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.














Thursday, March 6, 2014

white circles, black blobs....

I've had a a few days in Columbus, touring my favorite doctors, my favorite treatment places for - get this - my ANNUAL check up with my surgeon amongst other appointments.  

Who thought I would hear those words again on the day of my diagnosis twenty-seven months ago - "annual mammogram and check up with my surgeon"?  

Also, because I'm in the midst of a little "tift" with Verizon, I've used up all of my Verizon minutes talking with doctors the past couple of weeks.  Trust me, Verizon, the great sub-contractor of the Anti-Christ, can soak you and then some, when you run out of minutes and you are unwilling to renew your contract....  

Since I am having this little tift with Verizon, I am pretty much off the grid for those days on the road.  Oddly, I can post a picture to Facebook, but not read posts.  Or more than one page of posts if I can get past the *security* warnings.....  

Emails are much the same way.  I still have over six hundred waiting for my indecisive brain to deal with in my in-box, and more pile up the longer I am away.  

I'm at what is hopefully the tail end of another virus which has lasted going on three weeks now, and with this virus that has targeted my throat and chest a new symptom popped up -- a hurtful, hold-the-left-side-of-my-chest-with-a-pillow-when-I-cough pain.  

Every time I coughed or sneezed or got up from a laying down position - I had to hold my chest because it *hurt*.  I was able to get in quickly at a quick-doctor-place they have now, and because the pain was only on my left side - my cancer side, he did a chest xray.  Because I had just had my port out two weeks before, he did blood work to make sure it wasn't a blood clot.  He did an ECG to make sure it wasn't my heart.  

It felt like my heart, or a cracked rib I had thought to myself, and was relieved when those all showed "normal".  

The pain starts at my fifth rib sternum and continues across my scar tissue to my underarm.  

The same fifth rib with the little spot that is too small to biopsy or diagnose.  

My feet were getting a little cold and my hands a little clammy.  

The Urgi-Care physician gave me a Z-Pack which relieved half of the symptoms and made the pain feel much better.  

When the Z-Pack ran out and the pain came back worse, I called back, and he obviously was way over our relationship.  He didn't want to touch me.  Not with a stethoscope, not with a needle, not with a script, not with a ten foot pole.

I told the lady who was taking and relaying messages that it felt like inflammation in my rib cartilage maybe - the kind of pain I felt after I finished radiation for a few weeks - could that be possible?  

She didn't know, all she knew is that I was supposed to call my oncologist.  

"Could I get one more script of antibiotics to see if that helps before I call?"

"No, call your oncologist."  

The rational part of my brain was saying - "it's inflammation in your rib cage - leftover damage from radiation that the virus has flared up".  

The bat-shit-crazy part of my brain was saying "why won't he treat me for one more week at least - what is he suspecting?"  

***

Since I had been "virusing", again, for almost three weeks, I was told it was by now probably post-nasal-drip, and to treat those symptoms and that I was not contagious.  

So I went to my *now* annual mammogram and appointment with my surgeon.  

At the Stephanie Spielman Center, they send you in for your mammogram, then a radiologist looks over it while you wait in the large mammogram waiting room to give you the "all clear".  When you get the All Clear, you are sent to another private waiting room while still in your nice thick white robe awaiting your appointment with your surgeon.  

It's all set up pretty slick and very protective of your modesty, even after half of Columbus has seen me half undressed the past couple of years.  

Only, I didn't get the All Clear from the radiologist while I sipped my complimentary bottle of water in the large mammogram waiting room.  

I got called back in for another mammogram.  

After the second round of films, the radiation technician just told me to wait in the mammogram room while she went and talked to the radiologist that was reviewing my films and deciding my future with one word.  

She came back in and took another set.  Then another.  

***

The mammogram waiting area is one of the most populated, loneliest places I have visited.  It's a room full of women in white robes and we're all there for the same reason, but suddenly the ones who have obviously been through treatments, are the biggest fear in the room for all others awaiting their annual good news.

It was a blessing she didn't send me back out to wait - I didn't want to sit under everyone's gaze.  I was the only one that I had noticed getting the 'return call'.  

She showed me the black blob inside the white circle on my chest wall that the radiologist was concerned about.  I could see all of my scans - she had four, maybe more screens in front of her with old views, new views, and circled views.  

She kept telling me she had to "press it out" - and it is just what it sounds like.  It was hurting like crazy as she was needing a picture of my chest wall muscle included in the scan and it was pulling on my scar tissue on the other side to do these, but by the third go-around I told her I didn't care - just "press it"!

It was a long two hour interval.  I texted a couple of friends that I think have the gift of healing and asked them to pray.  

If you wonder what does one think when one is confronted with the fact that you look like you are going back into treatment?  

My brain had quickly connected the dots that could be happening - I've had a cough since Christmas - could that be lung mets?  I've had pain in my bones - both rib and lower back - could that be bone mets?  My immune system seems low again.......  

So my first thought was?  "what in the world am I going to do with all that fabric I've been collecting and cutting?"  

Honest.  

Because, I can't let my brain go farther or I would sit and weep in a lonely room, with a radiation technician that is younger than my daughter who wouldn't know what to do or what to say to me.  

Because, I know that recurrence of this disease means either a "local recurrence" or a "metastatic occurrence" for the most part, one treatable with a possible remission, one treatable with no remission.  

Because - on the Triple Negative Breast Cancer page I am on, we seem to lose women every week that have recurred and sometimes quickly lose the battle.  

So when my brain said "what to do with the fabric collection?", I tried to think that one out.  

The other trails would take me down paths I couldn't go yet.  

If you are in the market for six inch wide strips of cut fabric that can be sewn into strip quilts or cut again and used for crocheted rag rugs, let me know.  I might think on you next March while I am sitting in the mammogram waiting room..... 

***

She finally came back in and said "that last one did it - you're clear!"  

She showed me the scan.  

I love it that they show me the scans.  I love it that they discuss them with me instead of leaving me in the dark "until I talk with my doctor" like most technicians do.  

I love it when I see a black blob finally "pressed out".  

I was sent to a late appointment with my surgeon and he told me the "good news" of my scans again, then I told him the "good news" that I'm sure most noted surgeons love to hear - that he, of all my medical people - was the one left to deal with me and my virus, my chest pain, my issues that most surgeons haven't dealt with since their residency.  

He thoroughly examined me, we chatted a little, he ruled out pneumonia, "bad" chest sounds, and the more we chatted, the clearer the picture became and he gave me a word for that pain - "costochondritis".  

It's an inflammation in the cartilage in between the ribs, due to radiation damage.  

Hmph.  

After washing his hands, then dousing his hands with sanitizer, he stood at the door, pulled his shirt up over his mouth and nose to keep away any possible wayward germs, and left me with a final word, a warning, that if the pain didn't clear up in two weeks I was going in for a CT scan.  

***

So today, I am holding a warm compress to my chest pain, and slurping NSAIDS.  

Scott kindly made me the same kind of warm compress that our son had made for him last year with his gall bladder pain - a sock filled with rice, warmed up in the microwave.  

Only, I didn't realize he had closed it with a twisty-tie when I put it back in the microwave for two minutes.  

It came out on fire.  Our whole house smelled like burnt popcorn. 

And burnt sock.

Honest.  

Scott put out the little fire, salvaged any rice he could, put it all in a new sock THAT WE TIED SHUT, and warmed it up again for me.  I slept with it all night, smelling like leftover burnt popcorn, and it feels better.  

Today, I am thankful for good news, for life, again.  

There are so many problems, so many bills, so many things stack up that it is possible at times to lose sight of the fact that God has blessed you with another day.  

I hear drips in my roof in the morning and worry.  I watch Scott shovel the driveway and worry.  I look at our checkbook and worry.  

Has not God shown me over and over and over and over again how He can and did take care of me in miraculous fashion and yet I fall into that daily "crap-trap" time after time after time and don't remember it all until I stare at a black blob with a white circle around it.  

***

I've been listening to Jesus' parables of late, as it is noted that through those He taught great things not known since the beginning of time.  

Because of this, I've heard the famous Beatitudes as the church calls them, time after time and I heard words I had memorized years ago, which are now foggy:  

"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear.  Is not life more than food, and the body more than clothes?  Matthew 6:25

"Can any one of you by worrying add a single hour to your life?"  Matthew 6:27


And then, there is this of course..........

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  Philippians 4:6

Cast all your anxiety on Him because He cares for you.  1 Peter 5:7

And, this.  

I will be like the dew to Israel; he will blossom like a lily.  Like a cedar of Lebanon he will send down his roots;   Hosea 14:5

Yet, all those good words, good knowledge, good food for my soul, I pushed aside finally while trying to assimilate back into what we call "daily life".  With daily life comes daily angsts, and with daily angsts comes daily forgetfulness of God's hand in my life.  

Until I see that black blob.  Then it all comes back into focus.  

***

I'm not accusing God of giving me a "wake up call".  I'm not accusing God of "making me sweat" so I will remember Him more clearly, better.  

Remember Him foremost. 

With this disease, I would be sitting in that room with these kinds of results, this kind of cage rattling, with or without God. 

So I sit there with this image popping up on my radiation screen, not angry, not surprised necessarily, not horrified, but trained to go to a hidden place, a deep garden, a place in a desperate wilderness where I see God burning before me more brightly than I can see Him during the day to day things that seem to cloak our awareness of a God that burns in our lives.  

While I wait in a lonely room for the worst possible news maybe, I can sit beside a spring that never fails, no matter which way the wind is blowing, which way the storm screams around me.  I can sit in the middle of a desperate wilderness, with the likeliness of finding water and food and shelter looking grim, and in that hidden place find myself sheltered, and fed and refreshed with a water that tastes like no other.  

It's not easy.  It's not what I want.  I don't like those dark moments of the soul when all around you is bleak and horrifyingly difficult.  

But I am thankful, that God is in the midst of the wilderness, that I camp under his cloud, with His fire burning bright in the darkness.  

It's possible with this disease that one day either that radiation technician or another doctor will probably come back into a room and give me different news.  

As I said, I don't like it.  Hell, I don't like anything about this disease, this continual reminder that I am mortal, frail, not in control, not able to be or do what I would like.  

I. don't. like. it.  

But I don't blame God, don't walk away from Him, don't fret that He is doing this to me for some unknown reason, some unknown discipline I need to learn. 

When I sit in the midst of black blobs surrounded by pointed white circles, I simply, humbly, open up the door to His garden, and know He is there, and whatever the situation in the desert, He will be a fire burning brightly before me. 

Always.   


 





















 

Thursday, February 6, 2014

One more scar......

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.






    












  




Thursday, January 16, 2014

Living way too loud

As I left the Stefanie Spielman Center yesterday around 5pm, the sun was weakly shining.

On the way down, it had been cloudy and spitting snow.

As hard as I try not to think about these every-three-months follow up appointments, as much as I remind myself that "it's just an appointment", as much as I pray, meditate, memorize, listen, learn, divert -- my brain still feels the need to sound big alarms.

They sneak up on me and grab me and usually the 24 hours before take off, I've got pre-flight jitters.

At that point, there's only a few ways my body likes to take care of the "jitters":

1.  Go and stay with some grandkids.  You can't think around them.  Only I couldn't, because I have still enough cold and cough and sniffles to not want to infect a five week old baby.

2.  Watching back to back episodes of Law and Order - and I do mean all day, back to back episodes.  It's the one thing I like about cable TV - every three months I can relieve my stressing brain by making it catch perverts or murderers.  And bonus points - I've found that having a good case of chemo brain makes all those episodes I've seen before almost all new!

3.  Going out with other folks and drinking a glass of wine which loosens my tongue enough to talk and laugh easier.  We all know I'm an introvert, so this is not my first "go-to" - but I know myself well enough to know this is what's best for my soul, my spirit, my body, my brain to do on those days.

4.  And the best one for me and my personality - engaging in deep, deep discussions about the Bible, God, Jesus and how does it really all work in this life?

I was blessed enough on Tuesday, to be able to do all three.  We met friends at the new Purple Grape in town and gave it our blessing by sitting there for hours talking about God.

That's after I had spent most of the day watching Benson and Olivia do their "thang".  (and if you have to ask who Benson and Olivia are, I'm not sure we can be friends.....)

I'm in a couple of cancer facebook groups.  A couple are private so you don't see my comments, which is a great relief to me as everyone around me deserves a break from "cancer-talk".  The groups are awesome, for just that reason - you can only "talk" this out with those around you so much, so long.  You need someone that "gets it" as well - and these ladies definitely "get it".

Privately get it.

I'm not the only one to pop up with pre-visit jitters.  And just for the record, since I brought up God already, pre-visit jitters are not "sinful", are not "lacking faith", are not the inability " to trust enough".  Pre-visit jitters is your body's way of reminding you that something horribly painful happened the last time your brain looked at that calendar and saw that appointment, and it's just telling you "there's a pattern here - let's pay attention and undo any unnecessary harm".  Meaning, if you were horribly hurt by another incident and your brain saw the same pattern churning around and popping up again - it tells you the same thing.

Pre-visit jitters signals to me that at least part of my brain is working and doing it's job....

The part I'm working on, is getting my brain to stop my body alarms from going all crazy, because in my mind, it's mostly ok.  The rest of my body just hasn't completely caught up yet.

Not that there isn't a stupid spot on a scan on a bone that is too small to biopsy and diagnose; not that those pains in my liver area can mean more than maybe a faulty gall bladder; not that this disease hasn't snuck up on me before.....

My brain goes crazy reminding me that I was shocked before with a visit down this road and I should be ready for shock again.

But, I do my brain and mind and soul homework, and get to a place where "it's ok".  I have to live, I have to laugh, I have to be able to get out of that spot of concern, and live.

I could take a couple of Ativan, and at least if my body continues to sound off alarms, I'm happy about it.  But, I haven't taken Ativan in a very long time, and I'm ok for the time, this time, working out the bugs.

Until I get on the road.

You are pretty much glued to one spot, with your brain turned on, and my sneaky brain takes every opportunity realizing it's at advantage once I merge onto that interstate.

The better days are when traffic is heavy and I really have to watch the car in front of me, the texter beside me, and the semi that is two hours behind schedule burning up the road a mile behind me.

But yesterday, even Columbus roads could not cough up any congestion.

For me, there's only one cure - loud music.  Like really, really, really loud music.  Like my ears are still ringing today loud music.  Like when I finally get off the interstate and pull up to a red light at a busy intersection, mothers with sleeping babies in the car next to me look over and frown.

I've used Christian music before, but it makes me cry, makes me feel too deeply, and I just can't afford to "go there" on that particular drive.

So it's the Beatles.  It's Led Zeppelin.  It's Elton John.  It's the old Pink Floyd.  Almost anything 60's or 70's.  The Eagles.  Doobie Brothers and of course the always loud and feel good CCR.  Much to my relief, Columbus has a couple of different stations that I can pick up thirty minutes into my drive that can play all of those in one car ride.

I mean really, other than the guitar intro that has to be heard at almost full volume, how can I argue these lyrics?

"Green River"

Well, take me back down where cool water flows, yeah.
Let me remember things I love,
Stoppin' at the log where catfish bite,
Walkin' along the river road at night,
Barefoot girls dancin' in the moonlight.

I can hear the bullfrog callin' me.
Wonder if my rope's still hangin' to the tree.
Love to kick my feet 'way down the shallow water.
Shoefly, dragonfly, get back t'your mother.
Pick up a flat rock, skip it across Green River.
Welllllll!
Come on home.

(for those of you not familiar with CCR, you'll know it when you hear it...  http://youtu.be/kpijXwXOCUo )


And I got there in good time.  No road troubles, no problems, I'm plenty early for my appointment.

I like it better when I have to throw my car in park and sprint into the building......
 
***

I know I've said it before maybe at least 5,487 times - but I love my oncologist.  Dr. Ewa Mrozik.  She's awesome, and I know she is the reason I am sitting here today.

As I stated, I'm on a couple of cancer pages, and one of those give links to lots of studies, lots of new drugs and new treatment plans for my particular cancer - Triple Negative.

Posted a while ago, was a little blurb from the big annual San Antonio Breast Cancer Symposium that is held every December where doctors, researchers, lab results and everything new in breast cancer is brought out and discussed for a few days, but a little blurb was posted about the use of the chemo drug Carbo for this particular cancer and having good results when used in tandem with other treatments.

She had me on that chemo two years ago.  She knew that before they talked about it at San Antonio just last December.  She is immersed in her literature, the latest trials, the biggest successes, and I love her for it.

And I will say this one more time, I think I am sitting here today because of that.  A lot of ladies don't just walk away from Stage 3 Triple Negative.

***

Anyways, my appointments went well.  They pulled blood for the study I am currently in, and even though I was a little concerned that my blood was really dark - almost blackish red - all my results - liver, red blood cells, white blood cells, anemia, almost all of it was in a "normal" range for the first time in a very long time.  (please, temper your applause, I do my thyroid numbers next week.... that nasty beast.)

But I repeat, mostly normal ranges for the first time in a long time.  Applause, applause.

I think I already knew that, because in my brain the ability to cry easily is closely related to low red blood cell counts, and my ability to cry over anything has slowed considerably.

Then I waited for Dr. M.

There's no radio in there.  Not really any good magazines unless I want to read about more cancer, which I shouldn't while waiting.  My "waiting-out-my-contract-replacement-phone" is a little lacking in the department of connecting to any diversionary apps.

I look around.  I pray over the conversations I can hear vaguely in other exam rooms.  I wait.

She walks in with the biggest smile.  And I know I'm reading her right in that she is relieved to see me.  Relieved to see one of her successes.

So far.

Sometimes we forget doctors are human, and the ones I know love to go to work and see the ones they have helped and healed.  So when I see her enter with a big smile, I know it's a good start.

I appreciate her open and honest face.  Maybe it would bother others and they would want a big smile every time, but I don't.  I want her to be intellectually honest and emotionally honest as well.

We talk about my scan that was put off three months ago until this month.

It's still not scheduled for this month.

We talked, she threw out her findings, her thinking, her knowledge, and I told her I still hated the idea of more radiation.  More radiation like the CT scan that's a power-ball of radiation.  More radiation like the nuclear scans.

It seems every time I step into a radiation room deep in the bowels of any facility, my brain goes to hell in a hand basket and is enshrouded in a deep fog for months afterwards.  So, I don't like the idea of what the radiation is doing to my body down the road, but I also don't like the connection in my brain - right or wrong - that the radiation puts me in a deep fog that takes weeks and months to climb out of.

She smiled at me, waiting for my answer.  I asked her "will I hate myself in the morning if I say 'wait' again?"

She's didn't grow up in this country, so that terminology wasn't immediately connecting with her, then she laughed and said she was ok with that decision, too.

***

She wanted to know how my "brain appointment" went.

It's a long horrible story better told on another day, but I told her my hopes I had for it, then my disappointment when it didn't help any.  It didn't help any, nor was I offered any help like I had been hoping would happen.

I told her that when the over four hours of testing were done, which totally burned any brain cells still working, that I finally talked to a psychologist, and she told me "you've been through a lot".

I knew that.

She told me she could prescribe me some antidepressants or anxiety meds.

I've done those before, and that's not what my anxiety is about.

My anxiety is about my fear that part of my brain is either missing or damaged or whatever the hell has happened to it, and no one can tell me anything to do for it, other than "wait".

The mid-thirties woman that I saw was smart, but I felt like she was no more in tune with "chemo-brain" problems than I am.

Maybe that's not fair.  At least, that wasn't her specialty.  And I left there with a hand written note that she passed over her desk to me as she said "since you probably will not remember any of our discussion"......

She noted to "not expect so much of myself".........

She told me not to try and multi-task - that obviously my brain couldn't do that now.  She told me she could tell I had high expectations for my brain, had high intellect, and was used to being able "to keep multiple balls in the air".

And now I couldn't, but that didn't mean I was not valuable.

If I were twenty years younger, maybe that would have helped me feel better.  But I already knew all of that.

All I want to know is how to repair.

And so far, no one quite has a specific road map for this particular journey.

So I told all of that to Dr. M.

She told me I seemed much better than I had just three months ago.  She told me that she didn't think I was realizing just how much better I was doing.

She told me I still had a ways to go and regaining this was not a gradual level climb, but rather it seemed to happen in spurts and to be patient and wait while the next spurt might be developing.

She says she realizes from getting to know me that I'm not a very good "waiter".

I love that woman.

***

I had a moment in time a while ago, that has re-affirmed what she told me.

We went out to eat with a group of people to celebrate a birthday.  We were sitting around a table and someone was telling a painful health story.  He stated he had two words to say to a somewhat uncaring, unsympathetic nurse.

I blurted out the two words I would have said in that given situation, and suddenly it was most hilarious.

If nothing else, good or bad, I have been a "blurter" all of my life.  It's gotten me into a bit of trouble at times, other times I can tell hilarious stories about my life that I shouldn't.  But get me involved in a good group of folks telling good stories, and I can blurt and either everyone laughs hilariously, or I spend three weeks doing damage control.

At this table, I once again "blurted", and this time it was hilarious.

But what one of my ears caught, what has stuck with me for a few weeks - was one of my friends clapping her hands and saying delightedly - "SHE'S BACK!"

Meaning, I had reached a spot in my recovery that they had coaxed me into for a very long time.

She said out loud - "SHE'S BACK!".

I think about that and smile over it every time, because to me, it's a point on this mysterious map that I've been trying very hard to get to.

And her comment meant that I was finding some landmarks through this maze and was partway there.

***

I smiled as I walked out into the parking lot after my appointment.

The sun was shining.

Even the traffic at 5pm was not as difficult as it can be at that time on 315/71 in Columbus each day.

I called Scott and told him about my appointment.

He started to cry.  He tells me for days before my appointment that everything is fine, there's no need to worry about it, when all the time he worries more than I do.

That drive has shocked him as well.  He has that same brain connection.

***

So, all this to say, for the time being, I'm good.

And smiling.

I still have what I call "fear and grieving days", and probably will for the rest of my life, but most days, the grieving door of my grief and fear room is closed and I can live.

And work out some brain damage.

I have various appointments lined up, and need to schedule more, but for now, I don't see my beloved doctor for another three months.

My brain can calm down for a while.

I'm good until April.

And I'm not kidding - when I got into the car and started it my radio was on way too loud, and this is the song that started......

You cannot, cannot turn the radio down when this one starts.

"leave that sinkin' ship behind...."  Today.  Leave it behind today.

"Up Around The Bend"

There's a place up ahead and I'm goin' just as fast as my feet can fly
Come away, come away if you're goin', leave the sinkin' ship behind.

Come on the risin' wind, we're goin' up around the bend.

Bring a song and a smile for the banjo, better get while the gettin's good,
Hitch a ride to the end of the highway where the neons turn to wood.

You can ponder perpetual motion, fix your mind on a crystal day,
Always time for a good conversation, there's an ear for what you say.

Catch a ride to the end of the highway and we'll meet by the big red tree,
There's a place up ahead and I'm goin', come along, come along with me.


http://youtu.be/EkjtklIJdLM



















Tuesday, January 14, 2014

He loves to sit with me

He says he knows the moment he knew he first loved me.  He says it was the summer I was going into 7th grade, and he was going into 8th.

My uncle had died and we stopped at my younger brother's baseball game on the way home from the funeral.

He happened to be there.  He was always at the baseball field.

He says he watched me walk across the ball-field in my bare feet and short purple mini-dress.  He remembers how the dress was tied in the back.  He remembers the colors in the dress.  He remembers my long, dark, curly hair falling over my face as I watched my steps in my bare feet.

He remembers I stood at the edge of the ball field and watched the ball game as I felt a little out of place being there in a dress.  He didn't know it was much better for me to stand there alone than to stay in the car with my parents.

We had grown up in the same small community, but I'm not sure we were even aware of each other until Junior High.  Our three small rural village schools consolidated into one larger school at the start of seventh grade.  There were more buses in that small parking lot after school than any of us had seen together before in our lives.

I was sitting, leaning up against steps with some new friends I had met that day, when a tall, skinny kid came over and asked me if I wanted to "go with" Scott Gerwig.

I was totally confused, and not quite sure who this tall skinny kid was, or who 'he' was.  Being greatly encouraged by my friends, I said "maybe".  The tall skinny kid then said "he saved a seat for you on the bus".

The bus routes for our school district were long and laborious.  My basic bus ride home from that day forward was approximately an hour long.  The buses at the Junior High would take you to the high school where everyone changed buses to get on the bus taking you home.

This busing system created a moment of time when the twenty minute bus ride from the Junior High to the High School  was nothing but insane pubescence.  It was a welcome time of no high school kids flaunting their superior strength stomping down smaller weaker ones.  It was loud immature boys making stupid jokes.  It was loud immature girls pretending and creating drama.  They packed us in like sardines and you prayed that someone saved you a seat.  The bus ride to the junior high that morning had been an eye-opening education for me after the uber-controlled safety of all my elementary school bus rides.

And here I was sitting on a bus with a boy that wanted to kiss me on the lips at the end of the bus ride.

I didn't let him kiss me on the lips the whole three months we "went together" that year.

(Ok, there was the one time we sat together at the fall dance that I let him kiss me.)

I hardly looked at him, I was so shy.  We barely talked.

But he tells me he was smitten.

I asked him a while ago why he stayed with me that first time we were so young together - he was a year older, a year 'more worldly', talkative, popular with his friends and always playing sports; and I didn't talk, didn't interact a whole lot, looking back I could not have seemed all that interesting, yet we were considered "a couple" as you could only be in Junior High - and I asked him why he was ok with that.

He told me he just liked to sit with me.  

***

He told me the other day as he was starting laundry, and I was apologizing for being an insanely stupid person for not having that done, he told me that he "liked to take care of me".

That's a far cry from our early married years.  Not that he was negligent, but I married a 'jock'.  We were at ball games sometimes three and four nights a week.

It's not a great environment for young kids, that often.  They play in the sand and stones in front of the bleachers that old men spit in before climbing up and sitting down.  The same stone and sand that dogs peed in while sitting with their owners.  The sand and stones that sometimes didn't get washed off with rain for weeks.

We rarely had a washer and dryer that worked in tandem.  Those days, the laundry duties were all mine.  When the dryer would quit again, I hung out loads and loads and loads of laundry, begging them to dry.

One of our children had such sensitive skin that she could not wear Pampers, could not wear Luvs, nor Huggies, without developing open sores.  I washed loads of diapers daily - twice in hot water to make sure there were no lingering allergens - and would dry them over the heating vents of our house.  Someone once gave me a bag of cloth diapers and I almost kissed them, as it meant I had more diapers in the rotation, and could maybe get to work without having to start the second load to soak.

Through the lens of that viewpoint, our lives have changed dramatically.  After spending lifetimes at ball fields and gyms, we rarely go now.  We don't watch it on tv all that much.

Our laundry barely makes three loads a week.

Scott was brought up short several years ago when friends brought pictures of all the parties our church group had done when our kids were little.  As we looked over them, I would be in some of the pictures - always alone.

He asked "where was I?"  and I looked at him sideways, because he never quite realized really how much he missed when he was coaching.  He never quite realized how many times I went 'alone' to any event.  How many times he missed his kids' events, even though he tried like crazy to get to a lot of them.

As time went on, our work schedules were not similar very often.  I usually attended my events alone, he attended his alone, and it was all ok.

***

After our children grew up and left home and we went through the usual post-children-marital-wrestling that most couples do when faced with the fact that their job of nurturing and helping and promoting and just being there for their children almost non-stop was done.

We were suddenly dropped into a different world.  We grieved our child-less home.  We had so loved being parents and enjoyed the pleasure of young ones in the home.

Then we discovered, we really enjoyed being with each other again.

We enjoyed gardening together.  We enjoyed trying new restaurants together.  He loved grocery stores, and I would tag along and pick out new fruits to try while he excitedly spent a whole paycheck when swiping his card at the register.

After too many years of too many stresses and hurts and agonies and pain and sorrows, we learned the art of relaxing.

We would garden, make a pretty spot, and sip coffee there in the morning-hours before leaving for work.

He loved to watch sunsets and would beg me to come sit with him in what I aptly named "mosquito-park".  He didn't mind when I would go out in 90 degree heat with long pants, socks, shoes, long sleeves, and a hat trying to avoid bites.  Those pesky little creatures for some reason loved me, not him so much.

I looked like a homeless bag lady, kind of killing the mood of summer nights, wine, relaxation and bliss, but he didn't care as long as I would "just sit with him" long into the dark.

***

He took me to my first day of doctor's appointments at the Stefanie Spielman Center / OSU in Columbus.

He sat with me through the different appointments that day, watching each doctor examine me, watching each one tell me news that fell like bricks on top of us, watching me ask questions and receive answers that we didn't really completely understand at the time, but that I understood enough to know I was in a bit of trouble.  

He sat with me in my robe in some of the waiting rooms as all the other husbands were doing with their loved ones as well.  He held my hand.

He kept lifting my chin so I would look at him when he talked to me.  He knew he couldn't let me go too deep into my 'head-down-thinking-mode' that day or I might never come back out of myself.

When they asked me to get into a study and told me it would be four days a week for the next four to five weeks, I looked at him knowing I needed the study drug, but knowing I also needed a driver.

We had timed our drive that morning and found we live one hour and forty minutes away.

He never blinked, never wavered, never questioned, never hesitated.

He said we could be there.  Four days a week chemo at the main campus OSU/James for the next five weeks.

He has a job.  He teaches.  Every day.  He doesn't call off on sick days except for when he is really, really sick.   He had some sick days saved up, but as I quickly tallied up the days in my head that this treatment was going to require the next six months, I knew he was going to miss too much work.

***

He sat at the foot of my bed in the Phase One Study Drug wing at OSU/James while they brought in a caddy full of blood tubes and prepared my arms for the onslaught of needle sticks for the next five weeks.

He hates needles.  I've sat by his bedside making him look at me while he was poked and stuck multiple times the past ten years for all of his surgeries and illnesses.

He watched as they put that first stint in each arm to open and shut for my blood draws that day.  And we both watched with an odd knowing that after the first needle stick, our lives would never be the same.

Not ever again.

We had no idea how much everything would change.

That first day, he sat at the foot of my bed, we chatted with the nurses, I openly admired their ability to pop up my veins that were always a bit reluctant when doing all of my thyroid blood draws, and then they started the blood pulls.

A nurse entered the room with large syringes and a few bags, starting an IV.

Then they brought in that first bag of chemo.  I was sitting up in the bed watching their every move, watching them prepare the drugs and drips.  I don't think anyone can ever get themselves ready for a treatment that will alter their life in a few day's time.

I know I couldn't.

I had never cried with medical issues - I get frustrated, I get irritated, I get tired of them, but no tears.  After the pre-treatment drugs were started, the chemo drip began.

There was one quiet tear on my cheek.  I looked over at Scott sitting quietly at the foot of the bed in that small room, and there was one quiet tear on his cheek.  We both watched, then we both looked away.

We sat together in that room and watched, then realized we couldn't watch any longer.

We were forever changed.

***

The Bible says that when you marry, you should become "one flesh".

We might have messed up a lot of things in our lives, but we have accomplished this at least.

When he hurts, I hurt.  When I hurt, he hurts.

He took off most of those first five weeks and stayed with me in Columbus.  He had understanding employers that could see his deep pain, and knew that he needed to be there with me, and they let him take that time.

He took off the following Wednesdays every week to take me for my weekly chemo treatments.  We became best friends with our chemo nurses.  We loved them and loved how they treated us and answered our every question.

He sat with me and hugged me and cried with me every time I was denied my chemo treatment because of low blood counts.  He took over the job of listening to the medical instructions and explanations, and although he didn't do it as well as I used to do it, he would take notes and make sure I called in on the correct days, took my meds correctly, understood how to protect my blood counts by staying away from germs.

He quickly learned that my worst day after chemo was Friday, and took that day off also to care for me, to make sure I didn't fall, didn't forget my nausea meds, didn't have to crawl back to bed unassisted.  

The man that didn't care a whole lot about the medical field, quickly learned terms and conditions that were suddenly important - he learned that I had difficult reactions to the steroids they pumped into me each time, and he learned to watch for that steroid withdrawal that was always so difficult for me approximately thirty hours after treatment.

He would notice my tremors and shaking and would get me into bed quickly and cover me with all the blankets he could find in the house while my body shook with iceland-cold and fever while the steroids leaving my body allowed the full impact of the three days of chemo to rise up and slap me hard.

He listened so closely to my doctor and chemo nurses that he timed my oral chemo for each of those three days almost to the very minute.

We both dreaded the extra Carbo chemo treatment every three weeks that was added to the once a week Taxal and the three-day-per-week-chemo-regimen.  As if the other chemos were not enough, Carbo felt like a three-pronged rake had been dragged through my intestinal track.  I was pretty sure there was not any lining left in my mouth, esophagus, stomach, intestines - not any lining anywhere for any protection from poison rushing through you.

The last couple of months of that first set of chemo seemed like time stopped.  It seemed like there was nothing in life other than spending our days injecting, ingesting, and recovering.  That's all we did.

I started to feel my feet fry.  Then my hands.  And I was pretty sure my brain was on fire, burning.   They all felt like there were hot needles being poked in and sometimes steps felt like I was only pushing those needles in further.

For the first time in my life, my steps became uncertain and painful.  For the first time in my life, I came down stairs one at a time, clinging to a hand rail so I wouldn't fall.  For the first time in my life, I had to stop halfway up the steps and sit down and rest, as my red blood cells were screaming for oxygen with any little exertion.

Stairs are especially difficult when your red blood cells bottom out.

He would find me sometimes at the top of the stairs laying back where I just needed to stop and rest for a bit to not push my heart too hard when it was taxed, and he would sit down beside me.

He would watch me closely the weeks that I missed treatments - once I had to miss two weeks of treatments and get a blood transfusion to bring up my sagging red blood count - and he watched me come miraculously back to life, miraculously begin to smile and joke and laugh again, miraculously be able to start simple tasks again - and he would walk in the door after work and smile really big as he listened to my too loud music, too loud tredmill-walking-bragging, too much life all of a sudden.
He would be so happy, but then he would subtly remind me that I had to go back.  

He would never let me quit.  Not that I wanted to quit, but when I had forgotten how good it felt to feel better, I found that I was reluctant to submit myself again to the great pit of awfulness that my chemo regimen swung me into.

I finished that chemo regimen in June, had surgery in July, and at my follow up appointment with my oncologist the beginning of August, she told me that she wanted me to do three more months of chemo.

We both felt like we had not heard her correctly.  We both felt like we had just been punched in the gut.  We both were not sure how we were going to get through this.

My body felt weak and ravaged.  I was pretty sure my bones and teeth were hollow, and that there was not one inch of muscle mass left within me.  My hair had just begun to grow back.

He sat there beside me in that exam room, he looked at me, I looked at him, and we told her we would be there.

We agreed with her, and he scheduled his days off again.  He had very few left, but insisted that he could - and would - drive me, sit with me and take care of me again for this chemo go-around every three weeks.

I secretly thought it would not be that difficult after what I had been through the first six months of that year, that every three weeks sounded easy after doing chemo previously for three days each week.

I started the chemo, and it didn't seem that bad.  Then, I contracted every germ within a five mile radius.  He took care of me and sat with me for two weeks.  He ran to the pharmacy for me day after day after day.

He missed some work again.

He took me to the second of four chemo cycles.  It hit me a little harder, but still I didn't think it was that bad, then again, I came down with a bronchial infection.  He took care of me for two weeks again.

My body seemed to be all spent out.  It seemed to have nothing left of any value to counteract anything.

I didn't think I could go back for the last two treatments.  I argued that this round of chemo had seemed almost "optional" and that it probably wouldn't make that much difference if I didn't finish it.

Every time I thought of those last two chemo treatments, my body shuddered.

I did not want to go back.

He sat with me, listened to me, held my hand, and let me agonize over it, but we both knew that I would be going back.

I lost thirty pounds.  He made sure I was getting enough calories each day to exist.  I had no appetite, he would run to the grocery any time I said anything sounded good.

But nothing sounded good at the end, nothing tasted good.

Some days, he would bring me a plate of food from the kitchen that I couldn't stand to be in, filled with food that I couldn't stand to smell, couldn't stand to look at, couldn't stand to think about chewing, and he would sit with me, and talk with me, and I would eat it, then he would take the plate and clean up the kitchen, keeping my nausea as low as possible.

I never thought I could be that sick that I couldn't do simple tasks without gagging.  He never complained, never thought I was being weak - instead he reminded me of how strong I had been all my life, and how I was going to be strong again.

***

I started that round of chemo September 7th.  His gall bladder started to torture him in October landing him in the ER a couple of times.

He finally had it out in November, but was still vomiting.  He needed more hospitalizations, more surgery in December.

Our son stepped in to help when he was hospitalized.

We were miserable to be around.  All we talked about was nausea, vomiting, getting better, eating whatever we could to try and feel better, get better.

We had determined to spend that Thanksgiving alone and quiet and apart from food neither one of us was craving.

He told me he was thankful to be sitting in our living room together on that day of Thanks.  Even though we both felt weak and fatigued and just downright sorry, we were thankful to be together.

***

By the end of my almost year to that point of treatments, we were both spent and our health was poor.  For both of us.

By the end of December, I finally started to feel better.  I was not hungry at all, and still had to count calories to make sure I was eating enough each day, but I felt better.

I started my radiation in January, and decided to stay in Columbus each week at my daughters' family homes, and came home on weekends.

There was a common question at each of my follow up appointments, each time I ran into one of my chemo nurses on the elevator, each time I had a blood draw or port flush - the same question - "where's Scott?"

They looked at us like we looked at us - like we were one unit.  One flesh.

He had been there every step of the way.  He had listened to every difficult conversation with every doctor and nurse.  He had guided me when my brain wouldn't work any longer due to chemo and I literally could not find my way out of some buildings.  He had understood what it was felt like to be abandoned by almost everyone, and comforted me in the loneliest time of my life.  He realized he was my lone rock, and he stood that test beyond most men's endurance.

***

With him being sick and using all of his sick days for my treatments - he could not miss any school for a few months, until he had built up sick time again.

I drove to my radiation treatments each day, gloried in making new friends in the waiting area each day, and felt like I was somehow, miraculously stepping back into life.

I told him about my new friend that was finishing her radiation treatment and how I was going to go back to the center later that day as they had a bell-ringing ceremony to signify your end of treatment.

Knowing that he had no sick days nor any other kind of time off available, I didn't even hint that he could or should be there on my last day of treatment.

A few days before I was released, I met with my radiation-oncologist and when the appointment was over, I bolted to my car.  I got in, sat down and sobbed.

Then I called him. I kept using Starbucks napkins to wipe my nose and when he finally answered his phone, I could barely talk.

He was instantly alarmed, and asked me what had happened with my appointment - I sobbed out the words - "she said I'm done.  She said I only have two more days and I'm done."

I could hear him taking a long time to answer.

His voice wavered and he said "you're done.  You're almost there, sweets, you're almost done".

When I got dressed the day after  my last treatment, I walked out into a waiting room surprisingly full of people -- all people that are dearest to me - dearer than anything on earth.

My three children, and their families were there.  They had pulled their kindergartners out of school.  They were all jumping and yelling "SURPRISE!" and I cried.  And cried.

And then I walked over to that guy that had planned all of this, and didn't have any days off left to take, and still he showed up on the most important day of my life in a long time.

We all went out to a lunch he and my family had planned, then he asked our son to drive his car home, separately from his wife and children.

I protested, knowing how hard it is to drive that far with small children.

He looked at me, told me he had planned this out, our son and his wife were willing, and that he was going to sit beside me on this last drive home.

***

I've had a difficult case of chemo brain, and it hasn't been easy feeling like I have lost parts of me that were valuable.

My body is different.

I no longer dye my hair, giving my body a chance to recover from the overabundance of chemicals it has endured the last couple of years.

He still looks at me like he used to when he sat beside me on that bus.

He tells me it doesn't matter, that in his eyes I am still the strong-willed, strong-bodied girl that he knew over three decades ago.

He says that for the first time in our lives, he has taken care of me - instead of it being the other way around - and he likes to do it.

Many evenings find us sitting together - whether in the garden relaxing with a glass of wine or in our cozy living room or, even in the kitchen now - we are still sitting together.

He has worked hard to usher me back into life, back into living, back into 'being' even though I feel like parts of me are missing.

I hate to go to rooms full of people that know us, as every time I look around at least a third of them are sneaking looks at my chest to see if I wore a bra tonight.  I loathe those looks so much, that I often dress in an old baggy shirt to distract any guessing games with anyone.

If I'm around him, around my family, I don't wear a bra - it's too painful.  They don't care, don't sneak looks - it's just me now, and they accept it like they are professionals at being around people that have lost body parts.

Others, not so much.

He says he doesn't care.  We know why they look, why they are curious, we were curious once as well.  But it doesn't make it any easier.

That's difficult, but more difficult is the parts of my brain that got fried, and don't seem to want to come back.  The stacks of books around our home that I have read and loved, haunt me now.  I can't read more than two paragraphs and have it make sense.

I don't have a running checkbook rolling in my brain any longer.  If you would have asked me our bank balance any given day, any given hour, I could have told you.

Scott called me a couple of months ago when I was staying in Columbus and said "I know you're having a good time with the girls, but you do realize you have spent almost $300?"

My mouth fell open - I had stopped at JoAnne's, eaten lunch out, bought a few lattes, picked up some needed items from Costco - nothing that was over $30 a stop - but it had added up fast, and I had not even been the least bit concerned.

Not until he called did I even think about it.

If you know us, knowing that Scott is now the financially responsible person in our marriage tells you much about where my brain is.

I can't add or subtract or multiply or divide like I did.  I am practicing constantly, and yet it will not hold it's place in my brain - as soon as I am done practicing - it is gone again.

I have what seem to me like large portions of memory missing.  I don't remember my kids childhoods as much.  I don't remember what I watched on tv last week.  It's gone in a way that is different from just not remembering it in a scatter-brained sort of way - it's gone.

I've watched movies twice and not realized it until Scott asks me why I wanted to watch that again.

***

He has a simple faith in a big God that walks him through much of this.  He feels that God gave us each other all those years ago - and that it's our job no matter how difficult the journey - to walk it and to steady each other, lean on each other, and to bolster each other as much as we can.

He thinks God told him that I was going to get through this.  He thinks God has His hand on us now.

He sits beside me and reminds me that I will continue to get better. That one day I will be strong again.

And to be honest with you, I'm not sure if I would be here if he had not been beside me this whole journey.

I say that honestly and with all prejudice and all due respect to my awesome doctors and awesome nurses and awesome treatment plan - I am not totally sure I would be here if it were not for him sitting with me through the whole thing.

That's why I nominate him.  I could fill a volume on his patience, his love, his undying confidence that all will be good, I could tell you all of that, but I tell you the most important - he was there sitting beside me the whole time.