The Lord said, “Go out and stand on the mountain in the presence of the Lord, for the Lord is about to pass by.”
Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.
Then a voice said to him, “What are you doing here, Elijah?”
I have some really good news - but hold that thought.
You have to agree, the picture of the port posted above is downright ugly. It's more than that. When it was placed, it wasn't placed correctly.
Supposedly, most women have certain 'considerations' on these port placements - considerations like DON'T PUT IT RIGHT UNDER THE BRA STRAP AREA. Or, considerations like MAKE SURE THAT STITCH YOU PUT IN TO HOLD IT IN THE VEIN OVER YOUR COLLAR BONE DOESN'T TUG EVERY TIME YOU MOVE. Or, considerations like, PLACE IT UNDER SOME FAT SO IT DOESN'T STICK OUT SO FAR.
At OSU, the surgical teams no longer do the minor surgery to place a port - they leave that up to the radiology department somehow.
I waited and waited and waited and waited the day of my port placement, and they finally took me into a room that had very little in common with a surgical operating room. I had not eaten or drank for a good long time made longer by delays, and it all went south the longer the day went.
They had promised me Versaid, one of the nicest twilight drugs available anywhere, anytime; yet when they cut into my flesh, then my major vein to place this dang thing, my blood pressure tanked, and I. got. nothing.
No sweet twilight sleep that you wake up from and feel like you just walked through a meadow full of daisies. No twilight anything. No.
Instead, I turned my head to watch the monitors and talked to the "surgical-inserter" during the whole procedure.
My blood pressure was even unhappier than my Versaid deprived brain.
I'm thinking, according to my then in-the-midst-of-chemo-blood-pressure, you should not withhold liquids for that long from a woman who was accustomed to drinking a gallon of water a day. And that is not an exaggeration for that time.
I drank a lot of water. Lots and lots. And I had had none for almost 24 hours by the time the delayed procedure began.
The whole procedure was fine, even without the Versaid, although it did cause a little anxiety when they called another person into the already crowded little room to monitor my blood pressure.
Obviously there was a little anxiety all around the room, because later that year, even my surgeon stepped out of the *all-doctors-code* of "never say anything about another doctor's work" mode and asked me one time "how in the world did I get the worst port placement ever?"
***
I have hated it since day one. It hurt when I slept. It hurt when I wore a shirt that touched my collar bone where the tubing inside that main artery goes over the bone. The shirt collar seam would rub it too tight and make it throb.
I've cut some holes in a few shirts to give it some non-rubbing breathing room.
If I do any kind of energetic walking, it throbs to the point that it feels like it might explode.
They've checked it. And flushed it and flushed it and flushed it until I think there might be an actual scarred hole there - like the hole in your ear from piercing.
They've commented the holding stitch does stick out oddly. They've commented that maybe my veins are smaller and don't accommodate it as well.
They told me after the first couple of months of chemo, that a port would be a good idea, as they could easily scar up the veins in my arms too much. Since I was in a study, they usually accessed both arms for blood draws those first several weeks, so I concurred that there could be vein damage piling up.
But, but, but always in the back of my mind was the thought -- if they are afraid of the access and chemo damaging the veins in my arm - does it really make sense to just go ahead and access the main highway in the vascular system - you know that vein that can cause stroke if it gets scarred and blocked?
They assured me there had been many studies done on this possible risk, and that although there were risks, this was best for a prolonged chemo regimen.
Huh.
Huh?
So the port went in, not happily, and it ended up with a lot of blue bruising around it, and from that day forward, we have not been friends.
When talking with my oncologist at one point, she told me that she would like it to stay in for two years.
Two years post treatment.
When finishing up treatment last winter, having lost substantial weight, the thing stuck out farther than the Star Trek uniform buttons. I would press it and repeat "beam me up, Scotty". You could easily see it under most shirts. I was afraid that if my fingernail caught it in the shower, I would rip it out too easily and bleed out too quickly.
My imagination works well even while not reading murder mysteries......
Knowing we had to work together for two more years, new-and-improved Power Port and I kind of called an uneasy truce.
I would not sleep on it, put pressure on it with clothes, or exercise vigorously if it would just nicely stay in place and not fall apart with any little bump from little heads sitting on my lap.
***
So, I saw my radiologist oncologist a while back, and after she looked over my CT scan, and we talked about the tiny bump there that is causing discussions I would rather not have, she asked me about my port and wondered why I still had it in when it was problematic.
I told her it was staying in a while longer.
She told me "get it out, Karen. Just get it out".
I was like, really? Really? when they are watching a small spot on my bone I can still get it out?
Quite frankly, I didn't believe it could happen until that spot was determined to definitely not be a problem.
When I visited with my oncologist this past appointment, while she was doing the examination, she said "Let's get this out".
It was like Christmas and New Year's and birthdays and magic all together in one sentence.
Because removing that port means so much more than the fact that I am getting that most uncomfortable thing out of my chest.
It means, it means - when she says it, my main oncologist, the one that takes responsibility for my welfare, the one that is ultimately tagged as my main health-cancer-caretaker now - when she says it, it means, "you're not going to need it soon".
That's the really good news.
***
On my cancer sites, there is much discussion on when you are truly declared "cancer free". Some people believe you never truly are. Some people believe you carry around that loaded gun for the rest of your life and it could go off at any given moment and rapidly propel you back into the dreaded world of chemo wards and survival tactics.
Triple Negative Breast Cancer is definitely a foe you do not take lightly, nor are you able to ever forget that it has you in its grip.
Some women are told they are "survivors" on day one of their treatment - meaning they are not only fighting cancer day one, but they are also surviving it starting at that moment.
I like that.
But, that's not the same as being cancer-free.
Laymen like to use the term "remission" for the idea that your cancer is beat down and you no longer need chemo to spank it into submission.
I've not heard that word used in my cancer-world.
The current medical term that is used around me and is on the cancer sites a lot now is "NED". No Evidence of Disease.
That's my moniker now - NED.
Kind of, until that bone spot clears up or grows.
It could be there, it could pop up and strike again quickly and deadly, it could be rallying around and rising up as I type, but for the time being, they can kind of call me NED.
And honestly, for all I know, it could also be tamed. It could have been eradicated. It could also have the DNA 'switch' turned off since I did the experimental study drug. It could betray all stats for stage 3 TNBC and not recur at all.
Either way, I am now kind of NED.
'Kind of', until I get that "all clear" CT scan.
So, while those words hold such momentous meaning and feel like good news, they also mock a little in that you get the slightest feeling that 'no evidence of disease' could also mean that a doctor leaves a door open to let the medical facility off the hook if you get to your next appointment and everyone says "WOW! How did that happen so fast?"
"We're not seeing any evidence of disease, but it could be there none-the-less"......
So, "no evidence of disease" sounds good to my ears, but doesn't sit so well in my soul at times.
In my mind I have toyed over and over with the idea of when do I walk away from this and say "it's behind me?"
Part of the problem with this type of cancer is that it's never really behind you completely.
So in my mind, I toy over with the idea of how do I know it's time to celebrate?
And don't get me wrong - we have celebrated many milestones. Many "HURRAYS!" and, many "THIS IS FINALLY DONE!" parties.
I finished chemo - YAY!
I survived surgery - little hurray. Really, you don't celebrate that one all that much....
I finished and survived chemo again - WHEW!
I finished radiation - double YAY!
My brain fog has lifted some - Good News!
But none of that ever felt like I was done. Like I could finally say, this part of my life has been put to bed, maybe for a while, maybe forever.
I couldn't ever say that, because, that port was still in there.
So when dear Dr. M. said "let's get that out", I smiled really, really, really big.
We all knew what that meant.
***
A couple of weeks ago Scott and I went to "Amish Country" to a seminar produced by the Amish people there to hear and see Ray Vander Laan.
Three years ago in March, we made that same pilgrimage. I had to sit in the car for a while during part of the seminar on Saturday, and couldn't make it back Sunday, because that week I got sick. I had "episodes" of severe diarrhea and nausea, then would miraculously feel better within an hour.
It reminded me of morning sickness in a way.
My glands become swollen. I was concerned about the glands in my neck being swollen and not going down. The glands in my stomach and groin area were swollen. I wondered after a while if I had mono. I wondered if our water was contaminated since they were running all new pipes in our community. I wondered a lot of things, but never got a definite diagnosis.
I just didn't feel good for three months - then it just all seemed to go away.
Then in late summer, I had a hot lump in my armpit that my obgyn thought might be an infection from shaving, but told me to make sure that I didn't miss my annual mammogram.
I scheduled my annual mammogram which ended up being in January as they were so backlogged, and I was not too concerned as I had a history of "lumps and bumps".
In late November, a hard lump showed up on my chest wall between my collar bone and my left breast.
I still could not believe it was anything other than clogged lymph glands, as that is what I had been told for quite a while, but when I called and told the lady scheduling the mammogram that I had a lump to look at, she was more concerned than me, and rescheduled me for December "to get me in quicker".
On December 22nd, I had my mammogram, and the nurse took me immediately to the ultrasound room.
In the ultrasound room, I saw what she was looking for - lumps in my breast, a lump in my armpit, a lump on my chest wall.
She grabbed a radiologist who looked at the ultrasound and I tried to get some answers from him, but he was in a hurry, and told me I needed a surgeon and quickly left the room.
I still remember sitting in that small dressing room knowing what I had seen on that ultrasound screen - I knew that it was cancer, and knew that not only was it cancer, but that it was a quickly moving cancer.
From March when I first got sick until December I had not been alarmed - I'd been diagnosed "auto-immune" for maybe over ten years, and that can mean anything can happen to your body and there are very few answers and you just get used to not having answers for odd things happening.
I sat in that dressing room, and I didn't cry, I didn't become frantic, I didn't pass out, but this 'knowing' possessed me deep inside, and I knew. I just knew.
But if I had to pinpoint a time when I think the cancer was first invading, first developing, first plotting a takeover and my demise, I would point to that week in March when my "three months of mysterious misery" disease started.
And it had all started that week that I sat at the Ray Vanderlaan conference.
***
Two weeks ago, I sat in that same building, and listened to the same speaker, and the words kept running through my mind "beginning and end". "Start, finish".
Alpha and Omega.
My friend sitting beside me leaned over and said "this is where it all began three years ago".....
She might have noticed a few tears on my cheek.
My body was remembering as well as me, and the feeling of putting "bookmarks" on this was overwhelming.
I listened as Ray once again described his lessons on suffering. He talks about journeying through the desert, not knowing when or where your next meal might come from or where your next drink might be found.
He talked about the "shade" - about how we read 'shade' in the Bible and think big oak or maple trees with lush grass underneath - and he showed us a picture of what 'shade' was to the Hebrews - a small tree not too much bigger than a bush, that doesn't necessarily cover a whole human being if they lay underneath it, and that little bit of shade doesn't have any lush grass under it, it hardly has anything but desert sand and dirt and stone.
He talked about journeying in the desert and the snakes and scorpions and wild animals that are all about you and how every step can be painful as the stones and rocks bruise the feet; how the time of suffering in the desert is not what we want or desire - but when we are in it how we need to walk it and realize it's not what we have been taught in Sunday school so many times. Rather a desert experience is just what it sounds like - it's suffering and difficulty and poisonous and treacherous and sometimes some don't make it. Sometimes, some quit. Sometimes, some are taken out not by anything they have done, but sometimes the wilderness is just too difficult.
It's not about putting a "sunshiny face" on difficult things - it's about realizing what the wilderness is, and realizing how to walk it.
Ray showed us slides of a "green pasture", a hillside that looked devoid of anything green, but a closer view showed small clumps of lonely green grasses spread sparsely over the desert hillside.
He said that was the green pasture the Psalmist talked about in the 23rd Psalm. He taught that we are rarely belly deep in alfalfa pastures like we like to imagine when reading that Psalm, but instead, we are lead to a sparse desert area eating small clumps of grass along the way.
He told us that each sheep seemed to get just enough.
He told us that each of us need to trust like that - trust that our Shepherd will lead us to green pastures that have just enough clumps of grass to fill us each day.
Not too long ago on one of his journeys there, he taped an Arab shepherd with his sheep. He showed us a sheepfold and the doorway or gate where the shepherd would stand or sleep, guarding the whole while against predators that would rip the sheep apart if allowed entrance.
He had video of how the shepherd would lead the sheep out daily and how they all followed his every step. On every steep path, every long go-around corner, every step of every day was directly behind the shepherd following his every footfall.
I get that. We've had enough wilderness experiences to know that you follow the Shepherd. Even if all looks steep and rocky, even if all looks barren, even if all looks lost, you follow the Shepherd.
Still vivid in my mind is the video he showed about a lost sheep out in the desert wilderness. The sheep would only bleet but wouldn't move. The video showed the shepherd coming over the hill, calling for the sheep the whole way, and even though you could tell the moment the sheep heard his call, the sheep wouldn't move. He showed the shepherd calling its name and getting closer and closer to the sheep, and still it wouldn't move.
The sheep could hear the shepherd, even see the shepherd after a time, but it would not move.
After seeing slide after slide of the shepherd getting closer, closer, finally the shepherd is close enough to pick up the sheep - pick up the sheep that would not listen to his voice and come to him when he called, pick up the sheep that would not move towards him, but would allow him to pick it up once the shepherd was close enough.
And I just sat there and wiped away tear after tear. We had walked that desert-wilderness experience for a season and it looked like we were coming out on the other side. We had walked it close on the heels of the shepherd, trying to step into His every footstep.
We had suffered for a time, and He had fed us clumps of grass the whole way. We never saw more than that day's clump of grass, we never saw the next hill, but we followed.
We were bruised and hurt and tumbled and scared. We were attacked and injured and scarred for life in some ways.
It's not something that I look back on and say joyfully "Oh, what a journey!" It's not something I can minimize and say "it wasn't that bad". It's not something that I think I can do easily next time, having survived and learned this one.
It was something that was so difficult, so dry, so sparse, so dangerous, that I wince every time I think on it.
Sometimes, a lot of times, we were that sheep standing so scared out there in that vast wilderness just bleeting and bleeting, hearing our shepherd's voice but not daring to move, not wanting to place one foot outside of what was safe at that very moment even when called into a safer, better place.
Sometimes it's really hard to realize you have been found, realize you have been saved.
I'm still pushing back veils of fog trying to find the correct footing on the easier part of this journey, but I've been promised that every step of this journey, every hurt, every tear, every difficult rocky path that looked too hard to get over, was not what I thought it was.
There were lessons along the way, deep valuable lessons that were impressed upon my heart and soul, but the lessons were not the reason.
There was pain beyond words that shrieked and whipped around my body and ripped at my person that twisted me, hurt me, shaped me, but the shrieking, twisting tornado of pain was not the reason.
There was earth shaking and earth shattering words that rocked our world and shook out anything not important; it changed our world forever, but the heaving and rocking and shaking of the earth beneath our feet was not the reason.
There was a fire that burned anything left, anything that we thought important, anything that we stupidly clung to, the fire burned the bits that we still clung to and they could be grasped no more.
It all seemed too much at times. The storms and earthquakes and fires seemed too destructive to survive.
But at the end, at the end, there was a silent, soft, blowing wind.
And maybe, the wind was the reason, because like Elijah, after all the violence and storms and ravaging fires going on around us and realizing that those were just the "stuffs" of life that a lot of people go through, a lot of people suffer through; but in the end, there has been a soft wind blowing asking me, "What are you doing here, Karen?"
***
After the conference I just wanted to sit and weep. I had heard the soft quiet wind, and had heard the question, and knew the answer.
The desert, the wilderness is not uncommon to humans. We can journey it, walk it however we choose - but all of us at one time or another get a chance to be in that wilderness. We do choose how we walk it, whether rebelling the whole way, or staying close on the heels of our Shepherd, trying to step in His very steps.
At different times in my life while walking the desert wilderness, I have hated it, rebelled against it, fought it the whole way. I have cursed it, cursed evil and the pain it inflicts. I have hissed at it and threatened to quit.
This time I watched the fury of the tornado, the earthquake and the fire while in the midst of it all, and towards the end, I felt the soft wind on my face even though I was broken and hurt and in pain.
But not lost. I know a Shepherd that looks for me when I am frozen in a spot, frozen in fear or pain or hurt or grief and He comes looking for me and doesn't stop until He finds me, picks me up and takes me back to the sheepfold to tend to my wounds.
Once again tonight I fast for a procedure tomorrow needing anesthetic, hoping that the medical team I meet when I walk through those doors at 10am is awake and confident in their skill-set.
In my mind tonight, there's a soft wind blowing and I hear the question again - "what are you doing here, Karen?"
It's a gentle wind.
***
By this time tomorrow if all goes well, all that will be left of the insistently contentious port will be another scar on my chest that will fade with time, but never disappear.
There will be a weakness and scarring on a most important vein in my body.
The scars remind me of the earthquakes and fires that I've survived. The scars that are on my body and on my spirit and on my soul that have been tended by a gentle Shepherd.
The scars of suffering and journeying, travailing in the desert.
And I'm glad I am here to feel one more scar, to feel that gentle wind, and have my soul be asked questions that seem unanswerable by earthly voices.
