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.