Yesterday I just sat on my couch and cried and cried.
It's the weirdest thing - the tears just pop out.
It's happened a couple of times recently. I keep flashing back to last year - it's not like I am just remembering - but it's interruptive flashes of "views" of my life last year popping up at the oddest times.
At least the parts I remember.
Last week I had a doctors appointment - again - and as I was driving on the interstate I was trying my best not to get distracted and end up going the wrong way on the wrong exit *again*, and yet I couldn't help but notice the beauty of the sunshine on the trees that have finally turned color here in my part of Ohio, and suddenly there were tears on my cheeks.
I was surprised and frustrated - I was planning on 'rewarding' myself for my doctor's appointment as I normally do and stop in at a Starbucks - and I couldn't do that very well with smeared mascara.
But the tears were there, I couldn't stop them, and I didn't know why they just popped out.
Then it hit me. A few times this fall I've had weird reactions to weird things, and it's like a flashback that I cannot explain to anyone.
This formula starting working out of my brain from somewhere: sunny fall day + beautiful changing leaves + interstate + comfy car = long drives home from chemo treatments.
Long drive home from chemo treatments = long, long, lonely days in bed trying to recover.
Even if I don't remember, my brain somehow does.
My sister from Oregon visits annually to care for my mother for three weeks every year in September for her birthday. Every time I thought of it in August, I had a huge hit of anxiety.
It's not what you think - my sister is a pleasure to be around. I could not, could not for the life of me figure out why I was so dreading the first week of September - and then it hit me - last September 7th, I started another round of chemo for three months.
I thought they might truly kill me with the last go around.
My last round of chemo was called "AC" and I remember telling the nurse going over the booklet with me that "after six months of weekly doses of three chemos - one of those chemos being taken for three days each week - this one can't be that bad, right?"
I remember her looking at me sideways.
All year I have been flashing back to last year in disjointed, odd bits of memory, but this fall has been a little worse. It's been flashbacks of laying in bed for days on end. It's been flashbacks of my throat and trachea and lungs hurting so bad.
The last rounds of chemo were given every three weeks, and after the first one I thought "hey, not so bad". Then a few days later my mouth broke out in sores, my esophagus felt like it had open sores the whole way down, my gastro-track considered permanently packing up and leaving, and there was a thrush-like rash all over my throat and mouth inside and out.
I could barely brush my teeth it hurt so bad. Which is saying a lot because I was brushing my teeth about, oh, say at least five times a day during the last chemo to get the nasty taste out of my mouth.
They fixed me up with antibiotics, gave me a numbing mouthwash which they told me to not only use as a mouthwash but also to swallow so it could numb my trachea, enabling me to keep eating, and it got better after ten days.
I wasn't all that crazy about getting into the car for that second round of chemo baptism.
The second treatment knocked me down a bit more, but I was thinking 'still not the worst anyways'. Then I got bronchitis with a cough that felt like someone was using a baby bottle brush on my yet unhealed esophagus every time I breathed. They put me on antibiotics again, I eventually climbed out of bed and recovered, but I was pretty sure I was not going to walk into that center again for my third of four treatments.
Every time I thought about it, I shuddered. Every time someone might mention it, my insides shrank back and I couldn't eat for a bit.
I walked through the door for the third treatment and my chemo nurses were like "you've had a hard time of it Karen" - so I'm guessing I looked just like I felt. ** (see below)
I can't remember when my red blood cells tanked so far that I needed another blood transfusion. I can't remember the total depths of my despair although I remember well my dread of that third and fourth treatment. I can't remember some of the drives to and from the treatment center, but warm sunshine in the same car with beautifully colored leaves makes my brain trigger enough to remember it.
So today, as I sat on the couch and Scott asked me one more time what I wanted to do for my birthday and I told him one more time, "this just feels good to me, just being here with you and not being sick", the tears started again.
My brain remembered very well that my birthday weekend last year was the last of my four dreaded chemo treatments. I don't remember it all, but I think I crawled into bed for four days and didn't move much.
I remember parts of the slow crawl back to trying to regain some strength after my body was reeling from nine months of chemo with a surgery in between it all somewhere. I remember the slow crawl back to trying to feel better and breathe deeply again. I remember slowly regaining and rebuilding my red blood cells. A huge victory a month later was being able to climb the stairs without stopping to sit down and rest at the top.
It took a good three weeks to recover enough that I didn't look and smell and feel like death, but for months afterward every time someone said the word "chemo", my body would involuntarily shudder.
I think back to that summery-hot day when my dear oncologist told me that she wanted to do the follow-up three-month round of chemo, and I was smitten, but I also thought, and even said out loud often "I can do anything for three months".
Those words don't trip out of my mouth anymore.
Looking back today, I was amazed how much Scott remembered that I didn't. I couldn't remember who my last chemo nurse was, then he reminded me that it was my dearest favorite, Abby, my first chemo nurse at the Stephanie Spielman Center when I switched there after the James was done with my initial first five weeks of the experimental drug study. Abby was the first nurse to give me my chemo treatment when I switched to the center in February of 2012.
Then, she was the last to administer it later that year in November.
I didn't remember that until Scott started prompting my brain a little, and reminded me of the hand sewn quilt they gave me, and reminded me of Abby's words.
She was young enough to be my daughter but she always called me "sweet Karen".
And then I shuddered again today.
I shudder every time I think on the months that I was literally destroyed to within two breaths of my life.
I don't remember it all very clearly so much, but my brain obviously does.
***
I've had several appointments the past couple of months. I had a spot on my 5th rib, sternum side, show up twice on follow up CT scans, and I was supposed to have another CT scan three months after the last one in August.
My brain and body did not want to do it. I know what the OSHA manual says about over-exposure to radiation. I know each CT scan is equivalent to 250 chest X-rays. I know you do not shed radiation.
I vainly thought I skipped through my radiation treatments the first two months of this year with little fallout, only to immediately afterward be veiled heavily within a shrouded fog that held me tight for months.
I wasn't able to think well. I was extremely and easily fatigued. Did I mention I wasn't able to think well?....... The fallout from radiation slammed me hard.
Late last summer I could feel myself start to climb out of the deep pit of fog and veils and start to feel more energy. I didn't feel like I was moving clouds of mist every time I tried to do something.
But my brain didn't seem to want to catch up.
A month ago I had a follow up appointment with my radiation-oncologist, and met with her 'fellow' first. I was one of that fellow's first patients when she started in February, my last couple of weeks of radiation, and she remembered me and took some time to catch up with me.
We went over my lingering pain. We went over my status of 'barbecued ribs', and the pain and soreness that radiation leaves behind in your muscle and cartilage for months and years.
We went over my last bone scan and subsequent CT.
We talked about the bone spot.
I told her that I had worked that out somewhat in my mind.
Having that *spot* that wasn't a fracture, wasn't arthritis, wasn't anything they could identify - having that left to hang over my head, not knowing if it would grow or disappear, if it would throw me back into chemo for the rest of my life or I would walk out from that scan breathing a deep, deep prayer of thanks - it took a little work and a lot of prayer to get to a point of acceptance and 'knowing'.
Knowing you might escape, or knowing you might be imprisoned for the rest of your life. Knowing you might get a good result because of a new chemo-drug test you volunteered for, or knowing that all the extra pain and suffering didn't do you any good. Knowing that if not this time, you stand a good realistic chance of it being next time.
The elation of beating cancer was greatly tempered this past spring and summer with the knowledge that I am high risk for recurrence, and then the ever pervading knowledge that there is a damned spot on my bone that they "are watching".
It all took a while to work out in my brain.
You have to or you curl up in bed and don't live your life given to you.
Then one of my favorite doctors ever, Dr. W., came in and did her exam. I told her I didn't want to do another CT scan. I told her I thought I was allergic to radiation - that it made me sick for a week after every scan. I told her that if the "spot" ended up being nothing, I would not survive all the extra radiation given me now.
She looked at me for a minute, uncrossed her arms and said "Karen, I wouldn't worry about it."
She really did.
She continued, "And I certainly would not be doing CT scans any closer than six months".
"Period".
She told me she had looked hard at my scans and that she saw what the radiologist and my oncologist were seeing, but that in her thinking, she wouldn't have me worrying about it.
Big sigh.
Big sigh followed by a lot of questions I didn't think to ask her until I was three hours out driving home.
I met with my oncologist a few weeks later and we talked it over. She laughed nervously when I told her I didn't know if I was brave enough to tell her I didn't want to do the three month follow up scan.
She considered it all and told me that Dr. W. was an expert in the field of radiology, and we would follow her lead.
We will wait until January to do the follow up scan.
***
All of my appointments the last two months have gone the same way - we talked about my swelling, my limitations, my bone bumps, all that I can talk about rather easily.
We talk rather seriously about the darned spot showing up on my 5th rib that is too small to biopsy.
All that is 'process-able' now.
Then we talked about my brain recovery and tears are immediately in my eyes. I tell them I can't deal with this. I can deal with all the rest that cancer and the subsequent treatment had done to me, but I can't deal with the brain-loss issues.
I'm tired of feeling overwhelmed. Overwhelmed everywhere that I am planted for more than 34 minutes. Overwhelmed in a store to the point that I have to leave and sit in the car for a while. Overwhelmed anytime there is more than one distraction to look at, listen to, react to.
I seem to have acquired a severe case of ADD.
I'm tired of having big gaps in my memory, big gaps in my math skills, big gaps in my reading cognition.
I told her I wasn't *smart* anymore, and then I started to cry.
I now know what those kids in elementary school felt like that had difficulty reading. I used to love doing speed-reading tests, and being one of the first ones to slam my book shut loudly because not only was I done, but I could answer all the questions - I had the cognitive skills to speed-read and understand it all.
I could never beat a couple of my friends that were even faster, but I never had any issue with reading. I'm a ferocious reader, and retain lots.
Or at least I used to.
Now I don't. I can't read more than two paragraphs without losing focus and understanding what I am reading.
Two paragraphs is an improvement - I couldn't read one paragraph in May.
If I open up an article to read it, I have learned to read the first paragraph and scan the rest - otherwise it's a long process of reading, leaving, reading a little more, forgetting, reading, forgetting and the frustration of it all just makes it mostly unpleasant.
A friend of mine just published her cancer experiences, and she said I should look into publishing my own blog posts. I couldn't tell her that I can't stand to read my old blog posts. I can't read more than a few paragraphs before I lose focus, and this is stuff that is me - it's my words - and yet I still can't do it.
***
The doctor I saw last week told me it was just going to take more time.
He patiently listened to me tell him my biggest fear - I'm not all there. Twice I have watched a DVRed show with Scott, then argued with him later in the week when I turn it back on again and he says "we watched that". I tell him we didn't, I keep telling him all through the show we didn't watch it, and then at the very end some phrase will pop up that makes me realize we maybe had watched it before.
I do not remember anything - anything about it until some phrase at the very end.
That chills me to my core.
But it has made watching old movies and reruns much more bearable.
If you visit us at our home, you may want to double check any dishes on which we serve you food. I am keeping track after the second time, but for three time - three times - I have put away dirty dishes out of the dishwasher.
Think on that a minute. After the first time, you kind of learn to double check the detergent thingy, wouldn't you think? The second time, you just should realize the dishes are not looking all that sparkly and your brain should make a connection like "hey - isn't this what happened before??"
The third time, you just sit down in a heap when you realize it eight hours later.
I have left food in the oven and not remembered it until I smell something awful when turning on the oven again a week later.
I've had some epic disasters in the kitchen, the latest being ruining a 4 pound beef roast that Scott had planned our meals around for a week. I can't cook or follow a recipe to save my life. I finally turned out a decent meal last week and I thought Scott was going to sit down and weep. It's been almost two years since I've had any kitchen experiences that were noteworthy.
Lucille Ball had more culinary success.
I decided to do a little cleaning, so I put some vinegar water into a kettle, and as I'm washing off surfaces, threw in some coins off of the top of the dryer that had detergent all over them thinking myself quite brilliant to soak off the detergent and clean them all in one process. Then, I promptly poured it all down the garbage disposal two hours later. Scott pulled out enough money to pay for three school lunches.
Everyone says they do the same thing. It's just fast acting chemo-induce-menopause. It's just getting older. It's just human.
But it's not the same. There's a hole there that feels completely different.
My doctor says my nerve endings are fried some from chemo and it will just take time for my brain to form new patterns, new connections.
My brain does not seem to be anyways interested in being an over-achiever with this feat it's supposed to be accomplishing.
He asked me a question - he said "do you realize you have used the word 'forced' twice in the last five minutes in relation to your brain recovery?"
He said you cannot, cannot force it.
Then I really started to cry and he handed me a tissue.
***
I have a new job.
I cried for two weeks when I had to give up my job that had been held open for me for well over a year, in May.
Honestly, it was three weeks. I had little idea how much of my identity was wrapped up in my employment.
So, the beginning of this school year I have three granddaughters that are now officially first graders. And the ones that live closest, needed reading volunteers for their class.
I raised my hand.
For an hour or so every Monday morning I go up to the school and listen to first graders come out to the hall and sit with me for a few minutes and read their books. I jump out of bed on Monday morning at 6am and yell to Scott - "I have to get ready for my job!!"
It's a great gig. I love it.
And the books they are reading. I don't think those were required books until I was in the third grade. There's none of that "see Spot run" in these first grade classes - there are some words I have to think a moment to sound out when reading them sideways.
I have to admit - I am looking over their shoulder and noting their learning process. I am watching and listening to their math skills. We sing-song count by fives and tens and twos every Monday morning when driving to school.
I am reminded that learning, or re-learning, is a layering process. And it can't jump from first grade to fifth grade in a month.
It can't be forced.
I have started to crochet. The feeling of your brain making your hands work is wonderful. I have pulled out and remade more doll dresses than I care to count. If you were to walk in my front door any given day, you might find me in a pile of yarn yanked out because the stitches were miscounted like 18 rows before.
But I keep doing it, keep working it, and the hand-brain connection seems to help.
At least it seems to be helping more than *luminosity* did.
***
I have thought about something I wrote down like two decades ago: "a change of clothes does not make a changed person".
So many times in my Christian communities I have been involved in, I have noticed that people come to a Savior that they see as wonderful, healing, helpful, life changing - they see all the glory all the love all the ideals of the Kingdom of God on earth and they are so happy to finally found a *home* for their soul if you will.
Then, they seem to forget all that and accept that yeah, Jesus was great and can do great things, but they stop there and never fully change their persons. Change their makeup. Change their drive. Change their ideals.
Change their core being.
If they had issues with strong or smart women before meeting Jesus, they can find a group within the church to hang out with that tells them how to do that even better and silence women.
If they dealt with the horrors of sexual abuse before meeting Jesus, they run to Him with arms open wide knowing they just found what they had been lacking in their deepest of souls. But later, when the weeding out and the healing get to be too cumbersome, and others in the church are just downright non-supportive, it gets laid aside, and instead of becoming a new being, a new 'temple', they are merely taught to put on a set of new clothes, trying to cover up the old with something new, instead of being encouraged and helped to become 'new'.
If they dealt with pride or anger or bossiness or shyness -- everything that they dealt with before can be easily and adequately covered over in the church with new clothes.
Yet, God seems to want something different.
It seems too often instead of starting something new and beautiful and building on it layer by layer, we too easily grab onto the easiest form of reformation - or rebuilding - we find a new set of clothes that fit and make believe we have truly become new, when we haven't. We just look better, but it's still the same crap inside.
SSDD. That's what the world calls it. (If you have to ask what that means, go work in an office for a while.)
I have been chewing over a study I was looking at a couple of weeks ago. It was talking about Abraham sending his servant, Eliezer, to find a wife for his son Isaac. The writer states that Abraham had a strong faith, but his servant did not. I had never thought that when reading the passage before, but went with it a little.
Eliezer seemed to think it impossible to fulfill his master's request, but Abraham promised that God would "happen" in this situation to make Eliezer's journey successful.
And here, I will let Rabbi Baruch tell the rest of the story:
"When Eliezer arrived at his destination, he beheld God’s choice for Isaac, Rebecca. The words of the Torah are most unusual when describing Eliezer’s reaction to seeing Rebecca.
“And the man is destroyed by her, made silent to know whether HaShem made his journey successful or not.” Genesis 24:21
Read this verse in your Bible and you will notice a significant difference. The first verb is usually rendered as “look steadfastly at her” or “was astonished by her“. The word however, literally means “to bring to destruction“, as demonstrated by its usage in Isaiah 6:11, where the verb is translated, “until the cities are laid waste“. The question that needs to be asked is simply, “what are the implications of the verse stating that Rebecca destroyed Eliezer?”
It has already been mentioned that Eliezer was not a man of faith. In other words, he doubted that Abraham’s command to travel to a distant city and find a woman who would leave her family, friends, and familiar surroundings to marry a man that she did not know or had even seen was going to be realized. Despite Eliezer’s lack of faith, he nevertheless prayed to the God of Abraham (see verse 12) that if HaShem did exist, then He should make clear to him who the right woman is. Eliezer even had a test to confirm whether God answered his prayer. Not only did Rebecca do exactly as Eliezer prayed, the text states that she, by her behavior, “destroyed” Eliezer. The intent of the verse is that Eliezer became a new man, a man of faith!
The message of this text is that Jesus does not want to change you, but destroy you and make you a new man! This is why Paul said, “If anyone should be in the Jesus, he becomes a new creation….” (See 2 Cor. 5:17). Even if you are a believer in Jesus, there are still things that God wants to destroy in your life so that you truly reflect the newness of Kingdom life. You may need to step out in faith like Eliezer did and serve your master, the Lord Yeshua, in order to see the changes that He wants to bring into your life. Be aware that God does not remodel, He builds on a new foundation.
I connected strongly to this in that I feel that I have been completely destroyed the past two years. Not only has my body been laid low and wasted, my thinking is not the same. I am not the same person in a lot of ways. In most ways. And yet, when all is lost, when I am destroyed, there is hope that God can use this, build this into something.
I struggle with the building as much as I struggled with the destroying.
***
I cannot write this without saying how incredibly blessed I am. Destroyed, but blessed.
God has laid His hand on me, and walked by me, and is layering upon the brand new foundation new things. I still awake every morning and bless Him for being alive. I bless God for breathing into me the breath of life each day.
It's not something I take for granted now.
Maybe us-peoples walking through cancer-land understand the walk through the fire a little deeper than others, maybe we might understand being 'rended apart' a little deeper than others, I don't know, that might all be up for debate.
But what we might really know well, is being 'destroyed'. It's pretty difficult to walk through almost two years of diagnosis, treatment and recovery and not especially know about being 'destroyed'.
To be destroyed, and to be less in many areas - yet to feel so blessed and so full for life and so open to life now is beyond me to describe or to detail, but it's true.
I have been destroyed, yet layer by layer God builds and gives and helps and heals and binds.
And makes me so incredibly happy to be here to celebrate this birthday.
**This is a link to the post for the miraculous things that happened that week before my third treatment - I had to look it up - I couldn't remember it all..... http://hiddenplacessongsofdeliverance.blogspot.com/2012/11/priestly-visits.html (but, I will never forget the trip with Polly, the woman who sought me out and breathed on me the courage to continue.)
