of fire on them.

Then Nebuchadnezzar said, “Praise be to the God of Shadrach, Meshach and Abednego, who has sent his angel and rescued his servants! They trusted in him and defied the king’s command and were willing to give up their lives rather than serve or worship any god except their own God. Therefore I decree that the people of any nation or language who say anything against the God of Shadrach, Meshach and Abednego be cut into pieces and their houses be turned into piles of rubble, for no other god can save in this way.”

*******

Whether we walk out of the fire or not, I pray we live our lives in ways that make people drop their jaw at times and see the "One" walking in the midst of it with us.  I'm not quite there yet, but He still is walking it with me.

*******



And right now, I'm guessing you all are very thankful that I didn't get the nurse that gives the steroids too fast helping my brain stay awake all night and recall butchering turkeys and other frightful events in my life. 


Tuesday, April 24, 2012

A note of concern........

I am driving today.   Scott is hugely concerned. 

The last time I drove was the first week in February.  That is also the last time I made it into work coincidentally. 

As they have decreased my dose of some of the chemo drugs, my vision is better this week.  My brain and comprehension have improved.  I have even been able to finally read some - which has been amazingly pleasurable, I might add.

On the other hand, after talking to both of my daughters yesterday on the phone, my hearing seems somewhat sketchy still.  I'm guessing I said "WHAT?" maybe 849 times.  That can be attributed to the chemo, but I'm guessing it's more of a 'karen-meets-fifty' thing.

And in case you wonder, they did laugh.  

I am still just a little clutzy, a little walking into doorposts for some reason, so we are a little bit anxious to see how this whole driving thing works out. 

And my reflexes have not had a test like this for while...... Um yeah, I will be that car on the road that is stopped one half mile behind the amish buggy, waiting. 

*******

The plan for this week is to have my blood drawn somewhere closer to home that knows how to access my port.  Samaritan Hospital is capable, but I cannot tell you the frenzy that my brain is in suddenly realizing I am not walking into a cancer center that is concerned with  little else than protecting their patients from germs.  And I am sure that Samaritan is as well, but they have all kinds of patients there - not just cancer patients avoiding germs like cats avoid large bodies of water.  For all I know there could be a flesh eating bacteria patient in the next room.  And those germs do jump - I have flipped through a few tv channels the last couple of months. 

I am inclined to carry my hand sanitizer with me.  I have become the worst germ-a-phobe in Ashland County.  Card carrying alcoholics do better walking past a bar.  

But, the idea is to get my blood tested close to home today - if it's good, I travel to Columbus to get my chemo tomorrow.  If it's not, I go back in Thursday and have it tested again, then hopefully, get chemo on Friday, so I will not miss a whole week again. 

And if you wonder, I have not had a flash in the sky answer from God about which path to choose chemo-wise, but I am leaning towards staying in the study, with reasons that might be better talked about another day. 

*******

My friend long ago taught an "aerobics class" as we called heavy breathing exercise then, and as most of us out-of-shapers in the class were basically dying with lack of lung space gasping for needed oxygen, she was smiling and yelling and coaching us on.  She used some tunes for the workouts that are still enblazened in my brain and every time I do anything that involves more than the usual oxygen intake, I hear them again. 

I am using several of them now for my walks or "work-outs" - if you want to call them that - and they are listed in my 'youtube-tunes-list' as my "fighter" songs.   (don't be too impressed - I usually pass out on the couch for four hours afterwards.  But, if I can do nothing else for my body, my cells will be oxygenated.)

Some days, I'm not sure I am going to make it for twenty minutes.  Some days, I'm not sure I am going to make it for two minutes.  Some days, I am angry when I hear this song.  Some days, I don't believe the words.  But it always, makes me keep going - at least for the three minutes and twenty-eight seconds that the song is playing. 

And it keeps playing over and over in my brain. 

This is quite a blast from the past if you will. Go ahead, don't be shy - turn it up a little. (sorry about the video pics - it was the 80s afterall...)

But the words, the words of this song -- "We're surrounded by His love and guarded by His power.....until the battle's over"......







And you know I do not believe that we are given easy lives - I don't take that from the song - that "hey, any battle that comes along, we are going to win, ya'all - Yay!".   And you also know I don't like some of the North American church attitude about "Christ on our side", snub your neighbors - your side is bad.  But I do take this for a good "marching" song for the battle.  No matter what or where or why, with the cloud of the Lord God Almighty before us, we go.  To the battle, to the fight, to the journey, to the end.   


This songs to all the people

With light in their hearts

And love in their eyes.

You don't have to worry

When the mountains seem of infinite size.



There is one who goes before you to calm the sea.

There's a king who leads his people to victory.



We are Destined to Win

We're surrounded by his Love

And guarded by his power.

Destined to Win

Following the Lord until the battles over.

We are Destined to Win



We all get discouraged

When the pressures of life start weighing us down

We've learned that in his footsteps

Crosses in life must precede the crowns.



There is one who goes before you

To calm the sea.

There's a king who leads his people to victory.



We are Destined to Win

We're surrounded by his Love

And guarded by his power.

Destined to Win

Following the Lord until the battles over.

We are Destined to Win



We've got to remember

It's our destiny to win the end

With Christ on our side

We are Destined to Win.



We are Destined to Win

We're surrounded by his Love

And guarded by his power.

Destined to Win

Following the Lord until the battles over.

Destined to Win



We're surrounded by his Love

And guarded by his power.

Destined to Win

Following the Lord until the battles over.


We are Destined to Win


(and yeah, you can double check me, but I hate misquoted Scripture, and I think, think, that Jesus did not go before them and calm the sea.  He calmed it while they were in the midst of the storm, but it's still a worthy song, eh?) 



Monday, April 23, 2012

How it all started.......



I was called for the confirmation on my mammogram appointment and the woman on the other end of the phone insisted that if I were feeling another lump, that I needed a "diagnostic" mammogram, not the routine.

She was maybe more concerned than I was.  I will be forever indebted to her.  She called my doctor, made the change of test request, change of location, and bumped up my scheduled appointment time.  Because this was the week before Christmas, what she did was nothing short of being directed by Providence.  She could have easily put me off two more weeks.  Or longer. 

I don't know who she was.

***

The lady doing the mammogram was pretty rough on me.  I have never hurt after a mammogram like that.  But she seemed to know as soon as I showed her the lumps, and she knew she had to get the best pictures possible for me.

After she saw the developed mammogram, she took me immediately into an ultrasound room and started an ultrasound.  I was watching the screen and saw 'it', then 'them', easily and immediately.

Then she left and brought back the radiologist.

He did his own ultrasound and then did it again.  He was in a hurry, but I could see in his eyes that he knew what he was seeing.

They were ugly and black.

And I was strangely calm, watching and talking the whole time trying to get any information I could from them. 

I said "that doesn't look so good".  He told me I had at least two lesions that he was seeing and that it seemed to be in the same lymph node chain.

I asked him if that was better or worse.

***

That was all on a Tuesday afternoon.  Wednesday, I spent trying to get the official results from my obgyn.  Her nurse communicated to me that although my doctor was too busy to talk with me at the time, she wanted me to get an appointment with a surgeon as soon as possible for a biopsy.   I tried the surgeons she suggested, but all were full and shutting down for Christmas and scheduling two weeks into January.

I knew what I had seen on the ultrasound screen the afternoon before, and I knew "that" was not there when I had seen my obgyn for my usual appointment in June.  It was not there in August when I had her examine a warm hard lump in my arm pit.  She had done a pretty thorough exam both times.

I was a bit taken aback with the speed and seeming ferocity of this growth. 

The day was rapidly spent in waiting and phone calls.  Phone calls and waiting.  I was texting with a friend and as a favor she was able  to get me in with her doctor for a biopsy in another hospital within two days.  Her doctor was willing to forgo all of the usual round of beginning consult visits, etc, and just do the biopsy straight up.  I called my obgyn and asked them to forward the records. 

It was "Library Wednesdays", so the twins were here, although we did not go to the library that day.  We read books and laid down for a nap, then the personal call from my obgyn came in.  She said she would rather I stay with her surgeons in Medina and she would try to get me in herself.  I told her that I understood that all I was needing was a needle punch biopsy done under ultrasound, and that as long as I could get that done quickly and collect the results, I could be on my way to wherever I needed to go. 

We went back and forth a little bit.  I wanted speed and a diagnosis, alarmed at how fast this had grown.  I was familiar with needle punch biopsies - both on the animal and human side, having had a couple on my thyroid.  You go in, get it done, and get the results.  I didn't understand her reluctance for me to go with the fastest available opening.

She agreed that "this was growing like wildfire", but wanted me to schedule with a surgeon first.  I hedged.  Finally she said "Karen, I have your pictures in front of me and it doesn't look good.  You need to develop a good relationship with a good surgeon - you are going to need one."

She continued saying what no one was wanting to say over the phone up to that point.  "These look pretty nasty - you have cancer." 

And that was how I heard that word for the first time ascribed to my person.

***

My son Scott walked in shortly thereafter to pick up the sleeping girls.  He caught me - I was wanting to wait - especially with it being Christmas - to have a definite diagnosis in hand before I told anyone.  What if this was just a 'scare' - it happens all the time, right?

But he caught me with red eyes, and the shock of it all.  He is pretty awesome in a crisis -- he could tell I had been crying when he came in, and I told him I was just upset, we would talk more next week, and he said it was all kind of out of the bag here, he had glanced at my notes on the desk, so I just told him.

He gave me a big hug and told me I was going to be ok.  His strength made me feel instantly better. Plus, we are kind of two peas in a pod when it comes to thinking out diagnosis, the best approach, the best chances, etc.  We can talk like that and it's good to be clinical and step back and look the situation over. 

Then he left with the girls, and I was alone again before Scott got home.  I didn't know how to say it to him.  I didn't know how to tell him that the happiest time in our lives was about to be shaken to its foundation again.  I didn't know how to dump this stress on him without causing him physical distress.

He walked in the door; he called out my name, and I just started to cry.  He hugged me for a long time. 

***

I had called my daughters early that morning and told them I was sending them an email.  As much as I didn't want to drop this on them over the phone, and just before Christmas, I had no choice.  Their brother knew and he thought they should know and would want to know.  Because I was missing work, word was leaking out.

But I didn't want to drop this on them until I had the biopsy results in hand with certain black and white words.  Everyone was getting ready for the big holiday - finishing up shopping, wrapping, baking; generally being happy.  The granddaughters were beyond ecstatic and filled with glee.

This would be such a sudden, dark cloud. 

I talked to Kristi on her way to work - which was cruel - and I could hardly get the word out.

"Cancer".  "My doctor thought it might be cancer."  I tried to be strong and not so concerned, but we both cried.  She just kept saying "oh mom, oh mom". 

At that time, I impressed on her it was "looks like".  It was "we don't know anything for sure yet".

Then I called Heidi.  I especially hated telling her - she had been through so much already - and yet here was more.  We cried.  I could hear the fear in her voice - she didn't want someone else to go through the deep waters she had just tread. 

Our family had seemed to already have had its full share of medical misery.  But in the harbor was a boatload more shipping in from the shores of Haedes.

***

My friend miraculously got me in for the biopsy on Thursday.  I had thought about little else.  She thought maybe the doctor doing the biopsy was leaning away from it being cancer and maybe I might just have some odd cysts.

It seemed like I was given a short reprieve.  Maybe the biopsy would not show what we thought.  I didn't believe it, but my mind was warming up to the idea that maybe it was just some type of odd cysts.   I told my kids that and they were relieved.

And we all felt better celebrating the holiday. 

***

Then it all came crashing in the following Wednesday morning.  Because of the holidays, the labs were slow.   The biopsy results were supposed to be in on Tuesday.  We made plans to go down to Heidi's and stay overnight that evening pending "the phone call".  We called and waited and called and waited and finally left home, thinking they would call as we drove.

No call.  We did a little shopping, trying to wait for the phone call before we went to their house.  I sat in Barnes and Noble front window at Polaris and waited until the promised call never came in before 5pm.  So we thought maybe that was a good sign - if it was bad news, they would have been sure to call back quicker.  We went to Heidi's house and had a good evening.

My doctor called with the biopsy report confirmation promptly at 8:18am the next morning.  It was not cysts.  It was metastatic cancer. 

I didn't want that there.  I didn't want that dark shadow anywhere, but not there, please.

***

Wes made up his awesome oatmeal, and we talked candidly about it all.  Then, I got on the phone.

I talked with my family doctor about options of where to seek treatment.  I talked to my obgyn.  On my own with the ones I had talked to, I had narrowed my options to two places:  University Hospitals in Cleveland or James Cancer Center in Columbus.  I had been to the OSU medical facility with my daughter's surgery the previous year.

I called and they were able to get me in the following week on January 4th.

***

Somehow, we had an impromptu party that night at Heidi and Wes'.  Scotty and Leila came down with the twins.  Kristi and Cal came over with Evelyn.  We bowled on the WII.  I almost won.  

The grand kids shouted and laughed and were having the best of times.  We ordered food in.  It was the best-worst night ever.

We talked about it openly, but we had fun and didn't let it define us.  They wanted to be there for me and I needed them to be there for me.

We have some pretty awesome kids.  They have married some pretty awesome people.  We are so blessed.

We packed up late and drove home.  Then we laid awake for a long time savoring the evening and grasping it tight and then cried some more.

***

WHAT I SAID:  

This is part of the email I sent to my kids that first day. 


Hey Loveys,

This is certainly not something I wanted to put into an email.  I wanted to come down to Columbus today to tell you this - but I am tied to a phone.  It's too early to call now and after 8am I need to have my phone free.  
...(then I included some of the medical info already stated above)...  

I was waiting to tell you because I didn't want Christmas to be the time of year that you would remember every year when you got that "bad news".  (New Years, on the other hand, is on its own.)  Your brother said I needed to tell you both, that if it were him, he would rather know but I was still wanting to wait.

I am so sorry loves.  I know you are old enough that you can do this process very well, but on the other hand, I just didn't want the cloud hanging over you this weekend until I was more certain of what I am dealing with.  And by the way - we still are not certain until we get the biopsy back....

I have spent a couple of months walking through the prophets again.  I can't help myself - I love them.  I had read Jeremiah, my main man, last fall and had just finished Ezekiel, read through Hebrews because you have to, because it is all tied together so nicely, then decided to continue with Daniel.  I had just finished the first 6 chapters again - the option Daniel chose to live a life set apart and holy - the 3 young men thrown into a fiery furnace - the lion's den -- all of them jumped out at me again.  While this was all happening the last couple of days, it was rolling around in my brain - I am not as strong as they were, but am hoping, praying, that my response will be the same as Shadrach, Meshach and Abednego -- that I will say to the God of heaven and those evils that are trying to overtake me:  

 16 Shadrach, Meshach and Abednego replied to him, “King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. 17 If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us  from Your Majesty’s hand. 18 But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.” 

I've lived long enough to say, I don't want this, I don't want this, I don't want this, but if I must my first response cannot be anger at God nor hurt feelings of Him not protecting me; instead I know whatever it is that this is about, I must say I will face this furnace and if He saves me wonderful; if not it is still good.  He has already given me more than I could ever have hoped for or wanted and if I get more, I will be grateful.  

I love you all deeply and want you to know that if this all ends up simple - great.  If it's not, I know a God that walks in the fiery furnace with you.  I have a friend who is begging a co-worker to help me out.  And most important to me, I have three children that do right, live upright lives and honor their God - all on different levels, different ways, but it is true.  

And the more you walk it, study it, believe it, pray it, the more you have when things like this happen. 

It's still hard.  But everyone in their life at some point has to look into that furnace and everyone better have a speech prepared for that moment.  I watched Kristi and Heidi and Scotty and your dad all face enormous odds and pain and demons from the pit of hell, and I guess my thinking is yeah I'm sad, I'm scared, I'm weepy at times, but if they all faced the furnace, walked in, and walked out, I can do no less. 

***
That's what I said.  
***
WHAT THEY SAID:  

the ugly
the ugly is difficult to talk about because #1 it's about my mom & not me & #2 it's heart breaking. if you know anything about my parents, you know they have made it through all layers & types of hell as a married couple--anything the ugliness of sin can muster to sling at them, well, it has been slung, but sort of in an a-typical way. no one is an addict or abuser or cheater--the shit they walk through together is more created by others, circumstances of life. they are nearly a powerhouse of a couple, still laughing at each others jokes, hugging (my parents have hardly EVER kissed a peck to each other in front of their kids), trying their darnedest to beat each other on the wii... but they have made it to their 50's, a decade that we all celebrate for them because they get to enjoy vacations & grandchildren & adult children who still love & respect them, jobs they enjoy. & they still will, but now they get to go through this shit together: cancer.

& now please pardon my horrible, sailor like language. (as most folks except maybe christine or holli or kristi may know, when angry & before the vineyard, i knew how to swear with the best of the world's best cussers...so be prepared!)

the story goes like this: my mom had noticed some swollen lymph nodes, went to the doctor, who mostly brushed it off. then she found a breast lump in august & a mammogram was scheduled for late january. last week she found another breast lump. her doctor did some scans & declared it cancerous. then she was able to get into a local hospital to have a biopsy, but they said they were more optimistic it was not necessarily cancer.

that was last week. it was a horrible few days. i cried nearly an entire day. so that's why, on christmas eve, i released some stress via a not so great method, but effective! but we weren't certain it was cancer, so we were all optimistic.

tuesday night my parents spent the night & we played wii, then finished the night by watching the end of a documentary on theodore roosevelt (the gerwig-gerbicks know how to be rock stars). the next morning my mom got the news we all didn't want to hear, the cancer news. she is one of the strongest women i know. if anyone can make it through this, it's her. i mean, she nearly beat all of us in wii bowling! she had almost the youngest age in wii fit! (i was 64! WTF?!). my sister wrote something like 'stop all the clocks' & that's for real. it hurts in a way that most things never can--but somehow i know she will have strength like no one else. 
***
And the last say:  (copied from Kristi's blog  http://justcallmelilybriscoe.wordpress.com/?s=stop+the+clocks&submit=Search

Stop All the Clocks

22 Dec My mom admits that she’s not a great communicator; she prefers to write what she wants to say.  I’ve learned a lot about her through written communication and though I yearn for a more intimate relationship with my mom, I am the same way.  I write what I want to say.  Writing is organized and can be edited and it helps my brain to settle and focus.  The written word has weight and carries something of the eternal with it; the written word is participation in the dialogue of humanity.  It is what’s left.
Writing instead of vocalizing is also distance.  My self, my heart once removed scratched onto white space.  It’s easier for me to write than to speak; this white space a place to put my self and my say.
That said, not only do I not know how to say this, but I don’t know how to write this.  When my mom called this morning,  she  could not say the word either.  But she called and we spoke to each other and wept.  My mom told me what it was. My mom has cancer.
There are the words, there.  There.  For all their distance and for all the white space surrounding them and holding them and bearing them up, the words are not distant enough and it hurts and I can’t say anymore.
Instead, this is what others have said in their grief:
Stop all the clocks, cut off the telephone
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
…let the mourners come.                                   Auden

Do not go gentle into that good night
Rage, rage against the dying of the light.                                     Dylan

In this world you will have trouble.  But take heart!  I have overcome the world.   Jesus

***

And that's how this journey started........

Wednesday, April 18, 2012

No again.....

My blood work was down again, so no chemo for me today......Again.

One might say my white blood cells dropped faster than than a pitcher hit with a line drive.  (we do have three channels of nothing but baseball here in this household)    

It also appears that I am now in the category called "the bottom two" within the study I am in - meaning there is only one other woman with worse blood than me.

My bone marrow for whatever reason cannot recover and do the job.  Because I am in the study I cannot get the injections to boost my white blood cell counts.  If I step out of the study being half way through it, my drug protocol would not change except that I would have to drop the study drug.  (say 'higher risk')

So we are thinking and praying for guidance and don't know what to do.

We are thankful for a few things -- when they first told me about my immunity and being careful about germs -- I kind of scoffed, but then my brain went immediately to my last low immunity year(s).  I was diagnosed with Graves disease about four years ago and had lost fifty pounds and felt pretty weak and sick before the diagnosis was made.

By then my thyroid was pretty much wildly out of control and there was some concern that my heart could be affected, so at that time it was decided that the best thing to do was to kill my thyroid with radiation.

The next couple of months were even more of a roller coaster than the previous couple of years had been, as my thyroid was trying it's darndest to live, and pumping out too much one day, then none the next day.  I would be dead beat tired either way.  But it finally gasped it's last and I started thyroid replacement therapy.

It was a long couple of years.  My body felt beat up and spent past exhaustion.  

All this to bring us to this point - while on the thyroid roller coaster I was placed on beta blockers.  My endocrinologist mentioned that this could affect my immunity some, and to be careful around germs.  The year leading up to this had been full of sore throats, strep, bladder infections, flu, respiratory anything -- if anyone had any germ anywhere on their person within 30 feet of me, it stepped up to me, introduced itself, and moved in.  If someone walked into our office and said they had been in contact with someone who was sick - I got it.  I could catch the third cousin once removed flu from anyone exposed two months before.  

This was just not me.  I am usually the "strong one" -- I didn't get chicken pox when I was little even. Maybe all of my sick days were set aside to be used up later.  I don't know...... 

So lower my immunity a bit and I was one big sick day for quite a while.  I got to the point that if I heard someone cough, I stepped back two unconscious steps.  Then went and scrubbed my hands for four minutes. 

I still do that when I hear people sneeze or cough or complain of a sore throat. My body is on automatic pilot when it hears any germ activity within three miles. 

So here we are four years down the road, and I am once again low immunity, and this is what all this sordid information was pointing to -- I've had one minor sore throat and one bladder infection that needed to be treated in the last four months.

Because I already know how often and how sick I can get when my immunity is down, this is downright miraculous.  Granted, I haven't been out of the house a whole lot, but still, I haven't caught first hand, nor second hand germ-anything.

That is *amazing*.  I'm almost afraid to say it out loud. 

I do thank God Almighty in heaven with being able to say that He has provided protection over me on this for almost four months.  

That is pretty incredible when just a few years ago, I couldn't escape a germ if my very life depended on it.  And it does this time, so again, thank you Jesus.  

*******

If you are a human adding machine, as some people are, you will realize that Scott had a knee replacement, I had Graves, Scott was seriously ill for over a year, then we slammed into cancer.  All within the last five years.

It has been a long time since we have pieced together more than two months of "feel good"......

Also in those last five years, we have had five grand babies that bless us beyond blessed; and a tutorial on how God wants us to help and love each other from some pretty great friends.  

We ask you to pray for us - we truly do not know which way to turn, which way to go with this treatment and study drug.  Only God knows, and we ask that He give us a word from Him somehow, some guidance.  He says "if any lacks wisdom, let him ask of God".  So we are. 

In the meantime, I am planning to put on my "chemo-sun-hat", go sit outside and see if I can't boss around my favorite 'lawn guy' a little bit.

It is a beautiful day. 




Tuesday, April 17, 2012

Brain Freeze, Melt, Unthawed

I feel all used up.

My fourth Carbo treatment, while not exploding all of my inward organs this time, has still done its job.  The faint bleed outs, the sickness, the weakness and the new symptom that I have been trying to avoid more than the plague - "chemo neuropathy" - seems to be trying to nestle into some nooks and crannies even though it has been made to feel most unwelcome.   

Although I have had some "tinges" and "tingles" up to this point, and some imbalance, it definitely worsened this week.  I am clumsy at times and have difficulty walking a straight line without bumping into a wall.  (Or it's more like leaning into a wall as those inebriated are prone to point out.)  It's like tipsy-drunk-walking without getting the pleasure of tasting the wine.

My toes on my right foot curl under and are painful every time I try to walk any distance.  My feet and ankles are sore and painful.  My shin bones tingle, but my doctor suspects that is maybe related more to my 'exercise regimen' - namely shin splints type of issues.   Yep, I spelled that right and you should be like, stupidly surprised. 

Which of course, brings you to the question of the day:  how pathetic is your body situation when you get shin splints for walking one to one and a half miles a day???   How pathetic is that I ask???

Actually, there hasn't been a whole lot of exercise the past week - weakness has trumped over all. 

I looked it up online - which I swore I would not do throughout all of this - but I looked it up on line because you know I forget what 'they' have told me for weeks and weeks about this - and I stumble (pardon the pun) onto this and suddenly remember why I do not look things up online.  The suggestions went something like this:

  • Protect areas where sensation is decreased (example; do not walk around without foot wear). Wear thick socks and soft soled shoes.
  • Extreme temperature changes may worsen symptoms.  
  • Wear warm clothing in cold weather.  Protect feet and hands from extreme cold.  
  • Use care when washing dishes or taking a bath or shower do not let the water get too hot.
  • Use potholders when cooking.
  • Use gloves when washing dishes, gardening.
  • Inspect skin for cuts, abrasions, burns daily, especially arms, legs, toes and fingers. 

Use care when washing dishes?????  Extreme temperature changes may worsen symptoms????  We're in menopause here folks - 'extreme' is my middle name. 

Most kindergarteners could recite this list of 'cautions'. 

I'm needing a little bit more information here internet people. (I can still drum my fingers well, in case you wonder....) 

Of most concern to me, is my brain.  I think some days I actually feel it disintegrating - which on those days makes absolute sense to me - what better organ than the brain to tell you it is rapidly rusting and breaking down, just needing an allover R2D2 makeover?

I remember reading a series of books written by a woman who was dyslexic.  I was incredulous that she could write such fascinating stories, but could not read them back to herself properly for proofing and such.

I understand that a little bit more now.  I can write, but not read so much.  I can "audio" - listen - but not watch as easily.  My thought processing has changed and that rattles me to my core.

********

So I am watching a movie yesterday because I am forcing myself to #1) read a book because it is now somehow a Mount Everest difficult achievement and I view it as 'brain exercise'; and #2) watch a movie, because it is equally somewhat difficult but maybe more comparable to crossing the Rockies with the Donner party.  There doesn't seem to be a lot of good dining material in the movie arena which might explain my great disdain for them even when healthy. 

Actually, I cheated and watched parts of two movies.  What the heck, if you count the one that was on when I woke up, that makes three.

These brain exercises have one common downfall - they make me think more than I am pondering already.  (You might guess correctly that I have not opted to watch the "Three Stooges" or "Dumb and Dumber" again; nor do I seem prone to the Elm Street or Chain Saw sagas as of now.)  

But all three of the movies all kind of had a common theme - 'what if you don't get a second chance at this thing called life'?  and I know I should avoid those types of movies and books and audios, but give it a try - it seems to be all that movie makers and book writers care about - "what have you done?", quickly followed by "what if you don't get to do it over again?"

And then the last heavy blows -- "how much are you going to regret it?" usually neatly stitched together and summed up by "how much does everyone else around you regret it?"

And with that, it seems you have a movie.  I should go to Hollywood with my little chemo-fog-brain-formula and get paid for crying out loud. 

What if you really only pass this way by once?   What if today, this day, this moment, makes a difference for eternity and you don't get a "do-over"?

What if I am the wealthy Elle magazine editor that wrote a book only using one blinking eye after being paralyzed by a stroke?  He never got to hold his somewhat neglected children again.  He never got to tell any of the three women in his life how he valued them.  

What if I am wealthy Robert Redford being forced to march through a forest to "The Clearing" and I realize that all my hard work in life meant I didn't spend my family time wisely and now it won't, can't happen because there is a bullet in the gun..... (it did seem that "wealth" gave the main characters more regrets to ponder - at least on this day in my movie-rama living room) 

Life can change in a moment and the mundane suddenly seems positively riveting.  At least I am glad to have smiled and played and give a big hug every time I changed a diaper. 

Delightfully mundane. 

So something is bumping around in what is left of my R2D2 brain, and I again, look on the internet, because you know, it would take me years to find this in a book long ago put away - but at one point in my life I had this memorized and I think it was due to my mother's prompting and somehow a teacher at Nankin Elementary seems involved as well:

I Shall Not Pass This Way Again


Through this toilsome world, alas,
Once and only once I pass, 
If a good deed I may do, 
If a kindness I may show 
To a suffering fellow man,
Let me do it while I can,
No delay for it is plain
I shall not pass this way again.  
                     Author Unknown

This was added, which I had not known or memorized previously and then forgotten: 

"The above poem was adapted from a quote from Stephen Grellet (born Etienne de Grellet du Mabillier) (1773-1855), a Quaker Missionary from France to the United States. The original quote is: 

 "I expect to pass through this world but once. Any good, therefore, that I can do or any kindness I can show to any fellow creature, let me do it now. Let me not defer or neglect it for I shall not pass this way again.""


 

********


And how to get this freakin' big square off of this page is beyond me.  So just enjoy it.....













  


Friday, April 13, 2012

funnies

I have an odd sense of humor.  Some days my little room at the cancer treatment center is the one with laughter coming out of it.  Some days, just a little bit, but still laughter.

My inner being loves laughter as much as it loves brutal honesty.

This is a little collection of mine of funny things that have been going on as of late.  Well, at least things that are postable.....

*********

During my "visit out" with the grandkids, some of them were put into "time out" - which in that household means sitting on the steps.  I went down and sat beside of poor Chloe who was crying her mournful eyes out, trying to plead a case that no judge in this nation would consider overturning, and so I sat beside her a bit, holding her hand and talking softly.

Then Addy and Millie came down and started to "sooth-chatter", bending over her and cheerfully, softly talking, trying to help her feel better.  Addy said "hey - I can tell you my new verse!"  She was a little proud of herself having memorized a verse at church that week, and she proceeded to say it:

"Jesus said 'I am the good shepherd; I know my sheep and my sheep know me.'  John 10:14"

Chloe listening, moaned and then said mournfully "why did Jesus say that?!!"  I tried not to act too startled, and I said "well........ He considers all of us to be His sheep because He is a good shepherd" -- the words were no sooner out of my mouth than she hit her fist on her knee and said "NO! NO! NO!"  Then she blurted out "I WANT TO BE A COW!!"

 ********

While my grocery list is limited the last couple of months, sometimes Scott's is even more limited.  His goes something like this:

Nathan's hot dogs
white bread (we argue over this one a lot..I sometimes watch Dr. Oz dang it.)
Bush's baked beans, all flavors
Jar of peanuts
Frozen pizza(s)
Bacon

Since his trips to the Cleveland Clinic a couple of years ago, we have been more than concerned about him eating a good diet. I have begged, pleaded and bribed him to eat more fresh vegetables and fruits - like I did over 3 months ago - and he declines everytime.

He was all over the reported study that came out last week about beans being the newest "anti-cancer" food. He loves them.

I will reluctantly give him that one.  

He brings home the bags of groceries and as he unloads them, I tell him earnestly "Scott you cannot eat those processed and high fat foods - they will give you cancer"..... Then I look at him sideways and we laugh like hyenas.

*******

I still have two towels hanging on my shower hooks.  One is for "body" - one is for "hair"...... I still use them both.......

********

We appear to have two squirrels that regularly visit our back yard bird feeders with no tails...... Just throwing that one out there as we do seem to be the house of the missing body parts....


I put more drugs into my stomach today than I have food.  Scott has left once for some groceries and then once to take the garbage down and during those times the door bell rang 7 times.  I could not even get up and hope to see who was there. 

But my bedroom window is open and I can hear things going on somewhat while psuedo-dozing in a light drug haze.....  The last time it was a group of small kids -- I wondered if they would come in the house after they looked around and discussed the house after ringing the door bell again and then checked out Scott's car, but they just sat on the front porch and waited..... loudly.  Which was pleasant because it means there is life going on somewhere close by.

But I still can't / don't move. 

Turns out they had important business - to give Scott the chocolate covered pretzels he had purchased from them for a fund raiser.

Me, I just lay up hear and eaves drop on the ones lucky or loud enough to wake me up.  And listen to the geese. 

Carbo, Ro, steroids, please be over soon. 

Thursday, April 12, 2012

I feel like I kind of have to make things right after my last post.  You know, the butchering turkeys and my little, oh shall we say, Guydog confession?  I like turkeys.  They were a lot of fun.  The butchering part was maybe part of my not-so-far past ancestral DNA and part of my like of "Annie Get Your Gun" theater.  But it is all well and good if you need to do it to eat, or if it is all theatrical, but not so much back yard material. 

I do like dogs.  I even liked Guydog at times.  But there were times you could look in his eyes and catch him in bad behaviors and you just knew he was smarter than you and was kind of - especially enjoying - yanking your chain because he realized some power in our household - he was dearly loved by the son.

Our son was extra good at hurdles in track a couple of years and we thought he owed that all to chasing down Guydog every time the door was opened more than an inch.  He had the best of lives in our home, sleeping on a pillow in a bed every night, and yet he could never get that "hunt-fever" out of his blood, and any time the door opened a splinter, he would slide through, and before you knew it he was almost to the road looking back at you with his tongue out laughing.  He only had three good legs, but he could run. 

He was also sweet at times, and dear to my son, so for that he holds a warm place in my heart. 

I wrote that all at 3am this morning.  I was a bit grumpy, and still am, and yesterday was like Hiroshima exploded in my head and in my mind, and I just spent the day trying to keep it mostly inside.  I was trying hard not to go all nuclear on someone else, but it was difficult.  

I didn't have a good nurse experience yesterday.  She was a "floater".  Sometimes floaters are the best nurses in the house and because of that they can choose a schedule and float where needed.  Sometimes, I suspect, floaters are 'floating' because no one really knows where to place them and keep them moving.

I got the latter. 

I think in at least 86 places in my chart it is noted I do not do well with steroids.  It is noted to give my whole measly little 6mg of steroid over a 10 - 12 minute time frame to allow my body to accept it better, deal with it better.  And, let's be honest, also to make me not want to stealthily plan ways to kill the person who cannot do that.

Steroids do that to me.  

The nurses I have had there have all understood that.  They do it every day and realize that some react in that manner and the best way to help is to deliver it slowly.  It does help tremendously.  It makes the difference between me leaving able to smile, or like yesterday, me just clamping my mouth shut tight so I do not say anything that I will have to apologize for later.

I felt meaner than sin.  My head felt worse.

I told her that it helps when it is given slowly.  I time them all - because I have learned that helps me to gauge my reaction later.  She gave it to me in less than 3 minutes.  I kind of thought then it was not going to go well, and it was even worse.  I finally fell asleep this morning at 5am, and only slept for over an hour.  That, with a couple of doses of sleep meds.

When this all happens, it also usually means I am going to have a hard withdrawal, and I think I will have to call on all the forces in heaven to forgive her sometime within the next 12 hours.

Realizing the effect that steroids has over me, has given me a lot of time to think on those that have little or no control over their thinking abilities.  Those that are schizophrenic, those that are bi-polar; those that have ADHD or autism; those with turrets syndrome.  Those with depression, anxiety, phobias.

I have always sympathized.  But now I emphasize.  I cannot deal with it when "something" controls me for a few days - how painful and hurtful and demoralizing it must be to deal with that for - life? 

So as I am laying awake last night, I am praying for those that hurt in their heads and in their minds for long, long times.   At least as long as my mind is thinking.  Mostly it is just dark and lurky and muddy and mean.  

Is this what criminals feel like?  Has something turned in their brain to make them meaner than sin on steroids?  Do years of hurt and regrets and pain make one shrink their soul and not be able to feel God's smile on them?

I don't know.  I do know the little computer beside me went clear through the book of Mark a couple of times last night and I heard Jesus delivering souls from demons, and I wonder if demons especially lurk about those that lose parts of their minds to whatever it is that takes it. 

So, maybe I am learning a lot of life lessons that I kind of knew and sympathized with, but now I know on a deeper level.  And I think they need prayer more than I ever did before.

And I probably really should not come downstairs and type while on steroids.  The stories can be grisly....

Stupid is as Stupid does......

I have done some really stupid things in my life.

Like try to butcher a fifty pound FFA turkey because I didn't want to lose the feed money put into it because of a broken leg.  As I have noted previously, those turkey heads are a little bit more firmly attached than one is led to believe.  My son had hit him squarely in the head with his 22 rifle shot, and the bird just kept walking around.  For like a long time.  With a broken leg.  It acted like if it ignored the fact that it had a hole in its head, we would just call it a day and walk away.  It walked in front of us with somewhat perfect balance.  It walked behind us, clucking.  We did kind of wonder if God Himself had touched that head and healed it.  Except for the noticeable holes and blood and all.

It was puzzling. 

Then we thought of old tales of "chopping off chickens heads behind the wood shed" and we thought perhaps we should chop the head off to finish the job.  My son ran to get the long handled ax and we promptly got into a fearful discussion that went something like this:  he eyeballed me and had watched me play wiffle ball enough to know my limited talent with swinging a light air-filled bat and said "I'm not holding it down while you swing the ax that close to me";  I looked at him and kind of thought of Lizzie Borden a bit, and said "I'm not holding it while you swing the ax that close to me"...... It was kind of a stalemate.

We did eventually get the job done and butcher it.  All that expensive turkey feed investment made real good dog meat. 

I have vowed to never try my hand at that job again.  Ever. 

And there was the time I brought home a recovering vet-clinic-reject two year old beagle over Christmas, only to find he was not house trained.  And we kept him.

Guydog and I were not friends.  On the other hand, my son and Guydog were the closest of allies.  I daily stood out in 20 inches of snow to 'train' him, because I had read all of the books and that's kind of what you talk about a lot to clients at a vet clinic - I knew what to do - I could do it; and finally figured out he was not a reward driven dog.  With him it was going to be the last man standing or who could outlast the brittle cold that winter before whimpering to go back inside.  And when it came to peeing, that heater-vent-hogging dog would stand outside there looking at me all the while knowing what we were there waiting to do, developing icicles on his nose, and yet refuse to pee.

I usually whimpered first.  Guydog and I were working hard on Psyop-ing each other long before his master left to do that in the Army.  He was oppositional-defiant before the term became popular. 

When we had a house fire and the firemen asked me if there was anyone in the house - looking back, I marvel at the words spilling out of my mouth - "a dog, in my son's room".......They bravely rescued him and we learned first hand what PTSD looks like in a dog - he ran frantically in erratic patterns in ten inches of snow for hours.

Although curiously, one of the firemen commented to me the same thing I had been thinking, "it kind of looks like he is crazy happy being loose and is laughing at you", and I knew he was.  When I finally caught him and put him into a cage, he promptly peed.  And I think he looked at me and sneered. 

That's just the opening paragraph for a thesis that could be titled "all things stupid in my life" 

Fourteen years ago, I dropped off of our new driveway into bottomless-clay-mud-without-sod up to the axels in a little S10 pickup truck and had to be pushed, pulled and just generally lifted out.  Not to mention what my ears had to endure.  I'm not pointing fingers, but there was some pretty open wonderment and even verbal curses on mud, back-wheel-drive-light-trucks, and their drivers (meaning me) that cannot back up in a straight line.  After we finally got the truck out, Scott actually got in the driver seat and "showed" me how to back up in a straight line.  He showed me to look at the garage door and look at where I wanted to be and put it in "R" and push on the gas.  Thus, totally jinxing it all.

In the spirit of true confessions, it happened more than once before we got our yard put in.  It was kind of a wet spring that year.....and I was the first one to leave in the morning, meaning I was kind of maneuvering around 4 other vehicles and a deep culvert.  It wasn't necessarily my choice to turn the wheel and end up in "off-the-gravel-path-sinking-mud-Haedes".....

In my defense, who knew how much sod makes a difference in keeping our terra-firma, well, firmer.....  Otherwise, pure clay mud is nothing but a big suction cup, and there was one time I was afraid I might not be able to open up my door by the time I had unsuccessfully tried to hide the fact that I had done it yet once again; and using the old "back-and-forth-get-out-of-the-snow-drift-trick", which by the way if you wonder, does nothing to help in mud.... I was in pretty deep.

For three months I was reminded of that maybe 1,462 times by male house mates. I suggest if you do try the "rocking" method in deep mud, only do it once. Fifty more 'back-and-forths' does not help.

I ordered a truckload of stone to make our driveway two feet wider.  

And then there's the biggie:

I jump into a medical study that is titled "Finding the Highest Dose Tolerable" for a new test drug....... You might hear my fingers drumming again as I contemplate the whole situation.

One would think the title alone would give one pause, but not me.   "Finding" might have jumped out at some people and made them think a little.  'Highest Dose' might have made one read the 60 page material-info-sheets entirely before signing it.

And if neither one of those words stopped you in your tracks, the word 'Tolerable' found after 'Highest Dose' certainly should have brought to mind some ancient Shawnee tortures and encouraged you to hand back the papers and kindly shake your head no.  Not even the "three chemo-dose days each week" encouraged my brain to consider other options. 

I eagerly signed the papers and the tortures commenced:  No coffee.  None.  Long days with long blood draws.

I'm ok.  I'm in.  It's going to be fine.  I can do this.

Then the bloat and the painful band all across  the bottom of my rib cage that makes all things body think twice before moving or sitting or eating or drinking.  My chemo recovery increased by 2 - 3 days.

I'm in.  It's going to be fine.  I can do this.

Then as my blood continues to tank, I miss four upfront very important treatments.  And get transfused and spend hours thinking on the blood that is now flowing through my veins.  (I am close to believing it was an allergy-prone male.)  I consider stepping out of the study 53 times a week.  I sit and look at that last pill on Friday for a long time, because I know what it is going to do to my insides for 3 days.

All that, and then because of my poor blood work week after week, they decide to halve the experimental drug dose, still using it with the Taxal and Carbo.  Last week was the easiest chemo step-down I have ever had.  I talked to the Nurse Manager Julie and told her I had to keep pinching myself to believe it was really this much better.

I told them I wanted to "up" the dose a little - could it be too low??  And get this - on page 61 in the drug protocol, it states:  "After a drug has been lowered, it cannot be increased again."  I told them I thought this was a really very, silly rule, and they looked at me kindly and said "Karen, you've not had your carbo yet - let's see where you are two weeks out again after getting that today".  They didn't even schedule my Ultra Sound because they "didn't want to jinx my blood", when everyone in that room knew what they meant was "wait and see if her blood can take this".....

So unlike butchering poor poultry, or driveway mishaps; or obstinate, calculating dogs, the latest of my "stupid is as stupid does" choices may be the best thing I ever ended up doing or the worst, but after the last three months, it has a lot to prove that it was worth it. 









Tuesday, April 10, 2012

Blessings I can touch

I cannot put into words how good this past week has been. 

I am eating well.  Too much.  I still have nausea and still mistake the smells of good food baking for the aroma of garbage, but if you were to see me today, and realize that my hat was not merely ornamental, you might just think me an over-tired woman.  A tired woman like every other woman in America. 

The lethargy and bone-weary-fatigue is not beside me, inside me, haunting me, keeping me far and away in another land of shadows and hurt and loss.  The shortness of breath is minimal - almost negligible.  I can move about.  Friends told me Friday morning they could see a "spark" in my eye - and I admit - it has not been there for ever so long. 

This has been my easiest step down from chemo ever.  I got the full dose of Taxal last Wedenesday, but they halved my Ro dose - the experimental chemo that I take for 3 days - and it has been an enormous difference.  A tremendous difference. 

My blood still feels well and happy for the time being.  All of my time has not been spent just recovering. 

I have a life after all.  

I didn't feel like Scott was dragging me and guiding me everywhere I had to go - I could think, I could move.  I navigated my own steps without help. 

It has been a long, long time since I have not needed tending and lots of care for days on end. 

*******

This weekend, I smelled the hair of my grand-babies as I held them.  I held them tight and breathed deeply.   

I made them give me four more hugs than is absolutely necessary.  Then they gave me four more hugs.  Their life bubbled around me.  They told me tales of their lives and what keeps them "so busy".  They told me their thoughts, what bothered them, what made them "so happy"; what they thought about when they were alone in bed at night.   

We grieved over a popped balloon, and laughed over blocks falling down.  We made "patterns" with the blocks and talked about "sequencing" - which one will come next.  They wanted to know why I didn't have any hair, and I told them the cancer I had needed some strong drugs to get rid of it, and that it also made my hair not grow.  I told them I still had ten toes and ten fingers and that hair grows back. 

They counted on a clock face "how many" it would be until my hair grew back and the magic number seems to be "8".  And I told them eight months might be a pretty good guess. 

They wanted to see my head, but I didn't want to make them afraid, so we deferred.  

Their minds have grown since I held them last and I marvel at their growth in that short time, which was the longest of times.  I have seen them, but not interacted with them.  I have watched them but not connected with them.  I have loved them, but not with a love that they could feel and hold onto. 

I remember my first visit to the Cancer Treatment Center and as I sat and waited for one of my doctors in a room that I knew was going to forever change my life, I looked over the walls, the windows, the door.  The building has some really nice decorative glass for doors and dividers and as I was admiring that, I noticed down at the bottom a little hand print.

A child had been in that room and leaned against the glass with their hand.

I see young mothers sometimes bring their children with them to treatment.  If those young mothers are on the same drug regimen I am, I do not know how they can continue to interact with their small children as mothers, when all you want to do is lay in bed and try to regain some strength.

I read the blog of one mother doing a similar drug regimen, and she hired a nanny for a year.  It is a deep grief to go through this and not be able to be who you want to be as a grandmother.  I cannot imagine how many times that is multiplied as a young mother.  

So I think of those little fingers on that glass, and I try to tell my little peeps as much truth about cancer as possible, but still I want to protect them from swallowing it and carrying that horrid information and being afraid.  They don't have to be in the room with me and hear things that hurt big ears - and even more-so - little ones. 

*******

But one day this past week, we hunted Easter eggs outside on a beautiful sun-kissed day; we watched Millie sit beside the bowl of chocolates and eat it until her fingertips were a melted brown ooze; and instead of her trying to clean it off, she suddenly rubs her hands together and has chocolate all over them and grins really big - like it is the best day ever. 

And it is. 

I watched a big yellow balloon pop suddenly and the subsequent tears, and then watched cousin Zoe offer Addy her balloon so there would not be so much sadness.  But there were no substitutes for your own balloon popping, and there is no substitute for grieving what you had and now is gone. 

But there were smiles in between tears.  And lots of arms to hug it away. 

There is no substitute for life's "bitters" - we cannot pretend them away, we cannot wish them away, we cannot ignore them away.  We have to look at them pretty squarely or they come back to haunt you more.

But the bitters make the sweets so much sweeter.  

And even though we have to face our bitters, the kindnesses of others helps.  Knowing that someone cares while you are in the deepest of the bitter pit, is a sweet balm. 

*******


We are given "one days", "one moments" and we don't even see them most times.  That time will not pass by again.  I was given some pretty glorious moments the past week.  After my carbo treatment tomorrow, I may be in that far away land of hurt again for a while, but that just makes the sweet sweeter still.  I have these heart pictures of my loved ones.  I have held them close enough to breathe deeply their connection to me. 

My children gave me a day of special blessing to be together with all of them, and I hold it tight, and taste it, and relish it ever so reverently - then rub my hands together to get it all over and just smile a big grin. 




Wednesday, April 4, 2012

Escaping Wrath

Well, well, well.

There was a little party in the last chemo room at the Stephanie Spielman Cancer Center today.  No wine, no champagne but it was a little celebration none the less.  My white blood cells pumped up to a mighty (at least for me lately) 3.8.  (norms are 4.5 - 11.0)  I am still low, but it's enough to get me back into treatment. 

My red blood cell count was a whomping 3.4 (norms are 3.8 - 5.1), but again, high enough to get me back in.  My hemoglobin is a tad low, along with my HCT, but it was all much higher than the last 6 weeks.....

And this is the magic formula that they look at every week - the 'Grans, Absolute' line on that lab printout that can crush my life or give me a possible cure.  It came in at an incredible - and I repeat incredible - 1.8 (norms are 1.8 -7.7).   

That one hit the "norms".  We might have been close to needing oxygen - it was a little unexpected. 

They like it to be 1.5 for chemo, they let us slide in at 1.0 if needed - which I have done a few times - so looking at a 1.8 after a sobering .7 last week, and a "close to hospitalization" .3 the week before that - is just like walking on the first star that shows up at night.  

Nurses stopped in to say "Yay!" and raise their hands up to lift the roof, and we were all pretty happy, steroid pre-treatment aside and all. 

Scott also reminded me at least 57 times that I got two -- repeat two -- "VERY VERYs" out of Dr. Mrowzik today.  As in, after she examined me I asked a little tentatively "are you pleased?"  and she said "I am very, very pleased".  

Big smile. 

The low point of the day -if there was any except for the stop-and-go traffic on 315 (three people at the center told me today that when it rains, folks in Columbus just melt down and traffic stops..... which surprised me), but, the new wary-eye-on-the-lab-printout is my monocyte line.  They failed to come down.

But Scarlett, tomorrow is another day.

I even got a "pass" to go out this weekend to celebrate Passover and Easter if I am up to it.  Holy, holy, holy, Lord God almighty.  I think I have possible appointments with a Seder plate and an Easter egg hunt with five little sweet girls.  

I am marveling at the power of a community of prayer, to use an old Christian cliche, but I am still marveling. 

So I had my little "vacay" and now it's back to work.  Or, I just landed in a C130 in enemy territory and it's time to get my boots back on the ground and become serious again about this fight.  And might I just say after our early drive to Columbus today, I have nothing, nothing, but extreme admiration for any soldier home on furlough getting back on that plane in the USA to step off some 30 hours later in a faraway land that hates them and simply wants them dead.

I don't know how they do it - I played a video game and listened to a purposely very loud CD about the crucifixion of Jesus the Christ - and I still wasn't sure my feet were going to move out of the car onto the pavement when we got there.

And with this being the week that we celebrate and remember Jesus' death and his resurrection - may I just say - I don't know how He did it.   The CD talked about how maybe Jesus wept and sweat blood in the garden because possibly in His humanness He had an "abrupt realization" that He was not only the lamb sacrifice - but that He was also taking on the wrath of God - with His death.  It was all interesting and actually helped me tremendously. 

A lot of people have suffered a lot more than me, and remembering that at times, horribly, sadly helps.  But I am so thankful for a Savior that has loved me no matter what; has forgiven me when I have been sinful to the point of not barely being redeemable; and I also follow One that has healing in His wings. 

He took God's Cup of Wrath on Himself for me.  If what I am experiencing can be a little, little bit compared to God's wrath - a picture of how sin can take hold and grow and do great damage in your life - and if suffering is sometimes a picture of God's wrath - what He did for me, for us, is beyond words. 

I am truly at a loss of words.  If you have any interest whatsoever, below is some of his audio that can be released - not the lesson I heard him teach last year on the "Cup of Wrath" - but it's a good reminder of what He went through for us.

I think about what has happened with me - the embarrassment, the turning of heads to look at me twice when people haven't seen me for a while or the three times I have snuck into a store - the realization that I am grossly out of place, I don't fit, I don't look like everyone else - that has not bothered me before, but when you are the main "look" in any given place, it's a bit uncomfortable, and I just want to get away.

He was stripped naked and beat to the point of death - and hung on a cross at eye level with the same people He had come to teach that mocked Him and spit spit on Him. 

The pain and not only the pain, but like today, the knowing that you are going to one place to be given pain by choice, by need - how did He do that?

I think longingly of the loved ones that I am not able to see for a very long time - to miss Baby Evelyn Fridays.  To have little Millie-bean look at me and say "I miss you so much Grammum" and then she added most sincerely "I can stay with you all weekend!!??" with a huge hopeful smile and a question in her voice - and I have to say no.  And Addy and Chloe and Zoe all say it and they have no idea how much I miss them; and I think how His heart hurt so over His earthly relationships.

If Passover is a reminder about sin and freedom and being happy remembering what great things God did for His people; then remembering Jesus' horrid flogging and the crucifixion and His ultimate defeat of death is Passover squared by like 100 gazillion.

And because of that, I escape the Wrath of God.

The God that told them to remember the Passover and the Feast of Unleavened Bread and to use it to take a look at sin in your life and get rid of it, is the same God that did awesome things to bring us freedom again. 

It's all one story.  

I don't have words for that.  Jesus walked His whole life with His eye on the cross - did He watch crucifixions when younger and know what He was in for?  And I can barely make my feet move and get out of the car for a painful help and cure of sorts? 

*********

The "Flogging" audio should not be listened to with small children around - it's pretty graphic - but I kind of relate to 'graphic' and embarrassment and hurt these days.  But it is nothing in comparison.  Nothing.  I am saved from God's wrath - I may suffer and may hurt - but the God of Moses and the God that Jesus taught us about, has saved me from that wrath.

I cannot explain it like a learned Christian-Rabbi, so here is the link if you have interest.  

http://www.followtherabbi.com/guide/detail/the-death-and-resurrection-of-christ