Grief and Grace

 Today and tomorrow, it becomes undeniably real.

I'll be back, hopefully with stories of mercy and grace.

In the Hospital With My Wrong Mind

"It makes me appreciate how wonderful a fully functioning brain is—and what we take for granted." --anonymous professor, ABA expert

So I had a few extra-curricular adventures after surgery.

I remember very clearly after surgery, I think they were trying to get me to urinate, and I was telling the nurses that it was of no use because I "I know too much." I was trying to tell them they could not use ABA on me because I knew too much about it. I also insisted that they call Dr. Melville and he could tell them all about what I was trying to say (apparently I was aware that I was not sounding too clear-headed).

ABA, or Applied Behavior Analysis is a psychology practice that is often used to treat autistic children. And to train dogs. It is a very complicated field of study and I surely don't know too much about it! But that is what got stuck in my head and it continued to give me problems for most of the time I was in the hospital.

My supervisor had stopped by to visit the afternoon of the surgery and I carried on a perfectly sane conversation with her. A couple of hours later when two friends who've known me for a long time stopped by, I was back to insisting I knew too much about ABA and they just couldn't use it on me. My friends, knowing and loving me so well, played along and messed with me just a little bit.

People, somehow (fever and morphine, they think, is how I got the idea) I got the idea that I had "liked" something on a professor's Facebook page and all the ABA people were "liking" it after me and that every time they did that my pain increased. My oldest daughter stayed with me one afternoon (Wednesday?) and pretended to me that she was fixing everything for me. But I was still hurting so I felt like she was not doing a good job of fixing it. At one point she tried to tell me the logical truth by showing me the Facebook page but of course I would have no part of the logical truth! I was convinced I knew the truth! She, in the meantime, was worried that I might not ever get back to normal (or at least, to my previous state of normal)!

Wednesday night, they gave me medicine for nausea. At one point, my husband said he woke up and there were about six people standing over my trying to rouse me but my eyes kept rolling back in my head. Sometime after that, I remember being awake and the room was dark but the television was on. I became convinced that I had unliked all the ABA stuff to try and relieve my pain but that now the ABA people were mad because of that and they didn't know it was me who did it, but they were trying to figure it out and they were threatening to make my life miserable (when they figured out who I was).

At this time I was on the oxygen tube thing to make me breathe right and they had those leg pump things on my legs that would blow up like a balloon and then release on a regular basis. I felt like the oxygen thing was making me work too hard to breathe and something about the balloon things on my legs was making my toes hurt and I mean HURT! But I thought that was all a conspiracy of the ABA people on the TV. I kept calling for the nurse and raising all kind of heck which is so totally unlike me. I think I scared my husband that night! It was by far our worst night there.

And to make matters worse, I finally decided maybe I'd feel better if I listened to "positive encouraging KLove" on my phone. I begged my husband to get my phone and start the music but he is not too technologically advance so it was a big ordeal for me to tell him how to get it going while I was in my wrong mind! We finally got it going and he handed me my phone but I didn't believe it was really my phone so we had a little "discussion" about that and I finally shut up about it even though I did not believe it was really my phone.

Well, people, the first song to play was called "Something Beautiful" a song I have loved since I first heard it. But it has lyrics like "I know where I need to be but I can't figure out" and "I can't figure out how much air I will need to breathe" and "will ya let me drown" but the absolute worst thing for me that night was "consume me like a fire." I was nuts! And I thought the radio was playing these songs because no one liked them and I had to "like" them to make them stop playing and to make my pain go away!

It was at this point that I called on God, Jesus and the Holy Ghost to please help me (not that I hadn't prayed before, but I was desperate now and I knew I could do nothing to help myself). I finally settled down and the morning came and after that, things seemed to get much better. That would have been Thursday morning. I did not go home until Monday.

The funny thing was, up until sometime Saturday, I still believed in my head that when I got myself out of that hospital bed and home to my laptop, I was going to PROVE to all these people that Facebook and the ABA people really were making me have more pain. I had shut up about it because it was clear everyone thought I was delusional but I just knew I could prove it!

Things kind of started unraveling when one of the professors called to check on me and laughed when she said she guessed they'd better not send the ABA expert to the hospital to visit me. It wasn't until another day or so when it dawned on me that he was not the professor whose Facebook page had caused me trouble. I would not have been scared for him to come visit. I realized he didn't even have a Facebook page! Then I realized the guy whose page I thought was causing me all the pain was not an ABA guy! And then I knew he did not have a Facebook page either! And slowly, slowly, my right brain began to return to me and boy was I ever happy to see it!

Lyrics to "Something Beautiful"

In your ocean, I'm ankle deep
I feel the waves crashin' on my feet
It's like I know where I need to be
But I can't figure out, yeah I can't figure out

Just how much air I will need to breathe
When your tide rushes over me
There's only one way to figure out
Will ya let me drown, will ya let me drown

Hey now, this is my desire
Consume me like a fire, 'cause I just want something beautiful
To touch me, I know that I'm in reach
'Cause I am down on my knees, I'm waiting for something beautiful
Oh,Oh,Oh something beautiful

And the water is risin' quick
And for years I was scared of it
We can't be sure when it will subside
So I won't leave your side, no I can't leave your side

Hey now, this is my desire
Consume me like a fire, 'cause I just want something beautiful
To touch me, I know that I'm in reach
'Cause I am down on my knees, I'm waiting for something beautiful
Oh,Oh,Oh Something Beautiful
Oh,Oh,Oh Something Beautiful

In a daydream, I couldn't live like this
I wouldn't stop until I found something beautiful
When I wake up, and all i want i have
You know it's still not what i need something beautiful

Hey now, this is my desire
Consume me like a fire, 'cause I just want something beautiful
To touch me, I know that I'm in reach
'Cause I am down on my knees, I'm waiting for something beautiful
Oh,Oh,Oh something beautiful
Oh,Oh,Oh 

Adaptation and Reflection

I really enjoyed getting out in the fresh air today and taking pictures.

I'm calling this one adaptation. I was going to call it something like "ensnared" or "codependent" but I decided I wanted to keep a positive focus!

It just turned out that I was in the right place at the right time for this photo. We were just about to leave when I spotted the reflection of the bridge in the water and wandered over to check it out. 

It seems I was in the mood for reflective photos today! We had a little cool spell and my youngest daughter and I decided we wanted to get out and get some fresh air. We got a late start, we didn't get to the park till around 4, but it turned out to be a great time to be there taking photos because of the good light at that time of day.

I really think this is one of my favorite images from the day. There is something about the bulbous shape of the tree and its reflection, along with the red of the leaves.

Reflections, reflections! My sister says she sees Sasquatch over there in the background! 

Another calming image of a calming place for me to be. I have not been here since I went with my nephew in December of 2009 to take pictures. I suppose it would do me good to remember this resource I have in my own backyard! 

Maybe times like these, where you can walk in a peaceful place and see nature's beauty and be distracted from your own problems, maybe these are healing times and should be embraced as snugly as that vine is embracing the tree in that first picture!  I knew there was something important in that picture for me! 

Oh how loving is the embrace of grace!

Already, Part of My Biography

I haven’t read the little book yet, but already it is part of my biography. 

I honestly think part of the reason I am writing so much about all of this is that I want a record of the process. I think there may be times when my memory can’t be trusted but if I've left a few words here and there, maybe I will have a better understanding of what happened when I get to the other side. Of this particular trauma, I mean, not that other "other side"! Not yet, I suddenly hope!

I am in a place I have never been before. That alone is exciting, crazy as it sounds. I feel the need to act more Zennish and to focus only on what lies in my path right here, right now and to take one day at a time. When I told my spiritual director this, she asked how that felt. It feels like where I need to be, it feels like it's really true that "It's all grace." It feels like a pretty good place to be.

One huge thing that helps me to deal with this threat is the ability not to jump too far ahead, or when I have jumped there, the ability to bring myself back to what I am actually facing right now. And maybe also the ability to recognize the different ones in me and to understand where they are coming from when they are acting out, and then having the presence of mind to take care of whoever is the needy one at the moment.

There are also other parts of me who are having a field day with all this. The curious one and the writer one are in cahoots, observing how this is going to transpire and writing some of it down for future reference. What a fantastic opportunity! Who knows what I'll do with all this info but it pleases me to gather it.

In other news, I’ve gotten a majority of the things done that are on my list of “things to do before I go.” I wanted to call the list “things to do before I die” but I leave that paper lying loose on my desk and I didn’t want to upset anyone or make them worry about my sense of humor! So next week, I will finish up what remaining loose ends there are and I will go to the hospital to preregister.

In the meantime, I am trying to resist the urge to google about it. One of the things I read was this memorable quote and a veiled warning: "Sticking to a colon surgery diet can be difficult; however, not following the proper instructions can leave you feeling sick and in pain."

Bubbling and Boiling

I watched my eggs boiling for egg salad (1) as I stirred cocoa, sugar, butter and milk to make one of my all-time favorite comfort foods, boiled cookies (2). Later, I stirred the makings of taco soup (3), waiting not so patiently for it to boil. As I watched the pot, I daydreamed about other things I have waited to boil in this big pot, things like gumbo (4) and mayhaw jelly (5), which, when it boils is one of the most beautiful colors I think I have ever seen.

Five foods- that was the prompt we were supposed to be writing about. And so I have done that, right here, right now.  But the back-story bubbling beneath the surface is the wonder about the things that are brewing in me. I would most like to describe it as a quickening (which seems like an old-fashioned, spiritual word), with the potential for growth. How will I be changed by the diagnosis? What might come of the time I will be recuperating? 

Already I feel a sense of gratitude and grace, and love. I am working on attentiveness.

These are the kind of things that serve as markers in one’s life. Right now I’m just watching the bubbling, waiting to see what all comes up to the surface.

Tattoo Removal

We had a guest speaker/singer in church today. He spoke about asking God to give us the grace to handle a thousand things. There was no way he could have known that I’d recently started reading a book I’ve had for months called A Thousand Gifts, where the author set out to make a list of a thousand graces from God’s hand. She writes beautifully of how that process changed her life. There was no way the speaker could have known I’d decided to make my own list of 1000 graces and that the first thing on my list would be the biggest thing of a thousand things I have to handle in my own life right now.

He spoke of God’s refreshing, and told us to ask for it. He said that God is as concerned with our refreshing as he is with our victory. There is no way the speaker could have known how long I have lived so close to the edge in my life, how stressed and worn out I am, how desperately I need refreshing, and how I’d decided colon cancer was the way God was going to provide refreshing for me. I mean, you know, 4-6 weeks of recovery time is also 4-6 weeks of time to be refreshed and renewed. My main task will be to rest and let my body be healed. What better time for a soul to also heal and be refreshed?

One of the speaker’s gifts is the ability to pray for people and usually after the service he will pray for anyone who would like to be prayed over. I stood in line and waited my turn. When I got to him, he told me that I had tattoos that God wants to remove, labels that are no longer appropriate to who I am. He says God wants to put a new tattoo on my forehead, a new label. 

There is no way that man could have known that I have been laughing at the irony of me getting a tattoo one day (they will tattoo the cancerous spot the day before the surgery so that the surgeon can find it) and having it removed the very next day, when they remove the tattoo AND the cancerous spot. I am very reassured by knowing God wants to remove my tattoos. I am grateful. 

He also mentioned that I carry a lot of pain and that God wants to take that too. I’ve been thinking about this one a while myself, believing it is time for me to lay some things down and quit identifying myself by my pains. He said there should be none of this talk of me saying God should not have to take my pain. I think there is also a message for me in that statement. I know that in dealing with the colon cancer I will have to allow others to carry part of my burden. I am accustomed to being the strong one. I will have to learn to accept my weaknesses.

I often say that I have grown up hearing about God’s grace but I struggle to understand it. And I have been told God loves me but I struggle with that too. Today I figured something out. God is not chasing me down to tell me what all I have done wrong in my life. He is pursuing me because he loves me, because he wants me to be in his company. I truly believe God is using colon cancer in my life to refresh me and to love me. I am grateful. Colon cancer will be number one on my list of a thousand gifts.

But for God’s grace, there is no way that man could have known any of the things he said that were hitting my heart with the precision of a laser.

Problems on the Path

So I was five years late in getting my colonoscopy. I don’t know why I had put it off but I did. And a week after I got it down, the nurse from the doctor’s office called wanting to know if I could come in the next day to speak with the doctor. I’m no dummy. I knew she wasn’t calling me in to brag on my fiber intake. 

She had removed six polyps and part of a seventh one. The seventh one was, is, cancerous. It is in my lower colon. The plan is to go in there and remove the polyp and a small section of the colon on either side of the polyp and then to reconnect the hose, er, I mean colon. 

We went to see the surgeon yesterday. He explained everything and then said he was going to be out of town for two weeks. He said he would be happy to do the surgery, and it would not hurt to wait but if I wanted to go ahead with someone else that would be fine too. It really fits my schedule better to wait. That will give me time to get all my loose ends tied up at work. So we are aiming at doing the surgery the first, or preferably, the second week of November. 

I am learning some things already from all of this:

First of all, never underestimate the value of having that second pair of ears with you. I sort of expected to hear what I heard, but when the word cancer came out of the doctor's mouth, my brain sort of keeled over and fainted on me. I'm going to call that experience "brain drop." I heard my voice telling the doctor that I needed to be writing some of that stuff down and saw my hand reaching into my purse for a pencil. She stepped out and got me a card to write on and then offered to write it for me. But I needed to write it down, to have the words flow on paper into my brain like a road map marking an uncertain path. The doctor's small offering of a card and the nurse's hand resting ever so briefly on my shoulder as she left me in the room to wait for the doctor scared and informed me. It is amazing what people can tell you with no words.

Second of all, don't underestimate your enemy. The doctor talked like it was just a matter of snipping the offending part out and hooking the ends back together. I heard that and thought, wow, day surgery! She never said anything about if the offending part was too close to the ending part, you'd have to get a colostomy (and my offending part is in my lower colon). Also, when she said I needed a cat scan and blood work for the surgeon, she stopped short of saying "so we can see if there are any more cancer cells in your abdominal cavity."

Thirdly, be prepared for surprises, and know what they are supposed to be doing to you. If you are not sure, check with your doctor. Today I had blood work done and I was supposed to go to radiology to get my cat scan "kit". The nurse in the doctor's office had laughed and said she wasn't sure what that would be. I laughed too, and said "it's not like they will have me drinking barium." Well, guess what? First, they had rescheduled my cat scan ("probably due to "pre-cert" issues. That's usually what it means.") which upset me greatly. Surprise! Then she came out packing a jar of barium for me to drink before the test. Surprise again! Nobody in the doctor's office said anything about drinking barium. I don't like surprises. The good news is that I have until Sunday night to make friends with my "surprise". I called the office and they confirmed that I was supposed to be drinking barium.

Fourthly, one can't be a wuss when one is a cancer patient. One must learn to speak up for oneself. (Cyn, not a word!)

There is more but it's not quite all organized yet. I am sure I will learn more as I walk this path. I do want to write more about this but it is kind of hard because you know, even though the prognosis looks good, I really don't know how things will end up.

I go for the cat scan Monday morning. They do not expect any problems to show up there. Let's pray that their expectations are correct.