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Tuesday, November 28, 2017

Shepherd Yourself Back

James Cancer has opened a "Survivorship Clinic", or some such name just in the last year or so. 

I was directed there by yet another new oncologist whose eyes glazed over when I explained my brain symptoms yet again, then cried yet again, and accepted defeat yet again, as I saw her helplessly wave her hand and glaze her eyes (have I told you yet how much I miss my dear Dr. Mrowzik??)  -- then she said "we've started a Survivorship Program - I want to set you up with an appointment with the director". 

And I cried a little more, this time in frustration. 

My brain shut down, as I accepted one more appointment that I didn't want to do. I was tired of appointments. Tired of medical waiting rooms. Tired of being pushed around in the medical field that didn't know what to do with survivors that had changed brains.  

In reality, I'm fine with medical appointments and waiting rooms as long as I feel they are with excellent physicians who are productive and cautious. But I tire easily and have no desire to do the circuitous meandering that can happen in the medical field when they really don't know what to do with you.  

They knew how to help me with my neuropathy - nerve damage - in my hands and feet that at times makes my toes drag a little; that makes me trip often; that makes me watch my steps when I walk instead of looking ahead; that makes me wear heat-reflecting snow boots all fall, all winter and most of spring. 

They knew how to continuously repair a chest wall that seems always on high alert for inflammation to settle in and make life miserable for a few weeks. 

They knew how to help and protect against developing horribly swelling lymphodema in my arm and chest wall due to a lack of lymph glands. 

They knew how to eventually get me into a bra that won't rest on the cut nerve that continuously gives me pain and flares muscles spasms right at that bra-band spot. 

They knew how to do all of that, but when I talked about my brain and it's ineptitude to do much of anything that makes it overwhelmed, fatigued and confused, they didn't know what to do. 

There's no diagnostic slot for "chemo-brain" -- damage done to the brain from the extreme chemo-poisons that they gladly pump into your veins and/or port, and that you gladly receive to save your life. 

But for me, and many others, it was the curse that was the cure that is the curse - I say in a hoarse whisper, barely audible.

Because I wouldn't trade life-saving chemo for anything else at this moment. For the record, I wouldn't do anything differently in my treatment, as that treatment plan completely worked on Phase I Drug Study patient #6. So, it's a *little curse*, not a big one, because I'd much rather be here typing than not be here and not typing folks. 

But, I can't ignore it, I can't improve it except by minute micro-steps, and I can't get past it no matter what I've tried. (AND I do proudly announce, I am at 3rd grade level on ABCya - I just don't remember my lessons....smile)

To date, when the second or third new oncologist suggested the Survivorship Program, I had already seen two, maybe three, neurologists, with their accompanying 3 appointments to assess, test and tell me there was nothing they could do. 

To date, I had been told yes, I needed cognitive therapy, but there wasn't a diagnostic slot for "chemo brain damage", and of course we all know that medical folks do not run the medical field but rather insurance companies, so -- thoughtful space, thoughtful space -- no diagnostic slot - no insurance co-pay. 

One neurologist kindly told me "to enjoy my 'retirement'", after he had told me in the second appointment that I had 'fixed dementia', after I cried for a week when I went home and looked up 'progressive dementia' - the term he offered in my first appointment with him. 

My first neurological testing said I was depressed. And of course, suddenly my brain that was exhausted beyond comprehension from hours of testing, the same brain that now has no first three layers of suppression capability says "oh!! oh!! cry!!", and I cried because I felt so misunderstood - and the tester/doctor is convinced, that "oh yes, she's depressed and just can't admit it", and I tell her if I am depressed that's fine, but I WANT BRAIN RECOVERY IF I CAN GET IT, and it just collapsed. I remember leaving that hours long appointment not even being able to find the parking garage in the dark that my car might be parked in.

The last brain doctor kindly patted my hand after hundreds of dollars and more testing and said "you need cognitive therapy, but your insurance won't cover it. Go live your life and enjoy what you can" .......

When she said that, I remember looking down and feeling something I hadn't felt for a very long time. I remember looking up at her, and she immediately saw that something that hadn't been there for a very long time. She realized something was very wrong so she stood up and said a few things, reminded me to schedule a follow-up and left the room.

Again, again, my hopes had been dashed by a specialist who had wasted my money, my insurance monies, and my time. 

She had been the one that I had hung my last unshattered ornament of hope onto - the one that was finally going to unlock the secret to recovery for my brain. 

I had foolishly thought, maybe this doctor would help me not have to allow an extra hour when I travel alone to allow me time for getting off on the wrong exit possibly 3 times in one trip. Or maybe she could help my brain know that when I had an appointment in Columbus, that I shouldn't head to Wooster. 

Maybe this doctor could help me read again. Read luxuriously and intensely and deeply feel the author's words. 

Maybe this doctor would give me back my intellect, the ability to make connections in my brain. The ability to retain what I try to re-learn. The ability to logically think, the ability to focus and deeply be involved in life again.

Maybe this doctor would help me connect to people again.

All my 'maybes' and hopes dissipated forever in a few words. She did not, could not, would not. 

One more hand pat, one more instruction of 'acceptance', one more, one more.

If recovery wasn't attainable, I was going to be ok with that, as much as I could be. But, this 'one more' neurologist had promised me help at my first visit, and then gave me one more hand pat, one more 'go on and live your life'. 

I WAS living my life as accidentally and fractured as my brain could do some days, other days were incredible and good. 

At those words, at those hateful words she gave me, finally, my brain got mad. Maybe because I had heard them too many times from too many specialists. 

When she said "I know what you need, but I can't do that for you", I got so mad that I cried angry, red-hot-eyes tears, instead of the confused and overwhelmed tears that are ever present behind my eyeballs now. 

I left her office, walked past the desk where I was supposed to make a follow-up appointment, walked out of the building after riding the elevator up and down and up and down because I lost the ability to remember where I was supposed to go or which floor connected me to the right exit door. 

When your brain is suddenly red hot angry after a very long hiatus, pushing elevator buttons is not suggested. If I could have hired someone to get me to the right place, I would have paid them $2k on the spot. 

When I made it out of the building and found my car, I sat in it for a long time, still crying hot angry tears. 

Then I decided to go look in furniture stores, which is something Columbus has in great bounty, to relax my brain and think about something else. 

When my brain is overwhelmed, I've learned to take a break - a distraction - and do something completely different, so walking through furniture stores, looking at their displays is something my brain still really enjoys. 

I programmed my map-phone-lady-best-friend to head to Laz-E Boy furniture, and that folks, is how I ended up buying a new couch last year. 

Well, to be honest, two new couches. 

And maybe it was two years ago - I don't remember.

But I do love them.

****Word to the wise fellow chemo-brain friends -- when your brain finally gets red-hot angry versus being overwhelmed and exhausted and confused -- you are very prone to make really too-fast and poor financial decisions. 

Or in other words, a brain that finally re-finds righteous fury, can leave your poor husband open mouthed and speechless for really quite a bit of time.**** 


********


Scott had the day off school yesterday, so he accompanied me to my appointment with my "brain-pain" doctor. 

He loved him as much as I do. 

For the next 6 - 8 months or more, we are trying a new "brain drug" to help my neuroreceptors hopefully strengthen enough to either reuse old pathways or build new ones. 

He explains things to me over and over again, and uses word pictures to help me remember what he is teaching me about the brain and how it works and how we are trying to jump start it to recover some.

He also writes detailed notes that I scotch tape onto my pantry door to remember what he has instructed. 

Yesterday, after the first four numbered instructions which were all about drugs, #5 was "Continue Speech & Language Pathology for cognitive-language evaluation and treatment." 

Continuing his list: "#6 As a self-care discipline, I invite you set up a daily alarm to start your day with reciting the day, date and your schedule for the day." (Kendra, my awesome SLT lady, says to do it first thing in the morning and speak it out loud. If you happen to walk down my street and my window is open, pay no attention to the many inflections I can put into the day and date when saying them out-loud to seal it in my brain)

Today is Tuesday, November 27th by the way..... But I had to look again. 

#6 continues: "Then I want you to refrain from social media until about noon each day. I want you to get caught up on your own life each morning by focusing on the here-and-now, concrete reality of your surroundings and you acting purposefully in it. For instance, make, eat and clean up your breakfast mindfully. Reflect and articulate your personal process by journaling or blogging. Do some activities that lend order and beauty to your surroundings. Do your Speech Therapy exercises. Make, eat and clean up your lunch, then check facebook and other social media."

"Return to clinic in 4 weeks." 

We chatted a bit about why I can write and sound so, well, better, but I cannot read nor barely articulate what I want to say. He said some with brain damage can read but not write, some can talk but it's not the sounds they want to make. Others can talk, but it's not the words that their brain is thinking, so he said the fact that I can communicate with writing but have difficulty in other areas is actually scientifically founded. 

I have found that much of my interactions with others has been delineated to surface chatter, and funny one-liners and basically staying away from conversations as I tend to get into a lot of trouble at times saying the wrong things, or the right things in the wrong way. 

And sadly, basically I'm learning, I've been training my brain to interact like we all interact on facebook - one word, or one sentence or a lot of superficial scanning. 

And it's not good for life, it's not good for Karen's brain repair. 

So, I'm off social media, tv back to back Law and Order episodes, screen games that can eat up too much time and help me deal with life, but not help me live in the here and now. And interact with others in the here and now. 

I've jumped into the Survivorship Program with both feet this past summer, after a pretty severe neuropathy flare up in the spring and summer - gifted to me by a virus in March invaded my body and caused every nerve ending known to mankind to literally *flame up*. The pain from the fire-needles-shooting-up-the-leg neuropathy placed me with the original "Pain-Brain-Doctor". 

He got my pain under control with meds and the help of a kind and good Physical Therapist, then he said, wait for it.......... "let's work on your brain". 

And my words spilled out easily because unbeknownst to me and others about me there is an eternal optimist that hides in me, and I said "yes, let's". 


*******


Dr. Pain-Brain said something to me yesterday which touched my very deepest soul. I asked him to repeat twice, three times. 

He said "You are going to shepherd yourself back". 

Then he said, meaning himself and Scott, and all the other awesome folks I am seeing right now, "we're going to help you shepherd yourself back". 

I can think of no better way of saying what I need to do - the visual of sheep lost on many hillsides, bleating for attention and the need of a shepherd to bring them together to count them and order them and keep them safe, is ever present as I read the Psalms over and over again. 

But this time, the picture is that I'm the shepherd, and my brain sections are the lost sheep ever bleating for attention and keeping me scattered and running and overwhelmed and hopeless that I can ever shepherd it all into one fold again. 

If I see my Savior as the Good Shepherd and there's a lot of mention in the Scriptures on how to shepherd well and how to do it poorly, then shouldn't I try to be a good shepherd to myself and start - with lots of help - to gather the poor lost sheep of my brain fragments back into the fold. 

It is time. I'm grasping this idea with full throttle. I know I've lost some of those brain-sheep, and some are always bleating yet tenuously out of reach - but I'm going to seriously start Shepherd School here folks. 

It means I have endless appointments stacked up in Columbus for months, but it also means that at the end of 6 or 8 or 17 months, I might be thinking more logically, more focused and be more mindful. 

It means I need to use every shepherding tool available, and I plan to delve in. 

There's fringe benefits - it also means I can see grandchildren more and grab an overnight bed more often when needed from my dear childrens, so it's all good.

Today, I've *mindfully* repeated out-loud my day and dates; I've mindfully made breakfast, cleaned it up and started blogging. I've also *mindfully* started two loads of laundry. 

If someone would have told me ten years ago that my day would be centered around doing *mindful* laundry, I would have laughed out loud, because that's of course a mindless activity that is done by everyone, every day. 

But it's baby steps. Mindless cooking has cost me hours and hours of soaking and scrubbing burnt up pans that I forgot were on the stove.  

Micro-steps to hopefully train my brain again - I can't just jump into third grade when I was barely PreK five years ago. 

Or as Dr. Pain-Brain says, "we're putting training wheels on your brain" with the activities, the homework, the *mindfulness*. 

As I type, I get up to open another bottle of water, and mindLESSly sit it down on the coffee table, right beside the other 3 just opened bottles of water. 

You can see, my work is cut out of this flailing shepherd, folks. 



















Tuesday, November 10, 2015

The 9th of November

Today is a day our family reflects on time to time. It's our family's "day of sorrows" of sorts. Actually, there  are a few days that are locked forever in our memories as days that "our world changed due to evil", and they are days that we keep and count as "having survived". Today is that kind of day - disasters happen - but you grieve it, and you survive.

The Jews keep Tisha B'Av - "The 9th of Av"* as it is the date that so many disasters have fallen upon them in their history - the destruction of the temples, the purging from countries - it's a day of sorrow for them.

For us, "The 9th of November" is a tiny bit similar. On the 9th of November in 1995, I was standing in almost knee deep snow watching a large group of firemen use long poles to break the upstairs windows and put out a substantial house fire in the farm house we were living in at that time. The roads that 'T'ed at our house were full of fire trucks from three fire departments, and the vehicles of the volunteer firefighters in our township. When I was called at work by a frantic neighbor, I could see the cloud of smoke four miles away while racing home. I got there in time to see huge flames shooting out of the first floor back windows. I knew some of the firefighters so they let me stand there in the snow covered garden and watch.

A firefighter grabbed me and wanted to know if anyone was in the house. My heart clutched, stopped a bit, as our son at that time was known to be creative at skipping school. I would sit in the driveway waiting to head to work and watch them get on the bus. I would be sure he got on that bus, but the school would call me later telling me he wasn't there.

I told the firefighters there might be a slight possibility someone could be in the house, but that I was pretty sure nobody was in the house except our beagle.  I didn't have much hope for Guydog, as he wasn't howling his fool head off like he did 102% of his life when he wasn't happy, but I told the firefighter about him thinking they would not risk anything for an animal. To my surprise, I was talking to a firefighter that must have been an animal lover too - he asked exactly which bedroom the dog was in, how many steps it was from the top of the stairs to that bedroom door, and I stood in that garden and watched acute courage in action - that firefighter went into the house, crawled up the steps that looked like a smoke billowing chimney, seeking a pet that an 11 year old boy loved more than life.

I remember looking through the house later that day - amazed that after the fire I had seen coming out of it - that it was still standing. Some of it even looked undamaged - my daughter's bedroom in the front seemed not touched by the fire - yet when we grabbed some clothes for her out of her closet - the stench of the smoke was appalling. Then we unfolded her jeans, and found they were different colors at each section of the fold - they had been "smoked", and her clothes were unwearable.

I remember finding our tv on the other side of the living room - the firefighters or the water force had thrown it there while fighting the fire. I remember seeing black everywhere - I had not realized until that day what smoke damage truly did to items. We were told that we could try to salvage things, but that we would not be able to live with the smoke smell that was now imbedded into everything. Much like smoked meat, the temperature in the house had been so high that everything was "smoked" forever.

I remember not being dazed that day, not crying, not wondering what on earth we would do now. I remember just sighing deeply, heavily realizing it was yet another disaster that we were going to have to work through. I immediately saw all the work, all the money it was going to cost and wasn't sure how I would be able to do it all - I had a full time job, my kids were busy with sports and school, my husband was a full time student and working part time. We were already living on the lowest budget possible. And yet, my kids were walking away with the clothes on their backs, and they had school tomorrow.

I don't think I ever cried over that house fire. As my daughter told me once, "it was anti-climatic to you". And it was true - it wasn't the worst thing that could happen to you in life.

I remember later that day knowing we could no longer live in that house. We had to find housing immediately. We no longer had anything of comfort that you surround yourselves with in your daily life - I didn't even have a curling iron to calm my fat, uncontrollable, frizzy hair down.

The next day I took off work, and went in to the house that was so cold now with broken windows and broken glass and broken everything all around, and collected things that had not been damaged by fire or water from the fierce hoses. I gathered up the quilts my grandmother had made, and even though they smelled atrocious, I would not throw them away. A cleaning service that specialized in house fires was called out to help, and thankfully we had a $6,000 renters insurance policy to cover some of the cleaning service and buy a few things. I remember feeling a heaviness in me when I knew we couldn't afford the whole after-fire-cleanup and what it would take from us, from me, to do the job.

I remember our first emergency 'reclothing' trip to Wal Mart had our check flagged because it was over $500 just buying underwear, socks, hats, gloves, sweat shirts and sweat pants. I remember someone taking the kids to the mall and  I told them to buy wisely, and to buy three complete outfits that they were going to wear the rest of the winter. We had to buy everything. I remember spending $2,000 in two days on clothes and shoes and boots just to get us back to work, and back to school. And that was only bare essentials.

I was suddenly presented with the fact of just how much life costs - what it costs to rebuild from nothing. We thought we were already doing that, but this was a few levels deeper, a few cuts deeper than we had already endured.

This fire with its Grinchy powers had robbed us of everything.

There was not even a cup of tea, not a familiar bed, not a soft pillow.

And oddly, to me, it was just another mountain to get our wagon over in the long Rocky Mountain Range of never ending soul-sucking, soul-quaking peaks.

Disaster and life altering events were so much a part of our lives then, it truly was just one more mountain in a long arduous trek.

***

The 9th of November holds another bit of family history with us, a day that I keep quietly, a day that my brain flashes back to avidly with short bursts of pictures most of the day.

Three years ago on November 9th, I entered the front doors of the Stefanie Spielman Center for my last chemo treatment. I had started treatment for my cancer January 4th of that year, and was finally getting my last chemo infusion on November 9th. I had been told that my bone marrow did not generate well, which was a result of something earlier in my life. I was told because my bone marrow didn't want to regenerate that my red blood cells did not regenerate well, and that was why I took so long to recover my blood counts during treatment. They told me all that as I watched in some horror, some relief, while someone else's blood dripped into my veins to give me renewal, regeneration, life renewing cells back into my body.

I was told my veins did not like the treatments, my body couldn't handle the nice "poisons" that were so lovingly dripped into me. I was told I must have "super-sensitive red-headed blood veins", and I agreed as my grandmother was a redhead. Every person that ever cut my black hair - before L'Oreal' - would tell me I had a lot of red highlights in my hair, so that made sense.

I was told that chemo is cumulative, and that my body would just continue to step down until my chemo ended. It would not start any recovery until that poison drip that stops all cell renewal - every body cell from my ulcerated mouth, throat, esophagus, stomach, intestinal tract, finger nails, toenails, hair, skin rashes - every body cell had been grossly interrupted and it would not get better until that chemo had ended.

I was told a lot of things as to why my body was just smashed that entire autumn for my second round of treatment. All I know is that I was so, so sick, lost so much weight, could barely function most days - that I basically crawled into those last chemo infusions. Scott held my elbow in the parking lot not only to steady me and pull me back out of the way of other cars I didn't notice - but also to keep me pointed towards the door. I wasn't sure I could walk back in and take what I knew from the first in that series to be a sledgehammer breaking my body again.

I remember well parts of that last treatment - I remember I got the chemo room with the best view. I remember I was given my favorite chemo nurse. I remember I was so, so relieved that hopefully this was the last time I would do such a day again - the blood draw, waiting for the blood count results, getting the results then waiting for them to be counted manually to hopefully get me into treatment. The nurses masking up to protect low blood-count patients when inserting the bent needle into the Power Port. Watching the nurses put the premeds in slowly, feeling my body relax with the injectable Benadryl, yet tense tightly ready for fight with the steroids. I could feel the blimping of the steroids very quickly. I remember the volunteers in the red OSU jackets that smiled and greeted me and remembered what they brought me every time - they would bring me 3 bottles of water and 3 oven warmed blankets to huddle in while my body would suddenly be frozen at the start of treatment.

I remember watching the nurses hook up all the bags to the IV pole - the wretched Cytoxin, the fluids of which they always gave me extra; and then I remember my body revolting at seeing the 3 super large, bright red syringes full of what is kindly referred to as "the red devil". I remember watching that being pushed into my port tubing, and I remember chatting with my kind, funny nurses the whole time I was watching. They were afraid, rightly, to get the chemo onto themselves, so they gloved up, gowned up, masked up, to protect themselves. I remember how careful they were pushing those bloody red syringes - there was no chance of it popping off, even if it was locked onto the tubing, they took no chances.

I remember the glass of ice, the sweet grogginess and short warm naps from the Benadryl. I remember waking from that nap with a vengeance every time - the steroids would make me feel murderous. I remember Scott sitting in a chair in front of the sunny window smiling at me when I woke up. There was knowing and fear and love and warmth in his smile. He knew what the steroids did to me, and he just sat there and smiled as I struggled against the monster that had once again been injected into me.

I remember longingly looking out those awesome warm windows on a beautiful fall sunny day and seeing joggers, bikers, walkers all on the bike path weaving in and out of the trees. I wondered if they could sense me watching them. I wondered if they could feel the collective longing of those inside this building wanting to be outside with them. I wondered if they could feel the watchfulness, the longing from the windowed fourth floor chemo floor.

I remember hours later finally being unplugged, released, and the hugs, the well wishes from my dear sweet chemo nurses. They all came into the room and loved on me before I left. We had been through so much together - a war together - they had upheld me every step of the way, and now I was leaving them all behind. How do you thank someone that gives so much help and healing and love and understanding - how do you say thank you to ones such as those?

I remember getting into the car, and sitting back in weariness and relief that I would not step back into that building for a long time as a chemo patient. That part was behind me.

***

When I drive through the Pennsylvania mountains now on my way to see treasured loved ones, I wonder how the pioneers did it - how do you climb one, two, ten mountains, and then see ten more ahead of you? How did they continue that trek over those mountains, which were later considered small when the Rocky Mountains were being travailed over? How was it that the promise of land in Ohio, kept them putting one foot in front of the other?

I always marvel at what some humans, at some times, can accomplish. What they can endure. What heartache and sorrow they encounter and still decide to live life.

The 9th of November has been momentous to us, to me. But for both of those horrid things that happened on that date in my history, they were both rather anti-climatic.

Those things that happened on the 9th of November are not the worst things in life.

House fires are difficult. The last chemo in an arduous treatment schedule, is rather difficult. But there are other heartaches that are so much worse.

***

I remember the loss and pain of those days. But I also remember so much more.

The day of the fire, I remember a friend later standing there beside me watching the firefighters work and quietly placing a check for $500 into my hand.

I remember getting three days off of work to deconstruct the whole thing - we had to clean out the house asap, so the owner could get a crew in to start working. Our church offered to help that Saturday. Then, the Fellowship of Christian athletes from Mapleton said they would be there to help on that day as well. Then teens from the neighboring school, Crestview showed up. Friends poured in. Farmers that knew us took time off from harvesting - their most important time of year.

They all showed up in droves.

We had been told that everything in the house was a total loss. There had been a huge dumpster delivered and sitting in the driveway beside the house emphasizing that point. We had been warned that even though the smoke smell might abate some after time, that there were pretty serious toxins still locked into the 'smoked' items that you didn't want your family breathing in - we were strictly warned that melting plastics, melting chemicals in basic household items release toxins that were now also imbedded in all the items in the house. Even if the smell of smoke didn't deter us from keeping things, the knowledge of the toxins all our belongings now held should - we were warned repeatedly that we didn't want our family breathing those toxins, not now, not later. We were told to dump it all.

The next day, Friday, I took the family photos, the quilts, the few things that were dear to me and still intact. I cleaned up the broken glass as best I could for safety. I tried scouring and cleaning a few things, but the smell would not leave. I didn't want to believe what I had been told - it seemed like such a waste.

Saturday morning was bleak, and the snow was melting. But an amazing thing began to happen - our driveway was flooded with cars. Then they parked on the county road in front of our house. There were people everywhere kindly donating their day to us.

I told them that all I knew was that the house had to be emptied by Sunday night. What I didn't tell them, was that there were some things I didn't want to see thrown into the dumpster - I just wanted them to do it - it helped if I didn't see some of it happening.

I couldn't be everywhere, make decisions for everything, so different ones took over the kitchen and threw out in the dumpster what was plastic and reeking of smoke, and took other glass dishes home to their house, to put through the dishwasher to see if they could be saved.

Others started to place the large upholstered furniture pieces into the dumpster. And even though I had been told that we would not be able to keep anything due to the smoke, that it would be hazardous to sleep on the mattresses and bedding because of the toxic smoke from melted plastics and other chemical reactions that happen in that much heat and fire and smoke and the chemicals put into the hose spray to put out the fire - I could not just throw some things into that large cave of waste of a dumpster - so some of the wooden pieces of furniture I stored in the barn to let them have a chance to air out and hope against hope that they would be ok.

But the house we had lived in now for three years, was emptied in a day. It was a beehive of activity.

I was overwhelmed. I felt bad for my kids - you don't necessarily want your friends at school to see what your underwear draw looked like - but on the other hand, the outpouring of love and help wrapped around us that day was amazing.

And people kept giving us money. And clothes. And towels and silverware and dishes and cooking utensils and furniture - so many things were gifted to us. Someone gave me a stack of Levi's jeans that were my exact size that I wore for years - it was incredible the overflow of help that was sent our way.

And know this - the family that left the burned house that Saturday night with barely half of a pickup truck full of belongings, was the same family clothed and fed and housed and supported within a week.

Within a week, someone found us a nice house to rent in the middle of a large woods that spoke peace and serenity to our souls. Within a week, we were moved into that sheltering house that was worth more than we could afford, but were given it at such a low rent that it was completely doable.

We had literally lost everything. Yet, we were so upheld, so carried, so lovingly lavished on that I don't think Goodwill gets that many donations in a two year time period.

We had already been through so much hurt, so much heart-wrenching pain, that we seriously had questioned if God heard our prayers, if he was walking with us through all this deep dismal valley of despair. I thought the house-fire was one more lonely strip of rocky walking.

But then this.

It was amazing, and a picture of how the Kingdom of God can be on this earth. It was a time of being carried, and I had never seen anything like it before.

It was like God knew we had been over so many mountains with little to no help, and this time, this time, He was going to show us the opposite - He was going to open the gates of heaven and let it flow.

***

I have made some choices throughout all of this junk in this lifetime of mine. There was a time in my life where anger and bitterness almost drowned me. I couldn't believe the evil that others could generate, and I couldn't believe God had not shielded me and mine against that evil.

But, working through that anger and bitterness helped form a firm resolution in me - I wasn't the only one hurting in life. I wasn't the only one in great distress and pain. I wasn't the only one God seemed to be throwing into the fire.

I was patiently taught by a good therapist that I needed to allow myself to grieve, and he taught me how to do it. He patiently taught me that I needed to move past the anger and bitterness or it would consume me.

And it almost did.

But when we learn to properly grieve, somehow that bitterness and anger is not so strong, not so controlling because you are giving your insides and soul what it truly needs - to grieve. You allow yourself a chance to react to the immense sadness that evil, horror and suffering generates.

Not grieving causes a lot of problems unnecessarily. Going through horrible things is bad enough - not grieving makes them even worse. Pretending like something didn't happen, or that it just really wasn't that bad, or that it was all for some "magnificent, cosmic reason" is against God. And your God created soul.

I decided throughout life's troubles, agonies, defeats, pain, hurts, that I would choose to not blame God. God was not in the business of informing me for any reasons on anything. Horror happens - and God does not hold up signs saying "in heaven Job, you are going to know why". And in a way, if so, does the "reason why" carry so much weight - maybe God withholds the reasons for a reason. I don't know. I probably won't ever know.

I decided instead, I would choose to realize that it's not the reason behind the horror that you focus on, but that you focus on your response to the horror.

At least when I read my Bible, that's what it speaks to me. The Bible is full of people that had horrible things happen to them, and it seems it's their response to those horrors that speak to me. And then there are portions of the Bible dedicated totally to their grief.

Grieving is so important to the Jews, that they dedicate a week of mourning if you have lost a loved one. They dedicate a day of sorrow to remember what has happened to their people for thousands of years past. They allow themselves private and collective grieving.

On the other hand, our north American churches are rather bad at teaching suffering. And I haven't heard a lot about truly grieving.  We don't know the reasons why, so who are we to put words in God's mouth? Instead, wouldn't it be better to teach how to love others through suffering, how to grieve with those who grieve?

We shouldn't be afraid of grieving as a correct response to suffering.

If I'm reading my Bible correctly, we are going to suffer. God doesn't tell them "to get over it". He doesn't say "don't grieve". In fact, one of the favorite verses some quote is "Grieve not as one that has no hope".

I try to tell them that they are maybe misunderstanding the words - it doesn't say not to grieve, but rather in your grief, to remember you have hope.

I don't know why God allows things to happen. I never will this side of heaven. All I know is that I am human, so I am not exempt even if I claim God as my salvation.

And I know that I have seen the hand of God move in his kingdom here on earth in two extraordinary circumstances that I could never have imagined.

I know in my deepest heart that horrible things will still happen, but we as the God-reflectors should be the ones helping the broken-hearted, sitting with those who weep, holding the hands of the sick, and sustaining them over that mountain that threatens to consume them.

We should respond to suffering with grief. Allow grieving. Embrace it. Because doesn't God say he is close to the broken hearted?

And then it's our job to load the broken, grieving, hurting one onto our donkey, take them for help, and pay for their healing out of our own pockets, right?

***

And yet, there is more. I am working on a post to give honor to God and what He did for us during my 14 months of cancer treatment, so I will not overwork it here. But to give you a sneak inside view, the heavens opened up again in a far mightier way this time to meet us in our most desperate need.

Sometimes we read the Bible and are quite arrogant in how we think over the ancient Israelites. We ponder over how they watched the plagues of Egypt, then watched the sea part and Pharaoh's army swallowed up, then just a few days later are upset that they are hungry and thirsty. In our arrogance, we wonder how they could ever be that shallow, that fickle.

Yet, I have seen the mighty hand of God move in my life a few times so visibly that all the people around me marvel at his work, and yet, yet, I remember the times that I didn't, couldn't see the hand of God work, and crumble and cringe at every turn.

I was upset about having cancer. I was stage 3, and I knew with this aggressive, swift cancer that that was not a good place to start the journey. I sobbed and grieved and wanted to be doing anything else than this.

I started out thinking I could work through it, then realized with the four day a week drug study, I couldn't. Plus, doing chemo 3 days a week, kind of just smashed me.

Very quickly that January, I realized we were going to have to sell our house, rent cheaply for a while and just hunker down and survive until this was over. God had brought me to a place where I realized a home is just a house, you have attachments to it of course, but it is never to be valued over financial responsibility leading you to be a slave to it and do without everything you need.

I stressed as we were in no shape to get a house ready for sale. We didn't have the time, nor energy. The trips alone were costly - a one hour and forty minute drive at $3.79 a gallon, was quickly draining our checkbook. We stayed with our daughters a lot, and thankfully Scott had a boatload of sick days saved up, but at one point I returned a $132 prescription because we just didn't have the  money for it.

Our house pastors at the time were visiting us often, and they started bringing us money to help "hold us over" that the house church had collected. They helped keep the electric on. They helped buy the things that you don't even know you are going to need money for - chemo hats are different from other hats in that they cover the whole head. You need one to wear out, one to wear to bed, one that's comfortable during the day. You need scarves for your neck suddenly as you now have a "naked neck" that is so very cold in the winter. You need different clothes, different bras, different socks because of neuropathy, different shoes. My closet was business or sweats - I didn't have much in between. I had to go buy "stretchy pants" because my body would swell 3 sizes with the steroids and chemo each infusion. OTC meds weeks after week add up quickly - the list is rather long.

It didn't take a rocket scientist to see that this disease was not only going to rob my body, but our finances too.

We weren't the only ones that realized that. Our house church decided they were going to organize a benefit for me. I was embarrassed. I balked at the idea, but they wanted to do it. They said "God told us to do this".

People, there were not a lot of people in this house church, but somehow they connected with friends from other churches we had attended; they connected with people I had worked with previously; they connected with friends in our Mapleton community; they connected with folks in our wine club; they connected with so many people there was suddenly a literal army of people showing up to help one person, one couple live.

They said they wanted to raise enough money to get us a better car that could get me to all of my appointments. Our 9 year old Nissan was not against stopping on the road somewhere, even when I would beg it to move on. We were paying a lot of money for a problem that wasn't getting fixed.

We were presented with a car, people. A car. Who does that???

But not only that, we were presented with a bank account that held more than my annual salary, and this just on the heels of the fact that I was bringing in zero money.

What kind of God does that? What kind of people do that? I mean, really. Who does that here in Ohio?  Other than Ellen or Oprah, who does that here on earth??

I ponder over the amount of work all of those people put into saving one life, helping a couple walk through the valley of death. I had seen God work in a mighty way before, knew we could lose everything and yet he would carry us, but I never, never, never thought it could be like that.

***

When I first started treatment, I was accepted into a drug study, but needed a full body scan first. I was given the scan results on a Friday afternoon late - after you cannot reach a doctor for a whole weekend - but the woman on the other end of the phone read the report and said that it looked like my cancer had metastasized to my lower back and a few other places.

We heard these preliminary results on our way home from Columbus. It was dark, Scott was driving, I was sobbing. Deep heart-wrenching sobs. I knew what a cancer already spread to the bones meant. I knew it was in my lymph glands, but we had hoped it could be stopped.

This scan showed it was much later in the game than we thought.

I was simply overcome with grief - I wasn't sure it was even fear, although fear was a part of it - but I just instantly saw everything I was going to not experience here on earth. I wouldn't see my granddaughters go through school. I wouldn't be able to be a part of their lives that they would remember.

I remember I just kept saying out loud, "not now, God, not now". And I kept pleading God for his mercy. A friend called, I told her, but could barely talk. We were getting off at the Ashland exit, and Scott called a friend to see if we could stop in. They shooed off their guests and offered us sanctuary.

I remember sitting on their couch, weeping at the loss that seemed looming in my immediate future. I could barely talk and make sense. I was shaking. It was all gone. In a moment, my life had changed and it looked all gone.

I was grieving.

Morven sat beside me on the couch, held my hand and just let me sob. She handed me tissues, handed Scott tissues.

Then she did the most loving and symbolic thing - I was still wearing my hospital ID bracelet from the scan earlier in the day, as I couldn't pull it off my wrist.

Morven reached over with a pair of scissors and snipped it off. Then she said "now you are free from that".

And suddenly, I was not grieving as one that had no hope. Even if I was stage IV, and was just handed a swift life sentence, I could also be freed from it.

She didn't tell me to stop the sobbing, to get a hold of myself. She didn't tell me that this was all for a reason and that it was all going to be ok. Instead, she sat there and held my hand, saw I still had "the sentencing bracelet" on my wrist and snipped it off.

Then handed me a hope to tie on to, and said "you are free". I knew I was not going to be freed from the approaching pain, but I knew that my soul could be free whatever my circumstances.

That is hope at the time of grieving.

***

The 9th of November is a time for me to reflect and grieve. I remember my suffering. I know it's not the worst that some have suffered, yet it was my suffering, and I know it needs to be grieved.

It's also a day that I remember God's hand in the course of human events, his hand in the course of my life.

Sometimes, through great suffering you feel so alone, so singled out for suffering when everyone else seems to be doing fine. Sometimes, it all seems too heavy to bear by yourself, yet you have to trudge on.

Other times when you are broken in body and/or spirit, you see the heavens open, see God's hand move, and his kingdom here on earth respond, and you are carried over the tough mountains in your long journey through the wilderness.

Sometimes, you see great gifts and love lavished over you and you are not to balk or be embarrassed, but be grateful.

Sometimes, through great suffering and through great grieving, you are given a string of hope by someone sitting beside you while you sob.

Now, on this 9th day of November, I leave my room of grieving where I meet Jesus and sit by him and mourn for my suffering - I leave that room again, close the door, and go on to live and wrap myself in life. Sometimes I have been in that room for hours, days, but as my wise therapist taught me, there is a door on grief, and I open and close it. If I stay there too long, I sin against my creator. If I refuse to go into that room of griefs and pretend all is fine, I sin against my creator.

But I grieve it, for a much shorter time this year, and feel God close by.

And I marvel when I feel God close by, whether by his spirit or by those he sends to wrap your broken body and take you to a place where you can heal.

We lose so much in life sometimes. But, I think at times, life is all about the losses, and all about the grieving them, and all about feeling God millions of miles away or feeling God close by. There are no easy answers, and we shouldn't try to give fickle answers to suffering. But we should always, always, carry the broken to Jesus. He saves every one of our tears. He sits close by when we suffer. He himself asked others to sit close by him to prepare him for suffering, and to prepare them for their horror. Shouldn't we do likewise?

And none of us should ever shirk the grieving - in ourselves or in others. Thank God there was someone to teach me how to do it, how to open that door, then close it.

Thank God others have sat there with me, carried me through it. My soul and body were salved and wrapped and carried to a place of healing, not knowing whether there would be a bodily healing or not. And they gave the innkeeper the money to let me stay and heal the brokenness.

If my greatest heart's desire has been to know God, and see God and hear God, how well has the God of the universe treated me?

The Lord is close to the brokenhearted
    and saves those who are crushed in spirit.

























































*Tisha B'Av  (lit. "the ninth of Av") (Hebrewתשעה באב‎ or ט׳ באב) is an annual fast day in Judaism which commemorates the anniversary of a number of disasters in Jewish history, primarily the destruction of both the First and Second Temples in Jerusalem.

Thursday, February 5, 2015

Titled: Profound Messages From My Hair Guy

Recently, my husband has been quietly correcting me on "time" questions.

If someone were to ask me, "when did you start treatment?" I would answer "last year".  

He pulls me aside and says "it was January, 2012".  

If someone were to question when I last worked at my job, I'd answer "last year".  

He tells me sideways that I really haven't worked since the end of 2011.  (we don't count those couple of weeks when I tried to work after I was diagnosed and quickly slid into heavy multi-appointment weeks and chemo and study drug tests...)  

If someone said "remember when we went out to dinner at that fabulous winery?"  I would sadly say before thinking "that was just last year, right?"  

Sometimes, he just looks at the people talking to me and implores them to understand without saying anything at all. 

The truth is that in my brain anything 2011, 2012, 2013 is all "last year".  

My internal-brain-clock has stopped.  

Or at least, warped.  

I feel like I have lost huge chunks of time, and still, my internal ticking clock is not keeping time properly.  There is no longer an innate, steady, rhythmic tick-tock alerting me to the change in the seasons, the change in the months, the change in the days.  

I often ask Scott in the middle of doing something "what day is it again?"  I suddenly want to make sure we are getting groceries on the proper day, or abruptly make sure I don't miss an appointment that I had forgotten.   

There is no longer a rhythm to life - no rhythm to the age-old "five on, two off" of the work week; no rhythm of eating or sleeping or exercising or working.  

Most days I happily go about life and living, not aware of what it is that has stopped within me, or aware of what has warped inside of me.  

I keep a calendar on the table and write down things as I go.  

Or not.  

This month I completely lost the darned thing until Scott just found it for me a couple of days ago.  

It seems like much of the recent past is shrouded in a mist, locked in a time-mystery as to the "whens" and the "wheres" of events the last three years.  And even though the present is not as foggy, I am still struggling to get my brain into working order.  

At my last oncologist appointment, I again asked my dear doctor if she thought I could be starting early onset Alzheimer's.  She laughed, and said "no, dear Karen.  It will happen, it will happen."  

I smiled weakly back at her.  

I'm not so sure.  

***

As many of you know, I am a great fan of literature.  I like *good* books.  I don't care so much for current authors, but always loved the great writers of history.  

Ahem.  At least I would have told you that "last year".  I haven't read a complete book for over three years going now.  

Even so, I can remember much of my life by the genre of the books I was reading -- I can remember our simple life in the small town of Nankin and some parts of the childhoods of my children due to the summer I read "Uncle Tom's Cabin".  

It touched the deepest part of my soul, and changed something inside of me forever.  

It made me hold my children closer.  It made me realize on a deeper level the wrongs of slavery; the wrongs of human beings intent on building themselves on the backs of others no matter how much those backs bowed or broke; the wrongs of enslaving anyone at anytime - whether because you paid money for them or you took control of their life financially in other ways.  

Simply, it made me realize on a current level how blessed our simple home was, how blessed our meager finances were as a young family trying to hold on during the recession of the early 80's, how blessed it was that we were born free.  

I remember holding my children so close that summer and I remember the little walks to the bookmobile with them, hoping they would find books that could open their eyes deeply as well.

I remember my fascination with Jayne Austin, and reading 'Pride and Prejudice' while watching my daughters starting to date.  I remember how deeply the story-line of a gentrified family demoted to poverty tagged me as we had just lost everything in a house fire while my husband was a full time student having gone back to school after being injured in a car accident.  At the time, I was working full time making $14,000 a year - with three teenagers needing lots and lots and lots of things.  

We had swung from being the family of a decently paid welder with good medical benefits and a decent yearly Christmas bonus, enabling a stay-at-home-mum if we were all careful with the finances -- to a family suddenly swung under the poverty level and a mum no longer able to provide the daily stability under the stress of a perfectionistic-employer.  

A lot of our friends were moving into the decade of their lives where they were building their dream homes, buying a nice second car, doing sweet vacations -- we were trying to figure out how we were going to pay for three pairs of sporting events shoes the following school year.    

Pride and Prejudice is a simple old style romance to many, but to me, it was a deeply moving lesson on keeping your chin up even when everyone says your life looks completely lacking in most things.  It made me pray fervently that my kids would not feel cheated in life by circumstances that none of us could control - but rather that they would grow up knowing that "things" are not what holds life together. 

My decade of the Russain Authors still shapes me, still hangs with me even if I cannot remember some (most) of the plot lines, most of the authors names, most of the characters.  

I loved them so much and related to them so.  

Having said all of this about my favorite literature, you have to know that I love bookstores, libraries, bookshelves.  

And I am always, always on a relentless search of good book-ends to contain the line of stories on any given shelf.

I feel that way with this blog. It's time to put some bookends on it. Although, the fallout and aftereffects of chemo and radiation leave a long shadow over me, I have finished active treatment.

I do a lot of appointments still, am seeing new doctors too often for new problems that pop up, but that is all part of the fallout, part of the long shadow of 'after-treatment'

To bookend all of these stories, all of these subjects and sections and parts of my walk and journey and travail through cancer land, makes me realize it's not done, it's not over, but it has moved to a different part of the library.

I'm in a different section now. I need some bookends to make some differentiation.

My life has dramatically changed. I've had story-lines added and edited that I never thought, never imagined would end up on my bookshelf of life.

I'm hanging out on a completely different bookshelf, completely different part of the library than I was a short three years ago.

***

I finally got my hair cut last week.  

It was the first time since 2011 that I've had it cut.  

You read that right - I haven't had a haircut in over three years.  

When it started growing back after I was done with my "year of chemo", I suspect because of the radiation treatments that followed, it was rather 'scant'.  I have always been *blessed* with extra thick, extra wavy/curly hair.  

Not now.  

Those that have had chemo, know that the last place to fully grow in completely is a rather large area above your forehead. It's kind of like male-pattern-baldness, only you're a woman, making it not so acceptable.  

I've worn hats constantly for two and a half years.  Just the past couple of months when my hair started to get thicker and much longer did I try to stop the habit of grabbing a hat every time I left the house.  

The male-pattern-baldness had finally gone from scant, to fine, to filled in.  

I wasn't so afraid of sunburning my scalp.  My eyes didn't seem to need the double protection of big sunglasses and a hat brim as much.  Maybe the body-poisoning, body-changing, chemo effects were finally, slowly leaving my skin, my eyes, my body, if not my brain yet.  

But to be honest, hat-grabbing was a difficult habit to let go.  

In fact, I felt quite naked without a hat. I was surprised at how accustomed I had come to wearing one all the time. All. the. time.

It had become my "new-normal".

I find myself living in a continual state of "new normal". 

***

I smiled really big when I saw my hair-guy Don. It had been a long, long time.

Truth be told, I have never been the kind of customer that any hair salon could build a good clientele base around. I would go faithfully every four months for a color and trim for stretches of time, then decide to grow it out for a while and not see Don for a good ten months maybe.

But whether I showed up monthly or a scant twice a year with horribly trimmed bangs done by my own shaky hands, he welcomed me like I was a Cadillac client.

I like to talk to him. We talk about business and how his business is going. We talk about philosophy and what needs to be fixed in the world. But mostly, we talk about God.

Don and I share a quirky, different viewpoint on God, the Bible, worship, prayer, and very few like to take off on tangents that are seldom talked about in the realms of Christianity, but so important, and Don is one of those people.

I love to talk with him.

While I was in treatment, he would pray with Scott every time Scott went in for his cuts. I mean like spontaneously, openly in the middle of the salon, grab hold of his hands and pray with him.

When I finally showed up again after a long, long hair hiatus, Don gave me a big hug. He talked to me about chemo curls. He talked to me about the new texture of my hair, and how it didn't seem to have enough *integrity* to do a color job on it.

He gave me an honest assessment. I told him about the growing out process and how my son in law had given me some hair wax and shown me how to use it on short hair, and how I had marveled at how easy it was for men to get ready in the morning with a much easier hair routine.

I told him how just that past week I had started to use a curling wand again, and started using hair spray again.

He laughed and said he had kind of noticed that when washing my hair.

I tend to overuse that spray a bit maybe.

He took a good long time running his fingers through my hair, determining what it had lost, what could be done with it, and then he finally asked me "can I have free reign and give you the cut I think you need?"

Three years ago, I would have broken out in a cold sweat, laughed nervously and told him a polite yet strong "no!" I want my hair this way, I've had this hair for years and years and struggled with it for years and years and the thought that someone would once again give me a bad cut that makes me scream in front of a mirror for an extra 15 minutes every morning made my blood pressure shoot up quickly.

Three years ago anyways I needed total and complete control over my haircut no matter what anyone else said. I have survived a lot of bad cuts. A lot. It's difficult to find someone that understands curly, wavy, frizzy, unruly, three crowns hair.

I froze for just a moment. Maybe if I had just not brought out the hair spray last week, reminding my brain of what had been.

Then I quickly unfroze.

This time, I looked at him, smiled, and said "cut away oh great holder of the hair snipping shears!"

And he did.

While he was cutting, we of course got into our long theological discourses, and I told him how frustrated and angry I was some days because my brain wasn't working correctly. I told him how some days even though I am so thankful for being alive, I grieve when I realize how much I have lost. I told him, that I just don't seem to "fit" anywhere, anymore.

He cut. We talked. He told me some deeply personal things that made him tear up, and I told him some deeply personal things that made me tear up.

And then he put on some gel, used the hair dryer and handed me a mirror.

I turned around and looked at a short, curly hair cut. Completely different than what I had ever worn in my previous life. Completely different from anything I had done with my hair pre-cancer.

This was not a BC (before cancer) haircut.

But as my hair had taken it's good old time growing back out, I had done lots of different things with it, waxed it, gelled it, just plain old letting it do it's thing.

Then just that previous week, it had been long enough, unruly enough to make me step back into the old ways of styling again. Only it wasn't the same type of hair. It had really changed.

He watched me as I measured up the new cut, and said something very profound to me -- he said, "you know Karen, not every hair has to be in place".

Which is what I have done for years and years - every hair in place, sprayed, gelled, curled, steamed into submission.

Every. hair. in. place.

Always.

His words hit me like a ton of bricks. I eyed him and wondered if he realized what door he had just opened for me. I wondered if he knew that God himself had used his mouth to relay a very important message to me - a message that had been nagging at the edges of my mind, a message needing to break through, needing to be delivered to my now rather shallow, sluggish brain.

The ever so profound, so needed message delivered to me that bright sunny spring day: "every hair does not have to be in place." 

***

My brain may never work the same again. My fatigue may never go away. My body may never wake up without pain again.

But that's ok maybe.

It's going to be different. It's going to be way out of my comfort zone. It's going to be a different way of thinking, a different way of doing things.

My life is going to look really different.

But that's ok maybe.

Can I be a David promised to be king and then forced to hide out in caves for over a decade of time? Can I be a Sarah tied to an Abraham and move far from my previous life? Can I be a Joseph, touched by God, then thrown into a pit by those that should love me, and jailed by those that despised me, only to be rescued by a God that heard my cry?

Can I live on a different shelf? Can I be a different person than I thought I was? Can I be less smart and function and have worth and value?

Can I look in a mirror and realized I have aged twenty years in appearance, and forty years in my brain and still have a life?

Maybe I can.

Just maybe I can.

Because, you know Karen, every hair does not have to be in place. 

























Monday, April 14, 2014

P&P - pained and perturbed, parables and pardes

Our daughter and son-in-law bought us a magnolia tree a few years ago for our anniversary.  And oddly, even though this was not planned, it buds and almost blooms every year about the time of that special date.

We were worried when we planted it, as so many trees and bushes and plants have died in the severe clay soil we live on top of here in Cinnamon Lake. We think we were the reason Buff's nursery went out of business - they guaranteed their trees to live, and even though we took every precaution, there are admittedly only a select few trees that like clay soil.

They faithfully replaced the dead trees they had suggested for clay soil, until their doors closed.

I remember pulling one dead tree out when it was obvious it wasn't going to make it, and the roots were in a four foot wide swirling motion - they could not break out of the bowl we had made for it with good dirt into the cement-stiff clay.

We've spent a small fortune hauling in dirt to cover over the clay, and it works for a while, but eventually the blue-clay wins season after season.  I've developed a handful of perennials that like - or at least can withstand - the boggy wet clay in the spring, that turns into the cement-hard-dry clay in the summer.

We've worked around it.

So it's quite miraculous, today, I'm sitting here on my front porch, watching the Magnolia bloom.

It survived and seems happy to be here.  

It's a pleasure I thought might be denied me a short time ago.  A pleasure I wasn't sure I would have the ability to monitor throughout its life.

So, I'm sitting on my front porch on a warm, rainy, cloudy, gray day full of spring-time promise, surrounded by a Shalom that settles on me from time to time, and taking pleasure in watching my magnolia bloom out.

***

Honestly, where does the time go.  I think I was home a whole five days the month of March, and this month is not holding too many more "home-body" days.

I've had appointments.  And appointments.  And a few more coming up this week.  And the next.

Obviously, I was a bit more stricken with radiation than I ever thought.  I was the star pupil in radiation, the one that kept feeling better and better the five-plus weeks I was *radiating*, while all the other women were stepping down each week into the pit of fiery radiation burns.

I escaped those, so I thought I would escape the other radiation damage they warn you about as well.

I've never been more wrong in my life.  Week number 6 after week number 5 finishing radiation, I woke up with a chest that felt like it had been kicked in by a mule.

I called my radiation oncologist, and she laughed and murmured "we wondered when it would catch up to you, Karen".

I had felt so much better getting out of chemo, each week in radiation seemed like a step up to me. Since I take replacement thyroid meds I didn't have to deal with the effects of the radiation hitting the thyroid and wreaking havoc like all the other women were forced to deal with - it's the one time in my life I was thankful for a dead thyroid gland.  Radiated, scared and out of control thyroid tissue is not a good mate to walk through anything with.

If there was a frying and crackling going on in my soft tissue and cartilage in my rib cage during radiation, I never noticed it until it was frightfully non-ignorable.

Costochondritis is the term they use for BBQed ribs.

And unbeknownst to me, succumbing to a virus or two, or three can prompt an angry flare up.  Honestly, they probably told me this, I just didn't remember it.

So things like the following nicely composed table make it worse:

          • Sitting at a computer
          • Long drives in a vehicle- try to not "hunch" over the steering wheel
          • Weather-  rainy/humid weather makes a lot of people worse
          • Sneezing/coughing
          • Lifting heavy objects from the floor, or above your head
          • Repetitive motions such a vacuuming, mopping
          • Stress
          • Caffeine
That's a nice list, but what caught my notice was when I coughed or sneezed - which was a lot while tarrying in virus-land for three months after Christmas and the annual communal sharing of germs our family does so well and generously.  When I coughed or sneezed or breathed deeply, I was pretty sure my rib cage was cracking into bits and pieces.

I held a pillow to my chest to ward off the sharp pain.  It took great self-control to not hunch over and hold my ribs when out in public and caught unawares by a deep sneeze......

Deciding how to live with the above list was too much for my brain.  I have to drive an hour and forty minutes to get to my awesome physical therapist.  Then drive home, "hunched over a steering wheel", mostly undoing all of her awesome work.

No more sitting in front of a computer, and just for the record - rainy humid weather was what I have been praying for after the long, long freezing cold winter, slow traffic and slick roads.

And the final blow - no lifting *anything* - "remember a gallon of milk weighs 8 pounds, Karen"........

It all seems to conspire to land one in a state of frustrating despair and depression.

It seems like I am set back much further than I thought possible.

Pain can put one into slavery faster than anything known to humans.  I gave in, stopped life again, *rested* it, heated it, physical-therapied it, and stayed away from germs again to not anger it with more viruses or infections.

The inflamed area is no longer basketball size, now it's a more manageable feeling of being hit by a baseball in the ribs.

***

I want to be done with all of this.

More than being done, I want my brain to think again, and work again, and decipher life again, like it used to.

While talking to my Physical Therapist one day, I told her that one doctor had told me I 'couldn't force my brain to come back', and that trying might make it worse.

She paused a moment, and said "I don't agree with that".

I love her.

I told my daughter what my PT had said, and she said, "yeah, I think the same way".

She had a tumor removed from her brain, so she talks from experience.  Any time you mess around with the receptors and neurons and pathways of the brain, it changes you.

Any time you damage your brain either by opening it up and cutting into it or chemically poisoning it and damaging or destroying nerve endings and pathways, it changes you.

She knows more than most what it is to fight back through an intense jungle trail of brain-recovery while maintaining two active children and a household.

I've watched her and it's downright admirable.

So I also listen closely to what she says about it, and note how she has attempted "repair".

She gave me a book and told me that it was a good book and that I should read a chapter a day.

I laughed.  I can barely sit through most medical articles that are six paragraphs long.  And if I muddle through them, I mostly don't retain them or remember the bullet points.

She looked at me and said "it helps".

She said "a chapter a day".  I bartered - I said "maybe a page a day".

She looked at me and put the book in my hand.

I have read a chapter a week.  Because I have to go back and re-read what I have read because I don't remember why some things are happening in the book.

And I'm just finishing the prologue and chapter one here folks.

But she keeps asking me how I like the book, and I have to tell her - because she won't let me off the hook like everyone else - what is happening in the book.

I horribly butcher the few sentences I do say about it, but she says the book gets better.

A couple of months ago, my "book-club" friend wanted me to read a book she was reading, so Scott quickly jumped on that, paid Amazon twenty dollars and downloaded it for me.

I surprised myself and kept reading into chapter two over a few weeks time - all because the book made me angry.  It seemed like it was deceptively trying to disprove God, and the little innuendos made me angry, and forced me to look up and listen to some Bible and some Rabbis and their teachings on why I believe what I believe again.

It all surprised me.  As I was telling my PT this, she said, "oh, if you attach an emotion to reading, it helps you".

Hmm.....

We all need to bounce off of others, don't we?

***

Another blogger I read, probably the only other blog I somewhat read regularly, posted thoughts about dealing with people after you have been through chemo.  She stated how it was somewhat difficult to maintain connections and as if that wasn't difficult enough, just forget about planning how to keep connections strong.

She hit a tender nerve in me.

Every time I am in a room with a group of people I am overwhelmed.  I always forget how much multi-tasking conversation requires.

I was diagnosed with the inability to multi-task, and I am a believer in that diagnosis after a few kitchen disasters.  Pulling a simple meal together requires a lot of multi-tasking that you don't even notice - it becomes innate over the years.

I can't do that now.  Simple meals are not simple, nor should they be advertised as such.  A simple meal means putting the oven on 400 degrees, unwrapping a frozen pizza, and baking it.

Just don't forget to set the timer.

Or hurriedly use a dishtowel to pull out the over-baked thing, swishing the dishtowel against the oven burner, creating a little fire.

It's just the multi-tasking little things, folks.

But, even more difficult, is a human to human to human conversation - like a small group or such conversation. I am always like three sentences behind.

I used to be a mental conversationalist gymnast and need to wait for others to catch up to me most times.  I used to be able to read conversation cues, remember data that was imperatively important to any given conversation, what was sensitive, what had crushed them in life - I used to have all that rolling in my brain while conversing.  

Not anymore.  I don't remember the difficulty of conversations until I am knee deep in them. I desperately try to grasp the multi-tasking thread in my brain while looking at a person and spilling words out of my mouth, but the need of mental gymnastics eludes me.

I like talking to my grandchildren best.  My husband and kids are ultra patient.  And a friend that is a keen listener and patient with the short circuits still plaguing my brain.

If I am going to have to repair this, as it seems recovery of that brain part is elusive, then layering the learning to multi-task in conversations might well start chatting with children.

***

I am loving word pictures.  It seems if I can connect a picture to what I am learning, or relearning that it is a tremendous help.

Again, I am working on memorizing lists.  I have the exits on 315 in Columbus memorized to Kennair.  It's a picture in my mind that looks like text 'B'HNALK' - don't ask, for some reason it makes sense to me.  I have the exits on the northwest corner of 270 memorized until Rt 40.

Because a few sentences in a book riled me up a little, and I could not remember how to refute them, I have again memorized some Hebrew styles of teaching.

One list I have memorized is P&P - Parables and Pardes.

(Not to be confused with my state of mind, Pained and Perturbed.)

You might be surprised to learn that most, if not all of Jesus' parables were not new stories to his listeners.  In fact, the prodigal son parable was told by several different Rabbis before the time of Jesus, with different endings.

What would have caught the ear of the listener in the time of Jesus was not a new story being told, but the listener would pay keen attention to how this Rabbi would use this story to teach his students his "yoke" - what he believed to be true about the Bible and God.

The other part of the P&P is Pardes - which translated means 'orchard'.  It's also used as an acronym - and remember Hebrew does not use vowels so only the letters correspond PRDS.

  • Peshat (פְּשָׁט) — "plain" ("simple") or the direct meaning.[1]
  • Remez (רֶמֶז) — "hints" or the deep (allegoric: hidden or symbolic) meaning beyond just the literal sense.
  • Derash (דְּרַשׁ) — from Hebrew darash: "inquire" ("seek") — the comparative (midrashic) meaning, as given through similar occurrences.
  • Sod (סוֹד) (pronounced with a long O as in 'bone') — "secret" ("mystery") or the esoteric/mystical meaning, as given through inspiration or revelation.

Some have given serious study to the teachings of Jesus, and say that not only did he use parables to teach, but PRDS as well.

I have been musing over the R and the D part of the acronym.  When someone accuses Jesus of never coming out and just saying plainly that he was the son of God, they don't know the Rabbis method of teaching.  If you use Remez, he plainly states many times that he is the son of God.  But because we don't know that he is throwing you back to the Scripture - mainly because we don't know our Scripture - he says over and over and over again that he is the son of God.

That's why they wanted to stone him.

I mean say a little thing like "for I am humble of heart" and the hearers get openly violent tendencies kind of doesn't make sense to us.  Unless you understand that they knew their stuff and knew that the Messiah would be "a Moses" - "the most humble man ever to live on the earth".

Jesus openly compared himself to Moses, and by saying that they all knew that he was stating that he was Messiah.

That kind of goes over my head even when I am seeking it out.

The 'midrash' part is even more fascinating.  For instance, in the book I was tempestuously turning pages on, accused the Bible - Matthew to be exact - of lying.  Because as Matthew states:

21 And he rose and took the child and his mother and went to the land of Israel. 22 But when he heard that Archelaus was reigning over Judea in place of his father Herod, he was afraid to go there, and being warned in a dream he withdrew to the district of Galilee. 23 And he went and lived in a city called Nazareth, so that what was spoken by the prophets might be fulfilled, that he would be called a Nazarene.

Which is all fine and good - except as the author of the book pointed out - it doesn't say that ANYWHERE in the Old Testament.  Not anywhere.

And I was frustrated  because I knew the author was correct in that statement, but I couldn't remember why it all worked out.  So I had to look into it.

It's because of the 'D' - or the use of Midrash.

Nazarene / Nazareth comes from the same root word as 'branch'.  If you were an American living at that time, and someone said "He's from Nazareth", I would say, "oh that's nice - my cousin grew up there".

If you were a Jew living at that time, and someone said "He's from Nazareth" - your antennae would immediately go up because you would think "branchtown", he's claiming to be from branchtown -- you would think Isaiah - 'the branch (shoot) of Jesse'.

That's why Matthew stated that living in Nazareth fulfilled the words of the prophets, and no one argued it.  It would have been nice if he would have taken the time to explain it to all of the distant gentiles that would read that text one day, but he didn't, because obviously he felt comfortable enough to write that and know that everyone would "get it".

Like I get it when someone says "my bologna has a first name" and they don't finish the song - I know they mean O-s-c-a-r M-a-y-e-r bologna, because of a 1973 commercial song that still sticks in my brain.  (Some things are firmly planted in those brain cells that really don't need to be, hmm??)

Two thousand years from now, they might scratch their heads over the connection in my brain between bologna and Oscar Mayer.

So I am working on memorizing my lists, and am spending time especially on the Pardes.  The whole mind picture is beautiful to me - that the idea of learning and knowing the Scripture is likened to an orchard.

And unless you were an early 1800s pioneer stepping into the Ohio wilderness and happened upon an apple orchard planted by Johnny Appleseed, most orchards have to be planted, diligently watered, tended, pruned, harvested and also, enjoyed.

There's nothing more beautiful than an orchard in bloom.  The sweet smell from the petals that will develop into fruit is intoxicating.  There's nothing better than sitting beneath a fruit tree and eating the fruit that is fully ripened.

So, I turn that visual picture over and over in my brain while I work on memorizing it all, and love the picture of the orchard.  Of the need to work it, but also the need for its sustenance to my body.

And the beauty that is a well-tended orchard.

So I sit on my front porch and immensely enjoy a small flowering tree in my front yard that I have planted and pruned and tended, and I know those blooms are going to be frozen off tomorrow and all that hard work will result in possibly seeing only the first starts of the pink blooms today, but that's ok.

Today, I'm going to sit here and enjoy it.

It's all a parable and Pardes after all.