Always, always, somewhere in the study information, is a paragraph like this:
..."The median survival for metastatic triple-negative breast cancer patients is historically nine months." ...
I know my doctors are closely watching me this next year. I know there is huge danger lurking about in the corners of my body cells. I see them hiding out - hiding their Nazi sympathizer flags - just waiting for the right moment in time to unfurl them from their windows again. I know the lovers of chaos are nearby, even though I am rejoicing in my recovery.
It's like living in a nice home two blocks away from a violent ghetto - you know one day your good body cells could easily meet up with ones that hate you and intend evil for you.
It's like living two doors down from Saddam Hussein - you can live a good life, but know the plastic-people-shredder is being used every day, and one day it may be your turn......
Sometimes, I can read through those phrases quickly. Sometimes, like today, I have to sit and think a little, grieve a little. I have to lean back in my chair and step out of the role. I usually turn on my play list and turn my eyes off of the screen in front of me, and onto a God in heaven that hears me.
I think about friends that have prayed me through the worst of this valley and say to me "God has healed you - we are praying against recurrence" and I trust them to do that for me. I think about the known medical facts and the cautions that all my doctors have given to me "to get here fast" if I think anything is amiss.
I think about the facts, the ice-cold, hard, sterile medical facts.
Then I think about a God that can do the impossible. That has done the impossible.
These last few weeks have truly been a time of great enjoyment for me. I am so glad that God has brought me through this journey without resentment and the other baggage you can so easily pick up - the things you can pick up that use up so much energy. Anger. Hurt. Pain. Resentment. God has protected me from those - made a path through those as they popped up this past year - so I don't carry them now.
The first two weeks after my last radiation dose felt like I was walking in ecstasy. It felt like I was moving about in the most beautiful garden and every sense was alive and I could not drink up enough with my eyes - the look of pure delight in my grandchildren's eyes is a field of beautiful blooms uncontested.
My ears delighted in every sound made - the voice of my son talking about our new "project"; the voice of my daughter finding her way after some difficult medical news of her own; my eldest daughter telling me the good news of a wee one's growth - it was all so musical to my ears.
The idea that I was here - here on this earth - to live in this moment, this point in time, took on enormous meaning to me. With the word "metastatic" in front of the words of my diagnosis, there was no guarantee that I was going to be here this February to celebrate a "last day of treatment". It didn't guarantee that all the days, weeks, months, then a year lost to legal, honest medical poisoning was going to give me the bonus of living beyond.
I remember asking God, begging God one day in November to not let me die without hair. One would think that after eleven months of not having hair would make it not matter so much - and one would be correct. You get used to it, it's not all that important after other news you absorb within your treatment.
But the last go around of chemo was so hard, it made me so sick, that I wasn't sure I was going to make it through. I wasn't sure I wanted to continue. I wasn't sure I could walk through those doors and do one more almost lethal injection of poison after the first three months of this series of chemo left me pretty close to dead. I looked skeletal I looked as hollow as I felt. I couldn't think, couldn't cope, couldn't exert enough energy to move much.
I looked in the mirror, saw all of that, remembered the couple of times that I had awakened with a gasp because I was afraid that my dream of falling, my dream of breathing too little was real - I remembered waking up and taking deep cleansing breaths to remind myself that I was still alive; but that day I looked in the mirror and I asked God to not let me die without hair and eyelashes, because I wanted my husband and children to remember me alive - not skeletal.
Looking back, it was probably not my most "spiritual" prayer. It was one that was earnest and heart felt, and it made perfect sense at the time.
***
My journey through radiation was a bit of a puzzlement to my doctors and myself - the further I got away from chemo, the more I kept feeling better and better. Traditionally, medically, radiation is supposed to knock you down a bit. It's supposed to make you feel fatigue, and your skin is supposed to go a little crazy because it has issues with being baked. But instead of the downward swing - I kept feeling better.
Come to find out, part of that reason was the fact that I am on thyroid replacement meds. During radiation they hit at least half of your thyroid or maybe most of it depending on your lymph node involvement causing it to cough a little and maybe stop working. At best, for most people, your thyroid has to take time to readjust to radiation taking out some or most of its working apparatus. My thyroid was "killed" several years ago - and I already rode that thyroid roller coaster through hell - the extreme highs and lows and the great need to find stable footing to rest your body function on - all that I have already been through.
And sadly, there are those around me that remember that craziness. Literally, craziness.
Having done all that a while ago - making me the star pupil in radiation - my thyroid wasn't coughing, it wasn't shrieking, it wasn't dipping and spiking and causing all kinds of issues because it couldn't. I didn't even have to get on the roller coaster - instead, my body could take the leisurely water ride in the inner-tube down this river named "radiation-poisoning".
My thyroid replacement pills that I have rued so many times causing all kinds of c.r.a.z.y emotions, body turmoil, clouds, fog and dust, had been adjusted multiple times - already taming the beast.
I'm the only one graduating the radiation program in my group that didn't need to have a TSH level done in a few weeks - well I just did, but it was through my endocrinologist, not my radiation doctor.
While watching the other ladies step down a little bit each week, I have to say with a little bit of rapture, it was refreshing to not be on that train. There were side effects - one does not escape radiation poisoning ever - but my thyroid was not invited to that party, making the party a lot more fun.
***
And please do not misunderstand - this is NOT to say I have escaped the whole radiation fallout.
The whole fatigue thing has caught up with me - I can literally fall asleep if I sit down or lie on the couch at any point in the day. If I sit down to look at facebook - whammo - my eyes are closed, I'm asleep. Open up email - whammo - I don't even get the first one read. I leave a window open when I drive.....
And this is the most tremendous thing of all - it's the first time in fifteen years that I have not needed sleep meds to give me six hours of sleep at night. So all my time online replying to emails, texting, etc, due to insomnia are actually used to well, um, sleep!
It's quite an idea my body is having a difficult time adjusting to. And I'm having difficulty fitting correspondence and such into a day not suited to sitting. Because apparently sitting in front of a computer improperly is contributing to my muscle and everything else damage so says my physical therapists. I looked at facebook last night for the first time in quite a while, and I've missed a lot there friends! I have 252 emails to weed out and some of them that I shared with Scott last night made us laugh quite a bit - I need to catch up if for no other reason than to take time to laugh and marvel each day.
And see what's on sale at Old Navy two weeks ago......
***
We did something very impromptu President's Day weekend - we went and stayed a few days with friends. One day longer than we originally planned.
So there! sluggish brain that thinks too much and not enough about making decisions.
It was the best medicine. Their home is calming, clean, and just comfortable. We ate out, went to Ikea, then went to an antique mall that not even I, the great junk-store-shopper-extraordinaire could make it through - it was huge. Like massive. Like if I spent four months there I would still not have explored every stall, every dish, every fifty year old coffee pot.
It feels so good to get out. It feels so good to sit in a restaurant and not have to wonder if their possible lack of good kitchen hygiene could be my ultimate undoing.
When I saw my oncologist a couple of weeks ago, she sat down beside me in one of the patient chairs and asked me how I was doing. I leaned into her because I know that she is the one soul on this earth that has held my very life in her caring hands this past year and more, and I told her quietly, "I think the chemo is slowly leaving my body."
"I think I am on the road to recovery".
She smiled at me, and said "yes, yes you are".
***
So as I sit here a bit sedate with the "short-life-of-metastatic-triple-negative-article" information and remembering the words of my doctor this week explaining to me again why they do not want to remove my port for a good long time, I listen to my "fighter-playlist" that has been my mainstay a lot of days, and reflect some on my journey.
I am at high risk for recurrence. I have done everything I can to not have recurrence, including two different study drugs, radiation, extra chemo, etc, etc, etc, and adding that all up makes me less likely to recur. On the other hand, this type of cancer has a strong desire to recur - especially within the first 11 months. So every swelling, every bump, every odd thing that happens on my body this next year is greatly examined, studied, and considered for further tests.
While I know that my body was declared "cancer free" at the end of treatment, I also know that there are errant cancer cells just waiting to bust out and wreak havoc again if given the chance. You don't have to delve too deeply into history to see that truth in any society once war breaks out or the good, beneficial social systems break down -- there are loads of evil "cells" just waiting to burst out and take over.
Apparently, my body is akin to Germany and Japan directly after WWII - needing to tread carefully while it starts to rebuild and seek out the evils that caused such demise and smoother it out. Smite it. Knock it out. No Nazi flags in post-war-Germany.
I truly believe that God has set us upon this life to "journey it" - to walk it, to start at one point and not stay there, but to get on, get walking, get involved in your journey.
That means you have to own your journey. All of it.
One of the things about North American Christianity that has bugged me for years and years and years and years is the fact that we cannot "do suffering". We cannot "do hardship". We cannot walk dark valleys and scale treacherous mountains - and if we do - if we must - we don't talk about it until we are over the difficulty and can look back and smooth over the precipices, smooth over the bogs of deep muck and life-sucking-mud, smooth over the soul-questioning, soul-seeking doubts and fears and emptiness.
We don't talk about it all until we can nicely tie it all up with a pretty pink bow. It all needs a good summarization - a "testimony of faith", a "bragging" point of almost prideful, willful "this is how I did it" - kind of sounding like you led God, not like God led you.
We don't talk about the huge unattended and sloppy manure pit that had to be cleaned out and hauled away. We don't tell how deep the manure was in the barn and how difficult it was to get that out of each stall. We don't talk about the nasty, deadly odors that occur along the way - none of that gets much mention.
We just point to a sweet smelling barn that flows with wonderful beds of fresh straw and the sweet aroma of hay in each feeding trough.
But because we cheat the story, because we don't tell it all, and we certainly don't tell it unless we can tie that pretty pink ribbon around it - we cheat the One leading us on this journey.
We just put nice clean smelling barns on the farm tour and neglect to tell how much work is involved in the process.
If we don't tell the story of the trenches, we cheat the One leading us in battle of the total victory.
And I don't mean you get so entrenched in the slop that you cannot take joy in the moment of awakening each morning, realizing you are still alive. I don't mean you live negatively, with hostility and resentment. I don't mean you live your life feeling cheated because you don't get what others have.
I do mean, we each have our own journey that God has started us on, and if we cover it with pretty ribbons and refuse to let the enormity and the horror and the wretchedness of parts of that journey to be told, then we cannot fully claim to have arrived on the other side because we have denied the fight.
It's like saying we went to war and the sleeping arrangements were fluffy, soft beds - when in reality we all pretty much know the best they might have had was sandbags, or a bunk if you were lucky.
Every story about war that I have read - whether the French and Indian War, or the battles in Iraq, all have one recurring theme - you not only suffer in wars because of fighting and bullets flying about, but you suffer because of hardship as well. Eating and sleeping and bodily care all are part of the story - because the worse it was and the more it is told - the more we marvel at the feats accomplished, and the more we weep at the suffering.
The more honest the soldier about the truth in the trenches, the more we like and admire their stories of their journeys.
No matter the outcome of the story - if it was victory - we rejoice. If it was defeat, we sorrow with them. If it was horror, we circle around and hold close. If it was difficulty, we thank God in heaven above that He kept them.
And grieve for those not able to tell their stories of their journeys.
Not so much when it comes to the North American Christians.
From what I hear, it appears we are only to tell the stories that make everyone rejoice. And even then, if you cannot tie it all up with a bow to make it look nice - don't tell it.
Because we cannot tell how awful it was, we cannot tell how much we suffered, we cannot tell any of it and if we do, it must be tied up with a cutesy little bow that says "oh, it wasn't so bad, it was all for good", and it sounds so fake that we walk away from them and don't want to listen any longer.
We cannot say "God set us on this journey, and I don't have all the answers, but I know that I know that I know that even in the awful, even in the stench, even in the bloodiness of the battle, God was there."
Period.
I honestly don't know what Bible the pink-bow-people read. God goes to great lengths to show us person after person after person that suffered - without any pink bows put on those stories.
Alarmingly, I hear Christian folks say that those people whose stories were laid out before us in print in the Bible - were "not equal to us". They were "less" because most of those stories happened before the advent of the Messiah.
To me, I am left unsettled in my soul after hearing such things and I am uncomfortable before God until I beg Him to see us in our stupidity in not knowing our Scriptures well enough to respect these ones that had their lives laid bare for all to read - the good and the bad. And the ugly.
They suffered, and God said their faith and their obedience was enough.
Sometimes, stories of our journeys have silver linings. Sometimes, those need to be told to encourage faith and hope and to revive weary souls.
Sometimes, we don't know the whys of our journeys, and yet those stories need to be told as well. Many, many, many crisis of faith are not known because the sufferers feel they have to be suffered alone.
Shame on us. Shame on us for being fake. For living falsely before God and the world. For misrepresenting a God urging us on our journey, and when we don't wish it, or when we want to not go, we just get out some pretty ribbons to dress it all up.
***
One might surmise from all of this that I am a bit grumpy. One would be surmising correctly. I want to be doing things I can't do yet. I want to be feeling better than I am now. Scott keeps reminding me that it will take time - and I'm not sure I want to give that time to a slow recovery in some areas.
I'm grumpy because when I went to Walmart this week, people stared. I know it's my choice to wear a wig or not, but so help me, Columbus folks don't stare. I'm grumpy because I want more energy to do things after 3pm in the afternoon. I'm grumpy because I want my brain to be able to do some mental gymnastics. I'm grumpy because I have to stare a long time at spreadsheets to understand them now.
I used to create them - now it's not easy to read them.
After I made it through the bogs, the deep valleys, the fear the hurt the pain - one would think the downhill slope would be the easiest of all. And it is - except for little comments from doctors that remind me I am still under their care for a good long while yet. Except for the cording in my arm that limits me no matter how hard I work it. Except for the lymphedema - the swelling - that I did everything to avoid - everything - finally hit when I worked a little outside one day.
They said not to do that again for a while.... They said anything can make it happen and nothing can make it happen. They said to remove all allergens and to be extra careful around knives and not to cut myself on anything.
They said radiation provokes it, making it probably the reason it is bothering me now.....
I don't want this now. I've got a basement to clean out. I've got grandkids to lift. I've got things to type at a keyboard.
God woke me up on a few scriptures over and over while I have my online Bible whispering to me at night. One story was the story of Elijah after he had called down fire and rain from heaven - all that fanfare and glory flying in the face of the evil king and queen.
The next day he runs for his very life in fear.
The other story that God tapped me on the shoulder making sure I heard it a few times was Hezekiah. He was sick in bed and begged God for his life. God had mercy on him and gave him fifteen more years. Then, then, Hezekiah accepted the envoys from the king of Babylon and showed them all that the kingdom owned. All of it.
The Bible says the ending of his story like this:
16 Then Isaiah said to Hezekiah, “Hear the word of the Lord: 17 The time will surely come when everything in your palace, and all that your predecessors have stored up until this day, will be carried off to Babylon. Nothing will be left, says the Lord. 18 And some of your descendants, your own flesh and blood who will be born to you, will be taken away, and they will become eunuchs in the palace of the king of Babylon.”
19 “The word of the Lord you have spoken is good,” Hezekiah replied. For he thought, “Will there not be peace and security in my lifetime?”
So, I have determined in my mind that the easiest time to fall into great fear and great sin is after the euphoria of triumph. And I think on it every time when I, like Elijah, want to go get my running shoes.
I have just walked out of a valley that some did not. I have just been given more than I was supposed to have. And I get grumpy over the little things??!! I want to run away like Elijah and hide out for a while??!!
And I don't even, don't even, want to think like Hezekiah did after God did a great work in him.
So, I pray God uses me for good. I pray that my disappointments and fear and feeling down after a great battle do not lead me into sin. Do not lead me into not caring. Do not lead me into the same old, same old.
Because He just led me by the hand through something most don't survive.
I need to work at the patience. At the slugging of the boots in the mud at this moment. It's not a soul sucking mud - it's just the irritation of it all.
I have learned so much. And most important of all, is that God wants the whole story. The gore, the yuck, the euphoria, the ecstasy and above all else, the honesty of it all.
So along with all the other prayers pouring forth out of my soul trapped under impatient, muddy moods, I pray that I don't wait to talk about it all until I can tie it all up with a pretty pink bow on it.
As much as I have avoided it, my body is pouting. And it's not pretty at all.....
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